Since the beginning of the new year I have realized that I might have high-functioning autism. I am currently unclear about two things: how I would find out if I do and whether it would matter if I do.
This isn’t the first time I considered the possibility that I might be on the autism spectrum. When I was in undergrad I realized that certain of my traits–discomfort with eye contact, inability to interpret physical touch, minor social awkwardness, occasional bluntness and tone deafness, intellectual obsessions–were typical of autism or resembled symptoms of autism. But whenever I researched it I found that I didn’t have certain traits you would expect of someone who was autistic: not only did I pretend play a lot as a child, it was neither repetitive nor focused on a consistent topic; I am more than capable of interpreting tone of voice and reading implied content in speech; I am about average at interpreting body language; my verbal communication skills are better than usual. By my best understanding of autism at the time, I did not qualify, so I stopped looking into it and stopped thinking about it.
However, I’ve learned a bit more since then. One of the things I’ve learned is that autism is still poorly understood and that what traits are required for a diagnosis is up for (some) debate. Moreover, I’ve learned that adults have often found ways of compensating for symptoms of autism; if they learned these techniques unconsciously, they might not be aware that they are using work-arounds. This discrepancy between an ideal case of autism and what autism might actually look like prompted a particular Twitter user to create a list of traits common to people with autism that don’t appear in most diagnostic lists. It was her opinion that a person who exhibited half or more of those traits was autistic; indeed, there was one trait that she considered properly diagnostic, such that anyone who exhibits it is autistic regardless of how they answer the other items on her list.
I won’t be coy. I answered yes to the diagnostic question. When I first saw it I was very skeptical that the question was really diagnostic–indeed, I’m still skeptical–but I took it seriously enough that I worked through her list. I answered for how I act right now and got exactly 50/50; if I answered for childhood, I would probably have had just over 50/50, but distributed differently. That was high enough that I started to take it seriously.
Online diagnostic quizzes indicate that I am not autistic but, again, I am now an adult and I might have developed ways of compensating. If those compensations are effective, the tests would falsely designate me as allistic. These quizzes always have variations on three questions that direct me away from an autism diagnosis: I do not feel like I am “out of place” (ie. living in the wrong century); I engaged in frequent active pretend play as a child; I am fully capable of deep engagement with fiction. But the reason I do not feel like I am living in the wrong century is that I am skeptical that I would fit in better in any other social arrangement. I did some research and found plenty of parents reporting that their autistic children engage in pretend play. Finally, although I am capable of being fully engaged in fiction, I rarely identify with characters; this seems like it might be the actual salient difference. It seems that it is easy to explain how I might be autistic and still answer the way that I did.
I cannot explain in the same way how I find it easy to read facial expressions and tone of voice. Or, at least, I think I find it easy. I cannot compare my experiences with a confirmed-allistic person; that’s the nature of subjectivity. And perhaps I have built strong workarounds. Or perhaps there are more forms of autism than represented in the materials I’ve read. Perhaps there are forms of autism that just affect the ability to read communication through touch (at which I am almost completely illiterate) without affecting the ability to read inflection and facial expression. I don’t know.
My first response, after reaching the conclusion that there is a chance that I’m autistic, was to wonder what difference it would make if I was. If I was autistic, autism would not be what I thought it was. My self-knowledge would not have changed; my knowledge of the categories is what would have changed. The symptoms–aversion to eye contact, inability to interpret touch and subsequent aversion to touch, intellectual obsessions, weird pattern-based habits, occasionally bluntness, hyperactive barrier maintenance–would remain the same. I wouldn’t really understand them differently. They would just add up to something else.
I am not the first person to think about this. I have had a friend come to me with a very similar story; it seemed to me at the time that being able to categorize it would be some help in itself. Now I’m not sure. At the time I was working analogously off of depression: it helped me to be able to name my mental illness rather than simply observe symptoms. But the reason it helped me to name it is that I then no longer a) blamed myself for the symptoms or b) expected the symptoms to clear up when my circumstances improved. I had a different causal story for the symptoms and that meant I approached them differently. Rather than simply resolving to be better or indulging myself in melodramatics, I sought treatment. However, when I first started thinking about this I did not think I blamed myself for any of the symptoms which might be autistic, nor did I expect any of them to change. Since I don’t know what causes autism, I didn’t gain a new narrative. What benefited me about collecting depressive symptoms under the “depression” category wouldn’t apply to possible autistic symptoms. Or so I thought.
