(Inside: 4 reasons to not support autism speaks are a must read for all autism mamas! They’re the most popular autism organization, but they’re so harmful.)
When we found out that A-Man is autistic, I went into research mode, like I do with everything.
Eventually, that research lead me to realize I’m autistic myself. But before that happened…
Naturally, that research brought up the organization Autism Speaks. It’s one of the largest autism organization in the country.
I really really wanted to get on board with this organization and become that mom of a child with autism with the blue puzzle piece on my car and educating people.
As we are getting close to Autism Awareness Day and I’ve seen more and more posts about it, I felt that I needed to share my thoughts on the popular autism organization.
As a mother of an autistic child, and as an autistic person myself, I do not and cannot support Autism Speaks, and I don’t think that you should either.
I realize that many people have only heard of Autism Speaks.
Well-meaning folks do marathons and fundraisers for the popular organization not knowing the sad truth.
People “Light it up blue” on April 2nd for Autism Awareness Day, and they have no idea about what this organization is truly for.
4 Simple Reasons I Don’t Support Autism Speaks
Autism Speaks Doesn’t Help Autistic People
Only 4% of their huge budget goes towards actually helping individuals with autism and their families with their family grants.
Autism Speaks is arguably the largest autism organization in the country, and yet they really aren’t focusing at all on helping families who actually experience autism.
For a comparison, 22% of their budget is spent on fundraising efforts.
I simply can’t support an organization that pays their CEO such an obnoxious amount while they ignore the real needs of the families the organization claims to support.
Autism Speaks is Searching to “End Autism”
Autism Speaks has the ultimate goal of ending autism, by any means necessary.
The majority of their funding goes towards autism “research”.
Not research for improving therapies and equipment that helps individuals with autism, but research for a “cure” for autism.
They are also trying to find a prenatal test for autism, similar to the one that they have for Down Syndrome so that mothers will no longer have autistic babies.
As a mother of a child with autism, I wouldn’t change a hair on his head. His autism does not define him, but it definitely plays a role in who he is. I would never take that away, and I would never, ever, wish that he hadn’t been born because of his autism.
And frankly, as an autistic person, I can’t believe an organization that claims to represent me honestly wishes I were never born.
There is Not One Member of Their Board With Autism
Autism Speaks is one of few disability charities that refuses to include individuals with disabilities on their board or in leadership positions.
They are trying to make decisions regarding the future of autism without consulting any individuals with autism.
In fact, after being criticized so heavily for this, Autism Speaks added John Elder Robinson, an author and autism advocate who has autism, to the board.
He later resigned because the organization had no respect for individuals with autism and he could no longer align himself with their beliefs. You can read more about that here.
For those who say that it’s simply that there aren’t autistic people interested and qualified, the Autistic Self Advocacy Network’s board includes several autistic self-advocates.
*Update: Autism Speaks has responded to this criticism and has added autistic members to their board. While it’s a teeny, tiny, baby step in the right direction, it doesn’t rectify the damage this organization is done.
Autism Speaks Uses Disgusting Marketing Techniques
Autism Speaks says that they are all for spreading “awareness” of autism, but in reality, they are spreading only fear.
Over the years they have produced some really terrible videos to market their organization that portray children with autism as something to fear.
One of their videos is a commercial called “I Am Autism” which you can find on youtube here.
It shows like a horror movie including lines like “I know where you live” and “If you’re happily married, I will make sure that your marriage fails” and “You are scared, and you should be”.
They also made a movie called “Autism Every Day” where mothers talk about how difficult their lives are because of their children with autism with their children in the room.
Including a mother who says that she contemplated driving off a bridge with her child with autism, but only didn’t because she also had a neurotypical child.
Seriously. She says it. You can watch here.
Overall, I just cannot in good conscience support autism speaks as the mother of an autistic child or as an autistic person myself.
I know that these aren’t common knowledge facts, but as you know more, you can do more.
Please do not support this organization. If you are looking for autism organizations to support, please check out the Autistic Self-Advocacy Network.
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