On Autism One: Illinois Threat To Special Education Law

Special on Autism One Radio
www.autismone.org/radio
Monday, October 23
10:00 am - 10:30 ET

ILLINOIS ALERT: THREAT TO SPECIAL EDUCATION LAW

"The Candy Store" hosts Robert and Sandy Waters welcome Beverley Holden Johns, President of the International Association of Special Education (IASE) in Illinois. Beverley Holden Johns has 35 years experience working with students with learning disabilities and students with severe behavioral disorders within the public schools of Illinois.

Services to Illinois students with learning disabilities and behavioral disorders are being jeopardized by the prospect of 50 pages of Illinois special ed law, which is more comprehensive, being replaced by Federal law.

Tune in to hear what may happen and how you can help.

Autistic Boy Wins Spelling Bee

This is from June, but it makes me so happy... so here":

Autism no hurdle for this champion

Dennis McCarthy, Columnist

Arlene Delaney was beginning to worry. The spelling bee championship at Oxnard Street Elementary School in North Hollywood had been going on for more than an hour, and the fifth-grade teacher was getting nervous about how one of her students, Kevin Livas-Hastings, was holding up.

Lights and noise often distracted the 11-year-old autistic boy, and she wanted to get him off that auditorium stage to a quiet, relaxed place as soon as possible.

But how could she? He was spelling every word right.

The only special-education student in her fifth-grade class was winning the competition.

More than 25 fifth-graders had started the spelling bee more than an hour earlier, and it was now down to two.

Kevin's classmates in the audience were going wild, cheering and clapping every time he aced another word.

"I kept looking at Kevin to make sure he was doing all right sitting up there for so long," Delaney said. "He'd look back at me smiling, giving me the thumbs-up sign every time he spelled a word right."

And now, after an hour and a half, it was just Kevin and a little girl from another classroom who finally misspelled her word - "congratulations."

Kevin spelled it right, then aced his word - "mathematics."

"Everybody went wild," Kevin said, smiling. "My classmates rushed up on stage and started hugging me. I felt great. Winning is so much fun."

In the back of the auditorium, Delaney; Gricelda Duenas, a teacher's aide; and Sandra Guardado, Kevin's one-on-one, special-education aide since first grade, hugged each other.

Then the women broke out the tissues.

"It's incredible how far this little boy has come," Guardado said Thursday, watching Kevin's classmates sign his T-shirt on the last day of school.

"In first grade he was so shy, isolating himself from all the other kids. Now he's one of the most popular boys in fifth grade, winning the school spelling bee. Amazing."

Yeah, it is, but not totally unexpected to Kevin's parents, Arnold and Ramona Livas-Hastings. They knew they had a special little boy on their hands when he was in kindergarten.

The doctors had told them that with autism often come some very special talents. Kevin began to display his every morning at the breakfast table.

"He started to read the morning newspaper with me by first grade, and by third grade he was reading words off my vitamin pill bottles," Arnold said, laughing.

"He was saying words I couldn't even pronounce."

After Kevin came home from school last week wearing his spelling bee medal, he made the rounds of all the neighbors to show them, his father said.

"He went from house to house, and all the neighbors were so thrilled for him. He was wearing a smile ear to ear. We're just so proud of how far our son has come."

So were his classmates at Oxnard Street school, saying goodbye for the summer to the only special-ed kid in class.

"You're cool," Jennifer Argueta said, signing Kevin's shirt and giving him a hug.

"He knows he's smarter than me. I finished eighth in the spelling bee."


Dennis McCarthy's column appears Tuesday, Thursday, Friday and Sunday.
dennis.mccarthy@dailynews.com
(818) 713-3749

Time/CNN: A Bizarre Study Suggests That Watching TV Causes Autism

A Bizarre Study Suggests That Watching TV Causes Autism

Viewpoint: Childhood vaccines, toxins, genes and now television watching? The alarming rise in autism rates is one of the biggest mysteries of modern medicine, but it's irresponsible to blame one factor without hard scientific proof.
By CLAUDIA WALLIS

Posted Friday, Oct. 20, 2006
Strange things happen when you apply the statistical methods of economics to medical science. You might say you get dismal science, but that's a bit glib. You certainly get some strange claims — like the contention of three economists that autism may be caused by watching too much television at a tender age. It gets stranger still when you look at the data upon which this argument is based. The as yet unpublished Cornell University study, which will be presented Friday at a health economics conference in Cambridge, Mass., is constructed from an analysis of reported autism cases, cable TV subscription data and weather reports. Yes, weather reports. And yet, it all makes some kind of sense in the realm of statistics. And it makes sense to author Gregg Easterbrook, who stirred the blogosphere this week with an article about the study on Slate, provocatively (and perhaps irresponsibly) titled "TV Really Might Cause Autism."

The alarming rise in autism rates in the U.S. and some other developed nations is one of the most anguishing mysteries of modern medicine — and the source of much desperate speculation by parents. In 1970, its incidence was thought to be just 1 in 2,500; today about 1 in 170 kids born in the U.S. fall somewhere on the autism spectrum (which includes Asperger's Syndrome), according to the Centers for Disease Control and Prevention. Some of the spike can be reasonably attributed to a new, broader definition of the disorder, better detection, mandatory reporting by schools and greater awareness of autism among doctors, parents and educators. Still, there's a nagging sense among many experts that some mysterious X-factor or factors in the environment tip genetically susceptible kids into autism, though efforts to pin it on childhood vaccines, mercury or other toxins haven't panned out. Genes alone can't explain it; the identical twin of a child with autism has only a 70% to 90% chance of being similarly afflicted.

