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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Wednesday January 16, 2002
INDEX:
* Joe Mantegna rules
in favor of autism funding
* NAMI Calls 'A Beautiful Mind' Historic and Authentic: Reveals
Truths
About Mental Illness and Modern Treatment
* Special school saved family from collapse
* Shortage of specialists delays treatment until problems build
* Taking down a peer: Therapy that works?
******************************
Joe Mantegna rules in favor of autism funding
By John Morgan,
Spotlight Health With medical adviser Stephen A. Shoop, M.D.
Joe Mantegna's 14-year-old daughter is autistic.
The MIND Institute
The
West Wing's Brad Whitford lobbies for autism
On the new CBS series First Monday,
veteran actor Joe Mantegna plays a Supreme Court justice whose pivotal vote is
key in an evenly divided bench. But when it comes to his first daughter Mia,
Mantegna needs little time to deliberate. Mia wins on the merits."She's
strong and beautiful and she loves doing homework," says Mantegna, who won
a Tony Award for his role in Glengarry Glen Ross. "She is the
additional glue in our family. And we like to joke that she's a cat in a world
of dogs."Perhaps even more so than most 14-year olds because Mia is
autistic.Autism is a neurodevelopmental disorder that affects early brain development,
often causing communication difficulties and problems with social interactions.
Because the degree of these challenges varies greatly from individual to
individual, autism is defined as a spectrum disorder — a group of disorders
with similar features."Mia is high functioning and attends a mainstream
regular classroom," says Mantegna, 54. "That was a big decision
because we had to weigh the benefits of a regular class versus special
education. It was very intuitive — it felt right so we did it."And
according to Mantegna, Mia has blossomed. "She's doing really well and I
think the process of inclusion helps everyone, not just Mia."Mantegna says
he wasn't worried about kids teasing Mia. "I don't necessarily believe
kids are cruel," says Mantegna, who has gone to Mia's class and given
talks about autism. "I think when you talk to the kids and explain autism
to them they rise to the occasion. God bless those kids who are best friends to
an autistic child."But things didn't always look so bright for Mantegna
and his wife Arlene.First born
Mia Mantegna was born three months premature after her umbilical cord became
infected. She weighed only one pound 13 ounces at birth and spent the next
three months in intensive care. Although the Mantegnas didn't know it, low
birth weight can put a newborn at greater risk for autism."We're just
lucky she's alive," says Mantegna. "Twenty years ago she wouldn't
have lived. Mia has an incredible will."The Mantegnas began to realize Mia
might be autistic when they noticed her speech development was lagging behind.
Parents typically discover this language delay around age two or three when
most infants begin verbalizing more.Mantegna remembers lots of tests being run
to rule out other causes, including the possibility that Mia might be deaf. But
Mia wasn't hearing impaired. Instead she had some of the classic symptoms of
autism, including:
Delayed social interaction — the child fails to initiate or acknowledge
interpersonal communications. Often this is as simple as not making eye
contact.
Sensory processing abnormalities — The child has a heightened (or decreased)
sensitivity involving as many as all five senses. In Mia's case, her hearing
was hypersensitive, and she would react strongly to music until auditory
therapy helped her adjust. "Now she loves music and has perfect
pitch," adds Mantegna.
Repetitive routines — Rocking back and forth, hand movements or other
repetitious motions. According to the National Institute of Health (NIH), Mia
is one of an estimated 400,000 people with autism. Approximately one out of
every 500 people are is afflicted, making autism the third most common
developmental disability.And the disorder may be even more prevalent than
previously thought."The true number of those with autism is far higher
than we thought," reports Dr. David Amaral, Research Director of the
Medical Investigation of Neurodevelopmental Disorders (MIND) Institute at the
University of California, Davis. "We now believe the figure may be closer
to one out of every 150 people. And this increase is not simply attributable to
better diagnoses — there is something out there causing this
increase."While scientists have yet to identify the causes of autism or
provide a cure, substantial advances have been made in the past five years in
the study of autism."This is really largely due to parent advocacy,"
says Amaral. "Cure Autism Now (CAN) has been very important in leading
funding initiatives and genetic research. And the National Alliance for Autism
Research (NAAR) has championed the need for postmortem research with their
tissue program.""The awareness levels are increasing," says
Mantegna. "Children diagnosed today have so many resources compared to ten
years ago. It is really important to do the research. Figure out what you can live
with and make it work for you and your child."And more research
breakthroughs are appearing on the horizon.
