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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Monday January 14, 2002
INDEX:
* Blair hints at
Leo's MMR jab
* Facing autism
* Parents seek respite from hard-to-manage child
* I Am Sam
* Critics of practice say it's dangerous and prone to misuse
* Accurate diagnosis is key but can be elusive
******************************
Blair hints at Leo's MMR jab
Tony Blair has given his strongest indication yet that his baby son Leo has had
or will have the controversial MMR vaccine.Mr Blair has refused to explicitly
say whether 20-month-old Leo has been given the combined measles, mumps and
rubella vaccine.He told the BBC this was because he thought it would open the
floodgates for other issues relating to his children.He added: "I would
not be asking people or saying to people we advise you to do this if I thought
it was dangerous for my own child."The premier and ministers came under
fire before Christmas after parents' groups and the Tories insisted they should
say whether their children had been given the jab, which has been linked to
autism by one researcher.Mr Blair then issued a strongly worded statement in
which he attacked invasion of his family's privacy but in which he also gave
his backing for MMR. He said it would be difficult to draw a line once he
discussed one issue relating to his children.The Prime Minister added:
"What people need and should have the reassurance about is this: that we
are completely behind the campaign to make sure that people do the
vaccination."We believe it is safe. We believe the evidence not merely of
the Government's Chief Medical Officer but also the Royal Colleges, of
virtually every single independent body that's looked at this."He added:
"I understand why people say, well it's important that you tell us
everything that your own children are doing."But it doesn't work like
that. The moment we do this we're then asked, and it would be perfectly
legitimate then to ask us further details of the treatment and so on."
http://www.ananova.com/news/story/sm_494110.html?menu=news.politics
******************************
Facing autism
While science seeks the hows and whys, families search for new ways to connect,
care and cope By Scott LaFee
UNION-TRIBUNE
STAFF WRITER January 12, 2002 
HOWARD LIPIN / Union-Tribune
Unlike some autistic children, Stephen Adams enjoys toys, which provides his
parents and teachers with another means of connecting with him.
Part
One: Mental Blocked
As rates of autism rise, research has determined that autistic brains develop
differently from normal brains, but understanding about cause and treatment
remains elusive. Skepticism and even downright hostility cloud the relationship
between scientists and families with autistic children. Part Two: Facing
Autism
First, the hard part is hearing that your child is autistic, say parents. The
second struggle -- an ongoing one -- is getting the help the child needs.
Families talk about the ramifications of the disease of "lost
children."
Books
on autism and related diseases
It was part of the routine most mornings: Stephen Adams would wake up hungry,
eager for breakfast. His mother, Emma, would prepare it, then ask Stephen:
"What do you say?" "Peas," Stephen, then 16 months old,
would cheerfully reply. One morning Stephen' s mother asked and he didn' t
answer. "He looked dumbfounded, like he didn' t know what I was talking
about," Adams recalled. "He didn' t say peas -- please -- again until
he was 4." Within months of no longer saying please, Stephen didn' t say
anything at all. His language skills, which had been typical for a toddler his
age, vanished. Then Stephen did, too. "He stopped smiling and
laughing," said Adams. "He just sat there. He wasn' t the boy I knew.
I didn' t know what was happening. I thought he might be acting out because he
missed his father, who' s in the Navy and sometimes has to go to sea for months
at a time." But that wasn' t the problem. Stephen, it would turn out, is
autistic. In many ways, autism is about lost children. It is a disease -- a
spectrum of neurological disorders, really -- that are typically diagnosed
around the age of 2. In cases such as Stephen' s, apparently normal children
suddenly are not. Early language and social skills fade, then disappear.
Inexplicable, sometimes dangerous, behaviors emerge. Parents watch helplessly
as their child transforms into somebody they do not recognize -- and who often
does not recognize them. Red flags Warning signs of autism: A definitive diagnosis of autism requires
a thorough medical and psychological evaluation by specialists. However,
certain persistent behaviors may be red flags for autism in a young child.
Does not respond to his or her name.
Cannot explain what he or she wants.
Language skills or speech are delayed.
Used to say a few words or babble, but now doesn' t.
Appears, at times, to be deaf.
Does not follow directions.
Does not wave or point bye-bye.
Throws intense or violent tantrums.
