This was originally posted at a group blog that I’m part of: We Are Like Your Child. It primarily addresses parents of young autistics, but I’m reposting here because I thought other autistic adults might have helpful tips to add or their own wishlist of things they’d known about puberty.
One request: if you talk about anything traumatic, please reference it obliquely. There are some younger readers here now and I could see others finding this post in a search for autism and puberty or adolescence.
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When it came to puberty, my parents did what many parents in the seventies did: they gave me a book about puberty written especially for girls. It was a slim cranberry hardback with an ambiguous title like “Everything is Changing.”
I was a voracious reader, so I would curl up in my beanbag and scour the pages for clues to the mysterious changes that were on the horizon. I think I had many of the same fears, anxieties and curiosities about puberty as my friends had. Certainly my body went through the same changes that other girls experienced. However, I think there are some areas where girls on the spectrum would benefit from additional information or guidance. That’s what I’m going to focus on in this post.
Many of the issues I want to touch on also apply to boys. I’m specifically addressing the issue of puberty in girls because I was once a girl and I raised a daughter. Girls are my wheelhouse. If you’re looking for information about boys, I hope you can adapt some of the ideas below but, honestly, boys are a mystery to me.
A few words of preface to this piece: I grew up as undiagnosed autistic with a gifted label, so my experience is different from what doubly exceptional children today experience. There were no social stories or social skills classes when I was a kid. Asperger’s Syndrome didn’t become an official diagnosis until I was 25. If you’re younger than I am and grew up with the doubly exceptional label or you have a child who is doubly exceptional, I’d love to hear about the differences or similarities in your/their experience.
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Remember how, back when you were in school, there was one day of the week that was better than all the others? Maybe it was pizza day or the day you had band practice or art class. There was always one day that you looked forward to all week, right?
In sixth grade, for me that day was Friday. On Friday, I got to leave my regular classroom and walk down the hall to the TAG classroom. TAG stood for Talented and Gifted–a town-wide pilot program that accepted two sixth graders from each of the five elementary schools in our small suburb.
Ten geeks, eight of whom were boys. Ten kids who happily poured over reference books on Blitzkrieg and backgammon while the rest of the town’s sixth graders were wrestling with the math and reading curriculum we’d finished the year before.
Looking back, in addition to being gifted, most of us were probably on the spectrum as well. We were all socially awkward to some degree. None of us had to be asked twice to choose a topic for our Type III independent research projects. We came to class lugging backpacks filled with resources. We had entire libraries at home on the subjects we wanted to explore.
No matter what we asked to study, Mr. M, the aging hippie who taught the class, encouraged us. When I told him I wanted to “study” MAD magazine for my second project, he explained the concept of satire and helped me work out why the comics were funny.
Alfred E. Neuman and his famous tagline
TAG was aspie heaven. If I spent the afternoon curled up in a beanbag with my stack of MAD magazines, no told me to return to my seat. If I was the only kid in the class who brought a bag lunch because I couldn’t stomach the school pizza, no one at the lunch table made fun of me. If I needed to have a joke explained, even a whole magazine full of them, there was Mr. M, sitting at his desk, ready to patiently answer our questions with humor and honesty and not an ounce of condescension.
He thought we were the coolest kids around and in that classroom, we thought we were too.
Doubly Exceptional
Today, kids like the ones I shared the TAG classroom with are labeled doubly exceptional or twice exceptional. Back then we were the geeks and the nerds. Particularly if you were a girl and you were smart, people seemed to expect you to be weird. “Normal” girls weren’t smart and smart girls were quirky.
Adults wrote off our quirks as a byproduct of our intelligence. They sent us out to the playground and expected us to figure out how to navigate the social minefields that lurked within kickball games and jump rope circles. We were smart. We would get it eventually. When we didn’t, they reminded themselves that we were smart and because we were smart, we would get by.
And we did, but not always in the way they hoped we would.
As the concept of giftedness evolved, some theorists put forth the idea of giftedness as “asynchronous development,” suggesting that gifted children reach intellectual milestones faster than other children but lag in cognitive, social and emotional development. Proponents of this theory say that children who are hyperlexic, for example, develop in a fundamentally different way because they have access to advanced ideas at an earlier age than other children.
While this may be true of some gifted children, for many it serves to shift the focus away from their developmental disability–explaining it away as a byproduct of their giftedness. It’s easy to look at this model and assume that these children will just magically catch up with their peers developmentally. After all, they’re smarter than their peers. What’s keeping them from being just as adept in the social and emotional realms?
This is a bit like taking a kid who’s a good baseball player, throwing him in the pool, then being surprised if he sinks like a rock. What do you mean he can’t swim? If he’s athletic enough to hit a baseball, surely he’s athletic enough to swim.
Does my metaphor of a drowning child seem extreme?
If you spent your recesses and bus rides and summers at camp getting mercilessly bullied, physically threatened or worse, you probably wouldn’t think so. For kids who are developmentally disabled but intellectually gifted, expecting them to get by on intelligence alone is the equivalent of throwing them in the deep end of the pool without teaching them to swim first. It’s leaving them to drown–emotionally and mentally–all the while telling them how smart they are.
