Something Has Happened

Two weeks ago I took a break from blogging to spend time with family who came to visit. Last week was a work catch up week, and I have only begun to catch up with all that has happened in the autism world while I was gone.

As I have been reading, I am seeing things that are surprising me. It is freaking me out a little.

Something has changed around the Cedillo Trial.

I have been following autism news for three years and I have never seen the kind of stories/events that are surfacing.

Dave Weldon and Carolyn Maloney have introduced bipartisan legislation, the Mercury Free Vaccines Act of 2007. Autism Speaks has uncharacteristically decided to back it and oppose AB 16 in Sacramento that would mandate that the State of California automatically adopt any vaccine that the CDC puts on the schedule (and pushed the HPV vaccine). They have never taken a stance on vaccines before. AS is also listing mercury research that was funded by CAN before the merger on their web site, but someone who spends a lot of time on the site said they didn't remember every seeing this page there before. (Anyone know if this is new, or remember seeing it in the past?)

AS has also stepped into the insurance coverage legislation in PA and announced legislative efforts on their web site.

The CDC issued a response to Verstraeten/VSD on their web site with lots of references to thimerosal studies. (I haven't had a chance to read it yet), but how long has it been there? It is not dated and David Kirby, who is a guy who keeps track of these things, didn't even know it was there until a few days ago.

The run up to the Wakefield MMR Trial has reignited doubt in the vaccine in the UK and articles like these are coming out:

At Last They Admit It, This Jab CAN Harm Your Child

The Truth About MMR

DANGERS OF MMR JAB 'COVERED UP'

The Autism Research Institute is now being backed by the giant Autism Society of America, which is now teaming up with Easter Seals who will now make Autism their priority.

Over the last three years, my blog has been visited occasionally by CDC and NIH and a few other government agencies. These visits were few and far between, and always interesting to me when they happened. But now, ramping up with increasing frequency since about April, my blog has been regularly visited by The Powers that Be CDC, NIH, FDA, EPA, HHS, the House and the Senate, The Department of Justice (who are the governments "defendants" in the Cedillo Trial), The Department of Veterans Affairs, The US Forestry Service, The Naval Research Laboratory, Lawrence Livermore Laboratory, The US Census Bureau, dozens of foreign, state and local governments, a slew of Canadian government agencies, dozens of medical centers/health organizations/universities/dental schools including CHOP (Paul Offit's hospital), Johns Hopkins, The Cleavland Clinic, our pharma friends at Johnson & Johnson and Glaxo Smith Klein, Immunize.org, media corporations Tribune and Gannett, The World Health Organization and even one visit from the Nuclear Regulatory Commission

Apparently the Department of Justice is curious to know when and if the Evidence of Harm movie will be coming out.



Here is my blog traffic graph for the last three years.



2005 - nice little blog with decent traffic. 2006 - took a break from blogging for most of the year. 2007 - Started to write again. Feb/March stats broke but I didn't notice. April was Autism Awareness Month (Damn that is a lot of awareness). May - residual autism awareness?? June - suddenly I am twice as fascinating as I have ever been on my best month! July - on track to have 8,000 visitors despite the fact that I have been on vacation most of the time.

As much as I would love to believe that it is my brilliance that people are coming for, it is probably a safer bet that more people (and more people in positions of power to do something) are awakening to the reality that autism is preventable and treatable and are taking valuable time out of their day to investigate for themselves.

Last month I said that the tide had turned. I think I might have been righter than I thought I was and that the tide might start moving faster than I had anticipated.

Even if I had 40 hours a week to sort all this stuff out, I don't think I could do a decent job. I am just going to start posting references to stories with out much comment just so I can get as much out as possible.

Requesting Answers and Actions from Autism Speaks

June 28, 2007

From: Ginger Taylor, M.S. of AdventuresInAutism.com

To: The Greater Autism Community

For just over a month I, and many others, have been writing about our concerns over the way Autism Speaks has been using its considerable resources. During its two year existence, funds have been directed toward projects that yield little improvement in the quality of life for those with autism and AS has reportedly shown an unwillingness to cooperate with, or even acknowledge the contributions of, all but a few large autism groups. This action is in direct conflict with the public image held out by AS that they listen to all those in the autism community and that they wish to speak for the autism community.

Because Autism Speaks is raising tens of millions of dollars a year from the public based on their claim that they are serving people with autism, they must be held to account if these funds are not indeed being spent on projects that serve autistics.

Thus far, the only response from anyone at Autism Speaks has come from Jon Shestack, founder of Cure Autism Now and board member of Autism Speaks. Mr. Shestak has posted a public letter stating his earnest intentions, asking for restraint and patience in criticizing AS to give them a chance to respond on the merits, and calling on the board of AS to do some self examination to see if it is time for a change in direction. I believed that his public stance was both reasonable and admirable, and I committed to waiting to hear from AS.

After a week, during which Mr. Shestak stated his intention to respond to my open letter to him, the silence has continued. It is rumored that AS has no plans to comment on the issues that have been raised because they believe that ultimately the controversy will not cut into their bottom line. I do not know if this is accurate information, but it may explain the deafening silence from AS.

In light of this, I am proposing that those in the greater autism community, those who have not been invited into the “Big Tent” that Autism Speaks has stated that it wants to be, express their concerns and frustrations directly to Autism Speaks in one concerted effort. For the next two weeks I will be collecting letters from those in the autism community, both from individuals and organizations, who wish to directly question AS on their direction, methods and actions, and who wish to make specific requests of them. I will be delivering these letters to Autism Speaks under one cover letter.

If you would like your letter to be included, here are the requirements:

• Your letter to Autism Speaks be in good faith.  This is not an opportunity to vent the frustration that many of us have, but to open a constructive dialogue and attempt to get real answers and action. 


• Your letter to AS be specific.  List specific complaints and specific actions that you want taken.  In my letter to Mr. Shestack I asked, “… if we compile a list of hard questions that we want answers to, a list of “awareness” messages that we want circulated, a list of service projects we want undertaken, a list of legislation that we want lobbied and a list of research that we want funded, will the AS board give us open, concrete answers and actions, or legitimate justifications where they will not?”  Your letter should be such so that AS can have the chance to make specific answers and take specific action.


• Your letter to AS remain private for the time being.  Autism Speaks should have the opportunity to respond privately, either to you specifically or to the group as a whole, before the letters are made public.  You may not post your letter publicly until AS has had a reasonable amount of time to respond to it privately.  I will announce an agreed upon date.


• Your letter must be signed and include your contact information.


• Your letter must be submitted to me at ASLetters@AdventuresInAutism.com by July 13th, 2007

This debate as to how to best serve those with autism is becoming increasingly contentious. While that is regrettable, it is also reasonable because ultimately, the quality of the lives of millions of people world wide is at stake. It is my belief that the only thing that will change the tone of this debate is very frank, very transparent conversation followed by very concrete action. The days of paying lip service to the treatment and care of those with autism, and those yet to be born who may potentially be autistic, are long gone.

It is time for those who hold the most power in the autism world to allow themselves to be held accountable to those whom they claim to serve.

Ultimately the only value in this exchange will be if it leads to improvements in the quality of life for those with autism, their families and their care givers. It is my earnest hope that this will refocus our efforts onto serving them directly.

Sincerely,
Ginger Taylor, M.S.
AdventureInAutism.com

Saturday: Katie Wright on Air America

"Katie Wright, the mother of an autistic son who links his condition to thimerosol, the mercury preservative in childhood vaccinations", will be interviewed on the Ring of Fire radio show on Air America on Saturday.

Autism Speaks Aint Speakin'

For the last month or so other bloggers and I have been pointing out the serious ethical problems of Autism Speaks. Last week, one of the board members, Jon Shestack, wrote a personal note to those like me who have been critical of Autism Speaks, asking for us to use restraint in our criticism and to give AS the time to answer our charges on the merits. He also called on the board of Autism Speaks to do some soul searching to see if it was time for them to change direction.

Well more than a week has gone by since then, Jon Shestack has been arguing with some in the ND crowd, but no one at AS seems to be offering the "defense on the merits" that we are supposed to be waiting for.

So exactly how long are we supposed to wait patiently?

The Rescue Post: AS and NYT... again

Last week a new autism blog was launched by the folks at Generation Rescue. The Rescue Post will be authored by several writers in the autism community and I will be contributing in time as well.

Today Kim Stagliano points out another New York Times/Autism Speaks convergence.

Injecting Sense into Autism Speaks, Part 3 - Alternatives

Wade has posted part three of Arrogance and Assimilation, his three part series on Autism Speaks.

