New Jersey Takes The Lead In Confronting Autism

[New Jersey] -- 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.

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.

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.

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.

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.

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.

"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.

"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

Faith of family, parish guides autistic child to first Communion

By Rebecca Drake Catholic News Service

BRIMFIELD, Mass. (CNS) -- A few years ago Bridget Zietkowski wondered if it would ever be possible, but on May 10, the day before Mother's Day, her 10-year-old daughter, Alicia, received her first Communion along with 20 other children from St. Christopher Parish in Brimfield.

While a child's reception of first Communion is a joyous occasion for all Catholic families, it was especially sweet for the Zietkowskis because Alicia is autistic.

With the blessings of the pastor, Father Walter Swift, and religious education coordinator Valerie Bernier, and the help of first Communion teachers Linda and Richard Lindsay, Alicia was welcomed as a communicant into the faith community of St. Christopher.

"She has a sense of what it (the Eucharist) really is," said Alicia's father, Robert, confirmation teacher at the parish.

The news of Alicia's first Communion was also greeted with joy by Sister Joan Magnani, a Sister of St. Joseph who is associate director of the Springfield Diocese's Bureau for Exceptional Children and Adults, a ministry to individuals with developmental disabilities.

"We finally are integrating children with autism into the parish," Sister Magnani told The Catholic Observer, Springfield's diocesan newspaper, in a telephone interview. She explained that this has been the goal for the ministry for the last 10 years and she commended the family and the parish for addressing Alicia's needs.

The way the family tells it, though, much of the credit goes to God and the Holy Spirit, who led their child to express a longing for the Eucharist.

Diagnosed as autistic at age 2-and-a-half, Alicia had been attending Sunday Mass along with her parents and her siblings: Juliette, 12; Philip, 9; and David, 6. Alicia would walk with her parents up to the priest or eucharistic minister at Communion and either her mom or dad would place a hand in front of Alicia, indicating that she would not be receiving the Eucharist.

"She is a tall girl," Bridget Zietkowski said during a May 8 interview with the Observer, and they feared the eucharistic minister or priest might offer her the Eucharist, not knowing she had not made her first Communion.

One Sunday about three years ago, though, it happened: While she was momentarily distracted, Alicia stepped up to the eucharistic minister, said "Amen" at the proper time, received the host and returned to her seat where she remained peacefully during the rest of the Mass.

Although impressed with the calming effect the act of receiving the host had on Alicia, her parents asked her to stay in the pew during Communion at subsequent Masses.

"She (Alicia) would say, 'It's not fair, it's not fair' every time the priest began the consecration after that," Bridget Zietkowski recalled. Having been told by several priests previously that Alicia might not understand enough to receive this sacrament, the Zietkowskis decided that they would nonetheless sign Alicia up for the first Communion class at St. Christopher.

Bridget Zietkowski attended each class with her daughter, helping her to complete the class projects and assignments. To her mother's pleased surprise, Alicia knew the prayers and was able to answer questions about "things I didn't think she knew."

For Robert and Bridget Zietkowski, raising a child with special needs is a challenge to be addressed equally through educational and behavioral treatment and through the nurturing of their family faith life.

"When you have a house full of children, your prayer life becomes very active," Bridget Zietkowski commented.

"It's the responsibility of parents to teach their children faith," her husband said at the reception following the first Communion Mass. "We're their first teachers and are responsible for their moral foundation.

"When we first found out (about Alicia's autism), I thought, here's a little girl God has blessed us with who won't be like other children. ... We can't do it ourselves, we have to ask God and the Holy Spirit to help us," he continued.

Bridget Zietkowski agreed there is more stress for families who have a special-needs child, but it is a blessing, too. And she emphasized, "Religion has always been important to my husband and me."

"We're raising all our children to love their faith," she said. "The most valuable thing is their spiritual health. It's the only thing they can take with them."

http://www.nccatholic.org/news.php?ArtID=989
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Autistic child's memory lives on in wildlife trail

Monday, May 19, 2003

By BARBARA WILLIAMS
STAFF WRITER

Daniel Fiddle's family envisioned him running along a path, chasing a dog, and looking for signs of wildlife Sunday afternoon on the newly created Wildlife Habitat Trail at High Point Farm.

But the Ridgewood boy, who was autistic, was there in spirit only, having suffered an accidental death in January 2000, when he was 9 years old. His memory lives on with the trail, however, which was dedicated to him Sunday under a clear sky in Montague.

"I always dreamed Danny would live and work in a place like this, and he would have just loved this," said Linda Fiddle, Daniel's mother. "Maybe this will help open the way for a lot more opportunities for adolescents and adults living with autistic spectrum disorders."

