By Dr. Michelle Garnett and Professor Tony Attwood
Restrictive eating disorders, such as Avoidant/Restrictive Food Intake Disorder (ARFID) and anorexia nervosa are the most common eating disorders experienced by autistic individuals. Research shows rates of around 30% of those treated for these disorders in eating disorder clinics are autistic (Tchanturia, 2021; Harris et al, 2019; Inoue, 2021). We know that it is extremely helpful to understand if the person is autistic because greater gains are made in treatment when modifications are made for autism. Adapting treatment requires a tailored approach that considers the person’s unique needs and challenges. Below we describe modifications that have consistently emerged in the literature we have to date, and that we use in to inform our own practice.
Sensory Accommodations
Autistic individuals often have sensory sensitivities that can influence their eating behaviours. Accommodate a different sensory processing system through:
Sensory-Friendly Foods: Incorporate foods with textures, temperatures, and flavours that the person can eat. This advice is different to treatment-as-usual for anorexia nervosa because aversion to foods is usually interpreted as an eating disordered rule that needs to be challenged. It is also important to include sensory-friendly foods into the person’s meals to add enough calories for restoration to normative brain function.
Gradual Exposure: Slowly introduce new foods in a way that respects the person’s sensory experience. ARFID is defined in part by aversion to foods due to sensory processing difficulties, in addition to anxiety about the consequences of eating certain foods. Many autistic individuals with anorexia have similar experiences. Sensory processing difficulties are accentuated by high levels of anxiety and stress. A slow introduction to foods that are aversive because of sensory processing issues needs to respect and validate the person’s sensory experience in a calm environment that is supportive of being very brave and trying something extremely difficult to do. It is important to remember that a person’s sensory processing system does not habituate to aversive experiences via exposure, in the way that anxiety can reduce with exposure to the feared stimulus. There may be certain foods that the person’s sensory system will never tolerate. However, with reduced levels of anxiety, the person may be able to tolerate a broader range of food items, and internal sensations, leading back to being weight-restored and well-nourished.
A sensory-friendly clinic and ward. Talk to the autistic person about what they find difficult or painful about the sensory aspects of the treatment environments and places where they will be eating at home. Modifying these environments to suit the person’s sensory system is highly likely to lead to reduced background stress and anxiety, allowing the person more mental space to gain from therapy and recover.
Routine and Predictability
Many autistic people thrive on routine and predictability, even if they are also ADHD and need novelty. If events are planned, for e.g. therapy appointments, outings, and ward activities, it is very important to follow through on these events. When the schedule changes, including the meal process, timing and/or ingredients, wherever possible, give advance notice of the change. If that is not possible, address the distress that may be occurring afterwards.
Structured Meal Plans: Establish consistent mealtimes and routines to reduce anxiety around eating.
Visual Schedules: Use visual supports to outline the meal process, helping the person to know what to expect.
Communication Adaptations
Communication styles need to be adjusted to suit the individual.
Clear and Direct vs Indirect Language: Most autistic people respond best to straightforward and unambiguous language. Using inference and/or only nonverbal communication can be confusing and hence stressful. However, if the autistic person has a PDA profile, the best communication approach is usually indirect and allows choice. For PDAers declarative language, for e.g. “people are sitting down for lunch now” rather than imperative language, for e.g. “you must eat now” tends to feel more soothing and less demanding.
Alternative Communication Methods: Utilize pictures, written instructions, or communication devices if verbal communication is challenging.
Collaborative and Multidisciplinary Approach
Involve a team of professionals who understand both eating disorders and autism and provide regular training in autism (3-monthly) and round group discussion time (weekly) for members of the treating team.
Interdisciplinary Team: Dietitians, therapists, and autism specialists are usually part of the treatment team. A team approach is important because it is incredibly stressful to receive treatment for an eating disorder, and for family members to watch their loved one refuse to eat and become sick as a result. Validation for the distress and individual experience, support, and encouragement for how to recover need to be available, and each aspect of therapy is important, from the medical overview and intervention as needed, to designing meal plans, to supervising meals and delivering therapy.
Family Involvement: It is important to engage family members in the treatment process for support and consistency at home. If autism has recently been diagnosed, family members will need to understand how autism and the eating disorder interact to maintain the eating disorder symptoms, and ways to adapt treatment to address the autistic features. Ultimately, recovery can occur in a place where the autistic person feels safe, understood, and validated.
Understand that the effects of starvation magnify autistic traits
The initial stages of treatment need to be very much about increasing calories to end starvation syndrome. This means accepting a diet that is high in calories even if it is low in nutrition or variety is extremely important to recovery. The goal is to eat. Even after optimal weight gain has occurred starvation syndrome can continue for weeks, months, and up to 2 years. During starvation syndrome the person will be very rigid in their thinking and behaviour, use a lot of black and white thinking, become very self-obsessed, usually have rituals, often around food and/or exercise, be subject to strong mood swings and/or meltdowns, avoid seeing and relating to people, even loved ones, and have great difficulty using social skills. All these features make it more difficult to recover from an eating disorder. Food truly is medicine during this low-weight phase.
Addressing Mental Health
Autistic individuals are far more likely to have mental health conditions in addition to their eating disorder, especially anxiety and depression. It is difficult because whilst the brain is in starvation mode, the person is less able to utilise therapy, which is why many ‘talking therapies” are usually part of the later stages of treatment once the person is weight-restored. Nevertheless, the person still needs support and counselling for their emotional pain. When to start psychotherapy is a decision made on an individual basis.
Mental Health Support: Provide support for anxiety, depression, or obsessive-compulsive behaviours.
Medical Monitoring: Regularly monitor physical health to address any complications arising from restrictive eating.
Personalized Therapy Approaches: When the person is cognitively and emotionally ready for psychotherapy, adjust the therapy for autism. This usually means addressing alexithymia as a start, that is, assist the person to develop interoceptive (body sensing) skills and their words for emotions. Incorporate passionate interests into recovery where possible. Discuss unmasking since many autistic people mask their autism to fit in. Being able to unmask safely and be one’s own self-advocate is linked to better mental health for autistic people. Some autistic people with eating disorders have benefitted from Dialectical Behaviour Therapy (DBT) to assist with managing extreme levels of distress and anxiety. Others have benefitted from the Program for the Education and Enrichment of Relational Skills (PEERS) to assist with social confusion and develop coping strategies for social situations.
Provide significant support for the adjustment back to life outside hospital.
Many autistic people struggle to generalise what they have learned in one setting to another setting. If planned meals and fixed mealtimes worked on the ward, replicate this at home. Harness the person’s individual motivation to change as the driver for following pathways to recovery at home. For e.g. for the person’s children, or to get their life back. Plan a slow transition supported by visuals. For e.g. eating first one meal then two at home per day in the lead up to discharge.
By implementing these strategies, treatment for restrictive eating disorders in autistic individuals can be more effective, compassionate, and attuned to their specific needs, leading to more successful outcomes.
Where to From Here?
We have created a half day on-demand course called Autism and Eating Disorders. We created this specifically for professionals who may be working with autistic and/or people suffering eating disorders. We cover the most recent research in this area, how to detect autism or an eating disorder, as well as modifications to make when your autistic client has an eating disorder. We are also excited to announce that included with the course is a video of Asher Jenner, an autistic woman with a PDA profile, who describes her own journey to recovery from an eating disorder, and what modifications helped along the way. Both parents and professionals will find this training helpful.
References
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
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
Tchanturia , K. (Ed.) (2021). Supporting Autistic People with Eating Disorders: A Guide to Adapting Treatment and Supporting Recovery. JKP, London UK.