When a Strength Isn’t Always a Strength
Not that encouraging intellectual strengths is a bad thing. Unlike kids labeled developmentally disabled and given a deficit-based course of therapy designed to “fix” them, doubly exceptional kids have an advantage in their intelligence. It allows them to mask a huge portion of their disability.
Oh, wait–is that really an advantage?
Masking our disability with coping strategies and adaptations means that when we fail to hide something, people assume we’re not trying hard enough. Or we’re being deliberately obstinate. Or that we’re lazy, defiant, insolent, shy, ditzy, or scatterbrained.
“What’s wrong with you?” they ask incredulously. “You can memorize the batting averages of the entire Major League, but you can’t remember to put your homework in your backpack?”
And so the doubly exceptional child grows up thinking, “If only I tried a little harder . . .”
No matter how hard she tries, the refrain never changes.
Can’t hold down a job. Can’t finish a degree. Can’t maintain a relationship. Can’t seem to do the things an average adult can do.
“What’s wrong with you?”
If only I try a little harder . . .
Now What?
There is no gifted class in adulthood. No one cares if you can memorize all 20 spelling words after looking at them once. You don’t get to escape life on Fridays, reading MAD magazine while the sounds of the playground drift in through the open windows.
When you arrive in adulthood lacking the social skills that most people have mastered by sixth grade, life becomes exponentially more confusing and hard to navigate. For much of my adulthood, I’ve had the odd belief that someday I would “grow up” and suddenly feel like an adult. That I was just a little behind the curve when it came to social skills and one day everything would magically fall into place.
I don’t know when or how I was expecting this to happen. It’s illogical. Maybe it stems from the belief that social skills are intuitive rather than a skill set that needs to be learned.
Neurotypical people acquire social skills primarily by absorption; autistic people need to be taught social skills explicitly. When we’re not, we’re no more likely to learn them intuitively than a typical person is to pick up algebra intuitively.
Maybe that’s where the problem lies. Adults often assume that if a kid is smart enough to learn algebra in elementary school, he or she is smart enough to figure out social rules too. But who would expect the reverse to be true? What rational adult would say to their kid, “you’re smart enough to find friends to sit with at lunch, why can’t you figure out how to solve this linear equation yourself?”
I (Actually Don’t) Know What You’re Thinking
Even as I write this, I find myself cringing internally. Do I sound like a whiner? Shouldn’t I be thankful for the advantages my intelligence gives me?
Again, I find myself arriving at the notion that if I just tried harder, just applied the intellectual resources I have, I’d be fine.
Yes, intelligence helps. In particular, it helps me identify patterns and come up with rules–rules that any neurotypical adult could tell me, if I asked them.
If I thought to ask. Which I often don’t.
For example, at a get-together at a neighbor’s house, I accidentally knocked over a wine glass. The glass broke; I apologized.
Years later, while reading an etiquette book, I learned that I should have offered to replace the glass. This sounds like common sense now, but it’s not a rule I would have intuited or even thought to ask someone about.
Perhaps this is why the invitations for drinks at that neighbor’s home abruptly stopped? Did they find me insufferably rude? I have no idea.
Worse, when I mentioned the rule to my daughter, she frowned and said, “You didn’t know that?”
There are hundreds of unwritten social rules like this one. I have no idea how people learn them. Perhaps they don’t. Perhaps after a certain point, it becomes all about the dreaded perspective taking. You break a glass and think, “If I were the hostess, what would I want my guest to do to make this better?” And the obvious answer, when I think about it like that, is “offer to compensate for the loss.”
One Rule at a Time
Generally, I learn a social rule by reading about it, having someone explain it to me or seeing it in action. Unfortunately, many rules are executed privately, so there is no chance for me to observe them. The polite guest gets the hostess alone in the kitchen and asks about the cost of replacing the glass. (So says Emily Post.)
Even more frustrating: I’ve had people offer to replace something that was broken at my home. To me, that rule is, “If a guest breaks something in my home, they’ll offer to pay for it.” I don’t instinctively reverse the rule to apply to myself as the guest. If you’ve heard it said that autistic people aren’t good at generalizing, well, there you go.
There’s something at work here that has nothing to do with intelligence.
I’m smart and I’m developmentally disabled. One does not cancel out the other.
Through the magic of old home movies (actually DVD transfers of grainy super 8 footage), I’ve been able to study bits of my childhood, looking for typical early childhood signs of autism.
Hindsight is not only 20/20 it’s very entertaining. I decided to liveblog scenes from my autistic childhood, so you can share in the fun.
Let’s go back in time . . .
DVD #1: The Early Years
Through most of the first disc I look like an average baby and toddler. Maybe a little hard to engage at times. I’m often staring intently at something off camera. I’m interested in objects as much as people. Give me a baby doll and I’ll probably hug her. Or wield her like a club. It’s a toss up.
I’m not the most expressive baby. I more often look panicked or confused or grumpy than happy. Hmmm, when I do look happy it tends to be the shrieking, hand flapping sort of happiness.
