Nutrition and Autism
Are They Linked?
Today’s Dietitian
By Kate Jackson
Vol. 7, No. 1, p. 31

Many are skeptical, but others insist that diet makes a difference in autistic individuals.

Autism is a developmental disorder that lasts a lifetime and impedes an individual’s ability to communicate and function socially. Its cause is unknown and treatment remains problematic. Children afflicted with autism appear to suffer from gastrointestinal problems and allergies at a rate that outpaces that of children who do not have autism—a fact that has prompted research into the diet-autism link and inspired interest in exploring the use of nutrition therapy to treat the disorder.

There’s little dispute that parents of children with autism are often frustrated in their efforts to feed their children and ensure that they’re well-nourished. “There’s a problem with diet and autistic children in general,” says Amy Lanou, PhD, nutrition director for the Physicians Community For Responsible Medicine. “They tend to be even more difficult to feed than healthy children and may not respond easily to difference or change.”

The facts about diet and autism are unclear, but there’s no shortage of theories. Some studies, for example, have suggested that there are differences in opiode chemistry in people with autism. “The opiate peptides may mediate certain aspects of the syndrome, probably through gastrointestinal differences or disorders,” explains Lanou.

It’s an intriguing line of research, she adds, in light of the number of foods that cause an opiatelike response when consumed. There’s a morphinelike substance in milk, for example, perhaps so that infants or animals are drawn to mothers’ milk. Such substances are also found in other dairy products, chocolate, and some sweets. People with autism may process these opiates somewhat differently, which may account for the number of digestive disorders from which they tend to suffer. Opiates commonly produce constipation, for example—which is frequently a complaint associated with autism. Therefore, it’s speculated that eliminating or decreasing these foods might be beneficial for individuals with autism.

Additionally, researchers have theorized that consumption of an excess of dietary iron—which causes a hyperactive immune system—is responsible for increased rates of autism and allergies. Also the subject of studies and speculation are enzyme therapy, vitamin therapy, and the ketogenic diet.

The bulk of research and the area of greatest interest among parents and dietitians, however, concerns the beneficial effect of eliminating gluten and casein from the diets of individuals with autism. Support for such a diet has come from recent research pointing to the presence of pathology in the gastrointestinal tracts of children with autism, the degree of which correlates to the severity of autistic symptoms. The problem is believed to be a leaky gut, and absorption difficulties are thought to influence brain function. Barb Linneman, MS, RD, LD (www.pedsinc.com), who commonly works with the parents of children with autism, recently attended a conference at which discussion among pediatric gastroenterologists appeared to offer evidence for that suggestion—the fact that eosinophil levels in children with autism are elevated and that improvement occurs when gluten and casein are removed from their diets.

THE EXPERIENCE
Despite the lack of hard science to support an autism-diet link, many dietitians suggest that their experience is more compelling and insist that nutrition interventions make a significant difference in their clients’ lives—a claim well-supported by parents. Linneman has worked with high-risk infants and children with disabilities in private practice for roughly nine years. She believes that while autism is a neurological disorder, many people afflicted clearly suffer from food allergies or sensitivities, which in turn exacerbate behavior issues. It stands to reason, she suggests— and her experience indicates—that assistance with food problems is likely to lead to improvement in the behavioral issues. The practical experience of many dietitians and parents points to a similar conclusion.

Most healthcare providers, however,are not convinced about or not interested in nutrition interventions. According to Judy Converse, MPH, RD, LD (www.nutritioncare.com), a private practitioner who specializes in working with youngsters with developmental disorders, many children with autism slip through the cracks of the healthcare system suffering from a host of problems that in different degrees may be responsive to nutrition interventions, yet few professionals are prepared to provide adequate assistance. Many, she says, are even hostile to the idea of nutrition therapy.

In a system in which primary care and pediatric providers are often ill-informed about nutrition, dietetics professionals can play a pivotal role in the well-being of children with development disorders such as autism. By educating other healthcare professionals about the importance of nutrition therapy, ensuring that children are adequately assessed and appropriately referred, helping clients implement and maintain a health-promoting diet, and moving toward the forefront of research, dietitians can take the lead in reducing the burden of autism and improving the health of afflicted children and adults.

THE NUTRITION ASSESSMENT
While Converse and others in the field point to compelling anecdotal support for the gluten-free, casein-free diet, dietitians are quick to point out that there’s no diet that’s right for all children with autism. Linneman is aware of dietitians who have clients who have thrived on the gluten-free, casein-free diet and others for whom that diet produces no changes whatsoever. She and other dietitians expert in this area recommend a thorough gastroenterological workup and food allergy testing for individuals with autism—a step that should precede any change in diet. Ideally, she says, pediatric allergists, gastroenterologists, and dietitians will then collaborate in patient care.

Says Marilyn K. Tanner, MHS, RD, LD, American Dietetic Association spokesperson and pediatric dietitian/study coordinator in the department of pediatric endocrinology and metabolism, Patient Oriented Research Unit, at the Washington University School of Medicine, St. Louis, it’s important to remember that each child is different and must be evaluated on a case-by-case basis.

When Converse assesses children with autism, she asks their parents to bring several items to the appointment: the child’s growth chart from birth, a typical day’s food record, and a history form she posts on her Web site that gathers information about medical history and history of infections. She reviews the patient’s early history in great detail, she says, because it helps her develop a picture of the child’s problem from infancy and may indicate whether a gut problem was present from birth or acquired over months and years. She refers the patient for laboratory studies that might reveal, among other things, antigenic responses to foods other than classic allergens. “A child [who] comes in with irritable, mucousy stools, eczema, and poor gain probably has a lot of inflammation in the gut from foods,” she says. These foods may not produce hives, but gut symptoms may indicate sensitivities that blood testing may reveal. In the course of her assessment, she may also request that the parents collect stool or urine samples for analysis.

