Open Letter to Autism Speaks

– June 7, 2009Posted in: Articles
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F. Edward Yazbak, MD

F. Edward Yazbak, MD, FAAP
TL Autism Research
Falmouth Massachusetts

Dear Ms. Singer.

Your letter to the Wall Street Journal was circulated and read by many of us in the autism community.

Here it is, for the benefit of anyone who did not see it.


Autism Speaks’ Clarification Statement re: Wall Street Journal

At Autism Speaks, our position is that autism is a genetic disorder with an environmental trigger.  Genetics is an important determinant in the disorder, but not the sole factor.  Even in identical twins, with carbon copies of DNA, the concordance rate is not 100%, but rather 85-90%.  Thus we know that environmental factors somehow interact with genes to cause autism.  It is not clear what those environmental factors are, or whether they occur pre or post-natally, and thus we need to cast a wide net with regard to autism research.  What we do know, however, is that autism is not caused by watching television or by bad parenting.

If this view was misrepresented in the Wall Street Journal, it was only done in the course of trying to rebut, in the strongest possible terms, the return to blaming parents for their children’s autism (click here to read the article on the Journal’s site).  Such backwards thinking is incredibly detrimental to our cause and is insulting to individuals with autism and their families.  We must continually strive to increase awareness of autism so that everyone understands the urgency of finding answers about a disorder that now affects one in every 150 children.  Autism Speaks is committed to directly funding and fighting for government dollars to support the most advanced research into a range of potential causes of autism, as well as better treatments and, hopefully, a cure.

Alison Singer
Senior Vice President, Autism Speaks
http://www.autismspeaks.org/wsj_statement.php

Autism is certainly not a genetic disorder for three reasons:

1. Genetic disorders have typical presentations and their causes are relatively easy to discover.  We have had at least 15 years of serious and very expensive genetic research by top notch scientists and we are no way near finding a ‘genetic’ cause for this awful disease
2. Genetic disorders do not increase at such astronomical rates
3. Genetic disorders actually decrease with time.  There are fewer 5 year-old children with Down Syndrome now than 30 years ago – because we now know the cause of the disorder and how to test for it.

Children with autism have a genetic predisposition.  The fact that such predisposition is increasing (and increasing the incidence of autism) is ample proof for the presence of an environmental trigger in the previous generation.  It is an undeniable fact that the present generation of children is the most vaccinated ever.  It is also a fact that the present generation of mothers is the most vaccinated ever.  I believe that I may be one of the few researchers who have ever investigated that angle.

Except for pure genetic disorders that do not need triggers, a clinical illness is always due to one or more predisposing causes and one or more precipitating causes.

Regardless of how many predisposing causes a child has, he or she will not exhibit clinical symptoms and develop the disease unless he or she is exposed to a precipitating trigger.  The period in history when autism first appeared, and the timing of the regression in the majority of cases clearly indicate what those triggers are and where research should be focused.

My wife cried when she saw and heard Mr. and Mrs. Robert Wright on the Imus show.  Their little grandson’s story was so similar to ours. I wrote a 3 page letter to Mr. Wright in which I offered to help (gratis) and I faxed it to him at NBC less than an hour after the show. It was never acknowledged.

The Board of Directors at Autism Speaks must initiate and support independent clinical research into all environmental triggers. Nothing should ever be ‘out of bounds’. Unless you change or balance your scientific advisory board, you will never seriously look at the role of vaccines and Thimerosal.  A change in direction would be welcome.

We certainly need early diagnosis and early intervention but wouldn’t it be better if the children did not develop the disease altogether and did not require a lifetime of care?

The brain of a child is a wonderful gift. Let us keep it uninjured and undamaged instead of trying to rehabilitate it.

Sincerely

F. Edward Yazbak, MD

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