An Eating Disorder

Eating disorders appear to be frightfully common among autistic females and those AFAB (which is not to minimize the many affected and often overlooked males). Almost every autobiography I've read written by someone in this demographic alludes to anorexia or a related eating disorder.

I'm not talking about avoidant/restrictive food intake disorder (ARFID) here, as is often assumed when one speaks of eating struggles and autism. That is not something I have any experience with. I'm talking about restrictive eating due at least superficially to body dysmorphia and a fear of gaining weight.

Approaching this topic from the opposite direction, I've read estimates that as many as 40% of people with anorexia are either autistic or show characteristics of autism.

Eating disorders carry their own particular horror. Mortality rates are shockingly high. Trying to support an autistic child through pervasive emotional dysregulation is hard enough. Add into that mix a child who cannot eat, sometimes for periods of over a day, and things spiral quickly down to very dark places.

If there is such a significant overlap between female autism and anorexia, surely informed help is out there somewhere? So far, almost nothing that I've been able to find. Just a lot of missing road maps and dead ends. For all the stories I've read of autistic girls and women struggling with eating disorders, there is no shortage of accounts of ineffectual or harmful treatments (if treatment can be accessed at all), but virtual silence as to "things that worked".

So, we have had to go off the beaten track. I've gathered one small insight here, another tiny piece of the puzzle there. Sometimes help comes from ongoing supports; other times, from fleeting encounters.

Conceptualizing the Eating Disorder

When in the grips of her eating disorder, Oranguette would be adamant that it was THE ONLY issue, and was exclusively related to fear of weight gain and body image issues. Which was subjectively true.

Yet, in our corner of the forest, community resources focused on eating disorders typically do not deal with autistic clients, due to the complexity that neurodiversity introduces. We were advised to seek out supports for autistic people instead. At many points, Oranguette's eating disorder was deflected and invalidated.

I believe that both of these perspectives contain some truth, despite their obvious shortcomings. I and various medical professionals absolutely should have quicker to accept Oranguette's internal experiences regarding her eating disorder. After all, why should a person be denied treatment for one condition simply because they have another? An autistic individual can have medical conditions unrelated to their autism, and being autistic should not mean being denied treatment for a broken leg, say. Why should an eating disorder be any different?

However, the other truth is that the eating disorder co-occurred with what seemed like a thousand other wildly self-destructive internalizing behaviours and mental health presentations. Looking at each of those in isolation just led to confusion and superficial, disjointed, unhelpful "treatments". A holistic viewpoint has also proved necessary.

Whichever perspective we choose when beginning our attempt to understand the eating disorder, it is crucial to ask my favourite question: why? Why an eating disorder?

Fear of weight gain and body dysmorphia were linked to bullying, social challenges, struggles with self-esteem and boundary setting, and the harmful effects of social isolation. Why? Social differences due to autism factored in.

Asking "why" more broadly around self-destructive behavior led back to ideas of autistic burnout. Alexithymia also reappeared as a key piece to the puzzle. The eating disorder can be seen as a means of releasing emotions that cannot otherwise be understood and articulated.

Ideas related to Pathological Demand Avoidance provided a complementary set of potential answers to the question "why?". The eating disorder can perhaps be seen as means of control for an autistic individual in a world that leaves them feeling continually out of control. To take that a bit further to a hypothesis that resonates more fully with me is the idea that the restricted eating may in fact have become ingrained as a stress response, sort of a "fight, flight, freeze, forgo food, ..." kind of response. A nervous system response, if you will, of a PDAer who is almost always trapped in a dysregulated state.

Harmful Approaches

Unsurprisingly, any form of compliance-based approach to eating disorder treatment did not work for us, for all the same reasons I mused about here. That included enforcing meal times, food types, "setting expectations", and having life stop until after eating. All of those were epic disasters, as one would expect with a PDAer. Fortunately, trying to follow this advice was a very short-lived experiment, as it was wildly counterproductive and damaging to our parent-child relationship.

