On the Spectrum: Autistic Adventures in a Neuro-Typical World
Where Have All the Autistic Children Gone?
Every year in the United States, thousands of children, mostly boys, are diagnosed with ASD, or Autism Spectrum Disorder. ASD is a notoriously broad category of diagnosis, encompassing a range of symptoms, some of which contradict each other. But there is a consistency in the pattern: I believe this, because I live on that spectrum.
ASD is what I like to call a “parent’s disorder,” meaning that the overwhelming majority of the conversation about what ASD is, how to respond to it, and how to live with it goes on between concerned parents and the medical community. Even the simplest perusal of the internet sites on ASD uncover a vast conversation just beneath the surface of everyday American normalcy. And let’s face it, Americans love normalcy. Even the medical term “disorder” is charged with negative connotation, even though it is supposed to be a technical term. Parents often go through a period of denial about their child’s ASD, a strong reminder of that tenuous connection between love and reality.
This is a blog about my experience on the spectrum. I want to talk about what it means to have a “disorder,” but I want to do it from a different point of view from the voices we typically hear talking about ASD these days. I’m on the spectrum, and I’m an adult with a family and a life of my own. I’m starting this blog because I don’t hear enough of us on the spectrum talking about life after all the childhood diagnoses and special ed classes. I want everyone who has ASD to know that there’s a life after this long process of medicalization and scholastic diagnostics.
I know I’m not normal. My life has been a long process of experimentation and adaptation to an NT (Neuro-Typical) world. I remember going through the arduous process of learning to read faces when I was a teenager like they were a second language. I still the miss the subtleties, especially around the mouth, and I still get distracted by the conversation across the room. I still sometimes forget to modulate my tone, and I still need quiet time by myself each day. It’s all still there, but different than when I was growing up and trying to learn how to function in an NT world.
The NT world can be hard on ASD children. There is so much pressure to fit in and keep up. As I got older, I found more latitude for my strangeness; there were more avenues for me to use what turned out to be special abilities. Autism spectrum was a “disorder” to everyone around me, but as I grew up I found that it was a special world, all to itself. I could spend hours by myself, lost in my own worlds, and they were beautiful and fascinating beyond comparison.
Parents and physicians are unavoidably on the outside looking in. What they see is a tiny fraction of what goes on in their child-patient. It’s a world without language. I am still an extremely visual thinker: there’s a world beyond language, even though I’ve spent my entire adult life trying to learn how to communicate with this NT world of language, which mixes signs with the overwhelming actuality of experience.
This blog will be a road map of where I’ve been and where I’m going. Rather than looking in, I want to speak from the position that looks outward on a strange world, a world that can be learned and navigated. I believe that many of us with ASD can learn how to function in today’s environment. A web 2.0 world is much friendlier to ASD than the older world of books and cocktail parties. This is a blog about a daily life with ASD, and I hope it’s a message in a bottle that reaches other adults, especially young adults who are wondering what adult life is like on the spectrum. There is life, and it can be good, even wonderful.
Coming Out AS
AS is a secret to the rest of the world. Even though it affects millions of Americans, autism spectrum is not a topic you can just bring up: “Thanks for inviting me over, and by the way, I may stare over your shoulder for some of the conversation and spend an extra long time in the bathroom because I find it taxing to try to guess what you are feeling.”
Today there are great support groups and understanding physicians who often do a great job of creating a powerful support network for many children with AS symptoms. This is a dramatic change over the situation when I was growing up in the 1980s. In a decade when something as devastating as HIV was being ignored by the medical and social institutions, it’s easy to imagine that ASD slipped through the cracks. There were few tools for understanding autism spectrum, and the dominant interpretation mainly consisted of blaming the mother for not being sufficiently loving. This family-oriented interpretation must have put a tremendous amount of pressure on the parents.