The trail was created through the combined efforts of a Boy Scout troop, a foundation in Daniel's memory, and the Fountain House, a non-profit organization that owns the property and runs programs there for the mentally disabled. The trail spans two miles and includes benches, four viewing sites, and a picnic area.

Stephen Kovalchik of Clifton, who knew a friend of Daniel's through scouting, thought of the idea while looking for a project to earn his Eagle Scout award. He worked with about 15 other troop members for two weekends last fall, locating spots for viewing sites, clearing brush, building benches, and laying down wood chips.

"I really wanted to get back to the outdoors for my project - I was just hoping the areas weren't going to rebel like in other spots," Kovalchik said. "But there was minimum vegetation, and the trail actually came out better than I thought."

A good portion of the funding for the trail - $7,500 out of $10,700 - came from the Daniel Jordan Fiddle Foundation, which was established in Daniel's memory to fund programs benefiting adolescents and adults with autistic spectrum disorders, or ASD.

Although the Fountain House does not generally work with neurologically disabled people such as those with ASD, Fiddle thought the interaction between the members and scouts was a fitting tribute to her son.

"I saw while Danny was growing up that there were many programs for very young children ... but as they got older, there really weren't many things for them," Fiddle said. "Having people from the Fountain House work with people who are not mentally disabled is very important, and I'm hoping more programs will be started like this one."

The Fountain House, located in Manhattan, has 1,300 members, all with psychiatric disorders. The organization owns High Point Farm, part of a 477-acre park on the border of New Jersey, New York, and Pennsylvania. It provided the remainder of the funding.

Members stay at the farm for a week at a time, helping to care for the livestock, tend the garden, package farm-grown vegetables and fruits, and cook and serve their own meals. A number of them helped build the nature trail.

"It's a way for our members to get back into working, to being productive, to get back to their lives," said Susan Sena, assistant director of Fountain House. "It's also just nice just for them to get out of the city."

The farm and trail are not open to the public except for a few days in the spring and fall. Dates will be posted on the Fountain House Web site: www.fountainhouse.org.

"This is such a good place. I worked to put the wood chips in and helped clear the trees," said Keith Winchel, a Fountain House member. "It's beautiful. I'm kind of shy so I like being out in nature and I feel very comfortable here."

http://www.northjersey.com/page.php?qstr=eXJpcnk3ZjcxN2Y3dnFlZUVFeXkyJmZnYmVsN2Y3dnFlZUVFeXk2MzgwNjE2

A mom's will overcomes the confines of her son's autism

Monday, June 09, 2003
Interior space. Florence Reichenberg's art.

Her job, her obsession, her life.
A mom's will overcomes the confines of her son's autism
Monday, June 09, 2003

Interior space. Florence Reichenberg's art.

Her job, her obsession, her life.

"To get out what I know is in there. To make it useful. To make him useful."

Now she is not speaking as the interior designer, a managing principal for IA -- Interior Architects, an international firm that specializes in, only designs, interior space.

No, now, Florence Reichenberg is a mother.

To Steven, 11.

Her job, her obsession, her life.

"I've spent years doing whatever I had to do, going wherever I had to go, so that Steven would have whatever he needed."

It cost her. Plenty. Financially. Professionally. Emotionally.

"Ended my marriage," says Reichenberg, who has two older children.

Steven lives in his own interior space. He is autistic.

But he is learning. And he is no longer falling to the floor, thrashing about, making bizarre noises, forcing others to restrain him.

"He is a little boy again," says Reichenberg, whose eyes rarely leave her son. Her son's eyes rarely fix on anyone else's.

"Steven is not a problem. He's not an issue. He's a little boy."

We watch Steven learn in a basement classroom in St. Luke's Episcopal Church in Peapack and Gladstone. His mother. Two teachers. The school director. In a private school called the Somerset Hills Learning Institute that rents space from the church.

All of them, all of it, here -- because, when Reichenberg could not find what she thought was the right school for her son, she created her own.

It became her obsession.

"My parents built a life here after they survived the Holocaust," she says of Theodore and Esther Block, who owned furniture outlets in Newark. Florence was born in a German refugee center 52 years ago.

"If my parents could do that, I could create a school for my son."

Created it first in the basement of her home in Suffern, N.Y. Then moved it here when she moved to Basking Ridge.

First deciding which approach to use -- behavioral analysis, it's called. Based on Skinnerian psychology. Action-response -- repeated constantly until learning occurs.

Then trying to find a school that practiced it -- Princeton Child Development Institute is one. But the waiting list was long. She could not wait. Steven could not wait.

"The approach is most effective with early intervention," she says.

Then, Reichenberg found an educator who did what she wanted to be done. In Kansas, getting his doctorate, running his own school.

