Let’s Stop Labeling Labels

Let's Stop Labeling Labels

by Stacy Strombeck-Goodrich

My kids already have at least one label. . . autism.

We learned early on that the autism label was necessary to get services.  Since then, we've been open about our kids' autism.  It's a part of them, like their blonde hair and brown eyes. Each family handles the autism-talk differently, but I would hate for my kids to feel bad, or embarrassed, or think that we as parents are embarrassed by something that is a part of them.  My friend likens it to the idea that she always knew she was adopted , and is therefore self-reportedly very well adjusted.  Friends of hers who were never told but then found out accidentally when they were older are still in therapy.

We talk about autism in our house.  A lot.  But not as much as we talk about poop.

So do we have to further label our kids "high-functioning" or "low-functioning?"  I feel like, if each label was stuck on his shirt, my kid would look like a NASCAR driver.

Autism moms, have you ever heard or said this before?  "Yes, my son Johnny has autism.  But he's very high-functioning!"  As though the "but" and the "high-functioning" negate the "autism."

When people I've just met hear about my kids, sometimes I get, "But they're high-functioning, right?"  I'm not really sure how to answer that question.  My eight-year-old is potty trained, but he struggles with speech.  He is in a contained classroom for part of his school day, but he has real friendships with other kids, both neuro-typical and not. Is he high-functioning?  Sometimes.  Does it really matter?  Not so much, in our world.

One parent I know said, "All developmental disabilities are a spectrum.  Autism is just the disability that actually got the name "spectrum."  And as another friend said, there are neuro-typical people who are not very high-functioning.  But I've never heard a parent say, "Yes, my neuro-typical child is high/medium/low functioning."

My friend Tammy had the best response I've ever heard.  When a school administrator asked if her son was high-functioning, she said, "I don't know.  He's high-maintenance.  Is that the same thing?"

So what's my kid?  He's pretty damn happy, I can tell you that.