These are some of the faces of autism, whose stories are being told this week. Each struggles with a disorder that, for now, is shrouded in mystery.Posted on 09/24/2006 10:45:49 PM PDT by Coleus
| These are some of the faces of autism, whose stories are being told this week. Each struggles with a disorder that, for now, is shrouded in mystery. |
Mention autism and everyone has a story. A best friend's 2½-year-old was just diagnosed; the boy's parents and grandparents are devastated. A neighbor's daughter has been going to a special school since she was 3, eight years already. A family at church quietly stopped coming; it turns out they have a son with autism and it was just too hard for him to sit still. The numbers are overwhelming: Autism is diagnosed more frequently now than childhood cancer, diabetes and AIDS -- combined. It has become the second most common developmental disorder among children, after mental retardation, affecting one of every 166 born this year. That's 700 new cases each year in New Jersey and 24,000 in the United States. In Brick Township, the rate was found to be even higher -- 1 in 149.
No one knows why the numbers are going up, or even how fast they're increasing. No one knows what causes it. All they know is there's no cure.
 In Autism's Grip
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Every single one of those numbers represents heartache: a soul stolen, a dream destroyed, a family upended. "We had her," Frank Lento says of the curly-haired toddler who wrapped her arms around his legs every time he came home. "And we lost her." Darling Kate babbled, and then she didn't. She loved to run and get the ball, then she didn't know "ball" from "bottle." She turned at the sound of her name, then she just sat there, lost. "Her sweet little body was there, but it was as if someone had taken away her soul," says her mother, Diane. If one in 166 toddlers were being abducted, it would be a national emergency. Instead, it is a mostly private sorrow.
But autism touches everyone.
Autism pushes up school taxes. It drains millions from the state budget. A dollar from every traffic ticket in New Jersey goes to fund autism research. Today and for the next five days, The Record will explore the scope of autism in northern New Jersey. The series will look into research about causes and prevention. It will explain the potential of behavior intervention. It will show that in a state that spends, by one estimate, more than $1 billion on services for children and adults with autism, there is a desperate need for more. Autism takes away so much of what it means to be a social human being -- that ineffable kinship of shared smiles, sympathetic glances, gestures more powerful than words. A child with autism, very often, will not speak. He may shriek at the sound of rain on the window, yet stare for hours at a dust mote in the sunlight. She may avoid a parent's gaze, resist a loving touch.
Each is affected differently. Some will actually talk too much -- about a single, obsessed-over topic, like dinosaurs. They may not understand the nuances of language or the appropriate distance for a conversation. They may eat nothing but white-colored foods and sleep erratically. Autism forces accomplished parents to rethink their goals. Success as a parent is no longer about the kid making the baseball team or getting into a good college. Sometimes it's about uttering a single syllable, sleeping through the night, getting a haircut without a meltdown. Autism is a consuming, lifelong responsibility for which no parent volunteers. "Every parent wants to quit the club," says Robin Sims, a Bloomfield resident whose 23-year-old daughter has autism. "You get to a certain point and you realize you're not quitting the club."
Why so many?
Forty years ago, it was hard to find a person with autism, says Dr. Arnold Gold, a longtime Englewood pediatric neurologist and professor at Columbia University Medical School. Not anymore. The number of children in New Jersey classified with autism by the state Department of Education has multiplied more than 30-fold in the last 14 years: from 234 in 1991 to 7,400 last year. Each school district in northern New Jersey provides special education to at least one student with autism. Allendale has 14, Paterson 103. The rising numbers may be evidence of an epidemic. Or they may result from better public awareness and a broader definition -- one that includes severely disabled children once labeled mentally retarded, as well as high-functioning "little professors" once dismissed as quirky.
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By the numbers 7,396 students in New Jersey are classified with autism. In New Jersey, a $1 surcharge on all moving-violation tickets -- $3.5 million to $4 million annually -- goes to the Governor's Council on Autism to fund research.
