a parliament of owls

life with asperger's

Tag: workplace

On Embracing Neurodiversity in the Workplace

I thought I’d be content to go throughout my life without an official diagnosis for Asperger’s. I am almost 50 years old, have earned a doctorate degree from a top graduate program, and have a satisfying life with family, a handful of good friends, and passionate interests. Imagine my surprise when my most recent work environment forced the issue of a medical diagnosis for Asperger’s.

Without one, it is not possible to legally secure workplace accommodations for this disability. An Aspie can ask for them (I asked for written guidelines and deadlines for major projects), but if an employer declines to volunteer them (as mine did), that is the end of the discussion, even if the accommodations are free-to-inexpensive, enhance productivity and success, and, well, for want of a better term, are the humane thing to do. In my case, the medical diagnosis is taking so long to get (I started in early August and am still testing in November, with results expected in February), I left that workplace to start my own business. I’m continuing to pursue it as insurance against the future. In the meantime, I’m struck by how my leaving might have been avoided, that is, what my employer might have done to successfully retain me.

My most recent employer was a mental health provider embedded at a major public university. I’ve had a couple of decades working at the university in a variety of positions (doctoral student, teacher, administrator) and met with a lot of success: awards for teaching, invitations to return from previous supervisors, compliments all around. The university ought to be a good place for Aspies — human resources says that lots of Aspies work as faculty and graduate employees. The university embraces diversity and advocates for the integration and success of everyone, including those with disabilities. This is not just an occasional value, but one that is expressed daily; it’s a major initiative of the still relatively new Chancellor’s.

But the fact is that the mental health unit for which I worked within the university had the most trouble handling my Asperger’s traits of any employer with which I’ve worked across my lifetime and certainly at the university. The administrative team there placed a premium on social competency, especially the social masks and rituals  that represent this for highly conventional people. The director in particular placed a premium on extroversion, expressing the belief that coming together at social events was a demonstration of workplace affinity. Disagreeing with a colleague, even on a point of fact, expressed however professionally, was viewed as placing one’s opinions over others, as being inherently non-collaborative. We had to wear matching team shirts with unit logos to events.

Although I was given a private office (for which I was grateful), my office was one that was off of a lunchroom and group workspace that was actively used. The walls were so thin that counselors could not meet with clients in it, since they might be disturbed by the regular conviviality there. My supervisor once remarked she had chosen that office for me because she sensed I wouldn’t interact with others otherwise. As it was, I had to work with my door closed most of the time, or I wouldn’t have been able to think. It was often so loud that I had to wear headphones with the sound off just to dull the noise. Like many neurotypicals, she misunderstood my need for low sensory stimulus as a lack of sociability, even though I voluntarily went to lunch with coworkers nearly every day.

What does it mean to embrace neurodiversity? First, it means doing so after establishing, in the case of a staff member such as myself, that the person is qualified for the job and capable of performing it satisfactorily. Second, embracing neurodiversity in the workplace means an employer must assume the Aspie employee is goodwilled. That is, that even when the Aspie seems to do something inappropriate or express something in a challenging way, the Aspie has not necessarily meant to go astray from the expected and the usual. If an Aspie errs, the supervisor can pull the employee aside for a private, non-confrontational discussion, with guidelines for doing better if the situation comes back up. The assumption, again, is that the Aspie has no ill will; the understanding is that the Aspie has a social deficit that sometimes leads him or her to err.

This error, by the way, is often not of the kind that is against company policy or evidence of a failure to perform; it’s a behavior that, to varying degrees, doesn’t fit a social norm. It might include grooming habits (I hope not in my case!), conversational style, body language / movement (such as stimming — when I stand still, I pivot at the waist, allowing my arms to swing), or other coping mechanisms (for example: I sing under my breath in stores as a means of dealing with social anxiety — something others can misunderstand as talking to myself; I doodle in meetings to focus attention — something others can misunderstand as a lack of attention). This is an incredibly important accommodation, one that costs nothing but ego and patience and saves much, in enabling the company to gain the Aspie’s expertise and to retain a qualified employee.

In my case, my qualifications to do the work well weren’t in question. I’m good at what I was hired to do, even if it used only a subset of my skills. I enjoyed the work and my co-workers. I believed in the mission whole heartedly. But, here’s the rub: Despite being supportive of others, funny, a good listener, a creative contributor, a hard worker, and I think generally a kind presence, I have certain rigidities of character and modes of expression that can ruffle feathers. My rigidities, common among Aspies, are these:

I don’t tend to accept any policy, procedure, belief, or statement of fact without analyzing, questioning, and critiquing–I research everything extensively. I don’t accept anything on authority. To the good, I often do what I’m told anyway (I believe in the value of hierarchy) and I don’t always express my critique, but I have an informed basis for my every opinion.

