Tag Archives: childhood

Chronologically Out of Step

December 12, 2014 musingsofanaspie 91 Comments

When our daughter Jess was little, her dad and I used to take her to see a lot of animated movies. Jess and I really enjoyed them, but The Scientist often dozed off twenty minutes into the film. He slept through Toy Story and Shrek and Monsters Inc. before we all decided that a better plan was to split up when we went to the movies. That way he was free to see the latest action movie while Jess and I watched the newest offering from Pixar or Disney.

The Incredibles, Cars, innumerable sequels in the Monsters, Toy Story and Shrek series. Nightmare Before Christmas. Brave. WALL-E. Coraline. Up. Paranorman . . . Actually, I saw quite a few of those by myself. Jess is all grown up now and The Scientist still isn’t a big fan of kid’s movies. To be fair he stayed awake for the entire Lego Movie and thoroughly enjoyed Big Hero 6, but he wouldn’t have gone to see either if I hadn’t suggested it.

I imagine quite a few adults would consider my interest in animated movies that are mostly marketed to children to be childish. It certainly hasn’t escaped my notice that most of the other adults in the theater are there to chaperone children.

I’m not sure what it is about animated movies that I enjoy so much. Maybe it’s a sense of nostalgia, dating back to the time when I was a young parent and the excitement that we shared as a family going to a new movie. Maybe it’s the sly humor that the writers build in for the adults in the audience alongside the simple feel-good themes that most of the movies have. I’ve even seen it suggested that many of us gravitate toward animation because the exaggerated facial expressions are easy to decipher.

Maybe I just really like animated movies.

Whatever the underlying reason, it’s hard to escape the sense that my enjoyment of the movies is somewhat age inappropriate. I don’t know a lot of other middle-aged women who were as excited as I was about the Lego movie. I do know better than to blurt out “How about that Lego movie?” when talking with most other women my age.

Fortunately not all of my tastes in media run toward children’s programming. In fact, I wouldn’t be surprised if Netflix created a recommendation category for me titled “Dramas with Large Ensemble Casts and Lots of Cursing.” That gives me sufficient fodder for dinner party conversation when the subject turns to movies and TV.

Age Appropriate

The concept of “age appropriate” has been one that’s always haunted me. In elementary school, from about fourth grade, I began to get the sense that most of my peers seemed to somehow older than me. As if they knew something I didn’t.

By the time I got to middle school, that vague sense of being “behind” widened into a very obvious maturity gap. Many of the other girls in my class were developing an interest in dating and fashion and other things that marked a critical right of passage, and in which I had little intrinsic interest. In high school, most of my peers spent the school week looking forward to a weekend of drinking, partying, dating, football games and dances. Again I felt left out, having barely caught up with the concept of dating.

My interests ran more toward listening to music, reading, riding my bike, and shooting baskets in the driveway. At least the ones that I would publicly admit to. I also had a huge fascination with the TV show M*A*S*H and still liked to pull out my collections of baseball cards, stamps, and coins. Occasionally I pulled out my model train set or my Matchbox cars and Barbies were still in my closet. My bed was home to as many stuffed animals as it could hold and I still had a well-worn baseball mitt that I’d gotten in fourth grade.

Instinctively, I knew that there were things that it was “okay” for a teenaged girl to be interested in and interests that were best kept to myself. Sometimes the appropriateness of an interest hinged on gender stereotypes, but just as often it was related to age, either in the sense of something being “too childish” (or sometimes “too adult”) for the age that I currently was.

I spent a lot of years assuming that I would simply catch up with my peers, that I would develop an interest in partying and chasing boys at football games and gossiping on the phone for hours after school each night. When I graduated, without that ever having materialized, I somehow went right on assuming that I would catch up with the adults that I saw around me who invariably seemed much more adult to me than I seemed to myself.

I’m sure this is a typical reaction of many young people as they make the transition into adulthood in their early twenties, however I was still thinking this in my late thirties and early forties. After being diagnosed with Aspergers, I finally realized that there would be no magical catching up with my peers. I was simply different and that was okay.

