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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday December 11, 2001
INDEX:
* US research on controversial vaccine may vindicate
consultant who was
forced to resign
* Book Review " Beyond The Wall"
* Markers Found For Irritable Bowel Subgroup With Celiac
Disease
* Autism remains much a mystery
* A gift and a curse for Max
******************************
9/12/01 Sunday Express
US research on controversial vaccine may
vindicate
consultant who was forced to resign.
Exclusive by Lucy Johnston, HEALTH
EDITOR
New tests back expert who sounded alarm over triple jab for children
Controversial vaccine research which led to the resignation of a senior
consultant from a British hospital has been backed by fresh findings from the
United States.
Andrew Wakefield, a former consultant at London's Royal Free and University
College Medical School, said last week he was forced to resign from his post
because of his work linking the measles, mumps and rubella vaccine with gut
damage and autism.
The new US study provides further evidence to support his view, indicating a
strong correlation between autism and stomach problems in children.
The research was carried out by Dr Timothy Buie, a specialist at Harvard
Massachusetts General Hospital, who examined stomach samples from 400 autistic
children. His findings, announced last week at the Conference for Autism in
Portland, Oregon, showed that 55 per cent of autistic children had a long-term
stomach disorder.
His work has been welcomed by Wakefield, whose own studies blamed the gut
problems and autism on MMR.
Wakefield had been working with 200 children with such problems - and there was
an 18-month waiting list for new patients. His theory is that the measles
component of the vaccine may damage the gut wall, causing toxins to leak out to
the brain and leading to brain damage.
His theory has been echoed by thousands of parents who say their children were
developing normally but began to lose skills such as speech and play after they
were given the jab. Many also say their children started to develop bowel or
digestive problems at this point.
Despite this evidence, the Government refuses to acknowledge any possible link
between MMR and autism and insists the jab is perfectly safe.
Wakefield, who is currently talking to experts in America about his research,
told the Sunday Express he was glad his work had been corroborated.
"These findings are extremely significant and provide important evidence
that reinforces the need for a proper investigation," he said. "No
one else in the UK has been prepared to look at this issue because of the
controversy it
attracts.
"The tragedy is these children may only be ill because of the vaccine they
were given and we should take responsibility for the fact this may have caused
them to suffer a dreadful form of autism." He added: "I was forced to
resign because my work is controversial and politically sensitive. It had
become immersed in loads of conflict of interest - the Government and the
pharmaceutical industry are inextricably linked and there was clearly a lot of
pressure on this work.
"It is very, very sad and there is no excuse for what as happened to
me." But he added that he intended to continue his work - now funded by
private donors.
"The medical establishment may not have the stomach for it, but I cannot
abandon these children. But I'm not going to whinge, I am going to move
on."
A spokeswoman at the Department of Health said: "The advice of our
independent experts remains that, on the scientific evidence available, there
is no causal link between MMR and bowel disease or autism.
"This reseach does not affect the Department of Health advice that MMR
remains the safest way to protect children against three potentially serious
illnesses, measles, mumps and rubella."
******************************
What's new this month at
http://www.specialfamilies.com:
A new book
review:
"Beyond the Wall: Personal Experiences with Autism and Asperger
Syndrome" by Stephen Shore.
(reviewed by Robert Naseef, Ph.D.)
There is certainly no shortage of books about autism, and there is
also a rapidly growing collection of titles about Asperger Syndrome.
When a child receives a diagnosis in the Autism Spectrum, parents
search for the key to unlock the puzzle of this mysterious and
baffling condition, and it's hard to know where to start reading.
Occasionally there is a special contribution such as Beyond the Wall:
Personal Experiences with Autism and Asperger Syndrome by Stephen
Shore. As an individual who grew up with autism, Shore has an
exceptional input to give. (Read the rest at
http://www.specialfamilies.com)
New Questions and Answers:
(read the answers at http://www.specialfamilies.com/id80.htm)
Ask Dr. Bob Naseef : Coping with angry outbursts presents quite a
challenge. "My daughter is suffering from Post Encephalitic Syndrome.
She is physically 5-years-old, but her mental age is 2 1/2. My
problem arises at school. She lashes out at whoever is in the way.
