I was in the cereal aisle in Target, waiting for The Scientist to decide on his cereal purchase, when I overheard this exchange between a mother and her preteen son:
Mother: “James, come and let’s pick out some cereal.”
James (appears from around the corner): “But I haven’t finished looking at all the pasta. I looked at the pasta on the right but I didn’t look at the pasta on the left.”
Mother: “We need to pick out your cereal.”
James (sounding panicked, voice rapidly rising into hysteria): “But I need to look at all the pasta! I haven’t looked at the pasta on the left. I need–”
Mother: “Okay, you can finish looking at the pasta if you promise to come right back here when you’re done and pick out your cereal.”
James: “I promise.” (dashes off around the corner then returns a minute later)
Mother: “Are you done?”
James: (looking happy) “Uh-huh.”
If you’re autistic or you have an autistic child, I bet you know why this conversation made me smile.
James’s mother didn’t say, “You don’t need to look at all the pasta.”
She didn’t say, “That’s ridiculous.”
Or, “You can look at the pasta later (or next time).”
Or, “Stop whining or we’re leaving.”
Or, “Grow up and act your age.” (James was around 10 or 11, I think.)
Or, “Get over here and pick out a box of cereal or I’m taking away your video games for the rest of the day.”
Though she may not understand why James needs to look at all of the pasta when he visits Target, she recognized that preventing him from doing it would result in a meltdown in aisle 13.
And look at the results: The situation was rapidly de-escalated. James was happy. He came back and picked out his cereal as promised, without any prompting. His mother had to wait for him, but an extra minute standing in the cereal aisle beats the hell out of trying to calm a kid having a meltdown in the cereal aisle.
Meet Us Where We Are
There is a lot of talk about how autistic kids (and adults) need to learn flexibility. We’re too rigid, have too many nonfunctional routines. There are elaborate systems for teaching flexible thinking (which is important, I get that). But maybe non-autistic people need to be more flexible, too.
For kids like James, Target is stressful. The noise, the lights, the people, the smells–any or all of these can be overwhelming to autistic individuals. (And yes, based on what I saw I’m assuming–perhaps wrongly, but I doubt it–that he’s on the spectrum.)
If looking at the pasta makes a kid feel better, is that a big deal?
For some parents it might be. Let’s face it–a kid who needs to not only look at the pasta, but to be sure he’s looked at all of it? A little weird. But so what? We all have our coping mechanisms and James has found a way to cope with the stress of Target.
And his mother, bless her, she seemed to get this. She doesn’t look concerned about people judging her for letting her son “have his way.” She doesn’t belittle or shame him for what is, in his mind, a very real need. She doesn’t complain that he’s wasting their time or being uncooperative.
Her response left me wondering how long it took them to get to this point. Because not only did James interrupt his study of the pasta aisle to come when she called him, he returned the second time and picked out his cereal without being prompted. For a kid with such an intense need to study the pasta aisle, this is huge. Huge.
In this one small exchange, he’s learning how to negotiate, how to compromise, how to satisfy his needs while being conscious of his responsibilities, how to keep a promise, how to regulate anxiety and/or sensory overload using coping mechanisms.
Yes, autistics can be rigid. Yes, we have some odd routines or habits. Sometimes this has to be addressed. If James needed to spend an hour studying the pasta aisle, then yeah, big problem.
But a few minutes in the pasta aisle, accepting that the pasta on the left is important, even critical, to this particular kid–that doesn’t have to be a problem at all.
When you have an autistic family member or friend, you’re going to run into situations that you find hard to understand. There will be times when we’re not where you think we should be or where you wish we were.
When this happens, try practicing a little flexibility. Meet us where we are. You might be surprised at the results.
Before I started reading about Asperger’s Syndrome, I had no idea what a special interest was, even though I’ve had them all of my life. A special interest, for those you who aren’t familiar with the term, is an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.”
In other words, an interest in a topic that is either very narrowly defined or very intense. If you’ve never spent time around someone with Asperger’s you might underestimate what those two phrases mean.