In it, he discusses The Autism Society of America and the shift of their focus back to the ideals that Bernie Rimland had when he started both ASA and the Autism Research Institute.

Is ASA looking to step into the breach and be the large organization that will pick up the biomed torch?

Go read Wade's post, then come back and read the rest of this one.

HOLD MUSIC PLAYING

Today on the Evidence of Harm list, David Humphrey, ASA board member, left the following post on a thread discussing ASA. ASA recently added Stephen Edelson and Martha Herbert to their board, both of whom are members of 'our team':

ASA is changing. The description of a loosely former network of chapters that pretty much operate of their own is correct.

The national ASA is made up of a Board of Directors democratically elected by ASA membership except for 2 appointments (I am one of the appointments). This group acts much more decisively and raises its own money. It does represent the 120,000 families that are members of the local and national chapters.

In the recent ASA national and regional election Steve Edelson of ARI and Doreen Granpeesheh both won against strong ASA chapter leaders.

Bernie Rimland founded ASA. They last formal action of his life was to negotiate with ASA and ARI a far reaching agreement in a Memo of Understanding.

I discussed this at length with Bernie and Steve Edelson - for those of you that knew Bernie - his vision was incredible - and he didn't compromise.

He saw a new future for ASA that would unite the parent community around TREATMENT NOW and meaningful research that improved the lives of families.

He saw ARI continuing its bold advocacy and sponsoring promising emerging treatments.

As a board member of ARI and well I am committed to both of Bernie's goals.

The national ASA accepted the MOU with Bernie 13-0.

13-0

It was not a strategic decision.

It was the right thing to do. Decided by good people.

The recent MOU with Easter Seals will be announced July 12th and will continue to define the future. The announcement will bring a new wave of changes we all have been advocating.

The ASA options policy is to respect all parents opinion and treatments as long as it does not create obvious harm.

ASA is an easy target since each chapter can make a mess out of unity and openness.

ASA will emerge into how Bernie sees it - provided we do this together.

If ASA does not work - it will take a long time to create something else in its place.

David Humphrey

David is right in his estimation of Bernie. Bernie was a put up or shut up guy. If ASA was not on board with the program, he would have dismissed them, as he did for years, until they came back to the table just before he died.

The Autism Charity shuffle that is currently going on needs a score card to keep track of. I might just post something that can help us all sort out who is who and what they believe and are doing.

In the mean time, Autism Speaks still (arrogantly) remains silent on the criticism, Jon Shestack has taken a detour to argue with some of the more unforgiving voices in the neurodiversity movement (a path that usually yields few results of understanding or consensus and becomes difficult to extract oneself from) and we all wait for the word of the Special Masters.

If the Evidence of Harm movie is a hit, then I think that we have a sequel.

Injecting More Sense into Autism Speaks

Wade has posted part two of his three part series on Autism Speaks.

More charges and question for AS to answer.

Benjy's Death

For the last few days, while I was focusing on the drama playing itself out on the front page of the New York Times, a more important drama has been playing itself out in the back ground. The search for missing autistic 7 year old Benji Heil who walked out of his home last Thursday night and who had hundreds of people, including our own Nancy Cale of Unlocking Autism, coordinating search efforts and walking for miles to find him.

The search ended yesterday in tragedy. Benjy's body was found, were we all worried it would be, in the water. Our children love the water.

Officially it is said that people with autism live a normal life span. Autism parents who see this same story happen over and over again believe that that official opinion is not based on any study of what actually happens to these children.

This is another example of what I believe is the primary reason that a "cure" for autism now is so important, that this world is a dangerous place for people with autism.

In our last home Chandler had gotten good at getting out of the house, even climbing the kitchen cabinets and out a high window. One of the reasons we bought the house we live in now is that it is not an open floor plan, it has lots of rooms, all with doors that close. We have installed locks on some of the inner rooms so that to get out of the house from any exit, he has to get through two locked doors.

But there have been two times that we forgot one lock and the neighbors have brought him back over to us when he knocked on their door because he wanted to play.

Thank God he headed for their house and not for the water.

Our condolences and prayers go out to Benjy's family and all that are grieving him.

Body of missing autistic boy recovered in Wisconsin
Associated Press

WISCONSIN RAPIDS, Wis.— The discovery of a 7-year-old autistic boy's body in a pond not far from his home Tuesday ended a community search effort that drew hundreds of volunteers each day since he disappeared last week.

Even those who weren't in on the organized search for Benjamin "Benjy'' Heil stayed on the lookout for him since he vanished Thursday, said town of Nekoosa resident Darcy Peckham, 33.

"It's a tragedy that this whole community is going to have a hard time getting through,'' said the mother of six. "I've got children of my own that age, and it just makes you realize how close that family is. You realize that, wow, in a split second it can all be gone.''

Wood County sheriff's Lt. Dave Laude said the boy was found about 11 a.m. in a pond adjacent to Ten Mile Creek less than a quarter mile from his town of Saratoga home. A search dog led to the discovery, he said.

Wood County Coroner Garry Kronstedt said an autopsy was scheduled Thursday in Portage.

The boy had been playing in the basement when his family realized Thursday evening that he was gone and called authorities.

Hundreds of people turned out each day to look for the boy.

RFK Jr. Defends Katie and Autism Moms

I needed this.

Attack On Mothers
by Robert F. Kennedy Jr.
HuffPo

The poisonous public attacks on Katie Wright this week--for revealing that her autistic son Christian (grandson of NBC Chair Bob Wright), has recovered significant function after chelation treatments to remove mercury -- surprised many observers unfamiliar with the acrimonious debate over the mercury-based vaccine preservative Thimerosal. But the patronizing attacks on the mothers of autistic children who have organized to oppose this brain-killing poison is one of the most persistent tactics employed by those defending Thimerosal against the barrage of scientific evidence linking it to the epidemic of pediatric neurological disorders, including autism. Mothers of autistics are routinely dismissed as irrational, hysterical, or as a newspaper editor told me last week, "desperate to find the reason for their children's illnesses," and therefore, overwrought and disconnected.

But my experience with these women is inconsistent with those patronizing assessments. Over the past two years I've met or communicated with several hundred of these women. Instead of a desperate mob of irrational hysterics, I've found the anti-Thimerosal activists for the most part to be calm, grounded and extraordinarily patient. As a group, they are highly educated. Many of them are doctors, nurses, schoolteachers, pharmacists, psychologists, Ph.D.s and other professionals. Many of them approached the link skeptically and only through dispassionate and diligent investigation became convinced that Thimerosal-laced vaccines destroyed their children's brains. As a group they have sat through hundreds of meetings and scientific conferences, and studied research papers and medical tests. They have networked with each other at meetings and on the Web. Along the way they have stoically endured the abuse routinely heaped upon them by the vaccine industry and public health authorities and casual dismissal by reporters and editors too lazy to do their jobs.

Many of these women tell a story virtually identical to Katie Wright's -- I have now heard or seen this grim chronology recounted hundreds of times in conversations, e-mails and letters from mothers: At 2-1/2 years old, Christian Wright exceeded all milestones. He had 1,000 words, was toilet-trained, and enjoyed excellent social relations with his brother and others. Then his pediatrician gave him Thimerosal-laced vaccines. He cried all night, developed a fever and, over the coming months, this smart, healthy child disappeared. Christian lost the ability to speak, to interact with family members, to make eye contact or to point a finger. He is no longer toilet trained. He engaged in stereotypical behavior--screaming, head-banging, biting and uncontrolled aggression, and suffers continuously the agonizing pain of gastrointestinal inflammation.

After hearing that story a couple dozen times, a rational person might do some more investigation. That's when one encounters the overwhelming science -- hundreds of research studies from dozens of countries showing the undeniable connection between mercury and Thimerosal and a wide range of neurological illnesses. In response to the overwhelming science, CDC and the pharmaceutical industry ginned up four European studies designed to disguise the link between autism and Thimerosal. Their purpose was to provide plausible deniability for the consequences of their awful decision to allow brain-killing mercury to be injected into our youngest children. Those deliberately deceptive and fatally flawed studies were authored by vaccine industry consultants and paid for by Thimerosal producers and published largely in compromised journals that neglected to disclose the myriad conflicts of their authors in violation of standard peer-review ethics. As I've shown elsewhere [see www.robertfkennedyjr.com], these studies were borderline fraud, using statistical deceptions to mislead the public and regulatory community.

