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A Few Reasons We Go Undiagnosed, Part 1: Special Interests Beyond the Stereotypes

How many autistic characters have you seen in the media? A character on a favorite TV show, or from a movie? How often is the whole show then about autism, rather than a show that just happens to have an autistic character or two?

One thing I've noticed in autism groups and forums is enthusiastic discussion of television/movie characters who, while not officially autistic, seem like excellent representations of the autistic experience. And while I acknowledge that we can't really know if someone is autistic without a comprehensive evaluation, the popular enjoyment of armchair diagnosis raises some really interesting questions: If these characters (who are entertaining and well-loved by autistic and neurotypical viewers alike) seem to fit the criteria for autism diagnosis, why isn't the media more full of canonically autistic characters? Why do we only get an "official" acknowledgment of autism when the character is a white male savant with the most stereotypical symptoms? Of course any minority struggles to get representation in popular media, but uniquely, autism seems to be depicted regularly -- just without any acknowledgment.

The lack of diagnosis in beloved fictional characters mirrors the experience of many autistics in the real world: we exist, but anyone who doesn't fit the stereotypical presentation continues to live an autistic life without the label to understand themselves. While autism is not innately a negative, experiencing autism without diagnosis is like trying to play a game using the wrong rule book; actions never seem to lead to the expected outcomes, even the best-planned strategies result in failures, and you're left thinking you're horrible at the game, rather than knowing you've just been given the wrong rule book.

I sincerely believe that most professionals have the best intentions; most doctors may not know that autism can present in any profile other than the example from their textbooks, elementary school teachers may really believe that autism only happens in boys, or always presents with intellectual disability, or must come with rocking and hand flapping and an obsession with numbers and trains. And television writers, for that matter, probably have no idea that their characters fit all the diagnostic criteria for autism -- I mean, even most doctors don't know it! After all the videos shared by parents of autistic children showing a child's violent, public meltdown, what professional, let alone lay person, would guess that the quiet girl in their class might benefit from a referral for evaluation?

This post is about a few of the stereotypical symptoms, and how they can present. I try to address how so many of us -- in reality or on television -- can be autistic without anyone seeming to notice. Whether it validates your own experiences, or leads a professional to reconsider their definitions of autism, I hope that it helps.

Special Interests Can be Common Interests Experienced to an Extreme.

I hate that this seems to surprise people. I hate that somehow, a psychologist can sit with a copy of the DSM in their hand, and totally miss the part where it says "highly restricted, fixated interests that are abnormal in intensity or focus." Intensity OR focus. OR. Not AND. OR. Intensity OR focus. Oh, I already explained that clearly? Well, so did the DSM, and somehow people ignore it, so I figured my blog post should be really, really explicit. So, just to be sure everyone is on the same page: for diagnostic purposes, the special interest can be an unusual topic, OR it can be unusual in the way the topic is approached. Cool? Cool. 

Perhaps the best-enjoyed characteristic of autism is special interests: they're fun, they're exciting, they make the autistic feel good, and they even make a good plot point on television. I knew one child who took great enjoyment in memorizing and reciting his teachers' license plate numbers; Sheldon Cooper on The Big Bang Theory enjoys trains; Sam, on Atypical, enjoys Antarctica; and Abed Nadir, on Community, loves movies. The commonality between special interests is not what they are, but how they're experienced; an autistic with a special interest usually engages with their interest during every free moment. We experience disproportionate distress when required to disengage, and often the special interest remains in the back of our minds and creeps into our conversations even when we're doing other things.

In the stereotypes, a special interest is obscure, an interest others will rarely share; it stands out as awkward or different if mentioned conversationally. This expectation can be incredibly problematic for someone whose special interest is a popular fantasy series, a common and age-appropriate hobby, or something too broad. I've encountered several autistic women who, when young, indulged a special interest in school; this was my own experience as well. When I was 5 years old, I started begging my parents to let me use the my father's computer to look at college websites; I insisted on scouring Harvard's page, looking for words like "price" or "cost" so that I could calculate how many pennies I needed to save per year. I remember the first time I realized that teachers could get mad at students: was when I asked too many times for extra homework (while she was trying to juggle a classroom of 24 6-year-olds). I wanted to skip recess to practice my handwriting, I completed the whole spelling textbook within the first week of classes each year, and I would teach myself most of the math months before the teacher got to it so I could keep working my way through the practice workbooks.

To most people, a child like me looks ambitious, bright, enthusiastic, and motivated. It may go totally unnoticed that she can't disengage from schoolwork; it might seem to be a quirky personality trait that when left to play with peers, she'll find a wall to stare at so that she can pretend to shop for college textbooks, or a piece of paper to scribble on to pretend to be taking notes. A productive special interest seems like a healthy one, and habits that would raise concern on other topics (such as skipping meals, or neglecting social development) inspire praise when the goal is admirable.

I'm not the only one who had a broad special interest; I knew a girl in high school whose special interest was writing; she had a single book series which she was working on for all the years I knew her, filling dozens and dozens of notebooks with her writing, and pausing only to draw her characters. Some autistics choose anime, or video games, or DND, as their special interests. Again, these people get classified as "nerds," and needs go unrecognized. Furthermore, autism can become unhealthy when a topic which depends on moderation, like weight loss, becomes a fixation; the correlation between Anorexia and Autism is 
well documented (though still little understood), with hyperfixation serving as one of several shared symptoms. 

