Tag Archives: social communication

The Doubly Exceptional Child Grows Up

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.

—————-

Remember how, back when you were in school, there was one day of the week that was better than all the others? Maybe it was pizza day or the day you had band practice or art class. There was always one day that you looked forward to all week, right?

In sixth grade, for me that day was Friday. On Friday, I got to leave my regular classroom and walk down the hall to the TAG classroom. TAG stood for Talented and Gifted–a town-wide pilot program that accepted two sixth graders from each of the five elementary schools in our small suburb.

Ten geeks, eight of whom were boys. Ten kids who happily poured over reference books on Blitzkrieg and backgammon while the rest of the town’s sixth graders were wrestling with the math and reading curriculum we’d finished the year before.

Looking back, in addition to being gifted, most of us were probably on the spectrum as well. We were all socially awkward to some degree. None of us had to be asked twice to choose a topic for our Type III independent research projects. We came to class lugging backpacks filled with resources. We had entire libraries at home on the subjects we wanted to explore.

No matter what we asked to study, Mr. M, the aging hippie who taught the class, encouraged us. When I told him I wanted to “study” MAD magazine for my second project, he explained the concept of satire and helped me work out why the comics were funny.

Alfred E. Neuman and his famous tagline
Alfred E. Neuman and his famous tagline

TAG was aspie heaven. If I spent the afternoon curled up in a beanbag with my stack of MAD magazines, no told me to return to my seat. If I was the only kid in the class who brought a bag lunch because I couldn’t stomach the school pizza, no one at the lunch table made fun of me. If I needed to have a joke explained, even a whole magazine full of them, there was Mr. M, sitting at his desk, ready to patiently answer our questions with humor and honesty and not an ounce of condescension.

He thought we were the coolest kids around and in that classroom, we thought we were too.

Doubly Exceptional

Today, kids like the ones I shared the TAG classroom with are labeled doubly exceptional or twice exceptional. Back then we were the geeks and the nerds. Particularly if you were a girl and you were smart, people seemed to expect you to be weird. “Normal” girls weren’t smart and smart girls were quirky.

Adults wrote off our quirks as a byproduct of our intelligence. They sent us out to the playground and expected us to figure out how to navigate the social minefields that lurked within kickball games and jump rope circles. We were smart. We would get it eventually. When we didn’t, they reminded themselves that we were smart and because we were smart, we would get by.

And we did, but not always in the way they hoped we would.

As the concept of giftedness evolved, some theorists put forth the idea of giftedness as “asynchronous development,” suggesting that gifted children reach intellectual milestones faster than other children but lag in cognitive, social and emotional development. Proponents of this theory say that children who are hyperlexic, for example, develop in a fundamentally different way because they have access to advanced ideas at an earlier age than other children.

While this may be true of some gifted children, for many it serves to shift the focus away from their developmental disability–explaining it away as a byproduct of their giftedness. It’s easy to look at this model and assume that these children will just magically catch up with their peers developmentally. After all, they’re smarter than their peers. What’s keeping them from being just as adept in the social and emotional realms?

This is a bit like taking a kid who’s a good baseball player, throwing him in the pool, then being surprised if he sinks like a rock. What do you mean he can’t swim? If he’s athletic enough to hit a baseball, surely he’s athletic enough to swim.

Does my metaphor of a drowning child seem extreme?

If you spent your recesses and bus rides and summers at camp getting mercilessly bullied, physically threatened or worse, you probably wouldn’t think so. For kids who are developmentally disabled but intellectually gifted, expecting them to get by on intelligence alone is the equivalent of throwing them in the deep end of the pool without teaching them to swim first. It’s leaving them to drown–emotionally and mentally–all the while telling them how smart they are.

When a Strength Isn’t Always a Strength

Not that encouraging intellectual strengths is a bad thing. Unlike kids labeled developmentally disabled and given a deficit-based course of therapy designed to “fix” them, doubly exceptional kids have an advantage in their intelligence. It allows them to mask a huge portion of their disability.

Oh, wait–is that really an advantage?

Masking our disability with coping strategies and adaptations means that when we fail to hide something, people assume we’re not trying hard enough. Or we’re being deliberately obstinate. Or that we’re lazy, defiant, insolent, shy, ditzy, or scatterbrained.

“What’s wrong with you?” they ask incredulously. “You can memorize the batting averages of the entire Major League, but you can’t remember to put your homework in your backpack?”

And so the doubly exceptional child grows up thinking, “If only I tried a little harder . . .”

No matter how hard she tries, the refrain never changes.

Can’t hold down a job. Can’t finish a degree. Can’t maintain a relationship. Can’t seem to do the things an average adult can do.

“What’s wrong with you?”

If only I try a little harder . . .

girlalone

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.

crusehdglassFor 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.

My Anxiety is Not Disordered

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

—–

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.

blueanxiety

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.

traffic lightRed 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.

My “NO” Reflex

It’s Monday morning and The Scientist is off from work:

Him: Do you want to go to the diner for breakfast?
Me: No.

