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I
am, whether for good or for ill, a rather inconspicuous fellow. I would
neither stand out in a crowd, nor would my actions locate me
sufficiently at variance from most people I know to be noticeable. I am
well practiced and can, though oftentimes only at face value, play the
game just like a pro. Nonetheless, I eat alone, live alone, spend
holidays alone, have talked to myself since I was a
boy, and feel, on occasion, an invisible bulwark of
disorientation from others. Still, notwithstanding, or perhaps due in
part to, my reclusive habits, inflexible online routines, and a sliver
of protracted social awkwardness, I am, as I
navigate through my fifties, remarkably content. Indeed, I might even
describe my predominant current mood as blissful.
Yet,
I wear a mask. As a tenured full professor of sociology at a Kansas
City area college, born and raised in the City of New York and its
suburbs on Long Island, I have, in feigning the prescriptive
deportment, enjoyed a string of academic accomplishments. Even so, many
of my gains were realized despite
an ample diligence to cure me. By
the same token, one of the more salient motifs within my biography may
be characterized as a recurrent failure at conforming to expectations.
In my professional life, for instance, it took me roughly 25 years, in
the end through an instructional consultant, to enhance my
effectiveness at relating to students.
If
I have learned anything, it is that an acquiescence to one's
distinctiveness should not be mistaken for a preoccupation with one's
limitations. At 14, an adult declared, I would
likely identify with a human reared by Martians,
Valentine Michael Smith, the lead character in Robert A. Heinlein's
popular science fiction novel, Stranger in
a Strange Land. From my
early childhood years, my life experience has staunchly situated me as
the self-conscious performer, the outsider, looking
in while crafting a repertoire of multiple impersonations through the
upstairs bathroom mirror.
In
graduate school, I instantly identified with the depictions of
University of Chicago sociologist Charles Horton Cooley (1864-1929) on
the looking-glass self.
In summary, I had observed the presentation of my own self in the
deleterious image of how, at that time of my life, I believed others
viewed me. Still, even while accounting for these literal and
metaphorical reflections, my temperament, distressingly,
rarely matched my intent. Once, I embarrassed myself when, in the
presence of a role model, Tom, I accidentally called myself "Tom."
Thenceforth, given my perpetual state of personal insecurity, I
attempted, with mixed success, to avoid him entirely.
"All
the world's a stage," I am, more so than the majority, well aware.
Life's scripts, I have frequently observed, always seem more second
nature to others than to me; but scripts, the prepared kind, furnished
an escape to an otherwise unavailable
world. My acting interests began after watching The Paul Winchell Show
on ABC, not the later and syndicated Winchell
– Mahoney Time. I actually disliked that
second program and hardly ever watched it. Though not quite like Kukla,
Fran and Ollie, which ended in its first
and major run while I was still in diapers, the arrangement of the
syndicated version impressed me as a series of
intermittent puppet shows rather than ventriloquial routines. The great
Winchell himself was rarely on set, and the time
devoted to Jerry Mahoney and Mortimer Snerd was considerably surpassed
by cartoons.
At
8 years old, after triumphanty persuading my mother to purchase a Jerry
Mahoney look-alike figure for me, I became a ventriloquist
myself and, over a period of several years, won numerous local talent
contests. Subsequently, I performed, rather
skillfully I would say, following a sequence of method and other acting
classes, and I was a radio newscaster, writer, and producer in my teens
and then again in my thirties. Being able to play to an audience has
continuously served me well. While my social insight may still be
somewhat astigmatic, my acting acumen has, over time, become a
corrective lens.
The
framework for this project, emancipatory
constructionism, is a new
critical theory, a radical
perspective which has alternately been termed postmodern
critical theory. It resembles, to varying
degrees, critical
postmodernism, post-Marxism,
and, perhaps most significantly, cultural
sociology. Indeed, new critical theory and
cultural sociology can each be situated within a broadly based cultural
turn in the social sciences. Whereas
cultures, and an array of culture traits, had often been regarded
merely as the objects for treatment or influence by independent
variables, they are now are examined as explanatory factors, or causal
mechanisms, for various categories of social phenomena.
New
critical theories have benefited from the emancipatory neo-Marxism of
its engendering Frankfurt School
with its stalwart concentration on liberation from oppression.
Moreover, critical social theorists of each generation, including the
present one, have paid particular attention to the dialectical process
of domination and emancipation. With respect to the latter, one of the
originating points of methodological inquiry, for some critical social
theorists at least, concerns the possibility of a new civil order, an
eutopia-cum-utopia (to wit, an as-yet unattained good place), one
which, by dismantling the systemic hegemonies of power elites,
approaches universal enfranchisement and human rights.
Since
the beginnings of the Frankfurt School in 1930, when Max Horkheimer
assumed the directorship of das
Institut für Sozialforschung
(the Institute for Social Research), critical social theories have been
eclectically neo-Marxist. However, the Freudian interests of some
first-generational critical theorists, and the second-generational
Jürgen Habermas, with his attention to communicative interaction, have,
with this recently minted new critical theory, been joined, by some
younger intellectuals, with an assortment of theoretical and
philosophical epistemologies. Significant avenues of engagement can,
for instance, be observed with critical poststructuralism, social
constructionism, ethnomethodology, critical pragmatism, and critical
pedagogy.
Additionally,
this developing radical
theory, unlike
some other branches of the critical social tradition, has been guided,
to varying degrees, by the wise counsel of Jean-François
Lyotard to be incredulous toward
metanarratives. Furthermore, reminiscent
of Antonio Gramsci's (1891-1937) historicism, such theories have also
displayed a rejection, or at
least a suspicion, regarding the possibility of
producing truly objective or empirical accounts of
social experiences. Rather, many postmodern critical social theorists
have tended to prefer what I shall term mental
and emotional ethnographies of
personal reflection over strict
quantitative analyses.
A
conscious and intentional praxis
can be understood as a relatively stable pattern of reflectively
animated social action. To reflect is to theorize
or philosophize, with particular reference to the relativity of a
concrete situation, and, in order to transcend a spurious
consciousness of culturally majoritarian
worldviews and advantages, one reflects on the
situated exigencies of an oppressed demographic. Consequently, a
liberationist struggle for human rights and social justice must be
embedded into the emancipatory
consciousness of a
truly reflective individual.
The
objective of such a struggle should be the attainment of what educator,
Paulo Freire (1921-1997), referred to, in Portugese, as conscientizacao
(conscientization
or critical consciousness), which is to say, an awareness of the social
contradictions of domination and of the emancipatory strategies for
subduing them. Indeed, from a Freirian standpoint, the collaborative
character of the educational process is encompased by a model of critical
pedagogy, namely, an educational praxis
which encourages students to explore the agents of domination and,
ultimately, the instrumentalities of emancipation.
Although
Freire developed his critical pedagogy as a tool to enlighten students,
its applications have extended well beyond. The Autistic community,
too, is unjustly dominated. Unemployment and poverty rates are commonly
well in excess of averages. This subject has been competently addressed
by Autism researcher, Simon Baron-Cohen:
In
addition to poverty, Autists are routinely denied many supports which
are simply taken for granted by most persons. For instance, it remains
legal in most U.S. states to deny medical insurance to persons with an
Autistic spectrum disorder (or to individuals with numerous other
pre-existing medical conditions). Autistic children are also frequently
subjected to a variety of physical abuses, including by school
personnel. The abuses have, on occasion, resulted in death.
These
social facts have galvanized me. Given the circumstances of my
long-term self-identification with the status of nonviolent
revolutionary, and my cartography of its
jurisdiction, I emulate Freire who was, not unlike myself, a
spiritually oriented, neo-Marxian educator. As an academic, I dare say
that my cultivated posture toward all forms of Autistic praxis,
including self-advocacy and activism for others, could indeed be
summarized as fundamentally instructional and heuristic.
Correspondingly,
I would rigorously resist the utilization of conventional constructions
of apologetics, marketing, and propaganda in an educational setting,
and I once attended a series of workshops, run by a salesman, which
attempted it. Most intellectuals with whom I have broached this subject
share my distaste for confounding the artistry of teaching with one or
more modes of salesmanship. To me, an intentional exercise of the
latter within an educational environment might even approach academic
dishonesty while suggesting a want of integrity. Although the
merchandising of products has in its proper place, and there are many
ethical sales representatives, that place is not in the lecture hall.
Conscientization
was clearly influenced by an analogous construct, Karl Marx's class
consciousness. Just as
Autistic activism may be reconstituted as an expression of
conscientization and class consciousness, another version of
conscientization was popularized by the 1970s American women's
liberation movement as consciousness
raising. Briefly, the territory of
conscientization frames the perimeters of knowledge or consciousness
concerning the forces of domination or oppression and the subsequent
struggle, by conscious individuals, for emancipation or liberation.
Here it is, in Freire's own words, taken from Pedagogy
of the Oppressed (1968):
As
in Mahayana Buddhism, the bodhisattva grounds her own quest for
enlightenment as a preceptor to others, so the critical pedagogue, by
deconstructing dominative narratives and constructing emancipatory
ones, imparts her conscientization to a tyrannized
population. Approached in a thoughtful manner, praxis can, I believe,
become a normative framework for disability activism and self-advocacy.
Thus, by way of emphasizing the
strategic importance of critical reflection to praxis,
Freire, in Pedagogy of the Oppressed
(chapter 1), wrote:
Freire's
article, Cultural Action for Freedom,
echos this assertion:
Freire
believed that oppressed persons internalize their domination. Turning
once again to Pedagogy of the Oppressed,
he wrote, "The oppressed, having internalized the image of the
oppressor and adopted his guidelines, are fearful of freedom." Thus,
the oppressed person must not only fight the enemies external to her
being, those who rob her of her freedom and autonomy. She must also
fight the oppresser within. If a socially, politically, or economically
dominated individual believes that she deserves her domination, or that
she must in some fashion become resigned to it, then that inner
phantasm must be defeated, as well.
In
other words, the self-advocate must first, in her methodological
praxis, attain a critical consciousness of her oppression and of the
factors which serve to perpetuate it. She must also reject the
internalized domination of defining herself according to the values and
norms of power elites and even replicating that domination against
others. The battle for human rights cannot be merely a series of
mechanical, nonideological responses to events. Any nonviolent
revolutionary struggle, such as this one, must, if it is to have a
chance of success, be principally proactive, not reactive.
Not
unlike Freire, the Martinican revolutionary and psychiatrist, Frantz
Fanon (1925-1961), in the third chapter of his The
Wretched of the Earth (1961), identified
praxis with class consciousness:
The
differences, however, between praxis, as conceived by Freire, and
praxis, as imagined by Saul Alinsky (1909-1972) in his Rules
for Radicals (1971), are simple and
straightforward. Superficially, Freire was an educator. Alinksy was a
community organizer. Freire was a Roman Catholic who developed a system
not terribly at variance from Latin American theologies of liberation.
Alinsky was an atheist who demonstrated his willingness to work with
various groups, including those in Roman Catholicism and Protestantism.
In
reading Freire, I could not help but feel his compassion for the poor
and his overriding desire for them to recognize their dominated
statuses and, through conscientization, to ultimately become
emancipated. Alinsky, on the other hand, was a political pragmatist – a
proponent of realpolitik. To abuse an analogy, he turned Machiavelli
upside down on his head. Even a superficial reading of of Alinsky makes
his position evident that dominated groups, in the course of their
organizing, must utilize similar tactics and expediencies to “the
prince.” By such means will they accomplish their objectives over and
against their oppressors.
As
I have already stated, I find Freire’s approach to be much to my own
liking (and much like my own). However, I substantially reject
Alinsky’s rules
as exemplary of the sort of consequentialism often characterized as
“the end justifies the means.” In my view, the ultimate revolution in
human rights and social justice, whether pertaining to Autists or to
other socially dominated populations, will come through an education
into conscientization, not through the ruthless exercise of
disparagement and dissimulation.
Within
this narrative, I shall make little distinction between my praxis, my
activism, and my research methodology. Praxis, for me, is
an intensely personal activist, self-advocative, and transformative
process. Attendant to my professional capacity, as an academic, it is
cemented to both my radical pedagogy as a sociology professor, in my Introduction
to Sociology and Social
Problems classes, and to my membership in
the National
Education Association (NEA). While,
admittedly, I have not been particularly active in the college's
chapter of the NEA, the mere fact that I belong to an association
approximating a union
reinforces a significant dimension of my self-identification.
By
means of my emancipatory research methodology,
I will recount, through self-advocacy, the
taken-for-granted narrations of knowledge and power in my own social
contexts. Consequently, as I progress through the passionately
engaged and phenomenologically driven praxis, such
as I have enacted in this reflexive
historiography, I will explore the many
stages of life through which I have till now journeyed. Thus, I shall
describe, as graphically as possible, the fifty-one-year occultation of
my voice, one chronically fearful of a universe of unknown
consequences, and, in consideration of my ultimate activism, will
present a culmination in that voice's special revelation and intimate
unveiling.
Accordingly,
information which may frequently be assumed to be simply commonsensical
is often a residue of influence, suggestion, and oppressive power.
Occupying elite statuses confers dominance in defining that which is
real, while escaping the resulting mass hypnosis is a necessary, though
rarely sufficient, cause of emancipation. In my own case, the process
of emancipation has involved an acknowledgment of the trance of
oppression into which I had fallen. It has also required a deep
reflection on the biographical agents of my domination.
Inspirational
dialectics of oppression and liberation have captured the imaginations
of people in many societies and through numerous histories. They tell
us the tales of the possible or, as sociologist Karl Mannheim
(1893-1947) described, they map out the paths from ideologies of
dominance to utopias of transformation. As European Americans and men
have historically been positioned to redact the identities of,
respectively, racial minorities and women, so the parameters of
disabled individuals have been contoured by others. Herein, I
contemplate my own experiences with this process.
When
I was a child, my problems must have appeared insurmountable, and I was
seen by several psychiatrists. Collectively, in the process of serving up,
and then force-feeding me, their mind-numbing neuroleptics,
antidepressants, and electric shocks, they
circumscribed my societal context through disability and
disempowerment. Consequently, I had, over the intervening years, sworn
to myself, many times over, that
I would never again darken the door to a psychiatrist's office.
However, in March of 2007, following the recommendation of my family
practitioner, whose prescriptions of a sleep medication and,
subsequently, a mild tranquilizer were ineffective at resolving my
symptoms, I visited a psychiatrist for the first time since I was 14 or
15.
The
complaint was direct and specific: I trembled when attempting to lay
down for the night, felt dazed and stoned for most of the following
day, and compulsively scratched my scalp. The
cause was self-evident and repulsive: My apartment
was infested with cockroaches. They would crawl into my bed, onto my
back, and into my hair and rectum when I was asleep and going to sleep.
