What is unmasking? My neurodiversity unmasking journey

I really don’t like myself very much at the moment. 

Not in a self-loathing, woe-is-me, concerning kind of way; more in an autistic-burnout, coming-of-age kind of way. It almost feels like a second puberty, lol. 

I was diagnosed with ADHD yesterday. 

It’s no surprise - I mean, how can it be a surprise when I’ve actively taken steps to seek the diagnosis. I felt like my ADHD traits were seriously impacting my ability to function. I’ve long suspected I’ve got ADHD, and suspected autism for even longer. I was diagnosed with Borderline Personality Disorder at 18, but this never quite fit. It felt like it didn’t explain it all.  Learning about neurodiversity, and exploring other people’s lived experience, made me recognise signs in myself, and my own autistic and ADHD traits. 

It therefore shouldn’t be a surprise when two professionals, at each of my assessments, said I’m very clearly also autistic and they would encourage me to seek a diagnosis for that too. The psychiatrist at yesterday’s appointment, whilst acknowledging she is not an ASD assessor, said she thinks the majority of things I’m significantly struggling with are actually autistic traits and not so much the ADHD, although that is causing issues too. She also warned that starting to medicate the ADHD may give more space for the autistic traits to show more prominently. Super fun!

Not gonna lie, this makes me scared. The reason for the fear comes down to unmasking. 

What is unmasking?

To understand what unmasking means, you’ve first got to understand what masking is. 

Masking is something that a lot of neurodivergent folks, particularly neurodiverse women, do. Masking is basically learning how to follow the rules in society to hide your neurodiversity, and make just enough people think you’re not super weird; like you know what you’re doing; or, like you belong. We do this by hiding our more neurodiverse behaviours, such as not stimming, faking eye contact, or making sure that we’re listening to you and appropriately reacting at key points in the conversation so that you know that we’re listening, and being way too concerned about listening to actual listen to a word you’ve just said. That kinda thing!

Another common trait in ND people, when it comes to masking, is to mirror other people. We base our personality traits off the people we spend time around, mimicking behaviours that they show, as these have passed the neurotypical test. 

There’s a common misconception that autistic people can’t read people. This is not necessarily true, and certainly isn’t my experience. I think a lot of high-masking neurodiverse people are actually incredibly good at reading social cues, or more so in understanding the rules of society. The issue, for me at least, comes in the sub-text, or when people mean something different to what they say. I can sometimes tell there is a deeper meaning, but I struggle to infer what it is.

I feel like I can really pick up on other people's, I don’t know, energies? Like I can intuitively feel what other people feel. I actually feel a lot of empathy, which seems contrary to some autism misconceptions. This is common for a lot of AuDHD people I’ve spoken to, too. 

A great group of people I know often say if you’ve met one autistic person, you’ve met one autistic person. ND people are all different. Autism and ADHD are spectrum conditions; they affect everyone differently. There’s also a lot of misconceptions about autism and ADHD, and due to things like sexism and the patriarchy, there is a significant lack of historic research into neurodiversity in women. For example, ADHD is often missed in girls at school. In children, the average age for an ADHD diagnosis is 17 for girls, and 7 for boys. A whole decade of support that girls are missing out on, at a key stage in their development. The average age for an adult woman to be diagnosed is mid-late 30’s, often due to their own children being diagnosed and it highlighting traits they recognise in themself. 

It’s common for people, particularly women, who get diagnosed later in life to go through an ‘unmasking’ - letting go of the socially acceptable, pretend version of you and replacing that mask with your authentic, neurodiverse self. Masking can be why neurodiverse children are often more poorly behaved for their parents than for teachers or family - you’re their safe space, the person they can unmask around. You provide that safety to them. They’ve spent all day masking and working overtime to fit into society, so when they get back to their safe space or person, the mask drops and the meltdown begins or overwhelm shows. 

So, what does all of this mean mashed up together? 

An undiagnosed, high-masking neurodiverse adult may go many years perhaps not knowing they're neurodiverse, or appearing like they have it all together: making a home, working, building relationships. Perhaps the positive traits of their condition, like hyper-focus or creativity, mean they are thriving in some aspects of their life. However, sometimes, when one starts to question their own brain just enough, that mask can start to drop. Slowly, the parts of you that you’ve spent so long hiding away, start to creep to the surface and you become somebody you don’t even recognise anymore. 

