FOCUS: Autism Speaks Research Focuses on Brain Pathways and Possible Medicines

When I read the headline New Hope in Autism Fight, an article in the Wall Street Journal by reporter Melanie Grayce West, my first thought was Yeah Sure, Another Ill informed Feel Good Autism Puff Piece in the Mainstream Media.  My first response was wrong.  The article was brief and to the point and provided direct quotes from someone who knows what she is talking about when it comes to autism disorders, Dr. Geraldine Dawson. It set out succinctly  the very clear, and important, focus of Autism Speaks funded research ... research aimed at developing new methods of autism diagnosis and treatment. The comments  provide a rational and informed basis for the optimism expressed in the title. 

The article began by reporting another large contribution to Autism Speaks by Summer Redstone and outlined briefly some of his other generous contributions to medicine and health care. It included  a no nonsense realistic description by Dr. Dawson of autism disorders and the challenges they present to those who suffer from them.  Not a whiff of  feel good "autism is beautiful" stuff. It indicated  point blank that autism is increasing without any of the usual attempts to obscure the increase that often accompany reports of new increases in autism rates. What I found most interesting though was the concise and clear description of the focus of Autism Speaks research:

The core of the current research conducted by Autism Speaks focuses on translating the basic biology that researchers have learned about autism into new methods of diagnosis or treatment. The science suggests that even though autism has many different genetic and environmental causes, their effects may converge on a set of common pathways in the brain.

"For the first time we have the possibility of developing medicines that could help to restore the function of these pathways," says Dr. Dawson. Ultimately these medicines would help to reduce the core symptoms of autism.

In the next few years, the biggest challenge to researchers will be to develop medicines that would be useful for the broader, general population of people with autism.

"We are actually very hopeful at this point that we will be able to conduct clinical trials with people with autism in the upcoming few years," says Dr. Dawson. "That's never been done. We've never really been as hopeful as we are now."


I hope that Autism Speaks does not abandon any of its contributions to researching the causes of autism, particularly to the woefully underfunded environmental causes of autism, but I am very pleased with the efforts to find new treatments.  The goals of exploring the biological basis of autism disorders, the common pathways in the brain implicated in autism disorders, and Dr. Dawson's expression of optimism that medicines aimed at restoring the functions of those pathways will be developed in the upcoming years is clear, sensible and ... focused.  It is that focus which is so important and which I had begun to think was missing in Autism Speaks' activities.

Many parents hope for the development of treatments, of medicines, which will help their autistic loved ones but many of us grow skeptical, if not outright cynical, after seeing so many false starts and so much spin and hoopla over very little.  Dr. Dawson has stated that she and Autism Speaks are actually very hopeful for development of new medicines that will actually help the general population of persons with autism disorders and explained why they feel that way.  I believe she is speaking honestly and is in a position to know what she is talking about.

I am, once again, optimistic about Autism Speaks and the future of autism research.

Autism Recovery: More Evidence of ABA Effectiveness

It has been a very bad week for the anti-ABA, anti-autism treatment crowd.

Laurent Mottron, Morton Ann Gernsbacher and Michelle Dawson, amongst others, are probably not happy with the latest autism research news out of Chicago where a study was presented at an autism conference by University of Connecticut psychology professor Deborah Fein showing recovery of between 10 and 20% of subjects originally diagnosed as autistic who were later determined to have lost the autism diagnosis after years of intensive applied behavioral analysis.

The recovery story itself is not knew. The highly respected Dr. Doreen Granpeesheh and other researchers and clinical psychologists, who actually work with autistic children, have presented stories of autistic children who have recovered after years of ABA treatment. What is most significant in this instance is the rigour of the analysis which resulted in the initial autism diagnosis and the thorough documentation involved in the study as reported in the Washington Post:

Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein's research a breakthrough.

"Even though a number of us out in the clinical field have seen kids who appear to recover," it has never been documented as thoroughly as Fein's work, Dawson said.