Enter Michael Waldman, of Cornell's Johnson Graduate School of Management. He got to thinking that TV watching — already vaguely associated with ADHD — just might be factor X. That there was no medical research to support the idea didn't faze him. "I decided the only way it will get done is if I do it," he says. Waldman and fellow economists Sean Nicholson of Cornell and Nodir Adilov of Indiana University-Purdue were also undeterred by the fact that there are no reliable large-scale data on the viewing habits of kids ages 1 to 3 — the period when symptoms of autism are typically identified. They turned instead to what most scientists would consider wildly indirect measures: cable subscription data (reasoning that as more houses were wired for cable, more young kids were watching) and rainfall patterns (other research has correlated TV viewing with rainy weather).

Lo and behold, Waldman and colleagues found that reported autism cases within certain counties in California and Pennsylvania rose at rates that closely tracked cable subscriptions, rising fastest in counties with fastest-growing cable. The same was true of autism and rainfall patterns in California, Pennsylvania and Washington State. Their oddly definitive conclusions: "Approximately 17% of the growth in autism in California and Pennsylvania during the 1970s and 1980s was due to the growth of cable television," and "just under 40% of autism diagnoses in the three states studied is the result of television watching due to precipitation."

Result of? Due to? How can these researchers suggest causality when no actual TV watching was ever measured? "The standard interpretation of this type of analysis is that this is cause and effect," Waldman insists, adding that the 67-page study has been read by "half a dozen topnotch health economists."

Could there be something to this strange piece of statistical derring-do? It's not impossible, but it would take a lot more research to tease out its true significance. Meanwhile, it's hard to say just what these correlations measure. "You have to be very definitive about what you are looking at," says Vanderbilt University geneticist Pat Levitt. "How do you know, for instance, that it's not mold or mildew in the counties that have a lot of rain?" How do you know, for that matter, that as counties get more cable access, they don't also get more pediatricians scanning for autism? Easterbrook, though intrigued by the study, concedes that it could be indoor air quality rather than television that has a bearing on the development of autism. On a more biological level there's this problem, says Drexel Univeristy epidemiologist Craig Newschaffer: "They ignore the reasonable body of evidence that suggest that the pathologic process behind autism probably starts in utero" — i.e., long before a baby is born.

The week also brought a more definitive, though less splashy finding on the causes of autism, published in the Proceedings of the National Academy of Science. A team led by Levitt found that a fairly common gene variation — one that's present in 47% of the population — is associated with an increased risk of autism. People with two copies of the gene have twice the average risk of autism; those with one copy face a slightly increased risk. The gene is intriguing because it codes for a protein that's active not only in the brain — the organ most affected by autism — but also in the immune system and the gastrointestinal tract, two systems that function poorly in many people with autism. Levitt estimates that anywhere from five to 20 genes may underlie the vulnerability to autism. There are probably many routes to the disorder, involving diverse combinations of genes and noxious environmental influences. Could Teletubbies be one of them? Conceivably, but more likely the trouble starts way before TV watching begins.

With reporting by Alice Park/New York

UPDATE: Ann Dachel wants to know "Who Funded This Study"

To Cornell University Public Relations Officer Randall Sawyer, Professor Michael Waldman, and Sean Nicholson:

After seeing the bizarre Cornell University study suggesting a link between watching T.V. and the autism epidemic, I was enraged and insulted as a mother who has had almost two decades of struggle with an autistic son and having practically no resources or services. I'm also a person involved with several autism groups and many many parents across the U.S. and in Britain and I've heard from parents equally angry over this "research" on autism, a medical condition, done by economists.

Tonight I received an email from one father of an autistic child who asked this:

"One question. Who paid for the research? Guys at this level do nothing
for free."

I hadn't even thought about that. Who did fund the bogus TV-autism study? The TV industry obviously wouldn't. I really couldn't imagine any autism group considering this a legitimate theory.

I was dismayed by the coverage on so many news sites that treated this as something credible, although I was impressed by TIME-CNN which called the Cornell study "irresponsible."

Back to the dad who asked the question. He also sent me the attachments on this email about Sean Nicholson who was part of the TV-autism study.
(http://autismfiles.com/seannicholson.pdf and http://autismfiles.com/CV-NICHOLSON.pdf )

It's interesting to note that Nicholson is the focus of the article, The Benefits Are Mutual in New Wave of Biotech/Pharma Alliances. It is a strong defense of the pharmaceutical industry's connection with the biotech industry.

Although the research on TV as the cause of autism makes no mention of the drug industry, many in the autism community would find it interesting that a strong proponent of pharma, comes up with this theory.

If TV causes one in every 166 children to become autistic, then the heated controversy linking vaccines laced with mercury to autism would be irrelevant.

Now the question has been planted in my thinking:

WHO FUNDED THE STUDY?

