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, J, 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 J’s own unique situation. He’s an identical twin. He and his brother, D, 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 J qualifies for an autism diagnosis.
Hence the confusion…
Now don’t get me wrong. I’m not hung up on J’s diagnosis. I’m thankful for it! It’s opened so many doors for him to get the services 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 neurotypicals still use person-first language (news outlets, literature, professionals).
But there’s been a big push from the autistic 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 fully support their efforts to advocate for themselves. But with a spectrum that encompasses so many characteristics, I’m still so confused.
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 J 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 J. And if needed, I’ll say he has an autism diagnosis.
⚠️ UPDATE! ⚠️
It’s been one year since I wrote this article. My boys are five years old now, and in kindergarten. And guess what??? They’re both autistic!
So what’s changed??? Basically my own understanding, and that’s it!
Most of my confusion stemmed from J’s twin brother not qualifying for an autism diagnosis. But, it turns out he was misdiagnosed by a doctor who used an IQ test, instead of more appropriate tests for his abilities. (Insert face-palm here.) She said D was too social to “have autsm.” He looked her in the eyes and played with her (So many face-palms).
Once he was retested, I finally started to get it. D has been autistic all along, with or without a diagnosis! He learns differently. He thinks differently. He feels differently… Just like J.
And while they each have their own ways of learning, communicating, and interacting with the world, they’re both on the spectrum.
If I knew then what I know now, I would’ve told that doctor that her IQ test wasn’t made for my speech-delayed child. And I would’ve left her office right then and there.
But I didn’t know. I trusted the doctor to give me accurate information. I listened to her when she said his IQ was 58… even though I knew deep-down, it wasn’t true.
Maybe I can’t get a do-over. But hopefully this story will help at least one other person who’s struggling to understand what being autistic really means.
And thank you to all the autistic adults and parents of autistic kids who’ve stuck with me to help me reach a better understanding.
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