Fi, 26, has built a large social media following talking about her experiences as a late-diagnosed autistic woman recovering from anorexia. When she’s not building her social media community, she works for PEACE Pathway, which uses evidence-based methods to improve outcomes for autistic people with eating disorders.

We caught up with her to discuss her experiences, and why research is essential to improving outcomes for autistic people with eating disorders.

Could you introduce yourself, and tell us how you are creating change for autistic people struggling with anorexia?

Hi, I'm Fiona, or Fi, as most people know me on my social media. I'm autistic and I'm in recovery from anorexia.

I speak about my experiences, past and present on social media and through my work with the PEACE Pathway. I talk about what it's like being a later diagnosed autistic woman, and how that has interacted with my mental health and my eating disorder recovery journey.

Could you tell us about the kind of content you make on social media and how you started doing this?

Being on social media is something I accidentally fell into. A couple of years ago I had a horrible relapse. I was in hospital in a room by myself for pretty much 23 hours a day.

I was trying to get my physical health into a stable place so that I could go home. I followed quite a few people online, who I found inspiring. My best friends came to visit and said, “Why don't you make an account and start creating some videos?” I started making videos and I got quite a few followers quite quickly.

It helped me feel like I was connected to the world. It was isolating being in alone in a room for that many hours a day. It also gave me accountability for making progress in my recovery. People were so kind and supportive. It helped me out of a dark place.

At that time, I got my autism diagnosis after being on the waiting list for a long time. I started talking about being autistic, and then people were messaging me saying that it was helping them.

Could you tell us what Peace Pathway does and how it is making a difference to autistic people who have eating disorders?

So, PEACE stands for Pathways for People with Eating Disorders and Autism Developed Through Clinical Experience. It is an autism-friendly treatment pathway that raises awareness of the high degree of overlap in autism and eating disorders. It advocates for reasonable adjustments to be made to eating disorder treatment for autistic individuals to make it more accessible and improve outcomes.

My role is that of an expert by experience, which involves a whole host of things. I've helped develop therapeutic interventions, I've spoken at conferences about my experiences, I review the current treatment practices and offer how they might be made more autism-friendly, and I answer questions from clinicians.I'm also involved in the data and research side of things. Part of any good practice is to keep asking questions and to keep learning.

How does your personal experience help you excel in your role?

There's been an awful lot of pain in my journey, and it felt like a very confusing decade of my life where I was in treatment and I didn't have my autism diagnosis. Using my experience puts some meaning to those experiences. I hope that I'm able to help improve things for other people who might be in a similar situation. And to help improve the way services are run so that they're more autism friendly.

Could you briefly talk about the connection between anorexia and autism and why it’s so important to know more about this?

Autism is hugely overrepresented in those with eating disorders. Initially, people think about the fact that a lot of people who have eating disorders are autistic. But I always flip that on its head and question, “Why do so many autistic people develop eating disorders?” And you can think about the negative impact of masking, not being diagnosed, not fitting in, bullying, trauma, feeling isolated, not understanding social situations, feeling ostracised, and sensory differences. There are so many factors that can impact an autistic person's mental health, and for some people they develop eating disorders. It's important to know about this because it is so prevalent.

There's a quote that I absolutely love: “Autistic people are the ultimate square pegs and the problem with pounding a square peg into a round hole is that it's not that hammering is hard work. It's that you're destroying the peg.”

I think it's so true in society, daily life and in eating disorder treatment. If we try to put someone who is autistic on a neurotypical treatment path, we're going to be hurting that individual, or they're going to end up not getting the adaptations that they need. For me, not having those adaptations was damaging. That's why research is important, because we can learn about what works and what doesn’t, so we can improve things.

What would you say to an autistic person struggling with an eating disorder?

I would say you're not alone, that things can get better and there's nothing wrong with you. I think being failed by the system, which was my experience, doesn't mean that you're the problem.

Practically speaking, I'd highly recommend looking at the PEACE Pathway website. They've got some fantastic resources about autism and eating disorders, for the person struggling, their parents, carers, or clinicians. There are also several great books. There's one by Professor Tchanturia about autism and eating disorders, which is fantastic.

Thank you to Fi for taking part in Changemakers. You can follow Fi on Instagram @finding_fi_. Visit the PEACE Pathway website to learn more about its work in eating disorders in autistic people.