When I was first diagnosed with autism and started talking about it publicly, a good friend of mine who had been struggling with his own diagnosis of schizophrenia sent me a private message, asking why in the world I wouldn’t want a cure. If there were a cure for schizophrenia, he would want it immediately. There was nothing he wanted more in his life than to go back to “before” he had schizophrenia. He remembered that time period clearly. That was who he “really” was, not this person who had hallucinations and paranoid delusions and who picked at his own scalp until he bled.
I gently pointed out to him that although I had just been diagnosed (at age 46, late as many women are now being diagnosed late), I had always been autistic. There was no me from “before.” There was only me now. And much of the difficulty of being autistic comes from the pressure to conform to rules and norms that make no sense and are actually harmful.
Other difficulties came from the not so kindly delivered information all through my childhood, from well-meaning teachers and not so well-meaning peers, that how I was naturally was not acceptable and that I had to change to be more like them. I tried desperately to do just that, especially during junior high and high school, when I became savvy enough to see that walking around the playground, holding up a book of Shakespeare so I didn’t have to make eye contact with anyone, was not acceptable. I started identifying the appropriate brands of clothing I needed to wear, the hairstyles that worked, and conveying this information to my mother with a plea that she allow me to buy just one pair of Levi’s 501 Jeans.
By the time I was in my 20’s, I was highly accomplished. But other people considered me brusque, odd, or socially awkward. Indeed, I didn’t have normal social interactions. I didn’t like them. I hated meaningless small talk. I struggled with too much bright light, loud sounds, and in particular, the incessant playing of music everywhere on earth (except my home).
In my 30s, I began to do what others might consider insane amounts of exercise and became an endurance athlete, and part of the reason that I loved training and racing was because it gave me time alone to myself. I didn’t have to make those facial expressions that seemed to be expected of me, or try to figure out what…