SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

January 6 & 7, 2004 Double Issue Vol. 8 Nos. 5 & 6

NOTE: New Updated Yesterday Calendar of Events is now out:

CARE

* WSJ - The Tender Trap: Parents Devoted To a Disabled Child Confront Old Age

AWARENESS

* Developmental Checkups

EDUCATION

* Students Facing Arrest, Not Detention

RESEARCH

* New Picture of Rare Childhood Disorder

* General Practitioners' Knowledge On Childhood Developmental And

Behavioural Disorders

* Association of Autistic Spectrum Disorder And The MMR

Vaccine - A Systematic Review of Current Epidemiological Evidence

* Serotonin Transporter Gene And Autism: A Haplotype Analysis In An

Irish Autistic Population

PUBLIC HEALTH

* Autism Fears over MMR Unnecessary, Says Blair

CARE

The Tender Trap: Parents Devoted To a Disabled Child Confront Old Age Failing Strength May Force The Communal Care They Dreaded for So Long --- Helping Tim Through His Day

[By Clare Ansberry for The Wall Street Journal. Not available online without a paid subscription.]

Donald Tullis, 84 years old, wakes each morning in the room he shares with his youngest son, their beds only feet apart.

He ties his son's tennis shoes, helps him with his pants and suspenders, and shaves him. He makes cereal the way Tim, 49 and autistic, likes, with water rather than milk, and packs a hamburger, apple and cherry pie in a brown paper bag. At 8:30 a.m., a van arrives at the curb and honks, ready to take Tim to a training center for developmentally disabled adults, where he learns how to fold his clothes and write words on a chalkboard.

For a few hours it is quiet in their small apartment, save for news updates from the radio or TV, or traffic noises outside. While his son is away, Mr. Tullis rinses the dishes and makes their beds. When Tim returns shortly before 3 p.m., Mr. Tullis pops some popcorn for his son and gives him the day's junk mail to sort through, maintaining the routines so critical to those with autism. They share a quiet dinner in a tiny kitchen, Mr. Tullis reminding his son to use his spoon for mashed potatoes and fork for meat. Both father and son are big men, though Tim is far larger than his father, having outgrown the 44-inch-waist pants that Mr. Tullis now wears.

If Lawrence Welk is on, the two watch it together, Tim smiling and rocking in his favorite rocking chair, so worn that it's held together with a wire hanger and nails. On other nights, they listen to records of Scottish and Irish singers, or read. Mr. Tullis prefers mysteries, his son magazines, flipping through them for both the pictures and the occasional familiar word.

Mr. Tullis's wife, "the Missus" he calls her, a tiny lady named Gert, died a few years ago. Since then, Mr. Tullis has assumed total care of his son. Tim adores his father, his few sentences often about Daddy. Likewise his father, a soft-spoken man, beams when he talks of the progress his son, once declared a "mental defective," has made. A few years ago, Tim received an award and plaque for his spirit and determination from the Ross Center, where he goes each day. His father, then 81, attended his son's first award ceremony.

His biggest concern is what will happen to Tim when he dies. Although Mr. Tullis doesn't suffer from any major medical problems, he must deal with the normal course of aging. He shuffles when he walks, wears a hearing aid and has arthritis, which swells his hands and causes pain in his back. "Eighty-four is getting up there," says Mr. Tullis. "The hard part is that it's going to be harder on him than me."

After a lifetime of caring for their developmentally disabled children, a generation of parents are reaching the same painful crossroads, realizing that they can't do this much longer. During the 1950s and 1960s, these pioneering mothers and fathers were among the first to shun institutional care, insisting on a place for their children in society rather than on its fringes. They were a major force behind laws requiring schools to allow disabled children into mainstream classrooms or to set up special programs for them.

In raising their children at home, these parents had little support from outside organizations, leaving them largely on their own to be parent, nurse and teacher for children with then-baffling conditions. They saved the government hundreds of millions of dollars in expensive care. They also set the standard that subsequent generations of parents have embraced. Today, about 76% of the 4.3 million people with developmental disabilities live at home, a quarter of them cared for by a family member who is at least 60 years old. Most of the rest live in supervised settings or on their own.

That dedication enriched lives and created a symbiosis between parent and child that strengthened over time, but that time likewise makes untenable. Now in their 60s, 70s and 80s, some with weak hearts or limbs and others coming off bypass surgeries or chemotherapy, these aging parents are realizing that carrying a disabled adult child down steps is dangerous. Tending to breathing tubes throughout the night is exhausting. These parents' lifelong concern with their child's mortality is coupled with a growing awareness of their own.

Yet for the most part, these 670,000 older parents -- those 60 years plus -- continue because they are afraid not to. Relinquishing care of a fragile child prone to violent seizures or terror of the unfamiliar is difficult even as it becomes physically harder to provide. And in spite of the progress of the past 40 years, there are still limited options for the disabled once they pass through mandated education programs, which generally stop when they reach the age of 21.

Nationwide, 80,000 families are on waiting lists for government-funded residential services such as in-home help; some have been waiting for a decade. The figure doesn't include untold others -- by some estimates 40% of caregivers -- who haven't asked for service because they don't know it's available. In some cases, bad past experiences keep families from reaching out for help. Years ago, Tim spent three months in a state mental-health institution because he was eating uncontrollably; he came home with unexplained sores and bruises. He apparently had been bullied by others there who ordered the then-26-year-old man to tie their shoes.