It was perhaps my most intensive experience with sleeplessness but by
no means my first. I have often laid awake, or paced back and forth,
panicked with sinus congestion or angered by background noises
(possibly hyperacusis).
I
was not seeking a diagnosis, but I received three of them. The verdict
was Autism, as the primary condition, with comorbid
obsessive-compulsive disorder (OCD) and comorbid chronic insomnia.
Statistically, OCD is dependent, more
prevalently, on Autism than the reverse. As to the insomina, both
Autism, perhaps due to its nearly universal association with
anticipatory anxiety, and OCD, encompassing intrusive thoughts as well
as undesired behaviors, can often be unequivocally implicated, but,
regardless of the culprit, a seemingly interminable focus on those vile
cockroaches kept me awake night after night.
While
the insomnia has now passed and the OCD is barely negligable, the
diagnosis of Autism has, for me, been the unraveling of a neural koan,
where the one hand clapping, in a sequestered silence, has, at long
last, encountered the other hand. It came a few weeks after the other
diagnoses and was, my psychiatrist said, deduced from my self-reports, not
from my demeanor in his office. That is to say, based solely on our
dialogue, and on my appearance, he would never have suspected it, he
said. Moreover, although not all clinicians
differentiate between Autism and some other categories of Autism, among
a portion of those who do, I would, owing to my normal verbal and
cognitive development as a toddler, be considered Autism.
The
Autism factor shed light on my eye contact practice
sessions, at a time when gazing straightaway into the eyes of others,
which I can best describe as emanating the incandescence of miniature
suns, would commonly burn
my eyes. Additionally, I am unaware as to whether there was any
relationship, even though I do know that I would often make
unintentionally unusual faces, but many years ago, on a commercial
break during a taping
of The Joan Rivers Show,
Ms. Rivers, staring directly at me, comically parodied my facial
expression by crossing her eyes. At the time, her behavior made no
sense to me.
Autism
also explained my rote memorizings of long lists of items, my off-beat
jokes, my frequent catastrophizings,
my insecurities regarding addressing certain people
by their first names, my lengthy tangible and online
catalogings of information, and my carefully cultivated
prosodies. There were then my pedantic monologues with my never-ending
analyses, prompting some adults to call me an encyclopedia
or a computer,
and my emotional meltdowns, which have sometimes resulted in suddenly
discontinuing most email correspondences for long stretches, as many as
three years, at a time, or not answering the telephone and ignoring
messages.
My
perseverations,
defined as the reiterations of words or actions
even after their initial stimuli may have vanished, and my routines
or rituals
have varied considerably throughout my life. If, in autoecholalia,
turning a particular phrase delights me, for whatever reason, I may
repeat it verbatim, aloud (when alone) or silently, over and over
again. Moreover, I frequently recite, or mull over, a sentence or a
paragraph until i subjectively get it right.
The use of words, their proper use in my judgment, has been a perpetual
source of personal fascination.
Ritualistically,
since I was, ages ago, uncertain of how to handle a coin-operated
washer and dryer, I had fallen into the revolting habit of never
washing my clothes. Even though the catalyst has long since vanished, I
have, for decades, been piling up dirty clothes while purchasing
brand-new ones. As a child, I stridently whined if I could not sit in
my favorite seats. Among my other routines have been stimming,
such as pacing and chewing my tongue as a child, special
interests, and OCD.
Given the high comorbidity rate of OCD for Autistics, my psychiatrist
considers the OCD to be a dimension of Autism.
For
my entire childhood, my egodystonic,
or self-repugnant, OCD manifested in such modes as a fear of heights
and in compulsions to manually "make it even," belch, curse, chew on
pencils, and step on sidewalk cracks. The OCD was both comorbid with my
Autism and aggravated by it. What is more, given my introversion and
limited social facility, I coped with the OCD largely on my own.
Admittedly, I still, to this day, have small traces of OCD, including
my obsession over not driving into parked vehicles and a lifelong
picking at my scabs and nails, but I credit the rationality of the
Autism with helping me intellectualize most
of it away.
Fabricating
voices either ventriloquially or otherwise, mimicking or echolalia,
concocting puns, and then regurgitating all of them pacified me. I
mastered a radio call-sign: 60,000 watts,
clear channel. This is the flagship station of the National
Broadcasting Company, WNBC, New York. I
also reprised my
own sign-off ad nauseam: WHPC
now concludes its programming for the day. Up next, WBAU carries you
over till 1 in the morning. Then WHPC returns tomorrow at 9. This is
Mark A. Foster reporting for WHPC news. Have a pleasant evening and a
better day tomorrow. The soothing
predictability sterilized ambient babel.
JFK,
UFOs, dictionaries, helicopters, the Trachtenberg Speed
System of Basic Mathematics,
constructed languages, news and weather, theme songs, and consecutive
plays of a Triumph of Man
record (a souvenir from the Travelers Insurance pavilion at the
1964-1965 New York World's Fair) are an autobiographical sample of my
Autism interests. They are egosyntonic,
or self-consistent,
repetitive, more trancelike than hobbies or pastimes, and may confound
some persons not on the Autism spectrum. Their
determinateness is my custodian of untold joy and my
architect of resolute percipience. Their want
is my harbinger of inward privation. With
television shows, such as Superman,
What's My Line?,
and Babylon 5,
missing a single program was invariably disquieting.
Many
of my interests and activities have been shaped by a convergence of my
academic involvements and my Autism. Beneficially,
my marginalization, and derivative alienation and introspection, have,
while I earned a Ph.D. in sociology
and history
and pursued an academic career, provided relevant texts for personal
reflection. Sociology may seem an odd field for an Autistic. However, I
have, as a sociologist, examined subjects which,
interpersonally, I could never satisfactorily apprehend, and, by
specializing in social theory and religious studies, I tailored my
youthful absorptions with conceptual systems construction and the study
of religions into my full-time livelihood.
In
a similar vein, my hoardings of books, domains,
listservs, and other items, costing me several fortunes, have always
coincided with my infatuations du jour. As a testament to my procession
of fixations, I currently own 25
domains, run 23 websites, operate about a dozen
listservs, and possess in the vacinity of 25 ventriloquial knee figures
(dummies). Meanwhile,
as the years have gone by, my library had grown so prodigious,
incorporating well in excess of 30,000 books, that, in 2007, I was
pressed by the apartment manager, under threat of my lease not being
renewed, to move most of it into a storage facility.
I
had previously ascribed my rituals and routines, such as the endless
book acquisitions, to having an addictive
personality, but I no longer utilize that
narrative. While I have been a long-standing critic of the recovery
movement's discourse on the loss of
willpower and its essentialist reification of addiction, treating addiction
as a real thing, I was, at the same time, unable to decipher my
inclination to become thoroughly engrossed in behaviors, and, in all
candor, I fell short when fighting to eliminate, or even moderate,
them. Since cognitively restructuring them as Autism preoccupations, I
find myself strangely in control.
My
fascinations with a concatenation of elaborate, logically masterminded
doctrines have forged a rational order out of my social chaos while
simultaneously providing an ideational map to my inward search for
meaning. With each and every one of them, I have become proficient and
loquacious. Transmodern Critical
Realism, Structural Dialectics,
the Neoplatonic
framework of Alethionomy,
the popular neuroscience of Mental
Energetics (at 15), and the bidimensional,
occultic, idealist philosophy of Soulology
(at 12) have been counted among my prior narratives.
The
twin perspectives I use currently have each progressed through
sequences of designations. These name changes have sometimes
expressed slight modifications to emphasis, organization, or format.
Alternately, they were simply dictated by tacit fluctuations in my
personal preference. Emancipatory
Constructionism (EC) is
a term I selected in 2009 in order to make
explicit the grounding of my present sociological perspective in
critical social theory. Beginning in 2004, it was
initially developed as Dialectical
Constructionism and, later that
year, as the Structurization
Paradigm. The axiological
subtext of EC, ASMÁ,
was renamed in 2008 from Structurizing.
It is an emerging,
or postmodern, practice of
spiritual transformation.
Once
inwardly selected and then outwardedly rendered in text, each
paradigm, comprising parts adopted and parts
invented, has been transformed into a comprehensive
taxonomy. I remain undecided as to whether it might be more fitting to
describe these explanatory frameworks as individual or as the
consecutive stages in the formalization of a single perspective. Either
way, without the standardization, the routine, and the constancy of an
integrative outlook on the many categories of our human experiences, as
my unwavering ground and serene center, I have struggled against an
unrelenting encumbrance and unease. In addition, I will, to this day,
spend hour after hour, immersed in angst, laboring
to logically relate some new idea to my framework.
In
search of contextuality, I have designed many alternate universes. My
aforementioned ventriloquism, in which I have played all the parts, has
conspicuously been among them. It also provided a comedic escape from
my life's tragedies. Futhermore, I created a Bajoran Star
Trek figure, Vedek
Pagh, and developed a rabbinical Society
for Creative Anachronism persona, Moyshe
Arn der Faygnboym ben Herschel der Leyvy.
These chimerical self-portraits, one set in the past and another in the
future, have functioned as expositors for my shifting stances. Telling
their stories, largely to conduct reified thought
experiments, has taken precedence over meeting with
other enthusiasts.
Additionally,
an animated banner, one I designed nearly a decade before my Autism
diagnosis, vividly headlines the portal to The
MarkFoster.NETwork, the title I have given
to my ensemble of domains and websites, and greets visitors with the
salutation, Welcome to my universe!
This Internet network, as the electronic avatar of the multiple facets
of my inward and outward being, remained incomplete without the
subsequent accession of The Collective to Fight
Neurelitism. More than a merely modest
intellectual attainment, joining the Collective to the network has, in
symbolizing and manifesting the integration of my personality, suffused
me with a spirit which might be described as rapturous.
The
approaches I applied for studying my own religion have attested to the
continuity of modifications to my worldview. Utilizing a didactic,
formulaic, and arcane metaphysics, I had become poignantly fixated on
classifying what were, I then believed, the Neoplatonic conditions of
existence into an extensive compilation of quotations. Earlier in my
life, I referred to this ritual as inspired
categorization. Classification has always
been comforting. With my subsequent reformation into a critical
theorist, social constructionist, and poststructuralist, I have, while
retaining an ostensibly similar model, refashioned the conditions into
relative names, categories, and conveniences of language. In other
words, I no longer take my
framework so seriously.
Although
I was born into a minimally practicing Jewish home, attended Hebrew
school, and became a bar mitzvah at 13, I undertook investigations for
a new faith about one year earlier. Considering I chose to briefly
continue going to Hebrew school following my bar mitzvah, if the Jewish
renewal movement were around, I might well
have stayed in Judaism. However, after briefly practicing Sikhism,
Eckankar, and, when had few heard of it, Wicca, I became active in yet
another religion in 1970. As a member, the confidence and support I
obtained for my special interests may account for my scholastic
attainments and academic career.
Throughout
the course of my life, I have, thus far, undergone three momentous and
transformative awakenings,
attaining the first, when I was 14, by embracing my current religion
and immediately embarking upon an exploration of the conditions of
existence, or worlds of God, and my spiritual faculties, such as inner
vision and faith. The second awakening, at around 40 years old, was in
the abandonment of my ontological realism, or essentialism, for a
nominalist, or an anti-essentialist, critical theory. The third
awakening, which produced my long-sought class
consciousness, was in the decoding of my
neurological riddle, at the age of 51, through the dual diagnoses of
Autism and OCD. Presently, I strive for a consummate awakening through faná,
the mystic annihilation of the prison of self.
By
the same token, I have had to resolve certain conflicts between my
religion and other areas of my life. For instance, although I am a socialist,
not a social liberal,
I have been a cultural liberal
on most issues for as long as I can remember. Since my diagnosis as an
Autistic and after, subsequently, achieving a degree of
conscientization concerning my
autobiographical status in the matrix of social domination, my
commitment to cultural liberalism has been even more pronounced than
before. Thus, an awareness of my own contexts of oppression has
increased my sensitivities to the human rights struggles of other
oppressed populations, particularly women, racial and ethnic
minorities, and, most relevant here, the LGBT community.
I
had once encountered a personal dilemma regarding a reconciliation of
the official positions of my religious community, which disallows Gay
marriage, with my own personal beliefs in support of it. Indeed, I
would like to see marriages, of any category, taken out of the hands of
governments altogether. In place of marriage, I have proposed that
adults, of whatever number or gender, could receive, unceremoniously, a
civil union license.
While, legally, it would be equivalent to a present-day marriage
contract, the determinations would be left to those persons, or to
their religious organizations, as to whether, ceremonially or
otherwise, those unions should be designated as marriages. In this way,
marriage leaves the public sphere and becomes a private matter.
I
have digressed a bit. As I said before, my concern centered around
being culturally liberal on sexual orientation when my religion was
not. I resolved it, as a nominalist,
by refusing to conflate my religion, as a voluntary association,
with the secular arena to which sexual preference belongs. In other
words, I am able to acknowledge the requirements of my religion as
covenantal obligations, binding only on believers, while simultaneously
affiming my personal views, in support of Gay rights, as a private
individual. Similarly, although I would like to see the elimination of
gender categories, I accept them within the framework of my voluntary
religious association.
Given
my nominalism,
my view that categories of particulars are only relative names and
willful social constructions, I am not an existentialist, nor do I
believe I could
ever be one. The universalization of the search for meaning, as in
Viktor Frankl's logotherapy,
is far too idealist and essentialist for my tastes. Yet, if I were
an existentialist, I would then, without much difficulty, portray my
insomnia as an existential crisis, a personal realization of the
pinnacle of angst,
succeeded by its resolutions in the diagnoses of Autism and OCD. As
things stand, however, I can only see, in my newfound awareness, the
opportunities for new language games.
Even
if the etiologies, the origins or causes, of the Autism spectrum are
not yet fully mapped, I am thankful that my own route
has been charted. My earliest memory is that of lying in a stroller as
a baby. I can curiously recollect my late mother wheeling me around the
park area which, at the intersection of Wallace Avenue, divided the two
sides of the Bronx's Pelham Parkway. At one point, a woman, who had
been conversing with my mother, dared
to look into the carriage and smile at me. My immediate reaction to
this invasion of my personal space was, I
plainly recall, a pronounced sense of irritation.
In
addition, I have lived alone, and never married, since leaving my
parents' home in 1976. Even though I have taught the class, Marriage
and Family, about two dozen times and
possess good technical understandings of romantic and other
relationships, my predicament lies in applying them to myself. Time and
again, I miss social cues, become anxious, play dumb, or lack the
competencies to respond. I think back upon my fret and bewilderment at
not knowing if I loved anyone or
if, discernably, anyone loved me. In my late
twenties, around 1983, my first date was arranged by a therapist. My
last was in 1993.
