Matei Calinescu Postscript

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Matei Călinescu - Postscript to "A Portrait of M" 1/41

Postscript to "A Portrait of M"

Matei Călinescu

Copyright © 2006 Matei Călinescu

All rights reserved to the author.

Translation of "At Harmony School" by Nicoleta Dăscălu and Mihaela Arion.

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At Harmony School

by Daniel Cristea-Enache

I don’t think there is a bigger misfortune than losing one’s child. In fact, our

tribulations are not comparable, not even quantifiable. They just are. But the death of

the being you gave life to, whom you have seen growing from the size of a ladle into a

grown man, his physical disappearance before yours represents an aberration of the

biological course of life, a deviation from normalcy, a monstrosity. Only a cruel God,

like the one in the Old Testament, could ask you to sacrifice your son for Him. Many of

the elderly people who go through this hardship cannot resist it and – with the pillars

of their souls shattered – follow their children, unwilling to keep living.

Matei Călinescu has written a book: A Portrait of M. M is, or rather was,

Matthew Călinescu, son of the well-known literary critic and theoretician; a tormented

child, born under the complicated-ill-fated sign of a "constellation" of diseases, who

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died before the age of 26. How can one write about such a tragedy? Where does the

father struck by misfortune find the strength to put on paper events and episodes

lived with his "strange" and dear son, now lost forever? The pathetic tone doesn’t suit

at all the person writing this diary in mourning, who, by drawing this biographical

portrait of Matthew, finds relief in this attempt and a way of being with his son again.

In this particular case, writing is not running away from reality, is not a way of

escaping or finding inner peace. On the contrary. writing is the connecting link

between father and son, a bridge made of words and images that the former builds

toward the latter, over the rift between them. For forty days, Matei Călinescu does

nothing but intensely think of M. He is looking for his son’s shivering figure among old

papers and memories, and lovingly envelops him in the protecting "shroud" of the

manuscript, trying to explain and "translate" him for our understanding. In the end, we

have a father a little more reconciled with his pain, brightened by sadness; and an

exceptional book.

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The zigzag chronology opens in its pages several drawers of the memory, in

distinct sections of the diary. The painful, traumatic present of the confessions

following Matthew’s death embraces dense fragments of older diaries, with an

obviously outdated and obsolete perspective, changed by the evolution of the disease

and of the drama. We are not talking about the compositional artifices that a diary (and

a diary inside a diary) uses to become part of the body of a literary fiction in order to

stress its degree of artificiality, its conventional character. The notebook in mourning

covers, 1985 – 86 and Diary M, 1993 – 98 are brought to light and mainly transcribed

under the spell of an imperious wish, an almost organic need of the father to trace, as

far as possible, his son’s footsteps. Today’s certitudes (what exactly were M’s diseases

and how their manifestations could have been counteracted) throw light on yesterday’s

tormenting enigmas. But the first are associated with death and the others, even

though unsolved then, were related to a living person, now gone. A highly dramatic

tension is thus created. With every page Matthew is given back to his father and,

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almost simultaneously, taken back, and placed on his final catafalque. An incessant

torture, with the heart’s wound re-opened again and again in a laborious retrospective

journey. Matei Călinescu is a cerebral man, with a lucid and clarifying mind, and the

complex of diseases that ravage his son hurt him to the fullest. It rocks his system of

reference and the established frames of his understanding; it shatters his successive

"explanation" theories and threatens to shake him both professionally and humanly.

But, while M’s pathology anguishes the father and causes both his habits and

convictions, his very intimate beliefs to crumble, in the end it is M who saves Matei

Călinescu. We are watching a enthralling role switching in the father–son relationship.

Matthew’s exact diagnosis? Asperger’s syndrome (a mild form of autism) and,

on the other hand, the epilepsy that will finally put and end to his life. The latter is a

so-called classical and a rather "literary" disease, and Matei Călinescu observes its

symptoms bearing in mind the aura that used to announce to the Dostoievskian prince

Miskin the beginning of another devastating crisis. Autism on the other hand

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continues to be an enigma for a big part of the medical body and even for the

(self)proclaimed specialists in the field. The desperate parents are looking for real

professional authorities, capable of explaining to them the coordinates and

determinants of the disease. But all they can obtain, up to a certain point, is the phrase

high-functioning autism. The "consolation" they are offered is that M only suffers from

a severe emotional disability, and not a mental one. Only later, with the progress made

in the research of this "modern", recent disease by Asperger’s scientific article, the

knowledge about this disease becomes more profound and detailed. Up to this

threshold of understanding, the parents struggle in the tangled and slippery net of

unanswered questions. What’s missing is not only the solution to M’s severe problems,

but also their names, the lexical key for a behavior that troubles them and makes them

suffer incessantly, in a horrible progression of an evil without name or face.

