a parliament of owls

life with asperger's

Month: August, 2013

Asperger’s: Discriminating Difference

What does discrimination look like? What does it feel like? Each experience of discrimination (racism, sexism, agism) has its own inflections, based on the ways in which the perpetuating culture provides a basis for supposedly validated judgments against particular groups. So when we talk about what Asperger’s discrimination looks and feels like, we’ve got to explain it as a particular form, from the inside.

One dimension of what Asperger’s discrimination feels like is a rejection of or reaction against introverts. Recently, a quiet social movement has begun to express the positive bias in our culture toward extroverts, and a corresponding negative bias against introverts. Susan Cain‘s book Quiet: The Power of Introverts in a World that Can’t Stop Talking (2012) both crystallized the movement and catalyzed it to go further. Educational method, for example, has come to place a premium on collaboration (what Cain has elsewhere, in a NYT column, called “the rise of the new groupthink“). This pedagogical bias toward extroversion has become identified with participatory and authentic learning: students creating knowledge with other students as they work together to identify and solve topics or problems in common. Students who are adept in collaborative settings are sometimes assumed to be more advanced or mature than those who aren’t. Conversely, those who prefer to work on their own are sometimes labeled as deficient; they must be encouraged to change, even assigned to change, through social process requirements around their learning work.

Vanessa Quirk’s “In Defense of Introverts” is inspired by Cain’s work, and reflects well on how this matters to educational design, even the physical design of contemporary classroom spaces.

“The paradigm of the extrovert has become so accepted, that most people aren’t aware of its reach – or how our architecture has developed to meet its demands. Consider how the classroom – or the workplace – has changed in response. From students working autonomously in rows or employees in cubicles, there has been a huge push to create group-oriented spaces meant for collaboration, interaction, and conversation. As Sarah Conin notes in her TED Talk, ‘Our most important institutions, our schools and our workplaces, they are designed mostly for extroverts and for extroverts’ need for lots of stimulation.'”

Are all people with Asperger’s introverts? Maybe. Probably. By definition, we lead intense inward lives, obsessing about our interests, processing, processing, processing before emitting a response, often scripted. Our imaginations are extremely active and, well, compelling, and the world outside can provide sensory and social overload or, equally unsatisfying, limited cognitive stimulation. On the other hand, we’re often highly sociable and can enjoy the company of others, especially kindred spirits. We are not necessarily withdrawn from the world by predisposition, not as people might assume, given the verbal deficit and social withdrawal that are more commonly associated with Classic Autism.

But I don’t think I’m going out too far on the limb of generalization to say that it’s unlikely someone with Asperger’s will want to work in teams all the time for solving problems. We can work in teams, and we can even enjoy it in collaborative bursts, but we want our own areas of knowledge / expertise and responsibility. We want to be able to go back to our corners to reflect and puzzle. We don’t want our process of building inward systems disrupted, unless the person with whom we’re working can contribute actively and effectively to the modeling. We don’t want to get sidetracked or engage in small talk. The work is the thing, not the experience of working with other people on it. We don’t want anyone slowing us down or pulling in a different direction. Many of us are attracted to industries where these predispositions are embraced: academia, engineering, IT, writing and the arts.

There’s research evidence, much of it recent, that suggests that innovation is often the result of individual rather than group effort, and that group effort alone, when it does contribute, is not enough. Brainstorming is not the most effective method for advancing into new territory. Even open-plan offices, the kinds where people sit together with the old Dilbert cubicle walls taken down, have come under critical fire; according to Cain, 70% of American workers inhabit these. Open-plan offices are supposed to provide environments that foster collaboration. You’ve only got to lean over, roll your chair, or stand and deliver. But they’re noisy and distracting environments, too, and ones that don’t allow knowledge workers a place where they can take a thoughtful break doodling or sit with their eyes closed unobserved. They can lead to hits in productivity. For an introvert, they’re stressful, bottom line. But in American knowledge work culture, the private office is most often seen as a gift of privilege, to possess one is to possess status. To request to move to a private office can be perceived as overstepping. The desire to work alone or on one’s own is often equated with not being a team player or attempting o make one’s own decisions or cut others out of the loop. There is something subversive or suspect about the introverted worker who asserts a need for private, for quiet, for a room of one’s own.

The introverted worker, as many writers have now pointed out, sometimes encounters the bias American culture has against shy people in professional settings (to witness this bias in action, just Google how many career advice sites provide help for the shy in particular). To be shy, or reticent to express oneself in company, is often associated with being professionally passive, unable or unwilling to assert expertise or to gain necessary resources or to fail at persuading others of the value of one’s work or ideas. For men, shyness can be undesirably feminizing. For women, it can be socially rewarded, but ultimately subordinating. The shy of either gender are not management material; they do not, can not, rise to the top, whatever their brilliance, work ethic, or record of contribution. Fortunately for introverts, not all of us are shy, and fortunately for those of us with Asperger’s, our social deficits don’t render all of us shy, either. In fact, we might be perceived as too assertive or too insistent on engagement, carrying an argument until we believe we’ve proven our point or talking about a subject of interest long past its interest to others. We can often give a great, if scripted, presentation about our interests.

Although–it’s also true that some of us don’t make eye contact much if at all, and many of us drop speech or have delayed response to others. It can take us time to process before we respond, and other people can lack patience for that — or just feel it’s incredibly awkward. We can avoid social contact when it’s uncomfortable. All through my tween years, I made my friend buy things for me when we went to the store. I couldn’t stand to face the cashier. I still avoid store clerks. If they head toward me, I have to fight the urge to run. The more uncomfortable the situation, the more these behaviors manifest. Worst yet, if we claim we are introverts, we are often assumed to be shy, and so encounter the bias against shyness.