By Whose Milestones?

The really interesting aspect of this to me, is that while autism is commonly referred to as a developmental delay, no one ever explicitly told me that I was “delayed.” Many years spent comparing myself to my typical peers and seeing the obvious differences had somehow caused me to assume that I was just a few steps behind them.

It’s not surprising to me that many parents look at their autistic children and make the same assumption, often with the encouragement of doctors, teachers, and other professionals in their children’s lives. And in the same way that I passed many years simply assuming that I would catch up, I think many parents spend years operating under the assumption that the goal of their children’s education should be to “catch them up” to their typical peers rather than to equip them in ways that are practical and useful for the child.

Ariane Zurcher recently wrote a blog post about how focusing on the belief that her daughter Emma was developmentally delayed caused her to pursue therapies that in the end she felt were not helpful to Emma. Here’s a quote from that post (emphasis is mine):

“for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal). It meant pursuing all kinds of therapies that never questioned the push for spoken language. It meant not considering AAC devices, because she “had language.” It meant encouraging my daughter to “use your words.” It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught. It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.”

Ariane’s words hint at the danger that lurks in the idea that autistic kids need more than anything to catch up to their nonautistic peers. The emphasis, when working from that assumption, is on getting the child to do things in a way that may not be the best possible way–or even possible at all–for them.

A straightforward and common example is speech. Here are some standard developmental milestones for speech and language:

by 3 months: makes eye contact
by 6 months: imitates sounds and facial expressions
by 12 months: says 1 or 2 words
by 21 months: uses at least 50 words, names objects
by 24 months: begins to use 2 word phrases, uses simple pronouns
by 36 months: asks simple questions

If an autistic child isn’t making eye contact, smiling when smiled at, or saying a couple of words by 18 months, it’s very natural for their parents to look at the other toddlers who are doing all of these things and assume that their child needs professional intervention to help them catch up with their peers.

However, autistic language development varies greatly from the developmental norms. Some autistic people speak early, some at a typical age, others at a later-than-average age and some not at all. Some of us use speech for simple interactions and text or other means for more complex interactions, while others use AAC for all communication. Some of us never reach typical milestones and other leap over milestones at an atypical age.

We are each literally our own developmental milestone chart and to compare an autistic person’s language development to their peers–autistic or not–is both unfair and counterproductive.

The typical developmental milestones are useful as a diagnostic aid, but beyond that they are simply a distraction. Rather than focusing on meeting a set of speech milestones, the emphasis should be on finding communication methods that work reliably for the individual autistic person.

The Fallacy of Mental Age

Another potential pitfall of the developmental delay paradigm is that it leads to the assumption of “mental age” in those individuals who don’t meet developmental milestones on the expected schedule.

If a child is mostly nonspeaking until the age of 5, echolalic for several years after that, and begins to use short phrases at 12, some people will make the assumption that the child not only has the language abilities “of a 2-year-old” but also the thought processes and cognitive abilities of a 2-year-old. As many parents of children who began speaking at a later age can tell you, that’s far from true.

A person who is echolalic at 7-years-old, speaks in short phrases at 12 and uses some sentences at 22 isn’t simply delayed. They have a completely different communication ability than their peers. It’s entirely possible that they’ve been capable of typing in full sentences for a decade or more before they used any sentences verbally. Perhaps not, but unless they’re given the chance to learn to use a variety of communication tools other than speech, no one will know for sure.

Chronologically Out of Step

The inspiration for this post was in part a Facebook discussion that Ariane initiated prior to the post I linked to above and in part some comments on the Intersection of Gender and Autism posts here.

I was struck by how many of us had a sense that we were somehow lagging behind our peers when we were younger or how we still had interests that might be considered age inappropriate by people given to making such judgments. In each of these comments, there was a hint (or more) of embarrassment around these interests.

That got me thinking about all of the ways that I’ve felt chronologically out of step over the years and, more importantly, why. As always, the what of it is fairly easy to quantify, but the why is trickier.

