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.

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  1. This was an incredible piece. Thank you for opening up and sharing about your own experience. In my own line of work I hear about parents’ concerns and their endless search to find services and resources for their child who was just diagnosed. It’s not often we have the opportunity to hear about one’s own experience. This was so insightful. Thank you!

  2. Thank you for sharing your experience and increasing awareness of Autism in all it’s forms. As an adult who recently began to suspect that I’m on the Autism spectrum myself, this is a meaningful and well-timed post.

  3. I really appreciated what you had to say. I personally identify as having Asperger’s syndrome but lately that terminology is falling out of favor with some so I often just say I have autism. I went undiagnosed and never heard of Asperger’s until I was 37. My wife and I agree that I have Asperger’s. I love what you do with your fashion team. I think like that. Find someone you trust and like I say “I defer to the experts”. I do this with my wife all the time and rely on her expertise in many an area. Especially social protocol. I wanted to introduce myself. I write a blog about my book The Driveway Rules which chronicles growing up with undiagnosed autism and my relationship struggles and what I have learned from them. The greatest thing I have learned is to accept my struggles.

  4. annadusseau

    I really like your writing, Justin. Thanks so much for sharing this personal story. As a teacher, I have met so many gifted young people with ASD and it’s amazing for parents and children to hear the voice of a successful adult who has shared that reality. Thanks again.

  5. Fayyaz Khan Lodhi

    Thank you so much for sharing. You might not even realize how valuable it is, even for people who understand the spectrum well (as parents), but wonder and worry, what the future holds for the light of their lives, once they grow up. Much appreciated.

  6. pythoblack

    I only just recently figured out that my 29 year-old son despises the term “autistic” as an insult to his identity. He’s hard to talk to, and I’m pretty sure he doesn’t appreciate my “wisdom.” So I quietly love and support, with little expectation, hope, or desire that he will ever transform into somebody other than who he is, whatever that may be because I sure as shit don’t know.

  7. Often been asked if I had, but was never diagnosed with, autism. Because I tend to think “weird”, I don’t like making eye contact, often on the spot I develop mutism when I regular chatty Cathy.

    I dates a girl once with high functioning autism.

    I just want people to know, while we try to accommodate the autism communitty it’s important that those with autism (and other neurological disorders), it’s also important to try and see where “neurotypical” types come from in any kind of interaction. I’ve seen too many of my prior buds complain this and that, and they would get in a tizzy when I asked them to see from the other point of view, whether in a simple interaction, or maybe some kind of policy.

  8. I have a milder form of ASD than autism. I enjoyed reading your article. I also write hard sentences. I’m an ASD, I don’t share it with anyone, and I feel most happy to be alone all the time. I buy the same shopping and drinks every time, but I haven’t bothered about it. I have been working hard on the problem of ASD Neurosis for 20 years. Thanks to that, I am now living with almost no problems. It was nice to be surrounded by a wonderful city and friends! Pardon my broken english.

  9. Reblogged this on Tokyo Web Writer and commented:
    I have a milder form of ASD than autism. I enjoyed reading your article. I also write hard sentences. I’m an ASD, I don’t share it with anyone, and I feel most happy to be alone all the time. I buy the same shopping and drinks every time, but I haven’t bothered about it. I have been working hard on the problem of ASD Neurosis for 20 years. Thanks to that, I am now living with almost no problems. It was nice to be surrounded by a wonderful city and friends! Pardon my broken english.

  10. Thanks for sharing.

    I have a son that got the diagnosis ASD when he was 18 years old and my wife was also diagnosed at age 50!
    They are really special and I love them to bits even if I sometimes struggle to understand them!

  11. I’ve become a big fan of yours in the last few months. As someone with several friends and family members who are officially or otherwise on the spectrum, I was not surprised at all to hear this about you. I love that you shared your story. Keep doing what you are doing. I wish we had many more like you in journalism, and in the world.

  12. Catie G

    I am a fairly new listener of Sawbones and now I have to listen to it everyday at work or I can’t focus. I’ve noticed you get very heated and emotional about Autism “cures”. As an Autistic person myself (currently unable to get an official diagnosis), I love hearing that there are successful people out there advocating in a world that seems so hell bent on destruction. Thank you.

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