My Autism Diagnosis at 39: What High-Masking Actually Looks Like

I’ve spent most of my life being called things that never quite fit. Shy. Sensitive. A bit much. Ice-Queen. Not a people person. Too quiet some days, too intense on others. Anxious, obviously, that one followed me everywhere. I collected those words for over three decades and just assumed they added up to “this is who I am, deal with it.”

At 39, I finally got a better answer. I’m autistic.

I’d noticed patterns in my life for years that anxiety and depression never fully explained, things that went back to childhood, long before either of those started playing havoc in my teens. I wanted to understand myself properly. I wanted to understand my relationships, the ones that have gone well and the ones that haven’t. And, if I’m honest, a chunk of it was wanting to be a better, more informed version of myself for my own family.

So I went looking for answers, properly this time, not just googling at 1 am (but there was some of that, too).

What High-Masking Autism Actually Looks Like

Autism in women very rarely looks like the version most people picture. There’s no obvious giveaway. What there is, instead, is a lifetime of quietly working twice as hard as everyone else just to seem normal, and nobody clocking it, including you. I thought a lot of that was due to my dyslexia, but I wasn’t just working twice as hard academically; I was working hard socially, as well.

For me, that meant scripting conversations in my head before they happened. I was rehearsing them, like lines. Then replaying them afterwards, picking apart every word, wondering if I’d said the wrong thing, for hours sometimes. I took jokes and sarcasm literally more often than I’d like to admit, and missed subtler humour completely, not because I don’t have a sense of humour (I’d argue I’m pretty funny, actually) but because I genuinely didn’t always catch what was a joke and what wasn’t. I’ve missed when someone fancied me. I’ve sat through what was apparently a date and not realised it was a date.

Unfamiliar situations got the full research treatment. Parking, routes, menus, timings, all worked out in advance, because turning up somewhere with no idea what to expect felt unbearable. I need the radio off if I’m driving somewhere new, I can’t filter out the noise and concentrate at the same time. I’d get stuck in what I can only describe as “waiting mode”, unable to properly relax or start anything else until whatever was coming had happened.

And I copied people almost on instinct, picking up friends’ speech patterns, their interests, the way they held themselves, because copying felt safer than working out my own way of being. I also felt like if I were like them, people would like me and treat me better.

If you’ve read anything else I’ve written, you’ll probably recognise the next bit: my special interests. Painting that turned into an actual Etsy shop within months. Crochet. Gardening. Houseplants. Piano. Weightlifting and the home gym in the garage. I know how that looks from the outside, just someone who can’t settle on a hobby. That’s not what’s actually happening. When I get into something, I hyperfocus for periods of time. I join every Facebook group, reading everything I can find, building something around it, and often forgetting to eat or sleep properly while I’m in deep. Turns out there’s a reason the pattern keeps repeating.

Recognise any of that? If you do, you’re exactly who I’m writing this for.

The Slow Realisation

This wasn’t a lightbulb moment. I wish I could tell you there was one single day when everything clicked, but honestly, it built up slowly, over decades, in layers.

As a kid, I just felt different. Anxious, always, but also just… off, somehow, in a way I didn’t have words for. Nobody talks to an eight-year-old about masking or sensory overload, so I didn’t have the language; I just had the feeling. Looking back, that’s the bit that gets me most. Not the not knowing, but not even having the vocabulary to ask the right questions.

Teenage years were a mess. I won’t pretend otherwise. I had multiple mental health issues that needed professional intervention. I didn’t always notice when people were treating me badly until well after the fact, either, which didn’t exactly help. By my twenties, I’d found my own ways of coping, drinking to get through social situations chief among them. I don’t drink now, but at the time, it took the edge off in a way nothing else did.

Working life gave me a whole new set of labels. Direct. Cold. An ice queen. “Not really a people person.” Colleagues and friends learned, fairly quickly, not to go in for a hug, fist bumps only, thank you very much. I used to wear that reputation almost like armour, like it was just “my personality,” when actually it had a much simpler explanation underneath.

Then I had my son, and everything got harder to hide. Breastfeeding, co-sleeping, being touched constantly by a small person who needed me every hour of the day and night, it tipped me into a kind of sensory overload I’d never experienced before. I was “touched out”, bone-tired and overwhelmed. Of course, it’s hard to know what you’re meant to feel like, what is new-mum exhaustion vs autistic burnout? All I know is that masking takes energy and there’s none spare when you haven’t slept and a baby’s attached to you most of the day.

