torsdag den 22. maj 2014

Disordered Eating on the Autism Spectrum - A Personal Story

Over the course of the last six months I have discovered two things about myself: That I have autism spectrum profile, and that I have an eating disorder. The ASP part is something I’ve been considering and suspecting for many years, while the eating disorder was a punch to the gut out of nowhere. However, they both have in common the fact that I’m now looking back at so many things that have happened or that I’ve done and thinking, “How on Earth did no one figure it out sooner?” The answer seems to be a lack of information, or rather, a lack of information conveyed in an appropriate way.

Several studies show that there’s correlation between having an autism spectrum profile and having an eating disorder (at least in the case of girls, but I see no definitive reason that it should be different for boys or nonbinary people). The results were found through measurements of the empathy quotients (EQ) and systematizing quotients (SQ) of a sample group of girls, where indeed many of the girls suffering from eating disorders ended up with test results that were similar to those matching an ASP.

The results of the studies make sense to me, but something vitally important is not present in the conclusions. Namely what eating disorders and the autism spectrum have to do with each other – what happened with these people? Is it causation or correlation? I was in a similar situation when I discovered the facts that I had both the one and the other. I couldn’t realize and accept being autistic until I moved beyond the otherwise excellent medical literature describing “symptoms”, “problems”, and “educational tools”  and started reading stories by autistic people who, from their own point of view, talked about their lives – their whole, normal lives. I didn’t discover my eating disorder, either, until I realized that getting one of those could be due to something entirely different than low self-esteem and a desire to be beautiful. In other words, I feel a lack of personal stories that can explain what’s going on inside a person’s head – their mind – rather than external symptoms and neurological reasons.

Hence this entry – I want to make my own contribution. Here’s my story.

If someone had asked me a year ago what mental issue I’d be most likely to be dealing with, “an eating disorder” would have been my last guess. Everything I knew about eating disorders were infinitely removed from my own self-image: My self-esteem and self-worth were fine (occasionally I’d even be called arrogant), I didn’t worry much about what other people thought of me, and even though I was somewhat chubby, I had no particular interest in or motivation to lose weight. Like in the cases of most other people with eating disorders, it started out benign. I had a general desire to become healthier, and so I started eating differently and exercise more – the weight loss that followed was merely a bonus. Even when I got to the point where I was exercising at least an hour a day, every day, there were no alarm bells going off in my head when I got on the scale and felt a strange satisfaction from seeing the number being slightly lower than last time. I didn’t associate these symptoms of an eating disorder with my experienced reality, because I wasn’t aware that some of the challenges I had could lead to developing one of those.

What were those challenges? The key words here are control and predictability, or rather the lack of these. I had been improving my health for little less than a year when the eating disorder started sprouting. At this time, I had just finished my last year of secondary school and was facing a period of great uncertainty. My long term plan was to start university, which was something I looked forward to immensely, but I wanted to take a leap year both in order to get a break from school and try something different, and because my dad had invited me for a three-month trip to China, where he was going to work. Furthermore, the plan was for me to move out of my parents’ home and into an apartment with a close friend once I returned from abroad, and over the course of the summer, it was decided that my parents and brother would be moving away from the home I grew up in as well. This move ended up taking place while my father and I were in China.
This all turned out to be much more change than I could handle. The whole summer I went around with a nagging feeling of anxiety in the background, and I couldn’t figure out how to verbalize it. Each time my parents’ moving plans were brought up, I wanted to cry – my mood was spoiled no matter how happy I had felt the moment before – and I didn’t understand why. I felt uncertain in regards to both moving in with my friend and going to China, but I didn’t feel I could say anything about it, for several reasons. Through my whole life, my own and others’ perception of me was that of someone fussy, and I knew I had a tendency of giving up too quickly and not trying out new things – I wanted to change this, especially since I was about to become an adult and enter a new phase of my life. Besides, everything was already planned out; I didn’t want to be a bother and complicate things. My anxiety grew throughout the summer, and the symptoms of my eating disorder accordingly. In the weeks before it was time to leave for China, I spent even more time working out, my internal reasoning being that the food in China was probably fatty and that I wouldn’t have much time for exercise (even though I was going there to do kung fu), so I ought to lose as much weight as possible so that it would be okay if I gained some back.

In August, everything I owned was packed into moving boxes and a single suitcase, and I was off to China. I remember sitting in the airport train, looking at my reflection in the window and thinking unhappily, “I’ve gotten so nicely skinny – I probably can’t maintain that over there.” Today, looking at pictures taken around that time, I think I look fat in them. I had lost about three kilos during June and July, but after three months in China, at least 15 kilos were gone. They continued to fall off my body like dead leaves once I returned home.

