Developing a double mask; when autism and anorexia collide

I first presented this talk at The Autism Show (NEC, Birmingham) in June 2023. In this article, I’ll be sharing a snapshot of my lived experience around how I developed a “double mask.” I’ll be focusing on the relationship between autism, anorexia and masking, with references to bullying and identity. 

Growing up

I grew up unaware that I’m autistic. A fact I discovered at the age of 26. Yet whilst unaware of the why and how my mind works differently, I was acutely aware of my difference. I stumbled my way through school, gathering a collection of negative labels and experiences of bullying. I began to see my differences as flaws, these words becoming attached to my identity. Without any explanation, I assumed that there was something wrong with me. 

So at a young age, I subconsciously concluded that I needed to change, and that’s exactly what I did. Along the way, I lost my sense of self, becoming more and more detached from the things that brought me joy. 

I developed a whole range of strategies as a way of hiding my differences, I was masking my autistic self. It was partly driven by my desire to belong, to fit in and blend. But it was partly a form of self-protection, a way of escaping bullying and discrimination, and a whole heap of emotions that made very little sense.  

My mind became a hive of activity, rehearsing scripts and replaying conversations. A chaotic ball of energy swirled frantically inside, as I kept myself still to the outside world. I felt confined by unnatural ways of being and moving.  

Developing a double mask

As I made the transition from primary school to secondary school, I couldn’t keep up with the level of masking required. It didn’t matter how hard I tried, I couldn’t escape the sense of difference. I lived life on the outside, looking in. Confused and overwhelmed.  

By this point, masking was also beginning to take its toll on my mental health. Exhaustion, high levels of anxiety and extremely low self-esteem combined to create the perfect storm for anorexia to take hold.

And when it did, it changed me to the point I was unrecognisable. Not just physically, it distorted all aspects of who I was. Anorexia became the second layer of my mask, overshadowing the differences at my core. And I believe it is this double-layered mask that contributed significantly to my late autism diagnosis. For a long time, we saw anorexia, not autism.

The biggest question

I was fortunate though, eventually autism was suggested by clinicians. But it’s been a bumpy road from that point to now. 

Part of that road since receiving my autism diagnosis has been understanding that I mask, and then when, where and how I do. As I began to understand the extent to which I had been masking and unpicking the layers, I was left with the biggest question – who am I?

And when that huge question hit me, I felt like a young plant emerging through soil, in the middle of a turbulent storm. I was being flung around in all directions, blustery winds of emotions thrashing at me. I was disoriented and lost. 

Opportunity for change

It took time and weathering the storm, but making sense of my “double mask” was another opportunity for change within my recovery from anorexia.

This started with gently challenging the pile of internalised “shoulds.” I explored what matters to me and how I would like to live my life. I began to understand when and where it felt safe to unmask. And I still mask in some situations, because we live in a world lacking in consistent understanding and acceptance of autism. Unmasking isn’t a process we go through in isolation. 

The difference now is that masking has a far lower impact on my mental and physical wellbeing. I have greater knowledge and understanding of my autistic experiences of masking, and I have strategies in place to recharge when it is required.

My confidence grows through the increasing amounts of my life where I can unmask. Where I don’t feel the need to conform to non-autistic norms and expectations. Where I’m truly me. It’s freeing. It’s empowering. And it’s joyful.

To conclude

Anorexia thrived on maintaining my “double mask,” with all the isolation and low self-esteem. So, I focused my attention on nurturing a positive autistic identity and unpicking the layers. One step at a time. In therapy, my own self-development, connecting with other autistic/ neurodivergent people, and by seeking out opportunities and environments where it felt safe to be me. Until one day, I knew, I didn’t need anorexia to hide me away. 

I am me, and I am okay. And I’m not afraid to be seen.

Please do explore my website. You can read my other articles, listen to me talk about my mission and get in touch with me using my contact page.