I wrote a post about special interests in general earlier this week. Not surprisingly, one of my current special interests is autism. Here’s a glimpse of what a special interest looks like in action for me:
- I spend 3-4 hours a day writing, reading, researching and thinking about Asperger’s Syndrome and autism. I’d spend more, but I have to work, eat, walk the dog, sleep, etc.
- My idea of a fun way to spend an evening is watching a DVD on occupational therapy for sensory dysfunction.
- I scribble notes for blog posts on scraps of paper at all hours of the day because I’m constantly relating things that I see, read, hear and experience back to ASD.
- There are 532 autism- and Asperger’s-related scientific articles saved in my Dropbox. There would be more but I only managed to get as far back as 2009 before I lost access to the PubMed and PsychoInfo databases when I graduated.
- Words like perseverative and motor planning deficit are part of my daily vocabulary.
- My browser has a bookmark list called “aspie links.” It has too many links to reasonably find anything so I’ve also created another bookmark list called “important aspie links.”
- Among the important bookmarks is one for the video of the latest meeting of the Interagency Autism Coordinating Committee, in case I need to watch the chapter on the DSM-V updates again.
- My county library has 51 books and DVDs on Asperger’s and I’m reading/watching them in the order the library catalog lists them. I’m on number 17. When I finish that list, I’ll start on the list of 317 autism-related books/DVDs. In order.
- I have an autism-themed Twitter feed, tumblr, Facebook page, Triberr, newsfeed and blog plus accounts at Wrong Planet and Aspies Central.
- If you get me started talking about anything autism related, I guarantee you’ll lose interest long before I do. Unless you’re a fellow aspie with a special interest in autism . . .
First, I need to say that I hate the phrase “special interest.” It sounds demeaning or patronizing. All I can think of is a doddering old great aunt looking over my shoulder at my stamp collection and saying, “well, isn’t that special.”
I’d much rather use “obsession,” or if that’s too extreme, then “specialized interest,” which is more precisely descriptive. But the term most often used in the ASD community is special interest so I’ll use that here, cringing every time I type it.
Okay, with that bit of editorializing out of the way, we can talk about a topic dear to most aspies’ hearts: the special interest. According to the DSM-IV diagnostic criteria for Asperger’s Syndrome, having an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus” is a core symptom of AS.
You’ll notice there are two parts to that criteria: intensity or focus. A special interest can be an intense interest in a broad subject (architecture) or a narrowly focused interest (mid-12th century Cistercian monasteries). Generally, narrowly focused interests are also intense, but a special interest doesn’t have to be stereotypically narrow to qualify.
What Does a Special Interest Look Like?
A partial list of my special interests, starting in childhood:
- Construction toys (legos, lincoln logs, tinker toys)
- Text (reading, writing, words, found text, Roget’s thesaurus)
- Guinness Book of World Records
- Baseball cards
- Sewing (making my own clothes)
- The stock market
- M*A*S*H (TV show)
- The Doors
- Star Trek:TNG
- Martial Arts
- Human detritus (abandoned places, found objects, discarded things, cemeteries)
- Zen Buddhism
- Dog training
- Astronomy, especially Messier objects
- The Choson Dynasty
- National parks
- Autism (!)
You can look at the list and think, “but everyone has hobbies, what’s so special about yours?” Like much of what differentiates an Asperger’s trait from a general personality quirk, the answer is the degree to which the trait is present.
For example, when I took up running, I didn’t just go out and jog a few times a week. I read books about training for marathons. I found workout plans online and joined a training site to get personalized drills. I learned about Fartlek and track workouts and running technique. I signed up for road races. Ten years later, I spend more on running clothes and shoes than on everyday clothes. I use a heart rate monitor and a distance tracker to record my workouts. If I go on vacation, I pack all of running stuff. I don’t just like to run occasionally; running is an integral part of my life. It fills a very specific need.
Shelter from the Storm
That’s a key differentiator between a run-of the-mill hobby and an Aspergerian special interest. Spending time engaged in a special interest fulfills a specific need for aspies. It’s more than just a pleasant way to pass the time. For me, indulging in a special interest is how I recharge myself. It’s comforting. It allows me to completely immerse myself in something that intensely interests me while tuning out the rest of the world. If you have a favorite movie that you rewatch or a book you like to return to again and again, it’s a bit like that.
