Why Autism Speaks is a terrible organization.

Autism Speaks does not speak for me

When someone thinks of autism awareness, they probably think of Autism Speaks. They dominate other autism organizations, and are sometimes the only one people know of. It is heralded by parents, celebrities, people who know autistic people, but never autistic people themselves. Why? Because Autism Speaks doesn't and never will speak for us.

Autism speaks has NEVER had an autistic person on their board. How can they claim to be active in the community when they have no idea what it's like to BE in the community?? Their current board consists of parents, including one who founded SafeMinds, which has contributed to the anti vaccination movement, as well as another board member who used be a board member for Cure Autism Now. Most autistic people do not want to be cured. Autism is NOT a disease. It is a developmental disability that is a very large part of our lives, and without it we wouldn't be nearly the same people. When Autism Speaks claim they want to rid the world of autism, it feels like they want to rid the world of us.

Autism Speaks spends just 3% (3%!!) of the money they raise on helping autistic people and their families. Where is the other money going? Mostly to funding advertisement for themselves, and funding atrocities like the short film "I Am Autism", a promotional video utilizing a disembodied voice to tell the audience what precisely “autism had stolen” from the families of autistic children, even citing divorce as a result of autism, likely relying on a now disproven statistic that 80% of marriages in which there is an autistic child end in divorce. Autism Speaks has never apologized for this, although they have removed it from their youtube channel.

Autism Speaks is responsible for another media piece titled "Autism Everyday". The parents spend most of the time talking about what they cannot do with an autistic child.  They cannot go out for coffee with their friends, they cannot do x, y, and z, because their child is autistic.  The conversation seems to be only focused on what the parents’ lives are like, and there is almost no discussion on how it feels for the autistic child themselves.  The worst part of this video, however, is when Alison Singer, former Autism Speaks board member and founder of the Autism Science Foundation, speaks about her desire to drive her daughter and herself off the George Washington Bridge, and only stopped because she was thinking of how it would affect her non-autistic daughter.  The heartbreaking part of this is that she says all of this in front of her autistic daughter, with no regard as to whether her daughter can hear and understand.

Autism Speaks often refers to autism as a “puzzle”, making use of a human-shaped blue puzzle piece in their logo.  The puzzle piece did not originate with Autism Speaks, but their continued use of it, in addition to phrases like “…will find the missing piece of the puzzle” as stated in their mission statement shows that they don’t really value autistic people as fully human people.  We are puzzles and we are missing pieces of ourselves, and we must become neurotypical in order to be respected by this group.

As stated previously, they have members of their board who are very concerned with environmental factors (such as vaccines) and how they contribute to autism diagnoses.  Autism Speaks was, for quite a long while, very much anti vaccination.  Alison Singer left Autism Speaks in 2009, no longer wanting to be a party to an organization that wanted to spend so much on researching vaccines, a link that has long been disproven.

Autism Speaks has also allied themselves with the Judge Rotenberg Center. If you don’t know what the Judge Rotenberg Center is, it is an institutional that routinely uses electroshock on autistic people as punishment for even minor infractions. The fact that Autism Speaks is offering such an organization a place at one of their resource fairs, as a potential resource for parents of autistic children is quite alarming.

Autism Speaks often utilizes functioning labels when speaking about autistic adults.  They use the numbers of so-called “high functioning” autistic adults to prove that autism is an epidemic, but refuse to listen to anyone they deem as high functioning (essentially, anyone who can use a computer).  They incidentally also ignore people they deem as “low-functioning”, because they refuse to presume competence. You should not be using functioning labels on ANY autistic person (or tell me how “high functioning” you think I am because I am able to type this).

That is as much as I am willing to put together, but there is so so many more harmful things Autism Speaks has done to the autistic community. I hope you will no longer support them.