After a long period of time, this evil is finally defined and the fight against it

becomes possible. Asperger’s syndrome has a broad array of correspondences with

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what was happening to Matthew day by day. Autists live in the present and have great

difficulties in perceiving the future. Every morning, when waking up, they have

troubles in finding their own identity. They lack imagination and make efforts to shift

their attention from one thing to another, to cover the distance from a context or

sentence and another. The knowledge and understanding of these contexts and

sentences, and the communication based on them are deeply non-contextual and

rigidly-literal, in a mental cecity that fractures the relationships with the people

around them. Like other high-functioning autists, Matthew is fond of abstractions and

has a mathematical vision. (Do you remember Dustin Hoffman in Rain Man, counting in

the blink of an eye some matches scattered on the floor?) He also has a Manichean

vision, and sees the world as being divided into black and white, good and bad, reality

(very complex) and fictional episodes (to be enjoyed as such). There are no nuances

and links in-between. This is the reason why he watches with indifference violent

movies or wrestling matches on TV, but is disturbed by the slightest changes in his

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daily schedule. On one hand we have the fiction, on the other, reality - felt as

extremely complex, confusing, aleatory.

All this data about Matthew’s disease does nothing but emphasize, by

contrast, his moral beauty, his seraphic candor, and his angelity of which his father

gradually becomes aware. And gradually, through a subtle, amazing translation, the

tormented and yet serene child becomes his father’s teacher.. The name of the school

where Matthew went, Harmony, is utterly symbolical. The father learns to create a

harmony between him and his very special son, to be on the same wavelength with

him, to bridge through love, attention and endless patience the traumatizing distance

between them. It is true that they do not achieve that level of communication that only

autists share (in a language beyond language, one between souls ); but in this effort to

get closer and understand each other there’s something heroic, like in a

contemporary, tangible, intensely personal tragedy. Matthew’s destiny is anticipated,

then brutally separated, then, again, opened to predictions – on a more profound level

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of truth – by the beginning of his life, which vibrates in a note written in his father’s

diary: "August 27, 1977. Uca and M leave the hospital. Uca is happy. M is a wanted

child, a child who is loved, almost worshipped by his mother from the very first

moment. He will be happy."

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Author’s Note

This is a biographical portrait of my son, who was born on 24 August 1977 in

Bloomington, Indiana, USA, and who died on 1 March 2003 in his hometown, not yet

twenty-six.

It was written during the forty days after his death, the forty symbolic days that

follow everyone’s death. Throughout those days I was incapable of doing anything but

thinking of him as I wrote, transcribing fragments from my intermittent diaries, trying

to capture the fragile truth of memories which haunted me and which, I knew, would

inevitably be lost in the dusk of time. I did not count the days, but it so happened that

on the fortieth I felt reconciled to my pain, almost serene in my sadness. The outcome

is this reflection on his life, and also on that part of my life when I did my best to

understand the enigma he embodied. I never did, but I gained a different insight,

namely an understanding of the fact that he was, in his own way, and in the way he

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continues to live in my memory, a gift. God’s gift? I cannot be sure, but his name,

which is also mine, contains a divine echo of that gift from the depths of biblical

etymology. A name is a sign, it has often been said – nomen est omen – but the omen

is always indecipherable: it is a small mystery wrapped within another which is greater,

much greater, in fact infinite.

I have written this book for myself as a kind of spiritual exercise, but I do hope

it may help others. This is what prompts me to offer it for publication. I wish to thank

my wife, Uca, and my daughter, Irena, for reading the manuscript, adding memories

and making useful suggestions.

(Matei Călinescu, note to A Portrait of M)

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Postscript to "A Portrait of M"

Almost a year has elapsed since M’s death and I have continued reading and

thinking about autism and Asperger, as if he were alive. I still want to understand

him, to understand his condition. The enigma he embodied still haunts me and will

haunt me for the rest of my life. Curiously, epilepsy—which actually killed him—is not

part of the enigma. I wonder why? Perhaps because epilepsy, tragic and mysterious as

it may be, seems to me to be less so than the autistic mind. And M survives in my

memory not because of his heart-breaking and eventually fatal seizure disorder, but

because he was autistic, because he belonged to that strange world of autism, alien

and yet, in its apparent aloofness or “otherness,” asking tacitly, at times desperately,

to be understood on its own terms and also asking for empathy, not the usual kind

