Eating disorders
An eating disorder (ED) is a mental health condition that can affect anyone. Eating disorders can include regularly eating too much or not enough to manageg difficult emotions, or excessively worrying about body weight or shape. Eating disorders can have a significant affect your physical and mental health. Research suggests that autistic people may be more likely to experience eating disorders. With the right support, most people can recover from an eating disorder. If you are struggling with an eating disorder, the right support could help you develop healthy eating patterns and cope with the underlying causes.
What is an eating disorder?
- Anorexia nervosa: not eating enough food, exercising too much, or both
- Binge eating disorder (BED): regularly eating a lot of food over a short period of time until you are uncomfortably full
- Bulimia: binge eating followed by being sick, taking laxatives or exercising too much to prevent weight gain
- Other specified feeding or eating disorder (OSFED): similar symptoms but not an exact match for specific eating disorder.
Avoidant and restrictive food intake disorder (ARFID) is also a recognised eating disorder and describes when someone has a limited diet in terms of range and quantity. AFRID is often driven more by sensory differences.
You may be more likely to develop an eating disorder if you have:
- a family history of eating disorders, depression, or alcohol or drug misuse
- been abused
- been repeatedly criticised for your eating habits, body shape or weight.
What are the effects of an eating disorder?
Physical effects can vary between people and diffeent disorders, but can include:
- rapid weight loss
- feeling cold and weak
- difficulty concentrating
- irregular/no periods (for those who usually have periods)
- dizziness
- hair falling out
- nails cracking/turning yellow
- fast/irregular heartbeat.
Eating disorders can have very serious consequences and can result in hospitalisation. Read more about eating disorders on the NHS website.
How common are eating disorders in autistic people?
Why might autistic people develop an eating disorder?
- sensory differences related to food (including not recognising hunger or fullness, known as interoception)
- food, counting calories and exercise becoming an intense interest/obsession, or being used to manage general anxiety levels
- developing strict routines and rules around food and exercise that are very difficult to change
- a need for control and familiarity (such as restricted eating)
- using food to manage difficult emotions – made harder if you have alexithymia (difficulty recognising and understanding emotions).
How do I get help and support?
If you think you might have an eating disorder, then try to speak about your feelings to someone you trust. You can also speak to your GP about getting further help and support.
There are no national guidelines for treating eating disorders in autistic people. The treatment is the same for autistic and non-autistic people.
Therapies
The National Institute for Health and Care Excellence (NICE) recommend that children and adults with an eating disorder should have access to psychological therapies that specialise in treating eating disorders. These include individual, family and self-help therapy.
Ideally, someone with a good understanding of autism should deliver all treatments and therapies. Professionals should consider how things like sensory differences, routines and structure may play a part in your eating disorder, and how this differs from non-autistic people.
You may find certain therapies and treatment programmes, particularly group-based ones, difficult. They may involve a lot of social interaction. You might find it difficult to identify, understand and talk about your feelings around food. Support should be adapted to your specific needs. Visit our Seeking help with mental health page for more advice.
Autistic people often experience health inequalities because therapies and treatments…are set up for neurotypical people, and professionals are not able to be flexible in how they work.
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To ensure that your service is accessible to autistic people, you could consider the following recommendations:
- A thorough assessment of both autism and eating disorders that looks at both in the context of the other
- Having a well-supported clinical team with training in autism
- Using a tailored sensory screening tool to adapt the environment
- Adapting therapies and approaches
- Providing carers support
- Offering one-to-one therapy sessions
- Using structure and routine within treatment
- Introducing changes to routine gradually and with close support
- Assessing for alexithymia
- Emotional regulation and stress management techniques.
Identification
Eating disorders can be hard to identify in autistic people. It can be difficult to know if someone with an eating disorder may be autistic. For example, those with anorexia nervosa may starve themselves and this can cause them to prefer the same routine and have less interest in socialising. Both of these can be mistaken for autistic characteristics. Also, many autistic people may have eating difficulties but not an eating disorder.
Advice and tips
You might find some of these tips from autistic people who have experienced eating disorders useful:
- Ask for help and seek professional support
- Keep in contact with friends and family
- Use hobbies to distract yourself
- Accept that recovery takes time, sometimes years, and it will be different for everyone
- Create healthy routines around meal planning and exercise.
Read some personal accounts below:
- Purple Ella (2019): Autism And Eating Disorders
- Carrie Beckwith-Fellows (2018): I Have an Eating Disorder Because I’m Autistic
- Outdoor Prescription and Me (2017): Eating and me, an eating disorder on the spectrum
- James Sinclair (2019): Autism, Food and Eating Disorders: Overcoming Restrictive Eating
- Ginny Grant (2020): Atypical Anorexia: Facing an eating disorder, Autistically
- Autcasts Online (2019): Masking, Eating Disorders
- Pooky Knightsmith (2020): Autism and Anorexia: 5 things you need to know about the interplay
- Jemma Cowan and Rachel Moseley (2021): Autism and Eating Disorders Across the Lifespan – Bodywhys webinar
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- Autism Services Directory: for services and support
- Branches: offering support, information and social activities for autistic adults, children and their families in their local areas
- Community: our online community is a place for autistic people and their families to meet like-minded people and share their experiences
- Good practice guide: for professionals delivering talking therapies for autistic adults and children.
