If you’re a parent to a child on the autism spectrum, take some comfort in knowing that up to about 90% of children with autism struggle with significant eating challenges. You are NOT alone in this. The challenges can range from picky eating to dependence upon PediaSure or g-tube for caloric intake. We know that children thrive in an expected world. But children with autism can take that to the margin where a preoccupation with sameness can drive them to eat only the same thing every day. Despite these staggering numbers, there are evidenced-based treatments and models of care that can help improve the lives of children and families from a nutritional and quality of life perspective. I had the pleasure of having Dr. Danielle Dolezal on the podcast to discuss this topic. The first podcast here is an overview of why children with Autism Spectrum disorders have these challenges with eating.
Rigidity and sameness contributes greatly to feeding picture. Eating is one of the most sensory experiences you can have.” ~Dr. Dolezal
Dr. Dolezal is the Clinical Supervisor of the Pediatric Feeding Program at Seattle Children’s Autism Center. She’s super smartypants and created the highly sought after (nearly 500 families on the wait list, unfortunately) interdisciplinary team model and program at the Autism Center. That means patients that have multiple factors contributing to feeding issues (medical, skill, motor, physiologic, and psychology) get to see a variety of team members under 1 roof. She started off her career with a masters in special education with special emphasis in early childhood and children who struggle with severe challenging behavior. She then got her PhD in child psychology with further emphasis in behavior analysis specializing in feeding disorders and severe challenging behavior. So needless to say….she knows her stuff. Her podcast is so good. Insistence on sameness is a common theme and can be horribly challenging for families who worry about their child’s nutrition.
A Few Quick Tips:
- Try to not let your child slip into patterns of grazing, which is very common and leads to disrupted hunger/satiety patterns. This makes it difficult for them to try new foods because they graze to take the edge of the hunger all day long and are never really sitting down to eat a full meal at set meal times. They will be more apt and ready to try new foods if you keep to a set schedule. They don’t have to stay seated in a seat. They can stand up. But the food stays at the table.
- Try celebrating and reinforce flexibility with something the child is already doing. So if they are eating dry/crunchy textures, try branching out to ANY type of cracker. Go from white cheddar Cheez-It to regular Cheez-It. Celebrate that as a new learning experience and new demonstration of flexibility.
Why Does It Happen & What’s The Cause:
- Pediatric Feeding Disorders and now ARFID (Avoidant Restrictive Food Intake Disorder) is a complex psychological disorder that has many contributing factors (medical concerns, skill/sensory/motor, and psychological correlates). It is truly a diagnosis that crosses many professional disciplines.
- Typically, there is not one cause. In fact, research into this area has shown that multiple factors influence the severity of feeding difficulty in most children. For example, these challenges can include a medical condition (chronic constipation or GERD) which associates pain with eating, delay with oral-motor skills results in increased effort during meals, sensory sensitives influence more significant food restriction, and then the child experiences anxiety that leads to learned challenging behavior to avoid certain foods or escape the meal entirely. It makes appropriate assessment and treatment challenging because it requires many professionals to provide assessment and treatment (Medical, Speech, Occupational Therapists, Dieticians, and Psychologists). Therapies that occur in isolation to treat one aspect of the feeding challenge are not effective due to the other co-occurring challenges.
- Complicating this picture further, children with autism struggle in three major areas surrounding social behavior, communication abilities, and restricted, repetitive, or stereotyped patterns of behavior. Restricted interests, insistence on sameness, and struggles with flexibility can complicate the feeding picture quite significantly. When you consider the increased sensory sensitives, communication challenges, and delays in development coupled with the core features of autism eating can become quite challenging. Dr. Dolezal notes that in their practice, they see children with severe restricted food preferences (sometimes only 5 food types). She acknowledges it can be a primary area of struggle for children on the autism spectrum.
Biggest Concern For Parents:
- Parents are very concerned about their children’s nutrition due to these eating struggles. The concern is sometimes founded, which Dr Dolezal explains.
- Parents and children are incredibly stressed by the chronic battles and behavioral issues at dinner when they try to improve their intake. They seek help on how to manage the challenging behavior and avoidance at meals.
- Parents experience first line therapies that only address one domain of the problem (e.g., sensory or skill-based therapy) that doesn’t take into consideration the anxiety and learned avoidance that prevents their child’s growth and change in mealtime behavior.
- Parents are very frustrated with long waits for therapists and lack of interdisciplinary care and even getting blown off by some in the health care space that they don’t need support. While Seattle Children’s is the only interdisciplinary program with child and behavioral psychology in the Washington Alaska Montana and Idaho region, we work hard to serve as fast as we can.