Then this happens:
My dad is on the floor in front of me, just outside the cropped frames. At first he’s making noises and I’m laughing. After a few seconds of that, I look up toward the camera, suddenly oblivious to him. Frustrated, my dad puts his hand between me and the camera. Note the unchanged expression on my face before and after. He shakes my shoulder, tickles me, calls me, tries the hand thing a couple more times. Nothing seems to get through to me. I’m still staring at whatever’s caught my attention when the frame goes dark.
Doesn’t respond to his or her name or to the sound of a familiar voice.
Soon I see more clues:
51:55 – I’d rather sit and bounce on my ball than throw or kick it.
53:01 – The first of many shots of me happily swinging on my backyard swing set.
54.35 – I’m intensely interested in hammering nails into a piece of scrap wood. With a real hammer! There’s an entire reel of hammering. Perseveration R Us.
58:38 – A little hand flapping for the goats at the petting zoo.
1:04:14 – Here I am getting a haircut. I loved going to the hairdresser because it meant I got to play with the rollers and hair clips. And by play with, I mean sort by size and color.
Doesn’t play “pretend” games, engage in group games, imitate others, or use toys in creative ways.
DVD #2: Vacation!
Being away from home causes me to stim nearly nonstop. In the first twenty minutes, I’m 3 to 4 years old and still an only child. I wonder if being the first child–with no siblings to compare my behavior to–makes my autistic traits less obvious to my parents.
3:40 – Here I am rocking back and forth in my stroller at Santa’s Land.
5:21 – My parents prompt me to wave to the camera. Again. I rarely wave unless they tell me to.
Uses few or no gestures (e.g., does not wave goodbye)
8:12 – An entire reel of me sitting beside my inflatable pool, washing the grass off my feet. I’m still doing it when the camera shuts off. I seriously did not like having grass stuck to my feet. Or grass in my pool.
9:40 – Happily swinging on a porch swing.
9:52 – Really happily swinging on a chain link fence. Okay, more like happily full body slamming the chain link fence.
Flaps their hands, rocks their body, or spins in circles
10:39 – Staring intently at an animatronic display. So intently that I have my face pressed flat up against the glass.
11:40 – Swinging on a glider. A disproportionate amount of these movies are of me swinging on things.
11:55 – Stimming with Santa! Here’s how my 4-year-old visit with Santa goes: I get on his lap. I sit facing away from him and never once look at him. I fiddle with the candy cane wrapper in my hand, examining it like it’s the most interesting thing I’ve ever seen. Santa says something to me. I pretend he doesn’t exist. I fidget with the wrapper some more. Santa says something and waves at the camera. I enter a state of serene bliss in which nothing exists but the wrapper. Santa waves some more. Santa tries to take away my candy cane wrapper. The screen abruptly goes dark.
Exhibits poor eye contact
12:42 – More rocking, this time while posing in front of a statue of a giant pig.
12:56 – More intense staring at animatronic gnomes.They’re rocking gnomes. I love them. In fact, I love them so much, I’m rocking in time with them.
13:20 – More staring. This time at dwarves.
14:18 – Here I am rubbing Humpty-Dumpty’s egg-shaped body. Over and over again, my parents pose me on or next to something and I immediately start rubbing my thumb or palm over the closest surface.
Engages in repetitive gestures or behaviors like touching objects
15:49 – Swinging from the rope of the school bell in an old fashioned schoolhouse.
16:32 – Bouncing up and down with the White Mountains in the background.
You get the idea. Ten more minutes of vacation footage and I’m constantly in motion. Bouncing, rocking, fidgeting with my windbreaker zipper, kicking my feet, flexing my knees, jiggling my feet, rubbing surfaces, hand flapping.
Moves constantly
I’m thinking it’s time to shut the DVD off, assuming I’ve made my point, when I see my sister do something I haven’t done once in more than 90 minutes of video: she points. She’s about a year old, and she’s pointing at the petting zoo animals. That’s when it hits me. I have one of the classic early childhood autism symptoms–a failure to point at objects.
Doesn’t point, wave goodbye or use other gestures to communicate
Soon we’re at Disney World with a family friend. She and my sister point again and again at things they’re excited about. I don’t point at anything. Not once.
30:06 – I’m about six here and I’ve learned to wave at the camera without being reminded. I’m riding on a carousel and wave at the camera every single time I go by. Yep, I’ve got the waving thing down good.
35:36 – We’re at Gettysburg. I’m around seven years old. My mother and sister are posing by a canon, waving at the camera, chatting away. I’m climbing on the canon, rubbing the canon, pretending to ride on the canon, paying no attention to them or the camera.
Appears disinterested or unaware of other people or what’s going on around them
It’s interesting to see footage of my sister and I at similar ages. I see how much more likely she was to engage with the camera, to wave spontaneously, to be smiling or talking or paying attention to the people around her.
I also see that I took a lot of cues from her. She’s four years younger, but at times–like when we’re interacting with characters at Disney World–I’m obviously watching her and following her lead.
And now that I’m no longer the sole focus of the camera’s attention, I’m a lot more likely to just wander out of the frame.
DVD #3: A Slew of Holidays with a Dash of Empathy on the Side
12:10 – Back in time again, to my 2nd birthday party. It’s a huge one. Every cousin, aunt, uncle and grandparent wedged into our basement rec room. I’m looking a little overwhelmed, circling a pole in the background as my cousins mug for the camera. When it’s time to blow out the candles I bravely poke a finger into the icing, lick it off my finger and immediately grab a napkin to clean my hand. Some things never change.
