Beyond the binary of good and bad eating disorder treatment

When I entered the eating disorder field only about seven years ago, it was considered "radical" to stray too far from "traditional eating disorder care," to name the harm happening there at all, let alone to practice outside the confines of exposure response prevention and CBT-E, two manualized "gold standard" treatment modalities most often practiced behind the walls of residential facilities. These days, from where I stand, there's still a stark divide amongst ED specialized clinicians: those who lean more "by-the-book" a la a focus on behaviors and tough love, and those who are open to throwing out a conventional treatment plan and taking our clients at their words. And that binary is incomplete. The field is divided on at least a dozen more complex, nuanced themes centered around what makes the best, most effective care. Just like America's two-party system, thinking about eating disorder field in black-and-white terms leaves a lot of voices out. The idea that we can categorize providers as affirming and non-affirming; radical and basic; carceral and anti-carceral, and so on, is a cognitive shortcut, but it's not reality.

Eating disorder care as it stands is set up in such a way that more and more neurodivergent clients are choosing to forgo it in favor of treatment that they find affirming at the outpatient level. What is affirming for one person may not be affirming for the next. Some of the most common reasons for choosing treatment outside the box include: having choice in who they're working with, ensuring body autonomy, prior iatrogenic harm that makes a treatment setting re-traumatizing, and individualized support that is truly tailored to their needs. But in doing so, they are also giving up some things that are built into old-school treatment that (perhaps inadvertently) benefit some neurodivergent brains.

In a time when eating disorder providers are drastically shifting (or attempting to shift) course to accommodate new information and understanding about who gets EDs and how their struggles look different from the thin, white, cis, neurotypical female around which treatment was once conceptualized, it's important that we not "throw the baby out with the bathwater."

To give you an idea of my lens, I once stopped seeing a provider of my own who I felt was too autonomy centered. What?! Stacie, aren't you a harm reductionist; don't you preach client-led care? Yes! But in moments of analysis paralysis, in the depths of a freeze response or of autistic inertia, I need someone I can trust to pull me out, to know me and my values and goals well enough to temporarily act on my behalf. That too is liberation. I can't have someone so afraid of impinging on my autonomy that when I say "I don't know what to do," they aren't willing to make any suggestions. Sometimes it's my inability to take the lead in my own care that is my support need, not because I can't be trusted or because I don't know myself best, but because I'm overloaded, I'm stressed out, and I need to be unburdened. I can identify this and ask for it, but only from providers who aren't afraid.

We shouldn't have to choose between everything or nothing. In an ideal world, treatment would be set up "buffet style" - clients would be trusted to take what they need and leave the rest without the accusation that their "eating disorder is talking," and insurance would make it possible for treatment centers to offer flexible programming rather than tying their hands into requiring attendance in inaccessible or unhelpful groups and a certain level of compliance to demonstrate "effectiveness," which only leads to masking, to ensure reimbursement for services.

We can dream - and we should advocate - but the meantime, while we wait for systemic change, it's important that your cost-benefit analysis in choosing a treatment path be fully informed. A peer support-based "DIY" outpatient alternative to the classic linear progression of leveled care (i.e. inpatient to residential to PHP to IOP) puts the client at the wheel but at the loss of some of the following, each with its own pros and cons:

1. Extrinsic motivation Behaviorism is king in treatment - that is, complete your meal plan today and you can have coffee tomorrow. Unilateral decision-making around "privileges" like access to technology, entertainment, and even permission to move one's body in a way that feels good is the norm, a constant dangling carrot hanging over clients in treatment settings, with or without specific consent to this intervention (when you sign yourself in, you consent broadly to the clinical judgment of your assigned team). The name of the game is behavior change, as this is what research measures "success" by, so this is what insurance pays for. And in recent years there has been more pushback and calls to move to sustainable methods that go underneath the ED iceberg past disordered eating and down to the trauma, the family dynamics, the sensory distress, etc. to make it possible for people to maintain the changes they're performing for compliance in a treatment setting when they are on their own. To save time and frustration and cut down on the steps, many people are opting to start at a lower level of care and work on underlying issues earlier in treatment, at the same time as or before changing behavior with the hopes that the motivation for change will come next. As a provider who's witnessed the "revolving door" phenomenon more times than I can count at higher levels of care, I can identify a fawn response from neurodivergent clients as the top culprit. So I'm in favor!

   However (nuance alert), when you take away the dangling carrot, you can get comfortable sitting in purgatory for longer. ADHDers and others who struggle with delayed gratification and taking non-preferred action now to support ideal outcomes later are particularly malleable in treatment settings and more likely to struggle without imposed consequences. I hear in outpatient work on things like cleaning the house or getting started with a hobby, "If no one makes me, I won't do it." The same goes for changing eating habits. And that can be okay as long as the individual is okay sitting in sameness. But most of us grow weary of wanting things to be different but not feeling intrinsically motivated enough to do something about it 'til it gets bad enough. It takes moments of crisis, panic, or another intense, unpleasant experience to shake us out of settling for good enough. Prioritizing is an executive function, and in outpatient, no one will or can do it for you. As Taylor Swift said in her NYU commencement speech, "Cool news is: you're on your own now. Scary news is, you're on your own now." There is no "right" or "wrong" priority as traditional ED treatment is known to fear-monger around (e.g."You can choose to stay in school instead of go to inpatient, but your grades won't matter if you die from your eating disorder"). But there is overwhelm from decision-making around what feel like two equally important or unimportant options. In higher levels of care, they'll do it for you.
   

2. Quantifiable metrics Treatment centers are always tracking data to determine length of stay, ensure insurance coverage, and sometimes even as a part of their own program evaluation. All providers should be doing this in some way. It may look like tedious and repetitive self-assessment measures; regular measurement of quantifiable biomarkers like weight, vitals, and lab values; or observed patterns in less formal self-reporting (e.g. "How many hours of sleep have you been getting lately?"). However a provider chooses to answer the question "Is what we're doing working?" they should be collaborating with you as a member of your own treatment team. That happens at all levels of care, per ethics codes, but the higher you go, the more inundated clients are with data. That can be really frustrating, whether you're being told "you're fine" or "you're sicker than you realize," if your internal experience doesn't align. On the flip side, it can be incredibly useful for neurodivergent brains that are drawn to numbers or just struggle with self-trust due to trauma, chronic invalidation, and lack of objectivity.
   

3. Being pushed not to settle for "good enough" In autonomy-driven treatment and peer support spaces, clients are encouraged to define recovery on their terms and within their own boundaries and desires. This is welcome to fluctuate, and folks can pause and pick up in any direction at any time. However, there is no external pressure to do so. This can be more of a double-edged sword than we neurodivergent-affirming providers like to admit. When you're allowed to pursue whatever version of recovery sounds ideal to you without immediate consequence or reward, you also have to be the one to say, "I'm not happy with this definition of recovery, and I'd like to change it" if that does happen. That can be hard to do when you've attached value or meaning to it (such as, "Wanting to eat more means I'm out of control" or "Because I don't want this ED anymore, I was never sick to begin with, I'm a fraud.") Often, especially in early recovery, it's very useful to believe we don't have choices. But it can also be a source of trauma, suicidal ideation, and helplessness. Working in treatment, I heard coworkers condescendingly refer to the "quasi-recovery" clients would sometimes settle into - visible in behaviors such as choosing cauliflower pizza over the real thing or in following their meal plan but rigidly adhering to an exercise routine - as a "level 2 life," referencing the center's level system of rewards in which they were hadn't truly let go and seen the supposed joy that not listening to their eating disorders could bring. I'm of the opinion that what may objectively be a "level 2 life" of being controlled by the ED for one person can actually be self-accommodation for another, even if it looks the same from the outside. For example, someone with high vestibular needs who has never been able to adequately fuel themselves and now can is living their version of recovery. If they find that they want to come back and tackle the anxiety that comes up when they eat more, though, they will have to find the motivation to do that without being prompted by people who have been observing and making judgments about their behavior. For some, that's an easy tradeoff to decide on; for others, it's less clear and depends on how much they've come to trust themselves.