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Helping Neurodivergent Kids Tune Into Hunger

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Understanding Cravings, Fullness, and the Emotional Side of Food

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Working with Eating Disorders with Margo White

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Podcast Episode · The Neurodivergent Woman · 29/09/2024 · 1h 24m

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What should I be aware of when trying new foods? Am I ready to change my eating patterns? How can I eat with other people?
Food can come with all sorts of challenges - sensory issues, social pressure, loss of control - and so making choices about what foods to eat, and coping with mealtimes can be stressful - especially when other people are involved.
If you are neurodivergent and looking to change your relationship with food, this interactive, accessible guide is the perfect companion. You might stick to the same 'safe' foods all the time, be attached to specific mealtime rituals, or struggle to know whether you are hungry or full. This guide will help you recognise the signs of avoidant eating, cope with food related anxieties and manage sensory overload, as well as the particular social stresses of communal eating.
With top tips, a progress tracker, quizzes and worksheets, this is an engaging and informative resource for teens and parents alike.

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The Autistic Teen's Avoidant Eating Workbook

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Buy The Autistic Teen's Avoidant Eating Workbook Workbook by Shea, Elizabeth, Stringer, Tim (ISBN: 9781787758599) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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George Goat (SEND Friends) : Thompson, Leanne: Amazon.co.uk: Books

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Occupational Therapy Sensory Tips and Advice Video

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Occupational Therapy Sensory Tips and Advice Video

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Newcastle Hospitals NHS Foundation Trust

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Tools for eating and drinking - Newcastle Hospitals NHS Foundation Trust

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One of the largest NHS trusts in the UK, providing healthcare to communities in the North East of England.

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Online shopping from a great selection at Books Store.

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What is PEACE?

PEACE is a Pathway for Eating disorders and Autism developed from Clinical Experience. Our research suggests that around 35% of people experiencing an eating disorder may may have autism spectrum condition (ASC), or present with high levels of autistic traits. We hope this pathway will support autistic people suffering with an eating disorder, their loved ones and their clinicians.

Help and Support

You are now part of the PEACE Community! Reach out and connect with others on one of our social pages below:

Are you a Researcher?

Welcome to the PEACE Community! We are always welcoming fellow researchers as we need more research to support this under-researched group. Check out the PEACE Lab's research here. Got a specific research question or want to get involved? Send us a message on our socials!

Resources

The PEACE Team made up from a group of wonderful clinicians and researchers have worked hard to create materials to support you! Check them out below, we hope you find them useful.

Our Book

Alongside this website, we've also written a book! Here you'll find even more information about the comorbidity, ways to adapt treatments and support recovery.
It's now available to buy on Amazon.

PEACE Blog

Have a read of our latest blog posts! Whether you want to read about someone's experiences, learn more about the comorbidity or explore nutritional recommendations, we hope you will find something that meets your needs!

Download presentations from the 2022 PEACE Pathway Conference

What is interoception, and why is it important?

BEACON is a brain imaging project looking at how the brain processes emotion and cognition in individuals with anorexia nervosa. We are also interested in how autistic characteristics affect these brain processes and how these processes change over time.

PEACE Pathway 2020 All rights Reserved Website by TOTEM

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PEACE is a Pathway for Eating disorders and Autism developed from Clinical Experience. Our research suggests that around 35% of people experiencing an eating disorder may may have autism spectrum condition (ASC), or present with high levels of autistic traits. We hope this pathway will support autistic people suffering with an eating disorder, their loved ones and their clinicians.

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If you or someone you love has been diagnosed with Avoidant/Restrictive Food Intake Disorder, treatment can help restore good physical and mental health and balanced eating habits.

Since ARFID is a fairly new diagnosis, little is known about its optimal treatment. There is no evidence-based psychological treatment suitable for all forms of ARFID at this time (that is, not enough studies have been conducted nor extensive research been documented on a particular treatment programme to determine a 'recipe for success') but that's not to say that nothing can be done.

Older children and adults with ARFID have experienced huge improvements to their health and quality of life from some of the same cognitive and behavioural interventions used to treat anorexia nervosa that have been adapted to treat ARFID. Most encouraging is a new ARFID-specific form of CBT, CBT-AR, that is newly published for adoption by both medical practitioners and parents.

Any form of ARFID treatment however should take place under the supervision of a specialist team skilled in treating ARFID. Such a team is usually multidisciplinary and can devise a programme designed to meet an individual's multiple, unique issues and needs.

Since ARFID doesn't occur exactly the same way for every individual, ARFID treatment is only successful when it's based on the individual problems and challenges a person is facing. There is no one-size-fits-all ARFID treatment. Depending on the severity of the disorder, the individual's state of health, and their proximity to a treatment team, ARFID treatment is almost always done in an outpatient capacity.

ARFID treatment will always begin with the individual and his or her treatment team setting goals surrounding eating.

During ARFID treatment, a variety of therapies, services and interventions will address issues of both body and mind and depending on the clinic, may involve one or more of the following approaches:

Is often used with very young children and those on the autism spectrum. It involves a 'play time' approach which enables a child to feel comfortable with the feel, smell and sight of foods.

Is used to help remove the fear and anxiety attached to certain foods. This therapy involves relaxation techniques, mental visualization; writing and talking about the avoided foods; learning positive coping skills for overcoming the fear and anxiety surrounding food; and ultimately eating the avoided foods in a safe environment. As part of this therapeutic approach, a 'tiny tastes' reward programme might also be used away from mealtimes.

For some people, unhealthy thought and behaviour patterns are at the root of their eating disorder. ARFID treatment will likely include cognitive-behavioural therapy, or CBT, a "talk" therapy that helps individuals identify and change self-destructive patterns of thought and behaviour. CBT also treats anxiety, depression and obsessive compulsive disorder, which often co-occur with ARFID.

Dialectical behaviour therapy, or DBT, is another talk therapy commonly used in ARFID treatment. DBT helps people learn to live mindfully and within the moment in order to cope effectively with negative sensations and emotions. During DBT, individuals develop skills for distress tolerance that help them manage high-anxiety situations and identify the negative emotions they're feeling. By understanding and mindfully accepting negative feelings and emotions, people with ARFID are able to work through them in healthy ways.

Can be useful if it is carried out by a health professional as part of exposure and desensitisation programmes.

EYE MOVEMENT AND DESENSITISATION AND REPROCESSING THERAPY

(EMDR) therapy is an interactive psychotherapy technique used to relieve psychological stress. It is an effective treatment for trauma and post-traumatic stress disorder (PTSD) and there are indications that when used properly, it can be effective in treating ARFID.

During ARFID treatment, nutritional support is an important part of recovery. Nutritional support involves meeting with a registered dietician to identify any nutritional deficiencies and determine whether additional supplements are needed, although there may well be difficulties in getting the child to take them.

Group therapy for parents is often offered by Feeding clinics treating ARFID as an important part of AFRID treatment since the effects of ARFID are usually felt by the entire family.

Parent therapy is a great way for parents to learn more about ARFID whilst equipping them with tools to use at home. It also can provide parents with a sense of belonging and the opportunity to hear from other parents who are dealing with similar situations as themselves.

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If you or someone you love has been diagnosed with Avoidant/Restrictive Food Intake Disorder, treatment can help restore good physical and mental health and balanced eating habits. Since ARFID is a fairly new diagnosis, little is known about its optimal treatment.

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https://sensoryplaytoolkit.weebly.com/

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This page outlines the link between autism and eating disorders. It specifically looks at autism and anorexia nervosa, and autism and ARFID. We would like to thanks AMAZE for their support writing this webpage.

What is autism?

Autism is a neurotype or neurodevelopmental phenomenon that influences many aspects of living.