Moving forward
Last November CAN and NAAR teamed up with the MIND Institute to sponsor the
first international meeting of autism research. "Autism is so incredibly
complex that it is unlikely that one single lab will solve it," says
Amaral. "It's a huge information processing problem to understand all the
factors influencing autism. That's why it was so important to gather together our
research community."Over 600 scientists attended the San Diego conference
and presented over 225 papers. But still Amaral laments that the scientific
knowledge of autism is still meager."Right now we're on a huge fishing
expedition looking for causes," says Amaral. "Researchers have looked
at over a 100,000 brains for Alzheimer's. In autism, we've looked at between
55-60 brains. It's shocking. We need more funding. For any topic in autism, we
need more research and hard data."Amaral is pleased that the NIH is joining
the funding effort and "mounting a full court press" by creating
centers for excellence in autism."We exploring some very exciting areas of
research — including the effects of mercury and PCBs and autism," reports
Amaral. "There are probably 5-20 genes influencing autism as well as
environmental factors. We're very keen on developing a bio-marker to detect
infants who may be susceptible to autism and perhaps some day prevent it from
developing."In the meantime, early diagnosis and intervention are critical.
Research indicates that treating infants as young as 18 months provides the
best hope."I credit Mia and my wife Arlene for my daughter's success
because every day can be a challenge," says Mantegna. "Arlene is so
involved in Mia's life. It's that incredible bond between mother and child.
We're all very lucky."Mantegna is especially proud of Mia's younger sister
Gina. "I can't tell you how much I admire her," says Mantegna. "
She is loving and compassionate — an old soul who embraces all. And I think a lot
of that comes from her life with her sister.""It may sound real
cliché, but I do believe in a divine power and you're only given what you can
handle," adds Mantegna.And Mantegna seems to be handling his own series
with great excitement."I admit that I've always avoided series TV — partly
because I enjoyed the variety of movies and stage work and partly because of my
daughter. Traveling is less enjoyable now and I want to be more involved in my
daughters' lives. First Monday was the right thing at the right time.
Just like the birth of my daughters."First Monday premieres Tuesday
January 15 at 9PM ET/PT
http://www.usatoday.com/news/healthscience/hsphoto.htm
******************************
NAMI Calls 'A Beautiful Mind' Historic and
Authentic: Reveals Truths About Mental Illness and Modern Treatment
ARLINGTON, Va., Jan. 15 /PRNewswire/ -- Oscar nominations have yet to
beannounced, but the National Alliance for the Mentally Ill (NAMI) already
iscalling A Beautiful Mind a winner."Our members are the movie's toughest
critics," said NAMI director RichardBirkel. "They have experienced
mental illness first-hand. A Beautiful Mindrepresents a breakthrough of
historic proportions. It is authentic. It speaksmany
truths.""Director Ron Howard, actor Russell Crowe and screenwriter
Akiva Goldsmandeserve more than Oscars," Birkel said. "They deserve a
prize for bridging thegap between entertainment and public education about
schizophrenia."Xavier Amador, Ph.D., director of NAMI's Center on
Education, Research &Practice said: "The experience of having
schizophrenia is nearly impossiblefor the average person to grasp. The film
takes you inside the mind of someonebattling to separate reality from delusion.
It is no small feat. The impactgoes far beyond what the filmmakers ever could
imagine."Amador listed key truths from the movie:* Dignity and
respect optimize recovery.* Many people with schizophrenia suffer from
poor insight, oranosognosia, a symptom that delays getting help or keeps them
out oftreatment.* Medication plays a vital role and discontinuing
medication involvesmajor risks. In the movie, Nobel Prize winner John Nash's
delusionsreturn when he stops taking medication. Later, newer medications
helphim, even though his hallucinations do not go away entirely.* Faith
and hope are factors for recovery. Alicia Nash (JenniferConnelly) in the movie
proclaims: "I need to believe that somethingextraordinary is
possible." For many families today, extraordinarythings happen when they
have access to state-of-the-art care. Hope alsoendures that science will find a
cure for schizophrenia.* Community reintegration is important: i.e. what
Nash (Russell Crowe) inthe movie calls "fitting in, being part of a
community, a certain levelof attachment to familiar places" in asking for
permission to "hangaround" Princeton University.* Supports and
tolerance, particularly by employers such as Princeton,help recovery and can
utilize the talents of people with mentalillness.* Cognitive therapy
strategies, or what Nash calls "a diet of the mind,"help to
discipline thought processes to ignore hallucinations and
not"indulge" certain emotions."We have made monumental advances
in the last two decades, but state-of-the-art treatments and services are not
as widely available as they shouldbe." Amador said. "If they were,
there would be many more 'beautiful minds'freed from prisons created by
untreated mental illness and stigma."One scene in the movie has been
controversial. Lying on a hospital bed inrestraints in the 1950's, Nash receives
insulin therapy, resulting in violentconvulsions. Some viewers mistakenly
believe the procedure to reflect moderntreatment or electroshock therapy.
"The scene is disturbing," Amador said,"but it is not the
reality of treatment today."