How can I help her to try and control her anger?" Read some advice
to a discouraged Mom.
When should a parent consider anti-depressant medication? Depression
can be a typical reaction to a heartbreaking or traumatic life
event. "The emotional landscape for parents who have a child with
special needs can be slippery and treacherous at times." This article
explores mental health issues that parents may encounter.
"Special Children, Challenged Parents" has been named an alternate
selection by Behavioral Science Book Service for December.
http://www.amazon.com/exec/obidos/ASIN/1557665354/rnaseef/104-7236001-
0836763 will take you to Amazon.com where you can read more about it
and order a copy if you are so inclined. You can also write a brief
review at Amazon if you have already read the book.
If you think thus information may be of use to someone you know,
please forward them this e-mail or direct them to
www.specialfamilies.com
Wishing you peace and comfort for the holidays and always,
Bob Naseef
******************************
Markers Found For Irritable Bowel Subgroup With
Celiac Disease
Gastroenterology
12/06/2001
By Elda Hauschildt
HLA-DQ2 expression and increased intestinal celiac disease-associated
antibodies are markers for subgroups of irritable bowel syndrome (IBS) patients
with latent or potential celiac disease.
German researchers say these IBS patients could benefit from gluten-free diets.
They point out that both celiac disease and IBS patients can present with
abdominal symptoms in the absence of mucosal abnormalities.
Investigators from Freie Universitat Berlin studied two groups of patients: 102
with IBS and 41 with celiac disease. They note that disease was active in 10
patients in the celiac group. Another 26 celiac patients had been treated.
Disease was latent in the remaining five celiac patients.
The researchers measured serum immunoglobin A (IgA) against gliadin and
tissue-transglutaminase (intestinal celiac-associated antibodies) as well as
IgA and IgM against gliadin, tissue-transglutaminase and the dietary proteins
in duodenal aspirate.
They counted intraepithelial lymphocytes (IELs) in histology sections. They
also investigated the expression of HLA-DQ2 by polymerase chain reaction.
Finally, they examined the effects of six-month withdrawal of gluten in 26 IBS
subgroup patients.
"Most celiac patients expressed HLA-DQ2 and had increased intestinal
celiac-associated antibodies," investigators report.
"Celiac-associated serum IgA and IEL counts were increased in active
celiac patients in contrast to treated or latent celiac patients."
"In IBS patients, 35 percent were HLA-DQ2-positive and 23 percent had
increased IEL counts."
No IBS patient had increased celiac-associated antibodies in serum, but 30
percent had increased antibodies in duodenal aspirate.
"Stool frequency and intestinal IgA decreased significantly under a
gluten-free diet in the subgroups of HLA-DQ2-positive and intestinal
antibody-positive IBS patients, compared with IBS patients without these
markers," the researchers point out.
Gastroenterology, 2001; 121: 1329-1338.
http://www.docguide.com/news/content.nsf/news/8525697700573E1885256B1900823D19?opendocument&wf=yes
******************************
Autism remains much a mystery
Recommend
this story to others.
Autism is a brain-based developmental disability that affects
communication and social interaction. Characteristics may include engagement in
repetitive activities, resistance to environmental change or routines and
unusual responses to sensory stimuli.Symptoms typically surface before age 3.
It is considered a spectrum disorder, with characteristics occurring in a wide
variety of combinations, from mild to severe. It is much more common in males.
Sixty percent of sufferers are believed to be mentally retarded.
Illustration: STEPHANIE BARROW / The Register-Guard
While researchers are learning more about autism all the time, it remains
something of a mystery. It has a strong genetic basis, but studies have found
environmental factors also play a role. Drugs may temper syzmptoms such as
anxiety, but there is no known cure. Early intervention is seen as critically
important in helping autistic people fulfill their potential.Asperger's
syndrome is a disorder believed to be at the high-functioning end of the
spectrum. People with Asperger's typically have high verbal intelligence but
poor social skills; fixed, limited interests; a lack of physical coordination;
and unusual sensory sensitivity. They often lack the intuitive understanding of
the normal reciprocity of human interaction.The incidence of autism has skyrocketed
in the past decade. While better diagnosis has played a large role -
particularly in regard to Asperger's syndrome, which was recognized only
recently - most experts don't believe that fully explains the phenomenon.
