All posts by musingsofanaspie

You Can Do Something About That

September 19, 2012 musingsofanaspie 17 Comments

sensory processing, executive function, and learning to recognize discomfort before it leads to a meltdown . . .

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Somewhere in my early reading about Asperger’s, I came across this idea: If something is bothering you, you can do something about it.

That seems like deceptively simple advice. If you’re cold, put on a sweater. If you’re hungry, eat something. If the sun is in your eyes, move or close the blinds or put on your sunglasses.

For a typical person, the idea that you can get up and put on a sweater if you’re cold is probably not an earth-shattering revelation. In fact, it’s something they’ve been instinctively doing since childhood. The typical brain receives an incoming message about physical discomfort, finds a solution and swiftly acts on it:

typical body: I’m cold.
typical brain: We’re underdressed. Stop what we’re doing and put on a sweater.
typical body: Good idea!

This is where the typical person gets up from the computer, goes to the closet and takes out a sweater. But for a lot aspies, the body-brain communication is dulled to the point that we appear to not feel pain, cold or other physical sensations in the way that typical people do. You often hear parents of autistic youngsters say that their children will play outside in the winter without wearing a coat or will injure themselves but continue playing like they haven’t noticed.

Based on my experience, I don’t think we necessarily feel pain or cold less. I think our body-brain communication is muted. As a result it takes a lot more sensory input from our bodies to provoke a reaction in our brains.

Here’s how my brain functions:

body: Something’s not right.
brain: Uh-huh . . .
body: No really. I feel strange.
brain: Yeah yeah . . .
body: I think I’m cold.
brain: Shhh, I’m busy.
body: Yep, definitely cold.
brain: Okay, I get it, you’re cold. Hmmm . . . maybe we should do something about it.
body: Look, I have goose bumps.
brain: I’m thinking!
body: Now I’m shivering.
brain: Okay, go get a sweater.

Even when I get to this point, I may put off stopping what I’m doing to get that sweater because in addition to the sensory processing issues of AS, there is the issue of poor executive function.

To understand the complex brain-body interaction problem that aspies struggle with, it might help to break it down into a few parts and look at them separately first.

Sensory Processing

Those of us with ASD have a tendency to put with stuff until we can’t anymore.

From childhood, we learn that the world is full of annoyances, big and small. Our clothes have scratchy tags and seams. The kids around us never shut up. We suffer through bad smells, weird food, annoying noises, uncomfortable temperatures. The list is endless and it differs for each of us. But I’m betting that one thing we have in common is that we get used to being physically uncomfortable.

Maybe we get used to it not only because we’re more sensitive to physical sensations but because the physical discomfort signal often isn’t strong enough to cause us to act on it. This sounds like a conflicting statement. How can we both more and less sensitive to the physical world?

Often I find myself feeling uncomfortable but I’m so deeply engaged in what I’m doing, that the discomfort hovers at the edges of my consciousness. It exists as low level background noise, not serious enough to make me stop and think about it, but not minor enough that I can completely ignore it. So I put up with it until it becomes truly impossible to ignore.

Of course, by that point it’s long past the time when I should have acted and the minor annoyance has ballooned into serious discomfort.

So what’s going on here? Why can’t an adult with supposedly above average intelligence figure out that she’s cold and the obvious solution is to get up and walk across the room to the closet to get a sweater?

Scientists still aren’t exactly sure how and why aspies process sensory information differently from typical people. The simplest explanation is that we have difficulty prioritizing incoming sensory data. For example, when a typical person walks into a strange place, they quickly and instinctively filter out the unnecessary information from the necessary. In a doctor’s office, they zero in the reception desk. In a coffee shop, their brain immediately sorts out where the ordering line is. In a busy train station, they filter out the distractions to focus on the directional signs pointing them to their platform.

If just reading about those unfamiliar situations raised your anxiety level, you’re not alone. The aspie brain takes one look at the busy train platform gives equal weight to the directional signs, the map on the wall, the crying toddler, the homeless man shaking his cup of coins, the stale underground smell, the roar of the trains, the sound of the bathroom hand dryer, the person brushing up against you, the uneven flooring, and a million other sights, sounds, smells and physical sensations.

Like so many other things, what typical people do instinctively–filter out the sensory noise to identify the relevant inputs–the aspie brain does through a logical process of elimination. Given enough time, I can stand in the busy train station and find the correct directional signs, but it will usually take me longer than it would take most typical people.

So how does this apply to those everyday annoyances that we’re so good at ignoring? Because we seem to receive so much of our environmental data at the same “volume” level, it’s hard for any single piece of information to rise above the rest and get noticed. Typical people instinctively sort those same incoming signals by priority and the “I’m too cold” signal will get mentally red flagged. This red flag message then interrupts the part of the brain that’s engaged in work to say “hey, we’ve got a problem over here.”

The aspie brain doesn’t seem to red flag sensory input until it reaches critical levels that make it physically impossible to ignore. By that point it’s often too late, and a meltdown is imminent.

