error in headline, sure i won’t be the first to comment. great post though.
I hate to be that guy, and I’m sure that it’s an awesome story, but there are many autistic adults that consider “Autism Speaks” to be a less than charitable organization:
“Autism Speaks” isn’t interested in trying to help autistic people; it is interested in trying to help eliminate autistic people. Subversivemom ma already linked to the statement from the Autistic Self-Advocacy Network, but I’ll quote:
I don’t think you would support torture camps to turn lgb and/or t kids cishet, so why support torture centers to turn autistic kids allistic?
Autism Speaks VP:
“We oppose the use of electric shock in behavior modification treatments. The video of the student receiving this type of treatment at the Judge Rotenberg Center is appalling and Autism Speaks joins many other organizations in calling for an end to this abuse.”
I think stating that AS is about electrocuting people is an exaggeration.
I am aware my daughter will likely be autistic for her entire life. At this point in her life (12 years), I can’t let her cross roads, or ride bikes in traffic on her own as she may be killed doing so. I don’t know if she’ll get the knack of it on her own, or if she’ll be dependent on others for travel and other neccesary issues the entirety of her life, I am for any intervention that’s minimally invasive and can lead her to live a happier healthier fulfilled life. If she lose the diagnosis of autism, that’s ok, if she never does, that’s ok too. Like most parents, I want my kid happy and safe. If oxytocin, or some similar drug, makes her happier and safer, then I’m for it, so I support research on it and similar means.
As an autistic adult, I’m really not sure where to stand on the Autism Speaks controversy. I admit I haven’t studied it extensively. It seems to me that the problem is that Autism Speaks is an advocacy group formed by and for the families of the most profoundly autistic kids, the ones who will never be able to have a normal place in society, and whose care places an enormous financial and emotional burden on their parents and loved ones. Those kids, those families, need advocates, and I can’t criticize Autism Speaks for choosing to focus on that group.
The problem is that they claim to represent the entire autistic spectrum. Yes, I am autistic, and I have struggled with a lot of things that most people take for granted. But I’ve also managed to earn a degree, start a career, support myself comfortably, and find a place in my community. There’s a lot of people like me, and it pisses us off when folks assume that all autistics are Rain Man or say things like “you can’t be, you seem so normal!”
So now here comes this “advocacy” group that has not a single autistic person on their board of directors, that tells us we’re “gravely ill”, a source of misery and despair to our loved ones, in urgent need of a “cure,” and despite years of protest from autistic adults refuses to moderate any of their language or policies…well, people aren’t real happy about that, to say the least.
My sister-in-law posted about this organization recently: Sorry, but from what she is describing, this is not an organization I would support.
BTW, the reason I’m still “not sure where to stand” after all that is that I’ve also seen some high-functioning adult autism advocates behave completely unreasonably. There was an incident a year or two back where someone had scheduled a small panel at a sci-fi con to talk about issues related to her autistic child. The local autism community got wind that there was a panel without without an adult autistic present, complained to the con-com, got the panel removed from the schedule; and then, when the lady unofficially met with a few people in the same room to discuss autistic parenting, they threw an absolute raging hissy-fit and tried to get her banned from all local cons for life. Total facepalm moment. So, sadly, I feel like I have to take a lot of my fellow adult autism advocates with a grain of salt these days.
As a person with aspergers, I could never in good conscience support Autism Speaks. It is a money making machine, using harmful rhetoric and scare tactics to pull in the millions. And the top executives are making hundreds of thousands of dollars every year. Furthermore, the AS message is less about advocating for those on the spectrum and more about finding a “cure.”
My gripe with both Autism Speaks and ASAN is that they tend to make news for what they are trying to stop rather than what they are trying to start. Lets start collaborating on making an autism friendly world.
I’m chiming in as another autistic person who has grave misgivings about Autism Speaks. Autism Speaks does not appear to do anything to change public perception of autism as a problem that must be erased with compliance to social norms. The key issue for me is that they do not have any autistic people in leadership roles. And their rhetoric is very problematic. They frame autism almost entirely as a disability, a sickness, a problem. But speaking as an autistic person, it isn’t the autism that is the problem. It is the way people react to neural diversity that is the problem. I think differently. I process stimuli different. That’s not the problem. The problem is being forced to comply and act “normal”.
John Elder Robinson sums this up very well in his resignation letter. He had been working with Autism Speaks, one of the only autistic people they had on staff.
It’s actually really great to get to the other side of the Autism issue. Neural diversity, speciation in humans, the need to challenge social norms for information processing and social behavior. We don’t want to be cured. We want other people to deal with the fact that we exist.
And as for parents of autistic children, there is a growing chorus of parents who have come out the other side. When they look at their children as just being wired differently, over and over they say their whole approach to parenting changes for the better. Autism Speaks doesn’t seem to be serving parents of autistic kids very well either.
I support the boycott of Autism Speaks. Because Autistic lives are beautiful. Meaningful. Valuable.
Autism Speaks wants them eliminated.
Please stand with me. Sign this important petition.
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