Autism and Body Mass Index
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 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 am not watchful?
A part of me feels like I cannot take this on; I cannot 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, 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 correcting him and 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 am 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 that 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 just 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 would make sure they moved a little more and maybe snacked a little less. Yet, like everything in Jack’s world, autism has threaded it’s annoying wormy head into the matter and complicated it.
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; 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 us not forget his Oreo phase, when he begged to try every flavor Nabisco ever made.
He is one of the few people I have 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 where 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 is starting to try new things, like carrots dipped in ranch dressing and coconut shrimp. He is 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 are lucky. I know many, many families struggle to get their spectrum kiddo to try a bite of anything at all. I am grateful that the dinner table is no longer autism’s battleground, but as usual there is no moderation when it comes to which way Jack’s pendulum swings.
Over time, food has become very, very important to him; planning it and shopping for it and 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 is concrete. It is 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.
Jack and autism, by their very nature, are adverse to team sports and playing well with others and not being bossy or losing interest or staring at the ball with a blank expression as if it was an alien life form. 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 would 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 is already bound by his own self-imposed rituals and rules, and I am reluctant to add any more.
Our culture is not-so-neatly intersected into two somewhat polarizing, categories; there is the love-yourself-as-you-are category, and the health-obsessed category. When it comes to Jack, I feel as though I am 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 endure any more shame, or 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 seatbelts or ice cream, we can only take it a day at a time.
Today, we will remind that his body needs good food in order to be strong and healthy and fit.
Today, we will 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 will remind him he is loved.
And we will hope for the best.
July 6, 2015 @ 12:25 pm
I hope you can relax about the issue of his being a little overweight. Our son with autism is no 30 years old and has slimmed down a LOT. He was rather pudgy when he was young, but now he is so active, it’s hard to make sure he eats enough to keep up with his metabolism. In addition, he developed seizures just before he turned 20 and I’m thinking that probably burns up a lot of calories, too. Plus it does seem like food is a great motivator for ALL people, but especially for people with autism. Our son receives M&M’s as a reward and soda, too. What can you do? Hang in their! I love your blog!
July 6, 2015 @ 12:28 pm
I hear ya about team sports! Neither of my kids (with their anxity and sensory issues) can handle team sports or even most classes. We are doing horseback riding as a family at a therapeuitc horseback riding center. It works because the instructors are not only trained to deal with anxiety and sensory issues but also actually work on coping with them and moving past them. Now this isn’t exactly a cardio thing but it has gotten my kids interested in horses and now my daughter can’t wait till she’s old enough to volunteer there which would require more physical work. Otherwise we only manage to get our physical activity in via jungle gyms, dance wii, bouncing around the house posessed, sibling races, mommy-made obstacle courses and occasionally we talk them into long nieghborhood walks. Of course none of this compares to the muscle mass the kids get who are doing gymanstics and swim team several days a week. Because most of their physical activity comes from goofing off at home, we have made a point to invest in large obnoxious things including: mini-trampoline, 360degree rotating hook with attachments (climbing rope, platform, etc), yoga ball, peanut? (yoga ball shaped likea peanut?), weighted balls, colorful cones, balance disks, and scooter boards (to use inside on the hardwoods). The more big things they have to play around with in the house the more they seem to do with their bodies. When they were younger they were happy to spend hours outside but not so much the older they’ve gotten, hence all the inside equipment taking over.
Can’t wait to see if a commentor gives a really great idea for physical activity for those kids who are rigid, anxious, and easily overwhelmed by people.
July 6, 2015 @ 12:35 pm
Our boys are so similar, from the yogurt during infancy to the soccer disaster. Eli is 9 and has the added complication of a very complex heart defect, so now that he is older, he can’t participate in contact sports or anything that risks a blow to the chest (there goes Tae Kwon Do) or heavy lifting. I agree totally with so many of your posts and enjoy reading knowing that you really, really get it.
July 6, 2015 @ 12:50 pm
Reblogged this on Not The Former Things and commented:
I could’ve written every word of this to describe my son. I am so grateful that Carrie was brave enough to say what I feel all the time about my son’s weight and it’s relative importance to all the other things.
