Join Dr. Regan for the first in a series on autism misdiagnosis. This episode focuses on why autism is misdiagnosed and how we can do better.
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 episode transcript below:
1
00:00:01,890 --> 00:00:04,590
Hello and welcome to autism.
2
00:00:04,590 --> 00:00:06,170
In the adult podcast.
3
00:00:06,180 --> 00:00:07,450
I am your host,
4
00:00:07,450 --> 00:00:08,890
Dr Theresa Regan.
5
00:00:08,900 --> 00:00:10,830
I'm a neuropsychologist.
6
00:00:10,840 --> 00:00:19,210
The director of an adult diagnostic autism clinic in central Illinois and the parent of an autistic teen.
7
00:00:19,220 --> 00:00:27,060
I am going to be starting a new series today and that's going to focus on misdiagnosis...
8
00:00:27,060 --> 00:00:27,360
So...
9
00:00:27,360 --> 00:00:35,630
people who are on the autism spectrum, who have that autistic neurology, but are diagnosed with something else...
10
00:00:35,640 --> 00:00:42,180
typically a mental health diagnosis and oftentimes several diagnoses.
11
00:00:42,950 --> 00:00:50,480
We're going to talk about why that happens and how to understand how we can do better.
12
00:00:51,620 --> 00:00:53,560
As we're starting off,
13
00:00:53,570 --> 00:01:02,030
I am going to tell you a story and the story is called The Parable of the Elephant.
14
00:01:02,040 --> 00:01:04,890
And this is a very ancient parable.
15
00:01:04,900 --> 00:01:08,320
It has a few variations across cultures.
16
00:01:08,330 --> 00:01:09,370
But it really,
17
00:01:09,370 --> 00:01:15,260
I think. speaks to this dilemma that we have about misdiagnosis.
18
00:01:16,520 --> 00:01:23,610
There was an ancient village and they had never seen an elephant before.
19
00:01:23,620 --> 00:01:30,450
And you can imagine that when someone brought an elephant into their village it was a big deal.
20
00:01:30,460 --> 00:01:36,070
People wanted to know "what does a creature called an elephant look like?"
21
00:01:36,540 --> 00:01:46,990
And there was also this group of villagers there who were blind and they thought well we aren't going to be able to see the elephant,
22
00:01:46,990 --> 00:01:56,670
but we could put out our hands and we could perceive the elephant through touch and this will let us know what the elephant is like.
23
00:01:58,350 --> 00:02:02,660
So indeed the villagers went to the center of town.
24
00:02:02,670 --> 00:02:06,250
They stood around this creature called an elephant.
25
00:02:06,260 --> 00:02:12,830
In each person put out their hand and they were able to experience the elephant.
26
00:02:14,020 --> 00:02:17,690
So what happened is that the first person said,
27
00:02:17,700 --> 00:02:19,650
oh I get it.
28
00:02:19,660 --> 00:02:22,470
An elephant is like a fan,
29
00:02:22,480 --> 00:02:28,900
I've put out my hand and I can feel that it's broad and wavy and thin.
30
00:02:28,910 --> 00:02:31,150
An elephant is like a fan.
31
00:02:32,000 --> 00:02:37,980
And here the person had felt the ear of the elephant.
32
00:02:37,990 --> 00:02:40,510
Well the next person said,
33
00:02:40,520 --> 00:02:52,780
I do not know what you're talking about because I am right here feeling the elephant and I can tell you that the elephant is broad and tall and wide.
34
00:02:52,790 --> 00:02:55,130
I can't even put my arms out,
35
00:02:55,130 --> 00:03:00,660
but I can just say that that an elephant is like a wall,
36
00:03:00,670 --> 00:03:04,400
it's so big and massive and strong.
37
00:03:05,390 --> 00:03:07,820
The next person disagreed as well,
38
00:03:08,750 --> 00:03:10,290
this person said no,
39
00:03:10,290 --> 00:03:10,480
no,
40
00:03:10,480 --> 00:03:11,150
no,
41
00:03:11,160 --> 00:03:14,660
it's... I can put my arms around it,
42
00:03:14,670 --> 00:03:24,490
it's thick and tall but there is an end to it and and it's kind of like a tree trunk or a pillar.
