Hungry for Change: On Inaccessible, Exclusionary, and Discriminatory Care for Autistic People with Eating Disorders
Trigger warnings: eating disorders, racism/racist health disparities, mental health disparities; ableism, misogyny, gaslighting of Black women and Latinas with eating disorders, homophobia, transphobia, fatphobia, and oppressive barriers to care
The link between autism and anorexia is an international conversation, though an incomplete one. In part, this is because Autistic people are over five times more likely than our neurotypical peers to be diagnosed with anorexia, bulimia and/or binge eating disorder (BED) (Nickel et al., 2019; Udo & Grilo, 2018: 4.7% vs. 0.8%). We often thrive on routines, schedules, and strict rules; may restrict food due to sensory oversensitivities; and have higher rates of anxiety, depression, and PTSD that put us at a greater risk for eating disorders (EDs), especially if we’re otherwise marginalized.
First, let’s look at how BIPOC experience eating disorders. Taylor and colleagues (2007) found that binge eating is more common among African-American and Caribbean women (5.82%) than among men with similar races and ethnicities (4.14%), though current research is needed to track any changes. Meanwhile, BED is also more common in Latinx communities (Perez, Ohrt, & Hoek, 2016) and recent studies found that 3.8% of Indigenous women in the US and 10% of Arab-Americans binge ate much more than white women (1.3%) and especially white men, whose rates were lowest (0.4%). However, 12% of Asian-American women (East, South, Southeast) had a disordered eating problem (the highest of all other racial/ethnic groups). Additionally, the same study found that biculturalism and higher total stress lead to disordered eating. Therefore, Autistic women of color may have an exponential, though unresearched, risk for eating disorders.
After interviewing Autistic, anorexic women and their parents/providers, Brede and colleagues (2020) found that they’re more likely to develop anorexia if our needs go unmet, as they experience increased likelihoods of sensory sensitivities with food restriction, sensory overload and meltdowns, bullying trouble with alexithymia and emotional dysregulation, and more. However, this study didn’t account specifically for Autistic people of color, cis or trans.
I spoke with Kiano (name changed for anonymity), a Black Autistic, anorexic trans man, about his intersected experiences. He explained: “Being skinny first and strong second were primarily valued in me by others from childhood on. Predominantly white primary care providers and nutritionists then implied I ate incorrectly while dismissing my anorexia and ignoring my Blackness, my gender, my Autistic identity, etc. which made their care ineffective.”
Kiano shared that his anorexia diagnosis he’s had since age 16 was only kept in his chart by Black medical providers. However, he noted that other Black people often gender him “as a girl” because he’s “super passive” while white people haven’t considered his passiveness “important” when gendering him.
A survey conducted by Garber, Bowman, and Choo’s (2018) of mostly white and transmasculine people found that they often avoided seeking emergency room care to prevent transphobia. Meanwhile, disproportionate poverty among trans people of color makes relatively unsafe care systems unaffordable for them (Seelman, Tense & Alvarez-Hernandez, 2017). And notably, the sources I did find on eating disorders in Black communities didn’t include Black trans men.
I wonder, then: is Kiano’s eating disorder only acknowledged if his trans identity is cast aside?
Data cited by the National Eating Disorders Association (NEDA) indicates that white women with EDs are more likely to be believed by providers (44%) than Latinas (41%) and especially Black women (17%). Additionally, Al Jazeera discussed how barriers to mental healthcare for people of color, including a lack of cultural competence and fewer providers of color, can discourage people of color from seeking care. It’s therefore not surprising that about 1 in 4 African-Americans have avoided healthcare due to racism (and that was before the pandemic), which can lead to poor health outcomes.
We must take multiple marginalized identities into account when it comes to providing support for Autistic people with eating disorders. Shira Collings, a disabled, queer, Jewish student therapist who is in recovery from disordered eating experienced ostracization and discrimination because of her intersecting identities. These experiences put pressure on her to stay thin to prevent further discrimination caused by fatphobia. Shira explained that she’d relied on convenient/fast foods due to executive functioning issues, and that she was shamed for this. Ultimately, this led to the disordered eating that, as Shira reflected, “had a detrimental impact on [her] life.”
Based on her experiences, Shira encourages providers to “examine their own biases and beliefs about weight and body size, including any assumptions that thinness is inherently better/healthier than fatness,” adding that “the pressure to be thin can greatly exacerbate disordered eating and other mental health issues in an already marginalized group.” Further, she reminds that it’s important for “providers to work to make their care inclusive to all neurotypes.” This includes taking into account clients’ sensory needs around food. Kiano echoes this advice. He shared: “I have Avoidant/Restrictive Food Intake Disorder (ARFID) and extensive allergies to multiple foods in most food groups, so how safely I can eat to survive is drastically altered, daily.” As such, when treating Autistic people with EDs, he urges medical providers to “pay more attention to why their clients may avoid food.”
Autistic people are ultimately more prone to eating disorders that may manifest differently along intersections of race, gender, weight, etc. And unfortunately, pervasive barriers to care due systematic oppression can delay the healing process. Currently, there is a lack of treatment criteria for Autistic people with EDs, especially (transgender) BIPOC who face the most risk for health disparities. But initiatives like PEACE Pathway (Pathway for Eating disorders and Autism developed from Clinical Experience) in the UK are addressing Autistic EDs across intersections of race and LGBTQ+ identity while also accounting for the experiences of men with EDs. Even so, it’s vital that care systems around the world effectively serve all Autistic people with EDs. To do this, we must help fill the knowledge gaps. Let’s support Autistic communities to lead their own studies (known as participatory action research) with the tools, education, and resources/guidance provided by accommodating researchers to further close the knowledge gap. That way, we can empower Autistic communities that are hungry for change.
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