Understanding and accommodating (some) neurodivergent needs in eating disorder treatment (Part 2)
Author: Stacie Fanelli, Pre-Licensed Professional, MSW, ACSW
Many specific needs of neurodivergent folks struggling with eating disorders set them apart from their neurotypical peers. These needs are so individualized that making a comprehensive list is simply impossible, but consider these categories: sensory processing, executive functioning (including emotion regulation), and social engagement.
While I’d like to provide some guidelines for accommodations and leave the individualized tweaking to the clients, I’m concerned about the way I’ve seen self-advocacy encouraged and simultaneously dismissed in treatment centers. Rejection sensitivity is heightened in neurodivergent people due to the lifelong experience of being told we are not enough or too much for others, not to mention the general difficulty we tend to have with either regulating or experiencing emotions at all. With that in mind, know that shame and/or feeling unsafe due to past experiences can make requesting accommodations at admission very challenging. That’s why admissions staff should walk all clients through a day of treatment and ask at that time whether they can identify areas where they may have difficulty participating or focusing, navigating the transitions in the schedule, or tolerating their environment. If the answer is yes, they should collaborate with the client and staff to make an adjustment that allows them to benefit from the program in the way that they need. That might not look the same as the way a neurotypical peer benefits from the program, and that’s okay. If the answer is no, however, staff should check in with the client when they arrive and throughout their stay about whether they have come up against any roadblocks that need accommodations. Regardless, all staff the clients interacts with should be trained in neurodivergent-affirming care and made aware of how the client’s needs may differ from others.
In particular, this might show up at the table. Redirection for what’s considered ritualistic eating is a standard part of most meal support, though it ranges from discreet to shaming. But redirection of an adaptive way of eating can cause harm. It’s true that a lot of adaptations you may see - holding one’s nose while eating a specific food, requiring a straw to drink a supplement because the feeling of anything touching the lips is intolerable, and many more - might be a piece of the eating disorder, but it might not. That’s for the dietitian to explore with the client (and by explore, I mean asking the client to reflect on the origins of the behavior and giving them the benefit of the doubt). Communication and collaboration among treatment staff is essential in creating an affirming environment. Remember that you are working with a neurotype, not a disease, so the only things that need to be changed are those that are causing harm (not those that don’t fix neatly into the recovery box).
It’s easy to fall into the trap of trying to “fix” neurodivergent traits that overlap with eating disorders, depression, and anxiety when you’re not familiar enough with those traits. For example, I observed an autistic client being scolded for her “behavior” after a meltdown. She was still required to attend group because staff believed she was purposefully avoiding “the work.” Someone who worries they are being judged for their food choices or painful experience they are sharing in a group will likely avoid eye contact. It might be tempting for a therapist to ask that person to look up in order to connect with their emotions, but this is neither necessary nor affirming. Body image exposures such as wearing jeans or makeup may be a sensory nightmare and not about body image at all.
Treatment center rules that prohibit blankets and pillows in groups so clients can’t cover up their bodies won’t work for someone who needs physical pressure to focus, nor will redirection of micro-movement that meets proprioceptive input needs. A nurse might feel it’s appropriate to ignore the panic response in a client having their labs drawn in order to model the affect that would help them get the job done, but someone with sensory processing issues is going to feel the pain of that needle prick with an intensity a neurotypical person cannot understand. In this case, the nurse should name that. Support them; be with them; coach them; maybe use a smaller needle.
Low motivation for activities of daily living like showering and cooking are sometimes assumed to be related to depression. Know that ADHD brains see tasks you might consider “simple” like washing dishes as complex and detailed and that task initiation is a common lagging executive function skill. A client of mine once started a small kitchen fire while chopping vegetables on a paper towel so that they didn’t have to wash a cutting board. They got too close to an open flame, overwhelmed by all the multitasking they were being asked to do. Rather than supporting her in navigating the kitchen differently, the dietitian used this as criteria to keep her in treatment longer and hoped that the harder she tried, the easier kitchen skills would come. They didn’t because, again, this is a neurotype, not a disease.
A client of mine in residential treatment with delayed sleep phase syndrome, a circadian sleep disorder sometimes linked with ADHD, struggled to wake up for early morning vitals and to prepare her breakfast. Rather than asking her, “What are you going to do when you have a job to get to?” staff could have problem-solved by building naps into her schedule or creating a protocol for breakfast in her bedroom. Treatment is meant to be a safe space, an affirming sanctuary in a world that isn’t affirming. By reminding the client that her neurodivergence will cause problems in the “real world” due to nonacceptance, staff ran the risk of re-traumatizing her, of being that problem. Neurodivergent clients already know what it’s like to exist in a world not built for them, and that’s part of why they need help now.
The same client had difficulty remembering to attend groups, and when I asked that facilitators prompt her when they’re about to begin, I was told that being on time is a “basic life skill” and that the client would benefit long-term from experiencing this “natural consequence.” I later learned that when she stepped down to virtual PHP, she asked her dietitian to email her a few bullet points about what they had discussed so she could remember to implement it, but the dietitian said they didn’t want to “enable” her. Sometimes the accommodations are so small and so easy that you have to take a step back and be honest with yourself about why you’re not making them. Acknowledging and challenging one’s skepticism and ableism is the most helpful thing an ally can do.