In addition to encountering biases against introversion and shyness, people with Asperger’s encounter a widespread cultural bias against nerds/geeks. U.S. culture, perhaps Western civ in general, has come a long way in accepting nerds/geeks since The Revenge of the Nerds (1984), which was perhaps just the beginning, along with Weird Science (1985), of celebrating the brainy, odd other. Nerd/geek girls are still fighting more of that good fight than boys. With the rise of computing and digital consumerism, particularly media, being nerdy or geeky has achieved its own kind of cool (we earn, we make things others like, we celebrate our difference and our sameness together — thank the Gods for the world wide web). Good looking people now regularly participate in cosplay. This is not how it was when I was growing up. When I was growing up, playing Advanced Dungeons and Dragons was for social oddballs, usually culled from the AP or gifted classes. We wore glasses. We didn’t get a lot of action. We expected to be successful academically, but not socially.

Even today, however, my son talks about the popular kids who inhabit jock culture. He’s resentful of their popularity and uncomfortable around their loud physicality. Every now and then, some hybrid soul rides the fence between worlds, but it’s not common and the world of conformist school society usually forces a choice. There’s not the kind of happy blended ending for these kids that one finds in teen series and romantic comedy. Who would choose to be a geek or nerd rather than one of the in-crowd?

I know a man who is a geek on the inside (he wanted to be an oceanographer), but was cursed with being too good looking. He married a cheerleader. They have two gorgeous kids and live in a beautifully decorated home. He works as a civil engineer and she teaches subjects at school that don’t require much intellect. He and I used to talk across the lawn outside while doing yard work. He’s tied himself for life to a vapid lifestyle (her favorite hobby is scrap booking) and a woman who can’t fulfill him mentally, but fortunately there’s more to marriage or I think he would have driven into a lake by now.

It’s just as well. Deep within nerd/geek culture is a tendency to discriminate against others who are athletic, popular, socially facile, and/or good looking. We don’t trust people like that, even though some estimates place them at 75% of the population. And maybe, in Aspie culture, the same thing can be said about Aspie reactions to neurotypicals, even though there’s more of them than us, or around 99% of the population (or more– some say we’re 1 in 500, not 1 in 100 or 1 in 88, which you’ll also see). Like all in-groups, we have defined our out-groups and we have biases against them. It’s not the better part of human nature, but it’s human and it’s natural enough.

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Party Lines: Aspies at Work

I’m having trouble at work. Not with coworkers, or the work itself, but with helping the administrative staff above me in the hierarchy understand that I mean to be respectful, only I’m prone to questioning things, to investigating them from the bottom up, and sticking to a version of the truth based on fact and reason rather than institutional policy. I mean to be respectful, but I’m constitutionally incapable of following the party line and, to be honest, more than half the time figuring out what that is. It’s not that the party line is necessarily misguided. It’s a shared story dictated by an organization’s leaders that everyone is supposed to adopt. It governs not only our organizational narrative, but also our semiotics, our communications, our most intimate relations in the lunch room. It governs short term project goals and long term organizational objectives. But what is the story we’re supposed to share exactly?

The trouble with party lines is, there’s the one we are told and the one that is really meant. Figuring out the indirectly expressed story of ourselves at work is difficult for someone with Asperger’s. It’s akin to when I first began reading scholarly argument in the humanities in graduate school. It took me a long time to learn to suss out the theoretical position of an author and the aspects of the ongoing scholarly or cultural conversation that the author was addressing in those terms. A novice might express a theoretical position in direct terms (e.g., “As a feminist, I…”), but the more sophisticated the writer and thinker becomes, the less such direct declaration becomes necessary, or even desirable. I’ve trained myself to analyze the indirect in writing, but in live social dynamics, I am much less adept.

One of the most commonly unexpressed organizational narratives I come across in employment these days, in both academic and business contexts, is that I am joining a flat organization, or one very close to flat (a matrix). Or if not flat–which is fine because flat has its problems with crossed boundaries and unclear lines of responsibility–then open to individual contribution, really open. Everyone is valued, no matter their rank or role. We are focused on excellence. Innovation is welcomed. This is a good story, and I buy it every time like the proverbial farm boy convinced to swap a decent milk cow for a bag of magic beans. Maybe the people telling the story are so convincing because they want to believe it, that they are capable of this level of confidence when, at the same time, they will be judged by those above them on what their employees do. After all, the peasant heaven at the top of Jack’s beanstalk had a goose that laid a golden egg and a singing harp — agents of distributed productivity. But it also had a giant who feasted on human flesh–and somehow the giant at the top of the food chain always comes across as the more immediate and compelling motivator.

It’s not that people with Asperger’s are fools. We’re aware that people don’t always say what they mean or mean what they say. But we want to belong to organizations because they are social mechanisms that make work and make it matter, and we want to believe we can interface with them successfully. To do that, we need a professional environment that enables challenge to received notions, that privileges reason over emotion, that is more about merit and method than about social relationships and who has the boss’s ear.

Above all, we need a structure above us that accepts suggestions for improvement, genuinely, rather than just leaving the box out to gather yellowing cards and dust. We need supervisors who don’t believe that these kinds of probings, questionings, and re-envisionings are a challenge to authority, but an opportunity for those with the power to decide to re-consider, even if they choose against change in ways large and small. Some of us can accept it when our suggestions aren’t acted upon, however well reasoned and researched. For an Aspie, that’s a sign of real emotional maturity, and I hope I’ve achieved it. But we need someone who gets both the depth of our expertise and the narrowness of our interests, and the unrelenting drive that compels them.

