Stacy: Our agenda is to give you an introduction to feeding and how behavior analysts and occupational therapists can work together on feeding goals. We are also going to discuss some feeding myths. We will talk about some research and background information. Additionally, we will talk about some mealtime and other goals that can be created around kids with feeding problems. We will discuss strategies for teaching, and leave some time for questions at the end.
Feeding is Complex
While eating is something that is very simple for most of us, it can become a huge problem for some individuals. Eating is something that we do several times a day often without even thinking. Think about how often you mindlessly eat in front of the television or while chatting with friends. You look down and your entire meal is gone or that entire bowl of tortilla chips from the Mexican restaurant has disappeared. For most people, eating is effortless. However, for some people, eating can be very complex. When children have difficulties eating, we often say that they are having feeding difficulties and possibly even a pediatric feeding disorder.
A pediatric feeding disorder is defined as a condition in which a child does not eat enough to provide adequate nutrition, calories, or hydration. This is very different from an eating disorder that many of us are familiar with that strikes many teenage girls. For some children, particularly those who experience medical difficulties or have autism, eating is extremely difficult and complex as it involves all nine of these domains.
- Organs
- Muscles
- Senses
- Developmental level
- Medical history and present status
- Learning history / style / capacity
- Nutritional status / history
- Culture
- Environment
Sensory Processing
In ABA therapy, or applied behavior analysis therapy, we often see children who eat a limited variety of foods, limited textures of foods, and/or limited quantities of food. Particularly for children with autism, eating can be extremely difficult. When talking to behavior analysts, the idea of sensory processing can sometimes be a touchy subject to embark upon. Many of them do not feel comfortable distinguishing between what is sensory and what is a behavior. However, as a behavior analyst myself, I like to think about it from a very practical perspective and the idea of sensory issues does not necessarily ruffle my feathers, as I have learned from some great folks like Rachel. When I think about this, I think about myself at a concert and how it can be extremely crowded, warm, and extremely loud. There can also be flashing lights. People often bump into you, and they can have different smells. You are getting all kinds of sensory stimulation and it can be hard to process. This is similar to when a child is presented with food. He is assaulted with sensory input from all sides, from the lights in the room, to the number of people sitting at the table, the noise level in the room, the feeling of the chair beneath him, the clothing he is wearing, the aromas of the food, and the textures of the food that he feels both on his hands and in his mouth. Processing all these stimuli can be very overwhelming for the child's system to interpret, which is why they may avoid foods or try a food and then become upset. They do not know how to process the sensory information.
One feeding specialist by the name of Kay Toomey, whose focus is on utilizing a sensory oral sequential approach, or the SOS approach, created feeding hierarchies on the steps it takes to eat a meal, and has broken down the task of feeding into discrete steps. She was able to identify 32 discrete steps from the very presence of food in the same room as the child, to the child interacting with the food, and eventually eating it. In some respects, those of us with behavioral training can probably interpret some of these so-called sensory labeled approaches as what we would call behavioral shaping procedures with food. Many times it is just figuring out how to talk the same language, or interpret each other's terminology for things.
Prevalence
According to the American Speech-Language-Hearing Association (ASHA) website, it is well documented that 25 to 45% of all children have feeding and swallowing problems, and 30 to 80% of all children with a diagnosed developmental disability have feeding and swallowing problems. Those requiring serious intervention and often medical intervention due to serious feeding problems is 3 to 10% of all children, 26 to 90% of children with physical disabilities, and 10 to 49% of children with medical illnesses and prematurity. So, while it seems like eating is a basic need and it should be simple, it is actually really not.
