In Part 1 of this series, I talked about being annoyed that my dad praised me for "overcoming" autism, that it felt like a backhand compliment. In Part 4, I discussed having to spend many years working rigorously to rein in things like meltdowns and inappropriate jokes. In the eyes of my dad-- and likely many others-- this is something I should be proud of, and I'm not sure how to respond to that.
Don't get me wrong-- I'm glad that these days I get along better with people and that my meltdowns are few and far between. But, as I've said, to reach this point I had to work rigorously (and in the case of the meltdowns, also take heavy doses of SSRIs). So many times when I failed to do what was expected of me, people often responded with extreme and judgmental reactions. The message I got in the aftermath was always the same: that I should accept even the most extreme reactions as reasonable and that I didn't try hard enough. Often, my parents would reprimand me for being "immature" and "inappropriate", saying, "You have to learn how to behave appropriately." On more than one occasion, Dad said, "This reflects on us as parents."
Well, shit. After a while, of course your behavior is going to change, at least somewhat. And why not? I think one can browbeat a kid into doing just about anything*. It makes me think of left-handed people who eventually learned to write with their right hand, not because they did so on their own, but because superstitious teachers and parents forced them to.
And that's the problem. Just as left-handedness was once seen as "abnormal" at best and "Satanic" at worst, up until very, very recently, attitudes and behaviors of autistic people like me were seen as superficial attributes. Sometimes, they were read as symptoms of "bad parenting". Rarely did people speculate that these were signs of a brain that was hardwired differently.
Right now, I can hear people asking, "Oh, well if you're interacting better with people today, isn't it worth it?" No. The end doesn't justify the means. Although I don't have PTSD, my therapist says I have a couple of signs of it. One of these signs is the occasional nightmare. Often, this is in the form of a vivid dream in which I am a teenager and in a screaming fight with my parents. The are two versions of this dream: 1) That I am fighting with my mother who is telling me I don't act and dress feminine enough and 2) We are at a gathering somewhere, and my parents are reprimanding me about something unforgivably inappropriate that I did. I am screaming and crying desperately, trying to explain things to them and they won't listen. Both dreams are so intense that sometimes I even wake up screaming.
Another horrible dream I have involves close friends excluding me-- sometimes deliberately and sometimes because they don't seem to notice me. The latter scenario-- the feeling of invisibility, that nobody would notice if I dropped off the face of the Earth-- is something that followed me throughout my childhood, teenage years, and occasionally in adulthood. I actually had this dream a couple nights ago. In the dream, I was celebrating my birthday with a bunch of people at some weird indoor water park/escape room. In one of the challenges, we had to pair up. There was an odd number of people, and I was the only one who did not have a partner. Nobody even seemed to notice that I was left out. I said something like, "Great, now I can't even have a birthday without something like this happening to me." Angry that nobody even thought of me at my own party, I turned to my guests and shouted, "Fuck all of you and the horse you rode in on!"** before storming out of the building.
So the short answer is, no, it's not worth it. It would've been better if I'd been met with more understanding and patience growing up, as I would if I were a 21st century kid instead of a 1980s and 1990s kid. I would've received guidance but not been under constant pressure to "change". Neurotypicals and autistic people communicate very differently, and they need to meet each other halfway. The onus can't be entirely on the autistic person. It causes anxiety, stress and, for many people, PTSD (or in my case, symptoms of it). For neurotypicals to do their part, they should be expected to make some accommodations, just as able-bodied business owners should be expected to provide wheelchair ramps for wheelchair users.***
What does accommodation look like? Stay tuned.
*Then again, it depends on the disability, the extent of which is just an accident of nature, isn't it?
**I realize that this phrase makes no sense in the context of my dream. But dreams often aren't logical.
***Truthfully, not enough businesses have this accommodation. At least, though, government-funded spaces such as schools and libraries in the United States are legally required to provide this.
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