Young voices on neurodiversity: a personal story

Young voices on neurodiversity: a personal story

19 March 2024

Ahead of Neurodiversity Celebration Week (18–24 March), we asked members of our Youth Advisory Council to write about their experiences of neurodiversity to share with the Orygen team. These stories were as insightful as they were powerful and so, with the young person's permission, we are sharing one of them anonymously with you today.

I didn’t realise that I was neurodiverse until later in life – my adulthood. Getting a diagnosis was a privilege that took an enormous amount of time, money, and spoons. My life would have been a hell of a lot easier if I had known that I was an autistic person with ADHD back in my childhood. Looking back, the signs of my neurodivergence are so clear that it’s almost laughable.

I was constantly getting in trouble with teachers, other students and especially my family. I felt like nothing that I did could be right, no matter how hard I tried. I’d lose everything, from school bags to the shoes off my feet, and couldn’t manage to get anything organised. I have lost track of the number of detentions I received in my primary school years. My mother believed that I was misbehaving on purpose to mess with her head, and would often punish me for it. I grew to think that something inside of me was inherently wrong.

When I’d feel any emotion as a child it would echo throughout each crevice of my body, and my hands would tingle with the need to move. This was how I’d process my emotions, how the intangible became tangible. When my emotions felt too strong I would have a visceral reaction, flapping my hands, jumping up and down or playing with my hair. I’d often struggle with overstimulation when stressed, picking my nails, scratching my skin, or having full-blown meltdowns where my brain would seem to shut down.

Now that I’m diagnosed, I know that I was stimming. Stimming is a symptom of both ADHD and autism and is short for the term ‘self-stimulating behaviours’. I loved stimming as a child until I learnt that it was wrong. Growing up, I used to lock myself in the bathroom to stim, as I didn’t want my family to get angry at me. At first I would stim in ways that made me feel good, such as flapping my hands with excitement or rocking back and forth on the floor. But by the time I was 10, I despised the fact that I needed to stim to get built-up emotions off my chest. I would lock myself in the bathroom and bang my head into the wall repeating “bad, bad, bad” or the r-slur to myself until I’d have a headache. These words that family, friends and teachers had said to me previously when I’d stim in public became labels I’d smash into my skull, in an emotional and physical sense.

Now that I also do work within the disability advocacy industry, it’s pretty easy to diagnose little me with a pretty severe case of internalised ableism. My heart breaks for him, and I don’t blame him for falling sick in the first place.

Because I was taught that stimming was wrong, feeling any emotion became ‘wrong’ and scary for me as well. I learnt very quickly to ignore the urge to stim, and with that I learnt to ignore my emotions.

I learnt very quickly how to mask my neurodivergence as a child, but my neurodivergence is a core part of my identity, so repressing my neurodivergence had me repressing everything else about myself too.

When I was diagnosed with ADHD and autism back in 2021, the psychiatrist was amazed that I had gone for so long without a diagnosis. He proclaimed, chuckling in disbelief, “I can’t believe you haven’t been diagnosed yet, this is the strongest case of ADHD I’ve seen in a long time.” I had gone in seeking an ADHD diagnosis and was told in that appointment, much to my surprise, that I also had autism. I was 21, and diagnosed the day before Christmas. What a Christmas miracle getting a proper diagnosis was!

Getting a diagnosis drastically changed my life for the better. Once I was provided with the vocabulary to describe my experience I not only felt so much less alone but was able to start my journey of unlearning internalised ableism. There was nothing wrong with me, but something wrong with how society had been structured, and something wrong with how inaccessible getting a proper diagnosis was.