Why I Don’t Support Autism Speaks, and Why Autism Awareness Month Makes Me Uncomfortable

As most people know, April is Autism Awareness Month and yesterday was World Autism Awareness Day.  Many buildings in cities across the United States and the world “[lit] it up blue” for autism awareness.  As somebody with four cousins who have autism and having my own autism spectrum disorder diagnosis (PDD-NOS), you would expect me to be happy about the amount of attention being paid to autism.  But I’m not.  The attention may be good, but the type of attention is not.

The main group behind the “awareness” is Autism Speaks.  Autism Speaks was founded in 2005 by Bob and Suzanne Wright.  Bob Wright was the former owner of NBC.  The group was founded after the Wrights found out that their grandson was autistic.  Since then, the group has grown to be the largest autism group in the world, receiving millions of dollars in revenue each year.  Their funding is dedicated, for the most part, “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”  (Autism Speaks website).

Sounds harmless enough, right?  They’re funding a lot of scientific research, right?  They’re increasing awareness, right?  They’re advocating for the needs of autistic individuals, right?  Wrong.  Although they say they are advocating for the needs of individuals with autism, they don’t do a lot of listening to autistic individuals.  There is only one person on any of their numerous boards who is actually autistic himself, and none who are on the board of directors.  This flies directly in the face of the ideals of the disability rights movement, whose mantra is “Nothing about us, without us!”, meaning that the conversation on disability needs to include people with the disability not only in meaningful ways, but they need to take a driver’s seat position in the conversation.  One of Autism Speaks’ tag lines is “Are You Listening?”  However, that question should not be asked of the public, it should be asked of Autism Speaks.  Are you listening, Autism Speaks?  Do you consider the words and ideas of autistic individuals to be valid?  Do you make policy based on what individuals with autism wish to see happen?  Are your research goals in sync with the wants and needs of autistic individuals?  At this point, the answer to all of these questions is no.

A large percentage of Autism Speaks money goes towards research.  The vast majority of that money goes towards the etiology of the condition.  While I don’t deny that etiology studies are important, they should not have the monopoly on Autism Speaks’ research budget.  Many autistic individuals have been calling for increased research into quality of life issues and education.  There are many individuals who are being denied full quality of life because they are denied the supports and services they need in order to do so.  An increase in research in these fields will allow for more autistic individuals to lead they lives they want to lead and to contribute to society in positive ways.

Many autistic individuals also find the idea of a cure to be offensive.  To many of them, it is like being told the way they are naturally is wrong and they have to change who they are in order to be accepted.  Many autistic individuals are proud of their autism.  Many will say that while it may not define them, it is an integral part of who they are, and to deny that is to deny them.  That is why many individuals with autism are weary of Autism Speaks research goals of prevention and cure.  These goals support fear and stigmatization of autistic individuals.

Autism Speaks’ fear and stigmatization does not stop at their research goals.  It reaches over into their PSA’s.  In their documentary “Autism Every Day”, they show numerous parents of autistic individuals lamenting about the problems that their children have.  Although I can’t deny that many families who have individuals with autism do struggle and things can get challenging for them, this documentary goes too far.  At one point in the documentary, one woman speaks openly about how she thought about driving off the George Washington Bridge with her autistic child.  She said she stopped herself from doing it because of her neurotypical daughter (http://www.youtube.com/watch?v=O0vCz2KWMM0).  The thing that bothered me the most about this, however, was how this woman said these things while her autistic daughter was in the room.  One of the rudest things you can do, in my mind, is speak about somebody who is near you as if they are not.  That is not ok.  That being done in an “advocacy” video says a lot.  It says that autistic people are not worthy of the respect that neurotypical people are given.  It also says that autistic people aren’t full human beings.  There was not one point in this documentary where an individual with autism was spoken to, and that is a problem.

Their PSA, “I Am Autism”, is not any better.  It starts with the dark, ominous music.  Then, the devilish voices comes in,  “I am Autism.”  The PSA continues to speak about how autism ruins marriages, embarrasses parents, and steals a child away from their parents.  The second half of the PSA consists of people speaking back to “Autism.”  Although it is meant to convey a hopeful message, there are places where it falls short.  First, when it is introducing the people speaking back to autism, it does not mention one autistic individual.  Additionally, it presents autism as something that can be separated from a person, when the vast majority of autistic individuals say that it can’t be.  Many groups, such as the Autistic Self-Advocacy Network found this PSA to be extremely offensive.  So far, Autism Speaks has not done a lot to distance themselves from PSAs like these.   These types of videos only hurt autistic individuals and make their lives harder.

There needs to be a large overhaul of the autism world.  Autistic voices need to be heard.  Autistic people need to be put in leadership positions in groups about them.  Research goals should be based on what autistic people want to know.  Therapies should focus on helping a child with autism achieve their full potential and not focus on “normalization.”  Also, autism should not be portrayed as a monster that steals a child’s soul, but rather a part of a person, which causes good and bad.  Finally, autistic people need to be accepted as they are.

This month is not an easy one for many individuals on the spectrum.  It is one where they are often spoken about, but not asked.  It is one which talks about reducing fear and stigma, yet speaks about the hope that, one day, people like them would cease to exist.  For me, it is one where I am reminded of how I was told to act as “normal” as possible, and how I was bullied for not always fitting into prescribed norms.  It is one where I remember telling people about being bullied and was told that I had to work harder at acting “normal.”  It is one which reminds me of my self-imposed closeting, and my desire to be “out” while knowing the possible negative consequences of it.  Most of all, it is one where I know that things have gotten better for me, but have not for so many others.

At least I am doing something about it.  This post alone speaks to that.  I know I have to speak up.  I know that it is my responsibility to make the changes.  I can do it and I will!

This post is the first in many I will write this month.  I plan on writing about neurodiversity, the hostility towards the concept, “passing”, the disability catch-22, as well as other topics.  This post was just the introduction.  Until next time, “If you won’t listen to reason, there’s always…Towanda.”

2 thoughts on “Why I Don’t Support Autism Speaks, and Why Autism Awareness Month Makes Me Uncomfortable

    • Hi, Thanks for pointing this out. If you may not have seen, I posted about this issue in November of 2013 when Robison resigned. I find it unfortunate that his resignation hasn’t had more impact than it has. Thanks again!

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