Anne McElroy Dachel

UPDATE:

BlogHer has a good round up of Autie parents answer to the TV/Autism study at:

http://blogher.org/node/11847

LAT: Study Links Air Pollutants With Autism

Study Links Air Pollutants With Autism

Bay Area children with the disorder are 50% likelier to be from areas high in several toxic substances. Scientists say more research is needed.
By Marla Cone, LA Times Staff Writer
June 23, 2006

Children with autism disorders in the San Francisco Bay Area were 50% more likely to be born in neighborhoods with high amounts of several toxic air contaminants, particularly mercury, according to a first-of-its-kind study by the California Department of Health Services.

The new findings, which surprised the researchers, suggest that a mother's exposure to industrial air pollutants while pregnant might increase her child's risk of autism, a neurological condition increasingly diagnosed in the last 10 years.

But the scientists cautioned that the link they found in the Bay Area is uncertain and that more definitive evidence would be needed before concluding that mercury or any other pollutant could trigger autism.

Gayle Windham, the study's lead researcher and senior epidemiologist in the department's environmental health investigations branch, called it "a single small study" and "a first look" at whether toxic pollutants play a role in the neurological disorder, which is often marked by poor verbal and communication skills and withdrawal from social interaction.

Scientists have long wondered if the surge in diagnoses is due, in part, to environmental causes. Some of the increase comes from growing doctor and parent awareness, but experts say that cannot explain all of it.

"Clearly this suggests that there may be correlations between autism onset and environmental exposures, especially as it relates to metal exposures," said Isaac Pessah, a toxicologist who heads UC Davis' Center for Children's Environmental Health and Disease Prevention. Pessah, who was not involved in the study, is also a researcher at the university's MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, which studies autism.

"It would be prudent to reserve judgment until we see if this study can be replicated and whether it's of general significance" by looking for the same link outside the Bay Area, he said.

About 300,000 U.S. children have been diagnosed with autism and often need special education. The study compared 284 children from six Bay Area counties who were diagnosed as having so-called autism spectrum disorders — which include a less-severe syndrome called Asperger's — with 657 children from the same counties without the disorders. All were born in 1994.

The scientists reviewed data for 19 hazardous air pollutants that are known or suspected neurotoxins: chemicals that have a toxic effect on the brain.

They found that the children with the autism disorders were 50% more likely than the non-autistic children to be born in areas with higher estimated levels of three metals and two chlorinated solvents: mercury, cadmium, nickel, trichloroethylene and vinyl chloride. No significant link was found with 14 other solvents and metals, including compounds such as lead, benzene and chromium.

The national autism rate is six children per 1,000, so a 50% increase would elevate that rate to nine per 1,000.

The biggest increase came with heavy metals including mercury, a pollutant from power plants, factories and mines that can disrupt brain development.

The Bay Area was chosen for the study because extensive data are readily available there because of a federally funded program to count and track autistic children. The region's toxic air pollution is considered typical for urban areas.

San Francisco County had the highest estimated levels of metals and solvents, including mercury, and Marin County had the lowest of those studied. But the researchers did not compare autism prevalence by county.

In their report, published online Wednesday in the journal Environmental Health Perspectives, the authors said their research "suggests that living in areas with higher ambient levels of hazardous air pollutants, particularly metals and chlorinated solvents, during pregnancy or early childhood, may be associated with a moderately increased risk of autism. These findings illuminate the need for further scientific investigation, as they are biologically plausible but preliminary and require confirmation."

The study is the first to look for a connection between autism among children and levels of hazardous air pollutants at birth. Last year, scientists who compared volumes of industrial mercury emissions in Texas with autism in schoolchildren reported a similar link.

Autism is believed to start in the womb, early in pregnancy, when the brain develops. Genetic factors determine who is susceptible, but experts theorize that environmental factors contribute.

The new study found that mercury was the "most significant correlation with autism," Pessah said, "but every family may not be affected the same way because of their genetic makeup."

Many parents of autistic children blame vaccines that contained a type of mercury called thimerosal. Expert reviews have found no link between vaccines and autism, but some scientists do not consider them definitive.

No assumptions about vaccines can be made on the basis of the air pollution study. "Mercury in the air is a different type than in vaccines," Windham said.

The new study examined elemental mercury, which is released into the air from coal-burning power plants, chlorine factories and gold mines. It spreads globally and builds up in food chains, particularly in oceans. Levels of mercury are increasing in many parts of the world, largely from power plants in China and India.

The researchers had not expected to be able to discern a relationship between autism and the air pollution data.

The five metals and solvents are common industrial pollutants, but air is only one source of exposure, because they also contaminate water and food.

Some experts say that if there is a link between mercury and autism, it most likely comes from fish consumption, the main route of mercury exposure. A 20-year, ongoing study in Denmark's Faroe Islands has shown that children have slightly reduced intelligence when mothers consumed excessive mercury in seafood.

The largest limitation or uncertainty in the Bay Area study is that the pollution data did not come from measurements of compounds to which the mothers were actually exposed. Instead, they were based on estimates calculated by the U.S. Environmental Protection Agency using computer modeling of industrial emissions.

Windham said that "there could be other explanations" for the link they found. For example, it could be that women who live in the worst-polluted areas also smoke more or eat more contaminated seafood. The scientists did not track down the mothers to compare lifestyles.

