Despite my troubles in therapy, I had a second breakthrough, this one while working with the aforementioned Ursula Sherrill in State College, Pennsylvania. I had stumbled onto the subject of autism while reading a magazine article outside of our sessions. The connections between what I was reading and my own life were uncanny. It was as if someone had poured a bucket of water over my head. Words and phrases were leaping off the page. When I asked Ursula about autism, she said she didn't know, but would check into it. The next week she reported that her superiors, with whom I hadn't spoken, had informed her that I wasn't autistic. She refused to discuss the matter further.
The term autism, which is derived from the Greek word for self, refers to a constellation of lifelong neurological, cognitive, and social deficits that first appear in early childhood. Autistics are generally incapable of forming close personal relationships. Rather, they exhibit some degree of emotional detachment or dysfunction.
Low-functioning autistics often retreat into a world of their own and appear to be unreachable. In certain cases, they may even require institutionalization. Higher-functioning autistics can be successful in their careers and lead lives that are "typical" (normal) in every way, except for the absence of close personal relationships. Most in the spectrum are somewhere in between, each of us with our own strengths and weaknesses, which may or may not be described in the diagnostic manuals.
I should add that some researchers believe that certain kinds of repetitive or excessively rigid patterns of behavior are linked to autism.
Asperger's Syndrome, a subset of the Autistic Spectrum, usually refers to high-functioning autistics who have social deficits that range from mild to severe. (Frith, p. 8)
Another related medical term is Pervasive Development Disorder (sometimes called Pervasive Development Delay), which unfortunately has fallen into disuse. I like the word "pervasive," because it implies a condition that affects every aspect of one's life, and the word "development," because it suggests the lifelong processes of emotional growth, adaptation, and maturation.
It's common in the world of developmental diagnoses not to fit perfectly into any single category. It's okay; my feelings aren't hurt. Those of us who are different are already used to not quite fitting in anywhere.
I read a book by Judy and Sean Barron about their family's struggles with autism. There's a passage where Judy and her husband, after years of frustration with programs and techniques that had failed to help their autistic son, Sean, decided to call a halt. They had realized that the techniques were taking an emotional toll not only on Sean, but on themselves. Not to mention the expense, which was substantial. They usually stayed on the wagon for a short time, until the next latest, greatest technique came along, which they again found irresistible. (Barron, p. 168)
There's no laboratory test or diagnostic biomarker for most developmental conditions, including autism. Clinicians are, therefore, forced to rely on behavioral symptoms as a guide, and to exclude other possible causes. This is an expensive, labor-intensive, imprecise, and in many cases, I would argue, a highly subjective process.
Diagnostic tests that are designed to provide greater objectivity do exist, however, on paper and on the Internet. I don't know whether to treat them as solid science or little more than amusing parlor entertainment. For what it's worth, I scored on the Baron-Cohen diagnostic tests about the same as the general, non-autistic population in the Systematizing (compulsive/obsessive) Quotient and in recognizing facial expressions.
As I feared, my score on the Autism Quotient was in the mid-range among those who have a formal diagnosis of autism. The worst news came, however, when I discovered that my Empathy Quotient was considerably worse than those of most high-functioning autistics or Asperger's. Their scores are, in turn, considerably worse than those of the general public.
The therapists I've seen seem to be motivated by what I call the "disease of the month" syndrome. For example, in the 1980s most of them insisted that I had been sexually abused as a child. This was happening, of course, when reports of child abuse scandals were appearing regularly on the nightly news. I have no recollection of any such incident in my own life.
My therapists also erred in ignoring the fact that sexual abuse tends to play itself out specifically in the sexual areas of one's life, as opposed to other areas. With me, all aspects of social interaction, not just sex, are compromised.
The same thing happened when the dyslexia and attention deficit disorder crazes hit the popular press.
To be fair to the therapists, however, some researchers believe that most individuals who have a history of severe abuse or trauma exhibit a constant state of fear or anxiety.
I've raised the issue of absent or improper diagnosis with some of my therapists. They seem to think that they aren't responsible for diagnosing illnesses that are controversial, little known, or only recently recognized. The vicious and endless cycle of ignorance and blame shifting. In addition, they apparently believe that it's okay to make a wrong diagnosis, so long as one is trying sincerely to make a right one. That is, they define therapy as whatever happens while the meter is running.
