I don’t enjoy writing about Autism Speaks. There hasn’t been anything coming from the organization, since it was founded over 10 years ago, that makes me feel good.
I write as a way to inform, as a way to debunk the false claims Autism Speaks spreads, as a protest.
There was a time when I tried to talk to them. I tried to reach out. I was ignored then, as I continue to be ignored now.
I do write quite a lot about Autism Speaks and here I am, once again, writing about them. The organization has been through some leadership changes that some see as “great news” but my feelings are very different.
One of these changes was the announcement of two Autistic adults joining the Board of Directors. They are the first Actually Autistics sitting at the table, in the ten years of existence of an organization that claims to advocate for us.
Despite the claims of “good news” from some people involved in Disability Rights and Autism Rights, I will cautiously say that this is a first step in the direction of possibly good news.
Note: it is my opinion that two Autistics in a Board of Directors of approximately 30 members is far from actual representation. Any organization claiming to advocate “for Autistics” needs at least 51% of Autistic people in a Board of Directors.
The reason why the announcement does not make me cheer is that, so far, it is only an announcement. I, like most in the Autistic community, have been burnt out by Autism Speaks dismissiveness, deliberate lies and hostility directed at us.
Clearly, any organization going through changes would need some time to reset its goals. It is not even clear that Autism Speaks is trying to change their long stated goals. It is not realistic, or fair, to put the burden of a hope for changes in the two Autistic board members either.
But it’s been a few weeks since the announcement and I was expecting more. I was expecting a public welcome statement from the Board of Directors to the new members and to all Autistics by extension.
“Expecting” might seem too optimistic. It was more like a weak hope for some small acknowledgement that Autism Speaks finally recognizes that our voices matter.
I still think the decision was a marketing move, tokenism, an attempt to silence the loudest critics.
I am not saying that the two Autistics, now in the Board, are going to sit silently and allow themselves to be tokenized. I don’t know them but wish them the strength needed to – I hope – try to move Autism Speaks away from the hurtful rhetoric they’ve engaged in so far, and towards acceptance of all Autistics.
I still think Autism Speaks would have to do a few things IMMEDIATELY, if I am to even give a second thought as to their willingness to really listen to Autistic people:
First, an official and public pledge to never again refer to Autistics as burdens, tragedies, lepers, destroyers of marriages, the cause of the country’s financial troubles, or any similar rhetoric.
Second, a promise to stop mentioning Cure and Prevention of Autism. It is extremely dehumanizing and disrespectful of all Autistics, including the two sitting at the same table with the non-autistic majority.
Third, stop the fear mongering. Parents do need support, but not at the expense of children’s dehumanization. We are not monsters.
Fourth, stop the mention of epidemic, or the CDC numbers. Our neurology is not a disease, it is part of a diverse world and diversity is cause for celebration.
Stop dividing us into categories and grades. Functioning labels is a silencing tool created by people who would prefer that we didn’t exist.
All these steps are easy to put in place. They are all about how Autism Speaks talks about us. Much more needs to be done – so much more – before I can even consider giving them the benefit of the doubt concerning their good intentions towards the Autistic community.
I haven’t seen these steps. Until I see them, this post is my latest protest.
About the Author, Amy Sequenzia