Please, no more Londons, Issys, Alexs, Gerhards

Trigger warning: child abuse, child murder, disabled abuse, Nazi genocide, euthanasia, ablest language

Another autistic child killed by a parent. A lot of people I follow on the interwebs will say this is about lack of services or a parent pushed too far.

I think it’s about the same things that led white men to lynch men of colour, led men to batter their wives to death, led George Zimmerman to shoot Trayvon Martin and on and on, ad infinitum. Someone thought their lives mattered more than someone else’s.

I wrote that on Facebook the other night.

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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.

Citizenship & Immigration decides another asd kid is only a burden

A headline in today’s Toronto Star is another reminder of how some people see kids on the autism spectrum:

Immigration says son with Asperger’s ‘inadmissible’ to Canada

Last week a similar story about the Maeng family in New Brunswick was more dire. They were going to be deported after living and working in Canada for 8 years. All because CIC decided their 14 year old son would be a burden on the health and social networks. Thankfully, the New Brunswick government communicated to the federal government that they do not see a burden when it comes to kids on the spectrum.

I can understand completely that a bureaucrat having to make a decision about who stays in Canada or who goes, who becomes a citizen and who doesn’t, is all a matter of looking at the rules. It is easy to blame the people who make decisions like this, but it is not where the blame should be placed.

This is about how autistic and aspie kids are viewed. Our society sees the repetitive gestures, the speech challenges, the lack of eye contact, the awkward social interactions. We may also believe that they can be sometimes adorable, sometimes chaotic characters like we see in movies or on tv.

Somewhere we lose the ability beyond April and Autism Awareness Month or Day to influence how politicians and senior bureaucrats will view the contributions of kids like mine.

If we need any proof that politicians don’t all get that our kids have potential, we only need to look back the to recent federal election where a re-elected government member called parents of asd kids a special interest. I didn’t even know any one still used that term, but I am horrified that someone who believes that was elected for any post in this country.

My argument is that political leaders at all levels fail to enact policies that value people with autism. Whether it’s Citizenship & Immigration at the national level or uneven and lengthening wait times for kids to get IBI in the province of Ontario, it is a horrible message that is being given to Canadians about our kids.