Children with neurodevelopmental difficulties who avoid or refuse food

Children with developmental difficulties, for example Autism Spectrum Disorder (ASD), often have problems with eating. Research has shown that 40 to 80 percent will have problems with food at some point. This can range from children who over eat, to children who have restricted diets.

As parents or carers, it may be really difficult if you are worried about your child’s eating patterns. Food can be a really emotional issue, and mealtimes can end up being stressful and frustrating for families.

This resource should give more information and strategies to try, as well as how different professionals at The Ryegate Children’s Centre might be able to help.

It is important to remember that we all have a ‘limited diet’ and our own food likes and dislikes. Think about the meals you eat each week, or what you have for lunch each day. It’s probably fairly similar.

Restricted eating only becomes a problem when:

• a child isn’t growing properly or is not getting enough of the right nutrients they need
• it has a significant impact on family life
• it interferes with your child’s social life
• it makes it difficult for them to fit in

Why are children with neurodevelopmental disorders more likely to have problems with eating?

Some children may have sensory difficulties affecting their experience of how food looks, smells or feels.

Social interaction difficulties may mean the social aspect of eating is challenging. For example, sitting in a school dining room, and family meal times. This also means children are less likely to observe and pick up good eating behaviours from other people, such as table manners and politeness.

Children with neurodevelopmental disorders find change difficult, and often prefer when things around them stay the same. This may be because their brains process information differently, or because they tend to have higher anxiety levels than other children. This can make it difficult for children to try different foods or eat in new places.

How can I help my child?

All the above reasons mean children with neurodevelopmental disorders are more likely to have had difficult experiences of food and eating. They can feel anxious or ‘unsafe’ around certain foods.

An important part of knowing how to help, is understanding your own child’s experience of food and eating. This can help find the cause of the problem. A food diary can be a really useful place to begin. Start to take note of what is eaten and when.

Sometimes keeping a food diary can also be reassuring because you might discover that your child eats a greater amount and wider range of foods than you originally thought.

Is it sensory?

Lots of children with neurodevelopmental disorders also have sensory processing difficulties.

Taste and smell are 2 of our senses which influence our eating behaviours.

Children can be oversensitive to certain tastes and smells. They often do not like strong tastes and restrict their diet to bland foods. They may not like the textures of certain foods, such as wet, runny, mushy or lumpy foods, and restrict themselves to dry foods such as toast or crackers. The smells of food cooking can be overwhelming for very sensitive children.

Some children are not sensitive enough to tastes and smells. These children tend to crave strong tastes and smells (such as a hot curry), and hard, crunchy textures. They may try to eat non-foods.

Strategies that might help oversensitive children

Is your child ready to eat?

Warn your child that a meal is nearly ready (about 5 minutes), so that they can have time to prepare their sensory system.

You can also desensitise their mouth. Some children benefit from some massage around the face and mouth before eating. Let them use their hands or the handle of a vibrating electric toothbrush held against the cheeks and lips for a few minutes.

Is the smell of cooking too much?

If possible, avoid cooking and eating in the same room. Some children will be overwhelmed by the smells of cooking and then unable to eat.

Are they sitting comfortably?

Make sure your child is comfortable where they are eating. If they are sitting at a dining table, make sure their feet can touch the floor, or rest on a stool or box under the table. If they prefer to eat with their feet tucked underneath them on the chair, or kneeling up, let them. The extra sensory feedback to their body may calm the oversensitivity in their mouth.

Do they need distracting?

As well as the smells and tastes, some children find the sight of food off-putting because they are visually oversensitive. If this is a problem for your child, accept that they may eat better when distracted by watching a TV programme or an iPad. You may have to lower your expectations for conventional table manners if you want your child to eat.

Do they need a calmer environment?

Busy school canteens and noisy restaurants can be overwhelming for an oversensitive child. If they will not eat at school, ask if there is a quieter, calmer space for them to eat their lunch.

Is it about anxiety?

When we are anxious, our senses will be heightened. This means that smells, tastes and textures become more overwhelming. We also experience lots of physical sensations, including feeling sick or a ‘butterflies in the stomach’ sensation when we are anxious. If we feel like this, we may only feel like eating certain things.

We also know that when children are anxious, their behaviour or routines become more rigid. This will make it more challenging to try new foods or change their behaviour around eating.

