It's been quite a birthday in Autismland for me. Today, for the first time, someone from Autism Speaks actually listened to me. I had a lengthy talk with Kathy Streng, who is the Southeast Regional Director of Something That Is Not Exactly Clear to Me. And she was very nice, and very interested in listening.
And that has never happened before.
So thank you, Kathy.
And thank you, Jennifer.
Also thanks to the Autism Science Foundation, who let through my question today to Dr. Peter Gerhardt, another thing that has never happened before:
Does it concern you that autistic people are usually left out of organizations that study us and claim to help us? Any ideas about what could be done to improve that situation?Peter Gerhardt: It does bother me and it should be a focus of advocacy on behalf of the ASD community. I think OAR can do more in that direction as well as any number of other organizations. I am glad, however, that Ari is now on the IACC as that is the source of much funding.
From Left Brain/ Right Brain, on a recent job posting from Autism Speaks:
Let me highlight the phrase that caught my eye: “...strengthening existing markets and identifying and developing new markets”.
Before people start talking about “big Autism” and all, that’s not really my point. More my own naivety. We’d like to think of Autism Speaks’ walk-a-thons and other fundraising as being organized by the communities. But this is a $50M a year charity. That’s just not going to happen with an all volunteer organization.
It seems clear to me that in many ways Autism Speaks has self-consciously adopted Komen for the Cure as a model, substituting blue for pink, April for October, etc. There are many reasons to wonder about the wisdom of this choice, both because autism is not very much like breast cancer and because Komen may be most effective at making money for itself and its corporate partners.
From a Salon review of Pink Ribbons, Inc., a new documentary:
As “Pink Ribbons, Inc.” author Samantha King tells Salon, “People now understand disease through the lens of consumption. I talk to people who can’t really think of doing good work outside of selling or buying stuff. That’s not their experience. They haven’t been exposed to alternatives.” She goes on to explain, “Thirty years ago, it would have been unfathomable that breast cancer could generate this much support and attention and corporate funding. There was a lot of feminist awareness in the ’80s around breast cancer and women’s health. And some very smart people caught on to that and appropriated it and turned it into a marketable product.”
...As King tells Salon, “Raising money doesn’t automatically equate change. In fact, the way that this particular fundraising phenomenon works is to reinforce the status quo. It funds the same kinds of research that ask the same kinds of questions instead of research that might look into prevention or reduce the incidence rate.” But she understands the insidious appeal of pink. “People are really busy,” she says, “and this stuff is fun and makes you feel nice. But that kind of solidarity and community is fleeting, and it doesn’t sustain a political movement. I hope this film changes the conversation around what it really means to do good.”
Please take the time to read Kim Wombles' intelligent, compassionate essay on Autism Speaks and its true stakeholders:
I am not implying that Autism Speaks does all things wrong, but they often do way too many things wrong, especially when it comes to listening to those with autism who communicate clearly and eloquently about the harm the rhetoric of Autism Speaks is causing autistic people. Autism Speaks is not an evil entity, as some would like to view it. It is a mixed bag, and that is in part because it is trying to be a little bit of everything to everyone in the autism community--it doesn't want to alienate people who can bring in money, and so it often forgets the most important part of an autism organization: the autistic individuals themselves.
If you want to understand how the version of "autism awareness" promoted by Autism Speaks makes it more difficult for autistic people to be accepted by society, please read Michelle Cottle's Newsweek's article about the difficulties of parenting kids with special needs:
Then there is the 800-pound gorilla in the room: autism. In late March, the Centers for Disease Control issued an estimate that 1 in 88 children now fall on the autism spectrum. While debate rages over the roots of the “epidemic,” this swelling population is placing increasing strains on our health-care, education, and social-services systems. A study released last month put the annual cost of autism in the U.S. at $126 billion, more than triple what it was in 2006. The bulk of those expenses are for adult care. Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, calls the situation “a public-health emergency.” And if you think things are tough now, she cautions, just wait until autistic teens start aging out of the education system over the next few years. “We as a nation are not prepared.”
Notice that Cottle felt no need at all to include the feelings of any disabled people, children or adults, in writing her article. And that's not okay. This is an article about what a burden we are, about how afraid people should be of us.
And TONS of parents of autistic people will read it, and love it, because it is honest about how difficult parenting us can be. They will see themselves in it, which is an unusual and gratifying experience, so they will not notice or care that we are missing.
And there are plenty of parents who angry and bitter about their experiences who are eager to share their unhappiness with a general audience. Hannah Brown is promoting a book, and doing so by going to as many major media outlets as she can and talking about how awful life is for women like her who have autistic children. She did this at The Huffington Post and The Today Show's blog. She did it at The New York Times. And Cottle got her into Newsweek, insisting again that the lie that 80% of parents of autistic kids get divorced must be sort of true because it feels true to her:
It is perhaps unsurprising that the pressures of parenting special-needs children prove too much for many couples. There is a commonly cited statistic that the divorce rate among the parents of autistic children is 80 percent. (Toucey mentioned it during our talk.) Recent studies have debunked this figure, yet it persists among parents because it feels so true. “Based on my and my friends’ experience, that stat makes complete sense,” asserts journalist Hannah Brown, the mom of a teenage boy with autism and the author of a new novel, If I Could Tell You, about the challenges of parenting autistic children. Of her son’s condition, she says, “I tried to fight it, but it completely took over my life.” Brown recalls that when she and her husband split up, she was initially embarrassed to tell the staff at her son’s school. As it turned out, she chuckles, “they were really good at dealing with it because they deal with it all the time!”
Now, I understand why it might feel good to the mother of an autistic person to read something like this. I hope those mothers also understand why it would be hurtful to an autistic person to read this.
I am very disappointed by the number of parents I respect, who "get it", who participate in media that excludes autistic people. I would like parents to ask, when interviewed for something like this Newsweek article, "Are you talking to autistic people, too? Because if you aren't, I'm sorry, but you cannot use anything from me."
I wish parents who say they care about the voices of autistic people would tell the radio stations that want to bring them in for interviews that they will be happy to participate if autistic people are included, and to refuse to do so if not.
Again, it's important to include a parent perspective. But when that's all we get, autistic people are referred to only as problems and burdens and obstacles:
Part of what makes special-needs parenting so daunting is that the load often does not lighten with time—that golden day when one’s child is more or less self-sufficient never arrives. In fact, many parents report that the school years are by far the easiest. Autism Speaks’s Dawson says she frequently hears the shift out of school described as “falling off a cliff, because so few services are available after you exit high school.” In the wake of high school, she says, about 40 percent of these young adults have no activity outside the home, and the same percentage have no social activity.
This is what's wrong with April.
It too often turns into "be aware of how hard it is to parent an autistic child month."
And people who are seen only as burdens have a hard time getting others to see them as people. Does Dr. Dawson ever stop to think that she is making it harder for the 60% of autistic young adults who are not getting out of the house at all to find places to go when she talks about nothing but how scary they are?
Kim Wombles has announced that she received the following statement regarding the use of electrical shocks at the Judge Rotenberg Center from Autism Speaks Vice President Marc Sirkin:
"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."
Well done, Autism Speaks.
Well done, Wombles.