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

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?

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.

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