Displays odd movement patterns.
Is hyperactive, uncooperative or oppositional.
Doesn' t know how to play with toys.
Doesn' t smile when smiled at.
Has poor eye contact.
Seems to prefer to play alone.
Is very independent for his or her age.
Seems to tune people out.
Is not interested in other children.
Walks on his or her toes.
Shows unusual attachment to toys, objects or schedules.
Spends a lot of time lining things up or putting things in a certain order.
Victoria Ikerd remembers when her son, Jacob Cogar, changed. At the time, Ikerd
already was caring for a 3-year-old autistic daughter, Savine. Like Stephen,
Savine Cogar had seemed a typical child until she was 1-1/2 years old. That' s
when she stopped saying words such as "hi" and "bye" and
"mama." "I don' t think I realized it immediately," said
Ikerd. "It' s not like you expect your child to just not talk one
day." Savine began acting odd. She giggled for no reason. She avoided eye
contact. She couldn' t tolerate people singing. Ikerd feared Jacob was
similarly fated. At 10 months, she had him assessed by doctors. He checked out
fine. At 15 months, he still seemed OK. Jacob wasn' t walking yet, but Ikerd
was not overly concerned. "But that' s when he started falling away from
me. He began pacing and stomping in patterns, pressing buttons on and off. He
wouldn' t play with toys. He wasn' t a little boy who wanted to play with you.
He was calm, very easy to take care of, but he wasn' t really interacting with
us anymore. We didn' t seem to be there." Growing numbers
The cause or causes of autism are not known, but the disease
appears to be on the rise -- everywhere. In California, there has been a 273
percent jump in diagnosed cases between 1987 and 1998. Studies show similar or
greater increases in places such as Michigan, Florida, England and Japan.
Scientists once estimated autism struck one child in 10,000; now the ratio is
up to one in 500, perhaps higher. No one knows why. Medical science has more
questions than answers, but this much is certain: When autism strikes a family,
it changes more than the child. The divorce rate in families with autistic
children hovers at 75 percent. Parents can be wracked by guilt, frustration,
anger, denial and, always, questions about the future. They wonder: What sort
of life will my child have? What will he do when we are gone? A generation ago,
the answer was often bleak and depressing. Autism was scarcely recognized as a
disease then, and even more poorly understood. There were no effective
treatments. Parents were often unable to meet their child' s needs. The fate of
many autistic children was life in a psychiatric institutions. It' s easier
now. In the past decade, numerous autism organizations and support groups have
come into existence, among them the Doug Flutie Jr. Foundation for Autism,
created by San Diego Chargers quarterback Doug Flutie after his son, now 11,
was born with the disease. Public schools have responded -- in varying degrees
-- to the rise in autistic students as well. San Diego city schools, for
example, runs a well-regarded, if somewhat overtaxed, program of special
classes and services. "In the early 1990s, we had maybe 30 students in the
district identified as autistic," said Bobbi Kohrt, an autism specialist.
"Now there are maybe 500, 600." Autism
support and assistance groups Autism
Society of America/San Diego County chapter
(619) 595-3691
www.sandiegoautismsociety.org
North County chapter: (760) 479-1420
Provides information on autism and various approaches, treatment methods.Children'
s Hospital Developmental Evaluation Clinic
(858) 966-5817
Provides developmental or psychological assessments and recommendations.Children'
s Toddler School
Children' s Hospital
(858) 966-7707
Provides integrated toddler program for children with and without Autism
Spectrum Disorder. Families for Autism Intervention and Resources
(619) 461-2283
HOPE Infant Family Support Program
(760) 736-6344; (858) 292-3700
Provides early intervention for children to 3 years old in San Diego County. San
Diego Regional Service Center
(858) 576-2996
State-funded agency provides referral, evaluation, behavioral consultation and
advocacy services.