A major point of ambivalence I grapple with as a therapist with ADHD who once had an eating disorder is whether or not stimulant medication should be used in eating disorder treatment, as it is commonly abused as an appetite suppressant, even while it dramatically improves attention and productivity (and subsequently mood and esteem). It’s a tough call to make for med providers, and one middle-ground decision I hear a lot is to wait until the client’s eating has been stable for a certain period of time before trying stimulants. It sounds like a feasible plan, but now we’ve got a chicken-or-the-egg situation on our hands. What if their eating isn’t stabilizing because their ADHD symptoms are at the root of their eating disorder? What if providing the stimulants and then working with the dietitian to ensure consistent, structured eating regardless of hunger cues is actually the best call? Like all things, it varies from client to client, and on this one, it’s not just something you can ask and trust, so trial and error is the only way. Another decision psychiatrists go for often is using a non-stimulant medication to treat ADHD symptoms. Whether it works has been pretty hit-or-miss with my clients, but it can be helpful for clients to know it’s out there and ask for it.
I understand the concern that allowing needs to be met that not everyone in your milieu has will run the risk of triggering others. After all, eating disorders and comparison go hand-in-hand. But that’s okay. It is necessary to prioritize the needs of a minority group over the comfort of the majority. Just as denying a reasonable request because there is a chance it might “feed into the eating disorder” is ableist, so is denying one because “If we do that for you, we’d have to do that for everyone.” That’s not true. Let people be who they are while they recover (and always).
The food
Expect sensory trauma to play a role in clients’ eating disorders, and actively work to create a safe experience for them in treatment. That might look like removing the expectation that clients sit with their feet on the floor and hands on the table and paying attention to and adjusting possible environmental stressors like ambient noise from the nearby refrigerator or harsh lighting in the dining room. I have seen autistic clients thrive with their meal plans after being permitted noise canceling headphones and sunglasses at the table. It’s nice when it’s as easy as asking, “What would be helpful?” and it’s important to be able to get creative when the client isn’t able to answer that. It might look like replacing a food whose texture is intolerable with a nutritionally equivalent food at a client’s request. On that note, it’s also important that dietitians be trained to address each subtype of Avoidant Restrictive Food Intake Disorder (ARFID) - sensory sensitivity, fear of aversive consequences, and lack of interest. ARFID does not fall under the umbrella of anorexia, and a one-size-fits-all model doesn’t serve these clients, who very often are neurodivergent. The perception that clients are “scared” of every food they dislike leads to mistrust and disconnect. Exposure-based approaches are not always appropriate, but when they are implemented, it should be in an individualized, gradual manner. Would you throw a child head-first into a swimming pool and hope they swim?
Rumination - regurgitating and then swallowing food - is an overlooked eating disorder all its own in the DSM-V and common in autism. This behavior may have medical consequences just like any other, but it’s important to recognize the function it serves and whether it’s voluntary before treating it. Ruminating after a meal can be a self-stimulating behavior (“stim”), so suggesting an alternative option for stimming like chewing gum or a silicone necklace, or even repetitive moving of hands and feet, may be helpful.
Mindful eating and intuitive eating are usually built into treatment centers’ nutrition programs. Know that interoceptive awareness in neurodivergent people can be challenging, so asking us to rate our hunger or fullness on any kind of number scale is likely going to be ineffective and lead to masking. And too much awareness of the smell, taste, and texture of food might actually be the reason someone has an eating disorder, so let this be one of those “take what you need and leave the rest” skills. Additionally, ADHD clients might experience silence as intolerable under-stimulation, so consider allowing them to watch TV when they’re eating independently and use a fidget at the table, or cutting out your usual mindful meal meditation. Rhetoric about “normal eating” in particular can be problematic. Who’s to say what’s “normal”? This word is associated with trauma for many neurodivergent people.
Adopting a new framework
I’ve talked a lot about the importance of talking to clients and trusting their internal authority as a pathway to permission for them to trust themselves again. So to sum up, let’s take a look at some key themes that make up the backbone of affirming treatment:
• Neurotypical is not the default. Neurodiversity is actually quite “typical,” especially in the world of eating disorders.
• Exposure therapy and behaviorism are not catch-all treatment approaches. It’s important to separate the eating disorder from the neurodivergence by asking, “Is this a coping mechanism that is causing harm, or is this a part of this person?”
• Performative recovery is not recovery. If goals are set that aim to change neurodivergent behaviors, treatment cannot be a safe plan to take off the neurotypical mask, and clients will perform recovery on your terms, not theirs, and inevitably relapse after discharge.
• Clients are not using their diagnoses as an excuse to avoid their feelings or be rebellious. It is a healthy part of their identity and needs to be affirmed to heal.
• Behavior change doesn’t need to be a pre-requisite for doing the deeper work. Process underlying issues with clients and check in along the way about what job the eating disorder is doing and whether it’s still needed.
• Staff doesn’t get to decide when clients are ready to have their control reinstated. Having requests, rules, and redirection stated in a gentle, compassionate manner is a must for maintaining a person’s dignity and respect. Consent is ethically and legally required, so ask clients what they think about an intervention before implementing it, involve them in discussions about their treatment progress, and default to their own expertise on themselves when unsure.
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