I ran this by a friend with Asperger’s and he said that an autism diagnosis can be helpful when entering a romantic relationship. You can talk to your partner(s) and explain that you have such-and-such traits which you cannot change that might make the relationship difficult; you can also then work on ways to mitigate or work around those potential problems. If you do not have that autism diagnosis, it might be harder to convince your partner–or yourself!–that you really can’t change these traits and that you need to focus on mitigation, not on “fixing” them. I can see the merit in that. I’m also functionally aromantic and grey-asexual at the moment (as a consequence of depression, I assume) so that’s not a pressing concern. Of course, with continued treatment this might change and furthermore there’s no particular reason to suppose that these conversations must be limited to romantic relationships.
This friend also told me he had always assumed I was on the spectrum, so there’s that. When I told my Mom about my questions, she was not at all surprised. “We always thought you were a weird kid,” she said. “We never really wondered what made you weird.”
This whole consideration was of some minor theoretical interest to me because it’s a good example of an issue I brought up when I was talking about categories and patterns: if I am going to call something “real,” I expect it to refer to a relatively robust pattern of phenomena; if I am going to bother to call something “real,” I also expect that designating that pattern will have some use for me. There are lots of cross-cutting patterns which are equally reliable; choosing between them is not (necessarily) a question of truth but rather one of usefulness. Since I wasn’t convinced that determining this pattern’s reliability was going to be useful to me, I wasn’t sure if it was worth pursuing.
However, in the last few weeks I’ve reconsidered. Perhaps it would be useful to determine whether I have autism. Lately I have been struggling with executive dysfunction–nothing debilitating or especially intrusive, but enough that my overall quality of life has eroded and that I do not engage in nearly as many activities that I find fulfilling. That it has been worse lately suggests it has more to do with mental illness, which is often in flux, but it is also true that I have always struggled with elements of this. If I knew whether executive dysfunction was a symptom of depression or of autism might help me deal with it. (Or it might not. I am not optimistic that I will be cured of depression, so would it matter if the source of my executive dysfunction is chronic rather than congenital?)
I have realized, then, that research into the ways autistic people deal with stressors might perhaps prove useful to me. My brother suggested something along these lines: knowing that I am autistic might allow me to make connections in real life or (more likely) online, and these connections might prove useful. And if I consider this, then it might be the case that I have some obligation toward that community, or potential community, on the grounds that I am autistic… iff I am. To deny that I am autistic or to simply avoid considering it might, in the case that I am autistic, mean that I am however indirectly contributing to the stigmatization of autism; to claim that I am autistic might, in the case that I am not, misrepresent a stigmatized group. It would be easier to avoid a misstep if I knew.
Finally, if it turns out that I am autistic, then I will not have just misunderstood autism; I will also have misunderstood allism. After all, I had thought I was allistic and had understood allism mostly with reference to myself. If I’m not allistic, then I am much less informed about most people’s experiences than I had realized. Understanding other people’s experiences is very important to me.
Mostly I am comfortable with this uncertainty: I can live well enough not knowing. But I am slowly coming around to the idea that there are some good reasons to settle the matter, at least somewhat.
I am not sure how to proceed from here. If you have any well-informed advice or criticisms, I would be happy to hear them; if you have uninformed questions or tangents, I would like to hear those, too.
- I looked carefully at the difference between high functioning autism and Asperger’s and I have concluded that if I have either, I have high functioning autism. Just one example: I was clumsy as a child, which is more indicative of HFA than of Asperger’s.
- The item was, “You might be autistic if you get ‘old embarrassment syndrome’ you remember something you did 20 years ago & feel like you’ll expire from mortification.” I would be interested to know if neurotypical readers have experienced this, because my guess is that this is not diagnostic after all. Of course, you may think you are neurotypical when you in fact are not.