Exceptional Family Member Program
(619) 532-7291
Such programs help, though parents complain that they must sometimes fight for
services. "The hardest part of having an autistic child is first hearing
that you do and not knowing what it means," said Shirley Fett, mother of
two autistic boys. "But once you get over that initial shock and grieving,
the hardest thing becomes getting what you think your kids need. It' s a
constant effort." The effort is usually worth it. There is no cure for
autism, but some treatments are proving effective, particularly if started as
early as possible and based on behavior modification. These programs usually
focus on teaching behaviors through activities involving play-acting, mimicry
and visual aids. There is an emphasis on developing or reviving communication
skills. Stephen Adams, now 9 years old, has regained much of his language
ability, thanks in part to intense speech therapy sessions at UCSD and special
education programs in San Diego and elsewhere. "We knew Stephen could
talk, but he had lost his voice," said his mother. "Now it' s back
and getting stronger. He has a personality. He will look you in the eye again.
He' ll shake your hand." Savine and Jacob also have improved with behavior
intervention. Savine chats gaily with a visitor to her house about the Barbie
she received at Christmas; Jacob spots a camera and grins. Help wanted
If frustration exists in every autistic family so, too, does
hope, albeit tinged by desperation. Most autistic parents say they will try any
purported treatment and remedy, from dietary changes to cleansing the body of
certain toxins. "You can get frantic at times," said Fett. "What
do I do? How much can I do? Having a child with autism is very labor-intensive,
time-consuming and expensive. I think we' ve tried everything, a lot of it
without effect. Some parents get burned out but, for most of us, it just
becomes a way of life. I make phone calls every day about my boys, setting up
appointments, dealing with issues. We all reach a level we can handle." No
parent knows how much he or she can handle until reality strikes. It first
struck Donna Rasmussen when she noticed her son, Jake, at 9 months old, was not
like his 2-year-old sister. "He would watch the Disney movie ' Pinocchio'
over and over, laughing and giggling and flapping his arms," Rasmussen
said. "He loved to watch the credits, and when they were over, he would
scream until you started the movie again." At a year, Jake said
"mama" twice, "tasty" once, and then stopped speaking. Jake
didn' t play with toys, but he was mesmerized by chalk, which he carried
everywhere, including into bed and the bathtub. Everything seemed an ordeal and
complication. Jake would eat crunchy apples, but not Jell-O or ice cream. He
hated shopping trips to Ralphs, but tolerated Vons. Returning home by car
required following a particular route. Jake threw "about 70 tantrums a
day," his mother sighed. Rasmussen struggled to get Jake diagnosed.
"Nobody wanted to talk about autism," she said. It was just as bad
with family and friends. Some became uncomfortable around Jake; some distanced
themselves. Jake' s grandparents dismissed his behavior as merely strange.
"They' re still in denial," said Rasmussen. "They won' t talk
about the disease. It' s like they' re afraid they' ll offend somebody."
At 2-1/2 years old, Jake was diagnosed with autism and behavioral treatments
begun. Rasmussen does much of it herself, teaching Jake, now 6, with pictures
and much repetition. Life is better -- for everyone. "Jake' s much
improved," Rasmussen said. He' s in first grade. He' s talking again. He
reads and loves computer games. "Autistic kids aren' t stupid. Many have
normal intelligence. They just don' t have a way to express themselves, to let
go of their thoughts and feelings." Donna Rasmussen dreams the dreams of
mothers and fathers everywhere, that her children will have long, happy and
productive lives. At one time, she feared Jake would never learn to even eat
with a fork, but now Rasmussen thinks he might attend college some day, find a
job, create an independent life of his own. But there is doubt, too. For most
autistic families, uncertainty is a permanent shackle. Asked when she knew
things with Jake were going to be OK, Rasmussen paused, then said: "Maybe
the day after tomorrow."
http://www.uniontrib.com/news/science/20020112-9999_mz1c12autism.html
******************************
Parents seek respite from hard-to-manage child
DANIELLE CRONIN
A Bruce family nearing the end of their rope says the ACT
needs group housing for children with disabilities.
Karna and Julian O'Dea said their 12-year-old daughter Lucette was hard to
manage and needed full-time care in the group home sooner rather than later.
The active girl with autism was affectionate and loved but had become an
"insane housemaid", according to her parents.
She puts dirty dishes in the cupboards, moves pictures, throws the door mat,
dog chain and other household items over the fence, turns on water taps and
tries to make tea and toast, risking injuring herself or someone else.
Mrs O'Dea said the family home was like Pentridge prison, with locks on the
doors to keep Lucette out of the rooms and a high fence in the back yard to keep
her in.
