Eating Disorders and Neurodiversity: Beyond Body Image

What do we miss when we assume that eating disorders are just about appearance?

“Common — sense” narratives about eating disorders often refer to body image. To outsiders, those of us with anorexia, bulimia, binge — eating disorder, or some combination thereof are pathologically afraid of fatness, so much so that we we sacrifice our mental and physical health to maintain a desired body weight and shape.

This assumption is wrong for a few reasons: First, people in “socially unacceptable” bodies may have legitimate reasons to alter their appearance. Fatness is stigmatized, and institutional practices normalize discrimination on the basis of weight. Wanting humane treatment isn’t “disordered,” and until we dismantle the negative connotations associated with fatness, many of which have severe, deleterious consequences, some fat people will seek safety by changing their bodies in ways that aren’t “healthy” or sustainable.

Next, not all people with eating disorders are emaciated. In fact, many if not most are categorized as “normal” or “over — weight” according to the very problematic Body Mass Index (BMI) scale. Does this indicate that some us are failures? Are we a group of cosplayers — not sick enough (yet) to achieve the elusive goal of thinness, but doggedly committed to trying even as our efforts aren’t rewarded?

Maybe. Or is it more plausible that for some of us, body image isn’t actually that important?

“Wait a minute,” you may be thinking. “We know that eating disorders are symptomatic of deeper problems — no one thinks that someone starves themselves, exercises compulsively, binges, or purges just to amend their appearance!” This may be true, but even “deeper” analyses of disordered eating regurgitate (pun intended) generic tropes about low self — esteem and the desire for “control.” As someone who is fond of precise theorizing, these assertions are too vague to be meaningful.

Let’s interrogate, for instance, the claim that people with eating disorders are yearning for control: How are we operationalizing control as a variable? Clinical studies on eating disorders are contradictory because researchers haven’t developed a standardized way to measure it. “Personal ineffectiveness,” for instance, is a common proxy for control, but it is ambiguous and has only minor conceptual overlap with the equally popular “lack of interpersonal control.” These distinctions may seem pedantic, but they become important when endeavouring to generalize personal experience to larger populations.

Ultimately, irrespective of whether it’s coming from the academy, clinicians, or lay — people, almost all discussions of eating disorders focus on cognitive processes and cognitive processes alone as they refer to body image.

This is a mistake.

By questioning people’s thoughts, values, and beliefs without inquiring about the embodied experience of disordered eating, including those sensations that exist in the body — mind that can’t be articulated through language, we are ignoring a huge source of potential data. And as someone who is Mad and neurodivergent with a twenty — year eating disorder history, I am regularly reminded that people lack insight into my realities. This is re — enforced every time someone learns I have an eating disorder and rushes to assure me I’m not fat (which is fat — phobic and needs to stop) or otherwise presumes that my habits are motivated by my looks.

Neurodivergence and Madness are nuanced. I prefer these descriptors to traditional “mental illness” labels because they are less rigid, less pathologizing, and offer broader, less prescriptive explanations for why I am the way I am. I have described some of my inner world elsewhere, but to summarize: I process stimuli unusually. At times I am accelerated, and it is painful to watch people try (and fail) to keep up with me. In clinical terms I am “manic,” with flighty thoughts, infinite energy, and a propensity for rash, impulsive actions. During these periods I’m also a bit of a synesthete, and reality takes on a hyper — textured quality as though three dimensions have given way to four, five, or six.

This is only part of mania, though: While my communication may be difficult to follow, it is not nonsensical (particularly when writing — I’ve done my best academic work while too stimulated to talk), and though psychiatry frames mania as negative, the partial or total dissolution on self — other boundaries that I experience in escalated versions of mania (which then gets called “psychosis”) has led to profound awareness about myself, the world, and my place in it, as well as enduring connections.

Diametrically opposed to this is the state that follows. I crash — hard — and when this happens, everything is invasive. Lights are too bright, sounds are too loud, smells are acrid and overwhelming, and my entire body aches. I am not “depressed,” exactly, but I am enveloped in a numbing fog that renders me flat, detached, and, at its worst, unable to stand or talk.