Thankfully, our understanding has shifted significantly. Support groups, specialized schools for AS children, therapists and research specialized with a well-honed sense for the immense complexity of the “disorder” – these developments have helped us to grasp the larger dimensions of autism. But no matter how much support AS children and their families experience, eventually this will all fall away. If you make friends outside your support network, attend school or college, start a career or get into a relationship, you will find yourself eventually facing the uncertainty as to how you can explain yourself.
Living in an NT world means always being an outsider to the social norms and expectations that control society. Still today, I find that I have to coax myself out of the house sometimes because I don’t want to give up the safe haven I have created in my little universe to face the unpredictable and often unfriendly response I get outside. Sometimes I try to explain this in strong terms like this: Being AS in the US today is similar to being a feminist in the 1960s, an out homosexual in the 1970s, or a politicized “disabled” person in the 1990s. This is a big claim, I know, and I usually find that people outside of my support network balk at this analogy. But if we think of this claim from an AS perspective, it may start to make sense. We generally look like the people around us, but we see the world entirely differently; from our hair follicles to our toes, we are not “normal,” and this means that the social institutions and assumptions are not made for us.
I constantly find myself wondering how to “come out” to people I know. The benefit is that, if they are accepting, it eases some of the tensions that inevitably develop when I do something that they experience as rude or thoughtless. The risk is that they will find it weird, or nonsensical. I have the feeling they mix the specific symptoms of AS with everything they may think about “disorders,” from epilepsy to Down Syndrome. Some will go and research AS, and come back expecting that I have every one of the symptoms, which introduces the complicated process of explaining what the spectrum is and how it sometimes works and sometimes doesn’t work as a diagnostic tool. Overwhelming, my experience in these scenarios is that I’m not normal, because normal people don’t have to explain themselves. Increasingly, if a person identifies as feminism, queer, or differently-abled, society has tools for recognizing this and making space for them.
I’d like to think that one day AS will be considered a kind of “mental queerness” that is strange and interesting and beautiful because it is such a different way of having a human mind. For now, there is a closet where the secret life of autism spectrum is kept hidden away from an NT world.
Here are some links about coming out AS that I've found useful
- The L Wire: Coming Out on the Autism Spectrum
- My Coming Out With Autism — Medium
April 2, 2013 I hadn’t planned to write about this today — it hadn’t even crossed my mind until a friend made a challen…
- Coming Out of the Closet ... About Being Autistic | Mike Elk
What I have come to realize is that every mind has a unique shape. There are two minds that are alike so labeling someone as crazy is just simply insane....
- I’m Coming Out Of The Autism Closet | Wild Sister Magazine
This post might come as a shock – it was certainly a shock to me! I’d be lying if I said I wasn’t a little nervous about writing this, but mostly I’m excited
- Dan Aykroyd – the latest celebrity to come out of the ASD closet.
The Scientific Perspective on Autism
- Wendy Chung: Autism — what we know (and what we don't know yet) - YouTube
In this calm and factual talk, geneticist Wendy Chung shares what we know about autism spectrum disorder — for example, that autism has multiple, perhaps int...
One of My Heroes
What the Heck Is an Emotion, Anyway ?
If you are reading this title, and the answer seems obvious to you, then chances are you are NT (Neuro-Typical). In other words, your mental and emotional world corresponds fairly well to the unspoken social codes guiding behavior and self-expression in your daily life. If you are on the autism spectrum like I am, then the word “emotion” evokes a strange, mostly inaccessible world. Emotions seem to govern much of the world around me, but I don’t have direct access to all of this behind-the-scenes fantasy world that so powerfully affects the people I know.
In the abstract, of course, I know what an emotion is: it’s the hidden, molten core at the center of our social world, and it’s the thing that, from my perspective, makes NT people act in crazy, unpredictable ways. It’s the driving motor behind everything from daily family life to huge business deals, and I’m on the outside looking in. This is one of the defining experiences of being an AS adult living in an NT world.
So what’s an emotion for someone like me? Over the years, I’ve tried to explain it to friends and family in number of ways. Here’s another try:
I think that most NTs experience emotions as a free-floating give-and-take, like an air that’s breathed back and forth during a conversation. Now imagine that emotions are a kind of viscous liquid instead. In this heavier atmosphere, transferring feelings is less immediate. They need time to absorb into the skin, and the communication needs to be a much more self-conscious contact.
