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.
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,
UPDATE: A frank reply from John Gilmore of A-CHAMP and Autism United:
Dear Mr. Shestak,