Autism in the Adult

What is Spectrum?: The Importance of Pattern

Join Dr. Regan for an episode about what "spectrum" means and why the pattern of neurologic characteristics in each individual is so important to understand. 
Dr. Regan's Resources
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
 
Read the episode transcript: 
100:00:05,930 --> 00:00:07,750Hello and welcome.
200:00:07,760 --> 00:00:09,690This is Dr Theresa Regan,
300:00:09,690 --> 00:00:11,610your host for this podcast,
400:00:11,620 --> 00:00:13,310autism in the adult.
500:00:13,320 --> 00:00:15,600I am a neuropsychologist,
600:00:15,610 --> 00:00:18,080a certified autism specialist,
700:00:18,090 --> 00:00:27,620the parent of an autistic teenager and the director of an adult diagnostic autism clinic in central Illinois.
800:00:28,240 --> 00:00:33,720I am happy that you're joining me today for our episode about spectrum.
900:00:33,730 --> 00:00:35,590What does that mean?
1000:00:35,600 --> 00:00:39,010And Why is pattern important?
1100:00:39,900 --> 00:00:47,540So let me explain a little bit of background as far as where I'm coming from with spectrum and pattern.
1200:00:48,380 --> 00:00:50,720So as a neuropsychologist,
1300:00:50,730 --> 00:00:58,270I specialize in understanding how brain pathways and brain health impact things like thinking,
1400:00:58,270 --> 00:01:01,080skills but also emotions,
1500:01:01,080 --> 00:01:11,420personality and behavior by looking at how someone's brain is able to process verbal information or learn new information,
1600:01:11,430 --> 00:01:16,910pay attention how they're able to balance emotions or plan for the future.
1700:01:16,920 --> 00:01:29,250The neuropsychologist can make conclusions about the health of the brain or specific ways that the brain has connected informed pathways across different locations.
1800:01:30,400 --> 00:01:42,550So we know that the brain is divided up into various areas and the locations can have specific functions specific jobs.
1900:01:42,550 --> 00:01:48,990So the left hemisphere versus the right hemisphere or the center of the brain versus the outside.
2000:01:49,090 --> 00:01:56,820There are also specific nuclei in the center of the brain and there are lobes that we talk about the frontal lobe,
2100:01:56,820 --> 00:01:57,430the parietal lobe,
2200:01:57,430 --> 00:01:58,570etcetera.
2300:02:00,000 --> 00:02:08,790So the brain is really special in that the neurology is patterned and localized and there's a function to it.
2400:02:10,010 --> 00:02:22,300So one of the ways that a neuropsychologist makes conclusions about those patterns and what's going on in the brain is by looking at the way that the brain behaves.
2500:02:22,310 --> 00:02:24,780So how does it do with reading?
2600:02:24,780 --> 00:02:28,660How does it do with um staying calm and centered?
2700:02:28,660 --> 00:02:35,240And that gives um revelation about the connections,
2800:02:35,250 --> 00:02:36,230the anatomy,
2900:02:36,230 --> 00:02:37,760how the brain is wired.
3000:02:39,440 --> 00:02:43,220So a huge focus of what neuropsychologist analyze is.
3100:02:43,220 --> 00:02:46,370Not any one score.
3200:02:46,380 --> 00:02:53,070Like let's say we give a memory task and a reading task and we look at something called praxis,
3300:02:53,080 --> 00:02:56,900we're not gonna look at any one score.
3400:02:56,900 --> 00:02:58,530What did this person get correct?
3500:02:58,530 --> 00:02:59,960What did they get wrong?
3600:02:59,970 --> 00:03:01,050Um No,
3700:03:01,050 --> 00:03:05,470we're looking for this data to fall into a pattern.
3800:03:05,480 --> 00:03:10,020It's the pattern that is really where the revelation is.
3900:03:10,140 --> 00:03:15,940And once we get a significant amount of data from a checkup,
4000:03:16,500 --> 00:03:21,290we look for how these pieces of data hang together.
4100:03:21,300 --> 00:03:27,400So the pattern should be consistent with the way that the brain is organized anatomically.
4200:03:27,410 --> 00:03:38,490So in the same way that a neurologist would check your vision or reflexes your walking patterns to make conclusions about the health and functioning of the brain.
4300:03:38,670 --> 00:03:45,400A neuropsychologist also uses information um about patterns.
4400:03:45,400 --> 00:03:47,620So we look at cognitive scores,
4500:03:47,630 --> 00:03:55,560we make behavioral observations and we uh make conclusions about how the brain is functioning.
4600:03:57,360 --> 00:04:08,640Different types of situations will have different patterns because various pathways might be impacted uh in a sequence that's really kind of unique.
4700:04:08,650 --> 00:04:10,000For example,
4800:04:10,000 --> 00:04:38,930if someone has a traumatic brain injury with a left sided brain bleed and a diffuse axonal injury ... that has a different neuropsychological pattern than someone who presents with the Parkinson's condition and because of this neuropsychologist are very practiced at looking for pattern and understanding how important pattern is and understanding the neurology of the individual.
4900:04:41,600 --> 00:04:44,220In the case of the autism spectrum.
5000:04:44,230 --> 00:04:53,000Certain neurologic characteristics hang together in one person because of differences in the development of the nervous system.
5100:04:54,040 --> 00:05:00,680The characteristics hang together behaviourally because they fall within specific pathways.
5200:05:00,680 --> 00:05:29,740They cluster together anatomically in some way because scientists have noted that these neurologic characteristics sometimes hang together and one person they say oh we should call this cluster of neurology something so that we can start talking about it and learning more about it and then it's been decided that we'll call this clustering the autism spectrum.
5300:05:31,120 --> 00:05:36,310So when do we actually call that neurology autism.
5400:05:37,330 --> 00:05:46,890So what the scientific community has done is determined seven diagnostic criteria to look at in the assessment process.
5500:05:46,900 --> 00:05:59,490And they've also developed general guidelines and as with any of um the diagnostic conditions that we have in the D.
5600:05:59,490 --> 00:05:59,730S.
5700:05:59,730 --> 00:05:59,960M.
5800:05:59,960 --> 00:06:00,470Five,
5900:06:00,480 --> 00:06:04,380the diagnostic and statistical manual fifth edition.
6000:06:04,390 --> 00:06:16,970You know there are committees that get together and they look through research and our current understanding and they determine then what the criteria are.
6100:06:16,980 --> 00:06:33,290But there are always discussions and disagreements about uh when do we call this autism when do we call this depression when do we call this dyslexia whatever the state is that they're trying to describe.
6200:06:33,830 --> 00:06:38,250So one thing is to know that there are seven diagnostic criteria.
6300:06:38,260 --> 00:06:40,940And then there are also uh,
6400:06:40,950 --> 00:06:45,590disagreements and discussions about whether other things should be included,
6500:06:45,600 --> 00:06:46,230um,
6600:06:46,230 --> 00:06:47,200etcetera.
6700:06:48,230 --> 00:06:49,520But for our purpose,
6800:06:49,520 --> 00:06:54,260what I want to emphasize is that there's this structure,
6900:06:54,440 --> 00:07:02,860these criteria and the first three are social in nature and all three of those must be met.
7000:07:03,800 --> 00:07:09,520The last four criteria are grouped into what's called repetitive and restricted behaviors,
7100:07:09,560 --> 00:07:12,710and only two of the four must be met.
7200:07:13,430 --> 00:07:30,400So one type of pattern that we see in autism is that individuals may have unique patterns of which specific criteria are met in order to get this to meet this diagnostic threshold.
7300:07:30,410 --> 00:07:35,570And that can mean that individuals on the spectrum can really present differently.
7400:07:35,580 --> 00:07:39,190So one person may meet all seven criteria.
7500:07:39,200 --> 00:07:42,550Another may meet five or six criteria,
7600:07:42,550 --> 00:07:46,320depending on how many of that last grouping they present with.
7700:07:47,480 --> 00:07:48,820Think about this.
7800:07:48,830 --> 00:07:52,430There could be two people who both meet five criteria,
7900:07:52,440 --> 00:07:59,440but they meet different groupings of the criteria and therefore they present with somewhat different characteristics.
8000:07:59,450 --> 00:08:05,770So they may meet all three of the social criteria.
8100:08:05,780 --> 00:08:08,940And then two of the last four.
8200:08:08,950 --> 00:08:10,300But which two?
8300:08:10,310 --> 00:08:16,070And that brings this uniqueness of what the features are for these individuals.
8400:08:17,250 --> 00:08:23,540So the combination of which criteria are met will create a pattern for that individual.
8500:08:23,540 --> 00:08:27,110And this is part of what I consider.
8600:08:27,120 --> 00:08:29,150When I'm thinking about spectrum?
8700:08:29,160 --> 00:08:30,650What does spectrum mean?
8800:08:30,660 --> 00:08:31,110Well,
8900:08:31,110 --> 00:08:31,460to me,
9000:08:31,460 --> 00:08:41,160it's pattern and that the pattern in one person versus another person who meets criteria for the threshold of diagnosis,
9100:08:41,170 --> 00:08:44,310that's gonna have some unique flavors to it.
9200:08:44,320 --> 00:08:46,920So the neurologic foundation,
9300:08:47,150 --> 00:08:50,640the criteria are met in both individuals,
9400:08:50,640 --> 00:08:54,820but they can be met with a different pattern of features.
9500:08:56,970 --> 00:09:10,420It is not true that individuals with seven criteria met have more significant impact in their daily life than someone where five criteria are met.
9600:09:10,430 --> 00:09:14,930This does not have to do with how much someone is impacted.
9700:09:14,940 --> 00:09:18,930It just has to do with the breadth of the neurologic features.
9800:09:18,940 --> 00:09:19,650Um,
9900:09:19,650 --> 00:09:23,630some of which will really be beneficial to that individual.
10000:09:23,630 --> 00:09:29,230They'll help in their daily life and other things that will be challenges.
10100:09:29,240 --> 00:09:31,950But the number of criteria,
10200:09:31,960 --> 00:09:34,730those do not determine,
10300:09:35,040 --> 00:09:35,860uh,
10400:09:35,870 --> 00:09:38,580what some people call quote severity,
10500:09:38,590 --> 00:09:39,430um,
10600:09:39,440 --> 00:09:40,530of autism.
10700:09:40,530 --> 00:09:44,900A lot of people who come for a diagnosis want information about,
10800:09:44,910 --> 00:09:46,250about severity.
10900:09:46,250 --> 00:09:47,980And that's not what we're talking about.
11000:09:47,980 --> 00:09:50,670We're talking about pattern because,
11100:09:50,670 --> 00:09:51,040you know,
11200:09:51,040 --> 00:10:00,890it's so important to understand each person as an individual and it's not enough to go for a diagnosis and then be told,
11300:10:00,890 --> 00:10:01,070well,
11400:10:01,070 --> 00:10:02,220yes or no,
11500:10:02,230 --> 00:10:06,230you fit the criteria or you don't really,
11600:10:06,230 --> 00:10:09,880what you're coming for is revelation of this pattern.
11700:10:09,890 --> 00:10:10,410Well,
11800:10:10,410 --> 00:10:12,530what does this look like in me?
11900:10:13,080 --> 00:10:15,650How does this impact my daily life?
12000:10:15,660 --> 00:10:20,510What are my strengths and challenges within this neural neurologic pattern.
12100:10:20,520 --> 00:10:23,000And that's where the gold is.
12200:10:23,000 --> 00:10:24,540That's where the spectrum is.
12300:10:24,540 --> 00:10:31,020That's where self awareness and understanding lie in this revelation of pattern.
12400:10:32,630 --> 00:10:36,580In addition to the pattern across the seven criteria,
12500:10:36,580 --> 00:10:40,920we also want to look at the pattern within each criteria.
12600:10:40,930 --> 00:10:43,400So there are different layers of pattern.
12700:10:43,410 --> 00:10:49,880Let's say someone meets the same five criteria that another person meets,
12800:10:49,890 --> 00:10:55,400but they can still meet each individual criteria with unique features.
12900:10:55,400 --> 00:10:57,470So let's take this and talk about it.
13000:10:58,250 --> 00:10:59,320For example,
13100:10:59,320 --> 00:11:01,730let's take the first criteria.
13200:11:01,740 --> 00:11:14,400And this has to do with difficulty in the area of social approach social reciprocity and the back and forth flow of conversation during social interactions.
13300:11:14,410 --> 00:11:19,560And usually this criteria is called the social reciprocity criteria.
13400:11:19,560 --> 00:11:22,450And reciprocity means exchange.
13500:11:22,720 --> 00:11:32,010Um so what we're looking for here is not whether someone can exchange information about topics and facts,
13600:11:32,020 --> 00:11:42,360but whether they lean toward being able to exchange information for social purposes for emotional purposes and to take turns.
13700:11:42,360 --> 00:11:48,010So there's kind of an equal exchange um in connecting with another person,
13800:11:48,750 --> 00:11:56,920one autistic individual may meet this criteria because he rarely approaches others at all for any kind of social exchange.
13900:11:56,920 --> 00:11:58,600So this approach,
14000:11:58,600 --> 00:12:05,060piece of the criteria may be very limited when he does approach,
14100:12:05,070 --> 00:12:09,500he really only wants answers to questions directly asked.
14200:12:09,510 --> 00:12:14,530Um or he will uh answer a question if somebody else asks it,
14300:12:14,530 --> 00:12:18,300but he basically exchanges facts and data,
14400:12:18,300 --> 00:12:24,170but he doesn't really fully engage in exchanging social and emotional information?
14500:12:25,480 --> 00:12:26,320For example,
14600:12:26,320 --> 00:12:30,020if someone is explaining why they're looking forward to christmas,
14700:12:30,110 --> 00:12:43,450this autistic individual may say something like uh huh rather than really fully engaging in that social peace um or saying something like I've always loved christmas too.
14800:12:43,450 --> 00:12:45,730What's your favorite christmas tradition?
14900:12:48,100 --> 00:12:54,750In contrast to the autistic individual who does not tend to approach or engage socially,
15000:12:54,760 --> 00:13:05,020another individual may do so to really an extreme level a level that does not create good social exchange because it's done too frequently.
15100:13:05,440 --> 00:13:22,480This individual may respond to the Christmas comment by talking in a monologue for 15 minutes about the differences in Christmas traditions across the world and the impact of Pagan practices and celebrations on current Christmas traditions.
15200:13:23,220 --> 00:13:32,830Now the first and the second individual both struggle to appropriately exchange the social piece of interaction,
15300:13:32,840 --> 00:13:43,820one because of infrequent exchange and the other because of too much approach and exchange and too much talking,
15400:13:43,830 --> 00:13:48,480not taking turns and asking for the other person's input.
15500:13:48,830 --> 00:13:58,720Um and really allowing there to be the social emotional piece instead of uh kind of a large exchange of factual information.
15600:13:59,610 --> 00:14:03,980So this is an example of the pattern within a criteria.
15700:14:03,990 --> 00:14:08,210Um so it can look unique from person to person on the spectrum.
15800:14:09,510 --> 00:14:15,750Another example of an internal pattern within a criteria would be the 7th criteria,
15900:14:15,750 --> 00:14:18,770which is about sensory processing.
16000:14:19,570 --> 00:14:24,090Now this criteria does not have to be present for a diagnosis,
16100:14:24,100 --> 00:14:25,740but when it is present,
16200:14:25,740 --> 00:14:33,030the pattern may be one of high levels of reactivity to sensory information.
16300:14:33,040 --> 00:14:34,040So this could be,
16400:14:34,040 --> 00:14:35,280for example,
16500:14:35,290 --> 00:14:40,650someone that's really very sensitive to touch or light.
16600:14:41,510 --> 00:14:46,490It could be a pattern of under reactivity to sensory information.
16700:14:46,490 --> 00:14:51,480So when they experience something from the sensory environment,
16800:14:51,480 --> 00:14:54,920they just don't notice it as much as other people would.
16900:14:55,990 --> 00:15:02,420And it could also include an unusual fascination with sensory aspects of the environment.
17000:15:02,430 --> 00:15:09,640So really loving to watch visual movement or to smell certain objects,
17100:15:09,640 --> 00:15:11,820that this sensation,
17200:15:11,820 --> 00:15:15,280this part of the environment is really fascinating.
17300:15:16,970 --> 00:15:22,140So one autistic individual may show extreme sensitivity to sound,
17400:15:22,160 --> 00:15:29,380a very narrow range of food textures in their diet and an extreme need for high levels of movement.
17500:15:29,390 --> 00:15:32,160This vestibular sensory process,
17600:15:32,750 --> 00:15:38,960but a second individual may show a different pattern within sensory processing.
17700:15:38,990 --> 00:15:52,780So they might show a very high pain tolerance that they don't even notice that their finger was broken until they realized they couldn't hold a pencil to complete a form even though the injury occurred the day before.
17800:15:54,100 --> 00:16:06,330Ah This person may also be highly sensitive to movement to the point where they'd rather sit still and do table work than moving around or playing sports or going outside.
17900:16:07,400 --> 00:16:11,110So even though people meet the same criteria,
18000:16:11,120 --> 00:16:13,870they certainly may meet those in different ways.
18100:16:13,880 --> 00:16:17,660And that individual pattern is really important.
18200:16:19,780 --> 00:16:23,310Given these examples of patterns across the criteria,
18300:16:23,310 --> 00:16:24,210for example,
18400:16:24,220 --> 00:16:25,930how many are met,
18500:16:25,940 --> 00:16:28,290what pattern of criteria are met.
18600:16:28,300 --> 00:16:30,900and also within each criteria.
18700:16:30,910 --> 00:16:35,070What do the specific sensory differences look like for this individual?
18800:16:35,070 --> 00:16:36,160For example,
18900:16:36,170 --> 00:16:39,700you can get a sense of what spectrum can look like.
19000:16:40,080 --> 00:16:43,510So this is how I view the term spectrum,
19100:16:43,520 --> 00:16:53,160I really don't find it useful uh as any kind of um continuum of what people would call severity.
19200:16:53,170 --> 00:17:01,590Um but rather spectrum is a way of knowing that the same neurologic criteria are met for all of these individuals,
19300:17:01,590 --> 00:17:05,900but the specific neurologic manifestations,
19400:17:05,900 --> 00:17:27,550the way that this neurology manifests will vary from person to person and that level of individual insight with people that's so important to um kind of reveal that it's not enough just to have a global uh term that we're going to call things,
19500:17:27,550 --> 00:17:30,920we really want to know people on an individual level,
19600:17:31,700 --> 00:17:59,240it makes more sense to look at how much struggle someone's having based on a pattern rather than the number of characteristics or to analyze how they are so gifted in this particular academic subject or this particular part of work or life um life skills and ways that that is a manifestation of their unique neurology.
19700:17:59,740 --> 00:18:03,370So whether we're looking at struggles or gifts,
19800:18:03,380 --> 00:18:05,820challenges or strengths,
19900:18:05,830 --> 00:18:17,830we like to know the pattern this person has both and in a unique pattern that's different than this next person that we see on the spectrum.
20000:18:18,990 --> 00:18:25,150When we're able to examine what the pattern of neurologic features are for one specific person,
20100:18:25,170 --> 00:18:30,620then we can work towards increased self awareness of pattern for that individual,
20200:18:30,620 --> 00:18:32,320maybe for family around them,
20300:18:32,320 --> 00:18:41,050who want to understand better but feel confused and to focus on strategies that may specifically address um,
20400:18:41,060 --> 00:18:43,760the strengths and challenges of this person.
20500:18:43,770 --> 00:18:44,350You know,
20600:18:44,350 --> 00:18:59,260how can we amplify the things that they're just so strong in and how can we help with things that are challenges or things that are draining and really making some of life more difficult than we wanted to be?
20700:19:01,350 --> 00:19:01,910Part of.
20800:19:01,910 --> 00:19:05,310What I think is most valuable about the diagnostic process.
20900:19:05,320 --> 00:19:12,370Is this kind of feedback from the clinician to the individual about not just yes or no,
21000:19:12,370 --> 00:19:13,620Is there a diagnosis,
21100:19:13,620 --> 00:19:16,520but what does autism look like in me?
21200:19:16,520 --> 00:19:18,090How is that manifest?
21300:19:18,100 --> 00:19:23,040And oftentimes people coming in for a diagnosis will know some of that,
21400:19:23,070 --> 00:19:26,580but the clinician should be skilled enough to say.
21500:19:27,250 --> 00:19:29,300And I also see this in you.
21600:19:29,310 --> 00:19:39,850I see that this pattern in your nervous system likes this and I'm wondering about this issue here so that there's more revelation about pattern.
21700:19:39,860 --> 00:19:42,320It's more um identified.
21800:19:42,320 --> 00:19:43,550It's more specific.
21900:19:43,550 --> 00:19:44,760It's clearer.
22000:19:44,770 --> 00:19:49,990Um and that is part of what makes the assessment process so valuable.
22100:19:52,040 --> 00:20:01,220Let's end with a few more examples just to highlight what I mean by pattern and differences between two individuals on the spectrum.
22200:20:02,860 --> 00:20:06,220So let's take Julio who is a 50 year old male.
22300:20:06,220 --> 00:20:10,250He's working as a structural engineer for a local company,
22400:20:10,260 --> 00:20:11,740he's married to Mona,
22500:20:11,740 --> 00:20:17,960they have three daughters and the last of their daughters has just moved out to attend college.
22600:20:17,960 --> 00:20:22,190So they are in this early empty nest season.
22700:20:22,200 --> 00:20:37,880Life is changing and Mona really starts to spend quite a bit of time alone with Julio when he's not at work and she brings him in to see a psychologist because she feels that Julio is depressed.
22800:20:39,410 --> 00:20:42,170Mona notes that with her Children gone,
22900:20:42,170 --> 00:20:48,180she's really struck by how limited Julio converses with her at home.
23000:20:48,230 --> 00:20:52,540It's very quiet now and she can't really get much out of him.
23100:20:52,550 --> 00:20:55,160He's likely to come home after work,
23200:20:55,170 --> 00:20:55,820eat dinner,
23300:20:55,820 --> 00:21:03,320go to the basement to work on his tabletop Battle replicas most recently highlighting the Battle of the Bulge,
23400:21:03,330 --> 00:21:05,780a famous battle from World War Two.
23500:21:06,680 --> 00:21:17,480Now when she invites him to watch a tv show with her after dinner instead he'll sit in the rocking chair and watch the show but does not like to talk or a visit during the program.
23600:21:18,330 --> 00:21:29,330His facial expressions and tone of voice is either serious or really kind of flat or empty of emotion and she has a hard time gauging what he's thinking.
23700:21:29,940 --> 00:21:42,740She's used to the more energetic conversations that she would have with her daughters and she concludes that Julio is depressed during this life season of change.
23800:21:42,750 --> 00:21:47,890He's thinking about uh Retirement in the next 10 years.
23900:21:47,890 --> 00:21:52,390He is with Mona now in an empty nest.
24000:21:52,390 --> 00:22:00,960And she hypothesizes since he doesn't talk very much that his thought process has to do with depressed mood.
24100:22:04,120 --> 00:22:04,420Now.
24200:22:04,420 --> 00:22:08,970We didn't talk about all the autistic characteristics in Julio,
24300:22:08,970 --> 00:22:13,230but you can get a flavor of how this is manifest in their home.
24400:22:14,330 --> 00:22:15,340In contrast,
24500:22:15,340 --> 00:22:18,150let's take Maddie who was a 27 year old,
24600:22:18,150 --> 00:22:19,040single female.
24700:22:19,040 --> 00:22:24,490She has no Children and she has always loved to be the center of attention.
24800:22:24,620 --> 00:22:31,860She's put on plays and music performances for her family as a child and then she focused on magic tricks.
24900:22:31,870 --> 00:22:33,350When she was in middle school.
25000:22:33,350 --> 00:22:35,690She really wanted to wow everyone.
25100:22:36,940 --> 00:22:46,320And what became apparent is that she really liked to have the role of an entertainer and she liked to have an audience.
25200:22:46,330 --> 00:22:51,330Um that could see all of her gifts and talents.
25300:22:52,760 --> 00:22:57,100She also liked to take control of the topics of conversation,
25400:22:57,110 --> 00:23:00,760so making sure that it's something she's really interested in,
25500:23:00,760 --> 00:23:05,910like greek mythology or sewing costumes for theater or cosplay events.
25600:23:05,940 --> 00:23:10,560She has a hard time understanding how she impacts others.
25700:23:10,570 --> 00:23:23,570What does this person need from me during the interaction and some people feel like maybe she's really controlling because she likes things to go her own way and doesn't care about other people.
25800:23:24,350 --> 00:23:26,980But this is really a misunderstanding.
25900:23:26,990 --> 00:23:34,850She feels comfortable in a specific social role and she also likes to know what's going to happen next.
26000:23:34,860 --> 00:23:42,400So she likes to choose the activities that they do together or the topics that they're talking about.
26100:23:43,580 --> 00:23:44,760She over plans,
26200:23:44,760 --> 00:23:49,660vacations with family and will hand out a schedule of activities to everyone.
26300:23:50,470 --> 00:23:55,050She'll leave the room of someone who wants to talk about their own interests.
26400:23:55,110 --> 00:23:57,390And even though she talks successively,
26500:23:57,390 --> 00:24:02,890she also complains about noises that other people make when they talk.
26600:24:02,900 --> 00:24:03,610Uh,
26700:24:03,620 --> 00:24:09,510so she wants people to be quiet and people around her are very confused,
26800:24:09,520 --> 00:24:14,510like how can you talk so much and also want us to be quiet.
26900:24:14,520 --> 00:24:25,900But that's a very common phenomenon and sensory processing that the person is much more upset by surrounding noise than their own noise.
27000:24:26,770 --> 00:24:27,950She wears noise,
27100:24:27,950 --> 00:24:35,240canceling headphones around others and people feel because of this pattern that she's very self absorbed.
27200:24:35,250 --> 00:24:35,850They really,
27300:24:35,850 --> 00:24:38,130she's misunderstood essentially.
27400:24:38,140 --> 00:24:38,970Um,
27500:24:38,980 --> 00:24:42,220she doesn't ask other people how they're doing or what they need,
27600:24:42,220 --> 00:24:47,180how their weakened was she often corrects others when they make errors of detail,
27700:24:47,180 --> 00:24:52,390like saying something cost $50 when it actually cost 50-37.
27800:24:54,170 --> 00:24:59,050So both of these people did not realize their diagnosis.
27900:24:59,060 --> 00:25:00,200Uh,
28000:25:00,210 --> 00:25:02,660and then at a certain age in life,
28100:25:02,660 --> 00:25:16,060they were given a diagnosis and the information about their neurology helped them understand and those around them what,
28200:25:16,070 --> 00:25:19,890how the neurology manifest both in things,
28300:25:19,890 --> 00:25:35,260they were really good at the things that were gifts that were strengths and also things that were characteristics that they didn't intend to isolate themselves from anyone or hurt anyone's feelings,
28400:25:35,260 --> 00:25:41,360but they really just had different needs socially and with this increased awareness.
28500:25:41,380 --> 00:25:46,380People were able to understand and interact in a more satisfying way.
28600:25:48,600 --> 00:25:52,370So both individuals struggled to socially connect with others.
28700:25:52,480 --> 00:25:55,800But while Julio was under engaged with his wife,
28800:25:55,810 --> 00:26:03,570Maddy ended up being over engaged in her social exchanges and she wasn't as attentive to the needs of others.
28900:26:06,110 --> 00:26:19,070Being aware of why two autistic individuals can both meet criteria but look quote so different on casual observation can help us connect with the concept of spectrum.
29000:26:19,730 --> 00:26:35,570We also can become more aware of why one autistic individual may benefit from one thing as a recommendation while another needs something different that we have this unique patterning and that part is very important.
29100:26:37,410 --> 00:26:43,370There are the same neurologic foundations but with different specifics in the characteristics.
29200:26:45,380 --> 00:26:52,180So whether we're talking about an autistic individual who is really self aware,
29300:26:52,190 --> 00:27:18,730who has strategies that really help them during rough spots and who is able to focus and use their strengths to great advantage and to um really meet their goals and to help others or if we're talking about someone who is not diagnosed or newly diagnosed and still learning this concept of the individual pattern,
29400:27:18,830 --> 00:27:30,720The individual spectrum of qualities really is an important revelation to focus on understanding each individual because that's where the power is right.
29500:27:30,730 --> 00:27:31,860I see you,
29600:27:31,860 --> 00:27:32,830I hear you,
29700:27:32,830 --> 00:27:34,660I get you better.
29800:27:34,660 --> 00:27:36,570I think we can connect more.
29900:27:36,580 --> 00:27:37,320Um,
30000:27:37,330 --> 00:27:42,870that's really the magic about thinking about pattern within the spectrum.
30100:27:44,960 --> 00:27:50,120I am really glad you joined me to hear about pattern and spectrum today within autism.
30200:27:50,750 --> 00:27:58,820And next time we'll be starting a new series and we're going to focus on misdiagnosis on the autism spectrum.
30300:27:59,790 --> 00:28:05,180In addition to those who are on the spectrum who don't carry any diagnosis,
30400:28:05,190 --> 00:28:09,880many others carry a misdiagnosis or several,
30500:28:09,890 --> 00:28:10,580um,
30600:28:10,580 --> 00:28:13,440diagnoses that really are not correct.
30700:28:13,450 --> 00:28:17,280And often this is within areas of mental health.
30800:28:17,910 --> 00:28:21,930So we're going to start by talking about why this occurs on the spectrum.
30900:28:21,940 --> 00:28:30,680And then we're going to review various conditions that are common culprits for misdiagnosis such as borderline personality disorder,
31000:28:30,690 --> 00:28:32,030bipolar disorder,
31100:28:32,040 --> 00:28:33,870attention deficit and more.
31200:28:34,430 --> 00:28:38,200I hope you'll join me for our next series on misdiagnosis.
31300:28:38,210 --> 00:28:39,740And thanks for tuning in.
 

Q and A episode 2: Your Questions Answered

Join Dr. Regan for the second Q and A episode in which she answers listener questions related to CBT therapy, parenting, autism in the workplace, non epileptic seizures, and exercise goals
Topics covered in this episode -- 
askjan.org Workplace Accommodations
Time Timers. Link to physical timer here or you can search app stores for Time Timers
Regan blog post on non-epileptic seizures
Virtual Fitness Challenges
Dysregulation podcast series, episode 1
Momentum for Activities podcast series, episode 1
 
Dr. Regan's Resources
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
 
Read the episode transcript here:
 