(which it tends to reject), but of another kind, cooler and simpler, without gestures of

compassion, less explicit or verbal, more friendly to silence, to the absence of

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context, to a sort of asocial or quasi-angelical thinking (supposing that angels are

mathematicians, preoccupied mostly with resolving pure equations that have nothing

to do with our real, competitive, humanly ambitious world). Year after year I tried to

understand M and only toward the end did I feel—rightly? wrongly?—that I was closer

to him. But this still didn’t mean that we could communicate—or, to use a better

word, commune—in the more subtle ways in which he communed with other autistic

people. These ways remained inaccessible to me.

Reading recently Donna Williams’s 1996 Autism: An Inside-Out Approach, I

recalled the following episode, which illustrates indirectly and by contrast what I am

trying to say. Some years ago, my wife and I attended for the first time a national

conference organized by ASA (the Autism Society of America), which was meeting in

Indianapolis. We decided to take M along because, aside from the usual professional

lectures and panels, there were scheduled a few sessions in which high-functioning

autistics would share their life experience and we thought that he would profit from

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listening to them. One of the featured speakers in that category was the by then

famous Donna Williams, author of the best-selling Nobody Nowhere: The

Extraordinary Autobiography of an Autistic (1992). At her talk, I recall, M was seated

in the first row, in the full but completely silent room (the audience had been asked

not to applaud, because the noise of clapping hands would have upset her). The

silence was all the more necessary as the fragile-looking Donna spoke in a trembling,

feeble, barely audible voice, in a sort of pianissimo musical lisp. All ears, totally

attentive, M was staring at her with a happy look on his face. And Donna noticed him

and realized that that he was “like her.” At the end of the talk she inquired about the

name of the tall, broad-shouldered young man with chestnut hair, in a tee-shirt,

wearing big glasses, sitting in the first row. The woman Donna requested

(whisperingly) to inquire came straight to M and asked what his name was. She then

went to Donna and returned to him and said: “Donna says hi to Matthew!” Although

he didn’t show any sign of surprise, M was pleased and proud. I wonder whether he

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had understood what Donna had been talking about (being much less verbal than

her)--but did it actually matter? They had recognized each other as belonging to

same world, and this recognition—achieved how?—erased all differences, except

those of names. M knew, of course, Donna’s name but she needed to know his for

that brief message of sheer recognition: “Donna says hi to Matthew.” A message that

didn’t require any kind of response (M smiled to himself but didn’t say anything),

gratuitous but not devoid of a kind of empathy without reciprocity, discreet and

respectful of the other’s solitary freedom, without the expected gratefulness that the

usual, socially accepted form of empathy carries with it. Instinctively, for an instant, M

and Donna had recognized each other—without any consequence. But are

recognitions less true if they have no consequence?

I cannot help being intrigued by the ways in which autistic people, unlike

“normal” people, spontaneously and unfailingly recognize other autistics. Donna

Williams writes: “This is a bit like an animal sensing whether another creature is of the

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same or related species or not. Some animals do this by smell or sound. Some

animals certainly seem able to observe the foreignness and incomprehensibility of the

behavior of creatures that are not like themselves […]. When I am around non-autistic

people I soon know they function according to a generally alien system of functioning

that makes little match with my own. I know this because they are essentially

multi-track and I am essentially mono. […] Like some animals, whatever I share in

common with others, human or otherwise, what comes first for me is the recognition

that I am in company of someone who has a basic sense of making sense of the world

and themselves that is ‘like mine.’” I keep asking myself—as I did when M received

the message “Donna says hi to Matthew”: isn’t there some kind of empathy, however

unconventional, involved in this recognition? An empathy that is unaccounted for by

most professional tests, statistics, and charts? Or should one call it by another name?

Writing these lines, it is hard for me not to think of my relationship with M,

based, as far as I was concerned, on so many misunderstandings, false projections,

