How We Talk About Autism is Evolving

Language matters. It conveys powerful messages that help define, influence and change attitudes and how we look at others. Yet language choices and preferences around autism can be confusing and are changing.

For us parents and caregivers, is it correct to say:

• My autistic child?
• My child has autism?
• My child lives with autism?
• My child is autistic?

I wish I could tell you there is a simple answer, but there isn’t. Individual preferences within the autism community vary, although there is a growing movement to use identity-first language (“autistic person”) rather than person-first language (“person with autism”). Identity-first language puts the “autism” first, while person-first language puts the “person” first. Let me explain.

Identity-first versus Person-first Language

We know that autism is neurodevelopmental, defined by differences in brain functioning. It is not a mental illness, intellectual disability or behaviour disorder. As Dr. Stephen Shore said years ago, “If you’ve met one person with autism, you’ve met one person with autism.”

Every individual, neurodivergent or not, has different behaviours, experiences, strengths and deficits that make up their identities. One can be a gifted communicator with difficulty with organization and time management. One can alternatively face significant challenges with communication while being a talented mathematician.

We also know there are many ways to communicate and interact beyond talking and writing. Think about how babies let you know what they need or how visitors who don’t speak our language make themselves understood.

This is why many autistic people prefer identity-first language. They view autism as a fundamental part of their identity and a positive identifier that affirms and validates it. I recently asked my son Andrew for his views. He said, “Mom, my autism is part of me and I’m a proud autistic person.” He prefers identity-first language.

Others prefer person-first language. They believe that terminology such as “an individual with autism” emphasizes the person before their autism, focusing on the individual as a whole. One adult recently told me, “Just like I am a person with brown eyes, I am a person with autism. I don’t want my identity tied to my autism.”

Regardless of preference, advocates on both sides are united in avoiding language insinuating that someone is “suffering” from autism.

Medical versus Social Models

For many years, clinicians and researchers used a medical model around autism. This model focuses on autism as an impairment, bringing a clear negative connotation. A social model, on the other hand, turns this around and believes that societal attitudes largely cause difficulties.

In line with this shift to the social model, identity-first language espouses that one should not classify autistic behaviours according to societal norms of daily functioning.

Autism Speaks Canada’s website recommends the following language guide, which is updated annually:

Don’t Use: High functioning, Low functioning, Mild, Severe. Instead, describe the specific support needs (i.e., extensive, varying, unique).

Reason: It recognizes that a person may struggle in one area but have strengths in others. Their functioning and support needs may vary.

Don’t Use: Suffers from, Affected by, Impacted by, Living with, Touched by. Instead, use Autistic, Autistic person.

Reason: It recognizes that autism is a key part of one’s identity, with no negative connotations.

Don’t Use: Non-verbal. Instead, use Non-speaking.

Reason: It recognizes that there are many ways to communicate.

How we think about autism and the language we use are evolving. Of course, many families struggle with their child’s symptoms and behaviours and find that autism presents significant challenges as a disorder.

There are other families, however, who view their child’s autism in a different light. The mother of a ten-year-old recently told me, “Alexander has so many talents and strengths. Of course, he needs a lot of help. And many people don’t understand. But he thinks differently than others, and we don’t see this as a problem.”

Ultimately, when it comes to language, I believe in letting autism self-advocates lead the way. I adhere to the community’s preferences while equally respecting individual choices. The Autism Speaks website says it best: They use both person-first and identity-first language “because a defining goal of our inclusion movement is total acceptance of autistic people, not merely awareness, and that means accepting both the person and their identity in equal measure.”

What language are you most comfortable using?

Author:

Jan Stewart is a highly regarded mental health and neurodiversity advocate and Chair of Kerry’s Place Autism Services, Canada’s largest autism services provider. Her brutally honest memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness describes her emotional roller coaster story parenting two children with multiple mental health and neurodevelopmental disorders.