Special Interests Gone Wild
The danger in special interests is that they can become consuming. They can take over every conversation, every free minute of the day, every thought, if you let them. They can be a refuge or a hiding place.
There are days when I’m so engrossed in writing and/or work (I’ve made one of my special interests into a career) that I’ll happily spend eight or ten or twelve hours at the computer. I put dinner on the stove and then forget about it until I smell it burning. The sun sets and hours later I realize the house is pitch dark. If the dog didn’t nudge my elbow when it was time for her to go out or be fed, I would forget that she existed.
Clearly this can be a problem.
Another problem can arise if the object of a special interest is socially unacceptable. When my husband read my list of special interests, he jokingly added himself to it. He was being funny, but sometimes aspies do take on another person as a special interest. If that person is a celebrity, the aspie can safely spend hours learning about and admiring that person from afar. But if the person is someone in the aspie’s life, the special interest may be expressed as unwanted attention, harassment or stalking. (You can read an excellent first person account of this issue here: Love or Obsession: When a Person Becomes an Aspie’s Special Interest.)
So while most special interests are “harmless,” if an interest involves behavior that is illegal, taboo or a threat to your or someone else’s health or wellbeing, it may be necessary to seek help in redirecting your attention to a safer alternative.
How Does an Aspie Find a Special Interest?
Special interests tend to find us, rather than the other way around. I have no idea what has drawn me to many of my special interests over the years. Most are things that I have an intense but inexplicable fascination with.
Take abandoned places. I can’t explain what the lure is, but I can spend hours roaming an old townsite or quarry. I’m especially intrigued by abandoned psych wards. I can easily get lost exploring websites like this one: 10 Abandoned Psych Wards Photographers Love Sneaking Into
Like writing, reading, and martial arts, my interest in abandoned places and things has been with me since childhood. But other interests have come and gone over the years. A special interest often arises suddenly, becomes intense for a period (months or years) then disappears just as quickly. My collecting-related interests from childhood were like that. I would spend hours organizing, sorting and rearranging my coins, stamps and baseball cards. I’d talk my parents into driving me to collector’s shows, my tattered value guide tucked under my arm, bouncing with excitement at the prospect of filling a hole in one of my collections.
Then, when my interest in one of my collections suddenly dried up, I’d pack my binders and reference books and collecting paraphernalia away in the closet where they’d sit collecting dust while I spent hours comparing annual editions of the Guinness Book of World Records to see which records had changed or clipping articles about M*A*S*H from magazines so I could add them to my scrapbook.
How Much is Too Much?
Special interests are important to most aspies’ happiness and perhaps to our mental health. If I go through a period where I can’t engage in my special interests, I get agitated and spend a lot of time thinking about what I’d like to be doing. For me, and for a lot of aspies, a special interest is our preferred way of de-stressing, recharging and just plain enjoying ourselves.
But like any good thing, it’s possible to overdo it and veer into unhealthy territory. I think it’s safe to say that a special interest has become too consuming when it keeps you from taking care of daily responsibilities (school, work, hygiene), negatively impacts your health (lack of sleep, poor eating habits), or has a significant negative impact on loved ones (limited social contact, financial burden).
However, there is one case where you get to pursue your special interest all day, five days a week, and society gives you an approving thumbs up: when you turn a special interest into a career. Suddenly, you’re no longer a geek who knows too much about C++ programming, production switchers or eighteenth century fashion. You’re a computer programmer, an audio equipment repair technician or a museum curator. Big difference, right?
I’ve been lucky enough to do this twice, making it perfectly acceptable to dedicate most of my waking hours to a favorite subject. I’ve read and heard about a lot of aspies who’ve done the same with their lifelong special interests. It’s certainly not possible for everyone with Asperger’s to turn a special interest into a job or career, but when it does work out that way, you get to be one of the lucky people who earns a living doing what you love.
For another perspective on having a special interest feels, check out Focusing on Special Interests by Jeannie Davide-Rivera who blogs about Asperger’s at Aspie Writer. I especially enjoyed learning about her first special interest, because we shared some favorite baseball players in common as children.
