Autism Science Foundation
I hate Slate.
I hate it because of its deliberately contrarian nature-- they appear willing to publish anything that opposes conventional wisdom in a way that can be made into an infuriating enough headline that people will click on it. They are famous for this-- the #slatepitch hashtag that mocks this tendency is still going strong after three years. Emily Bazelon writes about every case of bullying by explaining why the real injustice would be requiring the bully to pay any consequences (most recently it's Lance Armstrong). They publish some good stuff, but mostly it's smart people slumming and trying to be deliberately provocative for money.
This is a typical Slate headline:
Amy S.F. Lutz has an autistic son with limited verbal expression. Her article is about facilitated communication and autistic self-advocates.
It made me sad.
I don't know what to think about facilitated communication, really. I wouldn't recommend it, but I don't dismiss people who use it. I'm agnostic. I've said what I have to say about in my review of the movie Wretches and Jabberers and in this extended piece.
I can imagine how hard it must be for someone like Lutz to see people who look like her son writing books:
Jonah was 4 years old when he started writing in chalk on our driveway without ever having been taught—although his phrases, like “FBI WARNING,” were admittedly less communicative than Carly Fleischmann’s complaint, “HELP TEETH HURT.” Despite that, I really believed, for many years, that Jonah would develop into the next Tito Mukhopadhyay, the Indian boy featured in Iversen’s Strange Son, who published several books of poetry despite autism so severe he was nonverbal; prone to constant, repetitive movements, or “stims”; and, not infrequently, disruptive, noncompliant, and even aggressive with his mother.
Now that Jonah is almost 14, I’ve come to accept that what he writes and says (he learned to speak in a rudimentary fashion when he was 5) pretty accurately reflects what he’s thinking: “No school,” “BIG orange juice,” “Mommy and Daddy leave and Jonah stays at Costco” (so he can ransack the bakery department). Not that we will ever stop pushing him, working to expand his limited communication and social skills, while trying to maintain control over the frequent and unpredictable rages that necessitated a 10-month hospitalization when he was only 9 years old—rages that made him pound his own face bloody before turning his aggression outward in attacks that left us scratched and bruised. But as far as an “intact mind”? If it means a level of articulation and abstract reasoning belied by everything Jonah says and does—well, I no longer pray for my son to be someone he’s not.
This is really complex stuff, and painful, but it's important.
Some autistic people appear to have intellectual challenges, but really they just have a hard time communicating their intelligence to us.
Some autistic people have intellectual challenges that go beyond difficulties with communication.
I don't know how you can possibly tell these people apart from the outside, but both exist, certainly.
But I have a hard time dismissing the minds of people with intellectual challenges. You don't have to be conventionally smart to have good ideas, just like you don't have to be conventionally attractive to be a good spouse.
So much pain, so much anger.
Lutz spreads unsubstantiated gossip about Amanda Baggs:
I exchanged emails with one of her old acquaintances. Although he confirmed that the statements he wrote online were accurate, he couldn’t say anything else: Baggs’ lawyer had contacted him and warned that such statements could result in legal action.
Then she uses the general doubts about FC to attack other, specific self-advocates.
Finally, we get to the political attack against all autistic people who dare to speak for ourselves:
Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world. This latter position is espoused by the autism rights movement, also called the neurodiversity movement, which has evolved over the past two decades from an ad-hoc association of individuals with high-functioning autism or Asperger’s syndrome and their families into a powerful lobby led by organizations such as Autistic Self-Advocacy Network and Autism Network International. ANI’s founder, Jim Sinclair, wrote the famous 1993 essay “Don’t Mourn for Us,” which accused parents who long to cure their children’s autism of really hoping “that one day we will cease to be, and strangers you can love will move in behind our faces.” Today, neurodiversity activists sit on the Interagency Autism Coordinating Committee (which advises the National Institutes of Health on how to allocate its autism research budget) and the National Council on Disability.
See? You can't let autistic people on important things like boards! They're all fakes! They have a dangerous agenda of taking money away from the people who really need it-- the parents of very visibly disabled children-- and wasting it on selfish faker grown ups.
