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."
On the Trail: Autism and the Environment
A journalistic journey into autism and industrial chemicals
While that assertion is subject to considerable debate, the increasing need for the IRCA's work is not.
"I first got involved with autism 30 years ago, and the incidence was one in 5,000," Pratt said, after explaining her background is in special education. "Today, in Indiana the incidence is 1 in 113 in our school-aged children."
"Today, in Indiana the incidence is 1 in 113 in our school-aged children."
- Cathy Pratt
Pratt's education in special ed and public policy led her to the IRCA, where her office sits in the evening shadows of the IU Supercomputer. "I was a special education teacher," she said, "and oftentimes, typically, I'd end up working with children with autism."
The IRCA, Pratt explained, is one of seven centers that comprise IU's Indiana Institute on Disability and Community, located near Stone Belt at East 10th Street and the S.R. 45/46 Bypass. The mission is to provide cradle-to-grave services to disabled citizens.
"We cover the lifespan, from early intervention through aging," she said.
The director position opened while Pratt was pursuing her doctorate at IU in the late 1980s and early 1990s. She accepted the job on an interim basis in 1993 and stayed after being promoted the next year.
According to the IRCA Web site, Pratt and her staff "conduct outreach training and consultations, engage in research, and develop and disseminate information on behalf of individuals across the autism spectrum, including autism, Asperger's syndrome, and other pervasive developmental disorders."
They also work on legislation affecting Indiana citizens with autism. Under state law, the IRCA, every three years, must submit a "needs-assessment" to the state's Legislative Commission on Autism, which then works with the Indiana General Assembly to craft new and update old legislation.
The Institute and IRCA are outgrowths of IU's Developmental Training Center, which in the 1970s and 1980s provided residential programming for children with autism and other mental health issues, Pratt explained. In those days, her offices were bedrooms.
Sometime before Pratt's ascension, IU shifted the focus. "Now we're basically a research and training center," she said.
Inside the IRCA, a compact waiting area with soft chairs and a small table adjoins an airy space that still feels like a small institutional kitchenette. It's the first Friday after IU's holiday break, and the place is quiet, a little dark.
Soon after we sit at a conference table, the interview turns to the basics -- just what is autism? And where does Asperger's Syndrome fit?
"Autism spectrum disorders include Asperger's Syndrome, Autism, and Pervasive Developmental Disorders-Not Otherwise Specified."
- IRCA Web site
Most of what I have read says Asperger's is an Autism Spectrum Disorder (ASD). Children with Asperger's have impaired social and behavioral skills similar to autism but have normal to above-average IQs. But I've also found equally compelling sources that say the two are separate conditions, that Asperger's is not autism.
Pratt mentions the Diagnostic and Statistical Manual of Mental Disorders: Fourth Edition (DSM-IV), a publication of the American Psychiatry Association that provides diagnostic criteria for mental health conditions. Then she's on her feet, scanning a tall, gray cabinet full of informational materials and soon returns with a four-page IRCA handout titled "Pervasive Developmental Disorders."
"Autism is one of five developmental disorders classified as Pervasive Developmental Disorders (PDD)," it begins. "All of the disorders are referred to as syndromes. This means that diagnosis is based on a defined group of behaviors which combine to result in a disrupted pattern of development."
The document reprints the DSM-IV's criteria for the each PDD -- Autistic Disorder, Rett's Disorder, Childhood Disintegrative Disorder, Asperger's Disorder and Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism).
The IRCA's Web site clarifies: "Autism spectrum disorders include Asperger's Syndrome, Autism, and Pervasive Developmental Disorders-Not Otherwise Specified."
Autism is a vast and complex subject. Over the course of our chat, Pratt noted more than once that everyone on the autism spectrum is unique.
"The adage is, 'If you know one person with autism, you know one person with autism,'" she said.
On this blustery-cold winter afternoon, Pratt, who is also chair of the board of the National Autism Society of America, is wearing blue jeans and a heavy, dark green sweater over a white turtleneck. She takes a swig from a Starbucks grande cup and starts a lengthy explanation of just what autism is.
"One mother told me about going to 18 gynecologists to try to find somebody who would treat her daughter."
- Cathy Pratt
The onset of symptoms occurs prior to age 3, she said. Beyond that, autism is defined by a spectrum of social, communication and behavioral impairments.
The range of social challenges, Pratt said, run from those who prefer to be left alone to those who desire relationships but have difficulty establishing them. "And everything in between."
The DSM-IV adds "marked impairment" in the use of nonverbal behaviors, such as eye contact or facial expressions; a "lack of spontaneous seeking to share enjoyment, interests or achievements" with others; and "lack of social or emotional reciprocity."
Some with autism, Pratt said, are nonverbal, while others are highly verbal but lack practical conversational skills. Behaviorally, they can be over-responsive, set off by simple things, such as a change of clothes. Or they can be under-responsive, not able to feel pain, for example.
They can also manifest what the DSM-IV calls "restricted repetitive and stereotypical patterns of behavior, interests and activities." Some on the higher-functioning end of the spectrum are sometimes called "little professors" because of their focus on specific subjects, Pratt said.
Various combinations of those impairments must be present for a diagnosis of Autistic Disorder, the DSM-IV says.
Autism is a lifelong condition, Pratt added, and it is often "co-morbid," meaning it is accompanied by other mental health conditions. Mood, anxiety or obsessive-compulsive disorders, for example, are common.
"Anxiety is a really big thing for a lot of our folks," she said. "It's not unusual to see folks on anxiety medications."
All of this, of course, places tremendous burdens on the families of those with autism, Pratt said.
"One mother told me about going to 18 gynecologists to try to find somebody who would treat her daughter," she said.
And that brings the trail to the next fork -- the human side of autism.
Steven Higgs can be reached at editor@BloomingtonAlternative.com.