a parliament of owls

life with asperger's

Category: Acceptance

Asperger’s is Not a Mental Disorder

Asperger’s is not a mental disorder. You’ll find our diagnosis called one frequently in the popular press. Although the autism spectrum is a diagnosis in the DSM-5, which is a “diagnostic and statistical manual for mental disorders,” to be accurate, we should refer to Asperger’s as a “neurodevelopmental condition.”

I’ll begin by unpacking why I prefer “condition” as the second term in this descriptor for Asperger’s.

First, I use the term “condition” because, as many of us and our allies have pointed out, Asperger’s embodies a developmental difference that can bring with it gifts (such as a fine eye for detail, a tendency to think outside the box, and a predisposition to rational decision making) as well as just plain divergence in our experience of both the social and physical worlds. Second, I use the term “condition” because the term connotes that perhaps it’s not entirely positive. Many of us and our allies have pointed this out as well: that to suggest Asperger’s in particular, or autism in general, are entirely positive or neutral experiences is to downplay the challenges of living with it, which for most of us is a reality and for some of us can be so profound that we require disability assistance or are driven to imagine an early way out.

Now, I’ll unpack why I prefer “neurodevelopmental” over “mental” as the first term in this descriptor for Asperger’s. When Asperger’s is referred to as a “mental” disorder, the focus is on an experience entirely in our heads, whether cognitive or affective. The reality is that autism in general, and Asperger’s in particular, is also very much an embodied experience.

In neurodevelopmental conditions, the brain and/or central nervous system diverges from a neurotypical standard of normative development. This impacts many aspects of embodiment that go beyond Asperger’s defining characteristics, such as “qualitative impairment in social interaction” (DSM-4); “restricted repetitive and stereotyped patterns of behavior, interests, and activities” (DSM-4); limited cognitive empathy and theory of mind; and weak executive functioning and central coherence. Several mental and mood disorders commonly co-occur with Asperger’s, including obsessive-compulsive disorder, generalized and social anxiety, and depression, but these are likely to have been responses to the condition rather than causes of it. The only defining trait of Asperger’s that is often associated with physical experience is sensory sensitivity, but since that often understood as (merely) perceptual, this is often implicitly taken as more of a mental than a physical concern.

Although autism research continues to search for definitive biomarkers and genetic signatures that can serve as physical indicators for autism, the field has found many physical conditions that correlate with embodiment on the spectrum. In enumerating these, I hope to give a sense of what living in an autistic body means. Not all autistics share all of these physical conditions, but these are experienced by many of us with greater frequency and with increased co-occurrence than in neurotypical populations. Except for seizures (which I have not had), and leaky gut (which I could not confirm either way), I have all of the physical conditions listed below.

  • Sensory Processing Disorder (including Auditory Processing Disorder): The brain has difficulty processing the sensory information it receives. In Auditory Processing Disorder, for example, someone may seem to have normal hearing in quiet environments but has difficulty filtering out speech or desired noises from background noise, poor memory for anything heard, and may have difficulty distinguishing between near sounds. — At school and work, I compensate for APD by always taking notes.
  • Hyper- and hypo-stimulation: Increased and decreased sensory response to stimuli (such as insensitivity to cold but increased response to heat, chemical smells, tactile sensations, or certain sounds).
  • Heightened perception: The ability to perceive better or more than is typical, such as through “super vision.” — For me, this is, unfortunately, a heightened sense of smell.
  • Slower pupil response: The pupil contracts more slowly than is typical to flashes of light. — For me, this made night driving almost impossible.
  • Larger pupil size: The last time the optometrist went to use eye drops to dilate my pupils, he remarked that he didn’t know why he bothered: My pupils are so large, they seem naturally, permanently dilated. I generally have sensitivity to light and prefer dim spaces.
  • Faster heart rate
  • Apraxia of speech: Difficulty in producing speech in the way that it is thought or planned. — I have high verbal ability but also this (which causes me to think one word and say another). I have much greater difficulty with speaking than writing in this respect.
  • Autoimmune disorders, including a higher prevalence in our families (e.g., asthma, eczema, allergies including food allergies, thyroiditis, arthritis), sometimes paired with endocrine dysregulation. — For me, this is a form of hypothyroidism: Hashimoto’s Syndrome.
  • Obesity
  • Irritable bowel syndrome
  • Leaky gut: When the intestines are “too permeable” and “leak their contents into the bloodstream.”
  • Low muscle tone and core muscle weakness (aka hypotonia, leading to trunk instability)
  • Joint hypermobility (particularly among women on the spectrum, perhaps because of estrogen levels)
  • Poor sensorimotor integration
  • Dyspraxia: A deficit in gross (clumsiness, altered gate, poor coordination and balance) and fine motor skills (e.g., handwriting difficulty).
  • Insomnia and other sleep disorders: We take an average of 11 minutes longer to fall asleep and more of us have seriously disordered sleep.
  • Seizures
  • Stimming (i.e., self-stimulation, a repetitive physical movement or vocalization that is relaxing / pleasurable, used to relieve stress and increase inward focus), with the “dark side” of stimming being self-injury (this can be as mild as excoriation). In the research, often associated with our “restricted repetitive and stereotyped patterns of behavior,” and so we come full circle to find that one of our “mental” traits is indeed linked to the physicality of our condition.