The CDC and IOM base their defense of Thimerosal on these flimsy studies, their own formidable reputations, and their faith that journalists won't take the time to critically read the science. The bureaucrats are simultaneously using their influence, energies and clout to derail, defund and suppress any scientific study that may verify the link between Thimerosal and brain disorders. (These would include epidemiological studies comparing the records of vaccinated children with those of unvaccinated populations like the Amish or home-schooled kids who appear to enjoy dramatically reduced levels of autism and other neurological disorders.) The federal agencies have refused to release the massive public health information accumulated in their Vaccine Safety Database (VSD) apparently to keep independent scientists from reviewing evidence that could prove the link. They are also muzzling or blackballing scientists who want to conduct such studies.

Ironically, it is the same voices that once blamed autism on "bad parenting," and "uninvolved" moms that are now faulting these mothers for being too involved.

Due to this campaign of obfuscation and public deception, Thimerosal-based vaccines continue to sicken millions of children around the world and potential treatments -- like the chelation that benefited Christian Wright -- are kept out of the hands of the mainstream doctors now treating autistic kids with less effective tools. Like thousands of other mothers of autistic children, Katie Wright knows what sickened her child. Her efforts to spare other families this catastrophe, deployed with a cool head and calm demeanor, are truly heroic. Maybe it's time we all started listening. Maybe it's time to start respecting and honoring the maternal instincts and hard work of Katie and her fellow mothers by aggressively funding the studies that might verify or dispute them.

Jon Shestack of CAN and Autism Speaks Makes A Personal Response

This morning Jon Shestack, founder of CAN and board member of Autism Speaks left a very personal, very public response to the events of the last month that culminated in yesterday's New York Times front page story on the Wrights. I am honored that he chose to make his response here on my blog.

Mr. Shestak's remarks and my response [A-CHAMP's John Gilmore's response has been added:

I write first as the father of Dov, a 15 year old boy who is very challenged by autism., Secondly as the founder of Cure Autism Now and finally as a board member of Autism Speaks.

I was moved when I read Katie Wrights letter on the NAS website. I thought it was brave, and thoughtful and courteous. And because there has been so much strife in our community and I have felt so heartsick about it, her letter moved me to share some thoughts---

Katie Wright is a devoted mom with a very sick child, and she is looking high and low for something that will help him.

Bob and Suzanne Wright are loving parents and grandparents dealing with a double shot of grief, one for their daughter and one for their grandson. They, too, are looking as hard as they are able for something to help him.

And so am I. The search for answers is what prompted me to start Cure Autism Now.
And though we haven’t found the answers yet, the one thing I am pretty sure about is that we won’t find them any faster by insisting that everyone search in exactly the same place.

Whether we try to heal autism with environmental research, genetic research,
prayer books, Phds , double blind studies, or business plans written by consulting firms, aren’t we all honest, brave, sad and good? Don’t we all love the autistic people in our lives for who they are, and don’t we all also want more for them?

Is there a family that hasn’t had a fight? Aren’t we all just so frantic sometimes as we desperately search for ways to help our children? Don’t even the best of us sometimes get angry and cast blame? Here’s is just the briefest sampling of my family dialogue , tell me if it doesn’t sound familiar:” If only we’d started ABA earlier,… We should have done floortime….We can’t vaccinate the others…Are you kidding? They won’t let them into school… I want to go gluten free….I’m just grateful he’s eating anything even if it is 100 grilled cheese sandwiches…. No wonder he’s autistic, your family is crazy…. Mine? No you must be mistaken, you are a nut, and your nutty family is definitely nuttier… have you talked to your father lately…No?...my point exactly…”

And yet, what do we agree about in our family? We agree that Dov deserves our love, our respect, our commitment, our hope and our hard work, We believe that he is counting on us to help him. Dov who can only communicate by painstakingly slow typing, knows he is autistic and he has told us many times that he doesn’t like it. And so our family will put aside our squabbles as best we can and keep on working.


To the activists, bloggers and the journalists I want to beg for just a little mercy and restraint. Let us make our own best arguments on the merits rather than use this one family as our proxies.

There are so many things we need to fight for together,. We need more research, more trained therapists, we need Medicaid waivers, IDEA funding, the kids in the neighborhood to be more kind and less cruel. We don’t really need hate mail and editorials that make us out to be idiots. The last thing we need to is fight against each other. There are real enemies out there. There is a disorder that is crippling a generation and there is a government that takes very little interest. If I have learned anything in ten years of lobbying it is that the feds love it when we are factionalized and fighting amongst ourselves. It buys them one more year when they don’t have to do anything.


To Katie, I’d like to say thank you. Your letter was strong and kind. You have been brave. I’m glad you are in the fight, I hope you stay in it., We need many voices.

I agree with you urgency is still so very important. I have been working to find treatment and a cure for autism for 14 years and I am NOT doing it for the next generation. I am doing it for this generation.


To the board and supporters of Autism Speaks, if some of our critics are right, and urgency isn’t a big enough part of our vision, then we need to change. The same with treatment. Even while the larger answers to larger questions may take more time, people with autism can have a better quality of life today and we must help that happen.

If we are not seeking out new ideas and fresh talent, then we must change. If innovation is somehow perceived as the enemy of excellence, then we must change. If we don’t deeply understand that in order to lead we must serve, than we must change.

I think we haven’t gotten it totally right yet at Autism Speaks. But we are new and we trying really hard .We are trying to integrate a couple of strong, proud organizations, we are trying to move fast, and occasionally, we stumble. I hope we recognize that we can learn and improve.


We will have faith, but we will earn our miracles. We will use our hearts and our minds to grab them from the dreamy future and bring them here today. We will find the best scientists and encourage them to use all their wisdom, art and discernment to treat and to cure autism. And when we have done that, we will do it again the next day. We will be optimistic, but not satisfied, we will question authority, despise complacency and above all love our children---for that is the obligation without end whose reward is also without end.

In peace,
Jon Shestack

Mr. Shestack,

First, thank you very much for offering a public response to what has transpired over the last month. Doing so, and doing it with such vulnerability, leaves you open to attack from all sides and I deeply respect the fact that you have stepped out like this.

I also want to acknowledge your good intentions and years of dedication, and those of the Wrights. Love, heartbreak and frustration are what brought all of us into this fight, and your story is our story.

Unfortunately, if good intentions and love alone could heal our children, then they would be the healthiest people on earth. Our loving efforts must be balanced with Truth in order for real change to take place.

We are all still in the process of coming out of the dark with autism, and when you began your journey into autism, there was much less information available than when Katie and I began ours (our boys are about the same age). Because so much in our understanding of autism(s) is changing so quickly, for any of us, holding onto the paradigms that were in place when we started out does a monumental disservice to the families that come after us.

I applaud your call to the Autism Speaks board for self-examination and change where change is due. As I have written, the capacity for the good that AS can do with all of its resources is tremendous. Dr. Kreigsman’s testimony in the hearing last week on how Autism Speaks efforts changed the medical industry standard for dealing with our children’s GI issues is proof of what can happen when AS takes risks. They brought together the top doctors in a medical field and the controversial innovators who have come under fire, but are successfully treating autistic children’s medical problems, and a new consensus was reached on how our children can be helped.

It is very clear that the thing that prevents this from happening more often is the vaccine question. Good treatments for our children are being left uninvestigated and unpromoted because they are based on the premise that many cases of autism were triggered by vaccines. Until the non-profit community, the medical community and the research community stop being afraid of the vaccine question, until they stop running from any treatment that, if successful, gives credence to the idea that we are over vaccinating our children, then no more progress will be made and our children and their families will continue to suffer.

We fully understand that if AS begins to openly move in a direction that even hints at giving legitimacy to the further examination of the vaccine question, that it will be unpleasant consequences. There have been for any one in this arena who does. But ignoring the hard questions just cannot be done any more. The tide just can’t be held back any more.

The Wright’s very public split on this issue is proof. Parents who see their children fall ill after vaccination, descend into autism, read all the relevant research and begin to see their children recover when biomedical interventions are implemented can not, in good conscience, sit by and watch millions of dollars being poured into research that is yielding no results for children with out taking a stand. Even if that stand costs them the relationships with their dearest loved ones.

Thousands of children are recovering from autism through biomedical intervention and the DAN protocols. Many children are making a full recovery and loosing their autism diagnosis. The longer that biomedical interventions are ignored by charities, doctors and the government, the uglier and deeper the divide in our community will become.

You have called for bloggers like me to exercise restraint and mercy and allow Autism Speaks to make it own defense on the merits. I will absolutely commit to you that I will offer that to Autism Speaks. I want AS to make a good defense where they can, and to have the wisdom to accept criticism and change where they can’t. I want AS to be successful in finding a cure for autism.