200:00:02,540 --> 00:00:05,950Hello and welcome.300:00:05,960 --> 00:00:08,180This is Dr Theresa Regan.400:00:08,190 --> 00:00:10,560I'm a neuropsychologist,500:00:10,570 --> 00:00:18,350a certified autism specialist and the director of an adult diagnostic autism clinic in central Illinois.600:00:18,940 --> 00:00:20,810I am the author of books,700:00:20,820 --> 00:00:25,260a speaker and your host for autism in the adult podcast.800:00:26,430 --> 00:00:32,120Today we're going to continue our question and answer series.900:00:32,120 --> 00:00:33,750It's kind of a mini series.1000:00:33,750 --> 00:00:41,480This is number two and will be our final part of the question and answer episodes for a bit of time.1100:00:41,480 --> 00:00:44,720We're going to pause on those and in the future.1200:00:44,720 --> 00:00:47,260We will bring back some more episodes.1300:00:49,040 --> 00:00:56,260Today's questions that I'm going to be answering from listeners across the world1500:00:57,200 --> 00:00:59,070are a little eclectic.1600:00:59,070 --> 00:01:03,760So we're just gonna go through various topics and respond to those.1800:01:05,040 --> 00:01:11,950the first question I'm going to tackle is about CBT therapy for those on the spectrum.1900:01:11,950 --> 00:01:16,340And this stands for cognitive behavioral therapy.2000:01:16,350 --> 00:01:17,310Um,2100:01:17,320 --> 00:01:33,160what this refers to is a talk therapy where the individual in the sessions works with a therapist to identify their inner state and their outer state.2200:01:33,160 --> 00:01:38,050So what are my thoughts and feelings and what are my behaviors?2300:01:38,440 --> 00:01:43,850And those three things are linked sometimes they'll add kind of 1/4 category,2400:01:43,850 --> 00:01:48,350which is what am I feeling physically in the moment.2500:01:48,940 --> 00:01:49,560Um,2600:01:50,340 --> 00:01:59,600so the basis of this therapy is to realize that when we feel angry or afraid,2700:01:59,610 --> 00:02:00,570um,2800:02:00,580 --> 00:02:09,860that a lot of times there are thoughts that we have our beliefs that we have that kind of trigger or feed into.2900:02:10,240 --> 00:02:11,050Um,3000:02:11,740 --> 00:02:16,260this outcome of having an emotion that feels difficult.3100:02:16,840 --> 00:02:17,580So,3200:02:17,590 --> 00:02:27,910if I am really believing and thinking in my head that nothing ever goes right for me.3300:02:28,180 --> 00:02:31,350And let's say I have a flat tire on the way to work.3400:02:31,740 --> 00:02:33,220And um,3500:02:33,230 --> 00:02:45,370I just feel so discouraged and hopeless and I'm not really sure why it hit me that much that a flat tire would do that Well.3600:02:45,370 --> 00:02:47,060In this type of therapy,3700:02:47,070 --> 00:02:49,270the therapist would help the person say,3800:02:49,270 --> 00:02:49,510well,3900:02:49,510 --> 00:02:54,580what kinds of things were you thinking related to that emotion?4000:02:54,590 --> 00:03:03,520So the person is trying to train themselves to become more aware of the thoughts that were linked with that emotion of hopelessness.4100:03:04,450 --> 00:03:05,930And you know,4200:03:05,930 --> 00:03:10,530maybe they realize that they are saying to themselves,4300:03:10,530 --> 00:03:14,780this internal mantra of things are never going to get better.4400:03:14,790 --> 00:03:17,370Nothing happens.4500:03:17,380 --> 00:03:18,300Um,4600:03:18,310 --> 00:03:19,900to give me a break,4700:03:19,910 --> 00:03:21,450nothing goes right for me.4800:03:22,040 --> 00:03:22,960So then,4900:03:22,970 --> 00:03:23,370you know,5000:03:23,370 --> 00:03:28,280the person can then challenge those thoughts and they can say,5100:03:28,280 --> 00:03:28,870well,5200:03:28,880 --> 00:03:33,460is it 100% true that nothing ever goes right for you?5300:03:33,940 --> 00:03:41,040And it's not really that the therapy teaches you to replace negative thoughts with positive thoughts.5400:03:41,050 --> 00:03:45,590It's that it teaches you to replace um,5500:03:45,600 --> 00:03:50,250really skewed thoughts to be more realistic thoughts.5600:03:50,740 --> 00:03:53,640So instead of nothing ever goes right for me,5700:03:53,650 --> 00:03:58,420the therapist would challenge you to get a more realistic statement.5800:03:58,420 --> 00:03:58,790And,5900:03:58,800 --> 00:04:09,030and maybe the statement that you come up with is boy having a flat tire really is not what I wished would happen today.6000:04:09,040 --> 00:04:10,650It is an inconvenience.6100:04:11,140 --> 00:04:11,570Um,6200:04:11,580 --> 00:04:17,960it will pass and there actually have been several good things that have happened lately as well,6300:04:17,970 --> 00:04:22,130so that would be kind of this more realistic thought,6400:04:22,140 --> 00:04:32,290which then affects our emotion to be one of more kind of mild discouragement without a tail spin down into a more despondent state.6500:04:35,940 --> 00:04:45,560The listener was asking whether this approach to therapy can um,6600:04:46,840 --> 00:05:00,160kind of treat the person as a collection of symptoms without a psyche and um being more of a person who's conditioned than behaviorally conditioned um,6700:05:00,540 --> 00:05:02,360in their life experience.6800:05:03,640 --> 00:05:04,430So,7000:05:05,010 --> 00:05:12,840what I would say to that is that it's really quite a bit more complex than just behavioral conditioning.7100:05:12,840 --> 00:05:13,800I know that,7200:05:13,810 --> 00:05:14,120you know,7300:05:14,120 --> 00:05:18,600if you studied skinner or read things about Pavlov's dog,7400:05:18,610 --> 00:05:20,400you can get um,7500:05:20,410 --> 00:05:25,150certainly a pretty extreme view of what conditioning um,7600:05:25,930 --> 00:05:27,380kind of is made up of,7700:05:27,390 --> 00:05:41,760but the CBT therapy really focuses more on helping you identify thought patterns and behavioral patterns that are just not very healthy to your well being and then adjusting those.7800:05:42,340 --> 00:05:42,960Um,7900:05:43,420 --> 00:05:45,010the listener was asking whether,8000:05:45,010 --> 00:05:55,260I think this is a good um type of talk counseling for someone on the autism spectrum.8100:05:55,840 --> 00:05:59,050So what happens is um,8200:05:59,440 --> 00:06:04,150in the therapeutic world CBT is often um,8300:06:04,540 --> 00:06:07,140it's really often recommended for everything.8400:06:07,150 --> 00:06:07,980Um,8500:06:08,010 --> 00:06:12,660it's considered a gold standard in various ways.8600:06:13,140 --> 00:06:19,350Um insurance companies think highly of it and will reimburse for it.8700:06:20,240 --> 00:06:20,940Um,8800:06:20,950 --> 00:06:22,010in reality,8900:06:22,010 --> 00:06:25,740when therapists use CBT therapy,9000:06:25,750 --> 00:06:32,090they're probably mixing in a bit more eclectic approaches um,9100:06:32,100 --> 00:06:35,490with regard to autism.9200:06:35,500 --> 00:06:39,460I know there's even at least one book about CBT and autism,9300:06:40,040 --> 00:06:49,860I I use it um intermittently with some of my clients as a piece of what we're layering in,9400:06:50,340 --> 00:06:57,530but I would say it's not even making up 50% of maybe the approach that I would take.9500:06:57,540 --> 00:07:14,260And my concern with it is this that it's really based on the premise that if we teach someone to retrain their thoughts that they will have a different thought and that then,9600:07:14,530 --> 00:07:14,960you know,9700:07:14,960 --> 00:07:21,760this will relieve their anxiety or this will relieve the depression that they're struggling with.9800:07:22,140 --> 00:07:25,410And I think there's some value to that.9900:07:25,420 --> 00:07:44,910Um my concern about using this and autism is that it doesn't really acknowledge that we're talking about a neurologic base and if you're assuming that you can shift every area of distress in a person's life by just having them think differently.10000:07:44,920 --> 00:07:45,470Um,10100:07:45,480 --> 00:07:47,860I think it really kind of sets up,10200:07:48,740 --> 00:07:49,660um,10300:07:51,240 --> 00:08:01,150expectations that aren't very realistic just by teaching someone to have a different intellectual thought.10400:08:01,840 --> 00:08:02,520So,10500:08:02,530 --> 00:08:23,300the neurology of our intellect and what we know as facts doesn't always hang together with that neurology of experience and what I can pull off in my daily life and there can be this great disconnect that's kind of enhanced in neurologic conditions where,10600:08:23,310 --> 00:08:24,110yeah,10700:08:24,120 --> 00:08:31,580I intellectually know but my nervous system is responding differently.10800:08:31,580 --> 00:08:42,760It's still very heightened in its responses. It still overreacts to sound, you know... it still becomes overwhelmed in crowds... and changing the way I think about10900:08:42,760 --> 00:08:52,860It is not going to be as effective as it might for you know the client with my other example I have a neuro typical neurology.11000:08:53,340 --> 00:09:00,290I tend to think extreme negative thoughts about myself and my circumstance and I happen to have a flat tire.11100:09:00,300 --> 00:09:17,560Well that's different than the student who um can't tolerate being in the school building because it's so neurologically overwhelming and asking them to think differently about how overwhelming it is I think would be inappropriate.11200:09:18,040 --> 00:09:22,060So an example of looking at cognitive distortions and C.11300:09:22,060 --> 00:09:22,340B.11400:09:22,350 --> 00:09:22,860T.11500:09:22,860 --> 00:09:32,950Therapy would be for example that a therapist might point out to a client that they have black and white thinking.11600:09:33,540 --> 00:09:42,140So this experience was all bad and this experience was all good and that's not really capturing reality very well.11700:09:42,150 --> 00:09:48,960So let's think of something that's really um not all good or all bad but in the middle.11800:09:49,340 --> 00:09:58,320Well in the autistic client that's a bit of a problem because their neurology does lean toward black and white thinking or categorical thinking.11900:09:58,330 --> 00:10:00,150Uh this is all good.12000:10:00,150 --> 00:10:23,670This is all bad or this was a success and this was a failure and there are degrees to which individuals with the autistic neurology can consider more abstract and complicated kinds of um beliefs and thoughts but in general that's going to be very likely neurologically difficult.12100:10:23,680 --> 00:10:25,840And so when you get in that area,12200:10:25,850 --> 00:10:36,910it's kind of like sending someone to change their thought process uh to help them see colors better.12300:10:36,920 --> 00:10:37,860So,12400:10:37,870 --> 00:10:38,660um,12500:10:38,670 --> 00:10:41,160you're not very good at color recognition.12600:10:41,160 --> 00:10:51,860We're gonna examine all your thoughts and try to get you back on track with your peers when in actuality this person is color blind.12700:10:52,140 --> 00:10:52,480Well,12800:10:52,480 --> 00:10:56,310you're not going to improve color blindness with cognitive behavioral therapy.12900:10:56,640 --> 00:11:01,160You're not going to improve diabetes with cognitive behavioral therapy.13000:11:01,170 --> 00:11:11,180You may be able to work on some of their thoughts about their health, the way they react and engage in diet and that kind of thing.13100:11:11,180 --> 00:11:13,460But um,13200:11:13,840 --> 00:11:14,240you know,13300:11:14,240 --> 00:11:16,880I think if we're using cognitive behavioral therapy,13400:11:16,880 --> 00:11:19,860we should be very aware of its strengths.13500:11:20,240 --> 00:11:20,750Again,13600:11:20,750 --> 00:11:26,490I do use that at times and then also its limitations within different um,13700:11:26,500 --> 00:11:27,730patient groups.13800:11:27,740 --> 00:11:30,960So that would be my thought about that.13900:11:31,740 --> 00:11:38,660So I would focus more in therapy on helping people recognize their neurologic patterns,14000:11:38,660 --> 00:11:40,500increasing that self awareness,14100:11:40,510 --> 00:11:46,430creating strategies that will help the neurology kind of move forward in those areas.14200:11:46,430 --> 00:11:50,540So what are strategies that you can calm your nervous system with?14300:11:50,550 --> 00:11:51,450For example,14400:11:53,140 --> 00:11:54,760that was a great question.14500:11:54,760 --> 00:11:56,050I appreciate that.14600:11:57,340 --> 00:11:57,730Um,14700:11:57,730 --> 00:12:01,560I also had a question from a mother who asked,14800:12:02,140 --> 00:12:03,010um,14900:12:03,020 --> 00:12:03,870you know,15000:12:03,880 --> 00:12:18,360what could I do when my young adult child with a diagnosis is really resisting talking about autism and feeling categorized and kind of pigeonholed.15100:12:18,940 --> 00:12:19,480Um,15200:12:19,490 --> 00:12:28,260if that discussion comes up feeling sick of everything being described through the autistic lens and therefore dehumanized.15300:12:30,040 --> 00:12:33,060So this is such an individualized,15400:12:33,840 --> 00:12:34,950um,15500:12:34,960 --> 00:12:36,490internal state,15600:12:36,500 --> 00:12:36,900right?15700:12:36,900 --> 00:12:42,750We all have kind of different reactions of what we can take in and process how we feel about things.15800:12:43,140 --> 00:12:49,760And essentially this person seems to be saying that they don't really feel seen and heard.15900:12:50,140 --> 00:12:50,700Um,16000:12:50,700 --> 00:12:52,660and that's an awful feeling.16100:12:53,240 --> 00:12:53,790Um,16200:12:53,800 --> 00:12:56,360even if people around them feel like,16300:12:56,360 --> 00:12:56,770yes,16400:12:56,770 --> 00:12:57,870I do see you.16500:12:57,870 --> 00:12:58,980I do hear you.16600:12:58,990 --> 00:13:00,100Um,16700:13:00,110 --> 00:13:00,650you know,16800:13:00,650 --> 00:13:03,460that internal feeling is still difficult.16900:13:05,440 --> 00:13:17,160I think the best outcomes usually are when we allow people the freedom and space to process things differently than we are.17000:13:17,540 --> 00:13:18,140Um,17100:13:18,150 --> 00:13:20,450I have to say that I don't,17200:13:20,940 --> 00:13:21,740um,17300:13:21,750 --> 00:13:22,260you know,17400:13:22,260 --> 00:13:36,940listeners who've been with me for a while probably know that I have an adolescent son on the spectrum and I have to say that I don't really talk about autism that much at home as far as using that word.17500:13:36,950 --> 00:13:39,600So maybe this will help.17600:13:39,610 --> 00:13:40,240Um,17700:13:40,250 --> 00:13:45,220I don't think we have to bring up the term all the time,17800:13:45,230 --> 00:13:46,790but um,17900:13:46,790 --> 00:13:49,910it certainly is something people are free to talk about.18000:13:49,910 --> 00:13:51,350So we give them that freedom.18100:13:51,540 --> 00:13:55,000But what we tend to talk about more in our household is,18200:13:55,240 --> 00:13:55,570you know,18300:13:55,570 --> 00:13:57,030what do you need today?18400:13:57,040 --> 00:13:58,780What does your system need?18500:13:58,790 --> 00:14:01,590And I talk about what my system needs.18600:14:01,590 --> 00:14:02,550And then I ask,18700:14:02,550 --> 00:14:02,780you know,18800:14:02,780 --> 00:14:03,520my husband,18900:14:03,520 --> 00:14:03,870how,19000:14:03,880 --> 00:14:05,740how have things gone for you,19100:14:05,740 --> 00:14:06,590what do you need?19200:14:06,600 --> 00:14:20,600And we try to learn that kind of talk as a family and what my son needs is going to be different than what my husband needs and what I need just because we're individuals and his individuality,19300:14:20,610 --> 00:14:23,730My son's includes the autistic neurology.19400:14:23,730 --> 00:14:25,410It also includes other things.19500:14:25,420 --> 00:14:28,110He's at a different season of life than I am.19600:14:28,120 --> 00:14:29,000His,19700:14:29,010 --> 00:14:29,680um,19800:14:29,680 --> 00:14:34,770school and peer kind of demands on him are different.19900:14:34,780 --> 00:14:36,670The pace of his day is different.20000:14:36,670 --> 00:14:38,940His physical state is different.20100:14:38,940 --> 00:14:39,630And so,20200:14:39,640 --> 00:14:40,250uh,20300:14:40,260 --> 00:14:43,450we kind of process it that way that,20400:14:43,840 --> 00:14:44,350um,20500:14:44,360 --> 00:14:46,560we're each individuals,20600:14:47,440 --> 00:14:47,990um,20700:14:47,990 --> 00:14:57,050and how we're doing is important and how can we work as a group to help each other get what each person needs.20800:14:57,540 --> 00:15:00,290And then there will be some things that,20900:15:00,300 --> 00:15:00,640you know,21000:15:00,640 --> 00:15:02,310are just important to discuss.21100:15:02,310 --> 00:15:12,510We can't shy away from something that's really important for their health or wellness because we don't want to process things about autism.21200:15:12,510 --> 00:15:13,520But um,21300:15:13,520 --> 00:15:18,450a lot of times we can just talk about each person's individuality.21400:15:18,450 --> 00:15:18,850Like,21500:15:19,340 --> 00:15:19,720um,21600:15:19,720 --> 00:15:23,660it looks to me like you've had a really rough day,21700:15:24,240 --> 00:15:26,050would it feel better to talk about it?21800:15:26,050 --> 00:15:27,450Or do you need alone time?21900:15:28,240 --> 00:15:30,040Or you could say,22000:15:30,050 --> 00:15:31,270you know,22100:15:31,280 --> 00:15:33,170we have a lot of stuff coming up,22200:15:33,170 --> 00:15:35,070You've got college applications,22300:15:35,070 --> 00:15:37,030You've got some job interviews.22400:15:37,040 --> 00:15:39,840It's really important to nail some of this down.22500:15:39,850 --> 00:15:44,760But I'm wondering whether you'd like to process that face to face,22600:15:44,940 --> 00:15:49,610whether you'd like to email together about it and you can put together some thoughts.22700:15:50,640 --> 00:15:51,350Um,22800:15:51,360 --> 00:15:51,990you know,22900:15:51,990 --> 00:15:58,420so sometimes again you can process and say this topic is kind of non negotiable,23000:15:58,420 --> 00:16:00,260we have to figure something out,23100:16:00,940 --> 00:16:05,050but how could we talk about this in a way that meets where you're at.23200:16:05,740 --> 00:16:06,530Um,23300:16:06,540 --> 00:16:13,840and also just being sure to talk about a lot of things not related to the nervous system that um,23400:16:13,850 --> 00:16:15,570we give each other compliments,23500:16:15,570 --> 00:16:22,340like you're really good at this and I just I wish I had your eye for detail.23600:16:22,340 --> 00:16:25,560I wish I was as artistic as you are.23700:16:25,570 --> 00:16:29,960I wish um I had some of the spunk that I see in you,23800:16:29,960 --> 00:16:39,160I really love that and this helps them know that we are seeing them as a whole person and we do love them and value them.23900:16:39,640 --> 00:16:40,270Um,24000:16:40,280 --> 00:16:51,660so those can be a few ways that we can round out what you don't want to do is sometimes when someone shuts down or resist or walks away,24100:16:52,240 --> 00:16:57,070what you don't want to do is then have some chasing after them.24200:16:57,740 --> 00:17:04,500This is a really difficult family dynamic and I see it in couples and families and in the workplace,24300:17:04,510 --> 00:17:13,290it's just a very um common thing if someone becomes quiet that we're trying to talk to and they withdraw.24400:17:13,300 --> 00:17:18,840We can have some chasing behaviors whether that's actually physically following them,24500:17:18,850 --> 00:17:20,350whether it's saying,24600:17:20,740 --> 00:17:21,180you know,24700:17:21,190 --> 00:17:21,660no,24800:17:21,660 --> 00:17:23,240you have to talk about this,24900:17:23,240 --> 00:17:24,360this is important.25000:17:26,240 --> 00:17:30,570That kind of chasing in the relationship usually just makes things worse.25100:17:30,600 --> 00:17:31,460So,25200:17:31,840 --> 00:17:34,960um I would focus more on strategy.25300:17:34,960 --> 00:17:42,850Like I can see this conversation is really tough um how and when would you like to process this?25400:17:45,540 --> 00:17:46,350Other than that,25500:17:46,350 --> 00:17:58,010it may just be helpful for the family or the parent or the individual to have a counselor that they can process individualized recommendations with.25600:17:58,010 --> 00:17:59,110That's a tough one.25700:17:59,220 --> 00:18:03,270It's a tough season and difficult things to talk about.25800:18:05,540 --> 00:18:09,930Um the next question from a listener is kind of related,25900:18:09,930 --> 00:18:14,660it's about parenting and this time it's about parenting in neuro diverse couples,26000:18:14,660 --> 00:18:20,120which means that One of the parents is on the spectrum and one is not.26100:18:20,130 --> 00:18:22,710So um you know,26200:18:22,710 --> 00:18:28,950there are differences in their nervous systems and and what they lean toward what their strengths are,26300:18:29,340 --> 00:18:33,270what kinds of things challenge them.26400:18:34,040 --> 00:18:41,780And so this listener is asking this as a parent and part of a couple.26500:18:41,780 --> 00:18:46,670So they're trying to parent their kids and their spouse,26600:18:46,680 --> 00:18:49,750I'm not sure who is who,26700:18:49,750 --> 00:18:55,620but one of them has that autistic neurology and the person is pointing out that,26800:18:55,620 --> 00:18:56,480you know,26900:18:56,500 --> 00:19:01,230parenting is a lot of just loud,27000:19:01,230 --> 00:19:02,600chaotic,27100:19:02,610 --> 00:19:03,710messy,27200:19:03,720 --> 00:19:06,700unexpected things going on.27300:19:06,700 --> 00:19:10,460You've got the need to communicate as parents.27400:19:10,840 --> 00:19:13,300Um the need to be consistent.27500:19:13,310 --> 00:19:15,670You've got sensory overload in the house,27600:19:15,670 --> 00:19:19,170you've got distractions and changes to routine.27700:19:19,170 --> 00:19:30,560So that is a great point that if anything is going to kind of challenge um the neuro diverse couple this,27800:19:30,570 --> 00:19:33,430this is really difficult.27900:19:33,440 --> 00:19:38,620And so my brief answer is I would say a couple of things.28000:19:38,620 --> 00:19:49,070One is what I just talked about for the other listener that sometimes really being direct and forthright about where are you at today?28100:19:49,070 --> 00:19:50,060What do you need?28200:19:50,440 --> 00:19:52,140Or boy,28300:19:52,140 --> 00:19:56,560it looks like this kid is really melting down a lot.28400:19:56,940 --> 00:19:58,440That's the state they're in.28500:19:58,440 --> 00:20:00,960How are we going to get this?28600:20:01,340 --> 00:20:05,520Kids needs met and this other one has homework to do.28700:20:05,520 --> 00:20:06,450How are we gonna?28800:20:06,460 --> 00:20:11,470So kind of taking a survey of the land and we all need to do that,28900:20:11,470 --> 00:20:19,990but sometimes we forget to do it kind of explicitly... we think our spouse will see what needs to be done or agree with us.29000:20:19,990 --> 00:20:26,630And sometimes when couples go to counseling and maybe they're talking about parenting strategies,29100:20:27,040 --> 00:20:30,820um you kind of get the sense that one of the partners is saying,29200:20:30,830 --> 00:20:33,010why can't you be like me?29300:20:33,020 --> 00:20:33,590You know,29400:20:33,590 --> 00:20:35,470why can't you parent like me?29500:20:35,470 --> 00:20:41,180Why can't you see what needs to be done and kind of do it the way I would do it.29600:20:41,670 --> 00:20:49,270So part of that of success and that kind of role is having this increased self awareness.29700:20:49,740 --> 00:20:50,370Okay,29800:20:50,370 --> 00:20:51,810I really get that,29900:20:51,810 --> 00:20:54,030your neurology is different,30000:20:54,090 --> 00:20:55,860these are your strengths,30100:20:56,240 --> 00:21:12,460these are the things that challenge you and that's different from my neurology and so sometimes what can help once you have this increasing awareness and these open discussions about how you each work differently.30200:21:13,040 --> 00:21:19,350Um one of the things that can help is to have a huddle in the morning and in the evening by huddle,30300:21:19,350 --> 00:21:25,770I just mean like there's kind of a brief checking in about the status quo,30400:21:26,240 --> 00:21:26,860like,30500:21:27,240 --> 00:21:28,070what's your day,30600:21:28,070 --> 00:21:29,150like today?30700:21:29,160 --> 00:21:31,950Uh do you have everything you need,30800:21:32,440 --> 00:21:34,950this kid needs to be picked up,30900:21:34,960 --> 00:21:35,190blah,31000:21:35,190 --> 00:21:35,800blah blah.31100:21:35,810 --> 00:21:36,280So,31200:21:36,290 --> 00:21:40,340so there's this coming together in the morning to say,31300:21:40,340 --> 00:21:40,700you know,31400:21:40,700 --> 00:21:41,060again,31500:21:41,060 --> 00:21:42,770like in a sports analogy,31600:21:42,780 --> 00:21:52,170um huddle is this image of um the sports players getting together on the field and saying this is the play we're going to use.31700:21:52,560 --> 00:22:00,430It's so funny because I remember one of our um high school friends at a reunion and he was saying,31800:22:00,440 --> 00:22:01,340you know,31900:22:01,350 --> 00:22:04,950once you go from two kids to three kids,32000:22:04,960 --> 00:22:05,570you know,32100:22:05,580 --> 00:22:08,150it's like you have to go to a zone defense,32200:22:08,160 --> 00:22:11,460you can't be one parent on one kids anymore,32300:22:11,470 --> 00:22:13,060so that's the kind of thing,32400:22:13,060 --> 00:22:13,970like in the morning,32500:22:13,970 --> 00:22:15,260what's our game plan?32600:22:15,740 --> 00:22:17,960How are we going to divide this up?32700:22:18,740 --> 00:22:21,250Um and then in the evening as well,32800:22:21,250 --> 00:22:23,960and sometimes in the evening it's even more important,32900:22:24,340 --> 00:22:31,930so you've had this whole day of experience and you're coming together and there's these things that need to be done.33000:22:31,940 --> 00:22:34,960So part of the evening huddle can be,33100:22:35,740 --> 00:22:51,990my day at work was unexpectedly horrible and I feel like I'm about to collapse and I also see that the kids are laying on the floor screaming and somebody's drawing on the wall with crayons and you,33200:22:52,000 --> 00:22:54,670you're crying and um,33300:22:55,140 --> 00:22:57,580so what,33400:22:57,590 --> 00:22:58,930let's triage,33500:22:58,940 --> 00:23:05,600what is the most important thing we have to do and what do you need?33600:23:05,610 --> 00:23:09,370This is what I need And then getting a game plan,33700:23:09,430 --> 00:23:16,670like I need 20 minutes of no touching and talking and anything and then I'm going to come back out,33800:23:17,340 --> 00:23:20,010you take the kids for a ride and I'm gonna clean,33900:23:20,020 --> 00:23:20,740you know,34000:23:20,750 --> 00:23:23,880so that kind of thing also,34100:23:23,880 --> 00:23:27,430I think that a lot of times when we have this increase of awareness,34200:23:28,240 --> 00:23:38,850we can assign tasks based on the person's strengths rather than hoping that everybody does all of the stuff.34300:23:39,340 --> 00:23:40,290So,34400:23:40,300 --> 00:23:40,970you know,34500:23:40,980 --> 00:23:50,960one spouse may love doing laundry and organizing and throwing things away and this feels really satisfying to them,34600:23:51,340 --> 00:23:55,150but they really have a tough time giving the kids a bath,34700:23:55,150 --> 00:23:57,140like it's sensory overload.34800:23:57,140 --> 00:23:59,260They struggle a lot.34900:23:59,740 --> 00:24:02,620So if there is a way to integrate in,35000:24:03,040 --> 00:24:03,680you know,35100:24:03,690 --> 00:24:05,770one parent might say,35200:24:06,240 --> 00:24:06,750you know,35300:24:06,760 --> 00:24:11,570giving the kids a bath is not hard for me at all.35400:24:11,580 --> 00:24:13,210So I'll do that,35500:24:13,220 --> 00:24:14,500you do what,35600:24:14,510 --> 00:24:17,930what you connect with and then these other stuff,35700:24:17,940 --> 00:24:18,230you know,35800:24:18,230 --> 00:24:19,670the other things that we both,35900:24:20,140 --> 00:24:20,970hey,36000:24:20,980 --> 00:24:25,560we'll just try to share the load and get through some of the stuff we hate.36100:24:26,940 --> 00:24:30,770Um another way is to reduce talking.36200:24:31,140 --> 00:24:34,860I think one of the pieces of advice that I give,36300:24:35,740 --> 00:24:41,950um family members the most is to talk less.36400:24:42,640 --> 00:25:00,350Um I think our go to strategy for improving things is often talking about it again and again or asking or questioning or um nagging or talking and a lot of times for the autistic that makes a difficult situation like more overwhelming.36500:25:00,740 --> 00:25:04,660So you want me to do this and I have to socially communicate about it.36600:25:04,660 --> 00:25:05,880That's really dreaming.36700:25:07,540 --> 00:25:10,860So one way to reduce talking,36800:25:11,340 --> 00:25:15,520you can have a code word that if a person,36900:25:15,520 --> 00:25:18,860one of the parents is about to just meltdown,37000:25:18,860 --> 00:25:20,270they're in dire straits,37100:25:20,270 --> 00:25:26,890they need to stop this conversation or they need to stop being in the room with the kids.37200:25:27,060 --> 00:25:28,960You guys can use a code word.37300:25:29,340 --> 00:25:32,330So you could pick something that's funny,37400:25:32,330 --> 00:25:39,450you can pick something that's um an inside memory or something and if someone says that word,37500:25:40,040 --> 00:25:41,660you don't have to talk it through.37600:25:41,660 --> 00:25:45,560Everybody just knows that that person needs to leave and regroup.37700:25:46,140 --> 00:25:48,100So it could be pineapple,37800:25:48,100 --> 00:25:56,770it could be hawaii or whatever has meaning and then you can cut down some of that talking in the moment.37900:25:57,940 --> 00:26:02,690Also a way to reduce talking is to use refrigerator magnets.38000:26:02,700 --> 00:26:08,230So sometimes people and families will want to know how everyone's doing,38100:26:08,230 --> 00:26:12,010but this conversation about how I'm doing and how are you doing?38200:26:12,010 --> 00:26:13,410That's really draining.38300:26:13,420 --> 00:26:15,520So for instance,38400:26:15,520 --> 00:26:23,890you could use Refrigerator magnets that are from 1 to 10 and you can have it represent anything.38500:26:23,890 --> 00:26:31,110So maybe it's your stress level that everybody has a column on the fridge where they can put their number.38600:26:31,120 --> 00:26:47,760And so if someone comes home from school and they walk in and they don't talk and they pass mom or dad and they put that Number seven out of 10 on there and walk to their room and shut the door.38700:26:48,080 --> 00:26:54,160That is a way of communicating that my day was really overwhelming and I need to be alone.38800:26:54,740 --> 00:26:58,360So the parents feel like they have a sense of what just happened.38900:26:58,740 --> 00:27:00,560There's some communication,39000:27:00,570 --> 00:27:03,810but we don't have to sit down and socially communicate,39100:27:03,810 --> 00:27:05,360which is also draining.39200:27:07,140 --> 00:27:07,510Um,39300:27:07,510 --> 00:27:11,210and also just thinking about as a couple,39400:27:11,220 --> 00:27:13,170you can't always plan,39500:27:13,640 --> 00:27:14,400um,39600:27:14,410 --> 00:27:17,190all the things that happen in a family.39700:27:17,190 --> 00:27:17,660And,39800:27:18,040 --> 00:27:19,570but sometimes,39900:27:19,580 --> 00:27:20,280you know,40000:27:20,290 --> 00:27:21,670when you're together,40100:27:21,670 --> 00:27:22,730newly as a couple,40200:27:22,730 --> 00:27:24,060you can talk about,40300:27:24,540 --> 00:27:24,880oh,40400:27:24,880 --> 00:27:26,280you want six kids.40500:27:26,280 --> 00:27:26,900Well,40600:27:27,140 --> 00:27:27,960I want,40700:27:28,340 --> 00:27:29,860I'm thinking I would want one,40800:27:29,860 --> 00:27:33,250I think it would be really overwhelming for me,40900:27:33,260 --> 00:27:33,720uh,41000:27:33,720 --> 00:27:44,760and and to try to make plans for your family that take into account everyone's temperament and personality and nervous system.41100:27:49,240 --> 00:27:53,460Another listener asked about things related to the workplace.41200:27:53,940 --> 00:27:54,540Um,41300:27:54,550 --> 00:27:56,740one question was about,41400:27:56,750 --> 00:27:57,220you know,41500:27:57,220 --> 00:28:07,480it's really difficult to know how to negotiate about raises or other issues in the workplace because I feel like I'm not sure if I'm being taken advantage of,41600:28:07,480 --> 00:28:14,270I'm not sure if I'm asking for too much or too little and I don't know how far to push things or how to say it.41700:28:14,940 --> 00:28:16,440Um and you know,41800:28:16,440 --> 00:28:19,530this person feels like as an autistic individual,41900:28:19,530 --> 00:28:19,820it,42000:28:19,830 --> 00:28:25,990it feels harder to um just get a feel for the room like what is politics,42100:28:25,990 --> 00:28:26,650what is,42200:28:26,660 --> 00:28:29,950what should not be said in this room?42300:28:29,960 --> 00:28:32,270Um and you know,42400:28:32,270 --> 00:28:35,030that is a really good point.42500:28:35,040 --> 00:28:40,850A lot of negotiation is getting a feel for how hard to push.42600:28:42,140 --> 00:28:42,610You know,42700:28:42,610 --> 00:28:53,860I think taking advantage of all the data approaches that are available in this age of technology can really help in that regard.42800:28:53,870 --> 00:28:57,690I'm not sure about different countries or cultures,42900:28:57,690 --> 00:29:01,210but In the United States there's been a big push,43000:29:01,210 --> 00:29:03,310particularly over the last 10 years,43100:29:03,310 --> 00:29:13,540I would say um to be very data oriented in um comparing salaries across the region,43200:29:13,540 --> 00:29:15,150across the United States,43300:29:15,430 --> 00:29:17,770there's more available on the internet.43400:29:18,740 --> 00:29:20,950Um as far as benchmarking,43500:29:20,950 --> 00:29:22,360what is common,43600:29:22,940 --> 00:29:27,460um I really relate to this listeners challenge.43700:29:27,460 --> 00:29:29,800I'm not really good um,43800:29:29,810 --> 00:29:31,130at those things either.43900:29:31,130 --> 00:29:34,720So what I tend to do is every five years,44000:29:34,720 --> 00:29:46,170there's um an article published about common um benchmarks for neuropsychology salaries and then of course our workplace benchmarks,44100:29:46,170 --> 00:29:46,860things.44200:29:46,940 --> 00:29:55,650I'm hoping that in the future it will become even more transparent that when you see a job ad it will just have the salary in the ad.44300:29:55,650 --> 00:30:10,980And again I don't know if other countries do that but there it's almost like a card game where you're not quite sure um what benchmark the employer might be using,44400:30:10,980 --> 00:30:13,970they don't show all their cards necessarily.44500:30:13,980 --> 00:30:21,920Um But it I do think that as a strategy it can help anyone,44600:30:21,920 --> 00:31:07,450particularly someone that wants to go by data to kind of have data to put it in a proposal and to hand that in to your boss to say you know this is some data that I found and I wanted to talk about that with you and I would also suggest that you give data about yourself and so you can kind of think of um like a state of the union address where um you can give your boss a summary of all the things that you have accomplished um either that year or in the past five years and bosses know that in the moment.44700:31:07,460 --> 00:31:13,600But I do find that giving the summary Snapchat and highlighting all the things you've done.44800:31:14,240 --> 00:31:23,850Um That's data as well and sometimes you know your boss just cannot have all of that in their head.44900:31:23,860 --> 00:31:27,990And they'll often say things like oh my gosh that's right,45000:31:27,990 --> 00:31:32,380you did this and that and you know for someone in sales,45100:31:32,380 --> 00:31:36,450they can say I earned the company this amount of money etcetera.45200:31:36,640 --> 00:31:44,300So you can hand in data points both about salary benchmarking and also highlighting how you've benefited the company,45300:31:44,300 --> 00:31:46,350what kinds of things you've accomplished.45400:31:46,360 --> 00:31:48,240Um So I would start there,45500:31:48,250 --> 00:31:51,560just try try a very data oriented approach.45600:31:53,240 --> 00:31:58,290Another question was about how to pursue accommodations in the workplace.45700:31:58,300 --> 00:32:00,990Um They seem so open ended,45800:32:00,990 --> 00:32:04,620it's difficult to know what's reasonable as a request,45900:32:04,620 --> 00:32:05,480who to talk to,46000:32:05,480 --> 00:32:06,160etcetera.46100:32:06,840 --> 00:32:07,250Um,46200:32:07,260 --> 00:32:15,950so I would say a few things you I would look on the internet for common accommodations for autism or other things.46300:32:15,950 --> 00:32:21,750And the site that I often go to to look is called ask Jan dot org.46400:32:21,840 --> 00:32:25,050JAN stands for job accommodation Network.46500:32:25,060 --> 00:32:25,430Again,46600:32:25,430 --> 00:32:27,170this is in the United States.46700:32:27,640 --> 00:32:28,080Um,46800:32:28,080 --> 00:32:29,930and again,46900:32:29,930 --> 00:32:31,900in the line of having data,47000:32:31,910 --> 00:32:40,340this gives a lot of common accommodations that could be requested for a variety of conditions.47100:32:40,350 --> 00:32:47,950So you would type in autism as you as the condition that you want to ask for accommodations under.47200:32:47,950 --> 00:32:57,060So you have to have kind of a um something that's considered qualifying for that accommodation.47300:32:57,920 --> 00:33:03,820And then what I would say is Jobs want these accommodations to be individualized.47400:33:03,820 --> 00:33:09,100They don't want to just have a list of 200 accommodations that you want.47500:33:09,100 --> 00:33:24,570So I would say look through those and think about your own self awareness and areas that are particularly easy or difficult for you and try try some of the strategies if you can.47600:33:24,580 --> 00:33:25,540So,47700:33:25,550 --> 00:33:26,460um,47800:33:26,840 --> 00:33:35,080if you're going to ask for an accommodation to where noise canceling headphones in your cubicle while you're working,47900:33:35,090 --> 00:33:36,410um you know,48000:33:36,410 --> 00:33:41,700try some of that at home and see if those headphones really help you.48100:33:41,710 --> 00:33:43,760So you can tie it into,48200:33:43,760 --> 00:33:48,830let's say you've gotten feedback that you're really struggling with timeliness,48300:33:48,840 --> 00:33:50,850that things are taking too long,48400:33:50,940 --> 00:33:53,600and that's part of that executive function,48500:33:53,610 --> 00:33:55,330piece of autism.48600:33:55,340 --> 00:33:58,220And you can say,48700:33:58,230 --> 00:33:58,870you know,48800:33:58,870 --> 00:34:02,860I realize um that this has been a struggle for me.48900:34:02,860 --> 00:34:14,300I really listen to that feedback and I want to improve that the strategy that I'd like to pursue as to where these noise canceling headphones,49000:34:14,310 --> 00:34:17,210because it really helps me focus.49100:34:17,220 --> 00:34:22,490Um I don't have to be processing through all of the noise around me.49200:34:22,500 --> 00:34:25,780Uh and then um you know,49300:34:25,790 --> 00:34:30,220if they say yes,49400:34:30,220 --> 00:34:31,130that's great,49500:34:31,140 --> 00:34:37,060you can talk to them about why it kind of just depends on what kind of relationship you have there.49600:34:37,440 --> 00:34:39,230If they just come back with,49700:34:39,230 --> 00:34:39,410well,49800:34:39,410 --> 00:34:41,730that's not part of our dress code.49900:34:41,740 --> 00:34:47,960Uh then you can present documentation of your diagnosis and just say,50000:34:47,960 --> 00:34:53,750how could I get this formalized that I'm formally asking for this accommodation.50100:34:54,840 --> 00:35:00,660They'll probably send you through to HR to human resources and you can do it that way.50200:35:04,160 --> 00:35:09,670There was a question about preventing seizure episodes that are non epileptic.50300:35:10,240 --> 00:35:20,660Um Non epileptic means that the seizures look like seizures when people are watching and observing,50400:35:21,040 --> 00:35:25,610um but they're not electrical so that when the person is hooked up to the E.50500:35:25,610 --> 00:35:25,730E.50600:35:25,730 --> 00:35:26,180G.50700:35:26,180 --> 00:35:28,580And they see the manifestation of the seizure,50800:35:28,580 --> 00:35:32,170they can see that it's not electrically generated through the brain.50900:35:32,540 --> 00:35:43,060And what that means is that it's non epileptic and these are things that are triggered by stress and really being overwhelmed or traumatized.51000:35:43,070 --> 00:35:46,760And um I do have a blog post on that.51100:35:46,770 --> 00:35:56,390Um So I will put the link in the show notes and also I would recommend listening to the podcast episodes.51200:35:56,400 --> 00:36:07,350We have some series about how to help people with regulation and that's how I would address these non epileptic seizures that these are signs.51300:36:07,350 --> 00:36:12,240These are clues that the person is dis regulated that they're overwhelmed.51400:36:12,430 --> 00:36:15,790So rather than trying to talk them through,51500:36:15,790 --> 00:36:24,160I would use the recommendations in the regulation series and I will link to the first of those series.51600:36:24,530 --> 00:36:29,150I think there's four in that podcast series here in the notes.51700:36:31,530 --> 00:37:01,440Um It should be noted too if it interests you that this phenomenon of non epileptic seizures is more common for autistics than for those who are you're a typical Finally there was a question about why diet and motivation for exercise can become harder with age for the autistic who's entering um Their 40's or 50s.51800:37:01,830 --> 00:37:16,210Um I think that that's really tied in a lot with the executive function issue we talked about where um and I guess I'm referring to the podcast series on behavioral motivation,51900:37:16,220 --> 00:37:18,320exhaustion getting going.52000:37:18,330 --> 00:37:27,660So the center and front part of the brain is in charge of executive function that's always somewhat impacted or involved in autism.52100:37:27,930 --> 00:37:32,170And part of that has to do with what's called behavioral initiation.52200:37:32,180 --> 00:37:37,000So how do I get started from this stopped state?52300:37:37,000 --> 00:37:38,240It's really hard.52400:37:38,830 --> 00:37:45,870Not only is the individual probably likely to have difficulty with the getting going part of behavior anyway,52500:37:45,880 --> 00:37:50,320but executive function can become more difficult.52600:37:50,330 --> 00:37:50,650Um,52700:37:50,650 --> 00:37:53,950less efficient and easy with age.52800:37:54,330 --> 00:37:58,760We talked about this in our aging episode where um,52900:37:58,770 --> 00:38:03,920executive function is always going to be a bit harder as people age.53000:38:03,920 --> 00:38:06,650So their thought process might feel slower.53100:38:06,660 --> 00:38:08,840They can't multitask as well.53200:38:08,840 --> 00:38:16,340Some of the details of their memory gets harder and also this behavioral activation can also be impacted.53300:38:17,520 --> 00:38:26,170Another thing I think that makes this difficult and autism is that for many people on the spectrum,53400:38:26,250 --> 00:38:32,460it's difficult to think abstractly about likely outcomes.53500:38:32,920 --> 00:38:33,340Um,53600:38:33,350 --> 00:38:40,330if you ask someone intellectually what's likely to happen if you don't take your medicine or if you don't exercise,53700:38:40,720 --> 00:38:43,360sometimes they can recite a bunch of facts,53800:38:43,360 --> 00:38:49,640but it doesn't really feel real unless they've actually already experienced it.53900:38:50,020 --> 00:38:52,860So if I say that to someone,54000:38:52,870 --> 00:38:55,710uh there may be an autistic individual who says,54100:38:55,710 --> 00:38:55,880well,54200:38:55,880 --> 00:38:57,590how would I know what would happen?54300:38:57,600 --> 00:38:58,950It hasn't happened yet.54400:38:59,420 --> 00:39:03,000Other people can state facts that they've learned,54500:39:03,010 --> 00:39:06,310but in a lot of ways those feel fear radical,54600:39:06,310 --> 00:39:08,900they don't really feel real.54700:39:08,910 --> 00:39:12,360Um and for example,54800:39:12,370 --> 00:39:14,900I have had patients who say,54900:39:14,900 --> 00:39:18,430well I took cholesterol medication for a month,55000:39:18,440 --> 00:39:20,390but I just stopped it.55100:39:20,400 --> 00:39:21,690I didn't feel any better,55200:39:21,690 --> 00:39:22,980I didn't feel anything.55300:39:22,990 --> 00:39:31,360Um so this conceptual hypothesis that it's probably doing something important,55400:39:31,370 --> 00:39:35,030even though you don't feel it or see it or experience it,55500:39:35,420 --> 00:39:35,740you know,55600:39:35,740 --> 00:39:43,650that can just be really difficult to grab hold of um a few suggestions if you want to try them.55700:39:44,020 --> 00:39:47,150Um I love time timers,55800:39:47,160 --> 00:39:55,030you can get the app or you can buy the physical time timer on places like amazon or other websites on the internet.55900:39:55,520 --> 00:39:57,580A time timer is a visual timer.56000:39:57,580 --> 00:40:01,620So if you have difficulty um with time management,56100:40:01,620 --> 00:40:06,700if you have difficulty getting going or transitioning from one activity to another,56200:40:06,710 --> 00:40:11,130like I'm not exercising now and I have to transition to exercise,56300:40:11,510 --> 00:40:28,730um you can set that time timer and see the visual time disappear and for some reason it just feels very real and compelling and concrete in a way that looking at digits or a clock face doesn't quite feel.56400:40:28,810 --> 00:40:30,320I love these,56500:40:30,330 --> 00:40:32,910I use them in my workplace.56600:40:32,920 --> 00:40:34,830Um I use them at home.56700:40:35,210 --> 00:40:44,140Um so you could set the time timer for when you're gonna start the exercise and also for when you're going to end.56800:40:44,610 --> 00:40:57,930So I only have to do this until the red disappears and then it's a very concrete achievable kind of goal as opposed to this feeling like,56900:40:57,940 --> 00:40:58,340oh,57000:40:58,340 --> 00:40:59,890I have to start this and when,57100:40:59,900 --> 00:41:20,020when is it going to end another technique that I think can make things more concrete and doable is to um set up something that feels real instead of this concept that exercises in some way helpful.57200:41:20,030 --> 00:41:22,360And of course as we age,57300:41:22,370 --> 00:41:29,620we see the results of that less like we we exercise and exercise and eat right and gosh,57400:41:29,630 --> 00:41:34,410my body still doesn't look the way that I would like it to and I'm not really sure what this is doing,57500:41:34,410 --> 00:41:37,110but I have faith that it's good.57600:41:37,120 --> 00:41:45,650Um so we can make it more concrete by using things like challenges um or prompts to move.57700:41:45,650 --> 00:41:47,980So there's a lot of technology these days,57800:41:47,980 --> 00:41:50,300like um smartwatches,57900:41:50,310 --> 00:41:57,180they can vibrate once an hour just to remind us to move or get up and walk.58000:41:57,190 --> 00:42:02,590Um there are challenges on the smartwatches,58100:42:02,600 --> 00:42:03,600different ones,58200:42:03,600 --> 00:42:04,770call them different things,58300:42:04,770 --> 00:42:06,420but there can be games,58400:42:06,430 --> 00:42:17,990there might be like a fitness bingo or these things where you get icons lit up if you walk a certain number of steps or have your heart rate going as active.58500:42:18,000 --> 00:42:21,430So those kind of things can make it concrete and fun.58600:42:21,440 --> 00:42:24,510Like I don't know if my cholesterol changed,58700:42:24,510 --> 00:42:25,810but I got this,58800:42:25,820 --> 00:42:31,220I won this game or I finished this challenge and that felt good.58900:42:31,900 --> 00:42:35,360Um there are also since Covid in particular,59000:42:35,360 --> 00:42:39,420a lot of virtual challenges that you can do with people around the world.59100:42:39,430 --> 00:42:52,200So there are challenges where you can sign up to walk through a particular area of the world and people around the world are doing it with you and then you get a medal afterward and again.59200:42:52,200 --> 00:42:54,390That that makes it feel concrete.59300:42:54,390 --> 00:42:55,490I've achieved this.59400:42:55,490 --> 00:42:56,520This was fun.59500:42:56,900 --> 00:42:57,770Um,59600:42:57,780 --> 00:43:00,980one example of that are the conqueror challenges,59700:43:00,980 --> 00:43:12,490but there are a lot of versions of this and you can google what really works for you and what you think might help you get that really concrete goal,59800:43:12,500 --> 00:43:13,810that motivation.59900:43:15,500 --> 00:43:21,210So this wraps up our second and final episode of question and answer.60000:43:21,220 --> 00:43:26,540We're going to go back to some themes of episodes next and then in the future,60100:43:26,540 --> 00:43:31,870we're going to return to more questions and answers from listeners around the world.60200:43:31,870 --> 00:43:32,510Like you.60300:43:33,000 --> 00:43:34,950If you do have questions,60400:43:34,950 --> 00:43:44,570you can email them to adultandgeriatricautism@gmail.com and I will collect those for episodes in the future.60500:43:44,580 --> 00:43:48,020Thanks for tuning in and I hope you join me next time.
 
 

Q and A Episode: Autism and the Physical Body

Join Dr. Regan for an episode in which she answers listener questions related to autism and the physical body. Topics include genetics, brain pathways and neurology, nature versus nurture, medications, and nutrition/diet. 
 