Sometimes the sense that I was lagging behind was tied to not wanting to give up a special interest or to returning to a “childish” special interest for comfort. My love of animated movies and the giant stuffed dog that resides on my couch are a couple of innocuous present-day examples.

Other times, particularly around adolescence, I think missing out on big chunks of social cues and being mostly oblivious to certain types of peer pressure contributed to my sense that I was socially and emotionally younger than my peers. I suspect most kids didn’t necessarily want to start dating in middle school, but they knew that socially it was important to show that they did. It made them seem mature or cool or whatever it was that meant fitting in. Which, incidentally, was exactly the thing I could never seem to intuit and obviously still can’t quite pin down.

Most likely, there were girls who made fun of me in middle school and high school for being so out of step with what was expected but I was mostly too clueless to notice if anyone was whispering about me behind my back. And really, when you have people who will outright tell you that you’re a dork to your face, there isn’t much point in searching for more bad news.

These things, combined with the ever-present sense that I was different from most other kids left, me always feeling the need to catch up but never quite knowing how to do that.

Which brings me to an interesting point that Anna raised in the comments: there is a difference between throwing out the concept of a delay and throwing out all hope of a person learning new skills. She specifically mentioned that as a child, she was left to her own devices a lot and not really pushed to learn organizational or social skills or to further her interests in new ways. She pointed out the value of a “golden middle way” in respecting differences while helping children develop the sort of executive function skills and understanding of the social world that will smooth the road for them a bit as adults.

When Frogs Fly

Finally, it’s important for parents and others who work with autistic kids to understand the difference between, for example, understanding the social world and having neurotypical social skills. The former is achievable to some degree for many of us on the spectrum; the latter not so much.

For example, my social skills are not and never will be those of a typical adult. I don’t have the social skills of a 14-year-old or a 20-year-old or a 30-year-old. It’s not as if I’m simply behind some imaginary developmental curve. My ability to read facial expressions and body language has been “stuck” at the basic level for decades. And I’m fine with that. I have coping mechanisms to make up for some of what I lack and the rest I’ve learned to live with. In the past, I’ve tried to learn how to read more subtle nonverbal communication and finally concluded that it’s not going to happen.

In fact, as I was talking about some preliminary ideas for this post with The Scientist, I told him that teaching me to make consistently natural-looking eye contact would be like teaching a frog to fly. No matter how many times you take the frog up on the roof and toss it off, it’s never going to sprout wings. And it doesn’t need to.

———

A/N: While looking for photos to illustrated this post, I saw the gingerbread people photos and thought “ooh, cute!” and decided to use whimsical gingerbread people family portraits to illustrated my Very Serious Post because it felt delightfully age inappropriate.

Aspie and Female

At the Intersection of Gender and Autism – Part 3

December 4, 2014 musingsofanaspie 175 Comments

The final post of a three part series (read Part 2)

While many of the intersections of autistic and female in my life have been social, there are undeniable physical intersections too.

The arrival of adolescence brought with it hints of what it would mean to be an autistic adult. My first real meltdowns. My first experience with depression. My first confusing encounters with physical intimacy.

With nothing to compare those experiences to, I assumed they were a normal part of being a teenager. Everyone said that being a teenager was hard. I couldn’t dispute that. It didn’t seem necessary to look beyond the explanation of “this is hard for everyone.”

That would become a theme. Pregnancy. Breastfeeding. Postpartum depression. My body’s reaction to birth control pills. Countless books and magazine articles assured me that these things were no walk in the park. Not knowing that I was autistic, I had no idea that I might be having a rougher time of it than the average woman.

It wasn’t until I hit menopause–and the hormonal fireworks that come with it–that I finally realized something was different. Not just with how I was responding to the hormonal changes of perimenopause, but with how I was coping with life in general.

At first, I had no idea that perimenopause had begun. It creeps up slowly and because I was barely out of my thirties, the word menopause wasn’t part of my vocabulary. What I noticed, instead, was that I was having a lot of difficulty coping with the daily demands of life. It was harder to concentrate on work. I wasn’t sleeping well and felt tired all of the time. I was moody and quick to cry over the silliest things. But the most surprising development was a new resistance to socializing. Being around people I don’t know well had always been uncomfortable, but suddenly it felt exhausting.