As
one chiropractor called to my attention, my back is the most rigid he
ever adjusted. Beyond my choices in words, in my teens, I became
acutely aware, through observation and from what others had told me,
that an unwelcomed and unintentional formality, with an absence of
spontaneity in body language and inflection, resulted in comportments
both dispassionate and austere. The more I craved to be emotionally
intimate, particularly with women, the more woodenly I acted. My loves
have all been unrequited. For a time, my best efforts to present myself
as less affected in my pragmatics came to no avail, even while I
wrestled with the glaring contradiction between genuinely being
natural and my exertions
to be so.
Indeed,
my seeming incompetence at cultivating successful romantic
relationships was often front stage and center throughout adolescence
and into adulthood. Periodically, and leading right up until my Autism
diagnosis, I occasionally, and always unsuccessfully, pursued a
resolution to this dilemma, and, in exasperation, I consulted,
intermittently, with several clinical psychologists and counselors. I
had once presumed that my difficulties in this area stemmed from poor
peer relations as a child, and I still believe that may have been a
contributing factor. I now recognize, however, that my willpower was,
in essence, playing war games with my neurology, as I was,
inadvertently, attempting to become a non-Autistic man. The battle is
over, and I can be at peace with myself.
Birds
of a feather do
flock together, studies show, and
I have pondered over individuals, past and present, whom I have counted
among my friends. A few have, I suspect, been persons
at various points along the Autism spectrum.
From Ronnie, who asked the same questions again and again, mostly
concerning his preoccupation with biblical translations, and twirled
his pencils to calm himself, and his nephew, Tommy, who did not speak
until he was 7, to Pat, an abrasive fellow with no social sense, to
Richard, a brilliant, donnish, and chronically unemployed eccentric who
once bit me on the ear and loves Woody Allen and Gilbert and Sullivan.
Furthermore,
human relationships, their absence or presence, have had only isolated
depressive repercussions, and being companionless has rarely been
bothersome. Still, like many Autists, I have approached been suicidal a
few times in my life (happily, none too recently). While residing with
my parents, I lived, more or less, in a realm of my own making.
Typically, I remained in my room or, whenever possible, trolled through
my favorite bookstores in Manhattan. If I were
to be home for my one meal per day, a minimalist diet which remains my
custom, I oftentimes requested my mother to leave dinner for me in the
refrigerator. As much as she disliked doing so, it could be wontedly
intolerable to eat with my family.
During
my childhood and teens, an unflagging difficulty with small talk
accentuated my artlessness at social interaction. Nearly whatever my
interlocutors would impart to me, I wound up comprehending literally.
The very fact that I regularly missed the subtlety and nuance of
everyday conversation made me a convenient target for many practical
jokes. I recall one particularly humorous incident, in my middle to
late teens, when someone persuaded me concerning the existence of a
small Latin American tribe whose members were endowed, through natural
selection, with a third eye on the backs of their heads.
Decades
before learning I was on the Autism spectrum, I branded myself a
solipsist. Lecturing to students has moderately
reprogrammed me. My infelicitous smiles, which
sometimes caused offense, resulted from "living in my head," as I have
often remarked, to daydreaming, or to simple social perplexity. Over
time, and through experience, I have ascertained that, to most people,
my passions are plainly boring. Not having much to say, I tend to be
laconic, more or less, in social situations. Fortunately, weaving one's
interests into lectures is normative for an academic, and it makes that
process enjoyable for me.
I
will
admit to being self-centered, fastened on my thoughts,
but not to
being very selfish. Like many Autistics, my staple, and
hardly egotistical, pursuit has been for social justice. In 1968, while
in the seventh grade, I embraced the New Left and joined the Students
Democratic Coalition. Through it, I
attended a Humphrey–Muskie presidential campaign rally featuring Sen.
Edmund Muskie, opposed anti-ballistic missiles, and picketed a
supermarket and distributed petitions in support of a boycott on
California grapes. As a professor, a critical social theory informs my
lectures. I consistently respond to racial and other bigotries with
righteous indignations.
In
terms of sensory and movement difficulties, I have, since I was just a
boy, rarely felt at home in my clothing and, when younger, pulled at my
garments around my neck and, to this day, near my middle. I often
ritualistically wear clothes again and again. While alone, I have
preferred to be undressed and have cut my own hair to avoid my outer
ears. In my physical education classes, I had ungainly coordination and
literally
no concept of sports. I was ordinarily the last one picked for teams.
When little, I was terrified of eye drops. To administer them, the
opthamologist and both my parents were required to hold me down. Year
round, the room temperature, even now, needs to be just right, namely,
about 83°F. My parents constantly harassed me about turning the heat or
air conditioner up too high.
Then,
as a child, or a bit now when highly fatigued, I have had panic attacks
from hearing, even thinking of, noises, like echos, barking dogs,
bouncing balls, laughter, applause, and bursting balloons. While noises
remain a distraction, gymnasiums were
a nightmare. Due
to my mental associations with ball and
bomb,
I was paralyzed by any b
words, like boom
and boy.
Seeing bits of food on or about the mouths of people would make me
nauseous. I was frightened by heights, wind, insects, and precipitively
passing objects in my peripheral vision. My sinus fixations, which
ended in three surgeries, may have been partially an Autism sensory
problem, OCD, or both.
Further,
I was, as a young boy, regrettably petrified of anyone atypical to my
experience, such as little people, Blacks, and the disabled. I feared
that my ears would permanently protrude when manipulated by barbers and
froze in discomfort. I detested being hugged, kissed, or touched,
including on the head. Overall, animals were less stressful, and better
companions, than humans. My penmanship, shy of a draftsman-like
lettering, has always been cacographic. I tirelessly protected the
objects in my world from contact with others. Second-hand items all
felt wrong to
the touch. I raged until my parents made exchanges.
Perceptually,
my prosopagnosia or face blindness, coupled with my poor personal name
recognition, is, while somewhat remediated from my youth, an ongoing
challenge. When people greet me, I am, more commonly
than not, placed into the embarrassing position of
being unable to identify them at all, not recalling where we met, or
not remembering their names. As a student, I rarely knew, or
recognized, my peers, and, as a professor, I am similarly absent-minded
with my students. In frustration, I have tried some mnemonic techniques
through the years. Unfortunately, I did not find any of them all too
profitable.
The
following statement
from Syndrome Partner Information
Australia Inc. (ASPIA)
could have been written by me:
To
make an incontrovertible understatement, I was a fish out of water.
Rather than ask for a bathroom pass, I urinated in my pants, hoping
against hope that neither the teacher nor the other children would
notice the puddle I left in my seat or on the floor. In the seventh
grade, on a bus trip to perform at Montreal's Man
and His World with my band, the teacher
saw the urine but protected me. I displayed an equable look of
mystification as I sat at my desk or wandered down the corridors. In
fact, I all too commonly got lost and was unable, without assist, to
find my classroom or, for that matter, to track down my home while
walking home from school. My surroundings appeared uniformly surreal to
me.
Gastrointestinal
(GI) tract issues are also classic Autism comorbidities. In the 1980s,
I became terribly constipated and lost around 30 lbs. over three
months. After extensive tests, all negative, a gastroenterologist
intimated that I take a bulk-forming laxative, which resolved the
problems. In addition, I continue to have periodic troubles with acid
reflux as well as irritable, loose, and irregular bowels. Anecdotally,
I often notice an association between an absence of GI symptoms and
more generalized sensations of mental, emotional, and spiritual
well-being. How pedestrian is my testimony, in this regard, I am unable
to postulate.
Likewise,
I have retained a not-so-negligible cavillous, stilted, and convoluted
vernacular speaking and writing style. To illustrate, I maintained, for
a time, that my coming-of-age suburban Long Island home was the Township
of Hempstead. As was pointed out to me,
the proper name is Town of Hempstead.
On the other hand, while I was being technically exact in casting my
local community as a village,
when most used town,
I chided people. Verbal imprecision greatly troubled me. I still often
specify, and recognize, medications predominantly by their generics, as
in oxymetazoline hydrochloride nasal spray for Afrin.
I similarly preferred terms such as, defecate and flatulate, over the
more common colloquialisms.
Furthermore,
as a child, I appear to have exhibited, like many Autistics, a touch of
hyperlexia.
That is to say, I acquired, largely through imitation, an extensive
vocabulary, but frequently without sufficiently understanding a number
of the multisyllabic words I had mastered, and I could read audibly
with a competence well beyond my junior years. Fortunately, in time,
any traces of hyperlexia from my youth had been substantially overcome,
and my mental lexicon became associated with normative definitions.
Although I retain a preference for sesquipedalian
discourse, I have, though not to an extent I would
deem sufficient, trained myself to moderate my
enthusiasm by forcing my mind to consider the requirements of my
listeners or readers.
In
closing this section of these personal memoirs, I am reminded of the
cockroaches, among this planet's most durable residents. They have,
according to estimates, been citizens of our biosphere for some 300
million years. We hominids, by contrast, are, based on current data,
shy of that figure by approximately a third. Those irksome and
intractable creatures hid everywhere in my apartment, including my bed
frame, my clothing, and an overflow drain, torturing my life and making
it, for a time, a living hell. Unbeknownst to me at the time, my
uninvited guests bestowed a cornucopia of glad tidings. Once, I hated
them. Now, I am indebted.
Having
been to hell and back, I would not recommend it. As a child, I was the
passive recipient of multiple drug and other therapies. In sum, they
were founded on the supposition that I suffered from a psychosis,
childhood schizophrenia. As best I can tell, none
of the treatments actually helped me. However, I am, by and large, a
strong-willed individual. Some, including members of my family of
orientation, had even accused me of pertinaciousness. Still, given that
many in similar straits did not fair nearly as well, my obstinance may
have been a paramountly advantageous quality. One clinical psychologist
actually irritated
me in his repeated stupefactions at my accomplishments.
Preceding
my nascent diagnoses in April, 2007, I did not know that the
first edition (1952) of the Diagnostic and
Statistical Manual (the DSM-I) of the
American Psychiatric Association only specified Autism
as a manifestation
of schizophrenic
reaction,
childhood type, my
child psychiatrist's evaluation. I came upon this
knowledge through my web surfing over the summer of 2007. Autism was
also placed under schizophrenic reaction,
paranoid type and
schizoid personality disorder.
The DSM-II (1968), making few pertinent
revisions, assigned Autism to schizophrenia,
childhood type and schizoid
personality disorder.
An
initial exhilaration at my incipient finding, which I discussed with my
current psychiatrist, turned swiftly to feelings of sorrow and anger
that I did not have this information earlier, and, above all, that I
had not been born two or three decades later into a somewhat more
enlightened era. Indeed, had my Autism not been so undisguised as
a boy, and if I had no OCD, I might never
have been diagnosed in the first place. Moreover,
considering both the striking incongruity in the quality of psychiatric
care between the 1960s and the present-day and
the nomenclature in the first two editions of the DSM,
my situation was not at all peculiar.
As
a side note, marking a massive paradigm shift, the DSM-III at once
signalized a critical reappraisal of the biological and genetic
nosology by the founder of modern scientific psychiatry, Emil Kraepelin
(1856-1926). First published in 1980, it distinguished
infantile Autism
from schizophrenia,
childhood type, but I
definitely did not meet the established criteria
for Kanner's Autism. It was not until the DSM-IV
(1994) and the DSM-IV-TR (2000) that
disorder had supplanted schizoid
disorder of childhood or adolescence, an
archaicism in the DSM-III, and childhood-onset
schizophrenia was
assessed as very rare.
Taking
into account these nosological modifications, I had,
in effect, been diagnosed with Autism, using the DSM-I, by my principal
child psychiatrist. Since there was no separate DSM Autism entity until
1980, my earlier remembrance, from my mother, that he changed the
diagnosis from Autism to childhood schizophrenia was likely either
inaccurate or she misunderstood the situation. However, perhaps my
mother meant that, contrary to the ideas and expectations of the
clinicians we consulted earlier, the Autistic symptoms of childhood
schizophrenia, as the category was then constructed, were not so
prominent.
Now,
in all fairness, I was generally excluded from the conversations
between my child psychiatrist and my mother. (My father, as per my
demands, was rarely present and kept largely uninformed.) That being
the case, I am unaware of which details in my diagnosis had been meted
out to her. Yet, I can still visualize, when I was about 13, standing
inside the hallway of the main floor within our house while
repetitively screaming to my mother, "Am I a schizophrenic?" Finally,
and vociferously, she then acknowledged it. "Yes! Is that what you
wanted to hear?" "Yes," I sighed, utterly exhausted, and I repaired to
my room.
To
provide some context, my maternal grandmother, Nanny,
had died of cancer, a year earlier, when I was 12. After accidentally
overhearing talk of her disease, I was resolutely instructed by my
parents never to mention it, and its probable course, around her, and I
complied. When I asked whether Nanny knew she had cancer, my mother
said that she suspected so but was not entirely sure. How horrible, I
thought, to be aware you have cancer but to be deprived, by your
daughter, of the opportunity for communication. This approach was,
palpably, quotidian in the 1960s. Yet, I was determined not to let my
mother use it on me.
At
my insistence, the clinical apartheid of my mother and myself was
abrogated, albeit unenthusiastically and capriciously. I vividly recall
that I was, in one of our sessions, disturbed at some comment made by
my psychiatrist to my mother regarding an element of my behavior. When
I attempted to interrupt, he snapped back, "See, that's the
schizophrenia." I was, after all, just
a boy, welcomed only
in silence and subjection, and could have no say in statements made
about me. Indeed, if my routinized impuissance in our triad was in any
doubt before this disparagement, it was now crystal clear. While yet
callow, I was not dense.
In
fact, virtually all of my social actions, and whatsoever I ostensibly
failed to accomplish in my life, were attributed, ecumenically, by my
psychiatrist to an apparently omnipotent childhood schizophrenia. As,
to Herbert Marcuse, an entrenched class of capitalist elites engendered
a one-dimensional man, so I became, as a constructed objectification of
this psychoanalyst, a transpicuously depersonalized one-dimensional
boy. Yet, antithetical to his fatalism, getting
better, he puzzlingly insisted, was my
own responsibility. Thoroughly
marginalized, my redemption was found only in a temporary extrication
from the system.
Maybe
it was for peace of mind. Perhaps it was simply to resolve a prolonged
dilemma. I am not certain. However, within a week of the Autism
diagnosis in 2007, I phoned my old child psychiatrist for the first
time in 18 years. I was polite, while the encounter itself was, from my
standpoint, exceptionally fruitful. At first, he counseled me to focus
on my future, not on my past, which struck me as more cliché than
practicality. I am unable to so rigorously insulate my life's past from
its future tense. He then assented, ever so appropriately in the royal
we, "Yes, if you were walking into our
office today, we would probably diagnose you with and OCD."
