Monday, March 31, 2008

Autism Awareness

So, April is Autism Awareness Month, and April 2nd is World Autism Awareness Day (as approved by the United Nations General Assembly). As you may know, my daughter, who is now twelve years old, has autism, and I've posted on this subject several times previously.

We have put up a family page to help raise money for one of the organizations involved in increasing autism awareness and engaging in autism advocacy, The New Jersey Center for Outreach and Services for the Autism Community (COSAC), and you can go to that page by clicking here or on the link right above my picture on the upper right. And if you have the inclination, and of course only if you can afford to do so, then any donation you can make would be appreciated.

COSAC is an excellent resource for information about autism, as is the Autism Society of America, and Autism Speaks. Also, CNN is providing comprehensive (for cable news) coverage of autism, especially for World Autism Awareness Day.

Now, here's a list of my previous posts directly related to autism, for what they're worth, in order from the earliest to the latest:

I've left out the posts that make minor references to autism, and to be honest, I forgot I had posted this many times on the topic.

And while we're on the subject, let me share some basic information with you in this post, adapted from my book, Echoes and Reflections: On Media Ecology as a Field of Study:

Autism is defined as a disorder of the self, and it is a disorder profoundly linked to problems in communication and perception. And while it is a biological condition, the product of a neurological abnormality, present before birth, which affects the development of the brain, no medical tests have yet been developed to test it; instead, diagnosis depends upon behavioral observation. Autism therefore is a fuzzy category, with shifting boundaries. First identified in 1943 by Leo Kanner, it has come to be understood as a spectrum disorder, meaning that there is a continuum between the severest cases, through the mildest which may go undiagnosed, and perhaps extending into nonautistic normalcy. And it is a syndrome, meaning that it encompasses a wide variety of traits, some of which may or may not be present in any given case, and which may appear in any number of combinations. Autism is referred to as a pervasive developmental disorder, it occurs in males four times as often as it does in females, and it affects approximately a million and a half people in the United States, with a rate of occurrence now believed to be 1 in 150 (in New Jersey, where I live, it's more like 1 in 94, and the New York Times has speculated that the national average may actually be closer to this).

This disorder is diagnosed by three main criteria. The first has to do with impairments in social interaction; Kanner referred to this as "autistic aloneness." There are problems developing relationships, reciprocating emotions, and sharing interests with others, as well as a blindness to nonverbal social cues. The autistic seems lost in his or her own world, and an alien in our own. The common ground that typical individuals take for granted is simply not there. The second impairment is in communication, both verbal and nonverbal, and often includes delays in language acquisition or sometimes a complete lack of speech. Moreover, there may be a lack of imaginative play, and of interest in narrative. There may also be related problems with the processing of sensory information. At times, the individual may seem impervious to sensory stimulation, not reacting to sounds or to physical pain, while at other times he or she may be overly sensitive to certain sensory input. The third criterion is described as "restricted, repetitive, and stereotyped patterns of behavior, interests, or activity." Both simple motions like hand flapping and complex behavioral patterns may be enacted repeatedly. There is a tendency to favor ritual and routine, and to behave obsessively and compulsively. Even in mild cases, interests may be pursued with unusual focus and intensity.

The majority of autistics are categorized as mentally retarded, but of course assessing intelligence is highly problematic when dealing with individuals who may be unable or simply unwilling to speak. Only 20% attain a relatively typical level of intelligence, and are referred to as high functioning (Asperger's Disorder or Syndrome is also considered a form of high-functioning autism). Some autistics have savant skills, highly developed abilities in one specialized area, such as mathematics, computer science, music, art, architecture, mechanics, biology, or simply memorization, visualization, or manual dexterity. These autistic savants are usually well below normal in other areas, however, and autistics in general are particularly handicapped in regards to social and emotional intelligence.

One possible savant was Albert Einstein, who did not speak until the age of 5, had a great deal of difficulty with social interaction, and possessed savant skills in mathematics and visualization. The philosopher Ludwig Wittgenstein also exhibited autistic traits; this adds new shades of meaning to his famous quote, "Whereof one cannot speak, thereof one must be silent" given the mutism characteristic of some autistics, and the problems that many of them face in language acquisition. One of the founding fathers of the United States, Thomas Jefferson, may have been mildly autistic, and the same may be true of America's greatest inventor, Thomas Edison, and his modern-day counterpart, Bill Gates.

Along with intellectuals, artists appear likely to have a better than average incidence of autism, as social impairment would not be a factor in solitary creative pursuits, while visual and musical savant skills would be decidedly advantageous. Thus, Vincent Van Gogh's seizures and psychological difficulties may have been the result of the syndrome, and possibly Andy Warhol's antisocial tendencies and love of repetition; among musicians, Béla Bartók and Glenn Gould both exhibited autistic traits. Religion too, with its elements of repetitive ritual and spiritual isolation, would appeal to high functioning autistics, such as, possibly, the legendary follower of St. Francis, Brother Juniper, as well as the holy fools of Russian Orthodox tradition, and the Buddha. This sort of speculation focuses on extraordinary individuals because of their celebrity, and because history tends to ignore the ordinary and the low-functioning alike. One prominent exception, well known in the field of communication, is the 18th century wild boy of Aveyron, the subject of François Truffaut's 1970 film, L'Enfant Sauvage (aka The Wild Child). A strong case has been made that the original "wild boy" was not raised by wolves, but rather was an autistic child who had been abandoned or run off.

Accounts of autistic individuals can also be found in fictional form. Dustin Hoffman's portrayal of an autistic adult in the 1988 film Rain Man is particularly well known, and the recent bestselling novel by Christopher Haddon, The Curious Incident of the Dog in the Night-Time, takes the reader directly into the interior landscape of the autistic mind. Often unacknowledged is the fact that Tommy, the hero of the 1969 rock opera written by Pete Townsend of The Who, was patterned after autistic children Townsend had observed. Although Tommy's condition is the result of childhood trauma, his symptoms have little to do with repressed memories. Instead, he is unable to hear or see, even though there is nothing wrong with his sensory organs, and he does not speak, even though he is capable of it. Tommy spends his time gazing in the mirror, not out of narcissistic vanity, but because he is lost in his own world; and he displays savant skills of tactile dexterity when placed in front of a pinball machine. Tommy's "amazing journey" actually parallels the delayed development of high functioning autistics, who as adults gain the ability to communicate something about their experiences.
And that is worth a post in and of itself, I think, but another time.

For now, I just want to thank you for your attention, and support.

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