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IACC Gains Troubling Insights Into GI Disorders

July 10, 2013

BETHESDA, MD (July 10, 2013) -- The Interagency Autism Coordinating Committee (IACC) was presented troubling data on the severity and pervasiveness of gastrointestinal disorders affecting children and adults with autism, coupled with a lack of awareness and response from the medical community.

In a presentation to the IACC, Dr. Timothy Buie with Massachusetts General Hospital estimated that over half of children with autism spectrum disorders experience GI disorders, yet few receive treatment. Buie said the usual symptoms of GI distress were often absent during patient intake, so doctors less familiar with autism could overlook them.

He said his approach "focused strongly on the idea that problem behaviors were strongly associated with GI problems and should prompt caregivers to seek evaluation."

Buie serves as director of Gastrointestinal and Nutritional Services at MassGen's Lurie Center for Autism, a part of the Autism Speaks' Autism Treatment Network.

The IACC viewed video taken of young adults with autism engaging in aggressive and self-injurious behavior prior to GI treatment. Buie said signs of GI pain for more severely affected and minimally verbal children with autism can include refusing food, strange posturing, self-injurious or aggressive behavior, diarrhea and constipation.

The IACC meeting also was highlighted by presentations from outside experts about emergency response measures for episodes of wandering and elopement..

Robert Lowery, executive director of the Missing Children Division at the National Center for Missing and Exploited Children (NCMEC), explained the special search, recovery and reunification procedures his organization has put in place to deal specifically with children with autism and other special needs.

He urged IACC to promote the agency's 24-hour hotline, 1-800-THE-LOST® (1-800-843-5678), to law enforcement agencies to obtain advice during searches as well as referrals for search-and-rescue experts who may be available for immediate deployment.

Also during the IACC meeting, Alycia Halladay, Ph.D., Autism Speaks' senior director for environmental and clinical sciences, and Jill Escher with the Escher Fund presented on their joint study on emerging themes in gene and environmental interaction. This included the role of the germline and the complex interaction of exposures on neurodevelopment.

The report was initially presented at the Environmental Epigenetics Symposium held in March at the UC Davis MIND Institute in Sacramento. 

James Perrin, M.D. presented to IACC on "Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism," then led a panel on "Comorbid Conditions in People with Autism." The panel discussion included a presentation on the Autism Speaks' Autism Treatment Network, with a focus on GI, immune and metabolic comorbidities.

Perrin also addressed wandering issues, speaking about "Parent-Physician Efforts to Address Wandering."

Portia Iversen, founder of the Cure Autism Now Foundation, presented on "Rethinking Nonverbal Autism." She compared the lack of research now conducted on non-verbal individuals with autism to the lack of funding for autism in general 20 years ago.

IACC also took steps to produce a Strategic Plan for Autism Research in 2013.