Autism can be experienced across a dynamic spectrum, impacting things like socialising, executive functioning, motor coordination, sensory processing, and language (i.e., speaking, non-speaking, partially-speaking, situational mutism).

Around one in 100 Australians is diagnosed with autism - around three times as many males as females (as assigned at birth), . Prevalence in the community is likely much higher due to inaccessibility and limitations around diagnosis.

Understand autism

Our friends at AMAZE have many resources to help autistic individuals and their families understand autism and find support.
Learn more

Autism, food and eating

It is common for autistic people to have atypical eating behaviours, with around 70% of autistic children having issues with food or eating (Mayes & Zickgraf, 2019).

Autistic individuals may have highly selective eating requirements or be particularly sensitive to the textures, look, smell or sound of foods, which can lead to food aversions. The social aspects of eating (such as sitting at a table with others, waiting until others are finished) can also be challenging. There may also be physical difficulties such as oral problems (difficulties chewing or swallowing) or gastrointestinal problems, which make eating a non-pleasurable experience.

Many of these characteristics are commonly seen in people with eating disorders, so researchers have sought to further understand the relationship and prevalence of autism in people with eating disorders (and vice versa) - especially in females who experience a higher rate of eating disorders and in whom autism may be under-diagnosed.

All types of eating disorders are experienced by autistic people, with most research currently focused on anorexia nervosa (including atypical anorexia) and , (Nimbly et al., 2022)

It is also worth noting that ADHD, another neurodevelopmental phenomenon that falls under the neurodivergent umbrella, frequently co-occurs with autism and vice-versa. ADHD is correlated with bingeing and purging eating disorder subtypes such as bulimia nervosa (Gesi et all., 2017, Bleck et al., 2015) ) and binge eating disorder (Levin et al., 2016, Curtin etc al., 2013) ). Therefore, it is important to keep in mind that the connection between different neurodivergent traits and eating disorders is complex and multidimensional.

Autism and anorexia nervosa

In the early 1980s , a researcher named Christopher Gillberg first identified a possible link between anorexia nervosa and autism.

It appears that up to 20-35% of women with anorexia nervosa meet the diagnostic criteria for autism (Brede et.al., 2020, Westwood & Tchanturia, 2017). Studies have also found that there may be a genetic or familial link between anorexia nervosa and autism and that the conditions have neurobiological links (Koch et.al., 2015).

It may be that body image is less of a concern for autistic people with anorexia but more so diet restriction as a coping mechanism to mask emotions and anxiety (Brede et.al., 2020). While not yet been picked up in the research literature, many autistic women also report using food restriction to gain social acceptance by meeting our society's emphasis on thinness. There may also be a tendency for repetitive behaviours taking the form of an intense interest (such as calorie counting or exercise) which develops into anorexia (Westwood & Tchanturia, 2017). Autistic people who restrict or avoid foods without a focus on weight or body image may be diagnosed with avoidant/restrictive food intake disorder (ARFID).

"I misinterpret [emotions] as physical symptoms and I get very anxious about it: Am I unwell? Am I going to vomit? And that's when I stop eating because I know that will dampen things down and calm them, so my emotions are feeding into my eating disorder behaviours, whereas I think my difficulties in perhaps coping with emotions stem perhaps more from the autism." (Brede et.al., 2020)

Autism and avoidant/restrictive food intake disorder (ARFID)

Avoidant/restrictive food intake disorder (ARFID) is defined by the   as an eating or feeding disorder characterised by a persistent and disturbed pattern of feeding or eating that leads to a failure to meet nutritional/energy needs.

ARFID is similar to anorexia nervosa in that a person restricts their food intake but the intent or reason behind the restriction is different, in that people with ARFID do not restrict food in order to avoid weight gain/control their body shape/size. Autistic people who are underweight or struggle to meet nutritional needs from food may meet the diagnostic criteria for ARFID.

ARFID is a fairly recent DSM-5 diagnostic category and specific research is limited. The prevalence rates of ARFID are currently unknown (estimates range from 5-60% of children being treated as an inpatient for an eating disorder) (Mayes & Zickgraf, 2019). ARFID is more commonly seen in children and adolescents but can occur in adults. There is no specific data on how many people with ARFID are also autistic, though there appears to be a strong correlation (Mayes & Zickgraf, 2019).

Things to keep in mind for autistic people with an eating disorder

Sensory

Autistic people may have reactions to what they see, hear, smell, touch or taste. T hey often have heightened sensory issues regarding the textures, look, smell and sound of foods compared to non-autistic people.

Routines, rituals and resistance to change

Autistic people may display repetitive behaviours, have a preference for routines and dislike change. For example, routines and rituals around food such as eating times, places and types of food can be less flexible or resistant to change.

Interoception

Interoception is the process of perceiving senses inside the body , such as hunger, thirst, fullness and pain. Autistic people may experience interoception confusion , which can make intuitive eating challenging.

Alexithymia

Alexithymia is having difficulty identifying and describing emotions and is common in autism. People with alexithymia may have a hard time pinpointing what emotion they are feeling and also not be able to communicate what they are feeling to others. This can make it hard for people to soothe themselves or get support from others and can make them more vulnerable to developing eating disorder symptoms as a coping mechanism ( Vuillier et.al, 2020).

"I'm not very good at judging my own emotions or physical sensations. I don't really fully understand my thirst and hunger responses, or my fullness responses, so that really influences my eating because I can binge or miss meals very, very easily." (Brede et.al., 2020)

Undernourishment and autism

Undernourishment due to anorexia nervosa or ARFID can increase autistic people's sensory-based difficulties, which has an impact on emotional responsiveness and mood . This can make it harder to accurately identify both autism and the eating disorder, due to the uncertainty as to the cause of the symptom. For some, behaviours may resolve or improve during recovery. Though there is a link, not all people with also have autism, so it is important to consult professionals who can use a range of criteria for diagnosis of autism and can recommend specific treatment protocols.

Autism as a consideration in the prevention of eating disorders

As our understanding of autism and eating disorders grows (and evidence that autistic traits appear in early childhood prior to the eating disorder ( Solmi et.al., 2020)) there is opportunity for prevention and early intervention . Treating disordered eating in autistic people early and implement support systems that are tailored to the needs of autistic people (i.e., neurodiversity-affirming care) is key. In addition, delivering psychoeducation education and training caregivers and professionals who engage with autistic people (e.g. school wellbeing teams), an important factor in helping to prevent the occurrence of eating disorders in autistic people.

Treatment and recovery for autistic people with eating disorders

Standard eating disorder treatments tend not to accommodate the specific needs of autistic people.

They may focus too heavily on weight or body image, involve overwhelming group settings, inpatient stays that disrupt routines and the need for in person visits to medical clinics that may be brightly lit, noisy and unfamiliar. Treatments that require a person to make dramatic changes to their eating routines in a short period of time may also be ineffective for people with autism who simply require more time and a more gradual process of change. Autistic people may require less food choices and more clarification around rules and expectations in recovery.

For this reason, identifying the presence of autism can make treatment and recovery of the eating disorder more effective. Autistic people experiencing eating disorders may need access to a treatment plan that is not only aware of their autism, but actively understands it and allows treatment to be responsive to the needs of the individual.

Overall, the recovery prospects and outlook are not any different to non-autistic people, but longer and more intensive treatment may be required. (Tchanturia et.al., 2019, Stewart et.al., 2017).

What's next for autism and eating disorders?

Understanding autism and other neurodiverse conditions (e.g. ADHD) as not being an impairment, but instead a functioning difference in the brain

This is especially important when supporting autistic people with eating disorders, as treatments for the eating disorder should be able to change depending on the needs of the individual. There is research currently being conducted in this area and hopefully in time more evidence-based treatment protocols will become available. In particular , t here is currently momentum growing around the concept of neurodiversity-affirming care.

