Autism Speaks disabled reviews, so I will post my review here too!!
"They spread lies about Autism, calls us broke, burdens, that we are better off dead. Autism Speaks does not speak for me, I have my own voice. Anyone who says I'm over reacting, answer me this, are YOU autistic? No? Then you have no idea of the struggle we have just to be accepted for who we are, autism is not a disease to be cured!!!
John Elder Robison, who was the lone board member with autism, resigned from Autism Speaks. Well-known for his books on autism, including Look Me in the Eye, Robison wrote on his website at the time:
“There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.”
there is an inherent problem with its leadership that is patronizing to individuals, especially adults with autism. “Autism Speaks was founded by grandparents and it is dominated by parents. There are plenty of autistic adults it purports to speak on behalf of. It should be governed by autistic people,”
Still, for some self-advocates, the lack of people with autism in board-level positions underscores problems with Autism Speaks’ approach to the disorder. Robison said he believes Autism Speaks not only treats autism as a “condition of children and infants,” but also promotes an image of people with it as a “diseased group that needs to be eliminated.”
Sharon daVanport, president of the Autism Women’s Network, worries Autism Speaks is “actively work[ing] toward erasing the activism of autistic people as well as disability rights,” she tells The Daily Beast. “When parents of newly diagnosed children Google autism, they often go to Autism Speaks website first. There, they are met with rhetoric highlighting messages of tragedy and hopelessness, instead of diversity consciousness, hope, and support to empower their newly diagnosed child.”
“We don’t want to be talked about as an epidemic or crisis to be combatted,” says Ari Ne’eman, president of the Autistics Self-Advocacy Network. “They view the goal of autism advocacy as a world in which autistic people do not exist. We think we should create a world where autistic people are included and can have a good quality of life.”
He resents Autism Speaks for what he sees as trying to “cure” or rid the world of autism, rather than create better opportunities for people on the spectrum. “If you want to get rid of an inherited condition, it’s getting rid of a population of people. When people say they want a cure, it’s offensive.”
Autistic people are not missing. We have always been here, and we always will. Yet I and many other autistics live with the knowledge that we occupy a world where autism is widely perceived as a disease or defect. I can’t speak for other autistics, but I don’t much care to be seen as diseased or defective. Nor do I like being seen as “missing pieces,” which the name mssng implied.
To say that is not to deny the very real ways autism disables us. Rather, it’s a simple statement of fact. Autism is a neurological difference, not a sickness. As such, it’s here for a reason. Who are we, to second-guess that? Remediate its disability – sure! Wipe it from the world – that’s crazy talk, and societal suicide!
I’ll bet every autistic kid in America knows how it feels to be told we were missing some of our marbles growing up, and reminding us of that in the context of a research initiative is at best insensitive and at worst seriously offensive.
It’s not a name I’d have chosen. I don’t know who did choose it but I’d bet they were not autistic.
An organization run by autistic people would not have made this mistake. An organization run by non-autistics, autism parents, and autism grandparents DID make this mistake. Or perhaps to them, it’s not a mistake. It’s just “Some autism parents speaking.” But that is not what their organization’s name implies.
If “Autism truly Speaks” it by definition does so through autistics. That’s the only way it could speak.
“Autism Observed” is what parents and non-autistics do, and the observers get it wrong a troubling percentage of the time, in the opinion of many who live autism in the first person.
Those are very different things, and we should get our terminology right.
We want societal change and acceptance. We want sensory friendly workplaces. We want jobs shaped to our different abilities. We want help navigating the education and employment mazes. We want to be productive members of society. Those too are things we want and need right now. They too are attainable given the resolve, budget, and legislation to back it up.
If I were running an autistic-centered autism advocacy organization, I’d be making those things my #1 and #2 priorities. I wouldn’t be talking genetics until I’d made some really solid progress on my main objectives. Once I showed the community what I was doing for them today, I’d talk a little about the long term game.
And most of all, I’d be looking around me, at autistic people leading the organization.
You know, if you look up organizations for every other cause out there you will see that over 50% of the money actually goes to those people affected by what the organization claims to support, why not for Autism Speaks?"
A message sent to them!
No one can teach me how to love again 'cause you left a permanent stain on my heart and I've been feeling it 