Important Implications
Depending on the industry that you are in, particularly those who are charging for their services and those working in hospitals and places with budgets, the cost of treating pediatric feeding disorders is quite high. Often, it also involves the need for mental health services for the family members caring for these children, in addition to the cost to treating the children themselves. When we talk about significant feeding problems, we are discussing feeding problems that can result in severe consequences, such as growth failure, susceptibility to chronic illness, and huge family stressors. Working in collaboration with feeding therapists, specialized doctors like gastrointestinal doctors, nutritionists, ABA therapists and other specialties becomes essential for the successful progression of a feeding program. Some children with pediatric feeding disorders that go untreated end up with a gastronomy tube, or a G-tube, which results in high healthcare-related costs.
For example, Milnes, Piazza and Carroll reported in 2013 that the cost of a G-tube is approximately $41,811 for the first year. Over two years, the healthcare cost for that child is estimated to be $78,811, and after five years, that cost goes all the up to $189,811. These estimates are for uncomplicated care. This means that there are no other significant medical problems related to the G-tube, and these numbers do not include costs associated with family or individual therapy that may be necessary as a result of increased stress or psychopathology that has been documented in the families of the children with feeding problems.
Additionally, long-term chronic feeding problems are associated with health risks for the child, increased perceived stress for the child and the family, mental health problems in families, increased risk of eating disorders such as anorexia, and increased healthcare costs for the child and the family. Therefore, the treatment of pediatric feeding problems can result in improved health of the child, improved quality of life for the child and the family, decreased mental health problems in families, and reduced risk of long-term eating problems, and decreased healthcare costs. Thus, it is really important that we figure out how to help families treat these disorders.
Feeding Myths
Listed below are several things that the average person thinks are true about eating, but they are myths according to Kay Toomey.
- Eating is the body’s number one priority.
- A child will not starve himself.
- Eating is instinctive.
- Eating is easy.
- Eating is a 2 step process (sit down & eat).
- It’s not ok to play with your food.
- Children only need to eat 3 times a day.
- If a child won’t eat, they either have a behavioral or an organic problem (it can be both!).
- Certain foods are only to be eaten at certain times of the day.
- Mealtimes are a proper social occasion. Children are to “mind their manners”.
What do you think the body's top two priorities are? One person said breathing. Somebody else said eating and sleeping, while another said water. These are the most common answers when I ask this question. But Lorraine said positioning. The top two priorities are breathing and postural stability, and notice we did not say eating. This leads to myth number two, which is that a child will not starve themselves, and when they are hungry enough, they will eat. This is completely false. There is a condition called failure to thrive, where children have been known to restrict their caloric intake to the point that it may kill them or require hospitalization. They ofent also require a feeding tube that goes directly into their stomach.
Feeding is a very complex area to treat. In the average applied behavior analysis (ABA) program, children with current medical conditions, most of the time, should not be treated. It depends on the program. The average ABA program treats conditions such as food selectivity and mealtime problem behaviors without failure to thrive or untreated medical conditions. For children with current medical conditions, such as G-tube dependence or unresolved medical concerns, children are typically in a specialized clinic with a multidisciplinary team including a behavior analyst. It is not usually done by the average behavior analyst going into the home and doing therapy there, which is more of the typical model of care.
The Struggle
Many families struggle with getting their children to eat every day. Sometimes it can be just a phase and other times it is overall picky eating. It can become so pervasive in the child's life that it prevents them being able to participate in mealtime with their family or get all of their caloric and nutritional needs from food intake. Some examples are below.
- A child who will only eat foods that are white or tan in color. This seems to be common amongst kids with autism.
- Some will not eat food if it touches another item on the plate.
- A child might see a string on a banana and cry like you chopped off his leg.
- Some will only eat green beans if the seeds are picked out from each and every one and removed from the plate.
- Others will not eat meat unless it is a cold hotdog, and you must call it a cold dog, because if the child hears the word hotdog, he will not even touch it.
These things are things that many children will do on any given day depending on the amount of sleep they have had, how well they are feeling, and so on and so forth. However, when these things are a struggle with every single food, during every single meal, of every single day, these are when parents seek help. Which leads us to asking, "When is help needed?"