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and wrong expectations on my part; and, as far as he was concerned, on sheer

incomprehension as well as on his sense of dependency, which made him angry at

times, but which he grew more and more accustomed to. He became friendlier to me,

he would call me by my first name more often than “dad” (he remained ambivalent

about the word “dad” and he never addressed me as “father”). In his own way, and

particularly when I was not present, he expressed affection toward me. So much so

that, when I was out of town, during the last years of his life, he even missed me. He

would ask Uca: “When is Matei coming back? He is a better cook than you!” For I

enjoyed preparing for him tasty vegetarian meals, always from fresh produce, always

with the right quantity of olive oil and with the spices that I knew he liked—

transforming his palate into that of a rather sophisticated vegetarian gourmet; which

doesn’t mean that he minded eating canned vegetable or TV dinners; although he

would prefer (tacitly, reluctantly when I was present) my cooking, voicing his praise

only when I was away for longer periods of time. He must have been the first to

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realize that we belonged to different species, that real, profound communication

between us (unlike his communication beyond words with Phil, his mentor, or with his

long-time friend Julian, or even with his mother, who was infinitely more patient with

him) was out of the question. Things may have become a little more tolerable for him

during the last decade of his life, after I became aware that I myself belonged to what

is now called the “broader autism phenotype,” prompted by a reflective and

self-reflective perusal of Asperger’s paper (as I noted in my memoir) and by more

recent readings. Of course, this is a vague notion: the “broader autism phenotype” or,

more simply put, having certain autistic features, could be applied to many people

who function perfectly in society but tend to be somewhat withdrawn, less sociable—

in the sense of gregarious—more introverted, more solitary by vocation, more distant

in their relation with others. At any rate, I still belonged to a different species,

perhaps not so far removed from his own; but even small differences can lead to

major incompatibilities.

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As I said before, I want, I need to learn as much as possible about autism—

and if real, certain knowledge is out of reach, I want at least to keep up with the new

areas of research, the new ways of questioning, the new hypotheses, and the new

testimonies of parents, or of the few people with autism who can write and tell their

story. Very recently, I came across a book by Simon Baron-Cohen, The Essential

Difference: The Truth About the Male and Female Brain (2003). I have mentioned him

in my memoir for his earlier volume, Mindblindness: An Essay on Autism and Theory

of Mind (1995) and I have read other works by him and his collaborators. I would like

to say here only a few words about The Essential Difference and the thoughts it

provoked in a layman like myself, although one with some direct parental experience

on the subject of autism. But before doing that, I feel like evoking some purely

subjective reactions to my readings on autism—this one included—over the last year

or so. I am speaking of them here because they are germane to both my general

acceptance of Baron-Cohen’s thesis (autism is probably a case of the “extreme male

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brain”) and my criticism of its limitations (as I suggested earlier, certain forms of

autistic empathy do exist and should not be glossed over). The reminiscences that are

brought forth by my readings on autism are also relevant, I think, to the

non-professional, and even anti-professional, views of people with autism and of

parents of autistic children, of which I will speak later. I must confess: I cannot read

anything about autism in detachment. How could I? My aim in this memoir has been

to draw a portrait of M, in order to understand him better. Him—and others like him –

and myself in relationship to him.

For me, such reading is, on a personal level, also a way of reviving M in my

mind. I see him, through the pages I peruse (however dry and theoretical they may

be), as if they were windows on his past and mine, at various ages: from infancy

through his happy pre-school years, through elementary, middle, and high school,

and, after graduation, through the jobs M held as a young man, and even—projecting,

musing, surmising—through later stages of his life in a possible future that he

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missed. Even though some of the descriptions of Asperger I come across do not fit

him, or fit him only partially, his image asserts itself vividly through the very

differences or contrasts. Reading has always been for me, however vicariously, an

opportunity for self-reading. M’s image in between the lines—the result of an

uncalled for but unavoidable personal projection—often acquires an amazing

precision, poignant and immaterial, that after a while dissolves into his big, kind

smile—which may have been (as some writers maintain) nothing more than a defense

mechanism against the incomprehensibility of the others’ world. But I cannot

convince myself that there was no genuine sensitivity or goodness behind M’s

magnetic smile—my fondest memory of him. On certain occasions, when he was

alive, his smile may have been defensive, hiding perhaps a fear of what, for him, was

the unknowable in others, in unanticipated situations. However, there were many

occasions in which his smile expressed a wide range of positive sentiments—from a

confident love of younger children (with whom he could fully empathize in terms of

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his own emotional age of a three- or four-year-old) to a state of wonder and elation

when he smiled to himself, on his way back home from work, and unaware that he

might be observed; from the ingratiating smiles with which he asked for a favor

(“Dad, could you drive me to ‘Borders’? Please, please!”) to those full of sincere joy

when his request was answered favorably.

