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What the Experts Can’t Tell Us About Autism

Updated on September 30, 2014

In the vast clinical conversation about autism, the authoritative guide is the Diagnostic and Statistical Manual of Mental Disorders (abbreviated DSM). In my conversations with students, clinicians and parents of autistic children, it seems to be the go-to reference. The DSM diagnostic criteria for autism is prominently featured on such well known websites as Autism Speaks.

As an adult on the spectrum, I had never encountered the DSM or sat down and read through its definition of autism. Until I started talking with others about autism, I hadn’t seen the point, because AS was something I lived with rather than read about. If you live on the African Savanna, you don’t need to look up a definition of the baobab tree, unless you start getting curious about what the explorers and colonists are doing with it. Living in an environment is always qualitatively different from visiting, no matter how well intentioned those visitors are. In the case of the DSM, it’s hard to tell what the intentions are, exactly.

Inspired by all the faith and goodwill people have in the DSM, I recently did sit down to read through the section on autism. I immediately saw that the categories for diagnosing autism were well thought out and scientifically presented, and yet I didn’t recognize myself in them. This is not because the diagnostic categories were somehow wrong. I want to be clear that I don’t have any issues with a scientific and clinical approach to autism, or any topic for that matter. But as a human being who lives life outside the normative range of experience, I suddenly felt like a bug under a microscope, and what I saw reflected back to me was as cold and unloving as a metal dissection table.

My Bright World

No Neuro-Typical (NT) person would like to see themselves described with language like this. The DSM persistently uses extremely negative terms: “deficit,” “impairment,” “difficulty,” “restricted,” “lack.” If I could change one thing about the NT world I live in, it would be the use of this negative language to describe the difference that is me. As a 35 year old adult living with AS, I am well aware that I’m different, but I have never experienced those differences as a lack or deficit. My world is rich, although internal; my cosmos is full of wonder, although I have to work harder than others to express it.

When I was a child, I spent long hours by myself, sometimes going whole days without saying a word. No clinician can have any idea of the beautiful, patterned, brightly lit circle I inhabited, because they are on the outside looking in. From my perspective, the persistent need for the NT world to label, classify and cordon off is actually an emotional response, not an intellectual one. If you grow up in and through a chaotic welter of sense impressions as I did, you start life by understanding how messy and confused this universe is. Even as an adult who has mostly adapted to the NT world, I carry this sense of fascination and humility with me every moment. By contrast, I see the Neuro-Typical response to this complexity as an emotional desire to dominate, to name, and to use that name to control things that are difficult to understand. The rise of the study of autism over the past few decades seems to be overwhelmingly oriented toward this naming process, which colonizes difference and cuts out anything that doesn’t fit into the procrustean bed of these rigid definitions.

The Ability to Compensate

Defining a person’s autism by running down a checklist makes that person into a two-dimensional object of study, rather than a complex human being with a different set of experiences. Take, for example, Category A of the DSM’s diagnostic criteria: “Persistent difficulties in the social use of verbal and nonverbal communication”. There is no doubt that this is correct, but it only looks at one side of the phenomenon. I have always had a great deal of trouble reading facial expressions and tone modulations, but I have found that my intense intellectual curiosity about a topic can override these challenges enough to get me through these conversations, and sometimes into very good relationships with NT people based on what I can do, rather than my shortcomings.

Since I was a teenager, I have been able to “compensate” for situations that I find unnatural like social chitchat by bringing other skills to bear on a situation. That means that more than one thing is going on for me at once: I don’t just have a “deficit,” but also a strength, and the two are intimately related for me. This is significant, because diagnostic criteria only identify one problem at a time, whereas I experience the world globally, with all kinds of skills as well as the “difficulties” the DSM is so keen on. When I can plug my insatiable curiosity into the interests of others, those NTs become a little bit AS with me (if I can put it that way), dropping many of the inhibiting social cues to get down to the direct exchange of ideas where I feel more at home. When NTs step into my world, these shared moments have a special non-judgmental innocence, a nerdiness of pure enthusiasm that I mostly live in, and that I love sharing with people who generally seem overburdened with worries about how other people perceive them and all the subterranean codes of communication that I am happily unaware of.

The Hubris of Diagnosis

I could go down the DSM list of criteria and point out how each checkmark only tells half the story, but my point is larger than this kind of quibbling about definitional language. The issue for me is rather the hubris of the colonizing attitude toward difference, the frankly arrogant assumption that autism is a disease with the marks of pathology. In my more defensive moods, I like to point out all the things I can do that NTs can’t, and how dangerous and destructive an emotional outlook on the world can be. It is frustrating to live in a culture that tells you that you have a problem when, as a society, we can’t figure out how to talk about global warming, population control, or religious fundamentalism because our cultural norms are dominated by emotion rather than curiosity about causal sequences and pattern recognition. But at the end of the day, I love this crazy NT world with all my heart, and I see its strengths as well as its shortcomings. I often find myself wishing for the same courtesy back, but unfortunately it is the privilege of a dominant culture not to have to reflect on itself, and for me the DSM is a prime example of this attitude.

