SCHAFER AUTISM REPORT "Healing Autism:
No Finer a Cause
on the Planet"
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NOTE: Third Update November Calendar of
Events is now out
Over 50 New Events Listed Since
November 1!
http://home.doitnow.com/~events
CARE
* NY Best Buddies Help Disabled Find Special
Friendships
* A Conflict of Interest in
RESEARCH
* Emerging Field of Epigenetics
Hints At New Culprits In Disease
TREATMENT
* Pill May Help People Overcome Fears
FORENSIC
* Surprise Ending To Lurid Trial
EDUCATION
* Group Says 'Lawsuit Culture' Hampers
Schools
COMMENTARY
* Litigaphobia or
Fear of Accountability?
CARE
NY Best Buddies Help
Disabled Find Special Friendships
They say good friends are
hard to find, and as you grow older, you realize that's true.
[John Gray is an anchor at WTEN News
Channel 13. His column appears every Wednesday.] http://www.troyrecord.com/site/news.cfm?BRD=1170&dept_id=7018&newsid=1049910
6&PAG=461&rfi=9
Imagine, if you will, having a friend who
is always happy to see you. Someone who has nothing but kind
thoughts and would do anything for you. Now imagine that person is
special. By special, I mean someone intellectually disabled. When we were a
less polite society, we called these people mentally retarded.
When I was a kid, these special
individuals were kept separate from the rest of us. They rode in special school
buses and kept to themselves, and for the most part, were invisible. It's not
like that anymore. Now they sit right next to your child in school, raise their
hands when the teacher asks a question and sit at the same table during lunch.
Still, as much as schools try to “mainstream,” they are different and, truth be
told, they are lonely.
That's where Best Buddies New York comes
in. It may be the single greatest program that you and I never heard of.
Best Buddies is a lot like the Big
Brothers/Big Sisters program - but with an important difference. They find
young adults and match them with a person who is, as they like to say,
intellectually disabled - Down syndrome, autism, disabilities of this sort. But
not severely disabled. These are people who function extremely well in society
but lack one important thing - a friend.
The program was the brainchild of Anthony
Kennedy Shriver (son of Eunice, brother of Maria). He was a student at
Today, there are more than 400 high
schools and 300 colleges with a Best Buddies program, including 12 schools in
the Capital District alone.
Program manager Susanna Adams met me for
coffee to talk about Best Buddies, her face lighting up when she talked about
these special people who are looking for friendship.
“These individuals are so sweet and
giving. All they want from their buddy is friendship. And it's not a big
commitment. All we ask is that a volunteer have contact with them once a week.
That can be a phone call, e-mail, just sitting and talking. It's not like you
have to spend a lot of money or go places to make this person happy.”
Susanna says the rest of us take
friendship for granted. Just think about sitting at home on a Saturday night
wanting to go somewhere but not wanting to sit alone. That's the life of the
intellectually disabled every day. She adds, “Just to have someone to sit with
them at a football game can mean so much to these individuals. It makes them
feel like they belong. Like they are not so different after
all.”
Susanna can't say enough about the
outstanding young people in local schools who have volunteered to be a Best
Buddy. There's Pamela at The College of Saint Rose and Lidiya
at
The local chapter of Best Buddies will
celebrate its one-year anniversary with a fund-raiser at
Most of us spend our lives chasing money.
These individuals seek love. Makes you wonder which of us is the intellectually
disabled, doesn't it?
* * *
A Conflict
of Interest in
An audit suggests that a
flaw in state law keeps the state from efficiently funding services for those
with developmental disabilities.
[By Steve Painter for
Eagle,
Lori Burnshire's
son needs constant attention.
Without it, 11-year-old Peytn might walk in front of a moving car, turn on a gas
stove or do any number of things that could endanger his own life or those
around him.
Peytn is
severely autistic. With state-funded assistance, his family is able to take
care of him at home, maintaining at least some
semblance of what most people would consider a normal life.
“There's always going to have to be
someone to look out for his safety,” Burnshire said.
Taking care of disabled youngsters and
adults at home -- or as close to home as possible -- was the point of a 1995
state law that led to closing state hospitals in favor of community-based care.
A recent audit, however, raises questions
about whether the money is being spent effectively.