Ultimately, thanks to the hormonal changes of perimenopause, my autistic traits became too obvious to ignore. This led, in a roundabout way, to my realization that I’m on the spectrum. And that feels like a fitting sequence of events, because the cognitive challenges of menopause are turning out to be much greater than the physical symptoms. Yes, the irregular periods and night sweats and sleep disturbances are hard. But it’s what’s happening in my brain–the way “the change” is changing my cognitive function–that’s taken center stage for me.

Forgetfulness, concentration problems, anxiety, fatigue and mood swings are often listed among the “other symptoms” of perimenopause. Thanks to my autistic brain, I already experience those things to a greater degree than the average woman. Menopause has ramped up the intensity, but I’ve had years to develop coping strategies.

The “symptom” I’ve been struggling the most with is one that you won’t find on any typical list of symptoms. Three years into perimenopause, my language processing has developed some glitches. When I write, I leave out words and make odd substitutions. Speaking is an adventure in trying to remember which noun I’m looking for.

At first, I thought maybe my brain was broken in some new and scary way. When I blogged about my worsening language glitches, I was stunned to hear from dozens of autistic women in their forties and fifties who had similar experiences. Other discussions on menopause revealed more common ground. I wasn’t the only who was suddenly tired of the effort it takes to pass for “normal.” I wasn’t the only one having more meltdowns or struggling to cope with day-to-day responsibilities. There were a lot of “me too” replies, too many for them to be a coincidence.

The autistic female body is fundamentally different, it seems. We start out with an atypical baseline. Add in hormonal fluctuations and we get Menopause: The Deluxe Bonus Edition. Thankfully, I finally have what I lacked during those other hard stages of my life: community. I have other women–women like me–whose experiences I can look to for comfort and wisdom.

Throughout my life, being autistic has shaped my experience of being female. But how has being a woman shaped my experience of being autistic?

Because I’m new to being autistic–that is, to knowing I’m autistic–this is a harder question to answer. My autistic traits are an indelible part of me and always have been. Whether I was aware of them as autistic or not, they influenced me at every stage of my life. Now that I recognize their autistic nature, I can look back and see how they have made me who I am.

Perhaps the greatest impact of gender has been that it helped to cloak my autism. I grew up in a time before Asperger’s existed. Children of my generation were much less likely to be diagnosed with autism if they could speak and were in a mainstream classroom.

My teachers realized early on that I was different from the other kids. They labeled me gifted and designed a special curriculum to keep me busy. They enrolled me in the town’s gifted classes. They tasked me with helping out the reading specialist and the librarian. They even tried to skip me over a grade, a move that my parents wisely blocked, reasoning that my already painfully shy nature would put me at too big a disadvantage with kids two years older than me.

Even as an adult, autism was a hard explanation to consider. I skirted it for years, buying into the Rain Man stereotype, not seeing myself in the descriptions of boys who loved airplane engines and men who had no social lives. It wasn’t until I discovered Tony Attwood’s writing that I realized there is more than one way to be autistic.

Girls can be autistic too. In fact, there was a detail in Dr. Attwood’s book that made me gasp out loud. In explaining how autistic girls often have interests that appear to be the same as typical girls, he described how one of his patients liked to play with Barbies, but instead of making up pretend scenarios for them, she enjoyed lining up the dolls and their clothes.

I felt like I’d been struck by lightning. I had a huge collection of mostly hand-me-down Barbies and their clothing and what I most loved doing was laying all of the items out on my bedroom floor and sorting them by type. I had far less interest in dressing the Barbies or sending them on dates than in ensuring that each of them had exactly the same number of dresses and pants and shirts and shoes. I could spend hours sorting and distributing their clothes. Once that was done, I’d play with them for five minutes and pack everything away until next time.