Genetics and Autism article
Neurogenetics: Smith-Magenis Syndrome
Autism and Medication review
 
Dr. Regan's Resources
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
 
Read the Transcript:
00:00:11,040 --> 00:00:14,410Hello and thanks for joining me.300:00:14,420 --> 00:00:18,220This is Dr Theresa Regan welcoming you to the podcast,400:00:18,230 --> 00:00:19,960autism in the adult.500:00:19,970 --> 00:00:22,170I am a neuropsychologist,600:00:22,180 --> 00:00:24,880a certified autism specialist.700:00:24,890 --> 00:00:30,150The director of an autism diagnostic clinic for adolescents,800:00:30,340 --> 00:00:32,100adults and aging.900:00:32,100 --> 00:00:36,760Adults in Illinois and the parent of a teen on the spectrum.1000:00:39,040 --> 00:00:47,950Last episode I invited listeners to write in questions they would like me to field in a question and answer podcast.1100:00:48,640 --> 00:01:01,940So what I've done is that I have gone through and tried to group some of the questions into related categories and I won't get to all of the questions in this episode.1200:01:01,940 --> 00:01:09,560But I am going to focus on several questions today that have to do with autism and the physical body.1300:01:10,240 --> 00:01:14,150So we're going to review things like genetics,1400:01:14,460 --> 00:01:18,850neuro anatomy and the physical brain in autism.1500:01:19,240 --> 00:01:26,060We're also going to talk about things like nutrition and diet and other physical aspects,1600:01:26,440 --> 00:01:30,160things that may impact the individual on the spectrum.1700:01:30,540 --> 00:01:33,450Let's take the topic of genetics First.1800:01:35,840 --> 00:01:57,660A recent article about the genetics of autism found that at least 80 percent of the likelihood that someone will have autism neurology is driven by the genetic code and it's the code that impacts the development of the neurology within that individual.1900:01:58,040 --> 00:01:58,390So,2000:01:58,390 --> 00:02:04,960the neurology includes of course the brain and its nuclei and its pathways,2100:02:05,440 --> 00:02:07,850genetics includes code,2200:02:07,860 --> 00:02:11,650parts that are inherited that is,2300:02:11,650 --> 00:02:20,340there are some families with autism characteristics across multiple family members.2400:02:20,430 --> 00:02:24,460Some members may not have any characteristics,2500:02:24,520 --> 00:02:28,960some may have a clustering of autistic characteristics,2600:02:28,970 --> 00:02:31,420but not a formal diagnosis.2700:02:31,420 --> 00:02:37,650They don't meet full threshold for the diagnosis and others will meet full threshold.2800:02:38,140 --> 00:02:42,230So for some people who are diagnosed with autism,2900:02:42,230 --> 00:02:44,760they can see characteristics,3000:02:44,760 --> 00:02:49,450qualities of this neurology and various family members,3100:02:49,840 --> 00:02:57,230genetics also includes possible alterations in the code during development.3200:02:57,230 --> 00:03:02,210So it can also mean that the genetics were not inherited,3300:03:02,220 --> 00:03:10,950but that there were some unexpected alterations of the code as the brain and the nervous system were developing.3400:03:11,540 --> 00:03:22,250That brings forth this autistic neurology and it is not as simple as saying that someone has the gene and someone does not.3500:03:22,260 --> 00:03:34,660This is a hugely complex Condition that is a reflection of at least 200 likely many more genetic contributions.3600:03:35,140 --> 00:03:46,850So that can be part of why we see autism on a spectrum that a certain clustering of genetics may produce certain characteristics,3700:03:46,850 --> 00:03:49,800while another clustering may produce others,3800:03:49,800 --> 00:03:51,010we just don't know,3900:03:51,020 --> 00:03:54,410we're not at the point where we have all of that nailed down,4000:03:54,410 --> 00:04:06,960but what we do know is that genetics plays a role in the development of the nervous system and specifically in the development of the neurology associated with autism.4100:04:10,240 --> 00:04:10,670Also,4200:04:10,670 --> 00:04:18,460autism may co occur with other physical conditions that are related to genetics.4300:04:19,140 --> 00:04:21,750They're related to development.4400:04:22,140 --> 00:04:22,680Um,4500:04:22,690 --> 00:04:24,980as guided by the genetic code.4600:04:24,990 --> 00:04:25,670So,4700:04:25,670 --> 00:04:26,550for example,4800:04:26,550 --> 00:04:33,740some individuals have a difference in the way their heart was formed or the kidneys or their palate,4900:04:33,740 --> 00:04:35,250like a cleft palate.5000:04:36,240 --> 00:04:41,850Also in some Children who have childhood cancers,5100:04:41,850 --> 00:04:45,950there's some association with a genetic difference,5200:04:45,950 --> 00:04:52,560that something in the code has been different and is related to the triggering of this cancer.5300:04:56,340 --> 00:05:02,280What that can mean is that for people with a heart difference,5400:05:02,280 --> 00:05:03,200for example,5500:05:03,200 --> 00:05:04,610that is congenital,5600:05:04,610 --> 00:05:07,990this is something that happened during development.5700:05:08,000 --> 00:05:10,150It has been there since birth.5800:05:10,740 --> 00:05:31,460There can be an increased presence of also a typical neurology that these things that have developed around the same time or secondary to similar parts of the genetic code can co occur.5900:05:32,140 --> 00:05:32,700So,6000:05:32,710 --> 00:05:33,760research shows,6100:05:33,760 --> 00:05:34,650for example,6200:05:34,650 --> 00:05:42,620that about 30% of individuals with some developmental heart conditions are also on the autism spectrum,6300:05:42,630 --> 00:05:47,960because various organ systems can be impacted by the code during development.6400:05:51,040 --> 00:06:00,250The other 20% of the variants that was not assigned to genetics in the research study.6500:06:00,840 --> 00:06:00,990So,6600:06:00,990 --> 00:06:04,910if we're saying 80% is driven by genetics,6700:06:04,910 --> 00:06:11,090the other 20% my understanding is that it includes all of the measurement error.6800:06:11,100 --> 00:06:13,650So that is kind of um,6900:06:13,650 --> 00:06:15,760statistical artifact.7000:06:15,770 --> 00:06:28,290It's just variants that doesn't actually um relate to a causative factor and it can also include things in the environment,7100:06:28,300 --> 00:06:31,920which can include physical things as well.7200:06:31,930 --> 00:06:32,760So,7300:06:33,240 --> 00:06:36,890there have been theories that perhaps for some people,7400:06:36,900 --> 00:06:37,250um,7500:06:37,260 --> 00:06:42,830a virus might interact with the genetics or for some people,7600:06:42,840 --> 00:06:43,220um,7700:06:43,220 --> 00:06:52,810some type of substance in the environment may trigger uh differences in the way that the neurology has developed.7800:06:52,970 --> 00:07:00,260So The 20% is not well defined in in very specific ways.7900:07:00,270 --> 00:07:18,050But the statistics do help us understand the prominence of a genetic factor here and that's one of the reasons that a correct diagnosis of autism can be so important because we see what the foundation of a behavioral pattern might be.8000:07:18,440 --> 00:07:31,310And at its very base we're trying to distinguish and to figure out whether a behavioral pattern is neurologic or whether it falls into what we more traditionally call a mental health diagnosis.8100:07:31,310 --> 00:07:33,260And I know that there,8200:07:33,640 --> 00:07:33,980you know,8300:07:33,980 --> 00:07:40,010as imprecision and how we might separate neurology from mental health.8400:07:40,010 --> 00:07:46,210But let's consider an example of mental health as PTSD,8500:07:46,210 --> 00:08:03,600that we could put that we could put depression into a more traditional mental health category in order to demonstrate why it makes a difference to know if a behavioral pattern is neurologic versus traditionally mental health,8600:08:03,610 --> 00:08:05,760let's consider a different example,8700:08:06,140 --> 00:08:12,850let's say that two separate clients go to a psychology appointment for the same concern.8800:08:12,860 --> 00:08:15,050They both have memory concerns.8900:08:15,840 --> 00:08:27,800Let's suppose that one client has an evaluation of memory and the psychologist concludes that the profile is very classic for an alzheimer's dementia,9000:08:27,810 --> 00:08:32,860a very clear neurologic factor that's impacting memory.9100:08:34,440 --> 00:08:47,360The second client who has the same concern undergoes an evaluation and this person is found to have memory loss due to disassociative episodes secondary to trauma.9200:08:47,740 --> 00:09:01,960So this is a person who has experienced such significant life trauma that their brain kind of goes offline for periods of time in order to protect the person from re experiencing the trauma.9300:09:02,540 --> 00:09:06,620But this is not a physically based memory issue.9400:09:06,620 --> 00:09:09,950This is based in the psychology of trauma.9500:09:10,940 --> 00:09:15,830So even though they're presenting for the same experience and concern,9600:09:15,840 --> 00:09:21,350one is clearly in the neurologic domain and one is clearly in the mental health domain.9700:09:21,940 --> 00:09:24,460Now the implications of that are really important.9800:09:24,940 --> 00:09:42,090So one is that doing talk therapy with a patient with Alzheimer's or telling them that remembering things is very important and they should do so talking through past histories of relationships or trauma or doing E.9900:09:42,090 --> 00:09:42,260M.10000:09:42,260 --> 00:09:42,440D.10100:09:42,440 --> 00:09:42,720R.10200:09:42,720 --> 00:09:43,750For trauma,10300:09:43,760 --> 00:09:46,260reminding them that it's safe to remember.10400:09:47,340 --> 00:10:03,430These aren't going to be effective as far as improving that person's memory but these approaches as part of psychotherapy for the a person who does have disassociative episodes secondary to trauma,10500:10:03,430 --> 00:10:06,490these might really be effective.10600:10:06,500 --> 00:10:23,550So it helps us understand what's likely to be effective and choose um something that's likely to be helpful rather than something that's really not going to change the symptoms because we're not going to change that neurologic base.10700:10:24,540 --> 00:10:24,820Now,10800:10:24,820 --> 00:10:40,340one individual asked me to highlight in a bit more detail what parts of the brain are involved in autism and first I'll state that there's really nobody that can outline everything about the neurology of autism at this point.10900:10:40,370 --> 00:10:43,960There are just so many things to understand from genetics,11000:10:44,340 --> 00:10:45,580cellular mechanics,11100:10:45,580 --> 00:10:46,560biochemistry,11200:10:46,560 --> 00:10:48,260physiological issues.11300:10:48,270 --> 00:10:51,360There's lots of nuclei and pathways in the brain.11400:10:52,640 --> 00:10:54,590And even in the area of genetics.11500:10:54,590 --> 00:10:55,210As I said,11600:10:55,210 --> 00:11:00,430there are hundreds of possible genes involved and the genetics in one individual,11700:11:00,430 --> 00:11:02,960the neurology of one individual.11800:11:02,960 --> 00:11:09,910The biochemistry of one individual is likely to be somewhat different than that and another individual.11900:11:09,920 --> 00:11:10,610However,12000:11:10,610 --> 00:11:12,160in broad strokes,12100:11:12,640 --> 00:11:19,150a lot of the characteristics have to do with the nuclei and the pathways in the center of the brain.12200:11:19,740 --> 00:11:23,960And this area is called the sub cortical area of the brain,12300:11:24,440 --> 00:11:29,060sub meaning under and cortex meaning the outer layer.12400:11:29,940 --> 00:11:32,160In addition to the center of the brain,12500:11:32,540 --> 00:11:45,050the frontal lobes are also densely connected to the sub cortical pathways and these areas are also uh involved with things that are seen on the autism spectrum.12600:11:46,240 --> 00:11:48,570Now this is extremely simplistic,12700:11:48,580 --> 00:11:58,560but it is a place to start in understanding that the sub cortical nuclei in pathways uh and the dense connections to the front of the brain.12800:11:59,840 --> 00:12:05,750The functions that are impacted by these areas include things like executive function,12900:12:06,140 --> 00:12:15,730which everyone on the spectrum will have some difficulty with the ability to start, maintain, and complete behaviors.13000:12:15,810 --> 00:12:19,660Whether that's talking tours tasks,13100:12:20,040 --> 00:12:25,300the ability to switch gears to handle interruptions to deal with,13200:12:25,300 --> 00:12:26,060change,13300:12:26,540 --> 00:12:43,430the ability to show flexibility to think abstractly as opposed to categorically or literally the whole issue of repetition is very key in this part of the brain repetition of speech movements,13400:12:43,440 --> 00:12:45,750rituals behavior patterns.13500:12:45,930 --> 00:12:50,750These sub cortical areas are really involved in that kind of repetition,13600:12:51,640 --> 00:12:54,300motor coordination sequencing.13700:12:54,310 --> 00:13:03,340There's a lot that goes on in the support sub cortical nuclei with that attention to detail versus seeing the big picture,13800:13:03,350 --> 00:13:05,780knowing what is most and least important,13900:13:05,790 --> 00:13:06,400etcetera.14000:13:06,400 --> 00:13:19,660So there are a lot of the behavioral features seen in the autism neurology that are features having to do with those pathways and those nuclei.14100:13:20,940 --> 00:13:21,300Now,14200:13:21,300 --> 00:13:27,470other characteristics of the autism spectrum likely have to do with inter plays between the cortex,14300:13:27,470 --> 00:13:31,070the outside of the brain and the sub cortical areas,14400:13:31,070 --> 00:13:34,550the inside things like social communication,14500:13:34,550 --> 00:13:35,470relationships,14600:13:35,470 --> 00:13:36,860sensory processing.14700:13:37,440 --> 00:13:43,930So really when we're talking about the neurology of autism in broad strokes,14800:13:43,940 --> 00:13:55,450it has a lot to do with the dense connections in the middle of the brain and the front of the brain as well as interplay between more complex areas of the cortex.14900:13:56,440 --> 00:14:01,680Now that genetics and neurology are being understood at a much deeper level.15000:14:01,700 --> 00:14:18,730There is a field called behavioral genetics and it's really interesting and I was able to take genetics in my undergrad and then I took behavioral genetics through an online course at University of Minnesota.15100:14:18,730 --> 00:14:20,760That was also very interesting.15200:14:21,840 --> 00:14:32,660This was a free online course and really gave me a nice flavor of the types of research that is evolving in this area.15300:14:34,040 --> 00:14:52,460I've also gotten to read multiple articles and I've seen patients with various genetic differences and one thing that we're seeing is that patients who had a genetic profile done 10 years ago and they didn't find anything different or unexpected.15400:14:52,740 --> 00:14:52,990You know,15500:14:52,990 --> 00:15:01,160those same patients are going back to have the genetic code redone and they're seeing these,15600:15:01,540 --> 00:15:02,130um,15700:15:02,140 --> 00:15:03,140uh,15800:15:03,150 --> 00:15:07,060these smaller kinds of micro deletions,15900:15:07,540 --> 00:15:09,100micro additions,16000:15:09,110 --> 00:15:13,740so much at a much smaller scale and more detailed scale.16100:15:13,750 --> 00:15:17,170We're able to see some differences in the genetic code.16200:15:17,180 --> 00:15:17,620Now,16300:15:17,620 --> 00:15:19,290the genotype,16400:15:19,300 --> 00:15:27,530if you hear that term is the code itself in the phenotype is the expression of the code.16500:15:27,540 --> 00:15:28,210Uh,16600:15:28,220 --> 00:15:33,860so the phenotype could be eye color or height or hair color.16700:15:34,440 --> 00:15:39,750And sometimes we talk about phenotype as relates to autism.16800:15:40,140 --> 00:15:41,300So,16900:15:41,350 --> 00:15:49,860there are behavioral phenotypes of various genetic conditions or states or combinations of code.17000:15:50,740 --> 00:15:51,250So,17100:15:51,260 --> 00:16:10,890the that's basically a complex way of saying that this code does impact this expression of behavior in an individual sometimes for someone who does not meet full criteria for autism,17200:16:10,900 --> 00:16:13,120but they have characteristics.17300:16:13,130 --> 00:16:18,150Someone might refer to that as the broader autistic phenotype.17400:16:18,640 --> 00:16:26,210That just means that there are these expressions there of neurology that are important to understand,17500:16:26,210 --> 00:16:30,830but the person doesn't meet full criteria for a diagnosis.17600:16:30,830 --> 00:16:33,850So that's the broader autistic phenotype.17700:16:35,140 --> 00:16:54,370one of the interesting lines of research is starting to connect repetitive stereotyped behaviors with genetic codes and repetitive stereotyped behaviors is one of the criteria that may be met within autism,17800:16:54,370 --> 00:16:55,960although it's not required,17900:16:56,440 --> 00:16:59,050but it is a common um,18000:16:59,060 --> 00:17:00,530neurologic expression,18100:17:00,530 --> 00:17:02,000a com common phenotype.18200:17:02,000 --> 00:17:17,170Ipic expression of the neurology and some people are concerned about the word stereotyped because they feel that it might be a disparaging comment about the autistic individual.18300:17:18,040 --> 00:17:19,350Um actually,18400:17:19,360 --> 00:17:30,140stereotyped behaviors are seen all across neurologic states and conditions and they're seen in some conditions,18500:17:30,140 --> 00:17:31,160but not others.18600:17:31,540 --> 00:17:37,450So someone with a traumatic brain injury or a stroke is not likely to show stereotyped behaviors,18700:17:37,840 --> 00:17:46,560but individuals with dementia can start to show these individuals with different genetic or developmental conditions.18800:17:46,570 --> 00:17:58,080I've seen these um expressions of neurology and people who have had infectious disease or autoimmune kinds of responses to an infection.18900:17:58,090 --> 00:18:03,060And so it is just a standard neurologic term.19000:18:03,440 --> 00:18:06,150A stereotyped behavior um,19100:18:06,160 --> 00:18:09,670is expressed in a similar way every time,19200:18:10,040 --> 00:18:18,010even though the environment or the context of the behavior changes.19300:18:18,020 --> 00:18:22,520And so the behavior is not specific to the context,19400:18:22,530 --> 00:18:24,860It's not required by the context.19500:18:25,240 --> 00:18:27,870It may be soothing to the individual.19600:18:27,880 --> 00:18:30,670It may be something the person doesn't even notice,19700:18:31,040 --> 00:18:33,420but it is the same each time.19800:18:33,420 --> 00:18:35,860It's the stereotyped replica.19900:18:36,340 --> 00:18:47,550We could call it a repetitive, replica behavior and you might see that within autism in regards to movement what people say.20000:18:47,560 --> 00:18:47,840So,20100:18:47,840 --> 00:18:53,350verbalization is whether that's echoing or repeating words or phrases.20200:18:53,360 --> 00:18:56,940And you can also see stereotyped use of objects.20300:18:56,950 --> 00:19:11,450That's where you'll uh kind of see when a youngster might line up their toys or an adult may keep a coin in their pocket that they flip back and forth between two of their fingers.20400:19:11,940 --> 00:19:14,860This kind of stereotyped repetition.20500:19:14,860 --> 00:19:18,530This replica um of the behavior,20600:19:18,540 --> 00:19:21,190it may be soothing to the person,20700:19:21,200 --> 00:19:23,260or again they may not notice it.20800:19:23,270 --> 00:19:31,680I've had patients recently who have tongue movements or tongue kind of um curling behaviors that they don't even notice.20900:19:31,680 --> 00:19:33,840And so it could occur either way,21000:19:33,850 --> 00:19:35,770but it's neurologically driven.21100:19:36,040 --> 00:19:38,260If you ask the person to stop it,21200:19:38,260 --> 00:19:45,410they can stop it in the moment but it will just recur and that is common in neurology.21300:19:45,410 --> 00:19:49,250So if we think about um you know,21400:19:49,250 --> 00:19:51,450if I ask you to stop breathing,21500:19:51,840 --> 00:19:54,840you can stop breathing but it's going to then kick in,21600:19:54,840 --> 00:20:00,950it's going to recur ... an example in neurology is in Parkinson's disease.21700:20:01,640 --> 00:20:05,940Part of what you see is changes in the step pattern,21800:20:06,000 --> 00:20:08,450the gait pattern of walking.21900:20:08,940 --> 00:20:14,170And you'll start to see neurologically very small shuffling steps.22000:20:14,210 --> 00:20:24,450That's really classic for a Parkinsonian gait and if you tell the person to lift their feet they can do that.22100:20:24,840 --> 00:20:30,270Um And you know that's what a physical therapist will say now remember to lift your feet.22200:20:30,640 --> 00:20:33,830Um But when the therapist isn't there,22300:20:33,840 --> 00:20:37,100they just and they don't have that verbal cue,22400:20:37,110 --> 00:20:39,460their brain goes back to their default,22500:20:39,840 --> 00:20:44,910which is this um just shuffling gait pattern that's neurologic.22600:20:44,910 --> 00:20:47,760So like other neurologic things.22700:20:48,440 --> 00:20:52,200These are behaviors that repeat.22800:20:52,210 --> 00:20:55,670Um but can be suppressed in the moment.22900:20:57,140 --> 00:21:11,300One of the super interesting things that amazes even me is that genetic studies are starting to link stereotyped behaviors to certain genetic differences.23000:21:11,840 --> 00:21:20,410And this is not a 1-1 correlation where someone with this genetic difference always does this stereotyped behavior.23100:21:20,420 --> 00:21:30,760But sometimes it really is astonishing how connected the code in this particular chromosome is to a behavioral pattern.23200:21:32,040 --> 00:21:39,090I'm going to link in the show notes um a website from the U.23300:21:39,090 --> 00:21:39,590K.23400:21:39,590 --> 00:21:47,430That talks about neuro genetic conditions and they're talking about smith magnus syndrome,23500:21:47,440 --> 00:21:53,170which is a genetic difference that causes the neurology to develop differently.23600:21:53,540 --> 00:22:06,270And one of the things that's interesting about this condition is that there are a few stereotyped behaviors that could easily go unnoticed at first at least.23700:22:06,740 --> 00:22:13,180But that um really are very common in people with this genetic pattern.23800:22:13,470 --> 00:22:15,950And one of these is self hugging.23900:22:16,340 --> 00:22:30,460So the individual will hug themselves many times in response to being happy about something in the same way that someone could have hand flapping in response to being excited or happy.24000:22:31,140 --> 00:22:36,560And at first the self hugging is just delightful in these kids.24100:22:36,940 --> 00:22:37,590But you know,24200:22:37,590 --> 00:22:44,080as they grow older and as this behavior is repeated without specific context,24300:22:44,080 --> 00:22:47,610like it starts to look really unusual.24400:22:47,680 --> 00:22:54,950And indeed it is a repetitive stereotyped behavior that is related to the genetic code.24500:22:56,340 --> 00:23:03,710The other stereotype that's very common within this genetic pattern is called lick and flip.24600:23:03,720 --> 00:23:14,960And this happens when the individual licks their hand or their fingers and then uses it to rapidly turn pages in a book,24700:23:15,540 --> 00:23:17,550lick and flip stereotype.24800:23:18,040 --> 00:23:18,800And again,24900:23:18,800 --> 00:23:22,930it looks delightful in a little kid and they'll say,25000:23:22,940 --> 00:23:25,510oh this person loves reading,25100:23:26,440 --> 00:23:28,680but actually they're not reading.25200:23:28,700 --> 00:23:31,880And turning the pages isn't functional,25300:23:31,890 --> 00:23:35,710but it's a repetitive stereotyped behavior,25400:23:35,720 --> 00:23:39,360it's neurologic and it's related to the genetic code.25500:23:41,340 --> 00:23:46,670So what do I want you to walk away from this information with?25600:23:47,140 --> 00:23:52,590I don't want you to worry about the terminology,25700:23:52,600 --> 00:23:53,960the statistics.25800:23:54,640 --> 00:24:16,860What I would like you to take away is this understanding that there is a physical base for our neurology and that is what is the base of the autistic behavioral pattern and that this physical base is related to the genetic code in some way.25900:24:18,540 --> 00:24:22,850This does not mean that everyone is an automaton.26000:24:23,540 --> 00:24:36,680Um but I think the value of thinking about the physical aspects of behavior is that it balances out our understanding of a very complex interplay between nature,26100:24:36,690 --> 00:24:39,750the physical form of the brain and nurture,26200:24:39,750 --> 00:24:42,170which is our experience in the world,26300:24:42,940 --> 00:24:48,360and the truth lies in the complexity of the interplay of both.26400:24:48,840 --> 00:24:56,700But what we tend to do as humans is think in these categorical ways and in our culture,26500:24:56,710 --> 00:25:00,450we lean very heavily on the nurture point of view,26600:25:00,450 --> 00:25:03,720at least in this time,26700:25:03,730 --> 00:25:05,150this generation,26800:25:05,160 --> 00:25:07,290where um you know,26900:25:07,290 --> 00:25:21,930it really strikes home to me sometimes when um I was recently traveling and I got to walk through high school and there's all these posters up and you know what I'm talking about,27000:25:21,930 --> 00:25:26,360they say things like the sky is the limit, reach for the stars.27100:25:26,840 --> 00:25:30,770The only limit you have is how you limit yourself.27200:25:31,940 --> 00:25:33,700And if you can dream it,27300:25:33,700 --> 00:25:34,850you can achieve it.27400:25:35,840 --> 00:25:39,820So we love that individualistic,27500:25:39,830 --> 00:25:42,460empowered framework.27600:25:43,940 --> 00:25:51,460It appeals to this um part of ourselves that does want to be able to make our way,27700:25:52,040 --> 00:25:54,310I don't want to have limitation,27800:25:54,320 --> 00:25:59,770I really want to be able to achieve anything if I apply myself hard enough.27900:26:02,140 --> 00:26:03,060However,28000:26:03,540 --> 00:26:05,920it's actually not one or the other,28100:26:05,930 --> 00:26:12,270it's not all effort and it's not all fatalistic that everything is determined,28200:26:12,940 --> 00:26:14,770it's not that simplistic,28300:26:15,640 --> 00:26:15,960you know,28400:26:15,960 --> 00:26:20,860it's not as simplistic as thinking that all we need to do is try hard enough,28500:26:21,440 --> 00:26:29,270nor is it as simplistic as thinking that there's nothing we can do because our neurology dictates everything.28600:26:30,140 --> 00:26:35,190It's very hard to hold the complexity of the truth in our minds and as humans,28700:26:35,190 --> 00:26:43,460we love to be able to take aside or categorize opinions and even when we try to stay centered in the complexity,28800:26:43,460 --> 00:26:48,770we often slide from one side to the other no matter what the topic,28900:26:49,540 --> 00:26:58,660but to be able to hold complexity in our minds about something most often is what we need in order to be in the most truth.29000:26:59,740 --> 00:27:05,590We should feel empowered to work hard because we can influence the outcome of our lives,29100:27:05,600 --> 00:27:12,260but we should also feel grounded in the fact that there are going to be things that we just can't change.29200:27:12,840 --> 00:27:17,840And someone pointing out that we have limitations.29300:27:17,850 --> 00:27:19,950That's not a criticism.29400:27:20,640 --> 00:27:21,560You know,29500:27:21,570 --> 00:27:30,860we all have set limitations as a function of being human and my limitations are not the same as yours and vice versa,29600:27:31,740 --> 00:27:36,060But we can't be 10 ft tall if we try hard enough.29700:27:37,040 --> 00:27:41,100And the person who is blind cannot see if they try hard enough.29800:27:41,110 --> 00:27:51,550And the person who wants to live to be 400 isn't going to be able to achieve that with just good attitude and high effort or commitment.29900:27:54,240 --> 00:27:59,390So this brings me to another topic mentioned in the Q and A emails,30000:27:59,390 --> 00:28:02,960which is the topic of whether autism is all good.30100:28:03,640 --> 00:28:14,530That is ... is autism a wonderful reflection of diversity that should always be celebrated or is autism all bad?30200:28:14,540 --> 00:28:23,550The diagnosis is stigmatizing and limiting and it's something to hide or be ashamed of and it represents something that must be fixed.30300:28:25,240 --> 00:28:31,310I think it's really easy to find people on each side of this topic.30400:28:31,320 --> 00:28:31,990But again,30500:28:31,990 --> 00:28:40,550the truth is in the complexity and I want to invite you to dive back into complexity and be able to live there.30600:28:42,240 --> 00:28:57,970Every individual whether they're on the spectrum or not has great deep inherent value as a person being on the spectrum or you're neurotypical does not change any of that.30700:28:58,030 --> 00:28:59,860Every person,30800:29:00,440 --> 00:29:06,350whether on the spectrum or not has gifts and strengths and can bless people around them.30900:29:06,740 --> 00:29:08,160Every individual,31000:29:08,170 --> 00:29:11,360whether on the spectrum or not has limitations,31100:29:11,840 --> 00:29:35,860challenges and struggles and we need to allow there to be gift and challenge in every autistic individual rather than needing it to be all good or trying to convince people that it's all bad.31200:29:37,040 --> 00:29:40,150One of the blessings of knowing that there's autism,31300:29:40,150 --> 00:29:59,360neurology is just understanding the context for this person's strengths and challenges and being able to tap into our understanding of that and also a direction that might be most helpful when things are a challenge.31400:30:00,140 --> 00:30:11,560I'm going to switch gears just a moment to a few other physical questions I received about the spectrum and then we're going to close up and we'll talk about next episode.31500:30:13,140 --> 00:30:17,270So one of the questions I was asked is about medication.31600:30:18,040 --> 00:30:27,170Um and I'll just give a general general kind of summary of medication in autism.31700:30:28,940 --> 00:30:35,960One of the things to know is that there are often four categories if someone is taking a medication.31800:30:36,540 --> 00:30:40,890Um it's often within these four categories Of difficulty.31900:30:40,890 --> 00:30:42,760So one would be attention.32000:30:43,640 --> 00:30:50,360Another category of difficulty that someone may take a medication or supplement for is sleep,32100:30:50,940 --> 00:30:56,960that sleep onset is often very difficult or just getting enough sleep.32200:30:59,040 --> 00:31:02,570Another category is anxiety,32300:31:02,580 --> 00:31:09,450which is often very prevalent on the spectrum and also depression that goes along with.32400:31:09,460 --> 00:31:09,790Um,32500:31:09,790 --> 00:31:15,610some of life experiences and the fourth category has to do with agitation,32600:31:15,610 --> 00:31:18,060irritability or explosiveness.32700:31:19,440 --> 00:31:23,460Not everyone on the spectrum benefits from medication,32800:31:23,840 --> 00:31:26,730but it often can be for some people,32900:31:26,740 --> 00:31:31,640a nice layer of support in one or more of these areas.33000:31:31,650 --> 00:31:32,670However,33100:31:33,440 --> 00:31:45,720medication on the spectrum does not uh show itself as effective um for these challenges as for people who are,33200:31:45,720 --> 00:31:57,460you're a typical and taking the medication and the reason for that is that it doesn't change the neurologic connectivity that has developed in the nervous system,33300:31:58,340 --> 00:32:03,860but it can offer a layer of support that the person didn't have before.33400:32:04,640 --> 00:32:15,400But let's say someone has anxiety related to the autism neurology and another person has anxiety related to something else.33500:32:15,410 --> 00:32:21,770They don't have autism neurology medications likely to work better for that second person.33600:32:23,540 --> 00:32:26,990The reason that's important to know is just that sometimes people are,33700:32:27,000 --> 00:32:43,460are determined to go on a quest to find um this really effective combination of medications that will make things a lot easier and that's not the typical outcome that you'll have.33800:32:44,240 --> 00:32:44,660Now,33900:32:44,660 --> 00:32:54,260the medications that are used for autism a lot of times that's not going to change just because you have a diagnosis and the reason for that is that,34000:32:54,740 --> 00:32:55,390um,34100:32:55,400 --> 00:32:55,830you know,34200:32:55,830 --> 00:32:57,410it's symptom based,34300:32:57,430 --> 00:33:02,660so the medications would be prescribed based on your symptoms,34400:33:02,660 --> 00:33:04,730not based on your diagnosis,34500:33:04,780 --> 00:33:08,410but the expected outcome is different if,34600:33:08,410 --> 00:33:08,810you know,34700:33:08,810 --> 00:33:17,950that you have autistic neurology and there are sometimes um side effects that can be more common on the spectrum.34800:33:18,540 --> 00:33:21,360So if you're taking attention medication,34900:33:21,370 --> 00:33:32,260you may have increased anxiety or some repetitive movements or ticks at a higher rate than someone else.35000:33:35,540 --> 00:33:44,260Another question was about whether marijuana improved social function or other aspects of functioning for the autistic individual.35100:33:45,440 --> 00:33:46,130Um,35200:33:46,140 --> 00:34:02,550my experience and my understanding from the literature and what I've seen with patients and clients is that whether someone's taking CBD oil or smoking marijuana,35300:34:02,940 --> 00:34:03,160um,35400:34:03,160 --> 00:34:07,130I just find people responding differently.35500:34:07,140 --> 00:34:17,130So I have clients that tell me it's extremely helpful and I have clients that tell me it's actually very upsetting and they don't care for it at all.35600:34:17,140 --> 00:34:21,960And I have clients feel like it really just doesn't doesn't do anything for them.35700:34:22,340 --> 00:34:47,610So that ends up being kind of an individualized thing that you would discuss with your medical team and your physicians there are studies looking at compounds um from other substances just to see if they can be used um to help even out the anxiety or to help with social interaction.35800:34:47,620 --> 00:34:51,280Those are really just in a very experimental stages,35900:34:51,280 --> 00:34:52,980sometimes not even with humans.36000:34:52,980 --> 00:34:55,760And so I don't know what the outcome will be,36100:34:55,770 --> 00:34:58,060but everyone's hoping that over time,36200:34:58,060 --> 00:35:00,160as we understand the neurology better,36300:35:00,440 --> 00:35:14,470uh we can have some more things to help people who are struggling with some of those characteristics or seasons of life in the final physical question that I was asked has to do with autism and diet.36400:35:15,340 --> 00:35:16,750And um,36500:35:16,760 --> 00:35:19,670there is a particular diet out there.36600:35:19,670 --> 00:35:24,250The gluten free and casein free... casein is a milk protein.36700:35:24,840 --> 00:35:25,240Um,36800:35:25,250 --> 00:35:26,700if you've heard of lactose,36900:35:26,700 --> 00:35:28,470that's actually a milk sugar.37000:35:29,140 --> 00:35:34,660But typically people find that gluten which is also a protein and casein,37100:35:35,040 --> 00:35:41,670These are the things that some people will target in their diet by removing them.37200:35:42,540 --> 00:35:43,120Um,37300:35:43,130 --> 00:35:48,460and there's not a lot of research support for that.37400:35:49,440 --> 00:35:50,360However,37500:35:50,840 --> 00:35:53,520I will say that in our home,37600:35:53,530 --> 00:35:58,360my son had really extreme difficulties with sleep and colic,37700:35:58,840 --> 00:35:59,260um,37800:35:59,260 --> 00:36:02,650which is just a lot of crying and discomfort.37900:36:03,430 --> 00:36:05,430I was very overwhelmed.38000:36:05,430 --> 00:36:07,990I had tried lots of things.38100:36:08,080 --> 00:36:10,340Somebody said I should try this diet.38200:36:10,350 --> 00:36:17,050I was overwhelmed with the prospect of having to learn a whole new diet and eliminate a bunch of things.38300:36:17,430 --> 00:36:18,050Um,38400:36:18,430 --> 00:36:19,350at 18 months,38500:36:19,350 --> 00:36:23,480I just felt like I had no other choice.38600:36:23,480 --> 00:36:24,250I really,38700:36:24,730 --> 00:36:25,350uh,38800:36:26,030 --> 00:36:28,930I had nothing left to try and I said,38900:36:28,930 --> 00:36:37,660I'm just going to try this for one month and then I'm not even going to think beyond that because the thought of doing it forever.39000:36:37,660 --> 00:36:39,920Just felt overwhelming.39100:36:39,920 --> 00:36:40,690So,39200:36:40,700 --> 00:36:41,120um,39300:36:41,130 --> 00:36:43,420I did do that.39400:36:43,430 --> 00:36:47,460And within 2.5 weeks he was,39500:36:47,930 --> 00:36:48,370um,39600:36:48,380 --> 00:36:50,490well ever since infancy,39700:36:50,490 --> 00:36:54,010he took a 20 minute nap twice a day and that's it.39800:36:54,020 --> 00:36:57,050And he would wake up like five times a night.39900:36:57,530 --> 00:36:58,250Um,40000:36:58,630 --> 00:37:02,1902 1/2 weeks after the diet began,40100:37:02,200 --> 00:37:06,000he started taking an hour and a half nap,40200:37:06,010 --> 00:37:07,960sometimes up to three hours.40300:37:08,430 --> 00:37:09,660Uh and believe me,40400:37:09,660 --> 00:37:15,050we had tried everything before and did nothing different except the diet change.40500:37:16,630 --> 00:37:31,510Um He stayed gluten free and casein free um until really just recently in his high school years and now he seems to do okay with without that elimination.40600:37:31,660 --> 00:37:58,550So he is eating gluten and casein now having said that um it is something that you need to um do in conjunction with your medical team being aware so that your child and get enough nutrients and won't be missing out on calcium or other things that dairy might provide or gluten gluten products.40700:37:59,630 --> 00:38:00,620Also,40800:38:00,630 --> 00:38:07,030what really seems to be true is that many people do not respond to this at all.40900:38:07,040 --> 00:38:09,340They don't get any benefit from it.41000:38:09,820 --> 00:38:12,640And um I don't know why,41100:38:13,720 --> 00:38:17,050I just think it's a very individual kind of response.41200:38:17,060 --> 00:38:20,920So um you know,41300:38:20,920 --> 00:38:29,600if you feel and you've talked to your doctors and medical team that a trial isn't going to harm anyone's health,41400:38:29,610 --> 00:38:31,040you can try that.41500:38:31,420 --> 00:38:34,490Um On the other hand,41600:38:34,500 --> 00:38:39,630I have not seen adults try it to be honest.41700:38:39,640 --> 00:38:47,950I really don't know if adults who try it for the first time as an adult would feel benefit.41800:38:48,420 --> 00:38:52,340Um but that has been my experience with that particular diet.41900:38:52,720 --> 00:38:54,170Other kinds of diets.42000:38:54,170 --> 00:38:57,320You can find lots um Bill,42100:38:57,330 --> 00:39:01,270a lot of them are kind of focusing on being healthy.42200:39:01,270 --> 00:39:07,430So people will take out things like artificial colors or flavors.42300:39:07,440 --> 00:39:09,530There are other kinds of diets.42400:39:09,540 --> 00:39:18,800There's just too many to list off other approaches really talk about decreasing sugar.42500:39:18,810 --> 00:39:19,390Um,42600:39:19,390 --> 00:39:21,240getting good protein.42700:39:21,250 --> 00:39:21,650Um,42800:39:21,650 --> 00:39:25,450so that's a whole um,42900:39:25,820 --> 00:39:31,430a whole broad journey that you can take if you desire.43000:39:31,440 --> 00:39:37,610And I know some people who have really benefited from that and I know other people who have tried really,43100:39:37,610 --> 00:39:40,840really hard and just haven't found uh,43200:39:40,850 --> 00:39:43,750what might help help them feel a little bit better.43300:39:45,620 --> 00:39:55,940So I want to say thank you for the question and answer emails you sent to adult and geriatric autism at gmail dot com.43400:39:56,720 --> 00:40:05,900And thank you for giving me these ideas for a session here about autism and the physical body,43500:40:05,900 --> 00:40:07,250the physical condition.43600:40:08,020 --> 00:40:10,160Next episode,43700:40:10,160 --> 00:40:15,480I'll be formulating some other themes about emails I received.43800:40:15,490 --> 00:40:16,300For example,43900:40:16,300 --> 00:40:18,450I received some questions about parenting,44000:40:18,450 --> 00:40:22,120some questions about autism in the workplace and more.44100:40:22,130 --> 00:40:22,950I'll see you then.
 
 

Shifting Autistic Characteristics Across The Lifespan: The Impact of Aging

Join Dr. Regan for the final episode in this series about how autistic characteristics may shift across the lifespan. This episode focuses on the life season of aging, including year 50 and beyond. 
Recognizing Dysregulation on the Autism Spectrum
Gaining Momentum for Daily Activities
Email questions for Q and A podcast episode with Dr. Regan to adultandgeriatricautism@gmail.com
Executive function book series (choose the book with the age range you are interested in): Smart But Scattered
 
Dr. Regan's Resources
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
 
Read the transcript:
 
