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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Monday December 10, 2001
INDEX:
* Better to give
than to receive
* Studies Fail To Disprove Autism Link To MMR Jab
* Evidence-Based Medicine
* Plumsted BOE reviews autism program
* The Nose Knows: How the Olfactory Influences Conduct
* TOTS,
or Tracking Our Toddlersâ ™ Shots,
* Geiger is top human services student
******************************
Better to give than to receive
Updated: Fri, Dec 07 12:00 PM EST
By Sarah Payton
Indiana Daily Student
Indiana U.
(U-WIRE) BLOOMINGTON, Ind. -- Mary is 19 years old. Battling autism, her mental
capabilities are that of a 6-year-old. She is stuck in the second grade, where
she has been for the past two years. I try to show her how to put together the
same pattern of blocks over and over again, and as she does her very best we
start to talk about Christmas. I ask her what she wants from Santa and after
only moments of deliberation she announces with an innocent grin that all she
wants for Christmas is for me to get all the presents I want for Christmas. She
already has her robotic dog and she would rather that I get a new car, the one
that I showed her in the magazine at lunchtime. With the mentality of someone a
third my age, Mary smiles at me with an innocence I haven't had in years. She
reminds me of the real message behind the holiday season. This was four years
ago, and not much has changed in the way I view the holidays since my meeting
with Mary. Although I try to have the Christmas spirit, so much of my true
spirit is consumed with arguing with my mom about the price of a David Yurman
bracelet that I just have to have. On the heels of Sept. 11 you'd think as a
nation we would all turn to giving rather than receiving... if only it were so
simple. A society of consumers who need and want and just have-to-have, even a
national tragedy can't shake most of us from the mindset that we must have the
best presents under the tree or beside the menorah. Less than two hours ago I
sent my mom an updated list of what I wanted with no intention of donating a
portion of the money that she will spend to a family in New York or the local
Red Cross or United Way. This mentality carries over into other aspects of life
as well. Listening to a guest speaker from the Opportunity House (a local
Goodwill organization) in a journalism class, I realized how sick it is when I
take clothes to Plato's Closet for $10 for five pairs of Gap jeans when I could
donate it all to an organization that has people who depend upon it. Is the $10
really that important to me? The answer to that is: it can't be. There is more
to life than having a new leather jacket or an X Box. There are families
without fathers, mothers, sisters and brothers on this holiday and now is the
time to donate in remembrance of those lost. It doesn't matter if you are a
poor college student like I am, with thousands of credit card bills, give what
you can, how you can. If you can't donate money, donate time or a service; this
is just as valuable. Spend a few hours at a local shelter; realize how stupid
it is for you to complain about only getting two little blue boxes from
Tiffany's this year. If there is no other time you ever give, give now. It is
only, afterall, when you truly give that you can receive. And receive you will,
a thousand times over. (C) 2001 Indiana Daily Student via U-WIRE
http://news.excite.com/news/uw/011207/university-128
******************************
Studies Fail To Disprove Autism Link To MMR Jab
[By
Lorraine Fraser in today's Sunday London Times.]
http://www.portal.telegraph.co.uk/news/main.jhtml?xml=%2Fnews%2F2001%2F12%2F
09%2Fnjab09.xml <-- address ends here.
A report commissioned by the [British] Government
has concluded that
the possibility of MMR vaccination causing autism in susceptible children
cannot be ruled out on the current evidence.
The review, from the Medical Research Council,
will say the theory
that the triple measles, mumps and rubella jab is to blame in some autistic
children has not been proved scientifically.
However, it will add that epidemiological studies
so far of MMR have
been too imprecise to rule out the prospect of the vaccination being
involved in a small number of cases.
The findings, to be made public next week, will
create difficulties
for Alan Milburn, the Health Secretary, who asked the MRC last March to look
at all available evidence on the causes of autism and identify any gaps in
present knowledge.
His officials at the Department of Health have
heavily publicised
studies that failed to link MMR and autism in their attempts to convince
parents there is no risk.
