Why I’m Not Living with Autism

The importance of language when it comes to disabilities.

Language is powerful.

The phrasing that we use is constantly changing and evolving. Even subtle changes, additions or omissions of words, can convey huge differences in meaning.

While studying for my Anthropology degree, I chose to focus my studies on disability and neurodiversity. Being Autistic, I found that reading professional literature on my disability helped me gain a better understanding of how the academic world understood and represented autism.

One of the first things I noticed was the complete lack of the word I chose to describe myself — Autistic.

Phrasing such as “person with autism” and “person living with autism” dominated scholarly discussions of neurodiversity. Many journals mandate the use of person-first language. This is the language promoted to students of the social sciences and social work, and preferred by professionals in disability fields.

Person-first language is used with the intention of putting the person before the disability. I’ve been told that I am more than my autism, and therefore shouldn’t label myself as an Autistic person.

This felt like a punch straight to the gut. But I couldn’t figure out why. The intentions were entirely pure, but it felt wrong to hear.

I was being told to value myself, and cast aside part of my identity within the same breath.

Person-first language comes from an era when autism carried purely negative connotations. Where it was an insult, a curse. People hear me call myself Autistic, and it comes across as derogatory, because in their mind autism is inherently bad.

In their minds, people “suffer from autism”. They “live with autism” in the same way that individuals “live with” diseases, like cancer or diabetes.

Autism isn’t a disease. It’s part of my neurology, how my brain is wired. It impacts my life in different ways, both good and bad. It influences everything I do. I am Autistic, just as I am Canadian, tall, and part-Jewish. There is no version of me, no person, that exists outside of my autism.

Supporters of person-first language want you to see the individual before the autism. But that individual doesn’t exist. There is no visible line you can cut away at to separate me from my disability. It’s woven into every inch of my existence, a fundamental part of who I am.

I don’t want you to see me without seeing my autism, because then you aren’t really seeing me.

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