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Introduction
Autism is a neurodevelopmental difference that impacts how Autistic people experience the world around them. This is often referred to in the scientific literature as “autism spectrum disorder”. However, this blog will utilise identity-first language and capitalisation consistent with the preferred language of the neurodiversity movement.
Autistic people are dramatically more likely to experience eating disorders (EDs) than non-Autistic people, with one study finding we are 15 times more like to experience Anorexia Nervosa (AN). There are also many undiagnosed Autistics with EDs; up to 37% of people with AN meet the diagnostic criteria for Autism. Whilst most ED research focuses on AN, limited data suggest that Avoidant Restrictive Food Intake Disorder (ARFID) is also very common among Autistics.
Transgender (trans) describes a person whose sex presumed at birth is not consistent with their gender identity. This includes people who identify as a man or woman, as well as people whose experience of gender sits the binary. Like Autistic people, trans people are at increased risk of EDs. In one study, 22.7% of trans young people had been diagnosed with an ED and two-thirds had limited their eating because of their gender.
Trans people are also up to 6 times more likely to be Autistic than cisgender (non-trans) people, making the risk of EDs even higher. Early data from our IncludED study suggests that Autistic trans people are up to 8 times more likely to be diagnosed with an ED than neurotypical trans people. However, this finding is subject to change, as the research is ongoing, and peer-reviewed publications are still pending.
I am an Autistic trans person with ARFID. I’m also a researcher and youth worker whose focus area is trans health, neurodivergence, exercise, EDs, and their intersection. My career has involved direct support of many Autistic trans young people with EDs. It has become abundantly clear to me that the challenges Autistic trans people face create the perfect storm of conditions for an ED to develop. In this blog, I hope to provide insight into these challenges and their link to EDs.
Gender Dysphoria
Many trans people experience distress or disconnect about their presumed sex and identified gender as being incongruent. This is generally referred to as ‘gender dysphoria’. Trans people may engage in disordered eating to manage their gender dysphoria. In one study, trans people restricted their food intake to suppress features associated with their presumed sex such as hips and breasts for trans mascs or wide shoulders and tall stature for trans femmes. Another study reported trans adolescents restricting their food intake to suppress their puberty.
Fortunately, gender dysphoria can be alleviated more safely through gender-affirming medical care such as hormones and surgery. However, we face many barriers to accessing this care. A lack of trained professionals in this field can lead to extensive wait times and the costs of medical care can be exorbitant. For example, a single gender-affirming surgery can cost up to $150,000 USD.
Autistic trans folks face even further barriers to affirming their gender, often due to ableist attitudes that our Autism makes us incapable of knowing who we are. For example, one policy enacted in Missouri in the United States required that a trans person’s Autism be ‘resolved’ before they could receive gender-affirming medical care. Autism cannot be cured or ‘resolved’, making this a total ban. Without access to this care, it is no wonder Autistic trans people are resorting to disordered eating to manage their dysphoria.
Sensory Differences
Autistic people perceive and process information from our senses differently. Many of us experience sensory hypersensitivity. Sounds can seem excessively loud. Bright lights and colours are uncomfortable or painful. We often feel heat and cold more intensely. Certain textures, smells, and tastes are absolutely repulsive. Other Autistic people are sensory seeking. They crave bright colours, interesting textures, loud sounds, and strong flavours.
As you can imagine, our sensory sensitivities can have a profound impact on our eating habits. Many of us have very restricted diets that avoid certain smells, tastes, and textures. Some people’s sensory aversions are so strong that certain foods cause them to gag or vomit. As a result, we may eat the same few foods that are tolerable. This is referred to in the community as our ‘samefoods’. Many of us have samefoods that are highly processed so that they are guaranteed to be the same every time. We may avoid foods like fruits and vegetables that differ in smell, taste, and texture depending on their ripeness (why does every single blueberry taste different???). In some cases, this limited diet can lead to malnutrition and even scurvy (the thing that pirates often got due to a lack of vitamin C).
Autistic people also experience sensory differences with our interoception. This term refers to our ability to sense internal signals from our body including our pain, hunger, thirst, and fullness cues. Autistic people are often less connected to these cues and thus are more likely to not eat when hungry and/or binge eat beyond fullness. This atypical interoception can cause EDs. Fortunately, evidence suggests that Autistic people can improve their interoception through practices such as mindfulness.
Despite the potential ED prevention of such practices, Autistic trans people don’t want to improve their interoception out of fear it will worsen our gender dysphoria. This concern is well-founded, with a recent study reporting greater suicide attempts in trans people with stronger interoceptive awareness. Thus, the reduced interoception in Autism may be serving a protective function for Autistic trans people. This suggests that ED treatment that focuses on building interoceptive awareness may not be beneficial for our community without the integration of gender-affirming care.