She used to run away weekly, turning up once in a neighbour's kitchen rifling
through their fridge.
Lucette, who has the mental capacity of a two-year-old, was not destructive or
aggressive but needed constant supervision, comprehensive care and a
"chemical straight jacket" - medication which made her calmer and
easier to control.
"There are people with worse rows to hoe than us," Mrs O'Dea said.
"But it's constant . . . incredibly stressful."
Mr and Mrs O'Dea said they were not bleeding hearts and had no complaints about
disability programs which offered teen respite care, after school care and
classes at Belconnen warehouse.
But there was an unmet need for children with disabilities.
"We're getting close to the end of the rope," Mrs O'Dea said.
Mr O'Dea said his "lovely little girl" would flourish in a group home
environment with adult carers who could take breaks from her very active and
energetic behaviour.
"We can't look after her for the rest of our lives," he said.
"She'll have to go into a group home anyway . . . she needs to go in soon
to get used to it."
Mr and Mrs O'Dea also have a seven-year-old daughter Dominica and 16-month-old
son Malcolm who do not have autism but need their parents' attention.
They hoped their story would raise awareness about the plight of parents who
had children with disabilities. They also hoped it would prompt the ACT
Government to look into group housing for children aged under 16.
http://canberra.yourguide.com.au/detail.asp?class=news&subclass=local&category=general%20news&story_id=120224&y=2002&m=1
******************************
I Am Sam
Review
by Dean Kish, "The Soothsayer"
The conflicts and heartaches we as humans have to endure can break even the
strongest man. But what if that man is autistic and his heart is in play.
An autistic man named Sam (Sean Penn) takes a homeless woman in from streets.
After the homeless woman has Sam's child, she disappears and it's up to Sam to
care for his new daughter, Lucy. Sam's neighbor (Dianne Weist) helps with the
daughter when poor Sam has to go to work at Starbucks.
When Sam's daughter reaches 7 years old it seems that Lucy is becoming a lot
smarter than Sam is and strains begin to happen in their relationship. When
Lucy does what she can to stay with her dad society begins to see what is
happening and Child Services steps in. Will Sam lose Lucy? Can Sam's "pro
bono" lawyer (Michelle Pfeiffer) save father and daughter from the wrath
of the law?
I Am Sam is as hard to watch as it is to write about. As the film
progresses you are constantly drilled with debate on what is best for these
displaced souls. The reason it is so gut-wrenching and emotional to watch is
because of the performance of Sean Penn. That performance is so flawless that
you become emotionally involved with this guy. You adore his daughter and how
these two precious people adore each other.
I Am Sam is a movie that all parents must see because it has a piece of
parental instinct for each of us as we raise our children. There is so much
here that we must take to heart when raising children.
If Sean Penn gets nominated for this film for an Oscar look for him as a
shoe-in to win. He deserves it. That performance dwarfs even Dustin Hoffman's
autistic Raymond in "Rain Man". There is a cliché that an actor has
to play someone disabled to win an Oscar but this situation is far from anything
of that nature.
I liked Michelle Pfeiffer in this film as well. Her role is so restrained that
emotion doesn't pour out like Penn's but she does show how far she has come in
career. I also liked the chemistry between the two leads.
"Sam" is hard to sit through but definitely worth the journey if you
are an aspiring parent or a parent now.
(4 of 5) So Says the Soothsayer.
E-mail
Dean Kish at dkish@comingsoon.net
Discuss
"I Am Sam" in the Forums
Check out more info
on this film
http://www.comingsoon.net/reviews/iamsam.php
******************************
Critics of practice say it's dangerous and prone
to misuse
BY ROBYNN TYSVER
COPYRIGHT 2002 OMAHA WORLD-HERALD
KEARNEY, Neb. - Typically three or four times a day, juvenile delinquents
physically restrain other juvenile delinquents at the youth center here. More
than 1,300 such staff-sanctioned incidents, which officials call
"takedowns" and the youths call "slammings," were reported
last fiscal year. That's an average of about 3.7 a day. "They happen
everywhere. You can be eating and it can happen. Even at church," said
Timothy "LaMar" Washington, an 18-year-old who spent eight months in
the Kearney Youth Rehabilitation Treatment Center last year. "Most of them
were like people getting into each others' faces. Somebody threw a ball at
someone - I've seen someone get slammed for that," the Lincoln teen said.