Previous studies have suggested between 3 percent and 25 percent of autistic kids recover. Fein says her studies have shown the range is 10 percent to 20 percent.

But even after lots of therapy _ often carefully designed educational and social activities with rewards _ most autistic children remain autistic.

Recovery is "not a realistic expectation for the majority of kids," but parents should know it can happen, Fein said.

Fein is being responsible in cautioning that recovery will not happen for most children with autism who receive ABA. But that does not mean that it is an all or nothing proposition either. Gains in reducing problem behaviors as in self injurious behavior and aggression, and skill acquisition with ABA use are well documented as noted in the American Academy of Pediatrics Management of Children with Autism Spectrum Disorders report (2007):

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

ABA for autism. The evidence of ABA effectiveness in treating autism has grown over the past decade despite the ideological obstinacy of those who condemn ABA. This week that evidence grew yet again.

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Autism Science Foundation - Doesn't Science Require An Open Mind?

The Autism Science Foundation, a new purported autism advocacy group, has been formed and announced to the world.

I have some concerns about the ASF's approach to advocating for "autism science". The new Foundation has announced that it will focus on non-vaccine related causes of autism. From its inception it has ruled out the possibility that vaccines could cause or contribute to autism, even in potentially susceptible population subgroups. To this humble non-scientist such an approach smacks more of political goals than scientific research. The ASF makes a clearly political statement supportive of vaccine programs and concluding with finality that vaccines do not cause autism:

The Autism Science Foundation’s mission is premised on the following facts and principles:

• Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

In fact Dr. Bernadine Healy former CDC head, and Dr. Julie Gerberding, recent NIH head, have indicated that more vaccine autism research is needed. Dr. Duane Alexander, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), an NIH agency stated, as reported by David Kirby at the Huffington Post that "scientists must investigate susceptible subpopulations of children, including kids with mitochondrial disorders and those who have trouble metabolizing mercury." Kirby quotes Dr. Alexander's statement from a February 24, 2009 interview with Dr. Geraldine Dawson of Autism Speaks:

"One question (is) whether there is a subgroup in the population that, on a genetic basis, is more susceptible to some vaccine characteristic or component than most of the population, and may develop an ASD in response to something about vaccination. We know that genetic variations exist that cause adverse reactions to specific foods, medications, or anesthetic agents. It is legitimate to ask whether a similar situation may exist for vaccines"

Given the existence of legitimate questions concerning possible vaccine autism questions it seems odd for an organization founded to provide quality scientific research to make such a dogmatic statement conclusively ruling out those very questions. It also seems odd that the founders of this organization believe that public confidence in the vaccine program will be maintained by shutting the door on areas of research in which substantial numbers of the population believe are legitimate areas of inquiry - including members of the public like Dr. Bernadine Healy, Dr. Julie Gerberding, Dr. Duane Alexander and Dr. Jon Poling.

Personally, this father of a 13 year old autistic boy does not have a rigid view of the vaccine-autism issues. While I once accepted without serous question the official view of these issues I have changed my position. While I have not concluded that vaccines or vaccine ingredients cause autism I now have an open mind on the issues, largely because of the views expressed by credible people like Dr. Healy. As a lawyer I can also not ignore the fact that some of the vaccine cases have resulted in settlements in favor of the plaintiffs where a vaccine-autism connection was alleged, particularly in the Banks and Poling cases.

Personally, this humble member of the public would have greater confidence in the safety of vaccine programs if more research of the type suggested by Doctors Healy, Gerberding and Alexander were conducted and the results were positive than by the incessant repetition of the dogma that the vaccine-autism link has been disproven. It has not. And many members of the public know that. It is time to do the research and move on.

Hopefully the "Autism Science Foundation" will stick to advocating FOR research of possible autism causes, and treatments, and not spend its time simply promoting the view, not shared by all, that there is no possible vaccine- autism connection.

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