Eating disorders and autism

Research suggests that between 4 – 23% of people with an eating disorder are also autistic.

We are hoping that the information on this page can help to inform and empower autistic people struggling with eating disorders, to get the help and support that they deserve.

How might eating disorders show up for autistic people?

Eating disorders are complex mental illnesses, with no single cause. No matter whether someone is neurotypical or neurodivergent, eating disorders are not all about food itself, but about feelings.

The neurodiverse experience of an eating disorder is often different than that of a neurotypical one. For autistic people, an eating disorder may develop for a variety of reasons, such as:

sensory difficulties e.g., Difficulties recognising hunger cues, or having a strong aversion to the texture of foods,
difficult emotions e.g., Feeling out of control/ distressed can lead to someone controlling food intake and weight to manage their emotions,
social challenges e.g., Feelings of isolation and loneliness,
the need for routine, which can lead to the development of strict food rules and rigid food behaviours.

Remember, "If you meet one autistic person, you have met one autistic person".

“I have my ‘safe foods’ that I can manage pretty much whenever, but I have other foods that I need to avoid if I’ve had a stressful day or am feeling overwhelmed... when I’m in a strained emotional state [some foods] makes my skin crawl. Sometimes it’s textural. Sometimes it’s a temperature issue.”

“It found its voice, and was able to shout louder than mine, tell me what to do, limit my activity, and make me cower to its demands. I was in a domestic, toxic relationship with an invisible voice living within me"

Sensory Regulation Techniques

Some people may be affected from sensory input, particularly autistic people, which can impact the eating disorder recovery journey. Sensory regulation techniques can be helpful and be used by anyone, but they may be particularly helpful for autistic people.

The 3 E's

Emotions

Eating disorders are complex, and autism can make it hard to know what emotions you are experiencing. Recognising what you might be feeling can help in trying to manage it. To do this, practice noticing any physical sensations you may be experiencing and try to identify the emotion attached to it e.g., Bored, lonely, angry, stressed, tired, etc. You may like to try some of our BLAST distraction techniques to help with these emotions.

Environment

Thinking about your surroundings – is anything bothering you and adding to feeling overwhelmed or uncomfortable e.g., loud noises, strong smells, bright lights, etc. Can you remove yourself from this environment or help lessen these difficulties with self-protecting strategies e.g., noise cancelling headphones, ear plugs, or going to a room with less stimulation like somewhere darker/quieter.

Extras

It might be helpful to add sensory items to a self soothe/sensory box or bag to help regulate any strong feelings. This can also be taken out and about to help with difficult situations related to the eating disorder, and where sensory difficulties are heightened, such as mealtimes.

Take a look at our suggestions for regulating your senses below.

To increase stimulation

Smell: Smell nice scents e.g., Perfumes, candles, hand creams, moisturisers, flowers, or lavender.
Touch: Squeeze stress balls, use fidget toys, use a weighted blanket, touch something soft and comforting, or something stimulating such as slime or putty.
Sight: Watch soothing/aesthetically pleasing videos, look at bright or colourful lights, watch lava lamps, look outside, watch nature.
Sound: Listen to your favourite sounds, listen to music, listen to white noise/static.

To decrease stimulation

Smell: If possible, remove yourself from any smells that feel too overstimulating.
Touch: Remove any uncomfortable clothing or labels, put on something that feels more manageable or helpful e.g., A base layer to reduce the sensation of clothing on skin, or soft pyjamas.
Sight: Use sunglasses and if possible, remove yourself from any harsh lighting.
Sound: Reduce noise with headphones or ear plugs, take yourself to a quieter place, listen to white noise/static to decrease the impact of unpredictable/unexpected noises.

Supporting a loved one that is autistic with an eating disorder

Be aware that some autistic people may struggle to identify the emotion they are feeling. Asking someone about their physical sensations can help with identifying their emotions.
Be open to avoiding/clarifying something in less metaphorical language if needed.
Be mindful of sensory issues around mealtimes and difficult conversations e.g. background noise, bright lights, strong smells.
Give an indicator when you're done talking by asking a question, e.g. How do you feel about that? What are your thoughts on that?
Consider non-verbal solutions to issues e.g., Fidget toys at mealtimes.
Consider their communication preference e.g., Would they find it easier to talk about their eating difficulties through written communication?
Prepare any changes in advance to help with managing expectations.
Maintain a dependable and structured eating schedule and home routine.
Encourage sensory/emotional regulation techniques around mealtimes (see the 3 E’s above)
Advocate for their specific needs e.g., At school and appointments.
Encourage them to use hobbies and/or any special interests or strengths as a distraction, positive focus, or motivational factor for recovery.
Check out our carers platform, POD, for support and advice on caring for someone with an eating disorder.

Reasonable adjustments to eating disorder treatment

The guidelines

In 2015, the Department of Health and Social Care published the latest binding Autism Act statutory guidance, which states that autistic people should have support adapted to their needs if they have a mental health difficulty, such as an eating disorder.
The National Institute for Health and Care Excellence (NICE) guidelines recommends adapting therapy to suit the needs of autistic people.
MEED guidance recommends that autistic people with eating disorders should be managed as outpatients or day patients as far as possible, using adapted therapies such as Cognitive Behavioural Therapy (CBT).

You can requestion reasonable adjustments to support yours or your loved one’s eating disorder journey as an autistic person. There is no set way to request these adjustments, however it is best to do so in advance so that the request is "reasonable".

What kind of reasonable adjustments can be made?

The PEACE Pathway at King’s College London has published a series of recommendations based on clinical practice that aid in supporting an autistic person with an eating disorder.

Similarly, the National Autistic Society and Mind worked together to publish a Good practice guide for professionals, to support in the delivery of talking therapies for autistic adults and children.

We know that everybody’s experience of autism is unique, so different people may require different support needs and adjustments. Here are some suggestions that may help in your eating disorder journey:

You can request...

Information on what to expect, what the environment is like and who you will be meeting. Upfront information can include pictures, schedules, written checklists, and examples.
To see the same person in the same appointment room each time if sessions are ongoing.
Appointments/sessions at a quieter time of the day.
If there is a quiet area for you to wait in, if you find the environment of a waiting room challenging. Or you could ask if you could wait in your car or outside, and for someone to call you when it is time for you to see the healthcare professional.
Longer appointments/sessions.
Information to be provided in an accessible format e.g., Easy Read.
A written summary of what has been discussed at the appointment/session and any next steps.
For some information to be communicated in writing if it’s easier for you.
To observe a group session initially if group therapy is a part of your treatment.
1-2-1 therapy sessions if you do not feel comfortable participating in group sessions.
If there is a space you could use, should you need to take a short break and agree in advance how any breaks would work.
That healthcare professionals use PEACE Pathways recommendations to adapt your treatment to suit your needs as an autistic person

SELF-HELP TIP:

You could plan/practice your journey to any appointments (or use online maps and street views), take someone with you, and write down any thoughts or questions in advance. You could also make a note of any communication preferences, sensory needs, support needs (i.e., things you may struggle with or need help with), and anything else you may want a healthcare professional to know about you.

You can use our GP Leaflet to help with your first GP appointment.

If you don’t feel like a reasonable adjustment has been listened to, you can find some helpful steps on our Overturning bad decisions (and understanding good ones) webpage.

If someone suspects an eating disorder, they should reach out to someone they trust and make an appointment with their GP without delay. Recovery is possible.