Researchers at Johns Hopkins University's School of Public Health are conducting a similar study in the Baltimore area to see if they replicate the findings.

New York Magazine: The Autism Clause

The Autism Clause
A handful of new schools charge up to $140,000 a year to educate an autistic child. Who can pay that much? Anyone with the right lawyer.
By Alyssa Katz

It’s not entirely clear what’s wrong with Jasir Abdullah-Musa. When a fire engine screams by, he cries. When a fly buzzes into a room, he descends into tantrums. At his family’s home in the Flatlands section of Brooklyn, he flings his chubby 5-year-old body from couch to couch, ramming his head into the cushions and shifting between twisted poses. Jasir has a habit of recounting his daily routines ad infinitum—down to the color of the stripes on the bus and the menu at McDonald’s—but as he sizes up the stranger in his living room, he doesn’t say much, except to bellow “I want Rollos!” and “Noooo!”

If his mother, Melissa Glasgow, had accepted the Department of Education’s contention—that Jasir is simply language-impaired—he would be in a public-school special-education class with two teachers and eleven other kids with motley disabilities.

Last spring, however, she went searching for alternatives—and wound up in an office building on East 30th Street that would soon be home to the Rebecca School, a new for-profit academy for autism spectrum disorders—classic autism, Asperger’s syndrome, and the vague PDD-NOS, short for “pervasive developmental disorder, not otherwise specified.”

Jasir interacted with the school’s chief psychologist while Glasgow fantasized about the amenities: a video camera that wired to a central TiVo-like system, for ready replay to parents; a ceramics studio and music room; lights that don’t buzz or flicker; two “sensory gyms” full of swings and ropes and trampolines.

After a few hours, Jasir was invited to join the school, with promises of eventually being mainstreamed out of special education altogether. The tuition would be $72,500 a year, but the Rebecca School’s representatives insisted that that wouldn’t be a problem for Glasgow, who fields customer complaints for the MTA.

An administrator from the school handed Glasgow a folder and pointed to a page inside. “If you want to come here,” the rep said, “you ought to call one of these people on the list.” It was HEADED REIMBURSEMENT FOR PLACEMENT MADE BY PARENTS IN A PRIVATE SCHOOL. Below was contact information for five lawyers and basic instructions on how to sue the city of New York.

New York City’s open checkbook for autism is at the heart of the business plan for the Rebecca School, the latest in New York City’s fastest-growing chain of for-profit educational institutions. When it’s fully booked, perhaps two years from now, Rebecca will enroll 200 kids, making it the first megastore in a circuit of tiny boutique schools. The company launching it, Manhattan-based MetSchools, Inc., has spent $7 million to renovate 52,000 square feet of midtown office space (previously home to New York’s biggest abortion clinic).

MetSchools CEO Michael Koffler, 50, is not an educator himself but a graduate of suny–Buffalo who majored in accounting and business administration. He has a Queens accent that twists its way around spools of special-education jargon, and a commonsense profit model: He finds niches where New York City’s overstretched public and private systems have failed to tread. Like any business, it needs a revenue stream, and Koffler’s comes from city and state government.

His entrepreneurial strategy is rooted in the national reforms sparked by a 1972 exposé of Staten Island’s hellish Willowbrook State School, which shocked Congress into making sure disabled kids got a formal education. (At the time, nearly 2 million didn’t.) The result was a new law entitling all children to a “free and appropriate public education”—or a city-funded private one.

Realizing that there was more government money for disabled children than there were schools to serve them, Koffler and his wife, a speech therapist, opened the Sunshine Developmental School, their first special-education academy, in Queens Village in 1986. It started with just twelve children, ages 3 to 5, providing various therapies—speech, physical, and so on—to help developmentally disabled kids catch up with their peers. Today, the school, now located in Jamaica, enrolls more than 300 and collects $21,821 per student from the city each year.

From Sunshine, the Kofflers developed a thriving business out of what would seem to be a ruinous venture: educating poor kids. They proceeded to open other schools for children with special needs in Bedford-Stuyvesant and Williamsburg, among other neighborhoods. The government revenue streams multiplied, with payments from the city’s welfare agency, the Board of Ed, and the Administration for Children’s Services—adding up to at least $79 million in all.

In 2000, Koffler set his sights on the wealthy, finding baby-boomlets around the city where schools hadn’t yet caught up—like the financial district, where he opened the Claremont Preparatory School last year, with an annual tuition of $26,500 and room for up to 1,000 kids, though enrollment falls far short of that now. He briefly extended his reach to become lead partner in a chain of preschools in Georgia and North Carolina, then sold it off after trying for an IPO. (Koffler claims he lost $2 million on the deal.)

There’s a reason one of Koffler’s role models is Alexander Hamilton, the great capitalist who created the nation’s first federal programs (to support the banking industry) and pushed new taxes to finance them. Koffler has done very well in the usually not-so-lucrative business of publicly funded education. He lives in a midtown penthouse with river views, and last year donated $1.25 million to endow the Michael C. Koffler professorship in autism at Pace University. “I’m a hardworking kid from Queens,” he says.