If an adult walked by and glanced in my room, they would have seen a little girl playing with her dolls. Only if they’d watched carefully would they have noticed that I did the exact same thing every time. Classic autistic behavior camouflaged in a girly disguise. If I’d been a boy with a love of sorting batteries or radio parts, my autistic traits may have been more noticeable.

As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.

Coming to understand that autistic girls and women have somewhat different traits than autistic boys and men made it clear, finally, that there was a place on the spectrum for me. Not only that, there were other women like me, other women who shared similar traits and experiences.

I’d spent decades feeling like I was an anomaly and suddenly here was an entire community of people who understood.

As I’ve read the experiences of other autistic women, I’ve come to realize why autism is described as a spectrum condition. As autistic people, we share much in common but we are also different in many ways. No one is autistic in exactly the same way that I am. This has given me permission to be me–to see myself on the broad spectrums of womanhood and humanity–and to embrace myself as I am.

I’d like to say this is a done deal–I’ve accepted myself and now I can move on, brandishing my shiny new self-image. Perhaps that will be the case one day, but for now, I am a work in progress. Each time I think “yes, this is it, I’ve got it now” I soon find myself unpeeling a new layer, discovering some aspect of myself that I’d tucked safely away.

In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost. I have begun to learn how to share my feelings and speak up for myself and identify my wants and needs. I’ve opened up doors inside me that I was once frightened of even approaching.

There is a joy and a terror in this kind of self-discovery that is akin to the best roller coaster ride ever. Again and again I find myself nervously climbing that first hill, anxiously anticipating the first drop and then, finally, with a shout of joy, giving myself over to the thrill of the ride.

Aspie and Female, Childhood

At the Intersection of Gender and Autism – Part I

November 19, 2014 musingsofanaspie 141 Comments

Note: This is my contribution to the Ultraviolet Voices anthology. It’s nearly 5000 words long, so I’m going to serialize it here over the next 3 weeks.

At five, I wanted to be a boy. I don’t know what I thought being a boy meant. Maybe I thought it meant playing outside in the summer, shirtless and barefoot. Maybe I thought it meant not wearing dresses.

Dresses were all scratchy lace trim and tight elastic sleeves. Stiff patent leather shoes pinched my sensitive feet. Perfume tickled my nose. Tights made my legs itch and had maddening seams at the toes.

Too young to understand sensory sensitivities, I followed my instincts. While other girls favored frilly clothes, I gravitated toward the soft comfort of cotton shirts and worn corduroys.

Somehow, comfort got mixed up with gender in my head. For decades, “dressing like a girl” meant being uncomfortable. And so began a lifelong tension between being female and being autistic.

For a lengthy stretch of adulthood, I had an entire section of my closet that could best be described as aspirational. Pants suits. Dressy blouses. Pumps and sandals. Skirts, bought and worn once for a special occasion. Dresses, bought and worn never, before being spirited off to the thrift store.

I preferred ripped jeans and running shoes, hoodies and baggy t-shirts. Comfortable and comforting, just as they had been in childhood.

Continue reading At the Intersection of Gender and Autism – Part I →

Acceptance, Childhood

The Importance of Play

May 29, 2014 musingsofanaspie 93 Comments

This morning as I was lying on the floor wrestling with my dog for her tennis ball–complete with fake growling on my part and some real growling on her part–I realized how important play is in my life.

Still. At the age of 45.

Since childhood, I’ve enjoyed playing board games and card games, solving puzzles and competing at (some) sports. Basically if there’s a game and I can potentially win at it, or at least enjoy trying, I’m there. But I’m also a huge fan of spontaneous, unstructured, completely pointless play.

Play in its purest form.

Play that arises in the moment and leads to unexpected, unbridled fun.

Which is probably why the assertion that autistic children don’t play “right” is so offensive to me. Why have autism researchers and therapists and clinicians forgotten the meaning of play? Worse, why are autistic kids so often described as not understanding how to play?

In reality, there is no wrong way to play. According to that bastion of knowledge known as Wikipedia, play is “a range of voluntary, intrinsically motivated activities normally associated with recreational pleasure and enjoyment.” If a child is engaging in an intrinsically motivated activity and they’re enjoying it, then they’re doing it right!