The Kearney center for boys might be the only such juvenile detention center in
the nation that allows boys to physically restrain out-of-control boys.
Almost every other institution - if not every one - has barred the practice as
too dangerous and too prone to misuse by juveniles and staff. The takedowns
occur when an adult staff member or some of the youths themselves judge a boy
to be a danger to himself or others. Even with close monitoring, abuses can
happen. Kids can "sucker punch" other kids and manipulate the system
to settle a score, said John Handy, program director at the Minnesota
Correctional Facility in Red Wing. The Red Wing center abandoned the practice
several years ago. "You don't want to put a resident in a position where
he has a level of authority over other residents," Handy said. "It
can kind of look good - I've seen it - but what's really happening is not
good." He and other juvenile experts said they know of no other
correctional facility that allows such takedowns. The state acknowledges that
Kearney's takedown policy needs to be reviewed, said Dawn Swanson,
co-administrator of the Child Protection and Safety Division with the Nebraska
Health and Human Services System. The state also is concerned about how many
takedowns occur, Swanson said. "The numbers (of takedowns) we're having is
definitely, seems to be, high," Swanson said. But it is important, she
said, to remember that staff members supervise all takedowns. And there have
been few reports of injuries. Kearney reported five injuries during takedowns
over the last two years. Swanson said low staffing is a key reason the
boy-upon-boy takedowns and the positive peer program continue to be used. With
a limited budget, the center uses peer groups to help maintain order. The
staff-to-youth ratio is 2 to 30 in the evening hours and 1 to 30 at night. This
is markedly low compared with other states. In a similar institution in North
Dakota, the staff ratio is 1 to 12 in the evening hours and 1 to 15 at night.
"Given the overcrowding in the facility, it is a way that they have used
to promote safety and prevent running," Swanson said. Youth-on-youth
takedowns are prohibited in Nebraska's privately owned group homes and other
residential programs, and the practice is not condoned at the state center for
juvenile girls in Geneva. There is another big difference between takedowns at
Kearney and elsewhere. In other juvenile facilities, the adult staff members
are required to take classes, which typically last eight hours, to learn the
proper way to de-escalate a confrontation and to restrain a child. In Kearney,
youths get a manual that instructs them about takedowns. The rest they learn
from experience and from staff members, who frequently advise the boys to be
careful. "They just make sure you don't put any pressure on their joints.
They say, 'Get off his knees,'" Washington said. Swanson said she is
reviewing the center's training procedure. She believes a more formal training
process might be in order. A 1985 instructional book, "Positive Peer
Culture," approves of boy-upon-boy takedowns as a "last resort."
"Physical containment must be limited to only last resort and if possible
entirely eliminated through training of staff and group in nonphysical forms of
help and support," the book states. Takedowns never were intended to be
used frequently, said Larry Brendtro, co-author of the book. The program relies
upon children to help other children identify and work on their problems.
Washington said there is one good thing about the boy-upon-boy takedowns. They
teach you the value of the "buddy system." "Let's say I have a
grudge against you," Washington explained. "Me and my buddies can
bump into you and then slam you to the ground, saying you tried to throw a
punch."
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=276003
******************************
Accurate diagnosis is key but can be elusive
BY JEREMY OLSON
WORLD-HERALD STAFF WRITER
ALLIANCE, Neb. - Will clawed, bit, hissed, yelled and grappled with his parents
during his mania.
An accurate diagnosis gives a mentally ill child the best chance at
proper treatment and effective drug prescriptions. One day's medications for a
schizophrenic child can total 16 pills.
