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:
– Identity first language by Lydia Brown (Autistic Hoya)
– Why I dislike “person first” language by Jim Sinclair, founder of Autism Network International (ANI)
– ‘Autistic’ or ‘person with autism’? by Jean Winegardner
– Autistic vs Person With Autism by Karin
– Autism-first Language by Elesia Ashkenazy, National Advisory Council of the Autism NOW Center
– 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.
– Person First Language by Katie Nelson
– 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?
Would you like more support as a special needs parent?
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As a University tutor teaching a subject “Inclusive education” to Masters Of Teaching K-6 students the protocol was person first, condition second. The lecturer/subject co-ordinator has a child with some disabilities. I think it sounds more respectful. However, it can be less ‘friendly’ in spoken language. I have no answer to that either but it’s hard these days with all the protocols that abound but I’m cognisant of why they are needed.
As someone who is autistic, it feels much more disrespectful to me for someone to say I “have autism” as if it’s a disease or otherwise undesirable. Whenever someone is said to “have” something, it comes with a negative connotation. That’s why no one would say I “have right-handedness.”
As the author pointed out, this is a contentious issue. However, if parents and medical professionals truly want to make people feel comfortable and not negatively judged, it’s time for them to start listening to those of us who are actually on the spectrum.
And by the way, you can still place the identity first by saying something such as “April is autistic” or “she’s autistic” has opposed to “she has autism.”
Very interesting question. I don’t actually have a preference either way. I alternately refer to myself as someone ‘with’ ASD, or on the spectrum, or autistic or an ‘Aspie’. But I know a lot of other people in the autistic women’s groups I belong to feel strongly about this issue. I think you’ve made the right choice in regard to your children.
Thanks for linking up #lifethisweek 11/52 Next week: Autumn
It’s hard when it’s so personal but I do agree, person first and then when you know someone, you know how they prefer to be referred to. And I think that’s not a bad idea for kids, raise them to be the most acceptable and I’m sure as they get older I’m sure they’ll look into other terms and choose for themselves.
For those who are arguing that person-first is needed because it sounds more respectful…. However, every other community of differences is respected for what the community wants, not what makes the non-members more comfortable, “aware”, etc. The deaf community is one such example. You also wouldn’t be having this conversation for any other condition, trait, or issue. The real question is, how does “person-first” language, which is ONLY used for disabilities, helping in any way to combat prejudice and stigma?
Wow! Thanks for your insight on this subject as an Early Childhood educator I have always be told to use person first language, and understand why. I have never looked at it from an adult or young persons perspective. Thanks for your words to open my eyes and thoughts on this area.
This has definitely given me a new line of thinking and even something to talk through with those that do have a condition, of any sort. This may help me in my work as a early childhood gym intructor too when faced with a participant with a disability. It seems that person first language is the initial way to go.
This was a really interesting read for me as I had a draft post on the same topic, which I’m posting today. I think lots of factors will come into play to determine which words to use to describe that someone is on the autistic spectrum. I’ve worked for many years with members of the Deaf community who would never refer to themselves as “person with deafness/hearing loss or even worse hearing impairment” so maybe that’s contributed in part to why I’ve been comfortable with identity first language when it comes to autism and my son. Interesting read! Thank you. #spectrumsunday
I’m autistic, parent of an autistic daughter. Identity first is the way to go. Person first language was only adopted by professionals (referring to your comment about this being the language that children will likely encounter and hence your rationale for using this language preferentially) because the NAS surveyed *predominantly* parents about their language preferences and adopted person first language. It’s common knowledge now that the autistic community prefer identity first, put simply, it’s empowering, builds confidence and positivity and the more that identity first language is used then the less stigma and negative stereotyping is attached to it. All the analogies I can think if are pretty inadequate to explain why it’s inappropriate for parentsnkt to use language with their children that they know autistic people prefer…. But I will try to give you one. Imagine you child was gay and you are heterosexual … And then you used language to describe your child’s sexuality that you knew gay adults weren’t comfortable with. Imagine disregarding the preferences of gay people of using identity first language and referring to your child as a child who is gay….. not because you have lived the experience if a gay person, but because you *feel* that person first language is more appropriate, because your child’s sexuality shouldn’t define them and that you’re afraid they’ll be labelled (and of course *labelling* infers that being gay is a negative thing in the context that you’re using the words label and labelling). Now ask yourself…. how might your gay child feel about their sexuality, their connection to their community, their relation to those outside of the gay community, their relationship to you… given your imposed preference for language?
Please listen to us – identity first language please, at all times.