An Autistic journey of Anorexia recovery
In recognition of Eating Disorder Awareness Week 2025, Molly Anderton, NdC Lived Experience Advisor and Development Lead, shares a deeply personal account of how her experience of being a late diagnosed Autistic adult has impacted and informed her recovery from Anorexia.
For many Autistic people, including myself, the idea of change and uncertainty is incredibly scary and overwhelming. We often feel comforted and safe when our life feels familiar and predictable, even if this may seem boring to others. It’s why so many Autistic people rely on routine and planning ahead, but is also unfortunately one of many predisposing traits and experiences that make us 3 times more likely to develop Anorexia Nervosa. It also starts to explain why it may take Autistic people longer to recover, and why so many of us experience poorer treatment outcomes compared to neurotypical peers.
Eating Disorders such as Anorexia always serve a purpose for an individual. Contrary to common misconceptions, they are never just about weight, shape or appearance and there is rarely a singular cause or trigger. Emotional regulation difficulties and alexithymia, unprocessed trauma, an overwhelming fear of ‘growing up’ and the uncertainty associated with the future all contributed to me becoming very unwell, very quickly as a teenager. A subconscious and, initially, unintentional decision to eat less and exercise more spiralled rapidly when my pattern-seeking Autistic brain began to associate these behaviours with the number on the scale steadily decreasing. This in turn filled me with a sense of achievement in taking up less space in a world that felt threatening and scary.
The less I ate and the smaller the number on the scale, the more control and power Anorexia had over me. Rules quickly began to form, dictating everything from the amount of calories I was allowed to consume, to who was ‘allowed’ to see me eat and which clothes I could and couldn’t wear. As a strict rule-follower, there was no possibility of deviating from these rules without drowning in guilt. These rules simultaneously broke me and offered a sense of predictability and familiarity which left me clinging on to Anorexia for years, despite the potentially deadly consequences. It served the purpose of creating strict routine and rules for life which I could follow, unlike the unwritten manual for life that it felt everyone else could consult and abide by, except me.
In many cases, the interactions with services who were supposed to help, caused more trauma.
Having an eating disorder is so all-consuming and isolating that it can feel as though you are living in a bubble of both protection and destruction with only ‘it’ for company. For me, it felt as though the unbearably fast-paced nature of living in a world built for neurotypical people suddenly slowed to a halt with the fear of the future no longer consuming me, as my entire being now focussed on numbers, rules and striving for feeling in control.
When the 14 year old version of myself became unwell, I had no idea that I was Autistic. This meant that I didn’t know why I felt so incredibly outcast and different to everyone else in my life. I didn’t understand why the future terrified me so much or why I hadn’t begun to process the trauma associated with my parents separating at 5 years old until 8 years later. I was therefore unable to communicate my experiences with those around me and, when I met with mental health professionals, I couldn’t articulate that the more obvious triggers of a recent bereavement and financial stress at home were not the ‘reasons’ why I needed Anorexia to cope.
The experience of feeling misunderstood by those around me, which triggered so much emotional pain for me as a child, was then replicated as a teenager and adult by mental health services incorrectly labelling me with an array of psychiatric disorders to try and explain my experience of the world around me. My need for accuracy in medical notes and consistency with professionals was pathologised as ‘relational instability’ and being a ‘difficult and demanding patient’. Being told I was ‘not sick enough’ and then ‘too complex’ to receive treatment fuelled my black and white thinking and led to years of striving to be seen as ‘enough’. I was made to believe that I needed to make myself more physically unwell to represent the degree of psychological pain I felt.
I have spent almost 9 years being passed from one mental health or eating disorder service to another, feeling that my recovery is a lost cause because I have ‘tried everything’. In many cases, the interactions with services who were supposed to help, caused more trauma. Being diagnosed Autistic in December 2023 was the beginning of me being able to put down the stigmatising and dehumanising opinions I have been made to form of myself during this time. I am not ‘failing at recovery’ because I am not yet recovered: I recognise that it has taken me this long to start to fully understand myself and my world. It was not me who was the problem when ‘gold standard’ treatments did not ‘work’: it was the fact that they were aligned to neurotypical needs and goals for recovery. I am not non-compliant or ‘disengaged’: I need longer to build relationships in which I feel safe enough to be vulnerable, because being vulnerable can lead to shutdowns which are frightening to experience. The small things like dimming the lights, sitting in the same room and allowing written communication or moving my head rather than forcing me to interact verbally can all have a huge impact. With the support of a consistent therapist, I am now finally able to fully engage in treatment.
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