100:00:02,540 --> 00:00:05,010Hi everyone,200:00:05,020 --> 00:00:19,460this is dr Regan joining you again for our final episode here on autism in the adult in our series about shifts in the characteristics of autism across the lifespan.300:00:20,330 --> 00:00:21,530Many of you know,400:00:21,530 --> 00:00:24,160already that I am a neuropsychologist,500:00:24,540 --> 00:00:27,360I'm a certified autism specialist,600:00:27,840 --> 00:00:38,850an author podcast host here at autism in the adult and the founder and director of a diagnostic autism clinic for adolescents,700:00:38,850 --> 00:00:41,960adults and aging adults in central Illinois.800:00:42,840 --> 00:00:46,760We're going to get into this final episode of our series.900:00:46,920 --> 00:00:48,560But before we do that,1000:00:49,440 --> 00:00:53,850I want to talk to you about our next episode.1100:00:54,240 --> 00:00:59,760I do have some ideas for topics for more episodes and another series,1200:01:00,140 --> 00:01:06,040but I'm thinking that what I'd really like to do is to make space for an episode,1300:01:06,040 --> 00:01:18,220answering your questions or talking about um maybe a particular statement or question or term that you would like some feedback about.1400:01:18,230 --> 00:01:24,160So I'm either going to do that for the next episode or sometime soon.1500:01:24,440 --> 00:01:30,400If you do have a question you would like me to cover or something to comment on.1600:01:30,940 --> 00:01:42,060You can email that to me at my professional email which is adultandgeriatricautism@gmail.com.1700:01:42,740 --> 00:01:47,260adultandgeriatricautism@gmail.com.1800:01:48,340 --> 00:01:53,480And I cannot comment on any particular personal issue.1900:01:53,480 --> 00:01:56,080Like I can't give you personal advice.2000:01:56,090 --> 00:02:06,290But if you have a general question about what something looks like in autism or an approach people take for a certain situation,2100:02:06,300 --> 00:02:09,760you can certainly email those questions in.2200:02:10,340 --> 00:02:17,700I will try to get as many as I can and respond to those in an episode.2300:02:17,710 --> 00:02:20,930I may not get to all of the questions,2400:02:20,940 --> 00:02:24,860but I can save them for future episodes.2500:02:26,040 --> 00:02:30,480If there are questions that really should be a whole episode or series,2600:02:30,490 --> 00:02:32,850I'll go ahead and save those as well.2700:02:33,440 --> 00:02:41,660But I hope you will participate and will have kind of a question and answer session for those things that are on your mind.2800:02:43,640 --> 00:02:47,960So as we round out the final episode in our series,2900:02:49,140 --> 00:02:53,610those of you who have followed the other episodes,3000:02:53,620 --> 00:03:10,760you'll know that the way that I've structured my thoughts is that I'm going to present first on issues related to the physical body and changes in the development um or aging of the body and also the biochemistry.3100:03:11,340 --> 00:03:20,540And then I talk about things related to changing life circumstances that as we live life across seasons,3200:03:20,630 --> 00:03:27,460the things that we are in charge of doing or striving to do these kinds of things shift.3300:03:27,840 --> 00:03:38,660And we also just talk about the interchange of both the physical shifting and the changes in life circumstances.3400:03:39,840 --> 00:03:41,800So during adolescence,3500:03:41,800 --> 00:03:45,560we talked about how we have a lot going on in the physical body.3600:03:45,940 --> 00:03:58,320We have development of the body as a whole and of the brain and we have hormone shifts and also a lot of increased demand on the individual with things like academics,3700:03:58,330 --> 00:04:04,760independence and the social environment during pregnancy or menopause for example,3800:04:05,440 --> 00:04:18,710there are lots of physical and biochemical changes and these intersect with this increased demand on the individual and changes in the environment like increased clutter in the household,3900:04:18,720 --> 00:04:19,710more noise,4000:04:19,710 --> 00:04:20,550more visitors,4100:04:20,550 --> 00:04:21,250etcetera.4200:04:22,340 --> 00:04:28,140Today we're going to focus on the life season that has to do with aging.4300:04:28,140 --> 00:04:40,550So we're going to look at age 50 and onward and we'll use that same structure where we'll talk about the physical body and changes and we'll also talk about life seasons,4400:04:41,240 --> 00:04:42,560circumstances,4500:04:42,560 --> 00:04:43,410environments,4600:04:43,410 --> 00:04:49,060etcetera when it comes to physical changes in the body and in the brain.4700:04:50,140 --> 00:04:57,250One of the ways that the aging of the body can impact the autistic is with regard to regulation.4800:04:57,840 --> 00:05:01,950So as we've talked about on other episodes about regulation,4900:05:01,950 --> 00:05:12,350which is the centering of the individual with alertness with attention and with an emotionally calm and resilient state,5000:05:13,440 --> 00:05:22,650the autistic often has to be more intentional about how to get sensory inputs to help them feel centered.5100:05:23,640 --> 00:05:24,860For some people,5200:05:24,860 --> 00:05:27,860these inputs are involving physical activity.5300:05:27,870 --> 00:05:30,750So some may have realized that hey,5400:05:31,140 --> 00:05:37,850I feel the best when I am able to get regular bike rides,5500:05:38,630 --> 00:05:41,560I get that movement input into the brain,5600:05:41,560 --> 00:05:43,160that vestibular input.5700:05:43,840 --> 00:05:49,440And maybe this has even turned into a special interest with owning several bikes,5800:05:49,440 --> 00:05:58,440with going on bike trips with bicycle enthusiasts and entering biking events like races well,5900:05:58,440 --> 00:05:59,870when the body ages,6000:05:59,870 --> 00:06:09,860the individual may feel like not only am I being kind of robbed of my special interest if I can't keep doing these physical things,6100:06:10,540 --> 00:06:13,510which can be a big deal because,6200:06:13,520 --> 00:06:13,940you know,6300:06:13,940 --> 00:06:18,360perhaps life has revolved a lot around this hobby,6400:06:18,740 --> 00:06:24,250but also I'm not able to get the appropriate receptive input,6500:06:24,250 --> 00:06:31,250that pressure in the joints when you're pedaling the bike and the vestibular input into the brain.6600:06:31,260 --> 00:06:33,360That's that movement input.6700:06:33,370 --> 00:06:37,810And the combination of those two things really helped someone.6800:06:37,810 --> 00:06:42,550Let's say that these are the things that their nervous system needed.6900:06:43,340 --> 00:06:50,140These pressure and movement inputs have helped the person get momentum for daily activities.7000:06:50,150 --> 00:06:56,660If you haven't listened to this series yet on daily activities and getting momentum,7100:06:57,240 --> 00:07:09,660I'll put the link in the notes and perhaps this is a person where bike riding has also helped them feel centered emotionally and also more resilient for the day.7200:07:11,240 --> 00:07:18,730So for the individual who experiences this real benefit from bike riding,7300:07:18,740 --> 00:07:23,860aging can present this dilemma of how can I fill this void.7400:07:24,240 --> 00:07:32,150And a lot of people experience this kind of need to shift with aging where oh,7500:07:32,150 --> 00:07:38,060I can't do the same physical things that I have always done and enjoyed.7600:07:38,940 --> 00:07:51,500But for the individual on the spectrum who may really need a lot more intentionality to get these inputs in order to feel just right and to feel okay,7700:07:51,510 --> 00:07:52,040you know,7800:07:52,040 --> 00:08:07,610that can have a big impact on how centered they're able to feel one of the recommendations for the aging individual is to be really intentional about realizing the role that bike riding played,7900:08:07,610 --> 00:08:08,660for example,8000:08:09,240 --> 00:08:15,860and that there's a void that the person may need to get creative to fill.8100:08:16,540 --> 00:08:21,750So the ideal situation would be that the person has the self awareness.8200:08:22,340 --> 00:08:22,790That hey,8300:08:22,790 --> 00:08:34,710the reason that I love this in part is because my system really benefits from movement or it really benefits from pressure,8400:08:34,710 --> 00:08:35,620input,8500:08:35,630 --> 00:08:37,390pressure through my joints,8600:08:37,390 --> 00:08:39,050pressure into the muscles.8700:08:40,440 --> 00:08:45,410If the person is self aware about the role that bike riding plays for them,8800:08:45,420 --> 00:08:48,260but they can't bike bike ride anymore,8900:08:48,320 --> 00:08:54,300then they can start to think how else can I get pressure input,9000:08:54,310 --> 00:08:56,760How else can I get movement input?9100:08:58,140 --> 00:09:05,060So they may need to think about more forgiving ways to get their system,9200:09:05,440 --> 00:09:07,450this type of thing that they need.9300:09:08,240 --> 00:09:14,240Someone could get pressure and movement input by laying in a hammock.9400:09:14,240 --> 00:09:17,400So they have pressure all along their back,9500:09:17,410 --> 00:09:21,410all from the tips of their toes up to their neck,9600:09:21,410 --> 00:09:26,450and their shoulders in their head and some movement rocking back and forth.9700:09:27,120 --> 00:09:53,750Somebody might have a big swing in the backyard and maybe it's um an old fashioned tree swing or they've got um a tire swing that their grandkids plan maybe being able to sit in there and have this movement of swinging that might really hit the spot for their nervous system.9800:09:53,760 --> 00:09:56,680It's not something that we automatically think of,9900:09:56,680 --> 00:10:02,960but it takes this awareness, this intentionality to it doesn't it?10000:10:03,440 --> 00:10:07,920Someone else might try yoga to get pressure in their joints.10100:10:07,930 --> 00:10:41,050A down dog gives a lot of pressure throughout their or different parts of the sun salutation. yin yoga is something that offers a lot of holding of poses and it's supposed to be you know a very restorative kind of practice and that be really match where your body is at during that different life season that I need something that's restorative rather than something that ends up feeling a bit punishing to me at this stage of life.10200:10:42,740 --> 00:11:08,780Some people get inputs through swimming or doing things in a pool where they feel that resistance through the water and that is some pressure input or they're able to you know still slide down the pool slide and that gives them some really nice vestibular input or movement input whatever it is that your nervous system needs.10300:11:08,790 --> 00:11:15,960You may have to have some creativity about how else can I get my system,10400:11:15,960 --> 00:11:21,260what it needs with regard to sensory inputs to feel just right,10500:11:23,640 --> 00:11:27,860this is similar to other life seasons for example,10600:11:27,870 --> 00:11:39,890high schoolers who graduate have to do a lot of that same intentional shifting like oh I used to be on the diving team or um you know I used to go to PE (physical education)10800:11:40,070 --> 00:11:40,820Class,10900:11:40,820 --> 00:11:56,590I used to have to do these running laps or this game or that game and now there isn't this physical activity built in to my existence and if there's not that self awareness,11000:11:57,140 --> 00:12:04,960that movement and pressure played a role in centering and helping this person get going,11100:12:04,970 --> 00:12:09,650helping them calm down when they were too elevated.11200:12:10,040 --> 00:12:10,950You know,11300:12:10,960 --> 00:12:12,830without that self awareness,11400:12:12,830 --> 00:12:14,580they won't be able to shift.11500:12:14,590 --> 00:12:19,760So this is not only something that happens in a later life season,11600:12:20,140 --> 00:12:31,390but it often is part of that shifting mindset of what do I need and how can I get that now?11700:12:31,400 --> 00:12:42,740The physical body is not the only thing that's changing as far as our aging joints or muscles or uh maybe our physical endurance,11800:12:42,750 --> 00:12:47,080but the brain is also an organ that's going to be aging.11900:12:47,090 --> 00:12:50,050Even for people who age really well,12000:12:50,060 --> 00:12:54,410there will be age related changes in the brain as humans.12100:12:54,410 --> 00:13:00,560We just all are going to experience that change as related to aging.12200:13:01,240 --> 00:13:07,260One of the things that happens with the aging of the brain is a slowing of thought process,12300:13:07,840 --> 00:13:12,180a difficulty with the efficiency of recalling information,12400:13:12,740 --> 00:13:15,440that's the tip of the tongue phenomenon,12500:13:15,440 --> 00:13:22,850or I forget the name of this thing or this person or I can't remember why I walked into this room.12600:13:24,140 --> 00:13:30,210These changes have a lot to do with the center of the brain and its connections with the front of the brain.12700:13:30,230 --> 00:13:42,860And one of the reasons there are changes with aging in this area is that the blood vessels that give the brain oxygen and energy are really large and open.12800:13:43,250 --> 00:13:56,020They're the biggest on the outside of the brain and the vessels curve and twist and go deeper and deeper into the brain and as they enter the brain and go deeper,12900:13:56,020 --> 00:14:02,980they also get smaller and smaller and in the center of the brain they end up being very small.13000:14:02,980 --> 00:14:21,050You have little capillaries in there and with age our smallest vessels may have the most difficulty getting blood traffic through and we may have kind of a sensitivity in the areas of the brain that are fed by some of these small vessels.13100:14:22,040 --> 00:14:26,960So we can start to have more problems with the thinking skills related to this area.13200:14:27,340 --> 00:14:34,560And these skills that are related to that area often fall within the domain of executive function skills.13300:14:36,240 --> 00:14:36,610Well,13400:14:36,620 --> 00:14:46,050everyone on the spectrum will have some challenge in the area of executive function already more so than the neuro typical individual will.13500:14:46,640 --> 00:14:51,180I'm planning on doing a series on executive function in the future.13600:14:51,740 --> 00:14:55,280But if you would like a really good resource to look at now,13700:14:55,340 --> 00:14:58,640I look the book series called smart but scattered,13800:15:00,140 --> 00:15:03,350there are also lots of other books and resources out there.13900:15:03,540 --> 00:15:10,020An executive function and you're welcome to choose one that fits your needs in short,14000:15:10,020 --> 00:15:15,420executive function includes lots of brain skills like planning ahead,14100:15:15,430 --> 00:15:19,010understanding what is most and least important.14200:15:19,020 --> 00:15:30,560Thinking quickly getting started with the task finishing multiple steps of a task handling multiple things coming at you in succession.14300:15:30,940 --> 00:15:47,200Retrieving memories etcetera because this is an ability that's sensitive to the aging process and every autistic individual has some pattern of difficulty developmentally.14400:15:47,210 --> 00:15:52,950What we typically see with aging is that these areas of executive function,14500:15:53,440 --> 00:16:02,240they become more difficult because executive function abilities impact thinking skills like attention,14600:16:02,240 --> 00:16:08,750mental organization as well as behavior patterns like getting started with the task.14700:16:09,270 --> 00:16:13,800The individual may show shifts in these areas.14800:16:13,810 --> 00:16:17,660So the shifts are related to aging alone,14900:16:18,140 --> 00:16:26,060although it's aging within an area of your ability that was already sensitive or already weak.15000:16:26,740 --> 00:16:35,750So sometimes what happens is that we do see some increased difficulty with executive function in the autistic,15100:16:35,760 --> 00:16:39,760more so than for the neurotypical,15200:16:40,540 --> 00:16:46,490although everyone who's aging will experience more difficulty in that area than they did in their twenties,15300:16:46,490 --> 00:16:47,470for example,15400:16:48,740 --> 00:17:02,570I've had the privilege of working with autistic individuals into their eighth decade and I've worked with our dementia clinic to determine whether an individual has dementia or an undiagnosed autism spectrum condition,15500:17:02,580 --> 00:17:11,670which is only just impacted by age that there's no um separate disease process that we would call a dementia.15600:17:12,240 --> 00:17:13,940When I'm talking about dementia,15700:17:13,940 --> 00:17:20,460I'm talking about the presence of changes in the cells that advance.15800:17:20,460 --> 00:17:25,760So there's a degeneration that's part of a disease process itself.15900:17:26,540 --> 00:17:41,770So what we're contrasting is that autistics may have increased difficulty with aging even in the absence of any kind of overlay of a new medical process like a dementia.16000:17:42,440 --> 00:17:44,150If you look through the literature,16100:17:44,150 --> 00:17:52,270there really are not good statistics about how frequently dementia occurs in autism,16200:17:52,740 --> 00:17:53,690particularly.16300:17:53,690 --> 00:18:04,330The reason for this is that we have not captured autism in adults and aging adults enough to actually look at this.16400:18:04,340 --> 00:18:05,120Um,16500:18:05,130 --> 00:18:15,790so I can only tell you what my personal experience has been in my own experience in seeing people from the dementia clinic.16600:18:15,800 --> 00:18:17,720Seeing people who are aging,16700:18:17,720 --> 00:18:24,950I don't tend to think that there's any increased risk of a disease process that we would call dementia.16800:18:25,340 --> 00:18:25,710Um,16900:18:25,720 --> 00:18:27,350I haven't seen this.17000:18:28,140 --> 00:18:35,500I have seen people present with concerns that perhaps there is a dementia or disease process.17100:18:35,510 --> 00:18:38,100And after assessing this,17200:18:38,110 --> 00:18:45,380it seems to be that this is part of the aging process and not a separate disease process.17300:18:47,640 --> 00:18:52,460This is not to say that they aren't noticing differences in their home environment.17400:18:52,840 --> 00:18:58,010Executive function certainly does impact day to day life.17500:18:58,020 --> 00:19:03,100So someone may be having more difficulty getting started with tasks,17600:19:03,110 --> 00:19:04,860taking care of themselves,17700:19:04,890 --> 00:19:10,960really engaging in life being active in what they're needing to get done during the day.17800:19:11,630 --> 00:19:19,170This may be a feature that the autistic experiences or expresses during the aging process,17900:19:20,440 --> 00:19:20,930but again,18000:19:20,930 --> 00:19:23,840we don't even know how typical that is.18100:19:23,850 --> 00:19:31,300So all the people that I see are patients who are presenting because they're experiencing some difficulty.18200:19:31,310 --> 00:19:45,590So it would be such a wonderful thing if in the future we're able to capture people with neuro diversity across adulthood and aging and we can actually see,18300:19:46,140 --> 00:19:46,690um,18400:19:46,700 --> 00:20:04,550how many of these clients are really um doing well and aging well and participating in things and have good mood and engagement and how many perhaps are struggling or showing some increased difficulty.18500:20:05,140 --> 00:20:11,480One of the recommendations for the autistic individual is to focus on living a healthy lifestyle.18600:20:11,490 --> 00:20:14,410So this is a good recommendation for anyone,18700:20:14,420 --> 00:20:15,090of course,18800:20:15,090 --> 00:20:22,710but anything that helps the health of the blood vessels will be likely supportive during aging.18900:20:22,720 --> 00:20:25,060And that's true for all of us.19000:20:25,540 --> 00:20:25,900Um,19100:20:25,900 --> 00:20:30,650but especially if a person has a weakness and executive function already,19200:20:30,660 --> 00:20:31,430um,19300:20:31,440 --> 00:20:35,520they may really want to focus on that even more intentionally.19400:20:35,530 --> 00:20:37,780So watching things like cholesterol,19500:20:37,790 --> 00:20:38,890high blood pressure,19600:20:38,890 --> 00:20:40,060diabetes,19700:20:40,070 --> 00:20:44,050these are all things that can stress the blood vessel systems.19800:20:44,440 --> 00:20:48,620And although we can't stop the impact of aging on the blood vessels,19900:20:48,630 --> 00:20:54,490there are probably choices that we can make to just help support the health of the vessels.20000:20:54,500 --> 00:20:59,010And of course this does not constitute medical advice for anyone.20100:20:59,020 --> 00:21:04,360I really encourage you to engage with your doctors about what would be healthy for you.20200:21:04,740 --> 00:21:10,510But certainly if you want to give your body what it needs to age well,20300:21:10,520 --> 00:21:15,540um things like healthy diet and movement and exercise and sleep.20400:21:15,550 --> 00:21:20,360These are all things that may support your body as you age.20500:21:21,040 --> 00:21:33,950Let's shift from talking about changes in the physical body and changes in the brain to talking about changes in our environment or what's going on in life during this season,20600:21:35,940 --> 00:21:44,440one of the things I want to talk about is that there's often less built in structure to our life during that season,20700:21:45,340 --> 00:21:53,770because people often are either cutting down on the number of hours they're working or they've retired,20800:21:54,750 --> 00:21:57,220their kids aren't living at home anymore,20900:21:57,220 --> 00:21:58,810they have an empty nest,21000:21:59,540 --> 00:22:08,860um there are less daily activities to kind of move people forward that I have to get going because I have to go to this place,21100:22:09,340 --> 00:22:24,300so work or the schedule of the Children may have provided some inherent structure to the day and cutting down on the structure that helps people get momentum for their day,21200:22:24,310 --> 00:22:29,660can mean that it's harder for them to get momentum for activities.21300:22:30,440 --> 00:22:39,050The autistic who lean toward anxiety or wanting to know what the day would likely bring benefited from structure because it felt supportive,21400:22:40,140 --> 00:22:41,160in contrast,21500:22:41,160 --> 00:22:44,150the autistic who had trouble with momentum,21600:22:44,160 --> 00:22:45,790like I feel lazy,21700:22:45,790 --> 00:22:48,320I feel like I just can't get going,21800:22:48,320 --> 00:23:01,360I don't know where to start benefited from structure because it helped propel them forward with tasks and daily activities and without the propelling force of a schedule,21900:23:02,040 --> 00:23:10,260this group of people on the spectrum find it really challenging to find an internal source of momentum.22000:23:11,640 --> 00:23:14,140Um they often struggle to say,22100:23:14,140 --> 00:23:18,520oh I can plan my day this way or these are things that need to get done.22200:23:18,530 --> 00:23:23,050Even issues of self care may kind of be put on the back burner,22300:23:23,050 --> 00:23:23,360like,22400:23:23,370 --> 00:23:23,630oh,22500:23:23,630 --> 00:23:26,920I used to take a shower before work every day,22600:23:26,920 --> 00:23:28,670but now I don't have to work.22700:23:28,940 --> 00:23:33,170So can they have this internal momentum towards self care?22800:23:34,320 --> 00:23:42,200Some would say they used to shower and eat breakfast and take medication as part of their morning routine,22900:23:42,640 --> 00:23:45,060but if they're not even leaving the house,23000:23:45,060 --> 00:23:48,090the morning routine doesn't get done as consistently,23100:23:48,100 --> 00:23:52,660so pretty soon doing one activity can really feel demanding,23200:23:52,670 --> 00:23:53,210like,23300:23:53,210 --> 00:23:53,360oh,23400:23:53,360 --> 00:23:56,860I can't get groceries today because I'm also getting a haircut,23500:23:57,640 --> 00:23:58,870whereas before,23600:23:58,870 --> 00:24:01,100when our day was so scheduled,23700:24:01,210 --> 00:24:10,850we had this just internal momentum and we didn't have to get our energy up to do something.23800:24:11,540 --> 00:24:18,770One thing for the individual to consider then is their need to make an artificial structure during retirement.23900:24:19,640 --> 00:24:26,560Some people may wish to volunteer or have other reasons to leave the house on a particular schedule.24000:24:27,240 --> 00:24:32,080They may make a list of life areas that they want to attend to every week.24100:24:32,080 --> 00:24:35,340So one person may say,24200:24:35,350 --> 00:24:40,620I really benefit from saying I want to learn something new every week.24300:24:40,630 --> 00:24:45,610I want to see a friend every week I exercise on the schedule.24400:24:45,620 --> 00:24:54,170I do chores on this schedule in having a schedule or a structure helps them stay engaged in life,24500:24:54,540 --> 00:25:02,170helps them have momentum for what needs to get done in order to have really a balanced and healthy lifestyle.24600:25:04,240 --> 00:25:16,560Another thing that's changing during the season of life is that there's a lot more engagement that's required with doctors and a lot more instruction to change,24700:25:17,940 --> 00:25:22,260even though there's less engagement with the external world.24800:25:22,270 --> 00:25:23,710In some respects,24900:25:23,720 --> 00:25:34,670there's increasing demand to engage in self care to visit and communicate with physicians and to change all of a sudden,25000:25:34,670 --> 00:25:41,620people are telling you to change your lifestyle what you eat or drink what medicines you take,25100:25:41,630 --> 00:25:47,090instructions to change or shift gears can feel really demanding,25200:25:47,100 --> 00:25:53,260and sometimes the individual may kind of bow out of the whole process and say,25300:25:53,270 --> 00:25:55,000I'm just not going to do this.25400:25:55,640 --> 00:26:03,860Doctors and family can try to keep in mind the demands on the individual and how that may feel to the person on the spectrum,25500:26:04,640 --> 00:26:08,190Maybe they're more likely to pick their battles,25600:26:08,200 --> 00:26:09,310so to speak.25700:26:09,310 --> 00:26:09,910So,25800:26:09,920 --> 00:26:17,660understanding how hard it is for the person to engage with people to shift what they're eating.25900:26:17,660 --> 00:26:18,770For example,26000:26:19,240 --> 00:26:19,820you know,26100:26:19,820 --> 00:26:25,450if somebody has lived on pasta because that's all they can tolerate with regard to texture,26200:26:26,040 --> 00:26:26,500um,26300:26:26,510 --> 00:26:26,960you know,26400:26:26,960 --> 00:26:36,350harping on and um talking again and again about vegetables may not be the battle that they want to have for this person.26500:26:37,140 --> 00:26:37,450So,26600:26:37,450 --> 00:26:43,390there can be both this increased environmental demand in the sense of medical issues.26700:26:43,400 --> 00:26:48,270Doctors waiting rooms calling people asking questions.26800:26:48,940 --> 00:26:49,590Um,26900:26:49,600 --> 00:26:57,870but there's also this decreased environmental structure that previously may have been supportive,27000:26:57,880 --> 00:26:58,250like,27100:26:58,250 --> 00:26:58,370oh,27200:26:58,370 --> 00:27:00,020I know what I do next.27300:27:00,030 --> 00:27:01,950This helps me get out of the house,27400:27:01,960 --> 00:27:09,450I don't have to effort to get up and take a shower because that's just what I do every morning before I go to work.27500:27:10,340 --> 00:27:11,280As you can see,27600:27:11,280 --> 00:27:29,370the aging season of life presents similar challenges in the sense of changes in the physical person and the environment when we compare this to other seasons of life and these shifts can lead to shifts in the way that the autistic characteristics feel,27700:27:29,380 --> 00:27:35,390how they're experienced by the individual and also how they are expressed.27800:27:35,390 --> 00:27:41,990So how other people see that this person is doing A spouse may say,27900:27:41,990 --> 00:27:54,960I don't understand because my husband would get up and do this whole routine every day for 40 years at his job and now he can't get going with anything.28000:27:55,440 --> 00:27:57,030So is this a dementia,28100:27:57,030 --> 00:27:58,010what's happening?28200:27:58,020 --> 00:28:03,600And sometimes it's just the total lack of structure that's,28300:28:03,610 --> 00:28:04,050you know,28400:28:04,050 --> 00:28:14,850all these this momentum has been taken and we can see that the autistic characteristics that have always been there are expressed differently.28500:28:15,940 --> 00:28:31,950It's nice to have an increased understanding that this is common and we can also have a context for what we might be seeing as well as more intentionality about how we might want to enter this season.28600:28:32,340 --> 00:28:35,450So how else can I get sensory inputs?28700:28:35,450 --> 00:28:39,260How else can I create structure and momentum?28800:28:39,270 --> 00:28:42,340How can I communicate with my doctors?28900:28:42,340 --> 00:28:44,510That a lot of change is really,29000:28:44,510 --> 00:28:47,160really impossible for me.29100:28:47,170 --> 00:28:49,450It's just I just,29200:28:49,460 --> 00:28:54,560I have a limit on how much I can change and maintain over time.29300:28:55,640 --> 00:29:03,670Let's be intentional about how we enter certain life seasons and also support each other during their life seasons.29400:29:04,640 --> 00:29:11,620Thank you so much for joining me for this series and how autistic characteristics can shift over life seasons.29500:29:12,240 --> 00:29:26,960I hope you join me again soon and please remember to write down questions that you want covered in future podcast episodes too, adultandgeriatricautism@gmail.com
 
 
 

Shifting Autistic Characteristics Across The Lifespan: The Experience of Women

Join Dr. Regan for the third episode in this series about how autistic characteristics may shift across the lifespan. This episode focuses on the life seasons of women, including monthly cycles, pregnancy, and menopause. Tune in next time for the final episode in the series which will focus on autism and aging. 
You may also enjoy the episode: Autism in Women
Published Articles for Additional Reading:
“Life is Much More Difficult to Manage During Periods”: Autistic Experiences of Menstruation
Prevalence of premenstrual syndrome in autism: a prospective observer-rated study
Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review
Exploratory Study of Childbearing Experiences of Women with Asperger Syndrome
‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause
 
Dr. Regan's Resources
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
Read the episode content:
100:00:04,740 --> 00:00:06,280Hi and welcome back.
200:00:06,290 --> 00:00:08,130This is Dr Theresa Regan,
300:00:08,140 --> 00:00:10,070a neuropsychologist,
400:00:10,080 --> 00:00:13,210mother of a teen on the spectrum author,
500:00:13,210 --> 00:00:17,250speaker and your podcast host for autism in the adult.
600:00:17,740 --> 00:00:27,800You are joining us for the 3rd episode in a four part series on variations in the characteristics of autism across the lifespan.
700:00:29,140 --> 00:00:46,260Our first episode focused on just foundational knowledge about neurology and why we can expect neurologic characteristics to feel and be expressed with some variation across time and also across context.
800:00:47,640 --> 00:00:56,760The second episode focused on adolescents as a season of the lifespan during which some of these variations can become really noticeable.
900:00:57,440 --> 00:00:59,470There's chemical changes going on,
1000:00:59,470 --> 00:01:00,730physical development.
1100:01:00,740 --> 00:01:09,260A lot of increase in independence is requested of the person and also just the demands of social interaction,
1200:01:09,270 --> 00:01:11,010academic demands,
1300:01:11,020 --> 00:01:15,560all these things converging to sometimes make that perfect storm.
1400:01:17,140 --> 00:01:32,790This third episode is going to focus on women because there are really some pretty market hormone shifts that females experience across their lifespan and these can be accompanied by shifts in the experience of autism.
1500:01:32,800 --> 00:01:37,000So we want to focus specifically on that topic today.
1600:01:37,000 --> 00:01:38,450For the episode,
1700:01:40,740 --> 00:01:49,760we're going to review issues related to a woman's monthly cycle to pregnancy and post pregnancy issues and also to menopause.
1800:01:50,940 --> 00:02:04,160I'm going to include links to some articles in the show notes for those who want to read more and I'll let you know that many of the articles really focus on solely identifying that this area needs more study.
1900:02:04,170 --> 00:02:08,570So you may start to read thinking that it's going to tell you something.
2000:02:08,570 --> 00:02:10,420We don't know when really,
2100:02:10,420 --> 00:02:11,260it's just saying,
2200:02:11,260 --> 00:02:11,580gosh,
2300:02:11,580 --> 00:02:13,110there's not much out there.
2400:02:13,120 --> 00:02:27,920We really should be looking at this more in particular and then other studies focus on gathering comments and taking surveys of women on the spectrum and really listening to the experiences of autistic women,
2500:02:27,930 --> 00:02:30,830which I think is really informative and helpful.
2600:02:30,830 --> 00:02:37,310So we are going to kind of focus on that side of things for the majority of this episode.
2700:02:39,540 --> 00:02:42,960So we focused on adolescents in the second episode.
2800:02:43,340 --> 00:02:52,270But here we're going to focus specifically on the seasons and a female's lifespan beyond adolescence.
2900:02:52,270 --> 00:02:57,050So we are going to start with the topic of monthly cycles in particular.
3000:02:57,740 --> 00:02:59,850So these begin during adolescence,
3100:02:59,850 --> 00:03:06,690but they continue across much of the female's lifespan and they can impact individuals differently.
3200:03:06,700 --> 00:03:07,280So,
3300:03:07,280 --> 00:03:09,560across all human females,
3400:03:09,560 --> 00:03:18,830there is a lot of variation on how that cycle impacts them how much um consistency they experience in that area,
3500:03:18,840 --> 00:03:22,500what kinds of changes in their physical state,
3600:03:22,500 --> 00:03:24,950their emotional state they might experience.
3700:03:25,830 --> 00:03:28,860And this is really true for the autistic female as well.
3800:03:29,540 --> 00:03:45,260One overall theme in the comments of women who are on the spectrum is that many of the issues that can be a challenge for them on a day to day basis can really feel like more of a challenge just before and also during their cycle.
3900:03:45,940 --> 00:03:50,240Many of the characteristics specifically mentioned by women on the spectrum.
4000:03:50,240 --> 00:03:56,260Focus around sensory sensitivities emotional regulation.
4100:03:56,570 --> 00:04:02,550So that ability to feel calm and centered social communication.
4200:04:02,940 --> 00:04:05,760So figuring out what am I feeling,
4300:04:06,240 --> 00:04:08,230Finding words to express,
4400:04:08,230 --> 00:04:17,450that communicating with others in a social exchange and also feeling flexible in everyday situations.
4500:04:17,460 --> 00:04:18,430So,
4600:04:18,440 --> 00:04:33,460um I really prefer routine and now this unexpected barrier has happened and I also happened to be in that time of my cycle where dealing with these unexpected things feel so much harder.
4700:04:34,640 --> 00:04:45,460One woman said it can become much more overwhelming and harder to maintain control of the things that already take a lot of effort for us to keep on top of during our period.
4800:04:46,740 --> 00:04:52,460One woman said I have more meltdowns and worse meltdowns just before my period.
4900:04:52,840 --> 00:05:02,970And she also noted that understanding that this is what happens in her life makes those episodes in those periods of time more manageable.
5000:05:02,970 --> 00:05:04,130So they don't feel,
5100:05:04,140 --> 00:05:09,650she doesn't feel quite so thrown off now that she understands what to expect,
5200:05:10,040 --> 00:05:11,660although it is challenging.
5300:05:12,940 --> 00:05:20,260Some women on the spectrum reported that self injury behavior was more common before periods as well.
5400:05:20,640 --> 00:05:28,970Uh for some women's self injury includes um cutting or biting themselves,
5500:05:28,980 --> 00:05:30,740hitting their head on something,
5600:05:30,740 --> 00:05:31,860hitting their body.
5700:05:32,440 --> 00:05:36,360And there was a 2008 study which,
5800:05:36,370 --> 00:05:36,870you know,
5900:05:36,870 --> 00:05:43,150that's been a while ago and it used some diagnostic criteria that are out of date.
6000:05:43,540 --> 00:05:47,700And there weren't a lot of follow up studies in this regard,
6100:05:47,700 --> 00:05:49,650but I will link it in the show notes,
6200:05:49,910 --> 00:06:08,350but they found that if they looked at women who experienced Um greater than or equal to 30 difficulty with emotions and other things just prior to their periods and during their periods,
6300:06:08,740 --> 00:06:24,950that the prevalence of this significant shift And their ability to stay centered was 92% in the autism group and 11% in the control group,
6400:06:25,340 --> 00:06:28,110meaning that in their study again,
6500:06:28,110 --> 00:06:31,090this has not been replicated that I can see,
6600:06:31,090 --> 00:06:38,090but it does really um hold true as far as what we typically see in women,
6700:06:38,090 --> 00:06:44,260that this significantly more difficult experience of emotions.
6800:06:44,540 --> 00:06:52,700Um that's really much higher in the autism female group than in the neuro typical group who are experiencing monthly shifts.
6900:06:55,240 --> 00:07:05,650The hormone shift themselves can really heighten sensory experiences and they can make emotions more intense or even just come out easier.
7000:07:05,650 --> 00:07:10,580Like um I might be able to think or feel something inside typically,
7100:07:10,580 --> 00:07:13,230but now during this period of my cycle,
7200:07:13,230 --> 00:07:32,860it just really easily comes out and I feel like I don't have as much control over that gate of what I let out and what I keep in another layer seems to be that monthly cycles really increase the amount of sensory experiences and also often involve pain or discomfort.
7300:07:33,340 --> 00:07:40,200So the women on the spectrum is processing quite a bit more experience and discomfort than typical.
7400:07:40,210 --> 00:07:47,630So it's not only that hormones make the common things more disruptive,
7500:07:47,640 --> 00:07:52,450but also you're experiencing even more sensation than typical.
7600:07:53,140 --> 00:07:59,120This can increase the difficulty that women have during their periods with focusing,
7700:07:59,130 --> 00:08:00,640communicating,
7800:08:00,650 --> 00:08:03,360staying centered in their experiences.
7900:08:03,740 --> 00:08:06,860And one female on the spectrum said,
8000:08:06,860 --> 00:08:07,330you know,
8100:08:07,340 --> 00:08:12,330there's so much more coming at me and life is intense enough as it is,
8200:08:12,330 --> 00:08:20,360but every month I go through this time of even more intensity and that's really challenging for me to sort through.
8300:08:21,540 --> 00:08:35,090In addition to descriptions of the shifts and experience a subgroup of autistic females also expressed that they really wish they had more preparation for what the experience would be like.
8400:08:35,100 --> 00:08:39,630So for many on the spectrum who love routine or repetition,
8500:08:39,630 --> 00:08:41,200preparation detail,
8600:08:41,200 --> 00:08:43,260knowing what's going to happen ahead of time,
8700:08:44,140 --> 00:08:44,580you know,
8800:08:44,580 --> 00:08:52,260having as much information as possible related to monthly cycles would have felt more grounding to them.
8900:08:52,640 --> 00:08:52,850Mhm.
9000:08:54,040 --> 00:09:00,170The information they wanted more of included practical things like where do I get these supplies?
9100:09:00,170 --> 00:09:03,280What kinds of things do I need to buy also?
9200:09:03,280 --> 00:09:06,150How long is this expected to last every month?
9300:09:06,640 --> 00:09:12,460How to communicate their needs if they're at school and they need to leave to go to the restroom,
9400:09:12,940 --> 00:09:13,360you know,
9500:09:13,360 --> 00:09:19,750having some preparation as to what kinds of things they could do in different situations.
9600:09:20,340 --> 00:09:20,550Mhm.
9700:09:21,240 --> 00:09:30,000They also said that they wished they had understood that women experience variation um across time and also between women,
9800:09:30,010 --> 00:09:37,150you know that their best friend may have quite a different experience than they do and that's common.
9900:09:38,040 --> 00:09:48,520Um So their experience is likely to be somewhat different than their peers experience and that doesn't mean that something is wrong or that they need to feel anxious about that.
10000:09:48,530 --> 00:10:03,050The important thing is for them to notice what is typical for them and to communicate with family or doctors if they're typical experience shifts or it's disrupted steps in some way or changes.
10100:10:04,440 --> 00:10:09,440They also voiced that they wish they had understood that pain and discomfort was really normal.
10200:10:09,450 --> 00:10:14,780Sometimes they felt like it meant something that was really dangerous to them.
10300:10:14,790 --> 00:10:19,200Like maybe this was not supposed to be true,
10400:10:19,200 --> 00:10:21,260Maybe it meant that something was wrong,
10500:10:21,260 --> 00:10:22,260that they were dying,
10600:10:22,260 --> 00:10:28,980that they had a medical problem and also that emotional intensity and shifts were very common.
10700:10:28,990 --> 00:10:32,490So sometimes they had the basic physical information,
10800:10:32,500 --> 00:10:40,260but they really didn't understand that they can expect emotions to feel different during this period of time.
10900:10:42,240 --> 00:10:55,560Some individuals on the spectrum really struggle with health anxiety anyway and may quickly feel nervous if they think that they might be sick or if they don't know what to expect in their physical experience.
11000:10:56,440 --> 00:11:02,360Other women said it was quite a struggle because there was variation for a month to month.
11100:11:02,360 --> 00:11:06,440And so they didn't really know exactly what day they're cycle would start,
11200:11:06,450 --> 00:11:07,860how it would feel,
11300:11:07,860 --> 00:11:09,190how long it would last.
11400:11:09,200 --> 00:11:13,360And even though they had a sense of their typical rhythm,
11500:11:13,740 --> 00:11:14,750there's always,
11600:11:14,760 --> 00:11:15,070you know,
11700:11:15,070 --> 00:11:18,620some variation is this going to start today or tomorrow,
11800:11:18,630 --> 00:11:20,690How heavy is it going to be?
11900:11:20,700 --> 00:11:28,230Uh and so that may not feel like a big variation to neuro typical females,
12000:11:28,230 --> 00:11:34,640but for the autistic female that relies on repetition and detail and knowing what's going to happen.
12100:11:34,650 --> 00:11:35,280You know,
12200:11:35,280 --> 00:11:43,960sometimes that anxiety about when is this going to happen and what's it going to be like can be kind of a real struggle.
12300:11:45,640 --> 00:11:50,460The next season we'll touch on is the season of pregnancy and post pregnancy.
12400:11:50,840 --> 00:11:52,900And this could include breastfeeding.
12500:11:53,540 --> 00:11:55,960For women who experience this season,
12600:11:55,970 --> 00:12:08,260there are many significant hormone changes of course and a lot of physical changes and some women really struggle with feeling like this isn't my body anymore.
12700:12:08,540 --> 00:12:11,550And I have all this increased discomfort,
12800:12:11,560 --> 00:12:13,110I have sleep problems,
12900:12:13,110 --> 00:12:13,980fatigue,
13000:12:13,980 --> 00:12:15,350I'm nauseated,
13100:12:15,350 --> 00:12:17,560my appetite is different.
13200:12:17,560 --> 00:12:21,950I don't fit in my favorite comfortable clothes anymore.
13300:12:22,340 --> 00:12:27,860And so having so much different about their own physical experience.
13400:12:28,240 --> 00:12:32,460In addition to all the shifting hormones can really be impactful.
13500:12:33,940 --> 00:12:38,350Many neuro typical women experience sensory symptoms when they're pregnant.
13600:12:38,740 --> 00:12:43,260So a lot of times that involves increased smell sensitivity,
13700:12:43,270 --> 00:12:52,450like I cannot stand the smell of food or cologne or the pets have such a strong scent to them now.
13800:12:53,240 --> 00:13:03,060And sometimes that's most noticeable in the early months of pregnancy and then just kind of peters out for the neuro typical female,
13900:13:03,440 --> 00:13:07,420but for the autistic female who has sensory characteristics.
14000:13:07,430 --> 00:13:07,960Anyway,
14100:13:07,960 --> 00:13:21,200this can really be a time of heightened difficulty with a variety of census rather than just smell Some women report needing more deep pressure during pregnancy.
14200:13:21,210 --> 00:13:21,850Um,
14300:13:21,850 --> 00:13:31,730we've talked about deep pressure and other episodes that this is something that can be calming and grounding and centering for the person on the spectrum.
14400:13:31,730 --> 00:13:40,430And that is why some will use weighted blankets and other methods to get really some deep pressure that's calming.
14500:13:40,450 --> 00:13:44,280And so the women who report this feel like during their pregnancy,
14600:13:44,280 --> 00:13:48,850they noticed they needed more in order to feel calm and centered.
14700:13:51,440 --> 00:13:54,820Some talked about using things like massage.
14800:13:54,830 --> 00:14:00,000Other women talked about wrapping things around like their fingers,
14900:14:00,000 --> 00:14:00,820for example,
15000:14:00,820 --> 00:14:02,180or their hands.
15100:14:02,230 --> 00:14:05,010Some would have their pets lay on top of them.
15200:14:05,020 --> 00:14:19,290So whatever way they could get some extra pressure really helped them feel more grounded and calm nausea and sensitivity to food textures and sent maybe heightened.
15300:14:19,300 --> 00:14:26,280And many of the individuals on the spectrum already have some repetition and how they eat.
15400:14:26,290 --> 00:14:30,690So they may go on what I call food jags where,
15500:14:30,700 --> 00:14:31,380oh,
15600:14:31,380 --> 00:14:37,550I'm so into yogurt and salami and they'll eat that for a couple of months and then switch.
15700:14:37,840 --> 00:14:39,740And that's without pregnancy.
15800:14:39,740 --> 00:14:43,610And so when you add the pregnancy and there can be cravings,
15900:14:43,620 --> 00:14:48,160there can be nausea texture sensitivities that are even more significant.
16000:14:48,640 --> 00:14:55,530Sometimes you'll get this reliance on a few foods for nutrition and that's not necessarily a problem,
16100:14:55,530 --> 00:15:03,060but it may be something that they want to monitor and make sure they're getting enough nutrition during their pregnancy,
16200:15:03,940 --> 00:15:06,960emotions can be extra challenging to manage.
16300:15:07,340 --> 00:15:10,550Similar to what we discussed about monthly cycles.
16400:15:11,150 --> 00:15:16,350The impact of hormone changes on emotions during pregnancy may be really noticeable.
16500:15:16,740 --> 00:15:23,060And many individuals on the spectrum also experience sleep disturbance at the best of times.
16600:15:23,540 --> 00:15:29,360And the extra physical changes during pregnancy can increase problems resting and sleeping.
16700:15:30,240 --> 00:15:35,890So this decreased sleep may reduce resilience even more for things like staying centered,
16800:15:35,900 --> 00:15:36,960staying calm,
16900:15:36,960 --> 00:15:38,080paying attention,
17000:15:38,090 --> 00:15:43,150handling unexpected changes and socially communicating.
17100:15:43,480 --> 00:15:45,010This is what I'm experiencing.
17200:15:45,010 --> 00:15:46,250This is what I need,
17300:15:46,640 --> 00:15:51,510what do you need And also similar to monthly cycles,
17400:15:51,510 --> 00:16:00,000having to process so much more sensation for such a long period of time can also be noticeable to the autistic woman.
17500:16:00,440 --> 00:16:11,380So once the baby is born there are hormonal shifts again and this can be impacted by whether or not the mother chooses to breastfeed or use formula.
17600:16:11,560 --> 00:16:35,860And so awareness of how hormone shifts can impact this experience and the expression of autistic characteristics that can help the mother and her partner and her friends and her family at least have this context for what she is experiencing and then they can think um kind of intentionally about what she needs and how to be supportive.
17700:16:36,240 --> 00:16:37,980So they can think about Heywood,
17800:16:37,980 --> 00:16:39,150deep pressure help.
17900:16:39,740 --> 00:16:54,210Um and thinking in that way may really help this season go more smoothly so that she feels more resilient as we talked about in the previous episodes,
18000:16:54,210 --> 00:17:03,670Physical changes are often occurring at the same time of life that a lot of just life complexities land on our doorstep.
18100:17:03,680 --> 00:17:05,590And when we talk about pregnancy,
18200:17:05,600 --> 00:17:09,360we're of course talking about all the life changes that go with it,
18300:17:09,640 --> 00:17:12,300so changes in the physical environment,
18400:17:12,300 --> 00:17:13,010for example,
18500:17:13,010 --> 00:17:13,890of the house,
18600:17:14,240 --> 00:17:16,610there's extra furniture in your space,
18700:17:16,610 --> 00:17:18,630people are moving things around,
18800:17:18,830 --> 00:17:23,060you might have to get rid of things that actually you feel kind of attached to.
18900:17:23,540 --> 00:17:28,910Uh and sometimes we just have to get used to having more clutter around and this,
19000:17:29,340 --> 00:17:29,560you know,
19100:17:29,560 --> 00:17:35,270maybe stressful for the person that likes their physical environment to be a certain way.
19200:17:36,940 --> 00:17:43,140Some autistics really depend on their physical environment to help them feel grounded and calm.
19300:17:43,150 --> 00:17:46,670Um there's a subset of people on the spectrum,
19400:17:46,670 --> 00:17:47,410for example,
19500:17:47,410 --> 00:17:51,270that really love a visually simple space.
19600:17:51,730 --> 00:17:57,670Other people really love to have objects in certain places or facing a certain way.
19700:17:58,040 --> 00:18:05,450So having a shift in the environment can impact this sense of grounded Nous.
19800:18:08,440 --> 00:18:27,790Women may report feeling like they have less control over the environment and therefore they may need to rely more on other strategies to find that peaceful place in their own spirit preparing for baby often involves more social contact.
19900:18:27,800 --> 00:18:35,890And so people may come up to her and want to touch her or talk to her about their own birth experiences.
20000:18:35,900 --> 00:18:39,010They might ask questions about her pregnancy.
20100:18:39,020 --> 00:18:54,380So there can be less personal space in a social context and this can feel demanding and draining to the autistic woman who's already really managing a lot of physical and environmental changes.
20200:18:55,040 --> 00:19:00,460So this woman may want to decide ahead of time how much social context she wants,
20300:19:01,040 --> 00:19:03,070Does she want a baby shower?
20400:19:03,080 --> 00:19:07,670Does she want family to visit and stay over when the baby's born?
20500:19:09,040 --> 00:19:29,000She may want to practice comments that she can make when strangers want to ask her about the pregnancy in order to just kind of create a safe space for herself without feeling like people are kind of coming into her space more often than she can really handle and and balance.
20600:19:31,840 --> 00:19:42,240Some women on the spectrum realize that they have really high standards for themselves and they don't want to take risks or fail or make mistakes.
20700:19:42,460 --> 00:19:47,440Inattention to detail may be very important to them and getting this right.
20800:19:47,450 --> 00:19:48,730And in that sense,
20900:19:48,730 --> 00:20:01,770pregnancy and childbirth and parenting may feel really daunting because it's really difficult to get through that process without realizing that you don't have as much control as you wish you did.
21000:20:01,780 --> 00:20:05,390And it feels like a big risk in some ways,
21100:20:05,400 --> 00:20:08,030like I can influence the situation,
21200:20:08,030 --> 00:20:11,170but I don't have all the answers and nobody else does either.
21300:20:11,440 --> 00:20:14,400And that can kind of increase anxiety.
21400:20:14,840 --> 00:20:21,100And so having this self awareness if this is your um kind of rhythm,
21500:20:21,100 --> 00:20:28,860your internal rhythm that you try to stay on top of so many details and facts so you can get everything right.
21600:20:29,440 --> 00:20:41,760Um you may need to process how can you manage that during this really complex life change of pregnancy and becoming apparent.
21700:20:43,240 --> 00:20:48,970Some described feeling guilty when there were problems during their pregnancy.
21800:20:48,980 --> 00:20:57,960So if they went to the doctor in their blood pressure was high or their sugars were high or there was something that the doctor wanted to monitor more.
21900:20:58,840 --> 00:21:03,720They kind of felt like they had failed their doctor's appointment and you know,
22000:21:03,730 --> 00:21:19,270having this awareness of what the struggle is about and how to process that can really help um adjust to not having all the answers and not being able to get everything right and avoid risk.
22100:21:19,740 --> 00:21:31,310Many women describe to that pregnancy birth plans and breastfeeding and also parenting issues became their special interest and this isn't necessarily a bad thing at all.
22200:21:31,310 --> 00:21:33,060They become very informed,
22300:21:33,440 --> 00:21:41,260they have strong opinions and things they would like to choose in their parenting um in a really intentional way,
22400:21:41,270 --> 00:21:58,050but some also say they wish they had been more aware that this is what was happening so that when they hit obstacles or rough spots and they felt out of control um they could also focus on balance.
22500:21:58,440 --> 00:22:01,320Like I have some other interests.
22600:22:01,330 --> 00:22:05,280I have um ways of restoring myself,
22700:22:05,280 --> 00:22:10,780I have ways of grounding myself and this is a special interest that's okay,
22800:22:10,780 --> 00:22:17,580but I also want to seek balance and um and what I'm doing so that when these difficult,
22900:22:17,580 --> 00:22:19,050unexpected things happen,
23000:22:19,050 --> 00:22:21,360I can still hold the course and be okay.
23100:22:23,740 --> 00:22:28,260Also the increased chaos in the home after baby is born,
23200:22:28,270 --> 00:22:30,190that really needs no explanation.
23300:22:30,190 --> 00:22:33,670There are so many more demands on the parent.
23400:22:33,680 --> 00:22:35,790They have less rest time,
23500:22:35,810 --> 00:22:38,240there's a lot more sensory input.
23600:22:38,250 --> 00:22:46,090So really close attention to having strategies ahead of time and as you go along,
23700:22:46,090 --> 00:22:51,170adjusting strategies so that you know what you need,
23800:22:51,930 --> 00:23:11,820whether that's pressure or quiet time or um rest breaks and all of these things to really do this marathon of mothering rather than trying to sprint through doing everything perfectly all the time again,
23900:23:11,820 --> 00:23:38,770this is really a common experience for any woman who's gone through that season and it just maybe more so for the autistic female that they really want to figure out how to add balance and restorative kinds of activities in their life as we move on to menopause.
24000:23:39,140 --> 00:23:40,020Um,
24100:23:40,280 --> 00:23:41,210this again,
24200:23:41,220 --> 00:23:50,020is a season of a lot of hormonal shifting and some women report that they really did well,
24300:23:50,020 --> 00:23:52,880understanding their autistic characteristics,
24400:23:52,890 --> 00:23:58,360using their strengths to get ahead at work to get promoted to accomplish life goals.
24500:23:58,840 --> 00:24:05,270And they found compatible partners and they really got into this nice groove with um,
24600:24:05,270 --> 00:24:15,660a life that fit them and it fit their nervous system and all of a sudden menopause happens and there just was a lot of shift that they didn't expect.
24700:24:16,040 --> 00:24:22,020Um one woman described that she felt that her autism broke during menopause,
24800:24:22,020 --> 00:24:23,790that it kind of broke through,
24900:24:23,800 --> 00:24:29,860whereas she didn't really have to think about it a lot during other Seasons of Life,
25000:24:31,040 --> 00:24:34,420A quote from a woman in menopause said during menopause,
25100:24:34,420 --> 00:24:42,070I was on three meltdowns a week at times and my meltdowns were of the nature that people would call a basket case,
25200:24:42,640 --> 00:24:46,660I'd strip down to my underwear sometimes during a meltdown at work,
25300:24:47,440 --> 00:24:50,750so that feeling that my body,
25400:24:50,750 --> 00:24:51,820my nervous system,
25500:24:51,820 --> 00:24:57,730my my whole system is so overwhelmed that I need to just strip down.
25600:24:57,730 --> 00:25:00,780So I'm not getting so much sensory input,
25700:25:00,780 --> 00:25:10,050I'm not getting input that feels like it just takes me over the edge of feeling upset.
25800:25:10,060 --> 00:25:17,770Um and so I love these quotes because I feel like it really helps us here,
25900:25:17,770 --> 00:25:19,370the humanity of that,
26000:25:19,380 --> 00:25:33,450and we can probably all relate in certain areas or certain times of our life where we have felt um just overwhelmed by change or by things that hit us harder than we thought.
26100:25:33,940 --> 00:25:35,360Um So here again,
26200:25:35,360 --> 00:25:40,020we're talking about similarities with the report of many women during menopause,
26300:25:40,020 --> 00:25:50,670but it's really crossed with these common autistic characteristics that I feel more anxiety that I feel more sensory difficulty that I have more meltdowns.
26400:25:50,940 --> 00:25:55,290An autistic woman may feel that her attention to detail in getting things right,
26500:25:55,290 --> 00:25:58,050worked for her and so many aspects of life,
26600:25:58,440 --> 00:25:59,820but that during menopause,
26700:25:59,820 --> 00:26:04,400her hormone shifts have really led to this increased anxiety.
26800:26:04,410 --> 00:26:08,060This feeling of being overwhelmed by the demands of the environment.
26900:26:09,440 --> 00:26:16,500And she may feel like she's now getting stuck on detail rather than using that as a real gift.
27000:26:16,500 --> 00:26:19,280That helps her move forward with projects.
27100:26:19,280 --> 00:26:25,850So getting stuck to the point that it really makes it hard to move on with things to make decisions to feel calm.
27200:26:26,640 --> 00:26:30,700Women also report that changes in their physical form again,
27300:26:30,700 --> 00:26:43,070that our body really changes without our permission and there are weight changes and wrinkles and sometimes the ways that we use to exercise or have fun and do our leisure time.
27400:26:43,070 --> 00:26:46,900Sometimes we just can't physically engage in the same things.
27500:26:47,340 --> 00:26:54,650Sleep disturbance is common in menopause and of course for the autistic who already had sleep disturbance.
27600:26:54,650 --> 00:26:56,760That can be really challenging.
27700:26:57,220 --> 00:27:10,350And the emotional symptoms can all impact how this season feels the physical and hormonal changes impact many aspects of the autistic experience itself.
27800:27:10,740 --> 00:27:14,380And similar to other portions of our episodes,
27900:27:14,380 --> 00:27:18,720we need to look also at the life season changes as well.
28000:27:18,720 --> 00:27:20,780So life complexity,
28100:27:20,790 --> 00:27:22,670environmental changes.
28200:27:23,510 --> 00:27:26,490Some women are facing the need to downsize,
28300:27:26,490 --> 00:27:27,560for example,
28400:27:27,590 --> 00:27:29,140during menopause,
28500:27:29,140 --> 00:27:31,060maybe they're empty nesters,
28600:27:31,440 --> 00:27:34,670maybe they've gone through the loss of a partner,
28700:27:34,670 --> 00:27:47,300a divorce or the death of a spouse and they may be thinking about getting rid of their um possessions enough that they're downsizing into a new space.
28800:27:47,310 --> 00:27:49,500How will this new space feel?
28900:27:49,500 --> 00:27:50,960That can be really hard.
29000:27:51,640 --> 00:28:00,380Some women on the spectrum are going to be very attached to things in the environment in a way that feels stronger than a neuro typical may feel.
29100:28:00,410 --> 00:28:05,260And doing all this in the midst of physical changes can be really difficult.
29200:28:06,640 --> 00:28:15,460They may also be caring for ill or aging parents or have experienced loss in other aspects of their life.
29300:28:16,340 --> 00:28:17,420So as we said,
29400:28:17,420 --> 00:28:31,160these physical changes that occur in menopause also coincide with shifts and life experience and all of these things together can lead to some pretty big changes and how autism is experienced and expressed,
29500:28:31,740 --> 00:28:38,040A woman may feel like she needs to figure out how her system works again from the beginning.
29600:28:38,050 --> 00:28:40,780Like I used to have this figured out,
29700:28:40,790 --> 00:28:43,800I had come to understand myself and what I need,
29800:28:43,800 --> 00:28:48,450but now things have changed and I really have to figure this out again.
29900:28:50,940 --> 00:28:51,550Finally,
30000:28:51,550 --> 00:28:55,850it is important to recall that these are generalizations.
30100:28:55,850 --> 00:28:59,810So I I really want to emphasize that,
30200:28:59,810 --> 00:29:07,400I'm not saying that everything falls apart in certain seasons of hormonal shift,
30300:29:07,410 --> 00:29:09,930there's so much generalization,
30400:29:09,940 --> 00:29:22,370but I think that when the autistic woman goes through a season of life and the things that she thought she understood about herself really seemed to shift,
30500:29:22,380 --> 00:29:29,520I think it is helpful to know the context for that that has a context within the nervous system,
30600:29:29,530 --> 00:29:31,730within the autistic experience,
30700:29:31,730 --> 00:29:36,960within all these life changes and that in itself can be really helpful.
30800:29:37,540 --> 00:29:38,290And also,
30900:29:38,290 --> 00:29:43,070I think it allows us to be intentional about what do I need now?
31000:29:43,080 --> 00:29:44,730I didn't used to need this,
31100:29:44,730 --> 00:29:45,870but I need this now.
31200:29:45,870 --> 00:29:48,500And so I'm prepared to shift.
31300:29:48,510 --> 00:29:58,170I understand that it's not that I figure myself out for a lifetime and I need the same things all the time.
31400:29:58,540 --> 00:30:04,480It's that I figure things out for a season and I am prepared to shift when that changes.
31500:30:05,440 --> 00:30:14,170I hope this gives a nice overview of some of the physical and life season changes that impact autistic women.
31600:30:14,840 --> 00:30:17,870And in our final episode of the series,
31700:30:17,870 --> 00:30:19,130coming up next time,
31800:30:19,130 --> 00:30:23,050we're going to talk about shifts that have to do with aging.
31900:30:23,060 --> 00:30:25,430So we're going to talk about the aging,
32000:30:25,430 --> 00:30:26,890brain and body.
32100:30:26,900 --> 00:30:34,550We're going to talk about retirement and other aspects of just aging within the context of autism.
32200:30:34,840 --> 00:30:42,270I hope you join us for that next episode as we round out this series.
 
