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: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
Read the Transcript:
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Hello and welcome to this episode of Autism in the Adult podcast,
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I am your host,
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Dr Theresa Regan.
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I am a neuropsychologist.
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The director of an adult diagnostic autism clinic in central Illinois, and I'm the mother of a teen on the autism spectrum.
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We 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.
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And our first episode in this series was that foundational information about shifting characteristics,
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shifts in how the individual experiences the characteristics and how those around them experience or are impacted by these autistic characteristics.
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Today,
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in the second episode,
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we'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.
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one 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,
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the development of the brain,
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the biochemistry of the body and the brain also... things like the environment.
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So what kinds of demands are in the environment,
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what kind of assistance and structure are within that environment at the time.
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Things 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.
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Let's start with the physical person during adolescence.
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So 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,
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you've got a lot of height,
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the voice changes etcetera.
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And the person at the end of that whole cycle has a different body in many respects.
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And 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.
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And I've had clients say,
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you know,
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this is not my body.
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I really want my 10 year old body back because that was me.
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It 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.
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I just don't like it.
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I want to go back in time and to have my original body,
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the body that fits my personhood.
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Sometimes this will come out where people say I as an adult,
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focused a lot on staying at the weight of 118 because that's what my weight was when I stopped getting taller.
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So when I graduated from high school,
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I was 118 And I really can't tolerate being 120.
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I can't tolerate being 100 and 10.
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I 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.
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This stress related to unexpected or unplanned changes in the body,
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can really happen across lots of life seasons.
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So adolescence is certainly a big one,
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pregnancy is a big one,
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aging is a big one.
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we can all relate to wanting our younger body back and for the individual on the spectrum,
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the 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.
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The brain also has been doing a lot of development during this period of time.
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And as we talked about in the first episode,
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the brain itself does not stop developing as a part of the body until about 20, 21,
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that early adulthood phase.
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So the brain is not grown,
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is not fully developed until the person is really out of high school and starting that young adulthood phase,
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This development of the brain includes things like thinking at a different level,
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challenging what you've always been told,
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trying to graduate into more abstract ways of thinking conceptualized thinking.
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So 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.
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The chemistry of the body and the brain also shifts.
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And so we talked about this before,
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that hormones are meant to change the body and the brain and they do and the impact can really feel quite dramatic,
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especially during adolescence,
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where sometimes that's just this period of the perfect storm for the most centered individual.
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You know,
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every person probably has stories about adolescents when they were tearful or yelling or or stomping off,
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jumping on their bike,
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riding away whatever the drama of that period of time may have been for you,
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you can relate to that feeling that this hormonal storm for someone that already has some dysregulation difficulty can also be pretty profound.
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So it's even harder for me to stay centered.
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It'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,
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a four part series if you want to know more about that.
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But the ability to stay centered and even it's just more difficult once those hormones kick in.
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And even more so for the person who struggled to begin with,
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it's also true that the body and the brain become sexualized during that time.
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And 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.
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You know,
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it's just not.
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this is the time of life anymore when please, thank you, and sorry
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was going to help you connect with people around you.
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There's this really complicated social environment now and that also includes this sexualization of some relationships,
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a psychological task.
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So we're still talking about the individual at this moment,
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but I want to stop and talk about not the physical piece but the psychological task of much of adolescence.
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If you're familiar with Erik Erickson and his work with the tasks that we all have at different seasons of life.
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He would say that the adolescent's job is to navigate this journey of identity.
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Who am I?
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Who am I as separate from my parents or from my family history and I'm my own person.
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If so,
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what does that look like and how can I connect with my tribe?
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Where is my,
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my people,
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my 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,
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but I really switched toward a lot more peer companionship that I'm going to connect with...
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A romantic peer...
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I'm going to connect with peer groups at my school or in my neighborhood or at my part time job.
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And these people may have different values than my parents had.
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And I may explore all these different ways of being and thinking.
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And my parents no longer seemed to have all the rules,
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uh,
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and all the keys to life.
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And so this process of navigating life,
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navigating the social environment,
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navigating all of the um,
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the reasoning and facts and cognitive pieces that a person might think throw as far as what do I believe?
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Do I believe the same thing my parents do and where can I connect?
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Where can I belong and find connection with other people?
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What 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.
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Um,
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I don't feel connected to the community of people who were born female or born male,
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whatever the case may be.
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I don't identify as that.
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It's not my identity.
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I don't feel connected to that.
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I can't connect with the peer group in that way.
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And in the case of this emerging sexuality as well,
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that I'm looking for my identity,
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I'm looking for my group.
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And there's this gender diversity journey for some people on the spectrum.
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So a lot of the research shows that although we would expect to see two um,
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autism within any group throughout the world,
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whether it's a um,
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type 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.
