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Interactive Autism Network at Kennedy Krieger Institute
Date Published: 
June 15, 2010

Photo of Dr. Anil DarbariFamilies of children on the autism spectrum are often concerned about their child's diet, food intake, or gastrointestinal issues. Some families struggle with actual "feeding disorders" -- problems around food and eating so severe they can interfere with normal growth, a child's ability to benefit from other interventions, and a family's daily functioning. We interview Dr. Anil Darbari, Medical Director of the Pediatric Gastroenterology/Nutrition and Feeding Disorders Program at the Kennedy Krieger Institute in Baltimore, Maryland, to learn more about these disorders and how they are treated.

Dr. Darbari, can you tell us what "feeding disorders" are?
Certainly. Many children are picky eaters, but "feeding problems" are a much more serious issue. A child may be extremely selective about what food he or she will eat, or refuse food altogether. The child may vomit or gag when food is presented. The child may even have become dependent on tube feeding. A variety of negative behaviors may have also developed around food and eating, such as major meltdowns whenever a parent is presenting the child with food.

For families this can be very difficult. Parents are worried, and trying to make the child eat. (Especially if a child already has an issue such as autism or a developmental delay, no one wants the situation to become worse because the child isn't getting enough food.) Relatives and neighbors are critical, and parents feel hopeless and guilty. Power struggles, depression, and other negative consequences ensue. Our goal is to help the child learn to eat, and support the parents as they learn new ways of interacting, keeping step with the child.

Do children with autism spectrum disorders (ASD) have more feeding or related issues than other children?
We don't have evidence that gastrointestinal or feeding issues occur more in children with ASD than in other children. (Some studies have shown that, but then could not be replicated, that is, new research studies trying to duplicate those findings could not.) Feeding problems, however, do occur more often in children with all kinds of developmental disabilities, including ASD.

How do feeding disorders develop?
Feeding problems typically are multifactorial; that is they start in several ways. A child may have a structural issue of some kind, such as a problem in the esophagus, stomach, or intestine. A child may have been born prematurely, or been on a feeding tube for a long time. A child may have sensory issues so that he doesn't like having food in his mouth. This could be any food, or just food of a certain consistency, temperature, etc. Whatever starts the problem, if it goes on for awhile...the child is not exposed to age appropriate food and loses skills.

Can you tell us what you mean by that?
Well, usually children learn to eat different "levels" of food as they grow. Babies start with liquids, move on to baby cereal, then to chunkier foods and a larger variety of foods. If a 6 year old has been living on liquid formula or milk all her life, she hasn't learned to chew, or to tolerate different textures, temperatures, or types of foods. To top it, parents may be (appropriately) insisting she eat what 6 year olds are supposed to eat, but the child really can't at this point. She hasn't gone through the step-by-step stages of learning how. The more the family tries, the more the child resists, usually with undesired behaviors, and it becomes a vicious cycle.

That must be awful for the child, and the parents.
It is. They are trying their hardest, but are not succeeding with the child as far as food and eating goes. In addition, they are often being criticized and blamed by relatives who may say, "Give her to me. I'll get her to eat!" They can end up feeling guilty, helpless, and depressed, as well as worried sick about the child who won't eat.

How does your Feeding Disorders Clinic treat children and families like this?
We use a multidisciplinary team to address all of the issues that are going on for a specific child and family. First, we try to get a good picture of what the issues are. Are there medical issues that must be resolved before we can re-train the child to eat? Sensory issues? Behavioral issues?

What types of professionals are on your team?
Our team consists of physicians, nutritionists, behavioral psychologists, occupational therapists, speech therapists, and social workers. We all have the same aim: to help this child and family! But we have different jobs towards that end.

Can you tell us what roles your team members play as they try to help a child with feeding issues?
Of course. Physicians on the team, including specialists in gastroenterology, address medical issues. We need to take care of any medical problem first, or other interventions will not succeed. Does a child have any problems with their GI system, for example? Does the child have food allergies that may have gone unrecognized? Reflux issues?

