Monday, November 18, 2013

This is autism

There's a flashblog going on today on blogs across the autism blogosphere in response to the most recent press release from Autism Speaks' co-founder Suzanne Wright, in which she writes,
"These families are not living. They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7. This is autism.  Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  This is autism." - Autism Speaks "A Call For Action," 11/11/13
As you might imagine, this fear-inducing, desperation-drenched approach to "autism awareness" has been received with anger and offense from a large portion of the autism community, who believe that, in fact, they really are living - and quite well, thank you.  
In response, the "This is Autism" flashblog was born - a single day on which bloggers from all areas of the autism blogosphere, autistic and neurotypical alike, would write about what autism is to them.
There is plenty I could say I could say about my life as the parent of a child with autism.  It is hard, exhausting, beautiful, inspiring, challenging, exciting, messy, ugly, rewarding, confusing, and wonderful.  In other words, as Emily Willingham says, it is just plain PARENTING.
But instead of waxing on about my own experience, I decided to call on the resident expert in my household - the one who experiences autism from the inside out - to talk a little about what it really is to him.  Here's what I got:

This is Autism
By Bud
It’s good for your brain.
Autism is good at thinking.
I’m good at thinking about things way back when.
I’m also good at eating sandwiches.
Isn’t it great?
And you know what?
My autism is good at things like:
I’m good at eating bananas.
And I like making PowerPoints, I do.
And I love music.
And I like watching Fetch on PBS Kids.
And you know what?
I’ve got a computer I can play on.
I can read.
And write.
I like watching Teletubbies. It begins with a capital T.
I like dancing.
Autism is, like, your brain.

And there you have it.  Suzanne Wright had it partially correct:  We are breathing - yes. Eating - sandwiches. Sleeping - when we're not dancing. And working - on PowerPoints.

This is our autism.

And our autism is, like, good for your brain.

For some compelling responses to Suzanne Wright's statement - and for an explanation of why we'll be retiring our blue light for the awareness campaign sponsored by Autism Speaks and channeling our donations elsewhere, please read any of the following:

I Resign My Role at Autism Speaks by John Elder Robison

Why Autism Speaks Doesn't Speak For Me by Emily Willingham

ASAN - AAC Statement on Autism Speaks' DC "Policy Summit"

No More - A Letter To Suzanne Wright by Jess Wilson

Wednesday, November 06, 2013

Presume competence

There has been a bit of back-and-forth in the comment section of my last post.  The gist of it goes something like this:

"Hey, look at this great thing Bud did."

"Actually, that might just be a deficit masquerading as a strength."

"Really, I gotta say, I think it's a strength."

"Perhaps.  On the other hand, it could just be a well-developed deficit."

I'm not going to volley back, because ultimately, any response I have will sound at best like I'm being defensive and at worst like I'm in denial.

But it does make me have to ask:

Why is it that when it comes to autism, so many of us are so quick to view behavior through the lens of deficit and so slow to view it through the lens of strength?

The lens through which we view our children matters.  The way we frame their behavior shapes our response, and the way we respond shapes their behavior.  It's a dynamic cycle.

Presume competence, folks.  Presume competence.