The tandem needs of an aging parent caring for an aging disabled child are beginning to draw attention. The Administration on Aging of the U.S. Department of Health and Human Services and The Arc, a nonprofit organization for the developmentally disabled based in Silver Spring, Md., are in the early stages of developing a program to give help and counselling for older caregivers. In the meantime, these parents continue dressing, bathing and feeding their children, concerned more about their offspring's welfare than their own needs.

"There are a lot of quiet heroes and heroines out there," says Diane Len, of Family Links, a nonprofit agency based in Pittsburgh that coordinates government-funded services for the Tullises and others like them.

Their paths cross over coffee in the cafeteria of the Ross Center, which works with their adult children, about 40 in all, who are severely developmentally disabled. Martha Misson, a widow and 79-year-old stepmother, had triple bypass surgery in 2000 and cares for her 44-year-old stepdaughter, who has seizures so severe she must wear a motorcycle helmet at all times. Frank and Susie Simons, both in their 60s, must spoon-feed soft foods to their 36-year-old son. The O'Sheas, Robert and Catherine, who are in their late 60s, installed a lift above their quadriplegic son's bed because Mr. O'Shea has a weak heart and can no longer lift him. Frank Hricak's wife, Alice, 78, dresses and bathes their 49-year-old daughter, who suffers from an undiagnosed mental disability. Mia Ramaeckers waits until her 72-year-old husband, Martin, comes home at 9 p.m. from a part-time job cleaning offices to take their 37-year-old daughter, her body curved like an S, up to bed. "It is easier with both of us lifting her up," says Mr. Ramaeckers. "She's not getting bigger. We're just getting older."

In many ways, these lives reflect the great successes of technology and medicine. Both parent and child are living longer than previous generations. A child with mental retardation today has a life expectancy of 66 years, compared with 19 years in the 1930s. In the past, a child who could not swallow or was prone to seizures would have been raised in an institution. With portable breathing machines and drugs to help reduce seizures, they can live at home.

Such is the case of Mary Lou Ramaeckers. Tiny Mary Lou, whose toothy grin fills half of her delicate face, spends much her time at home lying on a mat in the family room of their two-story brick home, where she watches "Wheel of Fortune," a blanket tucked around her, a pillow under her head. Windmills from the Ramaeckerses' native Holland line the walls.

Doctors have never been able to identify her disability. When she was about three years old, she began walking ducklike on her toes. Doctors operated, pulling her muscles down to help her walk flat-footed, and thought she might have cerebral palsy. They later ruled that out. When she began shaking uncontrollably, they said she had a rare neurological syndrome. They later concluded she had an undetermined metabolic disorder. When her spine began to curve from scoliosis, they said it made no sense to operate. "They thought it wasn't necessary because she wouldn't live long," says Mrs. Ramaeckers. "She was going to be a teenager and that was it."

Mary Lou's body grew twisted from the untreated scoliosis, and her muscles deteriorated. She weighs about 75 pounds, though it's hard to tell how tall she is because her body won't straighten out. She can't walk, talk, sit up on her own, swallow or eat solid food. A dozen years ago, doctors suggested a nursing home. Her parents said no.

"Look at her," says Mrs. Ramaeckers, nodding to Mary Lou. "A girl who can't talk, who can't push a button for help. What are they going to do with her? She would just lie there. You put her in the best nursing home you want, even if you have the money, and she is not going to be taken care of like she is at home."

It's not just physical care they provide. Mrs. Ramaeckers dresses Mary Lou in color-coordinated outfits, often in her daughter's favorite purple, and styles her hair when they go out to dinner and to the movies. Wanting her daughter to be well-mannered, Mrs. Ramaeckers tells her to smile to convey thanks, sensing her wide grin warms and disarms those who might be uncomfortable seeing her. "Give them a smile," she coaxes. "It's what you can do."

Her parents alone can sense almost imperceptible messages from their daughter. Mary Lou glances in a certain direction to tell her parents when she is hungry, has to use the bathroom, or wants the TV station changed. When Mary Lou has a painful muscle spasm, her mother says her eyes go blank. "I tell the doctors, `Her eyes go, she leaves me,' " she says. "They don't know what I mean."

They detect the slight gurgling sound amid conversation and laughter, and take turns suctioning saliva from the tube that acts as Mary Lou's trachea so she won't choke. The sound wakes them up several times each night.

"It's just like having a new baby. You hear them," explains Mrs. Ramaeckers -- only she is 70 years old, not a new mother. "You do slow down, but you manage," she says.

Mr. Ramaeckers dotes on Mary Lou, slipping her a dollar bill when she goes on a field trip with others at the Ross Center to the Dollar Store, and teasing her gently to make her laugh. "You gain another ounce and I'm through with you," says the slight Mr. Ramaeckers in a mock threat, as he carries his daughter up 16 steps to her bedroom. It is her favorite room in the house, with paintings of hot-air balloons and peacocks on the wall and blue Smurfs resting on her bed. She seems to like it better when her father carries her, giving him a smile and making a noise when her mother does. Mrs. Ramaeckers says she hugs Mary Lou tightly because she is afraid of dropping her.