 
 

Shifting Autistic Characteristics Across The Lifespan: Adolescence

Join Dr. Regan for the second episode in this series about how autistic characteristics may shift across the lifespan. This episode focuses on the life season of adolescence. Stay tuned for the next episodes in the series to hear about hormonal shifts in women and autism in the aging adult (50's and beyond). 
Recognizing Dysregulation on the Autism Spectrum: Fight, Flight, Freeze
 
Dr. Regan's Resources
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
 
Read the Transcript:
 
100:00:03,340 --> 00:00:08,560Hello and welcome to this episode of Autism in the Adult podcast,200:00:08,940 --> 00:00:10,030I am your host,300:00:10,040 --> 00:00:11,550Dr Theresa Regan.400:00:11,560 --> 00:00:13,980I am a neuropsychologist.500:00:13,990 --> 00:00:23,750The director of an adult diagnostic autism clinic in central Illinois, and I'm the mother of a teen on the autism spectrum.600:00:25,140 --> 00:00:45,660We are starting the second episode of a four part series today and the series is about characteristics of autism that fluctuate or shift across the lifespan according to different seasons in life of the individual or changes in the environment.700:00:46,340 --> 00:00:53,960And our first episode in this series was that foundational information about shifting characteristics,800:00:53,970 --> 00:01:06,460shifts in how the individual experiences the characteristics and how those around them experience or are impacted by these autistic characteristics.900:01:07,840 --> 00:01:08,500Today,1000:01:08,500 --> 00:01:09,700in the second episode,1100:01:09,700 --> 00:01:26,360we're going to focus on the time period of adolescence in the lifespan and talk about why that can be such a huge shift and why there can be so many changes for the individual at that time.1200:01:27,540 --> 00:01:47,860one of the things we covered last time is that the changes in how we experience ourselves and express ourselves are often impacted by characteristics of the person that would include their physical development,1300:01:47,860 --> 00:01:49,540the development of the brain,1400:01:49,550 --> 00:01:56,220the biochemistry of the body and the brain also... things like the environment.1500:01:56,230 --> 00:01:59,770So what kinds of demands are in the environment,1600:01:59,770 --> 00:02:05,860what kind of assistance and structure are within that environment at the time.1700:02:07,340 --> 00:02:18,860Things that may shift may also include coping strategies that we've learned certain things we've learned to mask something or to cope with something and regulate ourselves better.1800:02:20,040 --> 00:02:24,360Let's start with the physical person during adolescence.1900:02:25,240 --> 00:02:37,980So one thing that happens of course is that the physical body has been developing and changing and during adolescence there's just a lot of acceleration in that we've got a lot more muscle mass,2000:02:37,980 --> 00:02:39,510you've got a lot of height,2100:02:39,520 --> 00:02:41,560the voice changes etcetera.2200:02:42,140 --> 00:02:48,110And the person at the end of that whole cycle has a different body in many respects.2300:02:48,740 --> 00:03:09,660And one of the things that clients on the spectrum have discussed with me is that for people who like consistency and predictability and who they are and what's happening sometimes this season of having a different body can really be frustrating and upsetting.2400:03:10,140 --> 00:03:13,100And I've had clients say,2500:03:13,110 --> 00:03:14,240you know,2600:03:14,250 --> 00:03:16,420this is not my body.2700:03:16,430 --> 00:03:20,920I really want my 10 year old body back because that was me.2800:03:20,930 --> 00:03:37,320It felt like my internal person was connected to that physical person and to have so many things change without my permission so that I'm a different height and weight and I just don't feel like this is my body anymore.2900:03:37,320 --> 00:03:39,430I just don't like it.3000:03:39,440 --> 00:03:44,090I want to go back in time and to have my original body,3100:03:44,090 --> 00:03:46,650the body that fits my personhood.3200:03:50,140 --> 00:03:55,270Sometimes this will come out where people say I as an adult,3300:03:55,280 --> 00:04:04,660focused a lot on staying at the weight of 118 because that's what my weight was when I stopped getting taller.3400:04:04,660 --> 00:04:07,190So when I graduated from high school,3500:04:07,190 --> 00:04:13,440I was 118 And I really can't tolerate being 120.3600:04:13,450 --> 00:04:16,770I can't tolerate being 100 and 10.3700:04:16,780 --> 00:04:34,080I need to be kind of that same foundational number that I associate with my body and I don't want it to change as you can predict by thinking about the lifespan of the individual.3800:04:34,740 --> 00:04:42,370This stress related to unexpected or unplanned changes in the body,3900:04:42,380 --> 00:04:45,460can really happen across lots of life seasons.4000:04:45,940 --> 00:04:49,750So adolescence is certainly a big one,4100:04:49,760 --> 00:04:51,790pregnancy is a big one,4200:04:51,800 --> 00:04:53,270aging is a big one.4400:04:54,060 --> 00:05:00,960we can all relate to wanting our younger body back and for the individual on the spectrum,4500:05:01,340 --> 00:05:14,160the angst of feeling disconnected with their personhood when their body changes may maybe even more acute that this really has happened without my permission and I do not like it.4600:05:15,440 --> 00:05:20,340The brain also has been doing a lot of development during this period of time.4700:05:20,350 --> 00:05:22,800And as we talked about in the first episode,4800:05:22,800 --> 00:05:30,110the brain itself does not stop developing as a part of the body until about 20, 21,4900:05:30,480 --> 00:05:33,010that early adulthood phase.5000:05:33,020 --> 00:05:36,310So the brain is not grown,5100:05:36,310 --> 00:05:44,260is not fully developed until the person is really out of high school and starting that young adulthood phase,5200:05:45,640 --> 00:05:51,760This development of the brain includes things like thinking at a different level,5300:05:51,770 --> 00:05:55,260challenging what you've always been told,5400:05:55,640 --> 00:06:01,250trying to graduate into more abstract ways of thinking conceptualized thinking.5500:06:01,740 --> 00:06:14,260So there's a lot of changes in the brain itself and the anatomy and the connections and that can impact how autism feels or is expressed during that time.5600:06:15,440 --> 00:06:19,070The chemistry of the body and the brain also shifts.5700:06:19,080 --> 00:06:21,300And so we talked about this before,5800:06:21,300 --> 00:06:31,990that hormones are meant to change the body and the brain and they do and the impact can really feel quite dramatic,5900:06:31,990 --> 00:06:33,850especially during adolescence,6000:06:34,440 --> 00:06:44,320where sometimes that's just this period of the perfect storm for the most centered individual.6100:06:44,330 --> 00:06:44,720You know,6200:06:44,730 --> 00:06:56,240every person probably has stories about adolescents when they were tearful or yelling or or stomping off,6300:06:56,250 --> 00:06:57,620jumping on their bike,6400:06:57,620 --> 00:07:03,530riding away whatever the drama of that period of time may have been for you,6500:07:03,540 --> 00:07:17,120you can relate to that feeling that this hormonal storm for someone that already has some dysregulation difficulty can also be pretty profound.6600:07:17,130 --> 00:07:21,260So it's even harder for me to stay centered.6700:07:21,270 --> 00:07:41,150It's even harder for me to keep my emotions in check or to um focus or get rid of that anxiety or sleep well that this regulation and you can go ahead and listen to the series on regulation that was not too long ago,6800:07:41,150 --> 00:07:44,640a four part series if you want to know more about that.6900:07:44,640 --> 00:07:53,760But the ability to stay centered and even it's just more difficult once those hormones kick in.7000:07:54,140 --> 00:07:58,660And even more so for the person who struggled to begin with,7100:07:59,440 --> 00:08:05,040it's also true that the body and the brain become sexualized during that time.7200:08:05,050 --> 00:08:17,850And so there are even these additional layers of emotion and physical response related to the sexualization of the body that the person has to navigate.7300:08:18,540 --> 00:08:19,290You know,7400:08:19,300 --> 00:08:20,960it's just not.7500:08:21,440 --> 00:08:25,960this is the time of life anymore when please, thank you, and sorry7600:08:25,960 --> 00:08:29,610was going to help you connect with people around you.7700:08:29,620 --> 00:08:39,860There's this really complicated social environment now and that also includes this sexualization of some relationships,7800:08:42,440 --> 00:08:44,470a psychological task.7900:08:44,470 --> 00:08:48,150So we're still talking about the individual at this moment,8000:08:48,150 --> 00:08:56,400but I want to stop and talk about not the physical piece but the psychological task of much of adolescence.8100:08:56,590 --> 00:09:05,180If you're familiar with Erik Erickson and his work with the tasks that we all have at different seasons of life.8200:09:05,190 --> 00:09:12,560He would say that the adolescent's job is to navigate this journey of identity.8300:09:12,940 --> 00:09:14,260Who am I?8400:09:14,640 --> 00:09:21,410Who am I as separate from my parents or from my family history and I'm my own person.8500:09:21,410 --> 00:09:21,930If so,8600:09:21,930 --> 00:09:26,360what does that look like and how can I connect with my tribe?8700:09:26,370 --> 00:09:27,310Where is my,8800:09:27,320 --> 00:09:28,160my people,8900:09:28,160 --> 00:09:42,090my tribe... peer relationships really are an important piece of the connection at that time where I switch from not so much having my best friend be mom or dad anymore or Joey down the street,9000:09:42,090 --> 00:09:49,260but I really switched toward a lot more peer companionship that I'm going to connect with...9100:09:49,640 --> 00:09:51,170A romantic peer...9200:09:51,170 --> 00:09:57,440I'm going to connect with peer groups at my school or in my neighborhood or at my part time job.9300:09:57,450 --> 00:10:01,220And these people may have different values than my parents had.9400:10:01,230 --> 00:10:05,960And I may explore all these different ways of being and thinking.9500:10:06,240 --> 00:10:10,860And my parents no longer seemed to have all the rules,9600:10:11,040 --> 00:10:11,380uh,9700:10:11,380 --> 00:10:13,240and all the keys to life.9800:10:13,250 --> 00:10:17,940And so this process of navigating life,9900:10:17,950 --> 00:10:20,640navigating the social environment,10000:10:20,650 --> 00:10:23,060navigating all of the um,10100:10:23,940 --> 00:10:32,360the reasoning and facts and cognitive pieces that a person might think throw as far as what do I believe?10200:10:32,740 --> 00:10:39,380Do I believe the same thing my parents do and where can I connect?10300:10:39,390 --> 00:10:43,460Where can I belong and find connection with other people?10400:10:45,540 --> 00:11:00,550What we see in the autism community is that there can be a lot of gender diversity that overlaps here and part of it can be this feeling that this is not my body.10500:11:00,940 --> 00:11:01,370Um,10600:11:01,380 --> 00:11:09,510I don't feel connected to the community of people who were born female or born male,10700:11:09,510 --> 00:11:11,060whatever the case may be.10800:11:11,070 --> 00:11:13,360I don't identify as that.10900:11:13,360 --> 00:11:14,730It's not my identity.11000:11:14,730 --> 00:11:16,310I don't feel connected to that.11100:11:16,310 --> 00:11:19,060I can't connect with the peer group in that way.11200:11:19,740 --> 00:11:23,510And in the case of this emerging sexuality as well,11300:11:23,510 --> 00:11:26,300that I'm looking for my identity,11400:11:26,300 --> 00:11:27,760I'm looking for my group.11500:11:28,140 --> 00:11:33,660And there's this gender diversity journey for some people on the spectrum.11600:11:34,440 --> 00:11:41,200So a lot of the research shows that although we would expect to see two um,11700:11:41,210 --> 00:11:45,430autism within any group throughout the world,11800:11:45,430 --> 00:11:47,980whether it's a um,11900:11:47,990 --> 00:12:02,160type of nation that we're looking at or whether it's a city or That about 2% of people in any particular area would be on the spectrum and within the gender diverse community that's higher.12000:12:02,640 --> 00:12:11,870So the research says about 5-8 % of the gender diverse community maybe on the spectrum,12100:12:11,870 --> 00:12:14,560I suspect it's somewhat higher than that.12200:12:15,140 --> 00:12:15,490Um,12300:12:15,490 --> 00:12:21,180but certainly there's that process of understanding the physical body,12400:12:21,180 --> 00:12:23,510understanding the peer group connection,12500:12:23,510 --> 00:12:36,190seeking that out and this who am I kind of journey in addition to changes in the person that can make,12600:12:36,200 --> 00:12:36,630um,12700:12:36,630 --> 00:12:40,060some added stress during a life season.12800:12:40,840 --> 00:12:51,020There are also a lot of changes to the environment of the individual who's in that adolescent period within autism.12900:12:51,020 --> 00:13:03,450What we see is that the autistic individual has more difficulty than their peers with things like independent daily activities and behavior.13000:13:04,040 --> 00:13:11,590What that means is that this person may have this brilliant sense of math or music or art.13100:13:11,600 --> 00:13:15,460Their head may be filled with facts and ideas.13200:13:15,470 --> 00:13:16,190Um,13300:13:16,200 --> 00:13:20,990but their ability to just kind of flow through the day and get things done.13400:13:20,990 --> 00:13:23,200Like I'm going to take my shower,13500:13:23,200 --> 00:13:26,550I'm going to throw my laundry in as a high school student,13600:13:26,550 --> 00:13:27,790I'm going to learn to drive,13700:13:27,790 --> 00:13:30,140I'm going to learn how to save money,13800:13:30,140 --> 00:13:31,530I'm going to learn to cook.13900:13:31,540 --> 00:13:31,960You know,14000:13:31,960 --> 00:13:34,280that kind of stuff is just harder.14100:13:34,280 --> 00:13:37,690Like I can name all these physics equations,14200:13:37,690 --> 00:13:44,400but I just can't catch up with my peers in this area of being independent and,14300:13:44,410 --> 00:13:59,840and this um kind of emerging into adulthood and this disconnect between the neuro typical peer and the individuals on the spectrum who's going through adolescent that gets bigger,14400:13:59,850 --> 00:14:00,660wider,14500:14:00,660 --> 00:14:03,780The gap gets wider with age.14600:14:03,790 --> 00:14:05,590So as you know,14700:14:05,590 --> 00:14:07,190a five year old,14800:14:07,200 --> 00:14:15,050there's some gap there where neuro typical peers are doing more independently typically than the autistic individual,14900:14:15,440 --> 00:14:16,600but you know,15000:14:16,600 --> 00:14:22,360there's not a whole lot of independent things that a five year old is being asked to do.15100:14:22,840 --> 00:14:26,560But when you get to middle school high school young adulthood,15200:14:26,570 --> 00:14:27,210whoa,15300:14:27,210 --> 00:14:33,460the independent demand just skyrockets and this gap becomes more and more visible.15400:14:33,840 --> 00:14:34,300Um,15500:14:34,300 --> 00:14:39,150and although the person may really be ahead with academic knowledge,15600:14:39,540 --> 00:14:44,670this person may be really feeling the gap of cash,15700:14:44,670 --> 00:14:47,680how do my peers get through life this way?15800:14:47,680 --> 00:14:49,170This is really overwhelming.15900:14:49,170 --> 00:14:50,740I have a lot of anxiety,16000:14:50,740 --> 00:14:54,250I feel like I don't know how to navigate all these things.16100:14:55,840 --> 00:15:14,950So the environment begins to demand more independence and the autistic individual going through this adolescent period starts to fall behind more and more with what's expected as far as independent daily behavior.16200:15:15,440 --> 00:15:24,460So can you approach a teacher and ask a question or talk to your teacher about,16300:15:24,840 --> 00:15:25,090hey,16400:15:25,090 --> 00:15:31,150I think the reason I am falling behind in math is that I don't understand this core concept.16500:15:31,160 --> 00:15:36,790Can you help me understand this or can they approach their peer and say,16600:15:36,790 --> 00:15:37,190hey,16700:15:37,190 --> 00:15:41,230do you want to go to the dance with me or hey,16800:15:41,240 --> 00:15:44,540I think we had kind of a rough interaction back there.16900:15:44,540 --> 00:15:46,360I really didn't mean to,17000:15:46,740 --> 00:15:47,540um,17100:15:47,550 --> 00:15:48,010you know,17200:15:48,010 --> 00:15:49,440criticize you,17300:15:49,450 --> 00:15:51,860I think it was a misunderstanding.17400:15:52,640 --> 00:16:05,850So this increased demand for communication from the individual that mom is going to be calling the school less and the students going to be doing the talking more often than before.17500:16:09,330 --> 00:16:20,250There are demands for independence in self care that all of this hygiene and grooming and eating independently and making sure you drink water and wear deodorant.17600:16:20,740 --> 00:16:27,820These things start to become the person's responsibility instead of the parents' responsibility.17700:16:27,820 --> 00:16:34,790And they're just can be a gap there where the expectation for independence is growing,17800:16:34,800 --> 00:16:38,950but the person is struggling to keep up.17900:16:40,240 --> 00:16:45,170There are increased demands with independence within what we call executive function.18000:16:45,200 --> 00:16:51,320So that ability to plan and organize and multitask time management,18100:16:51,320 --> 00:16:57,850These things that the person becomes more and more in charge of... these become harder and harder.18200:16:58,240 --> 00:17:14,450These are things that are always difficult on the spectrum to some extent and the gap again becomes larger as the demand becomes larger. chores are things that the person is supposed to start doing.18300:17:14,450 --> 00:17:14,850You know,18400:17:14,850 --> 00:17:23,770can I start to do my laundry or I'm in charge of um caring for this pet that the family has or doing the dishes.18500:17:24,540 --> 00:17:32,350Can I message my doctor through the electronic medical record and ask a question and then driving?18600:17:33,340 --> 00:17:33,700You know,18700:17:33,700 --> 00:17:39,160driving can be a milestone that feels overwhelming for the individual on the spectrum.18800:17:39,640 --> 00:17:47,830And I looked this past year at the clinic patients I've seen across several years.18900:17:47,840 --> 00:17:55,800I took ages 16 through 20 who individuals who had uh,19000:17:55,810 --> 00:17:57,860no intellectual disability.19100:17:58,440 --> 00:18:16,270And I saw that 80% of the clients I have seen in the clinic either did not do any driving by the age of 20 or they were significantly anxious about driving where I only drive to this one place and that's it.19200:18:17,340 --> 00:18:23,750So there can be this kind of overwhelming sense that things happen too fast on the road.19300:18:23,750 --> 00:18:25,070Things are overwhelming.19400:18:25,070 --> 00:18:27,650Or what if I make the wrong choice?19500:18:27,660 --> 00:18:28,750What if I crash?19600:18:28,750 --> 00:18:37,370What if I hurt someone in the midst of this increasing demand for independence?19700:18:37,380 --> 00:18:43,350There's also this reduction in structure or helpful support,19800:18:44,540 --> 00:18:46,470as we said before,19900:18:46,480 --> 00:18:51,940the person starts to be encouraged to be their own self advocate.20000:18:51,950 --> 00:18:54,690And I don't know about where you live,20100:18:54,700 --> 00:19:05,170but self advocacy is a word that's used more and more once you get into middle school and high school and college and even in the workplace,20200:19:05,840 --> 00:19:12,260it means that the individual is in charge of doing their own talking to people.20300:19:12,840 --> 00:19:16,760Self advocacy means that you can um,20400:19:16,770 --> 00:19:18,610look at your situation,20500:19:19,840 --> 00:19:30,760think about why it is that you're struggling and what you need to make a plan for improvement and approach someone in your situation and talk to them about it.20600:19:31,240 --> 00:19:33,800So I approach my guidance counselor,20700:19:33,800 --> 00:19:35,440I approach my professor,20800:19:35,450 --> 00:19:44,080I approach my boss and I initiate this discussion and we come to an agreement about what a good plan would be for.20900:19:44,090 --> 00:19:48,540Let's say for me to arrive on time for me to get my work in on time,21000:19:48,540 --> 00:19:49,270et cetera.21100:19:49,540 --> 00:19:54,680So parents start to play less of a role and the,21200:19:54,690 --> 00:20:05,070so the structure and the support starts to be pared back while the demand is increased socially,21300:20:05,070 --> 00:20:07,960things are more complex as well.21400:20:08,440 --> 00:20:19,010So gone are the days where running around and chasing each other and playing tag and hiding things is really a great social interaction.21500:20:20,240 --> 00:20:32,660I remember talking to some parents who were saying what great socialization their child had as a youngster and that when they would go to the park,21600:20:33,140 --> 00:20:37,030the child would play with other kids for example.21700:20:37,740 --> 00:20:54,870But when I asked what kind of play it typically was it was that the child would chase other kids and other kids would chase the child and they would laugh and play and fall and which is good for that age group.21800:20:54,870 --> 00:20:55,770That's fine.21900:20:56,340 --> 00:21:07,180But it's also this kind of instinctual physical play that puppy dogs can play and little kids know how to play that and it's a fun game,22000:21:07,200 --> 00:21:23,160but it doesn't really require the social skills and the social navigation that middle school relationships require right when you get from physical to play to this more relational connection,22100:21:23,180 --> 00:21:32,670that's where you can see some of the social things really begin to be much more difficult and the person really can't navigate that?22200:21:33,140 --> 00:21:35,770How do I start a relationship?22300:21:36,340 --> 00:21:38,580How do I maintain this relationship?22400:21:38,580 --> 00:21:42,520How do I understand this relationship?22500:21:42,520 --> 00:21:43,770What just happened?22600:21:44,740 --> 00:21:46,960Why did this relationship end?22700:21:47,540 --> 00:21:49,920Why did they misinterpret me?22800:21:49,920 --> 00:21:51,770Because that's not what I meant.22900:21:52,740 --> 00:22:07,160So there there becomes a lot more at stake and a lot more complexity when you're navigating not physical play and not play dates that your mom organized,23000:22:08,140 --> 00:22:13,770but you're really navigating your own emerging adult relationships.23100:22:14,840 --> 00:22:24,160Another thing that happens is that life becomes less predictable.23200:22:24,940 --> 00:22:27,590It's not your life in a box anymore.23300:22:27,620 --> 00:22:30,320You know when you're in first grade,23400:22:30,320 --> 00:22:35,500you know that next year you go to second grade and the next year you go to third grade,23500:22:35,500 --> 00:22:43,530fourth grade and life has this very predictable rhythm where you know where you go next.23600:22:43,540 --> 00:22:47,910Now you don't know what classes will be like or what your teacher will be like,23700:22:47,920 --> 00:22:52,240but you're going to the same school or you're switching schools,23800:22:52,250 --> 00:22:55,560but you have the structure ahead of you.23900:22:55,940 --> 00:23:00,430There's still something that propels you along and when you get to the next place,24000:23:00,430 --> 00:23:07,960there's a structure in place for you and someone will tell you where you're going to be next.24100:23:10,040 --> 00:23:12,260When you get to the end of high school,24200:23:12,640 --> 00:23:14,580at least in the United States?24300:23:14,590 --> 00:23:17,440What happens is that people start to say to you,24400:23:17,440 --> 00:23:19,060what are you going to do next?24500:23:20,640 --> 00:23:23,530What are you going to be when you quote grow up,24600:23:23,540 --> 00:23:24,860what do you want to be?24700:23:25,340 --> 00:23:39,850And they'll say things like you can be anything you want to be the whole world is your oyster and you start to see that your peers are no longer following the same path as every other peer,24800:23:39,850 --> 00:23:43,460that everyone is kind of making their own path.24900:23:44,240 --> 00:23:46,970And the person on the spectrum can feel like,25000:23:46,970 --> 00:23:47,450well,25100:23:48,140 --> 00:23:49,710what am I supposed to do?25200:23:49,710 --> 00:23:49,910What,25300:23:49,920 --> 00:23:52,060what is my life supposed to look like?25400:23:53,240 --> 00:23:54,600Where is the path?25500:23:54,610 --> 00:23:56,870Show me the path and I'll follow the path.25600:23:56,880 --> 00:24:00,200But to forge my own path,25700:24:00,200 --> 00:24:04,360may not actually feel that empowering or exciting.25800:24:04,940 --> 00:24:08,770I kind of like to know that I'm on the correct path.25900:24:08,780 --> 00:24:11,800I like to know how to meet people's expectations.26000:24:12,240 --> 00:24:14,910I like to know that I'm not getting lost.26100:24:15,180 --> 00:24:18,860I like to know that I'm not taking a risk that it's not unsafe.26200:24:20,140 --> 00:24:24,060So the future becomes more self propelled.26300:24:25,340 --> 00:24:35,680And this can also be a task of young adulthood that is daunting to the person with neurology that likes to know,26400:24:35,680 --> 00:24:36,060like,26500:24:36,840 --> 00:24:38,570did I get an A on that,26600:24:38,670 --> 00:24:39,000you know,26700:24:39,000 --> 00:24:40,230did I do it right.26800:24:40,370 --> 00:24:42,060Is this where I'm supposed to be?26900:24:43,140 --> 00:24:49,260So here we have the picture during adolescence that the internal self,27000:24:49,740 --> 00:24:52,400the psychological biochemical,27100:24:52,400 --> 00:24:56,050physical self and the external life,27200:24:56,540 --> 00:24:58,570the supportive structure,27300:24:58,630 --> 00:25:06,170the demands on the individual are creating this sense of just a lot less stability.27400:25:07,140 --> 00:25:07,550You know,27500:25:07,550 --> 00:25:09,730my internal self is less stable.27600:25:09,730 --> 00:25:11,680I feel all over the place.27700:25:11,690 --> 00:25:14,080I'm crying one minute I'm laughing.27800:25:14,080 --> 00:25:15,700One minute I'm throwing something.27900:25:15,700 --> 00:25:19,710One minute I have all these demands on me.28000:25:19,720 --> 00:25:21,920People seem to be figuring this out,28100:25:21,920 --> 00:25:23,820but I can't figure it out.28200:25:23,830 --> 00:25:25,020I can't sleep,28300:25:25,020 --> 00:25:26,050I'm anxious.28400:25:27,040 --> 00:25:35,560Um And there's all this stuff that goes along with this less stable season.28500:25:37,140 --> 00:25:38,950The person on the spectrum,28600:25:38,950 --> 00:25:40,820as we said earlier,28700:25:40,830 --> 00:25:43,400with relationship to regulation,28800:25:43,400 --> 00:25:48,450they're more likely to get dis regulated just from a neurological perspective.28900:25:48,940 --> 00:25:57,860And dis regulation looks like fight where it's any externalized expression of being unsent erred,29000:25:57,880 --> 00:25:59,410I'm crying,29100:25:59,410 --> 00:26:00,730I'm melting down.29200:26:00,730 --> 00:26:01,920I'm screaming,29300:26:01,920 --> 00:26:03,080I'm throwing something,29400:26:03,080 --> 00:26:06,460I'm shouting and arguing at you and I'm slamming doors.29500:26:07,440 --> 00:26:09,060You get flight.29600:26:09,740 --> 00:26:11,850I can't go to school anymore.29700:26:11,920 --> 00:26:12,970My stomach hurts.29800:26:12,970 --> 00:26:14,270I need to come home.29900:26:14,840 --> 00:26:16,830I'm staying in my room.30000:26:16,840 --> 00:26:18,810I'm not going to eat at the table.30100:26:18,820 --> 00:26:19,950I have homework to do.30200:26:19,950 --> 00:26:21,170I'm not coming out.30300:26:21,940 --> 00:26:33,360You get this social withdrawal and freeze is also part of this regulation that if you force me to I will sit sit here physically.30400:26:34,040 --> 00:26:36,640But psychologically I'm offline.30500:26:36,650 --> 00:26:39,400I can't process what's happening anymore.30600:26:39,410 --> 00:26:41,000I'm checked out.30700:26:41,010 --> 00:26:42,820I'm staring at the wall,30800:26:42,830 --> 00:26:46,470I might be having a seizure that's not electrical.30900:26:46,480 --> 00:27:01,360I might lose my memory for parts of the day and all of that is this dis regulation and the dis regulation of adolescents can be quite a bit more noticeable that there's this real crisis of regulation.31000:27:02,140 --> 00:27:09,760But also what I see in the clients that I serve is that the regulation difficulty can all of a sudden look different.31100:27:10,140 --> 00:27:12,770So that would not be unusual either.31200:27:13,140 --> 00:27:20,460So what I see is that sometimes if little kiddos were under reactive to their environment,31300:27:20,470 --> 00:27:24,360they were less reactive to what's going on around them,31400:27:25,740 --> 00:27:33,170they may look really um compliant and passive and go with the flow.31500:27:33,640 --> 00:27:39,060But what that really is is that they should have some response to what's going on in the environment.31600:27:39,060 --> 00:27:41,760But instead they just lack a response.31700:27:41,770 --> 00:27:44,130And if someone tells them to sit up,31800:27:44,130 --> 00:27:44,750they set up.31900:27:44,750 --> 00:27:47,330If someone tells them to go here or there,32000:27:47,330 --> 00:27:47,970they do it.32100:27:47,980 --> 00:27:52,170But they don't have a lot of reactivity to what's going on.32200:27:53,340 --> 00:27:54,440And adolescence.32300:27:54,440 --> 00:28:03,820This may be a person that flips into an over reactive state or an elevated reactive profile where oh my gosh,32400:28:03,820 --> 00:28:07,340the littlest thing happens and I react to it now.32500:28:07,350 --> 00:28:17,230So I have like this flip from passive to so elevated in my response or you can have vice versa.32600:28:17,240 --> 00:28:19,310Where as a little kid,32700:28:19,310 --> 00:28:25,910this person was melting down and rolling on the ground and biting people and now as an adolescent,32800:28:25,920 --> 00:28:33,030they can't get out of bed and they're sluggish and they don't eat and they don't have momentum for activities.32900:28:34,040 --> 00:28:38,790That could also be something that you see where there's this dis regulated state,33000:28:38,800 --> 00:28:40,410but it looks different,33100:28:40,420 --> 00:28:49,170but it's still dysregulation and it's still uh kind of falls within what we talked about in that past series.33200:28:52,540 --> 00:28:57,740Some people feel like with biochemical and hormonal changes,33300:28:57,740 --> 00:29:00,960that their anxiety really is elevated.33400:29:01,390 --> 00:29:09,260Sometimes there are self harm behaviors that may look like cutting or um hitting yourself,33500:29:09,270 --> 00:29:10,460biting yourself,33600:29:10,840 --> 00:29:12,850banging your head on the wall.33700:29:14,340 --> 00:29:18,450Sometimes there are elevated sensory concerns where,33800:29:19,040 --> 00:29:19,560you know,33900:29:19,560 --> 00:29:24,290this food never bothered me before or noise or whatever,34000:29:24,290 --> 00:29:29,110but all of a sudden I just really can't tolerate the sensory environment,34100:29:29,110 --> 00:29:38,050It's too much and that can be part of this physical and environmental season of dis regulation.34200:29:40,040 --> 00:29:57,310Now I do wanna um say that this I think is a really good summary of what I tend to see during adolescence as far as shifts in the qualities of autism and people I do want to say however,34300:29:57,310 --> 00:30:00,570that I work in a clinic.34400:30:00,580 --> 00:30:17,160So people come to me during adolescence when they are struggling and so I really don't get to see folks that have improved through adolescence and are doing better and not needing to come through.34500:30:17,640 --> 00:30:36,360So I'm fully aware of that piece as well and I have seen people in my community and in my personal life and in my friendships that have had a bit of a smoother course as well where the sensory issues have really come down by adolescents,34600:30:36,740 --> 00:30:39,490there's a bit better social connection.34700:30:39,500 --> 00:30:40,570Um,34800:30:40,580 --> 00:30:43,760executive functions not that much of a problem.34900:30:44,440 --> 00:30:58,770So you can certainly see this variety of individualized um kind of seasons and my purpose and talking about this isn't to say,35000:30:58,780 --> 00:30:59,880oh gosh,35100:30:59,880 --> 00:31:01,350when people get to adolescence,35200:31:01,350 --> 00:31:02,450that's going to be rough.35300:31:02,840 --> 00:31:03,180No,35400:31:03,180 --> 00:31:20,360it's just to point out that it is an individualized season of life and that just because autism is neurologic in its base doesn't mean that there there aren't shifting seasons and how that feels or how that looks.35500:31:20,840 --> 00:31:25,990And I think whenever that happens in your life or the life of those,35600:31:25,990 --> 00:31:26,860you love that,35700:31:27,340 --> 00:31:27,880um,35800:31:27,890 --> 00:31:28,330you know,35900:31:28,330 --> 00:31:31,090certainly it's likely to happen for you.36000:31:31,090 --> 00:31:34,180It may be adolescents for someone else.36100:31:34,190 --> 00:31:34,580Uh,36200:31:34,590 --> 00:31:34,950you know,36300:31:34,950 --> 00:31:40,550maybe pregnancy or menopause or even just life seasons that aren't physical,36400:31:40,550 --> 00:31:41,540that oh,36500:31:41,540 --> 00:31:47,360my parent dies and that's a season where my body is really responding differently.36600:31:49,240 --> 00:32:09,790I hope this information gives you a context for recognizing when you're going through those ups and downs of season and normalizing that these kinds of things can shift If you would like to review strategies for regulation.36700:32:09,800 --> 00:32:22,560I encourage you to go back to our regulation series not too long ago to look at strategies for centering and feeling better in your own skin.36800:32:23,640 --> 00:32:26,810And I'm looking forward to the third episode.36900:32:26,810 --> 00:32:32,270We're going to focus on next time and this is going to have to do with hormonal shifts.37000:32:32,740 --> 00:32:39,170A lot of that will talk about the experience of females on the spectrum,37100:32:39,170 --> 00:32:41,540just because they're tend to be,37200:32:41,540 --> 00:32:46,870of course more discreet hormonal shifts in the lives of women.37300:32:47,540 --> 00:32:50,560This will include menstrual cycles,37400:32:51,040 --> 00:32:51,980pregnancy,37500:32:51,980 --> 00:32:52,920breastfeeding,37600:32:52,920 --> 00:32:53,950menopause.37700:32:54,340 --> 00:32:54,840Um,37800:32:54,840 --> 00:33:03,360so some of these hormonal shifts will also impact males on the spectrum and some will be more specific to females.37900:33:03,740 --> 00:33:14,360But I really hope you can join us next time as we start rounding out this series on shifting characteristics in autism.
 

