Today, Autism Speaks is sponsoring a conference for families and professionals called "Treating the Whole Person with Autism: Comprehensive Care for Children and Adolescents with ASD."
It featured my favorite neurotypical autism expert:
Peter Gerhardt, Ed.D., director of the McCarton Upper School and chair of the Scientific Council for the Organization for Autism Research, emphasized the need to continually think of the changing care needs across the lifespan. Dr. Gerhardt stressed the importance of making optimizing adult outcomes a much higher research priority. In particular, he noted the need to identify and focus on meaningful knowledge and skills vital for independence and fulfillment.
And then there was a lot of stuff about gut bugs and genetics.
Chief science officer Geraldine Dawson said:
"The theme of this conference, treating the whole person, reflects our ultimate goal of helping individuals with ASD to have healthy and successful lives."
But is that the ultimate goal of Autism Speaks? Or, as they are telling Walmart shoppers across America, is Autism Speaks "dedicated to finding a cure for Autism"?
It's nice that the Twin Mills Camping Resort is raising money for Autism Speaks. It would be even nicer if the version of Awareness that Autism Speaks espouses in 2012 included telling them that many autistic people feel hurt when NT people give events to raise money for us names like "Camp for a Cure."
Oh-- and Autism Speaks is advertising on thAutcast today! So they can pay for you to read why I think eugenics are a major part of their agenda.
Thanks, Autism Speaks!
Why Do Autism Speaks and the Autism Science Foundation Care More About Dead Autistic Brains Than Living Autistic People?Submitted by Landon Bryce on Mon, 06/25/2012 - 15:06
Question: Why did the very unfortunate destruction of many frozen autistic brains at Harvard spur more action from Autism Speaks and the Autism Science Foundation than the death of any actual autistic person ever has?
The Harvard fiasco, first reported by The Boston Globe, has accelerated efforts by advocacy groups to reach out to families who might donate, said Alison Singer, president of the Autism Science Foundation. “I made calls as soon as I heard what happened,” she said.
Geraldine Dawson, chief science officer at Autism Speaks — the group that administers the autism brain donations at the Harvard bank — and a professor of psychiatry at the University of North Carolina, said, “This is indeed a setback, but it has motivated us more than ever to rebuild this precious resource.”
Answer: Because the death of an autistic person, although it might tell us something about how to improve the quality of lives of autistic people, is not going to tell us much about how to prevent the existence of autistic people.
But their family's donation of their brain might.
The May 14 issue of Newsweek carries a letter from me, a shorter version of this response to an article about the difficulties of parenting people with special needs:
I understand that the focus of Michelle Cottle's article was on parenting, but I think those of us with special needs should have had a chance to respond to people like Geraldine Dawson and Hannah Brown who are eager to promote their own interests by emphasizing the difficulties that we cause for others. Please, let us speak for ourselves."
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?
Since The New York Times published an article last week suggesting that many people who currently are diagnosed with autism will not meet the new criteria that have been proposed for the next edition of the standard diagnostic manual, the internet has exploded with opinions. My opinion is here, and I collected earlier reactions here.
John Elder Robison shares my belief that we need to focus more on resources than on diagnostic standards:
I do understand why people express concern, when they say words like that might be interpreted very narrowly for the purpose of reducing the number of individuals diagnosed. However, I do not think that was or is the intent of the framers of the ASD definition.All that aside, I do think people who receive services face a real threat of interruption or disruption when this change takes place. Not because they “won’t have a diagnosis,” or for any clinical reason. Rather, I think people with autism are at risk to lose services because ignorant, ethically challenged, or financially pressured bureaucrats will use the diagnostic evolution as justification for changes that may benefit some other group at our expense. Obviously, not every government official or service provider will think this way, but some surely will, and we need to both be on guard and continue to raise awareness about this risk.
For this is the real threat to the autistic population, from the DSM changes. "Losing a diagnosis" is a red herring.
Many school are already using any loophole they can find to escape IEPs and their obligations under the spirit of the law. State social service agencies can be even worse. A big change like this could make that kind of treatment easier for them to justify and perpetrate, and that is bad.