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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Saturday December 8, 2001
INDEX:
* Controversial MMR-autism
investigator resigns from research post
* ABC of the upper gastrointestinal tract
* Mother finds mission as autism advocate
* Some important stories are getting buried by war news
* Scholar offers poignant first-person account of overcoming autism
* COLUMN: The wrong example
* Autistic Children at Heightened Risk of Epilepsy
* Surgeon general says doctors, dentists often refuse to treat the
retarded
******************************
Controversial
MMR-autism investigator resigns from research post
The UK researcher who controversially proposed a link between measles, mumps,
and rubella (MMR) vaccination and inflammatory bowel disease/autism has stepped
down from his post. Andrew Wakefield left the Royal Free and University College
Medical School, London, on Nov 30. "The hierarchy of the medical school
decided it did not wish the work to continue there", Wakefield told The
Lancet. The "MMR-autism controversy" started at a press
conference in 1998, when Wakefield argued that because of uncertainty about its
safety, the MMR vaccine should be withdrawn. This claim--which was not shared
by his co-workers--was made on the grounds that there was an association
between autism and intestinal abnormalities in 12 children and a
possible relation with MMR vaccination (Lancet 1998; 351: 637-41).
Criticisms of the study and Wakefield's interpretation of the data have
followed. A different research group from Wakefield's institution led by Brent
Taylor published
evidence contradicting the alleged association (Lancet 1999; 353:
2026-29). Last week, University College London stated: "Dr Wakefield's
research was no longer in line with the department of medicine's research
strategy and he left the university by mutual agreement." Wakefield
claimed that the decisions made about his work were rooted in politics rather
than science. He told The Lancet that he had asked whether those who had
made the decision regarding whether to support the continuation of his research
had read any of the work he and colleagues had published. "I can only
assume it [the research] was politically incorrect", he said. The work,
however, will continue. Wakefield told The Lancet that he has come to an
agreement with the medical school that he will have access to data and samples,
and will continue the MMR research as an independent investigator in
collaboration with ex-colleagues at the medical school and at other research
centres over the next 2 years. Wakefield stated that his priority remains the
wellbeing of children whom he believes have been affected by the vaccine.
"They mustn't be put aside because they represent something uncomfortable
for medicine", he said. "I am not anti-vaccine, and still think
children should be vaccinated, but not with this formulation", he added. A
representative of University College told The Lancet: "Dr Wakefield
left his post by mutual agreement and will have received a generous financial
package." Sarah Ramsay
http://www.thelancet.com/journal/journal.isa
******************************
ABC of the upper gastrointestinal tract
Anorexia, nausea,
vomiting, and pain
R C Spiller. With the steady decline in diseases associated with Helicobacter
pylori infection, the commonest diagnosis, both in general practice and
hospital outpatients, is increasingly likely to be functional dyspepsia, a
condition that is ill understood and for which management is poorly defined.
To Read Full Story: http://bmj.com/cgi/content/full/323/7325/1354
******************************
Mother finds mission as autism advocate
By GLENN MILLER, gmiller@news-press.com
Heather Harris received the news about her son’s autism when James Patrick was
2 1/2. “They said he’d probably be mentally retarded and there was not a good
chance of him speaking and not to expect a lot,” Harris said. 
FORT LAUDERDALE
CARRIER: Heather Harris, left, sits with her
two sons, Hank, 1, center, and James Patrick, 7, at their North Fort Myers
home. She will carry the Olympic torch along 4th Street in Fort Lauderdale on
Saturday. TODD STUBING/news-press.com Click on image to enlarge.
