powered by:
save your skin foundation
neurodiversity: perspective from a person with lived experience
5 minute read
kate zarbatany often wonders how her symptoms of autism went undiagnosed for so many years.
supplied
stay up to date on this topic
when i was diagnosed with autism at 13 years old, i wasn’t even sure what the word meant. my parents told me, in the most basic way, that my brain worked differently than others. it was not good or bad, it was just different.
they explained there may be certain things that would be harder for me to understand… but i already knew that. i always knew that i was different from everybody else, i guess i just thought i was weird, because that’s what people had told me my whole life.
if i’m being honest, it took me awhile to really accept my diagnosis… i mean, i was a teenager, it was covid and i was struggling with zoom calls and isolation. i barely knew who i was and now i needed to figure out who i was as a teenager with autism.
i had so many questions, yet i wasn’t ready for the answers. imagine finding out that there was an actual reason why you acted the way you did — like, a medical reason. what would you do with that kind of information?
it took me a while to be able to talk about my diagnosis. three years ago, i never would have imagined i would be sharing my story and owning my weirdness!
it wasn’t easy. i was bullied all through elementary school, to the point where i even had to change schools. it seemed like no matter where i went there was this invisible barrier between me and everyone else. i thought that if i could just figure out what i was doing wrong and fix it, i would be accepted. after seven years of torment, i decided to confront a group of girls who bullied me. i needed to understand what was so awful about the way i acted that made them decide to make my life miserable? i had been searching for an answer, a profound reason, and all i got was that i acted weird. lucky for me, i left those experiences behind as i came to realize that they were the issue, and not me. high school opened a new world, and i found a group of friends that i can be myself around without fear of judgement.
advertisement
i am now able to look back at my childhood and laugh. how is it that no one noticed? how did i go through all of elementary school, and even an evaluation with a neuropsychologist for adhd, without anyone realizing that there was more to it?
my parents were as baffled as i was. they didn’t realize that my ‘quirks’ were actual symptoms of something. you see, i could focus, even hyper-focus at times, like when i read the entire harry potter series in one week.
they admit now that they didn’t know much about autism, having never met anyone on the spectrum before. it made me realize that their understanding of autism came from how it was depicted in the media. i wonder if this is why cases like mine are not recognized as often?
let me let you in on a little secret, our world is designed for neurotypical people. from 9 to 5 work days and our education system, to all forms of entertainment; like concerts, sporting events and movies.
if you ask my perspective, these were all fashioned for the average neurotypical brain.
you’ve probably seen movies, like ‘mean girls’, or for the people from my parents’ generation, ‘breakfast club’, that are based on a social hierarchy, where everyone automatically knows where they stand and where they want to be.
because i am autistic, i don’t see this hierarchy i just see a bunch of human beings.
i believe this is why neurodiverse kids are often left out, ignored, or seen as weird.
for me, life can often feel like everyone around me is playing some elaborate game, and i just wasn’t given the rules. we have difficulty understanding social cues, which means we generally don’t get metaphors; we tend to be over-sharers, or we might not realize that most people don’t want to hear everything we know about every single one of our interests. basically, we can’t read between the lines.
advertisement
since we don’t intuitively know what is appropriate to say, or what facial expressions go with certain situations, we take examples from the people around us. this is called “masking,” it helps us fit in. it’s important to know that masking does not fix everything. this is something we learn to help us appear normal, but it does nothing to help us feel normal. one of the most annoying things about being autistic, is how my senses always feel like they’re in overdrive.
for example, going downtown in montreal is unusually difficult for me – there are just too many things going on. while you might be able to subconsciously tune things out, i am experiencing it at 1000 per cent. the multitude of smells are the first things that hit me, then the sound of car horns and construction are blaring in my ears. this is magnified by all the people knocking me around as they try to go about their business. suddenly my mind shuts down, it’s like my brain is being filled with endless information, and i can’t process any of it. now i’m hyperventilating because i can’t even remember where i was going. this is something that i and countless other people deal with every single day.
but just like how no two people are the same, no two brains are the same either. we need to be better at celebrating people’s differences and accepting them for who they are. even though there are certain aspects of autism that make my life difficult, i wouldn’t trade it for a ‘normal’ brain. i love the way my brain works; it allows me to see the world from a completely different perspective.
this is why i’m asking you to start celebrating each other’s differences – be curious, don’t hesitate to ask questions because that’s how it starts – with people, people like you and me, not being afraid of what they don’t understand.
kate zarbatany is going into grade 11 at macdonald high school in the fall. she has many interests, and her curiosity will drive her career choices. for now, she is considering neurology or behavioral psychology both as a researcher and teacher. she has spoken and written about her experience of being neurodiverse.
advertisement
as a national convenor and enabler of the canadian brain research community, brain canada supports efforts to reduce health inequities. this includes efforts to assess the different ways that brain diseases and disorders affect men, women, and gender diverse groups, and various stages of neurodevelopment and aging. brain canada’s goal is to advance sex and gender brain science and remove systemic barriers and biases to ensure that all individuals have equal access to – and will benefit from – the results of bold brain research.
share story
