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
the UK website has a much more inclusive statement that avoids mentioning cures.
Autism Speaks is a registered charity that raises funds to accelerate biomedical research to determine and understand the causes and biological basis of autism spectrum disorders; and through that understanding to discover and promote new ways of improving the quality of life for all those affected.
This is part of an inevitable process of accommodation. Autism Speaks has an ambition
to become a worldwide organisation by developing communication, organisational and fundraising models that encourage funders, researchers and those affected by autism to work collaboratively across geographies to ensure that the needs and priorities of each are met.
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: firstname.lastname@example.org
Bob Wright: Bob.Wright@nbcuni.com
Suzanne Wright: email@example.com
With extreme annoyance and frustration,
It could be, JB, that you might be wrong. Just something to think about.