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Autism, allyship and Autism Speaks

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How would you feel if you were told on a national platform, by the co-founder of a supposed advocacy group working on your behalf, that you were lost? That you, and three million other people like you, were stolen from your family, your friends, and your community?

According to Suzanne Wright, co-founder of Autism Speaks – the most prominent and well-known autism advocacy group in America – I am lost. I am not living. My family is not living, either. They just exist, trying to deal with the burden that I am. Trying to deal with my difficulties with non-literal language. Trying to deal with my difficulties with abrupt change, unfamiliarity and the unplanned. Trying to deal with my constant fidgets and my sensory differences.

Last November, before the Autism Speaks’ first ever National Policy and Action Summit in D.C, Suzanne published an essay on Autism Speaks’ website about the “autism crisis.”

“If three million children in America one day went missing – what would we as a country do? […] We would call out the [military…] Yet we’ve for the most part lost touch with three million American children [with autism], and as a nation we’ve done nothing.”

In case it wasn’t clear, I greatly dislike and disagree with Autism Speaks – in part because their fundraising budget is more than five times their family service grant budget (4 percent vs. 22 percent), and in part because their views towards Autistics are infantilizing: it’s not three million Autistic kids; it’s three million Autistic people. I dislike and disagree with them in part because they have no (open) Autistic representation on any senior or advisory board. The one Autistic person that they hired for an advisory board resigned last November, citing that he joined in 2010 in the hopes the he could reform the organization, but that with the publication of Suzanne’s piece, he realized that Autism Speaks has not changed – and will not change.

And that gets to one of my biggest problems with Autism Speaks. They don’t listen, and they don’t change. And they sure don’t speak for Autistics. After years of outcry from Autistics demanding respect, change and that more than 2 percent of their research budget be spent on understanding the needs of and services for Autistics, they are still the same organization that views me as diseased, disordered and a burden to society.

Recently at Stanford, a new student group has been formed, Autism Speaks U, the university-level organization of Autism Speaks. Across the country, the chapters of this organization sponsor Walk for Autism, Light it Up Blue and other campaigns that many, if not, most, Autistics do not support. While their intentions are good, the dialogue that these campus organizations creates is centered on awareness of the problems we are seen as, not acceptance of the people non-Autistics far too often forget us to be.

If you want to be or consider yourself an Autistic ally, I urge you not to support Autism Speaks or the Stanford chapter of Autism Speaks U. Rather, look for organizations to support that are run by Autistics and for Autistics, like the Autistic Self Advocacy Network, the Autism Women’s Network, The Thinking Person’s Guide to Autism and the Autism National Committee. The work they do supports Autistics, their families and communities.

There are also many other informal ways you can be an ally to Autistics. First off, educate yourself about who we are, our diversity and our collective goals and desires. Come to see us as a varied community of functional, competent people.

Call us Autistic (identity-first language). I’m not a person with transgenderness. I’m a transwoman. Similarly, I’m not a “person with autism.” I’m an Autistic. (Note: Some folks do prefer to be called person with autism, in which case, you should refer to them as such.)

It’s also important to understand that most Autistics do not want a cure, because most of us don’t believe that autism is a disease or a disorder. Nothing is wrong or broken with us. Our brains just function differently than those of others. We process the world around us differently. Sometimes it is a wonderful gift. Other times, it’s quite disabling. But it is not something that needs fixing or changing. What we need is acceptance and understanding.

Going into more detail about some of our neurological differences, most Autistics experience and sense the world very differently from neurotypicals (non-Autistics). For example, it is dangerously difficult for me to feel cold. Light touch can be very overwhelming for me, and I’m very sensitive to color and light. Most Autistics also have difficulty in large, crowded and loud situations and events. Having sensory-free (or as sensory-free as possible) spaces at parties, events and other large gatherings for Autistics to decompress and regulate themselves can make Autistics feel much safer and more comfortable in social situations.

Another important thing to do is to listen to us, assume our competence and take us seriously. If we ask for an accommodation of some kind, it’s because we need it. Likewise, if we give you feedback or a suggestion on how to make a space more accessible for Autistics, listen and engage seriously.

Keep these simple, easy ways of being an Autistic ally in your mind at all times, especially if you are planning an event or social gathering. Don’t be like Autism Speaks and ignore and denigrate us. Listen to us, respect us and take our needs seriously.

 

Erika Kreeger ’16

Contact Erika Kreeger at ekreeger “at” stanford.edu.

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