FEAT DAILY NEWSLETTER
Sacramento, California http://www.feat.org
November 14, 2001
News Morgue Search www.feat.org/search/news.asp
·
“I Am A Child Advocate” Dr. Bryna Siegel Responds to
Critic
·
Asperger’s: Information and Advice
·
Schools Cope With Growing Number Of Autistic Children
[In last Saturday’s, November 10 posting of the FEAT
Newsletter, there was a strongly worded criticism of the credibility and
motives of Dr. Bryna Siegel from autism advocate attorney Maureen Graves of
Southern California, “IMFAR Accused of Sponsoring ‘Fraudulent’ Scientist” http://www.feat.org/scripts/wa.exe?A2=ind0111&L=FEATNEWS&P=R8635.
Siegel presented a paper on behavioral research at the
IMFAR conference being held in San Diego last Friday and Saturday. FEAT invited Dr. Siegel to address the
comments made in that posting and here is her response.]
I think Maureen is a bit of a loose canon. First, the various things she says about the
paper with Sheinkopf are untrue and not supported by the JADD article or JADD
correspondence that followed.
Her husband wrote threatening letters to both me and to my
collaborator Steve Sheinkopf insisting the paper be withdrawn based on his, rather
than peer reviewers’ understanding of the data.
Second, the present study was presented (as conference
abstracts often are, as preliminary data).
Third, the present report showed that more children
receiving EIBI reached normalization criteria than those with school based interventions—not
exactly a statement against EIBI—though the difference was not statistically
significant in the present sample.
Fourth, in fact, I have been involved in a rather large
number of due process hearing on behalf of parents—which you might verify by
contacting two prominent parents’ attorneys—Kathryn Dobel in (spedlaw@home.com),
and Stan Levin (slevin@davislevin.com) in Honolulu.
I have often supported EIBI and think it would be wrong
for your newsletter to misrepresent me as being a ‘school district’ expert
witness only. I am a child
advocate. I use my best understanding
or research plus my experience to say what I believe, in my ‘expert’ opinion to
be best for a particular child—and why.
The data I presented, which unfortunately, are spoken of
by Maureen—without direct knowledge, are a bit more complex. The report suggested that subject
pre-treatment characteristics such as diagnostic severity (i.e., AD vs. PDD,
NOS), initial IQ measures, and parent participation in treatment were strong
predictors of outcome—in addition to type of treatment received.
If Maureen is mad because the study does not support the
idea that EIBI is the only thing that works at all for all children, I am sorry
she feels that way. IMFAR peer reviewed
the abstract. Her comments are sadly divisive and confusing, especially for
parents in the throes of trying to decide what to do, based on their child’s
individual learning style.
Bryna Siegel, Ph.D.
Director, Pervasive Developmental Disorders Clinic, Langley
Porter
Psychiatric Institute University of California, San
Francisco
San Francisco, California 94143-0984
* * *
Asperger’s: Information and Advice
The Oasis Guide to Asperger Syndrome: Advice, Support,
Insights and
Inspiration,” by Patricia Romanowski Bashe and Barbara L.
Kirby. Crown
Publishers, $27.50
[By David Corcoran.]
http://www.nytimes.com/2001/11/13/health/children/13BOOK.html?searchpv=nytTo
day
As recently as a decade ago, this was a fairly typical set
of responses to a child with the odd constellation of behaviors caused by Asperger
syndrome, a neurological disorder:
The preschool teacher, noting the boy’s refusal to sit in
a circle and his obsession with electrical outlets and switches, suggested
there might be learning problems.
The pediatric neurologist said he had attention deficit
disorder. A psychologist thought he needed behavior modification.
The psychiatrist hired by the local school system thought
he was autistic and darkly suggested that he might be better off in an
institution.
And the parents — my wife and I — felt bewildered,
frightened and alone.
If only we’d had this book. While hardly the first to deal
with Asperger’s — a disorder so widely chronicled in recent years that it threatens
to become a fad diagnosis — it is surely one of the best.
Asperger syndrome is thought to be a form of autism.
Though it was first identified in 1944, few Americans had even heard of it
until 50 years later, when it was finally listed in the American Psychiatric
Association’s diagnostic manual — a surprising time lag, considering that
experts now think it occurs in 1 out of 250 to 500 people, or at least half a
million Americans.
The authors of this book are not specialists, except in the
sense that my wife and I are: each has a son with Asperger’s, which strikes
boys at a rate 4 to 10 times as high as the rate in girls. But with prodigious research
and the help of their six-year-old Web site for parents, Oasis (for Online
Asperger Syndrome Information and Support, at www.aspergersyndrome.org),
they have assembled a remarkable amount of information and presented it in such
a levelheaded, clear-eyed manner that their guide could be a model for any
self- help book.
