Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report
Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs
All too often parents are told that their child’s GI symptoms are “normal” for someone with autism, and sent home without further investigation. Because many individuals with ASD might have undiagnosed medical conditions, often involving the gastrointestinal tract, ARI, ASA, Northwest Autism Foundation, and Easter Seals of Oregon sponsored an unbiased review of the evidence linking gastrointestinal disorders with autism. ARI’s Dr. Steve Edelson commented, “This is truly a human rights issue; every child deserves proper medical attention--whether or not they have autism.”
On May 29–30, 2008, a multidisciplinary panel led by Dr. Harland Winter and Dr. Timothy Buie of Harvard Medical School met in Boston, Massachusetts to develop consensus statements and recommendations for evaluating, diagnosing and treating GI disorders in individuals with ASD. Working groups included 27 experts in child psychiatry, developmental pediatrics, epidemiology, medical genetics, immunology, nursing, pediatric allergy, pediatric gastroenterology, pediatric pain, pediatric neurology, pediatric nutrition, and psychology. The meeting resulted in the publication of two papers in the January 4th edition of Pediatrics: “Evaluation, Diagnosis and Treatment of Gastrointestinal Disorders in Individuals with ASDs,” and “Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs.”
The crux of the problem is that "for children with ASD, behavioral indicators may be the only manifestation of pain.” The medical literature does not address appropriate modifications in the diagnostic evaluation based on the needs of people with disabilities, such as impaired language, and when symptoms are not recognized as being related to an underlying medical condition, relevant diagnostic studies might not be considered. Parents and physicians should be on the lookout for the most common GI disorders reported in people with ASD: chronic constipation, abdominal pain with or without diarrhea, encopresis, GERD, and abdominal bloating. Problem behaviors such as self-injury and aggression, as well as sleep disturbance or irritability, might be indicators of stomach pain.
Many families report improvements in behavior following initiation of gluten free and casein free (GF/CF) diets. The authors wrote: “Anecdotal reports that restricted diets may ameliorate symptoms of ASDs in some children have not been supported or refuted in the scientific literature, but these data do not address the possibility that there exists a sub-group of individuals who may respond to such diets. Professional supervision of restricted diets is recommended to prevent nutritional inadequacies.” It’s noteworthy that of the 3,593 parents who responded to ARI's survey, 69% felt that their child improved on the diet while only 3% felt that their child got worse. (We agree that a trained nutritionist or dietitian should guide any trial of a restricted diet. Towards that end, ARI sponsors a Nutrition Seminar twice a year to train professionals in the proper implementation of this and other diets.)
Dr. Buie, et al. conclude, “The approach to evaluation and diagnosis of possible underlying medical conditions, in particular GI disorders, should be no different from the standard of care for persons without ASD”—in other words, there is no excuse for sending a patient home without the same investigation that would be granted to their neurotypical peers. Parents who feel their child might have GI dysfunction or disease should bring these important papers to the attention of their physician. “These published reports bring much-needed focus to gastrointestinal problems that are commonly associated with the autism spectrum. The conclusions are clear: physicians need to be alert and responsive to such problems when treating these patients; additional research on prevalence, cause, and appropriate treatment is imperative,” says Dr. Edelson.
Jane Johnson is Executive Director of Defeat Autism Now.