Executive Function

Unfortunately, the sensory processing issue is only half of the problem. Even when I notice that, yes, I’m too cold, I still tend to ignore that information for as long as possible. Often I’m probably investing more energy in ignoring the annoyance than it would take to get up and remedy the situation.

So it’s not that I’m not uncomfortable. I am. Just not uncomfortable enough to take action.

This is where executive function comes into play. Executive function is an umbrella term that covers things like planning, problem solving, mental flexibility, multi-tasking and initiating and monitoring actions. Poor executive function is why aspies often have trouble switching between tasks, starting and stopping activities and planning ahead. It’s also a big part of why we put up with stuff that could be easily fixed.

For an aspie, the time lag between detecting the annoyance, formulating a plan to deal with it and then taking the required action can be long or even indefinite.

What appears to be a simple problem–this thing is bothering me and I need to do something about it–has very complex neurological roots.

Yeah, I know what you’re thinking. All of this theory stuff is great, but what can I do?

You Can Do Something About That

The first step is being attentive to what your body is telling you. For me, the feeling that something is physically uncomfortable is very specific. It hovers right at the edge of my brain, like an itch that I can’t quite reach. I’ve begun to practice listening for that feeling when I’m engaged in something else.

The second step is consciously prioritizing that feeling as early as possible after you notice it occurring. For example, as I was about halfway through writing this, I started to get the itchy feeling. When I came to the end of a stream of thought I paused and disengaged my mind from writing enough to realize that the sun was shining on my laptop monitor, creating a glare.

The next step is identifying a solution. Is this a problem I can easily fix? How? In the case of the glare, I looked around and realized that there is a shade in the coffee shop window next to me and it has a pull chain that would allow me to lower it.

The final step is, of course, acting on the problem. If the solution is simple, try to act on it right away. It can be hard to stop what you’re doing to take that action, but once you do, you’ll be able to concentrate much better on your activity. I try to use that as an incentive to break away and do what I need to do. Since I pulled the shade down, I’m no longer squinting at my monitor, my face isn’t too warm from the sun and I know I won’t be leaving Starbucks with a headache.

Don’t be surprised if it takes awhile to get the hang of doing something about the little things in life that bug you. At least fifteen minutes passed between the time I started to peripherally sense that something was wrong and the time I lowered the shade.

Retraining our brains is hard work and requires some patience. Rather than feeling bad because a typical person would spend about 15 seconds on a process that took me 15 minutes, I try to focus on the fact that a year ago, I would have just kept right on typing, squinting at the glare on my monitor and feeling miserable.

Motherhood

Asperger’s and Motherhood (Part 2)

September 17, 2012 musingsofanaspie 34 Comments

This is the second in a series of posts about being a mom with Asperger’s–a combination of reflections on how my AS affected my parenting abilities and some advice that I wish someone has given me when I was struggling to make sense of being an unconventional mom. Hopefully some of what I learned the hard way will be useful to other moms in the same situation.

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I know I haven’t been a perfect mother but I also know that the perfect mother doesn’t exist. As moms, we do the best we can under often challenging circumstances. We each have our individual strengths and weaknesses as parents. But aspie parents have some unique strengths and weaknesses.

Everything from issues with sensory overload to problems with social interaction can affect our ability to parent effectively or even competently. In his starkly honest assessment of aspie parents, Dr. Tony Attwood lists some of the many challenges a family may face when one parent has Asperger’s: “the imposition of inflexible routines and expectations . . . the intolerance of noise, mess and any intrusion into the parent’s solitary activities, the perceived invasion of the home by the children’s friends, and a black and white analysis of people.”

These potential challenges may begin to emerge during pregnancy and quickly intensify with the arrival of the baby.

Babies are stressful. They’re unpredictable. They’re messy. They’re demanding. They don’t care if mom is sleep-deprived or suffering from sensory overload or finds breastfeeding painful or needs a couple of hours of alone time to regroup. When you throw in postpartum hormonal fluctuations and the challenges of Asperger’s, it’s no surprise that the result can be epic meltdowns more fit for a toddler than a new mother.

When Jess was a baby, there were days when I felt like I was going to lose my mind if she didn’t stop crying. I remember one day in particular when I found myself standing in the dining room, sobbing uncontrollablly and repeatedly banging my head against the wall. If you’ve ever seen an autistic child have a meltdown, it probably looked something like this. I can only imagine how terrifying this must have been for my husband–watching the mother of his child regress to that point.

But instead of losing his temper or fleeing, he was there to rescue me before I could slip too far into that abyss. He kept me tethered to reality in a concrete way that allowed me to stay connected to Jess when my natural instinct was to withdraw.

Some Tips for New Aspie Moms

One of the keys to surviving the first months of motherhood as an aspie mom is support. All new moms need time to themselves to regroup, but for aspie moms this is especially important.

Honestly, there may be times when you feel like you can’t stand to be around your baby. He won’t stop crying or he won’t settle down for a much anticipated nap or he’s in the mood to play when you’re exhausted. Don’t feel guilty. Needing a timeout doesn’t make you a bad mother.

