A significant percentage of children with autism spectrum disorders (ASD's ) have gastrointestinal symptoms including diarrhea, constipation, abdominal pain and reflux. An expert panel, co-chaired by Dr. Timothy Buie and Dr. Harland Winter, both pediatric gastroenterologists at MassGeneral Hospital for Children, reviewed existing medical literature related to children diagnosed with autism spectrum disorders with the goal of establishing evidence-based recommendations for evaluation and management of GI problems in this patient population. The group, which included 27 experts in 12 scientific disciplines, including pediatric gastroenterology, pediatric allergy, pediatric pain and child psychology, found that a lack of high-quality clinical research data makes evidence-based recommendations impossible. While there are anecdotal reports of improvements in autistic behaviors after dietary interventions -- there is no scientific proof that special diets help or don’t help autistic children. They also found no proof that food allergies, food sensitivities or gastrointestinal problems cause autism or are more common in children with autism. The panel's report was published in the January issue of Pediatrics. Dr. Buie was the lead author. Click here and here for the abstracts.
Dr. Buie is one of the world’s leading experts on GI connections to autism, as well as biomedical treatments, dietary interventions and nutritional treatments of children with autism. He is a founding developer of the Autism Treatment Network (ATN), a multi-center national organization of academic programs located throughout the U.S. and Canada that medically manage children with autism. He is also on the staff of the Lurie Family Autism Center/LADDERS, which is a multi-specialty collaborative program sponsored by Massachusetts General Hospital serving patients with autism and other developmental disorders.
Q: If I have a child with an autism spectrum disorder (ASD) who I think also has a GI problem, what should I do?
A: First, I would discuss the concern with your pediatrician. Many problems and evaluations can be discussed and managed by her. If there is need for additional help, she may ask you to make an appointment with a gastroenterologist. Children with ASD's should have the same thorough diagnostic workup for GI symptoms as individuals without ASD's. In our clinic, we have a variety of techniques for treating this patient population. We schedule early morning appointments so children aren’t delayed in the waiting room and we try and distract them by blowing bubbles during a blood draw. Often child life specialists can be present to help if painful procedures are needed.
Q: Parents, like actress Jenny McCarthy, have reported improvements in autistic behaviors after dietary treatments. Did this review establish that such dietary modifications are not helpful for children with ASD's?
A: Not at all. We found that there is a great need for more rigorous research on the subject. We believe that diets or nutritional supplements are not likely to help all children with autism and should not be recommended for all and so far the medical literature echoes that. We need to do a better job figuring out what subgroup of children with autism might benefit from these treatments. We still have a lot to learn about the gut and how it may or may not contribute to behavioral symptoms. We also need more information in order to determine how best to treat GI symptoms in autistic children.
Q: Are GI problems more common in people with ASD's?
A: The research is limited and therefore it's difficult to assess. There are reports of gastrointestinal symptoms in children with ASD's ranging from 9 to 70 percent. This kind of spread in the reported prevalence adds to the confusion. Several reports, including our own data suggest that about half of the children with autism will have GI issues. The panel agreed that in order to answer that question we will need prospective multi-center studies using better standardized tools.
Q: What are the most common symptoms of GI distress in people with ASD's?
A: Chronic constipation, abdominal pain with or without diarrhea and the involuntary passage of feces as a consequence of diarrhea. Patients can also suffer from acid reflux and abdominal bloating. The consensus statements in the recent report state "GI conditions reported to be common in individuals without ASD's are also encountered in individuals with ASD's ." But, "the prevalence of (specific) GI abnormalities in ASD's is incompletely understood."
Q: Does GI distress worsen autism-related problem behaviors?
A: Yes. In fact, problem behavior in patients with ASD's may be the primary or sole symptom of the underlying medical condition, including some gastrointestinal disorders. Pain may actually initiate the problem behavior.
Q: What is the biggest hurdle when it comes to diagnosing GI disorders in children with ASD's?
A: We need to stop blaming behaviors on a child's autism. While not eliminating the idea that a child might act out or have behaviors from the frustration of communication issues, we need to continually look for the underlying factors that may account for the behavior. That might include gastrointestinal pain, but also dental pain, migraines and earaches. We won't find these problems if we don't consider them. Clinical practice guidelines for the management of ASD's have not included routine consideration of potential gastrointestinal problems. In those cases, focusing purely on behavioral treatments will be ineffective.