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Tuesday, August 02, 2005

The Age of Autism: The epidemic debate


Monday's column featured a letter from Kendra Pettengill of Roseburg, Ore., who challenged the idea that the huge increase in autism diagnoses over the past decade can be explained by better diagnosis. In fact, she said, something has happened to trigger an epidemic of autism in America's children.

This column features some of the wide range of replies we received.

You wonder where the adult autistics are. Well, one repairs our computer systems. He's in his fifties, self-employed, and was diagnosed as possibly schizophrenic in the 1950s.

Another, my husband, is self-employed as a writer. A sister-in-law is an archivist and research librarian. A brother-in-law is an engineer, working on government contracts. My grandfather didn't speak until he was 5. He grew up and became a carpenter.

In the youngest generation of our family we have several diagnosed autistics and several who are just under the radar. I'm not even mentioning those who have perfect pitch and have been accomplished musicians since very young ages. And I'm not mentioning the young accomplished artists, though they give pause to think.

Autistics have always been part of the population. You're not looking in the right places, that's all.

I have an 11-year-old daughter, diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), and even though I am not a scientist I do not believe this rise in autism cases is because of better diagnostics. I believe it is a combination of environmental factors that have taken place now these last 30-plus years.

One idea is to interview people who have been in the child-care business for the last 30 years. It would be interesting to get their observations. I say this because our pre-school teacher, who has remained a friend through the years, would just shake her head and tell me, "I don't know what's going on, but when I started my pre-school we never had kids with problems and now every year I see more and more kids coming in that I have to refer the parents for testing."

Very interesting, huh?

I am an 18-year-old with Asperger's Syndrome, and this is my first time writing a reply to an article like this. I went undiagnosed for a large portion of my life, struggling with many things such as social interaction and sensory issues, and not knowing why.

True, I am not on the severe end of the autism spectrum, but it does have a significant impact on my life. I am sure that I would not have been diagnosed several years ago, and that people like me who are able to function fairly well are being diagnosed more and more due to a better understanding of the lighter end of the autism spectrum. So I would say that a rise in awareness has greatly contributed to the increase in diagnoses.

The sentence "No child with autism ever went undiagnosed" is not true. I, along with many other autistics, went undiagnosed for a long time. In the past, many more severely autistic people were probably misdiagnosed.

For anyone who is interested in reading more from the perspective of adult autistics (we do exist!), I would highly recommend this website. It has many articles, written by people all over the spectrum: www.autistics.org

I just read your excerpts of Kendra Pettengill's comments and I agree with her completely. I never even heard of autism when I was growing up. My 11-year-old was diagnosed with autism eight years ago. When I am with him in public it is rare that I do not get someone telling me about their autistic child, grandchild, niece, nephew or child of a good friend.

These are strangers who know in an instant that my son has autism, as I do when I see a child on the spectrum. These children could not possibly be "missed" or misdiagnosed. How many 11-year-olds communicate with grunts and babble like infants? How many toddlers hit themselves repeatedly or fail to react to the sound of a metal pot being banged next to their head but run across the house when the Barney tape starts?

My husband and I started a school for children with autism since we could not find a good program. We get desperate calls everyday. If there were so many autistic kids before, they must have been locked up in closets! No, it is just our government that is hiding in the closet, afraid to face what they have done.

Apparently, Ms. Pettengill thinks I don't exist. She declares, in no uncertain terms, that no autistic has ever gone undiagnosed, in any time, in any place, ever.

Well, I am sorry to disappoint her, but I do exist, and so do a lot of others like me. I am autistic, and I was not diagnosed as such until I was an adult. I didn't speak at two years of age, and when I did begin to talk, it was echolalic. I persistently rocked, flapped, walked on toes, and avoided contact with other kids. I spun any object I could get ahold of.

My mother knew she had an unusual child, but she wasn't so horrified by the prospect of me not being normal that she ran right out and had me evaluated. She figured out how to relate to me, and she parented me. I learned and I developed.

I still flap, I still rock, I still toe-walk, and I still avoid social contact with others. I have obsessive interests, and I have a good deal of difficulty dealing with people. I can't handle many noises or places that are visually busy. I have virtually no ability to interpret body language or other nonverbal cues. Perhaps this is why the University of Pittsburgh Medical Center Autism Research Program diagnosed me as autistic in 2002, with full knowledge that I was undiagnosed well into adulthood.

When I was young in the early 1970s, autism was not well known. Many autistics my age that were evaluated were given diagnoses like "childhood schizophrenia" or "mentally retarded."

Being diagnosed as autistic as an adult is a lot more common than you might think. I know several autistic adults who were not diagnosed until adulthood (and I am not talking about those that were diagnosed with Asperger's Syndrome -- I mean autism). Ms. Pettengill may deny that we're autistic, but we have the official diagnoses that say we are. I have no doubt that any of us, if we were infants brought in for evaluation today, would be diagnosed as autistic.

We're here, whether people want to deny that we are what we are or not.

E-mail: dolmsted@upi.com

Copyright 2005 by United Press International. All Rights Reserved.

Posted by Becca

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