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.

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