Psychiatric diagnosis, I have reflected, is not only more art than
science; it cannot be legitimately extracted from its sociohistorical
purveyance.
Years
earlier, in a 1989 telephone conversation, my child psychiatrist had
affirmed that I "obviously" did not have schizophrenia but,
alternatively and yet inexplicably, some type of "developmental delay."
Prospectively, the DSM-IV, the first version of that manual to subsume
Autism, would not be published for another five years. In any event,
although I was, in a way, grateful for his candid admission, I was also
now unable to make sense out of my assorted odysseys and, for years to
come, felt as if stranded, enigmatically, in a neurological
limbo. Whether in television shows and the
cinema, or in my own life stories, I have never cared for open endings.
After
reflecting on my child psychiatrist's words, the only conclusion I
could reach was that I had been dreadfully neurotic or, in current
parlance, that I had an anxiety disorder. Indeed, in light of the
subsequent diagnosis of comorbid OCD, this assessment was both
impressively accurate and radically incomplete. My 2007 discussion with
that psychiatrist resulted, for all intents and purposes, in a second
medical opinion, and, since his views were consonant with the
perceptions of my present psychiatrist, they became eminently adaptive
for me. Indeed, from that moment on, I have felt genuinely at peace
with myself.
Well,
then there were the seizures. I had one tonic clonic, or grand mal,
seizure in 1982 and a second in 1985. As a child, however, I would
frequently lay down on the floor and exclaim, "It's happening," with
concurrent feelings of disgust, a bad taste in my mouth, and a mental
image of crumpled and burning paper. Although these symptoms were, if I
recall correctly, imputed to my "schizophenia,"
a neurologist I consulted in 2007 advised me that they were, in
actuality, simple partial seizures. Either way, I am uncertain which
was the more deleterious, the seizures or my mother's shaming
trepidations over them.
The
left frontal lobes, the area of atypical electrical activity spotted
on my often-repeated electroencephalograms (EEGs),
are connected with empathy and with rapid and efficient mentalizing.
While notations on my neurological reports do
indicate a seizure disorder, a currently influential viewpoint, in
citing correlations of anomalous frontal lobes with the Autism
spectrum, posits that variations in frontal lobe development can be
associated with some emotional control difficulties, a propensity to
become upset at small changes, compulsivity, intransigent approaches to
problem-solving, and black-and-white thinking.
Breaking
my silence and, to borrow an expression from the LGBT (Lesbian Gay
Bisexual Transgendered) community, coming
out as an Autistic have provided
considerable solace. However, as I was growing up, my now antiquated
diagnosis of childhood schizophrenia, as well as my psychiatric control
in general, were, by my steady and stern directives, maintained as the
closest of family secrets. If I merely suspected,
justifiably or not, that outsiders may have been apprised of my
condition, I would become absolutely livid and often
throw one of my customary and ritualized temper tantrums. Properly
staging my self-presentation had evolved into a full-time, and largely
ineffectual, occupation, even as my oft-repeated attempts to
dissimulate the diagnosis were hindered by an unyielding social
inaptitude.
For
me, life has been a succession of culture shocks. What should be
prosaic and native is, instead, occasionally exotic. In many ways,
blending into my diverse social settings has often been accompanied by
the uneasy feel of an acculturation through ethnography,
as I will strain to comprehend the peculiar values and norms of my
seemingly antipodal surroundings, while attempting a bit of mindful
fluency in its foreign tongue. The pages of the phrase books are
ever-present in my thoughts. No matter how well I can now function in
most situations, some
still, customarily, bring with them the noir ambience of the alien.
As
far back as I can trace my Autism is to my father's maternal uncle. He
died when I was only a little boy, and I scarcely remember him. He was,
I have been told, regarded as an unusual individual. A bachelor, he
worked as a mail sorter and spent his entire adult life with his sister
and brother-in-law, my paternal grandparents. Whenever I would visit, I
sat on his lap, while he seemed lost in a world to his own. He was
always in the same chair, next to the living room window, and he was
constantly fiddling with one thing or another. The diagnosis
did not exist in those days, and my knowledge of him is scant.
My
mother, a teacher aid and the oldest child of a struggling grocery
store owner turned food salesman, pressured me into permitting her to
toss my beloved G.I. Joe
down the incinerator. Given my attachment to it, I suspect she meant
well, but such fervent bonds to objects, as to my ventriloquial knee
figures and to a polished agate stone I owned, are commonplace among
Autistics. Holding the agate and looking at ivory were immensely
pleasurable. Consequently, whenever my family went
on vacation, I wished for my most treasured possessions to come, too.
If refused, seeing them again, upon returning home, was like a family
reunion. I still
mourn for a Tommy 7
(TV show) clown nose, stolen by a neighboring fellow preschooler.
The
aggregation of moments through my lifespan, primarily over the course
of my junior years, has been vexed with manifold contradictions.
Relentlessly, in my boyhood and, at times, into adulthood, I was
badgered by my mother concerning my egocentricity, which is
an Autism trait, and told, time after time, that I cared for no one but
myself. If, she insisted now and then, my coreligionists became wise to
my conceit, they would shun me. Yet, in attempting to be empathetic, my
stiffness and plasticity left me exceedingly frustrated; and despite
being verbose in deportment, I hardly ever seemed to utter the right
words.
Frankly,
as I have systematically mulled over my relations with my mother, my
infuriation and befuddlement concerning her frequent denigrations, her
impatience with my stuttering and my pacing, her demands that I leave
her alone, her accusations of deafness when I tuned her out, her
outrage at my paucity of benevolence, and even her well-intentioned
proddings to make me smile have, in weaker moments, turned to
resentment. "How could I have given birth to such a selfish person like
you?" They are words etched, even embedded, into my consciousness and
betray a distinct nescience to the Autistic implications
of my early diagnosis. Except for when she entertained company, she
seemed to be continually exasperated with me.
I
loved my mother irrespectively, and I craved her reciprocation.
Nevertheless, I believe I did, over the years, internalize her
emotionally abusive accusations and tirades. As my
all but constant state of deliberation trained, from time to time, on
my mother's outbursts, on whether I truly
was an abhorrent person,
I could not figure out what had gone wrong. Why, considering my general
spiritual orientation, my devotions, my meditations, and my studies of
religious texts, was I still so self-centered? I wondered whether I had
failed to live up to my Lord's expectations, or if, perhaps, I had
embraced a false belief system.
Early
in 2009, Vinny, who has been my closest friend since 1971, recounted a
story in which my mother, when I was still a teenager, expressed her
misgivings regarding my future as an adult. She was, Vinny reported,
apprehensive concerning my means of subsistence once unable to return
to the family home. This anecdote of her affection, really quite
understandable given the exiguousness of my Autistic adaptation at the
time, called to mind the abundance of discrepancies between my mother's
private relationship with me, dominated by aggravation and
disparagement, and the manner in which she presented that relationship,
and her feelings about me, to others.
Kinship Diagram
![]() In
hindsight, I have attempted to be understanding. Setting my own issues
off to the side, my family maneuvered through
multiple obstacle courses. To cite one of them, our lives were left
unsettled by my mother's insomnia. It was, I began to surmise within
months of my own diagnoses, a disturbance secondary to OCD, which also
exhibited in her phobias of heights and escalators, and hyperacusis.
Obsessions on noises – whether anticipated, real,
or imagined – permitted her a modicum of sleep. A
near total silence was demanded after her bedtime,
but even with the quiet came complaints and a perennial crankiness.
I
willingly concede that living with certain individuals on the Autism
spectrum can be arduous. In addition to myself, and the stresses and
strains which my Autism imposed upon my family, my mother contended
with my father, an eye care professional and the oldest child of a
semiprofessional boxer and, subsequently, a successful grocery store
owner. For his poor grasp of social nuance, dazed
countenance, blindness to subtext, clumsy speech, inelegant and
unremitting naiveté, and ignorance of current fads and fashions, I
coarsely described him, typically in frustration or anger, as having
"something missing." Graceful speech was generally
possible for him only in highly structured situations, as with his
optical patients.
My
father's brother, alleged by his wife to be very weird, told me in a
March, 2008, phone call that their maternal uncle, markedly after
retiring, and my father were both decidedly odd. My mother was a
talented woman who, if not obligated to help support her family during
the Great Depression, might have become a physician. When she expressed
an interest in marrying my father, her entire family, her cousin
informed me, thought she had gone stark raving mad. To be fair, he was
a handsome young fellow, and, admitting his habitually idiosyncratic
and often bizarre mannerisms, he could even be slightly charming at
times.
My
father thrived on his routines and rituals, threw fits when our family
disrupted them, despised certain clothing fabrics, and was captivated
by counting, waiting by the window, and being on time. Indeed, the
latter was so much so that, whenever he got his way, we unfailingly
arrived at events well ahead of schedule. Privately, he preoccupied
himself with science fiction novels, "the garbage," the science and
technology magazine, Popular Mechanics,
and his huge and omnipresent collection of American flags.
Then, truth be told, even while the hospital staff was busily caring
for my debilitated mother, my father droned the hackneyed tales of a
medic in World War II.
After
first hearing about Autism in 2004, I immediately thought of my father
and hypothesized that he, but not myself, was an Autistic.
That same year, while my mother laid dying in her hospital bed, I
broached the possibility of my father's Autism with my parents'
physician, but he was, at the time, principally unfamiliar with it.
Ensuingly, owing to my father's various problems with decorum in his
new assisted living community, I phoned the physician, in late 2007,
and asked him to arrange for a psychiatric assessment. While the
process dragged on more than I would have preferred, eventually, my
father was assigned a psychiatrist.
In
February, 2008, my father's psychiatrist told me he
has Autism symptions and (with mixed results) is treating him,
pharmacologically, as an Autistic. Although a formal
diagnosis of Autism, the psychiatrist continued, is, due to the
aggravating effects of geriatric dementia, no longer possible, he
provided, in our two conversations, enough of a diagnosis to suit me.
Suddenly, in a flash, years of indefatigable turmoil with my father
were elucidated. Still, notwithstanding our common Autism, an
undeniable asymmetry, whether in avocation, capability,
or personality, has outdistanced, in considerable
measure, any proportionality.
Neither
my parents nor I had adequate emotional control. A continual fracas
revolved around my father's virtually incessant emotional, and
occasionally even physical, abuse of me. Now and again, my mother would
alternately threaten to put me up for adoption or to leave my father.
As she acknowledged to me over the years, she remained with him for
financial reasons, for which I never entirely forgave her, but never
wholly forgave him. Looking back, I attribute these hapless plights to
a mutual frustration of two social misfits. We had precious little
insight into the norms of propriety, but we each knew how to go for the
jugular and make it really sting.
For
as long as I can remember, my father, like myself, has had
gastrointestinal problems, and its foremost symptom was a loathsome
flatulence. Whenever he neglected to spray the bathroom disinfectant,
the entire area came under a tacit quarantine. Since, to boot, he
generally used the upstairs facilities in the house, which were
directly adjacent to my bedroom, this lone issue, even though
superficially minor, only served to exacerbate any coexistent tension
or enmity between us. Subsequently, with his advancing age, he has,
regrettably, developed both irritable bowel syndrome and an
incontinence of the bowels.
I
am doleful that my mother died prior to the revelations of my father's
and my Autism. A mere knowledge of it would, quite possibly, have
ameliorated her relationships with both of us. The tremendous stress
that my father's Autism had produced in my mother, which she generally
believed to be intentionally bad behavior, may, I have sometimes
speculated, have contributed to the stroke which began the long,
downward spiral in her health. Over the two years after the stroke, she
also wondered, as did I, why I did not spend more time at her side, but
the sensations, and cessations in routine, would have been unbearable.
Nonetheless,
I probably do not languish over death, in the conventional sense, as
much as most persons, if there is such standardization. Perhaps I
thwart intense empathy to avoid being overwhelmed, but I am only
guessing. In late 2004, when my mother died, following two lengthy
years of suffering, I was grateful her pains had ended, and have
occasionally missed her, but I did not mourn hardly at all. At that
time, about two years prior to my new diagnoses, my mothers accusations
about my selfishness, so long ago, came back to haunt me briefly.
As
to my father's death, I was informed of it, over
the phone, on the afternoon of December 15, 2008. He died that morning
of, as they say, an apparent heart attack. Given that his quality of
life was minimal, and he was barely conscious while he was awake, his
passing was, in many respects, a blessing. Had he lived much longer, he
would, according to his physicians, begin to experience tremendous
pain. Still, knowing what I came to know about my father's Autism and
my own, I had accurately predicted that I would grieve more at his,
than my mother's, passing. Yet, by the same token, perhaps my sadness
reflected the realization that both my parents, those who raised me,
had left this world. It is a strange sensation.
At
my father's funeral, only two of us addressed the congregation. Given
the rabbi's preference, fearing an extreme emotion from family members
which would prevent others from making their tributes, a friend spoke
first. In amazement, I listened as this friend described a very kind
man who was, by all measurements, a complete stranger to me.
Subsequently, in my short, rather matter-of-fact speech, I referred to
my father's physical and emotional abuse during my childhood, having
once hated him, becoming closer in recent years, and, finally, feeling
a connection from our shared Autistic diagnosis.
Nothing
in life is ever perfect. If we imagine otherwise, we will, sooner or
later, be jarred out of the delusion. I reject the trendy psychobabble
about people doing their best. Since I have frequently failed to
perform as well as I might, it would, I long ago concluded, be absurd
for me, out of mere expediency or a desire for closure, to expect a
pristine moral infallibility from others. Although I cannot say my
parents have always done their best, neither can I claim it for myself.
What binds us together is that, in my genetic and social inheritance, I
own both
my father's Autism and my mother's OCD. I am their looking glass.
The
unceasing intimidations of my formative years are far too abundant to
enumerate here, but I will provide some background. Outside
of my family, I preferred the company and conversation of adults to
playing with other children. Among my peers, I routinely confounded
kindness with bullying and bullying with kindness, even as, in defiance
of all my mother's urgings, I grew increasingly more solitary. On
account of putting on my mother's makeup, contrary
to her wishes, to cover my facial scabs, my
top-buttoned shirts, my butterfly collars, my briefcase, and my
unfashionable accoutrements galore, not to mention my stuttering, my
rapid speech, and my generalized penchants for peculiarity, an
anxiously anticipated bullying or teasing was repeated well nigh
diurnally and almost like clockwork.
