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http://www.southjerseynews.com/issues/april/f042803a.htm

The first of two parts By JASON NARK
Courier-Post Staff
 

Kyle Mosca stopped responding to his name at 18 months.

He avoided eye contact with his parents and twin sister and began slapping his hands. He would line up his toys for hours on end.

"If we broke the chain, he flipped out. He was just in his own little world," said Kyle's mother, Isabelle Mosca.

Eventually he stopped speaking.

"The doctors told us he was just being a boy. One told me that me and Kyle needed some time apart," said Mosca, who lives in Ventnor with her husband, Ken.

Mosca eventually learned that Kyle's peculiar behaviors were caused by Pervasive Developmental Disorder, also called Atypical Autism.

The disorder is one of several forms of autism - a lifelong developmental disability that affects how a person perceives and behaves in the world. It affects an individual's sensory perception, learning, communication and social skills.

Pieces of the puzzle

Parents of autistic children and advocacy groups often use puzzle pieces in their literature and Web sites to represent the unsolved and perplexing disorder. Autism is particularly insidious in that for the first two years, children reach normal behavioral and physical milestones, but those accomplishments seem to fade away.

Autistic children range from shy and introspective to extremely repetitive, self-injurious, and often aggressive to others.

There are aspects that show up in a majority of the cases, such as a lack of significant social play; stereotypical, repetitive or unusual use of language; restricted interests that are abnormal in intensity or focus; and preoccupation with parts of objects.

Combinations of these symptoms can all interrelate to one another, as a sensory overload forces the child to focus, almost meditatively, on one repetitive action, such as bouncing a ball for hours.

According to Dr. Walter Zahorodny, a clinical researcher at the University of Medicine & Dentistry of New Jersey in Newark, 70 percent to 75 percent of autistic children are below the level of mental retardation.

Some forms of the disorder, such as Asperger's Syndrome, see children with relatively high IQs accompanied with a disinterest in socialization. Because many with Asperger's are high-functioning, they often go undiagnosed and may be viewed as eccentric or odd. Despite their lack of social skills, children with Asperger's often excel in engineering or computer programming.

"Each child is so different though," said Zahorodny of children with autistic spectrum disorders.

"We all try to find a silver lining and autism has one - it is not progressive. They don't get worse and worse," he said. "They truly seem to respond to therapy."

According to the National Institute of Neurological Disorders and Stroke, autism is prevalent in 10 to 20 of every 10,000 people in the United States. The disorder is about four times as common in males than females and is found throughout the world.

A 1998 National Center for Disease Control study found almost one in 250 children in Brick Township, N.J., were diagnosed with a disorder on the autistic spectrum.

"That's the only reliable data in the state so far," said Zahorodny.

Zahorodny is involved in two studies to gauge how pervasive the disorder has become in the state and to find possible clues to causes.

The first, the New Jersey Autism Monitoring Project, is looking for trends, risk factors and gene interactions. Zahorodny said about 750 people have participated so far and after the study reaches 1,000 families, he and colleagues will look for trends and publish results.

Another study, called the New Jersey Autism Study, will try to identify the true number of individuals in New Jersey who have been diagnosed.

Causes

In the 1940s, psychiatrist Leo Kanner began recognizing similar patterns in children being sent to his offices at Johns Hopkins University. Kanner termed the disorder "early infantile autism" after the Greek word autism, which means "self."

A study in England in the late '70s discovered several forms of autism, including PDD, Asperger's Syndrome and typical autism. All have slightly different characteristics.

While the cause was once cruelly attributed to bad parenting (Refrigerator Mother Syndrome), researchers still have few definitive answers when it comes to autism's causes. Many believe it lies in genetics.

Studies show strong links to genetic factors - if one identical twin is autistic, there's a 90 percent chance the other twin will also have the disorder.

Others believe the environment or a reaction to vaccinations, specifically the Measles/Mumps/Rubella (MMR), can be the trigger.

Zahorodny thinks any combination of the three could be the cause.

"I think there could be a strong interaction between genetic factors and the environment, but that can't be that alone. There could be prenatal factors or toxicants related to pollutants," he said.

"The question about vaccines or mercury poisoning in vaccines is open in my opinion. The right research hasn't been made. Some parents act as if they are certain, but scientists are just not there yet."