The activity could be socially-focused, like having a tea party or goal-focused like disassembling a toaster. It could be something that appears to be completely pointless like watching a bug crawl on a stick or running in circles around the perimeter of the playground or studying the way the wind blows leaves around as they fall from a tree.

Educational Play

But, the experts say, play should be educational–it should promote cognitive, social and physical development.

Kids are little sponges, absorbing knowledge every moment of the day. Filling their growing brains with new and important skills, many learned through play. But does play always have to promote a child’s development? Of course not. Much of the play that typical kids engage in is pointless fun.

But those poor autistic kids, the experts intone somberly, with their delayed development and clueless approach to socializing–they need to suck up every possible ounce of learning from every waking moment.

Thanks to this attitude–to the experts who have forgotten not only what play is supposed to be but what it’s like to be a child–autistic kids get social skills training disguised as play and developmental activities disguised as play and behavioral interventions disguised as play and occupational therapy disguised as play . . .

Except that these things aren’t play at all, because they’re not intrinsically motivated. The child is not directing the activity. The child is not choosing how to fulfill their needs or create enjoyable recreational activities. The child isn’t exploring the world around them in a way that suits them. They’re not discovering their passions and likes and dislikes.

They’re being led by an adult in a structured activity that has the goal of producing desired outcomes for which the child will receive extrinsic rewards. That’s the opposite of play. In fact, that’s the dictionary definition of work.

It’s commendable that clinicians and therapists want therapy to be fun for kids, but interventions disguised as play are a poor–if not a dangerous–substitute for actual play. Autistic kids have the same rights to a childhood as other children. Therapies and supplemental educational activities should be done in addition to playtime, not in place of it.

dandelions

More Than One Way to Play

Somewhere along the line we’ve taken the notion that play is a valuable educational activity and twisted it to mean that one specific type of play is valuable and all play–especially all play engaged in by developmentally disabled children–must be educational.

This is bit like saying “doctors are valuable to society therefore all adults should be doctors.” If that were the case, we would all quickly starve and/or freeze to death because we would be homeless, hungry, and naked, among other things.

Society needs all kinds of people. It needs the kids who play house and school and tea party. And it needs the kids who take apart their toys or categorize their toys or couldn’t care less about conventional toys. It needs the kids who enjoy staring at clouds and the kids who would rather figure out the iPad by themselves than ask a parent and the kids who are content to spend their recess period digging in the dirt with a stick.

Notice that I didn’t say we need the kids who play in social ways but we also need the kids who play in other ways. I said and. This is an intentional word choice. The kids who play in goal-oriented, atypical or apparently pointless ways are equally valuable members of society. They are not the “but also” group, tacked on to the end of the sentence like second class citizens.

I was the kid who spent hours organizing her toys. I was the kid who wandered aimlessly in the woods. I was the kid playing board games alone in her room. By all accounts, I spent my entire childhood playing “wrong.” The funny thing is, nobody told me. My parents encouraged my interests, no matter how odd they were for my age. I learned to follow my passions and I learned to approach the world with curiosity.

That’s true to this day and that’s far more important to me than whether I make small talk properly. I wouldn’t trade my intrinsic motivation, my passion for self-directed learning or my love of discovery for all the social skills in the world. As a child, I intrinsically knew what I needed to learn; through play I built up the skills that have seen me through adulthood.

Because autistic children perceive the world differently, they need to learn different things through play than typical children do. All those hours I spent organizing my stamps and coins and baseball cards and Barbie clothes taught me about pattern recognition and rules–two things that I rely heavily on to navigate the world. Time spent alone in the woods taught me that quiet solitude is essential to surviving in a world that is unnaturally noisy to my senses. Hours of board games played against myself taught me about options and strategies and roleplaying and the countless ways a situation can be approached and still turn out okay.

We are born with an incredibly strong intrinsic motivation for exploring and adapting to the world around us. Forcing an autistic child to play in a certain way not only takes aways their intrinsic drive for exploration, it prevents them from discovering their strengths and finding ways to cope with the complex and often confusing world around them.