Support for autistic people with eating disorders

If you or someone you care about is needing further support, please reach out to us at EDV. We support autistic individuals and their loved ones to find treatment pathways that are suitable to their individual needs .

EDV Telehealth Nurse

Let our telehealth nurses support your treatment planning. Nurses can connect you with the right professionals suitable for your unique needs.
Learn more

Learn more

Other support options

Amaze and free national autism helpline 1300 308 699 providing information, advice and referrals to help autistic people, their supporters and professionals.

Eating Disorders Neurodiversity Australia (EDNA) is an advocacy organisation that supports neurodivergent Australians affected by eating disorders. Read their report, Eating Disorders and Neurodivergence, here.

Eating Disorders Families Australia (EDFA) offers an ARFID support group. More information can be found

Peace (Pathways for Eating Disorders and Autism developed from Clinical Experience) has a great deal of information and resources for people with autism and eating disorders and their carers and clinicians.

Other Autistic-led organisations

Further reading

References

Bleck JR, DeBate RD, Olivardia R. The Comorbidity of ADHD and Eating Disorders in a Nationally Representative Sample. J Behav Health Serv Res. 2015 Oct 1;42(4):437-51.

Brede, J., Babb, C., Jones, C. et al. (2020). For Me, the Anorexia is Just a Symptom, and the Cause is the Autism: Investigating Restrictive Eating Disorders in Autistic Women. J Autism Dev Disord 50, 4280-4296.

Curtin C, Pagoto SL, Mick E. The association between ADHD and eating disorders/pathology in adolescents: A systematic review. Open Journal of Epidemiology [Internet]. 2013.

Gesi C, Carmassi C, Luciano M, Bossini L, Ricca V, Fagiolini A, et al. Autistic traits in patients with anorexia nervosa, bulimia nervosa or binge eating disorder: A pilot study. European Psychiatry. 2017 Apr 1;41:S100.

Gillberg C (1983) Are autism and Anorexia Nervosa related? British Journal of Psychiatry 142: 428.

Kinnaird, E., Norton, C. & Tchanturia, K. (2017). Clinicians' views on working with anorexia nervosa and autism spectrum disorder comorbidity: a qualitative study. BMC Psychiatry 17, 292.

Koch SV, Larsen JT, Mouridsen SE, Bentz M, Petersen L, Bulik C, Mortensen PB, Plessen KJ. (2015). Autism spectrum disorder in individuals with anorexia nervosa and in their first- and second-degree relatives: Danish nationwide register-based cohort-study. Br J Psychiatry. 206 (5):401-7.

Levin RL, Rawana JS. Attention-deficit/hyperactivity disorder and eating disorders across the lifespan: A systematic review of the literature. Clinical Psychology Review. 2016 Dec 1;50:22-36.

Mayes, SD, & Zickgraf, H. (2019). Atypical eating behaviors in children and adolescents with autism, ADHD, other disorders, and typical development. Research in Autism Spectrum Disorders, 64, 76-83.

Solmi, F F, Bentivegna, HB, William M, Radha K, Dheeraj R, David S, Glyn L. (2020). Trajectories of autistic social traits in childhood and adolescence and disordered eating behaviours at age 14 years: A UK general population cohort study. Journal of Child Psychology and Psychiatry,

Stewart CS, McEwen FS, Konstantellou A, et al. (2017) Impact of ASD Traits on treatment outcomes of eating disorders in girls. European Eating Disorders Review 25: 123-128

Tchanturia K, Larsson E and Adamson J (2016) How anorexia nervosa patients with high and low autistic traits respond to group Cognitive Remediation Therapy. BMC Psychiatry 16: 334.

Tchanturia, K, Adamson, J, Leppanen, J, & Westwood, H. (2019). Characteristics of autism spectrum disorder in anorexia nervosa: A naturalistic study in an inpatient treatment programme. Autism : The International Journal of Research and Practice, 23(1), 123-130.

Vuillier, L., Carter, Z., Teixeira, A.R. (2020). Alexithymia may explain the relationship between autistic traits and eating disorder psychopathology. Molecular Autism 11, 63

Westwood H, Mandy W and Tchanturia K (2017) Clinical evaluation of autistic symptoms in women with Anorexia Nervosa. Molecular Autism 16: 812.

Westwood, H., & Tchanturia, K. (2017). Autism spectrum disorder in anorexia nervosa: An updated literature review. Current Psychiatry Reports, 19(7), 41.

Need help?

Eating Disorders Victoria has put together a step-by-step guide take if you are concerned that you may be experiencing an eating disorder. It also covers how to talk to family or friends about what you're going through. Remember that you have the best chance of success if you include people you trust on your journey.
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Eating Disorders and Autism - Eating Disorders Victoria

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What's the link between eating disorders and autism? Get the research about autism and eating disorders including anorexia nervosa and ARFID.

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Did you know that Dialectical Behaviour Therapy skills can be useful for Autistic and ADHD individuals too?

As neurodivergent individuals, we often experience different types of distress from living in a society that isn't designed for our differences. It isn't just emotional distress but also meltdowns and sensory distress that we experience too. One of the best things we can do to support ourselves is manage our needs and respond to our distress in a way that works for us.

The best part? Each section is colour coordinated with an appealing colour to keep things colourful, engaging and sensory friendly. There's a whole bunch of different tools and worksheets too!

Not sure why you might want or need this workbook? Let me help you out. In this workbook, you can find skills to support you with:
This is where Dialectical Behaviour Therapy skills come in! Unfortunately, DBT skills aren't always accessible, straight-forward or neurodivergent friendly. That's why this workbook of DBT skills has been reframed to be neurodivergent affirming while incorporating sensory strategies, managing meltdowns, stimming and more. Written and designed by an autistic ADHDer, you can learn skills and tool using the five sections: It's also self-paced so if you're an individual, you can do it at home. If you're a professional, there's nothing stopping you from sharing this affirming workbook with a client or keeping this as a go to resource! About the author Sonny Jane (they/them) is multiply neurodivergent - or more specifically, an Autistic ADHDer living with Bipolar and in recovery with Borderline Personality Disorder. They're also an internationally recognised lived experience educator, consultant and advocate who's passionate about neurodiversity and supporting neurodivergent individuals.

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The Neurodivergent Friendly Workbook of DBT Skills

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Buy The Neurodivergent Friendly Workbook of DBT Skills by Wise, Sonny Jane (ISBN: 9798799480684) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Dr Gillian Harris has carried out research into infant and child feeding behaviour and appetite regulation at the University of Birmingham, School of Psychology for the past 38 years. She was also a Consultant Paediatric Clinical Psychologist for 30 years, and led a feeding clinic at The Children's Hospital, Birmingham, where she worked with infants and children who were food averse.

Her specific research and clinical interest is the development of food acceptance and rejection in early infancy and early childhood, and the effect of early experience on later food preferences. She has written around 100 published papers, articles and book chapters on these areas, and been awarded multiple research grants to support her research.

Past research studies have led to changes in the management of nutrition in children with specific illnesses (e.g. children with cystic fibrosis) or have led to the development of interventions, or parent information, for children undergoing specific treatments, (e.g. desensitizing and oral stimulation for children who are tube-fed in the first year of life), or for children with Avoidant/Restrictive Food Intake Disorder (ARFID). Her publications, and invited talks, have led to changes internationally, in the assessment and treatment of children with eating problems, and in weaning practices generally.

She has also frequently run, or contributed to, workshops or study days for groups of health professionals, or Special Interest Groups, both nationally and internationally, in which her research findings and research models are disseminated. Dr Harris also runs training days for health professionals organized by the National Autistic Society.

