AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Wednesday December 26, 2001
INDEX:
* Circle
of friends supports parents of autistic children
* Howard
plans to test every four-year-old
* Pediatric
testing program extended
* Algeria
Investigating Baby Vaccine Deaths
* Abnormalities
Seen in Brains of People with Autism
* Sheriff’s
deputy Robert Kahn is doing his part to help keep kids from
being harmed
******************************
Circle of friends
supports parents of autistic children
By MATT TULLIS
Staff Writer WOOSTER
The rehabilitation department at Wooster Community Hospital is trying to
help ease the burden on parents of autistic children."There are quite a
few parents out there with children that have autism," said Brian Coote,
director of rehabilitation services at the hospital. "Typically what we
find is an exceptional parent behind that person, someone who has tried to do
everything they can to let this child come out of their shell."There is a
lot of time and energy spent, and they need a break from that, to meet with
other parents and pool information. That is really how this got
started."Coote said a support group is the brainchild of rehab specialist
Kara DeRodes, who has been working closely with autistic children. The group
has been meeting irregularly, but beginning next year, will meet quarterly.
Meeting four times a year can allow the hospital to pull in additional
resources for the meeting, said Coote."The first (meeting) we had, we didn't
have any special speakers," DeRodes said. "We just had an informal
meeting introducing each other, seeing what topics they needed more information
on. "A lot of them thanked us because they've been waiting so long. There
have been certain groups of parents who have known of one or two others and may
have started something on their own, but they didn't have the resources to keep
it in place."Coote said the hospital also will offer baby-sitting so these
parents can get away from home for the meeting.The group is open to parents of
children with all levels of autism, DeRodes said. That includes asperger's and
pervasive developmental disorder."They are all very related," DeRodes
said. "They are basically just different degrees of each other."They
affect a child's ability to communicate, understand language, play and relate
to others. It's kind of a social communication disorder, but other things
usually go along with it like obsessive compulsive tendencies and other
disorders like attention deficit."Autism and the other neurological
disorders that fall under the autism umbrella are hard to diagnose, DeRodes
said."There's no physical thing you can see when they're born," she
said, "but it's something that, by 3, you notice things that just aren't
quite right. It's hard to put a finger on it, why they don't play with other
kids, why they don't sit on your lap, why they just line up toys and don't want
to play with them."Reporter Matt Tullis can be reached at (330)
287-1623.
http://www.the-daily-record.com/011224dr4.html
******************************
Howard plans to test every four-year-old
SIMON KEARNEY and PIERS AKERMAN
23dec01
PRIME Minister John Howard will embark on radical social welfare reform to help
disadvantaged children as a major platform of his government's third term.
All four-year-olds may undergo testing to identify developmental problems and
free child care could be tried for low-income families. Mr Howard wants to
transform how government policies affect families, expectant mothers and young
children as one of his political legacies before he retires. "Call it
preventative welfare," the Prime Minister said. "We immunise children
as a preventative health measure; this project is providing them with the
assistance necessary to give them the right social immunisation." Mr
Howard said the Government should also be pro-active in helping children in
their very early stages to ensure that they received the best opportunities in
life. "Early intervention in cases where children are at risk may have
enormous social and economic benefits. "There are some very good studies
indicating that it is possible to isolate youngsters from criminal
environments, to ensure they attend school, if intervention occurs at an early
stage," he said. Mr Howard has been inspired by research conducted by
prominent child health expert Professor Fiona Stanley, and the Family and
Community Services Department has set up a high-level task force to look into
the proposals that she has put forward. Professor Stanley, who heads the
Institute of Child Health Research, said it was crucial for governments to
address how to reverse growing problems with the physical, emotional and
intellectual development of Australian children. She said testing of
4-year-olds and 5-year-olds would be one way to help predict the children's
future scholastic performance by pinpointing any problems early, and help
children from struggling families get a better start in life. But the plan is
far broader than just those tests. "Let's go for a report card on
Australian children and youth," Professor Stanley said. "This is an
indicator of how we are doing what humans do best, which is grow our children
– and we ain't doin' well." Professor Stanley said that to improve the
standard of child development, free child care for poor families should be
tried. She said a US study had found that child care with a strong education
focus for poor black mothers had produced a 20-point increase in their
children's IQ levels and a nine-point increase among the mothers. "That
really started to break the cycle of poverty, poor education and poor
achievement," she said. Professor Stanley has also found one in five high
school students has a mental health problem, birth weights have dropped and
male suicide has quadrupled in the past 40 years. "We are observing
epidemics of mental health problems (such as suicides, risk-taking behaviours,
ADHD, depression, eating disorders), of asthma, and other complex diseases
(pre-term births and low birth weight, diabetes, inflammatory bowel disease,
autism and cerebral palsy)," she said. "Those in other research
disciplines such as education and the social sciences are observing similar
increases in . . . problems in children and young people (behavioural problems,
learning disabilities, school drop-out) and in juvenile crime."