Shifting Autistic Characteristics Across The Lifespan: Foundational Knowledge

Join Dr. Regan for the first episode in her new series about how autistic characteristics may shift across the lifespan. This episode focuses on why this happens (i.e., changes in the individual and the environment). Stay tuned for the next episodes in the series to hear about changes during adolescence, hormonal shifts in women, and aging (50's and beyond). 
 
Dr. Regan's Resources
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
 
Read the Episode Transcript: 
100:00:05,840 --> 00:00:07,080Hi everyone,200:00:07,090 --> 00:00:14,860this is Dr Theresa Regan and thank you for joining me for a new episode of autism in the adult podcast.300:00:14,870 --> 00:00:29,450We are starting a new series today and it is going to focus on how the characteristics of autism may shift in their expression or in the experience of the individual across the lifespan.400:00:30,340 --> 00:00:35,610I'm happy to share my experiences about this as a neuropsychologist,500:00:36,040 --> 00:00:41,260a certified autism specialist and the mother of a teen on the spectrum.600:00:42,940 --> 00:00:59,850We are starting this new series and I plan to have four episodes that are outlining some of these shifts that we can see in what autism feels like and what it looks like across the lifespan of the individual.700:01:00,940 --> 00:01:14,180The reason that I want to focus on this topic is that it does feel confusing to many people as to why would there be shifts? if I'm seeing something that changes over time,800:01:14,180 --> 00:01:26,360doesn't it mean that something new has happened or that it's not related to an underlying kind of neurologic framework that is part of the foundation of the brain itself.900:01:27,740 --> 00:01:28,970And indeed,1000:01:28,980 --> 00:01:30,890in the diagnostic manual,1100:01:30,890 --> 00:02:01,470many clinicians really focused on an important part of the criteria which is that the characteristics have to be present across multiple contexts in order to make this diagnosis -- and that is to safeguard from having a diagnosis established when in fact there's just something about the environment or the combination of the environment and the person that triggers similar characteristics.1200:02:01,470 --> 00:02:01,980So,1300:02:01,990 --> 00:02:03,710for example,1400:02:03,720 --> 00:02:12,950if somebody is really triggered and has flashbacks in a certain environment related to trauma,1500:02:13,740 --> 00:02:21,760we don't want to call that autism and perhaps we can tell the difference because in other setting,1600:02:21,770 --> 00:02:29,360they really seem to feel centered and to interact easily with others and not show the same pattern.1700:02:29,370 --> 00:02:38,350Or perhaps someone just has a real struggle connecting with a certain person because of past experiences.1800:02:38,350 --> 00:02:46,160But their ability to connect across environments with a large range of people is where we would expect it to be.1900:02:47,740 --> 00:02:48,430So,2000:02:48,430 --> 00:02:50,470there is a reason that,2100:02:50,480 --> 00:02:51,200you know,2200:02:51,210 --> 00:03:00,360the emphasis is placed on the fact that this is something seen across time and across context.2300:03:01,240 --> 00:03:03,030But at the same time,2400:03:03,340 --> 00:03:14,460I think we need to understand that there can be shifts in what the characteristics feel like and how they are expressed or what they look like to other people.2500:03:15,740 --> 00:03:21,990So this first episode is going to be about some foundational things,2600:03:22,000 --> 00:03:23,260how the brain works.2700:03:23,260 --> 00:03:28,360We're going to talk about the criteria and what the text actually says.2800:03:28,740 --> 00:03:36,660and we're going to talk about the trajectory of some of the changes that we can see within autism across the lifespan.2900:03:37,340 --> 00:03:49,400The second episode I'm planning will have to do with that age range of adolescence through young adulthood and changes that we may see during that period of time.3000:03:50,240 --> 00:04:01,960The third episode will have to do with hormonal shifts and the impact of shifting biochemistry on those autistic characteristics.3100:04:02,540 --> 00:04:15,550A good part of this discussion will center around autism and women as we'll be talking about various hormone shifts in adulthood that will include monthly cycles,3200:04:15,560 --> 00:04:16,670pregnancy,3300:04:16,680 --> 00:04:18,960breast feeding and menopause.3400:04:18,970 --> 00:04:24,970And the fourth and final episode will be about aging and autism.3500:04:24,970 --> 00:04:30,680What to expect or what we typically see across the aging period.3600:04:30,690 --> 00:04:36,970And this episode will focus on the fifth decade of life and onwards.3700:04:36,970 --> 00:04:38,390So fifties,3800:04:38,390 --> 00:04:38,890sixties,3900:04:38,890 --> 00:04:39,430seventies,4000:04:39,430 --> 00:04:40,130etcetera.4100:04:40,140 --> 00:04:50,950We're going to capture what the aging brain may shift as far as how those characteristics are experienced.4200:04:53,740 --> 00:05:07,860So today you are joining me just for some foundational discussion about ... why would we expect there to be shifts in how this neurologic behavioral pattern is expressed.4300:05:09,340 --> 00:05:10,180Well,4400:05:10,190 --> 00:05:14,110let's talk about the brain itself.4500:05:14,170 --> 00:05:17,560So as we've talked about in other episodes,4600:05:17,940 --> 00:05:26,440autism is a developmental neurologic condition reflecting how the brain has developed,4700:05:26,440 --> 00:05:33,730how the wiring has been established in this early developmental period.4800:05:33,740 --> 00:05:47,680And the manual does note that the characteristics must be present in the developmental period and that they need to be present across multiple contexts.4900:05:47,690 --> 00:05:48,290Now,5000:05:48,300 --> 00:05:50,560as the brain develops,5100:05:50,560 --> 00:05:52,990because it is a physical part of the body,5200:05:53,000 --> 00:06:01,240you can see shifts in what those characteristics look like over time because the brain is evolving,5300:06:01,240 --> 00:06:08,870it's developing.  And the brain does not stop physically developing until about age 20, 21...5400:06:09,540 --> 00:06:11,910That early adult period.5500:06:11,920 --> 00:06:17,160And so there's a lot of development that's going on all through childhood,5600:06:17,170 --> 00:06:24,400really getting up into the 20's and in the context of the brain,5700:06:24,400 --> 00:06:26,620as a part of the body developing.5800:06:26,630 --> 00:06:35,060You can certainly see shifts in what that feels like and what it looks like in varying individuals.5900:06:35,740 --> 00:06:44,150One person may feel like some of the characteristics that were challenging to them and childhood have calmed down.6000:06:44,150 --> 00:06:46,760Some may feel that they,6100:06:46,770 --> 00:06:47,080you know,6200:06:47,080 --> 00:06:55,790hit a point where things are quite a bit harder for a season and we'll talk about why that might be in these later episodes.6300:06:56,040 --> 00:06:59,270But the development of physical development,6400:06:59,370 --> 00:07:09,750the foundation of the neurology occurring over that long period of time is one of the reasons that the experience and expression can shift.6500:07:11,540 --> 00:07:12,540In addition,6600:07:12,540 --> 00:07:17,840there are changes in the biochemistry of the body,6700:07:17,850 --> 00:07:19,390including hormones.6800:07:19,390 --> 00:07:31,590And we alluded to that when I talked about the episode and hormones are supposed to change body organs and this includes the brain,6900:07:31,600 --> 00:07:33,300so different parts of the body,7000:07:33,300 --> 00:07:34,580the muscles,7100:07:34,590 --> 00:07:35,960the vocal cords,7200:07:35,970 --> 00:07:41,560lots of different parts are impacted by the release of hormones.7300:07:41,840 --> 00:07:44,750And the brain is changed as well.7400:07:45,140 --> 00:07:47,880That's part of the function of hormones.7500:07:48,540 --> 00:08:06,260Adolescence is well known for this period of time where people don't act like themselves in some ways. they seem very intense or just that that that period of time as the brain is kind of bathed in these chemicals,7600:08:06,440 --> 00:08:20,550there can be a shift in emotional expression and behavioral patterns and connecting with others and that is true for every human and certainly for those on the spectrum as well.7700:08:20,550 --> 00:08:23,950So the changes in the biochemistry,7800:08:24,440 --> 00:08:33,350this also can occur during hormonal shifts as we stated within the female autistic individual over her lifespan.7900:08:34,240 --> 00:08:38,460And with aging there will be some biochemical shifts as well.8000:08:40,940 --> 00:08:46,060It's not only the physical part that changes in our life.8100:08:46,060 --> 00:08:50,750So the anatomy and the developmental piece... the biochemistry,8200:08:50,750 --> 00:08:53,860but also our environment changes.8300:08:54,340 --> 00:09:00,480And this happens both with the environmental demand on us.8400:09:00,490 --> 00:09:03,330How much are we being requested to do?8500:09:03,340 --> 00:09:05,220How complicated is it?8600:09:05,220 --> 00:09:07,250How fast is it coming at us?8700:09:07,260 --> 00:09:09,780How much is changing at one time?8800:09:09,780 --> 00:09:11,560How much do I have to adapt to?8900:09:12,440 --> 00:09:13,450But also,9000:09:13,450 --> 00:09:17,810the amount of support we're offered in the environment will also shift.9100:09:17,840 --> 00:09:21,960And sometimes that has to do with just life circumstances.9200:09:21,980 --> 00:09:23,320For example,9300:09:23,320 --> 00:09:34,760someone in our life is no longer there or we change jobs and the demands on us are different or we had no children now all of a sudden we have twins.9400:09:35,740 --> 00:09:39,120But also it will change with life seasons.9500:09:39,220 --> 00:10:01,050So as a youngster becomes older and they're not in kindergarten anymore - they're in the third grade and then they're in the sixth grade and you start to get into this season of life where more and more independence is asked of you and less environmental support is given9600:10:01,060 --> 00:10:18,140while the demands continue to increase. When we see something that has changed that the person's experience of the autism characteristics feels different or the person's expression feels different to others,9700:10:18,150 --> 00:10:23,120we can think about what has been shifting in this person's life.9800:10:23,130 --> 00:10:27,560Is there a new stressor, is more being demanded of them,9900:10:27,840 --> 00:10:29,320Have things changed?10000:10:29,320 --> 00:10:31,490Have supports has been removed.10100:10:31,500 --> 00:10:32,550For example,10200:10:32,550 --> 00:10:38,960the individual that's used to working the same job for 30 years and retires.10300:10:39,340 --> 00:10:39,780Boy.10400:10:39,780 --> 00:10:46,360That's a huge shift in the environmental structure that is offered to this person.10500:10:46,740 --> 00:10:50,620Now there is a reduction in demand in some ways,10600:10:50,630 --> 00:10:58,640although the demand was so repetitious by that time it was something the person was so used to.10700:10:58,650 --> 00:11:03,730And now all of a sudden the demand actually is to structure yourself,10800:11:03,740 --> 00:11:06,260fill your life with meaningful activities.10900:11:06,640 --> 00:11:15,120And that kind of shift in the environment and shift in life season can bring about changes.11000:11:15,130 --> 00:11:16,380And people around11100:11:16,380 --> 00:11:20,180the individual may comment that they seem different.11200:11:20,190 --> 00:11:22,440Things aren't quite going as before.11300:11:22,450 --> 00:11:29,950Or the person themselves may feel that they just can't get in the same rhythm they were and they just feel different.11400:11:32,940 --> 00:11:53,660Let's talk for a moment about why someone who is versed in autism may argue that changes in the characteristics of autism should not be seen or that we wouldn't expect it to or that shifts are evidence that it's really not a neurologic pattern.11500:11:54,940 --> 00:12:02,020So as I said in the diagnostic manual and this manual that I'm referring to is the D.11600:12:02,020 --> 00:12:02,300S.11700:12:02,300 --> 00:12:02,580M.11800:12:02,580 --> 00:12:10,750Five which is the diagnostic manual that clinicians use in the United States.11900:12:10,750 --> 00:12:20,750So it's called the diagnostic and statistical manual 5th edition. therapists and psychologists and clinicians use this.12000:12:21,130 --> 00:12:27,450Sometimes people in other contexts or other geographic areas use the i.12100:12:27,450 --> 00:12:27,640c.12200:12:27,640 --> 00:12:27,800d.12300:12:27,800 --> 00:12:28,45010.12400:12:28,740 --> 00:12:40,260But in general I'm going to review Information from the DSM5 and I'm going to give some page numbers to reference.12500:12:41,140 --> 00:13:07,760So when you look up the criteria for autism on the internet you will get the diagnostic criteria and you will see the sentences there about how the characteristics are supposed to be present in the developmental period and are also supposed to be seen across a variety of contexts so that we have this implication of consistency to some extent.12600:13:09,160 --> 00:13:18,860This does make sense because the neurologic framework would not be expected to just come and go from day to day.12700:13:18,860 --> 00:13:22,460That's kind of the anatomical framework.12800:13:23,240 --> 00:13:23,960However,12900:13:23,960 --> 00:13:36,850if individuals don't read from the actual manual -- because there are I don't know eight or 10 additional pages that explain what the criteria mean--13000:13:37,240 --> 00:13:56,260This person may be under the assumption that if there's any variation or if people didn't notice some of the characteristics in early life and they seem to emerge in middle school that that negates the possible diagnosis.13100:13:57,940 --> 00:14:07,470So if we read on page 50 and page 53 what the manual says is the symptoms are present from early childhood.13200:14:07,470 --> 00:14:26,490"However the stage at which functional impairment becomes obvious (and I'll just interject here that what they're referring to is the stage at which someone may uh seem to be struggling with some of these things that this is causing them to stress.13300:14:26,500 --> 00:14:38,860It's causing difficulty with age appropriate life skills or they're having to use so much more energy to do something that their peers are doing)13400:14:40,040 --> 00:14:40,430So.13500:14:40,430 --> 00:14:40,750Again,13600:14:40,750 --> 00:14:50,330the stage at which functional impairment becomes obvious will vary according to characteristics of the individual.13700:14:50,400 --> 00:14:56,000So this is what we referred to earlier as far as the person,13800:14:56,000 --> 00:14:57,340the physical person,13900:14:57,340 --> 00:15:04,960the biochemical person and the characteristics of the individual and his or her environment.14000:15:05,740 --> 00:15:13,660So we tapped into this when we talked about the assistance in the environment and the demand of the environment.14100:15:15,210 --> 00:15:16,200It continues.14200:15:16,200 --> 00:15:28,400The symptoms may not be fully manifest until social demands exceed limited capacities or maybe masked by learned strategies.14300:15:28,940 --> 00:15:29,270So,14400:15:29,270 --> 00:15:46,570what this is saying is that it very well can be that little kiddos get along pretty well because not much reciprocity is demanded of them in their early life or in the context in which they are at.14500:15:46,580 --> 00:15:59,950And then the difficulties that were there all along may become manifest when the demands exceed their limited capacity.14600:16:01,940 --> 00:16:09,120Intervention compensation and supports may mask difficulties in at least some context.14700:16:09,130 --> 00:16:10,030So,14800:16:10,030 --> 00:16:10,510again,14900:16:10,510 --> 00:16:28,820we see that the person's way of coping with things or hiding things or masking things can bring about some variation in context and can hide some of the difficulties that have been there all along Again.15000:16:28,820 --> 00:16:30,510On page 53,15100:16:30,520 --> 00:16:42,130the manual states the verbal and nonverbal deficits in social communication have varying manifestations depending on the individual's age,15200:16:42,140 --> 00:16:44,970intellectual level and language ability,15300:16:45,000 --> 00:16:50,470as well as other factors such as treatment history and current supports.15400:16:52,740 --> 00:16:54,490On page 56,15500:16:54,500 --> 00:16:58,970the characteristics are also impacted by compensation strategies.15600:16:58,980 --> 00:17:07,430"for some, social challenges are still a struggle in novel or unsupported situations."15800:17:08,790 --> 00:17:09,870although you know,15900:17:09,870 --> 00:17:13,930the person may cope better with them in other situations.16000:17:16,340 --> 00:17:19,770The manual also states that when you're doing an assessment,16100:17:19,780 --> 00:17:23,860it's important to get multiple sources of information.16200:17:23,870 --> 00:17:34,620So diagnosis should not only be based on one source of information like the school or or one on one observations,16300:17:34,630 --> 00:17:47,210but it should put together this whole constellation of observations across context because the person's behavior and interactions will not look the same16400:17:47,210 --> 00:17:50,460from everyone's perspective or in every context.16500:17:54,740 --> 00:17:55,460Additionally,16600:17:55,460 --> 00:17:56,810on page 51,16700:17:56,820 --> 00:18:04,670it states that quote severity may vary by context and fluctuate over time.16800:18:05,910 --> 00:18:06,470Therefore,16900:18:06,470 --> 00:18:07,960as we can see,17000:18:08,790 --> 00:18:22,010the manual is trying to emphasize a balance between understanding that there is a neurologic foundation in the autistic profile, that is,17100:18:22,080 --> 00:18:28,490a kind of base, but that different things will change this base.17200:18:29,240 --> 00:18:31,130The brain develops,17300:18:31,140 --> 00:18:33,850the brain is shifted by hormones,17400:18:33,850 --> 00:18:35,450the brain ages,17500:18:36,440 --> 00:18:38,860chemistry changes etcetera.17600:18:39,940 --> 00:18:42,140Also the environment changes,17700:18:42,140 --> 00:18:43,640the demands change.17800:18:43,650 --> 00:18:43,860Oh,17900:18:43,860 --> 00:18:46,300I've never been asked to do this before.18000:18:46,320 --> 00:18:53,250Now I'm being asked to do it frequently and the supports that I used to have just aren't even there.18100:18:53,280 --> 00:19:05,140So now there's this manifesting of different things or perhaps someone really was just feeling really centered doing well at work,18200:19:05,150 --> 00:19:07,020had nice relationships.18300:19:07,540 --> 00:19:24,550Uh But then you know something happened where there was a trauma or the death of a loved one and the things that felt really balanced began to feel unbalanced and really difficult to manage during that season.18400:19:26,840 --> 00:19:31,910Even if people are using the severity levels that the D.18500:19:31,910 --> 00:19:32,150S.18600:19:32,150 --> 00:19:34,960M suggests can be used.18700:19:35,840 --> 00:19:46,860The manual emphasizes that those levels can change over time and that is because of what we've discussed that things change.18800:19:47,540 --> 00:19:49,250The person changes,18900:19:49,260 --> 00:19:51,010the environment changes,19000:19:51,020 --> 00:20:03,160seasons change and it is expected that there will be some shifts and how the person is experiencing.19100:20:03,170 --> 00:20:28,990You know the level of anxiety or sleep disturbance or the ability to connect with others or the amount of resilience they have or the sensory processing um how flexible they feel and how other people experience those that other people say wow I'm really noticing the shift in our relationship now and it's confusing to me.19200:20:29,000 --> 00:20:37,560I see that there's a difference in how this person tolerates some of the relational ambiguity that we're having.19300:20:38,240 --> 00:20:53,060What we expect is that there will be this neurologic base that is somewhat steady and there will also be shifts based on seasons of life.19400:20:55,030 --> 00:20:57,730This helps us when we see these shifts,19500:20:57,880 --> 00:21:04,740it helps us to feel less confused and to understand the context that yes,19600:21:04,740 --> 00:21:05,770this happens.19700:21:06,140 --> 00:21:09,350Um and this may be why,19800:21:09,360 --> 00:21:09,700you know,19900:21:09,700 --> 00:21:13,450there have been these shifts in physical function,20000:21:13,450 --> 00:21:18,240there have been these shifts in environmental demand and support,20100:21:18,250 --> 00:21:27,350and now we can try to focus on understanding and coming alongside this individual to feel more centered.20200:21:32,040 --> 00:21:34,700This is our foundational episode.20300:21:34,710 --> 00:21:36,610And as I said,20400:21:36,610 --> 00:21:49,790we'll be reviewing seasons of the lifespan in our next three episodes and this first one coming up will be that emergence from young childhood into this.20500:21:49,800 --> 00:21:50,240You know,20600:21:50,240 --> 00:21:52,610adolescence and young adulthood period.20700:21:52,620 --> 00:21:57,750A lot of shifting goes on during that time and I can't wait to talk to you guys about it.20800:21:57,760 --> 00:21:59,270Please join me next time.
 
 
 
 

Talking About Autism: Characteristics in Others

Join Dr. Regan for the final episode of the series "Talking About Autism." This episode focuses on how talk to others when you see autistic characteristics in them. 
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Dr. Regan's Resources
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website
Resources for Clinicians
 
Read the transcript:
00:00:02,540 --> 00:00:06,380Hello everyone.
300:00:06,390 --> 00:00:13,200This is Dr Theresa Regan and you are joining me for this episode of autism in the adult podcast.
400:00:13,210 --> 00:00:15,620I am a neuropsychologist,
500:00:15,630 --> 00:00:23,730the parent of a teen on the spectrum and I'm the director of a diagnostic autism clinic for adolescents,
600:00:23,730 --> 00:00:26,960adults and aging adults in central Illinois.
700:00:27,540 --> 00:00:33,220And we are in the third uh segment here of the series that we're calling,
800:00:33,220 --> 00:00:34,890talking about autism,
900:00:34,900 --> 00:00:43,350which has been a listener requested series and a really great topic to review together and discuss.
1000:00:43,930 --> 00:00:54,260The first episode was about personal journeys towards getting a diagnosis or receiving a diagnosis and how to communicate with others about that.
1100:00:54,740 --> 00:01:01,570The second episode was about navigating emotional atmospheres when talking about autism.
1200:01:01,570 --> 00:01:02,950For some reason,
1300:01:02,970 --> 00:01:21,150the topic can be very emotionally charged and it can be unexpected at times and intense and thinking about how to navigate all those emotions can help if you're wanting to talk more about the topic with other people.
1400:01:22,040 --> 00:01:30,930Uh and this episode is about talking about autism to others when its characteristics in them that you identify,
1500:01:30,930 --> 00:01:41,060that you wonder if they might be on the spectrum and you're wanting to bring up the topic and just kind of um suggest that to them or see if they've thought about it.
1600:01:43,640 --> 00:01:55,060What I'm going to do first is a segment where I'm going to lay the foundation for how I explain autism to other people.
1700:01:55,540 --> 00:02:02,610I think this Foundation may at times be something that you need a way of verbalizing.
1800:02:02,610 --> 00:02:04,960If you're going to bring up the topic to others.
1900:02:05,250 --> 00:02:06,650This may help some of you.
2000:02:06,650 --> 00:02:09,100It may be old hat for some of you.
2100:02:09,540 --> 00:02:16,530Um But it'll be after we review that foundational kind of information that I talk about.
2200:02:16,530 --> 00:02:24,360Some ways to approach people and ways to talk about the topic or introduced the topic.
2300:02:26,640 --> 00:02:30,060So when we talk about autism,
2400:02:30,640 --> 00:02:53,660you may be talking to someone who has less knowledge than you do about what it is and at some point in the conversation you may be wanting to clarify what it is so that they can consider the information um in a really accurate way.
2500:02:55,840 --> 00:03:03,850What autism is is a neuro behavioral developmental condition that's neurologic.
2600:03:04,340 --> 00:03:09,800Uh So what it means is that the brain,
2700:03:09,810 --> 00:03:17,060because it's in charge of our thinking skills are academic skills are motor coordination,
2800:03:17,070 --> 00:03:18,980our emotions,
2900:03:18,980 --> 00:03:21,110our personality structure,
3000:03:21,120 --> 00:03:22,950our behavioral patterns.
3100:03:23,340 --> 00:03:40,450Um Sometimes the brain has kind of an atypical wiring from birth that whereas one individual may be born with some atypical bone structure or an atypical heart valve.
3200:03:40,460 --> 00:03:48,150Um Others are born with an unusual pattern of neurological wiring and that's what this is.
3300:03:48,430 --> 00:03:57,710So it's a physical state and research at this point shows us that it's largely driven by the genetic code,
3400:03:57,710 --> 00:04:20,750which is not surprising in the sense that we now know it's not the result of poor parenting or um other things that decades ago people were talking about but that it's really um kind of this condition of how the code was revealed during development and how the body developed.
3500:04:22,440 --> 00:04:27,360Sometimes for the individuals with developmental differences,
3600:04:27,370 --> 00:04:32,280They have a few um atypical areas in their body.
3700:04:32,280 --> 00:04:37,530So one person might have a heart valve problem from birth.
3800:04:37,530 --> 00:04:41,610That's a congenital difference and may have autism.
3900:04:41,610 --> 00:04:54,890And in fact That is um true in the research that I think it's about 30% or so of kids with certain cardiac differences that are congenital,
4000:04:54,890 --> 00:04:58,500they're born with them are also on the autism spectrum.
4100:04:58,500 --> 00:05:11,660And the reason for that is just that this is a reflection of biology of how the person developed and came together before birth,
4200:05:13,190 --> 00:05:31,090neuro behavioral refers to the fact that the diagnosis only describes behavioral patterns and in that as a neuropsychologist behavior is interpreted perhaps more widely than than you might interpret it.
4300:05:31,090 --> 00:05:31,740So for me,
4400:05:31,740 --> 00:05:44,530behavior has to do with communication and the establishment of relationships and repetitious behavioral patterns and um reacting to the sensory environment.
4500:05:44,530 --> 00:05:48,260So all of those are neuro behavioral characteristics.
4600:05:49,640 --> 00:06:04,170One thing to understand that might make it easier to think about autism or to explain it to other people is that the brain is an organ that is organized.
4700:06:04,180 --> 00:06:11,330It's really organized by pattern and pathway and nuclei and location where,
4800:06:11,340 --> 00:06:11,780you know,
4900:06:11,780 --> 00:06:22,620you probably know that there are some things that the left side of the brain typically does and some things that the right side is in charge of and the same for the inside versus the outside.
5000:06:22,630 --> 00:06:41,660And there are some general patterns about how the brain is organized when a neurologist does a checkup for someone in the emergency room because they've had vision changes and they have weakness on part of their body.
5100:06:41,670 --> 00:06:46,190They will check all these kinds of things that the brain is in charge of.
5200:06:46,190 --> 00:06:48,500So they'll check the person's vision,
5300:06:48,500 --> 00:06:50,750they'll check the person's speech,
5400:06:50,950 --> 00:06:53,630their ability to find words that they want to say.
5500:06:53,630 --> 00:06:56,750They'll check the person's comprehension of speech.
5600:06:57,140 --> 00:06:59,130They'll watch the person walk,
5700:06:59,140 --> 00:07:01,680they'll check their strength and their reflexes.
5800:07:01,750 --> 00:07:11,060And the reason they do this is that it tells them something about what part of the brain might be struggling.
5900:07:11,440 --> 00:07:13,920Because we know for example,
6000:07:14,040 --> 00:07:17,540that in general the right side of the body is,
6100:07:17,550 --> 00:07:21,780is controlled uh in strength,
6200:07:21,790 --> 00:07:23,410in that muscle strength,
6300:07:23,420 --> 00:07:26,010by the left side of the brain.
6400:07:26,020 --> 00:07:31,380And so if the person's presenting with right sided weakness,
6500:07:31,410 --> 00:07:34,150there may be a left side of the brain issue,
6600:07:34,160 --> 00:07:39,860But it gives you this sense that when we see clinical signs,
6700:07:40,440 --> 00:07:46,080we can make conclusions about pathways and locations in the brain.
6800:07:47,330 --> 00:07:52,420The same is true when we look at neuro behavioral patterns.
6900:07:53,110 --> 00:08:00,700The reason I bring this up is that I think it gives meaning and cohesion to this concept of autism.
7000:08:00,700 --> 00:08:22,910That the reason these characteristics hang together in the same person is that they tend to hang together in certain pathways and connections in the brain and that to me gives this a kind of meaningful picture that oh there,
7100:08:22,920 --> 00:08:36,160there are particular freeways in the brain and stops along the way that hang out together anatomically and the expression of differences in that wiring hangs together behaviorally.
7200:08:37,340 --> 00:08:41,450So that concept of the anatomy,
7300:08:41,840 --> 00:08:49,600the wiring being reflected in the cohesion of these behavioral differences.
7400:08:49,610 --> 00:08:50,220To me,
7500:08:50,220 --> 00:08:51,560that adds meaning to it.
7600:08:53,440 --> 00:09:19,030The next part of neurology that I want to explain is that we realized as a scientific community that these kind of characteristics hang together In about 2% of the population and that they're really important to pay attention to like these have implications and there are things we should understand.
7700:09:19,040 --> 00:09:30,000So let's have a name for this so that we can communicate in an efficient way about these pathways that seem to be wired differently.
7800:09:30,640 --> 00:09:47,350So we currently use the words autism spectrum and that helps us communicate and study something and learn about it and kind of take a snapshot of someone's needs or how they might process the world.
7900:09:49,630 --> 00:09:55,850Now this gets to be complex because we then have to say,
8000:09:55,850 --> 00:09:56,400well,
8100:09:56,400 --> 00:09:59,360when are we going to call it autism?
8200:10:00,240 --> 00:10:10,330Because there will be these um characteristics here and there um that are noticeable.
8300:10:10,340 --> 00:10:13,560But when do we actually give it that whole name?
8400:10:14,540 --> 00:10:20,560So this is the same process that the scientific community goes through with?
8500:10:20,570 --> 00:10:22,960When do we call something dyslexia?
8600:10:23,840 --> 00:10:26,450Or when do we call something dementia?
8700:10:27,140 --> 00:10:29,150When do we call this?
8800:10:29,160 --> 00:10:32,400Alzheimer's dementia versus Lewy body dementia.
8900:10:32,420 --> 00:10:39,380So there are these distinctions that we're trying to make that are difficult to say,
9000:10:39,390 --> 00:10:39,700oh,
9100:10:39,700 --> 00:10:39,900well,
9200:10:39,900 --> 00:10:46,620let's say there have to be two characteristics in this area and three characteristics in this area.
9300:10:46,630 --> 00:10:48,460And then we're gonna call it this.
9400:10:49,540 --> 00:10:50,160Well,
9500:10:50,540 --> 00:10:59,950that's helpful in the sense that we add definition to the concept of autism or dementia or whatever we're talking about.
9600:10:59,960 --> 00:11:03,580But it is somewhat arbitrary.
9700:11:03,580 --> 00:11:05,760Like at some point you have to,
9800:11:06,440 --> 00:11:08,580if you're going about this process,
9900:11:08,750 --> 00:11:11,750you have to make some type of demarcation.
10000:11:12,240 --> 00:11:12,900You know,
10100:11:12,940 --> 00:11:15,330this is when we're going to call it this.
10200:11:16,340 --> 00:11:20,360An analogy might be um you know,
10300:11:21,340 --> 00:11:22,800if we're going to say,
10400:11:22,800 --> 00:11:24,990when do we call something purple?
10500:11:25,940 --> 00:11:26,540Well,
10600:11:26,540 --> 00:11:30,210there are colors that we would all agree are purple.
10700:11:30,220 --> 00:11:31,110There are colors,
10800:11:31,110 --> 00:11:33,190we would all agree aren't purple.
10900:11:33,200 --> 00:11:35,620And then there's kind of this,
11000:11:35,630 --> 00:11:36,210you know,
11100:11:36,210 --> 00:11:40,370middle progression of Hughes where somebody might say,
11200:11:40,370 --> 00:11:41,050well,
11300:11:41,060 --> 00:11:44,360I'd call that more red than purple and someone else would say.
11400:11:44,940 --> 00:11:45,690Uh well,
11500:11:45,700 --> 00:11:48,060I I think it's more purple than red.
11600:11:48,540 --> 00:12:00,550Um So there is this area of Hugh that is not captured in the way the diagnosis is currently defined.
11700:12:00,560 --> 00:12:01,650In addition,
11800:12:01,660 --> 00:12:09,620there are many associated characteristics of autism that are not part of the diagnostic criteria,
11900:12:09,810 --> 00:12:16,010but research has shown that they they very frequently occur.
12000:12:16,640 --> 00:12:17,200So,
12100:12:17,210 --> 00:12:18,510for example,
12200:12:18,520 --> 00:12:26,330it's very common for people on the autism spectrum to have sleep disturbance that's not part of the diagnostic criteria,
12300:12:26,340 --> 00:12:35,160but it is a very common co occurring um brain characteristic because the brain is in charge of sleep.
12400:12:36,240 --> 00:12:47,010Um Also there are people that feel like um atypical motor coordination should be part of the diagnosis because many,
12500:12:47,010 --> 00:12:53,620many people on the spectrum have a history of having some difficulty with motor coordination,
12600:12:53,620 --> 00:12:54,850not everybody.
12700:12:54,860 --> 00:13:03,460But it's common enough that some people feel like it should be one of the diagnostic features that can present.
12800:13:05,640 --> 00:13:07,600So in talking about this,
12900:13:07,690 --> 00:13:12,450I hope you get the picture that neurology is complicated.
13000:13:12,940 --> 00:13:21,960And when we're trying to realize that certain things hang together in a person and are valuable enough that we should be talking about them,
13100:13:22,740 --> 00:13:28,330we have to go about some process of defining what we call what.
13200:13:28,390 --> 00:13:30,200And the same is true as I said,
13300:13:30,200 --> 00:13:31,120for dyslexia.
13400:13:31,120 --> 00:13:34,560Like what do we call a reading problem?
13500:13:34,570 --> 00:13:37,060Is that when there's a phonetic problem,
13600:13:37,070 --> 00:13:38,760a sight reading problem,
13700:13:38,770 --> 00:13:45,830a reading comprehension for paragraphs problem and then how how big does the problem have to be like,
13800:13:45,840 --> 00:13:48,090is it that they're one grade behind?
13900:13:48,100 --> 00:13:48,470You know,
14000:13:48,470 --> 00:13:57,390So they're just gets to be this um discussion in scientific communities about what do we call it?
14100:13:57,390 --> 00:13:58,250And when do we call it?
14200:13:58,250 --> 00:14:04,260That that is true for this diagnostic process?
14300:14:06,160 --> 00:14:27,250Some people will end up having what we call sub threshold autism characteristics and that can still be good to understand in the sense that there's a point at which understanding that a behavioral pattern or a reaction to the environment has a neurologic base that can still be helpful,
14400:14:27,640 --> 00:14:31,670even if there's not the full picture there,
14500:14:31,680 --> 00:14:43,150it may help us understand the person or help the person understand themselves to know that there's kind of this neurologic foundation there for that particular characteristic.
14600:14:45,040 --> 00:14:48,120And this happens in families as well.
14700:14:48,120 --> 00:14:56,630We talked about the genetic contribution and what may happen in families is that certain people have no characteristics,
14800:14:56,640 --> 00:15:11,060certain people have some characteristics and perhaps a few people in the family meet threshold for a full diagnosis as we talked about,
14900:15:11,070 --> 00:15:14,440because the diagnosis is neuro behavioral,
15000:15:14,450 --> 00:15:21,960it's really important that people understand that thinking skills does not come into this picture at all.
15100:15:22,440 --> 00:15:27,010There is no diagnostic criteria for autism that has to do with intellect,
15200:15:27,020 --> 00:15:30,280which is good because it doesn't have to do with intellect.
15300:15:30,290 --> 00:15:33,920It can co occur with intellectual difficulty,
15400:15:33,920 --> 00:15:41,060it can co occur with average thinking skills and it can co occur for those who have giftedness.
15500:15:41,340 --> 00:15:47,100So there's no implication when we have this diagnosis,
15600:15:47,940 --> 00:15:48,500um,
15700:15:48,510 --> 00:15:54,690that intellect will look a certain way or that the future of the individual will look a certain way.
15800:15:54,700 --> 00:15:59,890We're just talking about an unusual neurologic level of,
15900:15:59,900 --> 00:16:07,160of connection within a certain pathway and these kinds of characteristics tend to hang together in certain people.
16000:16:09,440 --> 00:16:14,080So let's switch gears now that we have kind of a foundation about neurology,
16100:16:14,090 --> 00:16:15,280what it looks like,
16200:16:15,280 --> 00:16:17,360how the diagnosis is created.
16300:16:18,640 --> 00:16:32,760Let's go to this topic about how might you approach someone if you want to share with them that you think maybe they're on the spectrum or they have some characteristics that are neurologic or autistic.
16400:16:33,140 --> 00:16:48,270Um I'm gonna start by just saying at the beginning that as you may um realize I talked to a lot of people about this topic and sometimes I am invited to talk about it and that gives me permission to talk about it.
16500:16:48,640 --> 00:16:51,560Um Other times I bring it up out of the blue,
16600:16:51,560 --> 00:16:53,770like we're kind of talking about today,
16700:16:54,140 --> 00:16:57,540some of that may be out of the blue in a professional context,
16800:16:57,540 --> 00:17:11,660some of it may be uh with people in my general environment and I want you to know that I do not talk to everyone about my thoughts,
16900:17:12,340 --> 00:17:13,170um,
17000:17:14,640 --> 00:17:21,870indiscriminately so I am not of the opinion that if we notice this pattern and someone else,
17100:17:21,880 --> 00:17:26,560we automatically are obliged to talk to them.
17200:17:27,730 --> 00:17:28,450Now,
17300:17:29,440 --> 00:17:49,170that is because there are some people that I can think of in my life and in my experience in my communities that I know that they have autistic characteristics or I suspect that they would be on the spectrum if they had an assessment,
17400:17:49,540 --> 00:17:59,960but I do not have the type of relationship with them where it would be okay for me to bring that up,
17500:18:01,130 --> 00:18:02,740for example.
17600:18:02,750 --> 00:18:04,350Um you know,
17700:18:04,350 --> 00:18:09,540this may be a person that I've had really tough interactions within the past,
17800:18:09,550 --> 00:18:18,060or we've had a really difficult relationship and we just don't have the kind of relationship where I have permission to speak into their life.
17900:18:18,740 --> 00:18:19,270Um,
18000:18:19,280 --> 00:18:23,450I may hope that other people get the opportunity to talk to them about it.
18100:18:24,140 --> 00:18:24,500Um,
18200:18:24,510 --> 00:18:37,570but I may conclude that anything that I say is probably going to be filtered through this tough relationship that we've had and might even make things worse that now.
18300:18:37,570 --> 00:18:44,660I'm less inclined to think about it because I really don't like you talking into my life.
18400:18:46,140 --> 00:18:46,590Um,
18500:18:46,600 --> 00:18:55,950there may also be contexts in which I think it would be inappropriate to raise it at that place and at that time,
18600:18:56,440 --> 00:19:00,010so I'm unlikely to raise it at a funeral.
18700:19:00,010 --> 00:19:01,060I may not,
18800:19:01,540 --> 00:19:02,420you know,
18900:19:02,430 --> 00:19:03,170um,
19000:19:03,180 --> 00:19:10,580I feel like I'm going to bring that up to a superior of mine at a professional convention or something like that.
19100:19:10,580 --> 00:19:11,050So,
19200:19:11,440 --> 00:19:11,860um,
19300:19:11,870 --> 00:19:20,770I do pick and choose when I think it would be wise to approach someone and say something.
19400:19:20,960 --> 00:19:23,140Now there are exceptions to that.
19500:19:23,140 --> 00:19:32,380So let's say this person that I've had kind of a tough relationship with in my life is really in a dire spot,
19600:19:32,390 --> 00:19:36,720like they are struggling significantly and they can't figure out why.
19700:19:36,730 --> 00:19:46,960And really I believe it's related to things that would be eased if they knew this conceptualization of autism.
19800:19:48,140 --> 00:19:48,530Um,
19900:19:48,540 --> 00:19:49,530in that situation,
20000:19:49,530 --> 00:19:55,750I probably would decide to go ahead and approach them because of their high level of need.
20100:19:55,760 --> 00:19:58,130So in that situation,
20200:19:58,140 --> 00:20:04,760the context would override the relationship concerns that I have.
20300:20:05,240 --> 00:20:10,850So I always kind of make that judgment based on the relationship I have with the person,
20400:20:11,340 --> 00:20:15,060the context that we're in and and maybe the time,
20500:20:15,070 --> 00:20:16,950like is this the time to do it?
20600:20:18,040 --> 00:20:27,100And then I would make exceptions based on just what I think would be wise at that time based on their need based on where they're at.
20700:20:27,110 --> 00:20:27,490Um,
20800:20:27,490 --> 00:20:33,470and based on what I could contribute in cases where we do decide,
20900:20:33,720 --> 00:20:33,990you know,
21000:20:33,990 --> 00:20:36,260I think I'm going to at least bring it up.
21100:20:36,740 --> 00:20:57,860One thing that I find helpful is to think about this image of putting our toe in the water that we don't have to bring up the topic in all its glory and detail and kind of get down to the nitty gritty and convince someone that this is correct.
21200:20:57,870 --> 00:21:02,290We can kind of test the waters so to speak.
21300:21:02,290 --> 00:21:11,230So we could bring it up something gently or bring up something in a non direct way.
21400:21:11,240 --> 00:21:11,920Um,
21500:21:11,920 --> 00:21:14,330and kind of test the waters to see,
21600:21:14,340 --> 00:21:20,040does this person have a strong negative reaction to the topic,
21700:21:20,050 --> 00:21:24,040do they jump on board and seem really interested to talk about it?
21800:21:24,050 --> 00:21:26,670Do you think there's an opening to go deeper?
21900:21:27,040 --> 00:21:31,640So if there's some opening and you feel like there's some receptiveness,
22000:21:31,640 --> 00:21:35,430you can always share more or provide more information.
22100:21:35,440 --> 00:21:38,150So that's one thing that I keep in mind too,
22200:21:38,150 --> 00:21:40,840like putting feelers out,
22300:21:40,850 --> 00:21:47,060how how comfortable is this person with introducing this new topic,
22400:21:47,070 --> 00:21:57,420How open might they be when you decide you are going to share something or bring up the topic,
22500:21:57,430 --> 00:22:00,040you could do this in a variety of ways.
22600:22:00,050 --> 00:22:14,730So one way might be to share a personal story that kind of gives us an in in the sense that um I have a reason for bringing this up because I've experienced it and this is my experience.
22700:22:14,730 --> 00:22:25,540So if you're a person who's been diagnosed and you found that helpful or if you're a parent of a child or young adult who's been diagnosed,
22800:22:25,550 --> 00:22:28,670sometimes that just gives you,
22900:22:29,340 --> 00:22:36,830um it creates a context for the person to hear your wisdom based on your experience.
23000:22:36,840 --> 00:22:37,600So,
23100:22:37,610 --> 00:22:38,040oh,
23200:22:38,040 --> 00:22:40,400you've had this personal experience,
23300:22:40,410 --> 00:22:43,350I would like to hear what you have to say.
23400:22:44,140 --> 00:22:52,770So sometimes approaching it in that way I'm bringing it up because what you're experiencing reminds me of myself.
23500:22:55,640 --> 00:23:00,900Sometimes you can bring it up in the context of new learning that you've had.
23600:23:00,910 --> 00:23:05,430So maybe you're not a person who has experienced that yourself,
23700:23:05,440 --> 00:23:19,120but maybe you have recently heard a lecture or read a book or listen to a podcast and the light bulb just went off about various things maybe about yourself and about,
23800:23:19,130 --> 00:23:19,720you know,
23900:23:19,720 --> 00:23:22,660how neurology impacts people in general,
24000:23:22,670 --> 00:23:32,350like this has opened up a curiosity in you and you've really been thinking about that for yourself and you're thinking about it for this other person.
24100:23:34,240 --> 00:23:35,600And in that context,
24200:23:35,600 --> 00:23:50,260if you do lead with I learned about this and I've been thinking about it regarding myself and I realized that I tend to do this and this is really neurologically based.
24300:23:50,260 --> 00:23:51,780It's so interesting to me,
24400:23:51,780 --> 00:23:57,460it's helped me so much when we do lead with a personal experience.
24500:23:57,470 --> 00:23:59,670Even if it's not a diagnosis,
24600:23:59,690 --> 00:24:00,340you know,
24700:24:00,340 --> 00:24:13,950I have this personal experience where I've learned this about myself and then introducing the other person to think about themselves may be just a nice flow to the conversation.
24800:24:16,940 --> 00:24:17,270Mm hmm.
24900:24:17,840 --> 00:24:23,980Another way to approach it is to have a wondering or a curious tone.
25000:24:23,990 --> 00:24:38,080I think what we want to avoid is to have any kind of lecturing tone or that we are going to argue our point and that they must agree with us by the end of the conversation.
25100:24:38,080 --> 00:24:47,380I think what's likely to happen in that sense is that they can feel backed into a corner and they can push back really just to have more space.
25200:24:47,840 --> 00:24:52,010And so if we approach it more as a wondering,
25300:24:52,540 --> 00:24:53,110you know,
25400:24:53,110 --> 00:24:54,250I've been wondering,
25500:24:54,250 --> 00:25:04,400I've noticed this or that and I've been wondering if autism would be a way to understand what's been happening and kind of open up possibilities.
25600:25:04,410 --> 00:25:08,360What do you think or what's your thought about that?
25700:25:10,050 --> 00:25:17,050That gives the person's space to react and to think and they don't feel rushed or pushed.
25800:25:17,640 --> 00:25:18,450Um,
25900:25:18,940 --> 00:25:22,360and that freedom to explore the thought,
26000:25:22,840 --> 00:25:23,340um,
26100:25:23,340 --> 00:25:27,570with you or on their own can really bring about some fruit,
26200:25:27,580 --> 00:25:28,270I think,
26300:25:28,740 --> 00:25:29,690um,
26400:25:29,700 --> 00:25:41,560that can encourage people to learn more and give people space to get their in their own time now as a professional.
26500:25:41,740 --> 00:25:57,190I also have contexts where I am with a patient and I'm talking to them about this kind of based on my own clinical expertise and they've come in as a patient and I use the word patient because I work in a hospital,
26600:25:57,200 --> 00:26:01,490but you could say client or whatever kind of fits the situation.
26700:26:01,490 --> 00:26:03,190If you work in a school,
26800:26:03,200 --> 00:26:04,560there would be students,
26900:26:04,560 --> 00:26:05,260et cetera,
27000:26:05,940 --> 00:26:08,360and they have come in for some reason.
27100:26:08,360 --> 00:26:13,900And sometimes it has to do with an autism diagnosis and sometimes it does not.
27200:26:13,910 --> 00:26:17,120I work with patients who have all kinds of different backgrounds,
27300:26:17,120 --> 00:26:25,670someone may have had a head injury and be coming in for that or a stroke or an assessment for dementia.
27400:26:26,040 --> 00:26:29,780And I just realized in the midst of that,
27500:26:29,790 --> 00:26:32,860that there's an undiagnosed autism spectrum.
27600:26:32,870 --> 00:26:35,800So sometimes I'm bringing it up cold,
27700:26:35,810 --> 00:26:36,310um,
27800:26:36,310 --> 00:26:38,910where there's no context and they're not expecting it.
27900:26:38,920 --> 00:26:42,860And other times I'm bringing it up or they are expecting it.
28000:26:44,640 --> 00:26:45,360Um,
28100:26:46,140 --> 00:26:48,880I think it's pretty straightforward when they're expecting it.
28200:26:48,880 --> 00:26:50,630So I'm not going to cover that.
28300:26:50,630 --> 00:26:53,880I think what I said at the beginning of the episode,
28400:26:53,890 --> 00:26:58,460does summarize how I how I explain autism to people,
28500:26:58,840 --> 00:27:00,800but if they're not expecting it,
28600:27:00,810 --> 00:27:08,170what I find helpful is to summarize to them what they have said to me,
28700:27:08,640 --> 00:27:12,060so that I make sure I understood it correctly.
28800:27:12,940 --> 00:27:15,660But I'll take that summary and I'll say,
28900:27:15,780 --> 00:27:16,090you know,
29000:27:16,090 --> 00:27:20,050it sounds like you're a person who uh,
29100:27:20,060 --> 00:27:23,440really gets revived by alone time.
29200:27:23,440 --> 00:27:32,870And sometimes the drama of female relationships just actually feels overwhelming that you would be more content with your,
29300:27:32,880 --> 00:27:34,660your cat in a good book.
29400:27:34,660 --> 00:27:39,380And sometimes people at work seem to think you're standoffish or whatever.
29500:27:39,380 --> 00:27:48,750And so I go through the social part and then I'll say it also seems like when you're interested in something you are all in,
29600:27:48,750 --> 00:27:49,100like,
29700:27:49,110 --> 00:27:50,950you love that thing.
29800:27:51,340 --> 00:27:51,780Uh,
29900:27:51,790 --> 00:27:56,770and so I'll go through each of the criteria just saying that.
30000:27:57,540 --> 00:28:00,090So I'm not bringing up the word autism,
30100:28:00,280 --> 00:28:06,010I'm just showing them that I've heard their description of themselves.
30200:28:07,640 --> 00:28:10,400And I in my own mind,
30300:28:11,340 --> 00:28:18,360I'm saying it back because I know that these things represent some of those criteria,
30400:28:20,940 --> 00:28:22,910then I will say,
30500:28:22,920 --> 00:28:23,630you know,
30600:28:23,640 --> 00:28:31,010when these kinds of things happen and they're expressed in the same person.
30700:28:31,440 --> 00:28:34,000One of the things I think about is neurology,
30800:28:34,000 --> 00:28:37,000because these patterns of neurology,
30900:28:37,000 --> 00:28:39,500these freeways or highways in the brain,
31000:28:40,470 --> 00:28:40,840you know,
31100:28:40,840 --> 00:28:46,500there are patterns that contain these characteristics and when they happen together,
31200:28:46,500 --> 00:28:49,520often it's because of a neurologic,
31300:28:49,530 --> 00:28:50,660um,
31400:28:50,670 --> 00:28:59,540space in there that has some different kinds of wiring that people are noticing and when we see that in the same person,
31500:28:59,550 --> 00:29:03,850we have a name for that and what we call that is autism.
31600:29:05,040 --> 00:29:10,060And then I'll just kind of let them process or react.
31700:29:10,640 --> 00:29:12,770Now I have to say that I am,
31800:29:13,140 --> 00:29:17,050I am very surprised um,
31900:29:17,060 --> 00:29:20,070at how many times somebody in the room,
32000:29:20,070 --> 00:29:24,600whether it's a family member or themselves will say I thought so,
32100:29:24,610 --> 00:29:29,030but I didn't want to bring it up and maybe there's a group of three of them,
32200:29:29,030 --> 00:29:29,360right?
32300:29:29,360 --> 00:29:31,360Like the client and family members,
32400:29:31,360 --> 00:29:33,970but they've never talked to each other about it.
32500:29:33,980 --> 00:29:35,520They've just been wondering,
32600:29:35,520 --> 00:29:38,910but they don't feel like it's okay to bring the topic up.
32700:29:38,920 --> 00:29:40,960Kind of like we talked about before.
32800:29:40,980 --> 00:29:42,990Like is this okay to mention,
32900:29:43,000 --> 00:29:44,450is this okay to think about?
33000:29:44,840 --> 00:29:46,890And so we'll go from there.
33100:29:49,220 --> 00:29:59,080Sometimes this is something that they have never considered and they are surprised and kind of pause and have to take that in.
33200:29:59,090 --> 00:30:01,950And I might kind of ask them,
33300:30:01,950 --> 00:30:03,560what are your thoughts about that.
33400:30:04,340 --> 00:30:05,170Um,
33500:30:06,340 --> 00:30:08,110if there is,
33600:30:08,120 --> 00:30:09,190uh,
33700:30:09,200 --> 00:30:14,790a misunderstanding or they just don't know much about autism or they're thinking of it in a different way.
33800:30:14,800 --> 00:30:17,350I just try to give that education,
33900:30:18,440 --> 00:30:24,530if the person seems to be stressed by that or to be upset,
34000:30:24,540 --> 00:30:27,670I just try to figure out what the barrier is.
34100:30:28,140 --> 00:30:33,680So if it's not an information gap that I fill in with education,
34200:30:33,680 --> 00:30:38,550it may be an emotional reaction like we talked about last time,
34300:30:40,540 --> 00:30:45,640um I may say it sounds like maybe you feel like this is a criticism,
34400:30:45,650 --> 00:30:46,090you know,
34500:30:46,090 --> 00:30:48,410this isn't a criticism to me,
34600:30:48,420 --> 00:31:01,210it's really just the self revelation that can help you so much understand yourself and what you need and um really just feel better in your own skin.
34700:31:01,210 --> 00:31:03,360There are lots of things we can recommend.
34800:31:05,640 --> 00:31:19,960One of the things I try to do if the person is not really feeling open to the diagnosis or the discussion at that time is just to try to leave the door open.
34900:31:20,540 --> 00:31:22,600So I might say,
35000:31:22,610 --> 00:31:23,170well,
35100:31:23,170 --> 00:31:27,150if you ever want to talk more about that topic,
35200:31:27,160 --> 00:31:29,960let me know because I'd be happy to do that.
35300:31:30,540 --> 00:31:32,640Um but in my mind,
35400:31:32,640 --> 00:31:34,620I also know that I just,
35500:31:34,690 --> 00:31:40,210I may just want to plant the seed and let them go and not push the topic,
35600:31:40,250 --> 00:31:42,460but now that I've introduced it,
35700:31:42,840 --> 00:31:45,440they may process that over time.
35800:31:45,460 --> 00:31:48,460Someone else may bring it up to them in the future.
35900:31:48,470 --> 00:31:51,180It may all fall together to them,
36000:31:51,180 --> 00:31:52,660but at a different time.
36100:31:52,670 --> 00:31:55,950So planting a seed is okay as well.
36200:31:58,400 --> 00:31:59,590I may also say,
36300:31:59,590 --> 00:32:00,060you know,
36400:32:00,710 --> 00:32:04,960at some point it doesn't matter if we call it that,
36500:32:04,970 --> 00:32:10,190but I do think there's some neurology behind it and because of that,
36600:32:10,190 --> 00:32:13,270I have some things that I think would really be helpful for you.
36700:32:13,740 --> 00:32:18,920So sometimes the person may be able to consider that there is some neurology there,
36800:32:18,940 --> 00:32:21,770but not wanting to call it a particular thing?
36900:32:22,140 --> 00:32:23,510Uh and other times,
37000:32:23,520 --> 00:32:23,880you know,
37100:32:23,880 --> 00:32:31,950I just try to focus on what I think would be helpful regardless of whether the person wants to call it a specific thing.
37200:32:34,340 --> 00:32:39,580Other times I just let it be,
37300:32:39,580 --> 00:32:46,680I don't bring up the topic or maybe I have and it's been shut down and I just,
37400:32:46,740 --> 00:32:53,130in my own mind think of the person through that lens when it's helpful.
37500:32:53,130 --> 00:32:59,770So maybe there is a behavior or a communication that otherwise I would feel a bit perplexed about.
37600:33:00,440 --> 00:33:11,950Um but because I can remind myself that there neurology maybe um autistic in nature that that can help me understand.
37700:33:11,960 --> 00:33:17,310So it could help me um when I interact with the individual,
37800:33:17,320 --> 00:33:23,760even if we're not kind of overtly calling ah the characteristics by any particular name.
37900:33:25,440 --> 00:33:33,410Those are a summary of my thoughts when it comes to describing autism and autistic characteristics to others,
38000:33:33,420 --> 00:33:44,560introducing that topic kind of feeling out how they think about it and planting a seed for someone to process that information over time.
38100:33:45,840 --> 00:33:49,760I'm really glad you joined me for this last episode of the series,
38200:33:49,760 --> 00:34:02,960talking about autism and next time we are going to begin a new series that has to do with the experience and expression of autistic characteristics across the lifespan.
38300:34:03,840 --> 00:34:08,850I'm going to be talking about topics such as the developing nervous system.
38400:34:08,850 --> 00:34:13,420So the brain doesn't fully develop until about 21 years of age.
38500:34:13,420 --> 00:34:21,260So how can that impact the evolution of autistic characteristics through childhood and adolescence?
38600:34:21,440 --> 00:34:27,600We're going to talk about hormonal shifts and how that can impact these things puberty,
38700:34:27,600 --> 00:34:28,630menstrual cycles,
38800:34:28,630 --> 00:34:29,540pregnancy,
38900:34:29,550 --> 00:34:31,100menopause aging,
39000:34:31,740 --> 00:34:38,620and we're also going to talk about other things related to aging on the autism spectrum,
39100:34:38,630 --> 00:34:46,260such as the experience of shifts and how the characteristics our felt or expressed.
39200:34:47,440 --> 00:34:48,460Until then,
39300:34:48,570 --> 00:34:51,690I hope you have good talks about autism with each other.
 