She is also a member of the Infant and Toddler Forum, a website devoted to giving evidence-based guidance to both health professionals and parents; her factsheets on food acceptance and refusal remain extremely popular (www.infantandtoddlerforum.org) and have been downloaded in their tens of thousands. Her latest Factsheet, Developmental Stages in Food Acceptance is proving similarly popular.

Her media work has been extensive. Most notably an ITV documentary 'My child won't eat', which centred on her work as a clinician with children with food refusal, was shown in June 2008. It attracted approximately 6 million viewers, and is still being shown around the world. Most recently she has appeared on 'Food Unwrapped', (Channel 4), advised on 'Doctor in the House' (BBC 2), spoken on 'The Food Chain' & 'CrowdScience' (BBC World Service), and on the Today programme (Radio 4).

Dr Harris has now set up a training and clinical service in collaboration with one of the leading Speech and Language Therapists in the field of food acceptance and refusal, and an expert psychologist in the field of autism. Dr Harris continues to specialize in research and interventions with children who are food averse and have very restricted diets; help for these children is given by training workshops or therapy via the Birmingham Food Refusal Service (www.foodrefusal.co.uk ). Her colleagues are a lead dysphagia Speech and Language Therapist (Sarah Mason) and a specialist psychologist working with ARFID and autism spectrum disorder (Dr Elizabeth Shea).

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

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Buy Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum Conditions: A Practical Guide for Parents and Professionals Illustrated by Gillian Harris and Elizabeth Shea (ISBN: 9781785923180) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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" ARFID Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers is an outstanding resource designed to help parents/carers understand the complexities of a diagnosis of ARFID, its consequences and treatment. This accessible guide combines clinical cases and up-to-date research. Bryant-Waugh's depth of experience working with children and families with ARFID brilliantly captures how to make sense of the everyday challenges that a diagnosis of ARFID brings to children and their families. This "go-to" resource fills a much needed gap in providing parents/carers with strategies in supporting their child with ARFID." - Debra K. Katzman , MD, Professor of Pediatrics, Hospital for Sick Children and University of Toronto

"This is a brilliantly written, clear, practical and engaging book by the world-expert in the field. It uniquely combines research and clinical wisdom, illustrated by multiple varied examples, to provide a comprehensive understanding of the problem and how to address it. The 5-step approach is exceptionally valuable with sequential guidance about how to enable positive change. It is essential reading for any parent or practitioner wanting to help children overcome these difficulties and is a fantastic resource that has the potential to transform lives." - Roz Shafran , Professor of Translational Psychology UCL Great Ormond Street Institute of Child Health

"This is a long overdue guide for parents. Dr Bryant-Waugh has been a leading clinical and research expert in feeding difficulties for many years, and it is pleasing to see this wealth of experience and advice into one volume. I have no doubt it will be extremely helpful for families and children with ARFID. The suggested approaches are positive, non-blaming and focused on hope, for this is key as many children will manage and improve, but a whole family and inspiration of confidence are needed. This book provides both." - Dr Lee Hudson , Consultant Paediatrician Great Ormond Street Hospital

" ARFID Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers is an outstanding resource designed to help parents/carers understand the complexities of a diagnosis of ARFID, its consequences and treatment. This accessible guide combines clinical cases and up-to-date research. Bryant-Waugh's depth of experience working with children and families with ARFID brilliantly captures how to make sense of the everyday challenges that a diagnosis of ARFID brings to children and their families. This 'go-to' resource fills a much needed gap in providing parents/carers with strategies in supporting their child with ARFID." Debra K. Katzman
, MD, Professor of Pediatrics, Hospital for Sick Children and University of Toronto, Canada

"This is a brilliantly written, clear, practical and engaging book by the world-expert in the field. It uniquely combines research and clinical wisdom, illustrated by multiple varied examples, to provide a comprehensive understanding of the problem and how to address it. The 5-step approach is exceptionally valuable with sequential guidance about how to enable positive change. It is essential reading for any parent or practitioner wanting to help children overcome these difficulties and is a fantastic resource that has the potential to transform lives."
Roz Shafran , Professor of Translational Psychology, UCL Great Ormond Street Institute of Child Health, London, UK

"This is a long overdue guide for parents. Dr Bryant-Waugh has been a leading clinical and research expert in feeding difficulties for many years, and it is pleasing to see this wealth of experience and advice in one volume. I have no doubt it will be extremely helpful for families and children with ARFID. The suggested approaches are positive, non-blaming and focused on hope, for this is key as many children will manage and improve, but a whole family and inspiration of confidence are needed. This book provides both."
Dr Lee Hudson , Consultant Paediatrician, Great Ormond Street Hospital, London, UK

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ARFID Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers

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ARFID Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers : Bryant-Waugh, Rachel: Amazon.co.uk: Books

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Luka loves judo, videogames and his guinea pig, Bruno. And he really wants to go to his first ever party- but what about the food there? Luka has ARFID (Avoidant/Restrictive Food Intake Diorder) and eats only a very small number of foods. If he can get help with his ARFID, and more important, if other people can learn to accept that he eats different food from them, will he finally be able to go to the party? A story of courage, resilience, and how we can become accepting of other people's differences. Luka and the Food Cloud was commissioned by De Montfort University to increase understanding of, and reduce stigma towards, ARFID (Avoidant/Restrictive Food Intake Disorder). All the proceeds of the book will be used to increase knowledge about this condition, and £1 from the sale of each book will be donated to the charity, ARFID Awareness UK. Early reviews of the book by individuals affected by ARFID: "Brought back memories of when I was that age, combined with the feeling that this is now out there to help people who have ARFID and their families. It just overwhelmed me with emotion" "It reflects our experiences so perfectly and it's the first time I feel we've been seen and heard in a book"

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Luka and the Food Cloud: A Story About ARFID

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Luka loves judo, videogames and his guinea pig, Bruno. And he really wants to go to his first ever party- but what about the food there? Luka has ARFID (Avoidant/Restrictive Food Intake Diorder) and eats only a very small number of foods. If he can get help with his ARFID, and more important, if ...

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Neurodiversity, Eating Disorders & Disordered Eating | NEDDE TRAINING

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A pioneering and innovative specialist training company founded by Bernie Wright and Lisa Smith, who have wealth of knowledge and expertise built up over many years of clinical practice in Eating Disorders, Neurodiversity and Nutrition.

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Sensory aversion can lead to dietary restrictions or avoidant restrictive intake disorder (ARFID), and is often linked to neurodivergence, says expert Lisa Smith. Hatty Willmoth writes.

Most people avoid some foods. It's not uncommon to turn a nose up at squidgy mushrooms, baulk at the idea of smelly smoked fish, or pick out coriander leaves to discard at the side of a plate.

But for those with food-related sensory issues, it's not a case of fussiness, but intense disgust at certain foods and fear at the prospect of eating them.

In some cases, this can develop into an eating disorder called avoidant restrictive food intake disorder (ARFID), where an individual avoids the vast majority of foods.

ARFID is characterised by sensory aversion to the textures, tastes, smells and appearances of some foods, as well as a fear of choking, vomiting, or other consequences of eating, a fear of new foods, and a lack of interest in eating.

It's a little-known eating disorder, but that might be changing; the Guardian reported in February 2024 that calls to the UK's leading eating disorder charity, Beat, have risen sevenfold in the last five years.

And this may be - at least partially - because of the links between sensory issues, ARFID, and neurodivergence.

Links between neurodivergence and ARFID

Lisa Smith is a functional nutritionist who specialises in neurodiversity, eating disorders and disordered eating. She's also a co-founder of NEDDE (neurodiversity, eating disorders and disordered eating), which trains nutrition and mental health professionals to better support neurodivergent clients.