Strategies

Asking for Help

October 15, 2013 musingsofanaspie 62 Comments

I’ve never been good at asking for help. A few memorable examples to help you understand how nonexistent my “asking for help” skills were as a kid:

When I was five, I fell out of a tree that I was climbing and landed on my back. As you can imagine, I completely knocked the wind out of myself. Not being able to breathe was scary. Falling out of the tree hurt. Did I run to my parents in tears, wanting to be comforted? Nope. I can still remember squatting on the garage floor, crying, trying to catch my breath.

In third grade, during small group reading time, I only brought one tissue with me to the group reading table. I had a nasty cold and quickly used up that tissue plus both shirt cuffs. So I sat there, right next to the teacher, pretending that I didn’t have snot running down my face and that I wasn’t licking it as it reached my mouth. Eventually I guess she couldn’t take it anymore. She went and got some tissues, setting the box in front of me with the admonition that I should ask next time.

In sixth grade, a boy trapped me in the coat closet and kissed me. Not a cute puppy love kind of kiss. More like a gross, smelly, pinned in the corner so hard I couldn’t breathe kind of thing. I spent the rest of the spring avoiding him. He was bigger and stronger and I was afraid of him. I never told an adult. I never asked for help in keeping myself safe from him.

All three of those memories are traumatic in their own way. I remember feeling scared and alone. I don’t remember even thinking about asking for help. For some reason, among all of the options I came up with, none of them involved going to another person to see if they could assist me in solving my problem.

Continue reading Asking for Help →

Cognitive Function

A Cognitive Defense of Stimming (or Why “Quiet Hands” Makes Math Harder)

June 18, 2013 musingsofanaspie 102 Comments

Thanks to Daniel Kahneman’s fascinating book, “Thinking, Fast and Slow” I’ve discovered the concept of ego depletion.

Coined by Roy Baumeister, the term ego depletion simply means that we have a limited pool of energy to devote to both self-control and cognitive tasks. If we devote energy to, for example, suppressing temptation, we’ll be less willing to solve a difficult math problem or run an extra lap around the track.

Baumeister did a series of landmark experiments to prove the link between self-control and our willingness to engage in difficult cognitive tasks. He found that people who were asked to resist eating chocolate cookies and candy were quicker to give up on solving challenging puzzles than those who were allowed to indulge in the sweets.

What the heck does this have to do with autism, you ask? A lot.

The types of things Baumeister tested for are all related to executive function (EF)–our brain’s ability to regulate our cognitive processes. EF includes things like planning, problem solving, working memory, attention, and initiating, sustaining and inhibiting actions. That last part is really important–that’s where self-control enters the picture.

When we look at the tasks that Baumeister asked his subjects to do, they all call on the brain’s executive function reserves. And impaired EF is a central feature of the typical autistic brain.

What’s More Important: Quiet Hands or Long Division?

Many therapists, teachers and other professionals believe that extinguishing a child’s stimming is necessary for learning to take place. Their justification is that stimming diverts the child’s attention away from the information or task. To help the child focus, they insist on “quiet hands” or “quiet bodies.” The assumption that a child can learn better if he or she suppresses stims has been widely disputed by autistic adults and by some parents, teachers and therapists.

The obvious reason for objecting to “quiet hands”-type instruction is that it shames the child for moving in a way that is natural and comforting for them. Others have written eloquently and in great depth about this subject; I’ve linked to some key pieces below rather than repeating what has already been said.

The case I want to make against “quiet hands” is that in addition to being emotionally damaging, it’s cognitively counterproductive. Think back to the experiment where the people who were told to resist eating chocolate gave up more easily on solving puzzles. Substitute stimming for chocolate and learning long division for solving puzzles. Add in the fact that autistic people have impaired executive function to begin with, making inhibition of actions more challenging, and you can see why asking a child to resist stimming is counterproductive if you’d also like them to learn a new skill.

