Autism Speaks is a notable Autism focused group. They raise money for awareness. That's about all that most people know. You go to the store and buy a blue puzzle piece to support autism awareness.
But what is this awareness they support? I mean most people know autism exists. How many people know what autism really is? Do they educate about how autistic people think? Do they have autistic leadership? Do they teach the best ways to interact with autistic people?
Actually they don't. If you spend any time in communities of autistic people you are inevitably going to learn the problems with Autism Speaks. But what if you aren't a member of these communities? What is it about Autism Speaks that seems to be so controversial?
First of all is the issue with how they spend the money they make.
Only 4% of the funds go to family services (providing iPads, weighted blankets, scholarships, etc)
10 times that amount is spent on "research" which is widely eugenics type research which aims to prevent, "cure", and even push for prenatal testing for autism (which is not yet possible).
http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf
The second problem with Autism Speaks is that they have no autistic leadership. They misleadingly name themselves "Autism Speaks", without giving a voice to those of us who are actually autistic. This issue can further be seen by their polls, questions, and involvement always asking if you are a family member, friend, or unrelated to autism, but never if you are autistic yourself. The worst example was when a 14 year old autistic teen created a parody site called "ntspeaks.net" (nt means neurotypical, it often simply means non autistic though more accurately it means your brain functions normally without autism, adhd, dyslexia, or other things which wire your brain differently). When this teen made her parody site Bob Wright , co-founder of the organization Autism Speaks, threatened to sue the teen, who was scared into giving up the domain.
They use their popularity, financial backing, and corporatist views to scare, bully, and threaten those that are smaller, weaker, and less aware of the complexities of the law. (The protections, the system, what they can and cannot do etc). They censor and bully actual autistic people rather than listen to our concerns and adjust their organization accordingly.
http://www.mindlessmommy.com/2008/01/autism-speaks-sues-a-teenager-with-aspergers-syndrome/
The third main problem with Autism Speaks, and perhaps their worst offense, is the fear campaign. Rather than raise awareness by sharing actual facts about autism, giving information on how to better communicate between autistic and neurotypical people, what certain actions can indicate is happening inside the autistic person's head, etc, they have instead fear campaigns. They produce propaganda to portray autistic people as only children, and nothing but a problem. In their worst ad they maintained that autism would make sure your marriage failed, you cannot attend church or temple, you cannot comfortably go in public, you won't be able to sleep. Then they went on to say that autism was something to defeat and battle, and put an end to.
https://www.youtube.com/watch?v=8mycxSJ3-_Q
Most often however their PSA's only have to do with 1 in 88, now 1 in 68, being autistic, though they don't do so in an unbiased and non fear inducing way, instead they compare the odds of being autistic with the odds of being in a car accident or other negative events.
That's three strikes Autism Speaks.
These reasons, and many more are why no self respecting autistic person supports this organization.
This is why there are movements like "BoycottAutismSpeaks" in which we refuse to spend our money, when possible, with organizations that support Autism Speaks.
This is why we speak out against them.
This is why we will not "light it up blue".
Autism Speaks does not speak for me.
Nothing about us, without us.
Please help join the movement to take down Autism Speaks, since it is unlikely they are going to change. (One high ranking member even sympathized with parents that murder autistic children, these aren't well meaning but miseducated people, these are people with hatred in their hearts that run a hate group disguised as support.)
I'm hoping we will have a movement strong enough to bring down this organization and raise real acceptance and pride of the autistic community.
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