I’m sure there are many who will not like what I have to say, including well-meaning parents of AS children. I want to acknowledge that the DSM has its place in the AS experience: I know from personal experience that is important to diagnose AS early on and begin a special form of education. But, with the help of those programs, these AS children will grow up to be AS adults, and the majority of them will be able to pass to some degree in NT society. I think it’s time we asked what it might feel like to be on the spectrum, and to see yourself described in purely negative terms that define you by your weaknesses, to feel like a bug under the microscope rather than a human being with all the intensity and complexity that comes with sentience. In point of fact, the DSM could describe all the same criteria of autism without the language of pathology, but it chooses not to because it relies on social norms that see difference as the source of problems rather than an opening onto other ways of being human.

Coming Out AS

Difference is a deeply rooted concept in NT culture. From my perspective, it is itself a kind of disease, a tendency to ignore the shortcomings of your in-group in the emotionally driven desire to locate the deficits of another group. But no one is fully able, a perfect body with a perfect mind, no matter how much NT culture idolizes the notion of normalcy. We all compensate, but in normative culture we don’t describe our need for automobiles as a “disability” to run 60 miles per hour, although that’s what it essentially is. Similarly, we don’t think of “normal” children as being born with the “deficit” in reading or thinking logically. Instead, year after year we patiently teach children what they need to know in ways that they understand. It just so happens that children on the spectrum need different, and in some cases more education. I found the NT classroom extremely challenging all the way up to high school because (to put it mildly) it was a space that was not oriented toward my way of understanding. In high school, I finally discovered that I could learn for myself, and I turned this autodidactic ability into a series of obsessive fascinations that carried me all the way into college, where a “high functioning” AS person can actually feel more at home. Teachers didn’t mind when I talked to them without making eye contact, because they wanted to hear my ideas, and students were going through the same process of intensive self-exploration that had become my norm.

Here is another example: I’ve been going to therapy – both individual and group – for a very long time now. I still find it surprising how compatible an AS perspective is with a therapeutic (as opposed to clinical) environment. In therapy, one is expected to do many of the things that come naturally to me: introspection, an emphasis on articulation rather than unspoken codes or behaviors, the use of intellection to explore feeling, the absence of judgment and an openness to difference, a commitment to changing self-contradictory behaviors, and so on. Because of this compatibility, the therapy room has been my tranquil harbor for years. Now for the first time I am coming out, exploring a process of engaging more directly with an NT world on my own terms, rather than working so hard at passing or masquerading as something I’m not. I find it intimidating, because I am discovering that there are a lot of negative assumptions about what I am floating around out there, along with a plentiful dose of the age-old dislike of difference.

Encountering a dominating academic tome like the DSM is part of my adverse experience of coming out in a Neuro-Typical world. I have had people cite the DSM to tell me about myself rather than ask me about how I encounter the world! From these experiences, I have found that the DSM leads people to believe that the only form of AS is extreme, antisocial, almost pathological. Those same people, some of whom are medical professionals, thoughtlessly use terms like “disorder” and “impairment” to talk about me as though I’m not in the same room, and apparently without the slightest uncertainty that, looking in from the outside, they may not have grasped the whole picture. In the end, this arrogant certainty is the most dangerous and hurtful part of my experience with clinical culture.

The Psychopathology of Everyday Life

In other blogs I describe what I see as the good things about being on the spectrum. There is a lot that is wonderful about life on the spectrum, but we will not clear the way to exploring what is positive about the AS cosmos until we stop seeing difference as sickness, and get over the deeply rooted habit of colonizing that difference with a language of pathology. A little over 100 years ago, a well-regarded psychiatric doctor named Krafft-Ebing came up with a complete diagnostic for describing the “pathology” of homosexuality. Just as the study of AS is in its beginning stages today, the burgeoning study of sexual perversion was then considered one of the cutting-edge areas of research. Because of Krafft-Ebing – and the small army of sociologists and psychologists that came after him – queerness was thought of as a disease up to the very recent moment in the West. Meanwhile, this attitude seeped down into the non-professional culture and still predominates today. You can still hear your local preacher say in one breath that homosexuality is an “abomination” and a “pathology.” Similar stories could be told about science in the service of racism. Those biases and the hatred of difference they sustain are a cultural burden that science cannot take back, but it can learn from its mistakes going into the future, if it chooses to.

Of course, the DSM wasn’t written against people with AS, but neither was Krafft-Ebing’s book. What they have in common is their shared sense of the purely negative character of their object of study in relation to unexamined social norms, and their apparent lack of interest in what people have to say from the inside of the experience they are describing with their impressively precise calipers.

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