a parliament of owls

life with asperger's

Awkward Disclosures: On How to Handle an Autistic’s Coming Out

One of the topics that comes up often on online autism forums is whether and how to tell others about one’s autism. The naïve believe it will make an enormous difference in their relationships. Recently, I mentioned to someone I know that I’ve come out to a few new people lately, and she fell immediately into this assumption. She beamed about how wonderful this must have been for me. How do you mean? I asked. To feel so much support, she said, now that everyone understands you. Oh, I said. That’s not really how it works.

Typical responses vary from people who are kind and mean well. Many just thank me for sharing the information, and that is fine. It’s not dissimilar to one person telling another that they have diabetes or a child who has profound hearing loss. Most people have some kind of personal or family challenge that they are dealing with or have dealt with. Sometimes people ask a question or two, and that is also fine. I do not have any kind of reticence about discussing autism. I am fortunate to have received profound cognitive gifts from my neurology. This is not always the case with autism, but it has made me feel less like I have a disability and more like I have a sometimes fortunate, sometimes unfortunate difference — I could not have one without the other, so I accept them both. Besides which, autism is not just a disability diagnosis, or a difference in cognitive and emotional style, but an identity. I belong to the autism community and am a parent-advocate for my son. I welcome the chance to explain, when that is invited.

There are moments, however, when even kind and well-meaning people do not realize their initial responses are problematic. They haven’t been immersed in the rhetoric of the autism community, but have encountered discussions of autism in their personal lives or in the media that are partial. I don’t take these more problematic responses personally, but I’d like to discuss them here so that others who encounter them might be better prepared to address them. Learning what responses are problematic and why might also help non-autistic people to answer with greater sensitivity when learning about someone else’s diagnosis for the first time .

These initial responses have all been said to me.

Didn’t they get rid of Asperger’s?

Sometimes, when I tell someone I’m autistic, I mention that I’m at the higher end, like Asperger’s. Their well-meaning question might suggest that they think Asperger’s has been ‘disappeared’ as if it never existed, as if high-functioning autism were a fad diagnosis that has since been debunked. High-functioning autism has never been an actual diagnosis. It has been used colloquially to describe people like me who have a medical autism diagnosis but no cognitive impairment or language delay.

Asperger’s was a separate diagnosis until the revision of the DSM in 2013 (and it is my son’s diagnosis, since his was assigned in 2009), when autism spectrum disorder was created to encompass a range of pervasive neurodevelopmental disorders that include Asperger’s, autism, and PDD-NOS (pervasive developmental disorder not otherwise specified). Experts made the change out of a sense that this was a more accurate, scientific, and helpful way to describe the range of disorders, which can be difficult to differentiate from one another. So, as well-meaning as this question may be, it is similar to saying, Wasn’t that something people just made up? Don’t we know better now? The answer to both implied questions is no.

Here is how ASD is now defined:

“DSMV 299 Autistic Disorder (also known as Autism Spectrum Disorder)

Must meet criteria 1, 2, and 3:

  1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:
  2. Marked deficits in nonverbal and verbal communication used for social interaction:
    b.  Lack of social reciprocity;
    c.  Failure to develop and maintain peer relationships appropriate to developmental level
  3. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:
  4. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
    b.  Excessive adherence to routines and ritualized patterns of behavior
    c.  Restricted, fixated interests
  5. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

The social and communication deficits used to diagnose autism spectrum disorders with the DSM-IV have been merged into a social/communication deficit domain. It is important to note that a statistically significant delay in language will no longer be needed in order for an individual to be diagnosed with autistic disorder using the DSM-V.

To help differentiate between what was once Asperger’s Syndrome, PDD-NOS, and autistic disorder, the American Psychiatric Association (APA) will propose severity criteria.”

Isn’t there a lot of over-diagnosis of autism?

