I’ve been mulling over this issue for a while now. As a parent, what’s the best terminology to use for my son and daughter who are both on the autism spectrum?
Person with autism or autistic person?
I know some readers were surprised recently when I shared a facebook post, referring to adults on the spectrum as “autistics”. It’s not a term I’m entirely comfortable in using but I was trying to use language that many adults on the spectrum prefer.
Many people, like me, are more comfortable using more politically correct terminology. Person with autism, putting the person before the condition, has long been considered the preferred way of referring to people on the spectrum.
This is called person first language. This mode of terminology is widely used across the disability sector. It’s preferred, because it identifies the person first and their condition second. In most sectors, this is the only acceptable way to refer to someone with a diagnosed condition.
For example, when referring to people with albinism, like Gilbert, I always use person first language. The alternative, albino, is highly offensive to most people with albinism, due to the long history of the term being used as an insult or slur.
The same goes for many other conditions. So, if in doubt, it’s always best to start by using person-first language (unless guided otherwise by the person concerned).
Now, you’re probably wondering why I’m even bringing this issue up, if it’s so cut and dried?
Well, in the case of autism, it isn’t.
As I alluded to earlier, many adults on the autism spectrum prefer to be referred to as autistic, rather than as a person with autism. They prefer identity first language to person first language as autism is an integral part of their identity.
More and more adults on the spectrum take pride in their diagnosis and embrace their neurodiversity – their different way of thinking. For some, it can be offensive to be referred by the more politically correct terminology as it differentiates them from their diagnosis and infers that autism is something of which to be ashamed and hidden.
Autistic advocates rightly point out that we don’t describe personal characteristics in person first terms – “person with red hair” or “person with kids”. We’d normally say “red-haired” or “mother/father” to describe these characteristics. So why not use autistic in the same way to describe their autism?
You might be surprised by this view, particularly as the term, autistic, has similar negative connotations to the word albino.
However, the word is being reclaimed and embraced by those who wish to self-identify themselves. As parents, we need to be aware of this choice and this point of view.
Our job is to raise our kids to be the best they can be. To give them every opportunity, provide them with love and support and to help them find their ultimate path. I think it’s vital we understand autism from all sides and learn from therapists, specialists, other parents, our kids and autistic adults as well.
Which brings me to the crux of this issue – how we, as parents, refer to our kids and their condition.
This is only my personal opinion, but until they are old enough to express an informed decision of their own, I’d stick to using person first language as a safe bet. This is the language they will more than likely encounter during early intervention – it makes sense for us to use this language as parents too.
However, I most definitely think we need to introduce them to identify first language from an early age. It’s important they become familiar with it and can make a fully informed choice on which term they prefer to use as they grow up.
Later on, if they wish to self-identify and use identify-first language, then follow their lead and respect their wishes. We should not impose our own judgments on them or argue the point.
When you talk with adults on the spectrum, ask them which term they prefer and listen to their preference. Don’t lecture them on the term they should use. Respect their wishes and their right to self-identify as autistic.
You can also use the term “on the spectrum,” which safely avoids both person first and identity first language. This is a term I often use in my writing to be as respectful as possible without causing too much offence to either side of the debate.
This is a contentious issue and I don’t think there is a right or wrong answer here. These are just my personal thoughts as a parent to two kids on the autism spectrum.
As long as we listen to our kids, we listen to the broader community and we open ourselves up to different points of view, we can respect both sides of this debate.
Remember, the bottom line is respect.
If you’re interested in reading more on this issue, these articles from autistic writers are essential reading:
– Autism as a lifestyle as seen through the eyes of an autistic adult by Kassiane Sibley
– On Language by Gordon Darroch
– Climb off your high horse already by Rob Gorski
– Autism First (Again) by Jeff Gitchel
– People First Language: What it is and why it matters by the Arc of Anchorage
– Put me first: The importance of person-first language by Mary Tobin, M.Ed.
– An Autism Parent on Kathie Snow’s People First Language by Julie L.
– People First Language by Kathie Snow (PDF)
– Olmsted on Autism: “Retards” and “Autistics” by Dan Olmsted
– “Has Autism” versus “Is Autistic”; A muddled debate from Autism and Oughtisms
– The Last Word on “Person First” Language by Stuart Duncan
– Is It “Autistic Person” or “Person with Autism”? by Stuart Duncan
How do you refer to those on the spectrum – person with autism or autistic person? Do you prefer person first or identity first language?