So, it’s Autism Awareness Day

I struggle with eye contact, have a flat, slightly stilted way of speaking, and walk with a gait.

I love learning about relatively minor things in great detail, love telling people about those things, and can get bored quickly on subjects that don’t interest me.

Routines or having items in a specific order give me calm. Introducing new things into my life, or being thrust in a large crowd where I don’t know anybody, gives me anxiety.

I have strengths and weaknesses like everyone else, but my strengths are very strong and my weaknesses create real challenges.

Putting together a detailed report with charts and graphs showing whether a government has completed every single promise in their election platform is straightforward for me. Cooking dinner is not.

All of those things have been true in my life as long as I can remember. For much of it, I mostly considered them a constellation of little quirks that made me unique, in a sometimes frustrating but mostly fun way.

Of course — as you probably figured by this point — there’s a little more to it than that.

World Autism Awareness Day, even in a moment as strange as the one we’re all living through, is an opportunity for everyone to learn more of a condition that millions have, but is hard to fully understand because of how multifaceted and complex it can be.

Part of the reason for that is it affects everyone differently. Some autistic people will always have difficulty without significant support systems in their lives. But there are people with milder forms of autism who can live independently and go about life — for the most part — in ways similar to neurotypical people.

Like, um, me.

Autism Spectrum Disorder (ASD) is a neurological condition diagnosed in around 1 of every 66 children in Canada today.

Most have a general knowledge of what “autism” means for most people — the awkwardness in communication or social interactions, the same actions repeated over and over again, the lack of interest in doing certain tasks.

But the word “spectrum” is almost as important: it indicates the diversity of how it affects people, because there are dozens of symptoms that can range from non-existent to aggressive.

And as our understanding has grown, so have the types of resources available for people and families.

(Also, it’s important to note that the language used to talk about autism has changed. “Autism” was more or less the blanket classification until the 1990s, when Asperger’s Syndrome became a clinical diagnosis for milder forms. Now, ASD is the commonly used term for anyone on the spectrum.)

Because of that diversity of experience, I can only speak for myself and tell my particular story.

When I was quite young, my parents talked with doctors — and had me speak with child psychologists — to try and figure out why I was intellectually advanced but socially, um, less so.

I learned how to read and talk incredibly fast, but some strangers couldn’t understand what I was saying and might ask what country I was from. I would trace literally every single bus route for Greater Victoria in road maps and memorize their timetables, but struggled to read facial expressions, like whether someone was happy or upset, the way most kids did.

Asperger Syndrome wasn’t a clinical diagnosis quite yet, but I fit pretty much all the symptoms.

And so, my parents looked for the patchwork of services that existed at the time — intense speech therapy lessons for years at one clinic, occupational therapy at another. Classes to learn how to hold a pencil, some after-school activities meant for “normal” kids, others geared explicitly for those with special needs.

Doing well in school wasn’t a problem: repetitive behaviour to learn basic information was very much in my wheelhouse.

I also found backdoor ways to be verrrrrry involved in extracurriculars at school — not great at sports, I became the statistician for the basketball and soccer teams. Not great at acting, I learned every single word to Les Miserables in a fevered attempt to be the best assistant director possible for a high school musical.

And I was extremely lucky to have large families that showered me with love and support, giving me presents to help explore whatever obsession I was into at the time.

Through all of this, I was oblivious to my unofficial diagnosis, but created justifications in my head for things: like why it took years for me to warm up to someone and call them my friend, or why there were still words I had trouble pronouncing, or why I *had* to order Coca-Cola from the same vending machine at the same time every day.

When I was most of the way through university, my mom filled me in on the backstory, probably the biggest lightbulb moment in my life.

It helped me better appreciate my strengths and weaknesses, allowed me to improve workarounds for certain tasks and situations I struggled with (and still do!), and helped me worry less and be self-deprecating when it came to things I had less control over.

I’ll always see the world in a slightly different way than most people, but I’ve figured out a system that works for me, and it gives me great strength.

It’s my unique story in some respects, but it’s similar to many who realize they have ASD in the middle of life.

So why share?

