Ableism and gatekeeping in eating disorder treatment for neurodivergent clients (part 1)
Author: Stacie Fanelli, Pre-Licensed Professional, MSW, ACSW
“Eating disorders are sneaky.” This is my orientation to the field from the other side of the couch, years into my own solid recovery but still unaware of my neurodivergence. My new coworker presents me with a cafeteria tray covered in used dishes and crumpled napkins meant to teach me all the “tricks” to look for when checking to confirm that a patient has completed their meal. I spot half a container of peanut butter hidden under a plate, but I miss the smeared butter along the rim of the tray. “Be careful,” she warns. “They’ll try anything to hold onto control.”
“Tough love” sums up the general attitude I’ve found eating disorder treatment center staff take with their milieus. Mental health techs, nurses, dietitians, and therapists band together to police the parasitic eating disorder that would otherwise operate unchecked to destroy its host from the inside out. People of all genders, sizes, colors, spiritualities, diagnoses, and neurotypes attend these programs for stabilization, symptom interruption, or a “tune-up” of the mindsets and routines that keep them stuck in their pain. That’s all well and good, but nobody signs a waiver of their self-determination at admit.
I ask my coworker, “How do we know what’s disordered?” and she refers me to the program’s handbook of unacceptable behaviors, like using a lot of hot sauce, wearing baggy clothes, and spending too much time alone. The list is lengthy and is composed of anything that may indicate an attempt to sabotage a patient’s relationship with food, avoid their body and therefore their emotions, lose weight, or communicate via actions instead of words. The latter is considered to be a problem because an eating disorder can be a way to communicate non-verbally, “I’m not okay.” Therefore, I’m told, patients must learn to ask for what they need in a “healthy” way.
An autistic client signs the word “bathroom” in ASL at the office door to request that a staff member unlock her bathroom, but the program director says to the team, “No, she needs to come back here and use her voice.” She adds, “She’ll have to learn it’s okay to take up space.” If you have a clinical background, perhaps this sounds to you like compassionate, well-intentioned modeling of boundaries and conceptualization of an underlying issue. It’s actually behaviorism, and while it’s the treatment approach of choice in most, if not all, traditional eating disorder treatment centers. It’s also the root of a very big problem for the approximately 20% of people with eating disorders who are autistic (according to a 2017 literature review). It uses ableist generalizations and ignores a wide array of unique sensory, cognitive, and social needs that neurodivergent people have, have always had, and will continue to have, regardless of the status of their eating disorder recovery. It ignores their dignity.
In a nutshell, behaviorism rewards and punishes to motivate change, but therapists like to call it something more dignified and less dog-training-esque like “earning privileges” and “behavior contracting.” Some treatment centers use level systems or contracts to override the ambivalence inherent in eating disorders, to give clients extrinsic motivation to choose, say, the “urge surfing” skill over purging. In some cases, that motivation looks like instant gratification, which we ADHDers flock to a lot more enthusiastically than we do to the abstract promise of a better future. So if it seems like it’s working to give someone coffee at breakfast or permission to prep their own snacks as a gold star for three days in a row without restricting, it’s because it is…until it isn’t.
Behaviorism at its best is a band-aid for neurotypical eating disorder clients and at its worst is actively harmful to neurodivergent clients. First of all, an incentive, whether it’s coffee or someone saying they’re proud of you, by definition asks someone to act in a way they would not if it were not there. If you dangle a carrot in front of me, I walk toward the carrot. If you take it away, I lose interest and I keep doing what I was doing. Thus, if what I was doing was harmful to my health, your carrot dangling has enabled me to pause and delay the harm to get to the carrot, hopefully long enough that I can look at alternative behaviors and increase my intrinsic motivation through therapy.