It’s okay–healthy, in fact–to ask for help from a partner, relative or babysitter so you can take a short break. And if getting an hour to yourself means preventing a meltdown, that’s going to make you a better mom in the long run.

If you find your anxiety level rising at a time when you aren’t able to immediately call on one of the supportive people in your life, it may help to have some strategies you can draw on to de-escalate your stress. Many of things that babies and toddlers find calming may also be soothing for moms with Asperger’s. Here are a few options to consider:

A rocking chair: Lots of adult aspies still find rocking to be soothing and when you’re doing it with a baby in a rocking chair, you’ll find that no one looks at you funny. I had two rocking chairs as a kid and a comfy rocker was one the first things I put on my wish list as a mom-to-be.

Music: Singing to your baby, dancing around the living room with your toddler or just enjoying a favorite song together can all be soothing. For a few months as an infant, the only thing that put my daughter to sleep at night was U2’s Joshua Tree album, played at what was probably an inappropriately loud volume.

Water: Many aspies say that water is calming. If you have access to a swimming pool, you and your child might enjoy spending time in the water together. Once your toddler is old enough, you may find that she enjoys playing in the tub while you soak in a warm bath.

Pets: A dog or cat is often high on the list of expert recommendations for adult aspies. Petting, cuddling or playing quietly with the family pet can be a way to spend time with your child while you de-escalate.

Walking: If you have a quiet place to walk, you may find that exercise combined with fresh air and sunshine is a good way to head off a potential meltdown for you and an instant sleep-inducer for your little one.

Driving: The same goes for a drive along quiet roads. I remember evenings when my husband and I drove around with Jess in the back seat because it seemed like the only way to get an hour of quiet time.

Of course, there’s the toddler who screams the minute you put him in his car seat and the aspie mom who finds driving stressful rather than relaxing. Not all of the strategies that worked for me will work from everyone. Hopefully this list will be a jumping off point for you when it comes to finding “rescue” activities that you can share with your child.

Next in the series: The joys and terrors of toddlerhood

Health

Growing Older on the Autism Spectrum

September 14, 2012 musingsofanaspie 26 Comments

What does it mean to grow older on the spectrum?

Thanks to my Aspergarian nature, I don’t feel middle-aged but my body often tells me otherwise. My hair is going steadily gray and I’ve got the beginnings of arthritis in my hands. My joints pop and crack after I’ve been sitting too long. I’m in denial about my need for reading glasses. Pretty standard growing older stuff, whether you’re on the spectrum or not.

It’s the nonstandard stuff I’ve been . . .

. . . worrying about?

Not quite. I don’t worry about much and certainly not the distant future.

. . . afraid of?

Too strong a word.

. . . wondering about?

That sounds about right. I’m perpetually curious about all sorts of important and unimportant stuff. Before I started writing this, I searched for studies about Asperger’s and aging. Not surprisingly, I only found one and it wasn’t conclusive. (It did have one slightly alarming hypothesis about why autistic adults might not fare as well as neurotypical adults in old age. I’ve summarized it at the bottom of this piece if you’re curious.)

So, here are the things that I’m wondering about as I get older.

1. I wonder if I’ll be able to avoid a serious fall when I’m less physically resilient. I have a tendency to trip, fall and bump into things. No matter how vigilant I am, it happens. In the past month I’ve taken a couple of dives, one while running on a country road and one on the slippery locker room floor after swimming. The first got me a nasty case of road rash and the second resulted in a sore shoulder–relatively minor injuries considering how hard I went crashing to the ground both times. I doubt that will be the case if I take a similar fall a couple of decades from now.

2. I wonder if the recent decline in mental endurance is the beginning of a downward trajectory that will eventually limit my capacity to concentrate or work as I get older. Since hitting my forties, I’ve noticed that I tire more quickly during tasks requiring intense concentration. Powering through is no longer as appealing or even as feasible as it was 10 years ago. To compensate, I’ve been taking more breaks during the work day and giving myself permission to rest when I need to. I set smaller goals and reward myself for reaching them. I try not to have unrealistic expectations of what I can accomplish in a day.

3. I wonder if my decreasing willingness to endure things for the sake of pleasing people will turn into a liability. So far it’s been a positive development–increasingly allowing me to say no when I want or need to–but I can see how, if I’m not careful, I might wake one day to find I’ve become a crazy old cat lady.

4. I wonder if I’ll be able to keep up my exercise routine. Exercise keeps me sane. I need to run or swim regularly to burn off my excess energy and generate the cocktail of good chemicals that balance my brain. I figure this should be possible at least into my sixties, assuming I don’t seriously hurt myself first (see #1).

5. I wonder what life will be like if my husband dies before me. I enjoy his company in a way that I don’t enjoy being with anyone else. He and my daughter are the only two people I feel truly comfortable being around. I can’t imagine wanting to meet someone else. I’ve never lived alone. Whenever I read a new story about a married couple who’ve died together–in a plane crash or some other horrible accident–my first thought is always how lucky they were to have passed away together and avoided being widowed.

Wow, where to go from there? How about some positives?

