My Letter commenting on Newsday's Report on Autism Speaks' Funded AGP Gene Mapping Research

[Guest guest]

The Newsday, (Long Island, NY- my " hometown " ) article to which this

letter responds is reproduced below

To the Editor:

As a parent of an affected child I would like to point out the

imbalance in your reporting about the genetic research funded by Autism

Speaks. [ " Decoding autism genes " BY JAMIE TALAN.March 1,2007 Newsday].

You report that scientists found a gene called neurexin 1 that appears

abnormal more often with autistic people. You fail to mention that the

abnormal neurexin gene was found by the Autism Speaks researchers in

only 1 family out of the 1168 families that participated in the study.

The public statements of the principal investigators have greatly

exaggerated the importance of the findings, which are preliminary, and

certainly do not suggest that researchers have found anything that can

be termed an " autism gene. "

While you are correct in reporting that neurexin 1 regulates an

important brain chemical called glutamate, which excites cells into

firing and transmitting impulses, you fail to mention that disruption

of the role of glutamate in brain function has also been found by

researchers to be caused by environmental toxins and not genes.

Perhaps the only accurate statement in the report is the one attributed

to Fred Volkmar who stated " People should not think that this means we

have a blood test for autism. We don't. " The hype over this study

belies the reality that, despite the expenditure of an enormous amount

of research dollars collected by a private organization from ordinary

people in communities across the country, little headway has been made

in genetic research trying to identify genes as the cause of autism.

Genetic research has produced nothing to develop effective treatments

for children with autism.

You comment that a researcher thinks there may be dozens of genes that

trigger autism, yet the Autism Speaks funded study fails even to

confirm one such trigger, if such so-called genetic " triggers " even

exist.

The best that can be said of this research is that it may have the

potential to uncover combinations of genetic variation in our

population that may render some people susceptible to environmental

triggers that cause autism. Unfortunately, the likely actual triggers

that can " cause " autism, environmental factors including vaccines, have

been accorded relatively little research attention by private

organizations like Autism Speaks and the National Institutes of Health.

Exaggeration of the importance of the Autism Speaks genetic research

suggests that there exists an effort to promote the idea that " autism

is genetic " when little evidence exists, despite much effort the

expenditure of huge resources, showing any genetic mechanism or trigger

for the causes of autism. The nature of this effort was set forth

clearly by a high-level official of Autism Speaks who was quoted by the

Wall Street Journal on February 27, 2007 as stating that " [a]utism is a

genetic disorder. The only thing the parents do wrong is they have bad

genes. " Such an extreme statement is poorly supported by research. The

quoted statement betrays an agenda that seeks to prove autism is

primarily genetic, in face of failed studies.

I encourage Newsday to look more deeply into the story behind hyped

claims of autism research so that your readers will not be misled into

thinking that a breakthrough has occurred when, in reality, little new

or significant has been uncovered.

J. Krakow

Attorney At Law

2001 Marcus Avenue, Suite N125

Lake Success, New York 11042

516-354-3300

rkrakow@...

Mr. Krakow is an attorney who represents a number of families in claims

alleging the children's neurodevelopmental disorders, also labeled

" autism " has been caused by vaccines, vaccine components, mercury in

vaccines, or the MMR vaccine. His son is one of the claimants. He is

also a founder and President of A-CHAMP, a national political advocacy

group that works to advance the welfare of children with

neurodevelopmental disorders, including those who have been injured by

vaccines or vaccine components.

http://a-champ.org

http://www.newsday.com/news/health/ny-hsaut0301,0,966760.story?coll=ny-

leadhealthnews-headlines

Decoding autism genes

BY JAMIE TALAN

jamie.talan@...

Email this story

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March 1, 2007

An international collaboration between scientists and parent advocacy

groups -- who are contributing their own DNA for study -- is helping to

uncover the genetics of autism.

" We are definitely on the way to unraveling this disorder, " said Portia

Iversen, a Los Angeles mother of an autistic boy who, with her husband,

Jon Shestack, started the first bank to collect DNA from families with

autistic children. Since it was formed 10 years ago, a thousand

families have contributed blood to the bank, called the Autism Genetic

Resource Exchange.

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The parent advocacy group the couple started in 1995, Cure Autism Now,

has merged with the National Alliance for Autism Research and Autism

Speaks, two other such groups, and all three now contribute DNA from

families with autism.

These databases are part of the Autism Genome Project and have helped

researchers achieve the scientific power of a large sample from which

genes relating to the condition can be gleaned.

In the latest study, published in the March issue of Nature Genetics,

Dr. Fred B. Volkmar and Ami Klin of the Yale University School of

Medicine used DNA collected from 1,200 families to scout for genes that

could trigger autism.

The international collaboration began in 2002 and involves more than

120 scientists at 50 research centers. The parent advocacy

organizations funded the study in collaboration with the National

Institutes of Health. And the consortium has just received $14.5

million more from NIH, the parent advocacy groups and a number of

scientific organizations to continue research.

For the newest study, scientists used gene chip technology to scan the

genome, but they also looked for so-called copy variations in genes,

which could trigger abnormal brain development.

The scientists found a gene called neurexin 1 that appears abnormal

more often with autistic people. Neurexin 1 regulates an important

brain chemical called glutamate, which excites cells into firing and

transmitting impulses.

" This is just the beginning, " said Volkmar, director of the Yale Child

Study Center. " There are probably many genes involved in autism. People

should not think that this means we have a blood test for autism. We

don't. "

He suspects that there may be dozens of genes that trigger autism,

which is considered a spectrum disorder because symptoms and severity

vary from person to person.

The next step is to figure out whether the neurexin 1 gene leaves its

mark in the brains of people with autism. Once specific genes are

identified, it helps scientists understand the disorder and develop

targeted therapies.

Autism is a developmental brain disorder caused by a complex and mostly

unknown interaction between genes and environmental factors. Recent

studies have shown that one in every 150 children born today will have

autism. Scientists are hunting for genes and environmental factors that

could put children at risk.

" This study offers hope that we might be able to translate genetic

findings into clinical practice, " said Andy Shih, chief scientific

officer for Autism Speaks in Manhattan.

Shih said that in the future, a genetic test may be able to alert

families to a developmental problem, so treatment can begin as early as

possible.

" Until now, a lot of scientists couldn't get hold of such large DNA

samples, " said Iversen, who recently wrote a book about autism called

" Strange Son, " published by Riverhead Books. " This has helped the field

enormously. "

Laurie Murdock Gould of Port Washington, whose two sons have autism,

said, " I hope that every autistic child -- and every family -- will

benefit from these discoveries. " When her oldest son, , was

diagnosed at the age of 3, she said " there was so little research going

on. "

Two years ago, she started the Mosaic School in New Hyde Park, which

uses behavioral approaches to help autistic children learn to

communicate.