Executive Dysfunction
Executive dysfunction is a common aspect of Autism in which a person’s ability to manage their emotions, thoughts, and actions is disrupted. This often manifests in difficulty with focus, memory, motivation, starting and completing complex tasks, and impulse control. For some Autistic people, executive dysfunction can manifest in difficulty with meal planning, shopping for ingredients, and food preparation. Cooking meals requires great levels of executive functioning like time management, switching between multiple tasks, and close reading of instructions. As a result, many Autistic people find cooking to be an overwhelming or insurmountable challenge. We may restrict our eating to avoid cooking and other meal preparation or select less nutrient-dense options.
Executive dysfunction is also seen in people experiencing mental illnesses such as anxiety and depression. Given the high rates of discrimination-related mental health issues reported in trans people, issues with executive dysfunction would be expected in both Autistic and non-Autistic trans people. Consistent with this, a recent study of trans young people found that 21% of non-Autistic participants and 69% of Autistic participants had clinically significant executive dysfunction. Unfortunately, EDs also worsen executive function. This creates a vicious cycle for Autistic trans people where our executive dysfunction causes eating issues, and these eating issues cause further executive dysfunction.
Social Isolation and Discrimination
Both Autistic and trans people experience discrimination and social exclusion. Autistic people often experience loneliness and social isolation due to a world that is inaccessible to us. For example, our sensory differences can make social events in loud venues such as bars or parties distressing. Our differences in communication style, such as fewer hand gestures, eye contact, and facial expressions make us less likeable to neurotypical people. We are also dramatically more likely to be unemployed, with the unemployment rate of Autistic people six times higher than for non-Autistic, non-disabled people in Australia.
Trans people experience many similar difficulties. We frequently feel misunderstood or unsafe in the world. Nearly 90% of Australian trans youth have experienced peer rejection and nearly two-thirds have unsupportive families. In a survey conducted in the United States, 90% of trans people had experienced harassment or discrimination. This survey also recorded an unemployment rate double that of cisgender people.
These experiences are compounded when a person holds both marginalised identities. Trans-inclusive spaces are often located in bars or other spaces that are not sensory-friendly for Autistic people. Autistic communication differences can leave us feeling misunderstood even by non-Autistic queer and trans people.
Discrimination can be a key risk factor for EDs, but there is no research about this focused on Autistic trans people, so I will share an insight into these experiences from my work. The Autistic trans people I have worked with are generally estranged from their families. They are experiencing homelessness, are unemployed, and are living in extreme poverty. This makes affording a formal Autism diagnosis almost impossible and prevents them from unlocking the support this diagnosis could bring. It also means they can’t afford the gender-affirming medical care they need to feel at home in their bodies. It is no surprise that under these conditions, EDs can emerge.
ED Treatment Experiences
There is very little research on Autistic ED treatment experiences, but one study found that traditional treatment is not adequately meeting our needs. The Autistic people I’ve worked with have described having their sensory needs ignored in ED treatment settings. Some have even told me that treatment made their ED worse. They often felt misunderstood or discriminated against by staff because of their communication differences. In one study, an Autistic person was perceived as ‘rude’ by clinicians because of their Autistic communication style. It seems that if Autistic people want to be treated kindly in ED healthcare settings, they are expected to hide their Autistic traits (called ‘masking’ in the community). What we really need is to have our differences accommodated by clinicians, including adapting meals and spaces to meet our sensory needs and accepting our communication differences.
Trans people are also not having our needs met in ED treatment. In one study of trans people with EDs, not one participant reported having a positive treatment experience. Some wished they had never accessed treatment at all. Around 40% hid their trans identity to avoid discrimination from clinicians and 11% of those who did disclose their trans identity were misgendered (called the wrong pronouns) by their clinicians. Many also described being asked invasive questions about their gender that were not relevant to their treatment.
For Autistic trans people, these experiences are compounded. When we show our whole selves, we often experience discrimination or invalidation by clinicians. For some, this means they disengage from treatment and give up on recovery. Others mask our Autistic traits and hide our trans identities to keep ourselves safe. One person I’ve worked with said they had to ‘check their Autism and transness at the door’ to access ED treatment. This made it nearly impossible for them to recover, as sensory sensitivities and gender dysphoria were the driving force behind their ED.
Conclusion
There is a vibrant, diverse, and resilient community of Autistic trans people. I love these parts of myself. My Autism gives me a strong sense of justice and an intense passion for topics of interest. My transness has brought me the freedom to live outside categorisation. It is not our identities, but the neurotypical world around us that often hinders people like me from being our most authentic selves. With our access to gender-affirming care restricted, we are forced to endure our dysphoria. Our differences lead to discrimination rather than celebration. The cumulative effect of these myriad challenges can be the catalyst for an ED.
Greater research, awareness, and advocacy are necessary in this space and ED clinicians should consider specialised professional development. Barriers to gender-affirming care, including specific restrictions for Autistic people, must be reduced. ED treatment facilities must seek to be trans-inclusive and sensory-friendly. Treatment approaches need to adapt to integrate gender-affirming care and accommodate Autistic traits. I hope this blog can serve as a spark that ignites such changes.