As I get older, I’m softening up. I’m more patient with myself, more accepting of my faults, more compassionate. I’m less concerned with pleasing others, less worried about being accepted or thought of as “normal”.

Since learning about my Asperger’s, I feel like I’m actively healing the scared little kid that I was and integrating the fragmented parts of my self. I don’t think this would have been possible in my twenties or thirties.

In a lot of ways, I feel like time is my ally. I still have a lot of it left and I’m determined to make the best of it.

Geek Alert: What the Science Says about Aging on the Spectrum

A search for some scientific background about aging and autism turned up only one study, which evaluated people over 60 with autism (mostly with Asperger’s Syndrome) against similar age controls on a variety of cognitive domains. The results were mixed, but the researchers threw out an interesting hypothesis in their discussion. Adults (and adolescents) with ASD tend to use more and larger areas of their brain than neurotypical adults when performing certain cognitive (executive function) tasks. As we age, the NT brain makes a similar adaptation so that elderly NTs also use more and larger parts of their brain to compensate for the degeneration of the brain associated with aging.

The researchers suggested that a faster decline in certain cognitive areas among elderly people with ASD might be a result of the brain’s inability to recruit additional areas for cognitive processing, since this was adaptation that they’d already made earlier in life. On the positive side, there were some areas where adults with ASD performed better than controls. Obviously this is only one study with a relatively small sample size so it what it can tell us about aging on the spectrum is limited. Either way, I suspect we can learn more by listening to older adults on the spectrum than by cognitive testing in the lab. If you’re an autistic person in your fifties or sixties or older, I would love to hear from you in the comments.

Diagnosis

When Your Diploma Comes with a Diagnosis

September 12, 2012 musingsofanaspie 25 Comments

My college diploma arrived today:

It feels good to check “college graduate” off my list of Important Life Accomplishments, but I got something far more important out of college than a degree.

I got Asperger’s Syndrome.

Not literally, of course. I was born with Asperger’s, but I managed to get through more than four decades of my life without knowing it. The process of attending classes made me realize how different I am from most people. Until I ventured out onto campus, I’d carefully structured my life in a way that let me avoid having to face my differences too often or too blatantly.

I’ve been my own boss since I was 19, which has allowed me to decide who I work with and how. I make the rules. I decide what’s acceptable workplace behavior. Walking around in my socks? Yes! Bringing my dog to work? Why not? Eating lunch in my office with the door closed? Totally normal.

By ensuring that I was the one making the rules, I wrapped myself in a cocoon of relative safety. If I didn’t want to do something, I delegated it, hired someone to do it, or avoided it.

Taking classes at a university forced me to follow someone else’s rules if I wanted to succeed. I was judged on not only my academic work but my communication skills. My ideas were subject to scrutiny. I had to make presentations and work in teams. There was no locked door to hide behind while I ate lunch.

This was a lot to put up with. On the other hand, I really wanted to get a degree, to prove that I might be a little late, but I could make it through college.

I did my best to fit in where I could. When things got rough, I sucked it up and muddled through, telling myself that as a ‘returning student’, most of the young people in my class were going to look at me funny anyhow.

It’s hard to say when I went from thinking “I’m a little odd” to “maybe there’s something systemically different about me.” The process was a lot like putting together a puzzle–connecting pieces here and there, assembling bits of the scene but not being able to see the whole picture until dozens of those little connections are made.

A few of the key puzzle pieces:

The sociology class assignment that asked me to describe a time when someone’s body language didn’t match their words. My initial response: What body language? When we shared our answers in class, I discovered how unusual it is to not instinctively notice body language.

The way professors so often asked me if I had a question or looked at me while asking something like is everyone following what I’m saying? I didn’t know it at the time, but I often frown (a sign of confusion) when I’m concentrating.

The universal look of surprise I got from professors after the first test or paper was graded. I rarely speak in class and when I do, it’s a crapshoot whether I’ll completely misinterpret a question, give an off-the-wall response or get the right answer. But write a 30-page paper about the economic impacts of environmental regulation? Yeah, I’m all over that.

Everything Becomes Illuminated on a Random Winter Day

It wasn’t until I came across a feature story on Asperger’s Syndrome last winter that the puzzle pieces started to reveal the bigger picture. While I’d heard of Asperger’s, I’d never considered that it might be something that applied to me. Sure I could see myself in the some of the symptoms, but who didn’t? It was easy to explain away the similarities.

I’d told myself that having Asperger’s was similar to being shy–like a really bad case of shyness–which made it easy to write off. I wasn’t that shy was I? I had a job, a child, a husband. I interacted with people when necessary.

I carefully avoided the qualifiers. I had a job that I’d structured around all of my little neuroses. I had a child to whom I’d stopped saying the words “I love you” as soon as she was old enough to talk. I had a husband who was growing increasingly frustrated with my often cold, controlling behavior. I interacted with people when necessary and no more.

There is a certain element of good fortune that allowed me to get away with all of the hacks and workarounds I’d devised to compensate for my deficits. Through a combination of luck and a willingness to take risks that a lot people wouldn’t, I’d managed to create an environment that capitalized on what I could do and masked all of the things I couldn’t do.

