My name is Laura, I'm 27 and from Cardiff. I took part in Autistica's study looking at anorexia in autistic women. I hope that by sharing my experiences, I can help improve services for others who struggle with controlling food and exercise.
I first heard about this study on Twitter and was keen to be involved as I met all the criteria and felt it would be an important study. Over the years that I struggled with anorexia I had some bad experiences of services but also some really good ones. I’m just one person but bringing a variety of experiences together could really change the way that anorexia services are designed for autistic women.
Sharing my experiences
I met face to face with one of the researchers and completed two short questionnaires followed by an hour long interview. I was asked about my experience of autism, my struggles with anorexia and the diagnosis process of both conditions. Like many women I got my diagnosis of atypical anorexia before anyone identified me as autistic.
They were keen to hear my opinions too. They wanted to know why I thought anorexia was different for autistic people. I explained that from personal experience, it was more about control than a fear of weight gain. I became obsessed with small set meals at set times. I always enjoyed eating. I suppose that was why I was in denial for such a long time. I had no aspirations to be model thin, I just made food and exercise my ‘special interest’ and became obsessed.
It felt good to share my experiences and opinions for such a worthwhile project. I was listened to and made to feel I mattered. I was relieved to know that this research is finally happening – it gives me hope for the future. The researcher fitted the interview in around my work schedule, covered my expenses and gave me payment for my time. She was so friendly and made me feel at ease – offering me breaks throughout the interview. She also offered the chance to email answers after the interview if anything came to mind later – sometimes I struggle to process questions and come up with an answer on the spot. It’s these little things that make a real difference.
Hopes for the future
I hope that as a result of this study there will be a better understanding of how autism & anorexia interact in women. I would like to see services become more tailored. For me, it really could have helped if my treatment supported me to challenge rules, rituals and routines not just focus on weight gain.
Recently there has been an increased focus on autism and women so this research could have a big impact. I hope that increased understanding could see us diagnosed earlier - before issues like anorexia, anxiety, depression and OCD take hold.
Valuing autistic people in research
It’s so important to include autistic people in research and I hope that other organisations follow Autistica’s lead. It feels like we are collaborating with researchers - that feels so much better than being studied. We are all working together for better lives for autistic people.