Researchers are challenging assumptions about the disorder
Sunday, December 29, 2002
BY CAROL ANN CAMPBELL
Star-Ledger Staff
Catherine Wersinger remembered the day she held a cup of juice in front of her son Peter, then 2 1/2 years old and diagnosed with autism.
“Say juice, Peter,” she called out. “Juice. See, juice! Juice! Just say, ‘juh’ ‘juh!’ Can you say, ‘juh’?”
Her bright-eyed boy stood stone-faced. He could not say one word. Not mama. Not dada. Not juice.
Today Peter is among the first autistic children being treated by a center that is paving new ground in the treatment of this mysterious and devastating disorder, one that many believe is on the rise in New Jersey and elsewhere. The number of children classified as autistic by New Jersey school officials has tripled in less than a decade and is now close to 4,000.
Autism hinders a child’s ability to communicate and form relationships. The most profoundly affected live in a world all their own, obsessively playing with toys, perhaps, or bursting into uncontrollable rages.
An explosion of research — much of it pushed by parents of autistic children, who have become a potent force — is challenging assumptions about the disorder and moving New Jersey to the forefront of autism research.
Doctors at the Autism Center at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School in Newark are researching the physical symptoms common to many children with autism — allergies and asthma, eczema, epilepsy, sleep problems and gastrointestinal disorders. Researchers there believe these physical ailments parallel what is going on in the brain.
Researchers at the Autism Center also are working with the U.S. Centers for Disease Control and Prevention on one of the largest and in-depth autism surveys ever undertaken. The aim is to determine the prevalence of autism in New Jersey. The first data could be available in the fall.
Researchers at the Robert Wood Johnson Medical School in New Brunswick are examining neurological toxins among autistic children. The Center for Neurotoxicology and Exposure Assessment will examine toxic exposure in autistic children who are 24 months to 36 months old.
IMPROVEMENT
The Autism Center opened just eight months ago. Doctors there see autism as a medical disorder, not psychiatric or behavioral. They have treated autistic children for their physical ailments. And, in a remarkable turn, some then improved eye contact or behavior. A few began talking for the first time.
One of them was Peter Wersinger.
Doctors at the Autism Center discovered that Peter was allergic to milk. He was put on a special diet. Doctors also prescribed essential fatty acids, a common over-the-counter supplement. Soon after, Peter began saying his first words. Doctors then prescribed Singulair, a common asthma medicine that blocks leukotrienes, compounds that play a role in inflammation and allergic reaction.
“Two weeks later Peter began forming sentences,” said Catherine Wersinger. “I don’t know why it is working, but I can’t disregard the fact that his development has blossomed.” She also credits his teachers at the Wawa House, an autism program affiliated with the Eden Institute in Princeton.
Now 3, Peter can tell a visitor that he lives in Marlboro, that his favorite color is red and that Santa Claus brings him presents. He knows several hundred words, sings “Jingle Bells,” smiles and readily hugs his parents.
The center has treated 500 patients and is one of the few, if not only, centers that bring together pediatric specialists, such as gastroenterologists and allergists, to examine the physical ailments of autistic children. The director is Sue X. Ming, a slight, 40-year-old pediatric neurologist who could pass for one of the students lugging backpacks around the New Jersey Medical School campus. She said she was always taught that autism was a psychiatric disorder. Education might help some, but really there was little for a medical doctor to do. Besides, autism was rare.
Then in the past decade, parents of autistic children began knocking on her door. Their numbers kept rising. Some of the parents had videotapes of their babies and toddlers laughing and smiling and building up considerably vocabulary. Then, at about 12 months to 18 months old, these children started to regress, losing words and eye contact. Some never talked again.
Ming said more than half of the autistic children she saw had some medical disorder. Tests showed some had unusual swings in blood pressure or heart rate, or undiagnosed seizures. Tests showed super-charged immune systems. Ming began to wonder whether the autonomic nervous system — which regulates unconscious bodily functions such as the heart rate, digestion and the immune system — might be involved in autism.
“We began to see autism as a medical disorder. Every part of the body is controlled by the brain. The immune system is controlled by the brain. Everything interacts,” she said.
Some children were put on allergy medicines. Some were treated for constipation, reflux or dietary protein intolerance. One child, found to have minute seizures that only showed up on brains scans, was treated with epilepsy medicine. Ming said a handful of the children are no longer on the autism spectrum, meaning their behavior no longer has the characteristics associated with the disorder.
“Some of our children are doing so well,” Ming said. “But we don’t have enough experience yet. We want to see if the improvements after intervention are sustained after two to three years.”
It is not clear whether treating underlying disorders merely helps the children by relieving pain and discomfort, allowing them to become more open to learning, or whether something more fundamental is going on. Ming suspects the latter, at least for some autistic children. She talks of the gut-brain connection.
“There is feedback from the body back to the brain,” she said. She will soon start to study the autonomic nervous systems of autistic children with a sophisticated instrument called a neuroscope, which measures such functions as heart rate and brain waves.