43
00:03:24,500 --> 00:03:30,010
And this person was experiencing the leg ... touching the leg of the elephant.
44
00:03:30,410 --> 00:03:32,740
The next person was at the tail.
45
00:03:32,750 --> 00:03:34,100
They said no,
46
00:03:34,100 --> 00:03:34,890
no,
47
00:03:34,900 --> 00:03:36,850
not like that at all.
48
00:03:36,860 --> 00:03:38,400
This is thin,
49
00:03:38,410 --> 00:03:41,370
it's really... an elephant is like a rope,
50
00:03:41,380 --> 00:03:44,200
it's corded and thin and long.
51
00:03:44,210 --> 00:03:46,900
No said the next person,
52
00:03:47,220 --> 00:03:58,960
the elephant is like a snake and they were there at the trunk and they said it's thick and curvy and I can just feel all the textures of the skin,
53
00:03:58,960 --> 00:04:01,670
it's really like a snake,
54
00:04:01,680 --> 00:04:03,820
that's what an elephant is like.
55
00:04:03,830 --> 00:04:08,290
And the last person was feeling the tusk and said,
56
00:04:08,290 --> 00:04:08,610
no,
57
00:04:08,610 --> 00:04:10,440
not like a snake at all.
58
00:04:10,450 --> 00:04:12,220
It's curved a bit,
59
00:04:12,220 --> 00:04:22,020
but it's really hard and ah strong and smooth, and I would say an elephant is like a sword or a spear.
60
00:04:24,250 --> 00:04:30,670
So the parable is meant to teach that here,
61
00:04:30,680 --> 00:04:35,080
every person was correct about what was right in front of them,
62
00:04:35,640 --> 00:04:48,340
but they were all incorrect because they were only experiencing a piece of what an elephant is and an elephant is not like a snake or a rope or a wall.
63
00:04:48,400 --> 00:04:58,730
It's really many things put together in that description and an elephant is a whole creature with many of those features.
64
00:04:58,740 --> 00:05:06,480
So that is the lesson and it applies really well to this process of diagnosis regarding autism.
65
00:05:07,250 --> 00:05:07,570
So,
66
00:05:07,570 --> 00:05:13,530
what happens in the area of diagnosis is that a client or patient will present,
67
00:05:13,540 --> 00:05:18,800
they'll have concerns and some characteristics that maybe they're struggling with.
68
00:05:18,810 --> 00:05:24,670
And the clinician will see that one little piece and label it with a diagnosis,
69
00:05:24,680 --> 00:05:28,360
but they won't see the big picture diagnosis,
70
00:05:28,370 --> 00:05:29,810
which is autism.
71
00:05:30,640 --> 00:05:30,950
So,
72
00:05:30,950 --> 00:05:35,600
let me step away from the animal analogy for a moment,
73
00:05:35,600 --> 00:05:41,130
but we're going to go back and kind of weave this image through to make some other points.
74
00:05:41,140 --> 00:05:48,130
One point I want to make is that we define diagnoses based on certain criteria.
75
00:05:48,140 --> 00:05:55,320
So these are pieces of the condition or the diagnosis.
76
00:05:55,330 --> 00:05:55,890
So,
77
00:05:55,890 --> 00:05:58,920
depression has a list of criteria.
78
00:05:58,920 --> 00:06:00,290
Things that we look for.
79
00:06:00,290 --> 00:06:04,590
Do you have these features? and then we diagnose depression.
80
00:06:04,600 --> 00:06:07,650
Alzheimer's has a list of criteria,
81
00:06:07,660 --> 00:06:09,820
bipolar has a list of criteria,
82
00:06:09,830 --> 00:06:12,140
autism has a list of criteria.
83
00:06:12,150 --> 00:06:23,700
Now the reason for having criteria is to make certain that we're talking about the same thing and also to help us research this diagnosis.