Being in school upset the delicate balance I’d worked so hard to cobble together and suddenly it became hard to avoid the qualifiers.

When I read that feature story, I felt like the writer was talking about me. Not about someone like me, about me. I don’t know what made that story different from the others I’d read about Asperger’s (and there had been many–my fascination with AS alone should have been a big red flag that my subconscious was trying to tell me something).

Maybe I was finally ready to see the big picture and I’d assembled enough of the little clusters of puzzle pieces to make that possible. Whatever the cause, the result was a feeling of lightness–like Asperger’s Syndrome was this giant bucket that would hold all of the things about myself that I’d found confusing and painful and shameful and frustrating and hard. Maybe putting those things in the bucket would mean that I wouldn’t have to juggle them anymore.

Intrigued, I did some more reading and it quickly became obvious that Asperger’s is more than a collection of social and communication problems.

There were dozens of little tells that were undeniably me and had nothing to do with being shy or introverted. The way I often talk too loudly or too quietly. The intense interests in unusual topics. My blunt honesty. My heavy dependence on lists and routines. The way I don’t recognize people “out of context.” My discomfort with compliments. The list was long enough for me to finally admit that it might be a good idea to get evaluated.

As hard as that admission was, once it became clear that I have Asperger’s, my first reaction was relief. It explained so much about my life that I’d thought was my fault–for not trying hard enough or being good enough. It wasn’t an excuse but it was a hell of a good explanation.

Armed with that explanation, I’ve immersed myself in learning more about how my brain works and how that impacts my life. As I’ve learned more about Asperger’s and about myself, the initial relief has given way to a rollercoaster of emotions: anger, grief, resentment, fear, surprise, confusion, acceptance, joy, optimism and increasingly a deep, liberating sense of quiet.

So yeah, the diploma is nice, but what came with it–the knowledge that I have Asperger’s Syndrome–is something that’s changed my life.

Motherhood

Asperger’s and Motherhood (Part 1)

September 10, 2012 musingsofanaspie 42 Comments

This is the first in a series about being a mom with Asperger’s Syndrome–a combination of reflections on how Asperger’s affected my parenting experience and advice that I wish someone has given me as I was struggled to make sense of being an unconventional mom. Hopefully some of what I learned along the way will be useful to other moms (or dads) with Asperger’s.

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If you’re the mother of a child with Asperger’s syndrome, you can find parenting advice to help you navigate every stage of your child’s life.

If you’re a mother with Asperger’s syndrome? Well, good luck with that.

By the time I discovered that I have Asperger’s, I was already the mother of an adult daughter–a fairly well-adjusted, successful adult daughter. Ha! I thought smugly. I might be defective but I’d raised a perfectly normal child.*

When I told my daughter Jess that I have Asperger’s, she laughed it off at first, like maybe I just needed to be talked out of this crazy idea that there was something wrong with me. I’d always been different from other moms. We both knew that. But the idea that I might be autistic was, understandably, a lot to process.

As I explained more about what AS is and described some of the common aspie traits, she started coming up with specific examples of times when I’d done something particularly autistic. Some were funny, others less so.

The more we talked about it, the more relieved she sounded. An AS diagnosis can explain a lot of puzzling behavior, for both the aspie and the people closest to her.

As one point in the conversation, she said, “But you’re so smart!”

Armed with the reading I’d done, I explained the gap between intellectual intelligence and emotional intelligence that a lot of us with AS experience.

She was quiet for a moment. I’m sure that among other things she was puzzled over why I was so excited to be telling her that I have a developmental disorder. It doesn’t sound like a cause for celebration, but I was still in the early flush of discovery. Suddenly so much of my life made sense. I felt like someone had finally given me the user’s manual to my brain.

I hadn’t yet realized how little I knew about AS or myself. I hadn’t yet realized that the owner’s manual was missing a few key pages.

The next question Jess asked made that clear. “So, wait, does that mean you don’t have feelings?”

When a stranger or acquaintance asks this, it’s easy to attribute it to ignorance. One of the most common misconceptions about people with AS is that they’re cold and emotionless. But when your own child asks you if you have feelings, well, that’s one of those times when the reality of AS hits and hits hard.

That’s when twenty-four years of not saying “I love you”–twenty-four years of struggling to express my feelings to my own child–crystallized into one perfect moment of regret, of wishing I’d known all along that there was a reason for how difficult I find it to express what I’m feeling. Because the feelings are there. They may not be quite what the typical mom feels, but I’m absolutely certain that I love my daughter. And I want her to be absolutely certain too.

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*While I would phrase this differently now (substituting different words for “normal” and “defective”) I chose not to revise my original thoughts because they reflect how I honestly felt in those early moments, when I was still learning about Asperger’s Syndrome.

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Next in the Series: The challenges of caring for an infant when you can barely take care of yourself . . .

Growing Up Aspie

Confessions of a Mean Girl

September 7, 2012 musingsofanaspie 9 Comments

Here’s something you probably won’t hear a lot of aspies say: I was a bully.