But when what I was doing was being my authentic self without any harm to myself or another person, walking toward the carrot is self-abandonment. When behaviorism is used to change (manipulate) neurodivergent norms and preferences, such as sitting on the floor or eating a sandwich with a knife and fork, wrongly assumed to be contributing to the eating disorder, it is encouraging masking. Those of us who have experienced rejection from neurotypical peers our whole lives have learned to mask as a means of self-protection; we’re already really good at it, and in fact, eating disorders themselves make great masks. Recovery requires self-acceptance, so if you want to use modeling in your treatment approach, model accepting your client as they are.
A neurotypical understanding of recovery insists on a universal standard that is never quite defined and passes itself off as client-centered by claiming that you, the individual, get to choose what you want your recovery to look like. At the same time, treatment centers create forms for staff to document “bizarre” or “ritualistic” table behaviors observed, which then inform others’ perception of your progress.
I never got my question about how to know what’s the eating disorder and what’s not answered, so I started asking clients what their intentions were. Who better to consult about whether arranging candy by color is a control mechanism or a harmless preferred way to eat than the person doing it? Neurotypical and neurodivergent providers alike must trust their clients’ expertise on themselves. Sure, we are taught that eating disorders cannot be trusted, but our clients are more than eating disorders. We can’t expect them to believe that if we don’t.
The only statistics we have about the overlap between neurodivergence and eating disorders come, of course, from those privileged enough to be afforded a diagnosis and to attend eating disorder treatment, where this data is collected. It’s estimated that up to 20 percent of the general population may be neurodivergent, but only a fraction of them have seen a provider who didn’t mistake their neurotype for symptoms of trauma or dismiss it as a phase. So when someone decides to make the leap into recovery and seek mental health treatment, forming vulnerable relationships with mental health professionals, they may unknowingly leap into an opportunity to have their neurodivergence identified, validated, diagnosed, explored, and supported for the first time ever as well.
Many of my clients who don’t know or understand they’re neurodivergent hold deeply embedded core beliefs that they are stupid, lazy, broken, or undeserving, which perpetuate the eating disorder as a functional “fix.” That is, the eating disorder believes it’s compensating for a personal failing because it doesn't know that A) their differences make plenty of sense when explained by a neurodivergent diagnosis and B) these differences don’t make them “bad” in the first place. While working at a residential treatment center, I ask the staff psychiatrist to assess my clients for ADHD, autism, sensory processing disorders, and learning disabilities, and I am told, “She can’t have ADHD…she graduated from a prestigious university” and “That’s just social anxiety” and “This is just another excuse they’re making” without any follow-up. Opportunity denied, core beliefs reinforced.
Gatekeeping of diagnosis is unfortunately prominent everywhere. Psychological evaluations cost thousands of dollars with limited insurance coverage; assessors are not trained to recognize nuanced neurodivergence, especially in any population besides young boys; and most relevantly, an eating disorder seems to preclude diagnosis, and therefore treatment and accommodations. “We don’t know their baseline; once they’re fed, we can assess” is something I hear a lot, and it makes sense to want to rule everything out, except that this isn’t actually possible without those expensive tests.
ADHD symptoms can look like mania, anxiety, insomnia, and most confusingly, malnutrition. Autism is confused with social anxiety, obsessive compulsive disorder, personality disorders, schizophrenia, and more. And the myth that neurodivergence is actually “just trauma” is very much alive. Diagnosis isn’t the fragile piece of glass that well-meaning providers treat it as, so those who go out of their way to avoid labeling someone as “officially” neurodivergent for fear of being wrong and causing harm are acting from the ableist, medical-model notion that disability is shameful and scarring.
In the wonderful but infrequent cases when a client enters eating disorder treatment with previous knowledge of their neurodivergence and is given the benefit of the doubt, supporting them can be a complex task (that doesn’t mean you don’t have to do it).
About Stacie:
Stacie is an associate clinical social worker. She has worked at all levels of care across multiple eating disorder treatment centers and now sees clients in California through a group practice on outpatient basis with a specialty in eating disorders and ADHD. She is both recovered and neurodivergent and weaves her lived experience into therapy.
Here is how you can learn more about Stacie’s work: https://www.psychologytoday.com/us/therapists/stacie-fanelli-mission-viejo-ca/822638