"We are lucky," says Mr. Ramaeckers. But he worries about the future. "We've got another 10 years. Then what? Who will take care of her?"

They haven't asked their other four children to do so. "They probably would, but it's not fair," says Mrs. Ramaeckers. "They have their own family, their own life. You don't want to put the burden on them."

Few would criticize this generation of parents for choosing a selfless yet ultimately unsustainable path. Many might say that the intangible benefit of being at home and surrounded by comforting smells and sounds, family and friends, is itself good medicine. Still, those who work in the field of developmental disability gently encourage parents to make plans for their child for when they are gone, if only to ease the transition for both. Too often, they note, an older parent dies and a middle-aged child with the functioning level of a 3-year-old is left overwhelmed dealing with the loss of both parent and home.

"With this population, you have to do some planning. There's too much trauma in a new setting," says Prof. Tamar Heller, who heads the Disability and Human Development Department of the University of Illinois at Chicago.

Especially for a person like Tim Tullis.

It's difficult, all these years later, to pinpoint just when the Tullises first realized something was wrong with Tim, the youngest of their four children, who was born in 1954. Mr. Tullis says he was a beautiful baby with deep dimples. Tim walked and seemed fine until he was about 3, when his parents noticed he wouldn't talk. They sent him to school but he was dismissed after two months. At age 7, Tim was declared uneducable and mentally retarded.

Mr. Tullis, who grew up on a cattle ranch in Nevada, and Mrs. Tullis, from a small town in West Virginia, were left largely on their own to deal with the bewildering condition of autism. Even today the disorder, marked by hypersensitivity, obsessive behavior and an inability to relate to others, isn't fully understood.

Schools weren't required then to accommodate children with developmental disabilities. Still, Mrs. Tullis remained hopeful, having Tim tested every year to see if he could attend school. Each year, he was refused, and his mother brought him back home to their yellow clapboard home on Blossom Way, and gave him books and pencils and paper. When Tim was in his early 20s, his mother got so frustrated and angry that she went to court and persuaded the judge that Tim needed a treatment program. The judge ruled that the county had to admit him into one.

By then, it seemed as if it was too late. Tim had never been in group settings before. He was kicked out of the program for being disruptive. "At present there is no place for Tim except to remain in the care of his parents," one psychiatrist concluded. "Community resources available to Tim are virtually non-existent."

Tim's parents did what they could on their own to fill his life. They gave him books and magazines. Mr. Tullis says he never made a lot of money, maybe $6 an hour at his peak, driving equipment for a construction company. But every summer, they took a long car trip with Tim, eventually seeing nearly all 50 states, staying in roadside motels until their money ran out and taking pictures until the camera got lost. They visited Yellowstone's hot springs, Hell's Half Acre in Wyoming and Mount St. Helens months after it erupted.

Several years ago, Mrs. Tullis was diagnosed with Alzheimer's and began acting strangely, wearing socks in the bathtub and forgetting how to sign her name. She didn't recognize Tim and wondered who this big person was. Taking care of both his wife and son was difficult, but Mr. Tullis managed until one afternoon, when his wife fell off the back porch and broke her leg.

From the hospital, doctors transferred her directly into a nearby nursing home. Mr. Tullis would get Tim ready for school, spend the day with Mrs. Tullis, then return in time to greet Tim from school and make his popcorn. His father never took Tim to visit his mother at either the hospital or nursing home, for fear he wouldn't leave. She died about five years ago. For a long time after, at unexpected moments, Tim would blurt out, "Mommy in the hospital." When he and his father got ready for weekend drives, Tim would say, "Wait for Mommy."

Their apartment misses touches she might have lent. Plastic supermarket bags dangle from lamps. Two umbrellas lean against each other in a bookless bookshelf where 80 years' worth of photographs are stuffed in envelopes. Mr. Tullis washes his laundry in the bathtub because there is no washing-machine hookup in his apartment. This past Christmas, the artificial tree stayed in the cellar.

Mr. Tullis takes Tim on outings in the family's Dodge Caravan. On weekends, they pick a direction and head out to the rolling Pennsylvania countryside for the day. Tim sits in the back seat, his hands folded across his expansive stomach. Little is said. If Tim sees a barn, he says, "Mail pouch, big barn," remembering the chewing-tobacco advertisements that are often painted on barns. They stop at Arby's or Wendy's and eat lunch in the van on TV trays to avoid the crowds. On Christmas day, the other Tullis children visit their apartment, but one family at a time so as not to overwhelm Tim.

His youngest daughter, Linda Biegenwald, says her father has never asked his children to take care of Tim when he's gone, and it's not a comfortable subject for any of them to broach. "You don't like to speak about parents dying," says Mrs. Biegenwald, who is 50 and has two daughters living at home, both of whom suffer from mental disorders. "I don't know if I could do it." She hopes, along with her siblings, that Tim will be able to live in a supervised residential program. "No matter where he is, we'll be as active as possible in making sure Timmy is taken care of."

For now, it's up to his father. "His dad takes very special care of Tim," says Sister Jeanne, Tim's counselor at the Ross Center.