http://www.thesundaymail.news.com.au/common/story_page/0,5936,3482362%255E903,00.html
******************************
Pediatric testing program extended
By Alice Dembner, Globe Staff, 12/20/2001
federal program that has spurred the testing of new
medicines in children will be extended five years, but without the protections
for children and curbs on drug company profits that some had sought. Since
Congress set up the pediatric testing program in 1997, drug companies have
received a financial incentive to test their products on children, as well as
adults. The program has improved understanding of how drugs affect children,
but also raised concerns that such widespread testing - which involved 45,000
children this year - could jeopardize children's safety.The bill forwarded
yesterday to President Bush answers critics by commissioning a study from the
prestigious Institute of Medicine on the risks of testing drugs on children. It
does not, however, impose new oversight of that testing.It closes a loophole
that one drug company tried to use to keep competitors' drugs off the market
for years, but continues its primary incentive: a patent extension often worth
hundreds of millions of dollars to drug producers.''The bill gives too generous
a carrot to the companies to do what they should be doing anyway,'' said
Representative Henry Waxman, a California Democrat, who sponsored the original
bill but voted against the renewal.The program was originally triggered by
doctors' concerns about the lack of good information on prescribing drugs for
children. Most drugs on the market, although approved for adults, have never
been tested for safety or proper dosage in children. To encourage testing,
Congress authorized a six-month patent extension for companies that ran tests
on children. Since 1997, 42 drugs have won the patent extension, including the
antidepressant Prozac and the antihistamine Claritin, both of which generated
nearly a billion dollars more in sales as a result of the extension. The tests
on children cost the companies at most a few million dollars. A study by the
Food and Drug Administration found that the program added about $695 million to
the nation's yearly drug bill by keeping cheaper generic versions of drugs off
the market for an additional six months.Two dozen of the drugs now bear labels
telling doctors precisely how to use them for children, and more label changes
are in the works. In one critical study, the anesthesia drug Propofol was
linked to a much higher rate of death among critically ill children than other
sedatives.''It's a major step forward for improvements in pediatric drug
therapy,'' said Dr. Robert Ward, chairman of the drug committee of the American
Academy of Pediatrics. ''The first bill got us moving ahead, and we can really
build on it over the next five years.''Although important drugs for AIDS,
epilepsy, and psychiatric disorders are now specifically labeled for use in
children, many of the most commonly prescribed drugs remain unstudied. These
drugs, including the antibiotic ampicillin and the allergy medicine albuterol,
are no longer covered by patent so drug companies have no financial incentive
to study them.Congress ignored a request by the FDA to authorize tax breaks for
companies that test these drugs. Instead, the new bill authorizes a charitable
fund to pay for independent studies of these medicines. Ward said he doubted
that fund would be large enough to cover needed tests.Congress did close a
loophole that one major drugmaker, Bristol-Myers Squibb, tried to parlay into
31/2 extra years of patent exclusivity after winning the six-month extension
for its diabetes drug Glucophage. This year, the company sold nearly $2 billion
of the drug, which is rarely used in children.Yesterday, Bristol-Myers
spokesman Bob Laverty said the bill, as approved by Congress, ''effectively
takes away the company's legal right to exclusively market this medicine and
does so retroactively, which is both unfair and unconstitutional.''On the issue
of safety, some ethicists and child advocates worry that the explosion of
testing would subject some children to harmful drugs. A Boston Globe series
last spring found that medical experiments had killed eight children and injured
hundreds of others in the last few years.''Congress should have imposed
mandatory monitoring of pediatric trials, including unannounced inspections,''
said Vera Sharov, president of the Alliance for Human Research Protection.