When you have Asperger’s Syndrome, sometimes life feels one long “if . . . then” statement. If someone is crying, then they’re sad. If someone is sad, then they want a hug. If I give them a hug, then they might feel better.
From childhood I’ve been building up a database of if . . . then rules, hardcoding them into my brain through repetition. This is one of my core coping strategies for dealing with my Asperger’s on a daily basis. Without my if . . .then database, left to my own devices, I’d come across as much more autistic than I do.
If . . . then allows me to pass in an NT world. If . . . then gets me through most days without randomly offending people.
If . . . then, if . . . then, if . . . then.
In high school, I took a computer class that consisted mainly of learning BASIC, the programming language that ran the TRS-80 computers that populated the new and mysterious computer lab. I immediately fell in love with the clean simplicity of computer code. Everything was accounted for. Everything was explicitly declared in the code. If it wasn’t, the computer balked. Computers don’t infer.
How simple life would be if we had to declare everything up front. If every task and interaction had a neatly nested set of if . . .then statements to be stepped through.
I spent hours programming simple text games. If ‘yes’ then ‘turn right’ else ‘turn left.’ It was fantastically binary. The elegant addition of ‘else’ allows for choice, but only one. Turn right or turn left. Open the door or leave it closed. Each choice branching off in two directions, creating a tree of neatly predefined decisions.
If you’re thinking a few steps ahead, you’ve probably anticipated the roadblock my fourteen-year-old self ran up against. Working further and further down the tree, choices multiplying exponentially with each new level, eventually I would be overwhelmed by the possibilities and abandon the game I’d been so excited about an hour before.
If . . . then, if . . . then, if . . . then.
There should have been a lesson there, but I began again and again, erasing the tape that held the code and starting with a fresh scenario. You wake up to find yourself locked in a padded room . . .
The computer was apathetic. Each time I started over, it displayed the same blinking gray cursor. It lacked judgment or even any real memory capacity other than the one I allowed it to have.
There was a predictability in coding that was comforting. The choices were finite. As long as I thought things through, there were no surprises.
I tried imposing this kind of order on the rest of my life, but people seemed reluctant to be programmed. They liked unpredictability. They didn’t need to know how every minute of the day would unfold to enjoy it.
They had their own sets of rules. They seemed reluctant to share them.
If . . . then, if . . . then, if . . . then.
I’ve always been more of an observer than a participant. I watch. I collect data. Patterns emerge. A rule forms. I catalog it. Apply it. Adjust, adapt, reformulate.
Watching is safe. Quiet is safe. This is one of the first rules I learned and it stuck in the way that few have since. If I’m quiet, then I’m not getting yelled at. If I don’t say anything, then there will be nothing for anyone to make fun of. If I watch carefully enough, I can figure out what the rule is here without having to ask and look stupid.
The rules kept me safe. They created a positive feedback loop, naturally rewarding me for following them and punishing me for deviating from them.
But over time, the rules boxed me in. There were rules for school, rules for work. Rules for marriage. Rules for motherhood. Slowly, unconsciously, my life narrowed, and narrowed further still. Like my game collapsing under the weight of exponentially growing options, the rules became more of a burden than a support.
I forgot about the elegant ‘else.’ Choice receded, rigidity crept in.
Breaking the rules was unthinkable. If . . . then. Stay within established parameters. If you can’t find a rule for it, avoid it. Breaking the rules causes dire consequences. So dire that they’re unknown.
If . . . then, if . . . then, if . . . then . . . else.
Understanding Asperger’s Syndrome has helped me rediscover the beauty of else. I have choices. The rules are malleable. I made them; I can unmake them.
The rules are supposed to serve me, not the other way around.
Editing the rules is hard, but I’m trying.
Many stay. They’re useful. Necessary. They’re how I pass. Offer someone a beverage when they visit your house. Leave an empty seat between you and another person on the train. Kiss your husband goodbye when he leaves home in the morning.
Some stay in spite of their apparent uselessness. They’re harmless. They give order to life. Always swim an even number of laps. The bowls face to the left in the dishwasher. Dry your hair first after showering. The blue towel is mine.
