He has autism.
He is autistic.
The language of autism is something that I have struggled to wrap my brain around for a while now. I read one well-written blog and I start to think one way but then another well-written blog gives me something else to think about. My initial reaction has been to say that autism is something that my son has rather than something he is. In fact, I’ve always said that Caden has a great smile, gorgeous blue eyes, a quirky sense of humor, and autism as an example.
More recently though I started to wonder if the language choice was engrained in me because of my academic background. I teach people how to be effective communicators both in written and oral communication. In my discipline, we teach our students to be people-centered and that language creates reality. Therefore, if I talk about Caden as being autistic, then I am defining him by his autism rather than stipulating that autism is but one of his many components.
But does the word choice really matter? I read another really well-written blog last week that made me again start to question whether it was simply semantics. Does it matter whether I say Caden has autism or if I say Caden is autistic? The second doesn’t flow easily from my mouth, but again I wondered if it was my sociological and communication background and more habit than anything else. I started to wonder if I could actually use autistic in every day conversation or maybe even in lectures that I give both on and off campus. I even thought about a research study to examine people’s perceptions and language choices to try to find the real answer to this question.
Then yesterday happened…
One of the primary reasons that we worked so hard to get Elf was because we knew he would be trained to track Caden. When he panics or becomes overwhelmed, he hides. Unfortunately, hiding often involves bolting and said bolting has happened in stores as well as parking lots. Elf is awesome at what he does; the dog loves to track or more aptly he loves the hotdogs that come after a successful track. In many situation such as indoor tracks, open field tracks, and forest tracks he is really good at what he does. We are still learning together how to navigate subdivisions though where neighbors don’t appreciate you cutting through their yards to chase the scent or how to cross intersections without either of us getting hit by a car. We practice several times a week and we always will so that we can depend on Elf to find his boy. BUT we have started to wonder if we need another safety net for Caden. Although the times are limited, there are instances where we might not have Elf with us. The zoo or a nature reserve quickly come to mind as environments where Elf’s presence could be a disturbance to the animals who live there (although the law would technically allow us to take him those places). Other times we might not be there to handle Elf through the track such as at school. So we’ve started considering Project LifeSaver through a local sheriff’s office.
You are thinking that I have gotten way off topic aren’t you? We’re almost to my point (hopefully)!
Ryley made a casual statement to me that was anything but casual about how important it must be to Dan and I not to lose Caden given that he has a service dog and possibly a special bracelet. What she really wanted to know was if we would be as upset to lose her. We had a long talk about the differences of being verbal and nonverbal if you get lost and how she has an equally cool tracking device called a cell phone. In the end a potential crisis was averted but it helped me get a new perspective on the question I started with.
Does it matter if I say Caden has autism or that he is autistic? For me Caden has autism because autism is something that causes our family discomfort, inequality, and even pain from time to time. Both of my kids have immune deficiencies which mean if someone gets sick, everyone is getting sick. In other words they have something that affects us all. Caden’s autism is like that in our family. Sometimes melt downs are annoying inconveniences that only cost family members some time out of their day, but other times they signal a sensory overload that means we have to leave a festival sooner than planned, or that we can’t attend a fireworks show, or that we significantly alter plans in such a way to help reduce his anxiety or discomfort. I can’t let Caden be the cause of that discomfort, inequality, or pain for his sister, my husband, or I. To me autism isn’t who Caden is; I can’t think of Caden that way because as far as I am concerned he is absolutely and completely perfect. He however has a condition that makes life difficult and that difficulty sometimes spills over and affects the rest of us.
So for me the answer is: he has autism. That’s the perspective that is best for me. It doesn’t mean that it is the perspective that has to be best for others. I think this is one of those I’ll respect your decision if you respect my decision kind of things just like we agree to do with ABA, vaccines, holistic therapies, and medications to name a few…or at least we should agree to do.