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


Stimey said...

Rock on, Bud! Jack had similar things to say. :)

Anonymous said...

Our autism loves your autism. <3

hannah said...

Wow! Thanks, Bud. What a beautiful description of a life well *lived*!

Emily Morson said...

Ha! You guys are great.

I also shared your "hairdryer-brained kid in a toaster-brained world" post on the #thisisautism tag, because it's such a great explanation of what autism is. I hope that's OK!

Jessi Cash said...

Bud is pretty awesome. And that is the very definition of a life that is being LIVED.

Kal said...

Thanks, Bud! I love what you have to say and I love your brain. We have had a sudden uptick in Teletubbies viewing ;) and it is good.

Teal said...

This is Budism (not to be confused with Buddhism): life is lived episode to episode, in anticipation of Bud's next success, in fear of leaving behind all those cute moments that fill up childhood and of closing in on adulthood which is starting to creep up (like underpants). Life is well-lived, moment to moment, day to day, smile to smile, hug to hug, and sometimes snack to snack. This is deliciousness, and this is Budism.

Anonymous said...

Maybe for some families there are periods where things are tough and they feel like they are just "existing"... But hopefully they are lucky enough to have friends and family to help them through.

MOM-NOS said...

Anonymous, I agree completely. But I think that the distinction you make is important - some families who have periods when they feel like they're only existing. I take issue with using the same broad strokes to paint a picture of all autism families all the time.

Anonymous said...

I dislike Autism Speaks a lot! Always have, however most of the comments and blog posts I have read around this issue are from parents of very high functioning children or adults with autism. You all really have no clue what living with severe autism is like. It's not blogging fun poems by their kids, trust me. Autism Speaks does NOT speak for parents or the kids on the lower end of the spectrum but neither do many of the bloggers who you have mentioned.

MOM-NOS said...

Anonymous, you may find that the This Is Autism flashblog site represents a much wider spectrum than the few posts I linked to:

I will also say that there is a lot I don't write about here, and I might understand more than it seems.

Anonymous said...

I am new to this world. My son was just diagnosed in September. As you can imagine I have done a lot of reading and researching (blogs and books) to help me help my son. After reading many blogs and such It saddens me to see such a wide divide amongst us.

I can understand why some families would be upset by her comments. I am not. The outside world has this romantizied image of autism. They think that all ASD kids are what they see on TV. They see images of kids functioning without any problems, making last minute winning basketball shots, making speeches in front of hundreds of people. They don't see parents changing the diapers of a middle school child, they don't see a child head-butting or biting their parent because they are so upset. Before all this I had no idea that a lot of ASD children never potty train and most don't either. They need to know!!!! They need to know because we need HELP.

If someone else, who does not have an ASD child of course, mentions Temple to me again I am going to SCREAM!!!!! It is wonderful that she is so productive and it is wonderful that your son can write poems but most of us are not and will never be there unless we get HELP for our children.

MOM-NOS said...

Anonymous, I hear what you're saying, but I think you're making assumptions that the scenarios you mentioned are not part of my world. I have found that in my 14 years of parenting Bud, I have served him better when I've focused my energy on what he can do instead of on what he can't.

Also, just to clarify. That wasn't a poem. That's how Bud talks.

Anonymous said...

Thanks anon 9:51. Well stated.

Here's an FYI Mom NOS, parents of kids who need high level care also focus their energy on what they can do. That's not exclusive to parents who have high functioning children.
They also live in a very different world doing the best they can under stressful conditions. Watching a child struggle to make a sound and smashing their own head out of frustration is difficult (even when they have great intervention and aug. communication) as is watching a severe child on the spectrum have ten seizures per day.
I don't agree with Suzanne Wright but I am very tired of the unrealistic world many with Aspie kids paint.

MOM-NOS said...

Anonymous (I have no idea if these anonymous posts are the same person or not), I sincerely apologize for having offended you. That was certainly not my intent.

I never meant to imply that other parents don't focus on the positive. I was only taking issue with the way the issue was framed in the press release. Believe me when I tell you that I don't think I'm a better parent than anyone else.

Bud doesn't have Aspergers, but I do take your point.

jess said...

missed this amid the hubbub .. so glad i'm seeing it now. love, love, love. xoxo

School Law Center said...

Nothing is more fulfilling than seeing a child with autism learn and thrive. At The School Law Center, we represent families that are in disputes with their school district. Even though we meet these families when they are in crisis, these parents are incredibly loving advocates. We are privileged to work for such incredible families.