So You Say You’re Autistic

So you say you’re autistic, or have Asperger’s, or whatever. Well… You don’t look autistic. You look just like anyone else. You make eye contact. Plus, you seem to be able to hold up your end of a conversation. There doesn’t seem to be anything wrong with you, as far as I can tell. I mean, true autistics can’t talk. They hit themselves. If that’s autistic, you aren’t autistic.

Okay, okay, maybe you’re autistic in some way, but how autistic can you be, really? And what do you want me to do with that?

I mean, let’s say I accept that you’re autistic. Does that mean you expect special treatment? Like what? Am I supposed to ignore every time you’re rude to me or embarrass me in public? What about when you’re late all the time? You knew when we were supposed to be there at Y:00, but it’s like you just don’t care. You get involved in doing something on the computer and next thing I know you’ve lost all track of what you’re supposed to be doing. You’re an adult for Christ’s sake. You can get places on time.

And it’s like, you have no awareness of when you’ve driven a topic into the ground. You go on and on about X in the most excruciating detail. I mean, you don’t even realize I stopped listening 20 minutes ago. Or that other thing you do. You switch topics right in the middle of a conversation. No warning, no context, nothing. And then even if I am listening, I have no idea what you are talking about.

Yes, a car alarm just went off outside. Calm down. It’s not like the house is on fire. Stop that. Stop covering your ears. You look ridiculous. It’s just a car alarm. I don’t like that sound either, but you don’t see me covering my ears.

Back to what I was saying. Look, you have to get used to going out and talking to people. Real people, not people online. Yes, I know that takes a lot of energy for you. Not everyone’s social, but it’s important to be social, you know? You need to learn how to interact with other people and get along with them. Sure, they ignore you sometimes or act like you’re weird. I mean, you’re a little different, okay? I’m not going to lie, but so what? Everyone’s different.

Don’t try changing the topic. No, I don’t smell anything. I already took the garbage out; I told you I did. No, I did not wash out the can. I’m not going to wash it every time I take it out — nobody does that. That’s why it has a lid. Then turn the fan on. Point it away from your face if you don’t like the air hitting your face.

For crying out loud, have you ever tried living with yourself?

On Identifying as Autistic

Not long ago, I was talking about being autistic with a woman who became angry that I was identifying with a medical label. She (a non-autistic) found this dehumanizing. I explained to her that some self-identifications, such as this one, can provide a helpful way of organizing a particular understanding of oneself and others. I argued that we (all of us) should be allowed to choose our self-identifications based on which ones seem most useful (and to provide a contrast I explained that I do not much identify with being a woman or a mother because I don’t find those identifications helpful or interesting, which further unsettled her).

Today, when watching fellow autistic John Elder Robison’s Switched On book talk with his Beth Israel Deaconess neurologist (via C-SPAN), I learned that some high IQ, high functioning autistics’ brains have measurably more plasticity than average. Dr. Alvaro Pascual-Leone said that this enables them to master new domains of knowledge so quickly and well that it is akin to a “savant” ability. I had to pause the program. For many years, I have tried to explain this quality of my mind, but did not have a conceptual basis or a language for it. I immediately recognized myself in what Robison and his doctor described. I am able to immerse myself in new fields of knowledge so rapidly and thoroughly that switching industries and editing in disparate disciplines has been relatively easy for me (with the only restrictions being mathematical and spatial reasoning, where my abilities are just average). Robison said that throughout his life, this made him feel like a fraud–that he was faking his moves into new industries (classic imposter syndrome). Actually, Dr. Pascual-Leone said, Robison’s ability to understand and master new domains on his own is evidence of his gift.

