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Autism Plan

The New York Times yesterday ran an article about the new interagency plan to combat autism. The plan was announced at the autism summit referred to below. The announcement marks the first time that various departments of the federal government have come together to establish goals, set priorities and map out a coherent government policy regarding autism.

Other news reports are available from the Seattle Times, USA Today, Reuters, and the San Jose Mercury News.

Jane Gross of the Times reports:

The plan includes objectives like the development of teaching methods that will allow 90 percent of autistic children to speak; the identification of genetic and nongenetic causes of the condition; and adequate services for all afflicted children in the next 7 to 10 years…

The three-pronged plan sets goals for more coordinated biomedical research, earlier screening and diagnosis, and effective therapy. The plan demands, for the first time, collaboration between scientists, clinicians, educators and policymakers in an array of federal agencies.

"Millions of people need help," said Robert L. Beck, president of the Autism Society of America, the nation's oldest and largest autism advocacy group. "And this is a new opportunity and a very exciting one." …

The plan, which will be reviewed by the Interagency Autism Coordinating Council, established by the Child Health Act of 2000, is presented in broad brush strokes, with few details and no price tags. It was drafted by scientists to assess the state of autism research and identify the roadblocks that might be hindering progress in understanding the cause and the best treatment options.

The plan lays out a timeline, in increments of 1 to 3 years, 4 to 6 years and 7 to 10 years and then ranks goals according to the likelihood of achieving them. Realistic goals in each of the three stages include the development, evaluation and institution of effective treatments, in collaboration with the Department of Education.

More challenging goals, by contrast, include finding effective drugs for the symptoms of autism and identifying environmental factors that may contribute to the development of the disorder.

There is much to like about the plan. It is the first time that the Federal government has taken a sufficient interest in the subject of autism to actually have a plan. Having a plan, even a less than ideal plan, is better than having no plan at all.

Secondly, the plan was developed by scientists including people from the biomedical field and the social sciences. That is good. The plan has a better chance to succeed if the direction of research is determined by science and not by politics.

Third, the interdisciplinary approach to the plan is a good. Coordination between the biomedical and social science research may be critical. For instance, one area of biomedical research is an effort to identify “bio-medical markers” to predict a child’s susceptibility to autism. Those markers may be genetic, blood proteins or some combination of both (and/or others).

At the same time, social science research needs to determine which educational and behavioral therapies are most effective.

It may be autism has multiple causes. It may also be that different therapies are more or less effective for different sub-groups in the autistic population. The coordination of the identification of bio-markers with the social science research may lead to the discovery that different social science therapies work better (or worse) for different sub-groups of children. That would be a huge step forward.

Fourth, the plan sets goals and timetables. Those goals and timetables will allow progress to be carefully measured.

In general I am quite pleased with the plan coming out of the Autism Summit. It should be said, however, that having a plan and implementing it are two different things. The current plan includes no funding provisions. NIH currently funds about $75 million of autism research annually. Some advocacy groups have suggested that about $500 million annually will be required to implement the plan. I will be happier when full funding is provided.

Posted by Dwight Meredith at November 20, 2003 02:35 PM | TrackBack