"Congratulations, you're autistic."

The grief and joy of late discovery

Hello friends. In this one I talk about my journey to discovering my autism and ADHD and how I felt afterwards. I did go through a formal assessment, but I also want to say at the top that self-identification of autism and ADHD is valid. Now more than ever, with the waiting lists in the UK growing longer and the cost of private assessments soaring.

It’s no exaggeration to say that finding out about my neurodivergence changed my life.

I was never broken nor defective, just different.

Growing up, I suspected that I had fallen to earth from outer space. Seriously.

Everyone around me seemed to know instinctively how to hold a conversation, make friends and exist in the world. Surely someone had told them the rules?

Perhaps we receive a manual in the post on How to Be a Human and mine just never arrived?

How was I expected to know the rules of life without clear written guidelines?

This heavy sense of unease followed me around for 29 years.

It all came to a head, as these things tended to do for so many of us, during lockdown. We were a year into the nightmare of the pandemic, and it was clear that lockdown was bringing out the worst in me. My pedantic nature had nowhere left to hide and I was constantly falling out with pretty much everyone in my life over what I heard them say (but not, as I now understand, what they meant when they said it).

Other things also became apparent. I loved being cooped up at home a whole lot more than most people. I started to wonder yet again why I prefer being away from people, sequestered away in my own space. While many people were deeply distressed about being apart from their loved ones, it didn’t really bother me. I found it perplexing and more than a tad concerning. Was I some sort of sociopath?¹

The main thing I noticed during this time was my short attention span. I was zoning out on Zooms and zoning out when speaking to my partner. I just could not tune out of the constant chatter in my head.

People thought me to be rude. In fact, they always had, but lockdown had distilled everyone’s worlds and illuminated my neurodivergence in large neon lights.

It was around this time that people were talking online about how surprised they were to discover that they had ADHD. Reading explanations about what ‘inattentive’ and ‘combined’ ADHD can look like, I realised that I possibly fit the bill.

I decided to connect with a therapist who specialised in neurodiversity. At my initial session, I told her why I had started therapy - because I suspected I had ADHD and I wanted her opinion before I told my GP and went down the route of getting an assessment.

After all, I wouldn’t want to waste anyone’s time.

Following my garbled explanation of who I was and why I was on this zoom call, she calmly said:

“It definitely sounds like ADHD. I’m wondering, do you also realise that it sounds very much like autism as well?”

I cried and cried.

I didn’t cry because I didn’t want to be autistic.

I cried because I knew she was right, and I was nearly 30 years old.

I cried for 29 years of not knowing. 29 years of searching in the dark for something, not knowing what it was or why I felt like I was incomplete.

Growing up, both autism and ADHD were presented as ‘conditions’² only little white boys could have. I remember being about 15, distraught at my inability to make meaningful friendships, typing into Google ‘Why am I so weird? What is wrong with me?’

I clicked on one page that described ‘Asperger's Syndrome’. The page said that people with Asperger’s Syndrome prefer museums over the theatre. That could never be me, I thought, because I absolutely loved the theatre and went to weekly acting classes (sounds weird considering my social awkwardness, but there are scripts at acting classes. The words are sorted for you).

No, I don’t have Asperger’s Syndrome, I thought. I don’t fit the bill.

When I had my autism assessment later that year, the lovely clinician ended the session by saying:

“Congratulations, you’re autistic. You’re a remarkable person.”

I remember this only because when we got out of the assessment centre, I wrote it down in my phone. Nobody had ever called me remarkable before (I don’t believe I am remarkable by the way, it’s hard to write this without coming across as a massive big-head). I think he meant ‘remarkable’ in the sense that despite of the big mystery hanging over me for 29 years, whose tentacles had reached every corner of my life and royally messed it up, I was somehow still here, still doing stuff, still muddling along in the dark.

I experienced so much grief in the weeks after the assessment. Waves of it brought the what ifs and the why nots. It could have been so different.

I grieved for that little kid stood in the middle of a parish hall, swaying, hands in their mouth, looking for someone, anyone to tell them what to do, whilst other children danced and played around them at a birthday party.

I grieved for the teenager who thought of a different, weird-in-retrospect plan every week to get other people to like them. Every Monday I used to tell myself, with depleting optimism week on week, ‘This time it will be different.’

I grieved for the young adult who tried and tried and encountered so much humiliation. The one who thought that going to a networking event every week would cure them of social anxiety. The one who thought that if they read enough self-help books and listened to enough guided meditations, they could eventually train themselves to be normal.

I grieved for the time I had lost.

But it was inevitable that I would only find out about my autism much later in life. I’m a 90s kid. I was the ‘shy little girl’. No explanation needed.

I am grateful every single day of my life that at least I know now. Discovering my neurodivergence was like putting on glasses for the first time and gaining 20/20 vision. It didn’t ‘fix’ anything - it didn't even give me those instructions on how to be normal that I have craved my whole life.

But what it did do was give me a set of words that led to finding community and learning that I am not alone in this. It also gave me permission to finally learn to be unapologetically myself. The alien who fell to earth.

Thanks for reading!

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Thank you so much for your support.

Take it easy,

Ren

If you liked this, you might like

I unmasked and no longer knew who I was

How I masked my autism

The Importance of Being Selfish

1. Nope, it’s just alexithymia.

Why am I crying?

2. Medical terms for neurodivergence do not sit well with me.