I
had little comprehension of the prevailing tastes of my cohorts and, as
a consequence, donned whatever attire seemed, to me, most rational.
Since I despised the press of a wallet against my skin, I attached one
of those green bicyclists' pouches to my belt. Although it was visibly
soiled, I saw no point in having it washed. How would cleaning the
pouch, I reasoned, improve its overall function? Although the teasing I
endured could have, in this one respect, been easily nullified by no
longer wearing it, I, for whatever reason, never connected the dots.
Similarly, in the early years of high school, I frequently clipped a
few religious buttons to my shirt and trousers. With barely a shred of
social discrimination, pragmatism overshadowed common sense.
I
was, discounting my usual oddity, well behaved, but my fourth-grade
teacher, who must have been familiar with my psychiatric record, was
evidently provoked by certain of my eccentricities. Along these lines,
I once, perhaps wrapt in some improvised abstraction, politely asked
her to repeat a question. She pulled back on my left earlobe and
shouted it into my ear. Being an inordinately sensitive child, I felt
totally humiliated. When I arrived home, I cried to my mother who, I am
grateful, complained to one of the school's officials. Still and all,
the next year, my former teacher would be promoted to assistant
principal.
In
the fifth grade, walking to and from school, I began focusing on a
voice, slow in meter but mellow and deep in tone, inside my head. I
recall asking myself whether I was losing my mind. Although I was aware
that the voice was fanciful, and I controlled it voluntarily, it did,
in fact, do little more than to recite my name over and again. In
review, the unwise divulgement of these inner imaginings to my inimical
psychiatrist may have reaffirmed his earlier diagnosis of schizophrenia
which, in turn, culiminated in my being committed. Sorrowfully, I only
read belatedly, in 2007, that obsessions on thoughts can be indicants
of OCD.
I
was only 11, and my first time away from home was as a state
hospital inpatient for two grim months.
The place had an awful turpentine smell and, as I imagined it, the aura
of a prison. I was, in retrospect, unsuitably
delivered a series of electroconvulsive therapies (ECTs). While
painless, I recall being strapped down, drugged, and, in my
peregrinations back to the ward with Mr. Watson, for me a grounding
ritual, becoming lucid. On the one day he was busy, being escorted by
another man was severely discomposing. I had bonded to Mr. Watson, and
I would inquire about him, on his days off, from the other attendants.
One
of the more burdensome side effects of receiving ECTs is, quite
frequently, varying lapses in long-term memory. In the face of months
of nearly total amnesia,
I would arrive home, whether for a weekend stay, only after the
treatments were completed, or at the conclusion of my hospitalization
period, and fail to recognize practically anything in my surroundings.
The overriding exclusion was, through it all, that I never forgot my
parents; and they were forewarned I might not recognize them
immediately. However, when each weekend home had terminated, I became,
in anticipation of resumed lonliness, inconsolable.
To
reiterate, the major problem was in psychiatric construction. Given an
insufficiency of research into Autism, the boundaries of the
schizophrenias had been demarcated far too broadly. Consequently, ECTs
were futilely administered to individuals with Autism and, perhaps, a
secondary or aggravating condition, such as my OCD. Barring blatant
misdiagnosis, such a tragic state of affairs is, in the twenty-first
century, unimaginable and could only be attributed to the most
horrendous malpractice. Yet, lamentably, I am not alone and have
interacted, online, with others, including the son of an
Autistic man, about my age, who suffers a continued memory
loss from that interval of his childhood.
Sadly,
I witnessed injudicious beltings by all
the attendants in my ward. Even Mr. Watson, who treated me kindly and
was tipped by my father, flagellated others. Mercifully, I was beaten
only once. After I told my parents, my father threatened the woman.
Consequent to the reprimand, I received only the occasional dirty look.
If the criminal battery by those monsters occurred today, and not in
the psychiatric dark ages (1967 to be precise), I am fairly confident
that the majority of them would be serving time. I later protested when
events prior to the ECTs were discussed and became agitated while
driving past the hospital.
Ensuant
to a castigation by my dreaded and arrogant child psychiatrist that,
absent some rectification of my illness,
he might once again have me committed, as if I were to blame, I
methodically and assiduously hid my thoughts and feelings from him. I
also persistently pleaded with my mother, who sadly liked and trusted
him, not to
report certain episodes. Even as a preteen, I recognized his threat to
be counterproductive and diligently worked to defeat it. What is more,
these difficulties had worsened, in my mind, after his brusque
repudiation of my accounts of the abuse. Much as my mother interceded
to support me, I remain doubtful whether, in his hubris, he gave them
any credence.
By
the summer following my hospitalization, I had turned 12. I spent one
homesick month at Ramapo Anchorage Camp,
now Camp Ramapo,
in a luxuriant facility for special needs
children in rural Rhinebeck, New York. (Supposedly, I had consented,
but I did not recall.) Besides learning how to swim, I devoted as much
time as possible to ritually wandering from end to end of the camp, by
myself, and rowing around the lake. The multitudinous hours I lingered
alone aboard those boats were immensely pleasurable. As usual, some of
the boys bullied me, but I was clueless about how to associate with
other kids anyway.
The
camp counselors, disgruntled that I kept mainly to myself, insisted
that I participate in some group activities, including softball. One of
them, apparently acquainted with my psychiatric profile, expressed
surprise, though pointedly no less than my own, that I had played
reasonably well. Not to let him get the better of me, I incisively
retorted, "Well, I may not like it, but I can do it." "You are smarter
than me," he replied. When my parents arrived, I was astonished, given
my well-rehearsed litany of complaints, that they inquired if I wished
to stay for another month. Without hesitation, I inexorably declined,
and we headed home.
More
precisely, we were driving to our new
home on suburban Long Island. I had visited the ranch house before, but
only as we rode from place to place with various realtors. As I
subsequently discovered, my endless victimization was the major reason
for the move, and it was accomplished while I was at camp. Since I was
completing the fifth grade, had we remained in New York City, I would
have been bussed to my new middle school, and my parents were
understandably concerned over how I might be treated. Although I was
hopeful that, beginning afresh, I might at last be accepted, my
optimism, I soon learned, would be unjustified.
I
only attended my new suburban elementary school during the sixth grade,
since, the following year, I would be transferring to one of the
district's junior high schools. As my homework for Mr. Galluzzo's
sixth-grade class, I penned a poem, morbid and melancholy, and I read
it out loud. Even while other students giggled, Galluzzo appeared to
genuinely like it. "Being able to write like that takes real talent,"
he asseverated. After some serious consideration, I rejected the notion
that the poem was self-referent. However, more than I would care to
admit way back then, its trenchant verses had encapsulated my abject
wanness and estrangement.
A
boy of youth was white with fear.
His
death he thought was growing near.
In
tears he sat right by the clock.
Awaiting
till it came to stop.
His
mouth was dry.
His
feet lie still.
He
listened, numb and clawed with chill.
He
slowly rose, all crushed and sad.
That
all the earth stood up and stared.
The
angels sobbed, the devils gay.
A
big dark cloud then cov'd the day.
But
then more fright came to the lad.
The
clock of death was going mad.
It
turned at thrice the speed of time.
Then
four, then five, then eight, then nine.
It
then, yes, then, came to a stop.
But
then the boy just smashed the clock.
And
there it ended.
With
a tock.
A
year later, in the seventh grade, as I waited in the cafeteria line, I
stood up to a boy my age, among my inveterate tormenters, and refused
his demand to cut in front of me. After slamming me
into a wall and breaking my sternum, he was suspended for no more than
a week. I endlessly worried he would take revenge, but, for the most
part, he avoided me. Some ten years afterwards, he saw me on a bus. As
it turned out, we were both students at the same graduate school. He
did not apologize, not that I had been counting on a mea
culpa, but he was
cordial and, in an indirect manner, may have sought to make amends.
In
that same grade, a boy who, using the seating chart, sat right beside
me in one class seemed to derive a sadistic gratification from
repeatedly kicking me in the leg. Fearing retaliation, however, I
complained to no one. This student was among the school's few
evangelicals in a disproportionately Roman Catholic suburb with smaller
Protestant and Jewish populations. Before class started one day, I
asked him whether he thought Jesus approved of his behavior. He glanced
down, appearing momentarily disheartened, but he responded with,
"That's not what Christianity is about," and the persecutions resumed.
As
a ninth grader, I began to stay home due to nervous stomach aches.
(Tests for ulcers were negative.) The perpetual bullying had exacted
its toll. I was physically and emotionally spent and consumed by
anticipatory anxiety. At the time, I can recall, I simply wished to be
left alone in my room. In retrospect, I believe that I was, quite
possibly, experiencing the symptoms of a chronic post-traumatic stress
disorder (PTSD). Unfortunately, there were not, as best I can
determine, any treatment programs for PTSD in the 1960s. The term, shell
shock, was in use, but PTSD was not coined
until the 1970s.
Due
to my excessive absences, and encouraged by the school, my mother
brought me to an orthomolecular
psychiatric clinic which dispensed megavitamins.
One of their psychiatrists, whom I vehemently
refused to ever see again, described me, while in his office with my
mother, as "obviously very sick." However, on the
first day medication, I noticed that one of the capsules handed to me
by my mother appeared to be an old friend, thorazine. Although she was
impressed with my perceptiveness, I only accepted the neuroleptic
represcription after a rather heated argument.
My
enthusiasm for attending the clinic was nonexistent. On the surface, it
impressed me as medical quackery, and I am now somewhat astounded that
my mother was sufficiently persuaded of its merits. Sadly, as a junior
high school student, I had none of the requisite learning and
background to formalize a reasoned objection. However, in negotiating
with my mother, she yielded to my precondition that my father be
assessed there, too. Once more, I fully expected him to receive a
diagnosis and was shocked and incensed he did not. In those days,
Autistics without overt comorbidities, like my OCD, were
simply quirky.
Some
weeks or months later, my mother, owing to my displeasure, phoned my
former child psychiatrist who, based on the literature, expressed a
justifiable skepticism. Given my present-day access to an extensive
online database, I believe that I have since read the article which
gave him pause. In any event, since he saw no current need for any
therapy, we simply discontinued with the treatments. Needless
to say, the villain had become the unexpected hero. While this incident
could never, in my mind, compensate for his having institutionalized
me, my previous Manichean view of his quidditative evil had,
nonetheless, softened. The surprise was also twofold in that
my mother never presaged me on her plans to phone him.
Concurrent
with the orthomolecular treatments, I was sent to a school
for problem children. As the well-behaved victim,
the change in venue made no sense to me, and, inevitably, the bullies
multiplied. Most of them would today, I suspect, be diagnosed with ADHD
or oppositional deviant disorder. Once, while being
bussed, a boy rubbed nasal mucus on my pants. Later, after
a month or so, on learning that I could now only
test for a high school equivalency diploma, I vigorously protested and
was, reluctantly, returned to my former school. The very first day, a
former drama teacher dismissively inquired, "Why did you come back?"
However, for reasons unknown, though perhaps age, the frequency of the
bullyings precipitously diminished.
Auspiciously,
any ill-treatment and duplicity has, during my succeeding years as a
university student, and even well beyond, become even more sporadic
though no less grievous. As a case in point, I altogether missed the
cues when, in roughly 2004, one of my erstwhile best friends
unexpectedly engaged in conduct, spinning a yarn
about losing five friends due to my behavior
and no longer desiring my attendance at his parties,
which appeared premeditated to drive me away. Considering we had only
recently initiated a project of recording podcasts
together, his chastisements took me completely by surprise, and I
initially found myself being apologetic. My ex-fiance, for her part,
referred to me as "a poster child for nerds."
In
September, 2008, I decided to phone a friend of mine of around 28
years. Although we presently live in different parts of the U.S., we
continued to keep in touch. On this one occasion, however, after
telling him about my Autism diagnosis from the previous year, he began
to procedurally criticize me for a number of situations which occurred
many years earlier. For instance, referring to a
poor woman I dated in the early 1990s, he reprimanded me for not
informing my psychiatrist about my attraction to "trash."
When I expressed sympathy for his poor communication with his sister,
he accused me of attempting to impose my value system upon him.
Predictably,
I picked up on his modus operandi only while reflecting on his comments
after the conversation. During out dialogue, I inappropriately
responded logically to everything he said and, consequently, became
frustrated with the irrationality of his comments. Given my failure to
recognize that, ostensibly, his sole motive was to simply brush me off,
it would appear as though my ability to read
people, at least in this one respect, did not significantly improve
from previous encounters of this type, and, moreover, that I
seem to have considerable difficulty learning from past social
experiences. Still, I wish that these individuals,
instead of displaying such brazen cowardice, would have the moral
backbone to express themselves more straightforwardly.
During
the final phases of my Ph.D. work, in 1983, I audited a graduate
practicum, in the Counselor Education Department, on group
psychotherapies. When the professor, and my pro bono Gestalt and
Rogerian therapist for a while, conducted an encounter group in his
home, people attended from across the U.S. Given my sense of justice
and fair play, I objected after, under the guise of "being real," one
fellow excoriated a woman for being late, and I adamantly refused to
participate in an exercise of designating the person we each most
disliked. Foreseeably, virtually everyone, including the professor,
chose me.
For
years, I feared leaving the protective confines of my closet. Out, once
and for all, I feel fortunate. Some Autistics, in addition to having
difficulties with social relations and with such executive functions as
planning, response inhibition (including temper), and decision-making,
are confronted with considerable intellectual challenges. For them, an
escape into the depths of reason and imagination may not come as
effortlessly. While I struggled,
in my youth, with exorbitant executive problems, I
turned many of them, as an adult, to my benefit and advantage.
Currently, I would contend that I make decisions, plan, and inhibit my
affect with a commensurate ease, or hardship, to most folks I know.
Many
Autistics remain unemployed, underemployed, or poor
throughout their lives, but I have been greatly
privileged to work in a profession which affords me considerable
seclusion, flexibility, and tolerance of my eccentricities.
Yet, I remain cognizant that functioning in most fields extrinsic to
academia might be quite onerous. For
all my problems in developing rapport with my students, issues with
which I still struggle occasionally, I am deeply aware that, given my
social challenges, I would, in the majority of other careers, have
faired far worse. As a teen, most summer jobs were, to me, next to
impossible. I either quit, performed poorly, or was, in one instance,
terminated by a taxicab servicing company.
On
November 21, 2008, I was, following a two-hour laboratory test
conducted the previous day, diagnosed with diabetes. Since my father is
also a diabetic, albeit one who was able to control it entirely through
diet for most of his life, this condition would appear to be the second
one I have inherited from him. I suppose that, technically speaking,
the diabetes now places me into the hypernym,
multiply disabled,
which is defined as persons with two or more disabilities. Nonetheless,
at least for me, the diabetes, when compared with the Autism, is a
relatively light burden. Unlike my father, who frequently attempted to
hide his candy from my mother, I have never been one to crave sweets.