17:51 – Halloween. I’m six years old and for the first time I see evidence of my inability to tell if anyone is paying attention when I’m talking. As I scoop the seeds out of my pumpkin I’m rambling on about something to my sister who is too young to understand and my mother who is bustling around the kitchen, not even in the frame half the time. I’m blissfully undeterred.
Tends to carry on monologues on a favorite subject
20:12 – A bunch of Halloweens flash by. I’m Raggedy Ann. I’m a nurse. I’m a cat. Every costume has a stiff plastic mask which I pull off repeatedly. After yanking off the cat mask, I tug at my hair with both hands. Even today, my single most vivid memory of Halloween is the warm wet sensation of plastic against my face as my breath condensed on the inside of those masks.
29:50 – It’s snowed! My eighteen-month-old self is skeptical. I touch the snow with one mitten. Look at my hand. Immediately begin flapping. Cut to a shot of me a few months later, enjoying a fine spring day by toe-walking up the driveway. Yet another thing I’d say I never did if I hadn’t seen it here.
32:50 – I’m sitting on the couch with a doll. My parents have mounted a light on the camera to improve their movies. I peek toward the camera, grimace in shock (or pain?) and close my eyes. I not only don’t look at the camera again, I turn my doll’s head away too. Empathy! Does it still count if it’s for an inanimate object?
May be unusually sensitive to light, sound and/or touch
40:19 – My sister and I are playing with my dolls in my room. By playing I mean I’m lining them up against the wall by height while preventing her from touching them. She enjoys this about as much as you’d expect a toddler to.
Obsessively lines up or arranges things in a certain order.
Looking back at these old films through the lens of autism is really enlightening. I had telltale signs of Asperger’s syndrome at a time when AS didn’t exist. I don’t remember much of what I’ve related here, but I do remember being a generally happy kid in my preschool years. Because I didn’t attend nursery school or daycare, I guess spent my first five years in a bit of a bubble, happily stimming my way through Santa’s Land.
Was I a happy kid or what?
Signs of Autism in Early Childhood
While I’ve highlighted many of the early signs of autism in my observations of my younger self, each child is different. You can find comprehensive lists of early signs and symptoms at Mayo Clinic: Autism Symptoms and/or the CDC’s ASD Signs and Symptoms.
I don’t mean alone in the sense of being unattached; I’ve been married for more years than I’ve been single. By alone, I mean in a solitary state. I’m tempted to say not in the company of other people, but I can be alone in a crowded room as well as in an empty room.
If you’re not an aspie, this might make you feel sad for me.
Don’t. I enjoy being alone. I know this can be hard to understand. The Scientist often tells me that I should go out more, that it’s not good for me to be home alone all day. One of the enduring themes of my childhood was that I needed to make more friends. It showed up on report cards and in parent-teacher conferences. At one point my parents discouraged me from visiting my best friend, in the hopes that it would force me to make other friends.
Mostly it all made me angry. I didn’t see the point of interacting with a lot of people. Having a couple of friends left me plenty of time to do the things I liked to do alone: riding my bike up to the reservoir, walking in the woods, listening to music, reading, organizing my collections, shooting baskets, rollerskating, throwing a tennis ball against the wall, playing board games. Continue reading Alone→
Like a lot of what I experience because of Asperger’s, until I started reading about insomnia, I didn’t realize that I’ve suffered from it on and off since I was a child.
Apparently, I’ve always had slightly abnormal sleeping habits. Sometimes it takes me a long time to fall asleep. Some nights I wake up a half dozen times; others (like today) I wake up at 3:00 AM feeling like it’s the middle of the afternoon. I can hit the ground running at 5:00 AM with an energy level that seems to piss people off.
In more technical terms, I have classic signs of autism-related insomnia:
prolonged sleep latency (time to fall asleep)
reduced sleep efficiency (decreased time asleep/time in bed)
reduced total sleep time
reduced sleep duration and continuity
night awakening exemplified by of long periods of time awake1
I was shocked to learn that the prevalence of insomnia in children with ASD is 40% to 80%.2 When you read about typical symptoms of autism and Asperger’s, sleep disturbance is not only missing from the core list of diagnostic symptoms, it’s rarely mentioned at all.
What my clock read this morning when I woke up.
A Budding Insomniac
My parents adopted a benign disinterest when it came to my sleep habits. They put me in bed at eight o’clock and the rest was up to me. I’d make multiple trips to the bathroom for a drink of water or to take one last pee (three or four or more times) but as long I didn’t bother my parents, they didn’t make a fuss about whether I was actually sleeping.
I had a nightlight beside my bed and most nights I’d hang over the side of the bed, reading until I felt tired. Before I was old enough to read, I would sit at the top of the steps and listen to what was going on downstairs to pass the time until I felt tired. In my teens I got a portable black and white TV for my birthday and I’d watch TV, using earphones so I wouldn’t get caught.
