The signs were there!

I was diagnosed Autistic and ADHD in March 2023.  Like many, I didn’t fit the typical diagnosis and flew under the radar. My neurodivergence was seemingly nothing more than a prerequisite of being already Disabled. Surely it couldn’t be more?

Looking back, the signs were there.

Struggling to focus, feeling pure overwhelm or nothing at times, constantly touching, feeling, even licking fabrics or things to experience their texture.  The difficulty understanding, overthinking, not thinking, struggling to respond. The constant nail biting fidgeting, tapping my food the need to stim. 

The absolute obsession I had with Pokémon and Star Wars, to the point nothing else existed and it was all I talked about, and played with, still to this day. Being glued to my mum’s leg. Not wanting to be left alone. Literally attached to her leg. Trying to make friends, I’d say the wrong thing, be misunderstood, take things too literally, and people would call me weird or say I was too hyper.

As a teenager, I felt lost, confused about my sexuality. Hating my already Disability, ocular albinism with nystagmus, fancy, I know).  Not knowing why I was the way I was. Why did my mind constantly jump or race? Why wasn’t I like everyone else? I would feel overwhelmed at the most random times, over-emotional, with the slightest thing sparking a strong reaction. Not the right brand of beans, not the right brand of bread, not eating opened bread I hadn’t seen be opened. Having the worst love-hate relationship with food, hating most food that wasn’t bland, making it difficult to eat out.l and at home. 

But I was already Disabled. 

I thought that had made me different enough. I’d known how to mask since I was young. It was my way of hiding that I didn’t like what was happening or pretending that I was fine when really, I was screaming inside. The smile, the over-politeness, the overconfidence, the toxic positivity, I thought it hid it all.

But masking didn’t always work.  I’d turned to risky behaviours, drinking and substance abusing. I would feel sad but not depressed, overwhelmed but not anxious, and prescribed meds that didn’t seem to help. 

A lot of what I masked wasn’t just because I was neurodivergent but also because I’m registered blind. Being Disabled or neurodivergent, masking is what helps us blend in, it helps keep us under the radar, keeps us safe. It’s like a protection we get so used to wearing that over time it becomes harder and harder to remove.

Had I masked being Disabled for so long that I somehow managed to mask any thought or idea of my neurodivergence?

That moment of realisation 

I was in work, listening to a speaker talking about ADHD, and they were sharing their experiences, and I sat there, jaw lowering with every new piece of information. That’s me, omg I do that, am I ADHD? They are talking about me. That was when I had my realisation.

One year later, I booked my ADHD assessment. I used my first speaking money to pay for a private diagnosis. I remember saying to my partner, what happens if they say I am autistic instead? I had been lost in research for months, the signs were there, they were always there, I kinda seemed to sit somewhere between the two.

That’s the thing about realising you’re neurodivergent, it doesn’t just happen overnight, you spend so long researching, trying to find answers, trying to understand yourself, and it’s not easy, it’s an emotionally triggering path. But you know yourself, and in the research, you realise.

Getting my diagnosis wasn’t the magic wand fix you might think it is, it’s a journey, with bumps and twists.

You will mourn, you will be angry.

You will be confused.

You feel like you’ve been given a key that opens all these past doors.

There are moments of realisation.

And moments of tears.

You feel like you know yourself but don’t know anything at all.

You think, how did no one know?

And then ask, why didn’t I?

You’ll digest so much info trying to figure it out.

Only figuring it out isn’t like it said it would be in the book.

But it doesn’t suddenly get better, or magically make you prepared.

Understanding this thing about you leads you to need to understand more.

And in the process, identifying just how much you relied on masking.

Just how much you were actually struggling.

Just how much of your past you wish you could rewind to.

You’ll struggle, you’ll scramble, but you’ll slowly start to figure it out.

Piece by piece, part by part.

We also need to remember accessing diagnosis is a privilege for many.

Many women face medical barriers when seeking a diagnosis, and in the past, the diagnostic criteria only sought to identify boys who behaved in certain ways. When we also consider the additional barriers experienced by Black, Brown, and Indigenous communities, we have to understand that a diagnosis is not always possible. Not just due to financial barriers but also systemic barriers and cultural stigma.

Access to diagnosis is a privilege, one which my speaking allowed me to pursue.

Did it give me all the answers?

No.

Did it make everything better overnight?

No.

Am I glad I did it?

Yes, because understanding why I am how I am is so much better than the what if I had known sooner that comes with knowing.

Until next time...

Jamie Shields

Registered Blind AuDHD Rhino

www.Disabledbysociety.com