Usually, it goes like this. The videos are set to “Skinny Love” – the Birdy version, never Jon Iver. First come the childhood photographs, and wistful memories of normalcy (“I was a happy kid”). Then, around age 12, plus or minus two years, the slideshow takes on a more somber tone, as the subject inches closer towards illness. This might be prompted by physical changes brought on by puberty – acne, breasts, a formerly lithe body turned plump and curvy. Or maybe it’s the stress of middle school, or the death of a loved one, or cyberbullying. Shortly thereafter, the subject begins to eat less and less. At first, it feels good. The photos no longer feature friends or family members, just images of a person standing in front of mirror after mirror, growing thinner by the second. Sometimes, weights are listed for good measure. Then there’s rock bottom, in the hospital, perhaps with a feeding tube and IVs in both arms, and finally, the recovery, finding friends or spirituality or veganism. And all of these videos have the same title: “My anorexia story.”
My life, over the course of the past eight years, could easily fit into this sort of narrative. My experience hasn’t followed the exact trajectory described above, but really, no one’s has. This is a prototype, a combination of real and perceived stereotypes, distorted by what we choose to see (or not see) in ourselves, warped by our desire to stand out in a way that will also make us fit in. By telling our anorexia stories, we collaboratively form a collective narrative, to which we all contribute, from which we all take. I’ve thought about this a lot lately, as I’ve been writing this blog and describing my experience of autism and severe mental illness in fairly public ways. But every time I’ve sat down to write or tell my anorexia story, I find myself drawing a blank, because the truth is that I don’t have just one story. In fact, I don’t think any of us do. Instead, we have dozens, maybe hundreds. Some are boring (“I went to the grocery store. They didn’t have celery. Went to another grocery store. They had celery.”), while others never get old (“Remember when we all had to evacuate Malibu because of the fires and we ended up in an air BNB for two weeks?”). Some are sad and some are happy and most don’t fit into that kind of binary, but the point here is that realizing this is what enabled me to sit down and write this post, because I have lots of stories, and I don’t actually need to weave them together in the form of an all-encompassing saga. I’ll probably blog about this again. Or maybe I won’t. Either way, pressure’s off.
I got sick when I was 12. In retrospect, it made a lot of sense. I have a stereotypically anorexia-prone personality: obsessive-compulsive, controlling, harm-avoidant, perfectionistic, highly anxious. Then you add in a rare pain syndrome and a weird orthopedics problem, plus a couple depressive episodes, and there’s your perfect storm. Unlike most people I’ve met, I didn’t gradually “descend” into anorexia. (Interesting how we use these spatial metaphors.) I really did wake up one day and decide to stop eating. Incidentally, while this had to do with something I’d read, I don’t believe that books or online forums or movie or “the media” cause eating disorders. “Genetics load the gun, environment pulls the trigger.” Cliches are cliches for a reason.
Restriction, compulsive exercise, a lot of rules about food, medications, hospitals. Constantly fighting the doctors, losing weight, being forced to gain it back, losing it again, cheating the scales, rinse and repeat. Lots of psych labels thrown at me. I was being irrational, obsessive, perseverative, delusional. “You’re in denial,” one of the doctors told me, to which I responded, “No, I’m not.” I missed quite a bit of school, somehow managed to graduate on time, planned out my gap year only to have everything fall through because I was back in the hospital, yet again. Then more hospitals after that, medications that didn’t work, therapists wondering why I never made eye contact, why I was always covering my ears and rocking back and forth and muttering to myself.
That, by the way, is foreshadowing. (No one’s ever accused me of being subtle.) My autism diagnosis wasn’t the magical key that solved all my problems and I lived happily ever after the end, but it did make an enormous difference, enormous enough for me to eventually leave the hospital(s) and start college, which was something of a miracle. And now, a year later, I wouldn’t call myself the poster child for recovery, but my heart is beating an appropriate number of times per minute and I am officially not malnourished or dead. All in all, not too shabby.
I don’t want recovery to be a big part of my identity. To be clear, this is just my personal preference. For some, recovery is a fundamental part of who they are, and I have a great deal of respect for that. I know lots of recovered people who do amazing advocacy work to support individuals and increase access to treatment and go on walks to fundraise (which I’ve always found a little bit ironic), and I’m incredibly grateful for them. Right now, though, I’m not interested in being very involved with these kinds of initiatives. I am, however, very interested in the intersection of autism and eating disorders, because despite the fact that the two conditions frequently co-occur, there’s astonishingly little research on the subject.
Part of why my eating disorder was so hard to treat was because researchers have yet to develop clinical protocols specific to autism. The usual therapeutic modalities and systems weren’t designed for autistic people, but because so many clinicians didn’t realize I was autistic, they simply assumed that I wasn’t trying hard enough, or that I was untreatable. Doctors and therapists would tell me things like “your recovery is up to you” and “we can’t help you if you can’t help yourself.” In addition to being profoundly unhelpful, these statements made me feel awful, as I was essentially being blamed for having an illness, and they reinforced the very beliefs that were contributing to all my problems: that I was worthless, incompetent, a failure, and so on. This is why I’m now such a firm believer in the notion that patients don’t fail treatment; treatment fails patients. And although I don’t have the data to prove it, I have a strong suspicion that treatment fails many autistic patients, which is why I’m writing this post.
I have a lot of opinions. At any given point, there are at least 30 ideas swimming around in my head about what to write here or post on Tumblr or turn into an op-ed. There’s definitely an element of triage going on, as there simply aren’t enough hours in the day to get even a seventh of my words down on paper. But I hold onto the list and it comes in handy, so I always have something to write about. Thus, further posts about autism and anorexia might cover, in no particular order, the challenges of being autistic in group therapy, the difficulty of distinguishing eating disorder behaviors from autistic rituals, the role of autism acceptance in recovery, how residential treatment can be adapted to better serve autistic patients, some of my better treatment humor (a dietitian once told me I should do stand-up eating disorder comedy), reflections on what group therapy has taught me about other humans, and a ranked list of my favorite coping skills.
Oh, and that bit about evacuating Malibu during the LA fires? That really did happen. Early November of 2018. Hills burn in California… The 16-mile car ride to Santa Monica took eight hours, and everyone was happy we couldn’t stop for lunch. More on that later, if anyone’s interested…