a parliament of owls

life with asperger's

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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.

 

 

 

 

 

 

7 Things the Media Gets Wrong on Asperger’s

Media coverage of Asperger’s sometimes gets it wrong. Here’s what:

Asperger’s is a “mental illness.” Just no. Asperger’s is a developmental difference that can lead to certain disabilities. When a commentator chooses to define us by our disability, we get labeled with a “neurological disorder,” which is still not quite the same as a mental illness. Our brains have developed differently, and some of those differences may present a challenge, but these differences are not necessarily dysfunctional and they are not the result of disease. That said, there is no shame in mental illness, and Aspies can exhibit cognitive and behavioral differences that respond to psychological and psychiatric treatments.

Asperger’s can be “overcome” or “cured.” Also no. Aspies can learn to compensate for deficits or challenges due to their developmental difference, but it is a lifelong difference. Recently, John Elder Robison’s account (Look Me in the Eye) of having participated in a neurological experiment (transcranial magnetic stimulation) that improved his cognitive empathy is making the rounds (the new book is Switched On). He claims to have had the experience, however temporarily, of being to feel and perceive things he was unable to feel and perceive before. He doesn’t claim a cure himself–just a transformation that is, so far as we know, unique to him, but others writing about the book have made the claim. To my view, the jury is still out on whether the experience will generalize to our population. And, even if that were possible, there are many within our community who wouldn’t choose to change who they are at such a fundamental level.

Aspies don’t mind doing “boring” and “repetitive tasks.” Got something tedious? Hire an Aspie. Just no. Aspies are keen on identifying, tracing, and completing patterns. We are systems thinkers. Does that mean we are able to tolerate boredom better than others? In fact, we tolerate boredom less well (one of our defining traits is a passionate devotion to “special interests”), but what bores you may not be the same as what bores us.

Aspies are “good with numbers and technology.” Many efforts to hire Aspies into the workforce currently focus on IT positions. This might work for some Aspies, but will it work for all of us?  Still no. Some Aspies are good with numbers and some are good with tech. However, one of the defining traits of Aspies is highly differentiated areas of ability and the areas of ability may differ. There are some Aspies who are actually more verbally than mathematically gifted, and one study has found that we have higher abilities than normal in “fluid problem-solving” (aka “abstract reasoning ability”).

Aspies “cannot tell a lie.” Just no. Aspies can learn to lie just like any other human being, especially in order to avoid getting into trouble. Most of us strongly prefer not to lie, and to our own disadvantage resist lying even in small ways, for reasons we don’t fully understand. We even have a tendency to share disadvantageous truths about ourselves or anything. I believe we tend to be straight shooters and rule followers because the system of social reality is set up that way, and we follow systems, preferring predictability, order, and even perfection. We also tend to be bad liars and we dislike having to conform to the social norms and expectations that would induce someone to lie to begin with.

Aspies are disproportionately mass murderers. Definitely no. Aspies don’t tend toward violence any more than other human beings. If you counted up all the mass murders historically or presently, most of them would not be Aspies. However, because we have the antisocial loner as a popular figure (not all Aspies are antisocial loners) for mass murderers (especially school shooters), the media has come to associate Asperger’s with these tragedies, even speculating on whether a shooter was thought to have or might have had Asperger’s. Even in cases where a shooter is a confirmed Aspie, at least one expert analysis claims that it is compounding psychopathology and not developmental difference alone that is probably an underlying cause in most cases. Perpetuating this association and speculating on it as a cause of violence is irresponsible. (Click here for a good opinion piece on this topic by Andrew Solomon.)

Aspies “lack empathy.” Finally, no. When people say that Aspies lack empathy, what they usually mean is that we are unable to feel for others. However, studies have shown that Aspies have a normal or even pronounced ability to feel for others. Many in our community feel especially close to animals. Aspies have a deficit not in affective empathy but in cognitive empathy. That is, we have difficulty imagining what others are thinking or feeling. We have weak “theory of mind.” Couple our weak theory of mind with a tendency to just say whatever we are thinking without social filters or to not do what is expected around a social occasion or as a social response to another’s expression of feeling, and we can seem insensitive, odd, or cold. However, once an Aspie is aware of what someone else is feeling and is able to understand why he or she is feeling that way, empathy is as likely to follow as it is for anyone not on the spectrum.

 

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 Asperger’s Closet: On Coming Out

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

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

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

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

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

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

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

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

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

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

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

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

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

Asperger’s: The “Invisible” Disability

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

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

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

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

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

Bear with me through this apparently unrelated for instance.

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

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

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

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

Claiming Asperger’s

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

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

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

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

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

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

Co-Morbidities

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

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

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

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

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

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

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

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

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