Ants use a liquid chemical to communicate how they are doing. Sometimes I think I would prefer a world where solid touch predominates over this NT universe of airy emotions. Touching is so important to me, because I can feel my counterpart’s internal world like a solid thing rather than grasping at something intangible. If we lived in a world of touch, I would find it easier to navigate. Simple, everyday interactions like would fit better into my understanding.
Let’s take a straightforward example, like buying something at the supermarket: At the checkout, the cashier usually says, “Hi, how are you?” without meaning it, or in a tone that shows he or she doesn’t really want to know. I find this endlessly confusing. When emotions float through the air, they move by too quickly, and mix too easily with other, contradictory feelings. Now slow this world down, solidify it into a sticky mass, and you have a cosmos that flows at my speed. The cashier could touch my hand, and I would have a sense of how he or she was really feeling.
The AS cosmos consists of one feeling at a time, or at least one predominant feeling, and it doesn’t float through my body, across my fact and out into the social world, where it evanesces in the half-forgotten weather patterns of the NT world. Instead of floating airily through me, my feelings linger and circulate thickly and slowly. When I was younger, a feeling like frustration would soak through me, taking over my entire perception and leaving me completely pervaded with that sense of anguished restlessness.
Even though this may sound really unpleasant from an NT perspective, I have come to appreciate having feelings so thoroughly. I have always found romantic relationships easier to negotiate than friendships, because they are based on strong, central emotions, and touch is a more natural component of daily connection. Friendship, by contrast, depends on a lot free-flowing exchange and very little touch. I often find myself one step behind the exchange that’s supposed to oil the wheels of friendship.
Living in an AS cosmos, I envision interactions in which feelings could be articulated clearly, and one at a time. Some AS children use the strategy of picking a face out of a list to show how they are doing. This still makes sense to me. I remember as a child being amazed that the adults around me could move so fluidly from one emotion to the next. My mother would be angry at something she heard on the news, and then pick up the phone with a pleasant “Hello?” Sometimes I find myself wishing that we were all more literal, like a Vulcan world full of Spocks who speak in complete sentences and translate emotions into logical terms. But this will never be, and I would never want to make anyone give up all the strange poetry of emotions. It’s an experience I can admire from the outside, when it isn’t driving me crazy!
The Advantages of Autism, Part I
Autism is categorized as a cognitive disability. The most widely accepted term for the group of symptoms associated with autism today is ASD, or Autism Spectrum Disorder. As a high-functioning adult on the spectrum, I’ve always felt uncomfortable being classified as less capable than the “normal” or Neuro-Typical people around me.
Being told you have a disability or disorder is like being talked about in the third person. When I think of myself as having a disorder, it’s as though I stumbled onto a conversation between distant acquaintances who are making some pretty broad guesses about my thoughts and motivations. Then, the next day I find that whatever these folks have been talking about has spread to everyone around me, and suddenly a set of assumptions are floating around about who I am and what I’m like. The strangest thing about this experience is how little anyone asks me about it!
I understand that the term “disorder” is a diagnostic tool. The problem is that science uses the term as a specific point of measurement for behavior and cognitive patterning, but the culture I live in does not understand the term with this objective precision. “Disorder” seems to suggest that there’s an order out there that’s right, just as “disability” suggests that there’s a normal set of abilities that we should all have.
I don’t feel like I’m less capable than my peers, even though I know that I’m different. From my perspective, there are a number of things about being Neuro-Typical that I’m quite happy to experience differently. At the top of the list are all those complex emotions that so often lead my NT friends into endless, self-contradictory loops. As far as I can tell, this subterranean emotional world predominates for most people. They feel before they think, which makes thinking a complex process of mediation between all the crazy feelings they have and the way they wish they would behave instead.
