Westborough Mom Questions Recent Study on Autism

Ilyse Levine-Kanji, a member of the school committee, lives in Westborough with her husband and two children, the oldest of whom has autism.

by Ilyse Levine-Kanji

Last week the Centers for Disease Control and Prevention (CDC) announced that autism affects 1 in 88 children in the U.S. – and 1 in every 54 boys. This constitutes a 23 percent increase in autism spectrum disorder (ASD) cases from 2006 to 2008, and a 78 percent increase since 2002. The medical community is not labeling the skyrocketing increase as a “national health emergency,” but merely, as the CDC contended in its press release, an increase “due to the way children are identified, diagnosed and served in their communities.” 

This “better diagnosis” argument rings false with most families I know with autistic children, including my own (my 13-year-old son, Sam, has autism). No one in my or my husband’s family has autism – no siblings, parents, grandparents, great grandparents, aunts/uncles, cousins etc. In fact, growing up neither of us knew anyone with autism – although we certainly have a wide community of friends with children on the spectrum these days. Statistics and common experience demonstrate that autism simply wasn’t evident twenty years ago, as it is today.

People make two additional arguments to support the “better diagnosis” thesis, which similarly miss the mark. First, children with autism weren’t “picked-up” by doctors, and second, children who are now considered “autistic” were previously diagnosed with another condition like “mental retardation” (MR). It’s inconceivable that Sam could have been “missed” by a pediatrician twenty years ago – or diagnosed with MR. When Sam was about 18 months old, he lost his ability to point and speak “normal” words. He retreated into his own world where he was obsessed with pressing the same button over and over on mechanical toys, had uncontrollable tantrums if routines weren’t strictly adhered to, and showed absolutely no interest in any of the loving people around him.  Sam also had a multitude of physical problems, including an inability to sleep, gastrointestinal issues, allergies and low muscle tone. I have no medical training, but it was crystal clear to me when Sam was a baby that there was something terribly wrong with his development.

It was also clear from an early age that Sam had at least average intellectual capabilities and was therefore not “mentally retarded.” He knew the alphabet and the numbers 1-10 by 18 months. Sam has always done grade level math at school and is currently earning an A- in a regular education French class in middle school. Sam has savant-like qualities of being able to tell you what day of the week your birthday will fall on, going backwards or forwards 50 years or so, and excels at playing the cello in his middle school orchestra. I’m also happy to report that despite his oddities and continued difficulty communicating, Sam knows he’s an important, valued member of our family and his school community.

Related to the argument that the CDC’s numbers are merely better “diagnosing,” is the disheartening fact that most of the government’s research dollars continue to be spent on trying to locate a genetic basis for the disorder – rather than investigating what in our environment has changed to cause the alarming increase in autism. If genetics were the sole cause of autism, one would anticipate a fairly stable rate of autism generation to generation – not the changes of the velocity and magnitude that the CDC’s figures represent. The epidemic of autism now afflicts over 1percent of this generation of children. When will the CDC sufficiently fund the environmental research that is needed to unravel the mysteries of this devastating disorder?

Finally, the figures released by the CDC last week relate to children born in 2000, who were examined in 2008 to see how many met the diagnosis for autism by their eighth birthday. We have no idea how many children born today have ASD. You may have read that the American Psychiatric Association has proposed changing the definition of “autism” in the upcoming DSM-5. Since there is still confusion about the actual number of autistic children and the magnitude of the increase in diagnosis, doesn’t it make sense to maintain the current definition until we figure out the scope of the problem?

April 2, 2012 was the 5th annual World Autism Awareness Day. In those past 5 years, the rate of autism has skyrocketed so chances are you now know someone affected with ASD. It is my hope that five years from now we will have a better understanding of what has caused the explosion in autism and a better sense of what it will take to reverse the trend. Hopefully awareness today will save children and families in the future.