By Quinn Dexter of Autistamatic
I ratted about in the hinterlands of autism for years after my teenage diagnosis. Understanding lay beyond my reach for over a decade after I was first identified as autistic.
The only concrete information I knew about what made me quantifiably different was on the lengthy diagnostic letter my family received. My angry father had destroyed it after the first reading. No “head doctor” was going to tell him how to treat HIS son.
It was the middle of the 1980s. The internet we now know wasn’t even imagined and formal recognition of the autistic spectrum was years away. Only the specialist who had diagnosed me and a few other forward-thinking colleagues of theirs could explain my diagnosis.
My family would never seek support from them or contact the charities concerned with autism for clarity. That would mean accepting that I wasn’t just a difficult boy who could be disciplined into compliance. They’d have to admit that I was born this way, and they might need to adjust their expectations and their communication with me.
My teens and early twenties were a desert of ignorance about what being autistic might mean. What little information was available to me came through reference libraries. I’d usually have to order the materials I wanted.
I read them in the library itself since they weren’t permitted to be taken off the premises. Then, as now, much of the information I wanted was locked away in professional journals I couldn’t afford. The local libraries often couldn’t get ahold of them either.
Until I started to meet other people like myself online in the mid 1990s, I remained in almost totally the dark. Years of stumbling around with a diagnosis I didn’t understand and no-one to share my confusion with.
I hopped from one disaster to the next, surviving rather than living.
If I told anyone about my diagnosis, I had no way of predicting their reaction to it. People just looked back at me blankly if they hadn’t heard of autism. Others stared in speechless disbelief if they knew of the serious childhood disability of autism (as it was seen prior to the work of pioneers like Lorna Wing and Uta Frith).
There were a few who got nasty, too. Those who thought I was making a tasteless joke or a pathetic excuse for a misunderstanding or failing of mine.
After 1988’s “Rain Man,” some expected me to “prove” my autism by performing mathematical gymnastics or parlour tricks. In the absence of toothpicks, boxes of matches would be emptied before me with expectant looks. They expected me to magically know the total number of matches like a savant.
That cemented my silence. I learned that there was nobody I could trust with the knowledge. I struggled with my secret and thought myself likely take it to my grave.
It’s odd looking back on those wilderness years. I had known I didn’t fit it before I knew I was autistic. I knew that I saw and sensed the world differently to others which was reflected in how I learned, approached, and interacted with the world.
Diagnosis didn’t illustrate the huge, empty pages in my comprehension of people though. I saw everybody as a complex problem to be solved. Social interaction felt like trying to solve a dozen Rubik’s Cubes at once whilst juggling chainsaws.
I literally couldn’t afford to be a recluse, though. It was financially impossible for me to survive living on my own in the late 1980s. I needed to find people I could get on with well enough that I could share accommodation costs with them.
Sometimes it was flatmates, other times it was girlfriends. The only way I kept a roof over my head and food in my belly was by studying people like my life depended on it.
Masking has a cost, though. None of us gets away scot-free. Those were years of constant anxiety, recurrent depression and sleepless nights. I was permanently drained of energy, confused, and stumbling from one faux pas to the next.
Despite all this, I managed to build a moderately successful career and a marriage. Both of those crashed & burned in a few short years but by that time something new had emerged. The World Wide Web…
My rat years are literally half a lifetime ago, but something has caused me to think about them of late. In a few months, I will hit fifty years of age — “The Big Five-Oh.” I’m not big on birthdays. The idea of someone throwing me a party to “celebrate” is my idea of Hell on Earth, but hitting fifty is a personal milestone– one I often doubted I would ever reach.
It particularly resonates with me because I’ve always been a dreamer where the future is concerned. Nothing could stop me lapping up everything I could watch or read about the boundless possibilities of humanity’s future.
I “borrowed” old copies of “New Scientist” from the doctor’s waiting room. I watched TV shows like “Tomorrow’s World” and “Horizon” and absorbed every word. My thirst for speculation over what the future might bring was unquenchable.
I have a penchant for Science Fiction, and the near-future was always my favourite sub-genre. I dreamed of worlds I might live to see, where people like myself might be accepted and embraced by society. Maybe one day even respected for what we could do well, rather than shamed for our weaknesses.
I grew up on an imaginative diet of articles and TV shows about what the world might be like 50 years hence. So many that living in that wonderful future half a century away became a fixation.
I wanted that world of meals in pill form, cars that ran on abundant, clean fuel, medical advances that cured everything from cancer to poor eyesight, and powerful computers linked to a global archive that everyone could access in their local library.
The future we live in is not what we imagined back in 1970 when I emerged, kicking and screaming into this world. It’s better in some ways, worse in others, and many things we thought would be distant memories by now have barely changed.
I find it disappointing that ignorance of autism is as widespread as ever, despite the information powerhouse of the internet. Many people don’t know what autism is, even now. Others hold distorted, harmful views that should have no place in a civilised world.
My diagnosis came at a time that the general public had barely an inkling about autism. A decade would pass before the spectrum was adopted by the establishment. I can’t help wondering how my life may have been different if everything we now know about autism and have learned from autistic people had been available when I was born?
How might my youth have been different? What hurdles might not have been placed in my path if the starting point of my journey through autistic life had been… right where we are now? Might I have been spared those years in the autistic rat warren?
My imagination was set racing, and the result is linked below; the beginning of “The Autist Whisperer.” It’s both an attempt to educate and an indulgence. I imagined a series of educational films produced by the autistic experts of 1970 – not autism experts – autisTIC.
That’s an important distinction.
What would people like myself have taught the world of 1970 about the biggest barrier between autistic and neurotypical people? What would they have hoped their “50 years in the future” might be like? How would our present compare with their predictions?
The Autist Whisperer
The Autist Whisperer is a retro-futurist glimpse at our present through autistic eyes. Part humour & entertainment and part social commentary, but mainly a guide to the lessons I’ve learned over 50 years– lessons about how autistic and neurotypical people could communicate better if only we all tried.
I attempt to navigate a path through what Damien Milton so eloquently called “The Double Empathy Problem.” I’ve planned dozens of episodes, each covering an individual aspect of the communication differences between neurotypical people and autists.
The (fictional) autistic scientists, academics, and social commentators of Vixbridge University’s Department of Neurotype Studies have an invitation for you. Join them, every Wednesday, on a journey through the maze of communication between neurotypes in preparation for the truly neurodiverse world they hoped to build within 50 years.
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