I still have feelings, of course, but they come to me through muffled secondary paths, like the reflection of an experience rather than the experience itself. Generally, I have one feeling at a time, and they are mostly unpleasant, typically some variation on a vague sense of irritation that NTs would call frustration. As I’ve gotten older, I’ve learned to deal with my frustration by using breathing techniques and talking to myself in a calming way. Over the years, I’ve internalized these strategies by noticing what works best and consistently employing those methods. Now I’m that guy who can untie my four-year old’s knotted shoelaces or fix things around the house without cursing.
I don’t have the immediate, overwhelming world of emotions that NTs seem to have. Compared to my friends, I breezed through the social hazing of junior high and high school because I was mostly unaware of their tumultuous emotional world. I had my own challenges, to be sure, but they were mainly the result of being measured against standards that I simply couldn’t fulfill. I didn’t know how to read situations that were laden with emotional connotations, and this made me feel like I was always doing the wrong thing somehow, but the rest of the time I was free to explore my own mind.
As a child I could happily spend hours by myself, lost in my own pleasant universe. Today I am still very comfortable being by myself for long periods of time, and I find it amazing that so few NTs learn to be alone with themselves. Bookstores and websites are littered with self-help books, meditation CDs, DVDs that all try to provide something that comes completely naturally to me: comfort with the still, quiet center of life.
Without all those emotions cluttering up my mental cosmos, I have always felt free to develop what NTs sometimes call the rational side of my personality. On television, I strongly identified with characters like Spock and Data from the Star Trek series: they also seemed to have a mediated relationship to emotions that allowed them to weigh different options and make the best choice. I’ve never suffered from procrastination, for example, or the back-and-forth of emotional indecision. When I decide that something needs to be done, and simply do it. This has saved me so much unhappiness over the years, but when I try to tell my NT friends about it, they stare at me in blank incomprehension. “It’s not that simple,” they say, but for me there’s no other way of seeing the situation.
The Advantages of Autism, Part II
Autism is called a “disorder.” I’ve always wondered what it means to be “ordered” instead of “disordered.” Order suggests rules, structure, and some kind of ordinary set of qualities that is commonly shared, whether that’s in a circle of friends, a family, the neighborhood or local region, and even a nation. This emphasis on norms seems to have something to do with the way our social communities are set up. An important effect of this focus on norms is the process of exclusion. Every community relies to some degree on identifying those who don’t fit in: at the periphery of every group is a shadowy crowd composed of everyone who doesn’t quite correspond to the given order of things.
For everyone inside the circle, the order seems natural. How we talk and dress, what we eat and how we think are all shaped by these norms. It also provides a measure for judging what fits in this circle, and what doesn’t. The shadowy peripheral group outside our normative culture is defined by all the things that don’t correspond to these mostly unspoken codes. Despite all the changes we have seen in the United States in the last century, we continue to struggle with this habit of exclusion. Within the past two generations of American culture, we have had plenty of outsiders who didn’t match up with accepted cultural standards, whether they were gays, Jews, women, African Americans, or the “disabled.”
Off the Normative Grid
Being on the spectrum means being off the normative grid. For me, this has been a complicated experience, because I look pretty typical in many ways. I’m a white male, thirty-five years old, educated, and yet I’m very aware of the fact that I masquerade in public. The social norms aren’t my norms. When I walk into a room, the first thing I notice is not the people or the social point of interest, but rather some minor detail like a book or a fly buzzing against the window pane. I don’t attend to the conversation, but rather I hear the hum of electronic equipment. Unimportant gestures and slight interruptions such as a cough or a giggle distract me and send my mind off in unrelated directions. I can talk endlessly about what fascinates me, but I have a hard time with the small talk and social routine that makes up our codes of daily interaction.
Chances are, you’ve met someone like me in your lifetime. For most Americans, this kind of behavior comes across as rude or thoughtless, but this kind of behavior is actually a pattern of thought and feeling that has its own consistency and its own logic. AS seems like a disorder because it is measured against different standards, not criteria that are necessarily better or more coherent.
