It’s going to take some time for popular culture to digest and assimilate all of the progress that’s been made recently in the scientific and medical understanding of autism. In the meantime, those of us with so-called “mild autism”¹ will have to figure out good ways to cope with the well-meaning, but frustrating and inadvertently invalidating responses of all of the otherwise good people we know and encounter who have not yet had the opportunity to update their understanding of Autism Spectrum Disorder (ASD).
And these people are not all neurotypical either. A few months ago I met a fellow aspie who quite sincerely thinks his autism was caused by a vaccine; and I know at least two individuals showing strong autistic traits who both think I’m being ridiculous even for suggesting they may actually be autistic. And I have to include myself in that group as well. Eleven months ago, just prior to my own ASD diagnosis, I had self-diagnosed and sought psychiatric help for what I was sure was some sort of Bipolar Disorder (BD). But following a full day of psychometric testing and clinical interviews, and after my diagnostician told me that that she didn’t really see BD, but what she did see was some version of autism — “what used to be called Asperger’s Syndrome”, she said — I was quite skeptical. “But I feel empathy!” I objected; and “I have a great sense of humor!”
“Those are just stereotypes, ” she explained. “What they’ve found is that there is a lot of variation in the way autistic traits manifest in people.” Since then I’ve come to a much richer understanding of what that actually means. Having autism is something like being a bird, and when most people talk about birds, they probably have in mind one or two particular kinds of birds, like maybe sparrows and robins; and they really need to be reminded that ostriches and penguins are also birds, as are flamingos and vultures, even though they all seem strikingly different from each other, and especially so from sparrows and robins. Something similar is true of autistic people. If all someone knows about autism is what he or she learned by watching Rainman or Big Bang Theory, then his or her understanding is analogous to that of someone who learned about birds by studying just sparrows and robins. The first time such a person encounters a hummingbird or an ostrich, a response of “but you don’t seem like a bird” is nothing to scowl at.
Since being diagnosed with ASD, I have been confronted with this issue in various ways. I actually got fired following an attempt to obtain reasonable accommodation on my job; I have been accused of trying to shirk responsibility for my unruly behavior — of “blaming my diagnosis”; I’ve been accused of malingering; and I have been told that I don’t “seem” autistic.
I won’t pretend to have the last word on the topic or to have figured out anything like the “best way” to handle these kinds of frustrations, but I do feel confident that anything angry is a waste of time that will likely backfire in some way, making everything a lot worse. As I explained in a separate post yesterday, I believe rage has failed us in general, and I have utterly given up on any rage-based problem solving strategies. Needless to say, the next time someone tells me “but you don’t seem autistic”, I will not say anything like this:
¹I put quotes around the phrase mild autism to signal that my own “mild autism” has had quite a non-mild effect on my life and relationships; a fact I believe would be readily confirmed by the many people I have shocked, worried, annoyed, frustrated, irritated, confused, infuriated and otherwise alienated over the course of my life.