Medical Professional Publications

GI Issues in Children with Autism Require Special Attention

(From the November 2013 Issue of PediatricsOnline)

The Centers for Disease Control and Prevention report that one out of every 88 children in the United States has an autism spectrum disorder—a 78 percent increase since 2007. That rise, coupled with research suggesting that these children may be more prone to gastrointestinal (GI) problems, has some clinicians and researchers looking at addressing GI issues as a standard part of comprehensive care for children with autism.

Studies report that as many as one in every three children with autism has a chronic digestive problem. GI issues in children with autism can impact quality of life for both the child and the caregiver, but are often overlooked as crucial contributors to behavior and mood. Often, because of communication difficulties and the hidden nature of many of these complications, the only sign of GI issues is the child’s behavior.

Many autism specialists now acknowledge the importance of looking beyond psychology to treat behavioral problems in children with autism, and examining the occurrence of GI complaints in this population may be a good place to start. Some studies suggest a potential genetic link, while others speculate the cause may be due to alteration of brain-gut interactions. Whatever the connection, treatment options resulting from laboratory research may be a long time coming.

For now, however, there are practical and immediate solutions pediatricians can use to control GI issues and successfully complete toilet training in their patients with autism. These interventions can markedly improve the child’s behavior as well as his or her quality of life—making visits to family and friends easier and relieving some burden from caregivers.

Screening Patients with Autism for GI Problems
Many children with autism have numerous healthcare providers and behavioral specialists working with them on a regular basis. By incorporating screening strategies to address the combination of autism and GI issues into their practice habits, pediatricians can develop a more comprehensive plan for patient care.

The most common GI complaint in children with autism is constipation, but other intestinal problems, such as acid reflux, abdominal pain and diarrhea, can occur. If a patient is having difficulty sleeping, controlling his or her behavior at school or at home, having unexplained changes in behaviors or having any behavioral issues that are not responding to behavioral interventions or existing medication adjustments, pediatricians should assess the patient for GI problems using the following steps:

  • First, ask about any changes in behavior and sleeping habits. These may be signs of GI difficulties. For example, does the child get frustrated when brought to the toilet? Does behavior seem to improve after a bowel movement?
  • Next, get specific. Ask caregivers in-depth questions about toilet patterns, frequency, consistency and toileting experiences. Inquire about rubbing of the stomach or chest, burping, bad breath suggestive of reflux and other common indicators of GI troubles. For example, does the child push or strain to have a bowel movement?
  • If the first two steps suggest an underlying GI problem, empiric treatment of the suspected condition can help determine if a GI problem is contributing to changes in behavior. Begin with over-the-counter or prescription medical treatment for the suspected problem. If after treatment is initiated the behavioral issues appear to resolve, a GI problem was the likely cause of the behavioral disturbances.

Treating GI Problems in Patients with Autism
Although the GI issues in children with autism are not necessarily different from those of other pediatric patients, the standard protocols for GI problems do not always work with autistic patients. Current pediatric GI treatment recommendations are based on non-autistic children, and autistic children do not always respond the same way to such treatments, either behaviorally or medically.

One of the challenging things about working with this population is simply trying to find a medical regimen that works for them. Many children with autism have sensory and control issues and do not want to take medications or follow new routines. Work with patients’ families and caregivers to identify an approach that meets their needs, keeping in mind that it may take a while to find the strategy that works.

Following initiation of a treatment plan, check in with the family to see if the patient has responded to direct treatment of the GI complaint. Determine whether behavior improved, sleep difficulties resolved and if the patient appears to have more normal bowel movements. When more complicated GI issues are suspected or when pediatricians do not feel comfortable treating the issue without consultation, the patient can be referred to a specialist for medical evaluation and behavioral therapy. Families only seeking assistance with toilet training should be informed that many children with autism must first resolve behavioral issues before toileting habits can be improved. In some cases, progress after treatment initiation is swift and significant; in others, it occurs slowly, over a period of a year or more.

Working to Improve Outcomes
Addressing GI issues in this population would not be complete without searching for ways to improve diagnosis and treatment for all autistic children. This is why patients with autism at the GI Clinic at Nationwide Children’s Hospital are followed over time to track treatment success rates, the number and characteristics of children who respond to treatments and possible predictive factors. The eventual goal is to use this data to identify which patients are most likely to respond to treatment. In time, this and similar research may provide physicians with a stepwise practice tool to address GI issues in children with autism.

Just collecting information on the prevalence of certain GI problems and the effectiveness of treatments—both behavioral and medical—will help specialists and pediatricians better identify problems and take care of patients with autism in the future. This is especially important because of the high need for responsive, precise treatment of GI issues in this population. While it will be some time before these efforts yield information to guide patient care, pediatricians can still make significant progress with patients by recognizing that GI issues are very common in children with autism and may contribute to changes in behavior. Following the steps outlined here can go a long way toward improving the lives of children with autism and their caregivers.

What happens when a patient is referred to Nationwide Children’s Hospital?
When a pediatrician cannot find an effective treatment or is uncertain of how to proceed, the GI Clinic and the Bowel Management Clinic, cooperative specialty clinics at Nationwide Children’s, can help. Specialists and staff at these clinics are accustomed to treating coexisting conditions and have experience working with children with autism.

After the Referral
Patients and their families meet Dr. Kent Williams and his staff in the GI Clinic. Families can expect:

  • Questions about behavior, toileting habits and attempted treatments
  • Diagnostic testing to determine the true cause of the problem
  • Medical treatment, if necessary

After Medical Evaluation and Treatment
Some patients may benefit from behavioral therapy in the Bowel Management Clinic, which addresses behavioral and cognitive issues surrounding autism and GI problems. Families can expect:

  • An initial meeting to set realistic expectations and assess opportunities for intervention
  • Evaluation of sensory and anxiety issues to enable treatment success
  • Consultation with specialists to build a customized behavioral intervention plan
  • Toilet training or reward system programs

Related publications
Furuta GT, Williams K, Kooros K, Kaul A, Panzer R, Coury DL, Fuchs G. Management of constipation in children and adolescents with autism spectrum disorders. Pediatrics. 2012 Nov, 130(2);S98-105. PMID: 23118260.

Gorrindo P, Williams K, Lee EB, Walker LS, McGrew SG, Levitt P. Gastrointestinal dysfunction in autism: parental report, clinical evaluation, and associated factors. Autism Research. 2012 Apr, 5(2):101-8. PMID: 22511450.

About the author
Kent Williams, MD, is a pediatric gastroenterologist at Nationwide Children’s Hospital and an assistant professor of clinical pediatrics at The Ohio State University College of Medicine. Dr. Williams’ clinical interests involve all aspects of pediatric gastroenterology, with a special interest in GI disorders in children with autism spectrum disorders. As an investigator in The Research Institute at Nationwide Children’s and OSU, he conducts basic and translational research into the mechanisms that cause functional gastrointestinal disorders, such as abdominal pain, constipation and reflux, in children with autism. In 2012, Dr. Williams became co-chair of the Autism Treatment Network’s gastroenterology committee, a national work group that is responsible for establishing guidelines and recommendations.

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