Tag Archives: social skills

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.

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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.

Social Skills

Invisible

November 15, 2013 musingsofanaspie 96 Comments

Before we get to today’s post, an announcement: As part of the avalanche of advocacy this week, there will be a flashblog on Monday, Nov 18th. You can find the info at “This is Autism” Flashblog. It’s open to autistic individuals, parents and allies and is accepting writing, video, graphic and comics submissions.

On to the post . . .

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Sometimes [often?] I feel invisible.

I thought this feeling would go away when I grew up. Feeling invisible as a kid is normal, right? Everyone is bigger than you. Smarter, more experienced. And the ones who weren’t bigger or smarter or more experienced, were funnier or prettier or . . . something.

I never quite understood what that something was, just that I didn’t have it. When teachers forgot my name, I shrugged and mumbled it for them. Then mumbled it again when they mistook my mumbling for Sandy or Sydney.

And really, to be honest, I never wanted to be one of those kids who everyone knew. The popular kids. Too much pressure. Too much attention. I like blending in. Getting a “well done” sticker next to the “100%!” on my spelling test was about all the positive attention I needed to keep me satisfied.

Still, I assumed being an adult would mean an end to feeling invisible.

Invisible is like this: I’m at a neighborhood holiday party. I’m sitting on the couch, talking with someone I know and enjoying it. A stranger sits beside me, inserts herself in our conversation as strangers do at neighborhood parties. She asks typical stranger questions. Do you live in the neighborhood? Where are you from? What do you do? We both turn to her and answer, suspending our conversation in favor of this getting-to-know-you talk.

Do I sound resentful of this intrusion? A little, but more in retrospect, because I know what’s coming.

Slowly, gradually, nearly imperceptibly, I feel the three-way conversation is becoming a two-way conversation between the stranger and the person I was talking to. Eventually, I settle back into the couch so they don’t have to keep leaning forward to talk around me. I listen to their words volley back and forth, unable to find a way back into the conversation, which has now turned to a subject they’re both passionate about.

I wait it out some more, picking at the plate of food on my lap, stuck in a rut of smile and nod as they glide from one subject to another. As much as I want to regain a footing in the conversation, I feel like I’ve disappeared from their radar. Bored and uncomfortable, I finally excuse myself, pointing to my empty plate, saying cheerfully that I want to go check out the dessert table. They look surprised and maybe a little chagrined, as if they only just realized that I’d fallen silent ten minutes ago.

It’s easy to assume they had something in common–something I didn’t share–so it was natural for them to become intensely involved in a 2-way conversation. Except that this story repeats itself too often to be “them and not me.”

This is probably fixable. If I was more assertive, made more effort, worked harder at learning conversation skills.

But the invisible feeling comes up at other times too. It’s there when I watch other people take credit for something I’ve done. It’s there when I post something to a group and no one responds. It’s there when someone seems to contact only if they need me to play tech support for their ailing computer. It’s there when someone promises to do something and then forgets, leaving me waiting like an overexcited kid who hasn’t yet realized that there will be no trip to the amusement park today.

That’s it–right there–the powerlessness that creeps up inside me and makes me feel small.

The problem, I see, as I’m writing this, is not so much the practical side of learning to be assertive in social situations. As a child, I was clueless about how to make myself seen and heard. As an adult, I have the potential to do something about feeling invisible, but the feeling itself is now the problem.

To write this, I had to force myself to be with it. Invite it to sit here beside me so I can examine it. And I don’t like it. I don’t want to do the hard work that I know is necessary to befriend the feeling and defang it. But I don’t want to let it haunt me anymore either.

Aspie and Female, Growing Up Aspie

Beyond The Talk: What Else Autistic Girls Need to Know About Puberty

August 30, 2013 musingsofanaspie 214 Comments

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.

———-

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.

In addition to talking to your autistic daughter about all of the things parents normally cover when talking about puberty, consider discussing the following when you feel the timing and circumstances are right: Continue reading Beyond The Talk: What Else Autistic Girls Need to Know About Puberty →

Communication

Saying No

July 11, 2013 musingsofanaspie 68 Comments

Saying “no” is hard. Often when I say no, I feel like I’m disappointing the other person, like I’ve somehow failed.

This probably sounds funny coming from someone who not too long ago wrote about her “no reflex” but there are two categories of no for me. There’s the reactive no–the one that just pops out because I can’t deal with change or spontaneity. I might feel momentarily bad but don’t get all twisted up inside over it.