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/01-15-2002/0001648672&EDATE=
******************************
Special school saved family from collapse
BY LAURA PEEK
EOIN BORG-NEAL kicks and punches his mother, wrecks his brothers’ toys and sets
fires in his house. The 12-year-old has severe autism: he cannot speak, make
eye contact or read facial expressions. The severity of his condition means
that violence is often the only way he can show he is upset. This time last
year his parents, Peter and Moira, were at breaking point, unable to cope with
his behaviour. Eoin, whose autism was diagnosed when he was three, had grown so
big that his mother could no longer restrain him. His three younger brothers were
wary of him because he attacked them and broke their toys, and other children
stopped inviting him to their birthday parties. Eoin’s early development had
shown few signs of autism. Mr Borg-Neal said: “He looked like a Walt Disney
creation, with big eyes, curly hair and a ready smile.” But when he reached 18
months, Eoin’s behaviour began to worry his parents. By the time he was two and
still had no speech, the concern started to heighten and Eoin was referred to a
paediatrician; autism was diagnosed at a specialist clinic. The last straw came
when he attacked his baby brother as he slept in his cot, pulling his hair and
making him cry. “He was almost as big as my wife,” Mr Borg-Neal, 40, said. “He
attacked the baby when my wife was pregnant with our fourth child and that
really worried us. He also set fire to the house, caused floods by blocking
toilets, tore down curtains and stripped off wallpaper. At night he would often
smear the walls with his own faeces. “By January of 2001 it was intolerable. The
family was in danger of coming apart at the seams. To make things worse, I lost
my job that month.” Salvation for the Borg-Neals came in the form of the
National Autistic Society (NAS), which placed Eoin in one of its specialist
boarding schools. The Times Christmas Appeal is raising money for the NAS to
fund such schools, which provide vital care for children with autism and much
needed respite for their families. An estimated one person in every 100 has
autism: that is more than half a million people in Britain. Since Eoin started
at the Robert Ogden School in South Yorkshire, his parents have been able to
rebuild their lives. “It saved the family from collapse,” Mr Borg-Neal said. “A
year on, we feel we have come out of the other side of a very difficult battle.
“The school has superb facilities, such as a cycle track and an adventure
playground. His days are planned and action-packed. He even went rock-climbing
recently. “At home,” Mr Borg-Neal said, “I have started a new restaurant
business, and we are looking forward to the future with renewed optimism.”
Although life is still difficult for the family when Eoin comes home, they
credit the NAS with transforming their lives. Mr Borg-Neal said: “We have just
had Eoin home for a couple of weeks’ holiday. It hasn’t been easy. He smashed
the car windscreen with his boot, he wrecked his newly decorated room and
attacked members of the family. “But we have coped and we now have the energy
to do lots of positive things with Eoin, such as hill-walking, mountain-biking
and swimming.” The couple now expect Eoin to live in an institution for the
rest of his life. “One of the hardest things about having an autistic child is
worrying what will happen to them when you are dead. But the NAS has services
that take people through their whole lives. “However, there are still not
enough of these, which is why they need money to expand. It is impossible to
comprehend how we would have coped without the NAS.”
http://www.thetimes.co.uk/article/0,,2-2002021294,00.html
******************************
Shortage of specialists delays treatment until
problems build
BY JEREMY OLSON
WORLD-HERALD STAFF WRITER
Nebraska has barely enough mental-health specialists to help children who are
suicidal or in crisis, and certainly not enough to identify and treat problems
in children early. Because of that, behavioral disorders build up, leaving
children at greater risk of committing crimes, disrupting schools or hurting
themselves. The shortage of these specialists - a particular problem in
Nebraska and several other rural states - is one reason the U.S. surgeon
general estimates that four of five children with an impairing mental illness
don't receive care from mental-health specialists. "Early intervention is
the best treatment," said Dr. Wun Jung Kim, an Ohio child psychiatrist and
the co-chairman of a national task force on the issue. "If you miss that
opportunity, you have more complications that are harder to treat down the
road." The problem has drawn the recent attention of Gov. Mike Johanns,
the Legislature, the Nebraska Medical Association and the University of
Nebraska Medical Center. All have ample data proving the disparity, but are
only starting to pursue solutions. Nebraska has the 12th-lowest ratio in the
nation of child psychiatrists per child. Eighty-eight of 93 counties report
shortages of psychiatrists, psychologists and other professionals.
