Did you know that up to 37% of people with anorexia nervosa are autistic? ⁽¹⁾ Or, that an estimated 21% of autistic children are at high risk of developing avoidant/restrictive food intake disorder (ARFID)⁽²⁾?
Hints that autism and eating disorders might be linked have been showing up for a long time. Recently, researchers have taken the topic on; and what they have found is that autistic people are overrepresented in eating disorder treatment programs, and they also tend to have poorer outcomes, longer in-patient admissions, and more heightened presentations than neurotypical people in those same programs ⁽³,⁴,⁵⁾.
This tells us that autistic people are not only at a higher risk of developing eating disorders in the first place, but they are also at risk of more negative outcomes once they have developed an eating disorder. This also suggests that current approaches may not be sufficiently meeting the needs of autistic people with eating disorders.
So, why do autistic people have such a high risk of developing eating disorders in the first place? Here’s what we know.
Autistic people think, process, and perceive differently to neurotypical people. Many autistic people have an uncanny ability to master anything – completely and utterly – within as little as a few weeks. This is thanks to some of their brain style differences, like high-level pattern-recognition, fast-tracked thinking styles, strong attention to detail, ability to hyperfocus, and strong ability to encode and process logical, literal, and visual information ⁽¹³⁾. Not all, but many autistic brains tend to lean this way. At the same time, those same autistic people will often say that a single phone call or an interrupted task can write off their entire day. Like anyone, autistic people have their relative strengths and weaknesses - they just differ to those of neurotypical people. A single autistic brain trait, like hyperfocus, can be a strength in some situations, and a weakness in others – it all depends on the context and what the individual values.
In the case of eating disorders, research has indicated that the high rates occurring in autistic people essentially come down to brain differences such as cognitive rigidity, restricted interests and repetitive behaviours, higher attention to detail, lower social functioning and sensory sensitivity ⁽³⁾.
Many autistic people experience their senses either much more strongly, or much less strongly than neurotypical people do. This means that they can experience a disliked food as extremely distressing and even physically painful, leading to food refusal and potential malnourishment ⁽¹¹,¹²⁾. On the flipside, some autistic people respond less to taste, and this can become a risk factor for over-eating. In addition to sensory differences, research also suggests that many autistic people experience alexithymia (disturbed perception of one’s own emotions) ⁽⁶⁾.
These differences in sensory and emotional experience can lead to corresponding differences in one’s relationship with food, social functioning, and sense of self – all major factors in the development and maintenance of eating disorders ⁽¹⁴⁾.
The current situation:
Autism has clearly been linked with eating disorders, and yet there is suspicion that many autistic people with eating disorders are sliding under the radar. Research is increasingly indicating that autism is under-identified in females, who present differently to autistic males ⁽¹⁰⁾. It is estimated that 80% of autistic females go unidentified by age 18, and that the true ratio of autistic males to females is 3:4, and not 4:1 as is so commonly reported ⁽¹⁰⁾. So, while we know that 37% of people with Anorexia are autistic, we don’t know how many Autistic people are anorexic. Many autistic females with eating disorders are being diagnosed with eating disorders alone and are having their autistic identity missed – leading to less opportunity for eating disorders and autism in females to be investigated together, and therefore less optimal treatment approaches for these individuals ⁽⁵⁾.
Recent studies and interviews amongst autistic patients with eating disorders, their carers, and their clinicians have suggested the following ⁽⁵,⁷⁻⁹⁾:
Sensory sensitivities need to be addressed in autistic people with eating disorders.
Autistic individuals take longer to feel comfortable and ready to engage with their treatment team.
Autistic patients experience motivational interviewing as less helpful than neurotypical patients do.
Autistic patients could benefit more from approaches that build on concrete, specific, simple, and literal language use.
Treatment needs to be individualized and flexible for autistic patients.
Many autistic individuals with eating disorders are dealing with barriers to diagnosis and lack of direction.
Autistic people with eating disorders would benefit from specific clinician training and support around how to best meet their treatment support needs.
Adaptations to outpatient and inpatient treatment settings could reduce stress levels and increase treatment outcomes in autistic patients with eating disorders.
How we can help:
Our psychologists at Treat Yourself Well Sydney Psychology Practice are aware that eating disorders affect autistic people differently. We offer assessments for autism and eating disorders to both adolescents and adults. We use evidence-based treatment modalities, tailored to meet the unique needs of each individual client, flexibly. We listen to our autistic clients directly and consider their own input about their eating disorder treatment needs above everything else. We also follow emerging research into the eating disorders and autism link very closely, so that our treatments are constantly updated, taking the latest recommendations into account. Our goal is to use the science to walk alongside you. We aim to support you in your recovery journey – however you define it.
If you or someone you love is autistic, or suspected to be autistic, and having trouble with food, eating, exercise or body image, give us a call now at (02) 9555 4810, or send us an email at info@treatyourselfwell.com.au. We will run you through the assessment and treatment options available to you, and match you to the psychologist most suited to you.
References:
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10. McCrossin, R. (2022). Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis. Children, 9(2), 272.
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12. Inoue, T., Otani, R., Iguchi, T. et al. Prevalence of autism spectrum disorder and autistic traits in children with anorexia nervosa and avoidant/restrictive food intake disorder. BioPsychoSocial Med 15, 9 (2021). https://doi.org/10.1186/s13030-021-00212-3
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