When Is Help Needed?
Feeding disorders often start with medical complications such as:
- Failure to thrive
- Food selectivity
- Maladaptive behaviors at mealtime
- Medical issues early on prevented age typical eating patterns to emerge
- Change in eating habits (frequency, variety, quantity)
- Overeating
- Unable to chew
- Swallowing problems
It is common in children born prematurely, who are dependent on machines in the first stage of life, who are not fed traditionally, suffer from acid reflux, who have had aversive reactions to foods due to allergies, or children who have experienced discomfort after eating because of either constipation or diarrhea. Often, it starts with a child who develops acid reflux early in life, particularly when the parents do not recognize the signs of acid reflux and it goes untreated. Following meals, these children begin to have the discomfort and pains associated with the reflux, and after several feedings, food intake becomes paired with the aversiveness of pain or discomfort resulting in food avoidance altogether. This avoidance to feeding of certain types of foods results in the child being extremely selective with the foods that they consume. Following their limited food consumption, they become deficient in developing age-appropriate oral motor skills, which continues to restrict their access to other varieties of food. We end up with a family who avoids birthday parties and gatherings with friends because finding something their child will eat outside of the home brings an enormous amount of stress, and this process can continue to snowball until the appropriate treatment is obtained.
Feeding and swallowing disorders can be treated by speech pathologists, occupational therapists, and behavior analysts, working individually or as a team with other professionals, such as a GI doctor and a nutritionist. Typically, a child would seek treatment from a speech and language pathologist when there are oral motor concerns, such as the strength of the jaw muscles, ability to chew and move food within the mouth, or ability to swallow safely without aspirating. Occupational therapists are often sought out for treatment when there are fine motor impairments to allow the child to functionally use a cup or use silverware to bring the food from the plate to the mouth. In addition, OTs can work with a child who is experiencing aversions to certain textures of foods. When a child is a safe eater orally and he can functionally use silverware, but food refusal and mealtime problem behaviors are still occurring, then a behavior analyst is often consulted and can treat the feeding concerns. Of course there are therapists within each field with experiences that allow them to cross those general lines and areas of expertise, but I think when a physician is looking to refer a child to a specific specialty, they keep these general areas of focus in mind.
Why ABA?
The progression from a medical problem to a behavioral problem can also be apparent. A child may engage in food-refusal type behaviors after experiencing something like GERD (acid reflux). The child protests and the parent takes away the food so that the child can avoid pain. However, once a child's acid reflux has been treated and food is no longer causing pain, the child has now learned to protest to get away from the not preferred foods. Many times bribing happens at this point and kids learn that if they protest they can get rewards for finishing their meal. The child may then engage in these behaviors to manipulate mealtime and gain access to reinforcement in the absence of medical concerns.
Prior to Treatment
Rachel: There are some concerns prior to treatment that need to be addressed. All children should be medically cleared prior to starting treatment, particularly when there is a sudden change in a child's eating habits. Listed are some examples of types of medical clearances a therapist may ask for depending on the root of the feeding concerns.
- GI concerns identified (e.g., constipation, diarrhea, delayed gastric emptying/motility problems, GERD)
- Allergies
- Aspiration risks
- Dental concerns
- Barium Swallow Study completed
- Metabolic disorders
I had a child that I worked with in the past that is a perfect example of a sudden change in a child's eating habits. When he was in preschool, he would eat anything everything you put on his plate. Mom would pack him a lunchbox every day full of food from Whole Foods. When he was 7, he stopped eating. He had a diagnosis of autism, but feeding and sensory concerns were never an issue in the past. It was now taking him an hour and a half to eat just a tiny piece of chicken and a small piece of watermelon. It became a huge ordeal. He functioned great in his classroom and fit in with his peers, but because of his feeding concerns that appeared practically overnight, he had to be pulled out of his general education class to receive extra attention because of how much disruption it caused.
