I feel if I had been listened to when I explained that some of my 'issues' with food were extremely long standing and were not the eating disorder, if that had been explored further then maybe I would have received an autism diagnosis much earlier. Maybe this would have helped recovery, that the eating disorder wouldn't have lasted so long. I used anorexia as a coping mechanism, as a way to dull the world I didn't understand, that I felt I didn't fit in to but didn't know why. What I didn't know was that I was overwhelmed by the sensory input and having to behave and perform as expected, which got harder as life's demands increased. If professionals had listened when I explained that I couldn't answer the questions they were asking, that I couldn't engage in therapy the way they wanted and actually listened to my reasons why when I was explaining that I cannot make my brain think in that way (mainly CBT) than just telling me it was anorexia talking, then maybe an autism diagnosis would have been explored earlier.
I understand it’s probably hard to separate autism and the eating disorder when someone is very ill but just taking time to listen when someone is really trying to explain would have improved trust and the therapeutic relationship. I am very black and white in everything, but this can actually be a strength when I was asking for a meal plan to be set that I knew (from experience in a previous service) that I would completely stick to as it’s a set of rules I agreed with. Instead I was told I needed to intuitively eat which I don’t understand when I don’t always feel or recognise hunger and I have very little interest in food.
My eating disorder didn’t start because I went on a diet or wanted to lose weight, it started as a means of control when life got too stressful for me to continue as I was. It was my way of dulling the world to be more manageable. It then became a label, I knew who I was, I was anorexic. It wasn’t a good label, it’s not something anyone should be proud of or want to achieve, but when I didn’t know how I fit in and how to behave, it gave me something I could be and it was a very scary thought to lose that label, no matter how much I knew I shouldn’t want to keep it.
My autism diagnosis is fairly new to me (only a year) but so far it has allowed me to be more forgiving to myself, a completely alien concept prior. It has given me answers, clarification on my behaviours, thoughts, struggles. Ironically, I feel less like I’m on the outside now, despite the diagnosis still separating me from the majority of my family, friends, colleagues and the general world. But now I can allow myself to take steps I need to in order to dull the world: wearing ear plugs, removing myself from overwhelming situations, not berating myself when I’m exhausted after an event with a lot of people. It’s still a scary world but I’m hoping now I know why I often struggle with it I will feel less like I need the eating disorder to help me cope.