“I completely refused to acknowledge that as true. I went around the area and
found a lot of people in the area who had done a lot with autism already. And
so I found people who had been there and pooled all the information.” James Patrick
is now 7 and a first-grader at Hancock Creek Elementary School. Harris’ friend
Pam Few nominated her to carry the Olympic torch. Harris, 32, will tote the
torch at 11:24 a.m. Saturday in Fort Lauderdale. Her husband, James, 31, will
be there. For Few, Harris’ refusal to allow autism to define James Patrick is
inspirational. “It was really difficult to accept it and for her to deal with
it but they did,” Few said. “She’s worked quite extensively with the autism
society. She’s gone to Tallahassee for legislation to get autism educators into
schools. It’s been really hard for her to have a child that is hard to
communicate with. With her constant diligence and working for autism and the
plight of autistics, James Patrick has just blossomed. He’s in regular
classrooms. He’s communicative. You can talk to him and he responds. “A lot of
autistic children don’t. They don’t have any depth or dimension to their
thought process or communicative abilities. James Patrick has blossomed because
of Heather’s diligence and working with him. She’s an amazing person.” Harris
is a voracious reader of novels, biographies and histories. “This girl is
constantly cheerful,” Few said. “She’s amazing. She is the most thoughtful
person I’ve ever met and the most giving person I’ve ever met. She never dwells
on the negative. I think she’s a pillar of what the torchbearer should stand
for.” Harris and her husband are both Navy veterans. They met when they were
stationed in the Philippines. They also have a 1 1/2-year-old son, Hank. Harris
is stunned she’ll carry the torch. “I’m not worthy,” she said. She believes the
honor is more about others. “That I have a wonderful family and friends,”
Harris. “I’ve been lucky to pick really good people to be around. I’m honored
and surprised.”
Copyright 2001, The News-Press. Use of this site indicates your agreement to
the Terms of Service
(updated 08/09/01
http://www.news-press.com/news/today/011207torchharris.html
******************************
Some important stories are getting buried by war
news
Dan Fost Wednesday, December 5, 2001
Every now and then, if he or she is lucky, a reporter gets
on a story that feels so important the world needs to know about it. For Steve
Silberman, that story was his expose of what might be an epidemic of autism in
Silicon Valley -- an epidemic which could also turn up in other tech capitals
and which is only now attracting the attention of health investigators. For
Silberman, a Wired contributing editor, the timing for his big scoop couldn't
have been worse: His story appears in the December issue. With war dominating
America's print and broadcast news, such enterprising reporting is struggling
to find an audience. As if to drive home the point of where the media are
focusing attention, Silberman's story rates only a line on the cover, most of
which is devoted to a special package: "The Future of War Is Here."
"I honestly believe (the autism piece) is the most important story I've
ever written," Silberman said. "It's a local story with major social
resonances for everyone. . . . and I'm worried that with anthrax and planes
crashing in New York City, no one's going to hear about it." Silberman has
good reason to worry. Wired's director of public relations, Robert Pini, tried
selling his story to national and Silicon Valley outlets at the end of October,
when the issue came out. "The national outlets simply were focusing on war
stories," Pini said, while medical editors in Silicon Valley "were
swamped with anthrax stories." I should note that I was among those who
passed on the story; even though I haven't written exclusively war-related
columns, I'm often uneasy about following another publication. So it's not a
sure thing that Silberman's story would have made it into other publications if
it had come out before Sept. 11. But there are plenty of other examples of
stories that aren't getting covered in the aftermath of the terrorist attacks.
Just ask Gary Condit, the subject of the last "mediathon," to use New
York Times columnist Frank Rich's term, who is only rarely in the papers these
days even though Chandra Levy remains missing.
To Read The Full Story:
http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/2001/12/05/BU223588.DTL&type=business
******************************
Scholar
offers poignant first-person account of overcoming autismBy Hope Green
Stephen Shore has spent his life
confounding other people's expectations. When he was a toddler, a psychologist
recommended that he be institutionalized after diagnosing him as
"psychotic with autistic tendencies." Fortunately Shore's mother
disregarded the advice, and his condition improved under her care.
Shore hopes his book inspires others with cognitive
disorders. Stephen Shore. Photo by Akihiro
Takamatsu
In elementary school Shore lagged far behind his
classmates academically, and his second-grade teacher said he'd never learn to
read. Yet a few years later he caught up in his subjects and began to excel in
school. Today he's pursuing a Ph.D. He once had trouble getting along socially.
Now, at 40, he has a wide circle of friends and has been married for 11 years.
Shore (SFA'92, SED'02) works with autistic children and adults at the School of
Education, where he expects to complete a doctorate in special education by
next May. He's on the board of the Asperger Syndrome Association of New
England.