A little over two years ago, I became Chair of a disability ERG at work. Being the voice of disabled colleagues was truly a privilege for me, and I wanted to take on as much knowledge as I could during my two-year tenure. I quickly became a valued commentator on neurodiversity, and started to recognise a lot of other peoples’ experiences in myself. One colleague, a lady with AuDHD, shared her experience. This was truly revolutionary for me. She so eloquently explained exactly what was going on in my own head. I had a thought of “hey, maybe I’m not alone. Maybe there are others out there like me”. 

Being around so many amazing people who spoke openly about their own experiences, the strengths their conditions bring them, but also talking so candidly about the struggles they faced was eye-opening. Moreso was their acknowledgement that yes, it’s hard, but it’s about time that society learnt to accept us and make a space at the table for us. I was constantly inspired by the authenticity in my fellow ND’s, that it felt like I had permission to start to question myself and drop my own mask. 

What nobody tells you is that once you start, there’s no stopping it. The more you unmask, the more you become aware of the new, weird things you’re doing. The more you’re aware, the more you realise you can’t control them. The more you lose control, the more you start to unmask. Then you become aware you’ve unmasked more. Then you lose control… and it goes on. And on. And on.

… Until you’re left with this new version of you that you’ve somehow got to rebuild. 

This is where the real fun starts. Here comes along things like skill regression, where, once unmasked or recently diagnosed, you can ‘experience a loss of functional skills’. Basically, things you could once do, you now can’t. For example, some areas someone with skill regression may struggle in are:

• Emotional regulation: increased stress can make it harder to regulate emotions, leading to more frequent overwhelm, burnout, or meltdowns, even if you previously didn’t outwardly display these behaviours. 

• Communication and social skills: verbal and non-verbal communication can become more challenging, it can become more difficult to communicate effectively, or social situations may become more anxiety-inducing. 

• Executive functioning: things like organisational skills, time management, and lack of focus may take a hit.

Now I’m aware this sounds bleak, sorry. I promise it’s not all bad. Once the mask is off, it can often provide relief, helping to improve mental health, self-esteem, and even boost a stronger sense of self. That doesn’t make it any easier when you’re stuck in the trenches, though. 

Unmasking for women can bring its own new set of challenges when you take into account things like societal expectations and gender norms. We’re often expected to limit ourselves and prioritise the comfort and needs of others, something that can be more difficult for neurodivergent people to do.

Why I’m scared

The last couple of years have been incredibly tough for me. I went through a divorce, buying my ex out of the house, debt, taking a few professional hits, instability, and being new to the dating-game as an adult. This led to me really struggling with a newly found lack of confidence, while also discovering new parts about myself that I don’t always like. 

I’m completely burnt out. I’ve been struggling with accepting my new parts, struggling to keep a lid on them, struggling to mask again. If I’m already struggling enough now, what’s it going to be like when I’m forced to unmask more of the autism? Is it going to feel like I’m forced? I don’t know what to expect with starting medication to treat the ADHD, and the feeling of the unknown feels very scary at the moment. I feel like I’m already on thin ice with some close relationships not liking the current me, or like I’m talking too much about being neurodiverse - what if I push them away too far? I’m talking about it a lot, because it feels like a big thing at the moment and I’m scared. But, given that I’m already struggling with the AuDHD traits, I’m finding it even harder to express things in the right way. I need to talk about it, but I don’t know how or when or to whom. Maybe shouting it into the void will help. 

I feel like a caterpillar who needs to curl up in a cocoon for a while, re-emerging as something new. Hopefully it’s a butterfly; it might be a moth. Who knows. But, we’re on the journey now and I can only try to improve a little each day. I’m working towards being a better version of myself, getting back to my happier, more stable self, I may just need a little grace through it. 

I guess my parting comment is a call to action of parents who suspect their daughters are autistic or have ADHD. Be their advocate, push for an earlier diagnosis. Because let me tell you, going through this shit as an adult, and relearning everything I thought I knew about myself, is not that fun.