''The extension of this legislation is a bonanza for the drug industry, and in
some cases it may be a real threat to children's health.''This story ran on
page A8 of the Boston Globe on 12/20/2001.
http://www.boston.com/dailyglobe2/354/nation/Pediatric_testing_program_extended+.shtml
******************************
Algeria Investigating Baby Vaccine Deaths
ALGIERS (Reuters) - Algeria said on
Sunday it was investigating the sudden deaths of seven babies who had been
inoculated with a measles vaccine.The official APS news agency said another 28
infants who had been treated as a precaution left a hospital on Sunday in Oued
al Abtal village, in Mascara region, 310 km (190 miles) west of Algiers. The
seven babies died on Saturday shortly after being vaccinated at the hospital.Health
Minister Abdelhamid Aberkane told state-run radio the vaccine itself probably
was not to blame for the deaths, arguing it had been used in Algeria for a long
time. He hinted that ``a lack of vigilance'' may have caused the deaths. But he
said the ministry had banned the use of the vaccine, called Rovax, until the
inquiry's results were announced.``We shall know what happened between the use
of this vaccine and the way it was given to the seven infants. The same vaccine
is being used throughout the homeland. There are no problems with it and it is
valid until 2003, and has not expired,'' he added.On Saturday, the ministry
said in a statement it had sent a team to the Oued al Abtal hospital to probe
the deaths.
http://dailynews.yahoo.com/h/nm/20011224/hl/algeria_1.html
******************************
Abnormalities Seen in Brains of People with Autism
By Merritt McKinneyNEW YORK (Reuters
Health) - A brain pathway that regulates neurons in the brain may be disturbed
in people with autism, Maryland researchers report.The findings do not prove
that the abnormalities cause autism, the study's lead author told Reuters
Health. But the identification of the abnormalities at least gives scientists a
pathway to focus on as they investigate possible causes of autism, according to
Dr. Jonathan Pevsner at the Kennedy Krieger Institute and Johns Hopkins
University in Baltimore, Maryland.Autism, which often impairs a person's
ability to communicate and form relationships with other people, usually begins
within the first few years of life. Autism may also affect the ability to
respond properly to sights, sounds and touch. Though some children with the
disorder are mentally impaired, about one-third are ``high-functioning,''
meaning that they have a normal or near-normal IQ.Autism is ``extremely
common,'' Pevsner said, affecting about 1 out of every 500 children. The
disorder is thought to be genetic, but no one has identified any responsible
genes yet, the researcher added.To see whether they could detect any brain abnormalities
on the molecular level, Pevsner and his colleagues used technology called
microarrays to examine the brains of 10 people with autism who died and a
``control'' group of 23 people who did not have the disorder. Their findings
were published in the journal Neurology.Using microarrays, which make it
possible to view thousands of genes at once on a glass microscope slide,
scientists can tell which genes are expressed, or turned on, in a sample of
tissue. In this study, the researchers studied the expression of more than
9,000 genes in the cerebellum, a part of the brain known to be affected by
autism.``There are some consistent, dramatic differences'' between the brains
of autistic people and the control group, Pevsner said.Pevsner's team found that
the pathway for the brain chemical glutamate was disturbed in the brains of
people with autism. Glutamate, a neurotransmitter, helps different parts of the
brain communicate with one other. The chemical tells neurons when ``to fire,''
Pevsner explained.It is too early to know whether these changes are a cause of
autism or are instead a result of something else, such as seizures, according
to Pevsner. He noted that several of the patients in the study had a history of
seizures. However, Pevsner said he and his colleagues did not detect a link
between the seizures and the brain abnormalities, Pevsner said.The
investigators plan to continue studying the glutamate pathway to get a better
understanding of its potential role in autism. Of interest to the researchers,
Pevsner said, is ''whether there are drugs that affect the function of this
pathway.''SOURCE: Neurology 2001;57:1618-1628
http://dailynews.yahoo.com/h/nm/20011224/hl/autism_brain_1.html
******************************
Smart
book
Sheriff’s deputy
Robert Kahn is doing his part
to help keep kids from being harmed
Tracy Jacobs
12/21/2001 04:54 pm
Scott Sady/RGJ
FOR A CAUSE: Author Robert “Bob” Kahn holds two books he has written to
help children and adults understand the dangers of strangers and bullies.