And this is why being able to identify as autistic is so important for those of us who do. Because we don’t come with an owner’s manual and because most other people we encounter do not operate in the same way, we need to have a way to achieve better self-understanding. This will, in part, be through a medical construct–because there is a biological basis for our developmental differences–but it goes beyond a medical construct in describing cognitive, psychological, and social differences that follow from but are not entirely determined by it.

Responding to /Neurotribes/

I’ve just finished reading Steve Silberman’s Neurotribes. This book creates the first comprehensive history of autistics, linking us to our progression of diagnosis and treatment in the West and to other cultural groups including the disability activist movement (within autism, first dominated by parents and then taken up by ourselves) and electronics / computer / ham radio / internet and sci fi-fantasy fandoms (which gave us a home among other eccentrics — my husband and I have long called sci fi-fantasy fandom our “tribe”). The first third or so of the book hit me hard — it was difficult to get through — because of the misunderstanding and mistreatment of people on the spectrum (dehumanization, extermination, institutionalization).

The overall narrative moves from how we were defined by others, through the lens of pathology, to become defined in cooperation with others as well as by and for ourselves. Some of the writing is feel-good glib (too neatly concluded, too optimistically joined — he loves a hero narrative) and the author definitely takes sides on some of our internal controversies (sides I usually agree with, but sides nonetheless). For example, not everyone diagnosed with autism feels comfortable with its being understood as either a major filter for our perception / cognition or as the/a crucial dimension of our subjectivity / social identification.

Why does this matter? Because, by extension, not everyone diagnosed with autism wants to be part of a community of autistics or wants to belong to a cultural group identified with autism. Even those of us who do have our limits. Silberman seems to think that these are by default good things, empowering things — he has an extrovert’s bias. Community is always already positive, desirable, even to the point of nostalgic fantasies of autistics meeting in conventions and grokking one another, sleeping in public near one another, stimming together in hallways — I can’t tell you how uncomfortable these descriptions of communal experiences made me (head for the hills!).

Despite discomfort with the rather emotional and physically embodied models of community Silberman evokes, I spend hours each week giving anonymous advice online to other autistics and their loved ones and benefit from feeling a part of that community because it has helped me to understand and accept myself. At the same time, my son would rather not be part of the community, or even think of himself primarily as autistic, but pass as neurotypical because that helps him to feel unremarked and capable. Both can be decent options as long as the clinical label isn’t used to exclude, reduce, and deny (as it has too often in the past and sometimes continues to do in the present).

But Silberman also champions the cause of neurodiversity and its value to society. Although that is often reduced to its practical benefits (ala Temple Grandin), maybe that is a start to others accepting that humanity benefits when we broaden our sense of who matters (all of us) and how we ought to treat them (with kindness and inclusion). For this and for the comprehensive history of autistics told here for the first time, this is truly a valuable book, one that expands our potential for understanding difference along a different vector than we usually think of and are more familiar with as a general society or as academics (race, gender, class, sexuality, religion, etc.).

Reading Aspies through a Conventional Lens

“All human beings look out at the world through eye glasses imposed upon them by their own neurology. Then, they assign meaning to the behavior of others according to the meaning that behavior would have were they themselves engaged in it. Most times the guess is correct, but sometimes – like when neurotypicals (NTs) are looking at autistics – the guess can be wrong.” Judy Endow

Often wrong, yes. Tell it like it is, Judy Endow. My workplace held a training session on diversity and inclusion today, conducted by a very well informed and personable national consultant, David Bowman of Boston. I asked him how to deal with this kind of misinterpretation, when people interpret the behavior of an autistic along convention lines.

I told him that I know from what others say later that on first meeting I can come off as standoffish (I’m inwardly focused, concentrate intensely, dislike interruption, feel uncomfortable with eye contact, run on either a logical / thinking or social / emotional track and at the office often opt for the former and sometimes withdraw from overwhelming sensory triggers like strong perfume or a loud voice). They can interpret this as coldness or arrogance, neither of which is in my character.