I usually exist between these two extremes, but regardless of my mood and energy levels, I live with severe, chronic pain, I contend with violent, unwanted imagery, and I display symptoms of complex post — traumatic stress including feeling as though my surroundings are not real and I may not be, either.

How does this relate to my eating disorders?

At times I meet the full diagnostic criteria for anorexia, while elsewhere my diagnosis is more bulimia or anorexia, binge — purge subtype (which is functionally the same as bulimia but indicates low or extremely low body weight).

I’ve learned that the appeal of some eating disorder symptoms over others is directly related to whether I am closer to being “manic” or its opposite. Mania and anorexia have a bidirectional, mutually enforcing relationship: One enhances the other, and so during periods where I have either been on the wrong combination of meds or have sped up organically, I also tend to be malnourished.

This is because when manic, ideas take the form of shapes (“conceptual synesthesia”). They are crashing waves and they ambush me, ensnaring my limbs and pulling me toward a churning underworld each time I gasp for air. My movements are jerky, and everything is simultaneously too much and not nearly enough. I crave extremes, and while there is euphoria, it is also tinged with fear — I know what happens next.

The one thing that helps is calorie — counting. Doing so causes the voices and imagery to coalesce neatly into graphs and flow — charts, and the repetition of adding and re — adding the nutritional content of what I eat has anesthetic qualities. Strict boundaries around when, how, and where I eat offer the illusion of, yes, control when I feel anything but, and they also play into my obsessive compulsive fixations around metaphorical cleanliness.

I can breathe when I count. And I don’t rely on the same two — three foods because they are low — calorie; I do so because they are cognitively simple, aesthetically predictable, and texturally appealing (what autistics call “same” versus the anorexic “safe” foods).

Paradoxically, though, extreme restriction also exacerbates mania. The notion that anorexia leads to lethargy may be true for neurotypical people, but I feel supra — human when gaunt; ready (and sometimes tangibly able) to accomplish remarkable things.

Throughout, I observe myself shrinking (when I remember to check, that is), but noting that I’m skeletal evokes little — no response. It is one more data point that I process unconsciously, compartmentalize, and revisit after I’ve come down.

Bulimia, on the other hand, becomes necessary after the “feel — good” (in reductive terms) chemicals flee my system. What was easy days or weeks prior requires Hurculean effort, and once the fog descends, binging and purging is the only things that propels me off the couch.

Preparing for a binge is far more exciting than the binge itself, however. The split — second decision to do so is like taking a hit of adrenaline, and this is a welcome reprieve from my otherwise listless melancholy. Suddenly I am activated, and whereas just prior I had been too fatigued to do anything but stare without seeing at the wall, I now rush to and from the store with laser —like focus, my formerly flaccid limbs striking the concrete with decisive, purposeful strides.

This lasts until I’m done, at which point the exhaustion and hopelessness return. Often this means I binge and purge again shortly thereafter, and I continue this pattern until I sedate myself at night and toss fitfully until morning. It’s gruelling, but it also keeps me going.

What I have described thus far is mostly the intersection of “bipolar disorder” (for lack of a better term) with disordered eating, but this is one piece of a multi — faceted puzzle. For example I also have horrific nightmares, and coming — to at 3 or 4am drenched in sweat, disoriented, and screaming also often sees me binging and purging before I even realize I’m awake.

Beyond this, my eating disorder is intertwined with my relationships. Ample research points to family dynamics and the development of anorexia and bulimia, but it frequently employs statistical analyses to quantify attachment patterns or to assess how one absorbs eating and body — image concerns from older female relatives. This glosses over phenomenological link between childhood and the rewards one may derive from starving, binging, and purging.

In my twenties, for example, as I distanced myself from people who had harmed me, vomiting became an exorcism. I hated that every choice I’d made (ranging from degrees to relationships to burning my life down repeatedly when none of it felt authentic) had been a direct response to trauma, and whereas binging emulated the suffocation I felt as a child, I also envisioned myself expelling my caregivers from my psyche every time I purged.

It was cathartic as hell.

A few things have helped since, but none more than the frenzied, spontaneous conversations I had with imagined family members while alone in the bathroom. These dialogues forced me to confront parts of myself I couldn’t admit existed, and having them illuminated for me parallels between my eating behaviours and occurrences that I had hitherto repressed.