Theories abound, but no culprit has been positively identified.RESOURCES
The Asperger Advocacy Coalition meets the second Tuesday of every month at 7 p.m. at Autism
Training & Support Inc., 1355-B River Road, Eugene. For information or to
be added to the mailing list, call Nan Lester at 345-3467.
Autism and Asperger's syndrome Web sites:
Autism Society of America, www.autism-society.org/
Autism Society of Oregon,www.oregonautism.com
Related:Bright
but shunned: Talented, quirky children struggle with a form of autism called
Asperger's
A
gift and a curse for Max
http://www.registerguard.com/news/20011209/1a.aspergerdefined.1209.html
******************************
A gift and a curse for Max
By ANNE
WILLIAMS
The Register-Guard
WHEN MAX LESTER was 4, he didn't give a hoot
about toy action figures, Legos, "Sesame Street" or most other
garden-variety preschool entertainment fare.Max, now 8, was too busy memorizing
dialogue from the movie "Titanic." And mourning Princess Diana. And tracking
the activities of President Clinton.
Diagnosed last
year with Asperger's syndrome, Max Lester, 8, is bright, inquisitive and
artistic, but he lacks the social know-how to relate to kids his own age. A
third-grader at the Family School, a magnet school that shares a campus with
Patterson Elementary, Max often eats lunch alone
.
Max adores
music. He has a vast collection of CDs and spends much time browsing the
selections at the House of Records, a shop near the University of Oregon.
Photos: NICOLE DeVITO / The Register-Guard
"He was very concerned about Clinton's knee
injury," recalled his mother, Nan Lester. "How was he going to get
around? Was he going to put on more weight?"Max is, as his mother is fond
of saying, "a different cat": bright, inquisitive, quirky as all get
out.Those are some of the more positive traits - enchanting, really - of
Asperger's syndrome, a neurological disorder affecting an estimated one in 300
to 500 children, four out of five of them boys.But as the Lesters know well,
Asperger's syndrome has the potential to obliterate lives.A form of high-functioning
autism, Asperger's wreaks havoc with motor skills, social know-how and sensory
integration. Children with the disorder are at risk of social isolation and
academic failure; as adults, they may never find partners or even be able to
live independently.Over and over, sometimes on a daily basis, Asperger's
syndrome tests the limits of Max Lester and his family. But they are unified
and resolute: Asperger's will ultimately be Max's blessing, not his
curse."We choose to look at it also as a gift," said Nan Lester, who
founded the Asperger Advocacy Coalition last spring after she and Max, who is
keenly aware of his disorder, agreed they wanted to meet and help other
families. "You either have to go with it, or it makes your lives hell."Parents with character
Above: After
vomiting up his lunch - dyspraxia makes chewing and swallowing difficult, and
he frequently throws up - Max recovers in the school nurse's office and pleads
to be allowed to call his mom. Teachers have learned to resist and give him
time and space. Usually, not always, he calms down. Below: Because of his
difficulty with handwriting, occupational therapist Emma Dane is working with
Max on keyboarding skills. Today's session didn't last long, with Max heading
to the rocking chair for a quiet 'break." Dane has learned a lot about the
sensory pitfalls of Asperger's from working with Max. Things as seemingly
innocuous as perfume, fluorescent lights, a pencil sharpener or a clothing tag
can be excruciating.
Nan Lester is certain Max was born into the
right family. Both she and her husband are a tad eccentric, she said, and have
an abiding appreciation for his offbeat intelligence and peculiar passions.
They've also got the necessary grit, savvy and resources to address their son's
many needs - and to fight his battles.The pair met in 1979 in their home state
of New York. He was artsy and edgy, a guitarist in a punk band, while she was
more of an incense-burning, Indian-print-skirt hippie. But they hit it off. He
worked with adults with developmental disabilities and later became a dentist.
She became an advertising copywriter and producer.They moved to Eugene in 1993,
when Nan was seven months pregnant with Max. He has a private dental practice.