The other no–the one that hides and cowers and wakes up the butterflies in my stomach with its nervous pacing–is the no that makes me feel like I’m failing. The hard no is often a result of tension between what the other person wants and what I can feel like I can reasonably do. It’s often tied in with adult social obligations, the sort encountered by parents, spouses, adult children, employees: the neighborhood book club, the PTA committee, the office holiday party, the class research project.

When people ask others to join, volunteer, lead or otherwise participate in something, they do it with such a hopeful, expectant tone of voice. The implication is “how can you refuse this excellent thing that we’re all counting on you to be a part of?” And so often, that excellent thing just feels like a burden to me.

Saying no, however, is going to lead people to make assumptions. I’m not pulling my weight. I’m standoffish. We’re not as close as they assumed. I think I’m better than other people. I just don’t care.

All of the other moms are on a committee. All of the other parents have coached a season of rec sports. All of the other wives will be there. All of the other cousins are going to the wedding. All of the other students in the department are attending graduation. All of the other neighbors are baking for the fundraiser.

Of course not literally all of the other ______ are doing anything, but that’s what the person asking will imply. Everyone else is doing it, what aren’t you? Or worse, not enough people are doing it, I’m counting on you to help me out.

This is peer pressure at its most insidious. The hints that doing this thing makes you normal or a better person or not a bad person are powerful, especially when you’ve been raised and socialized to feel like fitting in and being normal are a primary goal.

And here is where we come to the crux of the issue. Autistic children are often grow up with a strong desire to fit in, to be liked, to be normal and/or to not get into trouble. We aren’t necessarily taught that we have the right to decline activities that uncomfortable or that we can sometimes put our needs first.

Learning to Say No

No comes from different places for different people. Strong boundaries. Good social skills. Explicit instruction in saying no as a child. Good self-esteem. A general orneriness.

If no doesn’t come naturally or has been socialized out of us, we can still learn to say no. This is where scripts come in handy. Not only do scripts give us the words that we might find unnatural, they prevent us from accidentally saying yes when we mean no.

Social communication is fraught with code words and unspoken communication. If your no is too soft, it can be misconstrued as a yes. For example, if you mean “no” don’t say “I don’t think so” or “I shouldn’t.” This can be interpreted by the other person as an open invitation to persuasion, negotiation or further discussion. You may find yourself feeling bullied into a “yes” when you already thought you’d said no.

If you mean no, unless you clearly and unambiguously say “no” the other person may think you’re being polite or coy.

But how to do that?

Saying No 101

I’ve always secretly wished there were social skills classes for adults. Then, recently, I realized there is something very similar: etiquette. On a whim, I’d checked Emily Post’s aptly titled Etiquette out of the library. And guess what? It’s loaded with not just advice but scripts. Lots and lots of them.

Emily Post and the people who now edit her books have spent a great deal of time figuring out the polite thing to say in just about every imaginable situation. Did you know that saying no can be as simple as:

“Would you like to come with us to lunch?”

“No, but thank you for inviting me.”

That’s right, you can simply say “No, but thank you for [asking, inviting, including, thinking of] me.” No further explanation necessary! This was a revelation to me because I always thought I needed to provide an excuse when declining an invitation.

You can, of course provide an (honest) excuse if you have one:

“No, I have plans for this weekend, but maybe next time.”

“No, I can’t make it this time. Work/school is too hectic.”

When providing an excuse, be careful not to put off for the future something you have no intention of ever doing. Saying, “Work is really busy right now” opens the door to getting the same request next week. If the request is something you don’t want to do, remove the invitation for a repeat inquiry by saying, “My schedule is full right now. If that changes, I’ll let you know.

And for those of us with food sensitivities and allergies, here are a couple of simple, polite phrases for declining food offered by a host(ess):

For foods you don’t like, a simple “no, thank you” is fine.

For allergies, intolerances or diet restrictions, you can say, “________ is off limits for me, but everything else is wonderful.“

Polite. Straightforward. Inoffensive to your host’s cooking. Again, no need to offer a lengthy explanation or get into why you couldn’t possibly put a single piece of creamed spinach in your mouth without dying of sensory overload.

