Thursday, May 23, 2013

Definition goes astray: "I want my autism back"

When my son Danny was a small child and I began to meet other parents with handicapped children (yes, that's what we called them),  autism was considered a severe disability. No one used the words "high-functioning" and "autism" in the same sentence. Causes for the condition were conjured up by "experts" who mostly blamed autism on mothers who rejected their children. Autistic kids and their parents were subjected to bizarre therapies and treatments that as far as I could tell, never cured a single one. Overall, living with an autistic child was at least as distressing as living with Danny. 

This is from an article in, 5/5/13, "Expanded definition of 'autism' goes astray" by the father of an autistic child from New Jersey. James Terminiello writes that "…Today, autism seems to encompass individuals with personality quirks and slight disorders who otherwise carry on with their lives. That fastidious guy in the office who lines his pencils in size order and has no friends may be lightly tinged by autism. On the other hand, he holds a job, owns a car, pays rent and earns $75,000 a year. Should he really be placed on the autistic spectrum?…Is this the true face of autism? As the father of an autistic prime [as he refers to the more severe forms of the condition], I would hack off my right arm to see my son suffer such a fate."

While he is grateful for the increased attention autism gets in the media and increased funding for research, it is difficult to be so positive about a condition that leaves "those who truly suffer in the dust." 

He says, "It is time to stare directly at the plain, raw face of real autism: a world of painfully slow, unrewarding therapy carried out by near-angelic professionals who suffer very high burnout rates. It is a place where marriages are wrecked or destroyed amid tears, accusations, anger and arms thrust in the air to the words 'I can’t deal with this anymore!' It is a realm where non-autistic siblings are often given short shrift by strained parents and grandparents.

"Why paint such a dark picture? Because real autism is a dark picture. By expanding the definition to include quirky and colorful individuals who make good copy, autism seems to be getting an unneeded, glossy makeover. I’m happy for these individuals, whatever their condition may be, and wish them all the best, but calling them autistic is like saying a man with a broken finger is as handicapped as a quadriplegic...As for me, I want my autism back."

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