Pursue a life beyond what’s ‘normal’

Colin walking with geese

The TED Talk that changed how I saw my son

“Today I have just one request. Please don’t tell me I’m normal.” These are the first words of Faith Jegede Cole’s TED Talk, and they changed me forever.

It was December 2012, and I was struggling to come to terms with my son’s recent autism diagnosis. I came across a link to Faith’s brisk talk — I wasn’t yet part of the TED team — and I decided to see what she had to say. When I was done, I scrubbed to the beginning to watch it over again. Then I sent the link to my wife.

When your child is diagnosed with autism, you’re inundated with reports and evaluations outlining the struggles your child is going to face, how difficult their life will be and all the work you have ahead of you. You immerse yourself in a pool of deficits wondering if you’ll ever climb out again, or whether you’ll learn to swim.

But here was someone who wasn’t framing the conversation in terms of deficits. Instead, Faith was talking about her incredible brothers and how their autism made them unique and special. Here was someone saying it’s not just OK to be different, it’s better. Here was someone telling me to look at my son in a different light, to notice all his gifts and potential.

Since then, I’ve come to think of Faith’s talk as my introduction to the neurodiversity movement, which celebrates diverse minds and ways of being — and understands, as Faith says, “Everyone’s got a gift inside of us, and in all honesty, the pursuit of normality is the ultimate sacrifice of potential.”

The talk

On love, empathy, and connectedness

Close up on the palm of a man's hand holding a tiny seedling.

In Colin’s world, anything small and vulnerable can be a baby.


“Rock it,” Colin says. “Rock the baby to sleep.” This time the “baby” is a tiny seedling he’s placed in the palm of my hand. Now he cradles my hand in his, swaying it back and forth and humming Rock-a-bye Baby.

On love

Colin loves babies. He talks to them as though they can understand what he’s saying. “How old are you, baby?” “Did you cry when you were born, baby?” He doesn’t seem concerned that they don’t answer. For their part, babies seem intrigued by this large-but-not-full-sized human with giant eyes and so many questions.

Colin has his own small collection of babies. At the moment, it includes four stuffed dogs and a doll with blue hair that he found in the playground. The first of his babies was a flop-eared stuffed dog he named “Pokelyn.” The others he named Chipwich, Doglass, and Lucy. (I don’t think the doll has a name.) He takes one of his babies with him to school every day.

A small stuffed dog sticks its head out of a backpack

Pokelyn in Colin’s backpack, ready for school

On empathy

If he can’t find one of his babies, Colin becomes frantic. He blames himself; he says he’s a “bad parent” for being careless. He worries that the missing baby is “not in this world anymore.” He imagines they must be scared and lonely. He hugs and kisses them when they’re found.

A small boy is hugged by his male therapist

Colin and Aaron saying goodbye

On connectedness

Colin has a very special friendship with Aaron, one of his therapists. Unfortunately, however, Aaron is moving away. Colin wrote Aaron a farewell note. It read:

Der Aron
I love you. Il miss you for along time.
Love Colin

If you’re unfamiliar with autism, I’d ask you to keep these anecdotes about my son in mind the next time you hear someone—whether they’re a celebrity, well-regarded researcher, or just a friend or family member—say that autistic people lack empathy, that they’re not connected to others, that they’re incapable of true love.

Remember, also, that people experience and display emotions in different ways, and that doesn’t mean their emotions are any less authentic or meaningful than your own. Look for the connections. You’ll find them.

A speck in a sunbeam

A young boy walks through a large subway terminal.

We take Subway Adventures with Colin.

He decides the destination, and off we go. Times Square. Canal Street. Brighton Beach. This Sunday, I let him navigate. First stop: 125th Street in Harlem on the A train. He loves the A train because it runs express.

He was jump-dancing as we flew past each stop—72nd! 81st! 86th! 96th! 103rd! Cathedral Parkway! 116th!—gleefully calling out the names of each passing station. Passengers looked: some smiles, some scowls. I loved it.

Rather than exiting at 125th Street, we headed to the downtown platform and took the A train the entire length of Manhattan to the World Trade Center. Once there, we explored the new PATH Terminal. He flopped on the ground and stared up at the vaulted, cathedral-like ceiling. He took his shoes off and skittered about saying, “Ice skating!” Announcing, “The tile is cold,” he strode over to a section of floor bathed in sunlight.

I watched him walk away until he was just a speck in a sunbeam.

 

When we were done exploring the PATH Terminal, he led me to the 2 train so we could return to Columbus Circle. This was his afternoon, and he took the lead, choosing destinations, reading signs in the subway stations, finding the right train to get where we were going.

Reflecting on our adventure, I realized that this is what happens when we presume competence instead of incompetence. When we assume capability instead of inability. This is what happens when we encourage “What if?” instead of “Why not?”

I was so proud of Colin. More importantly, he was proud of himself.


I like sharing my stories. If you enjoyed this one, please share it with others. If you really, really liked it, consider following me on Medium or on Twitter.

Thank you!