A few weeks ago in my post on Rett Reversal and Neurodiversity I wrote
Now that there is a real possibility of a cure for Rett Syndrome some time in the future, will it undermine the movement for autism acceptance and encourage those whose aim is normalization? Some will certainly see it that way. But in the short to medium term I predict that it will increase the tension between organizations like Autism Speaks that are funding research into genetic causes for autism and those like NAA and Safe Minds who think they already know the cause and the cure and are only interested in research that confirms their prejudices.
Well, it has happened. J. B. Handley, the driving force behind Generation Rescue and Put Children First, is circulating a letter entitled Bernie versus Bryna: The Trouble with Autism Speaks
Bernie refers to Bernard Rimland, the recently deceased founder of the Autism Research Institute [ARI] and Defeat Autism Now! [DAN] Rimland has done more than anyone to promote the idea that autism can be treated with alternative therapies like megadoses of vitamns, special diets and chelation for heavy metal poisoning. Bryna refers to Bryna Siegel who wrote The World of the Autistic Child and is very much in the autism mainstream. Handley is upset because Autism Speaks is sponsoring a conference hosted by Jump Start in San Francisco this Friday [March 9th] at which Siegel is the keynote speaker. This is why.
Bryna Siegel diagnosed my son. My son was the first client of “JumpStart” when it was still a part of UCSF and just in its infancy. Bryna Siegel told us that the GFCF diet was a “placebo for parents.” She has testified in court for vaccine manufacturers to ward of Thimerosal lawsuits (something she does not disclose to you while telling you the vaccine-autism link has been disproven.) She thinks the Danish studies thoroughly refute the Thimerosal-autism hypothesis. She told us our son had no “theory of mind” and that he’d probably never talk.
A parent who attends this workshop and asks a question about biomedical treatment will be told by an “expert” that biomedical treatment does not work. I should know, that’s what she said to me and my wife.
And, that’s my point about Autism Speaks: way too much Bryna and not enough Bernie.
Handley believes that there is an autism epidemic caused by mercury in vaccines. He believes in special diets, supplements and chelation therapy. He is using them to try and cure his son. He is mad at Autism Speaks founders Bob and Suzanne Wright because they have not publicly embraced and endorsed DAN and ARI. He finds this particularly galling because their autistic grandson is being treated by a DAN practitioner.
But that is not the whole story. The Autism Society of America [ASA] and ARI announced a research partnership in October last year. But Rimland died shortly afterwards and there is little evidence on either organization’s website of progress in this area. At the same time Autism Speaks has been making real headway. Its video, Autism Every Day, received widespread coverage, including a showing at the Sun Dance Festival and was heavily promoted among politicians in the run up to approval for the Combatting Autism Act. Autism Speaks marked the anniversary of its successful merger with the National Association for Autism Research [NAAR] in February by finalising a merger with Cure Autism Now. [CAN] Autism Speaks was quick to announce its role (courtesy of CAN) in the recent widely publicized report of the Autism Genome Project. Autism Speaks has also established itself in the UK and in Canada. While its US website still affirms its commitment to
funding global biomedical research into the causes, prevention, treatments, and cure for autism.
the UK website has a much more inclusive statement that avoids mentioning cures.
This is part of an inevitable process of accommodation. Autism Speaks has an ambition
Collaboration means compromise. Working in the mainstream means that you adapt to the consensus. In the UK the consensus is more congenial to autism acceptance than it is in the USA. So Autism Speaks has adapted. Some advocates for neurodiversity remain deeply suspicious. I tend towards a cautious and watchful acceptance of their good faith, in the UK at least. Handley, on the other hand, is outraged because he suspects that Autism Speaks are going to drop their support for biomedical interventions to cure autism and accept that autism is more genetic than environmental. These are his complaints against Autism Speaks.
1. You do not mention DAN! or biomedical treatment on your website, and you have no link to DAN! or ARI or any of the groups on our side of the fence.
2. When you eulogized Bernie Rimland on your website, which would cause him to roll-over in his grave I am certain, you did not even mention biomedical treatment or recovered children, this is a glaring, glaring omission that speaks volumes about the mindset of the people running your organization.
3. Your scientific advisory board is populated with some of our world’s worst enemies, including some who have stated on the record that there is no autism epidemic. And, your research choices support this. (The only environmental research you can claim to have sponsored deals with prenatal insults with the notable – and commendable – exception of Richard Deth).
4. When I met with AS in the Fall, I asked a simple question: “Are you sending anyone from your organization to the DAN! Conference?” After some silence and stumbles, everyone turned to Andy Shih and his answer was basically “No.” The only person in the room more annoyed with this answer than myself was Katie Wright.
5. None of the research ideas presented to you by Laura and Lyn have received further study or consideration, as far as I know.
6. Kevin Barry, our former President, was hired by Autism Speaks. On his first day of employment, Mark Roithmayr informed Kevin that he was only there “as a favor to Katie” [ the mother of Bob and Suzanne Wright’s autistic grandson]
7. You succeeded in completing alienating Deirdre and Don Imus, our community’s most important public advocates.
8. The clarification by Alison Singer regarding her unambiguous statement to the Wall Street Journal only further clarified how far Autism Speaks is from the environmental camp. I’m pretty sure we are soon going to see funding to try to unravel the “genetic epidemic” we are experiencing.
I will not go into all these points right now. I expect other Autism Hub bloggers will have something to say about this. Handley ends by giving the email addresses of some Autism Speaks luminaries for you to complain to. If they have managed to annoy Handley so much I suggest that congratulations and encouragement to do more of the same are in order.