"I did whatever I had to do to bring him here so he could start this school," she says of Kevin Brothers, the institute's director. "He was the educator we needed."

She and the parents of five other children each raised $50,000 to start the school. By 1999, she had state approval -- that meant children could attend tuition-free, their home public school districts paying the $60,000 annual per student cost.

Recently, the school had its first graduate. A child who went back to the public schools. The regular classes. No special education. No aides.

"That is what we do," Brothers says. "We want these children to lead a normal life. To be in the regular schools. To live independently."

The instruction: One teacher, one student. The planning, the paperwork, is extraordinary. Each child has a binder thick with graphs measuring virtually everything the youngster does for almost every moment at school -- then at home.

It appears almost ritualistic. A teacher talks to Steven in a script. It's about what he likes, what he wants. He memorizes the script, but then words are left out and he has to supply them. Steven is learning how to generalize. To talk.

"We all do something like it," Brothers says. "It's just taking Steven longer."

Every activity is reduced to its simplest steps. Steven's progress through each step is monitored, recorded -- and repeated, if he fails. Brothers, aware of the controversy attached to Skinnerian psychology, doesn't want to talk about it in those terms. But what is going on in this room is reminiscent of B.F. Skinner's classic book, "Walden Two."

"We blend compassion and science to enable as many children as possible to live as independently as possible" -- is how Brothers describes the approach.

The school, opened in 1999, already has a wait list of 200. It can grow a little -- from 15 to, perhaps, 25. Adding more would destroy the school, Brothers says.

"But I believe in this approach so strongly," says Reichenberg. "I would help any group of parents who want to start their own school. The way I did."

The school day is over. She waits for her son. To take him home. Florence Reichenberg recites all Steven's triumphs, big and small. A visit to the dentist without incident. A part for him in his big brother's bar mitzvah.

"This school was a lot of work, a lot of time. It's worth it. I have my son back."

Bob Braun's columns appear Mondays and Wednesdays. He can be reached at rjbraun@webspan.net or (973) 392-4281.

Piano virtuosity helps man with autism get his life in tune

Wednesday, June 25, 2003

By PETER J. SAMPSON
STAFF WRITER

Photo by: THOMAS E. FRANKLIN

Paul DeSavino Jr., 34, of New Milford, who has autism, performing Bach's Prelude in C major at Carnegie Hall as his teacher, Cosmo Buono, turned pages for him.

NEW MILFORD

Paul DeSavino Jr. sits at the upright piano in a group home, thumbing through sheet music for several minutes before settling on the Beatles classic "Yesterday."

His rendition is choppy, almost unrecognizable at first; marked by frequent pauses, repetitions, an occasional sour note.

Coaxed by his mother, he reluctantly plays the Bach prelude he has practiced daily for months and performed a few weeks ago during a recital at New York's famed Carnegie Hall. This time, fingers caress the keys with the ease of an accomplished pianist. The performance is perfect.

The contrast is startling and symbolic of the struggles and measured advances of a 34-year-old man trying to control his world. As he leaves the piano, he juggles a small football, his security blanket.

DeSavino has autism. He is one of an estimated 1.5 million Americans with a neurological disorder that impairs development of the brain in the areas of social interaction, communication skills, and behavior.

Mild-mannered and quiet, DeSavino might give the impression he's disinterested, but he takes in an awful lot, says his mother, Marlene DeSavino of River Vale.

"He's verbal," she said. "Sometimes he has a difficult time understanding what you're saying. The information goes in; he has a hard time getting the information out."

His life is busy; one in which he is constantly striving for greater independence and responsibility. Between piano lessons, group activities, meetings, and chores, he has a clerical job, attends a computer skills program, and volunteers three days a week at a hospital. He makes his own transportation arrangements and is learning about budgeting money and banking.

The strides DeSavino has made were never more evident than on June 1, when, seated at a black baby grand Steinway at center stage, he played Bach's Prelude in C major from the "Well-Tempered Clavier" at Carnegie Hall's Weill Recital Hall.

The recital, organized by his piano teacher, featured 30 Bergen County students from beginner to concert repertoire.

"He played flawlessly," said his mother, a former dancer with the New York City Ballet. "He held the last chord down and then he raised his hands, and that was it. It was awesome."

And while DeSavino is making significant headway with his music, he still requires help dealing with everyday life situations.

With his psychologist, his mother said, he has been working on identifying behaviors and dealing with feelings of anger, disappointment, and frustration, "rather than remaining quiet and having them fester inside, or acting out in an inappropriate way."

"He's rather a perfectionist, and that's very frustrating to him," she said.