The biggest catalyst, though, was watching my own son go through his own assessment process and recognising myself in so much of what was being described about him. That’s when the jokes stopped being a joke. For years, “ha, I’m probably autistic” was just a thing I said, and other people said it back, half-joking. At some point, I stopped laughing it off and started actually wondering if there was something in it.

Why I’d Probably Have Been Diagnosed as a Child

I had so many signs as a child. Looking back now, through the lens of what I know, they were always there. I just grew up in the 90’s at a time when nobody knew to look for them, especially not in girls.

Take the facial twitches. I had them throughout childhood. They were noticeable enough that people saw them, and they got put down to habits and called a ‘nervous twitch’. But facial twitches in a child are a recognised stimming behaviour, and stimming is one of the more reliable indicators of autism.

My parents restricted my sugar and E numbers because I was, apparently, so hyper. Looking back, whatever was driving that hyperactivity had nothing to do with Coca-Cola. But at the time, it was just a dietary thing, the kind of parenting call that made complete sense in the late eighties and nineties.

Around anyone I didn’t know, I was effectively mute. Completely silent. That one got labelled shyness immediately, because it looked like shyness, and that was the handiest box. What it actually was is my nervous system going into full shutdown around unfamiliar people. I couldn’t override it. I just went quiet and waited for it to be over.

Eye contact was, and still is, a whole thing. As a kid, I’d get this full-body alarm response when someone looked at me directly. Butterflies, jumpiness, an overwhelming urge to look away.

I couldn’t eat away from home. Couldn’t even have a wee away from home either. As a child, this was just “she’s fussy,” or “she’s nervous.” What it actually was is a combination of sensory sensitivity and routine disruption, neither of which I had language for, so I just quietly managed around it and got stressed on school trips. I remember being at Browie Camp once and I didn’t eat all week. They said I couldn’t go swimming unless I ate. I really wanted to, but I couldn’t swallow. I managed some beans and fruit cocktail from a tin as it was liquid-based, so I could force it down.

And then there was the copying. I copied my friends constantly, right the way down to their speech patterns, their interests, the way they held themselves, even what they ate. I became intensely attached to particular friendships and basically tried to become those people, which is something I didn’t think twice about at the time. I thought that was just how you made friends. It wasn’t. It was masking before I knew what masking was, borrowing a social blueprint from someone who seemed to know how to use it.

Put all of that together with the speech and language therapy I had at school, dyselxia diagnosis, the difficulty handling loud noises and busy environments, the point-blank refusal to hug or kiss relatives on demand, the way I took everything said to me completely literally and missed humour and sarcasm until someone explained it to me, the routines that couldn’t be disrupted without something in me breaking down (but being shy people pleaser, so not having big explosive meltdowns about it, just disassociating instead) and the pattern is fairly clear. With today’s understanding of how autism presents in women and girls, I think it would have been picked up.

But that wasn’t how things worked then. It added up to shy, sensitive, a bit odd, people pleaser, perfectionist, hyper, quirky, sweet. And I learned, early and efficiently, to manage myself well enough that nobody had cause to look any closer.

How I Actually Got Assessed: NHS Right to Choose

This is the bit I really wanted to write, because when I went looking for what NHS Right to Choose actually involves, almost everything I found was a clinic’s own marketing page telling me how brilliant their service was. Nobody was just telling me what actually happens. So here’s what actually happened, from someone who went through it.

I sent a message to my GP on 7th May and asked specifically for a referral under Right to Choose, which is an NHS England policy that lets you ask to be referred to an alternative NHS-approved provider instead of your local autism assessment service, useful if, like most of the country, your local waiting list is measured in years rather than months. Your GP doesn’t need anyone’s permission to refer you this way, by the way. They can just do it.

By 11th May, I’d had an email from the provider I’d chosen, Problem Shared, to set up an account and start the paperwork, for me and for an informant (someone who’s known you a long time and can answer questions about you; I asked my husband). Everything was submitted by the 15th. On the 18th, I got confirmation that I was officially on the waiting list. Then I expected to be waiting months, maybe even over a year. Then, on 4th June, I got an email offering several appointment slots, all towards the end of June.