The Rebecca School, which opened this September, drew its first class of 48 students from all over the city, the suburbs, and as far away as Shanghai. When filled to capacity, the school will gross more than $14 million a year, and Koffler projects that he’ll start earning a profit in two years. He expects that all of his students will sue the city for tuition reimbursement, though he estimates that only half are even aware that they can when they first walk in the door. “It’s always welcome news,” he says.

What’s most surprising about Rebecca is not the $72,500 tuition—or the fact that it’s a for-profit enterprise—but that it remains a relative bargain among autism programs. With a Wal-Mart-like economy of scale, Koffler is able to economize by assigning two children to every teacher or assistant, rather than the one-to-one ratio standard among elite programs. “When other schools are charging $80,000, $88,000, $120,000,” Koffler asks, “wouldn’t the right response be to go with our system?”

This year, the New York City public schools have budgeted nearly $824 million to pay private schools to educate children the system can’t help, up from a little over $82 million a decade ago—in part because of the national autism explosion, a phenomenon nobody can explain. (The latest theory, out of Cornell University, suggests a link to television-watching among children under 3.) In the eighties, the U.S. Centers for Disease Control estimated that 1 in 10,000 kids would develop some form of autism; now the rate is 1 in 166, or about 750 born every year in New York City.

The Department of Education reports that there are 4,423 autistic kids in public schools: Educators’ experience in the classroom suggests numbers as high as 15,000. Most wind up in special-education classes, alongside emotionally disturbed and mentally retarded kids with one teacher for every six to twelve students, at an average cost to the city of $34,816 a head. It’s the rare autistic student who receives specialized behavioral therapy, even though the New York State Department of Health recommends it as “an important element of any intervention program,” to be carried out by a trained therapist between 18 and 40 hours a week.

“It’s not just ‘Hire a lawyer and win.’ It’s ‘Ask for a hearing and win.’ ”

In addition to special-ed classes, there are another 732 spaces for children on “the spectrum” in a handful of state-regulated private schools that have a tuition cap of $48,000 a year, covered by the state and city. But those schools tend to be picky about which kids they’ll take: cute recitations of every stop on the J train, yes; banging head on desk while moaning, probably not.

That leaves parents of spurned children scrambling to find an education wherever they can—Jersey’s famed Alpine Learning Group, their living room, now Rebecca—and then sue the city for reimbursement. The tactic is not unique to autism—more than 4,700 special- education suits a year are filed against the city on behalf of kids with all types of learning disabilities, about two-thirds of them seeking private school. (Compare that with Chicago, where about 150 parents sue, though the number of autism lawsuits is growing there too.)

Four years ago, when the city was spending $13 million annually on special-education lawsuits, the then–school chancellor Harold Levy pleaded with the President’s Commission on Special Education to intervene to stop what he called “abuse of the system.” “Parents see the opportunity for their child’s private education to be paid for at public expense,” he railed. Last year, the city paid out $53 million on those same special-ed lawsuits.

Critics of the current system—and there are many in the education community—contend that most of those payouts are awarded to parents who are deft at working the system and affluent enough to pay $450-an-hour lawyers on the gamble, a pretty good one, that they’ll get it back. Even current school chancellor Joel Klein admits as much: “No doubt there are inequities based on people’s ability to navigate the legal system,” he says.

Most cities and suburbs, including Westchester and Long Island districts, manage to offer some semblance of appropriate education in the public schools. Parents of kids with autism outside New York can and do sue, but as likely as not, they lose. “You go to suburban school districts and it’s a rarity they can’t provide the right services for a child,” says Regina Skyer, a social worker turned special- education attorney.

The Autism Clause

New York is renowned as one of the only places in the country where parents who buy legal help can count on winning. Usually, lawyers never even have to prove the failings of the schools themselves, because the Board of Ed has missed some basic step, like putting together an education plan for the child (also required by law). Skyer ticks off a few other typical bureaucratic screwups: “They don’t hold meetings, they lose files, they don’t have mandated people at meetings, placements are not made in suitable groups.” Usually the educators who attend the legal hearings have never met the children.

In the past two years, the city has opted to pay 50 settlements of over $100,000 apiece—almost all for autistic kids—instead of fighting to the death in court. The city comptroller’s office rejected just one: a settlement of $387,400, for one year of therapy. “It’s not just ‘Hire a lawyer and win,’” says John Farago, a hearing officer who issues decisions on autism cases. “It’s ‘Ask for a hearing and win.’ ”

Attorney Gary Mayerson has a practice suing the city on behalf of autistic children.
(Photo: Courtesy of Gary Mayerson)

Six years ago, commercial litigator Gary Mayerson put out a shingle on West 38th Street and now has a four-attorney practice suing New York and other school districts for private education for autistic kids. For the 2005–2006 school year, Mayerson had 257 such cases—and has lost only two. “These are the cases where I still need to collect attorneys’ fees,” he says, pointing to a thick stack of purple folders on his desk. The Department of Education will pay for those, too.

Although Mayerson is on the Rebecca School’s go-to list, many of his clients come from the five-year-old McCarton School, a private autism program on the Upper East Side that charges $84,000 a year and advises its 23 kids to participate in personalized after-school programs that cost anywhere from $18,000 to $56,000 more. McCarton has a waiting list 127 names long; one family moved to the East Side from eastern Connecticut just to attend the school. Others have relocated from England, Colorado, and Texas. All can now get the city’s Department of Education to pay the bill.