We might need someone, too, who can retrain us to work with their particular style, someone who is generous and humane, who treats their staff as eager contributors to a mutual project rather than as functions with duties to perform. That is a lot to ask of a hypothetical someone who really only set out to hire a function to perform particular duties, to get x done the way that have already planned for x to get done. Voluntarily, eyes wide open, who would go in for a perpetual critic? For someone who is unwilling to accept things on face value? Who sits at a meeting designated for hiring an elephant and asks whether it wouldn’t be better to hire a kangaroo if we really want someone who can jump?

Supervisors like this can and do exist. I’ve just come from one. If the soft money funding my position hadn’t run out, I’d be working for him still. He’s real, so real that occasionally we still do lunch.

At a less prepared workplace, by the time the party line is apparent, the real party line and not its publicly palatable version, an Aspie can be in trouble. An Aspie can seem not have to have been respectful, a team player, courteous, deferential, savvy, a networker, in on the joke. It’s at this point that, if workplace advice to Aspies can be believed, many of us disclose our condition at work for the first time. By then, the advice books and blogs say, it may be too late.

It might surprise people, but Asperger’s can qualify as an ADA protected disability, provided that the employee is qualified for the job. That’s because Asperger’s “substantially limits” one or more major life activities–not the ability see or hear but the ability to see a social landscape and understand the language spoken in it. Autism Spectrum Disorders were first perceived as covered under ADA following the Amendments Act of 2008, which expanded the definition of major life activities to include things like communicating,  thinking, and working. An estimated 75-85% of people with Asperger’s are unemployed, despite many of them wanting to work. There’s a Job Accommodation Network guide, sponsored by the Department of Labor, that provides employers with typical accommodations that can help their Asperger’s employees to succeed on the job. There’s case law, and there’s Federal policy behind Asperger’s as an ADA disability. But because Asperger’s is a hidden disability, and because many employers are reluctant to offer accommodations to employees unless forced, an official diagnosis is usually required in order to receive them.

An accommodation, to be clear, doesn’t excuse an employee from performing the duties they were hired to do. The accommodated employee still has to meet his or her responsibilities and meet the same expectations for performance as anyone else would in that role. The accommodation only eliminates conditions that disable the employee from succeeding, and the kinds of accommodations that help employees with Asperger’s are usually low cost and low effort for an organization. The benefit of having a focused and dedicated employee, often highly knowledgeable with specialized skills, could seem worth it.

But many adult Aspies don’t have an official diagnosis. For our generations, it was missed in school, at a time when people were less aware of the nuances of neurodevelopmental differences. Adults with ADHD are often in the same boat (although ADHD was an earlier diagnosis to gain attention). By the time we realized we were different, often in the process of getting our own children diagnosed, most of us had sailed along for so long without supports or accommodations, we didn’t pursue a diagnosis, which is time consuming, expensive, and can have repercussions on insurance and future employment.

To receive accommodations at work (I have requested receiving work requests in writing with direct deadlines and project requirements and a mentor on the job who can communicate any indirect social rules and stories to me, as well as point out missteps and miscues), I am in the process of seeking a medical diagnosis. I initiated this in early August, but the diagnostic results won’t be available until February. It’s a painful Catch-22 to be in, this wanting to prove I am respectful, only I sometimes don’t come across that way, even when I try my best. My supervisor has written to say that even though I say I have Asperger’s, I really only “believe it.”

I find myself wondering why previous supervisors have accepted me as I am, without the explanation of a disability–I’ve been successful and perceived as contributing; I’ve been valued even if and when challenging. I wonder what I would do in her position, if I would accommodate my employee anyway, given the low effort and lack of cost involved in the particular accommodations I have requested. Would that employee’s expertise be worth it to me? Would their well being matter? What would I lose if the employee’s belief was false, if she didn’t have Asperger’s at all but was mistaken or making it up?

I find myself wondering if there is a larger organizational narrative, at some corporate level much higher up, that gives the reasons why every employee must be treated the same, like twins forced to dress in matching outfits or hospital patients forced to eat the one lunch plate regardless of preference. I don’t know. Most of the organizations I encounter, including mine, say they place a high value on employee relations and on supporting their employees so that they can succeed in making a contribution. But, then again, I can’t help but question.

The Asperger’s Closet: On Coming Out

My brother chose the night of my high school graduation to come out to our father, who had raised us after the divorce. I was the younger child, and the black sheep to my brother’s shining sun; the day had finally been about me. After the speeches (I’d given one), and the interminable procession, we’d be allowed to go out for Mexican, which counted as exotic fare in our small town as late as the summer of ’84, something my father usually wouldn’t tolerate (the food along with the people). We’d come home and were having one of our long “family talks” around the dining room table, the kind where my father ranted for hours, full of black Irish emotion and passionate philosophy, weaving the story of his life with ours, or his version of it.

We can tell each other anything, he said. We share our truths. I wasn’t sharing mine, not any of them. I was sitting quietly listening, enmeshed in the family dynamic that was built more on myth than fact. Into this fiction my brother intruded his truth, that he is gay, that he had always been gay, that he had been experimenting while away that year at college. He was ready to own it. I had known since we hit puberty, and I was glad, relieved, that he had decided to come out. Coming out is never easy. But his timing was terrible. My night of celebration turned into a trauma.

My father’s agony was real. One of his two adult best friends, my Uncle Dick, was a gay man who had been murdered in a hate crime years before–well, pulled from his car after his windshield had been hit with a brick and assaulted until he fell into a coma; he later died of his injuries. They had never spoken of Uncle Dick’s same-sex attraction, and, my father said, that had made their friendship possible. With this unwelcome truth out now between my father and his son, something unspeakable had been said. Something that wasn’t shared even between men like brothers, certainly not between father and son. It doomed his son to death. It put an insurmountable barrier between them. On every level, it literally and without exaggeration terrified him.