But offering AS a chance to make a defense on the merits requires them to actually make a defense on the merits. Autism Speaks has committed from the beginning that they would listen to parents. Parents have now been talking for two years, and respectfully, we would like a response. We want an open, honest, on the record dialogue with AS, and we want firm commitments with deadlines as to when they are going to do what. We are no longer satisfied with hearing that AS is “open” to all sides. We don’t want openness, we want answers and action.

So if we compile a list of hard questions that we want answers to, a list of “awareness” messages that we want circulated, a list of service projects we want undertaken, a list of legislation that we want lobbied and a list of research that we want funded, will the AS board give us open, concrete answers and actions, or legitimate justifications where they will not?

Will Autism Speaks allow proponents of biomedical intervention and research like the Autism Research Institute, the National Autism Association and A-CHAMP into their “Big Tent” and give their lines of inquiry equal weight or greater weight (where the facts merit) as those of CAN and NAAR?

That is what it will take to end the painful division, both in the Wright family and in our fractious community. Anything else will just prolong the pain.

Again let me express my gratitude for your being so vulnerable with your struggle. I want to honor your affection for all affected people, and your transparency and teachability on these issues. It is humbling to me and I hold it out as an example for all of us to follow as we struggle with what to do about autism.

If there is anything specific I can do to help mend the rifts, create constructive dialogue, and get us on the road to real change, I am eager to do so.

Thank you for hearing our urgency.

In hope of healing,
Ginger Taylor

UPDATE: A frank reply from John Gilmore of A-CHAMP and Autism United:

Dear Mr. Shestak,

We have not met, but I too am the father of a child who has autism. My son’s autism, like yours, I am sure, alters every aspect of our family life. I love my son. Like you do yours and just as I am sure that Christian Hilldebrand is loved by his family. But I am not sure how any of this is relevant to the serious policy differences that divide the autism community.

I also believe your appeal, “To the activists, bloggers and the journalists I want to beg for just a little mercy and restraint.” is completely misdirected. Just like the Wrights put their ambitions for Autism Speaks before support for their daughter, it isn’t the autism bio-medical community who is responsible for the constant barrage of distortions, factual errors and character assassination that passes for coverage of autism issues in the mainstream media.

In their mission statement Autism Speaks claims one of their goals is “to bring the autism community together as one strong voice.” The question is: “What will that voice say?” And I for one, am not at all convinced that Autism Speaks has said anything yet that will benefit our children.

Autism Speaks can choose to finance yet another decade of inconclusive genetic research. They can continue to refuse to address the issue that the logical conclusion of this work is the development of pre-natal testing and wholesale abortion, as has happened with Down Syndrome and Tay-Sachs disease.

They can continue to finance witnesses to testify against vaccine-injured children. They have every right to subsidize cultural anthropologists who do epidemiology finding no net increase in the autism incidence rate. They can continue to refuse to use the dreaded word “epidemic”.

Autism Speaks has every right to hire former pharmaceutical company executives to promote side-effect laden psychotrophic drugs.

Autism Speak can continue to pretend to work collaboratively with other autism organizations while cutting secret deals on legislation.

They can continue to refuse to finance any research into promising treatment modalities that we know are used by the children of the leadership of Autism Speaks.

They can continue to have representatives of the CDC on their board, an agency which has seen the autism rate increase by two orders of magnitude without any expression of alarm proportional to the public health disaster they pretend not to see.

Autism Speaks can remain silent over the professional lynching of Andrew Wakefield, while Christian Hilldebrand benefits directly from Wakefield’s courageous work.

They can take $25 million from Bernie Marcus, the leading advocate in the nation for taking away medically-injured people’s rights.

The Wrights can continue to vilify their own daughter in public the way so many of us are undermined at every turn by family, school, insurance companies and medical professionals.

Autism Speaks has the right to do all these things. And you have the right to do all you can to assist them in their efforts.

They can do all of this, but they can’t keep the truth from the parents who are paying attention, because we also have the right to point out the contradictions, screaming silences and hypocrisies and come to our own conclusions.

Autism Speaks appeared out of nowhere and has made a big splash, and maybe it will disappear just as fast. In the meantime many of us are working as hard as we can with ACHAMP, Autism United and other organizations to try and get the legislation, services and research that will actually benefit our kids. And Autism Speaks is perfectly able to help us do that. If they don’t I am fairly certain eventually they will fade away like just another loud, flash-in-the-pan.


Sincerely,

John Gilmore

NYT: Katie "Denigrating", Wrights "Sympathetic", Autism Speaks "World-Class"

Today in a front page article on the problems at Autism Speaks and the division in the Wright family, the New York Times lives up to its reputation among autism parents as the most biased media outlet in autism reporting today.

As usual, there is much wrong with this article. Here are the highlights.

First, the NYT reports that Autism Speaks is a “Big Tent” organization. The Wright’s may have intended AS to be a “Big Tent” organization, but it is not. Proponents of vaccine safety and biomedical intervention are not welcomed in the tent any more than Katie is, now that she questions the AS line of research. Go ask the other organizations and they will tell you their stories.

[See below, NYT did not get any $ for this ad]
Next, I will start with the day before the article came out. Sunday June 17th Autism Speaks ran a full page ad in the NYT. I called the NYT and found that it costs between $120,000 and $150,000 to run such an ad in their paper. This was done the day before publishing this article that is heavily weighted toward the Wrights and AS, and against Katie and the multiple autism organizations and bloggers that support her position, which are apparently so unimportant that they do not even merit being named, much less their specific concerns even listed.



And here we are back at the same conflict of interest question that I have been harping on all week. How do we accept network news “expert doctors” claim that vaccines are not linked to autism, when those making the claims have ties to the pharmaceutical industry that will be libel if there is a link, and when the commercial immediately following the interview is a prescription drug ad? How do we take the NYT’s word for it when Bob and Suzanne gave them six figures while the interview process was taking place?

Seriously?

[Anon. commenter reports that, "The NYT ad you are talking about is an Ad Council public service announcement and the space to publish it would have been donated by the NYT. No AS $$$ would have been used for publishing this ad."

When I called the NYT this morning they quoted me $150,000 with 20% discount for non-profits and I specified autism.

Checking...]

[Just talked to a nice lady at the Ad Council who works on the AS campaign and she reports that the NYT got no money for the ad. The space was donated. That said, conflict of interest accusation withdrawn. Sorry for the bad information.]

[Hey! I want $150,000 worth of free ad space to tell parents out there that "Autism is Treatable", a much more important message than, "Autism Exists". I am calling the Ad Council back.]

[Generation Rescue reports that they paid $125,000 for their full page NYT ad in 2005]

Ms. Gross and Ms. Strong’s article claims that:

"The Wright family’s fight has captured the attention of the bloggers, who are now questioning everything from its office lease to how it makes grants. The charity rebutted the bloggers’ accusations of improprieties in interviews with The New York Times, which examined its IRS forms and read relevant sections to Gerald A. Rosenberg, former head of the New York State attorney general’s charities bureau. He said nothing he reviewed was untoward.”

As one of the bloggers who is questioning what AS is doing, I am none to satisfied with this “nothing to see here” dismissal of the accusations. Have the Wrights or AS made a public rebuttal of the questions we have raised somewhere, and I have just missed it? Or does the NYT just feel that we should take their word for it that a sufficient rebuttal has been made privately and be satisfied with that?

I am not satisfied with that. I want AS to answer publicly as to why they believe that Park Avenue office space, a $340,000 salary, not paying the ‘autism mom’ director of Autism Everyday for her work, and their “world-class” science board giving millions of dollars in grants to themselves rather than researching the interventions that are actually healing the child whose illness inspired the foundation in the first place (The Wright’s own grandson) does not qualify as ‘untoward’. *(see note at bottom)

I looked up ‘untoward’:

un•to•ward (ŭn-tôrd', -tōrd') adj.
1. Not favorable; unpropitious.
2. Troublesome; adverse: an untoward incident.
3. Hard to guide or control; unruly.
4. Improper; unseemly.
5. Archaic. Awkward.

That pretty much fits the picture perfectly.

And since when is a formal assistant attorney general the one to consult on what is moral and ethical? He is the guy to tell you if something is illegal, but we have not made charges of any law being broken. This entire paragraph was a strawman argument.

Finally, the authors discuss the hurt feelings at Autism Speaks.

Autism Speaks' 'feelings were hurt' by Katie when she said that it is time for the old guard to allow the research to shift to environmental causes and treatments? Again… Seriously??

Note that the response was not, "No they don't need to shift because the genetic course is resulting in assistance to those with autism and here is how..."

Note that the response was not, "Yes it is time to shift, and here is where we are going to make changes..." The answer was "We are offended at your remarks".