'Neurodivergent' can be used to describe individuals whose brains function in a way that isn't typical. It's a nonmedical term without a strict definition, but it commonly refers to people with autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD), and sometimes refers to those with other conditions such as Tourette syndrome, dyslexia, learning disabilities, certain mental health conditions, or something else.

Smith says that ARFID often "goes hand in hand with some form of neurodivergence" and that the two are closely linked.

For instance, she says, "a lot of autistic people have issues with oral motor: chewing".

"[They might have a] swallowing issue as a follow-on from that," she adds, "especially if they've had any experience of choking because they haven't chewed something properly."

This may prompt individuals to avoid foods which require more chewing or which they consider a choking hazard - and it's a possible symptom of ARFID.

Hypersensitivity, sensory overload and autism

Hypersensitivity is another possible link between ARFID and neurodivergence. Common in people on the autistic spectrum, hypersensitivity is when the senses are heightened to the extent that sensory input can feel overwhelming or uncomfortable - including the texture, taste, smell and appearance of food.

"Food's a multi-sensory assault on the body," says Smith. In a neurotypical world which a neurodivergent individual may find "demanding", "challenging" and "anxiety-inducing", she explains, many feel the need to avoid foods which might contribute towards sensory overload.

As such, neurodivergent individuals may develop a restrictive diet, or even ARFID, and this can come with health consequences.

Restrictive diets can lead to nutritional deficiencies, which Smith says can "starve the brain" of vital nutrients and thereby "magnify neurodivergent behaviour".

Plus, people with ARFID and some form of neurodivergence tend to gravitate towards foods which are nutritionally poor.

Smith says: "If you have something that offers you predictability, consistency, and that doesn't challenge you in any way, obviously you're going to be drawn to that.

"Unfortunately, the most predictable foods are [ultra-processed foods and fast food]. If you think of MacDonald's, they taste the same wherever you are in the world, so you don't have to get any more overwhelmed."

Hyperfixation cycles and ADHD

Beyond hypersensitivities, many neurodivergent individuals develop hyperfixations, especially if they have ADHD.

From the outside, a hyperfixation may seem like an obsession; in food terms, a person may choose to eat the same meal over and over again.

It's comforting, says Smith, but hyperfixation foods are often low in micronutrients, heavily processed, and high in sugar, refined oils and salt.

"Quite often with ADHD, that's what it is," she says. "Because [the foods have] that sugar, fat, salt in them, it's going to actually interact with [dopamine] receptors.

"A neurotypical might go, 'ooh, I really like that'. For an ADHD person with a dopamine deprived brain, the reward that they will get from that food will be greater."

But hyperfixations can end in an instant. A food will lose its feel-good factor, says Smith, and then a neurodivergent person may wish to avoid it completely - which can become another road to restriction.

Add foods, don't take them away

But Smith says that the number one rule for helping neurodivergent individuals with restrictive diets or ARFID, is that they should be allowed to continue eating the foods they already like.

"Don't ever take away those 'safe' foods," she says, "especially within ARFID. It's always about what you're putting in, not taking out.

"Even if they're only eating cornflakes, they're eating." This is absolutely crucial when working with children, she says, but with neurodivergent adults too, it is not usually worth trying to enforce a perfectly balanced diet.

"What you need to do is work with that individual," says Smith. "You have to find out, what are the acceptable tastes, textures, smells, and then look at what they are eating and say: 'How can we make what they are eating just a bit more nutritious?'.

"I have one client where everything needed to be crunchy. Well, great! Let's dehydrate food. Let's make it crunchy.

"It's working with them; changing the environment to the individual, not trying to force the individual into the environment."

How to tackle ARFID with food chaining

Once it's clear what that person likes and dislikes, change can begin to happen - but it must be slow.

Smith says a technique called 'food chaining' can be quite effective, to diversify the diet with tiny steps that don't feel too overwhelming.

For example, she explains, a neurodivergent individual may eat fast food beef burgers. So, the first change might be buying one of those burgers but swapping the bap.

Once they're used to that, the burger could be swapped with a supermarket option; then made at home; then eaten without the bap.

Smith says: "It's about slow changes, and you always try to keep things looking the same or tasting the same, [and just] make it more nutritious.

"Because if you've got it looking the same, at least then that's one sense that somebody hasn't got to work with."

Similarly, if someone eats pasta with a tomato-based sauce and cheese on top, Smith might switch 10% of their pasta with a higher protein pea-based pasta in the same shape. Over time, that percentage can be gradually increased, increasing the dish's protein content.

Smith says: "What you're doing is slowly changing the nutritional value of that meal. It needs to be done slowly. If you do it straightaway, it's going to be too much of a challenge...

"When you're looking at especially autism and ARFID, just the thought of the change could be anxiety-inducing."

Don't be afraid of unconventional combinations

Working with neurodivergent individuals with restrictive eating challenges may mean embracing some bizarre food combinations - throwing the 'food rules' out the door, as Smith says.

"I've had a client that, everything had to be in tomato ketchup. Well, fine. That's absolutely fine. Eating broccoli dipped in tomato ketchup is better than not eating broccoli at all.

"I have people that have banana and marmite sandwiches. That's absolutely fine. If the marmite covers up the taste - or whatever it is - then, fine. Have that.

"You can use the marmite there - or whatever their key thing - to smother other foods in. And then you can start to slowly reduce the marmite."

But hiding foods is something neurodivergent people must do themselves; well-meaning parents, relatives or friends should not try to trick them into eating foods they prefer to avoid.

Smith says: "That can cause a problem, because the individual finds out and then the trust has gone... If they thought [their food] was one thing, and ... realised it was another, that would be a challenge they weren't ready for."

Neurodivergence is just different wiring

The final nugget of wisdom Smith advises is to focus on improving health, not fixing neurodivergence itself.

"If you are neurodivergent, you are neurodivergent. You're not broken. You don't need mending. It's just different wiring," she says.

"I still get clients that come to me and say: 'I want you to cure my son's autism.' And I say: 'Well, your son is autistic. That isn't going to change. What we can do is help by installing coping mechanisms, helping him to understand, looking at the environment.'

"A neurodivergent interacts with the world in a different way to a neurotypical, but they live in a neurotypical world."

Neurodivergence isn't new - but awareness is

As for the increase in calls to eating disorder charity Beat for ARFID, Smith believes this could be down to increasing awareness around neurodivergence - particularly for people on the autistic spectrum and with ADHD.

"We're looking at neurodivergence differently," she says. "Previously, it was always thought to be teenage boys, whether it was autism or ADHD.

"Before, all the studies were done on young adolescent males, and if you didn't fit that criteria, you didn't get the diagnosis.

"Everybody saw the boy that was charging around the classroom being disruptive, but what they didn't see was the girl in the corner colouring away in her own little world, because she was quiet.

"Some people say: 'It's a new thing. Everyone's got neurodivergence. It's a new trend.' Actually, it isn't ... we're measuring it against a different thing..."

Neurodivergent clients? A message to practitioners

Smith also wants to encourage nutritional therapists and other healthcare practitioners to embrace working with neurodivergent clients.

"I often speak to nutrition professionals that say they don't work with eating disorders, or they don't work with neurodivergent individuals," she says.

"My comment would be, yes, you do, but you're not asking the right questions." She says that neurodivergent people often try to 'mask' - "like acting" - to appear neurotypical.
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"The problem is, if they are given a neurotypical set of recommendations, we're almost setting people up for failure, which is the last thing that a neurodivergent person needs, because they live in this neurotypical world that isn't necessarily friendly to them."

