Ella's story - Eating Disorders & Neurodivergence: When the Missing Puzzle Piece Arrives Years Late

For a long time, I believed something was fundamentally wrong with me, not just the eating disorder, but the way I responded to treatment, the intensity of my reactions, the exhaustion of trying to “comply” with systems that seemed impossible.

I learned lately that more has been going on; I am not untreatable. I have simply been missing crucial puzzle pieces, ones I could only have hoped for seven years ago.

Hindsight is a wonderful yet dangerous thing. It shows you what could have been different, what should have been considered, while those in my care turned a blind eye.

Truthfully, I feel frustrated and upset that the long-standing suspicions of autism were never explored, frustrated that overlapping issues were dismissed as “just anorexia”, frustrated that the complexity was visible to so many people, yet never acted upon. It can feel hard to advocate for yourself or understand what is going on for any child.

Why It Felt So Intensely Hard

I know now why everything has felt acutely intense, why I have “overreacted”, “resisted”, or shut down so much. It was never because I didn’t want to get better, which is what I was told as a teenager. There was something else lurking in the dark, something that shaped how I think, feel, sense, and interpret the world around me, and in me.

I see a complex formulation now. I can finally see all the contributing factors for all they are. And maybe this time, approaching them with new knowledge and understanding, will give me a much better chance.

The Overlap No One Talked About

One of the most validating discoveries has been understanding interoception with my therapist, which is the internal sense that tells us what’s happening inside our bodies.

Anorexia already heightens awareness of food in the stomach, fullness, discomfort, and bodily sensations. Autism can heighten interoception, too.

Put together, it’s not just difficult, it’s doubly difficult.

The Emotion You Can Name When You Can’t Name Any Others

The way “feeling fat” becomes a placeholder for emotions that are hard to identify. A clinician once told me that people often default to “fat” because it’s something they know how to “fix”. We discussed that it’s also easier than identifying emotions when naming them feels confusing or impossible with alexithymia, common in autism and exacerbated by anorexia.

The emotion wheel had become a lifeline for me in the hospital; it gives language to the internal chaos.

Looking back, I can see how relentlessly the weight narrative was pushed onto me. It became the only language anyone used with me, the only metric of “progress”, the only thing I was asked to focus on.

Over time, I think I almost came to believe I was supposed to fear weight more than anything else, so I did. Not because the fear was innate, but because it was reinforced and repeated until it felt like the only acceptable emotion.

In my children's eating disorder unit, I was told, “Don’t worry, we aren’t going to make you fat”. It was almost ingrained in me, a fear that was never mine to begin with.

Every distress signal I tried to send was interpreted through the lens of weight. Every shutdown, every panic, every sensory overload was flattened into one explanation: anorexia nervosa.

The Cost of a Missed Diagnosis

Years of waiting for an autism assessment, years of knowing something didn’t add up, years of being told as a child with anorexia that I “didn’t need any more labels”.

Years of clinicians, family, and school suspecting it long before my eating disorder ever established itself.

Years of hearing the possibility floating in the air through numerous hospital admissions, with doctors towering over me.

And yet nothing happened.

It has caused me grief I can’t fully articulate. Trying to navigate treatment without the right framework is like trying to read a map in a language you don’t speak.

I relapsed again and had another admission to an eating disorder unit. I was discharged one random Monday after seven months (with no provisions in place) because I “wasn’t making progress”. But I know why now.

All my intake at this stage was provided by enteral nutrition, and I had been sectioned due to a lack of capacity. Looking back, the following discussion hurt me more than I realised. A dietitian asked me to agree to a target BMI. I had been there only a few days, and I was extremely unwell and chose an unhealthy one. She agreed, albeit hesitantly. So I took it literally. For seven months, I believed that was the goal, the finish line, the rule. Only once I reached it did she tell me it wasn’t okay.

In hindsight, both autistic traits and anorexia were at play. I really needed truthful, written communication (even if it were to upset my anorexia). I could not cope with the sudden changes I didn’t understand.

And something else became painfully clear: the people who spent the most time with me, the HCAs and nurses, were the ones who actually saw me. They saw my qualities, my patterns, my shutdowns, my literal thinking, my sensory distress, my kindness, my effort and creativity. They were the ones who understood me as a person and made me feel safe. Yet at the end of the day, it was the MDT who decided everything about my care. People who saw me for minutes, not hours. People who interpreted my behaviour through charts, not through lived interaction. That disconnect shaped so much of my experience.

Once I was discharged, I did well at keeping myself out of the hospital. But unfortunately, I relapsed. This time, seeking help, my team are more willing and open to discussing how autism has (and is) impacting my anorexia.

The Systemic Failures

NHS wait times for neurodevelopmental referrals are devastating. My ICB (Integrated Care Board) has now paused funding entirely. People whose eating disorders are intertwined with neurodivergence are left in limbo.

I just wish it hadn’t been shoved under the rug for seven years. Especially when anorexia already fractures your identity, I had a whole other misunderstood condition quietly shaping everything, dismissed as “not important right now”.

Maybe my treatment would have been different. Maybe I wouldn’t have been labelled “resistant”. Maybe I wouldn’t have internalised so much shame and fear at a young age.

Why I’m Writing This

I hope to advocate in the future for greater awareness of how eating disorders and neurodivergence coincide. I am so pleased to see my local eating disorders team recently creating a visual aid for their day patient programme, in an accessible format. I am so pleased to see research displayed in the waiting room, looking into the comorbidity.

It feels like, although there is a long way to go, more awareness and discussions are creeping onto the table.

With this new knowledge, I feel I can try to be more gentle with myself on the road to recovery, come at it with some compassion this time, and understanding of myself. I believe everyone can fully recover, and I am forever grateful for Beat’s continued support, which they have given my family and me.

I have hope, gratitude, and determination to rewrite this narrative.

If you’re reading this, please welcome any glimmer of hope that comes your way. Hold it tightly, and lean in to it. You deserve more, much more than anorexia could ever dream of offering.

Our theme for Eating Disorders Awareness Week 2027 is Neurodivergence & Eating Disorders. Find out more about what we're doing to spread awareness for this here: EDAW 2027