My younger daughter’s name is Lily. When she was about 3 years old, Lily received a diagnosis which placed her within the autism spectrum.
I remember one of the things my wife was most concerned about at that time was the label. She didn’t want them to discount who Lily was because they were focused instead on the label. Autism was new to us. Labels were new to us.
My view was (in my opinion) more pragmatic. The label described what was going on with Lily. It helped shape in our heads an answer to all the questions we had regarding her many… quirks and delays. Here was the answer: autism.
To the extent that the diagnosis qualified us for therapy and helped us determine how best to help her optimize her potential, I celebrated it. In my mind, it changed nothing. She’d always been autistic — we just never knew that’s what “that” was. Now we knew.
I’ve written before that accepting your child should mean accepting that label. That playing the “autism” card should be just a matter-of-fact communication to help a stranger, caregiver, or service provider better understand and accept your unique child.
But labels can be used not just to help, but to hurt. The same label I use to explain Lily is the label another might use to discount her worth. Many labels doctors in the mental health field historically used to clinically describe patients have morphed into put-downs and slurs over the years.
So the question for autism families inevitably comes up: How can I respectfully label people who have received diagnoses of autism spectrum disorder? Because there will be times when referring to that diagnosis will become necessary. Lily is autistic, Emma is neurotypical. When I describe something Lily has done as a triumph, it might not make sense to a reader who’s unaware that she’s on the spectrum.
In my case, the label (when respectfully used) helps the reader put the story into perspective. It’s really no different than a caregiver trying to explain why their child might need a quiet space during a museum visit, for example, or noise-canceling headphones on a busy street.
What the labels are for
In the world of autism politics, this question of proper labeling is called the identity-first versus person-first language argument. The two sides, in a nutshell are:
Identity-first language: “My autistic child.” The idea here is that autism is your child’s neurological identity. It can’t be changed. It’s a part of them. Acceptance of the identity is acceptance of the child.
Person-first language: “My child with autism.” The idea here is that they’re first and foremost your child. The diagnosis doesn’t define the person or the relationship — it’s just something your child has with them.
So which way is right? When labeling isn’t necessary, I simply call my daughter “Lily.” But when it’s necessary, do I introduce her as “my daughter with autism” or “my autistic daughter”?
The answer is: They’re both right.
And that’d be the end of this article if it were truly that simple. But other people are just as certain that identity-first or person-first is the only “right” answer.
When I started writing, I didn’t want to offend the people I was trying to reach. So I researched it. What I found was far from definitive. I probably should’ve known that there’s no way to avoid offending everyone, that every time you take a firm stance on any issue, you inevitably bump into someone whose stance just as firmly counters yours.
How to pick a label
So while I said above that they’re both right, I’d also just as firmly state that neither is right. There are very good reasons for and against both labels. Here’s my advice for you when it comes to deciding which to use:
1. When appropriate, ask
Lily isn’t really in a place where asking gets me understandable (to me) answers. But that doesn’t mean I exclude her and stop asking. Involve your child in the decision. How do they wish to be labeled? If there’s a preference, then your search may very well be over. If not, however…
2. Find the label that works best for your family and yourself
You should research it. You should have a good reason for it. Your choice, or your child’s choice, will reflect something about you and your philosophy regarding autism, and regarding your child. There are people who’ll argue with you that the label you’ve chosen is wrong. So have a reason for it.
3. Recognize that there are no universal truths
At some point, you’re going to upset someone with your choice. There’ll be someone, someday, who decides you need to be educated on the “right” label for you or for your child. This will infuriate you. Just be prepared. They may have reasons for being offended by your choice, and that’s OK.
It doesn’t mean you’re wrong. It doesn’t mean they have the right to decide for you how you label yourself or your child. But it’ll still bother you. It’s OK that they have a different opinion than you do. Try to disengage as quickly as possible, and move on with your life.
One of the hardest things about raising kids is learning the lesson that there’s no one answer when it comes to parenting.
4. Approach your decision from a place of love and respect
Whatever you decide, you can’t go too far wrong if you’ve made that decision. Wanting to be supportive and sensitive doesn’t always mean being supportive or sensitive, but it’s a great start.
5. Be respectful of other people’s choices
Realizing that what’s best for you (see above) may not be what’s best for every family is important. Pick your battles. I’ve witnessed full-blown arguments erupt on social media when a troll cherry-picks a post to find what they consider a language violation and “corrects” it. Don’t be that troll. If I call my child “autistic,” don’t step in to say, “You should say child with autism, it’s more respectful.”
This is especially important when you’re communicating with an adult on the spectrum. These are people who’ve decided how they want to be labeled. They’re saying, “I feel most comfortable with this label.” Don’t tell them they’re wrong for feeling that way. This happens more than you could possibly imagine.
Just as you don’t want someone dictating their label to you, don’t be the person who steps in and tells someone else the best label for them. Unless they ask.
When I write about autism, I use the word “autistic.” Because Lily hasn’t expressed an opinion one way or another, because autistic adults I know and respect (along with the organization Autistic Self Advocacy Network) have chosen that label for themselves, and because I find “child with autism” to be cumbersome to write, read, and say.
I’m at peace with my decisions in general, but every so often someone will offer their suggestions that I modify what I’ve written to be more respectful. And when they do, I do my best to listen to their points and explain why I’ve made the choices I’ve made. And why I’m not changing them.