I have seen this happen in several places I will label it "The Offense Gambit". [It is probably a recognized logical fallacy with an actual name. If you know what it is, let me know.] It comes in handy when you run out of counter arguments.

Taking offense at comments is what Thomas Verstraeten did when he ran out of ways to defend his terrible epidemiological study against the legitimate critique that was offered.

Here is a little secret about us autism parents. People who try to use The Offense Gambit on autism parents need to understand that it does not work on us. When you get offended, here is what we are too polite to say at the moment:

We don’t care. Either you are guilty of the accusation, in which case we want you to own up to it and fix it so we can get back to helping out kids; or you are not guilty and we will happy accept a legitimate defense of the claim and apologize for our error and get back to helping out kids. Pick one or the other but don't waste our time being offended. We are in the fight of our lives.

Are we to believe that it is reasonable NOT to change the direction of research because even suggesting it will hurt the feelings of wealthy and powerful board members and researchers? Seriously?

I am a family therapist, so I am about the last person who thinks that hurt feelings should be ignored; especially in a broken family. Feelings are important. But there is a time and a place for dealing with feelings. That place is not in a discussion determining where millions of dollars in research funding for a disastrous childhood epidemic will go.

The reason for all the fractiousness and contention in the autism community is because, flat out, parents of autistic kids are sick of being lied to. We have seen the truth with our own eyes and all the lipstick in the world is not going to pretty up that “no vaccine link, no cure, must be genetics” pig enough for us to kiss it the way AS, the CDC and the NYT want us to.

Are you sick of the autism arguments? All of them? Are you ready for healing?
Then see part 2 of this piece coming up on The Rescue Post.

PS. And who the hell are "The Mercurys"? Sounds like a band. Am I one of "The Mercurys"? Is this an NYT invention, because I have never heard it before? Neither had Dan Olmsted when it was brought up to him on C-SPAN today.

*NOTE* Last week Dr. Kreigsman testified at the hearings about something good and constructive that AS did for our kids in regards to advancing the medical communities understanding of our kids GI problems and establishing a consensus on how they should be treated. This is huge and wonderful. This is a great example of the kind of good that AS could do if they wanted to. I am all for giving credit where credit is due and will be writing a full piece on this.

Autism Debate Strains a Family and Its Charity

The New York Times
By JANE GROSS and STEPHANIE STROM
Published: June 18, 2007

A year after their grandson Christian received a diagnosis of autism in 2004, Bob Wright, then chairman of NBC/Universal, and his wife, Suzanne, founded Autism Speaks, a mega-charity dedicated to curing the dreaded neurological disorder that affects one of every 150 children in America today.

The Wrights’ venture was also an effort to end the internecine warfare in the world of autism — where some are convinced that the disorder is genetic and best treated with intensive therapy, and others blame preservatives in vaccinations and swear by supplements and diet to cleanse the body of heavy metals.

With its high-powered board, world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon, the charity was a powerful voice, especially in Washington. It also made strides toward its goal of unity by merging with three existing autism organizations and raising millions of dollars for research into all potential causes and treatments. The Wrights call it the “big tent” approach.

But now the fissures in the autism community have made their way into the Wright family, where father and daughter are not speaking after a public battle over themes familiar to thousands of families with autistic children.

The Wrights’ daughter, Katie, the mother of Christian, says her parents have not given enough support to the people who believe, as she does, that the environment — specifically a synthetic mercury preservative in vaccines — is to blame. No major scientific studies have linked pediatric vaccination and autism, but many parents and their advocates persist, and a federal “vaccine court” is now reviewing nearly 4,000 such claims.

The Wright feud has played out in cyberspace and spilled into Autism Speaks, where those who disagree with Katie Wright’s views worry that she is setting its agenda. And the family intent on healing a fractured community has instead opened its old wounds and is itself riven.

The rift began in April when Katie put herself squarely on the side of “The Mercurys,” as that faction is known, on Oprah Winfrey, where she described how her talkative toddler turned unresponsive and out-of-control after his vaccines and only improved with unconventional, and untested, remedies.

In a Web interview with David Kirby, author of the controversial book, “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic,” Ms. Wright lashed out at the “old guard” scientists and pioneering autism families. If the old-timers are unable to let go of “failed strategies,” she said, they should “step aside” and let a new generation “have a chance to do something different with this money” that her parents’ charity was dispensing. [link to the interview at FAIR Autism Media]

Complaints poured in from those who said Ms. Wright’s remarks were denigrating.

So, in early June, Bob and Suzanne Wright repudiated their daughter on the charity’s Web site. “Katie Wright is not a spokesperson” for the organization, the Wrights said in a brusque statement. Her “personal views differ from ours.” The Wrights also apologized to “valued volunteers” who had been disparaged. Told by friends how cold the rebuke sounded, Mrs. Wright belatedly added a line saying, “Katie is our daughter, and we love her very much.”

Ms. Wright called the statement a “character assassination.” She said she had not spoken to her father since. Ms. Wright continues to spend time with her mother, but said they had not discussed the situation.

“I totally respect if her feelings were hurt,” Mrs. Wright said. “But a lot of feelings were hurt. A lot.”

Now other autism families who hoped to put their differences aside are shouting at each other in cyberspace. “Our struggle is not and should not be against each other,” said Ilene Lainer, the mother of an autistic child and the executive director of the New York Center for Autism.

The big tent approach of Autism Speaks appealed to Mel Karmazin, chief executive of Sirius Radio and an early board member and contributor. “If you look at what projects Autism Speaks has funded, we are agnostic,” he said.

Mr. Karmazin, who also has an autistic grandson, added, “I never wanted to look my grandson in the eye and tell him I’m taking just one viewpoint or that I think it had to be genetic.”

Bob and Suzanne Wright are sympathetic to Katie’s plight, having witnessed Christian’s sudden regression and his many physical ailments, mostly gastrointestinal, which afflict many autistic children.

Some in the traditional scientific community worry that Autism Speaks has let Ms. Wright’s experience shape its agenda. She scoffs at the notion. Her parents, she said in a telephone interview, are “courageous” and “trying very hard,” but have been slow to explore alternative approaches.
Skip to next paragraph
Related
On Autism's Cause, It's Parents vs. Research (June 25, 2005)
Times Topics: Autism
Web Link
Autism Speaks Web Site

“You can say it and say it and say it,” she said. “Show me evidence that they’re actively researching vaccines.”

The Wright family’s fight has captured the attention of the bloggers, who are now questioning everything from its office lease to how it makes grants. The charity rebutted the bloggers’ accusations of improprieties in interviews with The New York Times, which examined its IRS forms and read relevant sections to Gerald A. Rosenberg, former head of the New York State attorney general’s charities bureau. He said nothing he reviewed was untoward.

The most distinctive aspect of Autism Speaks is its alliance with Autism Coalition for Research and Education, an advocacy group; the National Alliance for Autism Research, devoted to scientific research into potential genetic causes, with high standards for peer review; and Cure Autism Now, which has championed unconventional theories and therapies.

Which wing of the merged charity is ascendant? Some establishment scientists and parents now fear it is The Mercurys. They point to Cure Autism Now’s having more seats than the National Alliance does on the board of directors and the growing number of research projects that focus on environmental causes.

At a recent benefit gala, featuring Bill Cosby and Toni Braxton, some in the audience were surprised when Mr. Wright announced that all proceeds would go toward environmental research, which generally includes vaccines.

But a list of current research grants on the Autism Speaks Web site suggests that the Wrights, while walking a fine line, are leaning toward genetic theories.

From 2005 to 2007, the charity sponsored $11.5 million in grants for genetic research (compared with $5.9 million by all its partners between 1997 and 2004). It sponsored $4.4 million in environmental research (down from $6 million granted by the partners in the previous seven years). And many of the environmental studies explore what is known as the double-hit hypothesis: That the genes for autism may be activated in some children by exposure to mercury or other neuro-toxins.

Bob and Suzanne Wright say their two-year immersion into the world of autism has been an eye-opener, especially the heated arguments worthy of the Hatfields and McCoys.

Mrs. Wright is aware that the marriage of the Alliance and Cure Autism Now, for instance, could fall apart over opposing ideologies. “I’m not going to let it,” she said. “The truth will rise to the top.”

She is also aware that the rift in her own family needs repair: On Friday, her daughter posted a message on an autism Web site questioning their “personal denouncement of me.”

Yet Mrs. Wright is confident that “we’ll work our way through this.” Autism, she said “has done enough damage to my family. I’m not letting it do any more.”

Tired of Autism Yet?

Why yes David. Now that you mention it, I am tired of Autism! And fighting about it too! How might one escape all this unpleasantness?