Beware of Traps

Not everyone knows how to politely take no for answer. People often try to guilt or bully others into saying yes, even after they’ve said no. Don’t fall for mind games:

Just because someone compliments you, you don’t have to say yes to the request that follows. For example, Mary says, “You’re the best web designer/babysitter/cake baker in the world. I know this is last minute, but could you [do some task that you don’t have time or energy for]?” Instead of feeling flattered/guilted into saying yes, you can say, “Thank you, but I don’t have time right now.” Politely acknowledge the compliment, then follow with a firm unapologetic no.
Peer pressure doesn’t end in high school. If someone prefaces a request with “Everyone is . . .” or “You’ve got to . . . ” beware. Don’t cave in to the bullying–instead politely decline with a simple, “I can’t right now.” Repeat as necessary.
Don’t allow others to trick you into doing something by making you feel sorry for them. A simple “I’m sorry you’re feeling overwhelmed, but I have my own deadlines to meet” is sufficient for turning down an unreasonable or inappropriate request.

Even well meaning people sometimes have trouble taking no for an answer, as Mados vividly illustrated in her recent post “Parties & Irrelevant Pity“. Saying no can be a complex social exchange and one that requires a lot of practice to do well. Scripts like the ones Emily Post suggests are a good starting place, especially for those of us who struggle with how to phrase things as well as how to maintain boundaries.

Growing Up Aspie

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.

Health

My Anxiety is Not Disordered

February 28, 2013 musingsofanaspie 77 Comments

Bringing this post back for this month’s Down Wit Dat T21 Blog Hop

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I’ve been thinking and reading a lot about anxiety recently. When I was diagnosed with Asperger’s, I was also diagnosed with Social Anxiety Disorder.

Here’s how I feel about that: Social Anxiety? Yes. Disorder? Not so much.

Disorder implies that my social anxiety is irrational. Is it? Consider this:

“Anxiety at appropriate levels is important for adaptive functioning. There are many environmental hazards that must be avoided and these are often learned through the process of anxiety induction. The resultant anxiety response is learned through the association of certain stimuli with unpleasant consequences.” (from “Autism and the Physiology of Stress and Anxiety”, Romanczyk and Gillis)

Anxiety, like fear, protects us from danger. It raises our guard and makes us wary. In this way, it’s healthy. Without it, we might be less motivated to get an education, to work, to care for our loved ones and ourselves.

What is Anxiety?

Anxiety is a state of worry, concern or dread related to something that hasn’t yet happened and may, in fact, never happen. Think about some things that we typically feel anxious about:

committing to a relationship
giving a major presentation for school or work
becoming a parent
meeting a partner’s family
starting a new job
learning to drive
flying on an airplane for the first time
traveling in a high crime area

When you feel anxious about an upcoming event, you spend more time thinking about it and preparing for it than you would for a more mundane activity. You examine the possible consequences and give extra attention to your actions to ensure the best possible outcome. Anxiety heightens your awareness; heightened awareness sharpens your focus, increasing your safety.

It’s important to note that here and throughout this piece, when I talk about anxiety, I’m referring to appropriate levels of anxiety, not paralyzing anxiety. An appropriate level of anxiety is one that is manageable. I feel nervous in the days before giving an important Powerpoint presentation, but I manage my anxiety and complete the presentation to the best of my ability. An inappropriate level of anxiety is one that prevents a person from completing a necessary or desired activity. For example, if I got so anxious about the presentation that I ended up sick in bed, fainted in the conference room, or lied to avoid presenting.

Not all anxiety is healthy and it’s important to recognize where your anxiety falls on the healthy/unhealthy continuum.

The Function of Social Anxiety in ASD

So that’s how anxiety works in the typical brain. But what about in the autistic brain?

From childhood, autistic people know that we’re missing key information in social situations. We often have difficulty interpreting facial expressions, tone of voice, body language, and non-concrete speech. Some people also struggle with auditory processing and sensory overload in public or group settings.

The results of our social communication challenges can range from inconvenient (missing a joke or not following a conversation) to dangerous (being bullied, taken advantage of or assaulted). There are also negative health consequences–many autistic people need hours or days to physically recover from prolonged or intense social interaction.

Over time, “through the process of anxiety induction,” we realize that certain social situations are “environmental hazards that must be avoided” (as Romanczyk and Gillis described). In other words, because of a very real hazard, we develop anxiety that for us has a very real cause. It isn’t disordered. It’s a defense mechanism, developed through “the association of certain stimuli with unpleasant consequences.”

Social anxiety is, therefore, not only “important for adaptive functioning” in autistic people, it’s essential.

Red Light, Green Light

Autistic social anxiety is not the same as neurotypical social anxiety. If a person with intact social communication abilities has severe anxiety about social situations, then they have a disorder because their fear is irrational. When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

If fear is a red light–a glowing “stop” signal in our brain–then anxiety is a yellow light. It’s the feeling that says, “slow down, caution, stop and pause a moment before continuing down this road.”

We should heed this feeling, not cure ourselves of it.

