Unmasking my autism

As a late-realised autistic woman, one of the biggest hurdles I faced was coming to terms with the concept of autistic masking.

I grappled with the question of how to authentically express myself in a world that often demands conformity, and, honestly, unmasking is still very much an ongoing process for me.

For years, I had unknowingly camouflaged my true self to fit societal norms and expectations. I presented as capable, confident, and self-assured - a mask forged from both survival and necessity. Underneath, I was exhausted. I didn’t know I was autistic, only that I often felt like an outsider. I used to believe I was just weird, or worse, broken.

My mask became so fixed that I lost sight of who I really was. I didn’t realise how much I was suffering, because I had trained myself not to look. Like many late-discovered autistic women, I was socialised to believe that my needs were inconvenient. Rest felt like weakness. Asking for help felt like failure.

The truth is, on a daily basis I live with chronic pain, mobility issues, gastrointestinal problems, and chronic fatigue. For years I didn’t share this with anyone. Not because I was hiding, but because I had stopped trusting my own experience. I’d learned that to speak about pain would mean being dismissed or disbelieved. That belief ran so deep, I didn’t even consider seeking medical help; I didn’t think I was allowed to.

This is something I want more healthcare professionals to understand. Autistic people are not just ‘quirky’, many of us live in chronic distress, both physical and emotional. We are often taught from a young age that our movements, sensitivities, and ways of communicating are wrong. Even without overt trauma, growing up as an undiagnosed autistic person in a world not built for you can be traumatising*.

I was diagnosed with epilepsy at thirteen. Around 12% of autistic people also have epilepsy** - a significantly higher rate than the general population.  And yet no one ever joined the dots. If healthcare professionals were more aware of common co-occurring conditions, I wonder if my autism might have been recognised earlier? Before the burnout, before the complete disconnection from myself.

Through therapy, I’ve begun learning how to prioritise self-care, set boundaries, and advocate for my needs. These aren’t easy skills to learn when your whole life has been shaped around pleasing others and hiding your struggle. Nearly three years on from discovering I’m autistic, I’m still getting to know myself. Sometimes it feels like I’m meeting parts of me that were buried for decades.

If I had been diagnosed in childhood, I often wonder if my health might not have declined so rapidly. I’ll never know for sure. But what I do know is this: I am not broken - I am autistic.

I am a whole human being who spent far too long trying to be palatable to a world that misunderstood me.

I want to encourage other neurodivergent people to seek support, even if you’re unsure what help looks like yet. With the current demands on clinicians and the long waiting lists many of us face, I also want to say this gently but clearly: self-realisation is valid. You do not need a formal diagnosis to honour your experience or begin taking care of your needs

I want to call on healthcare professionals to widen their lens and to learn how autism really shows up in adults, in women, in those who’ve survived by becoming who others needed or demanded them to be.

As we continue to advocate for greater understanding of neurodiversity, let us also reaffirm the importance of self-care, therapy, and community support in navigating the complexities of late diagnosis or realisation.

Together, we can unravel the layers of masking, reclaim the selves we were taught to hide, and create a more compassionate and inclusive world for us all.

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References:

*Krakowiecki, R. et al. (2021). Trauma and autism: An overview of theoretical perspectives and neurobiological insights. Journal of Autism and Developmental Disorders.

**Besag, F.M.C. (2018). Epilepsy in patients with autism: links, risks, and treatment challenges. Neuropsychiatric Disease and Treatment.