There are many stereotypes surrounding autism. When asked to envision an autistic person, many may think of a quirky man, socially uninterested and who enjoys math or trains. The reality is that autism affects individuals of all genders and that women have been historically underdiagnosed. Research on double empathy suggests that social interaction patterns in autistic people may be different than neurotypical rather than simply ‘less’ (Mitchell et al., 2021). Autistic people have a range of interests as wide as neurotypical people, and although these may be more intense and focused, the variety spans far beyond math and trains. Research also suggests that autistic women often have different specialized interests than men (Gould, 2017)
The stereotypes surrounding autism would give an impression that an autistic person might be unlikely to develop an eating disorder (which holds almost opposite stereotypes of young women who strive vehemently for a sense of social worth and image). Of course, those stereotypes hold little to no truth as well.
The reality is that research suggests that as many as one-third of people living with anorexia have higher-than-expected levels of autistic traits (Kerr-Gaffney et al., 2020). As well, there is a significant overrepresentation of autism in people living with eating disorders including anorexia (Boltri and Sapuppo, 2021) and Avoidant/Restrictive Food Intake Disorder (Bourne et al., 2022). Rather than opposing conditions, for many these may run parallel, particularly for autistic women.
Low self-esteem and rule-governed thinking
As a therapist specializing in the crossroads between neurodiversity and mental health, some of this makes sense. In the case of Avoidant/Restrictive Food Intake Disorder (ARFID), the sensory issues associated with autism are likely to place one at higher risk. In the case of other eating disorders, the picture is a bit more complex.
Autistic individuals often experience high levels of rejection, exclusion, and pressure to mask. These social difficulties may be at least in part responsible for the exceptionally low self-esteem often seen in autistic people (Cooper et al., 2017). Research on autistic self-esteem has found that an autistic identity is positively correlated with a higher sense of self-worth in autistic people. Yet, women who are often either left undiagnosed or diagnosed later may have less opportunity to build an autistic identity. It may not be a surprise that ultra-low self-esteem is a strong risk factor for eating disorders (Colmsee et al., 2021).
Our society has a deeply unfortunate focus on weight and image as equivalent to worth, particularly for women. When someone has felt excluded, sees themselves poorly, and has had difficulty changing these things in a world that values neurotypical strengths, there is comfort in deducing worth to a number, such as weight on a scale. Also, the tendency toward rule-governed thinking in autism may place autistic people at higher risk of clinging to these numbers as a desperate way to cope. Research has shown that a similar cognitive profile is common between eating disorders and autism (Oldershaw et al., 2011) which may include this tendency toward rule-governed thinking.
Sensory Issues and Interoceptive Differences
Sensitivities to tastes and textures are common in autism. As well, many autistics report different connections to certain interoceptive experiences such as hunger cues. Both of these may be contributing factors to the development of eating disorders in autistic people. As well as may present differential treatment needs between autistic and neurotypical individuals with eating disorders.
Alterations in awareness of hunger cues are common in eating disorders. Still, most research targeting this phenomenon has examined individuals once the eating disorder has developed. Noting to origin of this difference in neurotypical people with eating disorders is difficult as well as determining if it is something that exists or only after the onset of the eating disorder (for example through habituation ignoring one’s hunger cues for a long period). In contrast, many autistic people struggle with interoceptive alterations including awareness of hunger cues regardless of whether they develop an eating disorder.
This is especially relevant as strategies of intuitive eating, or building greater awareness of one’s body’s needs and meeting these, have been at times utilized as an intervention in eating disorders (Grinder et al., 2021). A person with atypical interoception or identification of hunger cues is likely to be faced with significant challenges if attempting to engage in intuitive eating. They may over or underestimate their level of hunger resulting in not meeting their body’s needs. Reintroducing awareness to hunger cues might be more difficult for autistic individuals if their experience of these has been different since birth rather than learned.
Treatment
Traditional eating disorder treatment involves, with good reason, an initial focus on refeeding and medical stabilization. Eating disorders have among the highest mortality rates of psychiatric conditions. In residential treatment, participants might be given a period of perhaps 30 minutes to eat a meal and if they are unable to do so will be asked to drink a nutrition shake in place. Sometimes individuals can choose meals from a menu, however, often there is some randomness adding an exposure element to the process. This might be particularly difficult for individuals with significant sensory problems (Babb et al, 2021).
Emerging approaches specific to eating disorders in autism have included the Pathway for Eds and Autism Clinical Excellent (PEACE), a collaboration between lived experiences and clinical understanding (Tchanturia et al., 2021). The PEACE pathway focuses on modifications to traditional eating disorder treatment to meet the needs of autistic people. This includes comprehensive adaptations ranging from sensory-friendly color schemes on an eating disorder unit to dietary accommodations, which take into account common sensory issues with food in the refeeding process as well as communication passports and a degree of specialized programming.
On a therapy front, a common treatment utilized in eating disorder treatment, radically open DBT (RO-DBT), conceptualizes both anorexia nervosa and autism as having similar aspects of overcontrol. This treatment focuses primarily on targeting emotional loneliness while building flexibility and social connection through an intensive mix of group, individual, and between-session interventions. Radically-Open DBT is effective in reducing eating disorder symptomology and improving the quality of life in individuals with anorexia (Lynch et al., 2013). Research has also found a reduction of emotional distress in autistic individuals who have participated in RO-DBT programming (Cornwall et al., 2021). Still, I was unable to find any research on RO-DBT in autistic people with eating disorders.
These approaches are promising. Still, much is left to be done in terms of understanding how to treat eating disorders in autistic people as well as introducing neurodiversity-affirming approaches to eating disorder treatment. The inclusion of autistic voices in this process is critical.
Prevention
While neurodiversity-affirming treatment strategies for eating disorders are vital, I believe that the first question should be: How can we prevent eating disorders in autistic people? Earlier identification of autism, neurodiversity-affirming school practices, and opportunities to meet other neurodivergent youth might be a start.
As a profession, we also must accept that autism often presents differently in women. Our culture emphasizes blending in within a social setting for young women, and many learn how to mask neurodivergent traits early (Dean et al., 2020). Within a society where belonging is central and where standing out is less tolerated for women, awareness, and celebration of neurodiversity may lift neurodivergent self-esteem and reduce isolation.