Of course I'm not saying everyone who likes these topics is autistic. What I am saying is that it's the manner of the interest, not the topic itself, which distinguishes an autism symptom from a common passion. When a special interest is too broad, people fail to classify it as a special interest. This is true not only in the general population, but also in the diagnostic realm; when I explained to one psychologist that my childhood special interest had been school, he told me that special interests have to be unusual, like engines on trains or battle ships from a specific era. Not only was he wrong (*cough*checktheDSM*cough*), but he was contributing to harmful misinformation. This sort of thinking distances autistics from the neurotypical world, assuming that we cannot enjoy the same activities and cannot relate to the same interests. It perpetuates stereotypes, and worst of all, it prevents diagnosis. Experts in autism acknowledge a diverse range of special interests, and some suggest that these mainstream special interests are especially common in girls -- perhaps contributing to their underdiagnosis.



Special Interests Can be People
When I first discussed with a psychologist the possibility of my being autistic, we worked our way through the DSM-IV; some things were so obviously me she didn't even bother reading them off, but a few characteristics she asked me about. One was circumscribed interests (sometimes affectionately called special interests); I knew that I got obsessive about things, and I could list a few past special interests easily (for example, how many children spent the entirety of 5th and 6th grade knitting constantly -- even in class -- talking exclusively about Sherlock Holmes, and refusing to speak anything but Pig Latin?). But in the last 6 years, aside from perhaps foreign languages (to which I didn't devote nearly as much time as I had past special interests), I hadn't really had a topic that brought me to life that way. After a few minutes of thought, I asked, "Can people be special interests?"

I remember her eyebrows going up in apparent surprise, and she asked me to elaborate. "Well... since 7th grade, I always have one friend at a time, always a guy but usually not a romantic interest. And I'll get up early before school in the hopes he'll be online to instant message with; I'll find him for the 30 seconds we can chat between classes; we'll leave notes in each others' classes so we can 'talk' during class, we meet up to walk to the school bus together after school, then when I get home I'm messaging, texting, or on the phone with him until my parents insist I hang up. If my parents force the conversation to end without warning, I'm paralyzed for a while and can't focus on anything else. If I'm not talking to that friend, I'll usually be talking about him. These friendships usually last 1-2 years each, and when one friendship ends I can't do anything except the bare minimum for a while, until I make a new friend and the same thing happens."

She said she'd encountered autistic women who had similar experiences before, but had never heard them described as special interests. Then she asked me a few questions, which I now realize was probably to consider Borderline Personality Disorder: did I have intense emotional reactions if that friend didn't want to talk one day? (I'd be thrown off by the change to my routine, but I didn't get angry with them or anything, no...) Did I idealize them? (No, they were usually actually people I saw as heavily flawed, honestly I wished I got that way about people who were healthier for me but I didn't seem able to control it much.) Did I worry about them rejecting me? (I mean, they're usually my only good friend at the time, so rejection would be painful, but not to a degree where I'd do anything unreasonable to keep the friendship -- I'd refused to kiss one when he made romantic advances, even though that ended the friendship for a while.)

Since then, I've gotten to know many autistic adults -- especially women -- who describe similar experiences. I remember printing and saving favorite instant messenger conversations with my special interest person, spending time that we weren't talking rereading them. Looking back, if people had known the degree of attention I was putting into those friendships, I would have been perceived as inappropriate and unhealthy. And, in some ways, it was unhealthy, but mostly for me.

When an autistic has a special interest person, we generally don't have any expectations of that person. They're often not a romantic interest; we don't show up at their door uninvited; we don't violate their privacy. Rather, we fixate on the friendship with that person, and on what that person has shared with us. We might be able to recite conversations from months ago by memory, or know all the person's favorite things. For ourselves, it's a source of energy and inspiration; for them, it makes for a very supportive friendship (and some pretty great birthday presents!).

When a woman who has a special interest person is evaluated by a psychologist, the first diagnosis is often Borderline Personality Disorder; a second thought rarely follows. Unfortunately, BPD can be an unproductive and even potentially harmful diagnosis when inappropriately applied to someone autistic. The interventions for BPD often focus on learning to cope with emotion, reframe interactions to interpret them more healthfully, and turn interpretation of the relationship inward; for an autistic with a special interest person, this encourages perseverating on our feelings regarding the friendship, frames our authentic emotions as potentially problematic (which, regarding a special interest person, they probably aren't), and fails to identify the source of our real challenges.

I want to acknowledge here that it's rarely healthy to have a special interest people; not many people are comfortable receiving the amount of attention and focus that comes from being someone's special interest, leading autistics to often become hyperfixated on an unhealthy or abusive friendship. In some cases, the dangers are purely emotional -- some hurt feelings, being taken advantage of; in other circumstances, the result can be sexual assault, physical abuse, and significant trauma. I've had each kind of special interest person; there have been occasional small perks, but primarily negative outcomes, including PTSD. I don't doubt that some autistics find truly wonderful partners or friends who are able to receive the attention in a healthy and reciprocal manner; but, if you are an autistic with a special interest person, I want to encourage you to look critically at the relationship you have, and consider whether it's truly a positive in your life.

Whether the special interest person provides a positive or a negative experience in friendship, special interest people do tend to have one common negative outcome: eliminating all thought of autism among diagnosticians, and parents and teachers see a special interest person as evidence of healthy social development. And of course, many clinicians believe that autism presents as a total lack of friends and relationships. Those responsible for providing diagnosis often look for narrow interests that are unrelatable and without evident value. Not only is a special interest person unlikely to get categorized as a circumscribed interest; they may also be used as evidence against social challenges, all but guaranteeing that diagnostic criteria for an autism diagnosis do not appear to be met.
In part 2 of this segment, I will talk about the many presentations of meltdowns and stims. These symptom categories are, in my opinion, the most misunderstood components of the many profiles of autism. Whether you are an autistic looking for vocabulary with which to describe your experience, a clinician seeking to learn about the autistic experience, or a researcher considering the ways that autism still needs exploring, I hope that this post has been helpful to you, and look forward to sharing with you again soon!

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