Norra MacReady

May 26, 2011

May 26, 2011 (San Diego, California) — Nearly 1 in 5 children with autism spectrum disorders (ASDs) are placed on special diets by parents as a potential treatment, new research suggests.

A study presented here at the International Meeting for Autism Research 10th Anniversary Meeting exploring the use of complementary and alternative medicine (CAM) by this patient population showed dietary treatments were the most common.

"Given the prevalence of dietary intervention for symptoms of ASD, healthcare providers need to specifically elicit a history of dietary and supplement use and be familiar with the nutritional needs of children in whom gluten and casein are eliminated," said senior investigator Daniel Coury, MD, chief of the Section of Developmental and Behavioral Paediatrics, Nationwide Children's Hospital, in Columbus, Ohio.

According to data from the National Center for Health Statistics, about 38% of American adults and 12% of American children use some type of CAM, said Dr. Coury.

Use is even higher among people with chronic illnesses, especially for "long-lasting problems that conventional medicine hasn't adequately treated, such as arthritis, back pain, and sleep problems."

However, little is known about CAM use among children with ASDs, largely because parents often do not share this information with their children's physicians, Dr. Coury said.

In addition, physicians tend not to ask about CAM therapies; parents may think physicians may not know much about CAM, or they may not think disclosure is necessary. Many parents also fear physicians may disapprove of these treatments, whereas for others the appointment may simply be too short to bring it up.

Gluten-Free, Casein-Free Diets Most Common

As a result, say investigators, "the persistent or continuing use of CAM in children with ASDs has not been well described." To learn more about patients' experiences with CAM and the characteristics associated with CAM use, the investigators turned to a database maintained by the Autism Treatment Network (ATN), a large registry of ASD patients 2 to 18 years of age.

The data came from a battery of forms and questionnaires completed by parents and clinicians at the time of the child's enrolment in the ATN and updated annually. The database also included the children's medical history and evaluation data.

Of 2489 children enrolled in the database at baseline, 449 (18%) reported being on a special diet. Gluten-free and casein-free diets were the most common, with each cited by 55% of patients using dietary therapy. Fewer patients were on diets described as dye free, preservative free, low sugar, or restricted in corn or soy.

Other types of CAM, such as melatonin, dietary supplements, antifungal products, and glutathione, were used infrequently and were not included in the analysis.

So far, 1-year follow-up data are available for 568 children in the database, of whom 110 (19%) are on some type of special diet. It is not known how many of these children were on the diets originally, said Dr. Coury.

However, there was little change in the percentages of children on special diets between baseline and 1 year: 55% of those patients were using gluten-free or casein-free diets at first, compared with 50% and 49% at 1 year, respectively. The percentage of children on other types of diets increased from 54% at baseline to 61% at 1 year.

Difficult to Follow

These changes suggest there is a subgroup that is not finding a benefit from the gluten-free or casein-free diet or finding these diets difficult to follow. They are intensive diets that require a fair amount of manipulation and, often, changes throughout the household, said Dr. Coury.

Thirty-six children who were on dietary treatment at baseline were no longer on that treatment at the 1-year follow-up. On the other hand, 45 children (8%) who were not on a special diet when they enrolled in the ATN were on one by the annual visit, so "we do see that families are turning toward dietary treatments."

Limitations to this study include the relatively small number of children reporting the use of special diets at enrollment, as well as 1-year follow-up data on only 568 children. These data may not be representative of the complete ATN sample or of typical families that have a child with an ASD.

"The people in the ATN database may be more hesitant to share the use of CAM with clinicians, or they may be less likely to use CAM to begin with," Dr. Coury explained.

Still, he said, "these data show that there is a group of families that are continuing to search for better treatments than what we are providing for them or looking for ways they can help their children even more."

No Surprise

The findings come as no surprise to at least 1 expert.

We know that a lot of families do try CAM treatments for their children with an ASD," said Larry Yin, MD, medical director of the Boone Fetter Autism Clinic at Children's Hospital Los Angeles, California, which participates in the ATN database. He warned that parents often get their CAM information from word-of-mouth or the Internet, so it may not always be backed by good research.

"I usually tell parents to be cautious and to understand that some of these diets have not been proven to work. The data currently suggest that the role of diets in the treatment of autism is not really that strong," said Dr. Yin, who was not involved in this study.

He also warned that these diets can be costly and labor intensive "and potentially disrupt the whole family environment, so they should consider that aspect of it before proceeding."

"Tried-and-true" approaches, such as early intervention and therapy, have the most impact on the core symptoms of ASDs," Dr. Yin said.

Neither Dr. Coury nor Dr. Yin has disclosed any relevant financial relationships.

International Meeting for Autism Research (IMFAR) 10th Anniversary Meeting: Abstract 137.007. Presented May 14, 2011.

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