But let me now come to the main focus of my attention as I read

Baron-Cohen’s The Essential Difference. From the first page, the author states clearly

and succinctly the thesis of the book: “The female brain is predominantly hard-wired

for empathy. The male brain is predominantly hard-wired for understanding and

building systems.” The demonstration that follows, based on research, observation,

and psychological tests (some of them devised by the author and his collaborators) is,

or sounds, convincing to me.* (I am so easily, too easily convinced by all sorts of

*I should note, however, that much of Baron-Cohen’s argument is purely hypothetical: for instance

what he has to say about “The Extreme Female Brain,” the existence of which is theoretically

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theories about autism, even when they are contradictory; for many years I have

avoided psychoanalytical studies of autism, for fear they might convince me, which I

didn’t want after having read Bruno Bettelheim.)

I would agree with Baron-Cohen that autism is, among other things, an

illustration of “The Extreme Male Brain” (pp. 133-154). My agreement derives from

my own intuition and from the intuition of a great specialist, Dr. Hans Asperger, who

synthesized his diagnostic observations on autistic children in his important 1944

thesis, which I mention in my memoir in a diary entry dating from 1993 (an entry

which records my self-scrutiny: another instance of my tendency toward

self-reading). Baron-Cohen refers to that work, too, quoting the following crucial

necessary, by deduction from the statistical model on page 150. But the reality of such a brain is

hard to grasp without any concrete examples of “hyperempathy” and one cannot understand why

such “hyperempathy” would be less disabling than the extreme systematizing of the male brain – so

little disabling, indeed, as to become indistinguishable from empathy pure and simple.

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passage: “The autistic personality is an extreme variant of male intelligence. Even

within the normal variation, we find typical sex differences in intelligence.”

Baron-Cohen, like many other researchers in the 1990s, speaks of autism as a

“spectrum”, covering an extremely wide range, form non-verbal autistics (usually with

an IQ below 70, which is the low average) to verbal autistics, high-functioning or

Asperger types, with an average IQ of 100 and up (according to Stine Levy M’s IQ was

100), or even with a much higher IQ, possibly reaching the level of a genius—a

mathematical genius, in the occurrence—with major social difficulties, with shocking

oddities of behavior, with good language skills, but with little or no social

intercourse.

“Autism spectrum conditions…appear to affect males far more than females,”

writes Baron-Cohen. “In people diagnosed with high-functioning autism or AS

[Asperger Syndrome], the sex ratio is at least ten males to every female [emphasis in

the original]. This too suggests that autism spectrum conditions are heritable.

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Interestingly, the sex ratio in autism spectrum conditions has not been investigated

as much as perhaps it should have been, given that Nature has offered us a big clue

about the cause of the condition” (p. 137). The superior Asperger types can

sometimes marry and have children (but in those cases the wife, as Baron-Cohen

points out, needs to be what he calls a “saint”), and have brilliant careers. A highly

interesting case, described in the chapter “A Professor of Mathematics” (pp. 155-169)

is that of Richard Borcherds, a professor at Cambridge University and a recipient of

the Fields Medal (the highest possible distinction in mathematics, an equivalent of the

Nobel Prize in other areas). Interviewed by Baron-Cohen, Borcherds appears as

someone who doesn’t realize the huge difference between himself and others in

terms of social understanding (this cannot help reminding me of M):

He was a master of mathematical judgment, but had hardly left first base in

relation to social judgment. Social oddness is the first key symptom of AS. I asked

him, for example, if he thought any of his behavior was socially odd or unusual. He

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said he couldn’t think of anything in particular […]. I asked him if there was anything

else that he thought he did differently to others. “No,” he said. What about

communication, the second of the key symptoms of AS? Was there anything different

about that? He could not think of anything, though he admitted he was not much of a

conversationalist. From his perspective, talk was for finding out what you needed, and

not much beyond that. I thought that he omitted to mention a function of language,

which is to communicate your thoughts and feelings to another person, and to find

out how they might be feeling or thinking. I said as much, but he said that was not

really of interest to him (p. 157).

M, as I have pointed out, didn’t feel that he was different from others

because, as he used to put it, “everybody is different.” But I wouldn’t say he was not

interested in the feelings of others. When I complained: “I feel sick” or “I feel rotten,”

he would become concerned and, in his awkward way, try to be consoling. He was

sensitive to pain—to the obvious signs of physical pain in others—and would exclaim

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“I am sorry, I am so sorry” when someone in his presence accidentally hurt himself.

But more subtle changes of mood escaped him. The thoughts of others didn’t really

interest him, but when he was in a really good mood and someone made a general

statement, he seemed to enjoy turning it upside down, even when he knew he was

wrong: it was his naïve way of participating in the play of conversation, perhaps of

being playful, the beginning of a humorous reversal of the obvious, which he

sometimes pursued at great length, giving all sorts of cock-eyed reasons for why he

was right (but I need to stress: being conscious all along that he was wrong).