DeSavino was singing from the time he could make sounds. He has perfect pitch and a beautiful voice. He surprised his parents when, at 5 or 6, he started going to the piano and sounding out tunes by ear. Because of his autism, he was too distracted to take lessons.

"He really didn't begin studying until about five years ago," said Marlene DeSavino, noting that the piano has become a "wonderful way to stimulate and sharpen the intellect."

"It was great for him because it was at once a challenge and a comfort." He realized he could make music and "that people enjoyed it and would applaud and compliment him, and naturally that was good for his ego."

To commemorate Autism Awareness Month in April, DeSavino performed at the Alpine Learning Group school in Paramus on piano and sang a pair of jazz tunes, accompanied by his father on guitar.

Among those enjoying the event were his counselors and three housemates at the New Milford group residence run by the National Institute for People with Disabilities of New Jersey.

"It was such a great experience," said Susan Liatsis, supervisor of the New Milford house.

"He's starting to put himself out there a little bit," she said, adding that after the concert he was going up to people, smiling and making contact.

DeSavino's piano teacher, Cosmo Buono, said his student has no trouble communicating musically.

"I admire the fact that ... life has more challenges [for him] than for most of us and he's always very positive. He doesn't shrink from a challenge when I give it to him. He's always open to what I try to get out of him as a teacher, as a mentor. And I admire his tenacity and his enthusiasm."

Queried about his Carnegie Hall performance the day after the concert, DeSavino yawned, "I think it was a nice performance."

Was it one of your best? "Yes." Did a lot of people applaud? "Yes." Standing ovation, too? "What is standing ovation?" Given an explanation, he said, "I didn't see that."

"No, he didn't get a standing applause. He'll tell you the truth," his mother interjected.

How did it feel to be on stage? "Nervous." And when he heard the clapping? "I think I felt better. I don't know how I felt." Did you enjoy it? "Yes, I enjoyed it."

"Were you happy you played well or were you happy it was over?" asked Ozzie Duran, the group home's assistant supervisor.

"I think I was happy it was over," he replied.

Did he make any mistakes? "Just one little mistake." And what was that? "I didn't press on a note hard enough."

Peter Sampson's e-mail address is sampson@northjersey.com 6395325

Missed connections

Monday, June 9, 2003, By ABIGAIL LEICHMANSTAFF WRITER

Characteristics of Asperger's Syndrome

Extreme inability to read or interpret social cues.
Difficulty understanding other people's feelings.
Difficulty judging personal space; motor clumsiness.
Marked impairment in the use of multiple non-verbal behaviors such as eye gaze, facial expression, body posture, and gestures to regulate social interaction.
Difficulty in developing age-appropriate peer relationships.
Hypersensitivity to loud noises, clothing, food textures, and odors.
Impaired speech and language skills in volume, intonation, inflection, and rhythm; may exhibit "professorial" speaking style.
Inflexible or obsessive adherence to routines; repetitive behaviors.
Preoccupation with a particular subject to the exclusion of all others.
Socially and emotionally inappropriate responses.
Strong sense of honesty, justice, and fairness.
A desire to be helpful, obedient, and accommodating.
Strong ties to home and family.
Creativity in several areas of interest.
Uncompromising principles.
High personal standards.
Good organization skills.

For more information: Contact the Asperger Syndrome Coalition of the United States, asperger.org,
ASPEN, aspennj.org, or one of the following chapters:
Bergen County (meets in Haworth), Dodie Rouse or Lottie Esteban, (201) 391-0758.
Northwest New Jersey (meets in Dover), Janice Lemmo, (973) 541-0178.
Adult Issues-North Chapter (meets in Ridgewood), Mary Meyer, (201) 825-3286.
- Abigail Leichman

Susan Meyer is 28 years old, and she's never had a friend. It's not hard to figure out why.

If you talk about a topic that bores her, she can't feign interest. If you tell a joke, she won't get it. When she gets started on one of her favorite subjects - miniatures or medieval legends - she can go on for hours.

"I tell people, 'If you lose interest, stop me, because I won't know it.' The chemical neurotransmitter that would give me that message either isn't there or doesn't work," Meyer said.

In a nutshell, Meyer has described a major symptom of Asperger's syndrome, the neurological malady that has doomed her and thousands of others to a lonely life and dead-end jobs despite higher-than-average intelligence. Until nine years ago, this autism-related disorder went unrecognized, and kids who had it were simply labeled "weird."

"When the diagnosis became official in 1994, schools finally had a place to put that weird kid they'd been diagnosing with ADD or whatever," said Meyer's mother, Mary, who heads the northern New Jersey adult chapter of the Asperger's Syndrome Education Network (ASPEN).