Asperger’s is characterized by social awkwardness, extreme
literal-mindedness and, most conspicuous, a pedantic, talky fixation on arcane
topics — Pokémon, dinosaurs, train schedules — often to the exclusion of nearly
everything else. It was this trait that led Hans Asperger, the Viennese
psychiatrist who first identified the disorder, to call it “little professor”
syndrome. On paper, it sounds harmless, quirky, even vaguely charming.
But the “Oasis Guide” is admirably free of sugarcoating
and inspirational cant. In response to those who call Asperger’s a mild form of
autism, they quote a mother who tartly points out, “My son doesn’t have mild anything.”
As they write, in perhaps the book’s most crucial sentence, “It is important to
remember that Asperger syndrome is a serious, lifelong disability that requires
individualized expert intervention and should be treated as such.”
With help, children with the syndrome can grow into
successful adults, though there are few if any studies to indicate how many do
so. The book is very good on what interventions are available and how parents
can go about finding them. It devotes chapters to medications, which cannot
cure Asperger’s but may be effective against related disorders, like attention deficit
and depression; dealing with school authorities, who are required by federal
law to provide appropriate services to every child with disabilities; and
teaching social skills — which, as the authors point out, are the best
predictors of success as an adult.
Among other things, the book is testimony to the power of
the Internet to organize isolated, information-starved people into a community.
The Oasis Web site has had more than a million visits, and much of the good
advice in the guide comes from the parents — and adults with Asperger syndrome,
who proudly call themselves Aspies — who flock to its message boards to tell their
stories about schools, doctors, drugs and encounters with the “neurotypical”
world.
Ultimately, these stories are not discouraging but
reassuring, for they make clear that no Asperger’s parent is alone. Every child
is different. But every infuriating misdiagnosis, every uncaring (or caring) school
official, every setback, every gain finds an echo in the experiences of the
hundreds of people whose contributions make this book such a rich and human
document. “When the shock wears off, and it will,” a parent writes about first
receiving the Asperger’s diagnosis, “you will realize that this is the same
child you have nurtured and loved since birth.”
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* * *
Schools Cope With Growing Number Of Autistic Children
Shortage of trained teachers hinders efforts
[By Kristen Go in The Arizona Republic. Thanks to
Theresa Cedillo.]
http://www.arizonarepublic.com/news/articles/1112autism12.html
When 6-year old Geoffrey Gunkel went to kindergarten, he
bit the teacher and hit the other kids. Like hundreds of other autistic kids in
public classrooms, he needed special attention.
The number of Arizona children diagnosed with autism has
mushroomed 255 percent in just four years, creating a growing challenge for the
state’s schools.
Administrators can’t find enough teachers trained to work
with autistic children, and the special programs are expensive, about $15,000 a
year per child.
The problem is especially great in Maricopa County, home
to about 60 percent of the 1,213 children identified with the neurological
disorder.
Autism affects social development and communication.
Autistic people often don’t maintain eye contact. The sound of a fan can so jar
them that it can cause them to scream. No one knows the cause, or has a cure.
“Of all the disabilities, this is the toughest,” said
Dinah Jones, preschool speech and language pathologist with the Washington
Elementary School District.
Geoffrey Gunkel boards the bus at 7 a.m. to start a
30-mile, two-hour ride from his Chandler home to a Glendale school.
Donna and Jim Gunkel wish they could find a place closer
to home that met their son’s needs.
Geoffrey, who was diagnosed with autism when he was 2*
years old, had been in a preschool class with special-needs and mainstream
children.
His parents hoped he would be placed in a kindergarten
class for autistic children. But Chandler Unified School District had none at
the time, so he was placed in a regular classroom.
There, he hit and bit teachers and other children, so he
was sent to the Children’s Center for Neurodevelopmental Studies in Glendale,
where the specialty is autistic children.
Geoffrey, who has been there since the beginning of the
school year, is already making progress, his parents said. He has nearly
stopped grinding his teeth.
His vocabulary is still limited to “I want” phrases and
food items such as “Popsicle” and “banana,” but his communication is improving.
He expresses himself through cards depicting actions or items.
His school has adapted its classes to address some pupils’
sensory issues. For example, Geoffrey’s class doesn’t use many overhead lights;
they’re too stimulating. A large corner of Geoffrey’s classroom is dedicated to
quiet time, when Geoffrey can sit on a mattress and suck his thumb while taking
breaks. During sensory time, his arms are wrapped with ACE bandages to soothe
him.
The progress he’s making comes at a cost.
Private programs such as the Children’s Center can
charge anywhere
from $20,000 to $30,000. School districts receive about
two-thirds of the funding from the state and federal government, the rest is
paid by the district.
“I just want to see him talking and communicating. I think
when that happens, I won’t have to worry about him so much,” his mother said.
But the Gunkels feel like they’re working against the
clock.