Although he used to hide his disability, he's now eager to share his life
story, hoping it will inspire others with autistic disorders to achieve their
potential.
His first book, Beyond the Wall: Personal Experiences with Autism and Asperger
Syndrome (Autism Asperger Publishing Co., 2001) weaves personal narrative with
practical advice for educators and parents of autistic children, as well as for
autistic adults.
"My goal in writing this book," he says, "was to present the
auto-biography of a person diagnosed with autism and at the same time put it in
the context of the current literature."
While knowledge about autism has improved dramatically since Shore's 1960s
childhood in Newton, Mass., much of the public still has a distorted notion of
the condition. For many people it conjures either the image of a small child
rocking in a corner, or Raymond Babbitt, the autistic savant in the 1988 film
Rain Man, who solved complex mathematical problems in his head but was so lost
in his eccentric, private world that he couldn't function on his own.
Yet autism is not one narrow diagnosis, but a wide array of developmental
disorders ranging from severe autism to Asperger syndrome. The latter was named
for pediatrician Hans Asperger, who identified the condition in the 1940s.
"Currently, Asperger syndrome is considered to be at the high-functioning
end of the autism spectrum," Shore explains. "People with the
syndrome tend to be quite verbal, and with help, they're able to navigate the
challenges of education, employment, and relationships and lead a fulfilling
life."
Even so, Asperger syndrome does overlap with certain characteristics of autism,
in particular a misinterpretation of sensory input to the brain.
"The information we receive through the senses comes through distorted,
like a mistuned radio," Shore says. "We often don't pick up the
environmental cues that we need in order to develop typically."
At 18 months old Shore was hit with what he now calls the "autism
bomb." Until then a fairly typical baby, suddenly he became withdrawn, had
extraordinarily frequent tantrums, and developed habits such as banging his
head on his bedroom wall and spinning around with a finger in one ear. He also
stopped speaking and would not eat solid food again until the age of four. With
his nervous system on overdrive, he found haircuts excruciatingly painful and
often recoiled from touch -- phenomena he later outgrew.
His mother learned what she could about autism from consulting with
psychologists, and worked with him at home using music therapy and
cognitive-development exercises. She also sent him to a therapeutic nursery
school in Boston, which helped him regain his verbal skills. Gradually he moved
toward the less severe end of the autism spectrum, more closely fitting into
the Asperger category.
But elementary school, Shore recalls, "was a social and academic
disaster." He was bullied in kindergarten, where he felt compelled to make
strange repetitive sounds in an attempt to communicate with his peers instead
of using the words he uttered at home. In second grade, instead of watching the
teacher at the blackboard, he would sit at his desk and read astronomy books.
"They didn't take the books away because they didn't know what to do with
me," Shore says. "They left me to my own devices. I remember thinking
that second grade was an awful lot of empty space and that I was spending a lot
of time reading these astronomy books and copying diagrams. I wondered,
'Shouldn't I be learning math or reading or something else?' I didn't talk
about it with anybody."
Special interests are common for children with Asperger syndrome. Besides
astronomy, Shore was fascinated with watches, and at an early age could take
them apart and put all the gears back together again in working order.
Bicycles were another fixation: he could take one look at a bike as a stranger
rode by and recite the names of every one of its components, how much the
bicycle weighed, how much it cost, and in what country it was manufactured.
"One day I was doing one of these data dumps to my parents," he
recalls, "and my mother said, 'You know, you should really concentrate on
the person who's on the bicycle.'"
In retrospect, Shore believes his teachers could have used his special
interests to teach him to read and do arithmetic. In his work at SED, he uses
music as a tool for teaching communication skills. Sometimes he will even sing
questions to students, and they will sing back their answers. "We see a
lot of children with Asperger syndrome who have special interests -- it might
be math, it might be computers, it might be chess, but all of these provide
pathways by which to educate a child."
Shore's grades improved in middle and high school, where he also learned to
play several musical instruments. He thrived in college, double majoring in
business and music education at UMass-Amherst, where he found friends who
shared some of his many interests.
His early attempts at a career were a letdown, however. He took a job at an
accounting firm, but found that he couldn't fit into a corporate atmosphere.