Part of it is, as the hokey phrase goes, to “raise awareness”.

Hundreds of thousands of Canadians have autism, but few are publicly shared cases from adults with milder forms. It means understanding the full range of the autism spectrum can be limited, and by giving my story I’m hopeful it gives others a broader picture.

Part of it is honesty: I try to be a fairly open book as a journalist, and often say that if someone feels they know a reporter, they’re more likely to trust the information being provided.

This is a small way of doing that — but also an opportunity to add context to the half-truths I give when co-workers or people online joke about my love of ranking things, or how I get obsessed about Municipal Issue X, or can appear more comfortable with stories that involve numbers and concepts instead of people and feelings.

And part of it is, in a small way, to try and be a positive example for people on the spectrum or parents of autistic children.

Every day, I get to do my dream job, in a city I love, surrounded by an amazing group of friends. And the more I’ve pursued my passions, the more I’ve shared my eccentricities and interests, the more folks have reacted in an incredibly positive way.

I’m grateful and privileged, but my story isn’t singular.

If there’s a university student on the spectrum thinking about journalism as a career, a teenager worried about what “adult life” will be like, a mom anxious about how her kid will fit in at the new school, I hope they can take a little bit of optimism reading this. Your challenges are surely unique from mine, but I promise that your opportunities are endless.

As for everyone else?

If I don’t keep eye contact the next time we talk, hopefully you understand.

Categories: FeaturesTags: , ,

76 Comments

  1. Chris

    Reading your piece reminded me of the most rewarding, endearing and funny(oh, yes funny!) kids I worked with as a special ed teacher. I saw incredible strength in those kids that helped me contextualize my own challenges. I miss that part of my job. It was the best! Thanks for your work, Justin. I’m a fan.

  2. kirstenpendreigh

    Thank you for sharing this Justin. You are one of my go-to sources for honest and accurate reporting. And your rankings, analysis, and funny comments are a highlight of Twitter for me. Have a great day. Virtual hugs!

  3. Ash Kelly

    Thanks for writing this, Justin. I am amazed at how far the conversation around ASD acceptance and really appreciate learning about your experiences and memories.

  4. Neetu Garcha

    Justin,
    From the very first time you vetted my online copy, I’ve always been blown away by your unique skill set, attention to detail and work ethic. Thank you for continuing to use those to make a meaningful difference in society and people’s lives. I’m so glad you shared this and am grateful to know all this about you. You are remarkable and deeply respected.
    Neetu

  5. Pam Shaw

    Well, I, for one, am grateful that you are exactly as you are. Thank you for telling your story. And thank you for your work during this pandemic. You are helping a lot of people.

  6. Cynthia

    Thank you. As a parent of an undiagnosed son I laughed at your story about buying clothes. I used to buy my son’s clothes, bring them home, and then return the majority. He too has learned work arounds and has, mostly, embraced his quirks. I am so proud of his intelligence and drive.

  7. Erin Tarbuck

    Thank you so much for sharing this. I have two Autistic children, and teach many in my work. I really appreciate you sharing your story!

  8. Geraldine McElroy

    I am sure people do not want to hear from your proud Grandmama — but here goes: You are very modest about winning awards — like the Webster Award; or many, many awards in school, one year so many, you had trouble carrying them all at once. I especially love your talent with music: composing, singing and acting — my two favourites being “I do not like Green Eggs and Ham” and at the end — well, you can act, I tell you! The other one, you play the piano and with a silly hat on, sing: “Felix the Cat” — or when you were in Grade 10, composed music for Speech Day for your school, and you had the school’s senior musicians play it — and on and on. And before you were five, you had your Dad buy you a cook book: “When I am Five” (I think it was called), and would come over on a Sat to bake. Baking is what you loved to do. Or that stat book you had me buy you in Vanc — I meant I would buy you a book around $5.00 –you picked out a $35.00 book — lots of money when you were only about 8? (Not sure how old, but young). And you read every single stat in that book. The pages were wafer thin, so many pages…..But you could not find the vacuum cleaner when it was your turn at your home to vacuum — you were reading and resting your feet on the vacuum — but could not find it! When you had me drive you somewhere, when you were four, by saying: “I know a short cut” — meant, you wanted to see another part of Victoria that you had not been on yet, and in Vanc., you only had to be there once and knew your way around. Wow! You brought joy and light to Grandpop and me — and probably despair to your parents — but then, it wll even out in the end. Have I embarrassed you enough, Justin? I could go on and on. Always remember — you are unique — and stay that way! With love, Grandmama

  9. Jonathan

    That “people would ask if I was from another country” line really hit me. Never heard anyone describe that before.