We also have nutritionists on staff to make sure that a child, at whatever age or stage, is getting sufficient nutrition. They monitor exactly how much and what the child is eating, and the child's weight. Whether the child is just on liquids, or will only eat a few types of food, or is on a special diet, or is from a vegetarian family, a family that keeps Kosher, or a family from a specific culture with specific foods (like Mexico or India), the nutritionist will make sure they are getting the nutrition they need to grow and develop.

Where does the behavior treatment come in?
Children with feeding issues have often developed behaviors that are not helpful, like throwing tantrums when food is offered. Our behavioral psychologists work to change these behaviors. They are very data driven, by which I mean, they collect detailed information to try to figure out the "ABC" of a behavior. "A" is "antecedent" -- what occurs right before this behavior occurs? What is associated with it, or triggers it? "B" is the behavior itself. "C" is the consequence of the behavior. Has the negative behavior been unintentionally rewarded? The aim is to reward and encourage positive behaviors, building up from small successes to bigger ones, while eliminating negative behaviors. Maybe the first step is to get a child to tolerate having an empty spoon touched to his mouth. If he can do this, and is then rewarded, he learns it wasn't that bad...and there's no need to have a tantrum when a spoon comes towards your mouth. Then they build on these successes.

What is the role of speech or occupational therapists in the treatment?
Children with feeding issues, especially those with ASD, may have problems with communication in general, and with communicating about food, hunger, and what they want, specifically. Speech therapists address this piece of the puzzle, tailoring the intervention to the child's need. Is the child verbal? Non-verbal? Does he need to learn signs or use a picture system to show what he wants or that he's full or that his stomach hurts? The therapists help the parents communicate, too: "Here comes the next bite!" let's the child know what to expect.

Children with feeding issues also simply don't know how to eat. Occupational therapists can help them learn to chew, and to swallow, food of different consistencies or textures. They can help them learn to sip from a cup, if they have been unable to do this. OTs provide what we call "oral-motor therapy."

What role do the social workers play?
An important one! Social workers play a critical part in helping the family recover from all the misery that has gone before, and to learn new ways of interacting. They help the family overcome any guilt or blame they have felt, and help them become unstuck from any "vicious cycle" that has developed. Sometimes, there are even marital problems that have arisen because of all the conflict around food and feeding, which they can also help the couple deal with.

How long does this type of intervention take?
That depends. There are several ways we see patients. Sometimes, we just offer a one day consultation, trying to help the professionals where a family lives get an idea of what is required to help the child. Sometimes, we see a child on an outpatient basis, that is, they come to scheduled appointments periodically. We also have more intensive programs where a child comes every day, all day, or even where a child stays in the hospital with us for a number of weeks.

Usually the children who stay in the hospital with us are of one of two types. They either have additional complex medical conditions that need to be taken into account, or they have ASD and need the continuity to make progress. (For example, they might have done fine, coming Monday through Friday, to our day program, but are back to "square one" after the weekend.)

How old are the children that come to your clinic?
As a rule, the younger we can get them in, the better. Having said that, an infant under a year's age probably is not able to understand the ABCs of learning how to eat. Most of the children we see are anywhere from late infancy to pre-school age, although we do see children as old as 12.

How do families access this kind of treatment? What are the barriers?
Especially in the current economic climate, it is definitely hard for families. Insurance companies sometimes deny treatment although we try to get across to them that it is much better to address these feeding issues as soon as possible, and not to wait until there is a crisis. Some families self-pay, and some get help from their relatives and neighbors; we have had families come who partly paid for treatment with funds raised by their church, for example.

How successful is this kind of treatment?
It is generally very successful. We develop goals with families, and work hard to see that progress is made. The goal might be "introduce 30 new foods" and "help the child accept chunkier consistencies of food." It is incredibly rewarding to see a child with a severe feeding disorder, and a distressed family, enter the program and make such fantastic progress that the "vicious cycles" have ended, the parents are feeling more competent and hopeful, and the child is able to eat more age-appropriate foods.

Thank you so much for giving our readers some insight into the issue of feeding disorders, Dr. Darbari.
My pleasure.

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