The MMR vaccine is usually given between 12 and 15 months - an age that often coincides with the manifestation of autistic symptoms.

In 1998, a study in the British journal The Lancet first sounded the vaccine alarm. In the study, 12 children who were referred to a British researcher for bowel problems also exhibited autism-like symptoms that parents linked to MMR vaccination.

Local pediatricians say parents who forgo the shots are taking life-threatening chances with their children.

"What people never talk about with vaccines is what they are here for," said Dr. Benjamin A. Rosenblum of Atrium Pediatrics in Marlton. "You don't hear of measles, mumps or rubella too often because the vaccines work. These are very real and life-threatening illnesses.

"We don't have all the answers yet, but I certainly don't feel the vaccines are responsible," Rosenblum said. "We have three doctors here and five children between us. We've all given our children the vaccine."

In New Jersey, children can legally be exempted from vaccination only if it interferes with their religious beliefs or for medical reasons as determined by a physician.

Many parents are critical of pediatricians' knowledge of signs and symptoms of autism.

Rosenblum acknowledged an information lapse in the field but said doctors are rapidly catching up.

"One of the most important things we do is monitor the child's development," he said. "I take seriously any concern. It would be wrong to downplay it, whether or not we can't see (any symptoms) yet."

There are correlations with autism that also link it to possible biological factors. Children with autism often suffer from epileptic seizures and neurological disorders. They also show evidence of brain abnormalities, many of which are found in areas responsible for planning and control, emotional regulation and motor coordination.

As we see them

In 1988, millions of people were introduced to autism through the Academy Award-winning film Rain Man.

In the film, Dustin Hoffman plays Raymond Babbit, an institutionalized autistic man with a gifted memory and computer-like mathematical skills. Traveling the country with his younger brother (Tom Cruise), Babbit reveals the full spectrum of his disorder - obsessive behavior, an unbreakable schedule and lack of social skills.

When forced to board an airplane for the first time, Raymond rattles off a series of airline accidents. Babbit's ability to memorize train schedules and phone books is a sign of an "autistic savant." Savant-like abilities are only prevalent in 10 percent of reported cases of autism, however.

Unfortunately, the most effective therapies have only been available for a little more than 10 years. Many adults live in group homes or assisted-living facilities, such as Bancroft Neurohealth in Haddonfield. Only those who are high functioning can live independently and hold jobs.

"Every parent who has (an autistic) child is looking to the future with much concern," Zahorodny said. "They will have a bigger person, with bigger problems. People tend to be sympathetic to the children, but not so for adults."

Along with lobbying for research and funding, the non-profit New Jersey Center for Outreach and Services for the Autism Community tries to keep autism in the public eye.

"There hasn't been a lot of press; you don't see people with autism in the movies and on television very much," said Rebecca Hernandez, the organization's director of communications.

"We use Web sites, brochures, speaking engagements, schools and other community events - anything we can do to spread the word," she said.

In 2003, parents and family can look at Rain Man as a film rather than a crystal ball. With millions of dollars of research being funneled toward autism yearly, a Raymond Babbit born today may never step foot in an institution.

"Every child I see today is going to grow up to be an adult with some form of autism," said Zahorodny. "Each and every one of those children will be better off than they would have 10, maybe even five years ago."

Isabelle Mosca said intensive therapy has done wonders for 4-year-old Kyle.

"My son is not speaking in complete sentences now, but he can tell me what he wants," she said.

"When he goes to the fridge and makes himself a peanut butter and jelly sandwich, that's amazing. That's a miracle day to me."

Symptoms of autism
Insistence on sameness
Resistance to change
Difficulty in expressing needs
Using gestures or pointing instead of words
Repeating words or phrases in place of normal, responsive language
Laughing, crying or showing distress for reasons not apparent to others
Preference for being alone and aloof manner
Tantrums
Difficulty mixing with others
Not wanting to cuddle or be cuddled
Little or no eye contact
Unresponsive to normal teaching methods
Sustained odd play
Spinning objects
Inappropriate attachments to objects
Apparent over-sensitivity or under-sensitivity to pain
No fear of danger
Noticeable physical over-activity or extreme under-activity
Uneven gross or fine motor skills Source: Autism Society of America

Reach Jason Nark at (856) 486-2473 or jnark@courierpostonline.com

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