By Ronit Molko, Ph.D., BCBA-D
Are there autistic individuals in your life? Or are they people with autism? This is a critical distinction and a topic of debate in the autism community, one which recognizes that words matter and shape how we think.
Half a century ago, people with developmental disabilities were referred to using all kinds of pejorative terms. For many in the autism community, the sting of those dehumanizing terms lingers and informs their opinions on how they choose to identify themselves.
The debate happens between person-first language (people with autism) and identity-first language (autistic people). For many years, and especially in the professional and scientific communities, person-first language that acknowledges a person’s humanity first and their identity second is preferred and recommended.
The person-first preference is easy to understand. We are all people and individuals before we are our condition. Person-first language acknowledges that a person is not their condition. The condition is part of them but doesn’t define them.
But person-first language can feel cumbersome and stilted, and often offensive, especially to those at whom it is directed. And now, as we approach 25 years since the autism diagnosis became more prevalent and awareness began to increase, we have a large group of autistic adults to inform us about growing up with autism and how they see themselves in the world.
I have discussed this with many autistic individuals and their parents to better understand what this issue means to them. Many of these young adults, who often refer to themselves as self-advocates, describe that their autism is core to their identity and how they have known themselves since birth. Referring to them as a “person with autism” negates this. Many have said to me that using person-first language is designed to make me feel better, but actually dishonors who they are.
More to the point, autism is not an accusation, but a statement of fact. Autism is an inherent part of a person’s identity, just as gay, or Jewish, or female are. Before the general population can understand autism as a condition that bestows strengths as well as challenges, those in the autistic community must adopt this identity-first point of view and make their language reinforce that mindset.
In the 1960s, African Americans demanded to be described as “black,” as part of the Black Power movement. It was a point of pride, rather than a label of oppression that had scarred them for 200 years. People began chanting “Say it loud; I’m black and proud!” With this shift, blackness became and remains a core aspect of that community’s identity. Those activists restored power, and thus humanity, to “black” as an identifier.
Using the term “autistic person” or “autistic individual,” as I do in my written and oral presentations, affirms the value of the autistic identity. Individuals don’t have autism, the way they have the flu, they are autistic, a condition that describes the wiring of their brain and suggests the unique, complex and interesting individual they are.