I told him I have tried to help people interpret me correctly by disclosing my autism but found that even most educated people don’t know what that means, which leads to more and sometimes worse misinterpretation (a colleague recently supposed that I don’t drive because I have trouble focusing — Aspies are hyperfocused when engaged in an activity that interests them, and survival in the moment is in everyone’s interest — it’s the sensory issues that are stressful).

He apologized that he didn’t have any help for me, saying this was beyond his expertise. However, he added what he said what he hoped was a compliment — that I didn’t seem autistic or in any way socially inappropriate to him — I interacted positively with others, and he’d been watching me carefully since I asked challenging questions. He’d guessed I was one of the PhDs he’d known would be there (but hadn’t wanted named so that didn’t bias him), because I’d made him think, but that was it. I have to say, I was relieved.

Gender Dysphoria and Bodily Estrangement

A small study based in a gender dysphoria clinic has just found that “almost a quarter of kids with gender dysphoria” are “likely to have Asperger’s.” At least one other study has found that people with Aspergers have higher than baseline rates of the same. Few people who are wired conventionally are aware of how much that wiring affects a basic sense of self, such as one’s relationship to the body. For me, the body is an alien entity, a vehicle that carries my consciousness even as it synthesizes and synergizes its production. Without a neurologically based rewards system for social thinking or feeling, I also have no additional inclination to conform to received views about the body or how I should relate to it. Therefore, my sense of gender and sexuality is based on my partially independently formed concept of these rather than the vehicle or what I’ve taken in about it from others directly or via media.

From a very early age, I did not identify as female, and I often feel a negative response to social conventions that attempt to identify me as one (such as the label “Mrs” or being called a “mother,” when I am only my son’s mother and my marital state does not define me any more than it does a “Mr.”). I am also equally attracted to males and females and have been for as long as I can remember. But physical touch, presence, and relations are unimportant to me, and in some ways undesirable unless I already have significant emotional intimacy with the other person. I find that other Aspies vary to the degree to which they would say the same, but there’s a tendency toward all of this in us that I believe is shared.

I remember with what joy of recognition I responded to a question on one of the extensive diagnostic inventories I took during my medical diagnosis for autism. It asked something about whether I was sometimes uncomfortable with having arms because I didn’t know how to position them or what to do with them. I had never told that to anyone and couldn’t believe anyone could imagine the same enough to ask another if that were the case.

One artist who does express this sense of bodily estrangement is David Byrne, also a self-described Aspie. If you are interested in this, read his lyrics to “Glass, Concrete, and Stone.” Here’s a taste:

Skin that covers me from head to toe
Except a couple tiny holes and openings
Where the city’s blowin’ in and out
And this is what it’s all about, delightfully

Everything’s possible when you’re an animal
Not inconceivable, how things can change, I know

‪#‎aspergers‬ ‪#‎autism‬ ‪#‎genderdysphoria‬

They’ll Slap a Label on Anything: On Teachers’ Responses to Autism in the Mainstream Classroom

I recently attended a conference for teachers in my field. Walking to a session with a teacher I’d just met, we were talking about some of the common difficulties in the classroom. She mentioned teaching to special needs students in the mainstream classroom and began to elaborate. There are so many kids diagnosed with ADHD these days, she said. And then there’s autism. There’s more kids they say are autistic now. I don’t even know what that means. They’ll slap a label on anything.

She did not know that she was talking with an autistic who has a freshman son in high school also diagnosed with autism. I did not enlighten her. I gave her some information about recent research that suggests there aren’t more autistics but more people who would have received other disability diagnoses being placed on a broader spectrum (see, for example, here with a popular summary in context here). This is, I explained, in an effort to refine our clinical definitions and associated interventions, so that we can describe developmental conditions more accurately and provide better help to those who have them. She didn’t respond, and we had arrived at our destination, so I didn’t know whether this was having much effect. I hope she will reflect on it later.

This teacher was obviously someone who was investing in her own professional learning by attending the conference, and she seemed well meaning. However, she is also a veteran teacher who must have had many autistic students in her classroom over the years. I have to wonder how much harm she has done by dismissing their diagnoses as a fad. And I had to reflect that maybe her discomfort wasn’t in accommodating ADHD or autistic students so much as being asked to adapt her approach in the classroom to individual students. The best teachers I’ve know have always done that as a matter of course, as much as possible and practical.

