Monday, August 13, 2012

What Is Autism?

     Autism is a term with very limited use.  As a category it includes so many people that there are very few characteristics they all have in common.  One in eighty-five boys born in America is currently assigned the diagnosis, and one in a hundred-twenty newborns.  Girls are affected more severely--in other words, as adults they are less functional.  Boys are diagnosed four times more often than girls, suggesting a genetic predisposition that may have something to do with the X-chromosome--similar to transmission of the gene for baldness.
     My youngest son, Peter, who does not have autism, once remarked about autistic kids, "They just don't pick up on things," and, "They don't have common sense!"  He was eight or nine at the time, had a brother with autism, and spent time with other autistic kids and their siblings in a play group each week while we parents met to talk about how to help our strange autistic children.  His untactful observations pinpointed the defining features of autism:  an inability to register social cues and respond to them with fluidity, and a failure to share in the public consensus about what matters in the world.
     When my son, Carmine, was diagnosed with autism he was nearly four.  By today's standards this would be an alarmingly late diagnosis.  In fact, four years old is considered too late for effective reversal of the condition--if reversal is even possible.  Carmine was a beautiful boy, charmingly disinterested in others, preferring instead to organize VCR tapes into stacks, or thumb through piles of telephone books.  He hated clothing, escaped the house and yard frequently--even scaling, many times, the 8-foot privacy fence we constructed to keep him confined--and seemed insensate to painful stimuli.  When we lived in Pennsylvania I chased him down on three occasions--he was unaware of anything wrong--as he scampered naked, wet, in the snow, laughing, many blocks from the house.
     I have since learned that such skidoos are not uncommon for autistic children.  One young child of a friend ran headlong into a fire, and required burn treatment at Shriner's for the next three years.  When I moved my family to Florida in 1993, a young girl had just been discovered in the woods--missing three days, solitary, unclothed, having wandered far from her home in winter without food or water.  Police were astonished at her aloofness when they found her.  But I knew she must be autistic, and that her parents were probably not neglectful.  Without help, looking after an autistic child is impossible.  But help is hard to find.  My parents exhorted me, coolly, to institutionalize Carmine when he was a child.  Today this isn't even an option.  The fact is, not many people are willing to sacrifice their time for an autistic person, even if they're "family," even if they're paid.  It's just too tough.
     When a child is diagnosed with severe autism, the parents are devastated.  I was.  It soon becomes apparent that autism will be the central fact of that family's life, forever.  A long period of mourning follows.  Most marriages do not last.  Extended family supports dwindle and the child, his siblings and the remaining parent--usually a mother--become exiles.  Siblings may suffer second-hand treatment because autistic behaviors command primary attention.  But siblings move on with their lives--they have to get away from the constant requests for help.  They suffer, too, from anger and guilt.
     The physical work of supporting a child with autism--who then becomes an adult with autism--is tremendous.  Social supports are scarce, or nonexistent, and parents can expect to be isolated and overworked for the rest of their lives.  Strangers assume that the parents of these children--who behave in the odd and inconsiderate ways autistic children do--must be depriving them of discipline.  They are liberal with advice.  While grocery shopping I have sometimes been rebuked by people who said my son simply needed "a good whipping"--one man even took off his belt and handed it to me.  I know parents who have never had a full night's sleep--not since the arrival of their autistic child, who is now twenty, thirty, forty years old.
     The diagnosis of autism is more common today because specialized educational services for the condition are more intensive than those for other disabilities--hence, a child with "autism" may get more one-on-one attention in public schools.  A lot of money has been funneled into research on autism--so far, to no avail.  Children who used to be categorized as mentally retarded in the past are now labeled autistic, perhaps rightly so.  There is a veritable laundry list of proposed causes, including genes, immunizations, and environmental toxins.  Fortunately, Leo Kanner's "refrigerator mother" theory-- which added mother-guilt to the hardship and grief of parents--has been debunked.
     Like most illnesses, autism is probably multifactorial, meaning that several factors, not one, are necessary for autism to gain expression in humans.  Many advocates for autism have pointed to the benefits to society of the condition: creative geniuses as diverse as Mozart, Einstein, St. Francis of Assisi, Bill Gates and the mathematician, Paul Erdos, have been considered autistic.  There are intriguing computer programs and other technologies available for the small percentage of autistic people who truly are "locked in" by an inability to communicate in conventional ways.  These include facilitated communication--in which a caregiver prompts someone with autism to type messages on a keyboard--and art therapy, voice-activated software, scrambled music, and sensory integration techniques.
     Most adults with autism have nowhere to go and nothing to do.  They sit at home with an overworked, aging mother or father.  They exhibit "behaviors" which, at best, are socially ostracizing, and at worst put their lives in danger.
     Autistic adults do not have enviable lives, they cannot live alone, there are almost no existing communities where they fit in, and their futures are void.  This is nothing short of a tragedy for a society like ours, in America--a country which flaunts terrific wealth, is an example for the world, and promotes an image of itself as humanitarian.             

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