The MRC's report comes after The Telegraph
revealed how the doctor who
first voiced fears about the safety of MMR, Dr Andrew Wakefield, has been
forced out of his job at the Royal Free and University College Medical
School in London.
Dr Wakefield claims to have identified nearly 200
children with a new
combination of bowel disease and autism and has pledged to continue his
efforts to find out whether their double illness has been triggered by the
childhood injection. He disclosed last weekend that his university employers
had asked him to leave because his research was unwelcome.
The Department of Health insists parents have no
need for concern over
the safety of MMR (recommended for babies and four-year-olds) and officials
have accused Dr Wakefield of needlessly damaging parents' confidence in the
vaccination, leaving children at risk of the illnesses.
However, the report of the MRC Review Group,
headed by Eve Johnstone,
professor of psychiatry at the University of Edinburgh, will raise new
questions as to why the doctor has been ostracised by the medical
establishment.
While it offers no support for Dr Wakefield's
theory that measles
virus from the MMR vaccine may colonise the gut of susceptible children and
cause bowel effects which result in a chemical imbalance, leading to autism,
The Telegraph understands the report will nevertheless make clear that more
research is needed before the hypothesis can be either confirmed or refuted.
The document, which has been sent to the
Department of Health prior to
publication, is expected to argue that the cause of autism may differ
between individuals, and future research must try to take account of factors
such as genetics, environmental exposures before and after birth,
infections, and the development of the child's immune system.
In particular, it will take issue with a Finnish
study of three
million children which has been widely reported as proof that MMR does not
cause bowel disease or autism.
The MRC conclusions agree with a report from the
Institute of Medicine
in the US, which backed the use of MMR but also said research so far could
not exclude the possibility that MMR may be damaging some youngsters.
Dr Timothy Buie, a specialist at Harvard General
Hospital, has also
announced that he found inflammation of the bowel identical to that
described by Dr Wakefield in 15 of 89 autistic children seen at his
Massachusetts clinic.
He said: "These children are ill, in
distress and pain, and not just
mentally, neurologically, dysfunctional."
Dr Wakefield's departure from the Royal Free
Hospital has devastated
parents of children involved in his studies, who are demanding assurances
that their youngsters will continue to be looked after by the north London
hospital.
Dr Wakefield agreed to stand down after a
two-year struggle to stay in
his post, hoping that this would relieve the "political pressure" on
clinical colleagues responsible for day-to-day care of the sick children.
Paediatric gastroenterologists at the Hampstead
hospital have
developed considerable expertise in relieving the children's bowel pain and
related symptoms, but some sick children are having to wait up to 18 months
to be seen.
Last week angry families established a lobby
group, Autism Research
Campaign for Health (ARCH), to push for greater recognition of their
children's problems.
******************************
Evidence-Based Medicine
"Some experts estimate that only 20 percent of
medical
practices are based on rigorous research
evidence."
[ By Jack Hitt.]
http://www.nytimes.com/2001/12/09/magazine/09MEDICINE.html
When visiting our family doctor, most of us feel secure in
the belief
that modern science has purged medicine of such practices as cupping and
bloodletting. But according to a recent article in the journal Patient Care,
"Some experts estimate that only 20 percent of medical practices are based
on rigorous research evidence." The rest are based on what has been
published in books repeatedly without independent testing – or what doctors
have always said should work. In other words, it’s a kind of folklore.
A revolution is erupting in the wards of
practical medicine these
days, one defined recently by The British Medical Journal as "the
conscientious, explicit and judicious use of current best evidence in making
decisions about the care of individual patients." The revolution is called
evidence-based medicine, or E.B.M., and many traditional treatments are
being run through the machinery of the scientific method – and being found
wanting.
One common E.B.M. approach is meta-analysis:
collating data from
far-flung studies to come up with a definitive answer to a medical question.
Such studies are overthrowing some conventional wisdom. Mammogram
screenings? They don’t save lives. