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Children's Of Boston Plays it Safe With Autism Research.

Posted Nov 24 2009 12:00am

Fish on bike By Katie Wright

In writing about Dr. Hanson’s article for Children’s Hospital of Boston, “Is Autism Really on the Rise?" (HERE)  my intention was to draw attention to the serious disconnect between how researchers perceive autism and how our children experience autism.  Nowhere is this disconnect more apparent than in research priorities. All too often we see autism research centers conducting almost entirely genetic/ face processing orientated autism research which hugely diverges from the actual research and treatment needs of ASD children, many of whom are chronically ill and have no place to go for medical treatment.

Matt Cyr of CHB wrote that I implied that CHB conducts the research they do for financial gain. I never said that and do not believe that to be the case. I see no nefarious motivations behind the institution’s dated and irresponsible autism research agenda. I think CHB is simply doing research that is safe, noncontroversial and relatively easy to get funded and published. However, this strategy has not served our children.

Let’s look at research CHB is currently conducting:

  • Spatial Processing, why autistic kids like electronic media
  • Face Processing
  • Let’s Face It (more face gazing)
  • 88 Middle Eastern Families and their genetic clues to autism
  • Tuberous Sclerosis face processing vs regular autism and face processing
CHB has received millions from the NIH and AS to study these subjects.  My point is not that all this research is worthless or that CHB doesn’t care about kids living today with autism. The problem is that these topics, such as facial gazing, are dated, grossly over funded, redundant and  offer little help, relevancy or hope to the families who secured these research funds in the first place.  Autism families all over the country have worked incredibly hard advocating for more research dollars for this disease. We have taken our children to Congress, to the Senate, campaigned relentlessly for the CAA, raised money from friends and families in the hope that we might finally achieve some causation and treatment breakthroughs that will help our children. Sadly, that has not been the case.  I challenge any autism researcher to find families clamoring for more eye gazing research or more research into Tuberous Sclerosis. What you will find are families whose children desperately need clinically applicable research into combating brain inflammation and regression,  PANDAS and autism, GI disease, dietary interventions, seizures and toxicity...

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