Tired of Autism Yet?
by David Kirby
HuffPo

So many people are fighting so bitterly over the alleged link between vaccines and autism right now: On this Website, in Federal Court; and even within prominent American families -- as poignantly reported in today's New York Times.

But the grueling debate has actually united the fighting factions in at least one way: Most people (save for a handful of fringe parents who believe that autism is some altered state of being, worthy of celebration) are probably just plain tired of autism and the fight over its cause. They really want to settle this debate and move on.

I know I do.

The irony is that the multi-million-dollar court battles, the melodramatic headlines and the alarm over parents retreating from vaccinations are all so terribly unnecessary.

All we need do is conduct a thorough study of vaccinated and unvaccinated children, and see if there is any difference in their rates of autism spectrum disorders.

It could be a year or more before we get a decision on the first autism "test case" being heard in federal vaccine court right now, and years more before all 4,800 pending cases are settled. Meanwhile, the Gonzales Justice Department has earmarked millions in taxpayer dollars to fight the autism parents and their attorneys tooth-and-nail in these supposedly "non-adversarial" administrative proceedings. And regardless of the court rulings, neither side is going to back down, period.

But one good study by a respected team of investigators could probably settle this mess by Christmas.

Last year, Rep. Carolyn Maloney (D-NY) introduced the "Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act," to spend federal money on looking closely at the two groups of children.

The CDC, which has the conflicted task of boosting vaccination rates while also monitoring vaccine safety, dismissed the Maloney bill, saying it would be impossible to locate large enough numbers of unvaccinated American children needed for an accurate comparison.

But that simply isn't true. Dan Olmsted, author of the "Age of Autism" column at UPI, wrote last year about a large medical group in the Chicago suburbs called Homefirst Health Services, which is largely geared toward parents who homeschool their kids, and who tend not to vaccinate.

Dr. Mayer Eisenstien, who founded the practice in 1973, told Olmsted that, of the 35,000 children given care at Homefirst, very few have autism, and they were all vaccinated. "I don't think we have a single case of autism in children delivered by us who never received vaccines," he said. (Cases of childhood diabetes and asthma were also reportedly very low).

Other possible unvaccinated populations include children of chiropractors, Scientologists Christian Scientists and the Amish -- though some protest that this last group might be protected by insular genes or a pre-industrial lifestyle, without noting the obvious benefit that such a groundbreaking discovery would confer.

Critics of the study idea, who insist that vaccines have been 100-percent exonerated, riducle the Maloney bill as a redundant, monumental waste of time and money.

Even so, their position is a bit hard to understand. No matter what happens in Vaccine Court, (which many say is the wrong venue for such a fight anyway), this tired old debate will drag on for years, God help us. (For an excellent explanation of why, please read last Friday's blog by CBS News Capitol Hill Correspondent Sharyl Attkisson).

But a study of vaccinated-vs-unvaccinated kids would, in its poweful, elegant simplicity, compel at least one side to finally fold up shop and go away.

When doing autism surveilance studies, The CDC usually looks at 8-year-olds, to ensure that all late-diagnosed kids are counted. It seems reasonable, then, to randomly select 1,000 (or 5,000, or whatever number is needed for statistical significance) unvaccinated 8-year-olds, and compare them to vaccinated children of the same age (born in 1999, by the way, at the height of mercury exposures from vaccines).

Will autism rates be exactly the same between the two groups, as the CDC and others would predict (especially among boys, who are four times more likely than girls to have the disorder)?

It's perfectly reasonable to assume that they will(thus disproving Olmsted's intriguing but admittedly layperson's report out of Chicago).

And just think what a joyous moment that would be. I for one would be shouting from the rooftops. I take no joy in pointing to vaccines as a possible contributor to autism, and I would be only too happy to declare the hypothesis dead in the water, and move on with my (admittedly autism-free) life with friends and family.

Many scientists will say that other large population studies of vaccines failed to show a link to autism, but none of those studies were the same as this proposed investigation, which would look at all vaccines given to children who were all born in the United States, in the same year, and even maybe in the same region.

Such a massive work of epidemiology could run a million dollars or more. But that is just a fraction of what is being spent, by us via our government, right now defending vaccines in federal court.

If the drug companies, and the Bush Administration, and Congress, and the public health establishment, are so very confident in the total safety of all childhood vaccines (and their components, including merucry), then why would they reasonalby object to such a study?

If the results showed that vaccinated children were, all around, more healthy and robust than unvaccinated kids - that would pretty much kill all lawsuits right there, send waves of reassurance to billions of parents around the world, and make people like me shut up and go away.

I would, blissfully, not write about autism and vaccines again. (I have a new book deal to occupy me, about corporate vs. environmental health, which my publisher St. Martin's Press will announce shortly. I am not an autism activist, and this is not my crusade).

And if the federal government or the drug companies simply won't cough up the finances needed to fund such a feud-settling study, then maybe when Bob Wright begins speaking with his daughter Katie again, she can convince him to propose that the mega-charity write a mega-check.
----------
PS: You can view a 30-minute highlight of my interview with Katie Wright, sponsored by the Foundation for Autism Information and Research (FAIR) by clicking here

Injecting Sense into Autism Speaks

My Bestest Blogging Buddy, Wade Rankin at Injecting Sense has posted the first installment in a three part series of a detailed examination of Autism Speaks.

Go there now.

I mean it. Get out of here.

Statement on Autism Speaks from Katie Wright

A Statement from NAA Board Member Katie Wright

Several weeks ago I did an interview with David Kirby, which was subsequently made available to F.A.I.R. Autism Media. During this interview, I made a few comments which upset some members of NAAR as well as some parents of older autistic children.

It was never my intent to upset parents. I am terribly sorry if statements reflecting my frustration with the pace and scope of autism research offended the pioneering and hard-working NAAR parents and volunteers. Their contribution to this cause has been both tremendous and courageous. When I stated that autism has reached catastrophic numbers and it is time to let go of resistance to environmental research, I was speaking of scientists at the CDC, NIH and elsewhere, who have discounted and obfuscated the autism/ environment connection for far too long.

Despite receiving high quality early intervention, my son lost every word, every skill he ever had within a year of his diagnosis. Christian lived in constant pain for the following two years with a destroyed immune system and endured bouts of severe colitis, pnuemonia, staph, strep and cellulitis, while hardly eating, barely sleeping, only screaming. Tens of thousands of parents are living this nightmare along with me. We are understandably angry at the glacial pace and narrow focus of autism research.

I, like most other parents of autistic children, want to see far greater resources directed towards helping the children and families living with autism TODAY. We immediately need research and assistance on providing therapeutic services and bio-medical interventions. While research into the role of genetics in the development of autism should be continued, this should not occur at the expense of crucial research into environmental factors that are so obviously triggering this epidemic. The first priority must be investigating therapies and treatment for improving the outcomes for individuals living with autism today.

Finally, I was saddened by the statement issued by Autism Speaks, featured so prominently on its website, which so vehemently disassociated itself from me. Repeatedly, throughout the interview, I said my opinions were my own and did not represent those of Autism Speaks. I do not understand why such a personal denouncement of me was necessary. To be clear, I have nothing but admiration and appreciation for what my parents, Bob and Suzanne Wright, have achieved and are trying to do to in promoting the cause of environmental research. It is my greatest hope that Autism Speaks as well as the scientific and medical community will fulfill their promises and commit themselves to the environmental, biomedical and therapeutic research so urgently needed. It is long overdue.

Sigh...

Autism walk in Purchase to draw thousands for research, awareness
June 10, 2007

Thousands of walkers - including individuals with autism, their families and friends - are gathering this morning to raise money for autism research and to increase awareness.

The 6th annual Westchester/Fairfield Walk Now for Autism began at 9:30am at Manhattanville College in Purchase.

All proceeds from the event benefit Autism Speaks, the nation's leading autism advocacy organization.

According to organizers, last year's Westchester/Fairfield walk event drew more than 9,000 walkers and raised nearly $1 million.

Questioning The Plan of Autism Speaks

Since Autism Speaks is coming under such close examination, I thought I would bring to you the keen observation of an anonymous poster on the Evidence of Harm List.

He is the one who wrote the AS 990 report.

The question asked here is simple, "what is the plan of Autism Speaks".

They are raising tons of cash. They are spending none of it on treating children. They are spending none of it on helping adults. Autistic adults are not even allowed to speak at their events. They are drying up all the donations for the smaller groups that are treating and providing services. They are spending millions on infrastructure.