Maybe. There’s a lot of self-diagnosis going on, certainly, as people hear about autism in the media and wonder whether it applies to themselves or someone they know. I understand people who self-diagnose or who are autism-curious as being on a life journey. There’s nothing wrong with asking the question and exploring. How else would they come to an understanding of the traits they associate with autism or ever come to seek a medical diagnosis? But it’s important to leave a question mark until the self-diagnosis is confirmed by an expert, and it’s important to find an expert, which can be difficult for adults.

Testing for adults has not been standardized, as it has largely been for children, and it takes a particular expertise—even more so when testing is done for a woman. When Asperger’s and autism were first defined, they were understood as male phenomenon, and they can manifest somewhat differently in females. Testing should also be rigorous, not the result of a short conversation. It should include empirical testing as well as questionnaires administered to the person under diagnosis and someone who knows that person very well. Not all autisms are exactly alike. There are clusters of associated traits, both cognitive and physical, but the definitional traits remain the same and have to be clinically validated from early childhood forward; autism is a neurodevelopmental difference, after all. It does not spring on someone in their adolescence or later.

Why are so many more people getting autism these days?

Experts can’t say for sure, but most suggest that there aren’t more autistics than there were historically. Our criteria for diagnosing autism have broadened, so there are more people that we consider to be autistic than would have been considered autistic in the past. That is, we are now more aware of people who have autism than just those with the “classic” form that is associated with cognitive and/or language impairments. Whether there is value in recognizing a neurodevelopmental relationship along such a broad spectrum of severity is probably a more interesting and useful question. Since our culture has come to value an extroverted ideal at work and school (Susan Cain’s argument in Quiet), I would argue that there is. Autistics not only tend to be introverted, but unable to achieve conformity to extroverted ideals. We just seem a bit off, even when we mean to be friendly.

As for our numbers, researchers continue to find evidence for the importance of genetic inheritance with autism, or autisms (see here, for example). There do seem to also be some de novo, or single-generation, incidence of autism, but these don’t appear to be the majority of cases.

Then, too, with more attention given to autism by doctors, schools, and the media—it has become a kind of ‘cause of the day’ for kids, especially in helping them to succeed in school, as once was the case with ADD / ADHD—the more we find that people are seeking diagnosis or being recommended for it, children by teachers and other professionals at school and older people by realizing that younger relatives’ diagnoses might mean something for the difference they have noticed in themselves all their lives. My son’s first grade teacher recommended that we get him diagnosed. She didn’t use the word autism, but she felt something was different and she was concerned for him. During the long process of getting our son diagnosed, I was floored to find that his diagnosis fit me just as well. Five years later, I sought my own diagnosis. We added two more to the growing number of diagnoses, but that does not mean that these diagnoses are without merit in their basis or without benefit to us.

When some autistics hear this question, about whether there are more autistics now than in the past, they hear an implication that autism is a modern invention, and this echoes other forms of autism denial. It is certainly true that whatever presented as autism in the past was understood as something different and described in other terms, whether that was eccentricity or madness or unsociability or mania or idiocy. As a culture, we have agreed to treat autism as a medical condition, which is at once more gentle, and yet again continues to be an issue for some of us who do not wish to be pathologized in our difference.

When I mention a challenge I have as a result of my autism, such as my extreme dislike of being touched by non-intimates or by surprise, my sensory sensitivity (sound, heat, bright light, etc.), or the stress that certain forms of social interaction cause (e.g., unstructured or casual, those requiring conflict resolution, those placing attention on me rather than my work), I am sometimes told, Well, lots of people have an issue with x or X stresses me out, too.

Experts and advocates sometimes call autism a “hidden” or “invisible” disability. Because others can’t see it, like a person who requires a wheelchair, they are often unaware of it. There is nothing wrong with that; it is easy for high-functioning autism to go unremarked during casual contact. However, when people do become aware of it, they often assume the disability to be the result of personality or preference. That assumption is problematic.