It questions whether too much money is
spent on administrative costs and not enough on clients.
It also questions whether the community
organizations that distribute state money keep too much of it for themselves at
the expense of other service agencies.
In many areas of the state, local
agencies known as CDDOs -- community developmental
disability organizations -- not only hand out the money but compete with other
agencies to serve the disabled.
Auditors said the “inherent conflict of
interest” was built into the system when the 1995 law was passed and can't be
eliminated without changing the structure.
Based on the findings of the audit, the
Legislature may consider changes to the law, Senate President Dave Kerr said.
The state spends $254 million a year on
services for the developmentally disabled. Much of that money is distributed at
the local level by the CDDOs.
If the CDDOs
are keeping many of the clients to themselves, as the audit suggests, that
means some parents would not have the opportunity to use other agencies that
better fit their needs.
Burnshire and
another parent, Dorrene Sprecker
said having a choice of care providers is essential to making a care plan work
for their families.
Sprecker relies
on outside help before and after school and sometimes in the evening for her
18-year-old autistic son, Andrew, whose vocabulary is limited to about 20
words.
The in-home care lets Sprecker
and her husband help their four other children with their homework and maintain
both of their incomes.
“This has been a lifesaver for my
family,” she said.
The 100 hours of paid care the Burnshire family gets each month allows Lori and her
husband to fix meals and attend school functions with their other two sons, as
well as keep up with their jobs, she said.
Both families were initially told their
sons didn't qualify for help but pressed their cases.
“If you get a 'no,' call them back,” Sprecker said.
Neither mother recalled getting
information about the variety of help that different organizations provide in
the community, as the CDDOs are supposed to supply
once a year.
+ Article continues: http://www.kansas.com/mld/kansas/7232283.htm
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* * *
RESEARCH
Emerging Field of Epigenetics Hints At New Culprits In
Disease
[By Sue Goetinck
Ambrose for The
After scientists decoded the human
genetic blueprint, the mysteries of disease were supposed to be simpler to
solve.
But researchers are starting to warn that
the genetic blueprint has extra text that's only beginning to emerge. Solving
some disease mysteries, they say, won't happen until this extra information is
fully understood.
Scientists already know this extra layer
of information commands cancer cells to flourish. Now there's speculation that
it might be at the root of autism or other neurological disorders, or even
account for certain birth defects in test-tube babies.
This extra information could also solve
some genetic brainteasers, such as why “identical” twins aren't always
identical or how your grandparent's diet can land you in the hospital.
Techniques to study this add-on to the
genetic code are still emerging. But as tools improve, researchers anticipate
revelations about disease and a new frontier for medicine.
“I think,” said David Allis, a molecular
biologist at
Scientists refer to the extra layer of
information as “epigenetic” – outside ordinary genetic inheritance. Basic
hereditary information is spelled out in long chains of DNA letters that make
up an organism's genetic blueprint. Cataloging the human genetic blueprint, or
genome, took more than a decade, and has already given insights into why some
people get sick and others stay healthy.
Epigenetic information embellishes the
blueprint.
Instead of existing as a bare set of
instructions, researchers have found, the genetic blueprint is studded in
special places with chemical flags that designate whether or not a gene should
be activated. Portions of the blueprint are also wrapped in different ways as
another type of on/off signal. In other cases, small pieces of DNA's molecular
cousin, RNA, settle in certain places on the blueprint to remind a cell to keep
that area quiet.
Sometimes this extra biological
information is passed from parent to child and sometimes it isn't.
“What we inherit from our parents is not
naked DNA,” said Dr. Arturas Petronis,
a researcher at the Centre for Addiction and Mental Health in
For years, hints that epigenetic
information can wield great power have been scattered throughout the medical
literature. Experiments have shown that epigenetics
drives cancer and hinders attempts to clone animals. That work is leading
researchers to wonder whether epigenetics reaches
into other aspects of human biology.
Some scientists speculate that autism,
schizophrenia, bipolar disorder and other diseases may reflect epigenetics in action. And if epigenetics
is so important in spurring cancer, experts say, perhaps safety tests of
chemicals should check not only for damage to genes but also for epigenetic
insults to the genetic code. Likewise, nutritionists are starting to suspect
that diet can alter epigenetic information passed on to future generations.
