How I learned society is not built for people (like me) with autism

This First Person article is the experience of Isabel Schott, a Winnipeg university student who lives with autism spectrum disorder. For more information about CBC's First Person stories, please see this FAQ. You can read more First Person articles here.

It's the summer of 2021, I've just failed to complete my first year of university and I'm sitting on a video call with my psychiatrist.

The possibility of autism is brought up again; it has been a major subject of our discussions since my younger sister was diagnosed earlier this year. Now, my psychiatrist unceremoniously diagnoses me with autism spectrum disorder.

It doesn't feel as big of a deal to me as it probably warrants, having already been diagnosed with ADHD, anxiety and depression. Really, autism feels like just one more thing to add to my growing list of diagnoses.

At the time, I identified with the term 'high-functioning autism,' a non-diagnosable phrase associated with the old diagnosis of Asperger's syndrome.

I distanced myself from the stereotypical image of autism I had in my head. I saw my autism as the reason I got obsessed with things (mainly books and TV shows), why I could talk about those things for hours, and my sensitive nature. I didn't really think of it affecting much else.

Fast forward through two years of struggling through university, barely managing to complete four courses, and changing my mind about my degree and career goals at least three times. I'm sitting on a couch in a cabin rented by my university's hiking club for a couple of nights and I've just finished reading Unmasking Autism by social psychologist Devon Price. 

It completely changed my perspective on my autism. The biggest thing that stands out is how it shows me that much of who we are as autistics is either because of our autism or a result of society's reaction to our autism. 

After this revelation, I'm more confident in myself and in my ability to properly advocate for myself- Isabel Schott

In the evening, everyone else is playing games and drinking downstairs, while I'm laying in bed trying to block out the noise. I have never felt more isolated from other people before.

But contrary to what some might expect, for me, this is a relief. That's because for most of my life, I've had a challenging time doing things that other people did easily and I used to see this as a failing on my part — thinking I was lazy or overly sensitive. 

But now I can see those things I found difficult (like conversation skills, being around large groups of people or change of any kind), for most people, they come naturally. That's because society is built without the needs of autistics in mind. Much of it is designed by neurotypical people for neurotypical people.

This really shifted my perspective. I had always assumed that society wasn't built for anybody. Now that I know that it does work for some people, I have hope that we can make it work for more of us. Accessibility is giving disabled people access to the same level of opportunity as abled people, without placing an undue burden on anyone.

Now, a year and a bit after this revelation, I'm more confident in myself and in my ability to properly advocate for myself. But it's still scary.

I don't think many people fully understand what it means to be autistic, or what it looks like.

For myself and many autistics, we mask or hide our autistic traits, without even realizing we're doing it, because of negative interactions that may have occurred decades earlier. But masking is incredibly draining, and even when we realize we're doing it, stopping may mean facing social stigma. Living like this means needing lots of time to recharge and to recalibrate our senses. 

Being sensitive to the sensory needs of others can go a long way- Isabel Schott

Asking for accommodations can feel humiliating — admitting that you need "more" than other people.

Because society tends not to see our strengths as strengths, we can feel less capable than our peers.

And autism is a hidden disability. You can't tell that someone is autistic just by looking at them, which means that often, we must inform people about our disability — and sometimes we get pushback. Society is built on complex social interactions and systems that are much harder for autistic people to navigate through. It may be a social construct, but that doesn't mean it and its effects aren't real.

My hope now is to raise awareness about autism and what accessibility actually looks like. Being sensitive to the sensory needs of others can go a long way. Understand that living in this society, as an autistic person, is incredibly draining, and we may need more time to recharge. 

And above all else, understand that you may not be aware if someone is autistic (they might not even be aware of it themselves) — but treat them with compassion, regardless.