Autism, identity and disability

posted by Jeff | Friday, October 21, 2022, 3:30 PM | comments: 0

I've had this post in my head for awhile now, and I've wondered how exactly to approach the subject. Maybe it's easiest to start with a personal story. Like a lot of people, I've been alarmed by the way a minority of people seem to be hell bent on hate and discrimination toward people not like them. It's not a new phenomenon, but I thought we mostly chased those folks off to the fringes of society. Now some have cable TV shows. I've described how this causes stress for me, and my therapist believes that this desire to be an ally to those who are marginalized comes natural to me because I also feel that I've never quite belonged. She's probably right, even if that's a hard thing to realize, let alone accept.

Indeed, I'm a white, heterosexual male, of no particular ethnic identity, raised (though not practicing) Christian who is very firmly at the high end of the middle class. Whatever difficulties I've had in life, none of them were really fundamentally tied to who I was, and I've not faced the obstacles of any of the groups that I'm not a part of. But then last year a psychologist confirms that I have autism spectrum disorder, and everything about my life to date is seen through a different lens. Immediately I sense that this will become an identity issue for me in some way, depending on how much I accept it and am willing to talk about it. And through that new lens, I feel like some of the difficulty I've had in adult relationships of all kinds, personal, romantic and professional, stems from this thing that I always was.

I'm not at all suggesting that having ASD on your chart is the same as, say, being Black in America, for example. No one has ever deliberately discriminated against me for it because they most likely don't know I have it. Making it an issue of identity then is an imperfect arrangement because while it was something I was born into and can't change, I can hide with it in plain sight. And yet, if you go down the rabbit hole of advocacy and awareness, there are people who very much get offended if you don't see it their way. I once had a conversation with a coworker about the way "we" might approach certain problems, and she told me that "we" prefer to be referred to as "autistic." Weird, because I didn't get to vote on that measure. It's certainly easier from a word economy angle, compared to "autism spectrum disorder" or "on the spectrum," but shit, I'm not in a place to be offended regardless. There's no escaping that it is an identity issue, as imperfect as it might be.

And yet, the words do matter, whether I like it or not, as the goofy YouTuber from the Holderness Family points out, ADHD has the words "deficit" and "disorder" right in the name. I have that, too. So I have two things with "disorder" in the name? Am I broken in two ways? Think about how we talk about this sort of thing. ADHD is usually referred to as something one "has," which is somewhat reasonable because you might be able to manage it with medication. But autism isn't something you can cure, it's what you are. You are on the spectrum or you are autistic. It's not like a medical condition. We don't say that people are cancer.

This eventually leads to the topic of disability. This one is also a can of worms, since ASD has an incredibly broad definition. It is clinically described as a developmental disorder that affects learning and social development. But as we know, the outcomes associated with this are insanely broad, to the extent that most of the people that have radically changed the world would likely fit in that spectrum, but so would people who can't care for themselves or function in society on their own. What do you do with that? History's greatest scientists and artists certainly weren't "disabled." Where I land on this topic, especially since I see Simon going through some of the same things that I did in childhood, is that we learn in different ways, not deficient ways. The challenge for the neurotypical is to try and understand what those different ways are, which is at best an uphill battle.

To be self-aware, sure, we may make that distinction around learning differences in part because we don't want to be labeled with a defect. But there is also a threshold where the differences may be so difficult to understand that they may be insurmountable for parents, educators and a society at large who wants to help. Referring to an individual as some level of "normal" is frankly offensive and like nails on a chalkboard, but "high functioning" isn't really any better, since it implies an opposite of "low functioning."

The challenging parts of this condition can manifest themselves in a million different ways. One way, for me, is that I have to be early for anything related to travel, unreasonably so. Whether it's getting in the car by the time I've determined is optimal, or early to the airport, or among the first on a cruise ship, it's an impulse that I find difficult to control. I need that structure and predictability, because without it I imagine a cascading series of events that will cause me to miss out on something. As an adult, I've learned to cope with deviation from travel plans, but I can't put into words what it does to my sense of being in the moment. I know I've lashed out at people in these situations, and even when I haven't, not being on schedule feels like being trapped in a box, unsure when I can get out. That shit is real for me. Am I disabled? Not really... I'm still going to get to my destination.

More controversial is something like the "disability access service" at theme parks. We enroll Simon in this, because queueing can be difficult in unexpected ways. Even with that access (you tag in on the app and they give you a time to return, like old FastPass), we had an issue as recently as last month where he had to bail on a ride because even the shorter wait was long enough for the thought to develop that he might lose his souvenir popcorn bucket on the ride. He was almost in full meltdown. As frustrating as that is for me as a parent, I get it, because it's not that different from my travel stress. He's just wired differently, and with time, hopefully he learns to cope with stuff like this. It doesn't go away, we just figure out how to mitigate it and function in the world. Is that being disabled?

It's hard to generalize about the way autism affects people, which means that neurotypical people probably find it even harder to identify autism or how to roll with someone exhibiting behaviors associated with it. I do think that there are two things that we can get better at. The first is that we have to stop looking at autism as a defect by default. I understand that some portion of people on this spectrum will not be able to cope to the point of self-reliance, but again, for many it's a difference and not a deficiency. Einstein wasn't stupid, he was different. If we accept and accommodate the differences, it then makes it possible for people living with the condition to practice self-awareness and attempt to find their developmental and learning lanes. Being wired differently shouldn't be exclusionary.

I know that I have no intention of being quiet about it. I wish I would have endured the diagnostic sooner, because the math of the non-belonging my therapist and I talked about at least makes sense. I'm not looking for pity or a hug, I just want to be real. I want you to know that I intend to use this self-awareness to evolve, and advocate for broader understanding around the many things that autism is, or may be, for the people around you.


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