Under the Wire to the IACC · 2008-09-30 14:00

September 30, 2008

To the Members of the Interagency Autism Coordinating Committee:

I am mother to two young adults, one diagnosed with Asperger Syndrome, and have other family members with autistic spectrum diagnoses and traits. I am writing to offer several observations about the Committee’s August 15, 2008 draft Strategic Plan for Autism Spectrum Disorder Research.

The draft Strategic Plan cites a “sense of urgency” as the first “core value” underlying the Committee’s work. I fully support the development and implementation of effective, compassionate and respectful responses to the needs of autistic individuals and their families. However, I would caution the Committee to avoid allowing anyone’s “sense of urgency” to justify abandoning scientific rigor or exposing autism research subjects to greater than minimal risk in the absence of any evidence of potential for direct benefit to them. This is especially important given the Committee’s support for the development of “clinical trials that assess the safety and efficacy of widely used interventions that have not been rigorously studied for use in ASD populations.” Although some of these “widely used interventions” such as the gluten-free casein-free diet may be relatively innocuous, others such as extended administration of chelation drugs are associated with significant and well-documented risks. Certain entrepreneurs may have successfully marketed autism treatments that are not well-supported by scientific evidence and are premised on speculative hypotheses of autism causation, and may have persuaded parents of autistic children to consent to invasive, potentially traumatic diagnostic testing, blood draws, injections and intravenous infusions. However, the risks of such treatments and procedures should not be downplayed, or the strength of supporting evidence overplayed, in any autism research that is federally supported.

Although the draft Strategic Plan states that “numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury preservative thimerosal,” vaccines subsequently and inexplicably appear first in a list of possible environmental factors deserving further monitoring. The only conceivable reason for the inclusion of this recommendation is to placate plaintiffs’ advocates such as Mark Blaxill and IACC member Lyn Redwood, whose organization SafeMinds exists to support and publicize only those studies that validate their pre-existing conclusions about autism causation, and to influence the outcome of vaccine-injury litigation. The IACC must focus public resources on autism research that is rationally justified, rather than spend tax dollars in a futile attempt to mollify activists who alternate their demands for “more science” with expressions of suspicion against scientists whose research is supported by the federal government or the pharmaceutical industry, and condemnation and ridicule of scientists and studies with conclusions different from their own.

Please resist the efforts of vaccine-injury plaintiffs’ advocates to define themselves as representatives of “the autism community.” There are many people affected by autism spectrum conditions, many different theories of causation, and many different perspectives on appropriate ways to address the medical, cognitive, educational and social challenges faced by people on the autistic spectrum. There is no unified “autism community.” The IACC should therefore refrain from using the phrase “autism community” in its publications.

Sincerely,

Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring
http://www.neurodiversity.com

Comments


  1. Excellent contribution, Kathy! Puts everything in proper perspective and recognises the different views held across the (dare I say it) Autism community. I’ve always said that taking in different views is important – if anything to decipher what’s good and what’s pure BS.

    — Timelord    2008-09-30 18:42    #