CACTUSPEAR.ORG PRESENTS

a random walk with asperger's syndrome

my developmental journey

Final Thoughts


While working in the anti-cult field, I learned that what one needs to look for is personal and professional flexibility.

Most future therapists accept as their own a relatively stable worldview while in school or training. That is, a way of ordering or making sense of an often chaotic world. There are exceptions, of course, but most trainees adhere to this worldview for the rest of their careers, perhaps with gradual or incremental revisions as they and their field change and grow. This isn't necessarily a bad thing for most professionals and their clients most of the time.

The other side of the coin of professional flexibility is personal flexibility. By that I mean the realization that only by being present with one's entire self will one be able to reach the other person. Artists and writers have always understood this principle, the need to invest one's entire being in one's work. You may be able to fake it awhile, but withholding any significant part of yourself only risks the ultimate impoverishment of the work.

Even as we recognize the importance of language in good communication, we must not confuse doctrines, structures, and other formalized orderings of reality with reality itself. The former are guides to help us with the work, and we should never allow them to interfere with it.

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A few words about the so-called classics of literature. If a book means nothing to me, is it still a classic? If a tree falls in the forest, ...?

What I'm suggesting is that there's something between the writer's cup and the reader's lip. That something is the self, the person, and the experience, imagination, and humanity of the reader, without whom and without which the exercises of writing and reading are pointless.

I have my own classics. Some might be on others' lists; others might not. If you scratch the surface, I think you'll find that this is true of many readers. In my early adulthood, it was The Indian Tipi by Reginald and Gladys Laubin, Be Here Now by Baba Ram Dass, The Autobiography of Malcolm X, and 1984 and Animal Farm by George Orwell. More recent favorites include Bury My Heart At Wounded Knee by Dee Brown, Glory Bound by Woodie Guthrie, and The Legacy of Luna by Julia Butterfly Hill. Statements in plain language of idiosyncratic principles, of different ways of looking at things.

The school didn't assign these books, not because they were irrelevant to our lives, but because they would have been seen as subversive to its mission. It was like living in the Soviet Union. The Orwell books, however, were on a suggested summer reading list. (I chose them because they were the shortest books on the list.) Trying to read with the eyes of others more typical than myself, as I was often asked to do in school, would have almost certainly neutralized or neutered the important lessons in life I took from my classics.

I didn't discover the books that would prove to be formative and transformative in my life until I abandoned, at least temporarily, the idea of living a life that met conventional educational, career, and social standards. It wasn't until my early adulthood that I felt free to pursue that which was important to me, without reference to externally imposed standards.

Depending on one's point of view, Asperger's is either the absence of the ability to take social context into account, or the presence of the ability to ignore it. Take your pick. So-called typicals lack the latter capability just as surely as those with a diagnosis of Asperger's lack the former. (Frith, p. 90)

I say, never read a book simply because someone says you should. Don't waste your time; read books that speak to your heart.

I'm not a literary person and I don't live in the metaphorical world of fiction where nothing means what it is and everything means something else. Nevertheless, here are the literary figures with whom I identify. Peter Pan, who didn't want to grow up, take a career, or take responsibility for a family or a mortgage. The Little Prince, who was "always and forever explaining things to ... grown-ups [who] never understand anything for themselves." And Peter in The Diary of a Young Girl, about whom, his friend, the author Anne Frank, wondered, "And yet why should he keep his innermost self to himself and why am I never allowed there?"

In the end, it's about the stories we tell. Let's start telling some deeper and richer stories about growing up different. In my own case, I've come full circle, from hating school, from being on the receiving end of the harsh and unforgiving pedagogical stick, to being an aspiring writer who's trying to take back the instruments of communication and the means of creative expression.

§ § §

People sometimes comment on what they see as my distance. What they don't realize is that they're as distant from me in their attitudes, lifestyles, and social habits as I am from them. All of the issues that surround difference, including alienation, distrust, ignorance, misunderstanding, and even hatred and bigotry, work equally well in both directions.

I've never been able to picture myself married. This is due either to a failure of imagination or to a lack of female friends, or both. As a youth, I once half-jokingly said that maybe when I was sixty-four, I'd give it a try. Now that I've turned sixty, sixty-four doesn't seem all that old, so I've postponed the diabolical event until eighty.

§ § §

It's wonderful to have a gift, but for some people on the neurobiological spectrum, the blessing is mixed. The special skills we possess tend not to be marketable. The ability to do calendar tricks, for example, may have value for some, but a neurotypical accountant will almost certainly earn more money over a lifetime than a parlor trickster.

The determining factor for success in almost any endeavor seems to be the presence of stereotypical socialization skills.

Life may be better understood backward, but it must always be lived forward. As I entered my eighth decade, it occurred to me that, as a child, a half day at school, rather than a full day, might have served me better. That is, a half day of instruction in a group setting, along with other activities, with the remainder of the day reserved for self-directed, though supervised, home study.

