Destigmatizing Autism

As I have watched younger generations of autists get diagnosis nearly a decade after my late diagnosis at nearly age 50, I am filled with a mixture of hope, relief, and yes, some jealousy, too. I recognize that this is partly because the autism of my childhood in the 1980s was an ableist nightmare view of difference. The move Rainman was a pretense at understanding autism and making autistic people look more human. I suppose it was better than what came before. But it fails on multiple levels, including the reality that it makes the argument that autists are OK, really, because they have superpowers. The “superpower” argument has had a pretty significant effect on me. Other people sometimes call me out on it (rightly so) because I am still struggling with the attempt to convince an ableist world that yes, I deserve to be treated as human even if I’m autistic because my autism has “good traits” that are useful to society. Yes, Dr. Asperger’s, I’m one of the autistic people who deserves to be saved from the gas chambers of Nazi Germany because I can help the Reich. In addition to being gullible and submissive (at least in my childhood), I am also very intelligent and good with numbers. I learn quickly and can work a “regular job.” Please don’t kill me.

Autistic people of a younger generation than mine are sometimes baffled by my defensiveness on this point. They don’t feel the stigma of 1980’s autism. They don’t seem to feel the need to perform at superhuman levels to prove their value to society. And I’m glad for that. I truly am. I’m not sure that I can take any credit for it, though God knows one of my main goals in life since my diagnosis has been to try to write with the gift I gained about autism at a level that can help other people understand both their own autism and the autism of the people around them, and to make everyone see that there is humanity even in the most stereotypical “negative” autistic traits, from meltdowns to head banging and lack of affect or expression. I want to show that autist actually can have great empathy, if you can see the world from our point of view for just a moment. In some ways, I try to show that actually, there is just as much lack of empathy in neurotypical response to autists as there is the other way around. Understanding is key for all of us.

I’m also glad that I have come to understand the wider umbrella of “neurodiversity,” including ADHD and HSP. I spent my first stage after autism diagnosis wavering between hating myself and trying to convince myself I was worthy of remaining alive because I didn’t have any of the “bad parts” of neurodiversity. I had very good executive function, thank you very much. I was great with schedules and sameness and if I was rigid, at least I was predictably so. I kept doing my schedule even when my daughter died and I keep doing it the minute after I wake up from surgery and the day after I finish a full Ironman. That means I’m a good autist, right? I’m the right kind that masks and hides her disability enough that a lot of people who meet me think that I’m silly to call myself autistic and that really, I’m just smart and why am I complaining about that? I’ve slowly begun to understand that the “bad” neurodiverse traits like the distractibility of ADHD, the “unreliability,” the “creative sense of time,” and the “mind wandering” are actually all parts of my autism. And they aren’t bad parts at all. They are part of me. I don’t have good parts and bad parts. Just parts that society thinks are useful and not useful. That’s society’s problem, not mine.

I should say thanks to younger autists for having a bad-ass attitude about autism that I have gradually been learning to imitate, at least until it’s fully my own. I have become more open about my diagnosis, even at work, something I thought at the beginning that I would never do. When people say that I don’t seem “autistic” at all, I try to remind them of all the traits they already know about me that are actually autistic. “But you seem so normal.” Yes, I am very good at masking. It takes a lot of effort, but if you see me remain in a corner or leave a room, that is sometimes because I get overwhelmed by sensory information, particularly noise and smell. I need a lot more time alone than most people do. My friends sometimes remember this about me. If they spend enough time with me and I start ignoring them. Friends also notice that I don’t reach out as much as they might think is normal. It’s not because I don’t like them or because I don’t need social interaction. I just need nudges a bit more. If I don’t respond to a text in a normal timeframe, you might need to nudge me. If I respond weirdly, I might not understand why. I don’t always get the give and take in conversation that other people think is normal. I don’t laugh at the same jokes, but that doesn’t mean I don’t like humor. I just struggle with justice issues and really dislike humor that feels demeaning or cruel to me. I will go on and on about one of my special interests, but I’ve learned that I should stop.

I’ve learned a lot of things about how much my autistic self isn’t allowed to be in public. And now I’m trying to unlearn a lot of those things.