My disconnect with autism and identity

posted by Jeff | Monday, October 9, 2023, 3:30 PM | comments: 0

The documentary series Welcome to Wrexham had a new episode about one of the players' struggle with having a young autistic son, and a teenage fan and her ability to belong. It was exceptionally hard for me to watch. It also creates a wave of contradictory feelings and frustrations. It's hard to unpack, but I'll give it a shot.

I first have to acknowledge that, being a spectrum disorder, no two people are the same. Clearly I'm not non-verbal or incapable of taking care of myself, and neither is Simon. When I see stories like those in the TV doc, I simultaneously think, that's not me, but it is, and I get it. How ironic, because if you can find one common thing among us, it's often (and still not always) that situational reconciliation is sometimes impossible. In other words, something clearly exists in a certain state, but it shouldn't. My bike couldn't have been stolen, because I bought it, and it isn't right to steal. Simon can't accept being grounded because he can't connect the consequence to a negative behavior. A man who mocks the disabled can't be president. I can't have autism if that's what autism looks like, but I do.

I obviously advocate for awareness of the condition, battle its misconceptions, encourage people to see those who seem different as valuable. But I go back to the fact that I'm not like, really anyone. I'm not Rainman, I'm not a genius like Einstein, I don't flap or obviously stim, I suck at math, I'm verbal and can engage in self-care, I'm not funny like Dan Aykroyd (who really was the first SNL host with what was previously called Asperger's), I don't associate with the behavior of Elon Musk (though people really don't get his intent behind the negative behavior). There's all of this autism out there, but I don't relate to it.

But I know that what's different is the traits that I and others exhibit. You don't use the term "symptom" because that implies an illness, and I don't feel ill, nor would I accept anyone ever telling me that I have an illness. I think that's my starting point. There are more universal traits that can be applied to a majority of ASD folks, but still not all. Relationship development has always been difficult, though now I consider it easier and understood, but exhausting to put that knowledge into practice. Thank God I never have to date again. I do get intensely focused on certain things, and it's hard to pull me away when I'm in that zone. I do have my routines, but they're narrower in scope than they used to be, mostly with food. And I'm definitely one who craves certain sensory stimulation (loud music, touching textured surfaces) and physically retract from other things (cold, the smell of bacon and fabric softener, screaming kids).

Sometimes I find there are random people on the Internets that I can identify with, fitting in similar boxes as those above. I bring that up because, since the range of traits is endlessly vast, identity is rarely something that I share with others. It's simultaneously not like being in a marginalized demographic, yet it still requires advocacy. It's so weird.

I can tell you that I now recognize a certain aspect of my personality better. I don't think I've ever actually cared about what people thought about me, at least not in my post-high school life, but I do seem to care when people simply think that I'm something that I'm not. That's an important distinction. I don't need to be liked or admired, but it grinds on me if I'm misread. The intent of my behavior and actions may be completely different from what one would expect. I guess that's a long way of saying that I don't like being misunderstood.

What do I do with all of this? I don't know. Obviously I'm willing to talk about it and not pretend I'm neurotypical. I serve on the DEI council at work, for all the usual reasons, but also to represent the people with autism traits. I'm not broken or ill, but I am wired differently. I often hear people say that certain people with ASD make them uncomfortable. Imagine how we feel.


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