What’s in a name? A lot it would seem. Especially when referring to a community of people. A community has the right to decide how they want people to refer to them. Therefore the debate about whether to refer to someone as “autistic” or to say they “have autism” is relevant.
When I first created this website and was considering domain names, I wanted something that was easy to find. “My Child Has Autism” seemed an obvious choice. It did what it said on the tin. There was no ambiguity about it. Therefore I never assumed that there was anything wrong with the title of my page. But the more time I spent with the autistic community, the more I learned that many people place a great importance on how we refer to autism.
Interestingly, I’d made a similar mistake with a previous website. I’d referred to autism as ASD, which was the term that the medical profession used when diagnosing my child. However, upon talking with members of the autistic community, I learned that ASD can be considered a derogatory term, as the “D” stands for “disorder.” Nowadays the medical profession tends to use the term ASC or “Autism Spectrum Condition” when referring to autism.
So…”Autistic” or “Has Autism?”
My opinions started to change when I saw how autistic people themselves felt about these labels. Most do not see themselves as separate from their autism. It is a part of who they are. If we see a blind person, we do not say they “have blindness.” Likewise we wouldn’t say an English person “has English.” Many autistic people feel the same way and do not like autism do be described the same way as when we “have a cold” or “have flu.” A useful list of appropriate terms can be found on the National Autistic Society website.
The term “have autism” is called a person first reference. There are people who like this approach. They argue that an autism diagnosis doesn’t define a person. They do not wish to label that person. On the other hand, the term “autistic” is an identity first reference. A person who prefers to be called autistic is proud of their identity and who they are. They do not see it as something terrible that deserves to be pushed to the end of a sentence.
In a recent survey, autistic people were asked which term they preferred. Over half said that they preferred “autistic.” Eleven percent used the term “has autism.” The rest were happy to use either.
The best thing to do if you are unsure is ASK. Ask the person which terms they prefer to use. Many prefer “on the spectrum” as a kind of middle ground. It should also be said that the terms “high functioning” and “low functioning” can be highly offensive to the autistic community, as can the term “Asperger’s.” It’s really important to use terms that people feel comfortable with and that don’t make them feel like secondary citizens. Also as a parent of a child with autism, I’ve learned that it’s not considered appropriate to call ourselves “autism moms” or “autism parents” unless we ourselves are autistic.
With these points in mind, I’ve decided to change the title of this website to “My Autistic Child” out of respect for the autistic community. Unfortunately I’m unable to change the URL at present. Let’s keep these conversations going and continue to show respect and recognition for the feelings of others,