You know the phrase – If you’ve met one person with autism, you’ve met one person with autism. Well it’s true.
Since my son, Julian, was diagnosed with autism last year, I’ve done a great deal of research about the autism spectrum. I’ve talked with countless doctors, therapists, autistic adults, and autism parents.
Each professional I talk to and each article I read sends me in a different direction. Each individual I talk with tells a different story.
Honestly, autism confuses me. The whole idea of a spectrum confuses me.
If a man tells me he’s Chinese, I know that means he’s from China. If a mom says her son has Down Syndrome, I know he’s rockin’ an extra chromosome.
But when a woman tells me she’s autistic, I don’t even know where to begin. I want to ask, How so?
I’m a college educated woman. I taught elementary school for 5 years. I consider myself intelligent and resourceful.
But when it comes to autism, my IQ seems to drop a dozen points. No matter how much I research, I still don’t understand what being autistic really means.
I’m sure part of my confusion stems from Julian’s own unique situation. He’s an identical twin. He and his brother, Dominic, were born prematurely, and spent 6 weeks in the NICU. They’ve always been delayed.
And while they both have trouble sleeping, both walk on their toes, and both rock like they’re on the crew team, only Julian qualifies for an autism diagnosis.
Hence the confusion…
Now don’t get me wrong. I’m not hung up on Julian’s diagnosis. I love him unconditionally, no matter what. And I’m thankful for his autism diagnosis, which has opened so many doors for him to get the treatment and therapy he needs.
But recently, there’s been a lot of talk about how to refer to a person who’s been diagnosed with autism – whether to use person-first or identity-first language.
Growing up, I was always taught to use person-first language. Darla has schizophrenia… She is not schizophrenic. As a general rule, person-first language is more respectful.
But there are well-known exceptions to this rule. For instance, the deaf community prefers identity-first language. Susan is deaf… not Susan has a hearing impairment. The blind community is the same way.
The debate about person vs. identity language seems to be a hot topic in the autism community. The vast majority of people still use person-first language (news outlets, literature, professionals).
But there’s been a big push from the autism community to make identity-first language the norm. There are several reasons for this push, which all have merit and make sense to me. One adult autistic I’ve met explained it this way:
I say “autistic,” not “with autism” because I don’t carry it next to me in a messenger bag. It’s part of me, from the brain down.
Another person told me he thought having autism sounded negative, like it’s a disease. And he clearly wore his autism as a medal of honor, as if it were a real-life super power.
Hey, I get it! And I support their efforts to advocate for themselves. But with a spectrum that encompasses so many characteristics, I have to ask this question:
What makes someone autistic? Surely the diagnosis itself isn’t the main factor, as many adults have been newly diagnosed since the DSM V came out. And there will certainly be edits to the diagnosis criteria as more research is done, and more feedback has been given.
Right now, I don’t know if Julian is autistic. He’s four. I know he likes to laugh. I know he enjoys playing with his brothers. I know he loves going to the beach and the aquarium.
I also know he’s not ready to talk yet. And he has trouble getting his body to do what his brain tells it. But I think I’ll wait a bit longer before I call him something that he may not agree with.
Because language is very important, as autistic adults have been trying to point out. And I want to give him time to develop, and figure out what he is for himself. So for now, I’ll call him Julian. And if needed, I’ll say he has an autism diagnosis.
What are your thoughts about person-first language? Do you think neurotypical people should be able to make this decision for the autistic community? I welcome your feedback.