Enjoyed this article?

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Neurodivergence and ARFID: a nutritional approach to sensory issues

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Sensory aversion can lead to dietary restrictions or avoidant restrictive intake disorder (ARFID), and is often linked to neurodivergence, says expert Lisa Smith.

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Somerset and Wessex Eating Disorders Association (SWEDA), England, UK

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Somerset and Wessex Eating Disorders Association (SWEDA) provide support for anorexia, bulimia nervosa and binge eating disorders.

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Ep. 12. Let's Chat ARFID and Eating Disorders

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Listen to this episode from Let's Chat Derbyshire on Spotify. In this episode, we speak with Holly from First Steps Eating Disorders about ARFID as an eating disorder and also about how First Steps can support you through this.

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Bristol & BANES ARFID Group, Bristol. 16 likes · 6 talking about this. Raising awareness and creating local support for parents and carers of children with ARFID.

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Our guidance aims to help you address common eating difficulties for autistic people.

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Overeating: why it happens in autistic children and teenagers

Overeating is when children eat too much. Some autistic children might graze all day, and some might eat too much at meals.

If your child has overeating habits, it's good to work out why. This can help you manage your child's eating behaviour.

Some children eat more because their medicine increases their appetite. Your child's GP or paediatrician will be able to tell you if this is an issue for your child.

If there are no medical reasons, your child might be overeating for one or more of the following reasons:

Habit: is your child snacking at particular times of the day? While watching TV? On the computer? When they don't have anything else to do? Keeping a diary for a few days will help you see whether there's a pattern to your child's snacking.

Obsessions with food: is your child's overeating more than a habit? Your child might have an obsession with a particular food, which they can't control. If your child overeats at mealtimes and wants an excessive amount of food, they might be showing signs of compulsive behaviour.

Unpredictable mealtimes: if your child doesn't have set mealtimes, they might be more likely to snack throughout the day.

Sensory sensitivities: for example, if your child likes soft textures, they might regularly seek out soft foods and eat too much of them.

Emotional regulation: for example, your child might eat more food when they're feeling anxious or sad.

Our dietary guidelines can help you work out whether your child is getting the right portion sizes for their age: food for children 2-3 years, food for children 4-8 years, food for children 9-11 years, food for children 12-13 years and food for teens 14-18 years.

Managing overeating in autistic children and teenagers

The best strategies for autistic children and teenagers who overeat depend on what's causing the overeating.
Overeating because of habits

Keep 'problem' or snack foods out of reach. This can encourage your child to snack less. If your child is older, or particularly good at reaching hidden spaces, you might need to keep these foods out of your house.

Have some of your child's favourite activities handy to keep your child busy until it's time for a regular meal or snack. This can be good if your child snacks when they're bored.

Encourage your child to do some physical activity as part of a balanced, healthy lifestyle. You could try making this part of your child's daily routine, perhaps at a time of day when your child might otherwise want to snack.

Overeating because of compulsions
If you think your child's overeating might be because of obsessions or compulsions, try to limit how much food you put on your child's plate, and how much food is in sight.
Overeating because of unpredictable mealtimes

Aim for regular mealtimes. This can help your child adjust to eating certain quantities of food at certain times. While your child is getting used to the new mealtime routine, it can help to have some low-fat, low-energy snacks handy, so that your child is neither too hungry nor too full at the next meal.

Make sure that your child drinks plenty of water throughout the day, especially between mealtimes. Sometimes children think they're hungry when they're just thirsty.

Overeating because of sensory sensitivities
If your child seeks out sensory sensations, try to replace one sensory object (food) with another (non-food). For example, if your child likes the feeling of soft substances in their mouth, you could make time each day for your child to play with playdough with their hands instead.

Overeating because of emotions
If you think your child overeats as a way of regulating their emotions, you can help your child learn how to recognise, understand and manage their emotions in healthy ways.

Some autistic children will mouth or eat non-food items, like dirt, hair, coins, soap or fabric. This is called pica. You could try replacing non-food items with snacks, and praise your child whenever they choose a food item rather than a non-food item. If you're finding it difficult to manage your child's pica, speak to your child's paediatrician or other health professional.

Getting help for overeating in autistic children and teenagers

A healthy weight is important for your child's overall health and development. If your child overeats, they might be at risk of childhood overweight and obesity or teenage overweight and obesity.

If you're concerned about your child's weight or eating behaviour, it's a good idea to talk with your child's GP or paediatrician or a dietitian. They can also refer your child to other professionals like psychologists if your child needs extra help with their behaviour or emotions.

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Overeating: autistic children and teenagers

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Some autistic children and teenagers have overeating habits. Keep snack foods out of sight, replace snacks with other activities and aim for regular meals.

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Eating behaviour in autistic people | Expert webinars | Autistica | Autistica

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Key findings from the Autistica webinar exploring eating behaviour in autistic people and Avoidant Restrictive Food Intake Disorder (ARFID)

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By Dr. Michelle Garnett and Professor Tony Attwood

We know that autism is a risk factor for both mental and physical health conditions. One study (Lever & Gertz, 2016) found that up to 79% of autistic adults met diagnostic criteria for a mental health condition, including depressive, anxiety and eating disorders. We also know that many autistic individuals struggle to emotionally self-regulate (use internal strategies to calm down, like breathing) and to co-regulate (be soothed by another person), so they find other ways to self-soothe or feel OK, and one example is by eating or not eating.

Sensory sensitivities are extremely common in autism, so much so that they form part of the diagnostic criteria (APA, 2022). Eating involves all five senses and interoception, or the capacity to sense internal bodily sensations such as hunger and satiation. It is perhaps unsurprising that eating disorders are overrepresented in the autistic population. In this article we discuss the prevalence of eating disorders in autism, why this is the case, and why it is important to routinely screen for autism in clinics that treat eating disorders, and to carefully assess the possibility of eating disorders in clinics that specialise in neurodiversity, including autism.

Prevalence of eating disorders in autism

The eating disorders most associated with autism are anorexia nervosa, Avoidant Restrictive Food Intake Disorder (ARFID) and Pica. A recent study found that up to 35% of women in an inpatient unit for anorexia nervosa (AN) are likely to be autistic, based on a screening questionnaire, compared to 20% in the outpatient unit and 2% in the general population (Tchanturia, 2021).

ARFID has only recently been added to international definitions of eating disorders (APA, 2022) and estimates of co-occurring ARFID and autism range from 12.5% to 33.3% (Harris et al., 2019; Inouye 2021), compared to 1.5% in the general population. Pica is diagnosed when the person persistently eats non-food substances for over 1 month. Pica is more commonly associated with autism than with any other condition.

Bulimia nervosa and binge-eating disorder occur most often in individuals with ADHD, due to difficulties resisting the impulse to binge or to purge. However, we know that autism and ADHD commonly co-occur with a recent meta-analysis showed the range across 63 studies of between 40 and 70% (Rong et al, 2021) and studies are increasingly recognising an 'autism-ADHD phenotype' (Craig et al, 2016). This association of autism with ADHD, the lack of studies on bulimia and binge-eating disorder in autism, and that it is common to experience another eating disorder across the lifetime if one has already experienced one (e.g. Eddy, et al 2013) are factors that encourage us to screen for bulimia and binge-eating disorder in autistic individuals, in addition to AN, ARFID and Pica.

Possible pathways to an eating disorder if you are autistic

Sensory sensitivity

One of the diagnostic criteria of being autistic is having a sensory system that works differently (APA, 2022). This means that an autistic person is more likely to have hyper or hypo sensitivities for the taste, texture, sight, sound, and smell of food. One pathway to an eating disorder is the different sensory system, leading to restrictive eating practices to avoid certain sensory experiences, for example, experiencing the look of many types of food as being disgusting, or the texture, taste or smell as intolerable. Conversely sensory seeking behaviours can lead to overeating certain types of food for the sensory experience, for example, adoring the taste of sweet food, or foods of a certain texture or "feel" in the mouth.

