Understanding the Prevalence and Misinterpretation of Anxiety in Autism

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:

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Hello,

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this is Dr Theresa Regan.

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I am the host of this podcast,

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autism in the adult.

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I'm a neuropsychologist,

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the director of an adult diagnostic autism clinic in central Illinois and a certified autism specialist.

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You are joining me for the 4th and final episode of a series on autism and misdiagnosis.

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The first episode covered foundational information.

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Why does misdiagnosis occur?

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That is, why is autism missed while other conditions may be diagnosed Instead.

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The next episode focused on personality disorders and we specifically reviewed information about borderline personality and narcissistic personality as potential misdiagnoses for autism.

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The 3rd episode covered information about bipolar disorder and depression and today's episode will focus on anxiety.

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I should say that we could continue this misdiagnosis series for quite some time and cover other really common areas of misdiagnosis ... like schizophrenia,

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psychotic conditions,

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dementia and those involving behavioral dysregulation things like oppositional defiant disorder.

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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.

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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.

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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.

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Whereas depressed mood as I would define it with this component of emotional struggle,

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hopelessness,

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helplessness,

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worthlessness,

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loss of pleasure in activities.

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This seems to be more reactive in the autistic individual to difficult life circumstances.

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It seems to me that most individuals on the spectrum do experience difficulty with anxiety,

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although the strength of this anxiety and how much it impacts their daily life can vary across life seasons.

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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.

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One thing about the research is that many studies focus on individuals who meet full criteria for a certain anxiety disorder.

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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,

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I find that it's really common for some individuals to have significant anxiety,

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but it looks like something else.

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For example,

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meltdowns and outbursts are often triggered by anxiety in the autistic,

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but they're interpreted as opposition or conduct disorders.

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A flight reaction or a freeze reaction...

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These are often so quiet that the anxiety piece of the reaction gets missed.

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So,

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my experience is that anxiety is more prevalent than it might at first seem in autism and it's also true,

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however,

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that I should keep in mind that people do seek appointments with me when they have a season of struggle,

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they're coming to a clinic setting because something has really hit them at a time that they need input.

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And so it's certainly true that my point of view might be skewed as far as working in this particular setting.

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Now, rather than going through each anxiety disorder separately as listed in the diagnostic manual,

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let's consider the grouping of generalized anxiety disorder,

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social anxiety disorder,

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separation anxiety, and agoraphobia together.

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It's easy to see that individuals who have this baseline anxiousness, and as I said...

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some of which seems to be neurobiological degenerated,

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that "my system really leans toward anxiety,"

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that this could easily be diagnosed as generalized anxiety disorder.

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The social anxiety disorder.

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Again,

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very understandable why the individual on the spectrum may have anxiety related to social interactions and possibly being evaluated negatively.

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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,

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"Yeah,

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that really went well,

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I feel calm and confident about my social interaction."

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So that can lead to this anxiety that brings them in for assistance.

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Separation anxiety again could be seen in the autistic individual.

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It's often the case that the person on the spectrum would really love to feel safe and connected with someone who's supportive.

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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.

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And agoraphobia is also something that could be diagnosed for the person on the spectrum.

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In the sense that this could be a person who doesn't like to leave their home,

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feels overwhelmed in crowds,

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wants to be in their own space and just have time alone in their own setting.

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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.

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The problem ends up being not that those features aren't present.

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For example there is a social anxiety,

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there is an agoraphobia.

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However,

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once those are diagnosed the diagnostic picture stops.

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So um, they don't say "hey, we should also look for autism." And that's the piece that's difficult.

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We want autism to be in that differential at the beginning.

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For more information on differentials and what that means.

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See the first episode in this series.

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But essentially what we're saying is that if someone is being evaluated for a diagnosis of generalized anxiety,

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social anxiety,

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separation anxiety, or agoraphobia ... there should be a trigger in our minds that also puts autism in that assessment process.

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The current edition of the diagnostic manual does not include PTSD or OCD

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under anxiety disorders.

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Instead the manual gives these their own sections including trauma and stress or related disorders, and obsessive compulsive and related disorders.

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However,

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for the cohesiveness of our talk,

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I am going to include them in this episode on anxiety.

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With regard to PTSD,

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you may wish to refer to my previous episode entitled Abuse, Neglect, and Relational Pain

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On the Autism Spectrum in May of 2021.

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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,

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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.

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This difficulty can be quite a struggle and it can be very externalized.

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So the child may be crying and not sleeping.

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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,

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the caregivers of the child may also struggle to get enough sleep, to stay calm...

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This may lead to difficult interactions both emotionally and psychologically ... and sometimes physically,

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The individual on the spectrum may also struggle to recognize risk interpersonally... when they do encounter this.

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So for example,

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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.

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There are other reasons that individuals on the spectrum may experience trauma. And PTSD may not be a misdiagnosis at all.

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However many times once this diagnosis is entered in someone's chart,

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once it's made... a lot of times,

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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.

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Now ... sometimes the trauma has been so extensive that trauma and neurology just can't be teased apart very easily.

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But more often there has never even been a consideration of autism.

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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.

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Now there are seven diagnostic criteria for autism and the first three are social in nature.

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They all must be met. And the last four are described as restricted and repetitive patterns of behavior.

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Only two of those need to be met.

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Now these criteria include elements of thoughts and behaviors that can be labeled as OCD

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if someone's not looking at the big picture.

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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,

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what's right and wrong.

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This can include literal thinking.

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For those on the spectrum.

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They may correct others when they're wrong about something and get upset when people break the rules.

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They might want to get all the details correct

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rather than being able to move on to more important things.

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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.

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They may care about symmetry and repetition.

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So this focus on repetition and ritual can resemble OCD

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Which can mean that the diagnosis of autism is never explored.

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So now,

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if we step back and we think about all the episodes in this series,

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we can see how an individual who presents with a history of multiple diagnoses,

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let's say social anxiety disorder,

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bipolar disorder,

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borderline personality.

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Well,

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they may actually have one diagnosis that has never even been considered and that is autism.

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Now,

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before we end this series entirely,

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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,

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particularly those perhaps with adults,

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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.

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Since I've emphasized evaluation and differential diagnosis so much,

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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.

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Now,

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autism is identified by a specific pattern in the results and for many reasons,

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there will be subsets of patients who present without a clear pattern of features and this may reflect how complex their background is,

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how much distress they're in.

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But if an autistic pattern is not present or it's obscured by other issues,

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then the clinician will not be able to rule in or out the diagnosis of autism.

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And rightly so. Now,

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ultimately,

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our first goal needs to be that autism is included in the differential assessment process.

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The second goal is that everyone has a correct diagnosis,

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whether that's bipolar,

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social anxiety, or autism...

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Now,

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if the autism pattern is not clearly present,

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a diagnosis can't and shouldn't be given.

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Some individuals will receive feedback that the autism pattern is clearly not present and this is an important piece of information for them.

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Others will receive feedback that autism features are present,

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but not all the criteria are met.

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So a full diagnosis is not made.

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Third,

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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.

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Lastly,

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about 2% of individuals will receive the feedback that they meet full criteria for autism.

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Whatever the conclusions are, dedication toward including neurology in the assessment process,

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for example,

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including autism in the differential ... it can add to the self awareness that clients receive and awareness is key to well-being and growth.

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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,

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but not their whole experience.

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And autism is one of those big picture diagnoses.

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Thanks again for listening,

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and I hope you join me next time.