Tag Archives: Autism Speaks

“You Are Not Like My Child” #AtoZChallenge

Welcome to day 25 in the A to Z Challenge on autism. Wow, we’re almost done! Today, I discuss a statement often made by parents of “low-functioning” autistic children towards adults with autism: “You are not like my child.”

This statement is often used to discredit adults with autism who want to advocate against a cure or who want to advise parents against certain treatmets for autism. In a way, oof course, the parents are right, in that no-one is exactly like their child (not even that child’s hypotehtical identical twin).. Of course, parents have the right to make decisions about their child’s health, so it isn’t like an adult with autism has the right to make that decision (unless the adult happens to be the parent of an autistic child too).

However, this usually isn’t about adults trying to make decisions for other people’s autistic children. I for one recognize parents’ decision-making rights and I have never directly intervened in a parent’s decisions that I did not agree with. However, the parents in this situation often use these words to discredit autistic adults trying to advocate for themselves and their right to remain the best autistic people they can be.

I, in fact, have had people tell me that, unless I agreed that I was nothing like their autistic child, I should get a fad treatment to get cured of my autism. This disrespects adults’ rights to make medical decisions for themselves.

Another aspect in which parents and adults with autism have opposite interests, and in which this statement is often used, is representation of autistic adults in organizations like Autism Speaks and the Autim Society of America. It is a fact that thse and other such organizations have few or no autistic adults on the board of directors. Autism Speaks used to have John Elder Robison as a poster puppet, but that’s about it. In few other disability communities do parents say that adults with said disability cannot represent themselves, but in the autism community, it is a common idea. When Ari Ne’eman was eelect into the National Organization on Disability, parents everywhere protested. Now I for one do not agree with everything Ne’eman says and I do feel he’s a bit too inexperienced to serve on a government advisory board. However, I do not see why, just because he isn’t a parent, he can’t be on the board.

Let’s face it: we are not like your child. We are adults. However, autistic adults at one point were autistic children, and many had the same problems today’s autistic children are facing. Parents could learn from how we coped.

I do not say that there are no autistic children with an intellectual disability or who are non-verbal, but there are autistic adults with these challenges too. Also, if an autistic adult appears to function well now, it doesn’t mean they functioned as well as a child – or even that they function as well in real life now.

I consider myself a moderate mama on many debatable autism issues, but one thing I can’t stand is being silenced for being disabled. This is exactly what the “You are not like my child” crowd do.

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.