DIETARY INTERVENTION: DOING NO HARM
Based on the results of her assessment and laboratory testing, Converse will create a protocol that parents can follow to properly feed their children and replenish nutrients that are lacking as a result of poor diet or malabsorption issues. She’ll generally put children on nutritional supplements tailored to their special needs. Because soy milk is likely to be antigenic in children who have problems with casein, she often recommends special formulas, especially for those with allergic responses to food.

If it’s warranted by the individual situation, she may encourage a gluten-free, casein-free diet. Whether or not research at this point confirms the value of such an approach, the diet—if planned and monitored by a dietitian—is healthy and poses no risk, says Lanou. She points to research that demonstrates no increased nutrient risks or inadequacies among autistic children on the diet. In the study, children on the gluten-free, casein-free diet had fewer nutritional deficiencies than those not on the diet. Her only caution is that children on a dairy-free diet receive alternative and adequate sources of calcium.

Linneman observes that parents at their wit’s end with children who have chronic constipation or atopic reactions are going to give the diet a try whether it’s recommended or criticized. Dietitians, she says, should therefore be part of that process to ensure that these children are well-nourished. Parents, she observes, will try nontraditional approaches if they believe they may benefit their children, and far from being discouraged, they need to be supported by dietitians and provided with information to eliminate risk and prevent harm.

Because routine and familiarity are important to people with autism, Lanou recommends introducing change slowly. “Don’t just all of a sudden take away the foods they’re familiar with, never show them those again, and introduce all brand-new foods.” Instead, she advises, use a step-wise or graded approach: “Work foods out of the diet a few at a time or find replacements that are similar in appearance, feel, and taste so that the change won’t be shocking.”

As important as individual assessment, says Converse, is generous monitoring of patients as well as parents’ efforts when necessary. Some parents are able to implement the protocols easily, but others need far more assistance and follow up. “Even when I monitor closely—for example, as often as every three or four weeks—it’s not unusual for patients’ diets to regress to something quite bad. It’s not that the parents aren’t trying, but there are often underlying issues that make the transition to a better diet difficult, so we troubleshoot those problems,” she says. “It’s an ongoing process.”

PUTTING DIETITIANS IN THE PICTURE
In her work with a pediatric population, Converse says she hears a great deal of discouraging feedback from client families about dietitians at major medical centers in her region who, as a result of heavy and diverse caseloads, aren’t able to focus on the needs of children with developmental disorders such as autism. Others with greater interest, time, and training are able to acknowledge what she calls the “mundane nutrition science that explains why nutrition intervention for autism can really help kids.” RDs are missing an opportunity, she insists, noting that most of the providers ignore the nutritional needs of this special population. “So many kids with really active signs for marginal nutrition status just march in and out of their offices and no one is the wiser,” she says.

Poor diet is rampant among children with developmental issues, she continues, and providers aren’t monitoring them. As a result, frustrated or desperate parents often will try diets they read about on the Internet. Their children, says Converse, tend to suffer. “The worst-case scenario for me is to meet a child whose parents have tried to implement a diet without guidance. Those kids have the worst diets,” she insists. “They’re on food intakes that a typical child couldn’t function on. They need to be monitored and placed on managed programs. They can’t just randomly be experimenting with these diets, and that’s what’s happening.”

Almost as bad, she suggests, are the well-intentioned efforts of those rare providers who do try to incorporate nutrition information and counseling into their treatment but who do so without expertise—doctors and nurses with little, if any, nutrition care training. “They’re making some pretty bad blunders, so trained dietitians need to be on the team,” Converse says.

To work with this population, dietitians, insists Linneman, must become more experienced and educated in the area of allergy and food intolerance and take an aggressive role in educating other healthcare providers, as well as parents and clients, about the role nutrition may play.

In addition to helping parents and providers understand the importance of nutrition and devise and implement appropriate strategies, dietitians have a role to play in helping uncover the mechanisms by which nutrition influences autism symptoms. Although studies and patient experience point to the efficacy of gluten-free, casein-free diets for many individuals with autism, “We’ve got a good amount of work to do in this area,” says Lanou, pointing toward the need for a large clinical trial.

Noting the lack of solid scientific research documenting a link between nutrition and autism, Tanner encourages dietitians to take it upon themselves to fill in the gaps and begin doing that research themselves. It’s a wonderful way, she suggests, to get a community of people working toward increasing knowledge in this area. As diagnoses of autism are on the rise, practitioners wishing to work with this population need to not only stay current with the research but also move ahead of it, says Linnemann, who looks forward to a time when dietitians step ahead to take a more significant role in treatment, focusing their energies on children with special health needs who are at increased risk for nutritional issues.

Says Converse, “There is a community of providers who are actively trying to address the needs of those with autism, but they don’t understand the contributions dietitians can make.” Without nutrition assessment and monitoring, she insists, parents often turn to esoteric medical treatments and bizarre diets, and the children end up with eating habits that only worsen their behavior and general health. The provider community, she speculates, is waiting for hard and fast evidence that diet makes a difference, but the kind of double-blind, placebo-controlled diet studies that might satisfy their need for proof are impossible.

In the absence of such rigorous research, empirical and anecdotal evidence indicate that dietary assessment and monitoring make a difference in the lives of children with autism. “We have early intervention programs in the United States because we know nutrition matters in the early years,” says Converse. Nutrition therapy with children with autism, she maintains, “is nothing more than applying that belief aggressively to kids who need it the most.” She says she’s been beating the drums about this since she began practicing, and she’s eager for dietitians to pick up the beat.

— Kate Jackson is a staff writer for Today’s Dietitian.

Subscribe to Today's Dietitian Magazine!