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.


19 thoughts on “Language of being autistic

  1. Totally agree! I always say my son is autistic… occasionally that he “has autism.” To say “my son is living with autism” feels as odd to me as saying “I’m living with blue eyes!”


    • I sometimes say my son is on the autism spectrum.

      I know what you mean about “living with blue eyes.” I will sometimes use the example of my hair colour when talking about why I say autistic. I am a redhead or I have red hair.


  2. I agree. I lived with cancer. I am autistic. The difference is striking. Cancer snuck up on me and tried to take away my life. Autism is woven into my being. It is not an interloper in my life. Although not the sole essence of my being, it is defining aspect nonetheless.


  3. Thanks, Bridget. You have a lot of insight on the debate. I live with a couple of chronic illnesses, but I never feel they define me. They may hold me back some days. With my kids, autism will always be a part of how they conquer the world and it will never be separated from them. That’s also true of my child who is not autistic.


  4. Thanks! I am trying to wade through this world of parenting an amazing (red headed – although he prefers to call it golden:) autistic kid and I don’t want to feel like I am doing him a disservice with my language. I am trying to clarify it for myself so we can soon help him have the language to talk about himself. He know he is “different” and doesn’t want to be weird. We just want him to have confidence. I love to think that autism is an aspect that helps to define the person, but does not control them – it is part of the package that makes each person unique. Thanks for the ideas.


    • Kirsten, I had no idea when my son was diagnosed that I would have to pay attention to how to describe one thing that makes him unique. First and foremost he is Daniel and he is my son. After that there are many things that I can say about him and being autistic is just one thing that makes him unique and amazing.


  5. When I talk about my son I usually say “has is autistic” or “he has autism”. I have never said he is “living with autism”. It sounds odd to me. I do not get caught up in worrying about what words I say because I love my son and know he loves me and when I look at him I see this complete person who’s autism is a beautiful part of who he is. It is totally integrated into his being but it is a part of him. He is also body, soul and spirit and possesses a uniqueness that is as it should be. I know it and I want the rest of the world to know it too.


  6. I’m with you on this topic. I know and appreciate the value of words but am really not hung up on the use of words in ‘autism world’. Really going to buck the trend now and tell you that I don’t use ‘neuro-typical’, but I don’t use ‘normal’ either. So I’m definitely filtering what I say.
    All my kids know they are a valued part of this family, but only one of them is on the spectrum – the redhead!


    • Thank you. I don’t like neurotypical, either, but saying normal doesn’t seem right. I admit it is a purely emotional response I have to saying normal, in part because of a liberal education and in part because I don’t want to make my daughter feel any less unique than her brother.


  7. Hi, I have promoted the use of “living with autism” but only as a more acceptable phrase for when people are described as “suffering from autism”. Autism is a part of my childrens’ lives but they aren’t in pain or dying or diseased. Usually I say they are on the spectrum or have AS. I do tend to lean toward person first when I can because my son has Asperger syndrome – the fact that he is my son is more important to me than his neurological difference.


    • Hi Trish. I had not even thought about “suffering from autism” when I was writing, but it is a really unpleasant term for me. My older daughter has Asperger’s and she calls herself an aspie sometimes. It is such a great way of owning the term.


  8. I absolutely agree. My children and I are autistic and while I respect others rights to define their world as they perceive it, I feel the ‘has autism’ way of explaining it feels almost like saying that one is tolerating or afflicted with autism. I’ve used both in explaining my children’s differences, though. Different situations call for different language, but I’ve found that the more that my husband and I put out an attitude of acceptance and respect in regards to autism the more others feel the same way. When they see us being happy and comfortable with autism in our lives the more others might see it as a positive, too.


    • Yes, I agree that different situations call for different language. In some cases I have noticed that people who are not familiar with autism often search for the words that they are comfortable with. If someone wants to use one term or another, I don’t want to make them stress about the language when they are clearly trying to understand something more about autism.


  9. What a wonderfully concise distillation of the many discussions you and I have had regarding this topic! As with so many other issues you and I are in agreement on this. I have a blog post drafted which touches on these issues – I’m sure it will end up being more verbose and saying a lot less but I’ll try finalizing it nonetheless. 🙂


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