An Illustration (or Let’s Pretend EF is Something We Can See)

To help us think about executive function in concrete terms, imagine two children in the same math class. Since we can’t actually see or measure EF in a simple way, let’s use imaginary EF “units” to talk about typical versus impaired executive function.

The typical child has 100 units of EF available for math class. The child with ASD has impaired EF, meaning s/he begins the math lesson with 70 units of EF.

Assume the typical child has to exert some self-discipline to attend to the math lesson: 20 EF units, which are devoted to things like staying seated, paying attention, and not talking to classmates. That leaves 80 units that can be devoted to learning math.

Assume the autistic child has to devote twice as much EF (40 units) to self-discipline. Not only does s/he have to do all of the things the typical child is doing (staying seated, paying attention, not talking to classmates), s/he has to inhibit the natural urge to stim. That means s/he is starting out with less EF and devoting more of that small reserve to self-discipline.

Look at the amount of EF each child has left for doing their math work. The autistic child starts off at a disadvantage and is further disadvantaged by a classroom rule that has supposedly been put in place to help him or her.

A Brief Clarification

Before you say, “but how can s/he learn math while spinning around/headbanging/bouncing up and down” let’s clarify what stimming is. Yes, sometimes stimming is all of those things, but it is also fidgeting with a toy, chewing on a chewy, bouncing a leg/foot, flapping a hand, flexing fingers, rocking gently, moving around on an exercise ball used as a chair, or any number of other things that can be done while sitting at a desk.

In fact, every time I stop typing to think of what I want to say next, I start rhythmically tapping my fingers in sequence on my keyboard. That’s stimming. I don’t think about it. I don’t do it on purpose. It isn’t a “behavior.” It happens naturally. It helps me organize my thoughts and stay on task.

It’s the opposite of a distraction.

The Cost of Inhibition

So when I say that a child should be allowed to stim and that stimming is more likely to be cognitively beneficial than distracting, that’s the kind of stimming I’m talking about. Note that in my example, the autistic child was expected to do the things the other typical children were expected to do, such as sitting in their seat and not talking to classmates. They aren’t being allowed to do “whatever they want”–an assumption some people will jump to when anyone raises the notion that autistic children should be allowed to stim.

Maybe while they’re sitting in their seat and working on their math problems, they’re also manipulating a piece of string or a fidget toy with one hand. Maybe they’re sitting on an exercise ball so they can gently roll from side to side. Maybe when they pause to think they flap their hands.

Imagine the red self-discipline portion of the graph shrinking for these kids when they’re allowed to stim while they work. When that happens, the green “solving math problems” portion can grow. When they no longer have to spend EF resources on not stimming, those resources can be repurposed for learning.

If you find it hard to imagine how difficult it is to inhibit stimming for an extended period of time, try this: imagine you have a bad case of poison ivy, you’re not allowed to put any medication on it or to scratch where it itches . . . and I’m going to teach you how to find the limit of a function as x approaches a fixed constant.

How much of that math lesson do you think you’ll retain? Would you even care?

A Few Words About Socially Acceptable Behavior

There is another argument against stimming at school or in other public places: we need to teach autistic kids socially acceptable behavior so other kids/people don’t think they’re weird. Well, I have two things to say about that.

Yes, autistic children should be taught the same social rules as typical children. They should be taught to respect others and all of the rules of politeness and civility that go along with it. But here’s the thing: I was an autistic kid and I can tell you for certain, stimming or not, the other kids already think we’re weird.

Instead of insisting that autistic children adopt unnatural behaviors for the sake of social acceptance, how about working toward changing what is socially acceptable?

**** I’ve used children as an example throughout this piece, but everything here applies to autistic adults as well.

The Doubly Exceptional Child Grows Up

March 14, 2013 musingsofanaspie 97 Comments

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.

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.

Aspie Traits, Growing Up Aspie

Scenes from an Autistic Childhood

February 14, 2013 musingsofanaspie 31 Comments

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:

filmstrip1 — 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.

filmstrip2 — **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.

filmstrip4 — **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.

filmstrip9 — **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.

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.