My assessment landed on 29th June, 5:30 pm. My informant had their own call at the same time, with a different assessor. The assessors were on a seperate chat so they could relay information between each other.

Mine ran for about two hours. Theirs ran about ninety minutes. Then, at 9 pm that same evening, I had a final video call to go through the outcome. The report came through the next day.

From first GP appointment to an actual diagnosis: just under eight weeks. I didn’t expect it to move that fast.

What the Assessment Day Was Actually Like

I was so nervous when I joined the call. I could hear my heart beating in my chest. The assessor was really nice and tried to put me at ease. She had read through my forms and mostly wanted more examples of things I had put down, so she was delving into that.

It was an ‘ADOS’ assessment, which stands for ‘Autism Diagnostic Observation Schedule’. It basically means during the appointment, she was also observing my communication style, body language, use of imagination and how I respond to things while asking me questions. I also had to complete some tasks. I had the dreaded FROG BOOK, which I know understand is quite common.

You may want to skip to the next paragraph if you are awaiting an ADOS assessment, as it’s best to go into it without knowing what’s going to happen so you have the most natural reaction.

So, the frog book. I still don’t fully know how to explain it except to say it overwhelmed me and confused me. It was a picture book of some flying frogs, and I had to continue the story just by the pictures. After, she started talking about whether I understand sayings such as ‘pigs might fly’, as there was a flying pig at the end of the book. I think I was meant to understand that it was representing the ” the pigs might fly saying, but I didn’t at the time. I do understand sayings like that, but sometimes a bit delayed.

There was a five-object task at one point that I’d have told you, ten minutes earlier, I’d sail through. Instead, I just went completely blank. My assessor noticed and gently let me stop rather than make me stress about it. I also had to describe a cartoon-style scene of people on an island, which sounds easy and somehow really, really isn’t when someone’s watching you do it. She asked me questions about the picture and what I see.

I also had to explain how to make a cup of tea. After this, she asked if I used gestures. I didn’t while explaining how to make a cup of tea, and I guess a neurotypical person may have acted out stirring the cup and pouring the kettle, etc.

In the report, there wasn’t much detail about the tasks other than I described things as they are, factually. I didn’t use gestures, and I didn’t talk about the expressions of the characters. From my research, there’s no pass or fail. It’s just how you use your imagination, what you notice and don’t notice, how you explain things.

At the end of the assessment, she asked if I wanted to find out that day, but it would be about 9 pm. I said yes, otherwise I’d be overthinking!

The Diagnosis, and the AuDHD Question

I was told that evening that the diagnosis is Autism Spectrum Disorder. My assessor also said she thinks ADHD is likely too, AuDHD, as it’s increasingly being called, though that’s a separate assessment, one I haven’t decided yet whether I’ll go ahead with straight away or just let this diagnosis settle in first. So, I have a confirmed autism diagnosis. She believes I have ADHD as well, but it has to be a separate assessment for a formal diagnosis.

What I will say is that it fits. Everything we talked through, the social communication stuff, the sensory stuff, the routines, the special interests, the way I’ve operated since childhood, it all lines up.

I was quite surprised to hear that my special interests don’t fit the autism profile; it’s more ADHD. Because I hyperfocus on one thing for months, then change to something else – she said that’s ADHD. There were some other things where she said it was more of an ADHD thing – such as I hate watching the same film more than once, as I find it pointless if I know what’s going to happen.

AuDHD can be hard to diagnose as the autism gets masked by the ADHD. It’s a push and pull, and it’s chaos to live with. Pair that with being a girl, going through the school system in the 90s, and it’s easy to see why it had been missed until now. It’s also tricky to medicate the ADHD as it can cause the autism to take centre stage and become more obvious.

Just Because I Function, Doesn’t Mean I’m Fine

This is the bit I most want people to take from this post, more than the diagnosis itself.

High-masking women are so often not believed. We’re married, we own homes, we work, we’re “successful” by whatever measure people use for that word, and somehow all of that gets read as proof we’re fine. It isn’t proof of anything. It doesn’t mean we don’t need support. It doesn’t mean we don’t need a diagnosis, or that we’re somehow making too much of things.