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So the research says about 5-8 % of the gender diverse community maybe on the spectrum,
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I suspect it's somewhat higher than that.
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Um,
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but certainly there's that process of understanding the physical body,
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understanding the peer group connection,
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seeking that out and this who am I kind of journey in addition to changes in the person that can make,
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um,
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some added stress during a life season.
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There are also a lot of changes to the environment of the individual who's in that adolescent period within autism.
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What we see is that the autistic individual has more difficulty than their peers with things like independent daily activities and behavior.
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What that means is that this person may have this brilliant sense of math or music or art.
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Their head may be filled with facts and ideas.
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Um,
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but their ability to just kind of flow through the day and get things done.
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Like I'm going to take my shower,
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I'm going to throw my laundry in as a high school student,
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I'm going to learn to drive,
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I'm going to learn how to save money,
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I'm going to learn to cook.
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You know,
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that kind of stuff is just harder.
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Like I can name all these physics equations,
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but I just can't catch up with my peers in this area of being independent and,
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and 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,
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wider,
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The gap gets wider with age.
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So as you know,
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a five year old,
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there's some gap there where neuro typical peers are doing more independently typically than the autistic individual,
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but you know,
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there's not a whole lot of independent things that a five year old is being asked to do.
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But when you get to middle school high school young adulthood,
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whoa,
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the independent demand just skyrockets and this gap becomes more and more visible.
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Um,
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and although the person may really be ahead with academic knowledge,
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this person may be really feeling the gap of cash,
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how do my peers get through life this way?
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This is really overwhelming.
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I have a lot of anxiety,
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I feel like I don't know how to navigate all these things.
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So 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.
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So can you approach a teacher and ask a question or talk to your teacher about,
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hey,
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I think the reason I am falling behind in math is that I don't understand this core concept.
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Can you help me understand this or can they approach their peer and say,
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hey,
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do you want to go to the dance with me or hey,
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I think we had kind of a rough interaction back there.
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I really didn't mean to,
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um,
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you know,
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criticize you,
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I think it was a misunderstanding.
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So 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.
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There 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.
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These things start to become the person's responsibility instead of the parents' responsibility.
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And they're just can be a gap there where the expectation for independence is growing,
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but the person is struggling to keep up.
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There are increased demands with independence within what we call executive function.
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So that ability to plan and organize and multitask time management,
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These things that the person becomes more and more in charge of... these become harder and harder.
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These 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.
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You know,
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can 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.
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Can I message my doctor through the electronic medical record and ask a question and then driving?
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You know,
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driving can be a milestone that feels overwhelming for the individual on the spectrum.
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And I looked this past year at the clinic patients I've seen across several years.
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I took ages 16 through 20 who individuals who had uh,
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no intellectual disability.
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And 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.
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So there can be this kind of overwhelming sense that things happen too fast on the road.
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Things are overwhelming.
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Or what if I make the wrong choice?
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What if I crash?
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What if I hurt someone in the midst of this increasing demand for independence?
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There's also this reduction in structure or helpful support,
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as we said before,
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the person starts to be encouraged to be their own self advocate.
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And I don't know about where you live,
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but 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,
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it means that the individual is in charge of doing their own talking to people.
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Self advocacy means that you can um,
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look at your situation,
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think 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.
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So I approach my guidance counselor,
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I approach my professor,
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I approach my boss and I initiate this discussion and we come to an agreement about what a good plan would be for.
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Let's say for me to arrive on time for me to get my work in on time,
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et cetera.
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So parents start to play less of a role and the,
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so the structure and the support starts to be pared back while the demand is increased socially,
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things are more complex as well.
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So gone are the days where running around and chasing each other and playing tag and hiding things is really a great social interaction.
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I 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,
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the child would play with other kids for example.
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But 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.
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That's fine.
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But 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,
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but 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,
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that'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?
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How do I start a relationship?
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How do I maintain this relationship?
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How do I understand this relationship?
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What just happened?
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Why did this relationship end?
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Why did they misinterpret me?
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Because that's not what I meant.
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So 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,
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but you're really navigating your own emerging adult relationships.
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Another thing that happens is that life becomes less predictable.
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It's not your life in a box anymore.
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You know when you're in first grade,
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you know that next year you go to second grade and the next year you go to third grade,
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fourth grade and life has this very predictable rhythm where you know where you go next.
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Now you don't know what classes will be like or what your teacher will be like,
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but you're going to the same school or you're switching schools,
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but you have the structure ahead of you.
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There's still something that propels you along and when you get to the next place,
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there's a structure in place for you and someone will tell you where you're going to be next.
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When you get to the end of high school,
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at least in the United States?
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What happens is that people start to say to you,
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what are you going to do next?
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What are you going to be when you quote grow up,
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what do you want to be?
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And 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,
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that everyone is kind of making their own path.