The bad rules get deleted, though not without a struggle. The house has to be spotless if guests are visiting. Items on the ‘to do’ list must be finished by the end of the day no matter what. Iced coffee has to come from Dunkin’ Donuts.
People gift me with the rules that I fail to intuit. When you say goodbye, look at the person you’re talking to, not the direction you’re about to walk away in. If you have something important to say, wait until you’re face-to-face to start the conversation.
New rules emerge, from conscious thought not patterns. Think before you automatically say no to a spontaneous change of plans. There is more than one right way to do something.
If . . . then, if . . . then, if . . . then.
I add, delete, overwrite, reorder, sort, categorize, refine. Rules that make my life easier. Rules that help me struggle less. Rules for order and rules for efficiency. Rules to create structure. Rules for navigation.
I develop if . . . then tests for the rules:
1. If a rule prevents me from making a spontaneous choice then it’s too restrictive.
2. If a rule negatively impacts someone I love then it’s probably doing more harm than good.
3. If a rule was created more than five years ago then I may have outgrown it.
4. If a rule makes me sad, angry, tired or anxious then I need to question its origins.
The rules continue to evolve. I’m learning to break the ones that need breaking. Sometimes that’s freeing. It leads to laughter, spontaneous joy, new discoveries. Other times: resignation, regret, disappointment, confusion, fear.
This is life.
Life is not a TRS-80. Life is a wondrous, messy, untamable process.
So here is my newest rule: worry less about the rules.
Be more authentic. Embrace my quirks. Trust myself.
Increasingly, experts are realizing that Asperger’s in girls looks different from Asperger’s in boys. Some thoughts on what that means for girls on the spectrum . . .
I was raised to be a good girl. This meant, above all, being seen and not heard. Don’t bother the adults. Don’t make waves.
And this was mostly fine with me. As a child, I spent hours and hours alone. Some of my happiest memories involve going on long bike rides, exploring in the woods, and playing games in my room, all by myself. I remember quite a few fiercely contested games of Risk and Monopoly that pitted me against myself.
My parents never questioned what I did for hours in my room with the door closed. If I disappeared for the afternoon into the woods behind our house, their only concern was that I be home by five-thirty for dinner.
I don’t know what would have happened if I came home at six. I was a good girl and good girls followed the rules.
But the problem with being the good girl, especially if you’re a young undiagnosed aspie, is that good girls are invisible. Aspie boys tend to act out. They have problems with anger management. They’re defiant and oppositional. They’re not team players. They shrink away from competition and refuse to follow the rules.
Years ago these boys got slapped with labels like “juvenile delinquent” and “behavior problem.” Today, out of every ten children diagnosed with Asperger’s syndrome, eight will be boys and two will be girls.
The big question raised by this disparity is: are boys more likely to be aspies or are they just more likely to get diagnosed because their symptoms tend to fit the classic manifestation of AS?
Gender Differences in Asperger’s Syndrome
Dr. Hans Asperger, the researcher who originally identified the symptoms of Asperger’s syndrome, based his definition of the condition on the boys he studied. He found that although they had average or above-average intelligence, the boys had poor nonverbal communication skills, failed to show empathy with their peers, spoke in an overly formal way, were clumsy and were drawn toward all-absorbing interests that dominated their conversations.
Increasingly, experts are realizing that AS in girls looks different from AS in boys. For example, boys are more likely to have a special interest in something mechanical–like trains, engines, or elevators–usually at a level far more intense than is age-appropriate. I read a case study about a teenage boy who was obsessed with cataloging the different types of outhouses found in his region. And recently, on a tour of Washington, DC I sat behind a boy who knew more about the history of U.S. presidents than the tour guide.
This kind of deep, obscure knowledge is an obvious tipoff that a child is a little different.
Asperger Traits in Girls
What does AS look like in girls? As a kid, I collected a lot of things: coins, stamps, baseball cards. I loved to organize my collections and was thrilled when I discovered a new addition at a coin show or in my monthly stamp club delivery. These were somewhat odd hobbies for a seven- or eight-year-old girl but I also played with Barbies, collected dolls, loved to sew my own clothes and voraciously read Nancy Drew mysteries.