“All we have at this point is a theory,” said Petronis.
“We still have a long way to go, and maybe we are wrong. But ... we can explain
a lot of findings ... and can suggest some critical experiments that can tell
us whether this theory is correct.”
This emerging epigenetic theory rests
upon the basic facts of heredity. Virtually each cell in the body contains two
copies of the genome, one inherited from each parent. Cells constantly refer to
this DNA instruction manual to make proteins and other molecules that keep the
body up and running.
Sometimes tiny misspellings or longer
gaps in the DNA code cause disease. These errors can be passed on from parent
to child, explaining why conditions such as cystic fibrosis or color blindness
are inherited. Spelling differences in the DNA code, scientists say, also
explain people's varied sizes, shapes and colors.
But typos and garbled syntax are not the
whole story, geneticists now say. Identical stretches of DNA can give a cell dramatically different instructions, depending on how
the epigenetic information has annotated the genetic code.
“It's like peeling layers off the onion,”
said Randy Jirtle, a molecular biologist at Duke
University Medical Center in Durham, N.C. “This is another layer of control” in
the bureaucracy cells have established just to read their own DNA.
Accidents and changes happen in the
epigenetic layer, too. Even if researchers don't know why epigenetic
information gets perturbed, the fact that it's not foolproof may explain a lot.
For instance, in recent years, scientists
have spent millions of research dollars hunting for DNA misspellings that might
be responsible for schizophrenia, bipolar disorder, diabetes, asthma and other
diseases. So far, these hunts have turned up few culprits.
Most scientists believe the gene hunts
have been difficult because there are so many misspelled genes working
together, making any one gene hard to find. But equally possible, some
researchers say, is that just one gene or a few genes are at the heart of these
diseases, and the epigenetic information attached to them varies from person to
person. Studies that focus on DNA misspellings might miss those genes.
Geneticists have also been unable to explain why identical twins sometimes
aren't. Born of the same egg and sperm, the twins' genetic blueprints couldn't
be more similar. Yet physicians have known for decades that one twin can become
chronically ill while the other carries on in perfect health. If one identical
twin is autistic, for example, the other often is, too, but only in 60 percent
of the cases. For people with schizophrenia and bipolar disorder, two debilitating
mental illnesses, the rate for their identical twins hovers near 50 and 75
percent.
Doctors have explained this twin paradox
by saying something in the environment – a virus, say, or stress – triggers
disease in one twin but not the other. But decades of searching hasn't turned
up convincing triggers.
Enter epigenetics.
What if, scientists are asking, chemical flags settle on one twin's DNA but not
the other's? If these flags are sprinkled on or stripped from a gene that's
critical for brain development, could autism or schizophrenia develop?
“Pediatricians will call me and say this is cool,” said Rockefeller's David
Allis. “One identical twin will be hugely normal and the other will be hugely
autistic. What gives? The biology tells us that the kids are really genetically
matched sets.”
There's still no proof that epigenetics is behind identical twins' differences. But
it's such a logical explanation, researchers argue, it's worth investigating.
A recent study by Petronis
and colleagues, for example, shows that genetically identical twins can differ
epigenetically. This year in Schizophrenia Bulletin, the scientists reported on
a study of two pairs of identical twins. In one pair, both twins had
schizophrenia. In the other pair, only one did.
The scientists scrutinized the epigenetic
flags on a gene implicated in schizophrenia. In the pair who both had the
disease, the scientists noted similar epigenetic patterns. In the other pair,
the twin who had schizophrenia was epigenetically more similar to the first
pair than to the sibling. It could be that the “sick” epigenetic pattern is
contributing to schizophrenia, Petronis said. Even if
that's not the case, he said, the study shows that two people who are
genetically matched can be epigenetically unique. Not all scientists are sold
on epigenetics as the solution to mankind's puzzling
ailments. Effects of the environment on disease are understudied, said Steve
McKnight, chairman of biochemistry at the University of
Texas Southwestern Medical Center at
“It's reasonable for people to think
about epigenetic phenomena to explain these diseases, but it wouldn't be the
first thing I'd turn to,” McKnight said. “I'd think that environmentally or
developmentally something happens that opens the window.”
