Controversy #5: "autistic" vs. "has autism"

One of the first things I read after Elias was diagnosed was a quote by Ellen Notbohm that read something like "your child is more than his/her autism, do not define them by this one characteristic. You wouldn't call a child with cancer "cancerous," why call your child autistic?" This made sense to me, particularly since I was in the very nascent stages of trying to understand the diagnosis and thinking about calling Elias "autistic" was enough to have me swimming in a pool of tears. "Autistic" seemed like I was shackling him with this diagnosis; "has autism" seemed more like something that could eventually be discarded or cured. Of course, there is no proven cure for autism, though a small minority of children eventually shed their diagnosis.

It seems that my struggle with calling Elias autistic is typical of the dichotomy between parents of autistic children and autistic adults. Autistic adults routinely prefer to be referred to as autistic, whereas parents of autistic children want their children to be referred to as "my son Johnny who has autism." The Autistic Self-Advocacy Network (ASAN) has an informative post about what they call "Identity-First Language" as opposed to "Person-First Language." From the post:

 In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity (emphasis mine) — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.

Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as “people with cancer” or “people who have cancer,” as opposed to “cancerous people,” the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person’s identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

While it was difficult when he was first diagnosed to refer to him as "autistic," as time passes and I reflect on it further, it is getting easier to say that "my son is autistic." However, I don't like labeling him or anyone else, though I understand that there is sometimes a need to do so. I will be happy when he is able to tell me how he would like to refer to himself and I will be happy to use that term. But until that blessed day, I'm going to refer to him as "autistic" as little as possible -- not because of the word but because I don't want his neurology to be the first and maybe only way that people see him.