An estimated one out of every 1,000 people suffers from the syndrome, named for the Austrian pediatrician who first described it in 1944. Much progress has been made in identifying children with the disorder, but there remain thousands of adults who never received a correct diagnosis.

Susan Meyer, who saw psychiatrists from the age of 5, was given a name for her problem only after a social worker friend gave the Meyers an article about Asperger's when Susan was in college. By that time, the young woman was seriously depressed.

Every week now, Susan Meyer attends a social-skills group at West Bergen Mental Healthcare in Ridgewood. Through ASPEN, her mother had pushed for its creation in 1999. Now, the mental-health facility runs two Asperger's groups for 25 adults and 14 groups for some 95 children.

Janet Carozza's 25-year-old son, Bobby, is a participant in Susan Meyer's group. Bobby holds several part-time retail jobs, and the group helps him deal with unpleasant situations caused by his unusual demeanor.

"He's had customers say, 'Are you a moron?'" said his mother. "The only times people have befriended him it was to manipulate him or take advantage of him."

Dr. Jeanne Marron, clinical director for Asperger's services at West Bergen, said the above-average intelligence of most of her clients makes it possible to teach them how to read and react to social cues, an instinctive skill they lack.

For example, she shows them movies with the sound turned down, guiding them to examine the changes in people's expressions during emotional scenes. "One study showed that people in the [Asperger's] spectrum only focused on the mouth, whereas most people scan the eyes and the entire face," Marron said. "We get them to do this."

Susan Meyer said this training has helped her "become better at dealing with people who are angry or have different opinions than I do."

Thus far, genetic research has revealed no medical answer to the disorder, although MRI scans show significant differences in nerve-cell connections in the brains of people with Asperger's.

In the meantime, "education and support are the interventions of choice," said Peter Gerhardt, executive director of Nassau/Suffolk Services for Autism. "With adults, it runs the gamut from how to get a job to how to avoid being a victim of sexual abuse."

Without an ability to understand subtleties in conversation and body language, it's easy to get taken advantage of, emotionally and physically.

Gerhardt was formerly at Rutgers' Douglass College, where he formed a social-skills group that Susan Meyer attended. He dubbed the group Aspies With an Attitude.

Bestowing this nickname, said Mary Meyer, "was an incredibly important way to help them form an identity, a sense of belonging and self-esteem - even though it's a strange kind of belonging."

Gerhardt said his mission is to raise awareness about his patients. "I present their stories at autism conferences, to get the message out about who they are, and that they are interesting and should be valued," he said.

Yet two vast challenges remain for adult Aspies: employment and housing.

"James," 46, lives with his widowed father and cannot hold a job despite his genius IQ. He spends his days in front of the TV and the computer, reading Old English literature and leaving the house only for martial arts classes. His father, "Dave," worries that when he dies, James will have nowhere to go and no means of support.

"He can take care of himself, and he can drive, but he doesn't have economic self-sufficiency and can't plan ahead," Dave said.

With Marron's help, James has been learning how to prepare for job interviews. Some Aspies also need her help in making sure they have a working atmosphere free of loud noises or flashing lights. "I think for our higher-functioning people, there is hope of getting a meaningful job," Marron said.

Susan Meyer longed to become a teacher, but she fears that's not possible. Instead, after several unfulfilling part-time jobs, this college graduate is looking into training as a locksmith.

Janet Carozza hopes that West Bergen can help find a housing solution for adult Aspies, who can't function well in a group-home setting because of their social deficits. "They need some kind of housing where they can be independent but be kind of supervised," she said.

Marron said West Bergen is seeking funding for a residential program where staff members would check in regularly, monitoring the budgeting and housekeeping tasks that often prove difficult for people with Asperger's.

"My long-range goal is to help every one of these Aspies have as productive a life as possible," said Mary Meyer. "So many of them could make such a wonderful contribution to society."

Abigail Leichman's e-mail address is leichman@northjersey.com.

* * *

"A Parent's Guide to Asperger Syndrome and High-Functioning Autism" by Sally Ozonoff (Guilford Press).
"Asperger Syndrome, the Universe and Everything" by Kenneth Hall (Jessica Kingsley Publishers).
"Asperger Syndrome & Your Child: A Parent's Guide" by Dr. Michael D. Powers (HarperResource).
"Eating an Artichoke: A Mother's Perspective on Asperger Syndrome" by Echo R. Fling and Tony Attwood (Jessica Kingsley).
"Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World" by Dr. Teresa Bolick (Fair Winds).
"Asperger Syndrome and Adolescence: Practical Solutions for School Success" by Brenda Smith Myles and Diane Adreon (Autism Asperger Publishing Co.).
"Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence" by Luke Jackson and Tony Attwood (Jessica Kingsley).
"Finding Ben: A Mother's Journey Through the Maze of Asperger's" by Barbara LaSalle (McGraw-Hill).

