On November 12th, I was at the National Autistic Society’s conference on autism and eating disorders. The whole day was so eye-opening and thought-provoking. We heard from people with personal experience of either one or both diagnoses, and professionals working in the field. Autism isn’t something I talk about as much but the truth is, I really should.
Not many people know or realise that I, myself, have autism. I was diagnosed at the age of 19 after one of the eating disorder services spotted some of the signs. But it’s really not something I should hide away because the truth is, knowing I have autism has been such an important part of my recovery from Anorexia Nervosa. During my outpatient treatment, I was given a therapist who specialised in both autism and eating disorders. He really helped me to learn how to cope in a world that I struggled to understand and helped me to explore the links between my autism and the eating disorder.
Those links included sensory difficulties. I have always hated loud noises and bright lights and, when I am surrounded by these two things, I experience sensory overload. This means that certain textures of foods are intolerable for me at certain times, but others I can cope with. I have found that certain environments can really help to lessen the effects of sensory overload.
I originally discovered this with my therapist Dan. We went for lunch one day during therapy, and I suggested going to a cafe at the university I was soon to be attending. As soon as I walked in, I was hit by a sea of people in the room, the bright lights too painful I just wanted to close my eyes, and the echoing noises all around. I started to feel a change in myself. It’s as if my brain goes into overload and decides to power off. I couldn’t concentrate. I could see dan trying to talk to me, but I had no idea what he was saying. I knew I had to choose something, but I’d lost all ability to think. So there I was, unable to make a decision and looking at Dan, most likely with fear and panic written all over my face, for some guidance and support. In the end, I just picked something, paid, and then Dan asked where I wanted to sit. But instead of remaining in the cafe, I asked if we could go outside and eat on the wooden bench with the view of the lake, a fountain and some trees. And when we were there, even Dan said it was like I was a different person. I became so much more relaxed, I was calmed by the gentle breeze tickling my face, the peaceful sound of birds in the trees and the water shimmering all around. I felt so calm, so at peace, that the eating disorder couldn’t touch me. I was able to sit, chat to Dan and eat my lunch without being tormented by the thoughts in my mind.
That’s how much of a difference the environment can make to me. It seems simple, but it makes such a huge difference. And it’s these things that I have learnt along the way that have not only allowed me to accept my difficulties, but have also enabled me to flourish.
Exploring the challenges that I face because of autism helped me to understand what was fuelling my eating disorder. Once I started learning how to cope with autism, I saw that my eating disorder became weaker. I no longer needed it to cope, because I had other, more reliable and more effective ways of coping.
I guess the one thing I do still struggle with is the fact that I don’t seem or look ‘autistic’. What that quite means, I’m unsure. But we still live in a world where people find it difficult to accept things they cannot see. And they often paint a picture in their heads of what someone with autism, or eating disorders for that matter, should look like. And because of that, I don’t often disclose that I have autism. But the only way people will move away from these stereotypes is by challenging them. So that’s why I have written this blog today. To raise awareness.
Some of my coping mechanisms are quite subtle, so here’s an insight into some of the things I do to cope:
I often wear a cap because I feel ‘safer’ with something weighted on my head, but my hats have kind of become something that I’m known for. People accept it – it’s just me. I often wear earplugs or headphones without listening to music. Again, something that is accepted. I don’t make eye contact, but I have to look at people so I can lip-read. When I am speaking to someone in a busy environment, it’s as if I collect a word from each conversation around me and form a sentence from those words. So instead, by reading peoples’ lips, I can kind of focus more on that specific conversation. That’s something nobody would notice unless I told them.
And I suppose that leads me onto my final point. Remember that not every struggle is visible. Let’s all be that little bit kinder to people, because you don’t know what they really encounter on an everyday basis. Of course I encourage those who are struggling to speak out and ask for support, but for those who are quick to judge: remember that people may be battling things you just aren’t aware of.
Onwards and upwards,
Rose Anne x