By Nicole Eccles
I suppose I need to start this article off with an explanation, perhaps a disclaimer. This article is in no way meant to devalue or demean anyone on this campus or the work they have done with the local community in relation to autism.
This article is not meant to hurt, it is meant to educate and critique an organization that is very prevalent on this campus and many others across the United States.
An organization, which in my opinion and of many others, is not actually listening to people with autism and does them real harm.
I must also make the disclaimer that I am not an expert in this area and I will mainly use first person language in this article while recognizing that there are many people with autism that prefer identity-first language.
This organization is Autism Speaks. If you’ve ever Googled this organization you will notice that other than links to the organization itself and its social media accounts the rest of the links are articles and blog posts condemning the organization.
If this doesn’t raise red flags for you when considering supporting an organization, then I really don’t know what would.
Autism Speaks’ website claims it to be the “world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.” And this brings me to the first very real issue with this organization.
Autism Speaks produced a short video called “I am Autism” a few years ago, here’s a direct quote: “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”
Autism is not a disease. It is a disorder. People with autism are not something to be fixed or cured, they do not have cancer they are simply not neurotypical.
Trying to find a “cure” for autism is an abelist idea, not supported by the majority of people actually in the autism community. What is dangerous about the view of Autism Speaks is that by focusing on ending autism, they are outwardly claiming to want to end people with autism.
How would you feel if there were people going around saying that they want to end people like you? You certainly wouldn’t feel accepted or like any part of you was normal or right.
If this sort of language was being used in relation to people with ADHD or downs syndrome there would be huge outrage, yet in relation to autism you instead have groups of people jumping on the bandwagon with blue shirts and puzzle pieces.
The topic of abelism brings me to the next point of the problematic nature of Autism Speaks. There is sort of a saying that goes around communities that deal with disability: Nothing about us without us.
The idea is that people with the disability should always be included in any discussions and decisions that are made about them.
One of the highest critiques of Autism Speaks is the fact that not a single person with autism sits on their board. The decisions and advocacy that is supported by Autism Speaks is completely focused on the people who have to “deal” with people with the disorder.
At the end of last year Aljazeera America interviewed Amy Sequenzia, a non-verbal autistic, who said that she might be “considered the “poster child” for Autism Speaks’ idea that life with autism is tragic, but that she’s doing just fine.”
She made the statement that Autism Speaks must stop the push for “fixing” therapies and ensure that “autistics [are] part of every conversation about what affects our lives.”
The last part of Autism Speaks that I want to address is the problematic way they portray people with autism.
They are mainly portrayed as burdens, as people living the hardest imaginable life, one that no one should be subjected to.
This is one the reasons that anti-vaxxers are so concerned about autism, because organizations like Autism Speaks have perpetuated the idea that having autism is absolutly terrible. People have used these ideas to jump to the conclusion that it would be better for children to get sick with deadly diseases than risk autism.
I would like to end this article by reiterating that this is not meant to undermine any good work that local organizations have done. Part of loving anything, a person or a cause, is understanding its flaws and being able to critique it and make it better.
Autism Speaks isn’t unsavable, but the current way it is operating is oppressive and hurtful to those with autism. Blind support of this organization cannot continue.
This campus can take steps to change the way we support Autism Speaks and the way we support the autism community. If you want more information on this subject or want some better organizations to support in relation to autism, please check out the Autistic Self Advocacy Network.