- Abigail Leichman

Boy's death puts spotlight on restraints

Monday, May 12, 2003, By LINDY WASHBURN STAFF WRITER

DANIELLE P. RICHARDS / THE RECORD

Janice Roach with a poster of her son, Matthew Goodman, in the arm splints and hockey helmet used at times over 16 months to prevent self-injury. She is pressing for a law that would sharply restrict such restraints.

SECOND OF TWO PARTS

Part one: A child's struggle, a mother's love

When the 14-year-old arrived at the emergency room, he was nearly dead. He weighed less than 100 pounds. His pulse could barely be felt. His hands and feet were cold to the touch. He hardly breathed.

But here was the strange thing: The boy was wearing arm splints and a hockey helmet.

Matthew Goodman was autistic, and so prone to self-injury that his caregivers had used a helmet and restraints to keep him from picking at wounds on his ear and nose. They'd used them for 16 months.

Matthew had lived for five years at Bancroft NeuroHealth in Haddonfield. In the days before his arrival at the emergency room, the staff had noted his decline: his unsteady gait, increasing inability to stand by himself, and growing lethargy. They'd noted his cough, his nosebleeds, and a bloody discharge from his mouth.

But the splints and hockey helmet had stayed on, sometimes even when he slept. The staff had called Matthew's mother that morning in February 2002 to say they couldn't find Matthew's vital signs. Then they had packed an overnight bag and driven him a half-hour in the school van to Children's Hospital of Philadelphia.

He died there the next day, of pneumonia and a blood infection.

Matthew's death thrust Bancroft, once one of the nation's top institutions for severely disabled children, into a maelstrom. It provoked investigations by criminal, regulatory, and accrediting authorities. It prompted intense debate in the Legislature on the use of physical restraints on institutionalized children. It raised questions for dozens of school districts that send Bancroft their neediest special-education students - including more than 35 from Bergen and Passaic counties - at a price from $300 to almost $1,000 a day.

And it caused at least one mother, Cynthia Allen of Teaneck, to refuse to send her similarly disabled son back to the campus. [In a Sunday story, The Record described her struggles to raise her son, Nicholas Aquilino, at home.]

But most children at Bancroft can't go home. Their families can't give them 24-hour-a-day attention, or there may be other children who would be endangered by their behavior. And only a few other institutions around the country accept children whose disabilities are so profound and whose needs are so intense.

So the children come to Bancroft from 25 states and several foreign countries. They come with diagnoses of autism, pervasive developmental disorder, mental retardation, traumatic brain injury, and the syndromes that result from parental alcoholism or inherited chromosomal abnormalities. Their behavior is analyzed, treatment is implemented, and research is conducted.

More than a year after Matthew died, many questions remain about Bancroft. Some of its critics still ask whether children are safe there.

New Jersey still isn't sending its own wards, children whose care is the responsibility of the Division of Youth and Family Services, to live at Bancroft's main campus. (Those who were placed there prior to the investigation have not been removed.)

Two separate arms of the state Department of Human Services reached differing conclusions about Bancroft's role in Matthew's death.

DYFS, whose ability to protect vulnerable children has been the subject of much debate in recent months, said the care he received was cause for concern but had not contributed to his death. But the Division of Developmental Disabilities, after viewing videotapes, concluded that he had been abused and that Bancroft had failed to get emergency care when needed. This divergence of opinion prompted yet another departmental review, raising questions about how DYFS had conducted its investigation.

New Jersey health officials in June fined Bancroft $127,700 - the largest amount ever imposed on such an institution. Bancroft had violated patient rights, put patients' mental and physical health at risk, and failed to report dozens of cases of abuse or neglect, the report said. But nothing has been paid, because of appeals and postponements.

Health officials nearly forced the school into receivership earlier this year, an action that would have replaced the administration of the non-profit school with another agency. But on Jan. 3, they pronounced themselves satisfied with safety improvements made under threat of a two-week deadline.

State authorities are currently investigating complaints that some of Bancroft's professional staff did not hold professional licenses in New Jersey. Fire safety is another issue: Bancroft disputes the applicability of the Seton Hall Fire Law - requiring sprinklers in dormitories - to its campus apartments.

The Camden County Prosecutor's Office closed its investigation without filing criminal charges, having found no criminal intent in the death. But Matthew's mother, Janice Roach, says she intends to file a civil case.

The Legislature also has stalled on a law that would bar use of restraints in all but emergency situations. Graphic testimony from Matthew's mother has been countered by emotional presentations from parents who attest that such techniques saved their children's lives.