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And the person on the spectrum can feel like,
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well,
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what am I supposed to do?
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What,
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what is my life supposed to look like?
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Where is the path?
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Show me the path and I'll follow the path.
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But to forge my own path,
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may not actually feel that empowering or exciting.
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I kind of like to know that I'm on the correct path.
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I like to know how to meet people's expectations.
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I like to know that I'm not getting lost.
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I like to know that I'm not taking a risk that it's not unsafe.
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So the future becomes more self propelled.
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And this can also be a task of young adulthood that is daunting to the person with neurology that likes to know,
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like,
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did I get an A on that,
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you know,
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did I do it right.
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Is this where I'm supposed to be?
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So here we have the picture during adolescence that the internal self,
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the psychological biochemical,
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physical self and the external life,
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the supportive structure,
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the demands on the individual are creating this sense of just a lot less stability.
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You know,
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my internal self is less stable.
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I feel all over the place.
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I'm crying one minute I'm laughing.
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One minute I'm throwing something.
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One minute I have all these demands on me.
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People seem to be figuring this out,
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but I can't figure it out.
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I can't sleep,
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I'm anxious.
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Um And there's all this stuff that goes along with this less stable season.
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The person on the spectrum,
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as we said earlier,
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with relationship to regulation,
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they're more likely to get dis regulated just from a neurological perspective.
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And dis regulation looks like fight where it's any externalized expression of being unsent erred,
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I'm crying,
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I'm melting down.
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I'm screaming,
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I'm throwing something,
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I'm shouting and arguing at you and I'm slamming doors.
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You get flight.
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I can't go to school anymore.
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My stomach hurts.
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I need to come home.
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I'm staying in my room.
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I'm not going to eat at the table.
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I have homework to do.
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I'm not coming out.
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You get this social withdrawal and freeze is also part of this regulation that if you force me to I will sit sit here physically.
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But psychologically I'm offline.
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I can't process what's happening anymore.
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I'm checked out.
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I'm staring at the wall,
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I might be having a seizure that's not electrical.
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I 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.
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But also what I see in the clients that I serve is that the regulation difficulty can all of a sudden look different.
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So that would not be unusual either.
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So what I see is that sometimes if little kiddos were under reactive to their environment,
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they were less reactive to what's going on around them,
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they may look really um compliant and passive and go with the flow.
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But what that really is is that they should have some response to what's going on in the environment.
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But instead they just lack a response.
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And if someone tells them to sit up,
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they set up.
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If someone tells them to go here or there,
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they do it.
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But they don't have a lot of reactivity to what's going on.
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And adolescence.
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This may be a person that flips into an over reactive state or an elevated reactive profile where oh my gosh,
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the littlest thing happens and I react to it now.
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So I have like this flip from passive to so elevated in my response or you can have vice versa.
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Where as a little kid,
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this person was melting down and rolling on the ground and biting people and now as an adolescent,
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they can't get out of bed and they're sluggish and they don't eat and they don't have momentum for activities.
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That could also be something that you see where there's this dis regulated state,
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but it looks different,
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but it's still dysregulation and it's still uh kind of falls within what we talked about in that past series.
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Some people feel like with biochemical and hormonal changes,
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that their anxiety really is elevated.
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Sometimes there are self harm behaviors that may look like cutting or um hitting yourself,
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biting yourself,
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banging your head on the wall.
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Sometimes there are elevated sensory concerns where,
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you know,
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this food never bothered me before or noise or whatever,
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but all of a sudden I just really can't tolerate the sensory environment,
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It's too much and that can be part of this physical and environmental season of dis regulation.
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Now 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,
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that I work in a clinic.
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So 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.
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So 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,
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there's a bit better social connection.
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Um,
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executive functions not that much of a problem.
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So you can certainly see this variety of individualized um kind of seasons and my purpose and talking about this isn't to say,
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oh gosh,
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when people get to adolescence,
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that's going to be rough.
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No,
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it'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.
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And I think whenever that happens in your life or the life of those,
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you love that,
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um,
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you know,
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certainly it's likely to happen for you.
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It may be adolescents for someone else.
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Uh,
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you know,
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maybe pregnancy or menopause or even just life seasons that aren't physical,
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that oh,
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my parent dies and that's a season where my body is really responding differently.
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I 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.
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I 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.
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And I'm looking forward to the third episode.
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We're going to focus on next time and this is going to have to do with hormonal shifts.
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A lot of that will talk about the experience of females on the spectrum,
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just because they're tend to be,
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of course more discreet hormonal shifts in the lives of women.
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This will include menstrual cycles,
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pregnancy,
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breastfeeding,
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menopause.
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Um,
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so some of these hormonal shifts will also impact males on the spectrum and some will be more specific to females.
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But I really hope you can join us next time as we start rounding out this series on shifting characteristics in autism.
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