Appropriate vs. Inappropriate

But, some will say, too much social anxiety and you’ll become a recluse! A hermit! The little old lady shouting at those darn kids to get off her lawn!

Well, yes and no. First of all, allow me to horrify the more socially oriented among you by saying this: people aren’t all that interesting and the rewards of socializing are sometimes overrated. Consider the possibility that all of the following (fictional) people are meeting their needs for social interaction:

the person who lives alone, works at home and in the evening participates in role-playing games, an acting workshop and a drumming circle
the person who lives with a partner and has lunch once a week with a close friend
the person who attends classes full-time and prefers to socialize online in text-based formats outside of class hours
the person who chooses to spend time at home with family and only goes out for necessary errands or events
the person who works around people all day and likes to spend their evenings alone

The social preferences of these people may differ from the majority of their peers, but they aren’t exactly in Grey Gardens territory.

Being anxious about socializing is not the same as completely avoiding social situations. It’s possible to manage social anxiety in the same way we manage anxiety about other things. Someone–NT or autistic–might feel anxious about starting a new job, but that doesn’t mean they won’t do it. Most people have strategies for managing anxiety and autistic people are no different.

What is different is that our social anxiety is automatically pathologized and then “treated” with therapy or medication. We’re told that our fear is irrational and we need to change the way we “think about” social interaction. We’re told that if we just “relax a little” we’ll find social interaction much more enjoyable.

What would be far more helpful is to acknowledge our anxiety as valid and support our right to socialize at our preferred level, in our preferred ways, without being stigmatized for it.

What Anxiety Tells Us

So how does social anxiety keep us safe?

First there is the obvious example: when you have difficulty interpreting nonverbal cues, it can be hard to know when another person is a threat. This can be especially true for autistic women and girls, increasing our chances of becoming the target of sexual assault, sexual abuse or domestic violence. The autistic woman who feels anxious about dating, intimate relationships or venturing into unfamiliar situations has good reason to–the statistics for violence against autistic women are alarming.

Autistic people are also often victims of bullying. The autistic boy or girl who is anxious about recess or the school bus has a large databank of negative interactions feeding that anxiety. Their anxiety tells them that unstructured activities with limited adult supervision are a potential danger zone.

Those are both reasonable examples, right? But what about the anxiety-inducing holiday party, trip to the mall, or vacation? Surely that’s irrational?

Not if you’re forced to think about every social activity in terms of cost. There are many analogies for this concept: spoon theory and the social cup vs. bucket analogy are the most popular. I’ll spare you a new analogy and give you an example instead.

Last spring my nephew and his wife came to visit for a long weekend. He’s one of my favorite nephews and I was looking forward to meeting his new wife. Still, I was anxious. Having two additional people in the house for three days would mean a disrupted schedule, unfamiliar noises and smells, a loss of my precious alone time and lots and lots of talking.

The Scientist and I came up with a schedule–scheduling is essential for me to get through three days of company–and then I set about thinking of ways to conserve my resources. I volunteered to drive because I find it relaxing. We scheduled downtime for me on Saturday afternoon while everyone else went out. I suggested we visit a historical site that I knew well, because it would mean a familiar environment plus the chance to infodump in a socially acceptable way.

We had a great time. They enjoyed the places we visited and the meals I cooked. We laughed a lot and had meaningful conversations. Things couldn’t have gone better. And still, Saturday night as everyone sat around the dinner table talking for hours after the meal was finished, I found myself shaking uncontrollably.

Even with all of my planning, even though I was enjoying myself, the day’s socializing had overwhelmed me. I knew it was coming, had felt myself shutting down as the evening wore on, but I ignored the warning signs. I didn’t want to end a great day on a bad note.

Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.

When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.

Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking–these are not things I need to be cured of. They are signs that I need to take care–yellow lights to be heeded–and I’m learning to listen to them.

Aspie Traits

The High Cost of Self-Censoring (or why stimming is a good thing)

January 3, 2013 musingsofanaspie 104 Comments

As an adult aspie, I often feel that I need to self-censor in social situations. Don’t say the wrong thing. Don’t stare at people. (But don’t forget to make eye contact!) Don’t laugh at the wrong time. Don’t speak too loudly or too softly or too often or too infrequently. And above all, don’t stim.

Stimming makes people nervous. As a kid, I stimmed like mad. I’ve been rewatching old home movies and there I am stimming my way through Santa’s Land and Disney World and every birthday party ever. I’m bouncing, rocking, twitching, flapping, hopping. I’m hammering with anything that remotely resembles a hammer and rubbing my fingers over every nearby surface. I’m constantly in motion.

