This time I’d like to discuss the ongoing struggles of people with autism. So many people either think they’re like the “Good Doctor" or like the “Rain Man”. They don’t show those of us with more challenging behaviors who are non-verbal on TV, so no one understands that the spectrum is much more diverse than a few savants here or there. To portray the Rain Man or the surgeon, they didn’t even use autistic actors. (Although kudos to Alexander Plank playing one of us and being one of us, on an episode of the Good Doctor to be aired this week.)
I think people might be afraid of us. That's too bad. My fears are that because the non-speaking autistics sometimes have the strangest behaviors, people think we are mentally impaired. That isn’t the case. It’s a disordered sensory system and over-sensitive neurons, as well as being psychic. When you can hear what people think, it is awful sometimes.
When I was little, before the age of four, I was listening when the doctors told my mom I had the cognitive level of a two-month-old. I was listening when I was three, when an O.T. told my mom I had better learn to button my shirt because I’d end up in a group home. When my mom learned to type with me with facilitation, I was four-years-old.
I typed in complete sentences with better spelling of the word broccoli than my mom. Many people of course didn’t believe this, and there was much propaganda, against Facilitated Communication as if we didn’t have a right to supported typing. My mom told other autism moms about it and even typed with their kids but they didn’t believe her. They thought my mom was typing for me. She only lifts my pointed finger up and I land it where I want.
This isn’t freaking rocket science, and why in the world would someone like myself -- so unconcerned all these years for what even my mom thought -- why would I humor her for almost twenty-six years by stabbing at a letter board? Also, why would I get up and bring that letter board over to my facilitator when I had something to say? It’s incredibly insulting not to be believed. It says to me in essence, we don’t think you’re communicating, and we also think your parents are crazy.
Most severely autistic folks don’t get a chance to type because no one has faith in them. No one presumes their competence. It’s time to free our people. Give them a YES/NO choice board at least; then try a letter board.
What people fail to understand is that many of us have movement disorders, kind of like what my mom made up a phrase for: a Tourette's of the body. For instance, I may really want my food, but I throw it on the floor sometimes when I don’t mean to. Then people think how dumb is that?
Another mystery to folks is self-injury. I sometimes panic from sudden movement or sound or just get really pissed off and scream and bite my arm. Not too cool when you’re trying to gain people’s faith in you, but there it is. Cope with it.
Another huge problem is seclusion and deadly restraints being used on our people. One place, the Judge Rotenberg Educational Center in Massachusetts, shocks our people into compliance. We need to rise up, people. Parents, you do, too. It is time.
illustration by Carolyn Reed