He very rarely communicated his own feelings and states of mind and when

he was down—in the periods when he obscurely, unconsciously, organically sensed a

coming seizure—he fell silent. Asked if he felt sick or had a headache (when he was

eleven or twelve, for a year or so before his seizures started, he developed strong

migraines that made him vomit and that worried us so much that we took him to

Children’s Hospital in Cincinnati, to be told that causes of migraine are mysterious),

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he clapped his hands over his ears and invariably said “I am okay”, but in an

exasperated tone of voice that meant the contrary and also something like “Leave me

alone!” He would sit for long periods of time, with his elbows on the table and his

head supported by his hands, eyes half closed, refusing obstinately to complain. “I am

okay, I am okay, I am okay, don’t worry.” He took everything as if it had to be the way

it was. A year or so before his passing, when he had a stress fracture of one of his

pelvis bones and had to lie down for over a month, moving around the house in a

wheelchair, he never voiced the slightest complaint. Actually, he seemed satisfied if

not happy to be in the center of our attention, to learn how to use the wheelchair, to

be obedient, to be an “ideal patient,” as he had been at the National Institutes of

Health several years back.

As for mathematics, I have noted in my memoir M’s strong attraction to

numbers, to arithmetic operations and calculations, and to mathematical reasoning,

in both elementary and middle school. He was proud of being “good at math”, of

29



being praised by his teachers, of being placed in an advanced group (in second grade

he did third and fourth-grade work in math), of being admired by his classmates . All

of this afforded him, at least in his own eyes, a certain status among his peers at

school, allowing him to ignore their taunting and teasing, which went on even as they

recognized his mathematical talent. In high school, however, he had a harder time

keeping pace (he was helped by private tutors). The reason for this was, I think, the

onset of epilepsy and the medication he was put on to control his seizures. This

medication, in ever increased dosages, may have impaired his memory: according to

one of his tutors in calculus, a very talented young mathematician working for his

Ph. D., M had a natural and quick understanding of what was being explained to him,

he “saw” mathematical relations, but he also quickly forgot what he had learned. At

any rate, he thoroughly enjoyed doing math on an one-to-one basis with his tutor —

it was for him like playing a game; he always eagerly expected the coming of his

tutor — but his game did not improve because of the frailty of his long-term

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memory.

This impairment may have led to M’s strange sense of time, reduced to a

narrow present, to an uncertain, limited past and hence to an equally uncertain,

perhaps anxious, future, of which he didn’t want to think. “I forget a lot,” M would

readily admit. As for the future, when asked what he would like to be when he grew

up, he was always puzzled, and responded with his easy-way-out answer to

questions he did not understand: “I don’t know”, sometimes adding: “How would I

know?” I wonder if memory is not, to a very large extent, responsible not only for our

sense of the past, but also for our perception of the future, for our ability to make

plans, to day-dream (timidly, ambitiously), to form life projects, to see ourselves in

wished-for situations. I remember how sad I was when I heard M say: “I forget a lot”

and then stressing, with the beginning of a philosophical irritation: “I forget a lot—

and so what?” And so what? And so what? This was perhaps M’s metaphysically most

unanswerable question: And so what?

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Empathizing may be “modular,” that is, independent from other processes,

independent also from the systematizing ability of the extreme male brain, as

Baron-Cohen suggests—which, in passing, would superficially confirm but ultimately

ruin his whole argument. For “modularity” doesn’t seem to explain why autistic

people, while empathizing imperfectly, clumsily, if at all with “normal” people,

empathize fully and even passionately (admittedly a cold passion, but a passion

nevertheless) with people like themselves. In the literature about autism I have read

over the last year, this characteristic—of which M’s strong, obvious empathy with

other autistics made me aware—is mentioned in two books. To the first, Autism — An

Inside–Out Approach (1996) by Donna Williams, I have already referred. The second is

Elijah’s Cup by Valerie Paradiz (2002), a gripping and insight-provoking memoir by

the mother of an autistic son. I will start with Donna Williams’s book, which I didn’t

read at the time when it came out, because then both my wife and I were increasingly

worried by M’s devastating seizure disorder, that the medicines he took—and which

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no doubt had severe side-effects—were less and less able to control.

