When our words intended to help actually end up hurting…

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.

 

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5 thoughts on “When our words intended to help actually end up hurting…

  1. You know, when you first commented on my blog on this topic, I was quite startled by the idea that anyone with a disability *would* choose to eschew people-first language. Having read through the link you included, I throw my hands up, helpless to say there actually is a “right” and a “wrong” way to talk about it. The primary point of saying “autistic,” from an autistic person’s POV, is that autism isn’t something that can be cured; it’s something that colors and even directs a person’s entire existence–they “wouldn’t be themselves without it.” And that is true of Down syndrome as well, even though we’ve chosen to embrace the idea that the personhood outranks the extra chromosome. I honestly don’t know how to wrestle this issue into a single answer. Perhaps it doesn’t have one.

    I think one point made (in your post? Judy’s?) bears repeating: that the question of language is really about the way other people talk about the person, not the way the person refers him or herself. For our part, we’ve just gotten so tired of people filtering out everything about individuals who have an extra chromosome except the extra chromosome itself. It’s like nothing else matters. As if people are trying to shove all T21 into a box so they don’t have to deal with the complexity of it, the way they deal with typically-developing people. That’s why we’ve gotten so passionate about it.

    In any case, thanks so much for expanding my horizons!

    • I agree about the lumping together for sure. Last week we had 2 two-hour delays due to the weather and a friend of mine whose son has autism had a facebook status that said, “All these delays are making all the kids with autism crazy and us moms too.” Well, in my house, I was the only one going crazy! Shelby could have cared less. So, it’s even crazier when parents do it, albeit unintentionally but still, it’s one thing to say the delay is making your kid out of his mine but it’s such a broad statement! I use person-first language with Shelby, obviously she can’t tell me her preference, if she even has one. It’s a dialogue that I’m sure most of us never thought was necessary but after, reading Judy’s piece and much of her other work, I can see it is a necessity for a lot of people.

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  3. Food for thought. My son is autistic, or is he a person with autism? Sometimes it matters that autism is part of who he is; other times it doesn’t. The language thing has never been at all important to me. I’m more interested in how it affects what is going on at the moment. In the reading class, the fact that “Johnny” has dyslexia is important;; on the playground it isn’t. Autism does affect my son’ life at every turn, and it is an integral part of who he is (though I’d love to see who he’d be without it). However, unless it is relevant to a particular situation, I don’t mention it. My son is at Mass right now, and like most 21 year olds who go to Mass, he drove himself there. I needed an errand run near the church he attends (he decided he’d rather go there than to our parish) so I asked my son (not my autistic son or my son with autism) to run the errand. Tomorrow my son, who doesn’t have a job (autism makes finding one hard) will stay home from a job training program to sit with my daughter (who is not autistic) because she doesn’t have school.

  4. RAnn thinks the way I do. It’s all in the context. Everybody is in some kind of context all the time. My mom was the mother of five kids. But she was mom. She was artistic. She was musically talented. How should I think of my mom? She was mom, a person God made. Later, the essential familial tremor debilitated her. I didn’t think of her as the lady who had dementia and couldn’t feed herself. She was mom. A child of God. Loved by Him, her husband, and kids. Conditions may affect our functioning and contribute to how we express who we are, but who we are is, we are one of God’s children He made out of love and put us here for His purpose.

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