Perkins School for the Blind Transition Center

Why I Wasn’t Afraid to Label My Son

Dear Jack,

When you were about year old, we saw a bunch of doctors and specialists to try and figure out why you didn’t talk or point or look at us. And at that time, many people told us not to rush to give you a label.

“Be careful with a label, because it will be on all of his forms and medical records,” one man advised.

“It will follow him for the rest of his life,” another woman warned.

See Jack-a-boo, people don’t like labels. No one wants to be limited or boxed in or classified. They especially don’t want to be pigeon-holed, which actually has little to do with a bird and more to do with compartmentalizing people into teeny-tiny, mutually exclusive categories.

But at the tender age of 18 months, the doctor diagnosed you with autism spectrum disorder, and from that point forward, you were labeled.

Honestly? I’m glad.

Now, I’m not saying I’m glad you have autism. I’m not really sure how I feel about that.

I’m just saying I’m glad we know you have autism. I’m glad for the label.

See, if you didn’t have this label, I would probably snap at you to stop jumping and rocking and flapping.

I would think you were naughty and rude and disrespectful.

I might rush you whenever you try to explain something to me in your halted, robotic speech.

Every day I would feel exasperated and frustrated and angry and scared. I might even feel embarrassed or ashamed.

Maybe we would hide in the house like we did when you were a toddler, avoiding play dates and trips to the library so I didn’t have to see all the other kids who could wave bye-bye and blow kisses and play peek-a-boo.

But now, we don’t hide. We go to the movies and to church and to restaurants and roller skating. We go on vacation.

Jack, you are labeled. And every day I feel exasperated and enlightened and aware and frustrated and thrilled and angry and scared. I feel protective and vulnerable and inspired.

However, I never, ever feel embarrassed or ashamed.

(Well, I might have been a little bit embarrassed the time we went to see Maleficent and you announced, “We don’t need to BUY your candy. We have some HIDDEN IN MY MOTHER’S PURSE,” to the guy who took our tickets.)

Renouncing your label would be a fundamental rejection of who you are, like denying that you have blue eyes or long legs.

If I didn’t know you had autism, I might call to you impatiently when you stop to count all the tubs of frosting in the aisle of the grocery store.

“Jack, come on. Let’s go!”

But instead, I will myself to slow down, to stop the cart next to you and help you choose the best, most perfect pink frosting for the heart-shaped Valentine’s Day cake you’ve been talking about baking for weeks and weeks.

Maybe I would wish your baking phase was over, because sometimes it wears on me. But as I become more and more acquainted with autism, I know there will just be another phase lurking right behind it—it could be something innocuous like when you used to rub soap all over the walls, but maybe it will be something dangerous and scary, like when you used to try and run behind cars to see the license plates.

With your label, I have learned to enjoy the hoof beats of horses, because I know there are zebras ahead.

If we didn’t know you had autism, Daddy and I would probably be divorced. The pressure of fitting a square boy into a round world would be way too much for us, and we would crack apart.

Oh, we still argue. You know that. We disagree on whether or not you should wait in line at Disney or order chicken fingers at dinner or apologize for the tantrum you threw at a barbecue. Ultimately, we are trying to figure out how to best soften your edges, so the world may look and feel and taste a little kinder.

But mostly, Daddy and I celebrate.

Without your diagnosis—your label—I’m not sure I would go to such lengths to decorate for every single holiday. But you remind me to go into the basement and bring up the green shamrocks and red, glittery hearts. Your delight is so tangible, your joy so real, that I can’t help but be swept up in the magic.

“Mom. The hearts. They go on the shelf again. And on the table.”

Then there was our trip to Walgreen’s to buy valentines.

“Two. I need to buy two boxes.”

“Why? Why two?”

“There are thirty-two. Thirty-two in each. I have a lot. Of friends now. I need two. For sixty-four cards.”

Standing under the fluorescent lights, in an aisle full of plastic flowers and teddy bears, I thought about how you haven’t been invited to a birthday party or play date in well over five years. In over five years, not a single person has called the house for you, or rang our doorbell, or sent an E-vite.

I could have asked you, “Who, Jack? Who will you send them to?”

Or told you, “No, Jack. I think one package is plenty.”

I didn’t. I simply said, “Definitely. Definitely get two.”

Watching you walk up to the counter clutching two boxes of red cards, I couldn’t help it. My throat tightened and my eyes welled.

Because there is some pain not even a label can abate.

But without it, our family would only appreciate normal. If we didn’t have a name for your unusual characteristics, you may have faded into the background, eventually known only as the difficult brother; the boy who would not play basketball or dance to Michael Jackson or watch The Muppets at night with rest of us.

You would have felt left out, isolated, angry. You would have hated us.

Then maybe the difficult brother would have grown into the troublesome teenager and eventually, the weird uncle no one wants to sit next to at Thanksgiving.

Instead, we see you. Because of a label, we actually see you for who you really are; a funny, quirky, original boy. And every day our family works to bridge the gap between usual and unusual, the neurotypical and otherwise.

“This is my brother, Jack. He has autism. He hears you differently.”

Because of autism’s label, we eat our dinner surrounded by hearts.

You have autism. This is not your fault or my fault or Daddy’s fault. This is not anyone’s fault. It just is.

But you are not limited by your label. You are not pigeon-holed or compartmentalized or reduced. You are loved and embraced, and maybe even the tiniest bit understood.

As for me, I have learned many lessons from the autism label. I have learned how to slow the cart in the grocery store and find the pinkest frosting. I have learned how to compromise with chicken fingers, and that we should always buy our candy at the movie theater.

And one cold afternoon in February, I learned that friendship’s truest measure is not how many times the phone rings or the amount of invitations in your mailbox.

It’s the courage to stand at the kitchen counter, student directory in hand, and write out sixty-four cards for Valentine’s Day.

“For my friends, Mom. I have so many.”

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