Written by Sam Sharpe, PhD, FEDUP Collective for the Autistic Self Advocacy Network

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While many autistic people struggle with food and eating, these challenges are often misunderstood, overlooked, or mischaracterized within the world of eating disorder research and treatment. As a peer support worker at FEDUP Collective (an organization that supports transgender, gender diverse, and intersex people with eating disorders) and a living experience researcher, I’ve encountered many ways in which autistic people’s struggles with food, eating, and body image are misinterpreted and appropriate care is lacking. In this blog post, I will discuss three of these issues.

Many autistic people have relationships to executive functioning which differ from normative expectations and/or may be personally challenging. Feeding oneself or communicating needs around food both require multiple executive functioning skills which can be overwhelming and complex. Shopping for food, cooking, and washing dishes are commonly understood as food related tasks that require time and effort. 

However, for some autistic people, a variety of additional tasks including remembering to eat, figuring out when in the day to eat, decision making about what to eat, eating without getting too distracted or disgusted to finish, and managing the sensory experiences that occur during and after eating can require additional executive functioning skills and feel exhausting. For individuals with physical disabilities or chronic illnesses which impact eating and food options, this can compound these challenges, especially when reactions to eating certain foods may be unpredictable and disruptive. These types of challenges do not necessarily fit into commonly used definitions of eating disorders or disordered eating, but can significantly impact physical and mental health, as well as overall quality of life. 

Neuronormative assumptions that all people know how to do these tasks and can do them easily may make it difficult for some autistic people to name what they are struggling with or figure out what types of skills or external support would be necessary to address them. This can also create feelings of shame and stuckness. Some people benefit from using strategies such as lists or spreadsheets with food and meal options to remind them what foods are available, using alarm reminders about when to eat or pairing eating with other tasks that they already do throughout the day, asking friends or family members to help make food decisions if they feel stuck, and buying foods that require less cooking and cleanup if those tasks make eating more difficult.

ARFID stands for Avoidant Restrictive Food Intake Disorder, and existing research suggests it is more common in autistic people than in the general population. The three most common subtypes of ARFID are lack of interest in food, sensory sensitivity to many foods, and fear of negative consequences from eating. 

People with the lack of interest subtype may have low or no hunger cues, find food generally uninteresting or unappetizing, and have little motivation or reward from eating. In the sensory sensitivity subtype, individuals dislike the taste, texture, or other sensory qualities of many or most foods. Some people with this subtype have a very small list of tolerated foods and others may have a longer list of tolerated foods but can only tolerate a few of them on any given day. 

For the fear of consequences subtype of ARFID, some or all foods are avoided due to concerns that eating them will cause an immediate negative outcome such as pain, choking, vomiting, or an allergic reaction. In many cases, people develop this subtype of ARFID following a traumatic experience directly or indirectly related to food, such as a choking event, health scare, or illness. Many people with ARFID have more than one subtype. The diagnosis of ARFID is meant to capture individuals whose physical and mental health and quality of life are negatively impacted by one or more of these subtype presentations. 

In some cases, ARFID can result in significant nutrient deficiencies, health problems, and psychological distress, and having a clear diagnosis can help identify and get support for these issues. However, there is also ambiguity and sometimes harm in how ARFID is diagnosed and treated. Particularly in autistic populations, diagnosing ARFID can be complicated by the lack of clarity about what is a “normal” or “appropriate” amount of interest in food, tolerated food variety, or participation in social eating. Some people may have an inherently lower interest or enjoyment in food or a smaller range of preferred foods than what is culturally normalized but not experience any issues if they have appropriate support, accommodations, and if their way of eating is not unnecessarily pathologized by friends, family, and medical providers. 

Some people who do experience problems as a result of one or more of the ARIFD subtypes may have the potential to benefit from treatment but receive treatment that focuses on trying to get them to eat in a socially normative way rather than helping them meet their nutritional needs in a way that fits with their sensory profile. In some cases, people with ARFID are misdiagnosed with other eating disorders, such as anorexia nervosa or bulimia nervosa, and some people with other eating disorders also have ARFID, but their ARFID is not recognized and they do not receive appropriate support. 

Despite these challenges, many people with ARFID are able to find support and strategies for living with ARFID through research and experimentation, peer support, and providers who specialize in providing neuroaffirming and individualized ARFID care. Many healthcare providers are not familiar with ARFID, and if you think it matches your symptoms/relationship with food, you can tell your provider that you believe you have ARFID and ask if they can help you find specialized resources.

Many people think of body image as how someone feels about the shape, size, and overall appearance of their body. However, body image is actually quite multi-faceted and involves other senses besides sight and other concerns besides aesthetics. Information from other senses, including tactile, interoceptive, and proprioceptive inputs, can inform the overall, multi-sensory “image” a person has of their body. These sensory aspects of body image can contribute to positive, neutral, or distressing body experiences. 

While everyone has sensory experiences of their body, for autistic individuals, the way that certain sensory inputs are processed can make sensory components of body image more pronounced and potentially more distressing. Some autistic people try to minimize these forms of body “image” distress through disordered eating or eating disorders. For example, someone who has proprioceptive hyposensitivity may feel “lost” about where their body is in space in terms of its shape, size, and movement, and they might respond with rigid eating and exercise behaviors in an attempt to compensate for what feels like an uncontrolled and uncertain sense of the body. As another example, for someone who is hypersensitive to tactile input, weight fluctuations that impact physical sensations such as how much their legs touch while sitting or how their arm feels against their side when they walk may be highly pronounced and distressing. This could lead to disordered eating behaviors driven by the goal of achieving a specific weight that minimizes negative sensory inputs or to prevent their weight from changing. 

In most eating disorder treatment programs, body image interventions focus on addressing aesthetic aspects of body image and body image distress. These types of interventions are typically not adequate to understand and provide support for body image distress related to sensory input, which can mean that individuals impacted by these types of body distress may feel misunderstood and unsupported. 

Approaches that help individuals to understand their own sensory profile, explore how sensory distress impacts their body image, and develop adaptive ways to control or mitigate negative sensory inputs can be more supportive and effective. In many cases, an occupational therapy-based approach can provide more effective support for these types of needs than traditional eating disorder support services alone.

Sam Sharpe is a transgender and intersex peer support worker and researcher with FEDUP Collective and a professor of Biology and Gender Studies. Sam is passionate about addressing issues of oppression and illegibility in eating disorders, empowering alternate pathways to care and healing, and advocating for disability justice and lived experience informed care approaches.