84
00:06:23,700 --> 00:06:25,810
We really want to know more about it.
85
00:06:25,820 --> 00:06:27,530
We want to help people,
86
00:06:27,530 --> 00:06:35,330
we want to understand what kinds of things are not helpful and we want to know the prognosis.
87
00:06:36,310 --> 00:06:39,900
So we have to agree on some language for it.
88
00:06:39,900 --> 00:06:41,350
And some criteria.
89
00:06:42,280 --> 00:06:44,020
When will we call something
90
00:06:44,020 --> 00:06:48,730
Alzheimer's? When will we call something bipolar instead of something else?
91
00:06:51,140 --> 00:06:53,510
In the example of the parable of the elephant,
92
00:06:53,520 --> 00:07:00,810
each person who encountered the elephant described a small element of one large thing.
93
00:07:00,820 --> 00:07:05,290
They defined it on the basis of one piece rather than the whole.
94
00:07:05,300 --> 00:07:11,330
So in this case it was like creating criteria for an elephant ear.
95
00:07:11,710 --> 00:07:21,430
And then calling the ear the elephant... an elephant is like a fan because I've experienced this piece,
96
00:07:21,440 --> 00:07:26,250
this ear. or a criteria for the tusk,
97
00:07:26,260 --> 00:07:29,800
and saying that an elephant is something with the tusk.
98
00:07:29,810 --> 00:07:38,880
Instead of realizing that a tusk is a little piece of an elephant that does not define the elephant.
99
00:07:38,880 --> 00:07:50,960
So you get the picture that there is a problem with defining such a large creature based on one feature or one experience with ...
100
00:07:50,970 --> 00:07:58,710
with the characteristic. So related to diagnoses ... autism like the elephant ... the big picture.
101
00:07:58,720 --> 00:08:08,110
It's the diagnosis with seven diagnostic criteria and each of the criteria could be diagnosed separately as something else.
102
00:08:08,700 --> 00:08:20,220
So if the tribe of people were encountering our concept of autism and they had never come across autism before and one individual encountered the social criteria,
103
00:08:20,240 --> 00:08:22,650
they might diagnose social anxiety.
104
00:08:22,660 --> 00:08:24,010
Well that's what autism is ...
105
00:08:24,010 --> 00:08:25,040
social anxiety,
106
00:08:25,040 --> 00:08:28,080
let's just call this social anxiety.
107
00:08:28,250 --> 00:08:35,920
Another person could encounter autism and say actually... really autism is a difficulty with flexibility,
108
00:08:35,930 --> 00:08:37,770
difficulty with change.
109
00:08:37,780 --> 00:08:41,910
The person wanting to repeat things... for things to be predictable,
110
00:08:41,910 --> 00:08:44,150
perhaps having rituals for the day.
111
00:08:44,730 --> 00:08:46,510
So let's call this OCD.
114
00:08:48,680 --> 00:08:53,680
They're looking at this one piece of the larger autistic picture.
115
00:08:54,540 --> 00:09:01,490
Another individual may encounter the executive function difficulty that an individual on the spectrum has.
116
00:09:01,500 --> 00:09:02,960
And they may say,
117
00:09:02,960 --> 00:09:06,540
well look this is executive function difficulty.
118
00:09:06,540 --> 00:09:07,670
I know what this is.
119
00:09:07,680 --> 00:09:08,320
It's ADD.
122
00:09:10,550 --> 00:09:23,300
Another person may encounter problems that the individual presents with ... emotional regulation, with sleep, and sometimes a really encompassing obsessive interest in an activity.
123
00:09:23,310 --> 00:09:33,580
And they might say wow it looks like this person is kind of manic and emotionally labile and... and I think this is actually bipolar disorder.
124
00:09:33,590 --> 00:09:36,690
That's what this creature is.
125
00:09:36,690 --> 00:09:39,710
That's what this autistic experiences.
126
00:09:43,190 --> 00:09:53,060
So it's akin to having the tribe's person encounter the ear of the elephant and labeling this as a fan or the tail and labeling it as a rope.