The Hello Test
Here’s an example: If you have an acquaintance who doesn’t always say hello when he or she sees you each day, then that person might very well be on the spectrum. I call this the “hello test.” If your neighbor launches right back into a conversation you had three days ago without a greeting, they are registering on the “hello test.” If your colleague walks by you in the hallway with a barely audible mumble of greeting, as though they were distracted, then they register on the “hello test.” From my perspective, it’s taxing to have to say the same thing each day to the same person. While saying hello is part of a social ritual that belongs to the larger communal codes of our culture, to me it seems redundant. Why would I greet you today when I already did that yesterday? Why not get into the more interesting part of the conversation right away?
When I point out to my NT (Neuro-Typical) friends that they have the habit of asking how someone is doing without really wanting to hear an answer, they often say that this is “normal” or “expected” behavior. It doesn’t matter that it doesn’t make sense: these are the rules. From an AS perspective, I would even say that habits like these come across as hurtful. When I engage in conversation, I give it my everything: I want to tell my counterpart everything that fascinates me, and I want to hear the same from them. I always enjoy conversations in which we can skip over all the chatting and dive into an exploration of what matters to us in that particular moment.
Dinosaurs and Philosophy
AS is a detail-oriented way of seeing things. The simplest topics become virtually infinite under the curious gaze of someone on the spectrum. Like so many AS boys, I was fascinated with dinosaurs when I was nine and ten. I could tell you all about the triceratops, which lived in the late Cretaceous period in what is now the North American Midwest. I had theories about what the triceratops ate, what its major predator would have been, and why it went extinct (most dinosaurs could fly in this period, giving them an advantage). Today, I gravitate from one fascination to another. I’ve learned various languages; the history of photography; all kinds of national literatures; 20th century American history; the history of philosophy; and so on. Going to college, and then getting my PhD was like having a small universe dedicated to my fascinations.
I felt very at home in the intellectual atmosphere of the various universities I’ve attended over the years. For me, the university is a magical space in which I was, for the first time in my life, praised for my ability to concentrate and problem solve. Being socially awkward was not so noteworthy, and the tendency toward self-exploration helped to mask my own uncertainty about who I was in a world that seemed so alien to my tendencies and needs. Unlike most young people, I didn’t have any role models or idols with whom I could identify when I was growing up. In college, by contrast, I met fantastical, brilliant, unkempt professors who were lost in their own fixations and could talk intriguingly for hours.
The university was a utopia for me, and it made me wonder for the first time in my life what the world would look like if it were more AS and less NT. In my next blog entry (The Advantages of Autism Part III), I’ll conduct a thought experiment in which I imagine what a world on the spectrum would look like.
A World of Expectation
Every adult learns to live with expectation. Work, relationships, family all come with unspoken codes of behavior that strongly shape the rhythm of daily life. Knowing what our partner needs without being told is an important part of a loving relationship. Our jobs are full of emotional undertones and office politics that are vital to the success of the business and your career. Whether you are dropping your kid off at school or greeting neighbors after church, everyday life if filled with social pressures to conform and act out a certain set of roles.
Or at least that’s how I would put it. As an adult on the spectrum, I don’t have access to these unspoken codes of behavior. When I was younger, I would struggle against these codes and try to talk with relatives and close friends about how dangerous and unreflective these expectations are. I would spend long hours pointing out that one of the main tasks of psychotherapy and relationship counseling is to overcome this kind of unconsidered behavior. I would harp on the socially destructive nature of group-think and the circulation of clichés embedded in social conformity.
It’s a quality of youthful rebellion to engage with these kinds of problems, but it is a quality of autism not to understand why NTs might want, and even need expectations to guide their social interactions. At 35, I’ve come to accept – still without understanding – the need for what I call the subterranean fantasy world of the Neuro-Typical perspective. Compared to social norms, my fantasy world is impoverished, something I’m especially conscious of when I play with my four-year old. When I interrupt a game that begins, “I’m a penguin and you’re a rhino,” to ask her if rhinos and penguins live on the same continent, she justifiably acts out a frustration with my literalness that I get in a more mediated form in my adult life. Why not just go along?