Students who don’t attend the school can hire its founder, Cecelia McCarton, to perform an autism evaluation. It takes three months to get an appointment. Then, for about $2,500, she’ll do up an impeccable dossier on a kid’s issues and needs, a lethal weapon for any litigation to come and another expense the city winds up paying.

Mayerson also represents parents who homeschool their kids, hosting a parade of professionals each morning for some $80,000 a year. And some are starting their own schools. In a stucco house off Brooklyn’s Ocean Parkway, formerly home to a large Orthodox family, Imagine Academy offers kids daily yoga and a “sensory spa” where they can calm down by staring at soothing lights. “We decided we’re going to put in all the things we ever dreamed of and never got,” says Rebecca Harary, one of ten parent-founders. Her school has 28 staff for thirteen children and, like Koffler’s school, it’s hired as a consultant Stanley Greenspan, a Maryland doctor who has created his own proprietary method of autism treatment. Tuition there is $70,000, not counting after-school therapy.

“It might cost a million, a million and a half to save a kid. You’ve got kids going to schools that cost $20,000, $30,000, or $40,000, and they have worse outcomes.”

“It might cost a million, a million and a half to save a kid,” calculates Mayerson. “You’ve got some kids going to schools that cost $20,000 or $30,000 or $40,000, and they have worse outcomes. Wouldn’t you rather pay $100,000 a year for a few years and get a great education and productive members of society? Do the math.”

Mayerson doesn’t dare say autistic children can be cured. Rather, he prefers to say they “can be functionally remediated, so a child can be indistinguishable from other children.” That’s the hope Maggie and Robert Eigen hold for their son, Jake, a 7-year-old diagnosed with PDD-NOS who attends the McCarton School. On a recent day, Jake’s $46,000-a-year after-school program went something like this: At 3:15, a half-hour after the official school day ended, a young teacher named Jayshree Patel took Jake to play in the fountains at the Museum of Natural History, and then jumped in a cab with him to head for a trim at Cozy’s Cuts back on the East Side. At 5:30, she handed Jake off to his second teacher, Abi Leibovitch, who also works at McCarton during the day. First they wandered through the lobby of a movie theater on East 86th Street, where they’ve been working on making Jake less scared of big, dark spaces. Then they moved on to Logos Bookstore on York Avenue, where he tried pulling every kids’ book out of the rack, then to the diner on the corner of 86th for some ice cream.

The Autism Clause

This routine, which carries on most afternoons, year-round, can look like babysitting, and some of it is. But the deeper agenda is behavior modification. Jake’s parents—his mother is a nursery-school teacher with a master’s in early-childhood development, and his father owns a jewelry shop and a wine store on Madison Avenue—say McCarton’s “Applied Behavioral Analysis” therapy is the reason the family recently was able to take their first weekend trip since he was a toddler.

Jake can speak in brief sentences now, if you prompt him the right way. He shines with a charming if spacey smile; Maggie says he’s no longer the withdrawn creature who used to stand by the slide in the playground because he couldn’t figure out how to climb up. “In the past two years,” says Robert Eigen, “our life has changed.”

Jake’s transformation has cost $130,000 a year, and his parents have successfully recouped all of it from the city, Maggie Eigen says.

“What McCarton is striving for, a home program integrated with a school program, is a wonderful gold standard,” says Dr. David Salsberg, supervisor of pediatric psychology at Rusk Institute at the NYU Medical Center and an expert witness in tuition lawsuits against the city. “The downside is that this is a tremendous expense.”

Jake’s six-figure schooling may be harder to come by in the future. Last year, Chancellor Klein, who complains that too many lawsuits result in private-school placements, hired ten lawyers specifically to fight special-education claims. Also, the U.S. Supreme Court recently ruled that parents have to prove the public system has failed before they can go to private school. Koffler is certain that those reforms won’t affect him much. “If you do the right thing,” he declares, “why would you worry?”

As evidence of progress in public schools, Klein also points to 46 new prekindergarten autism classes and the year-old New York Center for Autism Charter School, the city’s first such program, on East 101st Street. There, teachers deploy behavioral drills, hundreds of them every week, to train seventeen autistic children to stop flapping their hands, or ask to go to the bathroom instead of in a diaper. They get rewards—some pretzels, some Gameboy time—for new tasks mastered. The school gets $62,000 a year in public funding per student and raises an additional $20,000 each from charity benefits like Jon Stewart’s recent “Night of Too Many Stars” at the Beacon Theater, which attracted comics from Sacha Baron Cohen to Steve Carell.

“The idea that parents should sue—it’s going to break the bank,” says the charter school’s co-founder Ilene Lainer, a labor-management lawyer from the Upper West Side and mother of an autistic 9-year-old. “The answer is to create programs that are publicly run.” Lainer knows the alternative all too well. Up until her son Ari landed a spot in a state-approved private school this year (he lost the lottery for a place in Lainer’s school), he spent five years alternating between her living room and a private academy in New Jersey. How did Lainer pay? She sued the city.

Texas Tyrant Stiffs Autistic Families

Texas tyrant stiffs autistic families
By Sidney Zion
New York Daily News

It comes down now that a guy named Joe from Texas is blocking the Congress of the United States from helping to combat autism.