127
00:09:53,070 --> 00:10:24,090
In this case a clinician might encounter autism but not be familiar with it and not see the big picture and then label a piece of autism as if that were the whole. The way that we ensure that as clinicians we're seeing the big picture instead of just one piece of something is to make sure we're really doing a thorough differential diagnostic process.
128
00:10:24,100 --> 00:10:33,040
A differential is a list of diagnoses to consider that could be present based on the few things that we first encounter.
129
00:10:33,050 --> 00:10:35,490
So let's take the animal example.
130
00:10:35,490 --> 00:10:36,050
Again,
131
00:10:36,240 --> 00:10:41,100
if we encounter a huge, gray, lumbering animal with eyes,
132
00:10:41,110 --> 00:10:41,720
ears,
133
00:10:41,720 --> 00:10:43,390
four legs and a tail,
134
00:10:43,400 --> 00:10:44,420
someone may say,
135
00:10:44,420 --> 00:10:48,020
well that's all the criteria for a rhinoceros.
136
00:10:48,770 --> 00:10:52,660
So I think this animal is a rhinoceros.
137
00:10:54,200 --> 00:11:02,640
But the person who understands the importance of differentials will say... other animals also have these features.
138
00:11:02,640 --> 00:11:05,250
You're right ... a rhinoceros does.
139
00:11:05,260 --> 00:11:07,100
But you know,
140
00:11:07,110 --> 00:11:13,000
there are also things to consider such as an elephant or a hippo.
141
00:11:13,010 --> 00:11:15,800
So based on what we know,
142
00:11:15,800 --> 00:11:19,140
we can't quite conclude that this is a rhinoceros,
143
00:11:19,150 --> 00:11:21,670
we have to do a little more detective work.
144
00:11:23,960 --> 00:11:28,640
The differential then is rhinoceros, elephant, hippo.
145
00:11:28,650 --> 00:11:35,360
That's the list of considerations in our consideration of diagnosis.
146
00:11:35,370 --> 00:11:38,330
A person may struggle with executive function.
147
00:11:38,340 --> 00:11:39,290
Yes, ADD
150
00:11:39,670 --> 00:11:41,300
Could be diagnosed.
151
00:11:41,310 --> 00:11:47,300
But after all... there is executive function difficulty in other conditions as well.
152
00:11:47,310 --> 00:11:47,920
ADD
155
00:11:48,310 --> 00:11:49,370
Is one.
156
00:11:49,920 --> 00:11:50,520
However,
157
00:11:50,520 --> 00:11:56,730
every autistic individual will also have some pattern of executive function difficulty,
158
00:11:57,430 --> 00:12:05,760
we would also want to know... has this person had any recent injury or illness, because this can also cause executive function difficulty.
159
00:12:05,770 --> 00:12:08,110
And how old is this person?
160
00:12:08,110 --> 00:12:09,970
What characteristics do they have?
161
00:12:09,980 --> 00:12:13,990
Is this someone who's showing some early signs of dementia?
162
00:12:14,270 --> 00:12:16,070
Also have there been an MRI or any other neurologic features?
166
00:12:18,580 --> 00:12:20,590
Perhaps this is part of a demyelinating process like multiple sclerosis.
169
00:12:23,810 --> 00:12:29,510
So that could be the differential ... rather than seeing executive function problems,
170
00:12:29,520 --> 00:12:31,110
noting that that's what ADD
173
00:12:31,530 --> 00:12:32,780
Is and calling it ADD
176
00:12:33,480 --> 00:12:45,610
We can invite more complexity in and realize that we really need to have a detailed analysis to get to that big picture... that just right description of what the big picture is.
177
00:12:48,860 --> 00:13:00,710
The clinician using the process of differential diagnosis is differentiating autism from other states with similar features.
178
00:13:02,190 --> 00:13:04,650
Although it's true that a rhino is large,
179
00:13:04,650 --> 00:13:05,710
has four legs,
180
00:13:05,720 --> 00:13:06,290
ears,
181
00:13:06,290 --> 00:13:07,160
reproduces,
182
00:13:07,170 --> 00:13:08,300
eats and urinates.
