Last week, I posted a simple question on Facebook and Twitter. I said:
I'm working on an article and need your help . . . what are the most annoying things NT people say or do about or to folks on the spectrum?
My average Facebook post gets maybe 20, 25 comments. Over the space of four days, this one generated over 600 responses. Clearly, it touched a nerve. There were a lot more annoyed people out there than I imagined!
I decided to sort the replies; to see if there was a pattern. Indeed there was. It turns out there are three kinds of aggravating remarks, all of which point to one conclusion, which I'll reveal in a moment . . .
First, there were those who felt autistics did not deserve any services or special consideration. Some said, “its because you are all retarded.” Others said the opposite; “you don’t need help because you’re too smart already.”
I could understand how someone would get pretty angry, hearing that about themselves, their kid, or their brother or sister.
Then there are what I call the “autism deniers.”
“Autism is just an excuse for bad behavior;”
“This kid is just lazy;”
“Leave him be he will grow out of it.”
If I heard that, I’d be furious too.
Finally, we have the finger pointers. These were people who dismissed autism by blaming someone or something, rather than focusing on the real issues at hand.
“You’re just a bad parent;”
“If that kid lived with me this wouldn’t happen;”
“None of this would have happened if you had skipped that vaccine;”
If the first two didn’t put me over the edge, that one would.
To me, the remarks seemed strikingly rude and offensive. Yet seemingly respectable people uttered the words in earnest. Some of them might have been intended as mean but my sense was, most people said what they said with a straight face, meaning well. Why did they do it? I cannot imagine any answer but ignorance.
Clearly, there is a lot of ignorance out there. Judging from the comments, many recipients (victims) of the ignorance are parents and young people with autism. The other group that seems to take a lot of heat are the autistic young adults.
What can our fellow autistics do about this situation? I’ve been thinking about that a while now, and for the longest time I really didn’t know. The words people wrote to me were the same ones I heard as a kid, almost 50 years ago, and the same ones I heard raising my son Cubby, 15 years ago. It made me mad then, and it makes me mad now, but I never knew how to change what others felt or said.
I don’t hear those sorts of attacks much today. Why? I got older, and there is a certain respectability that comes with age, provided you ar enot aging in State Prison. I don’t have a strange-sounding child with me in the grocery store anymore. I don’t apply for jobs and say and do the wrong things. Age and commercial success have served to insulate and protect me, but that’s no help to the millions who live with this abuse all around me.
So what will help them, today?
I found the answer in an unlikely place – the Brooklyn Academy of Music Playhouse, where I saw the play Laramie Project two nights ago. For those who don’t know, Laramie Project is an acclaimed play (that was also adapted for TV by HBO) about the aftermath of the Matthew Shepard murder, how it changed the town, and indeed, the wider world.
Actors portrayed townspeople, who told their stories, and how they felt, both right after the kidnapping and murder, and ten years later. It was a powerful, moving work, that stretched over almost four hours. People cried. People were speechless. People thought about what they'd seen and heard, and change began. You could see it in the audience, and hear it in the air.
I spoke at some length with Andy Paris, one of the play’s creators. We talked about how the play had changed people, by opening up a dialogue. A play is much more personal than a TV show. With a play, you are right there, looking at the actors, twenty or perhaps fifty feet away. There is a power and immediacy to messages like theirs that makes you think.
Awareness and dialogue can change the ignorance.
That is the one and only fix for the outrageous things people say about autism, and about and to autistic people. Legislation won’t change what people say, or how they feel. Only greater knowledge can do that. Racism, discrimination, and much of the worst behavior humans exhibit is founded in ignorance and its consequences – oppression, violence, and lack of opportunity.
That’s a hard fight – bringing awareness to the world. But it’s got to be done, if we want to end the ignorance, and the hurtful behavior it breeds. I for one want to see it ended tomorrow, if not sooner. I hope you do too.
Thanks to everyone who responded to my Facebook post. Those who want to see the original comments can find them by scrolling down my pages:
Learn more about the Laramie Project at http://www.laramieproject.org
John Elder Robison
Don't forget - my newest book - RAISING CUBBY - is in bookstores and online March 12. Parenting at its very best!