Autism, you first?

The negative political ads that are sprouting up around my kids’ favorite TV shows make me wonder how correct is politically correct? I was recently accused of trying to impose PC language on others when I (in a very low-key manner or so I thought) corrected a loved one who said that a boy was “an autistic.” My primal instinct was to redirect her to the more person-first language of “the boy who has autism.” My loved one really hasn’t spoken to me or my primal instinct since.

Person-first or people-first language is the practice of using semantics to consciously promote the idea that we should first recognize the person and then the disability. For example instead referring to a kid as a “diabetic” you would say “a kid with diabetes” in people-first language. Likewise, instead of saying a person “is autistic” you would say a person has autism.The rationale behind this  practice is that it allows for the person with a disability to be considered for more than just his or her diagnosis. In the past, when I’ve heard others using people-first language, it’s been  music to my ears – mainly because I’d always felt that using this phrasing implies a more evolved way of thinking about disabilities.

While it can be grammatically correct to use the word “autistic” it still grates on my ears.  About a year ago, Mac and I were at a conference filled with autism experts and educators. The keynote speaker for the conference was the state’s superintendent of schools who I assume is a person supportive of the ASD community as evidenced by her attendance at said conference,  made what seemed like a major faux pas by addressing all of the wonderful “autistic teachers” from her state.  Mac and I stifled our giggles when we saw the discomfort the superintendent’s comments brought to the faces of the experts on the stage behind her. I may have even stage-whispered sort of shouted something to the effect of “Good! At least we know our kids have jobs waiting for them as teachers in this state!” or something equally snide.  I felt pretty smug in my knowledge that I knew the more correct way – grammatically and politically – to describe the teachers of children with autism.

And then I came across this: This essay by Jim Sinclair isn’t new, but it was new to me. It was definitely an eye-opener. It made me think about how we discriminate between autism and personality. Are all of the bad traits attributed to autism and the good traits to personality? I’ve started wondering how mindful I have been of the boys’ ways of thinking. Do they see themselves as separate from their autism? Do they see all of the grammatical awkwardness (really, people-first language can be cumbersome and redundant) that I’ve imposed on everyone as evidence of a message from me, albeit unintentionally, that says  “I love you. You’re perfect. Now change!” ?

Sure, you could dismiss this whole issue as a matter of semantics. But let’s face it, words matter -especially to parents of kids on the spectrum. How many other parents do you know that count every word that they’ve ever heard their child say? How many other parents know what “mean length utterance” is?  Who else lives and dies by the communication notebook from school? Reports of new word combinations used to mean an evening of celebrations. “No new words to report” led to  a night of near depression for me. To think that how we speak about our kids (& how we allow others to speak of them) is a luxury kind of challenges one of those pieces of wisdom that probably came needle-pointed on a pillow :  while actions speak louder than words, we use words to inspire action.

The argument against people-first language is not unique to the world of ASD.  C. Edward Vaughn wrote an article for the National Federation for the Blind entitled, “People-First Language: An Unholy Crusade.” Ouch. Talk about a name saying it all (actually the name doesn’t say it all – read the article to learn Mr. Vaughn’s well-worded argument). Wikipedia also notes that people-first language is rejected by many “deaf and autistic people.” So perhaps the politically correct stance is to go with the preferences of the individual who has the disability. Unfortunately when writing on a more global scale -like, I don’t know a blog maybe? – this rule doesn’t provide much in the way of guidance. Cheese reserves the right to write in people-first language & the right to change without advance warning…like a garbage truck backing up without beeping.

 Of course I’m going to need years of behavior modification to overcome my instinct to use people-first language. Does anyone know a good BCBA for that?  

– the cheese

cheese first, people second