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Nutrition Challenges and Strategies for Kids With Autism
By Maura Keller
Who doesn't worry about food? We all do at times. But parents of children with autism spectrum disorders (ASDs) live with an ongoing challenge of ensuring their child with special needs is getting the nutrition he or she requires. And for many families, that’s easier said than done.
That’s where RDs come in. When they combine nutritional know-how with a solid understanding of autism, RDs can make nutritional inroads with children with an ASD.
Challenges Aplenty
According to Judy Converse, MPH, RD, LD, author of Special Needs Kids Eat Right, the biggest challenge facing RDs and the parents of kids with autism is the misinformation and misconceptions surrounding autism.
“There are plenty of anecdotes, case examples, and some published data suggesting that kids with autism often have serious nutrition problems, but we don't have a standard in place that screens for these,” Converse says. “They're left untreated. This leaves these kids with nutrition deficits that interfere with learning, cognitive ability, behavior, sleep, mood, and well-being—precisely the areas in which they can be most challenged.”
But because the referrals and support aren’t available, parents of kids with autism are often left to navigate nutrition on their own. Converse stresses the need to educate the psychiatric, neurology, and developmental pediatrics communities so they refer children with autism for nutrition screening and care.
“There is a shortage of professionals who really know child nutrition and know the issues of autism—the physiological as well as the developmental ones,” Converse says. “Many doctors are still telling families that nutrition tools don't do any good. So parents dive in and try special diets, supplements, all kinds of ‘pell-mell’ tactics, which can fail if unfocused or if they are the wrong strategies for that child. Parents need guidance; they need an expert to identify, sort, and prioritize the nutrition findings.”
Another challenge is that kids with autism, when untreated for the nutrition piece of the puzzle, can have incredibly rigid diets and may eat only two or three foods.
As Sue Loring, director of the Autism Resource Center of Central Massachusetts, explains, many children with autism self-limit food choices, leading to nutritional deficiencies that then must be addressed with supplementation. For example, a child who refuses to eat meat may develop iron-deficiency anemia. A subset of children with ASDs also have rather severe digestive disorders such as gastroesophageal reflux disease, esophagitis, and celiac disease.
“Without the means to communicate their symptoms, they often react to the pain through behavior issues, and behavioral interventions to address the behaviors may fail as the root cause for the behavior is a somatic distress which goes untreated,” Loring says.
Children with an ASD have additional issues that impact their ability or willingness to accept foods, including sensory processing issues. “All five senses are involved in eating. This can create many difficulties in ensuring adequate nutrition,” Loring says. “Children with ASD may have issues with the smell, appearance, texture, and sound of a food as they chew it, which can impact their willingness to accept a new food.” Oral motor issues can also impact a child’s ability to chew food adequately to prepare for swallowing, or a bad experience with a food, such as a choking episode, may lead to refusal to eat that food again.
Coping Strategies
RDs play a vital role in the nutritional care of kids with autism. “If the child has feeding issues, then the registered dietitian should be working as part of an interdisciplinary team to address the root cause of the problems,” says Heather Mangieri, MS, RD, CSSD, LDN, a spokesperson for the American Dietetic Association, owner of Nutrition CheckUp in Pittsburgh, and mom of a child with severe autism. “A speech-language pathologist, occupational therapist, and behavioral specialist all need to work together to address the complexity of these feeding issues and come up with a plan to treat the child on a case-by-case basis.”
Areva Martin, author of The Everyday Advocate: Standing Up for Your Child With Autism or Other Special Needs, says the biggest mistake RDs make is assuming that all kids with autism are alike because they are not.
“Autism is a spectrum disorder, and each child on the spectrum has different dietary needs depending on a lot of factors, including comorbid conditions such as epilepsy,” Martin says. “Many children also take a variety of medications for various conditions, which must be taken into consideration when developing a nutrition plan. The key is teamwork and communication.”
Mangieri says there is limited evidence for dietary interventions for children with autism. Most of the dietary restrictions that are attempted are based on anecdotal evidence and not based on sound scientific research.
The most popular dietary restrictions include the elimination of gluten and casein from the diet. “Though not scientifically proven, many families will report positive outcomes from the use of the gluten-free, casein-free [GFCF] diet, while others report no improvements,” Mangieri says. “Families that choose to start a GFCF diet will benefit from a registered dietitian to ensure diet adequacy because children with autism are at an increased risk for nutritional deficiencies. Registered dietitians should also evaluate the need for a vitamin/mineral supplement and omega-3 fatty acids.”
When treating kids with autism, RDs need to consider everything—from inflammation to mineral imbalances to bowel infections and poor total food intakes to impaired digestion.
“And be patient. Changing a child's diet as dramatically as may be warranted is a process,” Converse says. “The child will go through some rough patches typically. You have to be ready to help families ride those out. Have confidence in your skill set. When the nutrition problems are corrected, these children start to eat, sleep, eliminate, communicate, and behave more normally. That's the ultimate benchmark that you are doing your job.”
— Maura Keller is a Minneapolis-based writer and editor.