Recognizing Risks, Misdiagnoses, and OCD

Join Dr. Regan for the final episode in this series on autism misdiagnosis. This episode focuses on anxiety-related conditions and when their diagnosis may mean that autism is never considered. Wrapping up this series, Dr. Regan also discusses that after all assessments are concluded, there will be instances when no diagnosis of autism can or should be made.

Previous episode -- Abuse, Neglect, and Relational Pain on the Autism Spectrum

Dr. Regan's Resources

Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life

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 here:

1
00:00:06,730 --> 00:00:07,190
Hello,

2
00:00:07,190 --> 00:00:09,130
this is Dr Theresa Regan.

3
00:00:09,140 --> 00:00:11,790
I am the host of this podcast,

4
00:00:11,800 --> 00:00:13,320
autism in the adult.

5
00:00:13,330 --> 00:00:15,480
I'm a neuropsychologist,

6
00:00:15,490 --> 00:00:23,650
the director of an adult diagnostic autism clinic in central Illinois and a certified autism specialist.

7
00:00:24,330 --> 00:00:32,480
You are joining me for the 4th and final episode of a series on autism and misdiagnosis.

8
00:00:32,490 --> 00:00:36,480
The first episode covered foundational information.

9
00:00:36,490 --> 00:00:39,320
Why does misdiagnosis occur?

10
00:00:40,390 --> 00:00:47,110
That is, why is autism missed while other conditions may be diagnosed Instead.

11
00:00:48,040 --> 00:01:02,860
The next episode focused on personality disorders and we specifically reviewed information about borderline personality and narcissistic personality as potential misdiagnoses for autism.

12
00:01:03,640 --> 00:01:12,730
The 3rd episode covered information about bipolar disorder and depression and today's episode will focus on anxiety.

13
00:01:14,620 --> 00:01:25,760
I should say that we could continue this misdiagnosis series for quite some time and cover other really common areas of misdiagnosis ... like schizophrenia,

14
00:01:25,760 --> 00:01:27,390
psychotic conditions,

15
00:01:27,400 --> 00:01:34,810
dementia and those involving behavioral dysregulation things like oppositional defiant disorder.

16
00:01:35,930 --> 00:01:52,250
I'm not going to dive into all the possible categories because I feel like we've covered several common misdiagnoses and also because the main goal of the series has been to just introduce the concept that misdiagnosis does occur.

17
00:01:52,260 --> 00:02:08,990
And also to illustrate why ... essentially to point out what kinds of elements in the neurology of autism may lead to diagnoses describing these single points but missing the big picture diagnosis of autism.

18
00:02:12,090 --> 00:02:32,480
So we covered the possible misdiagnosis of depression last episode and we're going to talk about anxiety today ... and so I'll share with you my own thoughts based on my personal experiences that anxiety seems to stem at least in part from the neurobiology of autism.

19
00:02:33,040 --> 00:02:39,560
Whereas depressed mood as I would define it with this component of emotional struggle,

20
00:02:39,570 --> 00:02:40,790
hopelessness,

21
00:02:40,790 --> 00:02:41,520
helplessness,

22
00:02:41,520 --> 00:02:42,540
worthlessness,

23
00:02:42,550 --> 00:02:44,950
loss of pleasure in activities.

24
00:02:44,960 --> 00:02:51,540
This seems to be more reactive in the autistic individual to difficult life circumstances.

25
00:02:52,320 --> 00:02:59,000
It seems to me that most individuals on the spectrum do experience difficulty with anxiety,

26
00:02:59,010 --> 00:03:07,470
although the strength of this anxiety and how much it impacts their daily life can vary across life seasons.

27
00:03:10,860 --> 00:03:34,090
There is research that has attempted to capture information on the prevalence of anxiety disorders and autism and there are such wide ranging findings that it is a little difficult to really come to a conclusion about the percentage of autistic individuals who do experience noticeable anxiety.

28
00:03:34,970 --> 00:03:43,560
One thing about the research is that many studies focus on individuals who meet full criteria for a certain anxiety disorder.

29
00:03:43,570 --> 00:03:54,510
So, many individuals who experience anxiety and are impacted by this may not meet full criteria and may not be counted in the studies.  Also,

30
00:03:54,510 --> 00:03:59,620
I find that it's really common for some individuals to have significant anxiety,

31
00:03:59,630 --> 00:04:01,920
but it looks like something else.

32
00:04:01,930 --> 00:04:03,160
For example,

33
00:04:03,160 --> 00:04:08,990
meltdowns and outbursts are often triggered by anxiety in the autistic,

34
00:04:09,000 --> 00:04:13,460
but they're interpreted as opposition or conduct disorders.

35
00:04:14,360 --> 00:04:18,000
A flight reaction or a freeze reaction...