Strategies that might help highly anxious children

Think about when to make changes

If your child has a lot of difficult things going on in their life, it might not be a good time to start trying to introduce new foods.

Reduce stress in other areas of their life

If you think your child’s anxiety is affecting their eating behaviour, it might help to reduce other demands in their life.

For example:

• Make sure their daily routine is predictable and consistent.
• Introduce visual reminders.
• Make sure they have plenty of calming activities planned into their day.
• Reduce unnecessary social interaction.

Is it about food?

Has your child had experiences with food and eating that have caused them stress?

Past feeding experiences can have a big impact on how children eat, even from as far back as from when they were born. If your child was born prematurely and fed by a tube or vomited a lot when feeding, this can cause difficulties with eating later on.

If mealtimes at school or at home are stressful this can affect appetite and reduce the amount a child will eat.

Strategies that might help with food

Has your child missed out on eating different textures so they are unsure what to do with foods in their mouth?

A speech and language therapist can advise you how to help your child develop the different skills needed to chew different foods. This might involve some messy food play.

Messy food play

Messy food play can help children explore food without the pressure to eat. In time this will help lessen their anxiety around food. It will also help them explore how foods feel, smell and change. This will help them know how food will feel and behave in their mouth and may desensitise them to the feel and smell of food.

How do you and your child communicate about food and mealtimes?

It is important that you communicate with your child in a clear, consistent and calm way.

Presenting information visually can also help. This could be a visual timetable to show when meals are, what foods are on offer at school or pictures of emotions to help your child express how they feel about food.

Try not to categorise foods into healthy and unhealthy, or good and bad. This can sometimes be taken too literally and can cause further problems. Instead look at the different categories of foods and what physical characteristics the foods share. All crisps are hard, beige and crispy so they know what to expect. But vegetables come in all different colours, shapes and sizes. This is one reason why fruit and vegetables are so challenging for children. Try to make a fun game to explore all the types of fruit and vegetables.

Is it to do with the social aspect of eating?

The social side of mealtimes can be stressful. Your child might be more relaxed, and eat more volume or variety, if they are allowed to eat in a smaller group or room at school.

If a meal is not going to be at home, prepare your child in advance by telling them:

• Who will be there.
• Who will they be sitting with or next to.
• What people might talk about.
• What they could say to start a conversation.

A social story could help someone to understand why we eat and the function of food.

Is it because change is difficult?

Most children with neurodevelopmental disorders find change difficult and prefer things around them to stay the same. One reason for this is that their brains process information differently. Children with neurodevelopmental disorders often have a brilliant attention to detail, but can find generalising and categorising objects more difficult.

This means children might:

• Notice tiny ‘imperfections’ in foods.
• Refuse a food they have previously eaten if the packaging or recipe changes slightly.
• Struggle to recognise that two foods may be similar to each other. For example that pasta shapes and spaghetti are both pasta and taste the same but look a lot different.
• Notice how food is presented or positioned on a plate.

It also means that children feel like they are constantly experiencing new things. This makes the world feel quite overwhelming and scary. Sticking to the same foods can help them to feel safe.

Strategies that might help with change

• Never hide food you want your child to eat inside food you know they will eat. This may ‘contaminate’ their ‘safe food’ and they may refuse to eat it again.
• Listen when your child tells you a food is different or ‘wrong’. They are probably right! Understanding why they have a problem with something will help you work out a solution.
• Try to think about introducing foods that are similar in some way to something your child already eats. For example, the same colour, texture, food group. You could try talking to your child about how a food might be similar or different to other food they already like.
• Presenting the same food over a few days or weeks can be helpful, rather than changing frequently between new foods. For example, have a ‘food of the week’.
• A new food on the same plate as a ‘safe food’ may ‘contaminate’ the ‘safe food’ for your child. Think about putting new food on a separate plate.
• Make sure your child sees you eating the food you would like them to try.
• For some children, writing a social story might help you work out together what is okay and not okay about differences in foods. Find out more about social stories and how to write them here.
• Prompt your child to try things but never put pressure on them to eat something. If they feel forced, this will increase their anxiety and have the opposite effect.

Sticking to routine around food and mealtimes can help children feel more comfortable. But try to avoid going to extremes to get your child to eat, such as presenting the food in a certain rigid pattern.

Is it about behaviour?