For example, Jonathan of the Wright Institute in Berkeley promised me in our first session that my life would change for the better within the first two or three months of therapy. When no such changes were forthcoming, I asked, "What do I need to do to be able to take advantage of this therapy? Are there adult preschool therapy sessions that prepare you for the real thing?" He laughed. I was apparently the only client who had ever challenged the effectiveness of his therapy.
My issues were troubles understanding fiction, aversion to touch, and difficulty with activities that require a sense of rhythm. I told him that I'd been reading about the Autistic Spectrum and felt that many of my symptoms were similar to those of Asperger's. He never addressed the possibility of a diagnosis of developmental issues. To his credit, however, he did ask, "What would such a diagnosis mean to you?"
I have four answers.
• Knowledge is power. The truth makes you free. You cannot know too much or learn too much. All the great philosophers have advised us to know ourselves and to know ourselves well.
• Inclusiveness. A feeling of belonging to the human community, not as a visitor from outer space. Sean Barron, who had severe behavioral issues as a child, and who was often on the receiving end of stern discipline, posed the question: "Could it be that what made me like this was a disease of some kind and that I was not a horrible person after all?" (Barron, p. 229) It's important to take these developmental issues, issues over which the sufferer has little if any control, off the moral platform.
• Access to resources. You must have a formal diagnosis of HIV/AIDS, for example, before you can take advantage of the services that are available for that specific ailment.
• Trust in public institutions. I'd like to believe that medicine and therapy are there to serve our needs, not we to serve theirs. It's important that people feel confident that when they present themselves at the doorstep of a helping professional, they'll be taken seriously and will get the help they need.
I'm ashamed to admit that I ended up screaming at poor Jonathan and stomping out of his office. Such actions on my part are, of course, indefensible, regardless of the provocation.
Autism and other causeless and cureless conditions present some of the greatest challenges and greatest opportunities for a practitioner. While she'll need to make appropriate use of every effective tool she has been taught, it's equally important for her to be able to put aside, temporarily at least, those techniques that prove unhelpful for a particular client.
I wonder if anyone has studied the Sean Barron "ah-ha" phenomenon that accompanies the discovery that you aren't alone, that you no longer need to suffer in silence and isolation. That is, whether an accurate diagnosis can by itself help to heal the patient.
I was only able to find one paper (published in 1981) on the subject. It said that patients in an observational study who are tested do better as a group than those who aren't, regardless of the results of the test.
When you're hurting, you'll spend almost any amount of money in the pursuit of a cure. I invested about two hundred and fifty hours of my time in therapy. I haven't kept all of my receipts, but if my average hourly copay was $35 in 2009 money, that comes to about $8,750 out of my pocket. Not to mention a roughly equivalent amount paid by my insurance companies.
Autism raises important questions about us all:
• Is what passes for civilized social interaction merely a set of rote, memorized procedures, or is it something more?
• What does it mean to be human? Poets can admit to math-phobia and still retain their claim to humanity, but poetry-phobic people like me sometimes cannot.
• Should we make exceptions for the exceptional?
• As Lenny Bruce once asked, "So who's deviant?"
I know that some people swear by their pills, but one of my problems with drugs is that the side effects are usually worse than the disease. Another important concern is that, as external impositions, drugs tend to deny you the dignity of your own struggle. And they are particularly pernicious in that they mess with your brain, the very organ you need most to help you with your recovery.
I learned in my anti-cult work that if there's a cure, it's to take back control of your life, and that includes taking control of your recovery. In fact, the two are synonymous, at least in the beginning.
I think we can agree that every child is unique and special and deserves to be treated as such. It gets harder, however, when the discussion turns to the disabled, those who are seen as "less than". They want us to be an undifferentiated mass at which to throw drugs or other interventions in a hit-or-miss fashion like darts against a board. Some professionals have a hard time with the proposition that every developmentally challenged individual is different from every other. An obsession with putting people in boxes is a symptom of ignorance or lack of resources, not evidence of knowledge.
There's no pure autism or pure Asperger's, any more than there's pure non-autism or pure normality or pure typicality. Except for identical twins, perhaps, we all have different fingerprints and DNA. I have nothing in common with other developmentally challenged people other than the challenges themselves.
