It’s starting to feel like another day, another article or media piece to be frustrated with. Maybe this is a sign of my increasing awareness, and unwillingness to let things slide. Awhile back I read a piece in The New Yorker called Seeing The Spectrum: A New History of Autism by Steven Shapin.
The art is the first thing I would like to comment upon. I interpreted the picture as a depiction of a whole community of adults in the process of constructing a child. It might be an artistic depiction of the concept that a whole community is required to raise a child. That’s not the first thought that popped into my head.
“Look at all these adults fixing this broken child,” was my first (sarcastic) thought. Maybe that comes from a cynical place.
The article starts out by pointing out how the world is an unpredictable place, and normal people just deal with it.
Sure they do.
Moving on, the author throws in an example of how someone might accidentally buy their boxers at J.C. Penney instead of Kmart. This is a clear reference to the film called Rain Man. He goes on to specifically reference this movie as a cultural tipping point in understanding autism. The movie is based on a real person who was named Kim Peek, who wasn’t autistic, although inspiration was also taken from another man who was.
The article goes on to say the world has always been this way; there have been people who deal with changes and those who impose order, but autism hasn’t always existed. The author means that autism was only identified relatively recently.
When a tree falls in the forest, and nobody’s there to hear it, does it make a sound? If a doctor hasn’t diagnosed you, does that make you less autistic? According to all the people who attack self-identified autistic people in online communities, I’m thinking they believe a person is only autistic if a doctor says they are. What a pile of crap.
My cousin was diagnosed as having an anxiety disorder, Obsessive-Compulsive Disorder, and depression. This is despite ALL of her siblings being autistic. The doctor told her that she cared about other people and what they think of her so she couldn’t be autistic. This was in the last five years! If doctors are making diagnoses based on stereotypes, I’m more than willing to accept that a person might understand themselves better than the doctor. I’m not about to argue their assessment of themselves as autistic. The author warns against posthumously diagnosing famous people in history, and he has a point. I do it all the time, but it’s speculation rather than fact.
The part of this article that has many autistic people upset is as follows:
For parents of autistic kids, awareness is desperately important. It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and order that parents can’t supply, whose eyes are not windows to their souls but black mirrors. Public recognition is vital, both for its own sake and as a means to mobilize resources for care, support, and a possible cure.
OUR SOCIETY NEEDS AUTISTIC PEOPLE! I’ve said it many times, in many blog posts, and I’m not going to stop saying it.
The author goes on to discuss brave parents who refused to institutionalize their children and insisted on treatment options, changing the view of autism. It might be true, but it leaves out autistic people.
He discusses Applied Behavior Analysis as if it’s a thing of the past. I wish it were. I understand the approach doesn’t use cattle prods anymore, so I feel like I need to explain my reluctance to embrace it. This is especially true since Mr. Shapin said that high-functional autistic people like myself are picking on the parents of severely autistic children by saying that we shouldn’t try to treat autism. (italics are his words because I HATE functional labeling) I’ve never said anything like this. I want people to have relief from symptoms that impact their daily living, without destroying autism.
I watch a show on CBS called Scorpion. To my dismay, I’ve watched it become increasingly ableist. I wince whenever Paige delivers lines to Walter like, “You’re becoming more human.” She’s saying he was less than human before that point, and she the one who gets to judge his humanity. This is what autistic people face all the time with behavioural modification approaches.
In one episode of Scorpion, Walter acts out a piece of Romeo and Juliet. Paige asks him why he doesn’t act all the time. What she means is she can’t understand why he doesn’t put on this show every time he has to deal with people. It’s exhausting and shouldn’t be necessary. Why should autistic people expend so much energy trying to accomplish trivial things? Why can’t neurotypical people just accept our stimming, if it isn’t causing us harm? Steven Shapin took the time to explain how great neurotypical people are at adapting. Put those skills to work by adapting to the idea that we aren’t the same as you and we aren’t going to pretend to be, just to make you more comfortable.