Robert Kahn wants to keep his kids safe. He wants to keep your kids safe too,
but he can’t be everywhere at one time.So he wrote the books “Too Safe for
Strangers,” and “Too Smart for Bullies.” He has two more “Too Smart”
books for release in January and has seven more in the works.“These are the
things kids really need,” Kahn said. “(The books) give kids all the basics
to be safe in any situation.”The books’ narrator is Kahn’s son, Bobby,
11. Daughter Mandee, 9, is the main character. His son, however, plays an even
greater role in the books.“(Bobby) is a high- functioning autistic,” Kahn
said. “He is very literal. If he can understand the books, anybody
can.”Kahn stresses the books’ simplicity. He said he wants everyone to be
able to use them.“Hand it to a child,” he said. “The baby sitter, mom,
dad, everybody can understand these books. There are no trick words —
they’re extremely literal.”“Strangers” introduces kids to the
“stranger/danger” concept: Strangers could mean danger.“Bad strangers
have many bad tricks to get you to go with them,” the narrator of the book
says. “Always remember that good strangers talk to grown-ups and ask other
grown-ups to help them when they need help finding their children, puppies,
kittens, or want any other favor.”As a sheriff’s deputy and the Lyon County
Drug Abuse Resistance Education officer, Kahn knows what dangers kids face. He
also knows a little bit about teaching kids what they need to be aware of —
he holds a master’s degree in education.He spends his days with special
deputy Pat Marble in classrooms teaching kids about strangers and showing them
how to say “no” to drugs, among other topics.“We’re in every classroom
— kindergarten through fourth grade — every classroom in Lyon County,”
Kahn said.Kahn and Marble visit classrooms repeatedly each school year to
ensure that kids get the message about the dangers children face today.“The
main age when something happens to a kid is fourth, fifth and sixth grade,”
Kahn said. “They have to do more things alone. We have to teach kids this
stuff before then.”Marble said even the kindergartners are smart enough to
learn things to keep them safe.“The thing with kids is they know if you’re
fooling them,” Marble said. “We teach them they are never too young to help
themselves.”Lyon County Sheriff Sid Smith believes the “Too Safe” books
hammer home safety points that kids otherwise might miss.“The obvious
(benefit) is teaching children, because they don’t always listen to their
parents,” Smith said.Kahn said he hopes someday the “Too Safe” books will
be on shelves in classrooms, libraries and everywhere children and parents
go.Even if the books never become a national best-seller, said Bob’s wife,
Kandee, she knows Bob was meant to write the books.“He couldn’t find a
publisher for a long time,” Kandee said. “Then when he was just about to
give up a Dayton County deputy sheriff called to tell Bob congratulations and
thanks.”The sheriff’s deputy said someone had tried to abduct a little girl
who had recently learned “stranger/danger” from Kahn. But, thanks to Kahn,
she knew what to do and got away. Kahn was credited with saving her
life.“That’s when Bob said, ‘OK God, I got a clue,’” she said. “It
wasn’t too much longer, he finally got his books published.”Where to find
books by Robert Kahn“Bobby and Mandee’s Too Smart for Bullies,” and
“Bobby and Mandee’s Too Safe for Strangers,” books are available for
individual purchase or for anyone who would like to carry the books in their
store at www.FutureHorizons-autism.com. For more information: Write to Future
Horizons, Inc., 721 W. Abram St., Arlington, Texas 76013, call 800-489-0727 or
e-mail info@FutureHorizons-autism.com.Three top things for kids to be taught
and remember:Always tell a trusted adult where you are going.Never, ever, get
into a car with someone unless your parents told you to.When adults need
something, like directions or a favor or have something to give away, they need
to find another adult.Three things each of Kahn’s “Too Smart” books
teach:911 tips for parents and children.Children’s addresses, phone numbers
and emergency numbers.A list of safe grown-ups who help if there is an
emergency.
http://www.rgj.com/news/stories/html/2001/12/21/4445.php
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