We never go to the diner on Monday. It’s not part of The Plan.

We’re hiking through a new trail system:

Him: That trail looks interesting. Let’s try it.
Me: I think we should stick to the route I planned.

I don’t even consider whether the other trail might be more interesting. It’s not in The Plan.

We’re driving home from a quick trip to the mall on Sunday afternoon:
Him: Let’s go to the movies!
Me:  . . . .

That’s the sound of my head exploding. The Scientist, you see, is very spontaneous. I am not. He can decide on a whim to go to the movies. He’ll drive to the theater, pick something that looks decent and is playing soonish, and buy a ticket. Then he’ll find a way to kill time until the movie starts. And he might enjoy the movie or be a little bored or end up thinking it sucks, but he’ll have a good time regardless.

I don’t understand this. At all.

A movie is not part of my daily routine. It requires contingency planning. It raises many many questions that have to be answered before A Plan can be put into place. What will I see? When? Where? Can I get there in time? Will I have to wait? Will I be early enough to get The Right Seat? Do I want popcorn? How long will the movie run? Should I eat before? After? Where? How much time will that require?

And my response to all of these questions?

noNO!

Do not want.

Too hard.

Let’s go home and sit quietly and think about maybe going to the movies tomorrow. When we have A Plan.

Yes, that’s much better.

I have a very strong NO reflex.

Do I want to do something that isn’t part of The Plan? NO

Do I want to unexpectedly deviate from the schedule? Serendipitously try something new? Alter, vary or disrupt my routine at the last minute? NO, NO , and NO

I don’t cope well with unexpected anything. With adequate warning, I manage change pretty well. I vary my schedule, go new places, and try new things without excess trepidation. I need enough lead time so I can mentally prepare myself but once I have a contingency plan, all systems are go.

Without enough warning, however, my instinctive response to anything not in The Plan, is NO. Often an emphatic and even angry NO. Yes, unplanned change makes me irrationally angry.

I don’t stop to consider whether the change might be better than what I’ve planned. I don’t weigh the pros and cons. I’m not easily persuaded. In fact, the more you try to persuade me, the more panicked I’ll start to feel.

And the stupidest part of my NO reflex is that the change often is better. Going out for breakfast with my husband on a Monday morning? That’s actually a great idea. The food would be good. We’d have enjoyable relaxing conversation. What’s not to like about it? Why does the fact that it’s Monday preclude me from enjoying something, well, enjoyable?

There is no good logical answer to this. My fictional Plan isn’t an etched-in-stone prescription for a happy life. It’s a coping mechanism. At times it’s helpful and at times it’s an impediment.

I suspect my NO reflex is related to the weak central coherence that’s a part of Asperger’s. Aspies tend to see the details where others see the whole. The Scientist perceives going to the movies as one cohesive thing. He’s a top-down kind of guy who expects the details to fall into place along the way.

Me? I see going to the movies–or any unexpected event–as a massive overwhelming collection of details. Each detail seems to set off a cascade of more details, creating a complex matrix of endless details, into which I’ll be sucked and never return . . .

Okay, so it’s not quite that bad. But it can feel that way at times.

Being Okay

Consciously thinking about my resistance to unexpected change has led to the idea of “being okay” with things.

When someone asks me to do something unexpectedly, I momentarily shush the NO reflex. I let my initial panic at this unexpected request subside, then I try to consider the options objectively.

Breakfast at the diner on a Monday?

okayEvidence in favor: spending time with my husband, good food, a relaxing start to the week, variety can be refreshing

Evidence against: cuts into my planned work time, higher fat/sugar breakfast might affect my mood temporarily, there may be some sensory overload to deal with

As much as I’m tempted to, I don’t allow myself to include “not in The Plan” as evidence against anything. I remind myself that I can “be okay” with doing something different. I don’t have to feel uncomfortable with an out-of-the-ordinary event.

I’ll admit, this doesn’t always work. Often I’m 80% okay and 20% uncomfortable. But that’s better than not going and beating myself up about it, which is also a strong reflex. It’s not like I enjoy raining on everyone’s parade. The other option–the one I used to force myself into–was reluctantly going and being 100% uncomfortable. Given how unhealthy both of my previous responses were, 20% uncomfortable looks pretty good.

I’m not ready for any unplanned trips to the movies, but I’m happy with the day-to-day decisions I make lately that aren’t an automatic NO. Sometimes I say yes and sometimes I say no. Each response is a conscious, mindful decision, not a reflexive reaction.

I used to feel guilty about my constant string of NOs. There were many and they had a negative effect on my life. I didn’t want to be a terminal spoilsport. I didn’t want to be so rigid about everything.

It wasn’t until I started to understand more about Asperger’s that I was able to make sense of my NO reflex. Before, I saw myself as negative and controlling. A lot of other people saw me that way too. Now I know that difficulty with change is an aspie trait and one that I don’t have to be confined by.

I can choose to say yes and I can choose to say no.

It’s not as simple as it sounds, but it’s worth the effort and the more I practice, the more natural it’s becoming.