She quit work when Max was 2 but soon hopes to pursue a second career in the
counseling field.Nan Lester has a blunt style and a wry sense of humor. She
confesses she never had much interest in kids before she had her own. Raising
her second child, 4-year-old Oliver, has been illuminating, she said."Max
was just so far from normal," she said, recalling his fixation on family
photo albums and his dad's hockey magazines at the age of 2. "It's really
just hitting me now, seeing Oliver."Max wasn't diagnosed with Asperger's
until last year; before that, doctors had only identified his dyspraxia, a lack
of motor planning ability and muscle control related to Asperger's. In Max's
case - perhaps exacerbated by birth trauma during a rocky delivery - it is much
more severe than usual, rendering him virtually unable to run or write.Nan
Lester has a theory that most people with Asperger's fall into one of two
categories: the geeky, scientist/engineer type or the oddball, artistic type.
Max is clearly the latter.Perhaps above all other interests, the boy adores
music. He has a vast collection of CDs, and counts among his only true friends
the employees at the House of Records, an eclectic new and used record shop
near the University of Oregon. Two of them came to his birthday party last
July, including Greg Sutherland.
After a meltdown
and some quiet time in the rocking chair, Max Lester is ready to engage again
with his instructional assistant, Diane McWhorter. Part of a school behavior
plan created for Max encourages staff to understand that, by letting Max take
breaks, they're not simply reinforcing
negative behavior
.
Max spent a lot of time down on the ice when he first joined the newly formed
Oregon Special Hockey team. Within a few weeks, he had improved enough to try
to get a few pucks past his dad, David Lester.
"Max
is pretty unusual, in that he knows a lot more about music than most kids, and
he's pretty passionate about it," Sutherland said one recent afternoon,
helping Max sort through the shop's Kiss collection.Besides Kiss and a few
other heavy metal bands, Max loves the music of the '60s and early '70s: the
Beatles, Bob Dylan, Fleetwood Mac."I hate the Back Street Boys and In
Sync," he said with genuine disdain. "They just sing crappy
music."However, he added, "the all-time worst, most crappy, suckiest
music EVER is country. I hate country!"Max loves to watch documentaries
about '60s and '70s politics, and he reads The Register-Guard. He especially
likes the editorial cartoons, Peanuts and, lately, the Gang of 9, an ongoing
series of paid cartoon advertisements skewering the Eugene City Council's
left-leaning majority."He just makes connections and sees things a lot
differently than other kids his own age," David Lester said. "He kind
of lives a little bit in an adult world."While Max hits it off with many
adults, the same can't be said for peers."The most difficult thing about Asperger's
is no friends," Nan Lester said. "It just breaks your heart. And the
torturing by other children."Agitated by changesA big boy with a
mop of dark hair and a moonish, rosy-cheeked face, Max has been teased some at
school this year, but that's only one reason he's had an especially rough time
of it.In early September, an oven fire caused extensive smoke damage to the
family's roomy, historic home on a hill off West 18th Avenue. Typical of kids
with Asperger's, Max doesn't cope well with change, so the jumble of displaced
furniture, ladders, paint buckets and contractors has been a continuing source
of agitation. Flopping down on his bed on a recent afternoon, he noticed a
painter had taken his bedroom door off its hinges."I need my door!"
he hollered, visibly flustered.And then came the Sept. 11 terrorist attack, a
subject Max can't get out of his head.Nan Lester was working out that morning
at the Downtown Athletic Club when she heard the news and rushed home. Max was
already awake and watching CNN by the time she got there. (He speculated that
the Palestinians were trying to kill Jews in New York - a pretty sophisticated,
albeit far-fetched, guess for an 8-year-old.)He went to school that day but
came home early, unable to keep his emotions in check."I've been upset
about this tragedy - it's so sad," said Max, who pronounces it
"twagedy" (his dyspraxia affects his speech, too).In the weeks since,
Max has immersed himself in news accounts about the attack, and brings it up
often, asking questions and raising theories with just about anyone who will
listen. "He's really sure that (Saddam) Hussein has something to do with
it," Nan Lester said.Max is in third grade at the Family School, a magnet
school that shares a campus with Patterson Elementary in west Eugene. It's his
third year there (he went to the Alternative Kindergarten at Harris
Elementary), and until recently it was shaping up to be his worst yet.On a
recent Thursday, Max spent his designated morning half-hour in his regular
classroom and even sat through an entire afternoon assembly - not always easy
for a kid who can spiral into sensory overload from a bouncing ball.But much of
the day, Max ricocheted between moments of attentiveness, quiet
"breaks" on a rocking chair, and near-meltdowns. During a morning
math lesson in the school's learning center with special education teacher
Jeanne Bowers, Max spent at least half the time either in the bathroom or
curled up on his rocking chair, thumbing through books.At lunch time, Max sat
conspicuously alone in the cafeteria, wearing an oversized Crosby, Stills &
Nash T-shirt and nibbling corn chips. Afterward, he vomited in the boy's
bathroom. Because of his dyspraxia, he has difficulty chewing and swallowing,
and he frequently throws up - though far less often than he used to.He told
counselor Lynn Marx he was sick. "I need to call my mom," he pleaded.