We don’t assume someone in a wheelchair prefers not to walk, when the cause of their being in one is explained. The same should be the case with autism. We should assume that there are certain hardwired tendencies, such as sensory sensitivity, that are extreme enough to be disabling and that require our consideration.

Take one of my son’s classroom teachers, for example. Even knowing he has Asperger’s, she told me he was doing poorly in his learning group because he does “not prefer” working with others. Yes, I told her. He is autistic. He does not prefer it, and he cannot be taught to prefer it. He can be taught how to do it better, but will only be able to tolerate limited amounts of interaction. She had been assigning group work for both periods of her course every day for the entire school year, and wondered why he couldn’t overcome his “negative attitude.” He receives no additional supports for group work, and has had no ability to opt out – that is, until we recently revised his school plan to allow for that because he had become so stressed he no longer wanted to go to school.

Similarly, in order for the stress from certain forms of social interaction to be disabling, it must be so stressful that it causes dysfunction or harm. It is not the normal kind of stress that someone feels in a challenging social situation; it is similar – and not outside of the scope of human experience – but there is a significant difference of cause, degree, and effect. To suggest otherwise is to mistake a disability with a normal challenge. Again, one would not do this with visible disabilities; the same consideration should be given to invisible ones.

A particularly sensitive autistic could interpret this sort of response as expressing disbelief or denial. They might understand the person they’ve told as saying, I don’t really believe you’re autistic. Everyone feels that way sometimes or That’s not really a big deal. Lots of people have that experience instead of something more kindly meant such as Yes, I feel that way sometimes, too–I can sympathize or You don’t seem disabled–I find you to be a very capable person.

I know a child who is autistic, but he’s really autistic.

When I hear this, I always feel a surge of sympathy. To know a child who has classic autism is to long for that child to have the best life possible and to understand that his (or her) family often deals with a profound level of stress as they negotiate with financial demands and support services. I would never compare my challenges, or my son’s, with what people and parents with more profound autisms must go through.

A particularly sensitive autistic could understand this well-meaning person as suggesting that he or she does not really have autism, or an autism worth noting, because it is not the same as “classic” autism or does not come with the same severe challenges. It is important not to seem to be comparing when what one seeks is understanding of the observed difference–If these are called the same thing, why do they seem so different? That is a reasonable question. Autism presents as a spectrum of severity, and this is the vector by which autisms are now differentiated.

Autistics also share clusters of traits, which are not definitional (they don’t lead to a diagnosis of autism but are often found to co-occur, although not all together in the same person). These trait clusters include non-verbal learning disability, verbal disabilities, gross motor and fine motor challenges, weak core muscle development, digestive problems, obsessive-compulsive disorder, and more. Again, it is the definitional traits, the core traits, that unify the diagnosis, even if they are not all experienced at the same level of severity. The level of severity is important, and can make a profound difference in lived experience, but it should not be used to differentiate between autism and not autism.

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The New (Ab)normal: On Being Diagnosed as an Adult with ASD

During my first meeting with the adult autism diagnostic specialist, we discussed how trendy high functioning autism / Asperger’s has become (it’s commonly referred to now as the new ADHD), and how this trend has driven more people than ever to seek diagnoses for their children and themselves. For many people, that search begins on the Internet, when they take one of the handful of interactive diagnostic indicators, such as The AQ Test, based on Baron-Cohen’s work. Sometimes, they stop by the forums on Wrong Planet or Reddit to ask whether that means they have it, and we always tell them the same thing. It’s one indicator, there are many related diagnoses, and only a professional can tell you for sure. The reason I had been so certain in my self-diagnosis is because psychology has been — at least since my undergraduate years — a special interest. When my son was diagnosed, I began to read autism research and literature continually. I had a good foundation in differential diagnoses by the time I sought an official diagnosis. And yet, I felt trepidation. What if I had been wrong? What if my self-understanding was not confirmed?

