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July 16, 2010 IACC Meeting Summary

July 20, 2010

The Interagency Autism Coordinating Committee (IACC) met on Friday, July 16.

Michael Ganz, Ph.D., Adjunct Assistant Professor of Society, Human Development and Health, Harvard School of Public Health, presented on the Cost of Autism in the United States. Dr. Ganz's 2007 study reporting $3.2 million incremental lifetime cost per individual is frequently cited with regard to autism public policy. He stated that knowing the cost allows policy makers to understand the value of prevention. His study considered the incremental costs associated with autism for direct medical (physician, treatment and therapy), indirect medical (child care, respite care, etc.) and indirect cost (lost productivity for individual and caregiver). He argued that the study was likely an underestimate as it did not consider legal, advocacy, and research costs, or lost productivity of others including grandparents and siblings. Ganz also estimates the direct medical costs of autism are approximately 5% of the health component of the nation's GDP. In conclusion, he stated that autism is expensive: spending twice as much in heath care, sixty percent of which occurs before the age of 21.

The next presentation was a research update by Isaac Pessah, Ph.D., Director, UC Davis Center for Children's Environmental Health and Disease Prevention. Dr. Pessah discussed the Center's multi-disciplinary approach to autism, which includes epidemiology and clinical and cellular immunology. The Center's CHARGE (Childhood Autism Risks from Genetics and the Environment) study was launched in 2003 as a study of 1,000 to 2,000 children with differing patterns of development. The goal is to better understand the causes and contributing factors for autism or developmental delay. Three groups of children are being enrolled in the CHARGE study: children with autism, children with developmental delay who do not have autism and children from the general population. All of them are evaluated for a broad array of exposures and susceptibilities. The study has looked at mercury and autism susceptibility. It also is studying the associations of persistent organic pollutants (including dioxin and non-dioxin like compounds).

Philip Landrigan, M.D., MSc, Professor and Chair of the Department of Preventive Medicine, Mount Sinai Medical Center, followed with a presentation on What Causes Autism? The Case for an Environmental Contribution. He said that there are four arguments making this case: the vulnerability of the human fetus to toxic chemicals; evidence that pre-natal exposure causes autism; lack of information on potential toxicity of various chemicals; and the evidence from the massive Minamata, Japan mercury exposure, which showed that children are especially vulnerable due to smaller body mass. He stated that the proof of concept is that small numbers of environmental exposures (e.g., Thalidomide, Misoprostol, and Valproic acid) have been convincingly linked to autism. He stated that there is no evidence to date that vaccines cause autism based on studies in the UK, US, Denmark, Finland and, most convincingly, Japan. Dr. Landrigan reported that there are chemicals known to cause injury to the developing brain. But there is a lack of information on toxicity of thousands of synthetic chemicals. Dr. Landrigan suggested a three-pronged strategy is needed: enhanced testing of chemicals; neurological and biological research on timing of exposure; and epidemiological studies of children, especially prospective, multi-year, that measure clinical exposures. Dr. Landrigan is Principal Investigator for one of the seven Vanguard Centers of the National Children's Study.

The afternoon session began with the public comments segment of the meeting. This was followed by a presentation by Eric Courchesne, Ph.D., Professor, University of California - San Diego on Neurofunctional, structural and cellular abnormalities in the first years of life in ASD. He presented on the Autism Pediatric Network, which is a San Diego County study of 400-plus individuals aiming to build on prior research in the field on abnormal brain growth. It had been found that brain volume appears to be normal at birth in children later diagnosed with autism, but that by 2-4 years of age 90% of children were found to have a brain volume larger than the normal average. Among many topics Dr. Courchesne discussed were the distinct differences in ASD simplex and ASD multiplex and the right-dominant nature of the ASD brain versus the right and left active in a typical brain. He stated that we do not know much about the neuropathology of young autism and that there is no known post-natal neuron excess cause. His suggested hypotheses on the differences in the early brain are too many cells, too many dendrites; too many synapses; or excessive axon or myelin. During the Q&A, it was suggested that animal studies need to be tied to anatomy, in addition to behavior. It was also suggested that there is a need for novel methods of early imaging.

The afternoon focus shifted to services with a presentation by IACC public member Denise Resnik, Board Member and Co-Founder of the Southwest Autism Research and Resource Center (SARRC). She presented on her organization's effort to be a catalyst in its community through a focus on being research-based; family-centered; and pioneering. Ms. Resnik also reported on the Advancing Futures for Adults with Autism (AFAA) initiative. This included a Congressional Briefing the preceding day on adult needs. Autism Speaks is an organizing partner in this initiative.

Finally, Ms. Resnik presented on Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders, a newly released collaborative study by the Urban Land Institute (ULI) Arizona, SARRC, the Arizona State University (ASU) Stardust Center for Affordable Homes and the Family and the ASU Herberger Institute School of Architecture and Landscape Architecture. This study evaluated existing residential programs; developed a set of goals for sustainable communities; identified available financing plans for scalability; provided guides for the design of residential options; and aimed to increase public awareness of growth trends in population.

Carol Quirk, Ed.D., Director of Maryland Coalition for Inclusive Education, then presented on Including Students with Autism Spectrum Disorders: Research and Practice. She stated that their goal is to place students in the least restrictive environment possible. They strive for inclusion and an accepting environment in school. It was noted during the Q&A that one of the challenges is disseminating education research. IACC member Gail Houle, Ph.D., noted that is a source of potential dissemination.

The committee turned to other committee business. The Services subcommittee presented on its planning for a Fall Services Research Workshop. It is next scheduled to meet on August 10 to continue its planning for the workshop.

Della Hann, Ph.D., Acting Director, Office of Autism Research Coordination (OARC) at NIMH reported on the open Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

Dr. Hann also reported on the mid-year update on research advances. IACC members are to send their top five published articles. OARC will send this list to the IACC to vote for the top 10 publications to serve as a mid-year installment of the top advances in autism research. She also reported on the portfolio analysis for which a solicitation is underway with both federal and private funders of autism research.

Finally, Committee members reported on upcoming meetings of interest to members. These include: NICHD is hosting a meeting on August 19 on Disparities in the Identification of Children with ASD; NIEHS is holding a meeting on September 8 on novel opportunities relating to environmental factors; IACC public member and Autism Speaks' chief science officer Geri Dawson, Ph.D., announced that there is a meeting on genetic risk in Toronto on September 1.

The next IACC meeting is scheduled for Friday, October 22.