    I, too, grew up in Victoria, and am of a similar age. Had people say that to me a few times. And it was so frustrating when so many people had trouble understanding me, even into early adulthood.

    I can definitely relate to what your Grandma said about you, too. I was always the navigator on family trips, even when I had only been somewhere once. I’d get map books as Christmas presents. (I especially loved the MapArt ones and eagerly wait for the new edition).

    I also never knew as a kid I was on the spectrum. Even now, psychiatrists have suspected it, but it’s so hard to be officially diagnosed with few concrete benefits as an adult.

    But it’s heartening to have examples like you to look to as role models of people who have found their passion, a good job, friends, and independence despite the challenges. I usually find it hard to relate to other people, but this story was one that really hit home.

    Thanks for sharing.

  10. blazedillon

    Coming from someone autistic i relate to well almost everything in there and it was Refreshing to read something so True and Full of facts. I appreciate you! 🙂

  11. I have a good friend who’s on the spectrum. I didn’t know that until a few years ago. It surprised me. I mean, I went to school with her, we lived in a dorm together, and I never saw anything. But I talk to her, and I am always there for her. Because, I can’t imagine how hard it can be.

  12. Amazing, thank you so much. After years of struggle, my 13 year old son in on the pathway to be assessed for ASD. There is not enough information about the spectrum out there: so many families struggling to understand the complexities of their child which then means they struggle to support them. Learning about ASD and how my son fits into that spectrum was like a light going on. I’m starting to understand him now and therefore to better support him. Hearing the experience from an adult with ASD can only serve to help more. Thank you x

  13. This is so beautiful. I understand Autism Spectrum Disorder a little better now. I live in Kenya, and we still have a long way to go in recognizing people with this disorder and helping them live the best lives they can. Im gna share this with my circle. I hope it will reach whoever it is ment to reach. Thank you.

  14. I really never knew anything about autism or that such a syndrome existed not until I read UNLOCK by Karen Kingsbury I realized that people with this syndrome actually do exist. This write-up is an eye opener you know thanks for sharing your experience it has given me another perspective to life and made me realize that there are many kids out there that need to be understood and guided instead of being just judgmental and also in every deficiency there is surely a sufficiency.
    Thanks so much for the write-up

  15. Not at all singular in our world. My favorite students have always been the ones diagnosed with Autism. Everything every other teacher complained about, I loved. In my world, they were the smartest, most caring and observant students I’ve ever known. But, then again, I don’t do well in crowds and loud noises make me anxious. Quiet and routine comfort me too. But, I love a different perspective and intricate details that teach you something new. Congratulations on being remarkably wonderful.

  16. Laureen Whyte

    Thank you for sharing this!! For me, with no experience or exposure to Autism, it was an inviting and lovely way to learn about it. You are an outstanding journalist, and I think many British Columbians see you as a dear friend who makes the world a bit more enjoyable every day.

  17. Marcella

    Such a great post! Me and my husband are both pretty sure he’s on the spectrum too, and as I read your opening and the examples you gave of loving detail and discussion of topics you’re interested in (and getting bored quickly with other stuff), I felt another bit of recognition. Thank you for sharing and your story this with the world!

  18. Thank you for sharing your experiences. I thoroughly enjoyed reading it, especially that I learned a lot from it. I personally don’t know anyone who is on the spectrum. But this post reminds me of how much better our lives will be if only we learn to understand others and be empathetic.

  19. Don Wright

    After a long week when I was trying to do my part, I confess to have been a little weary. Your beautiful piece was the tonic I needed. Thanks very sincerely.

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