Therefore, on the night of my high school graduation, my father somehow found the God he had rejected so that he could punish my brother with Him. In the years that came after, they continued to struggle. My brother argued that my father should accept him completely, and my father argued that he never would. He could love my brother, but not that part of him. He knew my brother, but could never know all of him. At their closest moment during those after years, my father even helped to move my brother and his lover (an Army nurse) into their new place out of state. But there was always something gone wrong at bottom, and the uneasy truce wasn’t bound to last. During that move, they got into a terrible fight over something incidental, like who was unpacking slower or driving too fast to follow. Conclusion was, my father raced home afraid my brother was going to use the spare key to our childhood home to get into the house to kill him. He changed the locks. They haven’t spoken again. Not as far as I know; I’m not speaking to either of them.

My coming out has been different and much less traumatic than my brother’s, but it, too, carries a gift and a price. I’m not talking about coming out with an alternative sexuality, but with an alternative identity just the same: disclosing to people that I have Asperger’s, or high functioning autism, or asd.

If I were a gay man, people would be inclined to believe me when I told them so. With Asperger’s, a common reaction is skepticism. The person I’m telling has a relative or a friend of theirs has a relative who is a classic autistic. I don’t fit that stereotype. I’m verbal and don’t sit on the floor rocking (although if I stand long enough a rotate, or swing my torso, from side to side–something we call stimming). Or, they think of the socially incapable uber-nerd who is male, but here I am, a woman. I seem to have social graces (seeming is believing). I can make eye contact (admittedly, too much). I can make small talk (not often or for long). Or, they just flat out believe that Aspies are unicorns, invented out of some bizarre inclination toward wish fulfillment, maybe a desire to be special, to find a label for introversion or eccentricity that has a certain clinical ring to it, as if by making such a claim virgins will want to ride us and the forest of twilit dreams will be ours and ours alone to roam.

Sometimes, when people do believe, even then they might express that it’s not a big deal. They’ve got friends who are geeky-nerdy- introverted-techy-socially awkward-brainy people–maybe even on the shy side. I’m not shy, I tell them. I’m not reticent. I’m what they call “active but odd.” Hang around me long enough, or do away with one of the many interactive scripts I’ve learned to run, and prepare to be — well, it depends on your tastes and maybe my mood. Charmed. Stumped. Annoyed. Amused. Uncomfortable. There’s a range of reaction depending on our chemistry. And it’s not that I enjoy rejection or that I’m impervious to it, but I care much less about it than a socially normative person might. I’ve got rigidities. Obsessions and collections (a hoard in the skull). Sensitivities to stimuli. Imagine a cat with its back up, making that Halloween cat face of alarm. I’ve got one of those inside my nervous system, ready to jerk upright just behind my face at any given moment. It happened today in a meeting, when someone dropped something with a crash. I jump and grimace. Twitching. I have to concentrate to resettle. Literally, the surface of my skin stings all over, arms, legs, chest.

I’m different, and finally someone sees. One day, not long ago, a woman at my new job was teasing me. She’d found me sitting alone in a meeting room, waiting for the thing to begin. I always try to be on time, or a little before, and I do it even in a place where people have a culture of running a little late. They’ve told me they run late there. But it doesn’t matter to me. I have developed an internal standard that punctuality is polite, and therefore I do it regardless of others’ social expectations. So she is teasing me, saying that I must be so lonely, so very lonely, sitting there all alone in my aloneness. Party of one. Loner. I’m reminded of that scene in the Steven Martin movie (The Lonely Guy) where he sits down in a restaurant to eat alone, feels self-conscious, and the universe fantastically manifests his self-consciousness as a spotlight shining down only on him. But I am not lonely. I don’t care that I am the only one in the room. I have plenty to think about, and I often bring something to read, anyway, just in case I run out of interesting thoughts. I tell her, to stop her from interrupting my thoughts and for Gods’ sake emoting at me in that too loud, cheerful-neighbor-over-the-fence voice, that I am not at all lonely, and that I don’t get lonely, not in the way she means. I don’t generally long for other people. I only ever miss particular other people, and then sometimes, not always. There was something in the way I asserted this that made her pause. She understood, I could tell, that there was something new in the room with her, something she wasn’t used to encountering in the daily course of her life.

Glimpses like that into another person’s awareness of my difference are validating. Not because I want to be different, but because I am different from most people. I can’t help but be keenly aware of this in my every interaction with strangers or people of limited acquaintance. It doesn’t make me an object of pity to myself. I am not a victim. I am not necessarily Aspie proud, either. It is what I am; it’s not something I’ve achieved. The moment when I move from self-awareness to advocacy is the moment when I sense someone has recognized my difference and rejected it. That someone might not realize he or she is rejecting Asperger’s. It’s akin to a conventional heterosexual finding an effeminate man or masculine woman distasteful. I seem like something they recognize, except there’s something else about me that’s too remote, or blunt, or analytical, or serious, or intense. I’m staring at nothing with an unfocused gaze, or my interest in manifesting fake cheer has dwindled (all too easily and often). Then that someone recognizes a distasteful difference, without getting all the way to giving it a label. And if I gave that kind of person a label to explain it, would that render me more palatable to them? Or would they believe instead that there is some kind of medication that could help me to conform or therapy that could fix me?

It wasn’t that long ago that a woman to whom I’d revealed my Asperger’s made that very suggestion, that there must be some kind of therapy. Yes, Aspies sometimes benefit from social skills training or motor skills development or cognitive behavioral therapy for anxiety. Some of us take medication to help with anxiety or depression. But the fact is, we’re born this way–whether others believe us, accept us, or reject us. Baby, as Lady Gaga would say, we’re born this way. We’re freaks and geeks.

