Autism Awareness: Person-First Language

April is Autism Awareness Month. There are many activities centered around raising awareness and funds, both locally and far away. I hope, though, that those who watch or participate are able to see the scope of our efforts as being about more than a diagnosis, but instead, as being about people who are uniquely gifted and have so much to offer our society!

If you’re familiar with my Social Response Pyramid(TM), you know that according to this model, everyone has his or her own starting point when responding to input. This unique starting point is comprised of what the individual knows, feels, expects, believes, remembers, etc. The immediate individual context (MY CONTEXT) is a combination of interests, abilities, challenges, learning style, memories, past experiences, personality, birth order, ability to integrate sensory input, and medical, physical, or emotional differences or diagnoses, including an autism spectrum disorder.

Each pyramid represents a unique person. For example, a person may be tall, of average build, with dark hair, enjoy sports, have experience working with computers, be somewhat shy and quiet, a bit of a perfectionist, AND have autism.

At one time, I believed strongly in the need to identify such a person as a person with autism, NOT an “autistic person.” I feel sad when I hear parents or teachers say that they have “normal children” and “autistic children,” implying that one is better than another. Over the last many years, society has been working to emphasize that first and foremost, an individual is a child (or teenager, adult, or person), and secondarily, the individual has a condition that some view as a disability.

At one point, I became aware that not everyone agrees with the push toward person-first language as it relates to those diagnosed with ASD (autism spectrum disorder). In fact, there are many such people who argue strongly for the consistent use of the term “autistic” to describe themselves, as opposed to referring to them as people with autism. (This appears to be similar to the movement toward “Aspie” as a designation for individuals with Asperger Syndrome). Like me, they believe that autism is an intricate part of who they are; that it cannot be separated out as distinct from who they are as people. But they argue that the rest of us are simply trying to be politically correct in calling them “people with autism.”

I applaud the desire of these “autistics” to educate people as to their uniqueness and individuality, and their eagerness to embrace the characteristics which identify them as being on the spectrum.

The problem is, we live in a world where autism still isn’t generally accepted as unique and positive, and so using the term “autistic child” can be misconstrued and misapplied to other diagnoses by people who are NOT sensitive to the nuances of these terms. In other words, we should not endeavor to set an example for people who might again begin using terms such as “Down Syndrome child,” “diabetic child,” or even, viewed negatively, “autistic child,” losing the ground we’ve gained in promoting their personhood before examining the issues that they may face. We also cannot assume that everyone with ASD feels the same way, and would choose to be known as an “autistic person.”

It’s interesting to reflect on this issue. I’m aware that I’m resistant to the term “autistic” because I feel that it singles out those with ASD as being different from everyone else, rather than first acknowledging their similarities to other people. But the research I’ve done indicates that those who wish to be known as autistics WANT to be different from others; they do not want to be compared to other people, but instead wish to be known by their unique designation.

Over the years, my personal stance on this subject has been consistent with my desire to promote social understanding. I now acknowledge BOTH sides of the issue—and the rationale behind each side. From there, I think it should be up to an individual whether he or she prefers to be knows as an “autistic,” or as a “person with autism.” For those who prefer not to be connected officially—in any way—to the term autism, I’ll write more on that topic next week!

Thank you to all of you who are working to promote social understanding! I continue to learn from you, and am a better person because of it!