Let’s Talk About Language and Autism

By Brenda Dater
Blog Post

AANE launched its new website this week. As we edited our new content, one question repeatedly brought us to a dead stop: “What word do we use to describe people in our community?”

I went to graduate school 25 years ago. From the first day of class, social work professors drilled person-first terminology into everything I wrote. The intention behind this approach was to see the person first and the disability second. We were taught to say, “person with autism,” instead of “autistic person.” But many autistic people prefer identity-first language. They would describe themselves as an “autistic person,” not a “person with autism.”

Person-first language has had some unintended consequences. For some, it implied a negative value to disability. We don’t use person first language when traits are highly valued. For example, we don’t say, “Person with intelligence,” we say, “She’s an intelligent person.” We don’t say, “Person with charm,” we say, “He’s so charming!”

Identity-first language makes it clear that autism is integral to a person’s identity. As one autistic adult told me, “I can’t remove my autism—it’s who I am and how I think.” For her, identity-first language makes sense.

And person-first and identity-first language aren’t the only options. I’m a social worker and the mom of a 20-year-old young man who was diagnosed with Asperger Syndrome when he was three. When I ask him his thoughts on language, he shrugs, looks at our sleeping King Charles Cavalier spaniel and replies with a smile, “As long as I have a dog near me, you can call me whatever you want.”  To him, the actual word we use to describe autism isn’t that important. Sometimes he says he “has Asperger’s.” Other times he’ll say he’s, “on the autism spectrum.” He may feel differently about it later on, and I’ll use whatever language he wants me to.

At AANE, we want you to decide what language feels right for you. Even after many hours talking with adults, parents, partners, and professionals, there is no one word or phrase that works for everyone. We feel that it is important to keep in mind that diagnostic designations are simplified tools used to describe differences that are complex, fluid, textured, and difficult to pin down with a single term.

With the launch of our new website, you’ll see the term “Asperger profiles,” on most pages. There is no perfect solution to match everyone’s language preference.  But it’s important to all of us at AANE that each and every one of you feels validated and respected.

So join the discussion. We’d love to hear from you. And remember—you are not alone!

Brenda Dater is the Associate Director at AANE and author of Parenting without Panic.