Autism and Body Mass Index - Not The Former Things
July 6, 2015 @ 1:01 pm
[…] Originally posted on Carrie Cariello: […]
July 6, 2015 @ 1:13 pm
We had the same doctor’s appointment in June. Same eating patterns too. A food he had to have every day, so I stocked up A LOT. One day he declares “I don’t eat mini-muffins anymore”. But all of a sudden he’s back to whole wheat toast with nutella. A slight nutritional win, so I’ll take it. For activity he runs between mailboxes while I walk, or inside has to do three 10s (of something like stair runs, jumping jacks, sit-ups, jumping off the coach or stairs). It’s not much, but it’s something. I go by the 80/20 rule for myself, but am happy if he’s at 65/35 (healthy/not so healthy re: carbs).
July 6, 2015 @ 1:17 pm
I feel your pain. Due to meds and lack of activity my 12 year old son has gone from a fit child to an overweight preteen. He is like your son…specific foods, restaurants etc. Can’t handle camp or sports, we have a pool so summer means more activeness but won’t go in a pool where it’s in the public so winter swimming is out I’m really hoping as he gets older and mature is more that he will be able to handle more situations and become more healthy. I can’t worry so much about his activity at this age because he is working on so much more that is more important to me and him.
July 6, 2015 @ 1:45 pm
I am so thankful for this blog everyone Monday because it reminds me that I am not alone and that I am not the only Mom with these struggles!! I will remember today that my Jack is loved too and that is all that matters!!
July 6, 2015 @ 2:37 pm
Hi there The Hagasi School near Boston has an interesting philosophy. They say the 3 biggest challenges for autistic students are lack of appetite/ picky eating/ gastro problems, problems with sleeping, and agitation. They say that running helps with all of these and they take everyone running every morning. Maybe someone in your family would like to try running and try that with Jack. At that school all the teachers, staff, houseparents have to be willing to run with the kids. Which is part of why I didn’t even apply to work there. I always thought my grandson would love that part of it.
If not, he might like a trampoline.
July 6, 2015 @ 3:18 pm
Yes to above post. PLEASE check out Mikey Branigan from Northport NY…one of the countries finest distance runners and autistic.
July 6, 2015 @ 4:17 pm
Dear Carrie, You are amazing. Please believe me. I can’t remember when I read your first post but something clicked in me. Full disclosure, I do not have a child of my own on the spectrum. I taught special needs children years ago and some were classified as autistic at the time. Autism was brand new as a diagnosis and somewhat of a catch all. As often happens many families have some differences or issues, ours is ADHD/ADD. I was diagnosed after all three of my sons were and now a grandson. This has become our norm. When I read what you share with us about Jack I feel love, caring, compassion, concern and many more emotions not only for Jack but for your entire family coming from your writing. I can imagine that some days are better than others and that some are wonderful while others horrible but I do not see or hear self pity at all. That is why I began this by saying that I think you are amazing. ANY child would be lucky to have you as a Mom. Jack and your adorable four others are the luckiest ones. Thank you for reading this. Heaven knows you are a busy woman! That is the understatement of the century. Please keep writing, if possible, I will keep reading and finding this to be one of the highlights of my week. Sincerely, Lisa Caramagno Michigan
July 6, 2015 @ 5:14 pm
Your blog makes me feel so understood. Thank you, thank you. My boy is so similar–would play LEGOS all day and draw LEGOS all day. Sometimes I find an activity for him, but this summer, it’s so hot, and he just does not want to be in the heat. I, too, keep hoping that the zoomies will do something good for him. This weekend, when I allowed him a bag (a BIG bag) of Doritos, he said, “This junk food is so awesome.” I got so tickled. Partly because it was funny and partly because he was just plain so happy, and I was the one who bestowed the happiness. One day at a time. Thanks, again.
July 6, 2015 @ 10:44 pm
Besides the autism, isn’t it common for boys 9-12 to put on weight pre-puberty right before growth spurt? With watching food and exercise, it is possible he may grow it. I was worried about my sons weight gain at that time, but he grew much taller and slimmed down some. It isn’t the weight as much as the low muscle tone. He walks a lot–paces as a stim/thinking time. Hates exercising, has “bad” feet. Organized sports were a bad idea–but special needs gymnastics and dancing worked best. Swimming was good when it was lessons/practice/fun. Swim team was good for friendships but torturous for competition. My son appreciates junk food–it is a strong motivator after years of special diets. It does get overwhelming with so many things to worry about.