Just as with my brother’s experience in coming out, however, the most important reaction to difference is one’s own. It has taken me years to understand myself as someone with Asperger’s, to accept that Asperger’s is a form of autism, and even to acknowledge that this may put me at a disadvantage in certain contexts, despite my intelligence, ability, and confidence. And lately, I’ve been coming to a different place still.

These days, my Asperger’s is seeming less like private information, something I can only confess about my son in order to help him gain support services at school. We have a lot of positive talk in our home about what it means to be Aspie; we’ve come to admire the gifts, laugh at the quirks, and shrug at the deficits. So maybe there is some real value in coming out–not as much to the neurotypical world in the hope that we’ll eventually gain understanding and acceptance, although that’s something to shoot for, but so that we can embrace one another and come to a greater understanding and acceptance of ourselves.

This, then, becomes the foundation on which we stand to face the world.

Asperger’s: The “Invisible” Disability

I can almost always tell when people think I’m a little off, or a lot off for that matter. They get a look like they’ve expected to swallow fresh milk but it’s turned sour in their mouths instead. Sometimes someone who’s overheard the exchange will make an excuse for me, or attempt to cover over whatever it is I’ve said. The verb “smoothing” comes to mind, like I’ve just disarranged the couch cover in front of honored guests. That’s when I feel most visible.

Often, no one in this awkward social moment is aware–except me–that I have Asperger’s Syndrome. I am most at risk of being inadvertently exposed as lacking socially when I am concentrating on a topic of interest. Then, all of my cognitive energy is coursing into thinking about that subject, and none of it is left for expressing my thoughts about it in a socially careful way. It does not occur to me that I will express my opinions too forcefully or too bluntly. It does not occur to me that for others in the conversation this is a social dance with as many ritual mating gestures and noises as island birds’–instead of what I experience: a direct conduit between logically engaged brains all focused on the pursuit of accuracy, truth, solution.

It is not that I don’t care about the feelings of the other people with which I’m talking. I do care. I’m a person who values kindness over nearly anything: intelligence, correctness, ego. As soon as I’ve understood that I’ve disturbed or upset someone, I am alarmed, embarrassed, unsure. To be honest, sometimes I’m also frustrated, especially with people who are overly sensitive about their pride being hurt. Those people tend to fall into one of two groups: people who are used to others deferring to them because of their status and people who are used to thinking of themselves as the smartest and most informed person in the room.

It’s a commonplace that people with Asperger’s don’t defer, and in the workplace, that can give us difficulties with supervisors. A lack of deference, however, is not necessarily a lack of respect. People with Asperger’s tend to want structure and be oriented to follow rules; it’s hardwired into us. Our love of patterns is an expression of our love of order. This translates to the workplace as an inherent respect for a supervisor. A supervisor is a giver of rules. A supervisor serves as an important organizing node in the workplace’s structure. Now comes the “but.” A supervisor also needs to be corrected if he or she is mistaken, because a misinformed supervisor disrupts order even more than mistaken co-workers or subordinates. A mistaken supervisor can set bad project parameters, for example, or put into place processes that don’t work as effectively and elegantly as possible. And here’s the thing.

People on the spectrum tend not to be loyal to people. We are loyal to our organization, and even more importantly, to its mission. We are idealists by nature. We are all about work, and when we devote all of ourselves to work, it has to matter. It has to mean something. It has to get a real result. Anything that gets in the way of that needs to be corrected, even at a cost to ourselves.

Bear with me through this apparently unrelated for instance.

When my son was a toddler, he did not care for action figures. He would not play with anything that had a face. These toys simply did not interest him. This concerned me, because I would watch other children his age, say, another little boy, excited about holding a superhero and zooming around with it as if he were the one flying. “Normal,” socially-oriented little boys might gather their superheros together to fight a bad guy, talking all the while about who had the better superpower. My son identified with machines and operations instead. He was a bulldozer, or even the brains behind the operations of a busy train station. He was focused on what these toys did, and how they did it, rather than on any personality with which they might be imbued or how they related to one another as individuals with inner lives.

Now, fast forward a couple of decades or more. Take this same child and plunk him down in a workplace. When working, he is not primarily interested in the people with whom he works as personalities, as individuals. He will relate to them as mechanisms within an operation. He will focus on what they can accomplish together toward a specific work product and the objectives that inform that product. What would he say, if he could, to the timetable in train station if it malfunctioned, sending the trains onto the wrong tracks at the wrong time? He would provide it with a correction. He would ensure that order was restored and organizational goals were met.

And this provides me with a good metaphor: track switching. Those of us with Asperger’s are capable of track switching, just like trains. I can be running on a mental track that is all about the best and correct way of accomplishing a goal at work, devoting all of my energy to it. And then, I can switch tracks to a social course, in which I am thinking about how other people around me are feeling and what they may be thinking about what is going on between us. These tracks do not run in tandem for me; they are separate, distinct mental tracks. What’s more, although the social track matters, because of my intense interest in certain subjects, like the subject of my work, when I am running on the work track, it matters much more to me. It is not easy for me to leave it. And if I am forced off that track abruptly, by someone getting angry, for instance, I am utterly derailed for a time.

Over the years, I have learned that it is sometimes desirable, before moving to the work track, to run for a bit on the social track: to make small talk (which usually bores me), to set up an assurance that I intend to be collaborative, to offer that there are many solutions and that the one I’ll present is just one. Unfortunately, that doesn’t solve the whole problem of interacting with others well in the workplace, or of being made suddenly visible as someone with ASD when I would prefer to be as invisible as Liu Bolin. Although Asperger’s is often called a “hidden” or “invisible” disability, that label can be misleading. Given the social deficit which is the essence of my Asperger’s, I know that however much I try, eventually I will say something too bluntly or go on at too much length. I will question when I should agree, I will state an opinion when I should have none. With Asperger’s, it is impossible to truly remain invisible.