Four decades later, my stimming is more discreet. You’d have to be watching closely to notice that I’m rubbing my thumbs over the spacebar on my keyboard when I stop typing. Or that I’m fidgeting with a bottle cap under the table at a restaurant or playing with my hair while driving or folding and unfolding a piece of paper while I wait in the bank.

Stimming is so much a part of who I am that I when first read about autistic traits, I completely denied that I have stims.

That little kid in the home movies grew into a teenager who learned to stim more subtly to avoid drawing attention to herself. I’ve found socially acceptable stims like doodling or manipulating objects (pen, stress ball, cell phone) with my hands. I’ve tucked away my more obvious stims for use in private.

Well, mostly. The day of my Asperger’s assessment, I started out stimming discreetly during the interview with the psychologist. By the time I hit the three-hour mark in testing, I found myself rocking back and forth as I tried to work out the spatial reasoning puzzles.

There is too much comfort in stimming–it’s too much of a biological imperative–for me to completely extinguish it.

I recently read that medicating a child to reduce stimming is a good way to help the child concentrate on school work. Yes, if the behaviors are self-harming or severely disruptive medication might be the answer (though if it were my child, redirecting toward a less harmful stim would be my first strategy).

But for kids who are rockers or fidgeters? I have a feeling that the medication does more to make the people around them feel better.

If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch. Have you ever tried to ignore an itch? What if someone told you it was wrong to scratch yourself to relieve an itch? What would that do for your concentration?

Stereotyped Movement (Stereotypies)

Stimming is the most common term used to describe the repetitive movements characteristic of autism, but a more formal term (and the one used in the DSM diagnostic criteria) is stereotyped movement or stereotypies. In this case, “stereotyped” has a different meaning than the one we’re used to. In a behavioral science capacity, stereotyped movement refers to repetitive, nonfunctional movement.

Like so much of what the experts term nonfunctional about autistic behavior, I’d ask nonfunctional for whom?

A Little Insight from our Primate Cousins

Trying to understand what stereotypic movement is and why it happens led me to reading about stereotypic behavior in captive animals. In an issue of “Laboratory Primate Newsletter” (Volume 23, No 4, October 2004) I found a surprising answer.

The researchers concluded that stereotypic behaviors in captive animals aren’t truly abnormal; they’re a reaction to abnormal environmental conditions. In other words, monkeys should spend their days swinging from trees and running about in the jungle, not sitting in small cages. When the monkeys can’t indulge their natural behavioral tendencies, they resort to stereotypical movements like “pacing back and forth, running in circles, somersaulting, rocking, self-biting, earpulling, hair-pulling, eye-poking, etc.”

Sound familiar?

The article goes on to say:

“Many stereotypies are signs of frustration, with the subject being chronically thwarted from expressing basic activities (Reinhardt).”

Yes, stereotypies are related to frustration at being chronically thwarted from expressing basic activities.

Think about all of the things that feel like basic needs to an aspie. Being immersed in a special interest for long periods of time. Being alone. Sticking to routines. Avoiding excessive noise, strong smells, or crowds. How often do we feel thwarted when trying to pursue the things we find comforting? Chronically seems like a pretty good description to me.

When you look at it from the perspective of the animal researchers, aspies are engaging in stimming (stereotypies) not because we’re abnormal but because we’re constantly at odds with our environment.

While it’s impossible for the majority of us to indulge our aspie tendencies 24/7, it’s important to recognize the cost of self-censoring. When I’m happy, the urge to bounce up and down is nearly irrepressible. I’ve learned that it’s okay to bounce when I’m with my family. In fact, my husband’s reaction to my unbridled, childlike joy is often a huge smile. It makes him happy to see me happy, even if my way of showing it is more appropriate to a four-year-old than a forty-three-year-old.

Self-censoring is exhausting. Letting my aspie side rule feels liberating. Why would I want to extinguish that?

Age Appropriate

By Whose Milestones?

The Fallacy of Mental Age

Chronologically Out of Step

When Frogs Fly

Learning to Say No

Saying No 101

Beware of Traps

Doubly Exceptional

When a Strength Isn’t Always a Strength

Now What?

I (Actually Don’t) Know What You’re Thinking

One Rule at a Time

What is Anxiety?

The Function of Social Anxiety in ASD

Red Light, Green Light

Appropriate vs. Inappropriate

What Anxiety Tells Us

Stereotyped Movement (Stereotypies)

A Little Insight from our Primate Cousins

one woman's thoughts about life on the spectrum