Over the years, in helping with my son’s educational progress, I’ve only met one teacher who explicitly rejected autism as a valid diagnosis: his fifth grade teacher, Mrs. R. Although she didn’t ever tell us so directly, it became apparent that she felt he was some kind of repugnant, anti-social creature. His abnormal social behaviors disgusted her. She called in the school psychologist to assess him, and convinced her that he was also anti-social. Neither of their descriptions of our son matched our understanding of him or that of other teachers from his earliest years to the present. I understood this fifth-grade teacher was highly socially conventional. When our son did not internalize or follow social cues, she became alarmed. He would get up during work and pace across the room once or twice before resuming his labors. If someone bumped into him by accident, he reacted with upset. Instead of interpreting his behavior as an absence of social awareness, or as a need to deal with sensory issues, she interpreted his behavior as deviance and defiance. Our mild, cooperative, quirky, gentle, funny child is neither of these. Once we explained this to the principal, who knew our son better, she intervened with the teacher, and the rest of the school year went better. It didn’t help that this teacher’s son was in the same grade and same band class as our son, and had bullied him from the first day of the school year. I could not help but assume that her child had internalized her rigid adherence to certain social norms.

Having taught college for twenty years, my heart goes out to teachers. Teachers in public schools teach too many classes filled with too many students. We can’t expect them to understand every diagnosis their students have or to be able to adapt their teaching style, method, or materials to every student difference in the regular classroom. I’ve been impressed over the years with the commitment and care of our son’s teachers. They have all done their best in difficult circumstances, even the fifth-grade teacher who misunderstood our son. She was trying to get him help for what she saw as a disturbing deviation from the norm, and she was trying to create a positive classroom atmosphere for her other students. As our son’s advocate, I had to press for a different response and I had to seek to educate an educator, which is never a comfortable position for a parent-advocate. I’ve had other moments when I’ve had to educate teachers about autism. Despite their experience with many children on the spectrum over the years, even the most well-meaning teachers often haven’t had time to focus or specialize in kids on the spectrum. They don’t understand it from the inside, in depth, although they are sometimes sure they get it. Their surety about their knowledge of autism can get in the way of working with individual kids on the spectrum even when they do accept autism as a valid diagnosis.

In the eighth grade, with the advent of Common Core State Standards in our state, our son’s math teacher became committed to collaborative learning in general and to cooperative learning groups in particular. Mrs. C became so committed that she designed her classroom around learning groups every day, all day, for two math periods each day. Individual desks were replaced with group tables. The teacher walked the room the whole period, but attempted only to facilitate as needed; the kids ran the show.

Cooperative learning groups are the kind most often recommended for kids on the spectrum when they do work together. They feature structured roles, with each student assigned a different part to play, and specific goals. This helps kids on the spectrum know what is expected of them socially and provides some scaffolding for interacting with peers. However, the amount of social interaction was far too much for our son. He had no time for working quietly on his own, no time away from social demands, and little support for interpersonal conflicts that arose in his groups. When the teacher was called over to help resolve these, she would assure students they could work it out on their own. The kinds of interpersonal conflicts my son encountered are typical of group work among students in the eighth grade: other students who won’t stay focused on work, who are sure they are right and the rest of the group is wrong, who are in a bad mood that day, and so on. Among the range of social deficits kids on the spectrum have, conflict resolution is one of the most prevalent and the likeliest to produce significant stress. The teacher attempted to help our son by switching up his groups and eventually allowing him to have a friend in his group. None of these solutions, though reasonable, were sufficient long term, because the interaction was unceasing and intensive. He was encountering increased group work in other classes as well as part of the Common Core approach, which added to his overwhelm, but math class was the most relentless.

Two-thirds of the way through the school year, our gifted, motivated son became so distraught that he began to exhibit school refusal behavior. He had fantasies about getting up and walking out of the classroom and of leaving the school and refusing to come back. This “wandering” behavior is typical of autistics, especially those from their tweens through early adulthood. It is a maladaptive response to stress that can endanger the individual, but it is a response that helps the autistic, who often has difficulty identifying or describing emotions in the moment, to distance him or herself from real ongoing harm. Our son is a homebody and anything but a risk-taker. I understood his talking about this as a serious symptom of something going very wrong. He was becoming increasingly depressed from having to go back to school each day and was desperate to escape. If he and I had not had such a close connection, he might have just done it instead of telling me about it.

