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Your ATN@Work: Dietary guidelines for kids with autism and GI distress

By registered dietitian nutritionist Patricia Novak, of Children’s Hospital Los Angeles. The hospital is one of 14 centers in the Autism Speaks Autism Treatment Network (ATN).

As a dietitian working with children with autism, I frequently meet with families to help with issues such as food aversions, food intolerances, food allergies and problems with weight gain – either too little or too much.

During these assessments, it frequently becomes clear that the child has one or more significant gastrointestinal (GI) problems such as constipation, loose stools or reflux. Often, these GI issues turn out to be a major cause of the child’s dietary challenges. In other words – if a child’s tummy hurts, the diet suffers.

As many readers of this column know well, GI issues and feeding challenges are very common among children with autism. Unfortunately, the link between these two major issues often goes unrecognized by the healthcare professionals caring for children – or adults – with autism.

The observable symptoms of GI distress in a patient with autism can look very different from those in someone unaffected by a developmental disorder. For example, a child with autism may respond to GI discomfort with increased social withdrawal or aggression, sleep difficulties, food refusal or increasingly narrow food choices. He or she may not be able to say “my stomach hurts!”

Too often, healthcare professionals fail to recognize and treat the GI conditions beneath the feeding issues or the dietary issues behind the GI problems. Too often, they prescribe treatments designed for short-term use – like medications for constipation, diarrhea or reflux. These end up being used long term while mealtime challenges and tummy aches continue.

Understandably, many parents try a variety of special diets they’ve learned about outside the doctor’s office. Sometimes these diets help. Other times they produce more GI issues. And sometimes they lead to vitamin and/or mineral deficiencies.

In search of real solutions and guidance for medical professionals, I recently joined five other dietitians with autism expertise for a two-day workshop. Specifically, we wanted to use our expertise to help pediatricians, family doctors and dietitians improve how they identify gastrointestinal issues in children with autism and give them guidance for addressing these challenges with dietary approaches.

Guidelines for healthcare providers
The Journal of the Academy of Nutrition and Dietetics has now published our report: “Nutrition Management of Gastrointestinal Symptoms in Children with Autism Spectrum Disorder: Guideline from an Expert Panel.”

The guide includes a decision-making flowchart, detailed description of intervention steps and case studies illustrating how to use dietary and nutritional approaches to manage GI issues.

I think about the flow charts in our report as road maps that allow the clinician to choose which road to follow based on the child and family’s experience. Some treatment pathways meander. Others are direct. In either case, we want the path to lead to a resolution of a child’s GI distress with the child enthusiastically eating a healthy diet.

Regardless of the path taken, our guidelines recommend that the journey include a registered dietitian. A dietitian has the training to sort out if a child’s diet is contributing to his or her GI problems or whether the GI problem is limiting the diet. We’re also trained to identify when it’s appropriate to bring in additional specialists.

Many pathways to success
Take, for example, constipation, the most common GI problem among children with autism. The treatment route might begin with the parents bringing their child to a pediatrician. The parents may not even mention the constipation at first. They're worried about poor weight gain and a recent increase in social withdrawal and occasional aggressive behavior. The child is also seeing an occupational therapist to help expand his diet beyond pasta, crackers and chicken nuggets. 

When the pediatrician asks about bowel movements, the parents mention that he often seems uncomfortable on the toilet and has a bowel movement only two or three times a week. A red flag goes up as they all realize that the changes in behavior, picky eating and constipation nat all be related. The doctor refers them to a dietitian.

That dietitian sees that this child hasn’t been getting enough fiber, or “roughage,” since the family recently changed to a gluten-free diet. That may well be the cause for the constipation – and perhaps the pain behind both the picky eating and acting out.

The dietitian helps the family identify gluten-free products with higher fiber content. The constipation resolves. Weight increases to a healthy level, and the child’s behavior improves.

Addressing food aversions
In another very common scenario, the dietitian recognizes that the lack of fiber stems from a narrow diet high in processed foods and low in whole grains and fresh fruits and vegetables. In this scenario, the dietitian suggests both a short-term solution – a fiber supplement – and a long-term solution – feeding therapy to help the child get comfortable eating fruits, vegetables and other fiber-rich foods.

The dietitian consults with the feeding therapist with suggestions of appropriate food choices that will add more fiber and nutrition to the child’s diet. They work together to consider the child’s sensory issues and therapy goals when choosing the foods to introduce.

Diving deeper to find the problem
Let’s consider yet another path. What if the nutrition assessment shows that the child is eating plenty of fiber and drinking plenty of water? This suggests that diet isn’t causing the constipation. On this route, the family and dietitian work with a larger medical team to evaluate whether food is moving normally through the GI tract. Tests may also include evaluation for underlying medical conditions such as low thyroid levels or celiac disease.

At the same time, they may explore whether the constipation results from “withholding.” That’s when a child resists having bowel movements. As a result, the stool becomes hard and more difficult to pass. This, too, is common among children – and some adults – who have autism. The good news is that occupational and behavioral therapists have practical strategies to improve bowel habits.

A happier, healthier child
Research has made clear that resolving the GI issues commonly associated with autism also improves sleep, behavior, diet and overall quality of life. We know these issues are best addressed with an evaluation of the whole child – including the wide range of factors that can affect the child’s diet and digestion.

We hope our newly published “roadmap” can help clinicians follow each child’s pathway to health and happiness. You can download a sample flowchart for evaluating and treating constipation here.

* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you 
* Explore our archive of ATN expert-advice blogs and news stories 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.