AS has the dubious distinction of being so universally disliked in the autism community that they bring together two groups that are butting heads constantly, the biomed parents trying to cure their children of ASD and the Neurodiversity movement that says ASD is an alternate and equal cognition and should not be cured. The opposing clans have seem to only two things in common, they love people with autism and they hate Autism Speaks.

With all this going on, we need to answer this question right quick.

The question is answered on the AS web site by:

Dr. Gary Goldstein
President, Kennedy Krieger Institute
Clinical Scientific Advisor, Autism Speaks

In an article entitled:

Dr. Gary Goldstein discusses the current focus of autism research and the urgent need to conduct long-range clinical trials.

("Urgent" need for "long-range" trials? Is that like "hurry up and wait"?)

Analysis of Dr. Goldstein's comments:

So what is AS's real plan?

Its not treatment.
Its not working with other autism groups.
Its not providing services.
what is going on?

The answer is found on their web site. Gary Goldstein of John Hopkins is the Medical Director is the real power and the gatekeeper the money. He gives a lot of it to himself and his friends. The plan is ONE BILLION DOLLARS over the next FEW YEARS.

Now does everyone understand what is going on. The research institutions have their own foundation.

So what are Gary's plans? - read about them below quoted from the AS web site.

SUMMARY: He says that TREATMENT will only begin AFTER the research is completed - hundreds of millions of dollars and after years and years.

From Gary Goldstein - Medical Director of Autism Speaks:

"But there needs to be a huge national campaign directed toward the general public.

Hundreds of millions of dollars each year. This is what Autism Speaks is capable of doing. They have the seed money to launch a general campaign. Again, this requires a lot of money-you need advertising, media, public relations.

As I said before, getting these clinical trials going is incredibly expensive. But these clinical trials are imperative-only then will we be able to compare results and develop appropriate treatments.

Another effect will be the ability to get money from drug companies."

His new $3 million autism database is to have parents sign up for NON TREATMENT research. Unwittingly thousands of families with a child with autism are signing up!!! Most of them believe they are going to have treatment.

NOW DOES IT MAKE SENSE?

He then goes on to discuss the human trials that Kennedy Kreiger, Dr. Goldstein's institution, has done on children in the past:

Human Trials - is this a good idea? Is it SAFE? Will it help real children?

A national magazine recently wrote a article summarizing HOW human trials are done by John Hopkins. An exerpt is as follows:
http://www.google.com/search?hl=en&safe=off&q=john+hopkins+penthouse+lead&btnG=Search

"What Hughes (a mother of a lead toxic boy being studied) - and more than a hundred other low-income, predominantly African- American families from Baltimore who were also recruited - didn't know was that the kids would be used as guinea pigs in study so shocking that the Maryland Court of Appeals later compared it to both Nazi experiments at Buchenwald and the notorious 40-year-long Tuskegee study in which poor lack men were allowed to die of untreated syphilis. In August 2001 the court accused Kennedy Kreiger (John Hopkins) of deliberately encouraging inner-city landlords to rent lead-contaminated buildings to families with children under age four"the group most vulnerable to lead poisoning, since little kids often put paint chips or house dust in their mouths. Yet the consent form never mentioned the terrible risks of this toxin: stunted growth, nervous-system damage, impaired hearing, mental retardation, even death."

I could not find the link to that article, but I found this quote in a NYT article:

"Dr, Gary Goldstein, the chief executive of Kennedy Krieger, defended the study and the institute's record in treating and preventing lead poisoning in the poor neighborhoods of Baltimore."

Read the whole thing.

The NYT article and several others the unethical study can be found here.

[UPDATE: One commenter understood this section to mean that I was implying that AS was involved with studies that ignored safety guidelines. I want to be sure that no one else gets that impression. AS is IN NO WAY implicated in the Baltimore lead study and did not even exist at the time. My concern is that KKI who did the study, is getting the bulk of AS's money and Dr. Goldstein, who defended the lead study, heads the AS board and is dispensing the money to his own institution, KKI.]

So....

We have hundreds of thousands of sick children and adults who require treatment and services, each one of which will require an estimated $15 million dollars worth of care over their lifetime. The autism rate is estimated to be growing at %12 per year and now is 1 in 150 according to the CDC.

And the Autism Speaks solution seems to be this:

Vacuum up all available donations, skim a healthy chunk off the top for lavish salaries and expenses, hand the rest to Gary Goldberg (defender of unethical studies on poor children) so that he can hand it to his own institution to build a three million dollar database and do long term genetic studies that not improve the life quality of even one of the hundreds of thousands struggling with autism, but which will either fail to find the gene, wasting millions, or succeed in finding a gene (which they now believe to actually be a confluence of hundreds of genes), giving people the option of "curing" autism by killing their unborn child who MIGHT develop autism eventually.

Autism Speaks has the power to do immense good. Right now they are doing immense harm.

I really hope they are listening.

I know I have been downright brutal to AS this week, but I think the criticism is fair and deserves a response by AS.

UPDATE: Be sure to read the comments section as I have added some information about AS spending decisions.

Monica Bice: Why I Hate Autism Speaks

To say there has been a negative reaction in the autism community to the revelations concerning Autism Speaks over the last two weeks is putting it mildly. Both parents and adults with autism have become more openly hostile to the group.

Monica Bice, autism mom/activist (aren't we all) had this to say yesterday after reading the Autism Speaks 990 Report.

First and foremost, I was at a critical period in Jade's diagnosis when I saw "autism everyday". We were about 6 mos into the diagnosis. I watched that, as if I wasn't depressed enough already. I felt as if Jade's future was hopeless, especially since we could not afford ANY therapy but what Medicaid covers (which is not much at all some ST and OT), and could barely afford biomed.

I cried for days. They perpetuate depression and hopelessness at a time when parents need to be ENCOURAGED so that they may be happily functioning in their role as a parent of a child with an ASD. I wanna scream when I think of how I sat for days crying, when I should have been playing with Jade.

WTF was Singer thinking? [Alison Singer, AS Executive V.P. Communications and Awareness and autism mom interviewed on "Autism Every Day", told the interviewer that she considered killing her child and herself at one point. Sadly, homicidal/suicidal ideation in caregivers is a reality for some, and is an issue that should be discussed and tackled, but Alison did so in the presence of her daughter and has been harshly criticized for it. -ed] As if Jodi could not hear nor understand what she was saying? That poor little girl. I suppose if I viewed Jade that way, and spoke of killing her in front of her, she would not have made the gains she has.

And she gets paid by them, I think I am gonna be sick.

In contacting autism speaks through the number on their website, their phone reps know nothing about autism but what is on their website, which isn't much.

I have yet to meet anyone from AS that has a child, or family member with an asd.

Espeaks is a joke, more self promoting garbage that doesn't help any parents.

Last year, I was told our regional chapter would start funding local programs. I just got the same story last month, 'next year they will'. I doubt it.

Last year, another mom in my group and I brought our kids and met with Congressman Bilirakis, and convinced him to co-sign the Combating Autism Act. AS took credit for this on their website.

As I was to be part of the committee for the AS first Tampa walk last fall, which coincided with Donna Williams visit to the bay area, I asked Donna if she would take part in the walk, perhaps speak. I was so embarrassed when I had to relay the news to Donna that AS informed me that the walk was not "the right venue" for her to speak at.

WTF? a person with autism SPEAKING (for free I might add) at an autism SPEAKS event, is not the right venue?

Do they want us to have no hope?

I am also very embarrassed that my team raised approx. $20k for this walk. Yet, in April, my entire county could only raise about $8k for our public schools annual autism walk, to fund their autism program.

The schools need the money before AS does. I guess without the "brand name" and marketing power, we were not able to do more. I mean, we couldn't afford fancy pre-walk dinners and events, or give away thousands of dumb ass magnets. Besides, most companies that I contacted, had already given to the AS walk, and were not able to give more.

Lastly, when I asked if AS could help me with state legislation to pass two bills my senator and I worked on, I was told they currently do not lobby at the state level. uh, why the hell not? One to create a program to make Project Lifesaver available statewide and another to create a program to use scholarship money to fund an early intervention program, as Florida has none.

Sadly, both bills died in committee, as I don't get a dime for what I do with AWARE and can't do as much for my community as I would like, nor do I know what the hell I am doing regarding legislature. Hell, I skipped my US govt class (it coincided with my sleep), and have had to learn the ropes on my own. If AS had helped, I am certain these bills would have gone through.

We could have used their help to convince legislature not to make the severe cuts to Florida's developmental disabilities funding.

I mean, why would they want to help people with ASD?

As far as I can tell, they simply want to eliminate them.

I Take Back Every Nice Thing I Have Ever Said About Autism Speaks

I read this today and it just made me sick. I don't even have the words to comment on it.