Mrs. C was not only a veteran teacher but also a highly accomplished one. She was a master teacher. She was also certain that collaborative learning was the best learning method for all students and that she understood what students on the spectrum needed. She herself, she said, had autistic traits, and she had a nephew on the spectrum. Yet, what she was doing in her classroom was harmful or our son, and she could neither see it nor respond to it appropriately. We were clear all along that we wanted our son to be challenged. However, challenge also needs to come with reasonable accommodations and supports. These accommodations and supports sometimes fall away as the child develops, and sometimes need to be added as the learning environment and expectations change. Educators must always remain open to learning about the nuances of disabilities in learning, and especially to assessing how new methods that benefit most students may introduce new challenges for some.

In the case of our son’s math class, we had to call a new 504 meeting and adjust his plan so that he has the ability to opt out of any group work. I brought a quantity of research about group learning and autism (it is not a recommended default method and needs to be handled with awareness and care). His math teacher fought this bitterly, and even later, following the new plan, pressed him passive aggressively in the classroom to continue group work. We asked the principal to intervene, and she did, asking the teacher to leave our son to his individual work when he chose that. When the pressure was off, he often chose on his own to participate in group work. Being able to withdraw when absolutely necessary saved the school year for him. I have come across Mrs. C since, as recently as the homecoming parade. She refused to look at me. I suspect she feels we seized control of her classroom (at least one chair of it) and overrode her professional expertise (albeit in this single matter). I am certain we saved our son from further harm. He has told us if we had not intervened on his behalf, his trust in us would have been undermined, and I believe him.

The best teachers our son has worked with over the years have been those who accept a range of differences among their students, even when they don’t have a label for these differences or receive notice of a recommended intervention to which they are asked to adhere. From our son’s earliest grades in school, he has had teachers who recognized when he was about to have a meltdown and practiced a brushing technique to sooth him, or who saw he needed to sit near the front of the room away from social distractions, or who learned that he liked to share information with others and gave him an ability to present what he knew while excusing him from the stress of wearing a costume or talking about his feelings. These teachers seem always to find the ability in our son, to find ways to elicit that while also supporting his discomfort with group expressions or personal ones. They have understood that being uncomfortable or unable is not defiance or deviance, but difference, and they have been willing to accept and work with that difference toward learning goals. These teachers have shown generosity and humanity in their practice, when they have known and understood how to work with the label and even when they haven’t. The label isn’t what really matters, anyway–it’s the teacher responding to each student according to his or her needs, being willing and able to assess, reflect, and adjust. These are teachers who do not mistake fairness with sameness, and who have developed the capacity and the patience to make a practical difference.

Social Assumptions: On Common Ways Aspies are (Mis)Interpreted

One of the core deficits Aspies have is a weak theory of mind, also referred to as mindblindness. That is, because we have a limited social imagination, we often don’t understand what others are thinking or feeling. Not only do we not understand it, but we also often don’t pause to imagine it at all. It doesn’t occur to us because we are dealing with the intensity of our own inner worlds. Our patterns of thought tend to be detailed, complex, and focused. When we aren’t focused on these, we’re trying to filter out invasive sensory inputs. Since our brains aren’t built to filter these, and since we tend to feel them more strongly, this can take a lot of energy. Socializing with others also takes a lot of energy. We have to do it consciously and self-consciously, so we often don’t attend to it — and this is not only because we’d rather put our energy elsewhere, but because we don’t feel a sense of reward when we do due to how are brains are wired. However much humans have evolved, we remain animals who are motivated largely by the stimulation of reward centers in our brains.

Although this Aspie deficit is often discussed, what isn’t often talked about is the deficit that many neurotypical, or naturally social, people have in understanding us. Too often, they make the mistake of ascribing conventional social and psychological explanations to our behaviors and utterances. These assumptions often directly contradict the fact that Aspies are not inherently socially motivated. I will give a few examples to demonstrate and hopefully enlighten.