What you see is a person who’s functioning. What you don’t see is the hours I’ve spent awake at night ruminating over a slightly awkward conversation from three days ago. The scripting before I’ve even left the house. The planning, the over-planning, the spiralling when plans change at the last minute. What you don’t see is who I actually am when I’m at home, alone, properly relaxed, with nobody watching, because that version of me looks quite different to the one you’d meet.

And here’s the part I think gets misunderstood most: masking isn’t something I can switch on and off on command. It’s not a decision I make each morning. It’s an automatic coping mechanism; it happens because my body and mind have decided a situation isn’t safe, not because I’ve consciously chosen to perform. I don’t come home and “unmask” like I’m taking off a coat. It happens on its own, gradually, only once everything in me has decided it’s actually okay to stop. Sometimes I feel like I live in a state of trauma when I’m outside of my safe space, and I just try my best to cope until either I am home or I disassociate.

So if someone in your life seems high-functioning, together, fine, on the surface, please don’t take that as the whole story. Believe people. Masking well doesn’t mean someone isn’t struggling. It often means the opposite.

A Few Things People Always Ask

Is this just being introverted or anxious?

I asked myself this for years, which is partly why it took so long to get here. The overlap is real, and struggling with people can look identical whether the cause is anxiety or autism. The bit that was actually autism, for me, was things like taking language literally, not picking up on humour or romantic interest, and needing to consciously learn social “rules” that other people seemed to absorb without trying.

What is NHS Right to Choose, and how do I access it?

It’s an NHS England policy that lets you ask your GP to refer you to a different NHS-approved assessment provider instead of automatically going on your local trust’s waiting list. You don’t need special permission, just ask your GP directly for a Right to Choose referral. It’s not available in Scotland, Wales, or Northern Ireland, only in England.

What is AuDHD?

It’s not an official diagnosis, more a term that’s grown popular for having both autism and ADHD, which is genuinely common, somewhere around seven in ten autistic people are also thought to have ADHD. As above, mine isn’t confirmed. I’m mentioning it because my assessor said it’s highly likely.

What are common signs of autism in women?

Honestly, read the section above again; that’s the real answer, better than any generic checklist I could give you. But broadly: masking, scripting social interactions, sensory sensitivities, intense special interests, a strong need for routine, and a lifetime of feeling slightly out of step with everyone else without knowing why.

Looking Back

I might not need as much support as other people, but the diagnosis is part of knowing myself. Rather than wondering if I’m autistic and feeling like I’m wasting my time going down rabbit holes looking into that, I can just accept it, process it, and put the right strategies in place to stop myself spiralling. I can work on knowing myself, build a bit more emotional intelligence, and learn to regulate myself properly.

And even better, I can be a voice and an advocate for those who aren’t as fortunate as I am. Maybe that’s people who don’t have the ability to communicate how they experience the world. Maybe it’s other high-masking women who are just coming to terms with things later in life. Maybe it’s young girls who are trying to cope but struggling in silence. Maybe it’s little boys like my son, who doesn’t yet understand he’s different.

And that’s why I’m sharing this.

The bit that worries me most is how many high-masking girls grow up scared of being judged, go completely undetected, often right through the years when it matters most, and end up with severe mental health struggles in their teens that nobody ever traces back to the actual cause. I’d like to think a post like this is one small way of changing that, for someone.

I might seem fine now. Married, working, a house, a son, all the markers people use to decide someone’s doing alright. But getting here involved a lot of pain I didn’t need to go through, years of feeling different, shy, awkward, weird, with absolutely no framework for understanding why. I wish, more than almost anything, that I’d had the right words back then, and a bit more emotional intelligence about my own brain. I wish I’d had someone to guide me through it instead of working it all out alone, decades later.

I actually wrote about being neurodivergent before I had any of this picture, back when dyslexia was the whole story I had. Reading that post back now is a strange experience, knowing what I know now. If you haven’t read it, My Dyslexia Story is probably a good companion piece to this one.

I’m not going to pretend a diagnosis at 39 fixes anything overnight. It doesn’t. What it does give me is an explanation, finally, for a lifetime of things I’d quietly blamed myself for. That’s worth a lot.

If you’re a high-masking adult wondering whether any of this sounds familiar, I’d love to hear your story, however far along you are in figuring it out. Let me know in the comments.

Related posts:

• My Dyslexia Story – How Neurodivergency Has Been Positive For Me