As
I survey the unfolding panorama of my lifetime, in
protocols defined substantively through stagecraft, I call to mind the exigencies
I have consistently faced, some of them profoundly agonizing, which, in
their instantiations, have often appeared tragic, possibly
irremediable, and, especially concerning my own rehabilitation,
I had grown progressively despondent and hopeless. However, with the
passage of time, I accrued colossal dividends from my trying
circumstances, or, if not, I realized some other, perchance fortuitous,
profit. Even setting aside all determinative
speculations, I can hope,
needless to say, that such a well-pleasing
serendipity will be an abiding characteristic of my future.
In
my youth, I had genuine antipathy toward the strong and heart-felt
sentiments which exuded from anyone nearby me. Unable to respond
adequately, even less to identify with the other person's feelings, I
characteristically froze to within a few degrees kelvin and, locating
my point of least resistance, became instantaneously distant and
illogically rational. Whether my interlocutor's passion could be
categorized as positive or negative was beside the point. I had no
baseline to react in a way which most might regard as equal to the
occasion and became overpowered. Yet, even as my own anger and
happiness came quite facilely, I stringently restrained myself from
crying, in public, at the emotions of others, even in the cinema.
These
days, having participated with, and observed, the virtual Autistic
community, I find that there is frequently a sense of understandable
frustration over claims that Autistics lack empathy. Significant
confusions have often arisen due to differences between how medical and
social scientists delimit empathy in their researches and professional
publications, on the one hand, and colloquial usages, on the other. To
humbly set the record straight, as the term is ordinarily employed,
using informal conversation, to denote the human virtue of caring for
others, anyone,
whether she is Autistic or otherwise, can be empathetic.
More
technically, empathy is a myth or a cultural story. As folklore,
empathy presents us with narratives through
which social actors may, under specified conditions, engage with
others. As a multidimensional construct, empathy, like any empirical
variable, must be clearly circumscribed. Research metrics demand a
consistency which is unfamiliar to the average person. In an attempt to
shed some light this issue, I will, through my personal biography,
present two distinct academic definitions of empathy. To begin, I will
discuss cognitive
empathy and take up
the relevancies of methodological empathy afterwards.
Should
I assert that a meager one percent of my book stacks consists of
novels, I would be exaggerating. The majority of volumes, as artifacts
of my rapturous preoccupations, examine religions, social sciences,
languages, and, mountingly, the Autism spectrum. In the cognitive
rendering of empathy, some persons might say that my nearly fictionless
shelves signify a poor theory of mind,
or capacity for intersubjective
conceptualization, by Autistics. While my problems in this area had
been sizeable throughout my childhood and teens, I am much improved
now. I have, from my teaching, become a keen observer.
In
applying theory of mind to my attitudes and feelings with respect to
others, I tend to be concerned for
anyone who has endured suffering, irrespective of my conversance with
them, but seldomly have I worried about
specific individuals. Therefore, as I am refining these terms in the
present context, to care for
people is sympathy. To care about
them is cognitive empathy. I have cared for
my parents as they became dependent, distressed, elderly, and ailing.
In like manner, I care for,
and only sometimes
to a lesser degree, victims of natural and manufactured disasters. Yet,
I am hardly ever, if at all, distraught about
them.
Some
contend that Autistics can rarely lie convincingly. This
proposition relates to theory of mind in that, deficient in empathy,
Autistics may be brutally honest. Indeed, as a youth, I was consumed by
ideals of transparency and equity in others and myself, was forthright
and tenacious in my intolerance for whatever I regarded as mendacious,
nonsensical, or nebulous, and was hypersensitive to authority and
correction but judgmental and critical myself. Among my patented
slogans were, "It's not fair!," "Is that true?," and "But why?" In my
teens, I often unknowingly offended, as a house guest, with my
comparative evaluations on the quality of food.
While
these days, as a ripened college professor, much of my black-and-white
thinking has pleasantly hued gray, my bluntness, especially as a
backlash to antecedent evaluations of injustice or impropriety, may
manifest in a righteous, perhaps occasionally self-righteous,
indignation. Consequently, if I feel slighted, particularly by someone
of higher social status, if I believe that performance expectations
attendant to a circumstance are unsuitable, or if I witness race
baiting, I may, in my response, be quite outspoken. Yet, my sense of
fairness and impartiality has resulted in elections to chair of
numerous groups.
Moreover,
I have regularly sported far leftist t-shirts here in the red
state of Kansas. (If you would pardon this brief aside, I must admit,
given the historical association of that primary color with communism,
to finding the more recent, and presumedly coincidental, attribution of
that particular shade to the Republican Party quite humorous.)
Additionally, when I openly objected, at a college-sponsored retreat,
to selecting an object from the surrounding environment and then listening
to it, I was, unrepentant during a private meeting with the organizers,
effectively barred from future events in the series. To be entirely
pellucid on the matter, I had no objection to the activity per se. My
protest concerned its propriety in a academic context.
On
the other hand, I would, as a teenager, oftimes exaggerate my parents'
success, not to be deceitful for its own sake, but, rather, in order to
make my distraught life appear more stable and, hopefully, to elevate
the minimal level of esteem in which I was held by my peers. While
plagued with guilt at first by my subterfuge, I slowly became
accustomed to fibbing and was fairly
good at it. The stories were believable, not fantastic, and, so far as
I know, most people did
believe me. Although such contrivances by Autistics are
apparently not
all that uncommon, with my higher education, the motivation for
prevaricating was eliminated.
An
alleged deficit in cognitive empathy, in theory of mind, may be the
overarching factor which predisposes many Autistics to logic and to a
detached problem-solving. It is not by accident that Autism has many
times been compared with the mentalities of various Star
Trek series characters, such as Mr. Spock,
the original Vulcan, or Data, the android, prior to his emotion
chip, or Seven of Nine, the Borg, before
surgery made possible a romantic affair with Chakotay. These days, when
an identification with feelings is warranted, I will, rather than
succumbing to my desire to analyze, practice my well-honed expertise at
listening.
By
the same token, in teaching my Social
Problems classes, the only handout I
distribute, a booklet which I wrote in the early 1990s, is The
Sociological Thinking Map which is,
substantially, a road map to logical and critical thinking. The first
section navigates students through evidentiary issues. It also includes
a paragraph on the sociological imagination,
characterized by the late Columbia University sociologist, C. Wright
Mills (1916-1962), as the recontextualization of private problems into
larger social issues. The second section is a guide to some of the more
common logical fallacies, or errors, in evaluating evidence.
Admittedly, I have sometimes prided myself in possessing the ability to
refute an argument, even concerning an unfamiliar topic, simply by
pointing out its logical fallacies.
Expressively,
I have had a proclivity for neologism, and my theorizings have afforded
me reliable media to communicate this predilection including,
frequently, during the long-winded verbal expositions of my youth.
Besides neurelitism,
I have coined, alethionomy
(science of reality), pneumaticonomy
(spiritual science), physiconomy
(material science), and, though I subsequently discovered that others
(including an old, now departed, friend) have employed it, soulology
(soul talk or study of the soul), as well. Some researchers have
claimed that neologistic usages by Autistics are symptomatic of
possessing a poor theory of mind. To me, however, they have been a
means of drawing attention to the ingenuity of my ideas.
Furthermore,
I have discovered, in the wake of my education and in my decades spent
as a professional sociologist, that, though my empathy is not of the
superbly high calibre of many individuals off the Autism spectrum I
have known, it has
appreciably improved over the years. As I have pondered over this
situation, I began to broadly distinguish between empathy, as a
psychological and psychiatric construct, and empathy, as it has been
developed and understood, over the last century, within my own field of
sociology. These constructions of empathy, while not exactly
antonymous, could not be regarded as synonymous either.
Growing
up as a child, I had virtually no empathy for, or understanding of, the
feelings of others. That I lived in my own world was partially a choice
but mostly a product of lacking many of the most basic competencies to
relate to others. Over the years, my adaptations to normative,
so-called neurotypical, behaviors, while certainly far from being
complete, have accelerated considerably. These have enabled me to be a
full-time college professor since 1985, the head of a social sciences
division in the 1980s, and a past president of the Kansas Sociological
Society.
Since
my diagnosis, I have met other Autistic adults my age, from across the
spectrum, who have not experienced similar educational and occupations
successes to my own. Some have been on disability throughout their
adult lives. Others have worked only sporadically. Still others have
had bouts of homelessness. An Autistic woman I met online once remarked
to me that, although many Autistics she has known have become
economically successful, none, or virtually none, had the severity of
problems I did as a child. Consequently, I have reflected on the
reasons for my accomplishments.
I
suspect that, whatever empathy I may now possess has been developed
from two distinct sources: my religion and my education as a
sociologist. It is difficult to say which of these two has been the
greater influence. Their influences on me have been quite distinct.
However, if I were compelled to choose between them, my first
inclination would be to select the religion I joined. While I did not
begin my graduate studies in sociology until I was 22 years old, I
embraced my religious faith at the age of 14. By the time I was a
graduate student, even an undergraduate student, I had already
experienced considerable improvements in this area.
Through
my religious involvement, I developed a genuine concern and love for
others. It was in that context and in the cultivation of intense
interpersonal sentiments, that I first developed empathy. This
process has steadily increased up until the present day. My
opening up to others and their lifeworlds has been a product of my
prayers and devotional meditations. Through my religion, I served
others even when I did not wish to do so. Gradually, an awareness, like
an inner light rising, developed within me. God met me where I was, as
an autistic person. From that place, He then gently drew me to Himself.
Proceeding
to the more mundane, in the sociological glossary, the German verb Verstehen
(to understand) has, substantially due to the influence of the German
sociologists Max Weber and Georg Simmel, acquired a connotation of methodological
empathy. Verstehen does not depend, for
its successful implementation, on a putatively neuronal operation, nor
does it rely upon the emotional discernment of theory of mind.
Limpidly, it is not a hard-wired
neurological trait. Verstehen is, rather, the bracketing
of one's own values and beliefs and the subsequent examination of
another culture, or of persons and artifacts of that culture, within
that culture's particular
and lived-in
contexts. Verstehen is, approximately, cultural relativism.
As
a cultivated
methodological praxis, Verstehen can, much like numerous other
dimensions of social scientific research strategy and design, be
taught, learned, and eventually implemented. Whereas cognitive empathy
requires a susceptibility to tone of voice, posture, kinesics (body
language), and proxemics (spatial distance), Verstehen principally
demands a willingness to abandon ethnocentrism and to deferentially
approach another culture through its own social constructions and
histories. Practically anybody can practice Verstehen. Theory of mind
presents no critical impasse.
Previously,
my worldviews, such as Neoplatonism, were my windows to the universe.
Perspectives other than my own were to be deprecated and dismissed,
assuredly not to be examined and penetrated. Even in journalism school,
while I was an undergraduate, a sequence of think
pieces I wrote prompted one of my
professors to insist that I produce a standard news article. My boredom
with regular reporting, and my unrealistic intention to become a
columnist, is what at first induced me to pursue graduate studies in
sociology. My minor for the Bachelor of Arts in Journalism had been
sociology and English anyway.
It
was, as a graduate student, that I encountered Verstehen. Sociology
taught me about Verstehen, and, in addition to my religion and faith
community, it was through Verstehen that I have approached cognitive
empathy. As strongly as I resisted, I could no longer be engrossed only
in my own ideations. Although I wished to write my Ph.D. dissertation
on my own religion, as I did for my M.A. thesis, I was talked out of
it, as potential employers might question my objectivity. So, in place
of my religion, I chose pentecostalism. By immersing myself in the
lives of pentecostals, in my methodological empathy, I had further
compensated for a lack of cognitive empathy.
Besides
Verstehen, my intellectual conversion,
to borrow Bernard Lonergan's term, from essentialism
to social constructionism has been instrumental in my compensations.
As, initially, a Neoplatonist and, subsequently, a critical realist, I
espoused the existence of universal essences, or ideal forms, and,
therefore, doubted the cogency of independent human will and agency.
Presently, however, as a social constructionist, I consider
transpersonal essences and absolute, axiomatic truth claims to be no
more than nominal categories, susceptible to deconstruction, even while
I scrutinize these relative thought or social systems with my
intentionally acquired empathy.
Analyzing
the diverse morphologies of empathy vis-a-vis the Autism spectrum might
yield, even on its own, some demonstrable benefit. From my informal
observations of Autistspace,
my term for the zone of cyberspace dominated by Autists, sociology is
not among the more widespread occupational or avocational choices by
and other Autists. Academic majors in the hard sciences,
computer programming, mathematics, and psychology surface with
considerably greater regularity. Yet, if Verstehen, which was rooted in
the epistemology of a rationalist liberalism, and social
constructionism were salutary, indeed invaluable, for my own affective
development, then perhaps other Autists, especially those at ease with
logic, would find them to be similarly serviceable.
Finally,
with regard to my empathy, intrinsic to my personal life philosophy has
been the view that harmony, both in terms of an individual's ego
integrity and modes of social interaction, can be facilitated through
the progressive attainment of an integral balance between the cognitive
and affective aspects of one's lived-in experiences. This conscious
enterprise together with my deeply held sentiments of loving-kingness
toward others, and their deliberate cultivation into acts of altruistic
benevolence, have assisted both my intrapsychic development and my
accommodations to a neurotypical society.
Behavioral
intolerance, like those based on race and other differences, should
be openly and unambiguously censured. All
quiescence is acquiescence. So, in my own
story, the ignorance of the numerous, often nameless, individuals
concerning both my Autism and my OCD is not only a feeble excuse for my
years of mistreatment. It is irrelevant. Indeed, I myself had a clouded
and distorted view of the plethora of issues I faced. An ubiquitous
haze enveloped me until I was 51 years old. Clarity was then introduced
only
through the diagnosis. It was as if a fog light had been switched on.
The brume abruptly dissipated.
Through
my musings on the nearly ceaseless terrorism
of my childhood, I had gradually constructed a conceptual model of
institutionalized and internalized oppression, but I was powerless to
entitle, much less to explain or even describe, it. Given the dismissal
of my original diagnosis, neither my afflictions, nor the ordeals they
so consistently produced, could be usefully contextualized. In short,
without a label,
I was impeded from achieving either personal insight or the shared
wisdom of a community of peers. Toward these twin objectives, the
diagnosis and fellowship with other Autistics have been a
noetic revelation.