Instance 1: Attention Seeking: Recently, a self-described NT male wrote to the main Aspie subreddit, which I follow, to complain about an Aspie woman who has stalked him for years. She posts about their “relationship” in social media and spends time analyzing him and his behaviors there. He believes she does this out of a desire for others’ attention. This seems a misguided notion to me. Aspies tend not to be motivated by social interest. We are not attention seekers in that way.

So why is she posting to social media? It is much more likely that this guy and her relationship with him have become a fixed fantasy, which is rooted in our tendency to obsess about our interests. She does have strong feelings about him and her “relationship” with him in the context of this fantasy. By asserting this fantasy in a social space, it becomes more real to her.

She may also be seeking agreement with her point of view. We Aspies love proving that our view of a system is accurate. It is not likely that she herself wants to be the center of attention (an alpha female or diva) or to promote a particular status for herself as an important person in the social world (in this case, a female victim wronged by a man). This is common in the behavior of some NT users of social media.

Usually, aspies are drawn to social media or other social venues for sharing interests to promote the interest rather than ourselves, although I acknowledge that through identifying with the interest we may be gaining the same kind of emotional satisfaction that a neurotypical might gain through others attending to them directly. As another example, I primarily use my own Twitter to share articles that I believe are interesting and have value. I share them because I want others to be interested in them, too. I want my interests to rise in importance in the world so that others follow them, fund / support them, and contribute to our knowledge about them. I do not share these on Twitter to promote myself or to alter the opinion others have of me. That could be an effect of my behavior, but it would not be an intended one.

Aspies are not usually interested in advancing ourselves ahead of others because social status, and social roles in general, do not produce much feeling in us. To feel that, we would require a social imagination and an attachment to it. If and when we are arrogant, it is because we value competence and knowledge, and our ability to exhibit both; we sometimes devalue others who can’t keep up (immature of us, but there you are).

If Aspies do want a particular social identity to stick, it is that of expert in our areas of interest. We want and expect our expertise to be respected. When others don’t respect our expertise, the feeling is often one of irritation because the exchange of knowledge (often felt as a flow of information) is interrupted. We have to take the time to establish how we know what we know so that we can focus on the interest again rather than the social context around it. To us, this seems a waste of time; it only produces frustration.

Instance 2:  Attachments: When my son was in kindergarten, his well-meaning teacher harmed him without realizing it. He had a strong attachment to his best friend, a girl who was also in his class. This teacher was concerned that they played together almost exclusively. They did not reject other children from their play, but they didn’t actively include them or attend to them, either. The teacher finally reacted to this concern when their bond upset another little boy in class, who was also my son’s playmate but did not get along with the girl (he was jealous of her relationship with my son). The boy’s parents were going through a divorce, so he was especially needy at the time. The teacher wanted my son to help the boy deal with his emotional needs through being extra attentive to him. She began to regulate when my son could play with his best friend, so that the time they spent together was limited, and sought to stop them from any play in which others were not present. This led my son, when he understood what was happening, to feel that he was not allowed to spend time with his most important daily person, which took away an emotional resource, and that something was wrong with the way he felt comfortable relating to others, which reinforced the feeling of difference he had already begun to develop.

What my son’s teacher had failed to understand is how Aspies bond emotionally with others. We tend to develop bonds with a very few other people and those attachments run deep. In Aspie culture, we often refer to them as “our people.” If we lose one of our people to death or a breakdown in the relationship, we can experience profound grief. We meet almost all of our emotional needs through pursuing our interests, but what remains we meet through “our people,” and not through relating to other people or to people in general. We have difficulty developing such deep, intimate relationships because of the energy they take (we are rarely willing to expend it), the barrier in emotional understanding with most people (they don’t get us and we don’t get them), and the need to compromise on a regular basis (most of us have difficulty wanting to meet the needs of others, but others have trouble understanding that we have certain needs on which we are unable to compromise without harming ourselves, even though these can have to do with things that seem unimportant to others).  There may also be some kind of chemistry, and not necessarily a physical one, that enables us to find the person so interesting that they become one of our interests; it doesn’t always happen when and as it seems it should. We can experience loneliness, but that is when we have an absence of this kind of relationship in our lives.

