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Your ATN@Work: A model program for autism-related feeding disorders

By pediatric nurse practitioner Lynn Cole, associate director of clinical services at the University of Rochester’s Division of Neurodevelopmental and Behavioral Pediatrics. The University of Rochester is one of 14 Autism Speaks Autism Treatment Network (ATN) centers across North America.

I’m very pleased to tell you about a wonderfully successful program we’ve developed at our medical center to address feeding disorders such as extreme food aversions. As you may know, many children – and adults – affected by autism also struggle with food aversions and other feeding challenges.

See the Autism Speaks ATN/AIR-P Parent’s Guide to Exploring Feeding Behavior in Autism. (Follow the title link to learn more and download the free guide.)

A helpful point on the terminology we use: The term “feeding disorders” describes people who have problems with eating enough or with eating the right type of food. This can include eating only a few types of foods, eating only certain textures or colors of food and/or disruptive mealtime behavior. These behaviors have many causes, including sensory aversions, anxiety and rigidity (difficulty with change). Some children with feeding disorders also have difficulty with chewing and swallowing or have other digestion problems. 

By contrast, the term “eating disorders” refers to conditions such as anorexia and bulimia, which are related to problems with body image and fear of weight gain.

Here at Rochester, we’ve developed a team approach to helping children with serious feeding issues. Many of these children are on the autism spectrum.

We launched the program four years ago, after recognizing that it wasn’t enough to refer children to out-of-state programs that provided in-patient treatment. Some families can’t participate in these programs for a variety of reasons, including finances and distance. For those who can attend, it’s common for feeding problems to resurface when the family returns home. We also saw the need to help families with ongoing strategies to continue their child’s progress toward more age-appropriate and healthy diet and eating routines.

A story that speaks volumes
To illustrate the great need we saw, I recall a little five-year-old girl who had autism and serious feeding challenges. She ate only a few types of strained baby food and completely refused to drink. A thorough medical examination showed no physical reason for these issues. She could chew, swallow and digest food and liquids normally.

As you can imagine, her extreme feeding issue endangered her health. She became dehydrated easily when ill. It also took hours for her parents to spoon feed her enough food each day.

Initially we referred her to a six-week, in-patient program in another state. She made some progress – taking a few ounces of juice from one particular cup and eating certain types of solid food. But someone still had to spoon-feed her. And when the family got home, they had difficulty following the routines they’d learned.

That was our wake-up call. We needed something that helped families long-term and in the setting of their own homes and lives. Add to this the growing number of kids with autism and feeding issues who we were seeing at our clinic – and the ATN’s focus on addressing physical health problems that can contribute to autism’s developmental and behavioral issues.

Launching our outpatient feeding program
In 2011, we assembled our first “feeding evaluation and treatment team.” We hired a psychologist with expertise in feeding and a registered dietician. Since then, the program has grown tremendously. In addition to our feeding psychologist and registered dietician, the team now includes a developmental nurse practitioner, social worker and a speech-language pathologist. We have a large network of specialists that we can draw from when a child’s evaluation suggests a need. This network includes an occupational therapist, gastroenterology team and an allergist.

Some of the problems we commonly address include:

* Eating very few types of foods

* Eating foods with only a certain texture, such as smooth or crunchy

* Refusing entire categories foods, such as fruits or vegetables

* Refusing liquids

* Disruptive mealtime behavior (tantrums, refusing to sit, spitting food, etc.)

Successful approaches – personalized
After a thorough evaluation by the team, we develop an individualized program for each child. Within this customized plan, we use some standard approaches that we’ve found particularly helpful.

These include what we call “food chaining.” We’ll start with a food item that a child accepts and then vary it. Take the example of a child who will eat only one type of chicken nugget, served plain. We might start by introducing nuggets with a dab of ketchup. Then we might introduce different brands of nugget, then a veggie nugget and so on.

We also help children look at food differently. A lot of children with autism tend to see things as “black or white,” or “good or bad.” We help them think about foods on a spectrum. So we’ll invite them to use a one-to-ten scale – or a frown-to-smile scale – to rate the foods they are offered to eat. This helps them see that sometimes you might eat something that is a little bit yucky but not terribly yucky.

Our psychologist also uses a range of cognitive-behavioral strategies to address food anxieties – which are likewise common among those affected by autism.

To learn more, also see “Managing anxiety in children with autism: a cognitive-behavioral approach.”

In all, more than 200 children have completed our program over the last four years. We see babies as young as 6 months and children up to adolescence. Teens, we find, tend to do best with different approach that emphasizes making independent food choices.

Gauging success
Most of the kids who go through our program make lasting progress with six to eight visits. Each visit is 45 minutes to an hour, once a week or once every other week.

Some kids with more-severe problems continue working with us for 4 to 6 months. But instead of being hospitalized in an out-of-state program, they are making progress while living with their family, going to school and being part of their community.

Best of all, perhaps, we see that the improvements kids make in a home-based setting tends to be lasting.

For me, the biggest indicator of success is the great number of parents who come to us saying things like, “I can’t believe our kid is eating that!” or “I never thought that my child would actually eat with the rest of the family, and here we are having dinner together.”

New approaches
Currently we’re evaluating a new model for our feeding program: Group sessions involving four or five children of similar ages. We find this type of interaction encourages kids in a powerful way. We’re even exploring the idea of offering a feeding “day camp” during school breaks.

Spin-off on pill-swallowing
Related to our feeding program, we also started a pill-swallowing program. As you may know, many kids with autism need to take medications but struggle with a hyperactive gag reflex or other aversions to swallowing pills and capsules. Sometimes, we can help these children with a set of home recommendations for their parents. Specifically, we give them the page on “pill swallowing” from the ATN/AIR-P tool kit Autism and Medication: Safe and Careful Use. (Follow the title link to learn more and download the tool kit free of charge.)

When this isn’t enough, we are able to help most kids achieve success with around three coaching sessions in our clinic. During these visits, we start with swallowing a candy sprinkle. Then we work our way up to swallowing a capsule or pill the size and shape of the medicine the child needs to take.

Meeting the larger need
From the day we started our feeding program, the demand has been greater than we can meet. We know the need is huge – not only here in upstate New York – but across North America and overseas.

To meet this need, we’re pursuing several approaches. First, we’re exploring the possibility of using an Internet-based “telemedicine” model to expand our reach to families who live too far from our center to visit regularly.

We’re also using our program as a training venue to give more healthcare professionals expertise in treating feeding problems. This year, we have two psychology trainees and a number of dietician trainees. We’ll be expanding our trainee crew further as we continue to expand the network of community healthcare providers who collaborate with us through the program. For example, we’ve begun working with staff in early intervention programs and schools so they can help us carry over the feeding strategies that help these kids.

We are also working to develop a model approach that we can share with healthcare providers across North America and oversees. In particular, we hope our feeding programs can serve as models for other autism centers.

If you’d like to learn more about our Pediatric Feeding Disorders program, come visit us on the University of Rochester Medical Center website, here.

In closing, I want to thank the larger Autism Speaks community for supporting our work as part of the Autism Speaks Autism Treatment Network.

Editor’s note: Do you or someone you love struggle with autism-related feeding issues? You may be interested in our weekly “Food for Thought” and “Got Questions?” advice columns. Look for them on the Autism Speaks science page every Friday, or subscribe to a daily digest of Autism Speaks blogs here.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.