a parliament of owls

life with asperger's

Claiming Asperger’s

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

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

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

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

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

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

Co-Morbidities

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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