The Ross Center tries to help where it can, but it's under budget pressures because of federal and state cutbacks in funding. Staff members do more than is required. Sister Jeanne patches holes in Tim's pants, knowing an aberration in the form of a small rip can unnerve someone with autism. She found a new apartment for the Tullises when the old one had mold growing on the walls.

Sister Jeanne, who is also a member of the School Sisters of Notre Dame order, works patiently with Tim, trying to get him comfortable to new people and experiences. She made six trips with him to an office building to have his photo identification picture taken before he would get out of the car, go inside and have the picture snapped. Weeks in advance of each new outing, she compiles construction-paper booklets to review with him. There's "Let's Go to the Bookmobile" and "Tim's Physician" and "Tim Buys a Plant."

The efforts have paid off. When Tim first started coming to the Ross Center, he hid in the closet and could tolerate only 15 minutes of being at the center before he had to be taken home. Now he stays for the full five hours. He demonstrates a fascination with words and likes to type groups of nouns thematically with no space: FRITOLAYBRACHS. SPIROAGNEW. Once described as aggressive, he gets up in the classroom to offer his seat to someone who doesn't have one. In stores, he keeps his hands behind his back so as not to disturb anything. This past Christmas at a staff member's house, he watched a train set, hummed softly to himself and ate stir-fried chicken for the first time.

In a recent breakthrough, Tim allowed Sister Jeanne to comb his hair, something only his father had done before.

The big challenge now is to prepare Tim to spend a night away from home -- the first step to readying him for life without his father. Mr. Tullis is supportive of these preparations. "I never thought about it before. He was just here and that was that," he says. "Now we have to make provisions for him to go on his own . . . Pretty soon, you know, I won't be around for him to come home to."

On a recent afternoon, Marianne Badaczewski, who provides care for disabled adults to give their caregivers a rest, welcomed Tim into her home. Well-coached by Sister Jeanne, she had popcorn waiting on the table for him. One of her six children sat with Tim and drew pictures with him. He ate his dinner quietly with the family, but was ready to get home when the sun set. Sometimes in his visits he is anxious and says, "Go see Daddy," she says, but seems to be getting more comfortable every time.

In a few weeks, Sister Jeanne will put together a small suitcase with washcloths and a toothbrush. That way, Tim can wash his face and brush his teeth after dinner at Mrs. Badaczewski's house, all things that he has done only at home with his father's help. And for when Tim is ready, an unused day bed in her son's room is made up and waiting for him.

(Copyright (c) 2004, Dow Jones & Company, Inc.)

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AWARENESS

Developmental Checkups

They’re good, they’re cheap and they’re almost never done. What is wrong with this picture?

An important part of ensuring that every child enters school ready to learn is identifying problems early, and then addressing them before they become overwhelming. Our country’s track record of finding and helping young children with physical conditions such as leukemia, juvenile diabetes and asthma is improving. But all too often, mental health, learning and behavioral problems fester unattended, missing the critical womb-to-five window of opportunity when a child’s brain, body and behavior change at the most astonishing rate.

Late identification forces states, schools and taxpayers to foot the bill for expensive special education fixes to problems that could have been cured, or at least treated more effectively and more cheaply, during the preschool years. Consider these facts: Five to eight percent of children under age five years have some sort of disability or chronic condition, such as autism, cerebral palsy, diabetes, epilepsy, mental retardation or orthopedic problems. The American Academy of Pediatrics cites much higher figures, saying that 12 to 16 percent of children have developmental or behavioral disorders.

The number of children with autism, in which cases early intervention is essential, is soaring. A 2003 editorial in the Journal of the American Medical Association estimates that, nationwide, one in every 170 children is affected by an autism spectrum disorder. The number of people with autism in California’s Developmental Services System doubled between 1998 and 2002.

Early detection and intervention work. As the National Academy of Sciences said in From Neurons to Neighborhoods, "Compensating for missed opportunities, such as the failure to detect early difficulties or the lack of environments rich in language, often requires extensive intervention, if not heroic efforts, later in life." Although economists quibble about the exact numbers, study after study shows that intense preschool services produce huge academic, social and economic benefits—including savings to society of $30,000 to $100,000 per child. And dollars saved are surely not the only measure of value, especially to the one-in-25 households with a disabled preschooler.

White children with serious disabilities are often identified at much younger ages than ethnic—or language—minority children. A study of Pennsylvania children covered by Medicaid found that white children were diagnosed with autism more than a year earlier than their African-American or Latino counterparts: age 6.3 years for white children, 7.9 years for African-American children and 7.4 years for Latino children.

Many people think the problem is that we don’t know how to spot problems in young children. But they are wrong. Good screening instruments exist—tools that consistently detect children with problems and identify children without problems.

A 2001 American Academy of Pediatrics policy statement identifies high-quality parental-report tools that take only a few minutes to

administer: the 10-question PEDS (Parents’ Evaluation of Developmental Status), the Ages and Stages Questionnaires and the Child Development Inventories.

These recommendations confirm what most of us already know: Parents are the best experts on their children. These tools provide an effective way to capture what parents know and to share it with doctors. In fact, these simple instruments identify 70 to 80 percent of children with problems. Repeated or "periodic" screenings increase these percentages. That’s the "good" news.