I need my expertise to be respected. When I offer an informed assessment, I need that to be heard and considered. I’m not a spontaneous, off the cuff, impulsive person. When I assert an assessment, I’ve put hard study into it.

I resist having work that is put into my hands taken away without good cause. Work is important to me — not just in order to achieve career advancement or because I get paid to complete it. I care about the substance of what I’m doing, and it interests me. It is more important to me than status or being well liked.

I expect others to follow regulations and agreements as they are stated and written. The university asks employees to take an online ethics course every year. The university publishes manuals of policy for a number of areas. Each unit has its own policies. I expect everyone to follow them, and I do my best to follow them myself.

On top of this, I more than believe in being accurate and truthful. I am driven to be. So I won’t fudge numbers, and I won’t lie. I can withhold from disclosing things, but not if I believe it is going to cause harm.

I am inclined to tell the truth, even when that’s not socially expected or comfortable. For example, I once offended colleagues at a conference when giving a paper because I critiqued a certain feminist stance. I’m a feminist, but I’m open to critiquing everything. I don’t feel inclined to offer unwavering support of any position just because it’s politically strategic to do so. In friendly conversation, I’ve learned to be less forthcoming. For instance, if someone presses about family plans at holiday time, I’ll eventually reveal I don’t have much of a relationship with my family of origination, and that I’m good with that. In fact, I’m better off. I know that is going to make the person asking uncomfortable, but, well, they asked, and usually, now that I’ve amended my too forthcoming ways, they’ve asked twice and seemed genuinely concerned or interested.

This could all be code for being an unbearable boor, but I don’t think I am. I try hard to be respectful of others’ time, to listen to and incorporate their understanding and ideas, and to stay with what’s relevant and useful rather than marching to my own drummer. I believe in being useful, and I’m devoted to kindness as a practiced virtue. But again, and I’ll acknowledge this, that on the points I’ve mentioned, I’m not that flexible.

Although I’ve learned to choose my moments and to soften my language, if I think something is mistaken or broken, I say so. My way of doing so is often direct. I’m not very good with all the social rituals people perform in those moments to save other people’s egos. I don’t build relationships well through small talk, so I often don’t have the personal relationship with a boss or a coworker that might cushion the impact. I focus on logic and reason. And again, the most problematic thing seems to be that I don’t speak like this unless I have already done my homework. I don’t promise that I have the only point of view or the whole story, but on the particular point of exception I raise, I have strong evidence and I’m clear on why the issue matters (or should matter) to the organization. Because of this, I don’t give up readily when someone assails it, no matter who they are, unless they can show me where I’ve missed something. I can stop arguing and save it for later if needed, but I’m not likely to back down.

I’ve had many people tell me that if I were a man, this style of interrelating in business would be much more welcomed by others. Aspie women tend to have more masculine behavioral traits, and there’s some evidence that we have brains more physically structured like men’s. More generally, Aspies have a blind spot in their ability to envision how they are perceived by others. This is where our theory of mind deficit shows most glaringly. If we tend to focus little on what others are thinking and feeling, we focus even less on what they are thinking and feeling about us. We’re puzzled by their reactions, and puzzle about them at length long after things have gone better or worse than we assumed.

Most often in the workplace, the people who have difficulty with the kinds of traits I’m describing aren’t coworkers but supervisors. When Aspies seek accommodation for high functioning autism as a disability, it is often after they have had conflict with a supervisor.

Let me say that I have been fortunate in many of my supervisors over the years, perhaps for different reasons. There are supervisors who are willing to accept an eccentric or challenging employee when that employee is also exceptionally talented and able, meets deadlines consistently, and is willing to go the extra mile. There are supervisors who see themselves as eccentric and challenging, and find those traits in others amusing. There are supervisors who are incredibly generous and open-minded, and accept a broad range of diversity in their employees. There are supervisors who tolerate whatever they must, dragging the weight of the world behind them and just grateful that others are there to help with the lifting. There are supervisors who are remote enough that whatever they do experience of the odd or challenging doesn’t much affect them, so long as the work is done and done well, measured by whatever means of tracking they have devised. There isn’t only one kind of supervisor who works well with Aspies — fortunate for us, there are many. The supervisors who do less well are those who place a value on simple obedience, social conformity, and extroverted demonstrations of loyalty or sociability or who themselves aren’t ethical, competent, or invested in the work. I have learned how to suss out these last three, and haven’t put myself in the power of an incompetent, unethical, or non-work oriented supervisor for many years now. They’re the worst of the lot.