Anyone who looked closely enough would have noticed that I spent more time organizing and categorizing my Barbies and their clothing than actually playing with them. That my Nancy Drew mysteries were invariably lined up on my shelf in numerical order. And all of those clothes I spent hours sewing? I rarely wore them. I just liked the process of cutting out the patterns and putting everything together like a big cloth puzzle.
The signs were there, but they were far more subtle than those being given off by the little boy who can identify every WWII fighter plane or wants his dad to drive him all over the state photographing outhouses.
Social expectations may also play a role in the underdiagnosis of girls. It’s socially acceptable (or even desirable) for a girl to be “shy” or quiet. The same passive tendencies in a boy are perceived as a lack of assertiveness, an unacceptable trait for males in our society.
Throughout childhood I heard that term over and over again. She’s just shy. That excused everything. If I didn’t participate in discussions in school, it was because I was shy. If I sat on the sidelines at a birthday party or went off to read in an empty bedroom at a family party, it was because I was shy. If I didn’t want to be in the school play or I didn’t have many friends–all part of my shyness.
It never occurred to anyone to ask why I liked to be alone or had few friends or avoided social situations. I was a good girl. I didn’t make waves. What was the problem?
Aspie boys are more likely to act out, which is a problem. And aspie boys seem to be less adept than aspie girls at learning to mimic social behaviors. Perhaps this has something to do with the nature of how girls and boys play.
Aspies at Play
As young girls, my friends and I often played ‘school’ or ‘house’. These were cooperative role-playing games in which we acted out scenarios like math class or making dinner. As long as I got to be the teacher or the mother, I loved these games. They played into my need for control and my love of organizing.
If I didn’t get to be the teacher or the mother, the game usually ended in a nasty fight between me and the girl who got that role because I couldn’t stand following directions. Other kids’ rules made no sense to me. They felt all wrong. I had to be in charge or I wasn’t playing. Dr. Tony Attwood describes this as “god mode”–the way that aspie kids need to control every aspect of a social situation to make it safe for them to interact.
For whatever reason, my friends tolerated my god mode and hung around, though not all the time. I remember more than a few shouting matches that left me without anyone to play with for the rest of the day.
Unlike boys’ games where there tend to be winners and losers, girls’ games are often based on how well a girl cooperates with the group to create an enjoyable role-playing scenario. Boys’ games are often competitive–from sports to video games–and the incentive to play lies in the possibility of winning. A boy can fit in by being good at a skill. If he can get to level ten on a popular video game or has a good jump shot, he’ll find other kids to pursue his interests with. For a boy, a specialized skill that’s valued by peers may allow him to get by without learning the nuances of building and maintaining friendships.
This may also be why older aspie boys tend to excel at a practical skill, like building computers, writing software code or solving complex math problems. Even in the absence of excellent social skills, this kind of practical knowledge will give them a foot in the door with a peer group.
From their earliest social interactions, aspie girls have more innate incentives to learn social skills–or at least learn to fake them. This may be another reason why it’s easier for aspie girls to stay under the radar as they make their way through the school system and into adolescence. Their social survival depends on it. Perhaps it’s the girls who fail to adapt who are most easily diagnosed. Their lack of social skills often results in the sort of isolation, bullying and depression that set off alarm bells in parents and teachers.
Aspie kids are incredibly adaptable. We learn early on that we’re different–whether some specialist tells us that we are or not. We’re far more sensitive to the world around us–particularly the social world–than we let on. It may not look like it to others, but most aspie kids are trying really, really hard to fit in.
And maybe that was the problem for some of us. We became too good at being good girls, so good that we became invisible. We slide under the radar right into adolescence or early adulthood, maybe even into middle age, before we realize that being a good girl has its limitations. Or perhaps we go to the opposite extreme–from good girl to bad girl in the blink of eye–and the people around us chalk it up to the trials of adolescence or a mid-life crisis.
It’s been tough, realizing that being a good girl isn’t the cure-all that I was raised to think it was. Sometimes, I’ve learned, being a good girl is bad for you.