'On the Trail: Autism and the Environment'
As the national focus on the H1N1 pandemic rages, additional evidence of a more insidious epidemic has emerged, with an all-too-expected shrug from the mainstream media. Results from two federal studies announced in October say parents have a 1-in-100-or-greater chance of having a child with an Autism Spectrum Disorder (ASD). Since boys are four times more likely to have an ASD, their odds are as high as 1 in 60.
On Oct. 2, Health and Human Services (HHS) Secretary Kathleen Sebelius told the press and about 50 members of the autism community that an unreleased Centers for Disease Control and Prevention (CDC) study shows the incidence of 8-year-olds with ASDs born in 1996 is 1 in 100. The agency's last two studies of children born in 1992 and 1994 put the chance at 1 in 150.
On Oct. 5, the journal Pediatrics published the results of HHS's Maternal and Child Health Bureau's "2007 National Survey of Children's Health," which showed 1 in 91 children between the ages of 3 and 17 had autism.
Positive developments on the freelance writing front nudged me back onto the trail of autism and the environment during the past few weeks. Specifically, an approaching deadline for a story in the IU Alumni Magazine refocused my writing and landed me in a group home for three young adults with autism near Mooresville. (I'm also in discussions with a national magazine for another story and two publishers about writing a book on the subject, but those are tales for another time.)
The IU Alumni story retells much of what I've already written in the Alternative about autism's prevalence, diagnosis, causation and treatment, but I needed a fresh subject to build the story around, to "featurize" it, as I tell my reporting students. And serendipity had already played a role in determining who that would be, not to mention reinforcing my belief that we are experiencing an epidemic of autism in America. That's how I ended up in Mooresville.
Writing the piece also put me in touch with some leading figures in a science-based movement that argues toxic industrial chemicals are an environmental hit, if not the environmental hit, responsible for the epidemic of autism and other developmental disabilities.
Editor’s note: The following article was originally published in NUVO, Indianapolis’ alternative newsweekly. Since its publication on March 4, 2009, a study from the University of Northern Iowa has found children living within 10 to 20 miles of toxic waste sites in Minnesota to have twice the rate of autism as children living farther away.
When it comes to autism and the release of toxic chemicals into the environment, Hoosiers play second fiddle to no one.
A 2008 article titled “Increasing Incidence of Autism Spectrum Disorders Continues in Indiana” noted that Indiana’s autism rate is above the 1 in 150 children that the Centers for Disease Control (CDC) found in a 2007 study.
"Last year 1 in 128 students were served under the eligibility category of autism spectrum disorders," Indiana Resource Center for Autism (IRCA) Director Cathy Pratt wrote. "This year's identification rate is 1 in 113."
From what I have learned about the connection between autism and the environment these past many weeks, Dr. Christopher McDougle is the man in Indiana for questions like: How is environment defined when experts say they believe genetic predispositions for Autism Spectrum Disorders (ASDs) are triggered by environmental factors?
When I asked professionals working for children’s environmental health in the Hoosier state to recommend sources, McDougle topped their list. His resume includes: 1986 graduate of the IU School of Medicine and a child psychiatry fellowship at the Yale Child Study Center, one of world’s leading research centers on autism.
Another global leader is the treatment center McDougle started at IU’s Department of Psychiatry, where he returned in 1997, after seven years on the faculty at Yale, to head the child and adolescent psychiatry section. He was promoted to department chair three years later.
“We now have the largest autism clinic in America,” he said of the Christian Sarkine Autism Treatment Center, which is located in the Riley Hospital for Children in Indianapolis.
As clinical director at an IU School of Medicine autism treatment center, Naomi Swiezy is, by nature, a goal-oriented health-care practitioner. A researcher as well as a behavioral psychologist, her focus is on “research-based, empirically supported” approaches to treating the pervasive developmental disorder.
She uses the term “treat” advisedly. Like any expert in the field, she can only speculate on what causes the range of behavioral, social and intellectual impairments known as Autism Spectrum Disorders. Genetic predisposition triggered by unknown environmental factors is the prevailing wisdom. “Cure” isn’t a part of the vocabulary.
“It’s not about curing the autism,” Swiezy said during an interview at the Christian Sarkine Autism Treatment Center at Riley Hospital for Children in Indianapolis. “We don’t believe that’s a possibility.”
Autism is, in fact, a relatively new and little-understood condition, she said.
For Nila Sunday, the term “refrigerator mother” is more than a historic and discredited theory on the cause of autism. It’s a real and painful memory for the mother of one of the first autistic children in Indiana to be diagnosed.
The phrase was coined by Dr. Leo Kanner, an Austrian psychiatrist who first identified autism in 1943, 21 years before the birth of then-Nila Inman’s twin sons Kevin and Keith. In 1949, Kanner cited a "genuine lack of maternal warmth" and "parental coldness” as common threads in the families of children with autism.
“That was the first thing that I started to hear,” Sunday said. “And that was exactly the opposite of the way I was with my kids.”
Craig Williams chuckled when he recalled his son’s first foray onto the basketball court. Instead of missing the backboard or kicking the ball out of bounds like his less-than-athletic pee-wee peers, he flung it into the Bloomington Sportsplex bleachers.
“I’m sitting there in the stands thinking, ‘That is different,’” dad said with a smile. “That is not like the other kids at all.”
Williams sprinkled a 61-minute conversation about his son with similar moments of reserved but good humor. But his countenance hardened when he reflected upon a recently unearthed photograph of father and son at 9 months old.
“That was before I knew he was autistic,” he said.
With my background in writing about environmental health, it was pretty much a given that this investigative sojourn into the realms of autism and industrial chemicals would begin with sobering science. And, as expected, it turns out that respected research voices say toxins in the environment may be a factor in the development of autism and other pervasive developmental disorders.
At the very least, their works show, the connection between pollution and developmental disorders must be more thoroughly studied and understood.
For me, the same is true of the effect in this cause-effect investigation. So, in early January, I drove to the east side of Bloomington to interview Cathy Pratt, director of the Indiana Resource Center for Autism (IRCA). She educates parents, families, policy makers, educators and anyone else, including journalists, who need to understand the challenges faced by those who confront what some say is an "autism pandemic."
I have to admit it. My eyes welled when I heard Chief Justice John Roberts call Barack Obama "Mr. President." And no, I couldn't count the number of times chills raced through my body, or smiles consumed my face, on that historic day. Wouldn't even venture a guess.
As a child, my political consciousness was weaned on the civil rights movement. My clearest and most tangible memory from those historic days is of the morning after Martin Luther King Jr.'s assassination. I worked at a sporting goods store in Indianapolis that sold out of ammo first thing in the morning.
So, you could count me among those who would answer "No" to the question du jour on Inauguration Day, "Did you ever think you'd see the day?"
The trail had me looking back this past week to some lengthy conversations I had in the summer of 1999 with Lynton K. “Keith” Caldwell, one of the world’s great environmental thinkers.
The catalyst for this directional about-face was Ball State University’s “Hoosier Poll 2008” that found a majority of Indiana citizens said they would pay more taxes to protect the environment. That reminded me of the column I wrote in the long-defunct Bloomington Independent that caught Keith’s attention back in '99.
In the piece, I argued that corruption was the reason Indiana politicians defied the latest polls of the time that showed a majority of Americans, including Hoosiers, recognized the multiple environmental crises humankind faces and wanted their leaders to act.