The bad news is that only 15 percent of pediatricians always use a screening tool. Seven out of 10 rely on their clinical judgments—even though this method identifies less than 30 percent of children with mental retardation, learning disabilities, language impairments and other developmental disabilities, and less than 50 percent of children with serious emotional and behavioral disturbances. Physicians who simply "eyeball" their youngest patients—as most do—miss half the problems that a two-minute screening tool would catch immediately.

If every child had a high-quality developmental check-up—and communities followed up with services—thousands of children would have better lives. In the state of California, at least 124,000 children under age five years have or will develop a disability or mental or behavioral disorder, assuming a conservative five percent disability rate. If every child got a good screening, at least 75 percent (93,000 kids) could get needed help early, when it could do the most good. With repeat screenings, this number would go up even more. However, as things stand, less than half (56,000 children) will be identified as needing help; far fewer get it.

Our country’s pathetic record of identifying young children who need help could be quickly turned around if policymakers and communities took four practical steps:

1. Insist that pediatricians check every preschool child with a good screening instrument—not just once, but regularly. The best screening tools include the parent-based PEDS, the Ages and Stages Questionnaires and the Child Development Inventories. Parents need to know that they have the right to expect doctors to use a good tool and not just "eyeball" their child during a well-child visit. Pediatricians need to know that these tools exist, that they work, that they are inexpensive and that their receptionists can be trained to help parents fill out the forms.

2. Train parents, child care workers and others to use the parent-based screening tools, rather than depending entirely on doctors and other professionals to flag problems. These common-sense tools help parents describe concerns about their child’s learning, development and behavior in ways that can enable doctors and other professionals to zero in quickly on problems and identify effective interventions.

3. Focus more on preschool special education. It is appalling that the US Congress puts so little of our tax money where research shows it would do the most good—on in the earliest years of life. Currently, the federal per-child contribution for the approximately 700,000 children ages three to five years old in special education is less than half that for school-age children, and the gap is widening. The federal contribution for infants and toddlers ages birth to two years has dropped by more than $150 per child since 1992. This "penny wise, pound foolish" approach costs families, schools, communities and taxpayers dearly over the long haul.

4. Integrate early identification and treatment of mental health, learning and behavior problems into core educational standards. Some states and communities are already taking concrete steps to emphasize that social and emotional well-being directly affects learning; it is much more than "plays well with others." The Los Angeles County Children’s Planning Council and First 5 LA have identified the degree to which preschool children need special education and actually receive it as a core indicator of school readiness. And a new Illinois report on children’s mental health recommends that the legislature requires that the state board of education incorporate social and emotional standards into the Illinois Learning Standards.

Early identification is the essential first step to assuring that infants and preschoolers with problems get the help they need to grow and learn. Let’s get started by making it a priority to assure that every infant and preschooler gets screened—early and often—with a first-rate screening tool.

Some problems—like some disabilities—are not fixable, at least not yet. But the solution to our country’s poor record of identifying infants and preschoolers with problems is at our fingertips. We just need to do it.

Margaret Dunkle is a Senior Fellow with the Department of Health Policy at George Washington University and lives primarily in Los Angeles. The California Endowment and Annie E. Casey Foundation support her work.

Louis Vismara, MD, is a parent of four children, one of whom has autism. A retired invasive cardiologist, he currently works as a consultant with the California State Legislature and is a Commissioner on the California First 5 Commission.

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EDUCATION

Students Facing Arrest, Not Detention

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Toledo, Ohio — The 14-year-old girl arrived at school here on Oct. 17 wearing a low-cut midriff top under an unbuttoned sweater. It was a clear violation of the dress code, and school officials gave her a bowling shirt to put on. She refused. Her mother came to the school with an oversize T-shirt. She refused to wear that, too.

"It was real ugly," said the girl, whose mother did not want her to be identified.

It was a standoff. So the city police officer assigned to the school handcuffed the girl, put her in a police car and took her to the detention center at the Lucas County juvenile courthouse. She was booked on a misdemeanor charge and placed in a holding cell for several hours, until her mother, a 34-year-old vending machine technician, got off work and picked her up.

She was one of more than two dozen students in Toledo who were arrested in school in October for offenses like being loud and disruptive, cursing at school officials, shouting at classmates and violating the dress code. They had all violated the city's safe school ordinance.

In cities and suburbs around the country, schools are increasingly sending students into the juvenile justice system for the sort of adolescent misbehavior that used to be handled by school administrators. In Toledo and many other places, the juvenile detention center has become an extension of the principal's office.

School officials say they have little choice. "The goal is not to put kids out, but to maintain classrooms free of disruptions that make it impossible for teachers to teach and kids to learn," said Jane Bruss, the spokeswoman for the Toledo public schools. "Would we like more alternatives? Yes, but everything has a cost associated with it."

Others, however, say the trend has gone too far.

"We're demonizing children," said James Ray, the administrative judge for the Lucas County juvenile court, who is concerned about the rise in school-related cases. There were 1,727 such cases in Lucas County in 2002, up from 1,237 in 2000.

Fred Whitman, the court's intake officer, said that only a handful of cases — perhaps 2 percent — were for serious incidents like assaulting a teacher or taking a gun to school. The vast majority, he said, involved unruly students.