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A soon-to-be-published study will establish New Jersey's statewide rate of autism and shed light on whether the Brick Township cases were a cluster, as parents there feared, or part of an alarming trend. Autism's image has been formed in equal parts of "Rain Man," the film in which Dustin Hoffman plays a card-counting, telephone-book-memorizing autistic savant, and of Geraldo Rivera's 1972 Willowbrook State School investigation, which showed patients rocking in their corners and banging their heads against the walls. But those are the extremes. They don't convey the breadth of patients with an autism spectrum disorder:
Early intervention
Autism disorders are characterized by three key problems: a broken communication system that often affects both listening and speaking, limited ability to form social relationships, and highly focused, repetitive behavior. A toddler with autism may watch the wheels spin on a toy truck, or stare at it from odd angles, rather than push-drive it along the floor, says Dr. Joseph Holahan, chief of developmental pediatrics at St. Joseph's Children's Hospital in Paterson. The child won't point to show off something interesting. These traits appear in varying combinations and degrees in every individual with autism. The good news is that many children who are caught early reverse their inward spiral. They emerge from their isolation and withdrawal to speak and learn and take pleasure in the company of others. A few may completely "lose the diagnosis" and integrate into mainstream society. At the Therapeutic Nursery of the Jewish Community Center on the Palisades, one graduate of the preschool program eventually went on to medical school.
Most will need help for the rest of their lives -- a job coach, a group home, a safe place to spend the day -- but early intervention can help each child learn to live a fuller, more productive life. "We know we can make the greatest change in the youngest kids," says Dawn B. Townsend, executive director of the Institute for Educational Achievement. Rebecca Landa, director of one of the nation's leading research and treatment centers for autism and other developmental disorders, calls early intervention the "doorway to hope." She has followed more than 300 high-risk baby siblings of autistic children in a study to find ways to diagnose children earlier. "My research shows that autism may be diagnosable by age 2, and in many cases, as early as 14 months," says Landa, director of the Center for Autism and Related Disorders at Baltimore's Kennedy Krieger Institute. "Sometimes parents are afraid to get their child screened," she adds. "They don't want to hear that their baby has a developmental delay or even autism. But screening is the best thing you can do for your child."
In early childhood, millions of neurons in the brain typically migrate from the center to the periphery, and create connections. Autism interferes with this process. The connections in the parts of the brain that control language learning, social intelligence, mental flexibility and other behaviors fail to develop normal "wiring." Early intervention takes advantage of the fact that the younger the brain, the more flexible or "plastic" it is. With guided, repetitive stimulation and rewards, new mental pathways can be created to compensate for some of the abnormalities. Behavior intervention provokes those new connections to form. The most commonly used system is based on discrete tasks and rewards. Derived from the work of B.F. Skinner, it is called Applied Behavior Analysis. "This is a science-based intervention, individualized for kids," says John Brown, the REED Academy's director. "There are a lot of sham methodologies preying on parents who are desperate. Applied Behavior Analysis has the best database by far."
Jordan Waxman of Rockleigh has watched his 4-year-old son, Jonah, undergo this therapy nearly round-the-clock since he was 19 months old. It's a lot like wiring a computer, he says: "You have the software and you have the hardware, and you have to connect the wires and write the lines of code. That's effectively what they are doing: This is how you eat with a fork, this is how you blow your nose, this is how you put your lunchbox away." Jonah has blossomed, his father says. He's learned to swim, and he happily takes the bus to school each day -- enough to make his parents think they "have a shot" at giving him a meaningful, productive life.
No room at schools
New Jersey has become a hotbed of this approach, with the world-renowned Alpine Learning Group, the Princeton Child Development Institute, the Institute for Educational Achievement, the Educational Partnership for Instructing Children (EPIC) School and the REED Academy. One family moved from Utah with three autistic children for the services available here. But there just isn't enough room for all the children who need help. Waiting lists at the private schools are impossibly long -- about 300 at Alpine, for 28 places. The worst part of the school director's job is telling a family there's no room. "Every one of them deserves to be here," says Townsend, of the Institute for Educational Achievement. "It is really hard and sad."
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Resources Parents concerned about possible autism or other aspects of a child's development may consult:
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Most schools have just 20 to 30 students between the ages of 3 and 21. Openings occur only when a child "graduates" to public school or ages out. Parents liken acceptance to winning the lottery. Shane's mother still celebrates the monthly anniversary of her son's enrollment by providing breakfast for the entire staff -- 19 so far.
Other parents aren't so lucky. When Kate Lento was diagnosed, her parents put her on the waiting list at Alpine. She started at 189. Six months later, she'd moved up to 187. So Frank and Diane Lento, both stockbrokers, decided to join with other parents in the same situation and start a school. That was August 1995. The Institute for Educational Achievement opened its doors just 13 months later. "It was like God was watching over us," says Frank Lento. The United Church of Christ his family attended in River Edge agreed to rent space for a nominal fee. The Princeton institute, one of the first schools to use Applied Behavior Analysis with autistic children, asked if IEA would be willing to replicate its program.
Five years later, IEA opened its own $3 million facility in New Milford. Now IEA families and staff are discussing potential programs for adults, as the young children of 1996 get closer to aging out at 21. Other private schools have a similar story: Desperate parents surmount mountains of paperwork, raise millions of dollars and establish their own schools. "Every program that has started since Alpine was started by parents who couldn't get their kids in here," says Bridget Taylor, a renowned behavior therapist who is a co-founder and executive director at Alpine, which opened its doors in Paramus in 1989.
REED Academy, now renting space in Garfield, plans to build its own facility in Oakland. Garden Academy, another Princeton replica, opened this month in Essex County. The one-on-one ratio of instructors to students and the intensity of the work make such education extremely expensive. Public schools foot most of the bill. Federal law requires school districts to provide an appropriate education to every child, regardless of disability. The child's home district pays tuition of $50,000 to $80,000 a year for these programs -- plus busing. Even that doesn't cover a school's full cost, however. The balance is made up by fund raising. But the longstanding practice of sending special-needs students out of district may be giving way. Encouraged by $15 million in new state grants, public schools are working with parents to create programs that allow children with autism to attend the same school as their non-autistic siblings. Budget pressures also drive the trend: Reducing costly out-of-district placements is a quick way to cut expenses.
In Teaneck, Ridgewood, Leonia, Bergenfield, Ringwood, Prospect Park and Hawthorne, school districts are trying to draw families back. A new program at Lincoln Elementary School in Bergenfield, for example, promises to save taxpayers in three communities $300,000 in its first year. The best cost-cutting strategy, however, may be to help these children when they are even younger. Ben Bakter became a participant in Rebecca Landa's Baltimore study of baby siblings shortly after his older brother, Alex, was diagnosed with autism. He was just 14 months old when Landa saw signs that he, too, was likely to develop autism. Ben's mother, Christine Bakter, immediately tapped into the state Health Department's early intervention program for children with developmental delays. It helps to coordinate care and pays for some therapy, based on a sliding scale. "He was transformed before our eyes," the Hamilton Township mother says. This month, 5-year-old Ben joined an integrated kindergarten, where both typical and special-education children are enrolled.
Alex, on the other hand, did not receive such early intervention because he wasn't diagnosed until age 3½. He has had smaller gains. Ben's therapy cost taxpayers an estimated $8,000 a year for two years, Christine Bakter estimates. Alex received 35 hours of therapy a week at a special preschool, at a cost of about $35,000 a year, and continues in a special school.
