Open Sea

Read Time4 Minutes, 53 Seconds

boy autism looks out at ocean sea

Imagine you’re in the middle of the open sea. A good-sized boat, extra paddles should you need them and a hardy crew to help steer you through the bad storms. Plentiful food, a toasty spot under the sun and a warm blanket once the stars come out. Sure, there are big waves and fishes of all sizes under the water. If you look up, you might even catch some pesky grey clouds that hug the horizon. But it’s a decent, honest life. And it’s all you’ve known.

Now stick with me here and take this story further.

Some distant man, who lives 2 continents away decides that your life sucks. You’ve never met him, but he feels sorry for you.

“WHO COULD BE HAPPY LIVING IN THE MIDDLE OF THE SEA?” he thunders.

“WHAT KIND OF EXISTENCE IS THAT? THIS HAS TO CHANGE AND CHANGE NOW!” He denounces everything you stand for, and what’s worse, he rustles up large numbers of similarly inclined people with one goal in mind: to FIX IT for you. And not once, does he ask for your input. Not once.

In this exercise, replace “middle of the ocean” with “being a woman/belonging to a particular religion/having green eyes”. Could you picture what it would be like, if someone looked down upon you because of what made you….well YOU? What if someone wanted to cure and improve you, because your current existence makes them uncomfortable? Because you didn’t live up to their expectations?

This happens to people on the Autism Spectrum ALL THE TIME. Every single day, there’s a new article worrying about whether autistics should be cured, because God forbid, we cannot let them live in peace.

“She flaps her hands all the time. Should I give her ‘xyz’ supplements to fix this?”

“He won’t stop rocking back and forth and squealing. It upsets everyone else in class. How do I get him to stop?”

“I am so irritated. Why can’t she understand basic instructions? Why is she being such a brat?”

“Will my autistic child ever become normal like his peers? Is there a cure for this?”

Posts like these crop up on every special needs group and chat. And sadly, for the most part, the focus is on fixing the individual to fit society’s idea of normal and appropriate.

Now, at no point am I suggesting we leave our kids to their own resources. I am all for improving the quality of their days and giving them the skills to enjoy happy, fulfilling and financially secure lives.Every child, regardless of circumstances, deserves the best. Early intervention, therapy, socialization classes, special education, medications, support groups – each of these resources must be accessed to give our children all the tools they need to flourish. That’s what responsible caregivers do and I fully support setting up our children for success.

But when we change the core of who our child is and when we try to snuff the autism out of them, we’re doing them a huge disservice. Our quirky kids are very perceptive. So what happens, when they realize we’re pronouncing them “less”. Are there enough bandages in this world, to fix the broken heart of a child who’s been told they’re not perfect in our eyes?

If we wanted to learn about writing or art, we’d take a course. If we wanted to study how a car works, we’d work with a mechanic. We wished to learn to cook? We’d find the best chef in town and beg them to teach us. Why then, is it so difficult for us to ask real, live autistic people to help us understand them better? Why do we choose quack remedies and snake oil salesmen who promise to take our beautiful children and change them forever?

Instead of fixing autism, we, as a society can change our lens. Create sturdy scaffolding to make the world more accessible for those on the spectrum. Design our classrooms to be inclusive. Spread awareness and design a sustainable and flexible support system. Change work environments and create meaningful jobs for neurodiverse people.

At the very least, walk up to autistic individuals and connect with them at a human level. Assume competence, acknowledge their challenges and offer solidarity. And most importantly, encourage the NON autistic population to leave behind their prejudices and realize we’re all in this together.

Life on the open sea isn’t always smooth sailing. There’re cold, stormy days and blistering hot ones. Predators of all sorts, waiting for you to dip one fleshy toe into the water. It’s not for the weak and it’s certainly not for the intolerant.

So what can we do? We can build. Big boats and bigger ships. We can ask around and collect a reliable, resilient crew. We can spare no effort and collect everything else we need to make this a memorable journey.

Our Captain wants to sail to the corners of this earth. He’s excited, he’s flapping his hands, and he’s more authentic than anything you can imagine. Don’t ask him to stay on land.He’s a child of the ocean and to the ocean he belongs.

And if you’re brave enough, hop aboard his boat.
I promise you, this will be the trip of a lifetime!
Disclaimer: I do not speak from a place of privilege. Like every other child
on the spectrum, mine has his share of big, scary challenges. Over the past two years, we’ve battled OCD, anxiety and a whole alphabet soup of issues. While we constantly work towards making his tomorrow better, I can say with utmost honesty that I wouldn’t change a thing about my kiddo!
He’s 9, goofy and absolute perfection!
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About Post Author

Pavi

I'm a proud ​wife/mom awaiting my certificate in "Advanced helicopter parenting". An avid coffee enthusiast. A physician in another life. My hobbies are reading and writing, then nitpicking what I write. I also love running, daydreaming about the zombie apocalypse and getting more sleep. Mostly,I can be found laughing at my kids’ wacky sense of humor. I have this amazing husband and together we've spawned 2 kids. We live in California.
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