Pediatricians are the only medical professionals in more demand: 89 counties
report a need for more. While the distance between towns in rural stretches
magnifies the lack of specialists, the problem also affects the most populated
areas. Consider the case of Anita, a 15-year-old Omaha girl who talked to the
voices she heard, threatened relatives with a knife and ran away five times. She
needed more help than her therapist could offer. But the earliest appointment
that could be made with a child psychiatrist was three weeks away. Anita lasted
a week and a half before trying to stab herself. A cousin grabbed her wrist and
forced her to drop the 4-inch blade. Police took her, in handcuffs, to a
psychiatric ward. Now consider that many Nebraska children wait up to four
times longer than that to see a child psychiatrist. The average wait is closer
to two months. Nationally, about 4,000 child psychiatrists are needed to meet
the demand, the greatest shortage of any medical specialty. Eighteen child
psychiatrists work in Nebraska and seven work in Iowa communities west of Des
Moines, but fewer than half focus on full-time private practice. The rest have
scaled back their hours, conduct research, teach or manage hospital wards or
treatment centers. Iowa has a better ratio of child psychiatrists to children,
ranking 32nd among the states, but it, too, is below the national average. Too
few medical students are in the pipeline to alleviate the shortage quickly.
Nationally, one in five child psychiatry residencies is vacant. These
doctor-in-training vacancies are even more glaring, given that waning federal
funding in the 1990s led many medical schools to reduce or eliminate child
psychiatry programs. Locally, the three residencies in a combined University of
Nebraska-Creighton University program are filled. A shortage of applicants and
a lack of revenues from clinical operations make expansion impractical, said
Dr. David Folks, the NU Medical Center's chairman of psychiatry. He feels
fortunate considering that psychiatry schools in Michigan and other states are
planning to close. Students steer away from psychiatry, Kim said, because it
requires two to three more years of costly schooling. They also hear war
stories from psychiatrists who make half as much money as they did 10 years ago
and don't like the added paperwork and demands of managed care. Kim, an
associate professor at the Medical College of Ohio in Toledo, said one way to
address the ebbing interest is to provide financial incentives to attract more
students and to restore child psychiatry residencies. His task force, organized
by the American Academy of Child and Adolescent Psychiatrists, wants Medicare
to fully reimburse medical schools for residencies in such specialty areas, as
it does for general medical residencies. A bill in the U.S. House would
authorize the change, although it is a long shot to be enacted. The majority of
the 46 family doctors and pediatricians in Nebraska who responded to a
World-Herald questionnaire reported two- and three-month waits when referring
patients to psychiatric specialists. Not all mentally ill children need a
psychiatrist. The medical specialists generally become involved if a therapist
or psychologist recommends it. But other mental health specialists are in short
supply, as well. It took half the year to find an additional pediatric
psychologist to treat a growing patient load last year at one of Nebraska's
largest mental health practices, the Children's Family Support Center in Omaha.
In the meantime, new patients sat on a waiting list. Several Nebraska groups
are trying to address the lack of specialists. The University of Nebraska
Medical Center wants to improve mental-health training for family practice
doctors. Administrators are exploring ways to increase the number of
mental-health specialists. A group of Omaha mental-health-care providers,
anticipating that the shortage will get worse, is collaborating on recruitment.
The group found that 40 percent of the state's private-practice psychiatrists
are older than 55 and nearing retirement.
World-Herald staff writer Joe Kolman contributed to this report.
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=280592
******************************
Taking down a peer: Therapy that works?
BY ROBYNN TYSVER
COPYRIGHT 2002 OMAHA WORLD-HERALD
RELATED STORY
Critics
of practice say it's dangerous and prone to misuse 
KEARNEY, Neb. - When Shirley Ballinger visited her teen-age son at the Kearney
center for delinquent boys, she didn't get to talk with staff members. It was
fellow delinquents - her son's "peer group" - who reported on his
condition. The same delinquents who helped to decide when he would go home. The
very same who were responsible for "slamming" her son - physically
restraining him when he got out of control, as adult staffers stood
watch. There were 1,344 such takedowns, or physical restraints, in the 12 months
that ended June 30. "They hold your arms and legs out, while you're on
your back. They say they have the right to take you down as long as they don't
break anything," said Timothy "LaMar" Washington, Ballinger's
18-year-old son.
LaMar Washington,18, liked some aspects of his eight-month
stay at the Kearney Youth Rehabilitation Treatment Center last year, and didn't
like other aspects.
The peer group is everything to a child at Kearney. It is also the primary
therapy tool used at the state-run youth rehabilitation center, even for those
with serious mental illnesses. Depending on your viewpoint, the program is
either an effective way to teach positive social skills and maintain
institutional order, or it is a state-sanctioned version of "Lord of the
Flies," where the toughest, smartest kids are in control. Washington said
he was "slammed" - the slang term used in Kearney - seven times during
his eight months in Kearney last year. He said he also was forced to tell the
group his "life story." In the end, he said, he learned to survive,
often telling the youths what they wanted to hear. He respected some of their
opinions but questioned the value of fellow delinquents instructing him on how
to behave. "We all came here because we had problems for years. Why would
we be able to solve each others' problems in a couple of months?"
Washington asked.
To See the full story:
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=275987
******************************
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