Talking About Autism: Navigating Emotional Atmospheres

Join Dr. Regan for the second episode of the series "Talking About Autism." This episode focuses on how the thoughtful navigation of emotions during conversations about autism can create space and freedom for more discussions.
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Dr. Regan's Resources
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website
Resources for Clinicians
 
Read the transcript:
00:00:05,740 --> 00:00:06,480Hello,300:00:06,490 --> 00:00:12,460This is Dr Theresa Regan. Thank you for joining me for this episode of Autism in the Adult.400:00:13,140 --> 00:00:19,260I am happy that you're joining us for this series called Talking about Autism.500:00:19,270 --> 00:00:37,150This is the second episode, and I had originally predicted it was going to be about talking to others when you see autistic characteristics in them and you wonder if a diagnostic evaluation would be helpful for them?600:00:38,740 --> 00:00:44,170What happened is that, as I'm mulling around the topics for the series,700:00:44,180 --> 00:00:49,560I really couldn't get my mind off what was going to be the 3rd episode --800:00:50,140 --> 00:00:56,260which I'm going to call "navigating emotional atmospheres"... when we're talking about autism.900:00:57,040 --> 00:01:13,790And I've come to the conclusion that I'm going to cover that topic here in the second episode because I feel like it's really important to consider before we talk to other people about autistic characteristics.1000:01:13,790 --> 00:01:20,860How would we navigate the emotions that are sometimes present around the topic itself?1100:01:21,640 --> 00:01:39,160Last episode we talked about Talking About Autism when you are on a journey toward evaluation yourself ... when you're considering that, or when you have a new diagnosis and you might want to talk to people about your diagnosis and about autism.1200:01:40,640 --> 00:01:40,960So,1300:01:40,960 --> 00:01:50,260this episode is going to be focused a little bit more on navigating the complexity of people's emotional responses.1400:01:50,740 --> 00:01:54,850And as we talked about in the first episode,1500:01:54,850 --> 00:02:03,690it really is an emotionally charged topic and in some ways that's a bit mystifying to me.1600:02:03,700 --> 00:02:12,650... the amount of emotion people have about a topic that sometimes they're not even really impacted by on a personal level,1800:02:15,840 --> 00:02:22,160but talking about autism often does involve navigating emotional atmospheres.1900:02:22,780 --> 00:02:23,000Um,2000:02:23,000 --> 00:02:27,760and it's hard to predict what the atmosphere is going to look like or how complex it is.2100:02:29,040 --> 00:02:38,010Sometimes the atmosphere may be charged because we would like to talk to someone about the topic and how it impacts,2200:02:38,010 --> 00:02:38,690let's say,2300:02:38,690 --> 00:02:40,110our own family,2400:02:40,120 --> 00:02:44,600or how it impacts someone in the family or how it impacts you.2500:02:44,610 --> 00:02:51,730And there can just be this unusual response of2600:02:51,740 --> 00:02:53,630a lot of emotional charge.2700:02:53,640 --> 00:03:04,360I spoke with a young woman recently who was saying that she was shocked at how angry people in her family were when she brought the topic up.2800:03:04,940 --> 00:03:10,160And that is not an unusual thing for someone to share, that2900:03:10,170 --> 00:03:12,310it can really charge people up.3000:03:12,320 --> 00:03:13,660And um,3100:03:14,350 --> 00:03:17,440sometimes you're not just bringing up a topic,3200:03:17,450 --> 00:03:22,560you're bringing up all this emotional processing and content.3300:03:24,240 --> 00:03:25,270Other times,3400:03:25,270 --> 00:03:30,560people on this journey toward an autism diagnosis or self awareness,3500:03:30,940 --> 00:03:33,150they may feel other emotions too.3600:03:33,150 --> 00:03:39,460They might feel relief that they finally understand how they're wired.3700:03:39,940 --> 00:03:40,330Um,3800:03:40,330 --> 00:03:51,550they might share that this is such a meaningful and important thing to them that they really have a lot of emotion about the value of the diagnosis.3900:03:52,140 --> 00:03:55,130Other people may really be in a different spot.4000:03:55,130 --> 00:03:59,150They might be in this spot where they're processing.4100:03:59,160 --> 00:03:59,740Um,4200:03:59,750 --> 00:04:01,040just surprise.4300:04:01,040 --> 00:04:05,950Like they were not expecting it, processing maybe grief or fear.4400:04:05,960 --> 00:04:06,730Um,4500:04:06,740 --> 00:04:24,830a lot of emotions can come with this diagnosis or this discussion. And for people who have been in the autistic community for a while and they have this deep passion to advocate for,4600:04:24,840 --> 00:04:25,670um,4700:04:25,680 --> 00:04:27,930anyone who um,4800:04:27,940 --> 00:04:37,810has diversity in their neurology ... and many times that passion comes with a lot of emotional charge as well.4900:04:38,080 --> 00:04:55,940And so we may have people who are so passionate about what language is used or how we should interact with others or support others or whether we should have interventions for autism or not.5000:04:55,950 --> 00:05:09,050So there can also be this passionate approach to what is right or wrong to say or do for the autistic individual or within the community.5100:05:11,240 --> 00:05:22,150What can happen is that the presence of this emotion can shut down the discussion before it's really launched.5200:05:22,540 --> 00:05:31,980So we have something come up and it's responded to with strong emotion and it's very common,5300:05:31,980 --> 00:05:39,190I think for that strong emotion to overtake the topic itself and then people in the room realize,5400:05:39,200 --> 00:05:40,000oh,5500:05:40,010 --> 00:05:40,570okay,5600:05:40,570 --> 00:05:42,960this is not okay to talk about.5700:05:42,970 --> 00:05:45,830This was a really strong,5800:05:45,840 --> 00:05:47,050passionate,5900:05:47,580 --> 00:05:54,850intense reaction and I feel like I'm getting the emotional message that this is not okay.6000:05:56,140 --> 00:05:56,830In fact,6100:05:56,840 --> 00:05:58,530I think to myself,6200:05:58,540 --> 00:06:06,830if I wanted to make sure that it was not okay to talk about some particular topic and that everyone around me knew it,6300:06:06,840 --> 00:06:13,160I probably would be very quick to have emotional responses.6400:06:13,170 --> 00:06:20,350I'd probably be ready with criticism or judgment or correction or logical arguments.6500:06:20,740 --> 00:06:21,440Um,6600:06:21,450 --> 00:06:27,850maybe even just joking at someone's expense or whatever I could do to make6700:06:28,740 --> 00:06:35,360the discussion so intense that people realize that needs to be shut down.6800:06:35,740 --> 00:06:43,170So when I am approaching this topic of how do we say autism is okay to talk about?6900:06:43,170 --> 00:06:44,830Let's bring it to the table.7000:06:44,830 --> 00:06:46,160It's always okay.7100:06:46,160 --> 00:06:48,100How do we create that atmosphere?7200:06:48,110 --> 00:06:54,350I think one of the things we focus on is protecting the emotional atmosphere.7300:06:54,840 --> 00:06:55,610Um,7400:06:55,620 --> 00:07:10,600and being aware that the emotions that we are filtering into the conversation may actually really detract from someone's comfort level of bringing it up.7500:07:10,670 --> 00:07:14,860It may detract from people's ability to process the topic itself.7600:07:15,240 --> 00:07:21,230And so I'm just really conscious of trying to attend to that.7700:07:21,240 --> 00:07:24,060Whenever I speak with someone about the topic,7800:07:28,340 --> 00:07:31,780there's a lot of emotion about what to call things.7900:07:31,790 --> 00:07:34,310So what language are we using?8000:07:34,320 --> 00:07:46,700Some people really strongly want the language of "the autistic individual" or "the autistic" because they really self identify with that neurology.8100:07:46,700 --> 00:07:47,620It's who they are.8200:07:47,620 --> 00:07:49,000It's how they're knit together.8300:07:49,340 --> 00:07:51,650They welcome that identification.8400:07:52,040 --> 00:07:57,090Other people do not want to be known as an autistic individual.8500:07:57,090 --> 00:08:07,660They feel more comfortable saying they are an individual on the spectrum or they have autism, and other people have strong emotions against that.8600:08:07,940 --> 00:08:18,120So we even have this really emotional response to what words are okay to use and that can really um,8700:08:18,130 --> 00:08:20,360come into the discussion as well.8800:08:21,740 --> 00:08:29,510People may have very charged reactions about the,8900:08:29,790 --> 00:08:33,420the peaks and valleys of anyone's journey and by that,9000:08:33,420 --> 00:08:37,460I mean that in our culture,9100:08:37,470 --> 00:08:51,060if someone is struggling with something and oftentimes people on a journey toward diagnosis have come to that journey because they've hit some season of struggle.9200:08:51,440 --> 00:08:52,550Um,9300:08:52,940 --> 00:08:54,130in our culture,9400:08:54,130 --> 00:09:07,990we're very focused on fixing these struggles and sometimes that in itself can shut down discussions about complex things,9500:09:07,990 --> 00:09:10,660about things that are not easily fixed.9600:09:12,540 --> 00:09:21,670People on a journey probably get a lot of advice before they get to this journey of assessment for autism.9700:09:21,740 --> 00:09:24,560They've probably gotten a lot of advice like,9800:09:25,040 --> 00:09:25,370uh,9900:09:25,380 --> 00:09:30,900"that wouldn't happen in my house" or "this is how we did it and it fixed it completely,"10000:09:30,910 --> 00:09:32,540or um,10100:09:32,550 --> 00:09:38,510"these are the seven steps to being free from anxiety and if you do these,10200:09:38,520 --> 00:09:40,660then you shouldn't have a problem."10300:09:43,040 --> 00:09:43,400Um,10400:09:43,410 --> 00:09:45,270in my own personal journey,10500:09:45,270 --> 00:09:47,540I really experienced that a lot.10600:09:47,550 --> 00:09:48,300Um,10700:09:48,310 --> 00:09:51,940as a parent, and I know this podcast is about adults,10800:09:51,940 --> 00:09:56,750but the topic of emotional processing um,10900:09:56,760 --> 00:10:00,460is just a very human topic across the lifespan.11000:10:01,140 --> 00:10:01,500Now,11100:10:01,500 --> 00:10:05,210one of the things that my son on the spectrum struggled with,11200:10:05,220 --> 00:10:05,750um,11300:10:05,760 --> 00:10:09,090so much was sleep and also as an infant,11400:10:09,090 --> 00:10:12,310he was just very colicky and upset.11500:10:12,310 --> 00:10:12,500He,11600:10:12,500 --> 00:10:14,960he had a difficulty calming.11700:10:15,340 --> 00:10:16,110Um,11800:10:16,120 --> 00:10:18,550and a lot of things went into that,11900:10:18,550 --> 00:10:20,050but um,12000:10:20,050 --> 00:10:23,880we were really struggling with a sleep issue.12100:10:23,880 --> 00:10:30,260And in fact he didn't End up sleeping through the night on a consistent basis until he was eight years old.12200:10:30,740 --> 00:10:34,020And that was really difficult on him.12300:10:34,030 --> 00:10:48,410It made all the other features more difficult for him to manage and it impacted our resilience to and our ability to um really sustain wellness as a household.12400:10:48,410 --> 00:10:50,550So I remember um,12500:10:50,560 --> 00:10:52,260getting this,12600:10:52,270 --> 00:11:07,050he was in daycare twice a week and I went to pick him up one day when he was 10 months old and the nursery leader who had had him in her,12700:11:07,060 --> 00:11:10,360they call it class in her class for um,12800:11:10,370 --> 00:11:13,020from the beginning of when we started going,12900:11:13,530 --> 00:11:21,880she left me a note and it said "his crying is disruptive to the class.13000:11:22,440 --> 00:11:25,050Please have him better by tomorrow."13100:11:26,030 --> 00:11:31,570And that is kind of an example of this,13200:11:33,740 --> 00:11:46,730this mindset that things can be fixed if only you're good enough parent or if only you're committed enough to be um,13300:11:46,740 --> 00:11:52,960a calm person or if only you're committed enough to be a good spouse,13400:11:53,040 --> 00:11:53,410you know,13500:11:53,410 --> 00:11:54,750whatever that looks like.13600:11:55,590 --> 00:12:00,270And not only was I a struggling mom,13700:12:00,290 --> 00:12:05,210but now I had been told that I should have this fixed.13800:12:05,220 --> 00:12:08,260I should be able to fix it.13900:12:09,010 --> 00:12:14,770And also another example when he was 14000:12:14,780 --> 00:12:16,200a couple of years old,14100:12:16,200 --> 00:12:17,470two or three years old.14200:12:17,480 --> 00:12:22,840I was looking into Melatonin to assist with sleep.14300:12:22,850 --> 00:12:49,260And I read the reviews online for different products and a mother on their wrote this scathing comment that um using Melatonin for children is child abuse because um any good parents should know how to get their kids down for bed and that would never happen in her house.14400:12:49,640 --> 00:12:52,450So it was long... long, 14500:12:52,450 --> 00:12:54,130that's the gist of it though.14600:12:54,140 --> 00:12:55,850Um and so,14700:12:55,860 --> 00:12:56,420you know,14800:12:56,420 --> 00:13:05,290these messages that are so emotionally intense and not only does it bring about this shame and blame and hopelessness,14900:13:05,300 --> 00:13:09,780but it also creates this atmosphere where it's clear15000:13:09,780 --> 00:13:12,310it is not okay to say that you're struggling.15100:13:12,640 --> 00:13:24,460Um it's not okay to bring up um that you've tried everything and you don't know what's going on um because not only are you struggling,15200:13:24,460 --> 00:13:34,460but apparently it's also something that you could very well fix um, and you should fix and therefore the struggle is also your fault.15300:13:34,940 --> 00:13:39,680So these emotional um... these emotional charges,15400:13:39,690 --> 00:13:48,370I think really dampen our ability to give people the freedom to talk about all the ups and downs of their life,15500:13:48,370 --> 00:13:53,590like life is messy and good and hard and you know,15600:13:53,590 --> 00:14:00,860I feel like I can bring up any topic um and realize that it's okay to share that.15700:14:01,340 --> 00:14:02,320Instead.15800:14:02,320 --> 00:14:10,550I think we have a lot of emotional overtones to what's okay to bring up and what's okay to talk about.15900:14:12,640 --> 00:14:19,860I remember um being struck too uh when my son was about a year old,16000:14:20,440 --> 00:14:23,870one of my colleagues had an infant,16100:14:23,870 --> 00:14:25,170this was her first child,16200:14:25,180 --> 00:14:29,840and after I think five days after she was born,16300:14:29,850 --> 00:14:39,100um my colleague brought her in and she was just this bundle of pink, cute as can be, slept the whole time.16400:14:39,600 --> 00:14:41,610And you know,16500:14:41,610 --> 00:14:45,860that was so different than what was happening in my home.16600:14:46,340 --> 00:14:47,890And she said,16700:14:47,890 --> 00:14:48,360gosh,16800:14:48,360 --> 00:14:52,560I'm really a little um nervous and watchful,16900:14:52,560 --> 00:14:56,110because I have to wake her up in the middle of the night for her to eat.17000:14:56,120 --> 00:14:56,660You know,17100:14:56,660 --> 00:15:00,210she's already sleeping through and I'm a little nervous about,17200:15:00,220 --> 00:15:00,550you know,17300:15:00,550 --> 00:15:02,780her nutrition, and, of course,17400:15:02,790 --> 00:15:06,760here I am not sleeping for a year.17500:15:07,240 --> 00:15:11,010And another colleague said to her,17600:15:11,250 --> 00:15:11,690"oh,17700:15:11,690 --> 00:15:13,810what a good baby you have."17800:15:14,440 --> 00:15:21,250And usually I'm very measured in my speech and I think about what I say ahead of time,17900:15:21,250 --> 00:15:33,860but I felt this surge going from my toes up to my ... my voice and I blurted out, "all babies are good."18000:15:35,140 --> 00:15:36,560And she said,18100:15:36,560 --> 00:15:37,340"well,18200:15:37,360 --> 00:15:37,950yeah,18300:15:37,950 --> 00:15:39,360but you know what I mean?"18400:15:39,840 --> 00:15:48,370And I realized that we attach goodness to a baby,18500:15:48,370 --> 00:15:49,860that's easy.18600:15:50,590 --> 00:15:51,130I said,18700:15:51,130 --> 00:15:51,520"you mean,18800:15:51,520 --> 00:15:53,950she's easy and that's good."18900:15:55,040 --> 00:15:57,020But all babies are good.19000:15:57,030 --> 00:16:08,250So I think we have to watch our emotional tone so that we make sure everyone knows that every infant has value.19100:16:08,260 --> 00:16:11,660Every individual is important.19200:16:12,120 --> 00:16:13,060There aren't,19300:16:13,070 --> 00:16:13,960you know,19400:16:14,640 --> 00:16:16,990good babies and bad babies.19500:16:17,440 --> 00:16:26,460There are struggling babies and babies that are not struggling and so forth across the whole lifespan,19600:16:26,840 --> 00:16:35,150that our emotional charge can sometimes make people feel less than good, less than valued.19700:16:36,060 --> 00:17:00,150And so I think that really became apparent to me and I'm much more aware of protecting the emotional atmosphere when I'm speaking to someone to really protect that they understand that they are important and that we're having this tough discussion because their well being is important.19800:17:01,840 --> 00:17:12,020What I started to think about is that even though I want people to be have the freedom and the space to be where they're at,19900:17:12,020 --> 00:17:13,920whether they're celebrating this,20000:17:13,930 --> 00:17:15,600whether they're relieved,20100:17:15,600 --> 00:17:16,960whether they're struggling,20200:17:17,540 --> 00:17:23,120whether they're upset about the diagnosis or the concept,20300:17:23,130 --> 00:17:25,450I want to give people space,20400:17:25,630 --> 00:17:35,460they don't have to react in a certain way in order to be good or in order to please me just because I'm in a different place.20500:17:36,840 --> 00:17:38,220On the other hand,20600:17:38,230 --> 00:17:48,060I really want to balance that freedom to feel with my own awareness of protecting the emotional atmosphere.20700:17:49,140 --> 00:18:09,170There are some emotions that I really um try to protect people from during our conversations and The Big one I would say that I never feel is helpful in the conversation is shame.20800:18:10,240 --> 00:18:15,780Um I just feel like that is so easy.20900:18:16,940 --> 00:18:29,670Mhm uh emotionally to bring into conversations when someone is struggling that I really try to be very careful to protect what's going on from any shame.21000:18:30,140 --> 00:18:36,760Um and I would also say emotions like hopelessness,21100:18:36,760 --> 00:18:37,620helplessness,21200:18:37,620 --> 00:18:42,780worthlessness, and it's okay for people to feel fear...21300:18:42,780 --> 00:18:48,380But I do try to protect from that just global fear that doesn't leave,21400:18:48,390 --> 00:18:48,680you know,21500:18:48,680 --> 00:18:50,360this is not a season of fear.21600:18:50,360 --> 00:18:56,230This is "I am afraid of a diagnosis in general."21700:18:56,640 --> 00:19:01,100And so I try to have some protection for that.21800:19:02,740 --> 00:19:04,010By protection.21900:19:04,020 --> 00:19:07,640I mean that I try to really monitor my own language.22000:19:07,650 --> 00:19:10,300I try to acknowledge what people are saying,22100:19:10,300 --> 00:19:11,770but I do point out,22200:19:12,340 --> 00:19:13,110um,22300:19:13,120 --> 00:19:18,270when I feel like an emotion is really just working against their wellness,22400:19:18,640 --> 00:19:19,080you know,22500:19:19,080 --> 00:19:23,950it sounds like this is about shame and there is no criticism here.22600:19:24,440 --> 00:19:26,460This is not a criticism.22700:19:26,920 --> 00:19:38,230This is to increase your power to understand yourself to be able to get centered when you're just feeling off center.22800:19:39,010 --> 00:19:40,860This is not a criticism.22900:19:41,740 --> 00:19:46,170So I may say things like that to protect the atmosphere.23000:19:51,740 --> 00:20:00,630I also try to explain to people if they are in a point of struggle about the topic,23100:20:00,640 --> 00:20:02,360let's say I've brought it up.23200:20:03,440 --> 00:20:05,360They're struggling with the topic.23300:20:06,950 --> 00:20:22,850I try to explain why I bring up what feels like a difficult topic to them and my memory goes back to when my son was in preschool.23400:20:23,440 --> 00:20:23,770Uh,23500:20:23,780 --> 00:20:33,270it was an early intervention preschool and he had started showing at the age of three some additional um,23600:20:35,340 --> 00:20:37,860characteristics that,23700:20:38,360 --> 00:20:38,660you know,23800:20:38,660 --> 00:20:45,520we later realized were part of the autism and I in a parent teacher meeting.23900:20:45,520 --> 00:20:48,360There were two teachers in me and I said,24000:20:48,360 --> 00:20:51,470have you started seeing these kinds of things for him?24100:20:51,470 --> 00:20:52,860Because we're seeing that a lot.24200:20:53,330 --> 00:20:58,020And I remember vividly that they both looked at each other,24300:20:58,020 --> 00:21:03,700both teachers and didn't say anything and then looked at me and said,24400:21:03,700 --> 00:21:07,050well we'll just start to work on that... they hadn't seen it.24500:21:07,940 --> 00:21:27,030And I knew darrn well that they knew something that I didn't and that it didn't feel to them like it was okay to bring up and then I felt too afraid to push it because I'm like,24600:21:27,040 --> 00:21:27,530oh,24700:21:27,800 --> 00:21:29,810if this is not okay to talk about,24800:21:29,810 --> 00:21:31,350do I really want to know?24900:21:31,840 --> 00:21:33,180But to be honest,25000:21:33,190 --> 00:21:36,850I needed to know I needed that information.25100:21:37,240 --> 00:21:46,050It didn't help me to be in the dark for two more years about what we could have been really understanding better.25200:21:46,940 --> 00:21:51,350Um So when I'm talking to someone in that position,25300:21:52,730 --> 00:21:54,560I may say something like,25400:21:54,940 --> 00:21:55,680you know,25500:21:55,680 --> 00:22:06,460it's because your well being is so important that I will always bring up topics that impact your well being,25600:22:06,460 --> 00:22:20,270even if they're ... they feel tough because you are important and it's important to talk about these things and I'm a person that will do that with you.25700:22:21,540 --> 00:22:30,390Um So I also try to bring it to the table when it's about to be shut down again,25800:22:30,390 --> 00:22:34,360tying it to their their well being,25900:22:34,360 --> 00:22:36,780their worth and my value for them.26000:22:38,350 --> 00:22:41,730I've also I started to think,26100:22:43,340 --> 00:22:44,110you know,26200:22:44,120 --> 00:22:52,020what do I want people to leave a conversation with me with?26300:22:52,020 --> 00:22:53,640What do I want him to leave with?26400:22:53,700 --> 00:22:54,040Well,26500:22:54,050 --> 00:22:57,080I'd like them of course to leave with some information.26600:22:57,080 --> 00:23:09,860But even more so I realize that what is most impactful is I want them to leave knowing that they are valued.26700:23:10,440 --> 00:23:12,990I want them to leave without fear.26800:23:13,540 --> 00:23:18,360I want them to feel empowered and courageous and supported.26900:23:19,540 --> 00:23:24,670So when I am interacting with them about the topic,27000:23:25,240 --> 00:23:28,770am I providing data and information of course,27100:23:30,040 --> 00:23:54,770but I'm very watchful that ultimately my goal is to have them sit with me in this experience and to be able to leave with a sense of freedom and being supported and for them to leave and say,27200:23:55,940 --> 00:24:03,450I feel like I was seen because that's really important.27300:24:05,540 --> 00:24:09,610I want to share a personal experience,27400:24:10,160 --> 00:24:15,950just two to round out this episode.27500:24:17,040 --> 00:24:19,050And um,27600:24:21,540 --> 00:24:35,850I got to the point where I did want to process this with my son's pediatrician When he was about four.27700:24:36,340 --> 00:24:44,050And I came to that on my own by research and watching him.27800:24:44,050 --> 00:24:47,680And um I decided,27900:24:47,830 --> 00:24:48,290you know,28000:24:48,290 --> 00:24:50,250it's time to talk about this.28100:24:50,570 --> 00:25:11,550And my reluctance to talk about it with him was because I know that even physicians get emotionally charged about the topic and I did not want to get into any kind of push or pull and I did not know his opinion.28200:25:11,560 --> 00:25:19,450He was our third pediatrician to be honest and I just did not know him that well.28300:25:20,330 --> 00:25:30,670And because I knew it might be a topic that might get shut down or there might be an emotional charge.28400:25:32,340 --> 00:25:35,220I practiced what I was going to say ahead of time.28500:25:35,230 --> 00:25:36,780Like a lot.28600:25:36,790 --> 00:25:39,510You know how you feel like I'm going in.28700:25:39,520 --> 00:25:41,550I have this one appointment.28800:25:41,560 --> 00:25:43,110I don't know this person,28900:25:43,120 --> 00:25:47,760but I need to make sure I'm thinking clearly enough to get these things across.29000:25:48,640 --> 00:25:54,580So I practiced and I wrote things down and the appointment got rescheduled three times.29100:25:54,590 --> 00:25:57,360So it's one of those things and you're waiting.29200:25:57,740 --> 00:26:02,610And I went to the appointment.29300:26:02,610 --> 00:26:04,760So I was kind of armed with,29400:26:05,540 --> 00:26:08,580you know what I wanted to say?29500:26:08,580 --> 00:26:13,340But I was very watchful about how this would go.29600:26:14,120 --> 00:26:24,600And I also had received so much advice for so long without really getting assistance.29700:26:24,610 --> 00:26:28,540And I didn't want that to be the case either.29800:26:28,790 --> 00:26:32,460I really wanted to talk.29900:26:32,470 --> 00:26:41,860I wanted someone to talk with me about a difficult thing and a complex thing and I wanted um something substantive to do next.30000:26:43,040 --> 00:26:46,370So we discussed a lot of things.30100:26:46,380 --> 00:26:52,850Um He referred us to the autism diagnostic clinic at our local easter seals.30200:26:53,340 --> 00:26:55,990Uh and then that wait list started of course.30300:26:56,540 --> 00:26:59,520Um So did he give me information?30400:26:59,520 --> 00:27:00,310Yes.30500:27:00,320 --> 00:27:01,960Did he give me a plan?30600:27:01,960 --> 00:27:02,940Absolutely.30700:27:02,950 --> 00:27:05,960But when I left that office,30800:27:06,640 --> 00:27:11,210what was life changing for me ... was mostly something else.30900:27:12,440 --> 00:27:20,800And what it was was that at the end of our talk... and I still get emotional about this.31000:27:20,850 --> 00:27:22,390At the end of our talk,31100:27:22,390 --> 00:27:24,110he looked at me and he said,31200:27:24,110 --> 00:27:24,590"I hope,31300:27:24,590 --> 00:27:33,710you know you're a good mom"... and I had practiced what to say in this session.31400:27:33,710 --> 00:27:35,160But I,31500:27:35,300 --> 00:27:36,600my mouth hung open.31600:27:36,600 --> 00:27:57,550I was literally speechless and I realized in that moment that nobody had ever said that to me and I knew darn well that if I asked my friends or my family,31700:27:57,550 --> 00:27:58,800do you think I'm a good mom?31800:27:58,800 --> 00:27:59,320They would say,31900:27:59,320 --> 00:28:01,300well of course you are.32000:28:01,330 --> 00:28:02,860That goes without saying.32100:28:04,440 --> 00:28:06,350But I realized it doesn't,32200:28:06,590 --> 00:28:19,200it doesn't go without saying because we get all these messages that we're doing something wrong or our struggle would be gone if we knew what we were doing.32300:28:21,540 --> 00:28:23,550Nobody had ever said,32400:28:24,740 --> 00:28:25,190I hope,32500:28:25,190 --> 00:28:25,450you know,32600:28:25,450 --> 00:28:36,770you're a good mom that has never left me.32700:28:37,240 --> 00:28:43,700It took no skill to say he didn't have to be an autism expert and he was not.32800:28:44,840 --> 00:28:54,790But when I left the emotional atmosphere had been protected and I left feeling seen and heard and valued.32900:28:55,840 --> 00:29:07,160And that gave me the courage to keep going to talk about something that is complex and emotionally charged.33000:29:07,840 --> 00:29:26,480And sometimes what we need to make people understand is that we see the heart that they have for their kids or we see all the detective work they've done to try to figure themselves out that we see their value.33100:29:26,480 --> 00:29:27,560We see them.33200:29:28,640 --> 00:29:29,660We honor them.33300:29:29,660 --> 00:29:31,060We respect them.33400:29:32,440 --> 00:29:32,970Um,33500:29:32,980 --> 00:29:35,600and that's something we think goes without saying,33600:29:35,600 --> 00:29:36,890but it really doesn't.33700:29:36,900 --> 00:29:45,910And so that's what I mean by navigating emotional atmospheres and protecting emotional atmospheres.33800:29:46,600 --> 00:30:00,420That sometimes the one thing we can do to open up a discussion where people feel free and safe enough to talk about something complex is to say,33900:30:00,420 --> 00:30:05,270I see you and you're important and I'm glad you're here.34000:30:05,460 --> 00:30:06,560And let's talk about it.34100:30:10,240 --> 00:30:15,330I hope you'll join me next time for our final episode in the series,34200:30:15,340 --> 00:30:22,510which is about talking about autism to others when you see autistic characteristics in them.34300:30:22,510 --> 00:30:25,240But but they're not expecting this discussion.34400:30:25,240 --> 00:30:25,860This is,
34500:30:26,040 --> 00:30:26,380you know,34600:30:26,380 --> 00:30:27,720something you want to bring up.34700:30:27,730 --> 00:30:30,660But should I bring it up and how could I bring it up?34800:30:30,940 --> 00:30:40,860Um That will be our next discussion and I will see you then.

