A Q&A With Dr. Danielle Dolezal
There are few challenges that generate as much concern and frustration for parents as feeding issues. Unfortunately, for children with autism spectrum disorders (ASD), these problems are quite common. Clinical research suggests 46% to 89% of all children with ASD struggle with feeding problems.
While patients may benefit from a referral to the Pediatric Feeding Program at Seattle Children’s Autism Center, qualified specialists are not always immediately available. In the meantime, Dr. Danielle Dolezal, clinical supervisor of the Pediatric Feeding Program, offers the following advice to primary care providers who want to help waiting families.
Thank you to Dr. Wendy Sue Swanson, a pediatrician at The Everett Clinic in Mill Creek, a member of Children’s medical staff, chief of digital innovation for Children’s and author of the Seattle Mama Doc blog, for submitting these questions.
Why do so many children with ASD suffer from feeding problems?
There are many qualities of children with ASD that could cause feeding problems, including: sensory impairments; restricted interests and insistence on sameness; anxiety about changes to routines or novel situations; ritualized behavior; increased focus on details of food presentation; impulsivity and challenging behavior; challenges with social skills and decreased responsiveness to the social rewards of eating; oral-motor skill deficits, biologic food intolerances or history of gastrointestinal discomfort; disrupted eating patterns; responding to internal states of hunger; and/or aversive learning events paired with eating, such as gagging, choking or vomiting episodes.
What are the common feeding challenges in children with ASD and are there typical ages when they occur?
Parents also describe increased refusal of foods, insistence on particular preparation of foods, demands for specific utensils, consumption of a limited range of foods and preference for lower textured foods.
There is no specific evidence on the typical ages when feeding challenges peak. However, it is common for parents to report an emergence of food refusal during the transition to solid food or shortly thereafter (12 to 24 months of age). Additionally, parents often report changes in their children’s eating habits just before the emergence of symptoms of ASD.
What early interventions can prevent feeding challenges from expanding to larger issues?
Pediatricians should routinely assess children with ASD for feeding challenges. Special attention should be paid to children with medical conditions which might adversely affect the respiratory, gastrointestinal and central nervous systems, as these could lead to challenges in normal feeding development.
Additionally, research suggests providers need to look beyond anthropometric parameters to assess health status and incorporate nutritional assessment as part of routine medical care in children with ASD. Significant feeding issues, in these patients, often don’t result in abnormalities on typical growth parameters. Thus, relying exclusively on anthropometric parameters may in fact mask underlying nutritional deficits and prevent referrals for treatment. When researchers have looked closer at the nutrient intake in children with ASD, they’ve seen significant specific deficits, including lower intake of calcium and protein.
How can pediatricians appease families’ anguish when their children don’t eat well?
Families can, occasionally, overestimate food allergies or intolerances as contributors to feeding problems or a reason to restrict their child’s diet. In these cases, we suggest pediatricians pursue high quality testing and discuss objective data with the family. Providers might also consider screening for celiac and nutritional deficiencies. If nothing else, these actions can be reassuring to families who are stressed by their child’s diet.
Providers should assess for constipation and treat it aggressively. In our clinic, approximately 88% of our children are chronically constipated and may not have regular treatment. Children with ASD may require more intensive treatment than the typical child.
We recommend pediatricians engage in conversations with parents who are pursuing elimination diets as a treatment for ASD. They should provide education to the families about the insufficient empirical support for these interventions and the potential harmful consequences of pursuing these diets in children with significant nutritionally deficits.
Families should be encouraged to continue serving a variety of foods as much as possible, even if their child doesn’t accept them. Families can approach this by offering their child a choice around food types (e.g., which vegetable would you like on your plate) versus insisting they eat the one you are offering. If the child won’t tolerate the new food on his plate, find an acceptable middle ground (e.g., in a bowl next to his plate).
We also encourage families to create opportunities for their child to explore food without the stress of having to eat. This can be done with “tasting parties” outside of mealtimes. While offering those opportunities, parents should encourage exploration of the food and flexibility with its presence or tasting it. Families don’t always have to insist their child take a bite, but rather allow them to get used to the food in smaller steps. Encourage families to celebrate any exploration and flexibility with eating (e.g., touching, poking, smelling to licking, biting nibbling, trying a different brand of food, or slight alteration to a commonly accepted food). Families can call these explorations “adventure bites,” “brave bites” or “explorer bites,” anything that resonates with the child to give their body a chance to get used to the new food. Encourage the families to think about creating opportunities for their child to be flexible with the foods he or she is already eating during this time (e.g., different brand of bread, different cheese type, vegetable into a favorite dish, a different smoothie with similar flavor, etc.).
Finally, providers should encourage families to adhere to a mealtime schedule and avoid a grazing schedule.
Do children with feeding problems need to see a specialist? What should families do if one is not available?
It is important that feeding issues in children with ASD are addressed by a specialist. These problems don’t resolve on their own over time and may get worse. The recommendation to “let them get hungry and wait until they eat” does not work and can result in serious harm. Providers should refrain from this recommendation and instead get the children and family to the right intervention specialist.
Behavioral interventions provided by an interdisciplinary team are currently the only empirically supported treatment for pediatric feeding disorders in children with ASD. Unfortunately, few of these interdisciplinary programs exist, which results in a huge barrier to accessing care. We have one such program at Children’s Autism Center, however families often encounter long wait times because there are limited providers trained in working with this complex population.
While families are waiting, providers should help parents find resources and put together their own care team, including:
- A medical provider who can assess for any underlying medical reasons why the child is refusing to eat
- A pediatric dietician who can conduct a thorough nutritional evaluation and provide recommendations for food choices to work on in therapy and any other supplementation
- An occupational therapist and/or speech and language therapist to assess for sensory and oral-motor concerns and recommend treatment
- A child behavioral psychologist who specializes in applied behavior analysis, who can thoroughly assess and provide evidence-based treatments for a child’s avoidant anxiety, challenging parent-child feeding dynamics, significant disruptive behavior and food refusal in children with ASD
Together, this team can craft a plan addressing why a child might be refusing to eat.
Why is it important to use an interdisciplinary care model when treating children with ASD?
Usually, there are multiple causes of feeding challenges in children with ASD, so making sure the etiology is reviewed from each perspective ensures an underlying cause is not missed from a treatment perspective.
What online resources would you recommend to patients and families who struggle with ASD food challenges?
What is one piece of advice every family facing these issues needs to hear?
Feeding challenges in children with ASD are incredibly common, can be severe and are often overlooked by clinicians. It is important to listen to families and let them know they are not alone. Acknowledge their stress and how the feeding challenge restricts their normal family activities. It is also important to avoid power struggles or forcing the child to eat something they do not want, as this usually makes the situation worse. Instead, families should seek help and celebrate their child’s flexibility and food variety with positive reinforcement.
With such a long waitlist at the Seattle Children’s Autism Center, where do you recommend PCPs send their patients?
Providers can continue to refer to our program as we try to increase our access to care
The Autism Center also offers classes each month for parents on feeding issues. Once a provider has made a referral, parents can call the Autism Center at (206) 987-8080 to schedule a class.
You may also view a video lecture by Dr. Danielle Dolezal about improving meal times on Children’s YouTube channel.