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The Silent Victims
Written by Editor   
Saturday, 28 April 2007 12:59

Nobody Nowhere, by Donna Williams, is a first hand account of struggling with autism--where language and emotion are disconnected, and where physical pain is experienced in response to stress. The physical pain takes the form of hypersensitivity in response to light, touch and sound, further propelling the author into an inner fantasy landscape that is vibrantly alive. Ms. Williams chronicles her experience and final victory of being "nobody nowhere" in a world where verbal and non-verbal behavior is the cornerstone for connecting to family, the community and society at large.

"Shattered dreams, broken glass,
Echos of a shattered past,
Too many names strewn about,
The kind that one can live without.
They're the shadows here, within,
That tear apart personality.
"[1]

Imagine, if you will, someone running their fingernails across a chalk board. Now imagine this as a constant background noise--where sound, light, and touch are painful, where words have no meaning. This was the domain within which Donna Williams found herself trapped. Ms. Williams was born with severe autism. For her, words were mere sounds that more often than not, signaled the physical pain that was to follow. Her early years involved a grandfather who spoke her language by mimicking and naming objects--objects which held no real meaning for her. And yet, the brief time she spent with him seems to be one of the few experiences that provided the much needed attachment that she rarely seemed to feel.

Ms. Williams' mother was exasperated that she could not connect with the child she brought into her life and often flew into violent rages. By the time Ms. Williams entered puberty, her mother and brother had made a game of ridiculing her. This, in combination with the ridicule she already experienced at school, ensured that she would feel like she was forever trapped, on the outside looking in. She had no place she could truly call, "home." Although her father was initially close, he too, seemed to withdraw into his own inner space, perhaps blaming himself for the blank stare of his daughter's eyes.

Throughout her life, Ms. Williams was paradoxically trapped between a reality where she had no concrete view of self--of who she was--and one where self was a painful prison to escape. The saving grace was her grasp of the English language. She was prolific--perhaps from having spent years mimicking those around her--and could create perfectly syntactical sentences. Still, for her, the elegant sentences had no meaning. In order to cope with the dangerous world in which she lived, she created imaginary friends. It was through these friends, in combination with psychosocial education at the age of 26-years-old that she was eventually able to connect with self, and thus, to some degree, the society in which she lived.

Ms. Williams' situation exemplifies the socio-dynamics of reciprocity in that others negative reactions would trigger her considered unacceptable behavior. Likewise, her unacceptable behavior would trigger others' negative reactions. Thus ensuring she was forever caught in a seeming hall of mirrors. Were it not for learning about autistic disorder, and later, working with autistic children, in conjunction with her rich, yet flat verbal inner landscape, she may have been perpetually caught in the nightmare that is Autism, or as St. John of the Cross proselytizes, "Dark night of the soul."[2]

The DSM-IV-TR describes autistic disorder as "the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests."[3] Per the Autism Resources FAQ, autism was first recognized by Leo Kanner in 1943.[4] Since that time, various researchers have come and gone with theories of their own. One such individual was the late Dr. Bruno Bettleheim and his since debunked "refrigerator mother."[5] Bettelheim's theory took society by storm with the 1967 publishing of his book "The Empty Fortress," the result of which needlessly displaced several thousand children from loving families.[6] Although there is a plethora of research, autism is still a little understood disorder. And while the cause has not been specifically identified, twin studies suggest that autism has a genetic component. The resulting track however appears to be largely dependent upon the individual's social setting, thus echoing Bronfenbrenner's Systems Theory.[7] At this time, cognitive-behavioral therapy (CBT) appears to present the most favorable outcome for treating children with autistic disorder.

In summary, I found the writing of this article to be extremely challenging. In fact, more-so than any article I've written in the past: to marry the anecdotal story--that of Donna Williams--with what research tells us, without losing the essence of her experience of victimization seemed in some ways a formidable task. While reading the book, I was struck by the similarities of what society has deemed an "idiot savant." Ms. Williams' memory was phenomenal. What onlookers did not understand however, is that the process of remembering words and objects provided her with a sense of order. It was her way of connecting. Another consideration that comes to mind is the recent tragic case of Cho Seung-Hui. An article in the Australian reported that Mr. Cho was diagnosed with autism.[8] Although his behavior was an exception and not the rule--at least, where autism is concerned--his inability to attach to other humans in conjunction with the extreme ridicule reflects a component of autism that is rarely considered--feeling through acts of violence.

For example, in Ms. Williams' autobiography, an incident arose wherein her mother, in a fit of anger, smashed an angel china dish. Ms. Williams proceeded to take the shards of broken glass and slash open her forehead, cheeks and chin. Upon seeing their daughter's profuse bleeding her parents responded with "complete shock rather than concern." She was only 9 years old at the time. To those of us looking on, her behavior might seem to border on the colloquially insane. The author's explanation however is both simple and profound, "Inside my head, what I was doing was completely sane. I didnt know how to cry out for understanding, I was lost and trapped, and I was making a statement."[9] In that single statement, Donna Williams captured the essence of what it means to be nobody nowhere.


Footnotes:

  • Williams, D. 1992
    Nobody Nowhere
    New York: Avon.

  • St. John of the Cross 2003
    Dark night of soul
    Dover Publications.

  • American Psychiatric Association 2005
    Diagnostic and Statistical Manual of Mental Disorders--4th Ed. Text Revision
    American Psychiatric Association.

  • Autism Resources
    Frequently Asked Questions

  • Bettelheim, B. 1967
    The Empty Fortress: Infantile autism and the birth of the self
    New York: The Free Press

  • Barden, R. C. 1999
    Personal correspondence

  • Routledge 1999
    Handbook of autism: a guide for parents and professionals

  • The Austrailian 2007
    Cho had autism say Korean relatives.

  • Williams, D. 1992
    Nobody Nowhere
    New York: Avon.

 

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