You are here

Bernie versus Bryna: The Trouble with Autism Speaks

A letter by JB Handley posted on the phoenixkids email list: I have tried to hold my tongue and be patient with Autism Speaks, and I have had it and I'm done. I met with Bob and Suzanne Wright this Fall, and I consider Katie Wright and her husband Andreas to be friends, and it's time that this organization got a wake up call from the parent community. If you are going to consolidate all the national organizations and claim to represent the autism community, than for God's sake, do so. For me, this is the last straw, an announcement that came out today, which you can read about here: http://www.emediawire.com/releases/2007/3/emw509236.htm On the surface, this would appear to be a good thing – Autism Speaks is sponsoring a one-day workshop for an organization called JumpStart, the purpose of which is to "highlight treatment strategies for children with autism spectrum disorders." Sounds good. The announcement goes on to note that "featured speakers include internationally known autism specialists Bryna Siegel, PhD." Hard stop. 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 toward 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. When I met with Bob and Suzanne Wright, I was in a room with Lyn Redwood, Tommy Redwood, Will Redwood, Laura and Scott Bono, Mark Blaxill, Kevin Barry, Katie and Andreas, Suzanne and Bob Wright, and, from Autism Speaks, Andy Shih and the President of Autism Speaks, Mark Roithmayr. They told us they wanted to be inclusive, put everything under the tent. So, here's a message to Autism Speaks: you haven't!! Some simple examples: 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" 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 don't care if you piss more money down the genetic rathole. (I do find it ironic that the most likely outcome of genetic research is pre-birth screening that leads to abortions – something the Catholic Wrights may not be too wild about.) I don't care if Gary Goldstein continues to give himself and his buddies millions of your research dollars. What I care about, plain and simple, is that you have consolidated the national organizations while showing a clear and obvious bias against: Funding post-birth environmental research Funding trials for any biomedical interventions Pursuing the recovery stories that DAN! is more than happy to share with you Dealing in any explicit way with the vaccine issue Educating anyone reading your website that many parents believe biomedical treatment has recovered their children. Christian Wright was the inspiration for Autism Speaks. You have all seen his porphyrin test. He is being treated by a DAN! Doctor. Your tent is missing a very, very important part of the Autism community. His name is Bernie and he is everything that Bryna will never be. Let them know how our community feels: Mark Roithmayr: mroithmayr @ autismspeaks.org Bob Wright: Bob.Wright @ nbcuni.com. Suzanne Wright: suzanne.wright @ nbcuni.com With extreme annoyance and frustration, JB Handley ************************************** adding to JB's list of Autism Speaks contacts: **take the spaces out of all the e-mail addresses*** "Jacqueline Carmosino, Executive Administrator" < jcarmosino @ autismspeaks.org>, "Tonya Elliott, Executive Assistant to the President" < telliott @ autismspeaks.org >, "Constance Frenzel, ATP Outreach Coordinator" < csfrenzel @ gmail.com >, "Lisa Gallipoli, National Director of Field Operations" < lgallipoli @ autismspeaks.org >, "Laurie Gray, Administrative Assistant, Northwest Region" < lgray @ autismspeaks.org >, "Janis Guerney, Washington Representative" < jguerney @ autismspeaks.org >, "Alycia Halladay, Associate Director of Research + Programs" < ahalladay @ autismspeaks.org >, "Liz Harris, Program Associate" < lharris @ autismspeaks.org >, "Tom Hetzel, Chief Financial Officer/Controller" < thetzel @ autismspeaks.org >, "Carolyn Komich Hare, Clinical Coordinator" < chare @ autismspeaks.org >, "Susan Kravitz, Grants Administrator" < skravitz @ autismspeaks.org >, "Suzanne Lanthier, Greater Toronto Regional Director" < slanthier @ autismspeaks.org >, "Jaclyn Merens, South Florida Regional Director" < jmerens @ autismspeaks.org >, "Kim Niederst, Senior Regional Director" < kniederst @ autismspeaks.org >, "Jennifer Parsons, Communications " < jparsons @ autismspeaks.org >, "Jane Pickett, Director of Brain Resources and Data – ATP" < atp @ brainbank.org >, "Michelle Preslar, Carolinas Regional Director" < mpreslar @ autismspeaks.org >, "Dina Schwab, New Jersey Area Director" < dschwab @ autismspeaks.org >, "Glenn R. Tringali, Executive Vice President" < gtringali @ autismspeaks.org >, "Ellen Xiu, Autism Tissue Program Data Coordinator" < exiu @ autismspeaks.org >