Tuesday, November 12, 2013

Autism Speaks isn't Speaking for Us

Suzanne Wright, the co-founder of Autism Speaks, released a letter yesterday as a "call to action" for the nation. For the government to set both educational and insurance standards for autism. I actually take very little issue with this.

What I do take issue with, however, are the allegations Mrs. Wright made in her letter as to how autistic families live, eat, and breathe. That wasn't my autism, all the time.

This is Morgan, my nine year old autistic son. He is in an inclusion class in the third grade and, thanks to determination on his and several other people's parts, is doing very well. He stims, he scripts, but he is happy. He struggles, he doesn't understand quite a bit of things, and, yes, we deal with SIBs, but overall- he is happy. 

He is also toilet trained, able to dress himself independently, and knows how to make toast.

This is our autism. 

"Those families are not living."

My family lives- fully, thank you very much. We choose to go on trips, adventures, teach our children, and live life as fully as possible. Don't slap a functioning label on Morgan because we aren't able to do this. His label has changed since autism first became apparent. And functioning labels are, frankly, irrelevant to how a family might be able to live.

You choose how you see your life. Attitude is everything. So is your support network and and I understand those might be hard to come by, that's why social media has become so important to so many.

"These families are existing."

Aren't all families? Lady, we are living in a godawful economy. In this family, we are worried about medical bills which aren't even my son's. We are stretched thin. But we make it work because we have each other.

Morgan is my autism. Our autism. He has changed so much since his diagnosis. He has changed so much since that word was first uttered at the age of three to us, when he was nonverbal.

Our autism is a gentle giant of nine year kid who is finally playing wall ball at school. Who is now one of the most popular kids in the third grade because he's that sweet at school. Yes, we have aggression issues at home. However, I can't focus on those because that will tear me apart and it's not representative of my son's being.

I try very hard on this blog to be respectful of my son and family. I try to be respectful to autistics in general. What was in that "call to action" was not respectful in any shape, form, or fashion.

Yes, things need to change. Yes, there needs to be a call to action. I fully agree with that.

 First things first- Autism Speaks needs to learn that Autistics can speak- loudly, even if they must use devices. My son is one of them. And Autistics hear. My son is one of those, too. Perhaps that isn't the autism that Autism Speaks wants people to believe in, but this is the autism I will continue to write about. This is my autism.

Autism isn't a death sentence. Get that through your heads, Autism Speaks. You aren't speaking for anyone except for those who want to buy into fear mongering.


  1. HE IS HAPPY. Yes! That is exactly why I named my blog "Dmitry Laughs", because autism is many things: weird, inscrutable, sometimes frustrating, occasionally expensive. But it is NOT misery.

    And I am so sick of THE DIAGNOSIS being a "death sentence" as you say. Part of the reason I think that so many parents have reacted with sickness and fear is because of the fearmongering AS has been peddling for years, what with comparing it to diabetes, childhood AIDS, SUICIDE for crissakes, even saying YOUR MARRIAGE WON'T SURVIVE.

    Getting real old, round here.

  2. in all the commotion I missed this today. Well said! Autism Speaks no longer speaks for this family either!

  3. Well said! Autism Speaks doesn't speak for me, either.

  4. I'm linking this! I have as many links as I can find on this topic here, along with my commentary: http://paulacdurbinwestbyautisticblog.blogspot.com/2013/11/autism-speaks-kidnaps-policy-summit.html