Mark Roithmayr: mroithmayr@autismspeaks.org
Bob Wright: Bob.Wright@nbcuni.com
Suzanne Wright: suzanne.wright@nbcuni.com
With extreme annoyance and frustration,JB Handley
It could be, JB, that you might be wrong. Just something to think about.
Action For Autism 
I’m not all that fond of Bernie or Bryna’s ideas. Wonder where that leaves me. 😛
I am with you there, Ballastexistenz.
I think the difference is that we could, concievably, enter into a dialogue with Siegel that held out the prospect of change. With Rimland and his acolytes there is no such expectation.
How come Bob and Suzanne still have NBC corporate email addresses? I bet JB Handley doesn’t have their current email addresses. 🙂
Can someone ask Suzanne her hat size? Or would that be rude?
Sounds like JB would like Autism Speaks to be a quackery-pushing organization, where anecdotal accounts of “recovered children” (who don’t look very much recovered) is taken at face value, and where biomedical interventions are just believed to work in the absence of clinical trials.
Many of the higher ups at Autism Speaks probably do see things a lot like JB Handley does, but it would clearly destroy their credibility to take that sort of position publicly.
In his EoH screed, JB Handley also said:
“What I actually feel the Wrights are guilty of is:
1. Listening to dinosaurs with degrees instead of their daughter, Deirdre Imus, and others speaking the truth, myself included.”
Why wouldn’t one forsake the wisdom of experts in the field in favor of a radio personality’s trophy wife and an uninformed, messianic investment manager?
Hee! I would have guessed #1 above was something out of a parody of Handley…but no, stunningly enough, he seems to be serious about it.
“I tend towards a cautious and watchful acceptance of their good faith, in the UK at least.”
Do I hear the beginnings of grudging acceptance? Maybe Bob has had more time to do some research into autism since he’s losing his NBC gig and he and his wife might slowly turn around.
As far as Handley and his ilk, I envision it like a group surrounding a ranting lunatic, slowly dispersing, shaking their heads as he desparately tries to convince them that the conspiracy is true, the sky IS falling, the martians have landed, lee harvey oswald was framed…
ignore him and he’ll go away…
Bill
Let’s do a layman’s summary of JB’s complaints.
1. You don’t have enough woo.
2. You don’t have enough dead peoples’ woo and you’re mean.
3. You don’t agree with us.
4. You don’t have enough woo.
5. You don’t agree with us.
6. You’re ignoring us.
7. You’re being mean to our friends.
8. You don’t agree with us.
Wah. He should take his ball and go home. Maybe there is a good reason that Autism Speaks did not choose the name “Mercury Poisoning Speaks”.
I’m with Bill, there is always the possibility of Austism Speaks evolving in the LONG-TERM in to an advocacy organization. I’m not saying it’s likely, but possible.
Think of how mad JB would be if there were a neurodiverse blogger on the scientific advisory board, as it is AS’s SAF has some of their “world’s worst enemies!” gasp.
But JB, their non-scientific board has queen mercury mom, Sallie/Sally Bernard on it! Is that not enough? She’s the first author on the paper, “Autism: a Novel Form of Toxicy from Whatever Product I can Sue Some Corporation For”.
I am annoyed with AS regarding the bloody awful film but, like Mike, I have hopes (maybe forlorn) that they will move towards actual advocacy.
Autism Speaks has come out pretty clearly against the autism-mercury connection.
http://www.autismspeaks.org/science_policy.php
“The body of evidence gathered through epidemiologic research to date does not currently support a causal relationship between thimerosal in childhood vaccines and autism risk. However, it is very difficult for even the best epidemiologic study to rule out the existence of small susceptible subgroups of children with autism in whom thimerosal exposure may have played a causal role.”
And then they direct parents to this pamphlet, which is about a strong a statement against autism-mercury as you can imagine.
Click to access vec_thimerosal.pdf
Tom, I agree. I think it likely that Bob Wright did reach his level of achievement without a pretty good head on his shoulders. He can recognize that there is no logic left in the autism-mercury nonsense, and he is behaving accordingly. JB Handley is simply indulging in wishful thinking if he thinks Bob Wright will change his mind.
Sure guys, with goals like this: “We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism”
Sounds like “actual advocacy” to me…..
It’s not April 1st on your side of the Atlantic is it? Something I’m missing here???
Good Grief! The Stanford Rugby Towel Boy needs to read my book.
Listen closely and you’ll hear the cell phones ringing with boot-licking apologies… or maybe not.
#6 has to be true. Who would embarrass their friend like that on a whim? Handley made Barry really look like a loser with that bit. So, thanks Brad.
No jypsy – I’m pretty sure it won’t happen but….hope springs eternal…they have to modify themselves for the UK and that means dropping the ‘cure’ bit for a start.
and I thought *I* was a hopeless optimist….
Here in Canada, Autism Speaks Canada is represented by some of the same ABA folks we know all too well
I think there’s a tussle going on right now for the soul of AS. If they carry on down Brad’s path or the ABA path then we’ll know they’re not really interested.
hi jypsy
what kev said. I think AS is heading down the mainstream cure and prevention path. They are only interested in respectable science and don’t want DAN types spoiling their image. Whether it is good science is another matter entirely.
But even if AS focuses on genetics they will probably keep saying, “we need a world without autistics, they spoil the view.”
More in-fighting and this time JB is taking a knuckle-rapping. This is from Bob Krackow to JB Handley on EoH list:
“JB,
The Wrights knew the CAA bill would not have thimerosal and vaccine
research in it when Santorum and Frist called them to Washington then
recruited them as CAA runners.
Why should anybody believe that you or any of the other complicit
ones didn’t have the same knowledge.
I believe the full story is important.”
Hey Zeus,
sorry for the late appearance. You fell into my spam trap.