So that was my state of mind when, in our initial consultation, the assessment specialist (let’s call her Dr. L) and I agreed that Asperger’s is over-diagnosed — for my part because I wanted to assure her that I wasn’t seeking a diagnosis as a result of its trendiness and for her part, perhaps, because she wanted to prepare me to be disappointed. Dr. L explained how rigorous the testing process would be, and how much of it would seek to validate the different diagnostic dimensions that add up to autism through quantifiable means. There would be self-reports (covering everything from sensory processing to obsessive compulsivity to attention to mood) and a report from my spouse (someone who knew me well that I was permitted to choose). But there would be much more tests of reasoning and aptitude: IQ, attention, executive functioning, empathy (ability to recognize emotions on faces and by voice), space-time, reaction speed. My social interaction with the assistant conducting the tests was even being analyzed, as well as my mannerisms and grooming, as I discovered later from having read the lengthy report. Of all of these, Dr. L explained, the IQ test served as the foundation of everything else. What she would be looking for is variation between different areas of ability. The degree of variation would be indicative of autism.

By my choice, we completed all of the necessary testing within a single month (November 2013) over the course of 4 sessions that lasted 2 hours each. These were in addition to the initial interview and the self-reports, which I completed at home over another 3 hours or so. It had taken me nearly 3 months to initiate the first appointment (mid-August to end-October). Once testing had ended, it took another 3 months to get the report (February 2014). Dr. L met with me to explain the diagnosis and answer any questions I had, and then provided the report for pick-up about a week later.

The diagnosis: “Autism spectrum disorder; level one severity; without accompanying intellectual impairment; without accompanying language impairment [299.00].”

299.00 is the diagnostic code from the DSM-V for Autistic Spectrum Disorder. Autism Spectrum Disorders include Autistic Disorder (AD), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder (CDD), and Rett Syndrome. The DSM-V famously eliminated the Asperger’s diagnosis as a separate category in May 2013, leaving those who would have been diagnosed with Asperger’s (as my son had been in 2008) to be either diagnosed as autistic or left off the spectrum (perhaps with the new diagnosis of “social communication disorder” or SCD). At the same time, the DSM-V sought to create an autism spectrum diagnosis that was “more accurate, and medically and scientifically useful.” A research team led by Kristine Kulage (Director, Office of Scholarship and Research Development at Columbia Nursing) concluded from a literature review (Journal of Autism and Developmental Disorders, February 2014) that this change in the DSM-V has already resulted in a “statistically significant decrease in ASD diagnosis of 31 percent using the new manual, DSM-5, compared with the number of cases of ASD that would have been identified under the previous version of the manual, DSM-IV-TR.” The study also found that “Under DSM-5, there was a statistically significant decrease in AD diagnosis of 22 percent, compared with the fourth edition of the manual, the meta-analysis found. There was also a statistically significant decrease of 70 percent in diagnosis of PDD-NOS. While diagnosis of Asperger’s also declined under DSM-5, the reduction was not statistically significant. In addition, the study found that some individuals who no longer met the criteria for an ASD diagnosis under DSM-5 would also fail to meet the criteria for SCD.”

So here I am today, with this hard-won diagnosis. And how do I feel? Perhaps my strongest initial emotion was vindication. My previous employer had discriminated against me based on my autistic traits, which had sent me on a path to seeking diagnosis. I had been told I would not be accommodated in the workplace, because I only believed I was autistic. I had no proof. Now, even though I had resigned the position months before, I had proof.

I felt relieved, too. My son was diagnosed with Asperger’s just before entering the second grade. It was through helping with his diagnosis (I was his intimate other reporting to the child assessment psychologist) that I realized I was probably an Aspie. Over the intervening years (my son is now in the 7th grade), we had bonded over our identity as Aspies, with traits and behaviors that echo one another and other Aspies so well that we can’t help but feel like our own tribe. To be told that this did not apply to me would have hurt terribly; I would not have known how to explain it to him. And through having participated in autism advocacy and forums, I would have felt separated from a community I’ve come to value being a part of. There would have been a loss in all of this, as well as hit to my sense of self. When I learned what Asperger’s and high functioning autism were, not just on the surface (a list of traits) but in their daily lived experiences, I had truly had a moment of self-revelation. I had understood not only more about who I was, but also that the what of what I am had been shaping the who all along. Biology may not be destiny, but it does determine some of who we are and how we are in the world.