Baby sitters would come over only if his parents could return home within
seconds. And all before he was 8. Kathy figured she was either the world's
worst mom or her son had serious problems. A psychologist saw Will's puffy eyes
and decided he just had a bad allergy. A physician said the symptoms were
similar to Tourette's syndrome, a neurological disorder, and prescribed
medicine. A neurologist tested Will for epilepsy. Nothing worked. At the height
of her stress, she toyed with consulting an exorcist. "They were all so
baffled out here. I used to say, 'Come on, he can't be that unique,'" she
said. "I wanted a diagnosis. To me, it was very important ... so that I
didn't feel that it was just me and that my husband and I raised this
monster." Kathy noticed problems when her son was 5. By the time he was
diagnosed correctly with bipolar disorder, Will was 11. Her story and others collected
by The World-Herald demonstrate one truth about diagnosing mental
illness in children: Before even the brightest specialists get it right, they
often get it wrong. And their errors can have consequences. Factors
contributing to errors include the shortage of specialists, the lack of
consultation and coordination among psychiatric professionals, and the lack of
training among family doctors. An accurate diagnosis and proper treatment give
a mentally ill child the best chance at a stable childhood. "It
could really make a difference in how many kids end up with problems like
dropping out of school, getting into legal trouble or abusing alcohol and
drugs," said Dr. Jane Dahlke, a child psychiatrist in Omaha. A mistaken
diagnosis can delay appropriate treatment - and even harm children if they are
given powerful psychotropic medications they don't need. Children who appear to
have attention deficit hyperactivity disorder might actually have bipolar
disorder or both. Yet drugs commonly used to treat ADHD might fuel the
dangerous manic episodes of bipolar disorder. Of more than 50 families who
discussed the issue for this series, most reported that the initial diagnosis
for their child was later changed. Doctors gave one youth nearly a dozen
diagnoses in three years. A larger margin of error is expected in a field that
lacks X-rays, blood tests and other diagnostic tools. That margin is even wider
when diagnosing children, whose mental and emotional states change radically as
they mature. In children, one mental disorder can evolve into another. Ethical
concerns about using children in clinical tests have slowed research into how
mental disorders affect young minds. And some specialists hesitate to make a
specific diagnosis because the label can taint school or social relationships.
Parents, educators, child-care providers and others frequently miss or resist
the early signs of trouble. When they do see problems, parents talk first with
their family doctor or pediatrician. These family doctors, knowing that the few
specialists are busy or far away, often take on responsibilities for which they
aren't adequately trained. Fewer than one in 10 physicians answering a
World-Herald survey had more than the basic, required psychiatric training. Yet
five in 10 reported frequently or occasionally prescribing drugs or providing
care that a psychiatric specialist should. "We're all practicing a little
more psychiatry than we feel comfortable with," said pediatrician Janie
Mikuls of Omaha. Nor do pediatricians typically have time to detect the first
signs of psychological problems. The average office visit lasts 15 minutes or
less, with 90 seconds of discussion about mental health. Complete mental-health
assessments, which increase the likelihood of an accurate diagnosis, can take
several hours spread out over days or weeks. In the past, an assessment would
produce a couple of paragraphs that therapists would use as the basis for
treatment. When psychiatrists shifted in the 1970s and 1980s from the
therapy-driven Freudian approach to a more biological approach, they began
relying more on specific diagnoses. The system, cataloged in a manual published
by the American Psychiatric Association, has flaws: Its definitions sometimes
overlap or don't account for unique circumstances. The exact name of a disorder
is less important to psychiatrists than a keen understanding of a patient's
symptoms. But the name is becoming increasingly important in determining
whether an insurance company pays for treatment. Some psychiatrists acknowledge
diagnosing a specific disorder in borderline cases to ensure coverage for their
patients. Dr. Elizabeth Berger, a child psychiatrist in Philadelphia and a
noted author on child behavior, said that in an era when the goal is to treat
more of the mentally ill at home, rather than in institutions, it's important
to work with a clear diagnosis. "You can't fix it unless you know what it
is you are fixing," Berger said. Kathy views her son's bipolar diagnosis
as a turning point. With weekly therapy sessions, his need for mood-stabilizing
drugs gradually subsided, as did his violent outbursts. Kathy can explain
bipolar disorder to Will's teachers as well, so they know what to expect. The
15-year-old high school freshman has a structured support system at school,
where he maintains a B average. Teachers know Will should leave the classroom
and find his special resource teacher when needed. At home, he still struggles
through the manic and depressive cycles of his illness, but he has developed
coping mechanisms. Instead of tearing up the house or confronting his parents,
he slams the door to his room. He is off medication, and his parents haven't
had to contain him physically in years. "He wasn't doing something because
he was naughty," Kathy said. "There was something behind his actions.
There was a medical condition."
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=280593
******************************
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