Nevertheless, McKnight said, epigenetics is showing up so often that it's hard to
ignore.
In the past few years, more and more
medical conferences are including sessions on epigenetics,
said Arthur Beaudet, a geneticist at Baylor College
of Medicine in
“I think there's beginning to be a
growing awareness that this is something that maybe people should start looking
at,” he said. “There may be a lot going on in human biology that we really
haven't scratched the surface of.”
* * *
TREATMENT
Pill May Help People
Overcome Fears
[By Janet McConnaughey for the Associated Press.] http://story.news.yahoo.com/news?tmpl=story&cid=534&ncid=534&e=16&u=/ap/2003
1110/ap_on_he_me/fear_pill
Scientists say a pill may help people
overcome their worst phobias. In a small study released Monday, a drug already
on the market for tuberculosis helped people who were terrified of heights get
over that fear with only two therapy sessions instead of the usual seven or
eight.
The study, led by Michael Davis, a
professor of psychiatry and behavioral sciences at the Emory University School
of Medicine, was described at a session about unlearning fears at the Society
for Neuroscience meeting.
The drug, sold by Eli Lilly and Co. under
the brand name Seromycin, doesn't dissolve fear. But
in rats, it helped them unlearn fears faster,
Each got a pill just before their two
virtual reality therapy sessions, in which computerized goggles are used to
simulate going up a glass elevator in a hotel lobby. Nobody knew whether the
pill was a dummy or one of two doses of D-cycloserine,
the 500 mg used for TB or one-tenth that dose.
One participant dropped out. When checked
one week after and three months after the second session, the 10 patients who
had gotten placebos did slightly better than they had at the start. But the 17
on drug — the dose didn't seem to matter — did as well as or better than people
who had finished the usual course of eight treatments,
“That's pretty powerful stuff, and pretty
convincing,” said Alan Steinberg, associate director of the
And those who had taken the drug were
twice as likely as those on the placebo to be going up in elevators, driving
over high bridges and doing other things that fear of panic attacks had kept
them from doing before the therapy.
“That's an especially positive aspect of
these results,” said Mark Bouton, a psychology
professor at the
However, David Kupfer,
a
Other research has indicated that people
who go through therapy unmedicated for such problems
do better, in the long run, he said.
“People learn ... that they are the
powerful agent of change, not the medication,” he said.
However, Kupfer
said, it could be useful for people who have trouble with exposure therapy,
whether it is virtual reality, imagination or going out to face the fear.
* * *
FORENSIC
Surprise Ending To Lurid
Trial
[By Charles V. Bagli for the New York Times.] http://www.bayarea.com/mld/mercurynews/news/7241884.htm
For many in the courtroom, it was a
surprise ending to a strange trial. When a bailiff read the verdict, in a scene
televised live nationally, Durst, who had faced up to 99 years in prison,
looked stunned, his mouth agape as he gazed upward. A tight smile spread across
his face. Moments later, he hugged his defense attorneys, softly saying, “Thank
you so much.” In a certain sense, the verdict was not any more unlikely than
anything else heard over six weeks of testimony: a troubled multimillionaire,
who his lawyers say has mild autism, living on the cheap disguised as a woman;
the unsolved disappearance of his first wife; the unsolved killing of his
confidant in Los Angeles; a secret second marriage; a fatal shooting and a
grisly coverup; a nationwide hunt that ended with a
shoplifting arrest.
Jurors, who deliberated over four days,
said at a news conference after the verdict was read that there were holes in Durst's story, but that ultimately the prosecution had failed
to prove that he deliberately killed his neighbor, Morris Black. “The defense
told us a story and stuck to it,” said Chris Lovell, a juror. “The DA gave us
multiple scenarios of what may have happened.” Asked about the defendant,
Deborah Warren, another juror,
said: “I wouldn't ask him to
escort my daughter to her senior prom. Durst isn't the only crazy person in
+ Article continues:
+ http://www.bayarea.com/mld/mercurynews/news/7241884.htm
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* * *
EDUCATION
Group Says 'Lawsuit Culture'
Hampers Schools
Litigaphobia or fear
of accountability?