"I'm serious!"But she and his teachers have learned to resist, to
talk softly and give him time and space. Usually, not always, he calms
down.Marx took him in her office and pulled out her shark puppet, Wally, who
"talks" to Max often. Max, who has a fierce sense of justice and an
infallible memory for slights, said he was still upset with some kids who
teased him recently; Marx - as Wally - said maybe there are just some kids he
should stay away from. For a moment, Max seemed like just another troubled
little kid.After a quick, lonely recess on the playground, Max went to a
handwriting lesson with Emma Dane, an occupational therapist who works with him
twice a week. Handwriting is almost universally difficult for people with
Asperger's, and next to impossible for Max. She tried to help him by marking
dots where the letters should go, but the session quickly deteriorated. Max
broke down in tears, crumpled up his paper and begged to call his mom, then
retreated to his rocking chair, waiting for his rage and stress to
subside.Later, he skipped his music class and ended a computer keyboarding
session with Dane early, again heading to his rocking chair.Dane has learned a
lot about the sensory pitfalls of Asperger's from working with Max. Things as
seemingly innocuous as perfume, fluorescent lights, a pencil sharpener or a
clothing tag can be excruciating."First, you take a thing that bugs you,
like fingernails on a chalkboard, and you multiply it like 100 times,"
Dane said. "That's what it's like for Max. And it's hard to eliminate
those things in a teaching environment."Space to decompressReflecting
on it the following week, Bowers, the special education teacher, said that was
actually a pretty good day for Max. Some days are so much worse."But I
certainly wouldn't say we're at where we want to be," she said.In October,
Bowers and Max's instructional assistant, Diane McWhorter, attended a Portland
conference on Asperger's syndrome, along with members of the Eugene School
District's newly formed autism team."It really helped me understand what
was going on with Max, especially the sensory part," Bowers said.
"One of the main things we learned was that these kids need to have space
just to decompress, a sensory-safe space, and they need to be allowed to go to
it when they need to."Bowers wrote up a behavior plan for Max afterward
and shared it with all his teachers. She said they're working on incorporating
it, but it's tough in some cases - for example, they haven't yet found a good
"safe space" for Max in his regular classroom, which is in a
different wing from the learning center. And it's been difficult for some staff
to understand that, by letting Max take breaks, they're not simply reinforcing
negative behavior, she said.But Bowers is convinced Max is making progress, as
is the Family School staff."Now he's taking more breaks instead of having
those meltdowns," she said. "He was just at this crisis level when we
started this plan. He was having meltdowns sometimes right away in the morning.
Now he's a little more stabilized."Nan Lester said she's encouraged by the
recent efforts of most of Max's teachers. She shudders, though, when she thinks
of thrusting him into a public middle school. Ensuring that the Eugene School
District designs a suitable program for Asperger's kids in that age range is
one of her top priorities.Max has so many talents, so many gifts, she said - if
only they can be appreciated, harnessed and nurtured along."He has a depth
of character that I don't see in typical people," said Lester, who calls
Max her hero. "If you've ever known someone who has to come up against
terrible adversity, there's this strength of character. That's what I see in my
son."
Related:Bright
but shunned: Talented, quirky children struggle with a form of autism called
Asperger'sAutism
remains much a mystery
http://www.registerguard.com/news/20011209/1a.aspergermax.1209.html
******************************
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