a parliament of owls

life with asperger's

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

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

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

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

These initial responses have all been said to me.

Didn’t they get rid of Asperger’s?

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

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

Here is how ASD is now defined:

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

Must meet criteria 1, 2, and 3:

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

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

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

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

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

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

Why are so many more people getting autism these days?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Asperger’s: Discriminating Difference

What does discrimination look like? What does it feel like? Each experience of discrimination (racism, sexism, agism) has its own inflections, based on the ways in which the perpetuating culture provides a basis for supposedly validated judgments against particular groups. So when we talk about what Asperger’s discrimination looks and feels like, we’ve got to explain it as a particular form, from the inside.

One dimension of what Asperger’s discrimination feels like is a rejection of or reaction against introverts. Recently, a quiet social movement has begun to express the positive bias in our culture toward extroverts, and a corresponding negative bias against introverts. Susan Cain‘s book Quiet: The Power of Introverts in a World that Can’t Stop Talking (2012) both crystallized the movement and catalyzed it to go further. Educational method, for example, has come to place a premium on collaboration (what Cain has elsewhere, in a NYT column, called “the rise of the new groupthink“). This pedagogical bias toward extroversion has become identified with participatory and authentic learning: students creating knowledge with other students as they work together to identify and solve topics or problems in common. Students who are adept in collaborative settings are sometimes assumed to be more advanced or mature than those who aren’t. Conversely, those who prefer to work on their own are sometimes labeled as deficient; they must be encouraged to change, even assigned to change, through social process requirements around their learning work.

Vanessa Quirk’s “In Defense of Introverts” is inspired by Cain’s work, and reflects well on how this matters to educational design, even the physical design of contemporary classroom spaces.

“The paradigm of the extrovert has become so accepted, that most people aren’t aware of its reach – or how our architecture has developed to meet its demands. Consider how the classroom – or the workplace – has changed in response. From students working autonomously in rows or employees in cubicles, there has been a huge push to create group-oriented spaces meant for collaboration, interaction, and conversation. As Sarah Conin notes in her TED Talk, ‘Our most important institutions, our schools and our workplaces, they are designed mostly for extroverts and for extroverts’ need for lots of stimulation.'”

Are all people with Asperger’s introverts? Maybe. Probably. By definition, we lead intense inward lives, obsessing about our interests, processing, processing, processing before emitting a response, often scripted. Our imaginations are extremely active and, well, compelling, and the world outside can provide sensory and social overload or, equally unsatisfying, limited cognitive stimulation. On the other hand, we’re often highly sociable and can enjoy the company of others, especially kindred spirits. We are not necessarily withdrawn from the world by predisposition, not as people might assume, given the verbal deficit and social withdrawal that are more commonly associated with Classic Autism.

But I don’t think I’m going out too far on the limb of generalization to say that it’s unlikely someone with Asperger’s will want to work in teams all the time for solving problems. We can work in teams, and we can even enjoy it in collaborative bursts, but we want our own areas of knowledge / expertise and responsibility. We want to be able to go back to our corners to reflect and puzzle. We don’t want our process of building inward systems disrupted, unless the person with whom we’re working can contribute actively and effectively to the modeling. We don’t want to get sidetracked or engage in small talk. The work is the thing, not the experience of working with other people on it. We don’t want anyone slowing us down or pulling in a different direction. Many of us are attracted to industries where these predispositions are embraced: academia, engineering, IT, writing and the arts.

There’s research evidence, much of it recent, that suggests that innovation is often the result of individual rather than group effort, and that group effort alone, when it does contribute, is not enough. Brainstorming is not the most effective method for advancing into new territory. Even open-plan offices, the kinds where people sit together with the old Dilbert cubicle walls taken down, have come under critical fire; according to Cain, 70% of American workers inhabit these. Open-plan offices are supposed to provide environments that foster collaboration. You’ve only got to lean over, roll your chair, or stand and deliver. But they’re noisy and distracting environments, too, and ones that don’t allow knowledge workers a place where they can take a thoughtful break doodling or sit with their eyes closed unobserved. They can lead to hits in productivity. For an introvert, they’re stressful, bottom line. But in American knowledge work culture, the private office is most often seen as a gift of privilege, to possess one is to possess status. To request to move to a private office can be perceived as overstepping. The desire to work alone or on one’s own is often equated with not being a team player or attempting o make one’s own decisions or cut others out of the loop. There is something subversive or suspect about the introverted worker who asserts a need for private, for quiet, for a room of one’s own.

