*This article has been edited with helpful comments from Eva Musby, author of 'Anorexia and other Eating Disorders: how to help your child eat well and be well'. You can find more resources for carers on her website here*
Supporting Eating Difficulties
This section will focus on how to support the person you are caring for/working with with their eating. For more information on how to nutritionally support someone with an eating disorder, visit here. It is not uncommon for autistic people to eat either too much or too little. This resource will mainly focus on the ‘too little’ side, however there are some tips for the ‘too much’ scattered throughout and why this may be and the advice will still be applicable in creating a positive eating environment.
Autistic people are often labelled ‘picky eaters’ and people with the comorbidity often find that their eating preferences are labelled as eating disorder ‘behaviours’, even when these ‘behaviours’ were present in childhood, long before the onset of the eating disorder. Autistic people can have very specific requirements around their environment, including what they eat. This is due to differences in sensory sensitivities (more detail of these sensitivities here), emotional profiles, cognitive profiles and social profiles, which is how we have sectioned the below guide to supporting autistic people with an eating disorder.
One important consideration before addressing the below information: autistic people can sometimes be prescribed stimulant medication; this is often the case when there is an ADHD comorbidity. Some stimulant medications have a side effect of decreased appetite and may be impacting hunger levels. It is important to rule out any other medical reasons for eating difficulties. Constipation can also impact appetite and although it may be a symptom of a restrictive diet, it is still recommended you seek medical guidance.
They may experience sensitivities to taste, maybe things taste differently for them than they do you. Try and figure out together what this might be like, maybe they find tastes overwhelming and prefer bland food. Maybe they have low sensitivity and prefer strong flavours like spices and salty food. Work with what the individual prefers, it is an added challenge to everyone asking someone who is hyper-sensitive to taste to eat spicy food. This can be hard to get right and it might be worth consulting a dietician.
If someone has a low sensitivity to taste and prefers food which has very strong flavours like spices, it is important to be mindful that too many spices can be harmful with acid reflux in a potentially already compromised digestive tract.
Some autistic people can be very specific about which flavours they can tolerate, sometimes only being able to eat packaged sweet or salty foods. They may be able to expand their range with fruit purée or dried fruits.
If they can find smells overpowering, it might be an idea to move the location of where then eat, maybe out of the kitchen, if possible, if that’s a particularly strong-smelling space. If this is not possible, try masking the non-preferred smell with something they like (for example lavender).
Smelly food can also be overpowering for someone who is hyper-sensitive to smell, which could be a reason for food refusal. Cold food has less odour than hot food, which may be an approach to try if you think odour is part of the problem.
How is the lighting in the room they are eating? Play around with it and see if there is something, they prefer which soothes them. The colour of food can also be off putting for some people, with a preference often being for ‘beige’ foods.
As well as this, clutter can be disturbing for some. Think about the environment you are in and try and keep it as clear as possible. This can also apply to the plate! Some people are put off food when the plate is cluttered and messy, preferring to have all parts of their meal separate. If this means having the mashed potatoes on a separate plate, try and accommodate it if you can.
Some people may find the textures of certain foods intolerable. It is important to understand this as best you can and avoid similar textured food which may provoke the same reaction. This could be to the texture of the food in the mouth or due to the sound the food makes when chewed. This can be either way with finding food too much in terms of texture, or it could be under sensitive and crave food with texture.
Someone who is sensory seeking may find that in craving certain food with texture, they tend to overeat, which could be applicable to autistic people with Binge Eating Disorder. If texture criteria have limited a person's range of food intake, you can explore other foods with a similar texture. For instance a bag of crisps and a bag of fresh pre-chopped vegetables may give the same crunch and be equally convenient.
Temperature of food also comes into this category, and again this can be an extreme one way or the other with some only liking food to be extremely hot, and others once it is cool.
Out of the mouth, someone may also find using a fidget toy at mealtimes makes it easier to focus on the task at hand.
As mentioned, some dislike of foods might come from the sound the food makes when it is chewed. Crunchy food can be loud when chewed which some people may find distracting or unpleasant.
There are other aspects to sound which may be beneficial, consider playing some calming music or white noise, although some may prefer silence. This also applies to conversations during mealtimes. Some people may prefer to use headphones or ear defenders when eating.
The vestibular system is to do with orientation and balance. Someone with atypical vestibular sensitivities could be supported with chairs with arms to provide extra support or foot stools.
This can be to do with things like co-ordination and an understanding of our body positions or ‘bodily awareness’. A person may struggle to use cutlery efficiently or with swallowing. One option for this is to try weighted cutlery, which will give the person a clearer idea of the movement involved in plate to mouth. Concerns with swallowing may cause worries around potential choking, and food could be being avoided due to these worries. Ensuring sufficient support is in place with a back rest or sitting on a pillow can help with these worries. To further reduce this fear, it might be worth thinking about the type of food being consumed, with something soft and smooth being easier to go down.