To return to the opening example in Instance 1, sometimes, those people to whom we become intensely attached do not reciprocate. In cases of Aspie dysfunction, we don’t require this reciprocation. This is why Aspie have some elevated tendency to exhibit stalking behaviors. Since we live in our heads, we’re able to attach to the fantasy to the detriment of a relationship with the actual person who has inspired it. It’s to the detriment of ourselves, too, since this kind of social naivete can lead to being deceived, neglected, and abused. Most Aspies can probably think of a relationship in our lives in which their intensity of attachment was not reciprocated, even if it did not lead to actual stalking. We can probably also all think of relationships in which others have been much more attached to us than we were to them. Although neurotypicals also experience these things, they tend to be more common with us and more pronounced.

One thing that disturbs neurotypicals in getting to know us better is that we sometimes do not establish these kinds of bonds with the people to whom we are supposed to have them, given cultural norms (parents or siblings, peers with whom we hang out, people with whom we’ve worked for many years). For example, I have rarely experienced the sensation of missing any other person over the course of my life; I am able to leave a school, workplace, or group, and many individual relationships without that feeling either soon after or years later. That may seem a deficit. However, with the very few people to whom I have bonded, this is different. I prefer to interact with them daily. The world is not the same without them (and they may include other animals — such as a dog or cat — rather than only humans). My feeling of missing them does not diminish over time.

That said, for some years now, I have used Facebook as a way of connecting people from past times and places. I have attempted to change, to take an interest in people with whom I have enjoyed interacting in the past. I have found that this is surprisingly pleasurable, so perhaps we are able to grow in this area of emotional and social reciprocity as we are in others, such as in advancing our capabilities in theory of mind through observation and study (as I have — an important motivation for my studies of psychology and literature).

Instance 3: Group Bonding: When I joined the student counseling center staff at a major university (as a communications and IT manager), I felt a sense of difference from the social norm particularly strongly, because that work environment, as part of the Student Affairs division, had a culture in which a kind of student pep atmosphere dominated. We were asked to wear matching shirts for certain days and events. We were expected to be highly social, to want to participate in group activities, and to identify with the team. I could not produce those feelings. What is more, the emotional bond with the team was all the more important because of the special stresses of that work. Although the clinicians were trained professionals, the daily wear of clients’ emotions and the occasional wrenching crisis (a student suicide, criminal victimization, threat to self or others, or arrest) had an emotional impact. Without a strong sense of team, and of the social norms in expression and behavior that went with that team, trust was compromised and additional stress was introduced into the organization’s working atmosphere.

Although this was an unusual organizational experience, it’s nevertheless common that when I enter into a group experience, I often find an expectation that members will bond to one another through forming a shared bond to the group. This is an alien emotion; I am unable to feel it. My discomfort at the counseling center thus had a basis in Aspie “nature.”  As a rule, we are not joiners. We can have a strong sense of duty toward causes to which we belong: a workplace, a social mission, a profession, and we can emotionally bond with that idea of service to something larger than ourselves. We often identify with our interests and enjoy interacting with a community of people who share our interests, but our focus tends to be on the interest rather than the people themselves. One Aspie guide I have on hand describes us as “thing people” rather than “people people.” It’s reductive, and I prefer the term “systems people,” but not inaccurate. We tend to rate higher than neurotypicals on indexes of altruism and idealism and to value reason over emotion.

At the university counseling center, my sense of attachment was to the mission of providing counseling services and outreach to university students. I felt a passion to ensure that their development was supported so that they could pursue their educational goals and go on to live happy, fulfilling lives. This sense of mission was personally important to me (psychology and higher education are two of my interests), and I identified with it. I had a sense of duty toward students, since I continue to identify with the profession of college teaching, even though I rarely teach these days. I felt something for it and about it. But I could not feel something directly for the staff as a social group to which I belonged. I could admire individuals and enjoy interacting with them around our shared interests, but the group as a whole produced no fellow feeling. When this was expected of me, I felt uncomfortable, as if it both threatened to swallow me and spit me out.

This is not unique to me. Aspies tend to hold social groups at a distance, and the more negatively impacted or less self-aware among us may come to believe that social groups are the ones holding us at a distance. We are most comfortable either in a leadership position or at the fringe. The middle is fraught with energy-draining embarrassment and confusion. The more an organization promotes conformity to a social behavior or dynamic, the more we begin looking for ways to opt out. This is not anti-social in Aspies, as it would be in neurotypicals; it is better described as asocial. However, this response and its manifestation are often (mis)understood by neurotypicals as antisocial.

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.