Talking About Autism: Personal Journeys

Join Dr. Regan for this first episode of the new series "Talking About Autism." This episode focuses on talking about autism when you are on a journey toward diagnosis and after you have received a diagnosis. 
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Dr. Regan's Resources
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website
Resources for Clinicians
Read the transcript: 
100:00:03,540 --> 00:00:07,840Hello and welcome to this episode of Autism in the Adult.200:00:07,880 --> 00:00:09,020I am your host,300:00:09,020 --> 00:00:10,510Dr Theresa Regan.400:00:10,520 --> 00:00:12,600I'm a neuropsychologist.500:00:12,620 --> 00:00:15,060I am a certified autism specialist,600:00:15,440 --> 00:00:23,750the director of an autism diagnostic clinic for adults in central Illinois, and the mother of a teen and the spectrum.700:00:24,550 --> 00:00:27,630I am starting a new series of episodes today.800:00:28,040 --> 00:00:33,040I think this may end up being a 3-4 part series.900:00:33,040 --> 00:00:34,330We'll see how it goes.1000:00:34,340 --> 00:00:40,060Um and basically the series is going to be called "Talking About Autism."1100:00:40,440 --> 00:00:50,490And this was a listener request... from multiple listeners that have emailed about "How do I talk about this to other people,1200:00:50,490 --> 00:00:52,570whether that's my own diagnosis,1300:00:52,570 --> 00:00:56,720whether that's talking to people that I think may be on the spectrum,1400:00:56,720 --> 00:01:07,320but they haven't been thinking in that direction... and how do I navigate all the emotion that sometimes comes with these kinds of discussions?"1500:01:07,320 --> 00:01:12,460So we're going to take some time to sort through some of those topics.1600:01:13,340 --> 00:01:22,680I believe that this topic is really important, and that's why I have set aside to do a series of episodes about the topic.1700:01:22,690 --> 00:01:31,780I also feel like this is probably one of the most challenging episodes that I've put my mind to here.1800:01:31,790 --> 00:01:59,210And that is because in some ways it's a lot easier to present some research and a list of facts and definitions of terms than to talk about these concepts and experiences and to wrap words around things that are perhaps more personal or experiential is a little more challenging, but worth it I think...1900:01:59,210 --> 00:02:00,260but challenging.2000:02:00,270 --> 00:02:05,960And one of the challenges is probably to make some organization of it.2200:02:06,750 --> 00:02:11,650... So there's some cohesion in what we're talking about in each episode.2300:02:12,140 --> 00:02:13,810So in this first episode,2400:02:13,810 --> 00:02:22,700I'm going to cover the topic of talking about your own autism diagnosis to other people,2500:02:22,700 --> 00:02:25,060and I'm going to cover two things.2600:02:25,060 --> 00:02:37,560One is if you're an individual who's thinking about starting a journey toward evaluation, and you're talking to people about your desire to do this,2700:02:37,940 --> 00:02:38,340um,2800:02:38,340 --> 00:02:45,270some of what we review will have to do with this kind of process ... this starting of that journey.2900:02:45,280 --> 00:02:46,590And also,3000:02:46,590 --> 00:02:50,800then we'll finish by talking about once you have a diagnosis,3100:02:50,810 --> 00:02:51,930um,3200:02:51,940 --> 00:02:54,270who do you talk to about it?3300:02:54,280 --> 00:02:55,960How do you bring it up?3400:02:56,340 --> 00:02:56,890Um,3500:02:56,900 --> 00:03:00,750how does that go after you have a diagnosis?3600:03:01,140 --> 00:03:01,660Um,3700:03:01,660 --> 00:03:13,960so we're going to jump in first with that process that perhaps you're someone who's been thinking about yourself or been thinking about,3800:03:13,970 --> 00:03:14,870um,3900:03:14,880 --> 00:03:16,890perhaps your loved one,4000:03:16,890 --> 00:03:28,020Maybe your partner has been thinking about this and wants you to join them in this journey or you have a child or adolescent that you think may be on the spectrum.4100:03:28,020 --> 00:03:28,360And,4200:03:28,370 --> 00:03:35,550and this is just the beginning of a quest to figure out more information.4300:03:36,840 --> 00:03:43,910One of the really unusual things I think about autism as a diagnosis is that for some reason,4400:03:43,910 --> 00:04:00,060and I don't really understand why, everyone really seems to have an opinion about this topic as far as whether you actually are or are not on the spectrum.4500:04:01,140 --> 00:04:03,120And it's,4600:04:03,130 --> 00:04:03,780again,4700:04:03,780 --> 00:04:09,280mystifying to me because it doesn't seem to be based on any professional qualifications.4800:04:09,740 --> 00:04:10,330Um,4900:04:10,340 --> 00:04:10,770you know,5000:04:10,770 --> 00:04:17,750I think someone that you see at the grocery store seems just as adamant about that as your grandmother,5100:04:17,750 --> 00:04:19,390who's just as adamant,5200:04:19,400 --> 00:04:21,860um as your therapist and so forth.5300:04:22,540 --> 00:04:33,460Um it's mystifying in the sense that if someone told me they had a cardiac uh difference that was causing some arrhythmia or whatever,5400:04:33,840 --> 00:04:36,020I would never think to say no,5500:04:36,020 --> 00:04:37,180you don't.5600:04:37,320 --> 00:04:39,490I'm not a cardiologist.5700:04:39,500 --> 00:04:42,360I don't know if you do or not,5800:04:42,940 --> 00:04:44,640and um,5900:04:44,650 --> 00:04:50,840that just doesn't carry over to this neuro behavioral developmental condition.6000:04:50,840 --> 00:04:51,260So,6100:04:52,340 --> 00:05:06,610autism is a physical, neurologic state where the genetic code and the process of development of the brain has produced this less than typical neurology.6200:05:06,610 --> 00:05:10,610So 2% of people 6300:05:10,620 --> 00:05:17,250in our population, and that is a percentage that's pretty stable across age groups,6400:05:17,250 --> 00:05:18,250across country,6500:05:18,250 --> 00:05:24,220across research study ... that 2% of people will present with this neurology.6600:05:24,220 --> 00:05:26,650And so it's not very common.6700:05:27,340 --> 00:05:28,230Um,6800:05:28,240 --> 00:05:34,130and yet everyone seems to feel like they could recognize it... and I'm not,6900:05:34,140 --> 00:05:35,770I'm not sure where that comes from,7000:05:35,770 --> 00:05:48,970but that will probably be something you encounter if you say "I've been wondering if I'm on the autism spectrum" or "I've been wondering if my child is on the autism spectrum."7100:05:48,970 --> 00:05:55,830And you'll probably get some immediate responses from people that that is not the case.7200:05:55,830 --> 00:05:57,950And that could range from,7300:05:58,340 --> 00:05:58,790you know,7400:05:58,790 --> 00:06:00,860the physician that you see.7500:06:00,860 --> 00:06:02,910It could be a therapist.7600:06:02,910 --> 00:06:07,250It could be any range of people.7700:06:09,040 --> 00:06:20,860The reason that I bring up this type of encounter is that I think it's often not very helpful because it's non specific.7800:06:21,440 --> 00:06:27,290Um there's often not a reason given and it's not really based in data,7900:06:27,290 --> 00:06:38,160it's kind of based on this general gut feeling or what people expect autism to look like in their neighborhood or their family or their classroom or whatever.8000:06:38,640 --> 00:06:39,110Um,8100:06:39,120 --> 00:06:42,260but it's not really based on substance.8200:06:42,840 --> 00:06:54,860And one of the ways that I have found to kind of defuse that or at least ask for some substance is to say in response to that,8300:06:55,440 --> 00:06:55,860"Oh,8400:06:55,860 --> 00:06:56,390okay.8500:06:56,390 --> 00:06:59,410What criteria don't you think I meet?"8600:07:01,040 --> 00:07:04,320And whenever I've said that,8700:07:04,320 --> 00:07:13,660I've never had anyone who knew the criteria that actually were responding to that or giving this input that autism is incorrect.8800:07:14,140 --> 00:07:15,760Um so again,8900:07:16,440 --> 00:07:20,790unusual that people feel that strongly about it,9000:07:21,240 --> 00:07:22,160um,9100:07:22,540 --> 00:07:25,140and will produce that,9200:07:25,150 --> 00:07:25,800um,9300:07:26,040 --> 00:07:27,360that opinion.9400:07:27,740 --> 00:07:33,900But you can kind of diffuse that if you ask them for more specific data,9500:07:33,910 --> 00:07:35,770more specific information,9600:07:35,780 --> 00:07:36,500um,9700:07:36,500 --> 00:07:39,680you can kind of point out ... and sometimes it's been interesting.9800:07:39,680 --> 00:07:40,290So,9900:07:40,300 --> 00:07:41,150you know,10000:07:41,150 --> 00:07:45,240one person might say to me well I'm a counselor and I'll say,10100:07:45,240 --> 00:07:45,480yeah,10200:07:45,480 --> 00:07:47,940I know... a lot of people don't know the criteria though.10300:07:47,940 --> 00:07:51,190So what criteria don't you think this person meets?10400:07:51,640 --> 00:07:52,920And then she said,10500:07:52,920 --> 00:07:53,070well,10600:07:53,070 --> 00:07:55,060I guess I don't really know the criteria.10700:07:55,840 --> 00:07:58,060So it just helps diffuse that.10800:07:58,070 --> 00:07:59,760And I wouldn't recommend,10900:08:00,340 --> 00:08:00,820you know,11000:08:00,820 --> 00:08:03,580going in guns blazing or anything,11100:08:03,660 --> 00:08:05,680but just in a very matter of fact,11200:08:05,690 --> 00:08:10,990calm way that you'd like their input if it's based in the data,11300:08:10,990 --> 00:08:15,550what kind of observations are they using to say that,11400:08:17,440 --> 00:08:17,880you know,11500:08:17,880 --> 00:08:31,410Another comment that I find non specific and I find this comment to be kind of dismissing11600:08:31,410 --> 00:08:44,410I guess of someone's journey that they're taking toward an evaluation and what can happen unfortunately is the person will say,11700:08:44,410 --> 00:08:44,630"Well,11800:08:44,630 --> 00:08:46,120why do you think that?"11900:08:46,130 --> 00:08:55,960And you'll start to share some of your thoughts and experiences and then you're a bit trapped because they may say,12000:08:56,340 --> 00:08:56,780"Oh yeah,12100:08:56,780 --> 00:08:57,760but I do that too.12200:08:57,760 --> 00:08:59,170And I'm not autistic,12300:08:59,180 --> 00:09:00,560everybody does that."12400:09:01,240 --> 00:09:10,350Um and it just doesn't leave you in any better place than you were.12500:09:10,360 --> 00:09:10,680Again,12600:09:10,680 --> 00:09:12,760it doesn't add anything of substance.12700:09:12,760 --> 00:09:14,350It doesn't clear anything up.12800:09:14,840 --> 00:09:23,260Um And so one thing I find helpful to mention in this kind of dynamic would be to say,12900:09:23,840 --> 00:09:24,610"Well,13000:09:24,620 --> 00:09:42,960that would be like saying that because we all forget things that Alzheimer's dementia isn't really impactful to people, and something may be impactful to an individual because of how frequently it happens or how much distress it causes.13100:09:43,340 --> 00:09:44,370Um So,13200:09:44,380 --> 00:09:52,200so that's the thought process I'm using about my own experiences in the end.13300:09:52,200 --> 00:09:56,560I would never have your goal be ah,13400:09:56,940 --> 00:10:00,390to convince everyone that you come in contact with,13500:10:00,390 --> 00:10:02,690that the journey is relevant.13600:10:02,700 --> 00:10:18,650I think that autism is just such a misunderstood concept that you're going to have people who just are not in the same place that you are, and to go back and forth feeling like your role is to convince people,13700:10:18,660 --> 00:10:19,460um,13800:10:19,460 --> 00:10:21,060is probably not,13900:10:21,640 --> 00:10:22,270um,14000:10:22,280 --> 00:10:24,660not a role that really brings fruit.14100:10:25,220 --> 00:10:33,800And so I would consider letting go that agenda if that's your goal,14200:10:33,860 --> 00:10:36,260that you'll be able to convince everybody.14300:10:39,440 --> 00:10:40,950And interestingly,14400:10:40,950 --> 00:10:44,680as with other complex life situations,14500:10:44,680 --> 00:10:53,100what I find personally is that sometimes the people I expect to be there for me in this situation,14600:10:53,110 --> 00:10:57,740whether that's a celebration or whether I'm grieving about something,14700:10:57,750 --> 00:10:58,690um,14800:10:58,700 --> 00:10:59,770a wedding,14900:10:59,770 --> 00:11:00,900a funeral,15000:11:00,910 --> 00:11:01,640uh,15100:11:01,650 --> 00:11:02,630a promotion,15200:11:02,630 --> 00:11:06,240a move ... sometimes I expect,15300:11:06,250 --> 00:11:06,930you know,15400:11:06,930 --> 00:11:17,150these closest people to be really with me and a lot of times that's not necessarily the case and we may like it to be that way,15500:11:17,540 --> 00:11:23,440but in life I just find that there will always be people that step up that surprise you.15600:11:23,450 --> 00:11:23,690Like,15700:11:23,690 --> 00:11:24,150wow,15800:11:24,150 --> 00:11:26,500I wouldn't have expected you to be the one,15900:11:26,510 --> 00:11:27,320you know,16000:11:27,320 --> 00:11:30,190to kind of step up and meet me in this place.16100:11:30,200 --> 00:11:36,860But I did expect this other person to be able to support me and they're really not able to do that.16200:11:37,140 --> 00:11:47,570So sometimes the journey does involve letting go of some expectations and giving other people the freedom to be in a different place,16300:11:47,580 --> 00:11:56,350allowing yourself to grieve that you're not on the same journey that everyone else is ... that other people don't appreciate that part of your journey.16400:11:57,040 --> 00:12:05,960Um but not getting into the trap of trying to convince people who just aren't really there.16500:12:08,640 --> 00:12:23,850Another comment that I feel is dismissive and very general and non substantive is a comment people make ... I suppose to be um supportive,16600:12:24,340 --> 00:12:29,330but it dismisses some of the complexity of the journey,16700:12:29,340 --> 00:12:30,250I think.16800:12:30,260 --> 00:12:32,400And that is the comment I hear a lot,16900:12:32,400 --> 00:12:32,980which is,17000:12:32,980 --> 00:12:33,410"Well,17100:12:33,420 --> 00:12:36,160I guess everyone's a little autistic these days.17200:12:37,040 --> 00:12:39,250Apparently we're all autistic."17300:12:39,260 --> 00:12:39,580You know,17400:12:39,580 --> 00:12:41,260that kind of comment.17500:12:41,940 --> 00:12:49,050Um actually 2% of individuals meet full criteria for the autism spectrum.17600:12:49,440 --> 00:12:50,100Um,17700:12:50,110 --> 00:12:57,360so it's not this popular fad that everyone's getting diagnosed with.17800:12:57,840 --> 00:13:06,360Um I think there's a lot of emphasis on diagnosis now because we're realizing how many people have been missed or misdiagnosed.17900:13:06,840 --> 00:13:07,280Um,18000:13:07,290 --> 00:13:09,490but everyone's not autistic.18100:13:09,500 --> 00:13:13,130Uh this is an unusual neurologic pattern.18200:13:13,140 --> 00:13:14,490It's unique.18300:13:14,500 --> 00:13:21,230Uh it's not that common and it's really worth paying attention to and realizing,18400:13:21,240 --> 00:13:21,770you know,18500:13:21,770 --> 00:13:23,250when that's present.18600:13:26,000 --> 00:13:38,960Some people will advise that you don't pursue the journey of evaluation based on their premise that the diagnosis won't make a difference anyway.18700:13:39,440 --> 00:13:42,810And I've heard that from physicians,18800:13:42,810 --> 00:13:45,760from psychologists. psychiatrists, teachers,18900:13:46,240 --> 00:13:46,770um,19000:13:46,780 --> 00:13:49,930all kinds of people.19100:13:49,930 --> 00:13:56,050So I don't think it's really specific to any group of people or generation,19200:13:56,050 --> 00:14:11,160but I think it's just a revelation that in our culture... in our communities... we're really not to the point where people understand what a difference it does make and what a difference it should make.19300:14:11,540 --> 00:14:15,350So um if someone says that ... that probably,19400:14:15,740 --> 00:14:26,030well I would say it does reveal that they don't understand the neurology of autism well enough that they can really comment on your situation.19500:14:26,040 --> 00:14:35,960And again it may be your psychiatrist who doesn't or ... and it's not um a criticism of any one person.19600:14:36,040 --> 00:14:44,630I'm just commenting I think on the state of our community as far as our awareness of what the neurology looks like,19700:14:44,630 --> 00:14:54,150what impact it has on you or people around you and all the things that do make a difference about knowing that.19800:14:54,640 --> 00:14:59,080Um So it should direct our expectations,19900:14:59,080 --> 00:14:59,860our goals,20000:14:59,860 --> 00:15:03,100our understanding of the why of behavioral patterns,20100:15:03,110 --> 00:15:05,020how to get the best outcomes,20200:15:05,020 --> 00:15:06,600how to support each other.20300:15:06,610 --> 00:15:16,310Um because at a very basic level when you're going on a journey to um have an evaluation for autism,  20400:15:16,310 --> 00:15:29,450you're trying to figure out if your behavioral patterns in certain areas reflect neurology or whether they reflect more traditional mental health issues.20500:15:29,450 --> 00:15:39,460And I know that those two categories are not clean cut categories but for the purpose of this basic discussion,20600:15:39,470 --> 00:15:44,340I'm going to point out those 2 categories.20700:15:44,340 --> 00:15:55,380So I'm going to give an analogy that I hope will demonstrate why it does make a difference to understand if parts of a behavioral pattern have a neurologic base.20800:15:55,390 --> 00:16:03,410So let's consider that a psychologist has two clients coming in that day and they both have the same concern.20900:16:03,440 --> 00:16:08,830They both have a memory concern, and the psychologist could think,21000:16:08,830 --> 00:16:11,040"Well it's the same concern.21100:16:11,040 --> 00:16:22,460So I'm just going to use the same treatment for both patients since we're really just wanting to improve memory regardless of the reason for the memory difficulty."21200:16:23,340 --> 00:16:23,980Well,21300:16:23,990 --> 00:16:24,480let's say,21400:16:24,480 --> 00:16:27,400another psychologist has the same thing.21500:16:27,400 --> 00:16:29,920They have to people coming in but they decide,21600:16:29,930 --> 00:16:30,470you know,21700:16:30,480 --> 00:16:33,700it really does matter what the reason is.21800:16:33,710 --> 00:16:39,640And so I'm going to do an assessment to see -- why are these people having memory difficulties?21900:16:39,650 --> 00:16:42,010And the first client of the day,22000:16:42,010 --> 00:16:50,570the psychologist does the assessment and they see a cognitive pattern that's very classic for an alzheimer's dementia,22100:16:51,140 --> 00:16:54,390which means that the hippocampus is not functioning well,22200:16:54,400 --> 00:16:56,670there's a disease process here.22300:16:56,680 --> 00:17:03,650It really looks like it's going to be degenerative, and the memory loss is very based in neurology.22400:17:05,340 --> 00:17:07,900And the second client who comes in,22500:17:07,910 --> 00:17:22,860the psychologist does the assessment and realizes after the evaluation that their memory loss is due to traumatic experiences... that they've had so much trauma in their life that they're dissociating,22600:17:23,140 --> 00:17:41,960that they are shutting down their awareness in order to just go on autopilot and that's why they're losing chunks of their day and they forget parts of their childhood and their mind is just not online all of the time because it's trying to protect itself from all these strong emotions.22700:17:44,240 --> 00:18:03,720So at a basic level the treatment needs to be different ... the conceptualization needs to be different, and the support that we offer people needs to be different - based on whether there's been this more mental health path to these symptoms or whether there is some neurologic base.22800:18:04,140 --> 00:18:17,040So I'm not going to recommend that the Alzheimer's patient come into psychodynamic therapy every day to work on trauma work so that their memory will improve.22900:18:17,050 --> 00:18:21,970I need to understand what the base of the concern is.23000:18:21,970 --> 00:18:25,160So I understand what's likely to be helpful,23100:18:25,540 --> 00:18:31,620but I very well may recommend that the second client engage in trauma work,23200:18:31,620 --> 00:18:32,860whatever that looks like.23300:18:33,340 --> 00:18:48,390Uh and that should help this pattern of dissociating and help her be more aware and present psychologically in the moment and cut down on that loss of memory. Now,23400:18:48,390 --> 00:18:51,240certainly Alzheimer's and autism are not the same,23500:18:51,240 --> 00:18:51,710right?23600:18:51,720 --> 00:18:57,160Autism is developmental and Alzheimer's is acquired.23700:18:57,840 --> 00:19:00,080Alzheimer's is degenerative,23800:19:00,090 --> 00:19:01,220it gets worse.23900:19:01,230 --> 00:19:07,370Um and autism is based on how the brain was wired during development.24000:19:07,370 --> 00:19:10,770It's not a degenerative process,24100:19:11,640 --> 00:19:35,460but you can see this general concept of figuring out if there's a part of something going on that's neurologic versus more traditional mental health issue, and so I feel ... I feel like that in itself can be a really important part of the journey toward figuring out if autism is present.24200:19:35,940 --> 00:19:41,840So let me offer one additional example in this ... ,24300:19:41,840 --> 00:20:04,170I'm going to take little Johnny who's in kindergarten, and mother comes to talk with the teacher and gets to hear that "Unfortunately, Johnny is really struggling with his color recognition, and all of his peers are really taking off on recognizing colors and naming them and organizing them into hues and patterns.24400:20:04,170 --> 00:20:09,200And boy, little Johnny is not up to speed in that area.24500:20:09,210 --> 00:20:15,720And so what the teacher recommends is that she's going to repeat, for Johnny,24600:20:15,720 --> 00:20:24,760why it's important to work hard to learn his colors because it does impact various parts of his life.24700:20:25,140 --> 00:20:29,990So explaining ... a lot of explanation of why this is important.24800:20:30,000 --> 00:20:31,950She's gonna ask Johnny if ...24900:20:31,960 --> 00:20:42,450if he agrees that this is an important thing, and he says yes. And so she's going to add extra homework, extra tutoring about color recognition.25000:20:42,540 --> 00:20:54,290She's going to ask the parents to give extra work and help him at home and maybe set up um a prize versus consequences kind of thing.25100:20:54,290 --> 00:20:59,370Like if you can advance in this area up to your peers,25200:20:59,380 --> 00:21:01,600you can get this extra present.25300:21:01,600 --> 00:21:08,060But if you can't, then you can't go on the trip at the end of the year with your class.25400:21:08,740 --> 00:21:12,060So they've set this whole thing up, and every year,25500:21:12,060 --> 00:21:13,590the same thing is repeated.25600:21:13,590 --> 00:21:19,670Boy, Johnny needs to work harder on his color recognition. By middle school,25700:21:19,670 --> 00:21:23,120Johnny has this learned hopelessness...25800:21:23,120 --> 00:21:25,980That no matter how hard he tries,25900:21:25,990 --> 00:21:30,890he's always falling short of people's expectations in this area.26000:21:30,890 --> 00:21:36,260And instead of being shamed and embarrassed about it anymore,26100:21:36,260 --> 00:21:37,330he starts to say,26200:21:37,330 --> 00:21:38,110"You know what?26300:21:38,120 --> 00:21:40,400It's because I don't even care about colors,26400:21:40,480 --> 00:21:42,170I don't care about this."26500:21:42,540 --> 00:21:50,720And there starts to be this really difficult dynamic now between Johnny and his parents and his teachers,26600:21:50,730 --> 00:21:52,050a lot of strain,26700:21:52,050 --> 00:21:56,290some acting out. And all of a sudden, in middle school,26800:21:56,290 --> 00:22:02,030someone thinks to see if Johnny is colorblind. Lo and behold,26900:22:02,040 --> 00:22:08,760he has color blindness, and all this time we've been telling him to work harder.27000:22:10,440 --> 00:22:15,030We've been lecturing him about why it's important to do better.27100:22:15,140 --> 00:22:18,060We've been asking him if he agrees that it's important.27200:22:18,740 --> 00:22:19,240Um,27300:22:19,240 --> 00:22:31,960We've been tutoring him, all to no avail, and here we were asking him to do something he's not capable of doing at the same level as his peers.27400:22:32,540 --> 00:22:37,930And that is a difficulty because we've really uh,27500:22:37,940 --> 00:22:39,870set up this expectation.27600:22:39,870 --> 00:22:44,950He has this learned hopelessness that he just can't meet people's expectations.27700:22:44,960 --> 00:23:01,570The relationship between him and the teachers and the parents has become very strained and it could have been avoided if we understood that there's really a physical limitation that his eyes just can't process that information.27800:23:01,570 --> 00:23:07,190So asking him to work harder is not going to be something that is helpful.27900:23:07,190 --> 00:23:09,350It's not going to bring about a better outcome.28000:23:09,620 --> 00:23:11,800In fact it's making things worse.28100:23:12,640 --> 00:23:18,700So now let's say you have gone on this journey and you do have a diagnosis.28200:23:19,740 --> 00:23:23,360Um One of the questions that people then ask is well,28300:23:25,140 --> 00:23:25,740you know,28400:23:25,740 --> 00:23:29,150I don't ... I don't know who I want to talk to about this.28500:23:29,150 --> 00:23:30,860Do I have to tell everybody?28600:23:31,240 --> 00:23:40,670Um In fact some people may say I don't even want to go on that journey toward evaluation ... because my partner wouldn't understand that diagnosis.28700:23:40,680 --> 00:23:48,190And in reality... this is part of your medical record,28800:23:48,190 --> 00:23:59,370part of your um diagnostic history that you do not have to share with people outside of your medical care.28900:23:59,370 --> 00:24:02,350So if you have a partner,29000:24:02,740 --> 00:24:05,770you do not have to reveal that to them.29100:24:06,340 --> 00:24:09,400If you don't want to tell your family,29200:24:09,400 --> 00:24:12,100if you don't want to tell your teachers,29300:24:12,110 --> 00:24:17,690you have discretion about who you reveal too.29400:24:17,700 --> 00:24:23,560And I am speaking to you about the interpersonal aspects of revealing.29500:24:24,040 --> 00:24:34,810Um I'm not giving any legal or policy advice on anything about revealing in certain situations.29600:24:34,820 --> 00:24:36,990But interpersonally,29700:24:37,000 --> 00:24:43,060you don't have to reveal everything about yourself to every person in your life.29800:24:44,640 --> 00:24:52,460There may be reasons that you may decide to discuss your diagnosis with someone or some group of people.29900:24:52,940 --> 00:25:07,260And one of the reasons may be that you may want to explain who you are and how you're wired and what your needs are to other people and that may make life just easier with them.30000:25:08,280 --> 00:25:15,540And you can make the explanation nonspecific or specific.30100:25:15,540 --> 00:25:20,390And what I mean by that is you can use the word autism or not use the word autism,30200:25:20,940 --> 00:25:23,620but in some instances you might want to say,30300:25:23,620 --> 00:25:23,920you know,30400:25:23,920 --> 00:25:27,390I've really learned that my system needs X,30500:25:27,390 --> 00:25:29,900y and Z to feel calm.30600:25:29,900 --> 00:25:32,720So I'm gonna go take a break now,30700:25:32,720 --> 00:25:34,060if that's okay with you,30800:25:34,540 --> 00:25:36,660or you might want to say,30900:25:36,670 --> 00:25:37,380you know,31000:25:37,380 --> 00:25:41,770I've learned that I kind of miss sometimes what my friends need.31100:25:41,770 --> 00:25:42,730And so,31200:25:42,740 --> 00:25:43,250you know,31300:25:43,250 --> 00:25:45,700if you said something and it's just gone over my head,31400:25:45,700 --> 00:25:47,370please tell me again,31500:25:47,370 --> 00:25:50,170I really don't want to miss what your needs are.31600:25:50,540 --> 00:25:51,020Um,31700:25:51,030 --> 00:25:58,070so that's kind of a nonspecific way without using the word autism,31800:25:58,070 --> 00:26:05,760that you can share what you've learned about yourself in that context and that could make your relationships,31900:26:06,340 --> 00:26:07,120um,32000:26:07,130 --> 00:26:08,860really run more smoothly.32100:26:10,640 --> 00:26:21,380Another reason that someone may want to discuss their diagnosis may be that they might want to be someone that advocates for people on the spectrum,32200:26:21,380 --> 00:26:32,310that they might want to be part of creating an atmosphere that normalizes discussions about autism and that supports autistic individuals.32300:26:32,320 --> 00:26:37,670So they may decide that part of their own journey as personal to them,32400:26:38,540 --> 00:26:41,840that that may be part of how they approach things,32500:26:41,840 --> 00:26:43,960at least during a season of their life.32600:26:44,640 --> 00:26:45,160Um,32700:26:45,160 --> 00:26:45,640so,32800:26:45,640 --> 00:26:52,670in an effort to create an atmosphere of discussion and inviting discussion and advocating,32900:26:53,040 --> 00:26:57,290they may give this personal kind of,33000:26:57,300 --> 00:26:57,860um,33100:26:58,240 --> 00:27:01,180revelation to people about their own experience,33200:27:01,190 --> 00:27:02,480what they've learned,33300:27:02,480 --> 00:27:05,560how they can help support individuals on the spectrum.33400:27:07,440 --> 00:27:11,550I had a situation come up like that in my own life,33500:27:12,340 --> 00:27:23,950after my son had been diagnosed at the age of five at our local easter seals and I was at a Children's event and my son was out there,33600:27:23,960 --> 00:27:24,650um,33700:27:24,660 --> 00:27:36,860taking a certain kind of lesson in a group and another mother was sitting next to me and I had seen her son there a few times before and in watching his behavior33800:27:36,860 --> 00:27:38,770I did think to myself,33900:27:38,780 --> 00:27:42,310I wonder if his parents know he's on the spectrum.34000:27:42,310 --> 00:27:44,980It was pretty clear to me,34100:27:45,540 --> 00:27:46,030um,34200:27:46,030 --> 00:27:51,720for a variety of reasons... and one day she just happened to be sitting next to me.34300:27:51,720 --> 00:27:56,290We hadn't sat next to each other before and she,34400:27:56,300 --> 00:27:58,450I actually just said to her,34500:27:58,450 --> 00:27:58,830how,34600:27:58,840 --> 00:28:01,060how's your son enjoying this?34700:28:01,540 --> 00:28:07,720I asked about how he likes school and my intention was not to bring up the,34800:28:07,730 --> 00:28:09,350the diagnostic issue.34900:28:09,360 --> 00:28:11,700My intention was just to be polite.35000:28:11,710 --> 00:28:13,880So how does your son like school?35100:28:13,880 --> 00:28:14,980What is he like best?35200:28:14,980 --> 00:28:16,080How you know?35300:28:16,090 --> 00:28:16,880Um,35400:28:16,890 --> 00:28:18,930and in that process,35500:28:18,930 --> 00:28:19,650she said,35600:28:19,660 --> 00:28:20,060oh,35700:28:20,060 --> 00:28:21,550he's doing really well,35800:28:21,640 --> 00:28:24,340he's a little behind with some social things,35900:28:24,340 --> 00:28:26,970but I'm sure that will mature quickly.36000:28:27,540 --> 00:28:28,010Um,36100:28:28,010 --> 00:28:31,470and then she said a really,36200:28:31,480 --> 00:28:37,890there was a really pivotal moment for me and I was caught off guard and she said,36300:28:38,440 --> 00:28:39,160actually,36400:28:39,160 --> 00:28:45,260his teachers had the gall to suggest he's on the autism spectrum.36500:28:46,340 --> 00:28:54,110And I had that kind of moment where you feel like everything sits still and things are moving in slow motion.36600:28:54,110 --> 00:28:54,740But you know,36700:28:54,740 --> 00:28:56,670you have to respond or,36800:28:56,680 --> 00:28:59,360or your mind is trying to think of something to say.36900:29:00,740 --> 00:29:02,930And I thought to myself,37000:29:02,940 --> 00:29:14,860I know I don't have to talk about our experience with her, and I'm not feeling very generous in this moment,37100:29:15,440 --> 00:29:17,300but I said,37200:29:17,300 --> 00:29:17,610you know,37300:29:17,610 --> 00:29:19,280if I don't say anything,37400:29:20,430 --> 00:29:25,350I feel like I'm going to be agreeing that this is not something we can talk about.37500:29:26,340 --> 00:29:29,440And that's not what I believe and that's not the atmosphere37600:29:29,440 --> 00:29:35,280I want to create ... that if I don't reveal our experience,37700:29:36,140 --> 00:29:40,760I am agreeing that it takes gall to suggest that.37800:29:41,940 --> 00:29:44,160And I also didn't want to shame her.37900:29:44,740 --> 00:29:47,430I know what it's like to be a struggling mom.38000:29:48,140 --> 00:29:48,770I don't,38100:29:49,540 --> 00:29:50,110I'm not,38200:29:50,120 --> 00:29:52,990I wasn't in the same place that she is,38300:29:53,540 --> 00:29:57,100but I did not want to wound her or shame her.38400:29:57,330 --> 00:30:03,060And so I ended up saying in a very matter of fact tone,38500:30:03,070 --> 00:30:03,390"Oh,38600:30:03,390 --> 00:30:05,120my son's on the spectrum.38700:30:05,130 --> 00:30:08,580We got diagnosed at easter seals and you know,38800:30:08,580 --> 00:30:10,670that was one of the best things we ever did.38900:30:10,680 --> 00:30:14,650His therapies were so helpful and you know,39000:30:14,650 --> 00:30:17,800that was really something that was good for us."39100:30:19,040 --> 00:30:21,120And then I just said to her,39200:30:21,130 --> 00:30:21,640"You know,39300:30:21,640 --> 00:30:26,910whatever your son needs to be doing well and uh,39400:30:26,920 --> 00:30:28,660feeling good and connecting with people,39500:30:28,660 --> 00:30:31,060I just hope he gets that ... whatever that is."39600:30:33,540 --> 00:30:39,960So sometimes we make decisions about revelation based on what kind of atmosphere we want to promote.39700:30:43,690 --> 00:30:49,760Sometimes we might want to discuss our diagnosis to formalize something in a record,39800:30:50,140 --> 00:30:58,650like a medical record or a school or work record where we're asking for specific accommodations or we're asking,39900:30:58,660 --> 00:30:59,350um,40000:30:59,740 --> 00:31:00,530for,40100:31:00,540 --> 00:31:01,390uh,40200:31:01,400 --> 00:31:03,000an intervention like,40300:31:03,010 --> 00:31:03,580um,40400:31:03,590 --> 00:31:08,250occupational therapy or something that's going to be directed towards that need.40500:31:08,250 --> 00:31:10,420So sometimes we'll um,40600:31:10,430 --> 00:31:17,170discuss that with a team of people working on giving us specific interventions or accommodations.40700:31:19,140 --> 00:31:23,410And we also may wish to help someone specific.40800:31:23,420 --> 00:31:25,470So maybe we've,40900:31:25,480 --> 00:31:26,070you know,41000:31:26,080 --> 00:31:29,990we've revealed the diagnosis to some people close to us,41100:31:29,990 --> 00:31:38,270but most people don't know, and you run across someone that's really struggling, and you really think you get it.41200:31:38,340 --> 00:31:39,020You know,41300:31:39,030 --> 00:31:47,170you think I know what that is and I was so helped by this that maybe my experience might help them.41400:31:47,540 --> 00:31:57,850So you may choose in that moment or with that person to kind of talk about your own experience of diagnosis and why that made a difference for you.41500:31:57,850 --> 00:32:00,800And you might say something like,41600:32:00,810 --> 00:32:01,220you know,41700:32:01,220 --> 00:32:03,330"I don't know if that's anything you've considered,41800:32:03,330 --> 00:32:05,160but it may be something to think about."41900:32:08,140 --> 00:32:17,360And the last reason I'm going to put out there is just that sometimes when you are in an increasingly close relationship,42000:32:17,370 --> 00:32:20,450whether it's a friendship or um,42100:32:20,460 --> 00:32:22,040a partnership,42200:32:22,050 --> 00:32:23,560a romantic partnership,42300:32:24,540 --> 00:32:26,100part of growing closer,42400:32:26,100 --> 00:32:27,180over time,42500:32:28,140 --> 00:32:28,670you know,42600:32:28,670 --> 00:32:31,400maybe you've connected over favorite interests,42700:32:31,400 --> 00:32:33,470maybe you've connected in a group,42800:32:33,480 --> 00:32:39,260maybe it's been a year and you're getting closer and (the time frame isn't important,42900:32:39,260 --> 00:32:53,170I'm just trying to emphasize that there's been this growth together) ... And part of encouraging even more intimacy and closeness is self revelation.43000:32:53,640 --> 00:33:03,440So you start to reveal over time things that have really impacted you or things that you've been through and what your journey has been like.43100:33:03,450 --> 00:33:09,350So someone might share with their increasingly close friend what it was like when their mom died.43200:33:09,840 --> 00:33:15,060Or someone might share their diagnostic journey towards an autism diagnosis.43300:33:15,440 --> 00:33:23,280So sometimes it's part of this growing intimacy that self revelation brings whatever that revelation is.43400:33:23,290 --> 00:33:27,770And in this case it could have to do with the diagnosis of autism.43500:33:30,140 --> 00:33:34,760Those are my scattered thoughts um,43600:33:34,770 --> 00:33:42,800about talking about a journey toward diagnosis or an existing diagnosis with other people.43700:33:42,810 --> 00:33:48,300And I hope that these have provided some food for thought.43800:33:48,310 --> 00:33:48,930Um,43900:33:48,930 --> 00:34:07,440some examples of things that you might say or might avoid or might consider. The next episode is going to focus on bringing up the conversation or the topic with people that you think may be on the spectrum that you'd like to help,44000:34:07,450 --> 00:34:10,520but they really don't see this coming.44100:34:10,530 --> 00:34:12,660You don't ... you're not sure how they're gonna react,44200:34:12,660 --> 00:34:13,850You don't know what to say.44300:34:14,240 --> 00:34:19,260So that will be this next episode and the final episode,44400:34:19,270 --> 00:34:25,260I envision being about dealing with strong emotions um,44500:34:25,270 --> 00:34:28,280in conversation about autism.44600:34:28,280 --> 00:34:34,110So one of the things I've really experienced and learned is that people have strong,44700:34:34,110 --> 00:34:39,540strong emotions for a variety of very legitimate reasons.44800:34:39,550 --> 00:34:42,310And sometimes dealing with the emotions44900:34:42,310 --> 00:34:48,550in the conversation can be even more difficult than figuring out the words to say.45000:34:48,940 --> 00:34:49,560Um,45100:34:49,560 --> 00:34:54,410and sometimes you never know what kind of emotion is going to come on the scene.45200:34:54,420 --> 00:34:55,260Um,45300:34:55,270 --> 00:35:03,890and so I'm going to kind of focus on this emotional exchange during the third episode of this series,45400:35:03,890 --> 00:35:05,860Talking About Autism.