In China I was miserable. Some homesickness in the beginning was to be expected, but in my case it never went away. If anything, I might have gotten slightly used to the painful longing. When I look back today, I can see that I felt I had lost all control of my life. Not only did I know that I had a minimal amount of influence on the huge moving process going on back in Denmark, even though I wanted to participate (I had a lot of things to deal with regarding economy, change of address etc.), but in China, too, things wouldn’t work out for me. I took kung fu classes and Chinese classes a few times a week, but had a lot of trouble filling out the rest of my time. Throughout my entire childhood and youth, I had always been working on some sort of creative project, often to the point of not always feeling like I had time to go to school, so everyone, me included, had expected me to spend the journey and the rest of my leap year drawing and writing. But now, I could suddenly produce nothing. I had also been planning on meeting new, exciting people in China, but having never been very good at socializing, I had no idea how to do that. Sure, I had the theory – go places, talk to people – but it was too overwhelming to figure out how to use it in practice. The few conversations I had never led to any real relations, and I couldn’t handle going places where I didn’t have a specific plan for what to do. To fill out my time, as well as regain some control, I started exercising an extreme amount and be very careful about what I ate. I don’t want to go into details here, but if you’ve dealt with eating disorders, you probably know what I’m talking about.

After about six months of treatment, I’ve been able to identify how my eating disorder and my autism spectrum profile are closely linked. It has to do with both the challenges/problems I had, as well as how I reacted to them (that is, by developing my ED).
I’ve always known that I function best with a specific plan to follow, but it wasn’t until now I’ve realized to what great extent this is true. Without the secure “attending school” context I had been living in heretofore the uncertainty in my life was simply too great. This need I have originates in an atypical imaginative ability – I might be creative, but when it comes to deciding what to do, I’m completely unable to manage the situation if I have too many non-concrete possibilities. I need specific options. Otherwise I’m unable to imagine situations different than the one I’m in at that exact moment – this explains why I couldn’t explain the anxiety I felt towards my parents’ and my own moving. I couldn’t verbalize the problem because the problem was that I couldn’t imagine it. On top of that, I couldn’t imagine how to improve the situation, so I assumed that there was no solution at all. It’s the same reason that I couldn’t get started on any creative project or go meet people, because I didn’t know where to begin or where to go next, and then I could do nothing but withdraw and proceed unchanged, passively.
This challenged imaginative ability can also explain parts of my ED. Eating less and thus lose weight is a nice, tangible type of control – it’s logical, predictable to a certain extent, and the result, a weight loss, is objective and doesn’t leave much room for interpretation. With the internet at hand, I could easily look up nutrition values and calorie charts, and something like exercise and diet is a great opportunity for planning and scheduling. So this meant not only that the eating disorder had a solid foundation, but also that it has been able to maintain its grasp on me for a very long time. When I came home from China, I actually felt I had hit my target weight, and yet I couldn’t stop losing more. This was because I continued to eat and exercise almost exactly like I had done so far – I was afraid to do anything else, because I couldn’t imagine what kind of effect it would have on my body, my weight, my life – I just assumed it would be the worst imaginable.
Here you might be tempted to think that all the aforementioned research I had done on calories and metabolism would mean that I would have no problem figuring out how my body would react to more food, but this can be explained with another challenge many autistic people face. Namely problems with experience application – if a situation is similar to some one has been in before, yet has some differing property, it’s easy for a person with an ASP to perceive it as an entirely new kind of situation, where previous experiences don’t apply. This meant that during my treatment, I constantly felt the need to “test” the diet I had been given: If I eat a little less than this, will I gain weight anyway? How much can I eat while still losing weight? I gained weight last week – will I gain the same amount if I have eggs instead of tuna for lunch? I have a need for much more specific information than is appropriate or practical, which gives the eating disorder a lot of power.

Another, and perhaps more tangible, connection between autism and eating disorders is sensory processing. A characteristic of autism spectrum profiles is that one perceives and processes sensory inputs differently than neurotypical people; this is what causes a lot of autistic people to have trouble with noise, light, facial expressions, eye contact and/or many other things. Another way this manifests itself is through the relationship with food. Like many other people with ASPs, I’ve always been a very picky eater. Not only the taste needed to be just right (and I mean just right; I’ve never been able to eat anything I didn’t think tasted nothing short of wonderful), but the consistency, smell and sometimes colour of the food were huge factors in whether I’d like it or not. That alone is perfect nourishment for an eating disorder – it’s very easy to develop a very restricted diet when for one reason or another you don’t feel that you can eat certain things, especially if you have psychological reasons to not want to eat on top of it.
Furthermore, it’s not only extern sensory inputs that are processed differently. Signals from the person’s own body, too, can be hard to discern. In my case this has meant that I have trouble figuring out whether I’m hungry or full, or what the cause of pain, tiredness, dizziness etc. is. In addition, the latters are sensations that as a child I’ve felt very strongly, and I’d often inform my parents or other adults about them as soon as they arose. Since there was rarely any particular or serious reason for my malaise, I’d be told to ignore it – and when you’ve spent your whole life practicing ignoring the signals your body is sending you, it’s easy to believe your eating disorder when it says that the hunger you’re feeling is fake and meaningless.

Many factors are in play here, and I have no doubt that there are many more than the ones I’ve mentioned. Especially if you look at those that I haven’t been affected by personally, but which have great significance for other people with both autism spectrum profiles and eating disorders. For example, I haven’t mentioned many particular social challenges, but they definitely play a part as well when you look at someone’s self-esteem, which often is significant in developing an ED. Because of this, I encourage anyone reading this and who also has both an ASP and an ED to write their experience down.

Because I believe that it’s useful knowledge. Eating disorders – and the autism spectrum, for that matter – carry a lot of misconceptions and negative connotations. If we can spread enlightenment and information to doctors, other professionals, as well as the affected themselves, I imagine that it’s possible to help many people.

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