I think my parents knew about these habits–they occasionally pointed out that I’d go blind if I kept up my “reading in the dark” and more than once they shooed me back to bed from the bottom of the steps. On an average night, though, my parents’ bedside lights had been turned off by the time I made my last couple of trips to the bathroom.
When I woke in the night, which happened most nights, I’d call my dad and he would lie down in my bed while I went to the bathroom. I’m not sure what purpose this served except that I remember being a little afraid of the dark after walking into a wall and getting a bloody nose one night. I guess it was reassuring to know that if I did it again, at least my dad would be there to hand me some tissues.
My parents’ laissez-faire attitude toward my sleep problems taught me two things: (1) it’s not a big deal and (2) you’re responsible for putting yourself to sleep. The second part sounds a bit harsh, but because they never made an issue out of when or how much I was actually sleeping, it never felt that way. A little lonely perhaps, but I also liked those few hours at night when everyone else was asleep and the house was quiet. I got to indulge in my special interest (reading) and that was calming, which eventually lulled me to sleep.
Granted, if I’d been destructive or intent on going out to roam the neighborhood, this strategy wouldn’t have worked.
What Works for Me
As an adult I’ve learned that having the right sleep conditions makes a big difference for me. Some things that help me sleep better:
1. Plenty of exercise during the day. I need to be physically tired to sleep well so getting in at least an hour of walking, running and/or swimming every day is essential.
2. Heavy blankets. The slight pressure of a heavy comforter and blankets relaxes me. If I only have a sheet or light blanket, I’ll wake up repeatedly.
3. A cool room. I tend to overheat when I sleep. I’m not sure if this is Aspergers-related, but if the room is even slightly warm, I’ll wake up sweating.
4. Comfortable clothes. As a kid I wore snug fitting pajamas. I still can’t sleep in anything that’s too loose, like a nightgown, because I end up feeling like it’s strangling me the first time I turn over.
5. Familiar surroundings. It’s much easier to relax when I’m in a familiar environment. If I go on vacation or move to a new place, it takes me a few days to “learn” to sleep there because my brain needs to catalog the unfamiliar sounds and smells.
6. A quiet environment or consistent noise. I need either total quiet or a consistent natural noise (wind, waves, steady traffic) to fall asleep. Something like intermittent voices, a radio or a television–even one playing in the apartment above or below me or in an adjoining hotel room–will keep me awake until it stops. In fact, I’ll usually be awake long after it stops because of the anxiety it generates.
7. A dark room. I can’t sleep unless the room is completely dark. Light shining in my room through a window or under/around a door will keep me up. The flashing light of a muted television drives me nuts.
8. Reading (or enjoying a special interest) before bed. Reading has been one of my special interests since childhood. Like any special interest, it distracts and calms me. I think it’s also become a sleep cue. When I pick up a book in bed, my brain starts sending out sleep signals to my body. It usually only takes 15-20 minutes of reading before I start to feel myself drifting off.
9. A light dinner and no snacks after dinner. I fall asleep faster and sleep better if I have a low-fat, low-sugar dinner and give myself at least a few hours to digest it before going to bed
Those are the things that I’ve discovered over the years work for me. I’d love to hear from others on the spectrum who’ve discovered tricks for getting to sleep or staying asleep.
Recently I was talking with my daughter about my sleep habits and she asked why I don’t try to resolve my insomnia. I told her that it doesn’t bother me–I use my middle-of-the-night time to read or think–or impact my daily life. Her response was, “Maybe it does impact you and you don’t realize it because you’re so used to it.” There’s a lot of wisdom in that statement. Something to think about, for sure.
(Unless you’re a geek like me, you can safely stop reading here.)
A Little Geekery About Melatonin and Circadian Rhythm to Wrap this Up
There are a few theories about why so many people with ASD have sleep problems. One of the most prevalent theories points to abnormal melatonin levels.2 Consequently, many children with ASD-related insomnia are given melatonin to induce more regular sleep habits. From what I’ve read anecdotally, this works well for many children and results in unacceptable side effects for some.
Another, lesser-known theory that caught my attention suggests that neurodevelopmental disorders increase the likelihood of sleep disturbances due to an inability to perceive and interpret sleep-related environmental cues.3 This is obviously far more difficult to measure and quantify in a lab than melatonin levels (which are easily measured in blood plasma). But it got me digging for more details because so much of my Asperger’s seems to trace back to the dysfunctional processing and filtering of my environment.
Caution: amateur scientist at play: I learned that our circadian rhythm (the internal clock responsible for, among other things, when we sleep) relies on external inputs to regulate sleep. The natural light-darkness cycle is the primary input, but our circadian rhythm can also be affected by our rest/activity schedule, mealtimes and social interaction. All of these inputs pass through a “central pacemaker” in the brain, which “outputs” various hormones that act as signals to the rest of the body and regulate the sleep-wake cycle.
Here’s a nifty graphic showing the “input” and “outputs” of the human circadian system4:
From “Exercise and melatonin in humans: reciprocal benefits” in Journal of Pineal Research by Escames et al.
The really interesting part is that the body can’t maintain an accurate 24-hour circadian rhythm without the input of environmental cues. Our natural circadian rhythm, in the absence of environmental cues, is 25-27 hours. Whoa!
