Listening to Marcella Piper-Terry detail her journey from artist to autism researcher is like any conversation with someone whose life has been touched by the pervasive developmental disorder. It sometimes takes the breath away.
Her family life has been impacted by loved ones diagnosed with multiple disorders and conditions: autism spectrum, bipolar, attention-deficit hyperactive, obsessive compulsive, pediatric autoimmune neuropsychiatric associated with Streptococcus and depression. And through it all, she has become more self-aware.
“The apple doesn’t fall far from the tree,” she says in her spacious, hardwood-floor dining room a half mile or so north of the Mount Vernon Middle School. “I can definitely see a lot of Asperger’s tendencies in myself.” Her voice slows. “I don’t do clubs. I don’t do social events. I would rather be reading and researching than having a dinner party or being part of that kind of stuff.”
Asperger’s Disorder is one of the three diagnosed types of Autism Spectrum Disorders (ASDs). It is sometimes referred to as “high-functioning autism” because those diagnosed with it can and do lead successful lives. Terry also sees Attention Deficit Hyperactive Disorder (ADHD) symptoms in herself. “My brain” — she smiles — “just goes. …”
With interests in the arts, education and psychology inherited from her mother — Elizabeth Piper, a.k.a Mrs. P, taught emotionally handicapped children in Moss Point, Miss. — Terry followed an undergraduate degree in fine art painting with a master’s in psychology and envisioned a career in art therapy.
But while earning her M.S. at the University of South Alabama, the cerebral side of Terry’s personality ascended. “Art is a very, very healing kind of thing,” she says. “That was how I went into it. But when I got to grad school, I loved the research.”
By the time Terry, husband Steve, daughter Rachel and granddaughter Leah moved to Posey County, Indiana, in 2002 after an extended stint in Washington D.C., Terry had performed hundreds of neuropsychological evaluations on children with autism and various other developmental disabilities. She had also designed an extensive “developmental history form” that her clients’ parents fill out as part of the process.
The complexities of the issues — her history form is 20 pages today — and the reactionary way of thinking in Southwest Indiana frustrates Terry to the point that she “frequently, occasionally, periodically, intermittently,” vows to quit. But she’s never given up, and her research in Southwest Indiana has continued unabated the past seven years. She hasn’t collected enough data yet to draw many firm conclusions, but she has reached one.
“These kids are different,” she says, adding that she’s pretty sure she knows why. “The reason our kids are different is because the toxins that they’re exposed to are different.”
Terry’s experience with environmental toxins is deep and personal. And it too is a family affair, especially with the heavy metal lead.
Marcella “Marci” Piper grew up in Southern California, where she inhaled lead on a daily basis. Now 49 (50 in January), Marci Terry explains: “In the 1960s, California built a ton of elementary schools on the embankments of freeways, including the one I went to. Gasoline was not unleaded until 1978.”
And, she learned retrospectively through her research, her mother suffered and died from acute lead poisoning. As a prelude, she advises: “My mother struggled with depression and was diagnosed with bipolar disorder back in the ’60s when it was called manic-depression.”
When Terry was 12, the family moved to a grand, circa 1875 house in Moss Point, on the Gulf Coast. The home, she says, was straight out of a Deep South novel — Spanish moss, pecan orchard, veranda and pillars. The house burned after the Piper family sold it, and Terry’s mother eventually bought it back. She lived there during the months-long restoration, amid constant sanding of damaged paint, which contained lead.
“She got very sick,” Terry says, her voice a slight gurgle, and she never really recovered. One particularly poignant moment will haunt her forever. As her mother, an accomplished pianist, sat frozen at the keyboard, staring at her sheet music, Marci asked what was wrong. “I can’t make my hands do what my eyes see,” Mrs. P replied.
Terry never understood what happened to her mother until she performed a neuropsychological evaluation on a D.C. child with known lead exposure. “I found out that lead mimics calcium,” she says. “It circulates in the bloodstream, but then it goes into places where calcium goes — bones, teeth, hair.”
As is her wont, Terry explains in intricate detail how lead “disregulates” calcium, forcing it out of bones and teeth and into the rest of the body, where it finds other places to settle. Her mother’s last heart surgery before she died revealed a malfunctioning, calcified valve.
But when the body is “pulling for calcium,” it leaches lead from the bones and teeth back into the bloodstream, Terry continues. “That’s during pregnancy and breast-feeding. Lead crosses the placenta, and it is transmitted in breast milk as many other toxins are.”
