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Why I Hate Functioning Labels

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I am an adult with autism, raising a son with autism.

And I hate functioning labels.

I do. I despise them. I don’t care for labels at all, but as an autism parent, I do understand how these labels get our kiddos the help they need.

But really… functioning labels are the worst. They’re designed to show where our children are on the spectrum, but they’re actually limiting our kids.

Here’s an example.

My son, Liam, has been diagnosed by four doctors as having autism — as well as bipolar disorder and many other things. (He has a full plate.) Two doctors said he’s high-functioning. The other two said he was moderate.

Why two different functioning labels? Let me tell you. Liam’s IQ is 120.  He tests gifted in math and vocabulary. But his reading comprehension is bad. He can read to me, but he can’t tell me what he just read. He’s considered “learning disabled” in that area. Even though he spoke early, his speech was so hard to decipher that it was considered a speech delay.

So it would seem that based on his IQ and some of his test scores, he’s high-functioning. But, based on his disabilities and behaviors, he’s moderate.

Liam has also learned to pass. For those of you not familiar with the term, “passing,” it’s when a person with autism is able to pass as “normal.” There are some days where Liam can play with his peers or be in a public setting, and no one would know he’s on the spectrum. But before long, passing becomes too much work, and a meltdown ensues. There are also days where he doesn’t even try to pass. It seems at 8 years old, he’s realized that, around the people who accept him most, there’s no need to pass.

So you see, Liam is literally all over that spectrum. He doesn’t fall into one convenient slot. And the more parents I’ve spoken to, the more I’ve learned that Liam isn’t alone. So why do doctors and therapists insist on using these functioning labels?

Autism isn’t a competition.

I don’t care where you or your child fall on the spectrum. My child doesn’t care where you or your child fall on the spectrum. People are different. Autism is different. Not one of us is the same.

So in my world, there are no labels. Last year I was told I was on the spectrum. The term she used was “high-functioning.” No. I don’t consider myself high-functioning. I’m simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.

Basically, my autism is my autism. Liam’s autism is his autism. And your autism is your autism.

This post originally appeared on My Life With My AuSome Son.

Originally published: October 17, 2014
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