Republican Rep. Joe Barton, by dint of his chairmanship of the House Committee on Energy and Commerce, has thus far been able to keep from the House floor a bill that unanimously passed the Senate and would deliver $900 million for research into this disease, which afflicts 1.5 million Americans.

The money, spread over five years, wouldn't pay for breakfast in Baghdad for our troops. Yet it is held hostage by Barton, who has said he won't move it until he gets a new bill reforming the National Institutes of Health. Which is a classic stall.

But the real question is this: How in our democracy is one man able to kill legislation all by himself?

In order to get an answer I called Barton, whose office did not return my calls. I called Speaker Dennis Hastert's staff - again, no return. I called the White House. They said nothing but, "The bill is being reviewed."

So I checked it out and found that in 1880, a House rule enabled a committee chairman to block legislation, giving him what's known as "gatekeeper power." But it was diluted over the years, and today the party leadership can easily overcome an intransigent chairman.

Hastert himself explained it best years ago, when he was the deputy whip. If they refuse to listen, "they won't be chairmen of their committees."

But now, their minds on the midterm elections, obviously the Republican leadership ain't talking. So why should Joe Barton listen?

The only reason would be the voters, but how can they hear if the media isn't making waves? And this is a conundrum - where is The New York Times and all the rest of the press we would expect to jump all over a reactionary like Barton?

Except there is the estimable Don Imus, who has made it a one-man crusade to get this legislation through and to depose Joe Barton.

I called Imus on Wednesday. He said, "I don't know whose payroll this guy is on. I thought it was our payroll. But maybe he'll be off our payroll in November."

If ``Imus in the Morning'' wants you, history shows you're toast by dinner.

But this time, even Imus could use help from the pols who say they want to help the kids, but are busy with other news.

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ABOUT THE WRITER

Sidney Zion is a columnist for the New York Daily News, 450 West 33rd Street, New York, N.Y. 10001.

Hello Again

2006 was a hard year for the Taylor family. We got to see, up close and personal, the lack of seriousness with which the rights and treatment of children with autism are taken in this world.

I plan on sharing the story of our hiatus eventually, but for now the wounds are still a little to fresh, so I will just ease back in for the mean time.

I am really happy to be able to come back, I have missed blogging. Thanks so much to those of you have written to me during my absence. It was really encouraging in a difficult time.

Patricia Heaton speaks to Joe Barton

On Hiatus

I thought that I would be able to return to blogging last month, but circumstances have dictated otherwise.

I am hoping to be back in the fall.

All the best to you and your little ones.

Ginger


While you wait:

How Mercury Causes Brain Neuron Degeneration

Tonight: Dateline NBC Autism Recovery

From Unlocking Autism:

Dateline NBC Autism Recovery

WHEN: Sunday evening, June 4th 2006 (9PM EST),

Dateline NBC has a 12 minute segment featuring Baxter Berle and Joshua Shoemaker, two children on the road to recovery from autism. The segment also includes information about the treatment research of Dr. James Adams.
http://www.scnm.edu/breakingNews.php

Dr. Jim Adams told people at the Autism One conference he saw the piece and thinks it is fair.

This past year Dateline NBC reviewed SCNM's chelation research study with autistic children, conducted exclusively by the Southwest College Research Institute at SCNM. It has been confirmed that the piece will air on Dateline NBC on the evening of June 4th. Please check your local listings for the correct time.

US scientists back autism link to MMR

US scientists back autism link to MMR
Telegraph.co.uk
(Filed: 29/05/2006)

The measles virus has been found in the guts of children with a form of autism, renewing fears over the safety of the MMR jab.

American researchers have revealed that 85 per cent of samples taken from autistic children with bowel disorders contain the virus. The strain is the same as the one used in the measles, mumps and rubella triple vaccine.

The findings will spark fresh concern about MMR, because they back theories of a causal link between the jab, autism and painful gut disorders suffered by a number of autistic children.

The study replicates findings made by the gastroenterologist Dr Andrew Wakefield in 1998 and Prof John O'Leary, a pathologist, in 2002.

Parents say their children were developing normally until they had the MMR jab, given when a child is between 12- and 18-months-old. The children now suffer from regressive autism.

One theory is that the virus passes through the gut, causing damage, and into the bloodstream, from where it is able to attack the brain.

More than 2,000 families claim that their children have suffered damage but the Department of Health reiterated last night that MMR is safe, a stance supported by the British Medical Association and all the Royal Colleges. Last year Government scientists failed to reproduce research results by Dr Wakefield.

Research to be presented this week in Montreal, Canada, provides fresh evidence that the measles virus is present in the guts of autistic children. Dr Stephen Walker, of the Wake Forest University School of Medicine, North Carolina, studied children with regressive autism and bowel disease. "Of the handful of results we have in so far, all are vaccine strain," he said.

Heavy Metals May Be Implicated In Autism

Heavy Metals May Be Implicated In Autism
National Autism Association

URINE samples from hundreds of French children have yielded evidence for a link between autism and exposure to heavy metals. If validated, the findings might mean some cases of autism could be treated with drugs that purge the body of heavy metals.

