Monday, April 1, 2013

Autism Acceptance Day 2013: Asking the question - How does it make you feel?

Unsurprisingly, our local free parenting magazine is featuring autism this month. I haven’t read the articles, but the cover art consists of paper-doll style people holding hands. They are all different colors, and cut out of the head of each one is a hole the shape of a jigsaw puzzle piece.

I’ll say that again.

There is a jigsaw puzzle piece shaped hole cut out of the head of each person.

My visual processing skills are notoriously shaky, but these holes are not subtle. They take up most of the size of the paper-doll people’s heads.
Some of our staff members were leafing through a spare copy, so I posed the question, “How do you think it makes people with autism feel to see themselves represented by a puzzle piece cut out of their heads?”
No one else saw it at first. Someone suggested the puzzle pieces were their faces. They didn’t have eyes, noses or mouths, but apparently they were the faces.

“I don’t know as I’d want to be represented by having my face replaced with a puzzle piece either,” I pointed out and dropped the subject.
But after a bit, someone noticed you could see the background, or the colored bodies of the adjacent people, through the holes, and realized they really were holes. But still, no one had an answer.

The problem with autism awareness isn’t simply about whether there are holes cut out of people’s heads, or if people are represented by puzzle pieces or by missing puzzle pieces. It isn’t just about Autism Speaks, either. It isn’t merely about the professional rhetoric and it isn’t about the parents and it isn’t about the media, even. It’s about the question no one asks and no one stops to listen to the answer.

How does it make people with autism/autistic people feel?

When it comes to talking about autism, there’s this huge lack of perspective-taking. Which is particularly ironic when describing a group of people who distinguish themselves by their superior ability to take perspectives.

How does being represented by a puzzle, a puzzle piece, or a person with a puzzle shaped hole cut out of their head make autistic people feel?
How does being described as “sufferers” of an “epidemic” make autistic people feel?
How does being told that chemicals in a bottle of water, or potentially curable genes caused their neurology make autistic people feel?
How do therapies aimed at appearing less autistic make autistic people feel?
How do routines and rituals make autistic people feel?
How do flapping and rocking make autistic people feel?
How does forced eye contact make autistic people feel?

How does continued emphasis on how autism makes neurotypical people feel make autistic people feel?

Ask a dozen autistics and you might get a dozen answers. More than one, anyway, because different autistics have different opinions about language, about cure, about representation, about their own neurologies. That’s OK. Autistic people are individual people, after all. Members of any given group do not always feel the same way about the group as a whole or about traits related to their group. So it may be that the question leads to conflicting answers.

Sometimes others don’t know how a particular autistic person thinks or feels. The person might be a very young child and so others have to use behavior cues and take a best guess. Some older autistic people don’t have reliable communication methods either, so others have to continue to use cues and guesses while hopefully trying to establish more reliable communication. Sometimes neurotypical people who know the autistic person well have a pretty reliable idea, and sometimes another autistic person may be able to offer extra insight, but not always.

But none of these are excuses for not asking the question.

And there is even less excuse for not listening to the answers that have already been given.

There are answers on the internet, in books, in articles, in comments to articles.
There are answers in the words of the people who are not interviewed for news stories about themselves or people like themselves.

Many people with a variety of disabilities have spoken out for years about the harm of language such as “suffers” when used for awareness and by the media to describe disabled lives.

Many autistics have spoken and written at length about how they feel about forced eye contact and therapies to imitate neurotypicality rather than those designed to increase function.

I don’t like the idea of being represented by a hole cut out of my head, puzzle shaped or otherwise. I don’t know of anyone, autistic or neurotypical who would, although that doesn’t mean that there couldn’t be some people who like it. There are also likely some people who wouldn’t care.

Autism awareness is knowing that autistics are out there to talk about. Autism acceptance is recognizing that autistic people have their own perspective about what is said about them and that autistic perspectives matter.

Perhaps the first step is that of perspective-taking. How would it make me feel?

And then start asking the question and listening to the answer:

How does it make you feel?

Reprinted with kind permission. The original is here. Autism Acceptance Day 2013: Asking the question - How does it make you feel?