36
00:04:18,190 --> 00:04:24,260
These are often so quiet that the anxiety piece of the reaction gets missed.

37
00:04:25,840 --> 00:04:26,490
So,

38
00:04:26,500 --> 00:04:33,850
my experience is that anxiety is more prevalent than it might at first seem in autism and it's also true,

39
00:04:33,850 --> 00:04:34,290
however,

40
00:04:34,290 --> 00:04:40,860
that I should keep in mind that people do seek appointments with me when they have a season of struggle,

41
00:04:40,870 --> 00:04:49,150
they're coming to a clinic setting because something has really hit them at a time that they need input.

42
00:04:49,370 --> 00:04:59,050
And so it's certainly true that my point of view might be skewed as far as working in this particular setting.

43
00:04:59,050 --> 00:05:05,660
Now, rather than going through each anxiety disorder separately as listed in the diagnostic manual,

44
00:05:05,670 --> 00:05:10,610
let's consider the grouping of generalized anxiety disorder,

45
00:05:10,620 --> 00:05:12,720
social anxiety disorder,

46
00:05:12,720 --> 00:05:16,160
separation anxiety, and agoraphobia together.

47
00:05:18,530 --> 00:05:28,900
It's easy to see that individuals who have this baseline anxiousness, and as I said...

48
00:05:28,910 --> 00:05:33,790
some of which seems to be neurobiological degenerated,

49
00:05:34,360 --> 00:05:37,680
that "my system really leans toward anxiety,"

50
00:05:37,710 --> 00:05:43,870
that this could easily be diagnosed as generalized anxiety disorder.

51
00:05:44,470 --> 00:05:46,530
The social anxiety disorder.

52
00:05:46,530 --> 00:05:47,250
Again,

53
00:05:47,260 --> 00:05:59,170
very understandable why the individual on the spectrum may have anxiety related to social interactions and possibly being evaluated negatively.

54
00:05:59,180 --> 00:06:09,960
Many people on the spectrum have a fear of being misunderstood and they don't feel solid enough in their interactions and their comprehension of what's going on... to feel like,

55
00:06:09,970 --> 00:06:10,300
"Yeah,

56
00:06:10,300 --> 00:06:11,290
that really went well,

57
00:06:11,290 --> 00:06:16,430
I feel calm and confident about my social interaction."

58
00:06:16,440 --> 00:06:21,440
So that can lead to this anxiety that brings them in for assistance.

59
00:06:22,370 --> 00:06:27,920
Separation anxiety again could be seen in the autistic individual.

60
00:06:27,930 --> 00:06:36,280
It's often the case that the person on the spectrum would really love to feel safe and connected with someone who's supportive.

61
00:06:36,290 --> 00:06:49,760
This might be a parent in younger years, it could also be a particular friend or a sibling that they don't want to go out you know unless they're paired with them, and it could also be a spouse.

62
00:06:50,710 --> 00:06:56,820
And agoraphobia is also something that could be diagnosed for the person on the spectrum.

63
00:06:56,820 --> 00:07:01,270
In the sense that this could be a person who doesn't like to leave their home,

64
00:07:01,280 --> 00:07:03,110
feels overwhelmed in crowds,

65
00:07:03,110 --> 00:07:08,800
wants to be in their own space and just have time alone in their own setting.

66
00:07:11,060 --> 00:07:20,680
So we can see how an individual with autistic neurology may acquire one or more of these diagnoses based on a few elements of their experience.

67
00:07:20,690 --> 00:07:26,120
The problem ends up being not that those features aren't present.

68
00:07:26,120 --> 00:07:28,830
For example there is a social anxiety,

69
00:07:28,830 --> 00:07:30,230
there is an agoraphobia.

70
00:07:30,230 --> 00:07:31,270
However,

71
00:07:31,280 --> 00:07:37,890
once those are diagnosed the diagnostic picture stops.

72
00:07:37,900 --> 00:07:46,170
So um, they don't say "hey, we should also look for autism." And that's the piece that's difficult.

73
00:07:46,180 --> 00:07:50,230
We want autism to be in that differential at the beginning.

74
00:07:51,970 --> 00:07:55,740
For more information on differentials and what that means.

75
00:07:55,750 --> 00:07:58,520
See the first episode in this series.

76
00:07:58,530 --> 00:08:06,090
But essentially what we're saying is that if someone is being evaluated for a diagnosis of generalized anxiety,

77
00:08:06,100 --> 00:08:07,250
social anxiety,

78
00:08:07,250 --> 00:08:16,090
separation anxiety, or agoraphobia ... there should be a trigger in our minds that also puts autism in that assessment process.

79
00:08:18,400 --> 00:08:23,960
The current edition of the diagnostic manual does not include PTSD or OCD

82
00:08:24,420 --> 00:08:26,500
under anxiety disorders.

