Anorexia and Autism: 5 Lessons Learned on the Road to Recovery

What can we learn from lived experience? In this powerful extract from Supporting Autistic People with Eating Disorders by Kate Tchanturia, mental health specialist Dr Pooky Knightsmith shares five key lessons she discovered during her own recovery from anorexia nervosa as an autistic person. As we mark Eating Disorder Awareness Week, we hope her insights offer valuable guidance for anyone supporting an autistic individual on their recovery journey.

“I have a long history of anorexia and I have spent years walking through a constantly revolving door of illness and recovery. I was hospitalized in 2017 and at first I got rapidly more unwell until I was given a diagnosis of autism and my treatment was radically revised. Here are some of the lessons I’ve learned ( or am learning) now that things are finally beginning to settle …

Lesson 1- I’m more than a label, but a label helps
Being labelled as autistic led to an overnight overhaul of my treatment and I went from getting rapidly more unwell to being given the right support to take positive steps in my treatment. The label gave my treatment team permission to revise the way they treated me and to realize that sometimes we had to turn the typical approach on its head in order to make progress with me. The label also helped me to begin to understand myself and helped me to make sense of a lot of the difficulties I’ve faced day to day my whole life. Being able to view myself through this new lens was incredibly helpful and allowed me to be a little kinder to myself and to begin to rethink my approach to many things. The label also gave me a community I could identify with and an avenue into learning how best to support myself day to day as there is quite a lot of advice out there that I’d never thought of applying to myself.

Lesson 2 – Traditional treatment can do more harm than good
For example, before diagnosis I was being forced to engage with a wide range of food types; after diagnosis I was allowed to be very selective at first and create a plan with my treatment team for very slowly increasing my range. This has taken an incredibly long time and, having been a healthy weight for more than 18 months, I am still slowly introducing food groups, but this very slow and stepped approach has enabled me to make consistent progress. The traditional approach resulted in me completely shutting down, disengaging and rapidly losing weight even when in treatment.

Another example is that the ward I was on relied heavily on group therapy. For me this was actively harmful. Working as part of a group is very complicated for me even when I’m in good health and I was entirely unable to engage with the content and would sit mute, but highly distressed. Following my diagnosis I was withdrawn from group therapy and given entirely one-to-one support which allowed me to engage with the same content ( which was largely skills based/ dialectical behaviour therapy (DBT))1 in a way that was helpful rather than harmful.

Lesson 3 – Little things can make a big difference
Once I became a little more confident in my new label and had gained more understanding about which parts of my daily experience were likely linked to my autism, I found I was able to ask for adaptations to be made which seemed minor but which made a big difference. For example, the room in which I had therapy had a clock in it. For the first few sessions I was considered not to be engaging in the sessions but the truth was that I couldn’t focus on anything other than the sound of the clock. Once I understood that this was simply because I’m very sensitive to sensory stimuli and it was reasonable to ask for the clock to be removed, things got quickly better. Other minor adjustments that made big differences included:

• Timekeeping wasn’t always good on my ward. I found it very hard if things didn’t happen when I was told they would, so this was addressed.
• Minor substitutions would be routinely made in meals – for me this would mean I wasn’t presented with what I was expecting and couldn’t eat it at all so efforts were made to avoid substitutions and to warn me ahead if they were made.
• I was allowed to wear headphones with calming music whenever I wanted to drown out background noise.

Lesson 4 – The combination of autism and starvation is like autism on steroids
When my brain was very starved, the symptoms of my autism went into overdrive. When I am healthier I am very high functioning and able to largely mask my symptoms (hence not getting a diagnosis until my 30s, I guess) but when I was very underweight, I presented far more typically and didn’t have the ability to mask and manage. This meant that weight gain was arguably even more important for me than for many of my peers because it became hugely important to break the cycle as every day my world was shrinking and my anxiety and distress was increasing.

This meant that any way we could find of me taking on calories was fair game. At first I lived off a single flavour of Ensure and the introduction to solid food was far slower than usual treatment pathways would have recommended; but we did whatever we could to halt the weight loss and help me to re-feed my body and brain.

Lesson 5 – Adjustment to life outside the unit required significant support
The great things about life on the ward were that there was a very rigid routine and very carefully planned meals and everything was made very predictable. This was great and hugely supported my progress whilst I was there and was an ideal fit with my autistic traits, but it meant that the transition back to the real world needed very careful management. We tried to take what had worked well on the unit (planned meals, fixed timings etc.) and replicate this at home. We did find though that I was very motivated to eat well and function well with my children, so we built this into my treatment plan and whilst I was on the intensive day patient programme at the Bethlem Royal Hospital I was allowed to eat breakfast and dinner at home with my family whenever I felt able to do so. When I wasn’t able to do this I could eat at the unit – having the safety net in place allowed me to be braver in my steps to recovery; but everything had to be carefully planned and well supported.

Lesson 6 – I’ve had to adjust my expectations of recovery
I always thought that when I got better I’d suddenly fit – that I’d enjoy all the things my friends enjoy and I’d become some sort of social butterfly and find life much easier than I had in the past. I’ve had to realize that this is not the case and that recovery looks a little different than I thought it might and that being and staying well will always be an active process for me.

Lesson 7- I have to work hard to stay well, being honest with those around me helps
Now that I understand more about myself in the context of my autism diagnosis, I can trace back many of my historic relapses and realize that autistic burnout was a recurring theme. Now, I am much more careful to be aware of my day-to-day needs and to build in adequate down time and time for self-care to help me reset. I’ve revised my working patterns and also how, when and with whom I socialize. I’m also aware of flashpoints, like the school holidays when routines change and I get less time alone. As a family weve made adjustments to help me manage and I’m also much better now at realizing that to stay well I must step back sometimes. I’ve also worked hard to re-educate those I work with and my friends too. Having masked my autism so well for so long, people can sometimes be dismissive, which is hard, but when I take time to truly explain, I find that on the whole people are supportive and will make the accommodations that might feel small to them but feel huge for me – that might mean if I’m speaking at a conference that I’m not expected to network at lunchtime but am given a room to take time out; or if I’m meeting with a friend that I meet one-to-one instead of in a group and that we meet somewhere quiet rather than in a busy bar. There are a whole host of little things – but added together they make a big difference to me and I think will mean me finally being able to stay well instead of constantly nose-diving back into anorexia.”

References

1. Dialectical behaviour therapy (DBT) is a talking therapy that aims to support people to understand and accept difficult feelings, learn skills to manage the feelings and be able to make positive changes in their lives (Linehan, 1998).

2. Linehan, M.M. (1998) ‘An illustration of dialectical behavior therapy: In Session: Psychotherapy in Practice, 4(2), 21-44.

Find out more about Supporting Autistic People with Eating Disorders here.