Defined
globally, ableism
(British, disablism)
might be encapsulated by reference to a social structure, a system or
set of conventional rules, which justifies or enables actions
detrimental to the differently abled. Notwithstanding that oppression
has been an academic interest of mine for many years, notably within my
Social Problems
classes, I have only recently initiated a reflexive sociology of my own
life history as a text
for ableism. While typifications, such as Kanner's Autism and Autism,
are merely linguistic conveniences, and devoid of essence, they can
often function as helpful tools for private cogitation and personal
development.
I
considered several possible designations for neurological ableism.
Among them, neuronism, neurologism,
neurism, neuroism, and neuralism have, heretofore, each been employed
to delineate particular subject matter. Of two other candidates,
neurologicism impressed me forthrightly
as entirely too cumbersome, whereas neuronormativity squarely embodied
the phonetics of a tongue-twister. Another contender, neuricism, read
more like a neurological disease or malformation. Since neuroelitism,
with neuro- preceding a vowel, is bad English form, I
ultimately, in October of 2007, settled on the appellation,
neurelitism.
Recalling
the writings of C. Wright Mills (1916-1962), a sociologist,
on the U.S. power elite, incorporating the presidency, the Defense
Department, and the corporatocracy, we may likewise observe a
neurological power elitism, or neurelitism, in which a discourse of
normality is constructed through the knowledge and power of the
neurological majority. An illustrative comparison might well be
situated in the ableist species of audism with the sanctioning of the
disentitlement of the Deaf and hearing impaired. While oppressions will
remain uniquely indexical, they can be associated in a grand web
of joint resistance.
The
mainline Autistic self-advocacy movement has, in its promotion of
neurodiversity, many correlative concerns with the identity political
wings of certain other movements. As Autistic self-advocates reject the
pro-cure agenda of numerous, largely parent-run, organizations, so the
intersex
rights movement resists attempts to force a
dualistic prototype of sex on their bodies, the LGBT
rights movement has, consonant with mainstream
psychiatry, dismissed the view that homosexuality is a disorder to be
cured, and the Deaf
rights movement has rejected the proposition that cochlear implants and
lip reading are superior to medical nonintervention and signing. Thus, each
opposes, not only the territoriality of exclusion, but the narrative of
being cured.
However,
the essentialist foundationalism of identity politics has been widely
criticized by an array of academics and pundits from both Right and
Left. Some on the Right consider identity politics to privilege
parochial interest groups over the nation weal. On the Left,
the concept has at times been regarded as a category of false
consciousness, namely, a dilution of efforts to dismantle the
neoliberal hegemonies of global elites for the achievement of perceived
short-term gains.
One
solution to this dilemma, from a somewhat progressive perspective, has
been proposed by Gayatri Chakravorty Spivak. In her recognition of the
fictive character of identities, she at one time discussed a strategic
essentialism in which organizations
representing oppressed peoples would, for the attainment of certain
pragmatic objectives, present themselves as a united front. In other
words, they would address the public as if
they were an ontologically distinct unit. Yet, to me, Spivak's
utilitarian approach bordered on Machiavellianism or realpolitik.
I
agree that identity politics, as generally nuanced, is largely
unsatisfactory. However, by rejecting essentialism, identity politics
can morph into a post-identity politics. Indeed, the online Autistic
community has been bound together by self-identification, not by
diagnosis. Participating in this community entails a presentation of
self, not of one's medical records. Personally, I have many identities,
many selves,
and Autistic is but one of them. Moreover, some members of the
community even consider diagnosis to represent a surrendering of one's
own determinative power to the therapeutic establishment and have, on
that basis, refused to obtain one.
Neurelitism,
as with other oppressive constructs,
is chiefly a collective, not an individual, phenomenon. In truth,
neurelitism cannot only be objectified in the institutions of society,
such as family and government. It can also be subjectified,
internalized, or reverberated, in the consciousnesses of the oppressed,
whether as self-hatred, a lashing
out at others, shame, disaffection, and underachievement, or, in the
affirmative sense evinced in my own odysseys, by an awareness of
neurelitist tactics in struggles for liberation and, with an often
coerced turning inward, an ardent soul-searching and appreciable
accomplishment.
An
everyday modus operandi by which neurelitism, and similarly oppressive
ideologies, function is by means of marginalizing, or othering,
specific demographic categories as outgroups.
If persons occupying the higher statuses within particular social
structures – such as NTs in neurodiversity, males in gender, and
European Americans in race – turn a blind eye to those perceived, for
whatever reason, as different from the norm,
then, in the contexts of power, privilege, and prestige, the different
become the other,
their voices collectively silenced,
and their very presence among us finally dismissed
or ignored.
I
knew that I wanted to be "Dr. Foster" from the first time I heard the
poem as a young child in New York's borough of Queens. Fortunately,
receiving a Ph.D. in sociology has afforded me the opportunity to be
both a scholar-practitioner, a person who not only
examines oppression academically but is actively engaged in combatting
it, and a public intellectual
and public sociologist, one who endeavors
to communicate academic constructions of knowledge to certain publics.
My higher education has provided me with a voice,
and an idiom, through which to express my own experiences with
oppression. Thus, in teaching my Social
Problems classes each semester, I
periodically, when relevant to course material, raise issues from my
own life and personal experiences. From the first day of classes, all
of my on-campus students know that I am an Autistic.
The
fact is that I and myriads of other Autistics, whether
diagnosed or self-defined, have, as a consequence of our
neurodiversities, been subjected to traumatic and sustained abuse.
Healing the scars is heavy labor. This oppression of a neurological
minority, as revealed in the stories we tell each other, conveys an ideology
of neurelitism. Like
homophobia
and psychiatric normalism,
two additional performance-focused social constructions, neurelitism cannot
be explained away as mere individual harassment. Moreover, in
identifying that which is good
with the neurologically normative, neurelitism may
be especially troubling to those Autistics, like myself, with
strong senses of social justice.
Deplorably,
in the frame of popular psychological reductionism, fashionably
promoted on daytime television talk shows, no one can be truly
victimized. Being a victim is purely a mindset,
and apparitions in air castles do not bite.
This subjective idealist epistemology comes perilously close to blaming
the victim for her own victimization. It also conflates two independent
issues. Victimizations should be conceived as objectively measurable
phenomena. However, while clinging to anger might hurt no one but the
victim, whether to forgive can only be an individual decision. Speaking
personally, I have tried
to forgive.
During
my years of maturation, neurelitism was, for me, the
hidden curriculum.
I was bereft of any data on the sociological construction of ableism, a
neologism coined subsequently in the 1980s, but I learned it
nonetheless. Neurelitism, and its impact upon my Autism, has been my
experience. It was, is, a part of me. When I am asked concerning what
has been, or so I am told, the unusual extent of my personal
adaptations into a mainstream society, and my compensations, my
response is inescapably generational. I adapted without knowing I
adapted. I compensated out of necessity. The subject was, back then, never
deliberated.
Initially,
observers often notice the first-personhood of the Autism community.
Many of us will say, "I am an Autistic," and not, "I have Autism." Any
descriptor is limited, but why object when the topic is Autism and not
one's job, religion, or gender? I recall, as a child, proudly
identifying myself as a numismatist and explaining it to anyone who
inquired. In adopting the first person, I am eschewing the
marginalization or compartmentalization of my Autism and attesting to
its integral character. Yet, calling myself an Autistic does not
prevent me, in other contexts, from referring to myself as a
sociologist or a ventriloquist.
So,
to the query, "Am I defined by my Autism?," I might coyly
respond, "Am I defined by my Ph.D., by my I.Q., or by my Jewish
ancestry?" Each of us is a mosaic. Autism is a guidepost to where
certain of its tiles may, in some of us, be pinpointed. Considering
that, due to my profession, I have been compelled to minimize my
Autistic traits, much of what is recorded
in this chronicle, I had long forgotten. By a,
veraciously, self-centered
reminiscence on this one back corner of my
mosaic, memories, some painful, recurred to me in the composition.
Writing has, for me, always been a meditation and self-disclosure.
My
preference for capitalizing Autism
and related words has likely
stood out. However, just as one is
a Gambian, one is,
in the first person, an Autist or Autistic. One does not have
Gambia or Autism. This approach to capitalization, which is already
being practiced by some Autists, has long been in use within the Deaf
community. As explained on the Alternative
Solutions Center blog:
Similarly,
capitalizing Autism
and its forms emphasizes the culture of Autistics. While the Autistic
community is certainly heterogeneous, or diverse, in its viewpoints on
a host of issues, few cultures, even those which have functioned under
extraordinarily rigid, authoritarian, or totalitarian political
systems, have ever achieved a true consensus or unanimity. For this
reason, a culture may better be appreciated, not as a system of uniform
or mechanical behaviors, but as a way of life or as a symbolic toolkit
for resolving problems and addressing existential challenges.
Furthermore,
in accordance with the person-first movement,
I am an individual with
Autism. However, in the autism-first
movement, I am
an Autistic person or an Autist. Consequently, in person-first
language, my Autism is a medical condition, an undesirable, and hence
de-emphasized, appendage to my personhood. In Autism-first language, my
Autism is
among my different selves, one of the many subjective conditions, or
lifeworlds, in which I think, feel, and operate. Hence, I, and not the
medical and psychotherapeutic establishments, has the authority, or
legitimate power, to define myself and, to the degree I have chosen, to
present that self to others.
Human
cultures do not arise without precedent. Their development, whether
systematic or haphazard, occurs within historical frameworks of
interaction and adaptation. Social groupings are, as sociologist
Anthony Giddens has observed, ongoing
accomplishments. That is to say, as
willful agents, we need not be passive objects of grand cultural
processes. Instead, we can, individually or collectively, express our
voices concerning the maintenance, modification, or deconstruction of
contemporary cultures. We can also become actively engaged in building
new and emancipatory ones grounded on human rights.
A
culture, in its nonmaterial aspects, incorporates a population's
language, values, and norms. With respect to the first of these,
language, cultures and subcultures are defined, in part, by a
characteristic semantics or lexicon. A stranger on an Autistic
discussion forum might have difficulty following most conversations.
Moreover, opposition to curing Autism is, perhaps, the most ubiquitous
value of the self-advocacy Autistic community. In establishing
territoriality and appropriate social norms or rules of conduct, this
value serves to differentiate self-advocates from many largely
parent-dominated groups.
Cultures
and subcultures move through stages. Given that Autistic online culture
remains in its early phases of development, it would be patently unfair
to compare its nascence with online culture as a whole. Similarly, it
would be unjust to compare online culture with the cultures of Western
industrialized countries. In other words, culture is not an object
which a population "either has or does not have." It is, as a
lifeworld, defined by its process – the lived-in experiences of a
community. Perhaps, in my own case, that subculture is, considering my
neo-Marxist preferences, closer to Theodore Roszak's construct of a
counterculture.
Personally,
when I first connected with other Autistics online, I had to learn the
significances of various terms: neurotypical (NT), aspie, curebie,
nonspeaking autistics (and not "nonverbal"), and so forth. I also had
to study the values (and value debates) and norms in the online
Autistic community. I have been involved with computers for many years
and ran a dialup bulletin board service (or BBS) on a dedicated line in
pre-Internet days. Even though I watched virtual culture, in general,
develop, becoming a part of online Autistic culture required me to
discover a new vocabulary, value system, and normative framework.
Howard
Gardner (1943-present) has authored his
continuing series of volumes on multiple
intelligences. Although apparently
developed separately, an ostensibly similar concept, neurodiversity,
expresses an appreciation, on the part of many Autistics and others,
for a model of multiple neurologies. While
neurodiversity, as a segment of the earth's greater biodiversity,
presents us with various human predispositions, the representation of
typicality and disorder is human categorizing.
Take
the oppressive and subjugating medical
model of disability
which labels, even
tacitly promotes, disempowerment, aiming at defining
who is normal and repairing all the rest. The emancipatory social
model of disability,
however, values collective empowerment and enfranchisement over
compulsory cures. An Autistic may seek out palliatives, medically or
otherwise, without necessarily wishing for her
neurology, which contributes cardinally to her personalty and
individuality, to be deformed
to the psychiatric touchstone of normalcy.
Consider
that all of us, Autistic or not, are in need of continuous assistance.
We depend on the electric company to power our appliances or on the
bank not to foreclose on our mortgages. Complete self-reliance, in
health care included, is a veritable pipe dream. On the scale of
dependence to independence, each of our lives is a matter of degree.
Hence, the problem is not medicine, per se, but
medicine as social engineering and eugenics. Rather than building more
inclusive human communities, the ideal of the medical model, with its
neurelitist emphasis on fixing
the Autistic, is fitting
her into a respectable
society.
From
the social model,
I deduce a semantics of disability and
typicality. Challenged,
as a construction of disability, is acceptable but insufficient in
scope. My Autism challenged me as a poorly adapted youngster to become,
through my plentiful compensations, a generally well-adapted adult. I
now rarely feel so challenged. However, I frequently observe a
dialectic juxtaposing persons who are, given their tropes
or empirical attributes, differently abled
and typically abled and
a power dialectic, framed around interactive syntaxes, between the differently
enabled and typically
enabled. The second dialectic becomes a
substructure to the first.
Additionally,
by opposing the ideal types of neurodiversity and disability, a third
dialectic can be delineated. In
this light, the portmanteau neurodiversity,
as a largely descriptive
construct, may be empirically formalized, neuroscientifically and
sociologically, into useful categories and dimensions; while
disability, as a relational construct,
would be observed in conjunction with human agents of neurelitism and disenablement.
Comparatively, an individual might, from an intrinsically descriptive
standpoint, be depicted as an Autistic but, from a relational
and an instrumental perspective, not be substantially disenabled
by it.
In
a neurelitist structure, the differently abled and enabled would denote
those on the Autism spectrum and with other developmental differences,
like dyscalculia,
whereas the typically abled and enabled would consist of everyday
persons who are largely accommodated by present rules. Thus, in my own
case, I am differently abled in that my strengths, such as my
sociability, diverge from many typically abled
persons. I had, more crucially, differentlial enablement, since,
relative to the typically enabled,
I once required distinct, and distinctly lacking, support systems. What
I did get was generally oppressive.
Outside
of disenablement as an externalization of disablement, articulations of
disability can be hypostatization.
That is to say, in the uncomplicated act of materially personifying and
implanting disability
inside a statistical category, its propagators might duly become, even
without precalculation, the creators of a disabled other. The category,
once spoken into existence, and outlined, by experts, can be
transformed into a marginalized group of disabled persons. Yet, in
coding for Autism, the authors of the DSM-4 and ICD-10 could never have
predicted that they would be the progenitors of an emergent Internet
phenomenon.