So says Alison Singer of the Autism Science Foundation:
On a political level, “neurodiversity advocates have definitely succeeded in implementing their agenda,” says Alison Singer, founder of Autism Science Foundation and a member of the Interagency Autism Coordinating Committee. “You can see it in the strategic plan [of IACC]—there are more studies focused on higher-functioning adults and the services they need, such as finding employment. But because we’re reallocating money, not increasing the budget, that means shifting funds away from the needs of lower-functioning children, who need treatments, for example, to help them control self-injurious behaviors.” And that shift may become more pronounced once the new edition of the Diagnostic and Statistical Manual of Mental Disorders is published in May. By eliminating the Asperger’s syndrome diagnosis, as the DSM-V is expected to do, and redirecting all those high-functioning individuals into the autism diagnosis, the overall percentage of low-functioning autistics will drop—making it even easier for the high-functioning lobby to shunt aside those who might technically share the same diagnosis but have completely different needs.
So what happens to neurodiversity if its lower-functioning supporters are discredited? The movement is exposed for what it is: a group of high-functioning individuals opposed to medical research that, as Singer puts it, “they don’t need, but my daughter does. If she were able to function at their level, I would consider her cured."
I will never understand why people give Alison Singer money.
Or why the Autism Science Foundation lets her talk in public.
I was appalled when the following "quick fact about autism" came through my Facebook feed from the Autism Sceince Foundation today:
It is possible to detect signs of autism in infants as young as 6-18 months. For example, if a baby fixates on objects or does not respond to people, he or she may be exhibiting early signs of an autism spectrum disorder.
You know who diagnosed her baby with autism at six months?
And then she killed him.
Autism is a developmental delay.
Kids have to have had a few developmental milestones before you start saying they have autism.
Diagnosing autism in infancy is foolish and dangerous.
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.
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.
How do you keep autistic people out of the media?
How do you make sure that the only view that the American public gets of autism comes from scientists and family members?
How do you make sure that autistic people are always viewed as problems and are never allowed to be part of their own solutions?
How do you keep autism in headlines associated with doctors and scientists so that people never stop thinking about it as a medical crisis?
Well, you start by creating events like IMFAR, the International Meeting for Autism Research, happening this week in Toronto.
You hope that there will be a big media ready story to report, like the one about infant head lag. That one's really ideal in that it is a little scary but reinforces the belief that existing treatments are much more effective than they actually are.
And then you set up a panel to coach scientists on how to get their research into the media.
I've talked before about how irresponsibly journalists treat autism research that may be promising but is not yet to be proven enough to be of value to the general public. I've featured two pieces that I found through The Thinking Person's Guide to Autism recently that more convincingly make similar points: "How Most Autism Science Is Distorted Before You Read It" and "Monkeying Around with Vaccines and Autism."
So it's sadly ironic to read TPGA's report today on a panel that Alison Singer of the Autism Science Foundation "put together and chaired" for the purpose of teaching scientists how to get journalists to cover their research.
Actually, autistic self-advocates would do well to read the article and follow much of the same advice:
Work with your local media and become a "go-to" source. Will pay dividends on your own papers.
But I would think that the head of an organization like the Autism Science Foundation would recognize that coaching scientists on how to manipulate the media is probably not in the public interest, as in these tips that PR expert Jane Rubenstein gave on conducting interviews:
- LISTEN to the question
- Pause before answering, take a breath. You'll appear more engaged.
- Don't jumped to answer.
- Control your head not
- Take a breath and assemble your response
- Do NOT fill dead air, they may be trying to lure you off-message
- NOTHING IS OFF THE RECORD
Have a PR person listen in on your call, they can moderate, and can give you feedback & constructive advice.
Note, by the way, that The New York Times, which often makes a point of including autistic people when they write about autism and incurred the wrath of Ms. Singer's ASF colleague Eric London by putting the safety of autistic people in state run homes above the reputation of Risperdal, is singled out for accusations of pettiness:
Sometimes there are games afoot: NY Times downplayed recent CDC numbers announcement because the CDC played favorites, and gave it to the anther source first -- NY Times felt it wasn't "their" story, so they didn't run it on the front page.
Also notice this:
Dana's talk was geared towards talking with autism families. TPGA editor and self-advocate Carol Greenburg asked Dana a question and talked with her after the session about how best to include autistic people in media coverage -- she and Dana agreed that the media has a responsibility to include the expertise of autistic people when they consult "experts" like scientists, and that the media should put more effort into serving as a bridge.
It's sort of cool that TPGA points this out and definitely cool of Carol to ask about it.
It's also sort gross to go this far to put a good face on a simple fact:
Alison Singer, Dana Marnane, and most of the other people from Autism Speaks and the Autism Science Foundation are hostile to autistic people and actively promote through events like this a culture of media bias against us.
People who respect autistic people let us speak for ourselves and do not keep making excuses for people who have built careers on silencing us and who show no signs of stopping.