Perhaps dysfunctional processing of one or more circadian inputs throws off the circadian rhythm, leading to the abnormal levels of melatonin (a key output) found in many people with ASD.
The dysfunctional processing theory would explain why many of the things I do to help me sleep better qualify as circadian inputs: exercise, consistent activity cues around bedtime, no eating close to bedtime, and a dark room. Over the years I’ve developed inputs that tell my body loud and clear: calm down and go to sleep.
It doesn’t always work but I have a feeling things could be a lot worse.
References:
1Goldman, Suzanne et al. “Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence” J. Autism Dev Disord, 2012, (42) 531-538.
2Souders MC; Mason TBA; Valladares O; Bucan M; Levy SE; Mandell DS; Weaver TE; Pinto-Martin D. Sleep behaviors and sleep quality in children with autism spectrum disorders. SLEEP 2009;32(12):1566-1578.
3Williams, P. Gail et al. “Sleep problems in children with autism” J. Sleep Res. (2004) 13, 265–268.
4Escames, G., Ozturk, G., Baño-Otálora, B., Pozo, M. J., Madrid, J. A., Reiter, R. J., Serrano, E., Concepción, M. and Acuña-Castroviejo, D. (2012), Exercise and melatonin in humans: reciprocal benefits. Journal of Pineal Research, 52: 1–11. doi: 10.1111/j.1600-079X.2011.00924.x
Aspies are notoriously unathletic. We tend to be clumsy and uncoordinated. Chalk it up to a motor planning deficit, poor executive function, proprioception difficulties, dyspraxia, or all of the above. Whatever the cause, the result is that we’re more likely to be branded a geek than a jock.
Unfortunately, I never got the memo on this. All my life I’ve loved sports and being physically active. Loving sports, in my case, isn’t the same as being good at sports, but I’ve never let that stop me.
Though my parents didn’t know I had Asperger’s they did know that I was clumsy. One of their nicknames for me was “Grace”–as in, “careful there, Grace” and “that’s our daughter, Grace.” I think this is funnier when you’re the one saying it than when you’re the one tripping over an inanimate object.
Perhaps in an effort to help me overcome my lack of coordination, they signed me up for a lot of individual sports: dance, gymnastics, bowling, golf, diving, swimming, karate.
Most of these were activities that I could do with other kids but didn’t require the type of interaction that team sports do. I was on a bowling “team.” All that meant was that I took turns with four other kids. The bowling itself was an individual pursuit. Other kids took a turn. I took a turn. I got to add up the scores. I wandered off to watch one of the arcade games. Someone called me back when it was my turn. It was great.
Golf and dance and karate were the same. I did these things alongside other kids but not really with them. There was an appearance of social interaction. The actual amount of interacting I did was minimal and that was fine.
I’ve always loved individual sports for exactly this reason. I learned to swim soon after I learned to walk. My family had a swimming pool in the backyard so I was in the water months after being born and enrolled in swim lessons as soon as the YMCA would take me. Swimming is still one of my favorite ways to relax. I love being in the water–the sensation of weightlessness, of gliding, of floating, of being surrounded and suspended–and I love the rhythmic movement and sensory deprivation of a long swim.
My YMCA Minnow patch – one of the few things I’ve saved from childhood.
As an adult I took up running. Like swimming, I enjoy the rhythm of running. I also like the way it gets me out into the quieter places–trails through the woods, quiet paths along the river, a beaten single track frequented more by deer than humans. I loved long bike rides as a kid for the same reasons.
The Beauty of Individual Sports
I tried team sports. In middle school, I was on the school softball and basketball teams. It was fun but I wasn’t very good at it and spent most of my time sitting on the bench during games. I also got razzed a lot by coaches for not making enough effort. My basketball coach was always yelling at me to be “more aggressive” but I had no idea what she meant.
There was a lot about basketball that I didn’t quite get. Team sports have many variables–the rules, the other team members, the fast pace, the ball (inevitably there’s a ball involved). For the typical aspie, this is a lot to manage. By the time I got to high school, I knew that team sports weren’t for me.
But individual sports! This where aspies can shine. When I’m out on the trails or in the pool, I feel strong and athletic. I feel like I’m coordinated and connected to my body. I feel like I’m good at a sport! Forgive my exclamation points, but this is exciting for someone who grew up feeling clumsy.
So, let me sell you on the wonders of individual sports for aspies of all ages:
1. You can progress at your own pace. Individual sports allow you to measure your progress against yourself. While you might compete against others, most individual sports also encourage “personal bests.” Running a new best time for a mile or swimming a personal best for a 400 is as fulfilling as beating an opponent. Maybe more so, because it’s an indication that your practice is paying off and you’re better at your sport than you were a month ago or a year ago.
2. You can be part of a team without the pressures of a team sport. Individual sports can be less stressful than team sports when it comes to having to perform well every time. If you have a bad day as a team player, your actions can impact the whole team. If you have a bad day as a cross country runner, you might not place well, but one of your fellow runners could still win the race. There are team consequences, but they tend to be less severe.
3. You can practice by yourself. This is a huge advantage for aspies. Because of our motor coordination issues, we might need a lot more practice than the average person to learn or master a skill. When that skill is something that doesn’t require a team or a partner to practice, we can spend hours working on it alone, at our own pace.
