When the Doctor Commented on the BMI of My Son With Autism

Last week, we had my 11-year old son Jack’s check-up, and my stomach sank when the doctor quietly pointed out his higher-than-average body mass index (BMI) on his chart.

You wouldn’t know this to look at him; he’s pretty tall for his age with the longest, skinniest legs in the world. But he’s solid, and like many kiddos on the autism spectrum, he has low muscle tone.

“You don’t need to worry just yet,” the doctor said kindly while Jack tried to remove the stethoscope from his neck. “But you do need to be watchful.”

Watchful? Is there any single aspect of this boy of which I’m not watchful?

A part of me feels like I can’t take this on; I can’t work on one more single thing with him.

(Things we are currently working on: screaming, swearing, keeping his seatbelt on in the car, screaming, saying please and thank you, using his fork at dinner and sleeping past 5:30 in the morning. Oh, and the screaming.)

But another part of me, a part that has more energy and isn’t tired of redirecting him and shushing him and asking him to use his words, feels as though I owe it to him.

If he’s overweight, it’s my fault. I’m the one who buys the food and cooks the food and sometimes, orders the sweet and sour chicken food to be delivered in a brown paper bag.

It’s my fault I let him play on the iPad because he’s too distraught for hide-n-seek.

It’s my fault I let him have ice cream after dinner every night because his world would fall right apart if he didn’t get his ice cream in the red bowl the minute he’s finished eating.

If one of my other four kids — and I won’t say normal or typical or whatever, I’ll just say other — started to gain weight, I’d make sure they moved a little more and maybe snacked a little less. Yet, like everything in Jack’s world, autism has complicated the matter.

For the most part, it’s a pretty simple equation: burn more calories than you consume and you will lose weight. Or, burn the same as you eat and you will maintain your weight.

But for my son, the calculation is a little different. You have to factor in the way autism demands he have the same dessert every night and makes him apprehensive of organized sports’ social subtleties.

Jack loves the ritual and tradition of food, such as pancakes on Saturdays and waffles on Thursdays, popcorn at the movies and popsicles at the local pool. He loves to bake large, elaborate cakes for everyone’s birthday. Oh, and let’s not forget his Oreo phase, when he begged to try every flavor Nabisco ever made.

He’s one of the few people I’ve ever met who wants to eat breakfast the second he opens his eyes. More often than not, I walk downstairs first thing in the morning and find him surrounded with his bowl of cereal and milk.

“Mom. I am happy today to find. The Honey Nut Cheerios.”

We had years when he refused anything unusual or new. As a toddler, he would only eat yogurt. Then as he got into kindergarten and elementary school, he wouldn’t touch the stuff. In fact, he wouldn’t eat anything with a wet texture, like applesauce or fruit.

Now he’s starting to try new things, like carrots dipped in ranch dressing and coconut shrimp. He’s once again eating yogurt — but only Chobani vanilla-flavored from a particular grocery store on the other side of town.

(Please don’t ask me why, because I have no idea how or why the vanilla Chobani yogurt from Hannaford’s is better than the vanilla Chobani yogurt from Market Basket.)

I know we’re lucky. I know many families struggle to get their spectrum kiddo to try a bite of anything at all. I’m grateful that the dinner table is no longer a battleground, but there’s also no moderation when it comes to which way Jack’s pendulum swings.

Over time, food has become highly important to him— planning it, shopping for it, preparing it and cooking it. His face lights up at the thought of a new recipe or a different kind of cookie.

It makes sense. Food lends order to his day: breakfast, lunch, dinner, dessert. It’s concrete. It’s soothing. It tastes good.

The other problem is Jack hates — and I mean hates — exercise of any kind, especially team sports.

We tried soccer. Disaster. We attempted baseball. Nightmare. We dipped our toes into the icy water of the swim team. Unsuccessful. So far, the only physical activity we’ve had luck with has been karate.

This spring, he also ran track for the Special Olympics team, but he refused to do it unless his brother, Joey, did it too. Even then, it took a fair amount of arguing in the car each week before he’d get on the field.

This isn’t to say he doesn’t move throughout the day. If self-stimulation, or autism’s charming side-effect defined as repetitive movement, were an Olympic sport, Jack would win a gold medal because a lot of his time is spent grunting and rocking and hopping around the room. We call it his zoomies. Apparently, zoomies do not burn off after-dinner bowls of ice cream.

And although he hated swimming on a team, whenever we go to the pool in town, he jumps off the diving board so many times it makes my head spin. High jumps, cannonballs and straight drops into the cold water.

I suppose I could create a schedule for him — a matrix with times and meals and healthy snacks and all that. I could make a rule that he has to ride his bike up and down the driveway for at least an hour, or play tag with his brothers and sister outside.

But I spend so much of my day — my life — begging my rigid boy to flex and bend that frankly, it feels crappy to start asking him to count calories and manage a fitness routine. He already has his own self-imposed rituals and rules, and I’m reluctant to add any more.

Our culture is not-so-neatly intersected into two somewhat polarizing categories; there’s the love-yourself-as-you-are category, and the health-obsessed category. When it comes to Jack, I feel as though I’m standing at the intersection.

See, I don’t care if Jack is overweight or pudgy or round. I don’t care about his higher-than-average body mass index or lower-than-average muscle tone.

I don’t care if he never steps foot on a soccer field or shoots a three-pointer on the basketball court the same way I don’t care if he marries a man or a woman or a purple muppet from “Sesame Street.”

This is what autism does for me. Having a son like Jack forces me to drag all the ugly, gross, embarrassing parts of my psyche into the light and examine them. It forces me to understand exactly where I stand at the crossroads of love and health, hope and fitness and food.

I want him to be happy. I want him to love and be loved, and I want him to have all the things he wants for himself.

I want him to enjoy the taste of cold, chocolatey ice cream on his tongue after dinner and the rush of water over his body after a jump from the diving board.

Mostly, I don’t want him to have to experience any more shame, insecurity or embarrassment than he already does.

“What is for me weird. They said weird for me.”

“Why am I a lonely boy.”

“Mom. I do not want it. I do not want this autism in me.”

But like the spectrum itself, there is no one solution to Jack’s higher-than-average body mass index. Whether it’s swearing or screaming or seat belts or ice cream, we can only take it a day at a time.

Today, we’ll remind that his body needs good food in order to be strong and healthy and fit.

Today, we’ll remind him that he always feels better when he rides his bike or swims in the pool or dances to the music.

Today, and every day, we’ll remind him he is loved.

And we’ll hope for the best.

Follow this journey on Carrie Cariello’s blog.

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