How being autistic aided my anorexia recovery

I have been struggling with disordered thoughts and feelings around food since the age of 8 and struggled with anorexia since I was 14. I first entered mental health services just before my 18th birthday. I was seen quickly but discharged after a few weeks to go to university in a different city.

I proceeded to spend the next 7 years ill with anorexia but no specific help or treatment for it due to a different incorrect diagnosis that I had, as well as my weight not being deemed “low enough”.

I tried my hardest to read books on how to help myself and online information to how to recover from anorexia but each time I gained weight, I was unable to maintain this for long. My weight continued to go up and down for years. My eating disorder behaviours continued to get worse but also changed. I spent many years going in and out of hospital for mental health crisis.

It was during my last admission that I suspected that I was autistic but I was too afraid to tell anyone initially. I relapsed with anorexia at the end of 2019 and spent the next year or so recovering from that after having reached rock bottom.

At this stage, I was allowed to speak with an eating disorder dietician once a week on the phone. She saved my life. She was amazing and for the first time in my life I had access to someone who was specialised in anorexia recovery. She created a meal plan for me. She allowed me to eat foods which were nutritious but also which I was able to tolerate on a sensory level. She believed me when I said I had never eaten certain foods in my life before due to the texture. So she worked with me and gave me alternative options. She taught me how different types of food allow the body to function and it was here that I learnt to stop focusing on the calories and instead focus on what the food allows me to do. Once I realised how much easier it was for my body to function, I stopped focusing on calories over time.

I was for the first time in my life eating food and appreciating what it allowed me to do. It allowed me to be present. It allowed me to walk again. It allowed me to engage in my hobbies and interests again. It gave me my personality back. After a year of speaking to the dietician once a week on the phone, I was discharged.

I am now 30 years old and have managed to maintain a healthy weight and eat a nutritious and balanced diet for the past 4 years. This is the first time in my life that I have managed to do this. I never think about calories anymore nor engage in disordered eating behaviours. I have time to think about other things other than food and my weight and spend my time engaging in my hobbies. I admit that for me personally the anorexia voice in my head has never fully gone away - it is still there at the back of my head but it is now so quiet I can hardly hear it. I never thought in my life I would get to the stage I am at today where no longer does anorexia rule my every hour. I never thought it would be possible for my life not to be dictated by food and numbers.

I had a new psychiatrist in 2021 and he realised I was autistic within 5 minutes of meeting me. I had my autism assessment 6 months later and was finally correctly diagnosed as autistic at age 27 after a decade being misdiagnosed in the mental health system. I realised at this point why and how I had managed to maintain a period of recovery from anorexia which I had not managed before.

Although of course having access to an eating disorder dietician helped a lot, it was also because how she worked with me. I have always struggled my entire life with certain food textures due to my autism. But when working with this dietician, I was allowed to choose foods that met the nutritional requirements I needed but also were foods that I could tolerate the texture of. I was given a meal plan and as an autistic person who loves plans and predictability and sameness, this helped me as it reduced the anxiety of not knowing what I was going to eat and when. I could plan it out in advance and followed it because that is how my brain works best - when it has structure and routine. It also helped because as an autistic person I abide strictly by rules. So when I was told to eat my meal plan, I did exactly that as it became a rule in my head. I was grateful that my dietician was not strict about me weighing myself regularly and instead focusing on what my body allowed me to do now that it had adequate food. For me, being weighed has always been my biggest trigger as my brain latches onto numbers easily so not weighing myself regularly helped me to continue my recovery. I learnt with time not to be as affected by the numbers on the scale when I did weigh myself.

Although at the time the dietician did not know about my autism as it had not yet been diagnosed, she worked with me in a way which accommodated my autistic needs. I do believe this has been the key to me being able to maintain recovery. I think it is really important that reasonable adjustments need to be made in anorexia treatment for those who are autistic. When treatment is adjusted, the autistic person has more chance of recovering as some of their behaviours around food may be impacted by their autism such as sensory issues around food, food presentation and routines that they have because of their autism, not because of their anorexia. I do believe that routines can be beneficial for those on the spectrum who are recovering from anorexia, rather than a behaviour that needs to be broken.

I want to give hope to others that although the anorexic voice has never disappeared fully, it is possible to get to a stage where you are not constantly thinking about food and in a vicious cycle of weight loss and weight gain. I also want to raise awareness of the importance of acknowledging how autism can actually be a positive when it comes to anorexia recovery if treatment is adjusted for those on the spectrum.

Anonymous

If this blog resonates with you, take a look at our information on autism and eating disorders here: Eating Disorders and Autism