Office politics, hidden agendas, and disingenuous conversation -- mere
annoyances to most people -- made him anxious. "People on the spectrum
usually sense there's something there, but that's about as far as it
goes," he explains. "That can be somewhat of a scary feeling, because
you don't know whether to believe what you sense when it clashes with what you
see or hear."
Shore's self-knowledge comes only in retrospect: by the time he went to college,
he figured he had completely outgrown autism, and while he sensed that he might
still have some cognitive problems, he ignored them. But in the early 1990s, he
was ready to take another look. While studying for a doctoral degree in music
at the School for the Arts, he was having trouble with a portion of a
qualifying exam, and his mental block vexed him. "It came to the point
where I wondered if something was haunting me from the past," he says.
Sufficiently curious, Shore went for a neuropsychological test and received a
diagnosis of a "learning disorder not otherwise specified with
characteristics consistent with childhood autism." His interest in autism
deepened, leading him to consult with Arnold Miller, a prominent developmental
psychologist who works with autistic children at a school in Jamaica Plain.
Miller encouraged him to write a book, and with the manuscript in hand, Shore
switched from the music program to SED.
Stephen Shore. Photo by Akihiro Takamatsu
In the course of his research, Shore began to recognize
his own residual Asperger traits. To this day he is disturbed by distracting
noises, has difficulty remembering faces, and rides his bicycle to avoid the
sensory overload of the subway. At parties, where unstructured mingling
troubles him, he engages in a specific activity such as playing the piano.
His disorder is not obvious to others, but if necessary he will reveal it to a
new acquaintance or employer. The issue of whether and when to disclose that
one is "on the spectrum" is something Shore addresses in his book,
and it's likely he will address the subject in more depth in future
publications.
Spreading a greater understanding of the autism spectrum, helping parents find
the right help for their children, and helping adults cope with its residual
effects are among Shore's chief goals. Experts in the field have high praise
for his efforts thus far. In a review of Beyond the Wall, Thomas Cottle, an SED
professor of education, writes, "The combination of pure storytelling and
thoughtful insight makes this book a major contribution to our understanding and
appreciation of these disorders.
Beyond the Wall humbles us and urges us to once again rethink the power of the
human brain and the human spirit."
******************************
COLUMN: The wrong example
Updated: Thu, Dec 06 12:00 PM EST
By Josh Plotnik
Cornell Daily Sun
Cornell U.
(U-WIRE) ITHACA, N.Y. -- For the past six days, the Middletown Township school
district in New Jersey has been closed. Approximately 1,000 teachers walked out
last Thursday, refusing to work. The teachers have been working without a
contract, but their main concern focuses on the school board's plan requiring
teachers to pay higher fees for their health insurance. What is causing such an
uproar is that most of the teachers in Middletown are still on strike, regardless
of the fact that a Superior Court Judge ordered them back to work immediately
last Thursday. The judge, since then, has been moving down the list of
teachers, alphabetically sentencing them to one-week jail terms for defying his
work orders. Teachers left the courtroom hugging their kids, crying, saying
they would stand up for what they believed in; they could not submit to any of
the judges' demands. At a time when we need teachers in the classrooms helping
kids to be strong, these teachers strike. At a time when many American kids are
lost as to what to do with their lives after Sept. 11, and how they should
continue to act, the Middletown teachers have walked out. Young people today
have even contemplated whether or not school is worth their trouble anymore.