4. You play side-by-side with others. Team sports put a big emphasis on bonding with other team members, which can be stressful for aspies. Individual sports allow you to play alongside others, interacting as much or as little as you feel comfortable.
5. Individual sports tend to be rhythmic, repetitive and predictable. And what do aspies like more than rhythmic, repetitive, predictable movement? Running, cycling and swimming are like large-scale, socially acceptable stims. And you can do them for as long as you like. The more, the better!
6. Individual sports can burn off a lot of excess energy. Many individual sports are endurance based, making them an ideal way to tire out a high-energy aspie. Even moderately vigorous physical activity will burn off excess energy and trigger the release of endorphins, which not only improve your mood but can reduce anxiety and help you sleep better.
7. Individual sports improve coordination. All sports improve coordination, but individual sports tend to be more “whole body” sports, requiring you to integrate all of the parts of your body to achieve the best possible result. Think of the type of movement required for swimming breaststroke versus the type of movement required for playing shortstop.
Why Exercise is an Essential Part of Managing My Asperger’s
I need to get in at least an hour of running, swimming or walking every day. I need to exercise every morning. When I say need, I’m not kidding. If I didn’t exercise religiously, I would likely be on medication for both anxiety and depression.
Hard physical activity burns up the unwanted chemicals in my body and generates a nice steady flow of good chemicals. Exercise takes the edge off my aspie tendencies and leaves me feeling pleasantly mellow. If my physical activity level falls for a few days in a row, I start feeling miserable. I get short-tempered, cranky and depressed. I lose my emotional balance. I don’t sleep as well. I find it harder to focus.
Being physically active also keeps me connected to my body. I have a tendency to retreat into myself and become disconnected from everything that isn’t inside my head. I’m also still–in spite of decades of sports practice–more clumsy and uncoordinated than the average adult. Being physically active helps me combat this and makes me more physically resilient when I do take an expected tumble.
A Little Different Spin on Physical Activity
One of my favorite bloggers, Annabelle Listic, has written a wonderful post–Kinect with Me!–about how she is using the physical activity of gaming to address some of her concerns (which are different from mine). I’ve never played a video game that requires physical interaction but her post got me thinking that this type of gaming might have many of the same benefits as participating in an individual sport.
Here’s something you probably won’t hear a lot of aspies say: I was a bully.
Being teased and bullied is a painful reality for many young (and some not so young) people with autism. So it’s no surprise that I was teased and bullied as a kid.
Just a few of the many humiliating experiences I remember from childhood: In first grade, I offered to share my kickball with the kids in my neighborhood and they promptly gave it to the German Shepherd who lived across the street and laughed when ripped it apart. A few years later, the kids at the swim club flushed my favorite t-shirt down the toilet. It had my name on the back in sparkly letters so when it was fished out of the clogged plumbing everyone knew exactly who it belonged to. In sixth grade, the biggest smelliest boy in the class trapped me in the coat room and kissed me.
Each time, I took what the bullies doled out and told no one. Like a lot of kids who are bullied, I assumed that I had done something to bring it on myself. If it was my fault, I figured it was up to me to fix it.
My solution: becoming a bully. It didn’t happen overnight and it certainly wasn’t like I woke up one day and decided that from now I’m going to torment other kids. It wasn’t fun or gratifying.
It was an act of self-preservation.
When you’re an aspie, especially an undiagnosed aspie left to fend for yourself, school takes on a survivalist aspect. You’re the antelope and the bullies are a pack of hungry lions. That may sound drastic, but when you’re a kid who has little idea how social group dynamics work, it’s easy to feel like the whole world is out to get you.
For years I put up with the bullying because I didn’t know how to stop it. It never occurred to me to tell an adult or ask for help. Aspies aren’t very good at asking for help. On top of that, I was a little perfectionist and keeping quiet seemed easier than calling attention to my failure to stop the bullies. Because that’s what it felt like to me: a failure. When I looked around, I saw lots of kids who weren’t getting bullied. I didn’t know what magical attribute allowed them to skate through life without being tormented. I knew I didn’t have that ability and I blamed myself for not knowing how to get it.
So I kept trying to figure it out and the bullying continued, on and off, through elementary school. I had a small group of friends in school, which granted me some immunity, but the playground, the bus stop, the walk home from school and playing in my neighborhood were often sources of outright terror.
After that big stinky boy kissed me in sixth grade, he told some other boys that he was going to make me his girlfriend. When one of the boys ominously repeated this to me, I had no idea what it meant. It definitely sounded bad from the way he said it. I could tell by the way he laughed at my stuttering response that he enjoyed seeing how scared and confused I was.
For the rest of the school year, I made sure that I never went in the coat room alone. I waited–often hiding out in the girl’s bathroom–until I was certain the stinky boy had left to walk home before I left to walk along the same route. I constantly watched my back and spent that whole spring living in fear. The school year ended uneventfully and looking back, I think he forgot all about his idea of making me his girlfriend. But at the time, it felt like a very real and scary threat.