Not appropriately acknowledging the eating disorder as such and not treating the issues around body image and weight was a mistake, but it was also a mistake to ignore the connection to autistic burnout and PDA. There is a fine line here.

Medication. I do not want to say anything to discourage the appropriate use of medication, but, in Oranguette's case, I do not believe the use was appropriate, nor was it adequately supervised. Imagine being terrified of weight gain, being put on a medication that drives uncontrolled weight gain, and have no avenues to address medication concerns on a timescale of less than months. How, exactly, could anyone have thought that appropriate?

Helpful Approaches

So if conventional first-line approaches failed, what has worked? There was no magic bullet, but a combination of new strategies and perspective shifts have given rise to positive change. Many of these align nicely with neurodiverse-affirming mantras I posted here.

Regulation before Expectation

There is no eating until Oranguette is feeling safe and well-regulated. I have seen her on the edge, staring with a combination of wistfulness, distress, and outright fear at food she cannot eat, and obsessing painfully over her reflection in the mirror. I have also seen on occasion, as she moved towards recovery, those obstacles disappear like the flip of a switch when she is able to articulate the underlying stressors and talk them out, at which point the eating disorder recedes, at least for the moment. Frankly, it is eerie.

All Behaviour is Communication/Look for the Unmet Need

The eating disorder was trying to communicate an awful lot of unmet needs, all of which needed addressing in some way, shape, or form. A need for social acceptance and belonging; a need to be able to recognize and process difficult emotions; a need to acknowledge and process past trauma; a need for self-determination; a need to change all the factors driving autistic burnout. The eating disorder flares up and fades away in a complicated dance with these underlying drivers, including the ones that remain hidden.

When the Flower Does Not Bloom, You Fix the Environment in Which it Grows, Not the Flower

The eating disorder seems to be the nucleus around which Oranguette's mental health crisis coalesced. It is both cause and consequence of many of her other presentations. I imagine it as a large part of the Gordian knot that comprises her mental health struggles. I wish there was a single sword-stroke that would remove the knot. A radical change in environment is perhaps the closest we've come to that.

With kids, environment always encompasses school (whatever form that does or does not take). For us, a shift from mainstream school into a small, flexible, and supported environment has been both necessary and helpful, if imperfect. That change has provided a vital foundation for addressing many of the unmet needs communicated by the eating disorder.

Additional Pieces of the Puzzle

Ongoing ND-affirming therapy is addressing the issues illuminated by the ND-affirming mantras above. Beyond therapy, there is also a need for other practical supports and strategies.

Sports aligned with Oranguette's enduring interests and future goals, and complemented by dietician advice, provide a scaffold for impersonal, safety- and science-based rules around eating.

Autonomy has remained another key. Oranguette needs a high degree of control and freedom to approach eating in the ways that work for her in the moment.

Harm reduction rather than unwavering conformity to some imagined ideal eating pattern has been another useful shift in perspective.

Caveats

At times, therapy has taken on the appearance of a frantic game of whack-a-mole. Perhaps more specifically, a game of whack-a-mole where all of the moles are on fire, and whacking one causes several more related flaming moles (plus perhaps a random extra mole from who-knows-where wielding a flame thrower) to pop up in its place.

Vicious circles and contradictions abound. Regulation needs to precede expectation, but regulation is all but impossible without eating (the expectation). Talking out problems is not possible until there is support for the underlying alexithymia, which is yet another knot to untangle.

Timescales have been measured in years. Progression in one area is dependent on progression in many other related areas, and takes time. There are periods of calm as well as inevitable but discouraging setbacks. Practicalities like school changes are immensely difficult and slow in a system that seems in imminent danger of capsizing completely. Continuity of any form of support is difficult to find.

Yet not everything needs to be solved, nor solved completely. Imperfect and temporary solutions can provide enough of a lift to slow the vicious downward spiral, and free up enough capacity to take the next step. Recovery builds slowly. Will the eating disorder eventually fade into the past, its grip finally released? I have seen other self-destructive behaviours extinguished in a similarly slow but enduring fashion after our switch to ND-affirming approaches. Why not this one?