After all, we are at war, soldiers are being killed in battle and teachers are
going to jail. One Middletown teacher told reporters that she was hurt; she
could not believe she was getting treated this way after all she had given to
the children. What hurts? The politics and inconsiderate nature of school board
members? Teachers' issues are important, but these Middletown teachers are
missing the point. How dare they put blame on the children? It sounds like some
of them are implying that they have been extremely dedicated to the students
but are only getting ill-treatment in return. I'm sorry, I thought seeing
students learn as they look up to you as their idol was reward enough. The
teachers and their families have been contending that they are highly educated
people standing up for what they believe in and they are being humiliated by a
judge who treats them as common criminals. Well, the fact of the matter is, the
teachers are disobeying the judge's direct orders. They are, at the least,
breaking the law. One teacher, when defending herself before the judge, claimed
she had bought equipment for her classroom with her own money. Should this
proof of generosity keep her out of jail? Let's not forget to mention that the
teacher went on to say that she endured emotional and physical abuse at the
hands of her autistic students. A special education teacher who uses her
autistic students' abuse of her as an excuse for staying out of jail not only
demonstrates her own selfishness, but also shows that the teachers in
Middletown Township have gone way past striking for a noble cause. They are the
only ones to blame for their incarceration, and it is compromising the
education of their students. Going on strike is a right that all unionized
employees in America should have and legally do have under the National Labor
Relations Act. But what should justify a teachers' strike? Unfair contracts,
false Board of Education promises, health insurance conflicts, lack of
air-conditioning and a functioning coffee-maker in the teacher's lounge? Most
of these are valid reasons for striking, and Middletown teachers have some of
these legitimate complaints. But striking to spite the school board and a
superior court judge is wrong and irrational. And the judge they are up against
will continue to put teachers in jail until high school freshmen graduate.
Unfortunately, sometimes going on strike is the only way to get administrators
to the bargaining table. But in this case, every time a point in favor of the
teachers is brought up, Middletown teachers shoot it down. The judge told the
teachers he would appoint a mediator for the bargaining session as long as the
teachers would return to work. But they refused. They were given the
opportunity to have a neutral arbitrator mediate the conflict, and they turned
it down. These teachers have crossed the line between standing up for what's
right and illegal protesting. Currently, our judicial system and the
Constitution of the United States are being put to the test as we seek out terrorists
and interrogate criminals and pass Congressional laws (however controversial
they may be) to protect Americans. Is an extra expense for health care
insurance worth sending the message to your students that breaking the law is
justified? Is defying a superior court judge worth walking out on your
students? If the answer to these questions is "only when the time is
right," now is certainly when the time is wrong. Striking is an option
most union workers will always have. Despite this country's severe shortage of
nurses, many nurses are still underpaid and mistreated, and strikes can be an
effective combatant against hospitals. Unfair contracts are often an issue in
many labor disputes. And yes, teachers deserve to make a decent, fair living
just as everyone else in this country does. The Middletown teachers earn an
average of $56,000 a year, and it is up for debate whether or not this is
already an acceptable salary. But the Middletown teachers have taken striking
to a new level. They have allowed themselves to become so diluted in their
self-pity and their desire to set an example that they don't realize the actual
example they are setting: defy the law and walk out, even if it means that
students won't learn. Some students, including many football players (the
coaches for the Middletown South High School state champions are currently in
jail with the teachers) have shown their support at the courthouse. Do any of
them realize what is going on here? Almost everyone in this country is facing
economic problems right now. Teachers are not singled out, and at a time when
they are needed the most, the Middletown teachers have walked out. They walked
out on their students, and in essence, they walked out on the entire youth of
this country. They should be ashamed, for they have become so wrapped up in
themselves that they have completely forgotten who, as teachers, they must be
dedicated to: their students. (C) 2001 Cornell Daily Sun via U-WIRE
http://news.excite.com/news/uw/011206/university-206
******************************
Autistic Children at Heightened Risk of Epilepsy
Updated: Fri, Dec 07 5:25 PM EST
By Joene Hendry
NEW YORK (Reuters Health) - Children with autism appear to have a
higher-than-average risk of epilepsy, suggesting that the two share a common
brain abnormality, researchers report.The investigators say that epilepsy
should be suspected when an autistic child shows signs of a seizure
disorder.Autism and epilepsy are outwardly very different. Epilepsy is a
seizure disorder; autism affects a person's ability to communicate, relate to
others and react to his or her environment--although some people with the
disorder are high-functioning.But both are brain-based disorders, and past
studies have shown that autism and epilepsy often occur together, with epilepsy
seen in up to 30% of people with autism."We know there is a higher rate of
seizure disorders in autism," Dr. John Pomeroy told Reuters Health.