We also know that autistic individuals experience differences in interoception, or the perception of internal body sensations. For some autistic people, the sensations of feeling food in the body, sensations of digestion, bloating, nausea, or constipation, are intolerable, and therefore eating is meticulously avoided as much as possible. There can also be difficulties interpreting the feelings of hunger and fullness, leading to problems of under eating initially, but then overeating because the person only registers feeling hungry when they are ravenous, and then does not feel full until they have eaten too much. Without the internal cues of hunger and satiation, the person may struggle to establish a regular eating routine.

The person may enjoy the feeling of being 'empty', that is having no food in them, and feeling lighter. The choice to restrict food is to pursue this enjoyable sensory experience.

Social difficulties

Unfortunately, many autistic individuals in our society experience loneliness (Henriksen et al 2017), bullying, and abuse (Rumball, 2019). They may use restrictive eating patterns as a way of distracting themselves from these difficulties, and to numb the emotional pain. As one autistic person with anorexia nervosa said, I could get engrossed in food and exercise, and just forget about everything else.

Conversely, they may use comfort eating to overcome difficult feelings associated with socialising. Many social occasions are paired with eating. Socialising can be difficult and anxiety-provoking for an autistic person. It is difficult to eat when you are overwhelmed and anxious. The beginnings of an eating disorder may be traced to avoidance of eating in social situations, and then enjoying the resulting consequences of not eating. For example, the sensory experience of being 'empty' or 'light,' or the experience of losing weight, or avoiding feeling nauseous.

Self and identity

Eating disorders often begin in puberty, just as the social world becomes more complex and the autistic person experiences more problems navigating changing social expectations and trying to connect with their peers and 'fit in.' They often feel very different from their peers and may become immersed in an eating disorder as a way of coping. They may believe that they do not fit in socially because of their body or their appearance, so seek to change both. It is common for teenagers to connect with peers through a common interest, but an autistic teenager may not be able to connect with the interests of non-autistic groups. As they become more fascinated with eating disorder behaviours, they may become accepted in a peer group that embraces this culture. Some autistic teenagers will focus on dieting and appearance as a way of being included, and to build a sense of identity.

Sometimes restrictive eating can commence because the person seeks to remain asexual and androgynous, fearing change and disliking the body changes that start to occur due to puberty. For example, the person may be afraid of becoming an adult and the changes this will bring to their lives, feeling incapable of getting a job or living independently, and so may seek to stay in their childlike body.

Disliking and resisting pubertal body changes can also be related to gender dysphoria, for example, when a teenage girl intensely dislikes growing breasts, and developing a feminine physique, so ceases eating to try to stop the process.

Traumatic interpersonal incidences including rape and sexual assault occur more often to autistic people (Kerns et al 2016). Either increasing or decreasing body weight may be chosen as a strategic defence against any future sexual harassment or abuse. Excess weight can be seen a defence, a barrier to a predator, and being under-weight can be a way of seeming asexual or non-sexual.

We have found that autistic people often experience difficulties discerning the character or personality of others, including their own personality. They often define themselves in terms of their interests and knowledge, rather than in terms of personality descriptors or social roles, such as mother, daughter, or friend. This difficulty with conceptualising the self can lead to over-reliance on a self-definition in terms of physical appearance, including their weight, rather than their character and personality qualities.

Emotional difficulties

Children and teenagers can find out early on in their life that they can regulate their emotions by controlling their food intake. In childhood there are few other options for this. We hope that the child can regulate themselves through co-regulation, that is they are able to seek support and comfort from a primary caregiver.  Sometimes, due to the social difficulties in autism that can affect family relationships, the autistic child may prefer to self-regulate alone. They may simply not think to seek the comfort of a parent, or they may dislike the offered comforts, such as a hug or increased physical contact, or talking about the problem. When trying to self-regulate alone does not work, they can seek other methods, including restricting their eating, eating non-food substances (Pica) or over-eating certain foods. Restrictive eating often leads to emotional numbness, which is seen by an autistic person as a positive outcome.  Overeating can be experienced as soothing and comforting. One of the reasons for Pica may be a sensory seeking behaviour to block an uncomfortable or painful emotion.

Intolerance of uncertainty can be a trigger to dieting or food restriction. As life becomes more complicated, with the increased changes and transitions of high school, and increased social expectations in the adolescent years, there is a considerable level of uncertainty. Controlling one's food intake and exercise output can be a coping mechanism against the high levels of anxiety that come along with uncertainty.  As one autistic adult said, I highly value predictability and consistency. One way I can achieve this in my life is by controlling what I eat, and how many calories I burn.

Thinking styles

Part of the international definition of autism is rigidity in thinking (APA, 2022). Once an autistic person has made a decision, they can be very determined and stay with the decision, despite data and persuasion to the contrary. For example, the person may decide that their life is far easier and simpler if they follow the rules dictated by the eating disorder and are therefore very reluctant to change.

There are other types of thinking that are characteristic in autism and may be a risk factor for developing an eating disorder. For example, black-and-white thinking. The person may think if I am not thin, then I am fat, and sees weight as a dichotomy, rather than a range of acceptable weights. They can stick very rigidly to a single number on the weighing scale, as being the only desirable number, even though that number puts them at a life-threatening weight. Part of the rigidity of thinking can be what we have called in the past the "Frank Sinatra Syndrome", or "My Way". Once the person has decided on their beliefs about their weight, the rules around their eating and exercise patterns, they can be very rigid. They are not open to other people's advice or opinions, even if these are based on scientific evidence.

An autistic person tends to be a systematic thinker, very good at recognising patterns and devising systems. They can be very attracted to a systematic way of eating and managing weight, where they can easily establish and have clear rules to follow about what to eat, how much to eat, and how much exercise to engage in.

Enthusiasms and passions

One of the qualities of autism is the intensity of the interests the person can develop, and the pleasure that these interests bring. One of the reasons eating disorders can develop is because of an intellectual fascination with eating and its effect on the body, as well as the numbers involved, for example in terms of calories for different foods. They may enjoy exploring eating patterns, rules, and weight. They may keep schedules and spreadsheets or use Apps to record progress. Entering numbers and seeking patterns can be a very enjoyable aspect of their interest. The eating disorder practices become a source of enjoyment, and they embrace being an expert in the eating disorder. Their expertise and commitment are admired by others with an eating disorder. Social media can be a way of sharing their knowledge and gaining dopamine through the number of 'likes' achieved on their social media page.

Why screen for autism in eating disorder clinics and hospitals?

There is gathering evidence that it is helpful for autistic people to know that they are autistic, to increase their own self-understanding, self-acceptance, and recovery from mental health disorders (Bradley et al, 2021, Harmens, Sedgewick & Hobson, 2022). Specifically related to eating disorders, Professor Kate Tchanturia, Lead Clinical Psychologist for the National Eating Disorder Service, UK, and Professor in the Psychology of Eating Disorders at Kings College, London, says that the first 'take-home message' from all the research to date is that knowing the person is autistic is helpful when treating eating disorders. As she says, "If we can 'see it,' we can 'say it'.... and we can 'sort it,' to support people with both conditions" (p.16, Tchanturia, 2021). There is research to show that adjusting treatment of eating disorders to accommodate the characteristics of autism, not only increases the success of the treatment, but also decreases the cost of delivery of the treatment (Tchanturia, et al 2021).