For Donna Williams, as I pointed out before, the reciprocal recognition and

empathy between persons with autism seems to derive from some kind of immediate

intuition or even instinct. Using the term “system” entirely differently from

Baron-Cohen and other professionals, she means by it simply a way of making sense

of the world, from childhood on, in reaction to sensory stimuli (sounds—including

tones of voice—, colors, smells, sensations of touch and texture, tastes) that, in the

case of autistic people, can easily become overwhelming and produce a dramatic,

paralyzing sensory “overload.” The autistic individuals’ “sensory hypersensitivity” is

linked to their “single-track” or serial mode of processing stimuli and explains why

there is such a gap between the autistic mind and the "normal” individual’s capability

of using a “multi-track” system of processing sensory information and patterning it

so that it is socially acceptable. The key word here is “acceptability.” There is no

question of “reading other minds,” when the other minds tend to impose (however

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gently) their own interpretations, socially validated, on the mind of the autistic

person.

The failure of “reading minds” is thus reciprocal and its effects are extremely

disorienting on both sides. Donna Williams writes: “My ‘autism’-related difficulties

took me on a journey where sensory hypersensitivities made certain sounds, textures,

patterns of colors my personal and private heaven. In the hands of other people who

would indiscriminately inflict upon me the sounds, textures, patterns and colors I

found overwhelming and intolerable, my sensory hypersensitiveness became my

social hell.[…]. Emotional hypersensitivity made contact with gentle affectionate

people give me the effect of being force fed with a box of lemons. It made being

social a sick joke.” Hence, among other things, the fear of being loved (in a socially

recognized sense), that is, expecting reciprocity; hence the impossibility of

empathy—irrespective of the maleness or the femaleness (or the genderlessness, one

might add) of the autistic subject.

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As soon as I got a copy of Valerie Paradiz’s memoir about her son Elijah, I

read it without putting it down, through an afternoon and a night of insomnia (which

didn’t diminish my attention) in late January 2004. I related easily to the author—an

academic in the humanities like myself, although from a younger generation. The

writers from whom she quotes—“high-brow” writers from Kafka to Gertrude Stein to

Wittgenstein to Marjorie Perloff on Wittgenstein—are all quite familiar to me (actually,

Marjorie Perloff, who published her book, Wittgenstein’s Ladder, in 1996, is a close

personal friend; the world is indeed a small place!). I was fascinated with Elijah’s

development, between ages two and ten, as well as with his mother’s poignant but

finally successful efforts to understand and identify her son’s needs, within the

emerging context of thinking of autism as not a “mental disease” but as a “way of

life”, and even a “culture” with its own history, which she reconstructs throughout her

book. (She brings in vivid biographical detail when speaking of famous personalities

with autistic or Asperger-like features, such as Albert Einstein, the philosopher

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Ludwig Wittgenstein, or the pop artist Andy Warhol.)

In moral terms, Valerie Paradiz sets a wonderful parental example and her

book is an impressive testimony of what is involved in discovering, through love, the

fragile, demanding, and beautiful “otherness” of one’s “disabled” offspring. Of course,

Elijah reminded me—by symmetrical contrast, parallelism as well as difference—of M.

His seizure disorder, unlike M’s, started early on, at age two, and fortunately he could

be weaned off medication before entering school. In M’s case, the onset was at age

thirteen and, after an interruption of nearly three years, the seizures came back with

increasing intensity and frequency, uncontrollable by medication, leading to his

premature death in one of the rare cases of “Sudden Unexplained Death in Epilepsy.”

(But how rare are such cases? Among the cards we received from members of our

small community, who had read M’s obituary in the local paper, there were two which

described absolutely similar recent deaths of young people with epilepsy.)

Among several other analogies, I was struck by Elijah’s question to his

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mother, one day after coming home from school (“Am I crazy?”), which seemed to

echo, over the years, M’s harrowing question to Uca in 1986, when he was nine and

we were having breakfast, all three of us: “Am I an idiotic person?” He refused to

explain why he asked it (“Just asking,” he said in a calm, thoughtful voice; he was in

one of his bright moods). My feeling was that if we had answered “yes” (but of course

his mother denied it), he would have remained as unaffected, aloof and serene as he

had been all through that sunny crisp spring morning before going to school.

Obviously some classmate had called him “idiot” or something like that, but that

seemed to make little difference to him, as he was at peace with himself and the

world. He had developed his own method of blunting or ignoring stigmatizing

language: the concept of “abnormality” had no place in his mind. Moreover, he

himself never used such language. Derision, mocking, insulting, verbally injuring

others were no part of his sensibility; he had a clear sense of justice and fair play.

When others mocked him – which, as he grew up, became an extremely rare

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occurrence – he preferred not to respond in kind.