Moreover,
the Autism spectrum may itself be differentially constructed under
these models of disability. Within the medical model, a diagnosis is
one's passport to variegated treatments and, sometimes, an eligibility
for government benefits. Self-diagnosis, while incompatible with the
medical model, can, from a social perspective, provide one with a
previously unattainable sense of identity and belonging, such that an
official diagnosis may even be irrelevant. Viably,
however, strict distinctions may be impossible. Some
Autistics, like myself, not only subscribe to the social
model but are formally diagnosed.
Subjectively,
while my countless perpetrators outwardly buttressed my seclusion, they
unwittingly, though propitiously in the long run, granted me time to
explore comparative religions and theories concerning abnormal
psychology, hypnosis, and Wilhelm Stekel's Interpretation
of Dreams. These preoccupations, wedded to
my punctilious and scholastic manner, opened a wide avenue to
compliments and attention. Once in my new religion, negative, disabling
social reinforcements gradually gave way to positive, enabling ones,
which may partially explicate my grownup successes. Perhaps comparable
enablements reveal why many Autistics pursue pivotally
cerebral occupations.
Some
Autistics object to the term, disorder,
and its often euphemistic, but virtual medical synonym, syndrome,
in the descriptors, disorder,
syndrome,
and Autism spectrum disorders.
Given my personal narrative, my sociobiography,
and the incalculable miseries I underwent, I share their concerns, feel
a sense of commonality and camaraderie emerging out of certain
discussions, and often identify with, sometimes even mirror, their
experiences. Considering that victimization is all-around unremarkable
to a legion of us, these labels pile innumerable insults
upon untold preexisting injuries.
To
be honest, as someone once diagnosed with childhood schizophrenia, in a
generation when that characterization may have rivaled the current ADHD
pandemic,
I would have been highly relieved by essentially any
other unmalicious label. Although I favor as much self-determination as
possible on issues of psychiatric, occupational therapeutic, and other
treatments, I am also, as an academic, interested in hearing the
perspectives which contrasting voices, including from social
constructions as seemingly incommensurable as the "pro-cure" and
"anti-cure" movements, may contribute to a practicable dialogue.
Furthermore,
several writers have proposed a more wide-ranging Autism spectrum. By
augmenting the metacategory, symptom complexes displaying similar
problematics in executive functioning and other
areas can be consolidated. In addition to Autism,
Kanner's Autism, and pervasive developmental disorder – not otherwise
specified (PDD-NOS), an expanded rubric might incorporate such hyponyms
as ADHD and some type A
personality disorders, such as schizoid and schizotypal, while
adjoining such non-DSM entities as semantic pragmatic disorder, sensory
processing disorder, and, unless judged to be
isomorphic with Autism, nonverbal
learning disorder (NLD). Patently,
labels can
and do
oftentimes matter, expressly to the child or young teen first being
diagnosed. They can also be important for influencing, through a public
sociology, how average citizens and social
policy makers will relate to individuals on the spectrum.
The
question of distinguishing between NLD, originated by
neuropsychologists without reference to the Autism spectrum, and the
more universally utilized Autism diagnosis remains controversial, and
it may also be a case of splitting hairs. Given that even NLD experts
disagree on the utility of distinguishing it from Autism, the chances
of its inclusion in the DSM-V, other than as an Autistic dimension,
would seem remote. Personally, if I were to quibble, I am more
generally more proximate to Autism than to NLD. Although special
interests, which have animated my life,
are not in most NLD formulations, nonverbal challenges are assocated
with both. Indeed, when someone directs me to MapQuest,
or a similar site, I relinquish the map and select the written
directions.
I
read occasionally that Autistics are brain
damaged. Aside from being value-laden,
highly offensive to some, and presumptive of injury, "brain damage"
sets up an unnecessary dualism. Damaged brains imply undamaged ones.
Dualisms are frequently
employed to institute political dominance and self-serving standards of
evaluation. Predicated on whose criteria are Autistics, and
not those with other neurologies, brain damaged? Neurodiversity,
on the other hand, does not presuppose a foreordained set of
neurological categories. Both terms are social constructions, but
neurodiversity is value-neutral and socially inclusive.
With
regard to the Autism spectrum, which can be extended to other
neurological or psychological conditions, all
views of normalcy
are interpretations of observations. The appellative, norm,
can itself designate: a statistical norm
(a mean, median, or mode), a social norm
(a rule of conduct), and, of concern here, a textbook
norm. Persons who satisfy this norm for a
DSM construct are labelled abnormal.
Subsequently, the selfsame specialists who vetted the norm are
privileged to treat those who match its criteria. This circularism
demonstrates the salience of language games, or phrase regimens, in the
social institutionalization of power.
Within
the Autistic community, ostensibly in an effort to devise a genteelism
for normal,
the term neurotypical,
often abbreviated as NT,
has been widely employed. To a much more restricted extent, neurotypicalism
has been utilized by others and, though fleetingly, by myself for what
I am presently calling neurelitism. Neurotypical and its derivatives,
even if improvements over normal, are not without their drawbacks.
Principally, I find neurotypical, when used to exclusively identify
persons not on the Autism spectrum, to be both erroneous, defaulting to
all exceptional neurologies but Autism, and marginalizing, while
neurotypicalism is, accordingly, not only unseemly but stereotypic.
On
the other hand, perhaps most readers would concur that neurotypical
is preferable to normal,
a word which evokes its unsavory antonym, abnormal.
Moreover, considering that we know so little about the possible
neurological etiologies of conditions mentioned in the DSM-IV-TR, both
neurotypical and normal inevitably become substantially informal,
nontechnical designations. Although, for a brief period, I elected not
use the word, neurotypical, after giving the matter more thought, I
have once again adopted it, but only as the opposite of neurodivergent,
referring to all
classes of unusual neurologies itemized by qualified psychiatrists and
psychologists, including Autism. (I actually prefer neuratypical
to neurodivergent, but the latter is already established.)
Through
my vision for a liberation narrative
theology, promoting equitable redistributions
of power has been a core religious praxis. In so doing, I dismiss those
decontextualized hermeneutic methods which disfigure certain scriptures
into a contrived conformity with Enlightenment constructions of science
and history. Instead, the questions I have often raised concentrate on
religious narratives as mythopoeia and, when appropriate, as tales and
prophecies of social justice and emancipation. For Autistics, as for
other oppressed peoples, ruminating on stories of struggle in our own
faith traditions may be inspirational.
The
liberty
of self-definition must be accorded to each individual. As
a boy, I would gladly have kissed the person's hand who offered to
provide me with some hypothetical cure. Now, I would, politely, send
her on her way. The issues, however, become substantially more complex
when discussing the treatment of children or, from a futurist
standpoint, prenatal genetic engineering. Here, I believe that medical
ethics should, with due regard to situational variance, be both flexibly
and inclusively formulated in close consultation
between all interested parties, whether Autistics, parents, health
professionals, or others.
Launching
attacks on the pro-cure movement and its proponents is as
counterproductive as it is unjust. I, for one, do not wish to see
anyone deprived of medical options. Among the few parents of Autistic
children I have come across, most impressed me, like my own parents who
wanted me cured, as altruistic in their dispositions. A far more
positive, and perhaps singularly efficacious, method for minimizing an
interest in cures is to actively promote inclusiveness and
neurodiversity. All Autistics must, without regard to levels of
functioning, be appreciated and encouraged within the full range of
societal institutions.
Whether
the Autisms present some people with perspicuous advantages is
substantially contingent on social indexicality. As an analogy, placed
into American special education, some dyslexics might discover that,
due to personalized tutoring, they eventually wind up as
better-than-average readers, even if, in a signally divergent context,
their dyslexia amasses no discernible benefits. Everyone has their
strengths and weaknesses, but, for Autistics, these can, relative to
the general population, become exaggerated. The Autistic savant may
excell in particular areas but be incapable of discharging certain
daily tasks.
Differences
are not inherently disorders,
and whether to embrace or to
discard the social constructions of reality by the mental health
establishment, including its scholars and practitioners, is a
fundamentally personal decision. While the multiple relations between
neurology and environment, or nature and nurture, may ultimately take
time to map, the basic proposition of our neurodiversity is not in
dispute. If a medical category contributes to a framework of personal
discovery, all well and good. However, labels should emerge out of
dialogue, not neurelitist imposition, and, even then, they can be
deconstructed.
In
this connection, is a sociology of the
Autism spectrum plausible? At first blush,
it might appear to be an oxymoron, analogous to proposing a botany of
antelopes or a mineralogy of squid. Yet, two Autistics, Temple Grandin
and Sean Barron, have already tackled similar subject matter in their
book, Unwritten Rules of Social
Relationships. Such a sociology, besides
examining issues of neurelitism and the social model of disability,
would present social constructions of reality from the standpoints of
those, like myself, for whom any successes follow considerable
perseverence and, often, outright imitation.
Indeed,
the Autistic community and its knowledges are, like all communities and
knowledge frameworks, socially constructed realities. In this regard, I
would like to explicitly distinguish between the presence of particular
Autistic traits, on the one hand, and the Autism spectrum with its
posited categories, such as classical and Autism, on the
other. Communities, including virtual ones, are principally the
products of shared identity and group negotation. The presence of
common biological, genetic, or neurological traits is of secondary
importance.
Paradoxically,
even as a number of Autistic traits increasingly appear to be grounded
in sound neuroscientific research and its peer-reviewed literature,
there remains an assortment of Autism spectrums, or constructions of
Autistic types, among various groups of researchers, clinicians,
Autistics, parents, and others. Similarly, while one may discuss the
biological evolution of racial traits, or geographically based
biological distinctions, the so-called races, in their multiple global
versions, are now acknowledged by researchers to be social
constructions – and highly selective ones at that.
Many
Autistics refer to themselves either as aspies
or, less commonly, as Aspergians.
Although, in principle, I have no strong objections to either of these
terms, neither have I been enthusiastically taken with them. Aspie,
while generally used in a friendly and conversational manner, is, like autie
(for Autistic), a bit too cutesy
to suit my tastes. Nonetheless, with a bit of reservation, I eventually
fell into the pattern of employing the expression myself on message
boards, chat rooms, and email lists.
Subsequently,
however, I abruptly stopped utilizing it, partially as protest but also
because I genuinely like thinking of myself as an Autistic, after
witnessing a number of posters on web message boards insist that they
were aspies, not Autistics. I even met one Autistic woman who told me
that, even though she is not an Autistic, she nonetheless
introduces herself as an aspie.
I recognize not everyone uses the word hierarchically, or perhaps to
escape supposed disgrace, but I wanted to be unambiguous in my
rejection of vocabularies and syntaxes of exclusion. As to Aspergian,
I am admittedly not drawn to the mythos,
or thought experiment, of a forgotten
civilization of Aspergia,
which is, at least to me, implied by that word.
These
days, I will refer to myself, conversationally, as an Autistic or, in
those instances where more precision may be required, either as an
Autistic or, informally, as an aspie Autistic. I know of
other Autistics, particularly other Autistic activists, who follow a
similar convention. I also know a woman, diagnosed with classical
Autism, who nonetheless introduces herself as an aspie to escape a
perceived stigma. Yet, I consider it preferable to embrace a word than
to run from it. There has been a history of oppressed peoples taking
ownership over designations which had been historically associated with
socially stigmatized statuses. On its most basic level, owning
a word deprives the bigot of a portion of her power to hurt the
targeted individual.
For
instance, Quaker
was at first a term of derision for members of the Religious Society of
Friends, while Shaker
was a taunting appellation for members of the United Society of
Believers in Christ's Second Appearing. Even the initial use of the
word, Christian,
was, in the ancient Roman Empire, gibelike. In recent years, the
pejorative fat
has been embraced by the National
Association to Advance Fat Acceptance.
Some lesbians now openly speak of themselves as being dykes,
and many Lesbians and Gay men routinely refer to themselves as queer.
(There is even a queer theory
in the humanities and social sciences.)
One
may argue for a substantive, or at least mitigatory, value in calling
oneself an Autistic when others have tried to flee from the
Autistic label. As I have grown ever more self-conscious in the
biographical social alienation of my Autistic self, ownership has, to
me, become a statement, an affirmation, of Autistic pride, a sentiment
I would, nonetheless, immediately distinguish from a platitudinous
arrogance or banal superiority. As I am proud to be an Autistic, I am,
within the compasses of my other selves, proud of being a sociologist,
a journalist, a ventriloquist, and so forth.
Moreover,
if there is to be a reconstruction of our knowledge, absent the
omnipresent specter of oppression, it will surely not entail, as some
youthful Autistics have conjectured, a separatist, escapist,
and, indeed, neofascist social polity with Autism dominance;
a Social Darwinist, internalized
neurelitist dogma of evolutionary supremacy; or a cartoonish existence
with mental superpowers over bullies.
However, even in my unreserved forsaking of these triumphalist notions,
and their reifying and demonizing of the neurotypical construct, I am
not unsympathetic. Many teens have identity and self-esteem issues
which, as Autistics, may be compounded by rejection. In my own teens,
I, too, would likely have acceded to them.
Oppression,
and its internalization, can,
and often does,
induce an understandable anger or even wrath. Elijah Muhammad's Nation
of Islam and Dwight York's Nuwaubian
movement, with their denials of caucasian souls, mirror some White
racist teachings which dismissed Black Africans as the cursed and
soulless progeny of Ham. Similarly, the male-bashing of the 1970s and
1980s, driven by the women's liberation movement and its consciousness
raising, frequently attributed to men the same undesirable
characteristics, such as helplessness, which men had for generations
ascribed to women.
With
this understanding, I have, for much of my life, attempted to
contextualize, not to criticize. Indeed, in my recognition of stuggles
against the oppressions which so many have faced, I honor the
indignation which they experience and regard it as an early stage of
consciousness formation. I see, in their dissent and in their
resistance, the beginnings of a liberation even while hoping,
simultaneously for dialectical resolution of the resentment and umbrage
within a more encompassing inclusiveness. Conduct has its reasons, even
if they are emotional ones. Moreover, I have come to recognize that the
supremacists are not the other. They could have been me.
Despite
the events which have thus far transpired, or perhaps more as their
denouement, I endeavor to be sanguine. By enriching our shared frames
of reference, as together we uncover the commonsense lifeworlds of
Autistics from across the spectrum, I remain hopeful that the normative
ethic of tolerance will be eclipsed by a transcendent ethic of active
engagement and learning in all communities and societies with a radical
democracy structured upon difference. Among the more outstanding
features of this civil rights movement,
as I presently envisage them, would be the inauguration of a universal
human right to neurological autonomy coupled with an inclusive
consciousness of neurodiversity and,
vitally, an unmitigated renunciation of a false
consciousness of neurelitism. Let it be.
Copyright
© 2007-
Mark A. Foster, Ph.D.
All rights reserved.
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