This morning I was reading an article about teaching Autistic children. It emphasized that teachers are more effective if they take the perspective of the children they teach.
My first thought was can an allistic (non-autistic) teacher truly take the perspective of an Autistic child? They can try. They can educate themselves about autism and autistic traits. They can observe Autistic people and create situation-based rules. They can make assumptions about what an Autistic child is thinking or why they are behaving in a certain way. They can ask Autistic individuals for input and apply that input to their interactions with their Autistic students.
But they can never, ever truly take the perspective an Autistic child. Why? Because they aren’t Autistic. They can’t know what it feels like to be Autistic.
Do you see where I’m going with this?
When you think about it that way, Autistic people aren’t any more impaired than allistic people in perspective taking. We can take the perspective of other Autistic people quite easily.
It’s taking the perspective of the other 99% of the population that’s challenging. Why? Because allistic thinking doesn’t come naturally to us, no more than Autistic thinking comes naturally to an allistic person.
Experts say that Autistic people don’t realize that others have thoughts that are different from their own. If we’re talking about Autistic adults, this is just silly. Of course we know that other people have thoughts that are different from our own. We don’t always have a good idea what those thoughts (or feelings or motivations) are; for better or worse, we make assumptions based on our own thoughts, feelings and experience.
Allistic people do the exact same thing. Luckily for them, the majority of people around them are also allistic. By default, the odds are quite high that they’ll make a correct assumption about another person’s perspective based on their own perspective. And when a non-autistic person makes an error in perspective taking, we don’t say they’re impaired, we call it a misunderstanding.
If an allistic person tries to take the perspective of an Autistic person based on their own thoughts, motivations and experience, the results can be wildly off the mark. A good example is when teachers and caregivers treat meltdowns as an intentional behavior designed to elicit a specific response. Equating a meltdown with a typical temper tantrum is a massive failure in perspective taking. So much so, that from an Autistic perspective it would be funny if it wasn’t so sad and harmful.
If 99% of the population were Autistic, it would be easy to label the allistic minority “impaired” when they failed to instinctively grasp why their family members all regularly had meltdowns or why everyone on the bus except them was stimming or why their new landlord communicated by typing instead of speaking.
Does that sound like a scary world to live in? I suspect for some it might. It’s hard being surrounded by people whose behavior you don’t understand.
Welcome to the Autistic experience.
We are not born instinctively understanding the allistic world, any more than allistic people are born instinctively understanding the Autistic experience.
As an adult aspie, I often feel that I need to self-censor in social situations. Don’t say the wrong thing. Don’t stare at people. (But don’t forget to make eye contact!) Don’t laugh at the wrong time. Don’t speak too loudly or too softly or too often or too infrequently. And above all, don’t stim.
Stimming makes people nervous. As a kid, I stimmed like mad. I’ve been rewatching old home movies and there I am stimming my way through Santa’s Land and Disney World and every birthday party ever. I’m bouncing, rocking, twitching, flapping, hopping. I’m hammering with anything that remotely resembles a hammer and rubbing my fingers over every nearby surface. I’m constantly in motion.
Four decades later, my stimming is more discreet. You’d have to be watching closely to notice that I’m rubbing my thumbs over the spacebar on my keyboard when I stop typing. Or that I’m fidgeting with a bottle cap under the table at a restaurant or playing with my hair while driving or folding and unfolding a piece of paper while I wait in the bank.
Stimming is so much a part of who I am that I when first read about autistic traits, I completely denied that I have stims.
That little kid in the home movies grew into a teenager who learned to stim more subtly to avoid drawing attention to herself. I’ve found socially acceptable stims like doodling or manipulating objects (pen, stress ball, cell phone) with my hands. I’ve tucked away my more obvious stims for use in private.
Well, mostly. The day of my Asperger’s assessment, I started out stimming discreetly during the interview with the psychologist. By the time I hit the three-hour mark in testing, I found myself rocking back and forth as I tried to work out the spatial reasoning puzzles.
There is too much comfort in stimming–it’s too much of a biological imperative–for me to completely extinguish it.
