Unmasking my autism, part 2 – What I didn’t say the first time

The cost of being unheard

Trigger warning: This piece discusses masking, misdiagnosis, and suicide within the autistic community.

I published my first blog in this series, Unmasking My Autism, last week and it was a gentle introduction to autistic masking. I shared glimpses of my own journey as a late-realised autistic woman, including how long it took for me to understand what was really going on beneath the surface. I spoke about the hurdles I faced, feeling misunderstood in healthcare, therapy, and everyday relationships, and how masking became a survival tool. But after reading the feedback, I realised something important: people were missing the point.

I had made it soft. Palatable. Fluffy, even. And the truth is, fluffy will not do.

Like so many autistic people, I learned to play down my pain to make others comfortable, but nothing changes when we do that. So maybe this part of my unmasking journey is not just about stimming freely or being open about shutdowns and meltdowns. Maybe it is about finding my voice and actually using it.

Because the truth is not all autistic people can tell their stories, and that matters. I recognise that I am writing this from a place of privilege: I can express these things. I have the language. I have a platform. I also carry the weight of prejudice. Both can exist at once.

There are many autistic people who cannot speak or advocate for themselves in ways society recognises. People who rely entirely on others for support and whose needs are often invisible because their communication is different or misunderstood. What happens when the people supporting them are exhausted too?

I want to acknowledge the parents and carers, many of whom are burnt out. Not because of their children but because of the constant fight to have their child’s needs understood. They battle daily to access services, explain their reality, and secure the basic respect and care that neurotypical children are often given automatically, because autism is still widely misunderstood.

Despite growing awareness, there remains a huge gap between visibility and actual understanding. One of the most harmful myths is the idea that most autistic people are now simply ‘high-functioning’ - a label that has no clinical validity and tells us nothing about a person’s support needs or internal experience. This narrative erases those who cannot unmask, and it dismisses the suffering of those who do.

By not trusting my own voice, by constantly reshaping myself to meet neurotypical expectations, I spent years in distress. I lived with chronic illness, misdiagnosis, and mental health struggles that were never properly understood because they were not being viewed through the right lens.

I am not alone in that.

A 2016 study* found that autistic adults are nine times more likely to die by suicide than non-autistic adults. This is not just an unfortunate statistic, it is a devastating truth, and one we need to talk about however uncomfortable it may be.

In my last blog, I held back. I wanted to ease people in, and perhaps I was masking somewhat. But the truth is, masking, especially when unrecognised and unsupported is dangerous. It’s not just about fitting in; it’s about hiding distress so effectively that even the professionals meant to help us cannot see it. And then we are blamed for burning out.

As Devon Price writes**:

“The cost of masking is life itself. We are not exhausted for no reason. We are exhausted from existing in a world not built for us.”

That exhaustion shows up everywhere:

• In healthcare - where co-occurring conditions are missed or dismissed

• In mental health services - where autistic distress is mistaken for personality disorder

• In therapy - where the models are often rooted in neurotypical norms

• In education - where compliance is rewarded and masking is encouraged

Still when we name these things, the response is often to protect the system. We are told that services are underfunded. That people are overworked. That awareness is growing and we must be patient. But those explanations do not change the outcome for the person who is continually missed.

It is not difficult to start doing better.

Read a blog written by an autistic person. Take a short course. Have a conversation. Ask someone what they need. You do not have to be an expert. You just have to care enough to learn.

If you work in healthcare, education, or mental health, continued learning is part of your job. That includes learning about neurodivergence. It is not a specialism. It is part of knowing how to support human beings.

Un-masking is not just about someone dyeing their hair bright colours or putting on headphones. It is about realising you have spent your whole life changing how you sit, speak, dress, and express yourself.

Masking is not just speaking less bluntly or pretending to understand a joke; it is suppressing a meltdown because someone might call you aggressive; it is forcing yourself to make eye contact when every cell in your body says not to; it is being polite in the face of overwhelm; it is smiling when you feel like crumbling. It is trying to be acceptable even when it hurts.

When we mask, we are overlooked. Then when we unmask, we are often too much, too sensitive, too emotional, too direct, not autistic enough, or too autistic to be believed. We move between erasure and rejection. Always trying. Never quite fitting.

This is not about blame. It is about responsibility.

It is about inclusion, communication, and the willingness to learn.

We will never get it perfect. Humans are too complex. But we can do better.

I’ve got it wrong with my own clients of all neurotypes. I am a therapist and a human working with another human, and there will always be variables. I am not a robot, I make mistakes. But if I miss something, I ask, I listen, I learn. And I continue to learn. That is the work.

Because if we are not willing to learn from the people we support, then what are we doing?

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References

*Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), 232–

**Price, D. (2022). Unmasking Autism: Discovering the New Faces of Neurodiversity. Harmony Books.