By Katie Wright
The Serenity Prayer isn’t just for AA meetings anymore. I find it to be a useful calming exercise while listening to an Inter Agency Autism Committee Meeting. It helps me not want to jump off a bridge.
Almost no IACC members (who were not compelled by law) attended, or apparently listened to the first Congressional Government Accountability meeting on autism since 2001. Apparently Dr. Insel’s policy to ignore the outside world and all public input continues in earnest. At the hearing Congressmen and women spoke, at great length, about their frustration over NIH and CDC failures, specifically the absence of vaccine safety research on our immunization schedule and the association between vaccination and autistic regression. Congressperson after congressperson spoke with incomprehension over the fact we have the world’s most aggressive, infant immunization schedule yet among the sickest children in the industrialized world.
An amazing thing happens in a democracy: commonsense has a voice. Good questions are actually asked and bureaucrats, like Dr. Coleen Boyle and Dr. Alan Guttmacher, are required to answer! This is how life should be.
OK so let’s review, Congress held a full day hearing on autism research, featuring incredible bipartisan leadership, noteworthy in and of itself! Meanwhile in the hermetically sealed world of Dr. Insel and most IACC members there has been NO news, no discussion of this historic hearing whatsoever. Lyn Redwood attempted to insert discussion of new vaccine studies as discussed in this ground breaking public congressional hearing, into the Strategic Plan. However, Insel refused to amend the banal 5 year old, 3-sentence commentary on the state of autism and vaccine science.
The NIH wanted public IACC members who were as opposed to vaccine research as humanly possible.
I am still unclear whom Matt Carey represents and to what capacity he serves the autism community? He is a blogger yes, but for a British site? Does he provide services to ASD families? Does he fund research or educational conferences? Does he train First Responders to work with ASD families? Four super HF Asperger's or HF autism men were appointed to IACC. This is odd considering that these brilliant and accomplished men represent about 2% of the ASD community. Indeed, given the new autism guidelines in the DSM, I doubt any of them would be labeled as “autistic” today.
Obviously Insel and company wanted public IACC members who toe the “autism is genetic and not so bad,” and “autism is just a lifestyle difference” and “autism is never the result of over vaccination” lines. But the strategy is so clumsy and obvious. Naturally all members of the high functioning ASD community argued, sometimes vociferously, against research into vaccine induced autistic regression.
The result of, in essence, of this ballot box stuffing in regards to IACC appointees, this has been the least representative and the least productive IACC year in history. Last year’s Strategic Plan and 2010’s Strategic Plan were far superior.
Sadly, Carey, parent and autism blogger, and Scott Michael Robertson, Self Advocate and Co-Founder and Vice Chair of Development, Autistic Self Advocacy Network (ASAN) spent much of their time and energy trying to block the environmental research initiatives important to the other 98% of the autism community. Aren’t we all better off advocating for our own issues rather than expending all that energy trying to block issues so important to others? I do not understand why Carey is positively obsessed with the vaccine issue. Why not spend that time advocating against the use of restraints, anti-psychotics and electro shock therapy. These issues are so critically important and relevant to the here and now for the adult and young adult autism population.
Listen if there was a big discussion about important issues pertaining to the Asperger's community I would just butt out. The last thing I would do is present myself as an expert on a subject on which I have no expertise.
Yet that is exactly what Matt Carey did with Idil Abdull, Lyn Redwood and Jan Crandy. Idil spoke about the need to study environmental factors, including immunizations. We need to find out what is behind the explosion autism among the Somali community in Minneapolis. Immediately Carey challenged Idil stating that she has no way of know that the autism rate in Somalia is not the same as in Minneapolis. Robertson followed up saying that due to cultural differences Idil doesn’t know the real extent of autism in Somalia. Oh for Pete’s sake, I remember thinking, "This woman is from Somalia and a leader in the Minneapolis Somali community and the mother of a child with autism." I think she qualifies as someone suitably sensitive to the “cultural issues” of other Somalis! Idil argued that autism is a new disease. Neither she nor any members of her community had even heard or saw those with a disease that makes children stop speaking and start head striking. You just don’t miss these children, as Idil stated.
Additionally IACC members Jan Crandy and Lyn Redwood are ASD mothers. Many of the ASD families they represent witnessed post multi vaccination regression firsthand. The NIH has spent tens of millions on eye gazing research yet almost nothing on independent vaccine safety research. The general public, not just autism families, wants independent vaccine safety research not conducted by criminals (Thorsen) and their associates or those with financial or professional ties to the vaccine industry. There is a reason why vaccine safety is the number 1 concern of all new American parents.
Why this need to undercut the experiences and concerns of these autism mothers and hundreds of thousands of literally voiceless children? Do Carey and Robertson believe families are just making up these horrendous adverse vaccination response stories? It sounds like they do. I will never understand this need to negate others’ experiences.
Other public IACC members were more respectful of others’ experiences but not very helpful. I really wish all IACC members watched last year’s meetings and read the past 2 Strategic Plans. There was too much redundant discussion this year and too little insight. I was rooting for Dr. Batra when the committee was nominating researcher experts to aid with the plan.
Dr. Batra pushed for contributors with new ideas, but she had few specifics. One needs to come to IACC prepared, knowledgeable about the specific nominees. In the treatment discussion the same early intervention specialists were nominated by the same federal members (Dr. Boyle, Dr. Lawson) for the 10th year in a row. Then Batra made a great argument for the inclusion a sensory integration expert/ OT on the treatment team. Anshu emphasized that parents are impatient for treatment research that encompasses issues beyond early intervention and ABA. Terrific idea I thought! But nothing happened because Dr. Batra did not have the name anyone to nominate. So frustrating.
Too much time was wasted by IACC members discussing, as if for the first time, the issues Wendy Fournier and Lori McIlwain brought forward 2 years ago. It remains impossible to understand why Wendy Fournier, the initiator of the wandering program and the president of the national research and service organization, the National Autism Association was not given an IACC seat. Wendy has regularly followed and contributed to IACC for the past 10 years. Yet so few IACC apparently even read past plans or public comments. The IACC office maintains meticulous records of past IACC committees, public comments and Strategic Plans. It is all there! Please read it!
Thank you to Jan Crandy for advocating for research on medical conditions. I wish more IACC members shared your sense of urgency for GI treatment research. Thank you to Geri Dawson for successfully advocating for innovator contributors. Thank you to Lyn Redwood for being one of the few brave voices for environmental science and vaccine safety.
Katie Wright is Contributing Editor for Age of Autism.