Claiming Asperger’s

Many people are wondering aloud these days about why they are hearing so much about autism in general and Asperger’s in particular. It’s legitimate to question why, and whether it’s always been around and in such prevalence. In March of this year, a new U.S. government report claimed that 1 in 50 school children are on the spectrum, higher yet than the 1 in 88 reported in a different report the year before. The March report was based on 100,000 parent surveys, which may be more suggestive of increased diagnoses and request for services than an increase in actual numbers of cases. Even so, the relatively large number of diagnoses raises the concern that autism spectrum disorders are a fad. Within the high-functioning autism community, one effect of this concern is that officially diagnosed autistics or those who love them go after those who are self-identified.

I am a self-identified high-functioning autistic. I do not yet have an official medical diagnosis, although my son has been officially diagnosed. As I describe in an earlier post, I first came to realize I share his diagnosis during the process of developing it in cooperation with staff at a local university psychological services center. I’ve tested this against the Baron-Cohen Autism Spectrum Quotient, which is a diagnostic inventory developed at the Autism Research Centre at the University of Cambridge; it’s so popularized now, it’s even appeared in Wired. Any score of 32 or higher is suggestive of ASD. I consistently score over that. My last evaluation two days ago placed me at 36. I’m now in the process of seeking a medical diagnosis, which I have put off because I had not needed it previously, being well adapted to work and life in general. Besides, achieving a diagnosis for a developmental condition like Asperger’s is no quick feat. It means an initial hour consultation followed by four two-hour testing sessions, as well as completing a long self-assessment questionnaire. And it’s not free; I’m fortunate to have the means to do it through employer-provided health insurance.

It can also be difficult to find a clinician who has expertise in and the availability to do adult Asperger’s assessments. Most clinicians are geared to assess children, which is understandable given that it is a developmental issue that can impact academic success and psychosocial progress. Those of us who seek adult diagnoses now were raised in generations when there was less clinical and social awareness of high-functioning autism, and certainly even that much less awareness again that females might be so diagnosed. Males are still much more frequently diagnosed (at a ratio of 4:1 with autism in general and 9:1 with Asperger’s), perhaps in large part because the main diagnostic criteria for Asperger’s was originally based on cases of boys alone.

Temple Grandin, now a famous instance of a woman with Asperger’s, as well as Judy Endow, an advocate on the spectrum, have both made progress in dispelling the myth that high-functioning autism is a boys’ club. Good work has also been done in recent years on the differences between male and female high-functioning autistics, especially by Tony Atwood. It’s in reading Atwood’s work on girls and women with Asperger’s that I had once again that shock of self-recognition I had experienced during my son’s diagnostic process. Once again I realized that so many of the characteristics I had thought were unique to myself were shared by others on the spectrum, this time female others.

Here’s one striking example: Much has been made of boy’s Asperger’s culture revolving around obsessions with trains, legos, and video games. My own son, now 12, continues to be absorbed in video games and, when he was younger, shared an equal absorption in trains and legos. People outside of the high-functioning autistic community might be quick to say that all boys tend to like these things, but the distinction is in the degree. Boys on the spectrum often show an interest in trains, legos, and video games to the exclusion of any other forms of play (except perhaps other mechanical or construction sets), any other kinds of interests (except a limited number of other obsessions, such as construction machines or insects or extreme weather phenomena), or any other topics of discussion. Girls on the spectrum, according to Atwood, often project themselves into reading, instead, and especially reading in the genre of fantasy. He reasons that girls on the spectrum find power in fantasy, identifying with characters who overcome through their special abilities, as well as finding in fantasy worlds a safe haven from social anxiety. By the time I had finished middle school, I had read Tolkien’s Middle Earth works, including the Silmarillion, seventeen times. I had read his letters and many books on his work, the myths on which they were based, and a biography. I had even kept an encrypted journal in Elvish script. And then, years later, there was a doctorate in British literature with a specialization in fairy tale and fantasy literature. In one of his books, Atwood even names literature professor as a common and effective career choice for women with Asperger’s. My hands shook when I held that book, reading what I had always taken to be the happenstance story of myself told with unlikely accuracy.

I can understand the desire of those already diagnosed with high-functioning autism to want to protect the value of the diagnosis from seeming to apply to everyone who has social anxiety or introversion or a certain nerdy or geeky turn. There seems to be some confusion about how these other qualities differ from this specific developmental condition, which can itself present in subtly nuanced ways across personalities. But I also think it’s okay for people to wonder if this diagnosis applies to them, to be Asperger’s curious or questioning, to use an analogy to LGBT culture. And I think that for many and maybe even most people, the journey to accepting a diagnosis is not an easy one, not when the diagnosis is understood as a potential set of costs as well as benefits. Eccentricity may be charming in short bursts, and adopting an eccentric pose may be fun in certain circumstances, but to be an eccentric by neurological fiat when one desires to be accepted, liked, and even unremarked and remarkable is an uncomfortable thing. There may be those of us on the spectrum who ultimately wear the diagnosis as if it were a badge of honor, who might take it as a point of pride to be different and therefore special, but this is itself an act of bravery and perhaps of defiance from those who have no choice but to live on the social fringe.