Joanne Iveson of Colonia said the center helped her daughter, Ashleigh. At preschool, Ashleigh had to be strapped into her chair. She had few words and poor eye contact. She would pull on her mother’s coat if she wanted to go outside, or she would just scream, “Coat! Coat!” She has eczema and gastrointestinal problems.
Ming discovered Ashleigh was allergic to milk and whey, a milk byproduct present in thousands of everyday products. Iveson put Ashleigh, who is 6 now, on a special diet. After three weeks, the child’s eczema cleared up. Her eye contact also improved, Iveson recalled. She started to use more words.
“She began to initiate questions. She would say to her sisters, ‘C’mon, let’s do this.’ I remember one time she said something like, ‘Can I go with you?’ I thought, ‘Wow!’ I can’t say that she is cured, but she is better,” Iveson said.
The center also is educating young pediatricians to uncover the earliest signs of autism, prompting parents to begin intensive behavior and speech therapies while the children’s brains are still malleable.
B. Madeleine Goldfarb of Livingston remembered when her son Jonathan, who was just over a year old, no longer turned when she called his name. Then he stopped pointing. He ran away while other children sat and listened at story time. She said her pediatrician told her not to worry — a dismissiveness that other parents and autism experts said is not unusual.
“Then at his second birthday, Jonathan was sitting on the couch. We had all these balloons. I kept saying, ‘Jonathan, the balloons! Look at the balloons! The balloons, Jonathan!’ But he just sat there. I couldn’t reach him. I knew then I wasn’t the crazy mother,” she said. “We were watching our intelligent, adorable, connected and loving child taken away from us day by day,” she recalled.
SOMETHING IS WRONG
Agnes Cushing Ruby remembers when she and her autistic daughter, Danielle, pushed their cart through the Pathmark in Rahway and saw two other autistic children.
“When you turn around and realize your child is the third autistic child at the grocery store, then you know something is wrong,” said Ruby, who also lives in Colonia. She believes autism is increasing. So do many researchers.
But is it a true rise in the disorder or just in the number of diagnoses?
To answer that question, New Jersey epidemiologists, along with the CDC, are now seeking to identify every autistic child born in 1992 and in 1998 in four counties: Ocean, Essex, Union and Hudson.
Researchers know that the number of children classified as autistic by New Jersey school districts has more than tripled in less than one decade. In 1994, the state Department of Education classified 1,042 children from the ages of 5 to 21 with autism. In 2001, the figure was 3,984.
Epidemiologists must discern whether doctors and school officials are better at recognizing the disorder today, or whether in years past autistic children were instead classified as mentally retarded.
Plans for the survey started in 1998, after a CDC survey in Brick Township found that one in 250 children there was autistic. The study also found that one in 175 children was on the autism spectrum. At the time, autism was thought to affect about one in 3,000 children.
Walter Zahorodny, the principal investigator of the $1 million CDC study in New Jersey, said the study will determine whether Brick Township has experienced an autism cluster, or whether the township’s autism prevalence actually reflects what is happening all over New Jersey — or all over the nation. California researchers recently found that autism in that state tripled from 1987 to 1998.
As diagnoses of autism increase, experts and parents are casting about for possible reasons, from childhood immunizations, medications during pregnancy or delivery, genetics, viruses or environmental toxins. The New Jersey Answers for Autism Survey, a separate project funded with $160,000 from the New Jersey Governor’s Council on Autism, is seeking information from all New Jersey families of autistic children.
Autism pains families and costs society, too. In New Jersey, tuition for schools for autistic children, a cost borne by the child’s local school district, can reach $68,000 each year, according to the New Jersey Department of Education. Some autistic children attend local schools, but require special aides or special classes. Some of these children may require residential care for the rest of their lives.
CHEMICAL CONNECTION
Researchers at UMDNJ-Robert Wood Johnson Medical School in New Brunswick have begun to examine neurological toxins among autistic children. The Center for Neurotoxicology and Exposure Assessment will receive $1.5 million in federal grants each year for five years.
Researchers will examine toxic exposure in autistic children who are 24 months to 36 months old. George Lambert, who directs the study, said autism often arises just as children start to crawl, walk and explore their environment.
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Were they exposed to unusual chemicals? Or are they unusually susceptible to chemicals?” Lambert asked. Scientists will go out to houses to test soil, water and dust. They will vacuum and conduct home health surveys. The study will look at mercury levels in the hair of these children and examine their vaccination history. Some people suspect the mercury used as a preservative in vaccinations could set off autism. Researchers also will examine how far these children’s homes are from underground chemical storage tanks, for instance, and their distance from toxic waste dumps.
Lambert suspects there is an actual rise in the prevalence of autism.
“People in the field feel they have just haven’t seen these numbers before. If there is an increase in autism, we probably are not seeing altered genes,” Lambert said. “That means it has to be something in the environment. We hope to possibly get at some causes.”
Carol Ann Campbell covers medicine. She may be reached at ccampbell@starledger.com or (973) 392-4148.
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