Being teased and bullied is a painful reality for many young (and some not so young) people with autism. So it’s no surprise that I was teased and bullied as a kid.

Just a few of the many humiliating experiences I remember from childhood: In first grade, I offered to share my kickball with the kids in my neighborhood and they promptly gave it to the German Shepherd who lived across the street and laughed when ripped it apart. A few years later, the kids at the swim club flushed my favorite t-shirt down the toilet. It had my name on the back in sparkly letters so when it was fished out of the clogged plumbing everyone knew exactly who it belonged to. In sixth grade, the biggest smelliest boy in the class trapped me in the coat room and kissed me.

Each time, I took what the bullies doled out and told no one. Like a lot of kids who are bullied, I assumed that I had done something to bring it on myself. If it was my fault, I figured it was up to me to fix it.

My solution: becoming a bully. It didn’t happen overnight and it certainly wasn’t like I woke up one day and decided that from now I’m going to torment other kids. It wasn’t fun or gratifying.

It was an act of self-preservation.

When you’re an aspie, especially an undiagnosed aspie left to fend for yourself, school takes on a survivalist aspect. You’re the antelope and the bullies are a pack of hungry lions. That may sound drastic, but when you’re a kid who has little idea how social group dynamics work, it’s easy to feel like the whole world is out to get you.

For years I put up with the bullying because I didn’t know how to stop it. It never occurred to me to tell an adult or ask for help. Aspies aren’t very good at asking for help. On top of that, I was a little perfectionist and keeping quiet seemed easier than calling attention to my failure to stop the bullies. Because that’s what it felt like to me: a failure. When I looked around, I saw lots of kids who weren’t getting bullied. I didn’t know what magical attribute allowed them to skate through life without being tormented. I knew I didn’t have that ability and I blamed myself for not knowing how to get it.

So I kept trying to figure it out and the bullying continued, on and off, through elementary school. I had a small group of friends in school, which granted me some immunity, but the playground, the bus stop, the walk home from school and playing in my neighborhood were often sources of outright terror.

After that big stinky boy kissed me in sixth grade, he told some other boys that he was going to make me his girlfriend. When one of the boys ominously repeated this to me, I had no idea what it meant. It definitely sounded bad from the way he said it. I could tell by the way he laughed at my stuttering response that he enjoyed seeing how scared and confused I was.

For the rest of the school year, I made sure that I never went in the coat room alone. I waited–often hiding out in the girl’s bathroom–until I was certain the stinky boy had left to walk home before I left to walk along the same route. I constantly watched my back and spent that whole spring living in fear. The school year ended uneventfully and looking back, I think he forgot all about his idea of making me his girlfriend. But at the time, it felt like a very real and scary threat.

At some point during that year, I started to realize that there was an alternative to being afraid all the time. Or maybe being afraid all the time made me desperate. Whatever the cause, one day, when one of the mean girls in the neighborhood said something nasty to me, I said something nasty right back.

It felt good. Maybe too good. That’s how a bully is born.

Soon, instead of just saying mean stuff back to the kids who teased me, I was the one doing the teasing. I developed strange “friendships” with other girls that involved getting along one day and cutting each other to shreds with insults the next. Soon, all of my friends were other mean girls.

When we got bored with harassing each other, we went looking for easy targets. If you’ve ever wondered how a bully recognizes an easy target, I’ll let you in on the secret. She looks for the kids who are just like she used to be. Kids who are loners and outcasts, afraid to fight back, too shy to stick up for themselves. Kids who stand out because of their looks. Kids who don’t have allies to defend them.

It’s easy to spot a victim when you’ve been one yourself.

Within the first few weeks of seventh grade, I found myself sitting across the principal, a grave looking old nun who told me that if I didn’t shape up, I’d be kicked out of school. I was shocked. Didn’t she know I was a good girl? My self-concept hadn’t quite caught up with my behavior. In my mind I was still the shy little brainiac who got picked on all the time.

The principal also told me that every time I pointed one finger at someone else, I was pointing three fingers back at myself. I found this fascinating from a kinesiological point of view but had no idea that she was making a metaphorical point. Kids with Asperger’s don’t do metaphor.

What I did learn that day was not to pick on kids in my grade who had older cousins that would go to the principal. We aspies are nothing if not quick adapters.

Seventh and eighth grades turned out to be one long battle. I was constantly involved in arguments and confrontations. I ruthlessly made fun of weaker kids. If someone else was the butt of the joke, I made sure I was seen laughing at them. I had become a mean girl.

Why? If I knew how painful it was to be bullied and teased, why was I inflicting it on other kids? I’m not sure I could have explained it at the time.. As an adult, I can look back and see that if I got everyone to laugh at another ‘weird’ kid, they weren’t laughing at me. If I made another ‘dorky’ kid the center of attention, for a few minutes I was free from worrying about what everyone was thinking about me.

I’d like to say something happened to make me realize how hurtful my behavior was or some wise adult took me aside and set me straight, but my life as a bully ended more gradually. As time went by, being mean felt less and less good. I started to hate the mean girl I’d become. Being mean became painful and exhausting.