183
00:13:08,330 --> 00:13:18,100
We can't define the creature based on that description without differentiating it from other animals with the same features such as hippos or elephants.
184
00:13:18,150 --> 00:13:25,170
Now it's not that we would mistake a hippo for an elephant if we really could see the big picture.
185
00:13:25,460 --> 00:13:29,530
But if we're only presented with little clues at the beginning,
186
00:13:29,540 --> 00:13:34,740
we know that there are distinct creatures that may have similar elements.
187
00:13:34,780 --> 00:13:42,370
Not that the creatures are so similar that they can't be distinguished when we see the whole big picture,
188
00:13:42,380 --> 00:13:47,820
but that if we're only seeing a few elements present at a time,
189
00:13:47,830 --> 00:13:50,810
we need to know what kind of detective work to do.
190
00:13:51,790 --> 00:13:53,190
For example,
191
00:13:53,200 --> 00:13:56,540
how fast does this animal run?
192
00:13:56,560 --> 00:14:05,020
A Rhino runs faster than an elephant or a hippo at about 34 mph or 55 km/h.
193
00:14:06,220 --> 00:14:09,040
All three are found on the african continent,
194
00:14:09,040 --> 00:14:13,760
but hippos gravitate toward environments with aquatic elements nearby.
195
00:14:13,990 --> 00:14:14,580
Now,
196
00:14:14,580 --> 00:14:18,060
both rhinos and elephants have horns or tusks.
197
00:14:18,070 --> 00:14:18,930
However,
198
00:14:18,930 --> 00:14:22,650
the material in the horn of a rhino is more like our fingernails,
199
00:14:22,660 --> 00:14:27,100
while the tusk of the elephant is made of material closer to our teeth,
200
00:14:27,130 --> 00:14:32,830
Of course an elephant has that distinctive trunk not found in the other creatures.
201
00:14:33,990 --> 00:14:37,720
So this process is the differential process.
202
00:14:37,730 --> 00:14:40,180
If we're only seeing a few elements.
203
00:14:40,180 --> 00:14:51,480
At first we do detective work and we say what other creatures or diagnoses have these same features.
204
00:14:53,000 --> 00:14:57,790
We're aware that certain elements are present that occur in one category,
205
00:14:57,790 --> 00:15:00,020
whether that's a species or a diagnosis,
206
00:15:00,020 --> 00:15:08,660
but we realize that this needs to be tested to differentiate it between other categories with those features as well.
207
00:15:08,670 --> 00:15:12,640
So the differential process for diagnosis should be similar.
208
00:15:12,650 --> 00:15:13,440
For example,
209
00:15:13,450 --> 00:15:17,200
if an individual presents with emotional regulation difficulty,
210
00:15:17,380 --> 00:15:21,710
let's say in this case that looks like mood swings or anger outbursts,
211
00:15:21,720 --> 00:15:28,600
although in others it could look much quieter like dissociation or fleeing,
213
00:15:28,920 --> 00:15:30,030
withdrawing.
214
00:15:30,630 --> 00:15:31,640
But in this case,
215
00:15:31,650 --> 00:15:34,080
if there's mood swings or anger outbursts,
216
00:15:34,090 --> 00:15:43,160
a clinician might diagnose bipolar and maybe even show the person that all the criteria for bipolar are present.
217
00:15:44,000 --> 00:15:45,020
However,
218
00:15:45,030 --> 00:15:49,130
no one has checked whether there's social reciprocity,
219
00:15:49,130 --> 00:15:52,500
difficulty or sensory processing characteristics,
220
00:15:52,510 --> 00:15:54,430
stereotyped movements.
221
00:15:54,550 --> 00:15:55,890
In other words,
222
00:15:55,890 --> 00:16:03,100
nobody has done detective work to see if a different big picture is actually present in this case,
223
00:16:03,100 --> 00:16:05,510
the big picture being autism.
224
00:16:07,750 --> 00:16:13,130
Another individual may present with difficulty understanding "who am I?
