Why does the language we use to talk about autism matter?

In 1997, when I was four years old, doctors at Sunny Hill Hospital gave me the diagnosis “high-functioning autism, as well as having traits of Asperger’s.” Like many people on the spectrum who were diagnosed at that time, I spent most of my life identifying that way. Since becoming AutismBC’s Program Ambassador back in August, I’ve discovered just how much diagnostic language has changed in the twenty-four years since I first received my autism diagnosis.

The DSM-5 (Diagnostical & Statistical Manual 5) is used by professionals in North America to inform a diagnosis. It was updated to its fifth edition in 2013. A diagnosis of ASD (Autism Spectrum Disorder) now includes several conditions previously diagnosed separately: Autistic Disorder (Classic Autism), PDD-NOS (Pervasive Developmental Disorder, not otherwise specified), Childhood Disintegrative Disorder, and Asperger Syndrome. These diagnoses are now all called Autism Spectrum Disorder.

“We can be aware of a person’s challenges and acknowledge their strengths without the use of dehumanizing labels.”

We have also moved away from using labels like “high functioning” and “low functioning.” Labels can cause a lack of respect for the individuals who struggle, minimize a person’s support needs and abilities, or make it more difficult for them to access the support they need. Labelling a person as low functioning implies they are somehow “less than” and puts focus only on what they are unable to do. Labelling a person as high functioning creates the idea a person may face little to no challenges and therefore does not require any support. We can be aware of a person’s challenges and acknowledge their strengths without the use of dehumanizing labels.

I’m a big believer in using respectful, inclusive language. I agree with the saying “words matter.” I believe the way people of all diverse abilities choose to identify should be honoured. At first, it was difficult to process that my choice of words and how I had personally identified for so many years could, however unintentionally, offend or seem to place myself above others. It was a wake-up call to the fact that inclusive and respectful language can change over time. Different people find different, more positive ways to identify themselves and it’s our job as a society to roll with it. When you’re unsure of how to identify someone on the spectrum, just ask: “when identifying yourself, do you prefer person-first or autism/identity-first language?”

“I’m a big believer in using respectful, inclusive language. I agree with the saying “words matter.””

In my work with AutismBC and other community organizations, I’ve had many conversations with people on the autism spectrum about what inclusive, identifying language to use. There are many people with different views on what language should and shouldn’t be used.   

Some people on the autism spectrum prefer the use of person-first language (PFL): person on the autism spectrum. Person-first language acknowledges an individual before their diverse abilities. Many people, including myself, feel this is a positive way of identifying because it emphasizes that our autism doesn’t define who we are as people.

Other people on the autism spectrum feel that autism is an integral part of who they are and feel that using person-first language denies a part of themselves. They embrace autism as being fully intertwined in who they are and not something they can be separated from. These individuals choose to use Identity-first (inclusive) language (IFL): Autistic person.

When I do an interview for AutismBC Talks or for an AutismBC Connects blog piece, I always ask “do you prefer person first, identity-first language, or something else?” I then try my best to respect their choice and stick with that preference throughout our conversation. When you’re unsure how to identify someone on the autism spectrum, just ask, and be mindful of their choice. 

With all this in mind, I’ve learned to be flexible and sensitive to how others on the spectrum choose to identify. Obviously, there are some words referring to autistic people as well as individuals with other diverse abilities that are completely offensive and unacceptable. Thankfully, from what I’ve seen over my lifetime so far, many people in our communities have learned to stop using these words. Although people are responsible for their own choice of words, I think it’s important to continue showing how the use of discriminatory language causes harm and that words matter. We should all respect each other’s choices no matter how we choose to identify, allowing every autistic person to speak for themselves. I believe that all of us, regardless of whether we’re on the spectrum or not, can work together to create a more inclusive, respectful community for everyone. We just have to be willing to make the effort, listen to each other, and keep an open mind!

“We should all respect each other’s choices no matter how we choose to identify, allowing every autistic person to speak for themselves.”

Additional Resources 

Disabled Person or Person with a Disability? 

Stigma Free Glossary – includes Mental Health/Mental Illness, Diversability/Disability and Inclusion and LGBTQIA2S+ Guides.