Why I’m Ok With the “Autism” Label

You’ve probably seen the bumper stickers:

labels screen-shot-2016-10-20-at-8-57-59-pm

Once upon a time, they made me chuckle or smile. Now I bristle.

Labels can be damaging, yes. Labels can also be a freeing source of autonomy. The difference is how we use them. Are we using them to empower or disparage? Name a condition or insult a person?

I admit, the label once scared me. The first time I wrote about Henry’s diagnosis I said this:

“Autism is not a shame. It is a way of sensing and processing the world that looks different from yours and mine. And I have come to realize the world is a better, richer, smarter place for the creative and creating minds of autistic individuals.”

Later, though, over my favorite yeast rolls and sweet tea, I remarked to my brother-in-law,

“The good news is, we’re catching it early and getting him the help he needs, and by the time he starts school people might not even notice.”

(Lord, forgive me. Clearly, I was still processing.)

I didn’t know then what I know now. I didn’t know that people noticing isn’t something to avoid – that it’s good for people to notice. When we say we don’t want our children to be perceived as different, when we say we want them to be the same as everyone else, we’re saying much more than we realize. Same doesn’t equal fair.

We might think we’re saying, “Treat them fairly,” and perhaps to an extent that is true. Certainly, we want our children to feel supported and loved, to not be threatened or bullied.  We want them to have authentic opportunities for friendship.

Often, though, the desire to not be seen as different is in an education context. If we say, “I don’t like labels“, what we’re also saying is, “Don’t see their needs. Ignore their struggles.” If we want our kids to look like everyone else, we have to be ok with them being left behind or even mistreated. We have to be ok with uniform teaching and uniform expectations.

If we’re really honest with ourselves, I don’t think that’s what we want. Same isn’t fair. Fair is each to his own need. Fair is a ramp or an elevator for a person who can’t walk. Fair is glasses or braille for a person who can’t see. Fair is closed captioning for a person who can’t hear.

Fair is also allowing a child with ADHD to stand at his desk or sit on a therapy ball.  Fair is providing a visual schedule for a child with Autism Spectrum Disorder who struggles with transitions. Fair is providing Alternative Communication for the nonverbal. Fair is providing a notetaker or a tablet for the child who cannot write. And so on. Same would mean no therapy, no accommodations, no compassion. All we really want to be the same is love. 

I used to hope “people might not even notice,”  but today I hope they do. And when they do, I hope they see all of him. See his strengths and his weaknesses, his laughs and his cries, his joy and his pain. See both the disability and the gift, inextricably linked. See the differences as beautiful and necessary parts of nature, not as something to objectify or pity.

Bumper stickers are funny, but not always accurate. Just like labels, they only tell part of the story.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

2 Comments

  1. Beautifully written, Meredith. My favorite lines: “If we want our kids to look like everyone else, we have to be ok with them being left behind or even mistreated. We have to be ok with uniform teaching and uniform expectations.”

    Thank you!

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