Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum Conditions: A Practical Guide for Parents and Professionals Interview

Dr. Gillian Harris and Dr. Elizabeth Shea joined us for an interview on their book, Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum Conditions: A Practical Guide for Parents and Professionals. What follows are our questions in italics, and their thoughtful responses.

You divided your book, Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum Conditions: A Practical Guide for Parents and Professionals, into 2 Parts. In Part 1, you provide information on the development stages of acceptance and rejection of new foods in infants and children. What can you tell us about neophobic factors that may impact a child’s eating behavior?

The neophobic response (fear of new foods) can be seen in all children from the age of around 2 years. At this stage, toddlers have learned what the foods they have been eating from infancy look like and which packets they come from. As they move on to the stage of language development they begin to sort things in their mind according to categories. They have a visual image of the foods they eat and exactly what they look like. If a food doesn’t look like a food they recognize they will refuse it. It can also be that they will refuse a food they have eaten before but which doesn’t quite look the same as usual. So, parents might add some cheese to some pasta and that will be refused; it doesn’t look the same. They will also refuse foods if the packet they come in changes! In the neophobic stages most parents will have a child who becomes rather fussy, and might insist on their bread being toasted to an exact shade of brown, and their yoghurt only being strawberry flavored! Any mixed textured foods are more likely to be refused too, quite often, because the child can’t see what exactly it is they are eating.

The neophobic response is more extreme in those children who are sensory sensitive; they respond more to taste, to touch, to smell, and the way things look. So, very food avoidant children are more likely to be more neophobic. Whereas other children will move out of this neophobic response over the next few years, (they learn that foods are more or less the same even if they look a little different), very avoidant children don’t move on. They restrict the number of foods they will accept, until they eat only a very narrow range, sometimes as few as 5 foods.

Please tell us about “disgust responses”.

Infants learn which foods are safe to eat, but that means they also learn some foods are not safe to eat. In the early years, the disgust response can be triggered by a taste, a texture, or just the sight of a food. There are big differences in just how children and adults react to tastes and textures. Some are very sensitive to the taste of bitter, so green vegetables will taste disgusting to one child but not to another. Some are more sensitive to texture; ‘slimy’ textured foods are difficult for many children and adults to accept. Many dislike ripe bananas, or certain types of jellied fish. ‘Slimy’ textures are more likely to be seen in foods that are starting to rot, and bitter tasting foods are more likely to be poisonous; so these disgust responses are quite sensible.

The disgust response can also be triggered by a combination of foods, so one food a child might like can’t touch another liked food; the beans mustn’t touch the potato. But then most adults wouldn’t mix their ice-cream with their bolognaise sauce!

As children get a little older, other types of disgust come into play. There will be foods that are not eaten at all in their house, perhaps because their family is vegetarian. Foods that haven’t ever been eaten can quite often trigger a learned disgust response. Children who are very avoidant eaters and who have kept to a limited range of foods in early childhood, very often feel disgusted by foods they don’t and can’t eat. This might mean they can’t sit at the dining table when the rest of the family is eating different foods. They might gag and vomit when they see foods they don’t like; their reaction is one of extreme disgust and very uncomfortable for the child.

Should parents worry if their child is eating less than children of the same age?

Children’s appetites are driven by their energy needs and their rate of growth. A shorter child will need less food than a taller child; a very active child will need more food than a more placid child. So, ‘no’, parents shouldn’t worry if their child is eating less than another child of the same age. The important thing to check is that your child is following along their expected height line on the centile charts. A child who started off on the 2ndcentile at a few months old can still be expected to be on the 2ndcentile at 5 years old; and a child who started off on the 50thcentile should stay on that line. The smaller child will have a smaller appetite. If your child is active and growing as expected then no need to worry.

There is a difference of course between eating less food than another child, and eating fewer foods than another child. Some children will also eat fewer foods than other children. This is because some children are very responsive to food cues and will eat anything that is presented, other children can be a little more wary.  If you add up all the food your child eats and you have around 30 different foods (including all those biscuits and candy) then you usually don’t have to worry.

What are symptoms that suggest ARFID is present?

I would expect a parent to tell me their child has usually been quite difficult to feed right from infancy; disliking the feel of ‘lumpy’ solids in their mouth, and quite often being reluctant to pick up finger foods. They quite often continue to prefer milk feeds to solid food. As the child goes into the neophobic stage, then parents report the foods their child did eat gradually get rejected, until they are only accepting 10 or so foods. The foods they usually accept are more likely to be brown/ beige carbohydrates (potato chips, bread, cookies) with smooth yogurts or custards. These children are often ‘brand loyal’, as well. They will only eat one make of potato crisps or one flavor pudding. Anything with a difficult texture (chewy, stringy, slimy) will be refused. This means avoidant children are very unlikely to accept fruit, vegetables, meat, and fish. Avoidant children would rather go without any foods than eat foods they dislike.