If children with autism don’t develop speech by the
age of 8, they
most likely never will be able to communicate the way most
people do.
The Gunkels don’t know how much longer Geoffrey will stay at
the Children’s Center. His stay will depend on whether he has met his developmental
and academic goals and can return to school or if he will need specialized
services.
“He’s finally coming out of his shell,” Donna said. “It’s
almost at the point where we have to grab him now or we’ll lose him.”
As school districts try to find ways to work with autistic
children, they’re finding it increasingly difficult to find trained educators.
“We’re finding there’s not a lot of college programs that
are training people on how to teach autistic kids,” said Roger Kutemeier,
director of special education for Mesa Unified School District.
Sheri Dollin, a consultant with the Southwest Autism
Research Center, visits schools throughout the Valley to help train teachers
and aides.
“There’s so much you need to do to adapt the curriculum to
address sensory and communication issues,” she said. “It’s like choreographing
a dance. Everybody has a role and it’s difficult trying to get everyone to understand
their role without compromising the needs of the student.”
Some districts have sent special education teachers to the
University of North Carolina, to learn a specific teaching method called
TEACCH, Treatment and Education of Autistic and related Communication
handicapped Children. It emphasizes organizing the classroom, developing
individual schedules, setting clear goals and using visuals.
The Washington Elementary and Scottsdale Unified school
districts have implemented these teaching methods in classrooms specifically
designed for autistic children.
In 1996, Washington Elementary was one of the first
districts to offer a TEACCH class in the state.
The program is at John Jacobs Elementary School in
Phoenix.
Thirty-one students participate at an annual cost of
$750,000.
The classes are divided by age level and there is a
ratio of five to
eight students to every teacher.
Each classroom also has two to three instructional aides and
speech and occupational therapists.
In TEACCH classrooms, each student has a cubicle designed
for individual work. Each student gets one-on-one time with teachers.
Time is also built in for group activities.
Socializing is difficult for autistic children.
Group time may involve several children wearing a
weighted vest or
sitting in a “hug chair,” which is draped with two long,
weighted arms that can be wrapped around a child to calm him or her.
Each classroom also has a “sensory area” where items vary
according to age. In the kindergarten classroom, children are swung on a
hammock while they hold a pillow. Older children have a therapy ball, blue
gymnastic mats and a beanbag.
Because many autistic children are not social, horseplay
isn’t much of a problem. Noise is kept to a minimum and each student has a
daily schedule that can be a list of pictures or words.
As districts and the state try to better prepare for the
growing number of autistic children, their parents struggle to ensure they get
a quality education.
“Every day I fight for my son to get a good education,”
said Linda Gasten, whose 11-year old son is autistic.
Her son, James Edgar, has been bounced around as she and
educators tried to find the right classroom environment.
Edgar started in an integrated preschool, then
mainstreamed in kindergarten, then spent first grade in a private school. Now
he is in a class for autistic children in the Scottsdale Unified School
District.
Seven years ago, Gasten started a support group with four
other people. Now, 30 to 50 members attend monthly meetings.
“That’s really how you survive, is getting to know other parents
with kids with autism,” Gasten said.
Members share their expertise with the newer parents, who
aren’t sure what they need to do. Gasten said one of the most common problems
is parents’ fear of attending meetings to discuss the child’s Individual Education
Plan, which the state mandates for each special education student.
“It’s not the teachers and the aides of kids, it’s often
not even the principal, it’s the administration who says basically ‘This is
what we do, this is what we offer.’ They’re basically cutting the process off
before you start it,” she said.
Gasten said schools are doing a better job of trying to
deal with autistic children, but they have a long way to go.
Janet Kirwan, director of family services for the
Southwest Autism Research Center and a mother of an autistic child, agrees.
“This is a relatively rare disorder,” Kirwan said.
“A lot of districts thought, ‘Why would I spend a lot
of training on
this?’ I think we’re seeing a movement toward education and
getting better programs, and I think parents are forcing that on the schools.”
* * *
Looking for vitamins that can be absorbed into the skin or a
great
compounding pharmacist.
My 10 yr old autistic son will not swallow pills of
any kind. I would
love to try the enzymes but don’t know how I will get
those down him. Does
anybody have any experience with this problem?
Does anybody know why most of autistic kids have serious
dental problem like cavity, gum disease etc. My son needs a lot of dental work
but not comfortable with general
anaesthesia requirement. Any other
suggestions?
Gastroenterologist Dr. Timothy Buis today pooh-poohed the
DAN protocol and
stated that the only reason to keep a child on the GFCF diet
was if he is a
celiac. This is going to cause my 7 year old PDD-NOS son
problems. My son’s
father attended the appointment. He does not believe in the
diet. I have had
a GAL appointed by the court to ensure he follows the diet.
I need the name
of a DAN gastro in the Boston area to do damage control.
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