I recently read that medicating a child to reduce stimming is a good way to help the child concentrate on school work. Yes, if the behaviors are self-harming or severely disruptive medication might be the answer (though if it were my child, redirecting toward a less harmful stim would be my first strategy).
But for kids who are rockers or fidgeters? I have a feeling that the medication does more to make the people around them feel better.
If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch. Have you ever tried to ignore an itch? What if someone told you it was wrong to scratch yourself to relieve an itch? What would that do for your concentration?
Stereotyped Movement (Stereotypies)
Stimming is the most common term used to describe the repetitive movements characteristic of autism, but a more formal term (and the one used in the DSM diagnostic criteria) is stereotyped movement or stereotypies. In this case, “stereotyped” has a different meaning than the one we’re used to. In a behavioral science capacity, stereotyped movement refers to repetitive, nonfunctional movement.
Like so much of what the experts term nonfunctional about autistic behavior, I’d ask nonfunctional for whom?
The researchers concluded that stereotypic behaviors in captive animals aren’t truly abnormal; they’re a reaction to abnormal environmental conditions. In other words, monkeys should spend their days swinging from trees and running about in the jungle, not sitting in small cages. When the monkeys can’t indulge their natural behavioral tendencies, they resort to stereotypical movements like “pacing back and forth, running in circles, somersaulting, rocking, self-biting, earpulling, hair-pulling, eye-poking, etc.”
The article goes on to say:
“Many stereotypies are signs of frustration, with the subject being chronically thwarted from expressing basic activities (Reinhardt).”
Yes, stereotypies are related to frustration at being chronically thwarted from expressing basic activities.
Think about all of the things that feel like basic needs to an aspie. Being immersed in a special interest for long periods of time. Being alone. Sticking to routines. Avoiding excessive noise, strong smells, or crowds. How often do we feel thwarted when trying to pursue the things we find comforting? Chronically seems like a pretty good description to me.
When you look at it from the perspective of the animal researchers, aspies are engaging in stimming (stereotypies) not because we’re abnormal but because we’re constantly at odds with our environment.
While it’s impossible for the majority of us to indulge our aspie tendencies 24/7, it’s important to recognize the cost of self-censoring. When I’m happy, the urge to bounce up and down is nearly irrepressible. I’ve learned that it’s okay to bounce when I’m with my family. In fact, my husband’s reaction to my unbridled, childlike joy is often a huge smile. It makes him happy to see me happy, even if my way of showing it is more appropriate to a four-year-old than a forty-three-year-old.
Self-censoring is exhausting. Letting my aspie side rule feels liberating. Why would I want to extinguish that?
The blog will be on hiatus through the holidays. Thank you for reading, commenting and sharing these past few months. I hope you all have a safe, happy and peaceful holiday and I’ll see you in 2013!
I was going to start this out by saying that being an aspie has certain challenges. I was going to acknowledge how those challenges can be quite severe and then talk about the positive traits of Asperger’s in a measured, careful way.
But you know what? Screw that. Today I’m going to celebrate being an aspie.
I’m going to celebrate myself.
My Aspie Strengths (or How Asperger’s Has Made Me Awesome)
Many of my Asperger’s traits are double-edge swords, gifting me simultaneously with challenges and strengths. Impaired perspective taking? It makes it harder for me to work out people’s intentions but it also makes me nonjudgmental. Trouble with generalizing? That means I have to learn a similar lesson many times over, but gifts me with a dogged optimism and unconventional problem solving skills.
Curiously, some of my aspie strengths are a direct result of my funky wiring but many are coping mechanisms that I’ve developed to survive in a neurotypical world. Asperger’s has made me a survivor–forced me to adapt, by choice and necessity. The result is a unique set of strengths. Here they are, in no particular order:
I’m nonjudgmental. I take people at face value and will give someone the benefit of the doubt until they prove me wrong. A lifetime of being judged on appearance and first impressions will do that to you, I suppose.
I have a strong attachment to the truth. Telling it. Seeking it. Hearing it. If you ask me a question, you’ll get an honest answer. Perhaps more honest than you’d like. If you lie to me, I won’t forget it. I value honesty above many other traits–probably because I’m so bad at detecting dishonesty.