Most young children will imitate others, especially other children, and want to eat what they eat. Avoidant children don’t imitate others’ eating behaviors because they are so fearful of foods, so they don’t move out of the neophobic stage.

Please share some markers that indicate a child is ready to move forward with new foods.

This is one of the most common questions asked by parents when they come to clinic and forms part of any assessment of avoidant eating. Whether a child or young person is ready to move on is usually very individual to that child and depends on a number of factors which include their age, whether they have additional issues such as autism and how motivated they are to try something new. Having said that, there are general markers to watch out for; any of the following may indicate the child is ready:

• Showing an interest in what others are eating, particularly friends.
• Accepting a different flavour or brand of a preferred food when offered.
• Asking for a new food.
• Eating something new spontaneously, perhaps in a restaurant or on holiday.

Over the years we have found that across the board, the age of the child is a significant factor in readiness, quite simply – the older the child, the more willing they usually are to trying something new. This is because as children get older they have more capacity to cope with fears and worries and can also be taught strategies for dealing with these. Age also brings a desire to be more like their peer group. We have met many an avoidant eater who is keen to eat the same foods as their friends or cope with a school trip, for example, without being seen as ‘different’ from the crowd. This is where motivation is key, the more motivated the child or young person is the more likely it is they will be able to choose a food to try, expose themselves to that food, for example, by watching others eat it, and finally put it in their own mouth! For children with relatively typical development this stage of readiness often begins around the Junior school age (eight and above) and runs into adolescence. For young people with additional autism, this stage is typically 3-4 years later, so perhaps not until later adolescence.

One strategy you encourage for children with ARFID is to set a daily schedule. Please explain.

Scheduling is a key strategy for children and young people with ARFID and leads to a number of benefits which include:

• Increasing the number of ‘eating opportunities’ a child has in a typical day.
• Allowing calorie intake to be stable and regular and avoiding ‘compensatory’ eating.
• Involving school or college in an overall eating plan for that young person.
• ‘Training’ the child to recognize and respond to appetite ‘cues’.
• Helping the family as a whole to manage the stress of mealtimes.

Let’s deal with each of these in turn. Many reluctant children eat small amounts at mealtimes and may also be very slow. This causes parents a lot of stress about whether the child is having ‘enough’ to eat. By scheduling regular ‘eating opportunities’ (we would recommend 6 of these in a typical day) the reluctant eater is getting multiple chances to take in the right amount of calories they need for growth. In addition, because these calories are going in at regular times (again we recommend these are ‘timetabled’ to fit the child’s daily activities) the child is better able to concentrate in school and have the energy needed for their day. For this to work it is crucial that school or college are on board and allow the child’s preferred foods to be eaten there. Without such involvement, we often find the child ‘compensates’ for lost calories during the day (perhaps because they were not allowed crisps or cookies in school) and eats a large amount of these at home.

Scheduling in this way also teaches the child to start to recognize appetite ‘cues’, such as when they are starting to feel hungry. This is particularly useful for children with autism who lack ‘interoceptive’ awareness, or an understanding of what is going on inside their body. It is also useful when introducing a new food, as this is more likely to be eaten if the child is feeling hungry. Lastly, scheduling means the ARFID child can often be included in family mealtimes without the pressure of this being the only time the parent can get those precious calories in.  [NB: I stopped using the words ‘meal’ or ‘snack’ some years ago as I found this can put extra pressure onto families where the child does not eat typical meals or snacks].

What are some skills you recommend when anxiety is active for those with ARFID and autism regarding food?

Anxiety is a major factor in both autism and ARFID so for those with both it is really difficult to manage. The first thing to say is that if there is any extra anxiety happening outside of food, such as transition to high school or college or changes such as moving house do not make any alterations to the child’s eating pattern. This is very important as any increase in anxiety leads to an associated increase in sensory issues which leads to more food rejection. At such times (which also include pleasurable events like seasonal holidays), keep all routines around foods and mealtimes the same, now is not the time for adding something new! If the young person’s anxiety has become more worrying and they are at risk of harming themselves, or are displaying significant behavior changes, or are more withdrawn, then seek immediate professional help.

For those young people who show some signs of readiness (see above) then they may be ready themselves to try and deal with the anxiety associated with eating, in particular, in trying something new. One of the main problems with anxiety in relation to foods is that the physical symptoms of anxiety such as fast heart rate, theneed to go to the toilet, or lack of appetite all prevent us from being able to eat! For this we recommend learning some basic relaxation techniques such as:

• Learning to breathe slowly and from the diaphragm.
• Learning to relax muscles in the body known as ‘Progressive Muscle Relaxation’ or using a practice such as yoga or Tai Chi.
• Imagining or visualizing being in a calm and safe space or using ‘mindfulness’ techniques.

Using a relaxation technique regularly lowers general anxiety and when used just before trying a new food for the first time it also lowers the chance of sensory rejection and increases the possibility of the child being able to go through with putting the food in their mouth. In addition, for the most able young people talking about their fears and worries around food can also help them achieve the goal of adding a new food to their diet.