The answer to this question is probably yes!

Something is described as a behaviour when we have learned to do something or not to do something. Learning happens very quickly when we have had a ‘bad experience’ because our brains are programmed to keep us safe and avoid danger.

Most people will be able to think of foods they do not eat because of one bad experience, such as being ill. For children with neurodevelopmental disorders, most eating difficulties will start as a sensory issue or a difficult experience with food (e.g. reflux as a baby, being sick). Your child will learn very quickly to avoid certain foods or eating in particular times or places.

When we have learned that something isn’t safe, we have to retrain our brains to realise that it’s okay really. This is called ‘desensitisation’. Desensitisation involves a gradual exposure to new foods. This can lower anxiety and eventually lead to the food being accepted into your child’s diet. However, just like learning anything new, it can take lots of time and practice to feel comfortable.

Strategies that might help with behaviour and eating

• Involve your child if possible. Talk to them about a goal. Is there a particular food they want to be able to eat? Is there a situation where they want to be able to eat? Make this manageable by only choosing one thing to work on at a time.
• Your child will need to go through different stages to accept new foods.
• First let your child just look at the food. Then touch it and ask them to put the food on their plate. Then smell it, lick it and put it into their mouth. Then bite it, chew it, and swallow it.
• Try not to react negatively to food being spat out. This is helping your child to become comfortable with different foods being in and around their mouth.
• Each of these steps could take months to complete. Try to see the goal as learning about and being comfortable around different foods, rather than getting them to eat all of the different foods presented.
• Manage your expectations. Do not expect big changes to happen quickly. It will take time for a child to accept new foods (research has found that children need to try food at least 8 to 15 times before they accept it into their diet).

Managing your stress

Children learn very quickly that what, and how much they eat is important to their parents.

If you are anxious, your child will probably sense this. It may make them more anxious, or they may see an opportunity to bargain with you. If your child is healthy and growing, avoid arguing into a debate with them. Let them eat what they want without making a fuss.

Remember eating a new food is challenging for everyone. We will all only try a small taste of something new, do not put the amount of food you want your child to eat on the plate and then have to throw it away, give them the amount you know they might eat.

Your child will probably be feeling really scared about trying a new food. Give them lots of praise every time they make a step towards trying anything new.

Remember that what is ‘normal’ eating for a child with developmental difficulties might not be the same as ‘normal’ eating for a child who doesn’t have developmental difficulties. Think about what should be normal for your family, and try to stick to that.

Who else can help?

There are a number of professionals at The Ryegate Children’s Centre who might be able to help you think about your child’s eating and give you advice.

Parent workshops

If your child has an Autism Spectrum Disorder (ASD), you will have been invited to a workshop which aims to help parents increase their overall understanding of ASD. As part of this workshop, eating difficulties are discussed and some general strategies are provided.

Sensory service

If your child has ASD and sensory issues that are affecting them in a number of ways, including eating, you can access the Sensory Service here www.sheffieldchildrens.nhs.uk/sensory for more general information and advice about sensory processing.

Speech and Language Therapy

If your child will only accept a limited range or texture of food, the speech and language therapist will assess your child’s chewing and swallowing. You will then have the opportunity to attend a workshop with the speech and language therapist, to explore strategies that you can try at home.

Psychologists

If your child’s eating difficulties are a symptom of more general difficulties with managing anxiety, you might be invited to a workshop aimed at helping your child manage difficult feelings.

Doctors

If you or someone else is really worried that your child’s eating difficulties are affecting their health, they may be reviewed by a paediatrician or referred to a dietician to make sure they are growing and have all the nutrients they need. The dietitians are based at Sheffield Children’s hospital and your GP or paediatrician will be able to refer your child to them.

Things to remember

• We all have a limited diet, but there are specific times when this becomes a problem, especially for children with developmental difficulties.
• Understanding your child’s experience of food and eating will help you find the cause of their restricted eating.
• Oversensitive children may need preparation for eating. Such as a good sitting position, distraction from the appearance of food and a lower sensory environment for mealtimes.
• Children who have had stressful feeding experiences may need help to develop their feeding skills and make more positive associations with eating and food.
• Children with restricted diets may need change in their diet to happen gradually and at times in their life when they feel safe and free from other stresses.
• Never hide food you want your child to eat, in food you know they will eat. You may “contaminate” the safe food.