I do not feel that I have changed or lost myself through achieving a diagnosis, but I have not found myself, either. I am the same person I have always been. I just have a deeper sense of self-understanding as well as connection with others who are (ab)normal like me.

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.

On Aspies and Empathy: Once More, With Feeling

Like some people with high functioning autism, I have an exceptional IQ, which corresponds to a potential for academic performance in the Western tradition. I attended MENSA meetings with my 5th grade gifted class teacher, who was a member, and felt at home. Everything but learning to tell time on an analog clock or doing math from trigonometry onward was easy for me. So very easy.  But, like most people with high functioning autism, I have certain social deficits. Where my rigidity of mind in things social really shows, and it’s not atypical of our kind, is in the area of ethics. It took me almost 35 years to understand at an emotional level that good people sometimes make bad choices, and that mercy, forgiveness, and kindness are more than values – they are virtues. The ground for learning this occurred over many years, but the concept finally took hold of me in my 34th year, when I made a terrible mistake. Not a criminal one, or a public one, but a personal one. I hurt someone whom I should have protected, betrayed someone I should have honored, and was, ultimately, forgiven. It was that act of forgiveness, motivated by this other person’s unconditional love for me, that changed the way I am able to feel for others.

By nature, people with Asperger’s are followers of rules and tellers of truth. We operate within systems that we have adopted. Of this tendency, Margarita Tartakovsky, M.S. writes on PsychCentral, “Because they have such a poor sense of intuition and spontaneity, people with AS rely on formal, rigid rules of behavior, making them appear inappropriately and overly formal in social situations. Some of these symptoms also appear in individuals with higher-functioning autism, though perhaps to a lesser extent.” Tony Atwood, the Asperger expert, might disagree with Tartakovsky on the point about intuition, especially with female Aspies, but we do have a tendency to conform to systems, especially those for social regulation, ethical, behavioral, and so on. These systems have two main attractions. First, they let us navigate the social world in a less thoughtful way, so that we can concentrate on our interests. Second, they are reassuring. When the social world is uncertain, because so much of it is unwritten and unsaid, certain social guides are expressed. Civic laws. Guides to manners. Operating procedures. Office policies. Dress codes. These are life rafts, and we cling to them. Except, we have a deep sense of fairness, too, the kind of instinctive, unreflective fairness that kids and dogs have. It’s unshakeable in us. I could offer some grand theory of why, but the truth is, I’m not sure why. It may be that our socialization toward gray out of the black and white of dualistic thought doesn’t quite take. We can learn about ethical relativism, we can even accept that different groups of people or different people understand and feel differently about a situation, but at bottom, we feel deeply that there is fair and not fair, which translates to right and not right. When we do intellectualize this, we argue based on reason and evidence. We don’t respect arguments based on emotion.

Of this tendency toward “systematized” “hyper-morality,” leading autism researcher Simon Baron-Cohen provides what may be a better explanation, based on how Aspies form morality by learning explicit rules rather than feeling what others feel: “My own experience of people with high-functioning autism or Asperger’s syndrome,” he writes, “is that they are certainly not just capable of morality, but may even be hyper-moral, wanting all of us to follow the rules in a precise way and to the nth degree. Some become the whistle-blowers when they spot the rules being broken. While many ‘neurotypical’ people arrive at their morality via a very visceral empathic route, responding emotionally to another person’s distress, other people (and this includes many with Asperger’s syndrome) arrive at their moral code through a logical route based on rules (systemising)“ (The Lancet, Review of Deborah R. Barnbaum Does Autism Need a Cure?)