Uca and I were certainly aware of the autistic empowerment movement,

started under the umbrella of Autism Society of America (ASA) by Jim Sinclair and

others—a movement that grew increasingly independent from the more

traditional-professional oriented ASA—but we didn’t follow it, as perhaps we should

have, due to M’s more and more acute seizure disorder, which made him unfit to go

the Autreat summer camp (a retreat for autistic people organized by Jim Sinclair and

Autism Network International, or ANI). Valerie Paradiz’s account of her and Elijah’s

participation in Autreat is one of the most interesting parts of her book. The whole

idea of ANI, I think, is based on the intriguing empathy among autistic people. As

Valerie Paradiz puts it: “Although the core organizers of ANI are all

‘high-functioning’, the group extends its vision of independence and autistic

self-awareness to the entire spectrum.”

In this respect, I feel, professional research is behind. How can autistic people

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read the minds of other autistic people? The explanation seems simple but the

consequences of taking stock of this fundamental fact could revolutionize the whole

theory-of-mind psychology as it is now established. For one thing, it could make it

more sensitive to cultural differences and broader anthropological questions. At any

rate, the notion of a “culture of autism” and of a “normality” within this culture—

including the possibility of spontaneous empathy—merits exploring in a more

systematic fashion.

That autism is, statistically speaking, a disability—and a tragic one, at that—is

undeniable. But it is the responsibility of our society, insofar as it wished to be

considered humane, to understand this disability as it seems to understand blindness

or deafness. As Valerie Paradiz writes about Jim Sinclair: “Clearly, he was […] an

intellectual descendant of Helen Keller and Louis Braille. And like these early activists,

who transformed the paradigm for the deaf and blind, Jim’s pioneering ideas on

autism were being received with ambivalence, and sometimes outright rejection, by

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major organizations like the Autism Society of America (ASA) and More Advanced

Autistic People (MAAP). […] Jim was one of a handful of autistics at the time who were

introducing basic concepts of self-advocacy. He modeled his ideas on the successes

of the deaf community and other groups within the disability movement” (p. 137).

About attempts to “normalize” autistic behavior, Sinclair observes with common

sense: “Expecting that we act ‘normal’ socially is sort of like expecting blind people to

drive cars instead of teaching them skills to use public transportation.”

A measure of the (partial) success of this movement was, at least insofar as M

was concerned, the creation of the group ABLE in Bloomington, at whose monthly

meetings for supper in various restaurants, and occasionally for attending basketball

games, in Indianapolis or here, in our university town with a fine basketball team, M

participated with great pleasure (a pleasure also very soon forgotten). The real

problem for autistics is how to deal, most of the time, with solitude. As a matter of

fact, social interaction for people with autism (even if they interact happily with other

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autistics in summer camps such as Autreat) remains a marginal thing in their

day-to-day life, in which they are surrounded and protected by “normal” people, with

whom they communicate only superficially. Who will teach them how to deal — if they

are not mathematical geniuses, or logical geniuses like Wittgenstein — with solitude?

That was, I think, M’s greatest problem, compounded by his lack of

long-term memory and therefore by his reduced power of anticipation. He spent an

inordinate amount of time playing video games such as Nintendo or watching TV —

mostly Disney stuff or programs on Nickelodeon, but also the pseudo-violence of

professional wrestling shows, in which, I would guess, he appreciated more the

well-rehearsed loud faking than the apparent violence; and of course sports, about

which he knew a lot, and which offered him a means of broader social interaction. But

his was an essentially solitary mind. I see it as a pure mental sky, transparently blue

as some late summer skies, not crossed by cloudy reveries, nostalgias, memories,

projects, or even hopes. In a way, his forgetfulness was a bliss for him, because he

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did not recall or consciously anticipate his seizures, and so he could fully enjoy his

moments of happiness, which came to him as gifts out of the blue, all the more

exciting as they were rarely if ever expected.

What continues to amaze me is that M had, naturally, such a good — and

perhaps I should stress, beautiful and lovable — character. We failed to teach him

how to pretend to be “normal.” He was who he was. He may have become

momentarily angry when he was misunderstood by his parents. As for the others’

misunderstandings, after his early years in grade school, when he responded as a

bully to the other kids’ taunting, they tended to amuse him later on or not to matter

at all. He was gentle and tolerant. His essential, untaught, spontaneous, luminous

goodness remained the same. And when he smiled, as I remember him, he smiled not

only with his lips or his eyes or his face, but with his entire being.

Matei Calinescu Postscript

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