Bancroft is striving to rebuild its reputation. Its executives have defended the 120-year-old institution against regulatory charges, fought against proposed new laws limiting restraints, and opened their doors to journalists. No other institution has been subjected to such scrutiny, they say. Noting that months of investigation produced no criminal charges, they defend their care of Matthew while declining to comment on specifics.

For Matthew's mother, there is only sadness and outrage.

Women who have lost their husbands are called widows. Women who have lost children should have their own special term, so defining is the ordeal.

"It has destroyed me," Roach says in an interview at her home in Bucks County, Pa. "My life is just destroyed. It's very sad.

"And the sadder piece is that there's no accountability."

A walk through the Bancroft campus leaves no question that the children in its classrooms, apartments, and crisis unit are a challenge. Terry J. Page, a psychologist and Bancroft's executive vice president for clinical affairs, says, "We do have a reputation for being able to serve a lot of people whom nobody else wants to serve, or whom nobody else is able to serve."

They are people like Tony, the handsome blond teenager, a whiz in art class, who makes only "yeek" sounds - like a chicken - without intelligible speech. And people like Jon, 16, who has the developmental age of a toddler and stomps and shrieks with joy when a gym teacher walks in with a big plastic ball. His hands are raw from sucking, and he drools on a big rubber pacifier.

Chris, 7, spins around his classroom, unable to stop himself, while working with a speech therapist. Melissa, an 18-year-old with the mental capacity of an infant, doubles over limply in her wheelchair, exhausted after a seizure.

The classrooms are noisy and crowded. Besides the teachers and children, each student has an aide. Many kids are in wheelchairs, some with ventilators attached.

Some of the children move unpredictably: A first-grader sitting in front of his aide suddenly rears back and head-butts her so hard that her lip bleeds. Tony bolts from his classroom to the bathroom. A girl walking with her aide suddenly grabs a visitor's braid because she is obsessed with hair.

At The Lindens - Bancroft's unit for children it says are in "severe behavioral crisis," where Matt Goodman spent his final months - the accommodations are designed for safety: windows of unbreakable plastic, furniture that is easily washable and too heavy to lift, and carpet so tightly woven it can't be picked apart. Each room has a videocamera recording every minute, with infrared if necessary after dark.

One child at The Lindens, a tiny, cornrowed 6-year-old, bears dark bruises on each cheek from her own fists. An older girl sustained a concussion when she threw herself to the floor her first day there. She now wears a soft karate helmet.

In the "step-down" apartments, which offer more independence as residents progress toward off-campus group homes, one occupant's bedroom was kept stripped down because she habitually smeared her feces on the walls. But another has more typical teenage decor: photographs from the Bancroft prom at a local catering hall.

Bancroft prides itself on offering a continuum of care, from The Lindens, with a capacity for 22 children, to the step-down apartments, where 40 children live under close supervision, to group homes in nearby communities, where 75 children reside under varying degrees of supervision.

The institution offers care for a lifetime, too - from early intervention for newly diagnosed toddlers to adult group homes with opportunities for sheltered employment.

"This allows us to move the children along from more to less structured settings," says Page. "We can individualize their programs. Our vision is always on the next step." When a child in a group home regresses, he can return to The Lindens instead of checking into a psychiatric hospital, where heavy sedation and full restraints would be typical, he says.

The school promotes its success stories. One woman, now employed as a Bancroft catalog sales agent, came to The Lindens in 1997, 20 years after a car accident caused injuries that resulted in seizures, aggression, and paranoia. Suicidal when admitted, she gradually worked her way into a "supported apartment" off campus, where she receives staff assistance as needed.

John and Joan Craig of Ho-Ho-Kus, who enrolled their autistic son at Bancroft nine years ago, have been satisfied with his care. Now 22 and a group-home resident, he is communicative and has never needed restraints. "The people who work there are enormously well-intentioned," John Craig says of the caregivers. "It's almost like a vocation."

Janice Roach, who enrolled Matthew in Bancroft's residential program when he was 9, recalls how difficult it was to have him living away from home. It was "the hardest thing" she did as a parent, she says. But living with her son was impossible, too.

All that's available to understand Matt's death is his mother's version of events and three reports - two from the divisions in the Department of Human Services and one from Dr. Marita Lind, a pediatrician at the University of Medicine and Dentistry of New Jersey, who studied the records for the prosecutor. Bancroft officials will not discuss his case, except in general terms.

Matthew's medical problems were complicated. He'd been diagnosed with sleep apnea, feeding problems resulting from a cleft palate and a swallowing disorder, low body temperature, a tendency to injure himself, mental retardation, and other developmental disorders, according to Lind.