A complex puzzle
When Dr. Leo Kanner first identified "early infantile autism," more than 60 years ago, he blamed parents -- particularly mothers -- for depriving their children of love and affection. The children, he said "were kept neatly in a refrigerator which didn't defrost." They were autistic because they withdrew to seek comfort in solitude. Science has discredited this theory. Autism is now understood as a disorder of the brain's development, fueled in part by genetics and in part by the environment. But researchers still can't say what causes autism -- and how it could be prevented. Understanding autism "is like trying to do one of those really hard jigsaw puzzles," says one of the state's top researchers, Linda Brzustowicz of Rutgers University. "Anytime you get a few more pieces in place, it makes others easier to fit in." Scientists are researching the genes that may explain why autism runs in families, and the factors -- such as chemicals in the environment -- that may trigger the disorder. They're looking into the possible role of the immune system. They're mapping the brain and its role in the myriad tasks that make us part of the human family.
Autism is in the news almost daily. A just-published study found that men over 40 were more likely to father a child with autism. Last month, a New Jersey assemblyman demanded that the state Health Department study the possible role of prenatal ultrasounds. Other researchers have examined mercury preservatives in childhood vaccines as a threat. Experts concluded that they were not, though some remain unconvinced. It will be years before the puzzle is solved. But the outlook for children with autism and their families has improved with better funding of research and educational programs. A recent conference on autism research and public policy concluded: "Autism and hope are no longer mutually exclusive." "In my practice," says Dr. Arnold Gold, who has diagnosed autism and other childhood disabilities for 45 years, "I always, in the end, attempt to be very positive. What can we do to enhance or improve the function of a given child?" Each child has weaknesses, but also strengths. Looking back, Diane Lento admits there was a "grieving period" for Kate. "You can continue to view your child as broken and sick and in need of being fixed -- or you can think, 'She's still my Kate,' '' she says. "She'll live the best life she can. Her life is not less than whole."
I have known perhaps 75 or 80 different families with autistic children since my son was diagnosed 10 years ago.
Perhaps one or two of those families conceived past the age of 40. The vast majority of us had our austic child in our late 20s, early 30s.
There is such a small percentage of autistic kids born to 40+ parents that that study and statistic are completely irrelevant.
I have known perhaps 75 or 80 different families with autistic children since my son was diagnosed 10 years ago.
Perhaps one or two of those families conceived past the age of 40. The vast majority of us had our austic child in our late 20s, early 30s.
There is such a small percentage of autistic kids born to 40+ parents that that study and statistic are completely irrelevant.
Agreed. My daughter was 19 when she had my grandson and his dad was 25. Not an age thing here either.
ADHD and autism are currently the flavor of the year diagnoses.
I'm pleased to see that someone with a little power is calling for a look at ultrasound. I personally KNOW that Pitocin-induction deliveries play a big, big part in the problem (see the 6/91 article on autism in the British Lancet), but I also believe that there are multiple genetic factors that lend a tendency in some family lines toward autistic manifestations from certain perinatal insults, and I believe ultrasound may constitute one of those. I recently learned that US is NOT actually ultrasound but RF or radio frequency, and I know an ultrasound tech who regularly does them for pregnancy dating and who says she would NEVER have one done if she was pregnant because she can see that it is uncomfortable for the fetus. RF is used to ablate aberrant nervous tissue in a heart wiring condition known as Wolff-Parkinson-White syndrome, which can make athletic types drop dead during exertion. It's also the player in the "ultrasound" treatments that heats up muscle tissue and bursae and thereby tames inflammation. It can cause significant burns and is the vehicle for cooking in a microwave oven.
I know for a fact it lyses red blood cells, so how can that be okay for a fetus? I think it's playing a part in the epidemic. It doesn't matter if it affects only 1 in 166 (very high incidence) if it affects even one child who would otherwise be free of autistic symptoms. Autism is a real BITCH for everyone concerned.
To determine date of confinement in pregnancy, it's close enough to figure forward from mid-cycle about 273 days or 10 lunar months (4 weeks each); you don't need to zap the fetus. Another pretty reliable method is to figure your doc is about a month early with his traditional calculation approach and can thereby snooker you into too much intervention because it's actually not time yet to deliver. Then you're into induction with an agent that dog breeders no longer use because of the morbidity/mortality rate and has been off-list since 1977 for human birthing but the doctors are still pushing because they have an important golf game.
Caveat emptor.
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