As Pooky Knightsmith said:
The label gave my treatment team permission to revise the way they treated me, and to realise that sometimes we had to turn the typical approach on its head in order to make progress with me. The label also helped me to begin to understand myself and helped me to make sense of a lot of the difficulties I've faced day to day my whole life. Being able to view myself through this new lens was incredibly helpful and allowed me to be a little kinder to myself and to begin to rethink my approach to many things. The label also gave me a community I could identify with and an avenue into learning, how best to support myself day today (p. 37, Ch. 3 Anorexia and Autism, Tchanturia, 2021).
Why screen for eating disorders in clinics that specialise in autism and ADHD?

Being autistic means that developing an eating disorder is more likely than if you are not autistic. Many eating disorders are secretive, and therefore hidden from view and the autistic person or person with ADHD may not tell their clinician that they are suffering in this way. In anorexia nervosa the eating disorder is ego-syntonic, that is, it is experienced as being a part of or the whole of their self-identity, but they are aware that a psychologist may wish to assist them to recover from an eating disorder, so they will hide their disorder.

Anorexia Nervosa carries the highest mortality rate of any mental health disorder at 10-20%, with suicide and the effects of starvation being the key causes of death respectively (Bernstein, 2023). The burden on the family for anorexia nervosa is higher than for schizophrenia or depression (Martin et al, 2015). Mortality rates are 1.9, 3.8, and 1.5 times higher than for an age-matched sample for bulimia, Eating Disorder Not Otherwise Specified (EDNOS) and binge-eating disorder respectively (Quadflieg, Strobel & Naab, 2019, Fichter & Quadflieg, 2016). In addition to mortality and family burden there are other costs, including that "quality of life is reduced, yearly healthcare costs are 48% higher than in the general population, the presence of mental health comorbidity is associated with 48% lower yearly earnings, the number of children is reduced, and risks for adverse pregnancy and neonatal outcomes are increased" (p. 521, Van Hoeken & Hoek, 2020).

Accurate diagnosis of an eating disorder with neurodiversity in a neurodivergent person will lead to more accurate interventions and support for these conditions, and therefore, better outcomes. These better outcomes include saving people's lives and helping them and their families lead happier and more fulfilled lives.

Where to from here?

As clinical psychologists, we have been working with autistic individuals with eating disorders for a combined 80 years and have discovered some important ways to help. In our online course Eating Disorders and Autism we share these with you, along with important recent research in the area. The course was created for parents and carers, autistic adults with eating disorders, as well as health and educational professionals who see people (whether they are neurodiverse or eating disordered or not because they may be either or both).
ONLINE COURSE: Eating Disorders and Autism
References

APA, (2022). Diagnostic and Statistical Manual of Mental Disorders 5th edition Text Revision (DSM-5-TR), USA: American Psychiatric Association.

Bernstein, B. (2023). Anorexia Nervosa, Pediatrics: Developmental and Behavioural articles, Medscape, https://emedicine.medscape.com/article/912187-overview#a6?form=fpf

Bradley L, Shaw R, Baron-Cohen S, Cassidy S. Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health. Autism Adulthood. 2021 Dec 1;3(4):320-329. doi: 10.1089/aut.2020.0071. Epub 2021 Dec 7. PMID: 36601637; PMCID: PMC8992917.

Craig F, Margari F, Legrottaglie AR, Palumbi R, de Giambattista C, Margari L. A review of executive function deficits in autism spectrum disorder and attention-deficit/hyperactivity disorder. Neuropsychiatr Dis Treat. 2016 May 12;12:1191-202. doi: 10.2147/NDT.S104620. PMID: 27274255; PMCID: PMC4869784.

Eddy KT, Dorer DJ, Franko DL, Tahilani K, Thompson-Brenner H, Herzog DB. Diagnostic crossover in anorexia nervosa and bulimia nervosa: implications for DSM-V. Am J Psychiatry. 2008 Feb;165(2):245-50. doi: 10.1176/appi.ajp.2007.07060951. Epub 2008 Jan 15. PMID: 18198267; PMCID: PMC3684068.

Fichter MM, Quadflieg N. Mortality in eating disorders - results of a large prospective clinical longitudinal study. Int J Eat Disord 2016; 49:391-401.

Miriam Harmens, Felicity Sedgewick, and Hannah Hobson.The Quest for Acceptance: A Blog-Based Study of Autistic Women's Experiences and Well-Being During Autism Identification and Diagnosis. Autism in Adulthood.Mar 2022.42-51.http://doi.org/10.1089/aut.2021.0016

Harris, A. A., Katzman, D. K., Norris, M. L., & Zucker, N. L. (2019). 1.50 Avoidant/Restrictive Food Intake Disorder (ARFID) AND ASD. Journal of the American Academy of Child & Adolescent Psychiatry, 58(10, Supplement), S162-S163. https://doi.org/10.1016/j.jaac.2019.08.072

Henriksen, I. O., Ranøyen, I., Indredavik, M. S., & Stenseng, F. (2017). The role of self-esteem in the development of psychiatric problems: a three-year prospective study in a clinical sample of adolescents. Child and Adolescent Psychiatry and Mental Health, 11, 68. https://doi.org/10.1186/s13034-017-0207-y

Inoue, T., Otani, R., Iguchi, T., Ishii, R., Uchida, S., Okada, A., Kitayama, S., Koyanagi, K., Suzuki, Y., Suzuki, Y., Sumi, Y., Takamiya, S., Tsurumaru, Y., Nagamitsu, S., Fukai, Y., Fujii, C., Matsuoka, M., Iwanami, J., Wakabayashi, A., & Sakuta, R. (2021). Prevalence of autism spectrum disorder and autistic traits in children with anorexia nervosa and avoidant/restrictive food intake disorder. BioPsychoSocial Medicine, 15. https://doi.org/10.1186/s13030-021-00212-3

Lever, A. G., & Geurts, H. M. (2016). Psychiatric co-occurring symptoms and disorders in young, middle-aged, and older adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46, 1916-1930. https://doi.org/10.1007/s10803-016-2722-8

Kerns CM, Newschaffer CJ, Berkowitz SJ, Lee BK. (2017). Examining the association of autism and adverse childhood experiences in the national survey of children's health: The importan

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The Association of Eating Disorders with Autism

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By Dr. Michelle Garnett and Professor Tony Attwood We know that autism is a risk factor for both mental and physical health conditions. One study (Lever & Gertz, 2016) found that up to 79% of autistic adults met diagnostic criteria for a mental health condition, including depressive, anxiety and eating disorders.

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also on Spotify - https://open.spotify.com/episode/70ua4i4Mw4wgu1lu0KE8pn

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Food Sensitivities and Proclivities – Episode 6 ‘Autism, a parents guide’ with Dr. Vicki Ford

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Podcast Episode · ‘Mind the Kids’: an ACAMH podcast · 28 May 2020 · 53min

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BBC Radio 4 - All in the Mind, Should we take teens more seriously? And the link between eating disorders and autism

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Should we take teens more seriously? And the link between eating disorders and autism.

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national disability affairs reporter Nas Campanella and the Specialist Reporting Team’s Rhiannon Hobbins

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Traditional treatment for eating disorders left Lisa traumatised. She wants other neurodivergent people to know ‘there’s a way out’

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Many neurodivergent people with eating disorders say traditional treatments haven’t considered their unique needs. Now there’s a push towards a more tailored approach.

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A series of mini videos about different aspects and interventions

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Avoidant/Restrictive Food Intake Disorder (ARFID) :: Cheshire and Wirral Partnership NHS Foundation Trust

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These resources are aimed at Autistic children and young people and those with intellectual disability who have diagnosed or suspected ARFID (Avoidant/Restrictive Food Intake Disorder).