Co-Morbidities

The first and last time I attempted suicide, I was six years old. I was living in what our modern media culture would call a “stable, two-parent home” in the suburban American Midwest with an older brother near in age who was my daily playmate. We had nice enough things and plenty to eat. My father was a banker. My mother was a housewife studying to be a nurse. Our backyard was pretty with lilies of the valley and an evergreen hedge, and we lived within walk of our elementary school and the sound of ice cream trucks. But somehow, I wanted to die. You can see it in my face in pictures taken around the time. I am an exceptionally slender, large-headed girl with enormous eyes in a pale oval face. The eyes are sad. The expression is as melancholy as a post-Crucifixion Madonna’s.

The idea of suicide must have occurred to me after my mother’s only sibling, my beautiful aunt Linda, took her own life. My middle name is a shortened form of hers, and knowing that I felt irrationally connected to her, before, after, since. Maybe I loved her because she was that kind of pale German beauty who has a soft voice and a pretty laugh. She had a big, shaggy sheepdog, Bitte, that kissed everyone, and she gave me the only stuffed animal I have kept into my 40s, a hairless polar bear with the worn-out music box removed from its back. Of all the adults I knew, she was the kindest. Or so I thought then–maybe because she lived in another state, and I rarely saw her. Maybe because she was good at talking to children, keeping adult things at bay, no matter how owl-eyed the girl. When the fantasy of her ended, the world was just that much less hopeful. After she died, I did not expect I would be understood, or loved. Not then. Not again.

I was the difficult child to my brother’s obedience and charm. I didn’t say the right things, the polite things, and if something went against my ideas, I would not cooperate. Like the time in pre-school my nice lady teachers wanted me to cut and paste a collage of cars from magazines. I didn’t like cars, and I wouldn’t go along. I’d sat for over an hour refusing to craft, guilty of refusing to craft, when my mother was ushered in and forced to ask me why I wouldn’t do what the other children were doing. No. I refused to take on the nickname of Sissy, younger sister to my older brother, because I was no sissy–and I told that with blunt determination to the doctor in front of whom my father had dared to call me that hated word.

I didn’t want to be a girl, wearing the homemade dresses my mother made out of denim and gingham, decorated with strawberries and sewing notion borders. I couldn’t keep my tights from bagging around my knees. My thumbs stuck out when my mother put on my shirts. They always caught. I wouldn’t keep my clothes clean when I played. There were too many interesting things about worms, and things to be made with dirt, like poisoned burglar pies. My thin hair wouldn’t hold a braid, a band, or a barrette. Sometimes my mother would get so frustrated by my inability to just be the girl she imagined I could be, I should be, she would hit me with a hairbrush or jerk me around while my stuck thumbs twisted until they seemed about to break. But I had a high tolerance for physical pain, and my ability to feel my feelings was at a similar remove. I wanted to wear my hair short and dress like a boy. I wanted to be as free as a boy, and as loved.

I can remember when the idea of attempting suicide occurred to me: not the why, but the how. I had been running while chewing gum and choked on it. I was still light enough then that without a second thought my mother bent, picked me up by my ankles, and shook me upside down until the gum fell out of my throat and hit the the wood floor beneath. I don’t remember her reaction or mine. Except that surviving what could have been my accidental death gave me an idea about how to die on purpose.

Not long after, without telling anyone, I attempted suicide in the room I shared with my brother, the walls papered with Disney characters. I took out the gum I’d hidden, unwrapped and chewed as much as I could fit in one cheek, and fell asleep. I reasoned I’d be dead by morning from choking.

Unsentimental. Unceremonious. Just like that. I had followed a course of logic.

It is possible for those of us with Asperger’s to run on that kind of cerebral autopilot. Feelings might be as far from the sides of the plane as clouds and as invisible as turbulence. Until dark lightning penetrates the craft. Irradiates us. Months or years later, we may finally come to feel its effects.

So what? I survived till morning. I woke up. And I was disappointed–not disappointed in a keen, piercing way, but disappointed as a dull inevitability, as dull as the thought I often had as a child that I would run away if I had somewhere to go. The truth is, I wanted to run away as much from myself, from what I was and how I had been defined, as from any place: that American beauty of an outwardly ideal family life.

What’s in a name? On the loss of Asperger’s.

As many media outlets have reported, in late May 2013, the DSM-V eliminated Asperger’s as a separate diagnosis and merged it with Autism Spectrum Disorders. Most Aspies, as far as I can tell, continue to make a distinction. Wherever I find Aspies talking about this diagnostic restructuring (e.g., in the media or in Wrong Planet forums), they seem to be holding on to a distinct identity they have proudly associated with verbal acuity and high intelligence. They want to distance themselves from the greater perceived dysfunction of Classic Autism. For me, however, there’s no sense of loss. That’s because, despite some apparent behavioral and emerging, neurological fine points (such as those suggested by a recent Boston Children’s Hospital EEG study suggests), I believe that we’re more related than not. The distinction is a question of degree rather than difference.

Both Aspies and Classic Autistics have trouble, for example, with executive functioning. Weak executive functioning takes different forms, giving us difficulty in organizing thought into sequence, sequence into schedule, schedule into action plan. Or, difficulty in big picturing over detailing, detail to the exact degree, to be accurate, true, perfect, right to the idea.

Or, difficulty in coordinating movement, fine or gross, unless we put all of our attention there, and then, it’s finally focused. Bang. Some of us even join the circus–yes, I know a professor whose adult Aspie daughter has trained for and joined a circus, and on the high-wire no less, but that’s another story. And it’s a lot more usual for us to have trouble chewing gum and walking at the same time, anyway. Which is not a joke. I once saw my father, who I suspect is more than a little like me, let the gum fall right out of his mouth when he shifted inwardly to concentrate on walking up an incline at the mall. A gentle incline meant for rubber-tipped walkers and baby strollers. A healthy man in his 40s. Put it another way, we are better at processing geometric stimuli than biological motor stimuli in performing tasks. Go figure.

