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VOICES

Late autism diagnosis 'Now I know, I don't care what anyone thinks of me'

Clare McAfee documents how she went from being a girl who never felt like she fit in to a woman who knows what she wants.

I HAD FOUND myself being introduced to my potential for being autistic via two routes. Firstly, the TikTok algorithm suggested it. Yes, really. I started to see videos of late-diagnosed women talking about their experiences of what it’s like to be autistic, and the similarities were uncanny.

Around the same time, my counsellor also suggested it, during a session where I think I woefully recounted my frustration at never being able to learn how to drive, my utter revulsion at the feel of a wet kitchen cloth, and how using the London Underground always gave me panic attacks (turns out they weren’t panic attacks, but autistic meltdowns).

Months later, having sat with a psychologist in the final moments of a 5-hour assessment for Autism Spectrum Disorder/ASD, I was told that yes, I’m autistic. I felt… vindicated. Relieved. And, very frustrated at the impending credit card bill. This is very much my story, it might not be the same for all people in this situation, so keep that in mind. This is how I came to find out I was autistic, in my 40s…

Getting a diagnosis

Trying to access the darn ability to find out on an official basis whether you’re autistic or not once it’s been recommended to you, feels next to impossible. It is incredibly difficult to get an autism assessment as an adult in Ireland unless you can go privately and pay out of pocket. It’s a pattern mirrored in the UK, where there are currently around 140,000 people on a waitlist for an autism assessment. So ultimately, there are going to be a considerable number of people who never have access to an official autism assessment, and that fact can be a very hard pill to swallow. As if being unaware you’re autistic hasn’t been hard enough, now trying to get it recognised is a huge barrier.

It can make one feel rather hopeless about it all, but what I will say is that in the absence of official testing, the separate official autism tests online always came up with an answer for me — autistic. I’d feel relief when it told me I was, then would gaslight myself into thinking I wasn’t because I must have exaggerated the test answers somehow and effed up the results.

I think I took the Autism Spectrum Quotient test at least 10 times, yet it plonked me firmly on the spectrum each time.

Whether officially diagnosed or whether you suspect you’re autistic, our experiences pre- and post-realisation all seem to be pretty similar. I didn’t know I was autistic until 2023, at the age of 40.

Most of the human interaction I’ve had in those 40 years has taught me that I’m… just wrong. Frankly, it’s left me feeling like I’m an alien living on the wrong planet, an analogy that seems to be quite common among the neurodivergent community. I don’t think the right way, I don’t act the right way, I’m too loud, I’m too quiet, I’m too much, I’m not enough, I’m too sensitive, I’m insensitive, I’m too kind, I’m selfish, I’m smart, I’m stupid. I’ve literally heard them all. 

But why the dichotomy? Because this is what happens when you’re neurodivergent – you do what is referred to as “masking”. You aren’t born with many of the innate skills when it comes to communication and interaction that our neurotypical counterparts are blessed with.

Masking

So what do you start to do as a young child, when the built-in knowledge on how to communicate, on how to just be, isn’t there? You copy everyone else. You learn by experience what is acceptable and what isn’t, yet the irony is, you never quite get it right.

And on top of that, people perceive you as something you really are not. They can’t quite put their finger on why they don’t like you, or why you just don’t quite fit in. Essentially, they know you’re different, but they don’t know in what way.

And you know you’re different too, and you also don’t know in what way, or that there’s even a name for it – or that there are many other people just like you.

Ultimately, for the most part, you’re left feeling very alone, and overall it leads to so many traumatic encounters and scenarios. For me, being undiagnosed has affected every aspect of my life from my health to my career and finances, my relationships and even my personal safety.

The impact

Health-wise, none of my neurodivergent friends are without medical issues. Evidence points to widespread immune dysregulation in autistic individuals, and I’m no different. I have a 24/7 migraine, joint and pelvic pain, and often feel like my brain and body are just worn out from the stress of living in a world simply not suitable for neurodiverse people.