I love fantasy, and I often admire it in others. For many years, I studied literature, which is all about fantasy and the subtle worlds that operate at the edges of our literal use of language. Psychology teaches us that fantasy is an important way of filling in the gaps that reality all too often leaves in our understanding of why things happen and what it’s all about. I think that’s why fantasy is especially important when we are trying to read each other in a social context: there is so much going on that we can’t possibly follow it all. At that point, we are supposed to step in with our own ideas about how other people feel and what they want so that we can fill in all the blanks in the unfolding meaning underlying our time together.
Now imagine that you are missing this tool in your toolbox. The world would look like a series of partially filled in phrases waiting for you to complete them, although you have no idea what’s supposed to go into those slots. If you like logic, it’s like an irrational syllogism that everyone else knows how to complete, even though A and B don’t have any relationship to C.
The Infamous Cocktail Party
My favorite example for describing this kind of experience is the cocktail party (or just a party if you are younger), a social space that is so full of expectation that I often dread having to go. A party is a sort of game in which you practice anticipating the social dynamic and then elaborate on these undercurrents. This set of skills is highly rated in our society. Parties and similar informal gatherings are extremely important: many connections and reputations are made that define how other parts of life will go. Like my admiration for fantasy, I’ve often been impressed with people who can pick up on the chaotic flow of unarticulated thoughts and feelings to shape them in some direction. For someone on the spectrum, this kind of unruly chaos is unnerving; it’s hard to know which hints in the conversation to follow, or what a raised eyebrow means within the jumble of possible interpretations. Without a good deal of careful concentration, I find myself accidentally responding to an interaction across the room that has nothing to do with me. That need for concentration takes the fun play out of the party for me, even if I pass through without any gaffs.
The opposite of a party is a project. I love projects for two reasons: I can focus on something in a detail-oriented way, and I know what my role is supposed to be. In a party, you are not allowed to focus on something. We all know the socially awkward person who insists on talking about one thing the whole time, but for me the temptation is always there. From an AS perspective, flitting from one topic to another is a waste of time. If someone tells me they like copper jewelry or that they played soccer last Saturday, I want to hear all about it, and then talk about all the things that we can relate about these topics: Have you ever tried making jewelry? I played soccer in high school, and so on. A project allows you to focus on a topic and work on it consistently.
Many aspects of our society are project-oriented. College classes, a work-related assignment, a church mission all involve projecting in an AS friendly process of defining roles and carrying out a concentrated process of problem solving. But in our normative NT world, it is important to have unstructured time interspersed with work on projects: college parties, chatting around the watercooler at the office, greeting friends at Church, and much more. These breaks in the project stand out to me like a photonegative in which all the defining lines have been disorientingly reversed.
What Would the World Look Like Without Expectation?
Expectation and the fantasy world at play underneath the realization of our expectations are powerful factors in my life, and mostly not in a positive way. I’ve often wished I could convince everyone around me to learn to articulate what they want in clear terms, because I’ve become a very good listener in compensation for all the unspoken assumptions I miss. I have also noted over the years that unexpressed expectation is frequently a damaging factor in the lives of NTs as well, although I know my friends and family would never give up what they love about this rich imaginative world.
As an AS adult, my social map is different than an NT’s. For example, I’ve found friendship much more difficult to navigate than romantic relationships, mostly because in a relationship there is more space to articulate expectations and return to the scene of the hurt feelings when I do something oblivious. Likewise, the formal work environment has always been more comfortable than the informal social occasions around work. I love having a role in which the requirements are clearly laid out, and I get so much satisfaction from fulfilling those roles because I don’t typically have that experience in other parts of my life.
I would never wish for NTs to give up their fantasy world, but I have often had a daydream of my own, where young adults would be given classes or workshops focused on building skills for expressing their hopes, fears and desires in a way that others could understand. That way, we could chose to play the expectation game, and we could also have something clear and direct to fall back on when misinterpretation inevitably sets in – not just for people on the spectrum, but for us all.