I grew up. In high school, I found interests I could pursue together with people who didn’t tease me. The other mean girls drifted away one by one. I had fewer friends, just one close friend, but I wasn’t so afraid. I no longer needed to wrap myself in the armor of bullying to get through the school day or walk through my neighborhood.

Am I making excuses for my behavior? No. I was a mean girl and maybe the best thing that old nun could have done was to kick me out of seventh grade. That would have been a wake-up call at least. Instead I drifted through three more years of tormenting other kids.

Am I blaming Asperger’s Syndrome for my bullying behavior? No. I was smart enough to know that what I was doing was bad, even if my AS prevented me from grasping all of the ramifications.

Am I sorry? Of course I am.

I’m sorry that I made life miserable for other kids who were just doing their best to get through the day. I’m sorry that no one ever stepped in and stopped me. I’m sorry that I didn’t know I had other options.

If you’ve read this far hoping that I’m going to provide you with a solution to bullying, well, I’m sorry that thirty years on I still have no real answers.

All I have is one aspie girl’s experience–a glimpse of what it’s like to be both the bully and the victim.

Communication

When All You Can Draw is a Blank

September 5, 2012 musingsofanaspie 17 Comments

Right before starting my freshman year in high school, I spent a week visiting my college-age cousin in Brooklyn. It all felt very grown-up, with her living in the studio apartment she shared with a roommate and me on my first extended trip away from home.

She was my favorite cousin–someone I thought was smart and cool and funny–and I assumed she’d have all sorts of exciting things planned for us. Once I got settled in, she asked me, “What do you want to do?”

“I don’t know.” I had no idea. The city seemed impossibly big and, being from the suburbs of Connecticut, I couldn’t imagine what city people did.

She looked disappointed at my answer and that made me a little annoyed. She lived here. Shouldn’t she have a plan? What kind of person invites someone for a week-long visit with no plan?

“What kind of things are there to do?”

She looked at me like what kind of person doesn’t know what there is to do in New York?

We went for a walk around her neighborhood, then we went to paint a room in the brownstone owned by her boyfriend’s medical school professor. The professor was on vacation so we got to cook out in his miniature garden after we’d finished painting.

Throughout the day, the what do you want to do conversation came up a few more times, and each time I could tell she was growing more frustrated, while I grew more panicked.

I truly had no idea what I wanted to do. She couldn’t believe this was possible.

I couldn’t even come up with the simplest suggestion like ‘I want a cheeseburger’ or ‘I want to see the Empire State Building.’ Every time she asked what I wanted to do, my mind went completely blank and then flooded with panicked variations of what’s wrong with me?

Because she–and now her boyfriend and roommate–obviously expected me to know what I wanted to do.

Finally, as we were finishing up dinner at the professor’s brownstone, my cousin handed me the current edition of The New Yorker. “Here,” she said, “look through the events in the front and find something you want to do this week.”

“Like what?” I asked, still not getting it.

“Anything,” she replied.

I flipped through the pages, reading the listings for movies and art shows. Choosing still seemed impossible, even now that I had a finite list to pick from. Comparing each option with all the others was overwhelming, and what if I picked the wrong thing and they thought I was weird? I’d learned by then that I had weird interests for my age and gender.

I eventually put the magazine down and the three of them looked at me expectantly. “What do you guys want to do?” I asked.

“Do you like comedy?” my cousin’s roommate asked.

“Yes!” Yes, I did. I loved sitcoms and stand-up comics. In fact, before my cousin moved away, we used to spend hours in her room listening to her Steve Martin albums.

“Why didn’t you say so?” the roommate asked.

Because even though I like comedy and it was a favorite way to spend time with my cousin, it just didn’t occur to me. For an aspie, this is a familiar occurrence. It happens when someone asks me what I want to eat or what my favorite color is or where I want to go on vacation. In my head, these questions have an infinite number of possible answers and I don’t know how to begin narrowing the possibilities down.

The same is true if someone hands me a piece of paper and says “draw something.” My immediate reaction is “but what?” I’m an avid writer, but I never sit down at the computer unless I have a firm idea of what I want to write. To open a blank document with no idea of where I plan to start writing is unthinkable. It terrifies me and would be completely unproductive. I’d be better off taking a nap because at least then I wouldn’t be beating myself up over how bad I am at coming up with spontaneously creative ideas.

“Just think” is a common phrase of encouragement when someone draws a blank. But for aspies, the harder we try, the more elusive the answer becomes. The biggest problem is that when I “just think” in those situations, I’m devoting 90% of my thoughts and energy to the fact that I can’t think of an answer and how stupid that must be making me look.

I there’s a relatively straightforward explanation for why aspies have difficulty with things like deciding what to order off a menu at a new restaurant. The thought process involved in these types of decisions requires us to apply emotional discrimination to arrive at a choice.

For example, in choosing what I want from a menu, I’ll first eliminate the things I don’t like. Then I have to decide what I’m in the mood for. Pasta or soup? A burger or a salad? This usually involves considering what I’ve had for other meals that day or even in recent days, because I like to balance my meals.