225
00:16:13,130 --> 00:16:16,360
I just don't have the stable sense of who I am,
226
00:16:16,370 --> 00:16:19,910
I can't reach my internal state,
227
00:16:19,920 --> 00:16:22,120
what's going on inside of me?"
228
00:16:22,860 --> 00:16:26,960
They also have difficulty keeping an even keeled mood.
229
00:16:26,970 --> 00:16:36,800
They struggle to start and maintain and understand relationships well. A person may present with these features and the clinician will say,
230
00:16:36,800 --> 00:16:37,330
look,
231
00:16:37,340 --> 00:16:41,880
all the criteria for borderline personality disorder have been met.
232
00:16:43,800 --> 00:16:45,190
That may be true.
233
00:16:45,200 --> 00:16:46,220
However,
234
00:16:46,230 --> 00:16:49,690
even though all the criteria for one condition may be met,
235
00:16:49,700 --> 00:17:01,860
the diagnostic manual stresses that you make that diagnosis only if the characteristics are not better explained by a different diagnosis,
236
00:17:02,750 --> 00:17:05,670
it's not that the features aren't present.
237
00:17:05,680 --> 00:17:13,900
It's whether the big picture of features is explained best by that diagnosis or by a different one.
238
00:17:13,910 --> 00:17:15,990
If these features are present,
239
00:17:15,990 --> 00:17:19,110
but there are also stereotype verbalization,
240
00:17:19,120 --> 00:17:20,560
ritualistic behaviors,
241
00:17:20,560 --> 00:17:23,220
difficulty processing social information,
242
00:17:23,230 --> 00:17:26,050
all of which have been present in childhood,
243
00:17:26,060 --> 00:17:29,690
then the better big picture diagnosis is autism.
244
00:17:31,960 --> 00:17:43,030
So the crux of the problem is this autism is rarely, rarely, rarely included in a clinician's differential process.
245
00:17:44,170 --> 00:17:46,250
This is improving somewhat.
246
00:17:46,260 --> 00:17:51,870
But most patients I see who have been misdiagnosed carry often multiple diagnoses,
247
00:17:51,880 --> 00:17:55,110
all of which reflect core autistic characteristics.
248
00:17:55,120 --> 00:17:57,550
It maybe schizophrenia,
249
00:17:57,560 --> 00:18:00,720
maybe borderline personality, eating disorder,
250
00:18:00,720 --> 00:18:01,750
social anxiety,
251
00:18:01,750 --> 00:18:01,850
OCD
254
00:18:03,230 --> 00:18:10,500
But really the suspicion should be that all of these together maybe describing the big picture diagnosis of autism.
255
00:18:10,510 --> 00:18:13,890
But autism has never been considered.
256
00:18:13,950 --> 00:18:19,650
It's not been ruled out and the better diagnosis assigned.
257
00:18:19,660 --> 00:18:22,570
No it's just never been considered.
258
00:18:23,730 --> 00:18:32,580
Someone has seen the characteristics they are familiar with and they have not met this creature called autism.
259
00:18:32,960 --> 00:18:38,400
So they assign diagnoses to the parts based on what they're familiar with.
260
00:18:38,410 --> 00:18:42,430
Not realizing that autism can also present similarly.
261
00:18:42,430 --> 00:18:43,960
But for different reasons.
262
00:18:43,970 --> 00:18:53,890
And of course that the big picture of autism is different than the pieces that they've labeled schizophrenic, OCD...
265
00:18:54,930 --> 00:18:56,990
Just as in the case of animals,
266
00:18:56,990 --> 00:19:00,330
it's not that bipolar and autism are so similar.
267
00:19:00,330 --> 00:19:02,010
We just can't tell the difference.
268
00:19:02,020 --> 00:19:06,840
Well no, we can tell that an elephant is not a hippo.
269
00:19:06,840 --> 00:19:28,610
If we see the whole creature... it's just that if we're presented with pieces on an initial visit and we don't know how to see the big picture and we've never encountered an elephant, or in this case autism... then we look at what we see and what we know and we label that instead.
