I have previously written about the importance of the IACC and in a 2009 blog comment expressly thanked the IACC for its role in advancing autism research. With the passage of 3 years though I have become a less enthusiastic IACC booster. Both the Canary Party and the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) have called for an accounting from the IACC and its leadership. I support their calls for accountability.
Autism advocate representatives on the committee have been anti-cure ideologues while autistic persons seeking cure like Jonathan Mitchell are ignored in every sense of the word. The IACC, despite paying lip service to gene environment interaction has for the most part continued to subscribe to the "it's gotta be genetic" belief system for explaining what causes autism.
During the IACC existence, and during the 14 years since my son's autistic disorder diagnosis, autism diagnosis rates have literally exploded. Yet the IACC makes no serious effort to address this burgeoning rate and allows the public to believe the tired, repetitive, and unsubstantiated excuses that every single reported increase in autism is due entirely to mid 90's diagnostic definition changes, enhanced awareness and diagnostic substitution motivated by parental desire to obtain all those wonderful autism services that apparently exist in every school district in the US.
I am not anti-IACC but I do believe there should be some accounting provided. As the Autism Gadfly Jonathan Mitchell has said non-Americans, including Canadians like me, have no right to DEMAND anything from an American taxpayer funded institution but the IACC has an important role to play in autism research and, like many US institutions, has a world wide impact. As a Canadian autism dad I ask the IACC to provide a real world accounting of its efforts. Are we any closer to understanding autism causes? Will the IACC continue to politely ignore the environment side of the gene environment base of autism disorders? Will we actively direct our research towards cures and treatments?
If I have been too one sided I invite anyone reading this blog, including the academics and researchers who occasionally humor this autism dad with a visit to my blog, to please provide examples of real world results achieved by the IACC or indicate where the IACC is going and whether it still hopes to find causes, cures and treatments for the increasingly diagnosed autism disorders.
3 comments:
I am an American so I do have a right to demand that a "taxpayer funded institution" created by Congress should produce some results. The IACC is a failure and worse than that they create the façade that they're honestly addressing this health care disaster.
http://webcast.nccsite.com/nih/0007/index.htm#
On the blog, Age of Autism, the point has been adamantly made:
http://www.ageofautism.com/2012/08/my-conversation-with-iacc-chair-dr-tom-insel.html
http://www.ageofautism.com/2012/07/alison-singer-hand-picked-matt-carey-for-iacc-embellished-his-credentials.html#more
http://www.ageofautism.com/2012/07/the-iacc-i-am-completely-clueless-meets-again.html#comment-captcha
http://www.ageofautism.com/2012/07/hhs-secretary-sebelius-disconnect-with-reality-of-autism-clear-at-iacc.html
http://www.ageofautism.com/2012/07/katie-wright-on-iacc-2012.html?cid=6a00d8357f3f2969e2017616ac2696970c
http://www.ageofautism.com/2012/07/the-truth-behind-the-lies-play-by-play-from-iacc-meeting.html
Health officials continue to do nothing about autism. Experts at the Centers for Disease Control and Prevention have never called autism a crisis, despite the fact that they can’t tell us the cause or cure for autism and the rate continues to soar exponentially.
All the people we look to for answers about health problems are paralyzed by autism. Millions of dollars have been wasted on dead-end studies. In the end, when the sheer numbers bankrupt us, all the people who should have done something will be held responsible for ignoring the worse epidemic in U.S. history.
Anne Dachel, Media editor: Age of Autism http://www.ageofautism.com/
Thank you for your commentary and references Ms Dachel. Much appreciated.
I hate to say this but I believe that concentration on the "genetics" of disease is intended to provide "evidence" to support a form of genocide within the womb. It's been happening for decades now with down syndrome.
Matthew 24:12
"Because of the increase of wickedness, the love of most will grow cold"
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