83
00:08:26,510 --> 00:08:37,930
Instead the manual gives these their own sections including trauma and stress or related disorders, and obsessive compulsive and related disorders.

84
00:08:38,610 --> 00:08:39,660
However,

85
00:08:39,670 --> 00:08:42,770
for the cohesiveness of our talk,

86
00:08:42,770 --> 00:08:47,280
I am going to include them in this episode on anxiety.

87
00:08:48,680 --> 00:08:50,780
With regard to PTSD,

88
00:08:50,790 --> 00:08:57,500
you may wish to refer to my previous episode entitled Abuse, Neglect, and Relational Pain

89
00:08:57,500-> 00:09:01,700
On the Autism Spectrum in May of 2021.

90
00:09:02,600 --> 00:09:18,890
I'll link the episode in the show notes today. In summary, trauma is a more frequent experience for those on the spectrum than for neurotypical and there are a lot of reasons that this probably occurs. For one,

91
00:09:18,900 --> 00:09:31,280
some infants and children on the spectrum really have difficulty regulating ...and what that means is their ability to feel steady and calm and safe.

92
00:09:31,860 --> 00:09:37,400
This difficulty can be quite a struggle and it can be very externalized.

93
00:09:37,410 --> 00:09:41,350
So the child may be crying and not sleeping.

94
00:09:41,360 --> 00:09:52,500
They might have frequent or prolonged meltdowns, may struggle with everyday aspects of life like wearing socks or eating food. Because of these high levels of needs,

95
00:09:52,500 --> 00:09:58,480
the caregivers of the child may also struggle to get enough sleep, to stay calm...

96
00:09:58,490 --> 00:10:05,470
This may lead to difficult interactions both emotionally and psychologically ... and sometimes physically,

97
00:10:06,820 --> 00:10:14,370
The individual on the spectrum may also struggle to recognize risk interpersonally... when they do encounter this.

98
00:10:14,370 --> 00:10:15,830
So for example,

99
00:10:15,840 --> 00:10:28,330
many females on the spectrum report that they've been in dating situations and really haven't realized the sexual overtures until they found themselves in a really sexually traumatic situation.

100
00:10:29,390 --> 00:10:38,420
There are other reasons that individuals on the spectrum may experience trauma. And PTSD may not be a misdiagnosis at all.

101
00:10:38,430 --> 00:10:45,900
However many times once this diagnosis is entered in someone's chart,

102
00:10:45,900 --> 00:10:48,170
once it's made... a lot of times,

103
00:10:48,180 --> 00:11:00,150
everything about the person is attributed to trauma reactions and there's been no investigation done to see if the underlying neurologic framework for autism can be detected.

104
00:11:01,460 --> 00:11:09,290
Now ... sometimes the trauma has been so extensive that trauma and neurology just can't be teased apart very easily.

105
00:11:10,010 --> 00:11:14,480
But more often there has never even been a consideration of autism.

106
00:11:14,480 --> 00:11:30,770
Nobody has tried to make this distinction, and there's been this overall conclusion that everything the person experiences and the way they react has to do with the trauma experience. And finally, obsessive compulsive disorder.

107
00:11:32,150 --> 00:11:38,330
Now there are seven diagnostic criteria for autism and the first three are social in nature.

108
00:11:38,370 --> 00:11:46,340
They all must be met. And the last four are described as restricted and repetitive patterns of behavior.

109
00:11:46,350 --> 00:11:48,490
Only two of those need to be met.

110
00:11:49,080 --> 00:11:55,420
Now these criteria include elements of thoughts and behaviors that can be labeled as OCD

113
00:11:55,900 --> 00:11:58,250
if someone's not looking at the big picture.

114
00:11:59,170 --> 00:12:13,910
Examples of these kinds of behaviors or elements might include scrupulosity. For example, being very particular about details, thinking in a black and white manner about what's good and what's bad,

115
00:12:13,910 --> 00:12:15,400
what's right and wrong.

116
00:12:16,110 --> 00:12:18,590
This can include literal thinking.

117
00:12:18,600 --> 00:12:20,470
For those on the spectrum.

118
00:12:20,480 --> 00:12:27,300
They may correct others when they're wrong about something and get upset when people break the rules.

119
00:12:27,310 --> 00:12:30,310
They might want to get all the details correct

120
00:12:30,320 --> 00:12:33,930
rather than being able to move on to more important things.

121
00:12:35,160 --> 00:12:46,160
These individuals may repeat certain sequences of movements or speech and they may want objects lined up and arranged in particular patterns or a particular order.

122
00:12:46,470 --> 00:12:49,280
They may care about symmetry and repetition.