It also takes into consideration what the other people at the table are having. I don’t like to order the same thing as anyone else. If possible I’d like my entree to be complementary to my husband’s so we can share. If he gets steak, I’ll get a vegetarian dish or seafood. Finally, I’ll factor in what the restaurant specializes in, giving those dishes more weight based on the reasoning that a steakhouse isn’t going to have good fish (which is probably faulty logic in many cases).

This process of elimination usually leaves me with a few choices, any of which I’d be perfectly happy eating. I could ask the waitress to bring any one of my “finalists” and whichever showed up, I’d be content with it. But restaurants don’t work like that, so I often end up choosing at random. The waitress is standing by the table and everyone else has ordered and I’ll simply pick the choice I was thinking about last or the one my eyes happen to fall on when I look back at the menu.

At restaurants that I’ve visited more than a few times, I don’t have this problem. I order the same thing every time. Olive Garden? Spaghetti and meatballs. Cleopatra’s? The al meriam plate. Rooftop Pizza? The number 6 pizza with artichoke hearts, goat cheese and sundried tomatoes.

A lot of aspies have food sensitivities, which lead to eating a limited range of foods. But for others–those of us with few or no issues about with what type of foods we can eat– the tendency to eat the same thing over and over may have something to do with how hard it is to choose, how much work we have to put into identifying what we like and want at any given moment.

As an adult I’ve learned some strategies that make me look less clueless. If I’m visiting someone’s house and they ask me what I want to drink, I’ve learned to ask, “What do you have?” This has the dual benefit of narrowing down my choices and giving me a few extra seconds to process the choice I’m going to have to make. Same thing with “what do you want to do?” The easiest reply is “what are you in the mood for?” or “what’s fun to do on a Saturday night around here?” NTs have lots of preferences, often strong ones, and are generally happy to lead.

I’m not suggesting that aspies need to be wishy-washy followers, but when you have trouble making choices, a little help from NT friends or relatives helps shorten the list of possibilities and take away those long terrifying moments of your brain chanting I don’t know over and over again.

How did the rest of that vacation go? My cousin and her friends took me to an improv show in a dark little basement comedy club the next night and I loved it. We went to the Museum of Natural History (I fantasized about living in a museum a kid), a street market, an old art film, and an erotic bakery. Her roommate let me help her conduct a phone survey for her sociology class, counting to every tenth name in a random section of the phonebook and dialing the numbers for her. My cousin’s boyfriend took me to spend a day at the psychiatric facility at Bellevue Hospital where he was studying as part of his medical school work at NYU. His professor (whose house we had painted) showed me the film “Everybody Rides the Carousel” about Erik Erikson’s eight stages of life.

Then I got a tour of the massive medical library and the human dissection lab which had actual corpses in various stages of dissection. There was even a cross-section of a penis in a jar, which was morbidly fascinating for a teenage girl. For an entire week, nobody looked at me like I was a weirdo for enjoying picking names out of a phone book or staring into the chest cavity of a corpse or being fascinated by Erik Erikson. It was one of the best weeks of my teenage years.

And a post-postscript: When I searched for “Everybody Rides the Carousel” I found this clip and was reminded about why I was so fascinated by the film. It has a certain nonlinear, demented quality to it that I still find hard to unravel.

Aspie Life, Social Skills

Literally Speaking: I Just Need a New Pair of Shoes

September 3, 2012 musingsofanaspie 8 Comments

This weekend I decided to buy new running shoes. Normally I go to a store like Kohl’s where I can just pull the boxes off the shelf and try on as many pairs as I want and stare at the choices for endless minutes without the distraction of a salesperson wanting to chat me up.

But I’m living in a new city–one without a Kohl’s nearby (yes, change is hard)–so off to the mall I went. After some bitching and moaning about not finding exactly what I wanted in the few stores I grudgingly walked through (it’s not like Kohl’s! everything’s different!), I discovered that Under Armour sells running shoes. I always wear Nikes but in the spirit of being less rigid, I decided to try something new.

The first pair of shoes I tried on weren’t right but I was determined to give this trying-something-new experiment a fair chance. I was studying the other choices when the salesdude came over to see if I wanted to try another pair.

salesdude: Did those not feel good?
me: They felt too stiff.
salesdude: What are you looking to do?
me: [slight pause while I try to process this apparent non sequitur then give up and go with the obvious] Buy shoes?
[nervous laughter: salesdude because he’s not sure if I’m joking, me because I know by his reaction that I’ve missed something obvious]
salesdude: I mean, like, are you going to use them for crosstraining, running–
me: Yes! Running! [and off I went on a dissertation about what I like in a running shoe]

The pause, the uncertain answer, the literal interpretation of an unexpected, off-script question–these are things that unmask me to strangers. One minute I’m the average customer and the next I’m the oddball who can’t answer a simple question and cares a little too much about how the soles of her running shoes are constructed.

But overall, in spite of the mall-induced crankiness, the shopping was a success because I got a new pair of these and I love them: