Best of: Bernie vs. Brynna The Trouble with Autism Speaks
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 protected]
Peter “DAN! Doctor” Bell: [email protected]
Bob Wright: [email protected]
Suzanne Wright: [email protected]
**
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:
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.
With extreme annoyance and frustration,
JB Handley
JB Handley is Co-Founder of Generation Rescue and Editor at Large for Age of Autism.
Speaking as an outsider who has no autistic child and have had no contact with Autism Speaks, I have to say that it would appear that this organisation has been penetrated by vaccine manufacturers or AAP members who are very much culpable for the devastation of autism in the US and have their backs to the wall.
Posted by: Cherry Sperlin Misra | January 08, 2009 at 01:32 PM
Thankyou to Robin Nemeth for what she has done and what she will do tomorrow and the days after. Thankyou for writing about it here because it gives others courage when they need it. You wont know when that occurs, but know that it does.
Posted by: Cherry Sperlin Misra | January 08, 2009 at 12:57 PM
i was all signed up to go and do a autism speaks walk. but i never went, after reading posts here and starting bio med treatments with my son i couldn't support something that didn't support me and my son. i can't raise money for something that has been no help to me or my son. they couldn't even point me in the right direction. the ARI website was where i found my answers and the beginning.
Posted by: jill r | December 13, 2008 at 05:30 AM
An even better review of one of the films here -
http://www.truthout.org/111208A
One Company's Toxic Agenda or Our Poisonous Way of Life? Marie-Monique Robin's "The World According to Monsanto"
Wednesday 12 November 2008
by: Leslie Thatcher, t r u t h o u t | Review
Posted by: anonymous | December 12, 2008 at 04:32 PM
There is an obvious alliance between groups demanding food safety and groups representing those who may have been injured by regulatory agency failures.
http://www.seedsofdeception.com/Public/MediaCenter/index.cfm
QUOTE: New Health Dangers of Genetically Modified Food (and Vaccines) Discovered
In his two books and the DVDs featured at his site, Jeffrey M. Smith details the career ending consequences of genetically modified food safety research for a number of scientists and the misguided blind support by government for biotech.
Paraphrasing Japanese officials commenting on Japan's ban on GMO containing foods (from one of the films below): "We'll study the health of American children in 10 years and then decide whether to lift the GMO food ban."
http://www.seedsofdeception.com/Public/TheGMOTrilogy/index.cfm
or
http://www.greenmuze.com/reviews/films/494-the-world-according-to-monsanto.html
The World of Monsanto
http://www.seedsofdeception.com/GMFree/AboutGMFoods/WorldAccordingtoMonsanto/index.cfm
Posted by: anonymous | December 12, 2008 at 03:12 PM
I put this on my blog and sent it to all the emails you had in the story.
This is why I hate Autism Speaks!!!
I admire Katie Wright for coming out and telling what is going on at Autism Speaks.
http://www.ageofautism.com/2008/12/a-message-to-au.html#more
People if you are doing the walks to get fit then that is fine but if you think the money you are helping raise is going to find a cure then you need to wake up. Hey, keep walking because it costs a lot for them to keep their office on Park Avenue in New York!!!
I have contacted many of them at Autism Speaks here in America, Canda and U.K. Oh yes they have many offices in different countries and I have contacted them all to help me spark clinical trials for Adult Stem Cells from cord blood for Autism but they wanted nothing to do with it!!!
I think this lady would like to hear how you feel, please don't be shy, be very blunt with her on how you feel!!!
Dana Marnane
National Director of Communications and Marketing
Autism Speaks
2 Park Avenue, 11th Floor
New York, NY 10016
[email protected]
There is only one Autism organization that I truly believe that cares about finding a cure and that organization is http://www.generationrescue.org/. I have spoken to J.B. Handley the founder on the phone and thru emails many times. I admire the guy, he is real and he cares deeply!!!
Posted by: Daniel Faiella | December 12, 2008 at 12:58 PM
I think the ultimate point of all of this is, Autism Speaks... but can they, will they, listen?
Posted by: Jan | February 22, 2008 at 02:40 PM
I post on the boards for autism speaks. I notice that many parents want to know more about biomed interventions and other therapies. As well as clinical trials and ongoing research and resources.
When I made my site, I put up somethings to help. There are few places on the web that actually have parent ratings for biomed interventions as well as letting you know what the side effects are and how the children do overall. I think its important for parents to know these sites and find resources like that.
I have often answered questions directing people to sights. One person needed a site that had special clothing. There is also pdr for free the physicians desk reference and you can put in medications or alternative and search it for free. It will tell you the overall effects. So I found three sites for that as well as a place for parents to get one free evalution for disability if it didn't go through. These folks evaluate your case for free and give you pointers. Not to mention the blog by a man who worked with the system and gives you tips for free and how to write this stuff. Or the man from california who gives you great tips and putting together the letters and forms to get the insurance companies to pay.
I think parents like myself need those. ALthough my site is about a particular therapy, we also try to let parents know these kinds of things. For example did you know there is a bill where you can take a tax deduction for biomed. Lets say you have to have your child on medication and some supplements will you can look it but they have a bill for that.
I have been looking on their boards to see where they list these things for parents. I found things for casien free gluten free, Iep help and free sites with activities for the children. Why isn't anyone doing this?
We made our site because you can upload 30 videos at a time and parents can comment and offer each other help and be interactive. They can make their own groups for free blog and chat. Its there to give parents help and support.
I do my best to help with what I can. There is a lot out there you just have to know where to look and what your looking for. Sometimes you can get sidetracked from your original vision. That can happen to anyone.
Posted by: Alexis | February 22, 2008 at 01:31 AM
Hi JB,
March 2007: "These folks supported us with our CAA bill and we need to keep them in our tent."
June 2007: Autism Debate Strains a Family and Its Charity http://www.nytimes.com/2007/06/18/us/18autism.html
Somewhere between March and June 2007 Autism Speaks decided to be very much like NAAR. Would NAAR have supported any of the following?
* 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.
NAAR founder Eric London called Dr. Rimland's work "junk science". Of course there is no link to DAN, or discussion of recovered kids on the Autism Speaks website. http://www.autismwebsite.com/ari/newsletter/garbagescience.htm
An Age of Autism reader,
Kevin Barry
Posted by: Kevin Barry | February 21, 2008 at 11:45 PM
I think that is a great letter that summarizes your frustrations with Autism Speaks. I understand those frustrations and argue with my wife quite frequently about them. She comes from a large non-profit and makes some good points about the role Autism Speaks and their ability to do that role.
I think ultimately they may not be the best avenue to get our message out, and maybe that is okay. Because there are other things they can do. They can work with AAP to get better screening to catch kids earlier. Sure, the AAP won't be able to help them, but at least they'll have a six-month head start on finding there way to Generation Rescue and ARI. They can work with legistlatures to get better insurance coverage and better long term care. They can get an autism symbol on the pace car of the Daytona 500.
While, in my opinion, those things pale in comparision to biomedical treatment and prevention of even more vaccine damage, they are needed too. And to accomplish those things they do have to toe a certain line. I'm not a fan, mind you, and my money won't go there, but they do play a role and to play that role they have to be in a more "mainstream" position.
Posted by: Jack Russell | February 21, 2008 at 01:05 PM
They have further, on a much grander scale, perpetuated the myth that autism is not reversible and is not caused by mercury. They get no kudos from me. I cannot tell you the stress I endured on their message boards when I was trying to get help for my child and emotional support for myself.
Posted by: biomedmama7 | February 21, 2008 at 01:01 PM
I saw Suzanne Wright on Larry King awhile back. I had heard through the grapevine that her grandson was doing much better. Larry asked her how he was doing and she completely avoided the question and changed the subject. Autism Speaks have their own agenda, raising money; forget that they are going in the wrong direction. The last thing they want to talk about is a recovered child. Why would they need money if kids are getting better? That's what my skeptic husband said. One thing Autism Speaks has done is raise public awareness and we can at least thank them for that. Maybe they will listen to us and change directions.
Posted by: Diane Farrr | February 21, 2008 at 11:58 AM
Ohio. I was mortified to read this in the Schafer Report last night.
AS, this would be a good issue to take on, FOR US! I have no doubt that the "message" you have been sending out with what you finance (and don't) and what you post on your website (and don't) contributes to exactly this type of thing. Do you really now know what is going on at AS?
Govt. agencies have poisoned our children and now government agencies refuse to help them. Private insurance companies are also refusing to help them. This CANNOT BE ALLOWED TO CONTINUE FOR ANOTHER SECOND!!!!!!!
http://www.dispatch.com/live/content/local_news/stories/2008/02/20/AUTISM_RULES.ART_ART_02-20-08_B4_TI9DH56.html?type=rss&cat=&sid=101
By Alan Johnson for The Columbus Dispatch
After listening to anguished, tearful pleas from the parents of autistic children for more than two hours yesterday, a state panel allowed a new rule to take effect that will reduce or eliminate services for many of the disabled youngsters.
When the meeting of the Joint Committee on Agency Rule Review was over, Tina Vetter of Columbus sat motionless in the front row of the rapidly emptying Statehouse hearing room. Tears streamed down her face.
"I feel like they just pushed my son off a cliff," she said.
Vetter's 5-year-old son, Murphy, has severe autism but has made dramatic progress in the months he's been attending Step by Step Academy of Worthington, his mother told state lawmakers. Step By Step specializes in the treatment of autistic children.
The new rules were proposed by the Strickland administration to bring the state program into compliance with federal Medicaid regulations. Medicaid pays for most of the autism program through the Ohio Department of Job and Family Services.
Further, the Franklin County Board of Mental Retardation and Developmental Disabilities and two other boards across the state complained to the Strickland administration about how much they have to pay as the local funding match for the costly autism services.
In the end, lawmakers sided with the rule makers instead of the parents.........
Posted by: biomedmama7 | February 21, 2008 at 10:18 AM
When I sought my own autism diagnoses, about twelve years ago, I remember going through the list of traits in the DSM. I remember that I couldn’t decide if I really fixated on things or not. If I had said ‘yes’, regarding the fixations, it seemed to me that I would’ve qualified for an Asperger diagnoses. However I wasn’t sure, so it didn’t surprise me all that much when I wasn’t diagnosed.
It’s really hard not to fixate on something though, when, whenever you try to discuss it, it seems that there is always someone there lying to you, lying about you, or attempting to shut you up.
When I’ve spoken about thimerosal in the internet political chat rooms over the last four or five years, that is what has happened to me. And last April, when I went to a local Autism Speaks benefit concert in order to stand outside on the sidewalk and hand out information about thimerosal, autism, and vaccine safety, I was threatened with arrest by the concert organizers and the House of Blues management if I didn’t desist, even though I was within my rights to be on the sidewalk handing out information. The police incidence report reads that I was ‘threatening staff and guests’, which is a lie. I was doing nothing of the sort. My husband was with me and will vouch for this, and there were plenty of other people present as well who know what transpired.
Ms. Shari Goldberg, the local Cleveland chapter president of Autism Speaks, later lied publicly, on a local internet support forum called AutismNE, when she said that the arrest attempt never occurred.
The moderator of the forum, herself the mother of an autistic boy, herself on the spectrum, while perfectly happy to allow Ms. Goldberg the use of her internet support group to solicit donations for Autism Speaks, denied me the opportunity to defend myself by posting a copy of the police incident report which I believe supports my statements. (http://www.wideopenwest.com/~r_nemeth/HOB_incident_report.htm)
I have gone to local autism support meetings here in the Cleveland area.
There were the NAA meetings. I no longer go to those. The president’s wife has little to say to me about the matter of the arrest attempt and about the matter of the censorship, other than to say that she’s been friends for a long time with the AutismNE forum moderator. I have copied the Cleveland police incidence report so that she can see that I am not lying, that my husband and I are not making this up. Her husband had spoken to me briefly about the arrest attempt, last spring, shortly after it occurred. He was told by friends, I had been informed, of our presence at the Autism Speaks benefit concert. He had been informed by friends that police were called. His friends, if they saw my husband and I there that night, surely could have told him that what I did that night could hardly be construed as threatening or harassing to anyone. I am left completely at a loss to understand her. Either she doesn’t speak with her husband, or else she doesn’t believe him, or else it doesn’t bother her at all that the thugs who raise money for Autism Speaks attempt to use the threat of arrest in order to stop people from disseminating information about mercury in vaccines. It also doesn’t bother her, apparently, that they have no qualms about using the funds they raise to support people who spread lies.
Apparently her friendships are the most important things to be considered in all of this.
Then there are the ASGC (Autism Society of Greater Cleveland, which is I understand part of the ASA) meetings, which I still go to, although I have to wonder why. I can write to them of the things that happened to me—of censorship, of threats of arrest (Two police cars were sent to the House of Blues on the night of April 21. My husband wondered if he was going to have to post bail, if I had insisted on staying and if I’d been arrested. I was really scared, and I’m still scared whenever I think about it.) And yet time and time again I see the people I’ve spoken to or written to, at the next meeting, glad handing, smiling at, hugging the people who are responsible for doing these things. It all makes me quite sick to my stomach.
I will continue with the ASGC meetings. I’ve gotten a bit of interesting information from them. I will start wearing my tee shirt every time I go, the one that says ‘Autism, it’s no mystery, it’s mercury’. I should have been all along, but I kept on telling myself that word is getting out and that I could afford to slack off a bit. But I will not be spending one dime on any benefit concerts or other donations to these organizations. Not for Autism Speaks, not for the NAA, not for the ASA. A couple of months ago I had to spend five dollars for a yearly membership to the ASGC. When they want more money from me for membership fees I will refuse to pay and if it means I can no longer attend their meets, oh well, so be it. If they want to know why, I will be glad to tell them.
They all seem to be doing quite well enough without my time or money. They have their parties and their chili cook offs and their benefit concerts and their censored internet support forums. And their little autistic children, who as it so happens I rarely see.
I will however, no doubt, continue to be fixated on vaccines.
Posted by: Robin Nemeth | February 21, 2008 at 08:59 AM