Samples from children with autism contained abnormally high levels of a family of proteins called porphyrins, which are precursors in the production of haem, the oxygen-carrying component in haemoglobin. Heavy metals block haem production, causing porphyrins to accumulate in urine. Concentrations of one molecule, coproporphyrin, were 2.6 times as high in urine from children with autism as in controls.

Autism is thought to have a number of unknown genetic and environmental causes. Richard Lathe of Pieta Research in Edinburgh, UK, says he has found one of these factors. "It's highly likely that heavy metals are responsible for childhood autistic disorder in a majority of cases," he claims. The study will appear in Toxicology and Applied Pharmacology.

Lathe says these porphyrin metabolites bind to receptors in the brain and have been linked with epilepsy and autism.

The researchers restored porphyrin concentrations to normal in 12 children by treating them with "chelation" drugs that mop up heavy metals and are then excreted. It is not yet known whether the children's symptoms have eased, but Lathe cites anecdotal reports suggesting the drugs might do some good.

--------------------------------------------

The study is available online at: http://filariane.org/anglais/DOC/MSFINAL.pdf

School System Loses Autism Case

School System Loses Autism Case
Judge faults Henrico for not taking child; ruling may cost hundreds of thousands

BY BILL MCKELWAY
TIMES-DISPATCH STAFF WRITER

May 27, 2006

A federal judge yesterday found the Henrico County school system knowingly and repeatedly failed to provide a system of instruction suitable to a severely autistic child.
Click here.

In a 79-page opinion laced with criticism of the school system's compliance with education disabilities law, U.S. District Judge Robert E. Payne sets hearings to determine what Henrico schools should pay for failing to meet federal standards of care.

Those costs could exceed hundreds of thousands of dollars in school tuition and legal fees, lawyers in the case said yesterday.

The school system declined direct comment on the case and referred all questions to its lawyer, Thomas Tokarz II. "I haven't read all [of the opinion] so I'm not in a position to comment," he said yesterday.

Tokarz did say the school system provides a broad range of opportunities to more than 7,000 special-education students and provides tuition for students who need instruction not available in the county.

Henrico spends $42 million a year on exceptional education, according to the school system. A figure for out-of-system tuition costs could not be determined yesterday.

Four years in the making and in federal court for two years, the case decided yesterday represents a rare instance in which a family of a disabled child has been able to counter school system opposition to costly programs tailored to particular disabilities.

"The doggedness with which Henrico County has fought this family is illustrated by the long life of this case," said Siran Faulders, who represented the family with William Hurd, both of Troutman Saunders LLP in Richmond.

Hurd said in a written statement that the decision in the case will serve as a message of hope for other families facing similar difficulties with their local school systems.

The case was brought by Courtney and Rick Tutwiler on behalf of their autistic son, Reid, now 8. The family was not identified in court documents but agreed yesterday to have their names made public.

"The opinion validates our belief that not only was it right that we pulled Reid out of the county school system but that what the county could offer Reid at the time was not appropriate," Courtney Tutwiler said yesterday.

Payne found that Henrico improperly offered Reid an educational program in which he would not make any more than minimal educational progress.

Payne ruled that evidence in the case showed Reid required a rigorous, intensive education program of between 20 and 30 hours of instruction per week. "The fifteen hours provided by the [county's plan] was insufficient," she said.

The Tutwiler's son began attending The Faison School in Richmond in December 2002 and immediately began showing huge strides in his ability to focus attention and speak. His vocabulary, almost nonexistent during his stay in Henrico schools, grew to 100 words.

Payne wrote that the system used by Henrico was not designed to, did not, and could not provide Reid with the intensive instruction he needed and eventually received at Faison.

"And, in the fall of 2002, the School Board understood that fact," Payne wrote.

The Tutwilers mortgaged their home, sought grants and poured salary increases into meeting Faison's $50,000 tuition costs when the school system declined to pay for Faison, even after a hearing officer ruled that Faison offered appropriate, needed instruction.

Those costs are mandated by federal law, Hurd and Faulders argued; Payne agreed.

The Faison School is one of a handful of private schools that specialize in education for autistic students. Autism is a brain disorder with a range of symptoms that generally deal with attention deficits, social failings and cognitive weaknesses.

"Reid would stare for hours at the sunlight shining through drops on the leaves," said his mother.

In Henrico he was described by teachers, evaluators and in testimony as having no communication skills and as mentally retarded.

Payne wrote that the school board rejected Faison as appropriate with merely conclusory remarks, ignoring any substantive appraisal of the program.

He sided with a hearing officer's conclusions that school officials seemed to have little awareness of Reid's condition, could not remember key facts, and in one witness' case gave testimony that contradicted her own reports.

At one point in a due-process hearing, Courtney Tutwiler recalled a teacher telling her that a particular school program in Henrico has become a dumping ground for the children of parents who complain.

The teacher denied making the statement but Payne wrote that he could not find anything in the record to discredit Tutwiler's recollection.

Reid began attending Henrico schools again two months ago. The Tutwilers said the school now provides a one-on-one aide who has been trained in the methods used at Faison.

"They've come a long way, but there's still a long way to go," Courtney Tutwiler said.

The differences between her son today and six years ago are immense but simply stated.

"He can communicate. It was a very big step for him to realize that other people even exist."

Contact staff writer Bill McKelway at bmckelway@timesdispatch.com or (804) 649-6601.