Autism Speaks: Why We Need Autistic Representation

Through the week-end blog hop over at Single Mother Ahoy!, I came across a post supporting Autism Speaks and debunking the argumetns people have against it. The first of these is that Autism Speaks has no autistic people on the committee. That doesn’t bother Melissa Hopper, the post author, presumably because she’s a parent. It does, however, bother me. Since every autism blog (and though I don’t really write an autism blog, I sometimes write about autism, so…) should have a post for or against Autism Speaks, here’s mine. It isn’t, by the way, directed just at Autism Speaks, but at every parent-run organization aimed to represent the entire community of people with a particular disability.

Suppose, I wrote to Melissa, that your son were gay. Would you raise money for an organization that had only parents and families of gays on its committee? I realize that there are organizations like PFLAG (Parents and Friends of Lesbians and Gays), and Melissa might in this hypothetical scenairo want to join them. I mean, there’s nothign wrong with parents of children or teens or for that matter adults who are different wanting a place to be represented too.

The thing with Autism Speaks and possibly other organizations is that 1. they pretty explicitly exclude autistics from the committee, and 2. they don’t support the inclusion or equality of autistics, choosing instead to support their eradication.

Now I do realize that autism is a disability whereas homosexuality is not. People may disagree here, but I do see autism as a disability. However, that still doesn’t mean that social inclusion and equality shouldn’t b primary goals of an organization claiming to speak for that disability population, particularly since the majority of adults with this disability advocate this.

Once Melissa’s son grows up, I asked her, does she want to be his representative for the rest of her life, or does she want him to be able to speak for himself? I am hoping for the latter, as most parents want their children to grow up to be able to speak for themselves. Now I can totally see why at age three Melissa’s son can’t speak for himself and he needs his mother to do so. I totally also see that right now the number of autistic children (who need their parents to speak for them) is greater than the number of autistic adults. In twenty years or so, this will not be the case anymore. And while there will still be autistic children, and hence the need for a parent organization, an autistic-run organization should have far more to say. And just for your information: there are already a number of adults who grew up with parents supporting the likes of Cure Autism Now, who are now old enough to speak for themselves and vehemently disagree with the cure position. Christine Motokane, whose book I reviewed on Wednesday, is one of them.

In the Netherlands, there ae two organizations for the schizophrenia community. One, Anoiksis, is run by people with schizophrenia themselves, while the other, Ypsilon, is run by families. I can see why there’s a need for both, but they cooperate on some level. Same for the Dutch Autism Society and Persons on the Autistic Spectrum. (The Autism Society has autistic members, like myself, but I don’t know if they have anyone autistic on the committee.) Autism Speaks has never sought any form of cooperation with autistic-run organizations. It will never do so, because Autism Speaks advocates the eradication of autism rather than the equal rights of autistics.

Now I do know there are autistic people who support Autism Speaks, and John Elder Robison used to be a token a =utistic for them. I don’t even have strong opinions against all of Autism Speaks’ positions – I used to read their blog and it wasn’t too bad. I also wouldn’t mind Autism Speaks existing if a major organization representing autistic people themselves were getting as much support. Like with the Anoiksis/Ypsilon thing, I can see the need for a parent organization. But Autism Speaks aims to speak for autistic people without having a single autistic person on the committee, without cooperating with autistic people, and without advancing the inclusion of autistic people. If just one of these were the problem, oh well, but now that all of them are, I have major concerns.

Melissa’s son is just three. She doesn’t likely think of him representing himself. But he’ll eventually reach that point, and by that time, I can only hope he has his mother’s support rather than opposition.


7 thoughts on “Autism Speaks: Why We Need Autistic Representation

  1. Did you ask me if you could use my name? I don’t think so. I am my sons voice and I am his advocate and I am prepared to do so for the rest of my life. As far as my son being able to represent himself in the future is up in the air. We do not know where he will be or how he will be. Why in the world you would think he would have my opposition. Don’t you think you should ask me more questions and allow me to answer before you posted this. I live and breathe for my son.


    1. I apologize for having come across as attacking you personally and for using your name. I thought it would be okay since you use your name on your blog and I was inspired by your post. I do understand you are your son’s primary source of support and that you do have his best interest in mind. I didn’t mean to say you don’t, but at the same time Autism Speaks has interests that are contrary to the equal rights of autistic individuals. I hope that you will support your son should he decide to become active in opposing Autism Speaks when he’s older. The main point is, I didn’t mean to attack you; instead I meant to attack Autism Speaks. I am terribly sorry for having offended you.


      1. I guess I’m sensitive after coming across another commenter on my blog and I got upset. He made some very very unnecessary comments. The part in your blog post that bothered me was the end. I will never be against him. I will always be his biggest supporter.


  2. I know a few parents in the UK with autistic (severe, not Asperger’s type) children and adult children. I have not heard any mention of Autism Speaks among them — I do not believe the organisation is relevant to them any more than to those able to write and speak for themselves. Most of the problems they experience have to do with services, the authorities that provide them, and others’ attitudes. The biggest problem is that they are wrongly institutionalised (in one case I know, sent to a secure unit hundreds of miles from home) because she was disruptive while in another (local) unit, although much less so while at home with her family. There was a father who fought to get his autistic son out of a care home, where he was confined again because the authorities judged him on how he behaved there, in particularly stressful situations, not while he was at home where they didn’t see. Autism Speaks and their scaremongering about how autism steals lives doesn’t help them — if anything, it would make people think “these people need locking up”.


  3. I don’t know how a charity called ‘Autism Speaks’ can have no one with Autism actually speaking for them. Luckily, Autism speaks is not big here in the UK. I haven’t heard good things about them, and as I parent of an ASD child I wouldn’t want them representing my children. I want my son to grow up and have a voice and be able to input back in to the ASD community.


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