This article was originally published by Melissa Mooney, EMEA Project Coordinator at Rangam. Melissa is a proud Autistic self-advocate, and she likes discussing all things accessible and inclusive.
This year marks 20 years since my mother and I sat in a faraway Dublin office and held in our hands the piece of paper that would change my life in the best possible way: my Autism diagnosis.
I sometimes try to imagine what it must have been like for my mother that day as we left the big city behind and travelled home to the family farm I grew up on. She must have been relieved, after five years of wanting to help and understand me but not quite knowing how. But she must also have felt a sense of “now what?”.
In 2002, Autism scarcely existed in Ireland’s public discourse and on the rare occasion that it did surface in the media, it almost always bore negative and stigmatising connotations, especially in the years following the MMR vaccine controversy. Even though diagnoses were significantly rising around this time, wider society simply didn’t seem to have the vocabulary to engage with this “new-fangled” concept that in fact had existed as we know it today for decades, albeit on the periphery.
Now add to this discursive apathy the fact that I grew up in a tightknit but under-resourced rural community and most specialist resources my mother had been recommended for me were based many hours away in Dublin – an impossible commute for a mother who worked around the clock and had two other small children to raise. A picture begins to take hold of a child who finally had a word for the way they experienced the world, but lived in a society that, through no fault of its own, wasn’t yet equipped to receive this knowledge I now had of myself.
So above all, I can imagine my mother feeling a bit lonely and bereft of the information she needed to explain my neurodivergence, both to me and to herself.
That’s not to say I wasn’t highly privileged, both in my fortune at getting a diagnosis so young and in the amount of support I did eventually get locally, especially when so little was available at the time. For example, I started resource classes at my local primary school two years after my diagnosis (albeit with the caveat that I sometimes had to share this time with other kids whose needs were entirely different to my own, the poor teacher flitting about frantically to divide her time equally among each of us). Through a local not-for-profit, I also had a part-time carer whose weekly chats helped me become a lot more confident and comfortable in social situations – I’m still close with her to this day!
With that said, I grew up not really knowing or having access to other openly Autistic people in my local community. There also weren’t any Autistic role models or celebrities I could look up to as the pre-digital mainstream media hadn’t yet given them the platform to do so. And that, dear readers, was a major problem.
In the absence of any meaningful representation to tell me “you’re amazing exactly as you are”, I felt agonisingly singular in the way I perceived the world. As far as I could see at the time, there was no-one else like me and I was doomed to be misunderstood for the rest of my life, no matter how hard I tried to bridge this perceived gulf between me and my neurotypical peers. This left me feeling lonely in the evidence of how painfully different I felt to the other kids around me, a feeling which was only compounded by a prolonged period of bullying and exclusion I endured throughout my teenage years.
The absence of community creates a cavity which, when left untended, is easily filled by shame. Unfortunately, this shame was a defining feature of how I engaged with my Autistic identity for quite some time throughout my teens, thinking it an easy scapegoat for what I now know to be inexcusable behaviour from my peers.
But while I was navigating my childhood and adolescence as best I could in my own little bubble, I was oblivious to a quiet but radical sea-change happening in the world around me, spurred on by the wider availability of the Internet.
While toddler me was being gently escorted out of shops by my mother, kicking and screaming in response to what we didn’t yet know was sensory overload, the term “neurodiversity” was being coined by Judy Singer, situating Autism, ADHD, dyspraxia and any other neurological differences not as an impairment or something inherently negative, but as a part of natural human variation. This sparked a movement that brought neurodivergent people from all walks of life together en masse to advocate for our rights and demand more positive representation.
While I was being introduced to the concepts of sarcasm and idioms at my first resource classes, neurodivergent people around the world were patiently booting their dial-up modems to join rudimentary online chatrooms, where so many others who thought like them could be found.
While I was hiding on the library floor of my school so I could read at breaktime rather than grapple with the inscrutable social dynamics of the playground, the first ever Autistic Pride Day was being organised by a small group of self-advocates, their chosen theme being “Acceptance, Not Cure”.
While I was blaring Beatles CDs on my Walkman to drown out the unbearable din of students milling about the school corridor (and the occasional ableist slur thrown my way), the advent of social media birthed countless online groups and communities where people could give voice to their lived experience, find their “neurotribe” and use these platforms to organise for social and political change.
The culmination of these seemingly small gains made by the neurodivergent community was a brave new world, ready to greet me as I arrived at adulthood and first began to proactively explore what it means to be neurodivergent, reading everything there was to be read online from research papers to lived experience blogs.
The more information I consumed, the more the welcome revelation hit home with me that I wasn’t so singular in the way I saw the world after all. Struck by this knowledge that there are many, many others like me and contrary to those voices that told me I was a “loner”, a “weirdo” and much, much worse, there was in fact a place for me in this world that didn’t demand I hide away who I truly was, I wept with relief. After all these exhausting years of trying to “pass” as neurotypical, it finally felt safe to drop my mask.
In the two decades that have passed since my diagnosis, I have been on a meandering journey that took me from a place of indifference as a child, to a place of shame as a teen, and finally, to a place of unreserved pride as an adult. Not necessarily pride in my Autism in and of itself, but pride in every fibre of who I am, which is and always will be inextricable from my neurodivergent identity.
So for me, pride is saying “not today” to shame.
Pride is knowing that my comfort matters, too.
Pride is going forth into the world knowing that it isn’t unreasonable to expect people to meet you where you’re at.
Pride is not waiting for the world to understand you before you can accept and love yourself.
But above all, pride is community.