I am a professional that has reviewed many non profit organization's IRS Form 990s. Autism Speaks Form 990 raises serious red flags. Serious. This is all from the official filing for 2006.

1. Three members of the Board of Directors received $2.5 million for their own organizations.

2. The President Mark Roithmayr, just received a 5 year contract for about $2,000,000 including bonuses with no prior background with autism.

3. The grants are primarily going to those representing institutions that are reviewing the grants. There is no indication that these conflicts are independently reviewed

4. The location of this small and new foundation is in very expensive downtown New York facilities (2 Park Avenue) rented for $200,000 by the institution that is run by the Chairman of Autism Speaks.

5. A expense of a Private Jet plane for $57,000 was noted. This is very unusual for a new non profit groups.

6. The head of the scientific review received the majority of the funds for 2005 for his institution for a data base - almost $3 million

Since the funding is now from the public - and the advertising and promotion tugs at the publics heart strings with images of families in need - the funds collected MUST be about those it raises the money for.

The following are all taken from the Form 990 filing

Web Site $830,000
Software for the computer $514,000
Lawyers $440,000
Computers $337,000
Public relations $285,000
Office annual rent $200,000
HR consultant $110,000
Editorial Consultant $76,000
Private Jet Plane for someone that entertained $57,000


Mark Roithmayr* $360,000
Peter Bell [$240,000?]
Alison Singer $168,000
Mr Ringall $150,000
Andy Shik $110,000

Remember all the above also gets significant fringe benefits that
probably add.

Mark Roithmayr also can get $50,000 more with a bonus a year benefits

Here is the AS 2005 990. Here is the 2006 990.

Further discussions on AS allocation of funds, choices and ethics can be found here, here and here.

Read all post on Autism Speaks here.

Bob and Suzanne Hurt Another Autism Family

Note: Anyone wanting to send supportive emails to Katie Wright can do so through the National Autism Association at naa@nationalautism.org

So last week they hurt their own daughter, this week they are hurting another autism family.

I don't believe that Autism Speaks are the bad guys. I believe that they are the confused guys.

The world of autism is absolutely no place for the cut throat business tactics of corporate America. We are all struggling on a daily basis and our families tip over easily, so you just don't screw with each other.

I feel for the Wright family right now, I really do. They come from a place of privilege, where only the strong survive, and they really don't understand the struggle that most families are living under. I really believe that they want to serve kids and families, and that they think they are serving them. But you can't screw one or two families for the greater good of "Autism Speaks". You just can't. It shows that your priorities are not in order.

This is a crucial time for them. Things are coming to a head for Bob and Suzanne. They are either going to soften and become teachable, learn from the families that they started AS to serve, and really begin putting their millions to work to actually serve them...

OR

...they are going to become hard to the message that they need to hear, that autism is preventable and treatable, and join their NAAR friends in their descent into irrelevance as people wise up to the party line as more and more kids recover.

I sincerely hope it is the former. I hope so for their sakes, for Katie and Christian's sakes, and for Chandler's sake.

Their struggle to stay blind to the truth that children are regressing into Autism after vaccination and improving under the DAN protocol hurts my son. The longer they hold out, the longer it will take to get Chandler's treatment covered by insurance. The longer it will take for pediatricians to get the message that this treatment is out there and that it works. The longer it will take for the availability of treatment to go up and the costs to come down.

If the corporate model worked for curing Autism, NAAR and CAN would have cured it already. They raised millions every year and did not get one inch closer to a cure. They have not produced one medical intervention for my son.

Almost all of the interventions that are recovering and even curing autistic kids have come out of The Autism Research Institute, which for a long time worked out of Bernie's house and then a storefront strip mall. They didn't give a crap about what anyone thought of them, they certainly have not poured millions into web sites and office space like AS has, they just spent what little money they had on finding direct interventions to help children now. And it worked!!

Imagine what ARI could do with AS's NYC office space budget.

Here is the Wright's new problem. They are jacking the director of "Autism Every Day", who is the mother of an autistic child:

Celebrity Autism Group in Civil War
By Roger Friedman
Fox News

Autism Speaks, the celebrity group founded by former NBC chairman Bob Wright and his wife Suzanne, is in the middle of a family feud and a dispute over whether they have swiped an award-winning film from its director.

The charity is unusual because in a short time it has raised millions of dollars and called upon such celebrity friends of the Wrights like Jerry Seinfeld and Paul Simon.

The Wrights created Autism Speaks just three years ago when their grandson, Christian, was diagnosed with the malady. But since then they have had such a severe falling out with their daughter Katie, Christian's mother, that the Internet is now buzzing with a new scandal.

This week, the Wrights posted a press release on the Autism Speaks Web site in effect disowning daughter Katie's comments in a video interview she gave to a critic of Autism Speaks. Katie Wright also appeared on the "Oprah" show in April, where she talked about the split in philosophies with her parents.

Even the press release issued by the Wrights itself caused a buzz because it initially read: "Katie Wright is not a spokesperson for Autism Speaks. Our daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. ... Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks." Ouch!

Only later, when the statement seemed too harsh, the Wrights changed the release, adding of Katie: "She is our daughter and we love her very much."

But the damage was done.

With the scandal quickly overtaking the cure of autism as a subject, comes a new dilemma. Filmmaker Lauren Thierry is accusing the Wrights of appropriating her award-winning film "Autism Every Day" for their own purposes. Thierry made the film, which was shown at Sundance this year and is in this month's Nantucket Film Festival, after the Wrights saw an earlier, shorter version they liked.

Thierry says Suzanne Wright then commissioned a feature version, and told her "money is no object." While the Wrights paid all the film's costs, they never came to terms with Thierry, the director says. They systematically cut her out of the promotion of the film, she says, when the Wrights took it on the media rounds.

This was odd considering Thierry and husband Jim Watkins, an anchorman for Channel 11 in New York, have a good PR hook of their own: They are parents of an autistic son.

Thierry wants to be paid for making "Autism Every Day," but when the Wrights sent her a contract, with a blank space for the fee, it also included a proviso that Thierry could not do any publicity for it. Thierry countered by sending a bill for $104,000 including $64,000 for labor and $40,000 for intellectual property. For that amount she was willing to allow the Wrights buy her out. Ironically, Thierry had already told the Wrights she would be splitting her fee with an autism school in New York.

The Wrights countered, through their executive, Alison Singer, that Thierry was paid $30,000 and that they have compensated her in full. But Singer can't produce any evidence of this.

"Alison Singer sent me a check for $30,000. I never cashed it and sent it back. There was never an agreement for a fee," Thierry said.

Singer, who at first told me about paying Thierry, is now playing her cards close to the vest.

"Autism Speaks feels it inappropriate to publicly disclose its details," Singer said.

The chaos surrounding Autism Speaks is not surprising. In short order the new group has shut down or subsumed a number of other, older organizations that used to do the same work, but without the resources of the Wrights. Sources at the long standing Nordoff-Robbins Foundation, for example, have complained recently that their fundraising sources have dried up since Autism Speaks came on the scene.

In her video interview, Katie Wright criticizes not only Autism Speaks but also a group they took over, the National Alliance for Autism Research, for which has organized marches and vigils for 20 years. Katie Wright now believes that vaccinations and the environment may be responsible for autism — a controversial theory among others who say it is a genetic disorder.

Whichever side turns out to be correct, the split in the Wright family cannot be good for the cause of autism.

"The whole reason for Autism Speaks was because of Christian," one critic said. "And now the Wrights are dissing his mother, their own daughter."

Singer says none of that is true.

"The Wrights started Autism Speaks for all families, not just their own," she said.

She agreed, however, that the couple would not have known about autism at all had their own family not become involved in it.

Meanwhile, Thierry says she remains unpaid and that, despite the Wrights' assertions, she is paying her own expenses. When she goes to the Nantucket Film Festival later this month, it's the festival that's picking up her travel and accommodation expenses.

UPDATE:

Lisa Jo at About.com comments.

NAA and the Wrights

Yesterday the National Autism Association openly challenged Bob and Suzanne Wright to account for their statement about Katie.

Today NAA sent out a notice of their conference in the fall.

Suzanne Wright is listed as one of the speakers.

I am guessing that things are not as chilly between Bob and Suzanne and the environmental/biomed camp as they seem to be on the surface.

There is not a chance that Suzanne would walk into a room full of NAA members and extol the virtues of genetic research over environmental. What would be the point?

Either way, my hat is off to the woman. She is going to be pelted with questions about what is going on at Autism Speaks. I really respect her for coming.

I will be at this conference if only to hear from Suzanne Wright.