In Ohio, Virginia, Kentucky and Florida, juvenile court judges are complaining that their courtrooms are at risk of being overwhelmed by student misconduct cases that should be handled in the schools.

Although few statistics are available, anecdotal evidence suggests that such cases are on the rise.

"Everybody agreed — no matter what side of the system they're from — that they are seeing increasing numbers of kids coming to court for school-based offenses," said Andy Block, who assisted in a 2001 study of Virginia's juvenile justice system by the American Bar Association's Juvenile Defender Center. "All the professionals in the court system were very resentful of this. They felt they were being handed problems and students that the schools were better equipped to address."

According to an analysis of school arrest data by the Advancement Project, a civil rights advocacy group in Washington, there were 2,345 juvenile arrests in 2001 in public schools in Miami-Dade County, Fla., nearly three times as many as in 1999. Sixty percent, the project said, were for "simple assaults" — fights that did not involve weapons —and "miscellaneous" charges, including disorderly conduct.

Many of the court cases around the country involve special-education students whose behavior is often related to their disabilities, Mr. Block and others say.

In an elementary school in northeastern Pennsylvania, an 8-year-old boy in a special-education class was charged with disorderly conduct this fall for his behavior in a time-out room: urinating on the floor, throwing his shoes at the ceiling and telling a teacher, "Kids rule."

"Teachers and school administrators know now that they can shift these kids into juvenile court," said Marsha Levick, legal director for the Juvenile Law Center of Philadelphia, which is representing the boy and has asked that the charges be dismissed. "The culture has shifted. Juvenile court is seen as an antidote for all sorts of behavior that in the past resulted in time out or suspension."

Experts say the growing criminalization of student misbehavior can be traced to the broad zero-tolerance policies states and local districts began enacting in the mid-1990's in response to a sharp increase in the number of juveniles committing homicides with guns, and to a series of school shootings.

While the juvenile homicide rate has since fallen, and many studies have found that school violence is rare, the public perception of schools — and students — as dangerous remains. Experts say zero-tolerance policies have created an atmosphere in which relatively minor student misconduct often leads to suspensions, expulsions and arrests.

"The idea that you try to find out why somebody did something or give a person a second chance or try to solve a problem in a way that's not punitive — that's become almost quaint now," said Laurence Steinberg, a professor of psychology at Temple University and the director of the MacArthur Foundation Research Network on Adolescent Development and Juvenile Justice.

What has also changed, Dr. Steinberg said, is that principals are less able to depend on parents to enforce the discipline schools mete out. "I think in the past the threat of getting in touch with a kid's parents was often enough to get a kid to start behaving," he said. "Now, kids feel parents will fight on their behalf."

In addition, Dr. Steinberg said, schools — particularly urban schools with large numbers of poor children — have been forced to reduce or eliminate mental health services. "In the past a lot of these kids would have been referred to specialists within the school or the school district. The juvenile justice system has become the dumping ground for poor minority kids with mental health and special-education problems."

The Toledo City Council passed the safe school ordinance in 1968 in response to concerns that schools had become dangerous. The ordinance allows for the filing of misdemeanor charges against students for anything from disrupting a class to assaulting a teacher. Juvenile court officials say relatively few students were charged with violating the ordinance before 1995, when Toledo police officers were assigned to secondary schools.

In 1993, only 314 charges were filed, according to Dan Pompa, the administrator for the Lucas County juvenile court. By 1997, he said, the number had more than tripled, to 1,111.

Arrests in the past year or so include two middle school boys whose crime was turning off the lights in the girls' bathroom and an 11-year-old girl who was arrested for "hiding out in the school and not going to class," according to the police report, which also noted, "The suspect continuously does not listen in class and disrupts the learning process of other students."

The girl's mother, who declined to be named, said, "I told them if she didn't want to go to school, put her in the detention center." The police took her daughter there in handcuffs, in the back of a police car.

Of the Toledo school district's 35,000 students, 47 percent are black, 43 percent white and 7 percent Hispanic. According to Mr. Pompa's figures, minorities account for about 65 percent of the safe school violations.

These higher rates are "something we would certainly want to keep an eye on," said Eugene Sanders, Toledo's schools superintendent.

Ms. Bruss, the schools spokeswoman, said it was the Toledo district's policy that students be charged with violating the ordinance only as a last resort. In addition, she said, most of those cases involve students with long histories of offenses.

Craig Cotner, chief academic officer for the Toledo public schools, said he believed part of the problem was that schools were being called upon to educate a far wider range of students than before. Thirty years ago, he said, students who were not performing well were counseled to drop out, and they easily found jobs at auto plants and other factories.

"For students who did not fit the mold — whatever mold that may be — there were many more options," Mr. Cotner said. "In some cases, those students who found it impossible to sit for five hours in a classroom could function very well in a labor environment." Today, he said, those students, with far fewer options, remain in school, but the school district has fewer resources to handle difficult students.

With a $15 million budget deficit last year, the district laid off 10 percent of the teaching force, or 231 teachers. Class size increased. With a $16 million deficit this year, more cuts must be made, Mr. Cotner said.

