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Help Sought for Adult with Autism and Reflux

“My adult autistic son has been spitting up. It seems to be triggered by anxiety, will last a day and then stop as quickly as it started. He’s on medication for gastric reflux and had endoscopies to open up a narrow esophagus. He also takes medication for seizures and has a hiatal hernia. Any suggestions?” 

This week’s “Food for Thought” answer is from gastroenterologist Kent Williams, of Nationwide Children’s Hospital, in Columbus, Ohio — a member center of the Autism Speaks Autism Treatment Network (ATN).

It sounds like your son suffers from multiple issues related to gastroesophageal reflux disease (GERD) and/or rumination syndrome. I’ve frequently dealt with both in my Autism GI Clinic.

 GERD occurs commonly in the general population, including individuals with autism.

Rumination syndrome refers to regurgitation of stomach contents. Some individuals will spit the contents out. Others will re-chew and swallow. Once, we thought that rumination was primarily a problem for infants and individuals with severe developmental delays. Now we know it occurs among individuals of all ages and ability levels. It appears to be particularly common among those who struggle with stress and anxiety – as is true of many individuals with autism. Diagnosing rumination syndrome can be challenging. Often, it requires a GI specialist familiar with its subtle signs in combination with tests to evaluate the muscle activity in the esophagus and stomach.

You also mention that your son has a hiatal hernia. For readers who aren’t familiar with the condition, hiatal hernia involves organs protruding (herniating) from the abdominal cavity into the chest cavity through an opening (hiatus) in the diaphragm. In your son’s case, I suspect this involves part of the stomach protruding through the hole around the esophagus, or “swallowing tube.” This condition often produces GERD.

The good news is that GERD caused by a hiatal hernia can usually be successfully treated with medications and/or lifestyle changes, as I’ll explain below.

Team approach to complex issues
If you haven’t already, I strongly suggest finding a gastroenterology (GI) specialist, ideally someone familiar with autism. In treating such complex issues in an individual who has autism, I often seek input from other specialists such as a nutritionist, behavioral therapist and surgeon. This is one of the great advantages of seeking help at an Autism Speaks ATN center – where we emphasize comprehensive “whole person” care.

Lifestyle changes for GERD
As for strategies you can try at home, let’s start with discussing your son’s GERD, as this may go far in relieving his spitting up. Several lifestyle changes can help.

First, I encourage avoiding late-night meals. This ensures that when your son lies down for sleep, there’s less stomach contents to reflux into his throat and mouth.

Second, I encourage avoiding fatty meals since they can delay stomach emptying.

Third, if your son is overweight, I strongly recommend a weight loss plan that includes a healthy diet and exercise. This is one of the most effective steps he can take to relieve GERD. If your son lives at home, the effort should involve the whole family making a commitment to eat healthier. If he lives independently or in a residential facility, I recommend engaging the staff around mealtime choices. I generally recommend that my patients and their families meet with a nutritionist or dietician for personal diet counseling.

Changing eating habits can prove particularly challenging when autism-related food issues include a reluctance to try new foods. In these cases, a team approach with both a nutritionist and a behavioral therapist may be needed. (Also see “Encouraging Picky Eaters with Autism to Try New Foods.”)

Medications for GERD
A variety of medications can help treat GERD. You mention that your son is already taking one or more. In my practice, I often switch medications or add another medication, when I see reflux that’s not adequately under control. Again, this will require a good specialist who knows your son and his complex issues.

In some cases, medications and lifestyle changes aren’t enough. You mentioned that your son’s esophagus had narrowed and required numerous endoscopies to widen it. Often, such narrowing involves scarring caused by the stomach acid that chronically backs up in the esophagus.

Acid reflux tends to be painful – at least early on. But unfortunately, many children and adults with autism aren’t able to communicate their discomfort. So the condition too-often progresses to the point where we see significant scarring and narrowing. Eventually, the damage is so severe that the individual may not be able to swallow food.

This is when it may be important to consider surgery or additional surgery. This isn’t a simple decision. Surgery involves its own risks. So the decision should be made with input from a qualified gastroenterologist and surgeon. They need to make sure that the benefits of the surgery outweigh the risks, and that the surgery is being done for the right reasons. I recommend getting a second opinion before undergoing any surgical intervention.

Rumination disorder
Because anxiety appears to worsen your son’s spitting up, I recommend that he be evaluated for rumination syndrome, which I mentioned briefly above. This disorder can mimic GERD or make it worse.

In my experience, it's common for a patient with autism to suffer from both GERD and rumination syndrome. When this occurs, both need to be treated. While a GI specialist can address both issues, rumination syndrome often involves anxiety or obsessive-compulsive behaviors. For this reason, I typically enlist the help of a psychologist or psychiatrist to address behavioral and emotional issues

Achalasia
Another, less common condition should be considered with the help of a GI specialist. In achalasia, the muscles in the esophagus fail to relax as they should. As a result, food doesn’t pass easily from the esophagus into the stomach. In addition to spitting up, symptoms can include difficulty swallowing, coughing, recurring pneumonia and vomiting.

Typically, an X-ray shows the lower part of the esophagus to be narrowed. But the gold standard for diagnosing this condition is a motility study. This involves placing a catheter in the esophagus to measure pressure changes associated with muscle contraction. A motility expert places the catheter and interprets the results. As you can imagine, placing a catheter in a patient with autism can be very challenging. While not easy, the chances for successful evaluation improves dramatically if the specialist has experience working with individuals who have special needs.

If tests indicate surgery is necessary, a surgeon may open up the muscles that surround the esophagus, to allow food to easily pass into the stomach. 

I hope this information is helpful. Please let us know how you and your son are doing by emailing us again at FoodforThought@autismspeaks.org.

Need more help with issues around food, eating behaviors or special diets? Send your questions to FoodForThought@AutismSpeaks.org.

Also see the Autism Speaks ATN/AIR-P Guide to Exploring Feeding Behavior in Autism. Research suggests that more than half of individuals with an autism struggle with food issues that can affect health and emotional wellbeing. This tool kit provides guidance from experts in the Autism Speaks Autism Treatment Network.

 

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.