He was a short boy, with droopy brown eyes and thick brown hair. More than many autistic children, Matthew enjoyed hugging and being hugged back, Roach says. He liked going for walks. He loved playing with blocks. When he started acting up, he was easily distracted, she says.

His mother and father, who are divorced, both visited him frequently at Bancroft. Roach has two younger children, now ages 7 and 4. She understood his unique speech. He could even say, "I love you," she says.

Matthew's spiral toward death began with an infection in his leg in the spring of 2000, his mother says. He was living in an apartment at Bancroft, where another resident was a feces-smearer. Matt often had open wounds from falling, she says.

The infection progressed into a form of arthritis affecting his knee, causing his whole leg to become painfully inflamed, she says. The only treatment was intravenous antibiotics. Matt spent the summer of 2000 at Children's Hospital on an IV - tough for any 12-year-old, tougher for one who couldn't understand.

The confinement worsened Matt's habit of self-injury, Roach says. Despite restraints and sedation, he picked at his ear so much that, by the time his leg infection was cured, "he'd almost ripped his ear off."

Upon returning to Bancroft, Matthew stayed at The Lindens so that a nurse could monitor his condition.

It was here, in September 2000, that splints were first used to keep Matt from bending his arms and touching his ear, Roach says. When he picked at his fingers, they put socks on his hands, she says.

Restraints are a last resort, used for only 2 percent of Bancroft's clients, says Page. Several safeguards prevent their misuse, he explains. Two committees and the child's parents must approve any treatment plan that uses restraints, and review it regularly. "Nothing is ever done to anybody without the parents being fully on board," he says.

Roach scoffs at that notion. Her consent was coerced, she says: If she didn't sign, Matt would have been kicked out of Bancroft before she could find him another school. In any case, she began to look.

Eventually, Matt used his shoulders, instead of his hands, to rub his nose. Roach demonstrates, turning her head with a shrugging motion. He rubbed one spot on his nose into an open sore. A plastic surgeon prescribed antibiotic cream. But with Matt's history, the staff became concerned about infection.

So they went to a sporting goods store and bought him a hockey helmet.

Roach says that in his final months, Matt asked her every time she visited to "take these things off," straining toward her with his immobilized arms. "There were many days when I threw up outside," she says, "because of the torture he was being put through."

Whatever the original goal, the treatment clearly wasn't working. Without classes and classmates to distract him, Matt's self-destructive behavior worsened. More sedation was ordered, she says. Sometimes when she visited, he lay on the floor without responding. Matt's father took a photograph of him in the helmet, and it has become a poster for the anti-restraint movement.

A state investigator, viewing videotapes of Matt's final week, saw a Bancroft caregiver try to rouse Matt to take him to the bathroom. Matt couldn't stand, and appeared to be too heavy for the caregiver to handle. So she dragged him to the bathroom.

Two days later, the investigator wrote, another staff member held her foot on Matt's chest for several seconds as he lay sleeping on the mat. The investigator noted that both staffers were later terminated for abuse in an unrelated case.

As circumstances worsened, Roach continued to search with growing desperation for another school that would accept Matt, she says. Using the phone and the Internet, she finally secured a spot for Matt at a Florida rehabilitation center. She put together the necessary funding and arranged air transport for Thursday, Feb. 7.

On Sunday, Feb. 3, she visited Matt. "He's on the floor," she recalls. "He can't get up. I lay down next to him. 'Mattie, I found a place, I'm getting you out of here,' I tell him. He's angry. ... He was sick, really sick, but I didn't know it."

Two days later, she got the call from the Bancroft nurse.

Matthew arrived at the Philadelphia emergency room in critical condition.

He never woke up. He died Feb. 6, one month shy of his 15th birthday.

The year since Matthew's death "has been incredibly difficult" for Bancroft, Page says. Two reports - from the Prosecutor's Office and DYFS - absolved Bancroft of responsibility for his death. A long report of deficiencies cited by the state Health Department is being appealed, he says.

The scrutiny "has resulted in our improving some of the things we do - documentation, services," he says. "We still feel strongly that the quality of the services we provide really hasn't changed, but we just have to move beyond this unpleasantness."

There will never be an end to Roach's pain, however.

"I was always an advocate for Matt," she says, "but after his death, I continued my advocacy. If I can do anything in my power to make sure that not an inch of this happens to anyone else, then I have to do it."

In her grief, she pores over the photos of Matt as a toddler hamming it up for the camera, performing in a school program, smiling at a family party. And then she touches the sweat-stained hockey helmet.

Sometimes, she even ties the frayed arm restraints around her own arms.

Lindy Washburn's e-mail address is washburn@northjersey.com

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