Language of being autistic

Many, many, many years ago when I was in first year university, I took a linguistics course. Although I only took that one introductory course, it was easily my favourite and most challenging class. Not challenging because I didn’t do well, but challenging because it was new and thrilling. It forced me to think about some of my basic assumptions about things I had taken for granted.

One part of the course was about semantics and of course Noam Chomsky’s work figured prominently. Reading about his views and those of others on the topic has left me with one very important piece of knowledge: when someone says “it’s just semantics” to dismiss an argument they don’t have a clue what semantics is about.

Here is how wikipedia defines it: Linguistic semantics is the study of meaning that is used by humans to express themselves through language.

It’s just semantics becomes it’s just about the meaning which is clearly not what a large chunk of people think they mean.

We use words because, like all elements of communication, we agree they have a meaning. We may not agree that words mean the same to every speaker of a given language, but we can agree that words are used to convey meaning.

As the parent of children who have been diagnosed with an autism spectrum disorder I know that several words or terms are used to describe our kids. There is a lot of energy spent debating autistic vs. living with autism and autism vs. autism spectrum disorder.

I tend to use autistic most of the time. I have been told by one other parent of an asd kid that it is wrong to use the word “autistic.” I listened to her arguments, but I still say autistic.

I understand a lot of the reasons why some want to use “people first” language, but I accept that they apply to autism.

Recently, I have read some good posts supporting using autistic. This one by @ejwillingham led to a bit of tweeting on the weekend. Here’s the compelling part of her blog post to me:

Autism has been medicalized to the point that parents of autistic children find that anything but person-first language is offensive. Autism has been medicalized to the point that autistic people can read and hear words used to describe them that include “tragic,” “stolen,” “monster,” and “afflicted.” It has been medicalized to the point that when autistic people themselves choose to use the word “Autistic” as a noun, the response from non-autistics is almost one of sheer horror.

For most of my career as a fundraiser, I’ve worked with organizations connected to HIV/AIDS. If anything has made me aware of “person first” it is working in that context. The struggles of HIV/AIDS weren’t just about gaining recognition of the disease, how it was spread, who it affected and overcoming indifference/hostility. The struggles were also about language. We use “living with” because the person is not the disease or the disease does not define all that a person is. For the same reasons we refer less often as someone with diabetes as diabetic or more often we talk about someone who has overcome cancer as a survivor.

Autism is very different. Autism does affect how a person communicates with the world, views the world and interacts with others. Despite what some people may think, I don’t share the view that autism can be cured, so I don’t subscribe to using the language of diseases.

My oldest calls herself an aspie. The last time we spoke about using the word autistic, I think she called the argument dumb.

Similarly, I see many posts from people who are autistic who argue for using that word. I have yet to read one where someone on the spectrum prefers to say they are “living with autism.”

Autism is a very different diagnosis from cancer or some other disease. Many people on the spectrum use autistic to demonstrate that difference.

The difference to me is summed up when I say that people live with cats, they don’t live with autism. “Living with” is often about choice. No one chooses to live with autism.

All of my kids are very special to me and each is different. An important part of their uniqueness is that two are autistic and one is not. I would not try to deny their identity by suggesting they are just “living with” something, whether that is autism or neurotypical. In fact, cleansing the language denies an important part of their being.

And that is just semantics.

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