270
00:19:28,610 --> 00:19:46,200
And that's how we get into this problematic situation of misdiagnoses... the person hasn't considered or ruled out autism, and therefore we have this collection of piecemeal diagnoses that really don't capture the accurate neurologic picture.
271
00:19:46,640 --> 00:19:53,580
I'm not going to get into the nitty gritty of when autism and another diagnosis should be made together.
272
00:19:53,590 --> 00:19:56,950
There are rules and guidelines for that as clinicians,
273
00:19:56,960 --> 00:20:02,870
but there are situations where you will have more than one diagnosis.
274
00:20:02,870 --> 00:20:06,290
So let's say autism and bipolar,
275
00:20:07,340 --> 00:20:16,810
essentially a second diagnosis would be made if there's a constellation of characteristics that are not entirely accounted for by autism.
276
00:20:16,820 --> 00:20:18,230
So for example,
277
00:20:18,230 --> 00:20:22,410
in over 500 patients that I've diagnosed,
278
00:20:22,420 --> 00:20:38,870
I believe I've made an additional diagnosis of bipolar twice because I did not feel the sleep disturbance and emotional regulation difficulty and other features were explained entirely by autism.
279
00:20:39,460 --> 00:20:40,340
Likewise,
280
00:20:40,340 --> 00:20:43,560
I believe I also made a diagnosis of OCD
283
00:20:44,610 --> 00:20:45,560
At least once,
284
00:20:45,560 --> 00:20:46,680
perhaps twice.
285
00:20:46,690 --> 00:20:50,430
And borderline essentially the same... once or twice.
286
00:20:51,160 --> 00:20:52,120
In addition,
287
00:20:52,130 --> 00:21:00,340
a second diagnosis may be appropriate if ... even though the characteristics are rooted in autism ...
288
00:21:00,350 --> 00:21:12,950
if this second thing becomes an area of such concern for the person's well being and health that we really need to go after intervention specifically for this thing.
289
00:21:12,960 --> 00:21:14,920
For example,
290
00:21:15,270 --> 00:21:24,000
even though many individuals on the spectrum have differences in their eating profiles that can lead to restricted eating,
291
00:21:24,490 --> 00:21:38,440
... actually eating disorder should still be diagnosed if this really gets to the point where medical problems and health difficulties are stemming from really extreme nutritional deficits.
292
00:21:38,440 --> 00:21:43,380
So even though we know it's not separate from autism neurology,
293
00:21:43,390 --> 00:21:50,560
it still has become an area of significant and distinct concern that needs its own intervention.
294
00:21:51,260 --> 00:21:51,820
However,
295
00:21:51,820 --> 00:21:56,160
the intervention should be made in light of the neurologic base.
296
00:21:58,940 --> 00:22:02,990
Similarly for depression or PTSD.
297
00:22:03,000 --> 00:22:10,190
Sometimes people have these diagnoses ... and they are misdiagnoses for what is actually autism.
298
00:22:10,190 --> 00:22:11,360
However,
299
00:22:11,370 --> 00:22:19,110
certainly if autism has been diagnosed or if it has been assessed and ruled out,
300
00:22:19,120 --> 00:22:25,480
you can still also have depression or post traumatic stress disorder.
301
00:22:27,220 --> 00:22:55,830
These are things that in themselves create distress and symptomotology that need to be addressed specifically for the individual's well being. Another challenge that we have because of this history of mixing diagnoses and missing autism is that the research that occurs does not really reflect in a reliable way
303
00:22:57,110 --> 00:23:00,600
the differences between autism and other diagnoses.
304
00:23:01,400 --> 00:23:05,760
The reason for that is that a study will take,
305
00:23:05,760 --> 00:23:06,550
for example,
306
00:23:06,550 --> 00:23:12,590
people who have been diagnosed with autism and people who have been diagnosed with bipolar and compare them.
307
00:23:12,600 --> 00:23:13,570
However,
308
00:23:13,570 --> 00:23:16,800
when you really read how that process has gone,
309
00:23:16,810 --> 00:23:26,160
nobody has culled through this group of bipolar individuals to make sure that none of them are actually misdiagnosed autistics.