I’m curious. Insatiably so. I love learning, discovering, knowing. If you’re passionate about something and you want to share it with me, I’ll listen with genuine enthusiasm. My interests are wide-ranging and ever-evolving. My need for knowledge feels limitless, exciting and empowering. Give me an answer and I’ll have a handful of questions in reply.
I’m loyal. My attachments to people are few, but when I do form a bond with someone it’s a strong one. I will stand up for the people I care about in the face of a great deal of opposition. When Temple Grandin said that an autistic child will run into a burning building to save a person they love, she wasn’t kidding. That’s me in a nutshell.
I’m sincere. Perhaps naively so. I don’t have the patience or energy to be manipulative. I’m generally good-intentioned. When I do something for another person, I do it wholeheartedly. People often seem puzzled by my sincerity, disbelieving, as if being sincere is in itself some elaborate form of manipulation.
I have well-defined values. The black and white thinking of Asperger’s means that I’ve developed an elaborate and clearly delimited value system. This can be a blessing and a curse. There is a thin line between being principled and being stubbornly dogmatic. At most times, though, my values are my compass and my rudder, helping me navigate the ambiguities of a neurotypical world.
I’m an unconventional problem solver. I’m not afraid to ask wild questions or examine solutions that appear to have little hope of working. My instincts can get way ahead of my ability to verbalize them. Often, I’m told that things won’t work or don’t make sense–right up until I go ahead and do what I have in mind and it works. Or doesn’t. It’s a crapshoot, but that does little to dent my confidence and willingness to try.
I’m an optimist. I live in the here and now. I have few regrets. I view situations starting from zero. Aspies aren’t very good at generalizing from one occurrence to another similar occurrence, which I think leads to an irrational level of optimism. Sure something went wrong in the past, but (my brain always seems to say) this time will be different. Sometimes it is. Either way, I’ve found that taking the optimistic view of life makes me happy.
My Aspie Superpowers (or How Asperger’s Has Made Me Who I Am)
One of the myths of Asperger’s is that all aspies are savants–that we’re born with some profound skill, like the ability to name the day of the week for any date in history, draw the New York subway system from memory, or do complex mathematical calculations in our heads.
Some aspies are savants, but sadly, I have no savant skills. I’ve always been fascinated by people who do. I think it would be amazing to have a photographic memory or to instinctively understand a system like mathematics.
Like a lot of aspies, I do have a few overly developed traits. They aren’t at the level of a savant skill, but I’ve started to think of them as my aspie superpowers. They’re the things about me that people comment on as being out of the ordinary or above average. They’re a significant part of my self-identity:
I’m perceptive and detail oriented. I notice everything: changes and irregularities, patterns and habits. I can analyze the hell out of things. I see patterns where most people don’t. My affinity for details began as a coping mechanism, I think–a way to identify patterns in social situations that I couldn’t work out instinctively. Now it’s become my default mode for making sense of the world around me.
I have a high IQ. This may not seem related to Asperger’s until you think about what an IQ test is: logic, problem solving, pattern recognition. Especially pattern recognition. The question about what number comes next in the sequence? Pattern recognition. Which shape is missing in the grid? Pattern recognition. Is the sum of the odd numbers between 1 and 12 an even number? Yep, that one is pattern recognition, too. Or it is if your brain works like mine.
I’m calm in a crisis. If something goes wrong, I have an almost superhuman ability to separate myself from the situation and think clearly. Poor executive function combined with impaired perspective taking lets me focus on the facts at hand when others get overwhelmed by panic or “worst case scenario” thinking.
I’m dependable and disciplined. Both of these have roots in my Aspergarian need for routine. Once I get a routine in place, I can do the same thing day after day without tiring of it. I can keep the books, walk the dog, sort the mail–day after day, like clockwork–as long as it’s part of my daily schedule. I’m the kind of person people rely on. I get things done.
I’m determined. Perseveration has a huge upside. If a problem or task catches my attention, I’ll go at it like a doberman with a ragdoll. I’ll work at something long past the time when a more rational person would throw in the towel. A big part of success for me is simply not giving up too soon.