- Guide to asking for reasonable adjustments
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- NHS – eating disorders
- Mind – eating problems
- Beat Eating Disorders website
- National Eating Disorder Service, South London and Maudsley produced an autism-specific clinical pathway that aims to improve treatment outcomes for autistic people with eating disorders - Pathway for Eating disorders and Autism developed from Clinical Experience (PEACE).
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ResearchAuthor: Barnett et al 2020
Title: The Association Between Autistic Traits and Disordered Eating is Moderated by Sex/Gender and Independent of Anxiety and Depression
Source: Journal of autism and developmental disordersAuthor: Saure et al (2020)
Title: Characteristics of autism spectrum disorders are associated with longer duration of anorexia nervosa: A systematic review and meta-analysis
Source: International journal of eating disorders.Author: Kerr-Gaffney et al (2020)
Title: The social responsiveness scale is an efficient screening tool for autism spectrum disorder traits in adults with anorexia nervosa
Source: European eating disorders reviewAuthor: Bentz et al (2020)
Title: The autism diagnostic observation schedule: Patterns in individuals with anorexia nervosa
Source: European eating disorders reviewAuthor: Babb et al (2021)
Title: It's not that they don’t want to access the support…it’s the impact of the autism’: The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals
Source: AutismAuthor: Brede et al (2020)
Title: “For Me, the Anorexia is Just a Symptom, and the Cause is the Autism”: Investigating Restrictive Eating Disorders in Autistic Women
Source: Journal of Autism and Developmental DisordersAuthor: Giles et al (2020)
Title: Do orthorexia and intolerance of uncertainty mediate the relationship between autism spectrum traits and disordered eating symptoms?
Source: Eating and Weight DisordersAuthor: Kerr-Gaffney et al (2020)
Title: Exploring Relationships Between Autism Spectrum Disorder Symptoms and Eating Disorder Symptoms in Adults With Anorexia Nervosa: A Network Approach
Source: Frontiers in psychiatryAuthor: Smith and Tchanturia (2020)
Title: Are Huddles the Missing PEACE of the Puzzle in Implementing Clinical Innovation for the Eating Disorder and Autism Comorbidity?
Source: Frontiers in PsychiatryAuthor: Tchanturia et al (2020)
Title: Towards an Improved Understanding of the Anorexia Nervosa and Autism Spectrum Comorbidity: PEACE Pathway Implementation
Source: Frontiers in PsychiatryAuthor: Adamson et al (2020)
Title: Carers’ views on autism and eating disorders comorbidity: qualitative study
Source: BJPsych OpenAuthor: Kinnaird et al (2021)
Title: A peer interview qualitative study exploring support for arers of people with co-morbid autism and eating disorder
Source: Journal of Eating Disorders
Author: Kinnaird and Tchanturia, 2021
Title: Looking beneath the surface: Distinguishing between common features in autism and anorexia nervosa
Source: Journal of Behavioral and Cognitive Therapy,
Volume 31, Issue 1,Author: Kerr-Gaffney, J.; Mason, L.; Jones, E.; Hayward, H.; Ahmad, J.; Harrison, A.; Loth, E.; Murphy, D.; Tchanturia, K.
Emotion Recognition Abilities in Adults with Anorexia Nervosa are Associated with Autistic Traits
Source: J. Clin. Med. 2020, 9, 1057.Author: Westwood, H., Stahl, D., Mandy, W., & Tchanturia, K. (2016).
Title: The set-shifting profiles of anorexia nervosa and autism spectrum disorder using the Wisconsin Card Sorting Test: A systematic review and meta-analysis
Source: Psychological Medicine, 46(9), 1809-1827.Author: Kinnaird, E., Dandil, Y., Li, Z., Smith, K., Pimblett, C., Agbalaya, R., Stewart, C., & Tchanturia, K. (2020).
Title: Pragmatic Sensory Screening in Anorexia Nervosa and Associations with Autistic Traits
Source: Journal of clinical medicine, 9(4), 1182.Author: Rhind, C., Bonfioli, E., Hibbs, R., Goddard, E., Macdonald, P., Gowers, S., Schmidt, U., Tchanturia, K., Micali, N., & Treasure, J. (2014).
Title: An examination of autism spectrum traits in adolescents with anorexia nervosa and their parents
Source: Molecular autism, 5(1), 56.Author: Westwood H, Kerr-Gaffney J, Stahl D, Tchanturia K,
Title: Alexithymia in eating disorders: Systematic review and meta-analyses of studies using the Toronto Alexithymia Scale
Source: Journal of Psychosomatic Research, Volume 99, 2017
Author: Cardi V, Tchanturia K, Treasure J.