310
00:23:26,160 --> 00:23:26,320
So,
311
00:23:26,320 --> 00:23:36,990
you've got really strong potential for an autistic group being compared to a group of mixed diagnosis,
312
00:23:36,990 --> 00:23:40,640
perhaps bipolar and autism,
313
00:23:40,650 --> 00:23:43,910
... similarly for other diagnoses.
314
00:23:45,970 --> 00:23:50,060
Other research studies don't even use diagnosed groups.
315
00:23:50,060 --> 00:24:05,710
Sometimes they'll use people who self report autistic qualities or who complete a questionnaire reflecting autistic qualities to see if higher autistic qualities compares in some way with people who have a different diagnosis.
316
00:24:05,810 --> 00:24:14,920
The group with the different diagnosis or even no diagnosis has not been specifically assessed and autism ruled out.
317
00:24:15,080 --> 00:24:16,080
And secondly,
318
00:24:16,080 --> 00:24:29,200
you can't really conclude much on the basis of a questionnaire of autistic characteristics if you're wanting to compare the actual diagnostic threshold with another state,
319
00:24:29,210 --> 00:24:30,920
another diagnosis.
320
00:24:32,060 --> 00:24:33,850
For example,
321
00:24:33,860 --> 00:24:36,210
a lot of people with ADD
324
00:24:36,850 --> 00:24:38,450
Say well I know ADD
327
00:24:38,840 --> 00:24:41,240
Can include social difficulties.
328
00:24:41,250 --> 00:24:41,390
ADD
331
00:24:41,820 --> 00:24:43,480
Can include sensory issues.
332
00:24:43,480 --> 00:24:43,610
ADD
335
00:24:43,980 --> 00:24:45,920
Can include hyper focus.
336
00:24:47,180 --> 00:24:53,100
... That may be true but we actually don't know that it's true because the ADD
339
00:24:53,470 --> 00:25:02,890
group has not been actually professionally assessed for people missing a correct diagnosis of autism.
340
00:25:03,400 --> 00:25:09,400
So many of my clients that come for diagnosis have had a diagnosis of ADD
343
00:25:09,870 --> 00:25:12,400
since very early in their life.
344
00:25:12,410 --> 00:25:22,480
And not everyone ... but you do get this problematic mixing and so you can't really be sure what the overlap is.
345
00:25:23,000 --> 00:25:30,520
We do know that people with these other diagnoses have been misdiagnosed to some extent.
346
00:25:30,520 --> 00:25:39,520
We don't know how much because we don't have a correct diagnosis of autism across adulthood and across the lifespan yet.
347
00:25:39,530 --> 00:25:42,380
So we're moving in a good direction,
348
00:25:42,390 --> 00:25:44,540
but these are the complexities.
349
00:25:44,550 --> 00:25:48,240
If we want to talk about diagnosis and why it gets missed,
350
00:25:48,250 --> 00:25:50,080
why it gets misunderstood,
351
00:25:50,090 --> 00:25:54,380
and how come the research can be a little difficult to interpret.
352
00:25:55,730 --> 00:25:59,660
This is foundational knowledge about misdiagnosis.
353
00:25:59,670 --> 00:26:03,920
We are going to be doing a series of a few more episodes,
354
00:26:03,920 --> 00:26:08,300
looking at some of the common misdiagnoses in more detail.
355
00:26:09,230 --> 00:26:13,060
I'm glad you could join me for this conversation about autism,
356
00:26:13,070 --> 00:26:14,230
diagnosis,
357
00:26:14,240 --> 00:26:16,120
elephants and hippos,
358
00:26:16,130 --> 00:26:23,480
and I hope it was illustrative to just set that foundation for the complexity that we are diving into.
359
00:26:24,190 --> 00:26:25,840
I hope you join me next time.
Comments (1)
To leave or reply to comments, please download free Podbean or
Great information that is broken down in a clear and easy to understand way.
Friday Sep 16, 2022
To leave or reply to comments,
please download free Podbean App.