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, Andrew, was diagnosed with autism 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 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.
Now don’t get me wrong. I’m not hung up on Andrew’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-firstor identity-first language. Growing up, I was always taught to use person-first language. 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 person 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. There are so many things that factor in. I am still trying to figure them all out.