I’d argue that the world isn’t all that nice of a place for neurotypical people either. Who wants to be packed like sardines into a really noisy train and then sit in a ridiculously brightly lit office all day? The stress that puts on the human body, both physically and mentally, is huge. In simple terms, it can’t be good – for anyone.

It’s reckoned approximately 16% of autistic individuals work in full-time employment. And it isn’t because we don’t want to work. Tone down the dang lights and noise, offer flexible working conditions and you’ll find some very talented individuals who have unique skillsets to offer.

Don’t penalise someone financially and overlook them for promotion, just because you think their communication skills are lacking, or that they don’t quite fit in with your office culture. I look back on how much money I lost out on, the promotions I was never considered for and it’s a very tough pill to swallow.

Evidence shows that 9 out of 10 autistic women have experienced sexual violence, and unfortunately, I’m included in that horrid statistic. Thankfully I’ve been able to access an amazing counsellor, and although I’m still affected by what happened, I’m able to look past it.

But I’m left with the nagging feeling of… had I been able to read the cues, been able to identify the signs that would have kept me safe, had I known I was autistic, then maybe what happened to me wouldn’t have happened. I know I cannot say for sure, and I also know that this is what happens to survivors, the ‘what ifs’ and we never really know, so it’s something that weighs on me sometimes. My relationships also suffered twofold, both because of what I had survived and because I was undiagnosed.

Diagnosis

Regardless, not being diagnosed made it impossible for me to be in a healthy relationship. So now I am diagnosed, since last year. What happened after diagnosis? Well, you go through all the stages of grief – denial (I’m not autistic), anger (why the f*ck didn’t anyone know?), bargaining (surely I’m not really autistic, am I?!), depression (well f*ck, I’ve wasted half my life), to acceptance.

Acceptance is the best part. Essentially, you naturally begin to do what is now scientifically referred to as “unmasking”, and begin to find out who you really are as a person, when you’re not subconsciously copying everyone else. And boy is that a journey, the details of which I could probably fill an entire book with, but I’ll try and keep it to a short paragraph.

I have gone from being Clare who has a wardrobe of neutral colours, has never dyed her hair more than few lighter shades of blonde, has no tattoos, no piercings (other than one in each ear, wouldn’t want to stand out!), who is straight, has only ever dated men, only ever engaged in monogamy, to someone entirely different.

I’m Clare who wears funky colours and patterns, has pink hair, tattoos, nine piercings, is pansexual, practices ethical non monogamy and, most importantly, no longer cares one iota what anyone else thinks I should look like, should say, or should be. I also refuse to continue to hide who I am and pretend that I’m anything that I’m simply not.

To sum up this entire experience, I’m going to borrow the words of the actor Pedro Pascal in a recent magazine interview: I’m relinquishing expectations around what it is to be middle-aged and what it means to be fully grown up… why am I trying to force a square shape into a triangle?

I certainly won’t be doing that any more, and I think the next 40 years of my life will be all the better for it.

Clare McAfee is obsessed with interior design, with a focus on creating autism-friendly spaces. She has “too many” books and vinyl records, is a Hans Zimmer and EDM enthusiast, an avid player of 90’s LucasArts games, and the owner of Daisy, the naughtiest mini sausage dog in Ireland.

If you have been affected by any of the issues mentioned in this article, you can reach out for support through the following helplines. These organisations also put people in touch with long-term supports:

  • Samaritans 116 123 or email jo@samaritans.org
  • Text About It - text HELLO to 50808 (mental health issues)
  • Aware 1800 80 48 48 (depression, anxiety)
  • Pieta House 1800 247 247 or text HELP to 51444 – (suicide, self-harm)
  • Teen-Line Ireland 1800 833 634 (for ages 13 to 19)
  • Childline 1800 66 66 66 (for under 18s)

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