As Shelby’s mom, I was coached to the point of becoming militant about “person-first” language. So, it was a loud smack into reality the first time an adult told me he wanted to be referred to as “autistic.” And this is true of many adults diagnosed with autism spectrum disorders.
Kathleen Basi, mother of Julianna, her daughter with Down Syndrome, wrote a very sensitive and excellent post with background on person-first language. It highlights why person-first language is the dominant and driving force in writings and in how we refer to those with disabilities today. Her post in an excellent illustration of the good person-first language has done for many with any variety of disabilities.
And from the otherside, today I read a post by Judy Endow, an autistic adult and writer, about a conversation she had on LinkedIN with a neurotypical doctor and how it played out. Interesting to me was that Endow, despite giving tons of evidence from other writers as to their preference to be referred to as autistic (she links to several more articles that also defend use of this term), very carefully, she addresses the challenge of those who are, like Shelby, non-verbal or have limited verbal ability. She says adamantly that she does not speak for anyone but herself and wishes to make known that her preference is a common one but it does not pre-suppose that every individual diagnosed on the autism spectrum would feel similarly. And she certainly cannot speak for those unable to speak.
Person-first language came from a good place, but it also originated in a time when disorders like autism were not as prevalent as they are today. In regards to autism, I have long held that “person first language” is more for the parent than the child in most cases. And it’s use persists in large part because of the limited verbal ability of those considered “severe” or “lower functioning” on the spectrum. However, the increase in high functioning individuals and their ability to articulate a preference must be considered and respected by parents, teachers, clinicians and yes, academics. Although controversial (as is the choice by some confined to wheel-chairs to be called “crippled”) many of these individuals want to be called autistic and do not want to be described as a “person with autism.” The analogy given most often (and given by one of the bloggers Judy Endow links to) is to cancer. A “person with cancer” is a person with a disease, something undesirable, something to be eradicated. However, autism, for these individuals, is seen as being an essential part to who they are. In fact, they contend, they wouldn’t be themselves without it.
And I get that. I really get that. Shelby, we have always contended, is perfect just the way God made her. And God made her with autism. It makes her life different, for sure. And sometimes difficult. But, and this is a big but, isn’t that how it is for all of us in one way or another?
And taking into consideration that there are some adults who want to be referred to as “Aspies” or as a “person with autism,” what do we do? Well, it’s simple. For those with communication skills and verbal ability to tell us, we ask them. “How would you prefer we refer to autism as it pertains to your life?” Or more to the point, “Would you prefer we use the term “autistic” or “person with autism.” Done and done. You’ve put the ball in the person’s court and you’re showing you respect their decisions. And that is what we should be teaching parents of the newly diagnosed. We should explain to them the reasoning behind “person first language” but also explain that, to some individuals, it is perceived as hurtful and even demeaning and in those cases, we must be kind and respectful and make the appropriate adjustments.
And I can tell you the one thing you absolutely do not EVER do: tell the person that they are wrong and “this is why.” We may have retrain our brains, but would you ever, ever dream of telling a person with blue eyes that he or she must only be referred to as “a girl with blue eyes” or “a blue-eyed girl.” And for those asking to be referred to as autistic, that is exactly what they hear often. They find autism to be a part of their lives as much as having a certain eye color or hand dominance. And we do belittle that person when we insist they use our preferred language in reference to themselves.
Words matter, and can hurt, but not always in the way we think and yes, it all boils down to one thing, respect for the individual.
The conversations that Judy Endow and others are having about this issue surrounding the language we use in reference to autism is more than just “autistic” vs “person with autism.” It is opening up a larger dialogue about how we can best respect and help those diagnosed with autism spectrum disorder. How we can come to more understanding from both sides.