July 6, 2015 @ 10:49 pm
I love to read your blog because Jack reminds me of my younger sister Sarah 20 years ago. She was one of the first females diagnosed with Asperger’s. She never did organized sports but she loved to run a cross our yard, sometimes for hours. She eventually created a 6in wide 3in deep groove diagonally from the driveway to the patio. And refused to let anyone watch her. She also biked to the local church and back down a side street. More recently she and her husband (she married her high school sweetheart) took ballroom dancing lessons so they could dance at my wedding. They recently had a baby and she joined a group of young moms called stroller striders. I think non competitive is the key.
July 6, 2015 @ 11:38 pm
Trampoline works wonders!
July 7, 2015 @ 1:33 am
We have hit the chubbies with Nash. Last year he was average in his weight. But, slowly he is putting on weight. I asked the doctor to change one of his meds because it was a weight booster. Done! But, the weight is not dropping very fast. Is it also because we lost our respite care teenage boy (he went off to college) that would run Nash around the neighborhood for 4 hours every week. Or is it because Nash gets dessert every night if he eats a proper meal…not cheese pizza for 4 meals in a row. Thank you…you make my Mondays!
July 7, 2015 @ 10:20 am
We’ve had a lot of success with fencing – it was offered as an option at our out of school club here, my boy thought he’d give it a go. A few months later I was telling his paediatrician and she said it was one of the best possible sports for people on the spectrum – really great for muscle tone and co-ordination/general fitness/ and of course it isn’t a team game and you can play pirates while you’re doing it…. Worth a shot?
July 7, 2015 @ 11:04 am
I wish you could meet my Max. Max started gaining weight around 11, when we started him on Abilify. The Abilify allowed him some degree of relief from stimming and obsessive habits, but he did get quite pudgy.
It all comes down to finding what works, but you know that. Try non-competitive “races” with his brothers and sister, a trampoline, hiking, cycling, or geocaching. It took me years to get Max to even participate in gym class. I taught him to mow the grass (gas powered push mower) when he was 13. Finding something that interests him, then keeping him interested, so difficult.
He will be 16 in a week, he is at a good weight, but every day I struggle to get him off his bum and moving.
How is Jack’s leg healing?
July 7, 2015 @ 12:55 pm
We are in that place with our son too. For years his diet was self-limited to about 4 dry, crunchy foods and McDonald’s chicken nuggets. With feeding therapy, he became able to cope with a wider range of foods, but he also put on weight faster than he should. He is not a fan of group sports either. He used to like the mini-trampoline, but now not so much. I’m hoping the energy required for puberty will help him slim down some.
July 7, 2015 @ 8:23 pm
WE DANCE! My grandson and I will dance whenever there is music and the spirit moves him. We do the happy dance, we dance it out when we are frustrated. We do the crazy dance when we’re angry and the thankful dance when ….well, when we are thankful! He shows me the dances he learned to songs in pre-K or Sunday school. We have danced in the rain and in the dark. We have danced in the middle of his favorite frozen yogurt place and in line at the bank. One of his favorite cartoons is one where the main character asks her viewers to copy her movements in order to solve a problem, and we make a dance out of that, very sure that we are really helping her by doing it!
I remember worrying three years ago, when he was first diagnosed as being on the spectrum and with Sensory Processing Disorder, that he might never be able to deal with his emotions, or even understand or show them. Our dances proved my worries unfounded. He gets some exercise and expresses his emotions at the same time…and I am so thankful.
July 9, 2015 @ 12:05 am
Your blog brings back many memories for me. My Andrew was an extremely picky eater. He wouldn’t eat soup or casseroles. My mom suggested I make him scrambled eggs for dinner. That worked for a while.
Over time our son began to try new foods. Now he eats practically everything. It does get better.
We had a trampoline for years like Louise and he loved that.
Andrew loved theater. He could dance, act and sing. Theater kids are great too. They are quirky and accepting of differences in people.
Now Andrew is a music major in college and he is writing a piece called “The Unknown Spectrum” to help other autistic kids. I will keep you posted on his progress.
Thanks again for your blog Carrie.
July 9, 2015 @ 11:33 am
Carrie, I went through this with my severely autistic son. He gained a lot of weight from the medication he takes, and for once he didn’t “grow out of it.” Over time (lots of time) I was able to switch out a few carbs and introduce lettuce (no, not salad, just lettuce.) After four months he lost seven pounds and his ped was happy. It was not easy and it took forever, but the kid who’s never eaten a veggie now eats his version of salad. I wish you luck with this and get how hard it is!