The bottom line is this: When an employer commits to neurodiversity, that commitment entails some training, some personal commitment (especially by supervisory staff), and some sacrifice. If it was natural and easy to do, it would not have to be enforced under federal law or expressed as an organizational value backed up by policy. Embracing diversity of all kinds, especially around disability, means reconditioning how we think about one another’s needs in the workplace and extending ourselves to meet them so that we can gain the benefit of a diverse staff. It also means opening up our hearts and committing to being humane even when we feel personally discomforted or challenged. Difficult, yes, but I hope, and I have to believe, worth it.

Missing Signals: How People in the Workplace Let You Know You are “Different”

My current workplace has made a major commitment to “multicultural competency,” embracing diversity and inclusivity in the broadest sense — the way only a mental health provider embedded within a major public university can. Now that I am “out” at work as a person with Asperger’s, you would think — if people were walking the walk instead of just talking the talk — that they would be supportive of my neurodiversity. Some are. But some aren’t even trying to break a sweat, and this post is devoted to one means in which they signal their discomfort with my difference — or, rather, with the behaviors that result from it.

Earlier today I attended a “Multicultural Competence Committee” meeting, in which other new employees and I were oriented to the professional and personal development we’ll do over the next year in order to grow in this area. Let me say that I embrace diversity and inclusivity wholeheartedly. I don’t know that at this stage in my development I require a formal intervention, but I’m willing to see what’s possible. At the start of the meeting, we were invited to share our complex identifications with one another. Several people went before me (I chose to wait), and I enjoyed getting to know them better and learning their self-understanding and how it had evolved over time. For most people, race and gender were important identifications. For me, they have always seemed imposed from without rather than accepted from within. I explained this, and a number of other identifications in which I’m invested when I noticed the Chair look at the clock. I realized I’d gone on too long and wrapped it up. It might have been a kindness if he had given a more explicit signal sooner, since we Aspies can work up a monologue when a topic interests us — and cultural identification (my own and others’) is one of those things for me. But he meant to be kind, and that counts.

So what does the next person do? Does she begin her own story straight away? No. Like many people I encounter who believe I’ve violated a social norm, she indirectly announces that fact. She starts her statement with something like, “Well, I could go on with my story for twenty minutes or more, but I’ll keep it short and focused. There’s a lot more I could say, but I’ll just say that…” Ah. Now that got through, even in my dimmest moment. She has called me out. She has complained. She has done this indirectly, and in a fairly neutral tone, so it doesn’t seem that I can challenge her — nor would I, really, since she has a point. But the why of it troubles me.

Why, with her knowing that I have Asperger’s, does she still feel so put out that she must say something to the group to make the moment worse rather than better? Couldn’t she pull me aside later, if she really needed to say something? And, ironically, why would she do this in a forum designed to promote the acceptance of difference?  A possibility is that even though she knows I have Asperger’s the social deficit it imposes so closely mirrors intentional lapses in etiquette or social awareness that her default response is to take exception. That’s why Asperger’s is often called an “invisible disability.” We look normal, but we’re not. When I get caught up in a topic of interest (some call it an obsession), I enter a kind of flow state. I am transported somewhere else. Because I’m a professional with decades of practice in the world of work, and because I want to be the most pleasant and least annoying companion possible, I usually remember before it’s too late — I follow the time, or monitor my listeners. That’s how I noticed the Chair looking at the clock. But it’s not a strength, let’s say, even with so much practice.

This can happen even when I am asked a question. The detail, specificity, and intensity of my answer can make other people nervous, bored, annoyed. That happened at lunch today. One of the new staff asked a question about a notice he received about his utilities. I explained the concept of power aggregation, how it had been a subject of local city / county voting (aggregated plans leverage the collective bargaining power of consumers to reduce rates) now that it was permitted under recent changes in state law. He accepted the information well, since he was interested in making a prudent financial decision about his utility plan, but the other people eating with us went afterwards into long sweeps of how the question was so complicated and detailed they could not possibly form an opinion on it. I had just explained all of that to him, and recommended in favor of remaining with the aggregated plan, so what were they really saying? Their response was over-the-top dramatic enough that I believe they were expressing their pain at having to contemplate the details they had previously avoided as too dull and/or confusing. But again, in the form of an indirect, publicly aired complaint.

These co-workers also know that I have Asperger’s. I wonder if I was less tolerant of their differences what kind of indirect comment I might make about them in public? That kind of comment would certainly be less socially acceptable to make. And so we find that there is still a ways to go in understanding and even further toward acceptance.

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.

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.