Aspies tend to hold people accountable, ourselves, our parents, our governments, our classmates, our bosses. We have a tendency to judge. We have a tendency to be certain and immovable in our judgments. I’ve left more than one highly regarded and well compensated professional position for ethics alone. I am a person who cannot, will not, compromise on integrity. At nearly 50 years of age now, despite my study of and adherence to Buddhist doctrines of compassion, I still can’t shake it. I’ve gotten to a place where my judgment of another person’s wrong doing doesn’t necessarily make me wish them to be punished or rejected – or every now and then, corrected, at least if the harm they do is slight. I have over time, despite myself, experienced a slow inward revolution in my feeling toward others’ failings. Sometimes I feel sad for them instead, for the choices they’ve made and for what those have cost the people who have loved them or believed in them.

Like most people with Asperger’s, I’m high minded, an idealist. I believe in altruism, that it can and does exist, in human rights, in social justice for everyone – especially the politically and socially disadvantaged, in animal rights, in the value of peace, in the nobility of duty, in disinterested kindness, in the rule of law. Expert on gifted education, Psychologist J. Webb, Ph.D., has associated these tendencies with the gifted in general.

“It has been my experience,” Dr. Webb writes, “that gifted and talented persons are more likely than those who are less gifted to experience spontaneous existential depression as an outgrowth of their mental and emotional abilities and interactions with others. People who are bright are usually more intense, sensitive, and idealistic, and they can see the inconsistencies and absurdities in the values and behaviors of others (Webb, Gore, Amend, & DeVries, 2007). This kind of sensitive awareness and idealism makes them more likely to ask themselves difficult questions about the nature and purpose of their lives and the lives of those around them.”

I’ve read articles in which people reflect on this seeming paradox among Aspies–wondering how we can hold to such ideals when we seem, according to certain definitions of high-functioning autism, to lack empathy (generally, understanding how another person feels and perhaps also sympathizing with them), and to have inadequately developed theories of mind (generally, seeing things from other peoples’ perspectives, understanding what they are thinking and why that might be).

Initially I believed that high functioning autistics, at least from what I understood from forums where we talk with one another about this, experienced a continuum of empathic ability that ranges from those of us who feel deeply what others feel, sometimes too deeply, and those to whom the feelings of others are more of a distant puzzlement. My ideas about this have changed, and I’m glad to see that my revised understanding has found some validation in research within the last five or six years.

Here’s why my thinking about high functioning autistics’ capacity for empathy changed. I have long been aware that theory of mind (aka cognitive empathy), upon which emotional empathy is probably largely based, can be enhanced through instruction, which for us Aspies must take a direct form. I’ve spent my entire life studying human nature intensively, including social interaction. It’s why I earned undergraduate degrees in psychology and literature. This study has given me greater insights into human thinking, feeling, and behavior, individually and in groups, within and across cultures, than I would otherwise have had, not just as an average person, but also as an Aspie. I would not have gained them through osmosis, or whatever its social equivalent might be. My mind would have been elsewhere. If human nature and social interaction had not become one of my earliest and most persistent obsessions as an Aspie, where would I be? Living among aliens, I’m certain.

I had a signature learning experience of how greater understanding of another’s thoughts, of being in the world, can open up a whole region of emotional empathy that I had previously been lacking. Not with people, but with dogs. I grew up with cats, rather than dogs. I did not understand the dog mind, or dog being, or dog feeling, until later in life when I adopted one myself as a adult, one I could live with and keep close over time. My dog Ozzie (a chow-black lab-pitbull mix named after the Land of Oz), I learned through observation, had a sense of ownership. He knew what belonged to me (my chair, my shoes) and what belonged to him (his toys). He was able to signal gratitude (coming to thank me after I had fed him). He felt protective not only of his territory, but also of me when others approached. He could feel and return affection, but there were limits to when and how he wanted to be touched (not on the belly, not when tired). When I came to understand this particular dog well enough to develop a dog theory of mind and to know a particular dog’s variation of that in his own personality, I became deeply sympathetic to all dogs. I understood when they loved and what they loved. I felt their capacity for connection, not intellectually, but in my bones. I had built thread by thread an elaborate model of neural connection that was dog understanding, and I could operationalize it when I met new dogs and saw new dogs encounters. I had always believed in kindness to animals and in their special qualities, as well as, later, in our animal nature as humans–why do we try so hard to differentiated ourselves from the rest? But now I understood dogs in a way that I understood other people, with a depth that surpassed simple, intellectual understanding.