123
00:12:49,880 --> 00:12:54,480
So this focus on repetition and ritual can resemble OCD

126
00:12:55,310 --> 00:13:00,190
Which can mean that the diagnosis of autism is never explored.

127
00:13:01,310 --> 00:13:02,240
So now,

128
00:13:02,240 --> 00:13:06,250
if we step back and we think about all the episodes in this series,

129
00:13:06,260 --> 00:13:11,550
we can see how an individual who presents with a history of multiple diagnoses,

130
00:13:11,640 --> 00:13:14,740
let's say social anxiety disorder,

131
00:13:14,740 --> 00:13:16,090
bipolar disorder,

132
00:13:16,090 --> 00:13:17,780
borderline personality.

133
00:13:17,790 --> 00:13:18,380
Well,

134
00:13:18,380 --> 00:13:25,840
they may actually have one diagnosis that has never even been considered and that is autism.

135
00:13:27,700 --> 00:13:28,170
Now,

136
00:13:28,170 --> 00:13:30,490
before we end this series entirely,

137
00:13:30,490 --> 00:13:41,920
let me add a caveat to balance out this information. Because autism often doesn't get enough attention with clinicians when they're performing assessments,

138
00:13:41,920 --> 00:13:44,330
particularly those perhaps with adults,

139
00:13:44,350 --> 00:13:54,250
I do focus a lot on the importance of autism assessment and also the fact that these diagnoses can be specifically included in a differential.

140
00:13:55,400 --> 00:13:59,910
Since I've emphasized evaluation and differential diagnosis so much,

141
00:13:59,920 --> 00:14:10,880
I also want to say that in reality there will be times when a skilled clinician will not be able to identify whether autism is present or not.

142
00:14:12,670 --> 00:14:12,990
Now,

143
00:14:12,990 --> 00:14:19,840
autism is identified by a specific pattern in the results and for many reasons,

144
00:14:19,840 --> 00:14:28,710
there will be subsets of patients who present without a clear pattern of features and this may reflect how complex their background is,

145
00:14:28,720 --> 00:14:30,680
how much distress they're in.

146
00:14:30,690 --> 00:14:35,910
But if an autistic pattern is not present or it's obscured by other issues,

147
00:14:35,930 --> 00:14:41,130
then the clinician will not be able to rule in or out the diagnosis of autism.

148
00:14:41,140 --> 00:14:43,640
And rightly so. Now,

149
00:14:43,640 --> 00:14:44,340
ultimately,

150
00:14:44,340 --> 00:14:51,040
our first goal needs to be that autism is included in the differential assessment process.

151
00:14:51,150 --> 00:14:55,440
The second goal is that everyone has a correct diagnosis,

152
00:14:55,450 --> 00:14:57,470
whether that's bipolar,

153
00:14:57,480 --> 00:14:59,990
social anxiety, or autism...

154
00:15:01,350 --> 00:15:01,660
Now,

155
00:15:01,670 --> 00:15:04,690
if the autism pattern is not clearly present,

156
00:15:04,700 --> 00:15:07,770
a diagnosis can't and shouldn't be given.

157
00:15:08,430 --> 00:15:18,080
Some individuals will receive feedback that the autism pattern is clearly not present and this is an important piece of information for them.

158
00:15:18,790 --> 00:15:22,600
Others will receive feedback that autism features are present,

159
00:15:22,600 --> 00:15:25,460
but not all the criteria are met.

160
00:15:25,470 --> 00:15:28,000
So a full diagnosis is not made.

161
00:15:29,030 --> 00:15:29,530
Third,

162
00:15:29,530 --> 00:15:41,950
there will be individuals who receive feedback that there are things obscuring any kind of pattern and figuring out how to untangle these things may really actually be impossible.

163
00:15:43,060 --> 00:15:43,900
Lastly,

164
00:15:43,900 --> 00:15:50,190
about 2% of individuals will receive the feedback that they meet full criteria for autism.

165
00:15:51,170 --> 00:15:57,850
Whatever the conclusions are, dedication toward including neurology in the assessment process,

166
00:15:57,860 --> 00:15:58,900
for example,

167
00:15:58,900 --> 00:16:09,220
including autism in the differential ... it can add to the self awareness that clients receive and awareness is key to well-being and growth.

168
00:16:10,590 --> 00:16:23,270
I thank you for joining me for this series on misdiagnosis, those times when people receive a diagnosis that's describing one little element of their presentation,

169
00:16:23,270 --> 00:16:25,160
but not their whole experience.

170
00:16:25,170 --> 00:16:29,040
And autism is one of those big picture diagnoses.

171
00:16:30,660 --> 00:16:32,420
Thanks again for listening,

172
00:16:32,420 --> 00:16:34,490
and I hope you join me next time.