What’s Wrong with Autism Speaks?

 

AS twitter screen shot

 

(This post was also published on Diary of a Mom’s blog. )

 

Although I have a wonderful 6-year-old autistic son, I’m not thrilled that Autism Speaks is currently celebrating its 10th anniversary. In fact, I’m more excited that there’s been a tremendous Twitter backlash recently as autistic people and their allies speak out against the organization.

This fight is nothing new, but the more publicity if gets, the more I find people I know wondering: what’s the big deal? What’s wrong with this (so-called) advocacy organization? Don’t they raise money for genetic research, offer guidance for parents, organize fundraisers, “light towns up blue” to raise autism awareness, and seek to bring together all the “pieces” of the autism puzzle (as the ubiquitous puzzle piece emblem represents)?

Yes, they do. But the incidental good that might arise from all this is offset by a few fundamental and disturbing facts:

1) Autism Speaks’ Co-Founder Suzanne Wright uses a rhetoric of hate and fear to try to bring attention to the organization. She’s demonized autism in a “Call to Action” to policy makers in Washington D.C. and compared autistic children to lepers in a recent speech to the Vatican. The organization also makes terrifying videos about life with autism (which Jess Wilson at Diary of a Mom does a fantastic job of taking to task here).

2) There are no autistic people in decision-making positions (Board of Directors or Leadership) at Autism Speaks (which begs the question of who’s actually speaking for those with autism).

3) Less than 5% of the money raised by AS directly helps families and autistic individuals. As the Autism Self-Advocacy Network reports, “most of the research that Autism Speaks funds is devoted to causation and ‘prevention,’ including the prospect of prenatal testing.”

Even with these facts in hand, I’ve still heard people say, “so what?” If Autism Speaks is doing some good, isn’t that good enough?

No.

No, it is not.

Because cultivating a culture of fear about autism and seeking to eradicate future generations of autistic people perpetuates ignorance and encourages fear. Or to paraphrase Jess: demonizing autism dehumanizes our children.

(Really, though, some might say, isn’t that hyperbolic? Does that really happen in real life? Consider this story from a mom I know who has two incredible autistic sons: last night her mother was in a grocery store, chatting with a stranger in the cookie aisle. She mentioned that both her grandsons were autistic, and the man snarled: “all children with autism should be aborted because they add nothing to society.” My friend’s mother was appalled and heartbroken. I’d like to think this is just the ramblings of one hateful man, but tragically—as Suzanne Wright’s speeches show us— he’s not alone in this viewpoint.)

And it’s not good enough because it creates despair and frustration, as young autistic poet and writer Emma Zurcher-Long expresses so poignantly here.

And it’s not good enough because Autism Speaks keeps doing things to fuel the (quite justified) anger of autistic advocates, like Amy Sequenzia (who’s non-verbal but has a lot to say).

So, what should we do now instead of sending money to Autism Speaks? What am I trying to do to be a better advocate for my son and a better mother?

Listen to autistic people. Read their words herehereherehere, and in so many other places.

Take what Emma says on her blog, Emma’s Hope Book and apply it to the lives of the autistic individuals you know:

“Remind me of all I am capable of and focus on what hinders you, but don’t hurt me because I do not experience this world as you do.”

[And please don’t stop there. Please read Emma’s post in its entirety here and follow her blog here.]

Research neurodiversity, and consider how re-envisioning autism in terms of diversity rather than disease can positively affect all our lives.

Change the way you talk about autism. As Aspergian John Elder Robinson writes: “We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.”

And if you want to donate money, then please, please, please don’t dump it into the coffers of Autism Speaks. Send it instead to organizations that support autistic people:

·      Autistic Self-Advocacy Network (ASAN), which provides support, community, and public policy advocacy, by and for people on the autism spectrum.

·      Autism Network International (ANI) which is an autistic-run self-help and advocacy organization. Every year ANI hosts Autreat, the autism conference designed to be accessible and welcoming to autistic people.

·      Autism Society of America which works to increase public awareness about the day-to-day issues faced by people on the spectrum, advocates for appropriate services for individuals across the lifespan, and provides the latest information regarding treatment, education, research and advocacy.

These may seem like small actions, but I’m certain they’ll cause a lot more good for actual autistic people than tweeting our appreciation for Autism Speaks, screwing in a blue light bulb, or slapping a puzzle piece sticker on the back of our cars.

*One more note: By saying “autistic people” not “people with autism,” I’m purposefully using the language for which autistic advocates have fought. (There are some excellent thoughts on this subject here and here).