Lead, she explains, is an intergenerational toxin. “There’s a whole bunch of moms who grew up in Southern California and other places like it who had lead exposure,” she says, “stored lead in bone, passed on to children, in utero and through breast milk.”
Like California, Indiana has some of the highest rates of ASD diagnoses in the nation. And Terry, who still goes by Marci, says moms in the Ohio River Valley today pass on far more than just lead to their sons and daughters’ developing bodies. She excuses herself and quickly returns, obscuring the name at the top of a multicolored sheet of paper, pointing at erratic lines on a graph.
“This is a hair analysis,” she says. “This costs $65. What it shows is, his aluminum is high, antimony, arsenic, barium, beryllium, bismuth, cadmium, lead, mercury.”
Terry evaluates children who live in the coal-burning power plant capital of the world, where toxins literally float in the air, she says. “In the summertime, the number of particulate-matter days is unbelievable here. The stuff that hangs in the air that causes the haze is a mixture of stuff that comes out of the coal plants.”
She ticks off some of the chemicals her lab results have routinely shown in Southwest Indiana children: “Antimony, arsenic, aluminum, cadmium, bismuth, vanadium. All of those things that are in coal.”
The Terry family moved to Southwest Indiana in November 2002 from Silver Spring, Maryland, which Marci calls the most progressive county in the United States when it comes to learning disabilities and education. The transition, she says, “was a very, very big eye-opener.”
The family had moved from the Gulf Coast to Washington, D.C., so she could pursue a doctorate in clinical psychology at George Washington University. She was accepted and paired with a psychology professor who specialized in heterosexual HIV risk behaviors, an area she worked in before leaving the South. But she abandoned the idea when she and Steve decided to adopt her granddaughter. Instead, she went to work for a clinical psychologist.
Susan Van Ost is a Ph.D. who specializes in “educational, neuropsychological and personality assessments for children and adolescents” in Silver Spring and Bethesda. While working for her, Terry developed the protocols and style for conducting evaluations that she uses today.
When Steve retired from the Air Force and accepted a contract position with the National Weather Service in Gibson County, Ind., Marci applied for and got a consultant position with the Evansville-Vanderburgh School Corp. (EVSC), testing children for ADHD, learning disabilities and other conditions. Working at EVSC was her first, but not her last, experience in culture shock.
“After about six months, five or six months, we came to a mutual decision that I was not going to be going back there,” she says.
Terry was licensed to practice in Maryland, but under Indiana laws she can work only under the direct supervision of licensed care providers, like psychiatrists, psychologists or school psychologists. In June 2003, she went to work for Dr. Louis Cady, a “very progressive” psychiatrist with an office in Newburgh, a river town just east of Evansville.
Cady had a naturopath working with him and was open to working with Terry, allowing her to resume her regimen of testing and evaluation. And that, she says, was something that no one in the area had ever seen the likes of. “My reports were sometimes 30 pages long, 27, 28, 30 pages long,” she says. “They were Susan Van Ost reports. That’s what I learned from her.”
It was during her tenure with Cady that Terry discovered the Autism Research Institute and its Defeat Autism Now! program, which, according to its Web site, seeks to “find, test, and promote safe and effective treatments for a disorder that many medical professionals still consider untreatable.”
With Cady’s support, Terry became a Defeat Autism Now! care provider, one of only four in the entire state of Indiana. While most of her clients live in the tri-state area around Evansville, they have traveled from as far as Arizona to avail themselves of her services.
A Terry consultation is involved. She spends three hours, minimum, on the initial evaluation. Clients fill out her developmental history form, which asks in great detail about pregnancy, birth, the child’s health history, the family history and much more. She then spends several more hours analyzing and preparing a report on the data she has collected.
While working with Van Ost, Terry says, she probably evaluated 500 kids “on the spectrum.” What she considers the spectrum, however, extends beyond the three types of ASDs — Autistic Disorder, Asperger’s Disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). Her spectrum runs from “mild ADHD, or executive dysfunction, all the way to profound or severe autism.”
In Terry’s D.C. practice, the kids who struggled the most were those with visual processing problems, she says, “and it was rare. It was a handful.” In the 120 or so evaluations she has done on Indiana kids, “that’s what I see all the time.”
Visual impairments, she says, are symptomatic of heavy metal poisoning. “You can’t make your hands do what your eyes see.”
Editor’s note: This story is the second in a series on autism and the Southwest Indiana environment. Click here to read the first.