What it's like to be autistic: one Winnipegger's experience

Charles J. Sisetski always knew he was autistic, but he didn't know what it meant. "I am very lucky to have autism even though I didn't always see it that way," he writes.

Charles J. Sisetski is 'optimistic about chance of a successful life with autism'

Charles J. Sisetski is a fan of CBC and superheros. (Submitted photo)

From a young age I knew that I was autistic, but I didn't always know what that meant.

If you were to consult Webster's dictionary this is what you would get:

au·tism: A mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Growing up in the 1990s, things were very difficult for people with high-functioning autism or Asperger's.

The main reason for that is that people didn't really know what it was or how to cope with it. The diagnosis of autism has only existed since 1967.

Autistic children are often able to do whatever they set their mind to. An example of that would be my overnight success in ceasing to suck my thumb.

I did this by making an agreement with my mother. She would quit smoking and, in turn, I would stop sucking my thumb, which I did overnight.

'Lucky to have autism'

So in that way I am very lucky to have autism even though I didn't always see it that way.

Growing up in Winnipeg was very difficult because most of the tools I needed were not available to me unless they were paid for by my parents, who couldn't always afford it.

The main reason why is that I come from a middle-income family. We weren't poor enough to receive assistance/therapy (such as speech therapy) free of charge.

Once in school, I was passed over for people who had more severe disabilities.

I first realized I was different when I entered Grade 1. At the time, I didn't realize it was autism. All I knew was that there was something different about me.

I had a hard time making friends because I had difficulty reading people's verbal queues and body language. This made social interaction very difficult for me.

My main learning difficulties in school were reading and writing. I have always been very well-spoken, however, my grammar and spelling are lacking and what I have learned has been quite difficult.

TV shows made reading fun

When it comes to writing, my saviour is technology and has given me assistance in spelling and grammar.

One of the things that helped me want to learn to read was comic books, along with TV shows like Reading Rainbow and Wish Bone, which made reading fun. 

As I progressed through school, my social problems got worse, which then led to depression.

I felt isolated from my classmates, but at that point I had started to lose interest in trying to understand why people didn't understand me.

There was little to no help in the area of social development for autistic people. The good news is that there have been advancements in research on autism, which have led to a deeper understanding between autism and depression.

There are groups available for people with autism and agencies such as Asperger Manitoba, along with the Autism Society of Manitoba.

Both groups have been known to help parents understand and support their autistic children, as well as offer support groups for autistic adults and play groups for autistic children.

Autism 'not a death sentence or a curse'

Now as an adult, I find it quite difficult to have romantic relationships or maintain friendships, often because I get very absorbed with work or school. People I've known for years may forget or not understand those are the traits of autism. 

Holding down a job can be difficult because some employers think they understand what autism is, or how to treat someone with autism in the workplace.

People with autism can methodically plod through a task, but others mistake that for time-consuming laziness.

There have even been times where I did not mention in my interview that I have autism out of fear that it would be a deterrent from me being hired.

Employers still need to have more understanding, not just of autism, but of disabilities in general.

We have mandatory workplace safety education. Why not have mandatory workplace disability education workshops?

However, there seems to be an overwhelming fear towards people with autism.

It is not a death sentence or a curse. It will make life a little bit harder but there is still light.

'Optimistic about chances for successful life with autism'

Some very talented people have autism, like Susan Boyle, who was a finalist on Britain's Got Talent, or actress Daryl Hannah, who has had many roles including Morticia Addams from the Addams Family Reunion, Pris Stratton in Blade Runner and many more.

Gains are steadily being made for autistic people here in Manitoba and around the world.

Now, I am not going to tell you how to raise your kids; that's not my job. But I do feel I should put this out there: if there is a link to the measles vaccine and autism, I would still have wanted my parents to have a doctor give it to me.

There is a point in time where I would have said the opposite (preferring not to exist rather than live with autism) but being where I am today as someone in his early 20s, I feel optimistic about my chances for a successful life with autism.

As everyone's favourite star, Michael J. Fox from Back to the Future, once said: "If a child can't learn the way we teach, maybe we need to teach the way they learn."

I would like to thank you for taking time out of your day to read this, and hopefully you now have a better understanding of what it's like to live with autism.

Charles J. Sisetski is a Winnipegger with autism who is studying communications.


To encourage thoughtful and respectful conversations, first and last names will appear with each submission to CBC/Radio-Canada's online communities (except in children and youth-oriented communities). Pseudonyms will no longer be permitted.

By submitting a comment, you accept that CBC has the right to reproduce and publish that comment in whole or in part, in any manner CBC chooses. Please note that CBC does not endorse the opinions expressed in comments. Comments on this story are moderated according to our Submission Guidelines. Comments are welcome while open. We reserve the right to close comments at any time.