This is an incomplete summary of how eating disorders are visceral and may manifest differently with neurodiversity. For brevity’s sake, I won’t describe in depth the tactile utility of bulimia when I’m dissociated, depersonalized, or derealized (it is the only thing that makes me and those around me real), nor will I mention how it assuages physical pain, nor will I elucidate how my eating disorders interacts with my alcoholism, stimulant use, or opioid use disorders (which is a novel — length diatribe unto itself that I may write at a later date).

I will say that eating disorder treatment, research, and non — profit supports get most of my experience wrong. They endorse externalizing techniques (imagining one’s eating disorder as a brain — hijacking “abusive boyfriend,” for instance) which may work for some but doesn’t resonate with me. I know that my ability to self — regulate through disordered eating has not just led to breakthroughs, it has also kept me alive.

Furthermore, talk therapy about weight loss or gain, listicles on how to “survive the holidays” when surrounded by food, and prompts to trace my body outline to “prove” to myself that I imagine myself to be larger than I am (again: fat — phobic) feel asinine, and I imagine I’m not the only one for whom these activities are alienating.

So what would help?

First, we don’t need more research on eating disorders, but we do need better research.

The majority of eating disorder studies aren’t about just body image, but they still use structured or semi — structured questionnaires to simplify causality. Interviews or social media analyses can be more in — depth, but all these methods tend to draw superficial conclusions from large data sets without providing information on how people’s behaviours make them (or their bodies) feel.

There are notable exceptions, but critical research tends to be exploratory, is considered niche, and is thus rarely published in high — impact (well — read) journals. There are constraints with immersive research, but even if it isn’t strictly reliable or replicable, subjects are more likely to be treated as humans. beings.

Next, (better) research needs to be translated into clinical praxis.

Clinicians and the public must recognize that while we can discern patterned responses among those with eating disorders and make predictions about our behaviours, eating disorders are also intensely personal.

Assumptions in the eating disorder field have deadly implications. For instance, we now know that those who have been diagnosed with attention deficit hyperactivity disorder (ADHD) have higher prevalence rates of eating disorders than the general population. There are many hypotheses as to why this may be, but confirmed is that for those with ADHD, stimulant medications aid with executive function.

However, most eating disorder clinicians balk at prescribing stimulants because they reduce or eliminate hunger. This means that many people with concurrent ADHD and disordered eating are receiving ineffective talk therapy when they don’t actually have the capacity to execute meal — plan adherence, and some are accused of drug — seeking or purposefully skipping meals when they explain this to practitioners.

This is just one example, but eating disorders appear and are sustained through layered adaptive responses that don’t usually have a single fix, particularly when appearing in conjunction with neurodiversity.

Finally, we shouldn’t discourage people from seeing how their eating disorders are useful. Much like the “abusive boyfriend,” we are drawn to phenomena that make us feel good or better about how things presently are.

Unlike the abusive boyfriend, our eating disorders don’t have agency of their own. By denying that they are produced by us, for us, we miss what they may be telling us about ourselves and our environments. While it’s most simple to focus on our symptoms, they are just that — symptoms — and they won’t magically disappear.

I have grown accustomed to being called a “very complex case” in mental health contexts, which may be true but is also a cop — out from professionals who are often too convinced of their efficacy to actually listen when I assert my (rather human) needs.

The one difference between myself and most patients is that I have had access to education that has encouraged me to interrogate dominant discourses about mental health and illness, and I have acquired the language to rebut. I am not a passive recipient of “care,” and “complex” has, over time, been a way for clinicians to tell me how difficult I am without having to directly call me this. To this I say, welcome to my world.

I’m also aware that if I looked different I would likely be more concerned about my appearance. I am a benign, palatable White woman, and so everything from my anger to my crack use to my binge — food shopping is filtered through a lens of acceptability. I haven’t written this to say that we should stop talking about fat — phobia or that we shouldn’t advocate for the inclusion of all bodies, all the time, but rather to point out that when it comes to eating disorders specifically, one size does not fit all.

Author. Academic. Mad Woman | Critical takes on health and illness | Pre-order my book: https://www.amazon.ca/Becoming-Nicole-Luongo/dp/177133813X

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