What it’s like living with autism as a young adult in 2018

In this first post for Speakable, Montreal writer Mat Vaillancourt describes the differences between people on the spectrum and how to navigate life as a young adult with autism.

I have autism.

I was diagnosed in 2002, in an era when few resources were available for autistic Canadians, before the issue began receiving significant attention in media and politics. Even with all the new research coming out, we still know relatively little about the mechanics of autism. A lot of money is now being invested in research to find a path to answering these questions.

It’s estimated that about 1% of people across the western world have Autism Spectrum Disorder (ASD). The community has reached a critical mass; there are now organized lobbies for people with autism, and their impact can be seen directly and indirectly in the public sphere.

I am close to my thirties now and resources did not exist when I was a kid. Especially compared to those available today, it was a terra incognita for autism resources in Canada in the 1990’s and early 2000’s.

The first thing about autism that I cannot stress enough is that everyone has a different story, and every individual with autism falls at varying degrees of severity on the spectrum. A minority of people with autism can go to university and receive a degree like I did, but many have difficulty completing even basic tasks in their everyday lives; even speaking and eating for some may require continuous care.

But being highly-functioning with autism can also create problems because you are more aware of your limitations and challenges. This can lead to an array mental health challenges, and may contribute to higher depression and suicide rates among people with high-functioning autism.

There is, however, one similarity that almost everyone with autism has in common: They are excellent at certain skills but really bad at others, and these skills can differ across each individual. It can sometimes be very difficult to identify these talents because they are hidden or undiscovered even by the individuals with autism themselves.

In my early childhood, growing up in Quebec in the 1990’s, the services offered to my family were absolutely horrible. There was a sense that the symptoms of my condition were all present by the age of four or five, but they were attributed either to my extreme prematurity as a baby or some other neurological condition, like dyspraxia.

Diagnosing back in the mid-to-late 1990’s should not have been an impossible feat but resources and specialists seemed to lack competence, or were even clueless about what I was going through. I remember in 2002 when I first took the test to see if I had high-functioning autism, I said “yes” to the vast majority of questions describing the symptoms of my condition. This is a good example of how misinformed medical specialists can create a lot of pain in people if they neglect to read the most recent literature in the field.

I remember a well-known specialist saying to me at five that I would be unable to pass Grade 1. This was frankly ironic because from grade 1 through to university, I always performed above average academically. This is a good example of why it could be dangerous to assume limitations and predict outcomes of someone with autism based on books, charts or any instant, magic recipe.

It’s undeniable that therapies geared toward helping young children with autism is significantly better these days than 20 or 25 years ago, when I was a child. But one mistake some professionals continue making is to make judgements or lower the expectations of children simply due to the label placed upon them.

It is unproductive to place limits on anybody and on people with autism just because they have the disorder. We are all so different. Autism is not the same as having a broken leg or a common cold where you can apply a standard quick-fix solution, applicable across the board.

There are sadly no quick fixes to help children with autism lead a better life. What we can do is, collectively, commit to providing them with access to the resources, therapies and other services they need to find their voices and aim to be the best and most productive citizens they can be.

Mental health is a common challenge for people with autism and many take medications. Professionals involved in their care must not overlook these challenges.

When interacting with individuals with a disorder such as autism, try your best not to judge them and make assumptions about their capabilities, strengths and weakness. One moment you may see awkwardness and challenges, and in the next, they may surprise you with extraordinary insight. Having an open mind is the most effective way to build relationships with people on the spectrum.

And the best thing about working with children or adults with autism? You can learn a lot from us. We are usually very tenacious and dedicated people, and working with us can be quite a rewarding experience.

 

Mat is an Ottawa-based writer who has contributed to Quillette.com, Spectator, Ottawa Citizen, Wall Street Journal, La Presse, and other publications. He can be reached at matvail2002@gmail.com.

 

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