Title: Premorbid and Illness-related Social Difficulties in Eating Disorders: An Overview of the Literature and Treatment Developments
Source: Curr Neuropharmacol. 2018Author: Sedgewick, F., Kerr-Gaffney, J., Leppanen, J., & Tchanturia, K. (2019).
Title: Anorexia Nervosa, Autism, and the ADOS: How Appropriate Is the New Algorithm in Identifying Cases?
Source: Frontiers in psychiatry, 10, 507.
Author: Westwood, H., Mandy, W., & Tchanturia, K. (2017).
Title: Clinical evaluation of autistic symptoms in women with anorexia nervosa
Source: Molecular autism, 8, 12.Author: Huke V. et al. (2013)
Title: Autism Spectrum Disorders in Eating Disorder Populations: A Systematic Review
Source: European Eating Disorders Review. 21(5), pp. 345-351.Author: Nickel K. et al. (2019).
Title: Systematic Review: Overlap Between Eating, Autism Spectrum, and Attention-Deficit/Hyperactivity Disorder
Source: Frontiers in Psychiatry. Vol. 10, p. 708.Author: Christensen S. S. et al. (2019)
Title: Disordered eating behaviours and autistic traits - Are there any associations in nonclinical populations? A systematic review
Source: European Eating Disorders Review. Vol. 27(1), pp. 8-23.Author: Kerr-Gaffney J., Harrison A., Tchanturia K. (2019)
Title: Cognitive and Affective Empathy in Eating Disorders: A Systematic Review and Meta-Analysis
Source: Frontiers in Psychiatry. Vol. 10, p. 102.Author: Leppanen J. et al. (2018)
Title: Differences in the Theory of Mind profiles of patients with anorexia nervosa and individuals on the autism spectrum: A meta-analytic review
Source: Neuroscience & Biobehavioral Reviews. Vol. 90, pp. 146-163
Author: Mandy W., Tchanturia K. (2015)
Title: Do women with eating disorders who have social and flexibility difficulties really have autism? A case series
Source: Molecular Autism. 2015, Vol. 6, p. 6Author: Nielsen S, et al. (2015)
Title: Effects of autism spectrum disorders on outcome in teenage-onset anorexia nervosa evaluated by the Morgan-Russell outcome assessment schedule: a controlled community based study
Source: Molecular Autism. Vol 6(14), p. 7.Author: Arcelus J, et al. (2011)
Title: Mortality rates in patients with anorexia nervosa and other eating disorders: A Meta-analysis of 36 Studies
Source: Archives of General Psychiatry. Vol. 68(7), pp. 724-731.Author: Wentz E, et al (2009).
Title: Adolescent-onset anorexia nervosa: 18-year outcome
Source: The British Journal of Psychiatry: The Journal of Mental Science, Vol. 194(2), pp. 168–174.Professional resources
Author: PEACE Pathway (accessed 2021)
Title: Pathway for Eating disorders and Autism developed from Clinical Experience (PEACE)Author: Fiona Fisher Bullivant and Sharleen Woods (accessed 2021)
Title: Autism and Eating Disorders Across the Lifespan
Source: Bodywhys webinarAuthor: NHS
Title: Overview of eating disordersAuthor: Mind
Title: Eating problemsAuthor: Autistica (accessed 2020)
Title: Anorexia and autismAuthor: NICE (2017)
Title: Eating disorders: recognition and treatment (2017)Author: Mandy, Dr. W., Babb, C., Brede, J.
Title: Anorexia nervosa in autistic females (2018)
Source: National Autistic SocietyAuthor: Carson (accessed 2017)
Title: Are Anorexia and Autism Related?Author: Geraud (2016)
Title: What You Must Know About Eating Disorders and the Autism SpectrumAuthor: Clare Allely (2013)
Title: Anorexia nervosa -on the autistic spectrum?
Source: The PsychologistPersonal accounts
Author: Carrie Beckwith-Fellows (2018)
Title: I Have an Eating Disorder Because I’m Autistic (2018)
Author: Dr Pooky Knightsmith (2019)
Title: Autism, Anorexia & Me - Gareth Morewood interviews Pooky (2019)Author: Outdoor Prescription and Me (2017)
Title: Eating and me, an eating disorder on the spectrum (2017)
Author: James Sinclair (2019)
Title: Autism, Food and Eating Disorders: Overcoming Restrictive Eating (2019)
Author: Pooky Knightsmith (2020)
Title: Autism and Anorexia: 5 things you need to know about the interplay (2020)
Author: Pooky Knightsmith (2019)
Title: Anorexia and Autism – lessons learned on the road to recovery (2019)
Author: Jemma Cowan and Rachel Moseley
Title: Autism and Eating Disorders Across the Lifespan – Bodywhys webinar (2021)Author: Purple Ella
Content from Purple Ella about her life with autism
Last reviewed: May 2021
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