This is focusing on the internal feeling that someone experiences. Some autistic people may not be as tuned in to bodily cues such as hunger and fullness. This can be thought about using a body diagram using this resource here. This is also why it is so important to have a regular eating routine for someone with the comorbidity, not just in terms of their rigidity, but also as they may not be able to rely on the typical cues on hunger and thirst, which they may not experience. This in itself can lead to under-eating or over-eating.
Make notes as you go along. What makes up this individual’s ideal sensory environment for mealtimes? Note it all down here (template: Creating that ideal sensory environment). This may not be a magic wand and take away all eating challenges, but managing the sensory environment will make them feel much more in control and reduce their anxiety, making it easier to tolerate other stressors brought about by the food. It might help to break each box of this template in half, dividing each senses likes and dislikes. If this is consistently not working, it might be helpful to note down every instance when it goes wrong and looking to see what the common cause is (use this template: finding out what went wrong). Try doing a couple when things go well and try and compare them too.
A lot of emotional arousal around mealtimes can be managed by considering and being sensitive to the sensory sensitivities above.
Other practical bits of advice would be around predictability and familiarity. Try and keep mealtimes as consistent as possible once you have found a winning combination supporting the sensory sensitivities (this might take some initial trial and error and collaboration). Being consistent with timings, location and other adjustments suggested above is really important. Knowing that the food won’t be touching if they can stand that will make coming to the table a less anxiety provoking situation. This also goes for branding, which people can be very particular about. Having a meal schedule (Weekly meal planner template) with meal plans known about in advance can decrease worry and increase predictability and a sense of control, which is so often lacking in autistic people with an eating disorder. It might also be helpful to include meal times on this.
However, this cannot always go to plan, and when it doesn’t you are likely to see out bursts of emotions. You may go to the shops and there is no Sainsbury’s flatbreads left, which is always a Monday night side. This sort of problem is likely to arise. One way to manage it is to come up with a contingency plan. Discuss with your loved one before how they would like to manage this situation to reduce anxiety when it inevitably occurs again. Perhaps they have a ‘safe’ meal on back up which is something that can always be found in the cupboard (best to buy a couple of these!). Having an action plan for when things go wrong can keep that sense of control and predictability. Find out which aspects would be the worst if altered and come up with a contingency plan. Someone has decided to practice their trumpet during lunch time- that’s ok! You know reduced noise is important, prep for this happening and get some ear plugs. You bought crunch peanut butter instead of smooth? The back-up meal is ready! Create a back-up plan together using this template (Back-up plan).
Sadly, sometimes even the back up plan goes wrong or is not good enough. When this happens, thinking of some basic strategies to reduce arousal. These will be different for each person; you might have to find out what works the hard way. Try and think about what sensory input relaxes them and work with this. Dimmed lights, quiet space, perhaps something tactile like a stress ball. Sometimes a diary can be helpful or just talking it through with another person. Ask your loved one to complete this resource here (what relaxes me) for you to understand how best to support them when things go wrong.
Another reason they may be restrictive in their food intake is due to their cognition. Research from our lab has demonstrated that people with eating disorders often have increased cognitive rigidity. Pair this with the cognitive rigidity found in autistic people and you will frequently find someone who will be very restrictive in routine change and very rigid in their daily life, including eating patterns. Our research team has found that therapies such as cognitive remediation therapy (CRT) can be beneficial and reducing rigidity in autistic people with eating disorders.
Another cognitive aspect which could be important is justification. WHY is eating food so important if someone is restricting? And why is it so important to moderate your eating if you are overeating? Have a look at these resources here. It is important when talking about food groups and eating not to label foods into ‘good’ and ‘bad’ categories as this information can be taken literally and result in further restriction.
For autistic people, socialising can be exhausting at the best of times. For autistic people with eating disorders, socialising whilst trying to complete a meal could be the worst possible combination. However, for another this could be a welcome distraction. You need to decide together how best you can approach the social aspect of eating. Below are some questions you can ask to find out more:
Do they prefer to eat with other people?
Do they like you to talk to them? Encourage them? Do they prefer silence?
Do they prefer to watch their favourite TV show?
Does it help when the person with them models eating?
Or do they like to eat alone?
Do they like when someone sits next to them? In front of them?
Does their chair have to face the door?
Can other people touch their food?
Although some of these behaviours might not be what comes to mind when we think of ‘ideal table manners’, the goal at this stage is to get your loved one eating consistently, and if this means they have to watch TV and touch all of their food with their hands to eat it, that’s ok!
As many social interactions are built around food, it may be useful for your loved one to be involved in meal choices, meal shopping, or meal prep. However for some this interferes with eating disorder treatment, as the person cannot yet make wise choices. In this case, there are other ways to be sociable.
When they do not complete a meal, or when things go wrong, be ready to give skilled support and problem-solve with a non-judgemental, non-punitive stance.
Try and involve their special interests, either in conversation or in the meal itself- or both! Work with what motivates them at a pace that works for them when involving change.
You might find these interesting too!
Information on what is autism and answers to other questions you might have about the neurodevelopmental condition.
This blog post aims to provide dietetics with a greater understanding of the development of the PEACE care pathway and how dieticians can support.