Managing Editor's Note: This post ran last February. In light of Katie Wright's post yesterday, we thought'd we re-run it to show that not much has changed at America's (and the world's) largest autism charity in the last year.
By J.B. Handley
In March of 2007 I wrote an essay titled “Bernie Versus Bryna, the Trouble with Autism Speaks” that was widely circulated on the web (full text at the end of this post). At the end of the letter, I encouraged parents to write Autism Speaks directly to express their frustration with the organization’s direction.
As of today, I’m certain that Autism Speaks heard from many members of our community, often quite loudly.
The recent emails that I have featured in my columns have created a great situation where I now get more and more emails from all kinds of people that are of interest to our community.
I found this most recent chain that a reader forwarded to me to be particular interesting.
After reading my original post on “Bernie versus Bryna,” a Mom named Lynne sent an email to Suzanne Wright, Co-Founder of Autism Speaks:
“I have been so very pleased with Autism Speaks until recently. I was so proud of your strength, numbers, and how the message was getting out there. I saw Autism Speaks on the Apprentice and on the Comedy Channel. There seemed to be more coverage on the news about autism. I was also so pleased to see that Autism Everyday was played at the Sundance Film Festival that is the only film that captures my daily pain. However, lately, I am losing faith in Autism Speaks. Why isn't biomedical treatments mentioned? Why aren't you talking about recovered kids? I personally know two really recovered kids. The DAN protocol has been saving my son. I believe in it because I see improvements everyday! Why aren't you represented at the DAN Conference? Why aren't you beating the doors down of these recovered kids to see what helped them?”
It’s hard to put it much better than that. Apparently, Suzanne Wright heard the message loud and clear, because she sent this email on to AS President Mark Roithmayer:
“Help! I can no longer ignore the Lynne's of our Autism world. I have received so many of this message today and I'm afraid it's only the beginning. Can we send someone to the Dan conference?? I need to discuss with you our answer to these e mails. These folks supported us with our CAA bill and we need to keep them in our tent. Thanks, SW”
It’s hard to put it much better than that, too. Suzanne heard from a ton of parents, and she put out the message internally that something needed to be done.
A bit later in the chain, Peter Bell, second in command at Autism Speaks, added the following gem:
“In the spirit of full disclosure, Liz and I have seen several DAN! practitioners over the years for Tyler. We started in 1996 with Sid Baker (from CT), one of the founders of DAN!, and saw him for 3 years. We later saw Jeff Bradstreet and Andy Wakefield. More recently, we have seen Jaquelyn McCandless since we moved to LA (we also see Ricki Robinson). Some DAN! practices have been extremely helpful for Tyler while others have not. We honestly don't ever know what will work for Tyler and what won't. Sid Baker called Tyler the "paradoxical kid" for years. But we have a strong belief that we don't ever want to leave a stone unturned and that's why we continue to keep an open mind and explore all reasonable avenues. We continue to have many good relationships with DAN! practitioners. Many of them are good clinicians, albeit somewhat unconventional. I hope this helps. We do need to find a way to work with this community. Peter”
Um, yikes. That sort of sounds like something one of “us” could have written.
Yet, here we are. Almost 1 year later. The Autism Speaks’ website still has no mention of biomedical intervention, no link to DAN!, and no discussion of recovered children.
Unless parents stop attending walks for Autism Speaks, stop attending fundraisers, and start protesting some of these same events, I wonder if things will ever change. I hope you’ll take the time to give Autism Speaks another piece of your mind:
Mark Roithmayr: email@example.com
Peter “DAN! Doctor” Bell: firstname.lastname@example.org
Bob Wright: Bob.Wright@nbcuni.com
Suzanne Wright: email@example.com
Original post, March 2007:
Bernie Versus Bryna, The Trouble With Autism Speaks
By J.B. Handley
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:
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."
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.
With extreme annoyance and frustration,
JB Handley is Co-Founder of Generation Rescue and Editor at Large for Age of Autism.