At some point during that year, I started to realize that there was an alternative to being afraid all the time. Or maybe being afraid all the time made me desperate. Whatever the cause, one day, when one of the mean girls in the neighborhood said something nasty to me, I said something nasty right back.
It felt good. Maybe too good. That’s how a bully is born.
Soon, instead of just saying mean stuff back to the kids who teased me, I was the one doing the teasing. I developed strange “friendships” with other girls that involved getting along one day and cutting each other to shreds with insults the next. Soon, all of my friends were other mean girls.
When we got bored with harassing each other, we went looking for easy targets. If you’ve ever wondered how a bully recognizes an easy target, I’ll let you in on the secret. She looks for the kids who are just like she used to be. Kids who are loners and outcasts, afraid to fight back, too shy to stick up for themselves. Kids who stand out because of their looks. Kids who don’t have allies to defend them.
It’s easy to spot a victim when you’ve been one yourself.
Within the first few weeks of seventh grade, I found myself sitting across the principal, a grave looking old nun who told me that if I didn’t shape up, I’d be kicked out of school. I was shocked. Didn’t she know I was a good girl? My self-concept hadn’t quite caught up with my behavior. In my mind I was still the shy little brainiac who got picked on all the time.
The principal also told me that every time I pointed one finger at someone else, I was pointing three fingers back at myself. I found this fascinating from a kinesiological point of view but had no idea that she was making a metaphorical point. Kids with Asperger’s don’t do metaphor.
What I did learn that day was not to pick on kids in my grade who had older cousins that would go to the principal. We aspies are nothing if not quick adapters.
Seventh and eighth grades turned out to be one long battle. I was constantly involved in arguments and confrontations. I ruthlessly made fun of weaker kids. If someone else was the butt of the joke, I made sure I was seen laughing at them. I had become a mean girl.
Why? If I knew how painful it was to be bullied and teased, why was I inflicting it on other kids? I’m not sure I could have explained it at the time.. As an adult, I can look back and see that if I got everyone to laugh at another ‘weird’ kid, they weren’t laughing at me. If I made another ‘dorky’ kid the center of attention, for a few minutes I was free from worrying about what everyone was thinking about me.
I’d like to say something happened to make me realize how hurtful my behavior was or some wise adult took me aside and set me straight, but my life as a bully ended more gradually. As time went by, being mean felt less and less good. I started to hate the mean girl I’d become. Being mean became painful and exhausting.
I grew up. In high school, I found interests I could pursue together with people who didn’t tease me. The other mean girls drifted away one by one. I had fewer friends, just one close friend, but I wasn’t so afraid. I no longer needed to wrap myself in the armor of bullying to get through the school day or walk through my neighborhood.
Am I making excuses for my behavior? No. I was a mean girl and maybe the best thing that old nun could have done was to kick me out of seventh grade. That would have been a wake-up call at least. Instead I drifted through three more years of tormenting other kids.
Am I blaming Asperger’s Syndrome for my bullying behavior? No. I was smart enough to know that what I was doing was bad, even if my AS prevented me from grasping all of the ramifications.
Am I sorry? Of course I am.
I’m sorry that I made life miserable for other kids who were just doing their best to get through the day. I’m sorry that no one ever stepped in and stopped me. I’m sorry that I didn’t know I had other options.
If you’ve read this far hoping that I’m going to provide you with a solution to bullying, well, I’m sorry that thirty years on I still have no real answers.
All I have is one aspie girl’s experience–a glimpse of what it’s like to be both the bully and the victim.
Increasingly, experts are realizing that Asperger’s in girls looks different from Asperger’s in boys. Some thoughts on what that means for girls on the spectrum . . .
I was raised to be a good girl. This meant, above all, being seen and not heard. Don’t bother the adults. Don’t make waves.
And this was mostly fine with me. As a child, I spent hours and hours alone. Some of my happiest memories involve going on long bike rides, exploring in the woods, and playing games in my room, all by myself. I remember quite a few fiercely contested games of Risk and Monopoly that pitted me against myself.
My parents never questioned what I did for hours in my room with the door closed. If I disappeared for the afternoon into the woods behind our house, their only concern was that I be home by five-thirty for dinner.
I don’t know what would have happened if I came home at six. I was a good girl and good girls followed the rules.
But the problem with being the good girl, especially if you’re a young undiagnosed aspie, is that good girls are invisible. Aspie boys tend to act out. They have problems with anger management. They’re defiant and oppositional. They’re not team players. They shrink away from competition and refuse to follow the rules.
Years ago these boys got slapped with labels like “juvenile delinquent” and “behavior problem.” Today, out of every ten children diagnosed with Asperger’s syndrome, eight will be boys and two will be girls.
The big question raised by this disparity is: are boys more likely to be aspies or are they just more likely to get diagnosed because their symptoms tend to fit the classic manifestation of AS? Continue reading When Being a Good Girl is Bad for You→
When I was in elementary school, my younger sister used to watch Sesame Street. At 7 or 8, I felt too grown-up for a show about talking puppets but I secretly loved the “one of these things doesn’t belong here” game.
Once on each show, someone would sing:
One of these things is not like the others, One of these things just doesn’t belong, Can you tell which thing is not like the others By the time I finish my song?
Musings of an Aspie 