This collection of reflections has been written by volunteers at EmpowerED. As part of our Experts by Experience forum, we explored a vital question:

“What do you wish you’d known, or what professionals could have done differently, if neurodiversity had been recognised at the beginning of treatment for an eating disorder?”

Each of the following pieces was written by someone with lived experience of both neurodiversity and an eating disorder. Their voices speak to the challenges, misunderstandings, and gaps in care that can arise when neurodiversity goes unrecognised but also to the power of self-understanding, and the potential for recovery when care is adapted with neurodiversity in mind. These stories are shared unedited, as they were written with honesty, vulnerability, and strength.

Key Themes Emerging from Lived Experiences

1. Missed or Delayed Diagnosis

All authors reflect on how their neurodiversity went unrecognised during initial ED treatment. They describe how key traits (e.g., sensory sensitivities, difficulty with change, emotional processing challenges) were misunderstood or dismissed as symptoms of the eating disorder itself.

2. Therapy Misalignment and Communication Barriers

Standard approaches to therapy (particularly CBT) often fail to meet their needs. Authors describe being seen as “uncooperative” or “resistant” when they were struggling to engage and benefit from therapy that didn’t align with how they process emotions or communicate.

3. Eating Disorders as a Coping Mechanism

The ED became a way to impose order, reduce sensory input, and manage the unpredictability of social interaction and emotions. The need for structure and control was often a coping strategy.

4. The Power of Understanding and Self-Compassion

Gaining knowledge and receiving a formal diagnosis provided clarity, self-understanding, and permission to seek support in different ways. With this new knowledge, the contributors describe making progress by incorporating more individualised strategies to recovery.

Thank you for taking the time to read these reflections.

They highlight that when autism is not recognised, treatment can feel overwhelming, isolating, or even impossible. But with understanding, flexibility, and the right support, recovery becomes more accessible.

We hope these voices prompt reflection, encourage conversations, and inspire change.