What's Causing the Rise in Autism?
"Part of it could be due to changes in diagnostic criteria and
better diagnosis. Do we think that accounts for all of the increase?
The answer is no."
[By Tracy Connor in the NY Post October 10, 2000]
Developmental pediatrician Cecelia McCarton used to see one or two autistic children a year. These days, three or four new patients come into her Manhattan office every week.
"It's the new epidemic," McCarton says - and there's plenty of evidence she's right.
Professionals and parents across the city are reporting a surge in autism, a spectrum of developmental disabilities that can lock children in an invisible prison.
Speech pathologist Margery Rappaport saw her first autistic child a decade ago. Now these "lost children" make up 75 percent of her client roster.
"The world thinks of 'Rain Man' when they hear 'autism.' They think it's a death sentence. They don't realize how complex and pervasive it is," Rappaport says.
Just how many people have autism or a related disorder is unknown, but the federal government acknowledges the numbers are growing.
In the mid-1980s, the figure tossed around was 1 in 2,500. The Centers for Disease Control and Prevention estimates as many as 1 in 500 people have autism today. There are indications that's a conservative estimate. A federal study in Brick Township, N.J., found 1 in 250 children with autism - and no reason why the disorder should be more prevalent there.
Locally, the Department of Mental Health estimates there are 11,000 people in the city with autism, but adds that number could be higher. The Board of Education reports a 60 percent increase in the number of students in its autism programs, from 1,544 in 1996 to 2,450 this year.
Statewide figures have doubled, from 2,550 preschool and school-age kids in 1994, to 5,142 by the end of 1998.
Sandy Levine, executive director of the Autism Foundation of New York, believes there is an "autism cluster" on Staten Island and is pushing for an epidemiological study.
"It's worse than an epidemic because we're going to have our hands full for 20 or 30 years," says Levine, the father of a 6-year-old autistic boy. "It's heartbreaking."
First recognized in 1943, autism is a collection of communication, social and behavioral disorders. At its worst, it can leave a child trapped in an impenetrable shell. But many people with autism are high-functioning and others make tremendous strides through treatment.
Movies like "Rain Man" and celebrities who have autistic children, including actor Sylvester Stallone and football stars Doug Flutie and Dan Marino, have helped raise awareness of autism.
But for decades, autism was a hidden, grossly misunderstood condition, labeled as a psychological disorder caused by bad parenting by "refrigerator mothers."
Fortunately, the medical community now realizes it's a neuro-biological condition that is probably influenced by more than a dozen genes. Still, scientists don't know exactly what causes it - genetics alone, a virus or a toxin - or why the numbers are skyrocketing.
"Part of it could be due to changes in diagnostic criteria and better diagnosis," said Marie Bristol-Powers, coordinator of autism programs at the National Institute of Mental Health.
"Do we think that accounts for all of the increase? The answer is no."
The fiercest debate is over the etiology centers on vaccines, a powder-keg issue that has been the subject of congressional hearings and dueling scientific reports. Suspicion about childhood vaccines cropped up because children often exhibit autistic behaviors around 18 months of age, after receiving the shots.
One 1998 British study found a correlation between the MMR injection (measles, mumps, rubella) and the spike in autism cases, but a subsequent survey swiftly shot down those findings.
The Centers for Disease Control and Prevention and the National Institute of Mental Health insist there is no evidence of a link, but that hasn't quieted speculation that the live viruses of mercury preservatives in the vaccines trigger autism in susceptible children.
"There's no other explanation for this huge upsurge," says Dr. Bernard Rimland of the Autism Research Institute.
Whatever the cause, there's little question the sharp increase in autism cases has created new pressures.
Lawyer Gary Mayerson, the father of an autistic child, recently launched a firm dedicated to fighting for education services for afflicted children.
Studies have shown intensive one-on-one behavioral therapy is the most effective treatment for autistic kids, but good programs can cost anywhere from $20,000 to $100,000 a year.
"Scientists have known about [behavioral therapy] for years, but school districts have been slow to pick it up or they pay lip service to it or they don't want to pay for it," he says. Mayerson has 90 clients who are pushing for school districts to pick up the tab for special programs, and a third of those cases will probably go to court.
The good news, he says, is that New York City and most of New York state and New Jersey are progressive compared to other parts of the country.
But Andrew Baumann, president of the Autism Coalition of the Empire State and the father of a 7-year-old autistic boy, notes that awareness doesn't always equal treatment. "There are not enough services available. You say, 'OK, I'll find a good service provider.' They tell you, 'Sorry, we have a five-year waiting list,'" he says. "Then you go to your insurance company and they say, 'We don't cover that.' "Everything is a battle. Everything is a fight," he says. "These kids are lost souls, and we just want to get them the help they deserve."
M.I.N.D. Institute Unveils New Web Address
The M.I.N.D. Institute has gone live with a new web site address:
This is from the home page:
"It is the dream of every parent to bear and raise a healthy
For growing numbers of families, however, neurodevelopmental disorders transform these dreams into a nightmare. To help those with neurodevelopmental disorders live active and healthy lives, the University of California, Davis, Health System has established a unique interdisciplinary institute to conduct research and provide clinical programs focused on these disorders.
Our vision for the institute includes becoming a national resource for the study and treatment of neurodevelopmental disorders. Leading scientists, physicians and educators in fields as diverse as molecular genetics and clinical pediatrics are joining forces to better understand development and brain function.
The Institute will focus on neurodevelopmental disorders in children and adults, including:
Autism and Autism Spectrum Disorders Pervasive Developmental Disorder Cerebral Palsy Tourette's Syndrome Mental Retardation Attention Deficit Hyperactivity Disorder Dyslexia Other Learning, Developmental Delay, and Communication Disorders
To learn more about the M.I.N.D. Institute, join our mailing list, or contact:
Andrea Verdon, Administrative Assistant
Children's Development Database Available
Children's Development Database, a newly launched, non-profit foundation formed by Dr. Sidney Baker and several trustees (who are all parents of developmentally disabled children).
The goal of CDD is to analyze and add to the database of information of the clinical and laboratory findings about autistic and other developmentally disabled children. Dr. Baker has amassed this database and plans to publish our findings on the web so parents and others have access to this information as quickly as we can it check it for accuracy and post it on the CDD website. (Note please that the identities of the patients in the database will never be disclosed - we will present aggregated data only.)
We will be putting up our latest secretin results pages as well as other information about the patterns we see among the children in the database, so check back frequently for new information (we will also notify the lists when we add new info).
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