In addition, he said, a significant percentage of the district's resources must be used to fulfill federal mandates like the No Child Left Behind law, with its emphasis on accountability and testing.

Judge Ray of the county juvenile court says he sympathizes with school officials. "The schools have been called upon to fix everything that hasn't been working up to this point," he said. However, he said, juvenile court is not the appropriate place to solve adolescent problems.

Judge Ray has Mr. Whitman, the court's intake officer, and other court officers handle minor nonviolent offenses, offering counseling and referrals to the proper programs.

Mr. Whitman, 50, said he believed that no young person should ever be written off. "If a kid's not doing well, I think we need to sit down and find out what we can do to help him or her out," he said.

Mr. Whitman talked at length with the 14-year-old girl who had worn the midriff top and with her mother. "She didn't come across as a major problem at all," he said. "She knew the shirt was inappropriate. She just wanted to show off a certain image at the school. Probably she just copped an attitude. I expect that from a lot of girls."

An official of the girl's school said he could not discuss her case. He referred a reporter to the principal, who did not return calls to his office.

The girl's mother, who declined to be named, said she had not objected to the decision to arrest her daughter. "She wants to push authority to the hilt," she said.

The girl said of her encounter with school officials and the police: "I don't like to get yelled at for stupid stuff. So I talk back."

Copyright 2004 The New York Times Company

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RESEARCH

New Picture of Rare Childhood Disorder

HealthDayNews - The first use of functional magnetic resonance imaging

(fMRI) to study the brain of a boy with a rare disorder called hyperlexia is described in a Georgetown University study in the new issue of Neuron.

The case study of a single child revealed the neural mechanisms that underlie hyperlexia. The findings suggest hyperlexia is the true opposite of the reading disability dyslexia.

Children with hyperplexia display some of the same characteristics as children with autism, including extreme difficulty with oral communication, social interaction and expression. Yet children with hyperplexia can have extraordinary reading ability.

It's been reported that some hyperplexic children can read at 18 months. Some start reading two years before they say their first word. Ethan, the child in the Georgetown University case study, reads six to eight years in advance of his age.

"This advanced reading ability, which would likely surprise any parent, is even more extraordinary given that many of these children begin reading before mastering spoken language, and sometimes before speaking at all," study senior author Guinevere Eden, an associate professor of pediatrics and director of Georgetown's Center for the Study of Learning, says in a prepared statement.

"Current theories of reading development posit that decoding skills are based on linguistic abilities, but our finding suggests that children like Ethan are able to map sound onto print without a solid language basis," Eden says.

* * *

General Practitioners' Knowledge On Childhood Developmental And Behavioural Disorders.

ds=14700418&dopt=Abstract

Lian WB, Ho SK, Yeo CL, Ho LY.

Department of Neonatology, Singapore General Hospital, Outram Road, Singapore 169608.

INTRODUCTION: Childhood developmental and behavioural disorders are increasingly being recognised, with high demands for earlier diagnosis and intervention.

In Singapore, referrals to the Child Development Unit, KK Women's and Children's Hospital, originate mainly from primary health care practitioners, who therefore should have adequate baseline knowledge of normal development as well as common developmental and behavioural disorders.

METHODOLOGY: A pilot study, using a questionnaire survey, was conducted, with the aim of assessing existing knowledge in childhood developmental and behavioural paediatrics amongst a cohort of general practitioners (GPs) in Singapore.

True/False questions on normal development as well as developmental disorders such as autistic spectrum disorder (ASD), attention deficit/hyperactivity disorder (ADHD) and learning disability, were structured.

These disorders were selected because of their relatively higher prevalence.

RESULTS: A total of 48 GPs were surveyed, representing 2% of non-specialists practising in the private sector.

The median total score (T-score) was 9 (range 6 to 13) of a possible 14.

Only just over a-third of the group achieved the pass rate (defined arbitrarily as 75%) for T-score, with two-thirds replying correctly to all questions on normal development.

Scores for factual ASD/ADHD questions were also not ideal, with some myths being believed as truths.

CONCLUSION: The scores reflect knowledge and educational deficits in developmental paediatric medicine amongst the study cohort.

Expected to provide holistic care and counselling, these GPs are currently insufficiently equipped with the necessary knowledge and skills to support families of special-needs children.

Education and training programmes in this aspect of paediatric medicine are clearly needed, through the organisation of CME lectures and incorporation of various developmental topics into the training curriculum.

This will enable early identification and diagnosis of childhood developmental and behavioural disorders, which will in turn allow greater optimisation of potential and functionality in these special-needs children.

PMID: 14700418 [PubMed - in process]

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Association of Autistic Spectrum Disorder And The Measles, Mumps, And Rubella Vaccine - A Systematic Review Of Current Epidemiological Evidence.

ds=14678320&dopt=Abstract

Jacobson RM.

Mayo Clinic, Rochester, MN, USA.

Wilson K, Mills E, Ross C, McGowan J & Jadad A. (2003) Archives of Pediatrics and Adolescent Medicine, 157, 628-634.

The authors conducted a systematic review of the evidence for and against the existence of an association between autistic spectrum disorder and the measles, mumps and rubella (MMR) vaccine.