One of my passions as a middle schooler was reading on my own time a middle-brow encyclopedia that was aimed at a mass-market scholastic audience. Reference and supplemental materials, including encyclopedias, which by the way have a rich and under-appreciated history of their own, were seen as a means to an educational end, not as a worthwhile end in themselves.

On the quantitative side, there's little chance that a home-schooling strategy would have been successful. Few have been able to make a significant mark in the sciences while working outside of the formal system.

This is less true on the artistic side, but art wasn't my strength.

The reader may have noticed that there's little I like about formal education. Perhaps we should consider as a thought experiment a return to the one-room schoolhouse.

Being in different stages of development, the students in such a setting are well prepared to help each other. As any educator can tell you, the tutored teach the tutors more than vice versa. Of course, the success of such an arrangement depends heavily on the skill of the teacher. What's required is excellent classroom management skills along with wide-ranging intellectual curiosity.

§ § §

I wrote about some of my teachers in the earlier sections of this essay. I'd add that it's easy to condemn a system that throws children in the water in an attempt to teach them how to swim. From the point of view of those who nearly drown, only to be thrown back in the next day, this is insanity.

Stereotypical socialization is so important to the ordering of human society that it's often wrongly taken as a marker for personhood itself. Thus, the socially atypical student is at risk of being labeled a non-person, and the horrors we've seen over the years in mental health institutions aren't far away.

One might as well say that a person who's missing a limb is a non-person.

Perhaps one can with effort understand the logic behind a system that not only tolerates but actively promotes a program of cruel and dehumanizing mechanical sorting. But how do we get beyond such obvious and blatant shortcomings?

However incomprehensible its actions may be to the flailing and terrified student, the institution is in fact acting in what it believes is its self-interest. All institutions exist to promote a set of social values and to act as guardians of those values.

The most important point of contact between the school and the public is, of course, the teacher. Yes, enforcing academic standards is a part of their job, but so is acknowledging and affirming the humanity of all of their students, including those who are failing.

Perhaps the schools would achieve better outcomes if they made it their policy to publicly admit that any failures that may occur are their own responsibility, not the responsibility of the child.

It's a troubling paradox that although institutions are created by and populated with humans, their collective behaviors and attitudes are often stubbornly lacking in the uniquely human qualities. Anyone who's ever butted heads with authority can confirm this.

Our job as persons of neurobiological difference is to forcefully advocate for humane treatment within institutions that have a record of failing to show the full measure of their humanity.

§ § §

A burning issue in the field of psychology is that of personal change. Entire disciplines, such as behavior modification (now euphemized as applied behavior analysis), psychoanalysis, groups, recovery programs, and self-help, to name a few, are based on the assumption that people are capable of change. The pursuit of change is a booming, multibillion dollar per year business, much of it centered in nearby Marin County. Suggesting here that maybe in the end people don't change all that much is like suggesting in Rome that perhaps Mary wasn't that much of a virgin after all. How far are you going to get?

I've read that the mental health community is nevertheless beginning to debate the issue of change. Whether we should even try to make everybody the same. Whether all the lilies in the field need to be the same color. If you could wave a wand and make everyone neurologically the same, then you would risk losing the richness and sustaining qualities of a robust biological diversity. Your Ma, nature, is smarter than you are.

The psychologists James Hillman and Michael Ventura have concluded that what's needed is a discourse, a conversation, about the seemingly opposite poles of change and changelessness. (Hillman, p. 11)

What are the agents of change? Prescription drugs and psychoactive street drugs; living voluntarily "off the grid," far from the maddening world; extreme diets and fasting; love and sex; fundamentalist, evangelical, and proselytizing religion; mantra meditation; non-tourist travel; heavy exercise; individual and group therapy; self-help books; a liberal arts education; confessional writing; and time, the physical maturation process. I've tried them all to no avail. Looking back, I'm glad that the more extreme techniques didn't kill me.

I'm aware that many maintain steadfastly that change is possible, and that some even go so far as to assert that anyone can do anything. I'd invite them to try the following experiment: cut off close contact with family and friends for one year. Repeat the process each year for a lifetime. Then maybe we could have a conversation.

Extreme or absolute notions of change collapse in on themselves. Their proponents must know that, no matter how trendy their convictions may be, if they're neurotypical, they cannot change and become like me.

What would it take to bring about significant change? A nervous system transplant, including the brain, brain stem, spinal cord, and all the nerve endings throughout the body.

The romantic in me would like to believe that love conquers all; the scientist that psychology and pharmacology cure all; the religionist that ritual and belief make it all better; the realist that it's all pissing into a steady head breeze. Nevertheless, I remain optimistic, as no one can predict the future. Breakthroughs happen, and when they do, it's usually in their own way and in their own time.



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