This experience meant for me that for all high functioning autistics, even those who do not devote themselves to developing theories of mind, have this capacity for expanding cognitive empathy and so experiencing greater depth of emotional empathy. Like social skills, empathy can be taught. It can be encouraged. And it must and it should be. When a mind is too much engaged only with itself and with objects of external interest, however fascinating, it is too easily isolated, and isolation leads to many negative outcomes: depression, anxiety, and lack of contribution. The high functioning autistic’s gifts should be made accessible as gifts to the world. And every being, autistic or not, deserves to have a quality of connection with other living creatures, whether human or canine or other forms of animal. In that connection is the multiplication of our efforts as individuals, as well as the root of our ethical sensibilities.

There is more than one research study on empathy in high functioning autistics that seems to validate that the issue with us isn’t that we lack the capacity for empathy or the ability to develop empathy–it’s that our cognitive and affective (thinking and feeling) processes run on separate tracks (as I’ve suggested is true for me, elsewhere in this blog) and we have difficulty integrating the two. In “Empathy Deficits in Asperger Syndrome” (Neurocase 8.3 2002: 245-252), S.G. Shamay-Tsoory et. al. write

“Although lack of empathy has been considered a central characteristic of Asperger syndrome…Analysis of their [adolescent male subjects’] performance on tasks assessing cognitive and affective processing did not reveal significant impairment in executive functions, nor in their ability to recognize emotions or the ability to create a mental representation of another person’s knowledge. However, both patients were unable to integrate the emotional content with mental representations and deduce the other person’s emotional state. These results suggest that impaired empathy in individuals with Asperger syndrome may be due to impaired integration of the cognitive and affective facets of the other person’s mental state.”

What may be at stake here is the people with Asperger’s have been found to have lower cognitive empathy when compared to neurotypicals, but not lower emotional empathy. This according to a very interesting study authored by Isabel Dziobeck et. al., “Dissociation of Cognitive and Emotional Empathy in Adults with Asperger Syndrome Using the Multifaceted Empathy Test” (J Autism Dev Disorder 28 2008: 464-473, available online). What does that mean? According to the study, “Empathy is a multidimensional construct consisting of cognitive (inferring mental states) and emotional (empathic concern) components.” Aspies had difficulty figuring out what people were thinking (that is, seeing multiple perspectives) when no context was provided, but when they were shown contexts in which, for example, people were experiencing obvious distress (tense interpersonal or emergency circumstances), they actually registered a stronger emotional reaction than neurotypicals. That is, they sympathetically felt greater anxiety and distress. Equally reassuring is that when Aspies were compared with neurotypicals on a scale of social desirability using the Marlowe-Crowne Social Desirability Scale (i.e.,”the tendency of individuals to think or act in ways that conform to societal norms and to distort self-reports in a favorable direction”), the study found no significant differences between the two groups.

I believe, then, that to state simply that high-functioning autistics lack empathy misses the mark through overgeneralizing what empathy is. Aspies are capable of feeling for others. We are not robots or cold-blooded killers. Often we feel too much. What we seem to have trouble doing, without additional learning and perhaps direct input from others in the moment, is understanding their perspective and how it might differ from our own. What is more, on a day to day basis, even if Aspies arrive at certain social norms of interpersonal behavior less intuitively than others, we are equally capable of behaving in ways that bring people together rather than driving them apart.

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.

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.