[By Caroline Hendrie.] http://www.edweek.org/ew/ewstory.cfm?slug=11edlaw.h23
Convinced that “
At a Nov. 5 forum held at the Brookings
Institution here, the
City- based organization
Common Good assembled panels of social scientists and education leaders to
discuss the question “Is Law Undermining Public Education?” It also released a
study on the subject by Public Agenda, an opinion-research organization also
based in
Common Good's founder, the
Educators, Mr. Howard said, have been
particularly hamstrung by that fear. “It diverts teachers from doing what they
do best, which is to be themselves and focus on the children,” he said.
Among the speakers at the event were Eugene W. Hickok, the acting
deputy secretary of the U.S. Department of Education,
They and others suggested that Mr.
Howard's group had put its finger on a compelling problem, but that finding
solutions for it wouldn't be easy. Also emphasized throughout the proceedings
was the valuable role that litigation has played in securing educational
opportunities for students from racial and ethnic minorities and children with
disabilities.
“Litigation in the realm of public
education really does have an exceptionally honorable history,” said Deborah
Wadsworth, the recently retired president of nonpartisan Public Agenda. “It is
also true that excessive litigation has teachers and principals literally
walking on eggshells.”
Mixed Feelings Pointing to the study
Public Agenda conducted for Common Good, Ms. Wadsworth said teachers and
administrators have many complaints about the role that litigation, and the
fear of it, play in schools.
Among the study's findings was that “for
many principals and superintendents, avoiding lawsuits and fulfilling
regulatory and due process requirements is a time-consuming and often
frustrating part of the job.”
The study, based mainly on three focus
groups in Illinois and New York state, also found high levels of concern among
teachers and principals about being accused of abusing students, and a strong
perception that “litigation and due process requirements often give
unreasonable people a way 'to get their way.' “
Still, Ms. Wadsworth said, educators seem
to possess less of a sense of urgency than doctors do about the need to reduce
litigation, except in the area of special education.
“A large proportion of educators defend
what's going on ... as preferable to the days when students had no rights,” she
said. “They have concerns about tilting things in the other direction, and are
suspicious of the motives of people seeking change. The idea that we're here to
reform the legal process is going to need some stoking.”
Mr. Howard made clear that exactly that
kind of stoking was what Common Good intends to do. He called last week's forum
the “opening salvo” in a campaign to change public opinion about the role of
law in the schools. The conference was also sponsored by the
Common Good is branching out after
initially focusing on the health-care industry, said Mr. Howard, whose 1996
book The Death of Common Sense was a best seller. He followed up that volume in
2001 with The Collapse of the Common Good: How America's Lawsuit Culture Undermines
Our Freedom.
'The Best Intentions' Another speaker was
Richard Arum, an associate professor of sociology at New York University and
author of the newly published book Judging School Discipline: The Crisis of
Moral Authority in American Schools.
Mr. Arum said the legal climate for
schools shifted in the late 1960s and early 1970s, when many students
challenged disciplinary actions related to political protest or other
free-expression issues. Because of legal precedents established during that
era, he said, since 1975 courts have handled far more challenges to
disciplinary actions stemming from general misbehavior, as well as incidents
involving alcohol, drugs, weapons, and violence.
While the courts often side with schools
in such cases, Mr. Arum said, they have fueled caution among educators about
disciplining students. The upshot, he contends, is that schools are having more
trouble socializing students at a time when their duty to do so has grown
greater because of shifts in family structure.
David Schoenbrod,
a professor at
He said Congress should consider
requiring that decrees involving schools stick to rectifying violations of law, be easier to modify as conditions change, and expire
after a specified time period.
“We need something like a school
litigation reform act,” Mr. Schoenbrod argued.
Legalistic thinking has had a pernicious
effect on the behavior of many educators, said Mr. Bersin,
a former federal prosecutor during the
“It's the anaconda in the chandelier that
stares down and makes you refrain from saying what you would otherwise say,” he
said. “We've created a due process system that defeats progress rather than
serves it.”
At the same time, he said, court battles
such as those waged to end school desegregation and the marginalization of
children with disabilities were “as much worth fighting as the ones put on our
agenda today.”
Those seeking to diminish the role of law in education should proceed
with caution, he added.