Imagine a classroom with thirty pupils. Let's say that three of them are diagnosed with a serious learning disability. Let me pose the question: What's the profile of the other twenty-seven? Take a look. They're short, tall, male, female, fat, skinny, smart, stupid, athletic, nonathletic — there's no profile. Such a notion is nonsensical.
Yet we insist that the three who are diagnosed are somehow all the same.
The psychological term "scatter" refers to a highly uneven pattern of strengths and weaknesses that, when viewed as a graph, more closely resembles a seismic event than a smooth, horizontal line. We should all take pride in our strengths, such as they are. As Uta Frith points out, however, these "'islets' of abilities are not so much tranquil oases as volcanoes, blatant signs of underlying disturbance." (Frith, p. 91)
Mainstream culture alternately glorifies and patronizes those with scatter (think of Van Gogh, Einstein, and Bill Gates). Love them or hate them, we seem incapable of seeing them as whole, fully integrated people.
The lesson is that human beings are quite capable of being good at one task and bad at another. I don't necessarily want the person who prepares my taxes to paint the picture I hang in my living room. Or the person who fixes my computer to deliver my child. Or the person who coaches my favorite football team to install the air conditioning equipment in my home. There are different kinds of skills.
Looking at the world, I see scatter — people who are wonderful at one activity, and rotten at everything else. That is, vertical slices of ability. Others see non-scatter, or horizontal slices. Their world is divided into the smart, competent people who can do almost anything, and the dumb ones who are good at almost nothing. This is the politics of modern medical science, the politics of the hardened categories of neurobiological nomenclature, and the politics of unforgiving mathematical methods applied to quirky, unpredictable, and often internally self-contradictory human beings.
As a person who has one foot in terrestrial human affairs and one not, I prefer to think of people as analogous to stars in the sky. Although no two stars share precisely the same characteristics, we humans have long enjoyed lumping them together into constellations. Which stars are included in any given configuration is determined by our convenience or by historical or cultural convention. I'm sure that the stars themselves care little about what we think.
Stars in a constellation may be nowhere near each other in actual space. They appear close only when viewed from earth. For example, the most distant star in the Little Dipper is about five times as far from earth as the closest star in the same constellation. Not close by any yardstick.
The recent controversy involving Pluto and the dwarf planets confirms our belief that science is a dynamic, ever-changing process. It also underscores the importance of accurate, meaningful nomenclature. If you don't get the names right, you probably won't get the science right either.
Perhaps the "will to normality" that causes children to feel that they must become more like their peers will always be with us. But are these pressures there to encourage those who are different to land in the best possible situation for their personal growth and development? Or are these pressures there so that they will simply require no additional special attention? Saying that special children need special care is just another way of saying that all children — developmentally challenged or otherwise — deserve attention and care.
The proper care of a child begins with an honest evaluation. Where she is today, not where you'd like her to be tomorrow. It's true that, at least in the short term, those of us who are different sometimes make additional demands on finite resources. It's equally true, however, that each of us in our own way has much to give back.
As I wrote on a previous page, I don't mind it if the educational system aims the bulk of its programming at what it thinks the norm is. So long, that is, as it makes adequate provisions for those who don't fall into the middle of the curve.
The problem isn't only the finitude of available resources. There's also an issue of outright bigotry, the idea that people shouldn't be different, that they're somehow to blame for their differences, or that they're less than full-fledged citizens deserving of a first-class education.
It turns out that high and low achievers have more in common with each other than either has with those who fall into the middle of the curve. Frith argues that academic precociousness in the sciences, for example, is at least in part a result, and not a cause, of social dysfunction. That is, those who are socially dysfunctional but who have active minds often take refuge in activities that require few or no socialization skills.
My undergraduate concentration was in math, and my experience tends to confirm the above observation. Discipline and the ability to concentrate for long periods of time are usually more important than innate talent, whatever that is.
Donna Williams wrote with insight and compassion that before we ask people to join the mainstream of society, we should first make it a welcoming place that's worthy of their souls. (Williams, p. 207)
The good news, however, is that my developmental issues are non-progressive, and that under certain conditions it's possible, with effort, to make limited, incremental progress. The bad news is that, despite any progress I may make, the gap between the so-called neurological typicals and me continues to grow over time. That is, others grow and change at so-called "normal" rates while my growth rate is less.
Childhood | Early Teens | Later Teens | Adulthood | Therapy | Autism | Final Thoughts | Bibliography