Sunday, March 28, 2010

New York Times Glosses Over Anti-Cure, Anti-Family Positions of Obama Disability Nominee Ari Ne'eman

I do not pretend to be a fan of the New York Times  autism coverage but I acknowledge that its article on Obama disability nominee Ari Ne'eman gets it ... about  half right and for that  this humble autism dad awards the NYT a D-  grade.   I must admit that  the NYT made a better effort than usual in  providing some semblance of objective balance before telling parents what autism is all about in Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism.  But the NYT still fails to demonstrate actual knowledge of an important autism research issue and fails to acknowledge the biggest issue of all ... the right and responsibility of parents to represent the interests of their children;  not some stranger with no professional expertise and little in common with their children.

The NYT does gently acknowledge, while down playing it somewhat,  that Mr. Ne'eman is a high functioning young university student of obvious intelligence and  excellent communication  and organizational abilities unlike many of the severely autistic children and adults on whose behalf he claims to speak.  He can, unlike  severely autistic persons like my son, operate smoothly  in the worlds of  high powered Washington politics and  the ultra influential New York media . What the NYT fails to fully address is the fact that Mr. Ne'eman purports to speak on behalf of other people's children and that he does not show respect for the role of parents in raising, caring for,  and representing the best interests of their children..... unless of course they agree with his views of what is best for their own children.  

The NYT also presents Mr. Ne'emans simplistic and erroneous views about autism research.  It is true that most autism research is genetically oriented.  Public health authorities that influence autism research funding decisions have insisted on genetically based autism research for more than a decade as described by Teresa Binstock who called that mindset the "It's Gotta Be Genetic" model of autism.  What the article misses by quoting Mr. Ne'eman's views of autism research is the growing push for environmentally based autism research and for treatments and cures other than termination of  "high autism risk" pregnancies.

Dr. Jon Poling, neurologist,  is one of  the most famous and well informed parents who has advocated for exploring environmental causes of autism ... and for seeking treatment and cures.  His comments in the Atlanta Journal Constitution present a much more complete and informed views of the direction that autism research should go than the narrow perspective offered by Mr. Ne'eman and the NYT:

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."
We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

Dr. Jon Poling,
Atlanta Journal Constitution, March 13, 2009

The NYT cites Mr. Ne'eman's reduction of autism research to research aimed at  pre-natal detection of autism that could lead to early terminations of pregnancies in cases of suspected autism.  Mr. Ne'eman may honestly believe that parents and others seeking causes and cures for autism are so narrowly focused but it is inexcusable for the New York Times to present that view without providing more information about autism research to the public.  Without getting into the views of different camps in the autism wars the NYT could at least have told its readers around  the world about the IACC's strategic autism research plans readily available on line at:

The introduction to the IACC strategic plan states:


It is imperative that resources be devoted to research commensurate with the public health need. Specifically, we need research that deepens our understanding of ASD, including the complex genetic and environmental factors that play a role in its causation; development of improved ASD diagnostic approaches and treatments; and science to enhance the level of services and supports available to people with ASD, their families and caregivers. With current scientific knowledge and tools, we have unprecedented potential for discoveries that will improve the quality of life for people with ASD.

When Mr. Ne'eman tells the world that WE don't want to be cured he purports to speak on behalf of  all persons with autism disorders including the severely disabled. When Mr. Ne'eman protests a video by parents describing autism from their perspectives as parents of severely autistic children he is opposing their right to speak on behalf of their children. When he protests Autism Speaks he is opposing efforts to increase autism awareness and raise funds for autism research goals supported by many parents and families with autistic loved ones.

Hopefully some day the NYT will have an epiphany and come to understand that Mr. Ne'eman opposes the right and responsibility of parents of children with autism disorders to seek treatment and cure for their own children.  He is obstructing their efforts to give their children the best, fullest lives they can.  
Hopefully someday the NYT will come to realize its own role in promoting such efforts to interfere with and obstruct the efforts of families trying to help their own autistic children.

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2 comments:

MJ said...

The potential good news in the article is that Ari's nomination has help up for some reason. I only hope it was done by someone who actually understands the issues involved in autism and will block his nomination.

Autism Reality NB said...

MJ

I am only a Canadian observer of US politics and probably not well enough informed but I suspect the nomination will go through.

In the meantime the NYT has done another sorry job at presenting autism issues for public consumption.