“I wish it would be easy to get out of
the quagmire we're in ... by simply waving a wand,” he said. “But we are a
system of laws, and it's going to take the law to get us out of this.”
* * *
COMMENTARY
Litigaphobia or Fear
of Accountability?
By Lenny Schafer, Editor
“Litigation in the realm of public
education really does have an exceptionally honorable history,” Deborah
Wadsworth, the recently retired president of nonpartisan Public Agenda, is
quoted in the above piece. “It is also true that excessive litigation has
teachers and principals literally walking on eggshells [must be hell for school
janitors]. . . [but] educators seem to possess less of
a sense of urgency than doctors do about the need to reduce litigation, except
in the area of special education.”
OK, time for a cliché: Some think tort reform is a good idea until it ’s their ox getting gored.
The school districts are under growing
budget pressures due to the explosion of autism rates, compounded by the
chronic under-funding of the IDEA, and until lately a flagging economy. Their anxiety is understandable and must be
addressed. School districts would not be out to gut the IDEA, which is what
this is all about, if they had the promised federal funds to create even
adequate programs for the growing number of disabled children.
Their conservative partners however,
should know better. Rather than whine
about how unfair the court system is, they instead should come to grips with
the real genesis of our sometimes kangaroo courts. It ain’t
the lawyers’ fault, it’s the laws: there’s too darn
many of them. The more ambulances we
create, the more lawyers are going to go chasing after them, and the more
students are going to become lawyers to jump on the gravy train. “Tort reform”
can create even more laws to add to the heap.
What ever happen to the free market fixing these things, anyway? Or did
homeland security make that conservative principle evaporate, too? I digress.
The main purpose behind this nose-holding
alliance between the old liberal school establishment, aka
centrists, and conservatives is to dismantle the IDEA: “we’ll give you
education reform if you give us tort reform” is their quid pro quo deal. If
this scenario isn’t scary enough, we even have the teachers unions coming out
in favor of neutering the IDEA in the name of reducing paperwork (also known as
reducing accountability). Talk about diversity!
All of this wonderful reform, of course, comes on the backs of those
amongst us who are the most silent, the most vulnerable and the most innocent:
our children with autism, cerebral palsy, mental
retardation, and the rest. Who will stand up for these children? Beyond
research, families with autism have
no national political autism organizations to protect our interests.
Let’s take a quick inventory of the major
* If the IDEA goes, so goes a key
resource for treatment for children with autism. The newly proposed toothless IDEA would usher
in a reemergence of special education window dressing programs that are easy on
the immediate districts’ pocketbooks. Recourse for parents will be largely
removed. Want a better program? Move. This lack of investment in bona fide
early intervention creates a disastrous rate of return, as these children
become adults requiring expensive care.
* The government appears to continue to
stonewall against doing meaningful research into the environmental cause(s) of
autism. They do this in some concert with pharmaceutical companies via their
shared scientist patronage pool. Both
have a great interest in not possibly exposing the hazards of the vaccination
programs that are at the heart of our public health system. If they don’t look
for the cause, they have a much better chance of it not being discovered. So,
all we have seen so far that make a splash are safe and flawed and tweaked
statistical research papers, debunked or credibly challenged even “before the
publishing ink is dry”.
* Virtually no research is taking place
publicly into the treatment of autism, beyond the scant amount done privately
by behaviorists. Parents have paid for some research at Harvard into diet and
supplement treatments of autism.
* There are almost no support services in
place for the care, transition or social inclusion of young adults or adults
with autism. The few programs that are
out there already have long waiting lists.
Soon the leading edge of the new autism population will age out of the
school systems and many of their parents are in for a rude shock at the void,
as we have become accustom to the entitlements of public education.
Sadly and ironically, our greatest hope
for changing this morbid status quo is in our growing numbers. If we fail to convince our neighbors for the
need to challenge and stop autism, autism will challenge and stop more of the
neighbor’s children. How many more
activist moms and dads will it take for our collective fortitude to quicken
into potent political action?
Put that on the list of things to
research.
If we don’t have them already, there soon
will be political scientists with autistic children joining our club to do the
job. It’s just a matter of time.
[The opinions expressed are those of the
writer and do not necessarily reflect the views of all those associated with
the creation of the Schafer Autism Report.]
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