To See The Full Story: http://news.excite.com/news/r/011207/17/health-autistic
******************************
Surgeon
general says doctors, dentists often refuse to treat the retarded
By Connie Cass, Associated Press, 12/6/2001 16:23 WASHINGTON (AP) Too many doctors and dentists either refuse to
treat mentally retarded patients or give them inferior care, Surgeon General
David Satcher said Thursday. Satcher urged medical schools to prepare doctors
better and said public and private health insurers must do more to pay for good
care. ''People with mental retardation are stigmatized,'' Satcher said.
''Sometimes they are stigmatized by the professionals charged to serve them.
This stigma is real, it is painful, it is pervasive and it is unfair.'' More
studies are needed to document the extent and causes of the problem, Satcher
said, but testimony from doctors, mentally retarded patients and their families
shows this is ''a major weakness in the health system in this country.''
Because the mentally retarded are three times as likely to live in poverty as
the general population, they are disproportionately affected by shortcomings in
state and federal health programs for the poor, Satcher said. Some doctors and
dentists won't treat Medicaid patients because the Medicaid reimbursements are
too low, he said. And, he said, ''Some doctors are not comfortable treating
people with mental retardation.'' He also faulted private insurance companies
for charging exorbitant premiums for people with mental retardation.
To Read The Full Story:
http://www.boston.com/dailynews/340/wash/Surgeon_general_says_doctors_d:.shtml
******************************
Potential
Risk for Lead Exposure in Dental Offices
MMWR. 2001;50:873-874In December 2000, the Washington State Health
Department discovered white powder that was found to be lead oxide in boxes
used to store dental intraoral radiograph film. The Washington State Health
Department alerted state health departments throughout the United States.
Subsequently, the Wisconsin Division of Public Health (WDPH) conducted an investigation
of dental offices in the state. This report summarizes the investigation, which
indicated that similar storage boxes are used in Wisconsin. The findings
indicate that patients are at risk for exposure to a substantial amount of lead
during a dental radiograph procedure if the office stores dental film in these
boxes.During January–March 2001, radiation safety inspectors in Wisconsin
visited 240 (9%) of 2,748 dental offices with radiograph equipment. Of these,
43 (18%) stored radiograph film in table-top, lead-lined boxes. Of 11 dental
offices in use for >20 years, four (36%) used this storage method.The boxes
were usually made of wood and shaped like a shoe box. All boxes contained a
white powder residue. A bulk sample of the residue contained 77% lead
identified as lead oxide. Visits to dental offices occurred before and after a
mailing had been sent by WDPH to all dental offices with radiograph equipment
warning about possible lead exposure and recommending that lead-lined storage
boxes be discarded. Many offices discarded the boxes before the inspection. In
one office, after receiving the warning, paper was placed in the bottom of the
box and film was placed on top of the paper. In another office, dental
instruments had been placed in the box. Other offices used a vertical
wall-mounted, lead-lined film dispensing box. Some of these boxes and the film
in them also contained lead.A mock dental radiograph procedure was performed
during which wipes were placed on the tips of a dental hygienist's fingers
whenever a patient's mouth was touched. Analysis of these wipe samples found
3,378µg lead that could have been transferred from the hygienist's fingers to a
patient's mouth. Lead also could have been introduced directly from the film.
Wipe samples of eight film packets from two dental offices that used the
lead-lined storage boxes identified average lead levels of 3,352µg (range:
262µg-34,000µg). During a typical radiographic procedure, usually conducted
once per year, 
4
separate views are taken. When children's teeth develop to the point where
adjacent teeth touch (usually age 3 years), radiographs may be taken if the
dentist suspects decay.Because of the increased susceptibility of children and
the developing fetus,1 lead exposure is particularly dangerous for children and
for women who are or may soon become pregnant. The approximate half-life of
lead in blood is 25 days2; as a result, the window for identifying lead
exposure following dental radiographs is a few months. Health-care providers
who discover high blood lead levels of unexplained origin should consider this
possible route of exposure.Advances in dental radiograph technology have
reduced scatter radiation
the
reason for protective boxesmaking
lead-lined radiograph storage boxes unnecessary. Because lead oxide cannot be
removed adequately, the film packets stored in lead-lined boxes and the film
packets stored in them should be discarded.
To See The Entire Story:
http://jama.ama-assn.org/issues/current/ffull/jwr1205-3.html
******************************
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