To wit, both Aspies and Classic Autistics have issues with sensory processing. As a for instance, our brains don’t filter sound well. We hear everything, even minute sounds, and we hear them all at once (again in researchese, we have a biochemically defective signal-to-noise filter — and that same brain mechanism for sensory processing may be related to social functioning). If someone speaks to us through that weave of everything, we have trouble hearing them or concentrating on what they are saying. We’re more likely to hear a conversation on the other side of the room. There’s even some evidence that like Classic Autistics, our brains don’t reward us for feeling a human touch or hearing a human voice. And why would you listen for something that didn’t bring you pleasure on a level so primitive you don’t even have to think about it? Maybe that’s why we sometimes turn entirely inward, unable to hear a thing, even when it’s crashing around us, because we’re in another place, one inaccessible to anyone else. We’ve got that in common, too.

Aspies are often incredibly verbal, and that seems like one big difference between us and Classic Autistics, who have trouble communicating verbally. We talk too much, use too many big words. We monologue rather than dialogue. But, we also stop up when it comes to talking about feelings. When we feel something strongly, our nervous systems overload. Tears well up and fall. Hands shake. Words stutter and fail. There’s a surging feeling inside, blood, electricity, blanking light, and very nearly a ringing in the ears. Sometimes we, too, have meltdowns. Flailing arms, or a panicked rush away, or a repeated verbal push back against the assault, “No, no, no!” The overwhelm requires a response, to force the feelings back down, to keep from drowning on the inside. Or, if not drowned, we are cast out, literally beside ourselves. It’s a terrible, naked place to be, skinned before the world.

The good news is, there’s comfort for all of us in patterns. Patterns of all kinds. Pattern, period. This can be the pattern of a structured environment and an expected schedule. The pattern of interaction with familiar people. For Aspies, familiarity often breeds attachment, just as when the android character Lt. Commander Data on Star Trek: Next Generation, who is supposedly programmed without feeling, describes his form of affection as being “used to” someone. Anyone who we couldn’t get used to we’d keep at a distance, circumstances allowing; those we do allow close have been welcomed on purpose and for reason, even if we don’t look at them, or hug them, or say their name. They don’t rub us raw like the rest of the world. What a strange description of love, you might say. But it’s love just the same.

Then, there are the classic patterns in which we find comfort: a sequence of numbers, an organized image, a piece of music. Repetitions with variation. These are sometimes so comforting and so absorbing that we are disturbed when they are disrupted or when we are unable to follow them through to the finish. Teachers sometimes call our difficulty in leaving a pattern “trouble with transitions.” That does not really capture it. Our head is immersed in a model of our own making. That model might be a collection, a fictional world, a machine, an array of arresting colors. Being asked to transition is more like, in TS Eliot’s turn of phrase, daring to disturb the universe. It’s not the universe outside that is being disturbed; it’s the one we’re building in our heads.

When I First Knew What To Call It: Asperger’s

When my son was in the first grade, his teacher became alarmed. He didn’t seem to be picking up on social cues. He would wander off to do his own thing when the other kids were dutifully lining up. He didn’t understand why he had to wait there when they were going outside anyway. The rocks and bugs were more interesting than the other kids jostling to be first or last. That he was alone on the playground studying the world didn’t bother him a bit. It bothered his teacher a lot.

Her brother had been different like that, she told us, and his life hadn’t ended up as successfully as she and her parents had hoped, given his creativity and intelligence. He was a nomad wandering somewhere in California (from the Midwestern perspective, a wilderness). She didn’t want that for our son. We wondered. So we got him tested. The diagnosis was Asperger’s.

We had difficulty accepting the diagnosis. My husband and I are both intellectuals: artistic, nerdy, odd, introverted, quick. We’ve navigated the world all right, without any diagnosis. We’ve each worked at highly demanding professional positions. We have advanced degrees. We worried that Asperger’s would be a label that would stigmatize our son, following him through school like a bad odor, keeping him from opportunities he deserved, like gifted classes. Kids with Asperger’s, despite their gifts, can be work to manage in a classroom, and the fact is that many teachers who teach gifted students are used to them being well behaved and focused on good performance. Kids with Asperger’s are interested in what interests them, and not in performing for its own sake. They can be excessively talkative, poorly self-organized, inclined to give or receive social cues that are off base, easily frustrated, and go off task as soon as they are the least bit bored. But, as it turned out, the thing that led us to out our son at school wasn’t any of these things. It was his poor handwriting. That’s typical of Aspies, too. We have fine motor and gross motor issues, and his were pronounced. As it turned out, some of our fears about stigma came true, but our hopes that he would find support and nurturance came true as well. Now that he is in middle school, we are glad that we came out at school.

But then, there is me and my own decisions about whether to hide or reveal my Asperger’s. I learned during the process of my son’s being diagnosed that I have Asperger’s too. It had never occurred to anyone before, not even to myself. I fit the criteria to a “t,” all of it. What was so surprising at the time was that each of the different aspects of myself I had assumed were entirely separate, chance developments, functions of experience, or personality, were so comprehensively related and grounded in neurology. These differences were hardwired into my brain. I had trouble accepting that. I didn’t want to feel so determined by the physical. I was a mind riding atop a meat vehicle, one that I and yes, perhaps my culture and experience, had shaped; not a meat vehicle that had manifested a certain type of mind through electrochemical patterning. Eventually, I did accept that I have Aspergers, and that having Aspergers has impacted every relationship I’ve had and every choice I’ve made in my life, the good and the bad. But I wouldn’t change who I am. The way my brain works has given me significant gifts, abilities and pleasures, even if it has cost me. And I am raising my son to see the value in who he is, in who others are, whatever our difference.