Okay, looking back on that list, it looks rather boring. There’s a reason The Scientist jokingly calls me “Data” at times. But Data saved the Enterprise as often as Picard, right? I like my boring superpowers. They’re useful. They’ve served me well.
Asperger’s or Personality?
The line between my aspie traits and my other more typical personality traits can be a fuzzy one. In the absence of Asperger’s would I still have the strengths that I do? Doubtful. I’d be a different person. Look at my list of strengths. Do you see compassionate, caring, or intuitive on it? How about spontaneous, sympathetic or a team player? I am all of things in varying degrees, but they aren’t my strong points.
My strengths are typically Aspergarian. Without Asperger’s I might be a less extreme form of myself–a blend of my current traits with neurotypical traits. I fear that I’d lose most of my superpowers, though I might gain other superpowers in place of them.
Do NTs have superpowers? Surely they must. I think The Scientist has social superpowers. He’s remarkably charming, persuasive, likeable, confident and intuitive. It’s as hard for me to imagine what he would be like with an aspie brain as it is for me to imagine myself as an NT.
Not that I ever really do. I like being an aspie. Sure it’s a pain in the ass sometimes, but take away Asperger’s and I’m no longer me.
I like me! Have I said that? Are you tired of hearing it yet? Because this is important. I’m autistic and I like myself. There are people who would find that hard or even impossible to believe.
I like being a little different. I like my aspie strengths and superpowers far more than I dislike my aspie weaknesses. Let’s face it, everyone has weaknesses. Everyone faces challenges. The perfect person, the perfect life–that doesn’t exist.
What Are Your Strengths and Superpowers?
The idea of a distinct set of aspie strengths has its roots in Tony Attwood and Carol Gray’s “The Discovery of Aspie Criteria.” They proposed seeing Asperger’s as a set of strengths and talents rather than a syndrome of deficits. If you’ve never seen the list, you can find it in that article–scroll down a few screens until you see the numbered lists. If you haven’t yet identified your aspie strengths and superpowers, it’s a great place to start.
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.
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
Sewing (making my own clothes)
The stock market
M*A*S*H (TV show)
Human detritus (abandoned places, found objects, discarded things, cemeteries)
Astronomy, especially Messier objects
The Choson Dynasty
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.
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.
Aspies have a reputation as encyclopedias of useless information. We’re the geeks, the braniacs, the little professors. I’ve done more than my share to keep this stereotype alive. I’m a treasure trove of seemingly useless facts and I have superhuman memory for random bits of information.
I know that tigers are solitary animals while lions prefer to live in groups. The last half dollar to be made of mostly silver was the 1964 Kennedy half dollar. The normal human body temperature is not actually 98.6 degrees. The minivan was invented to take advantage of a loophole in CAFE standards.
Why do I accumulate and catalog so much random information?
I think aspies are innately curious by nature. I know that I am. But I think a bigger factor, at least for me, is the tendency to see the world in patterns.
I can’t help noticing patterns and, when a pattern is broken, I need to know why. For example, have you ever noticed that the tops of school buses are painted white? I have.
A few months ago I moved from a rural place where I rarely saw a school bus to a busy metropolitan area. Suddenly there were school buses everywhere and, unlike the school buses of my youth which were uniformly yellow, the school buses here are painted white on top.
Most people will see this and go “huh” and carry on with their day.
But I see the white top on a bus and need to know why it’s there. It’s not arbitrary, right? Someone, somewhere, at some point decided that painting the tops of school buses white is better than painting them yellow. A policy was created, money was budgeted.
At least that’s what I find myself hoping when my daughter finally decides to Google “white tops of school buses” so I’ll finally shut up about it.
That’s how I came to know that painting the tops of school buses white makes the buses cooler (by reflecting sunlight) and safer (by making them easier to see). Also the flashing white light on top makes school buses visible from a greater distance in fog or rain.
In case you were wondering.
The thing about this kind of useless knowledge is that it doesn’t feel useless to me. I like thinking about the simple elegant solution that a change in paint color presents and I like knowing why a familiar pattern has been broken.
Now if only I knew why bacon in a box doesn’t have to be refrigerated . . .