The introverted worker, as many writers have now pointed out, sometimes encounters the bias American culture has against shy people in professional settings (to witness this bias in action, just Google how many career advice sites provide help for the shy in particular). To be shy, or reticent to express oneself in company, is often associated with being professionally passive, unable or unwilling to assert expertise or to gain necessary resources or to fail at persuading others of the value of one’s work or ideas. For men, shyness can be undesirably feminizing. For women, it can be socially rewarded, but ultimately subordinating. The shy of either gender are not management material; they do not, can not, rise to the top, whatever their brilliance, work ethic, or record of contribution. Fortunately for introverts, not all of us are shy, and fortunately for those of us with Asperger’s, our social deficits don’t render all of us shy, either. In fact, we might be perceived as too assertive or too insistent on engagement, carrying an argument until we believe we’ve proven our point or talking about a subject of interest long past its interest to others. We can often give a great, if scripted, presentation about our interests.

Although–it’s also true that some of us don’t make eye contact much if at all, and many of us drop speech or have delayed response to others. It can take us time to process before we respond, and other people can lack patience for that — or just feel it’s incredibly awkward. We can avoid social contact when it’s uncomfortable. All through my tween years, I made my friend buy things for me when we went to the store. I couldn’t stand to face the cashier. I still avoid store clerks. If they head toward me, I have to fight the urge to run. The more uncomfortable the situation, the more these behaviors manifest. Worst yet, if we claim we are introverts, we are often assumed to be shy, and so encounter the bias against shyness.

In addition to encountering biases against introversion and shyness, people with Asperger’s encounter a widespread cultural bias against nerds/geeks. U.S. culture, perhaps Western civ in general, has come a long way in accepting nerds/geeks since The Revenge of the Nerds (1984), which was perhaps just the beginning, along with Weird Science (1985), of celebrating the brainy, odd other. Nerd/geek girls are still fighting more of that good fight than boys. With the rise of computing and digital consumerism, particularly media, being nerdy or geeky has achieved its own kind of cool (we earn, we make things others like, we celebrate our difference and our sameness together — thank the Gods for the world wide web). Good looking people now regularly participate in cosplay. This is not how it was when I was growing up. When I was growing up, playing Advanced Dungeons and Dragons was for social oddballs, usually culled from the AP or gifted classes. We wore glasses. We didn’t get a lot of action. We expected to be successful academically, but not socially.

Even today, however, my son talks about the popular kids who inhabit jock culture. He’s resentful of their popularity and uncomfortable around their loud physicality. Every now and then, some hybrid soul rides the fence between worlds, but it’s not common and the world of conformist school society usually forces a choice. There’s not the kind of happy blended ending for these kids that one finds in teen series and romantic comedy. Who would choose to be a geek or nerd rather than one of the in-crowd?

I know a man who is a geek on the inside (he wanted to be an oceanographer), but was cursed with being too good looking. He married a cheerleader. They have two gorgeous kids and live in a beautifully decorated home. He works as a civil engineer and she teaches subjects at school that don’t require much intellect. He and I used to talk across the lawn outside while doing yard work. He’s tied himself for life to a vapid lifestyle (her favorite hobby is scrap booking) and a woman who can’t fulfill him mentally, but fortunately there’s more to marriage or I think he would have driven into a lake by now.

It’s just as well. Deep within nerd/geek culture is a tendency to discriminate against others who are athletic, popular, socially facile, and/or good looking. We don’t trust people like that, even though some estimates place them at 75% of the population. And maybe, in Aspie culture, the same thing can be said about Aspie reactions to neurotypicals, even though there’s more of them than us, or around 99% of the population (or more– some say we’re 1 in 500, not 1 in 100 or 1 in 88, which you’ll also see). Like all in-groups, we have defined our out-groups and we have biases against them. It’s not the better part of human nature, but it’s human and it’s natural enough.

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.