Specifically, they tested four hypotheses: (1) that the rates of autistic spectrum disorder is higher in individuals who have received MMR than those who did not, (2) that an increase in autistic spectrum disorder may be occurring as a result of MMR, (3) that the development of autistic spectrum disorder is temporally associated with receiving the MMR, and (4) that a new variant form of autistic spectrum disorder may be associated with the MMR vaccine.

The authors sought to identify all controlled epidemiological articles examining for an association between autistic spectrum disorder and the MMR vaccine.

They extracted data from the articles on the characteristics and objectives of the study as well as evidence of an association.

Twelve articles met the inclusion criteria.

One study found no difference in the rates of autistic spectrum disorder and the MMR vaccine in children who were vaccinated and those who were not.

Six studies examined for evidence of an increase in autistic spectrum disorder associated with an increase in the MMR vaccine coverage; none of the six showed evidence of an association.

Four studies examined if a variant form of autistic spectrum disorder was associated with the MMR vaccine; none of the four showed evidence of an association.

Eight studies attempted to determine if there was a temporal association between developing autistic spectrum disorder and receiving the MMR vaccine.

Of these, one study identified an increase in parental concern in the 6-month period following vaccination with MMR in one of its analyses.

The results of all other studies showed no association between autistic spectrum disorder and the MMR vaccine.

The authors concluded that the current literature does not suggest an association between autistic spectrum disorder and the MMR vaccine.

The authors did note that the studies were not large enough even in aggregate to rule out a link between a rare variant form of autistic spectrum disorder and the MMR vaccine; they held, however, that given the real risks of not vaccinating and that the risks and existence of variant autistic spectrum disorder remain theoretical, current policies should continue to advocate the use of the MMR vaccine.

PMID: 14678320 [PubMed - in process]

* * *

Serotonin Transporter Gene And Autism: A Haplotype Analysis In An Irish Autistic Population.

ds=14708029&dopt=Abstract

Conroy J, Meally E, Kearney G, Fitzgerald M, Gill M, Gallagher L. Department of Genetics, Smurfit Institute, Trinity College, Dublin, Ireland.

The role of the serotonin transporter (5-HTT) in the development of neuropsychiatric disorders has been widely investigated.

Two polymorphisms, an insertion/deletion in the promoter region and a 12 repeat allele in a variable nucleotide tandem repeat (VNTR) in intron 2, drive higher expression of the 5-HTT gene.

Four studies have shown nominally significant excess transmission of alleles of the 5-HTT gene in autism, while three studies have reported no excess transmission.

This present study investigates the role of 5-HTT in the genetically homogenous Irish population.

In all, 84 families were genotyped for five polymorphisms (three SNPs, a VNTR and an in/del).

The analysis of allele transmissions using the transmission disequilibrium test (TDT) was undertaken and indicated preferential transmission of the short promoter allele (TDT P-value=0.0334).

Linkage disequilibrium between markers was calculated and haplotypes were assessed for excess transmission and odds ratios (ORs) to affected children.

A number of haplotypes, especially those involving and surrounding SNP10, showed evidence of association.

The ORs ranged from 1.2 to 2.4.

The most significant haplotype associated with transmission to affected probands was the SNP10-VNTR-SNP18 haplotype (chi(2)=7.3023, P=0.0069, odds ratio=1.8).

This haplotype included the 12 repeat allele of the VNTR, which is associated with increased expression and may play a subtle role in the early development of the brain in affected probands.Molecular Psychiatry advance online publication, 6 January 2004; doi:10.1038/sj.mp.4001459

PMID: 14708029 [PubMed - as supplied by publisher]

* * *

PUBLIC HEALTH

Autism Fears over MMR Unnecessary, Says Blair

Public fears over the link between the MMR vaccine and autism had been raised "quite unnecessarily", British Prime Minister Tony Blair said today.

Evidence of the safety of the vaccination was "very clear", he added.

The triple measles, mumps and rubella jab has been clouded in controversy ever since it was linked to the syndrome by research during the 1990s.

Dr Andrew Wakefield’s work, carried out while he was at London’s Royal Free Medical School, first raised suspicions about a possible relationship between the MMR jab and autism and bowel disease.

But subsequent research around the world has failed to prove a link and the majority of doctors back the safety of the triple vaccine.

At question time, Mr Blair told MPs: "You’re absolutely right to say that the controversy over MMR is a very good example of where people’s fears were raised quite unnecessarily since the evidence is very clear."

He went on: "You will know that Education Secretary Charles Clarke has certain proposals about the changes in research funding and I would simply refer you to those.

"But I agree with you that it is important that the funding goes on the basis of scientific and good research."

There are currently two reviews under way into parts of what is known as the "dual support" funding system for university research.

Labour’s Nigel Beard (Bexleyheath and Crayford) called on universities and research laboratories to ensure that where work related to public health and welfare, it was properly reviewed by peers working in the same field.

He asked the Prime Minister: "Would you agree that had that been done to the work of Dr Wakefield – that purported to link the MMR vaccine to autism but was never corroborated – that a great deal of parental anxiety and a dangerous fall in children’s’ vaccination could have been avoided." _________________________________________________________________

Edward Decelie Debbie Hosseini Richard Miles Ron Sleith Kay Stammers

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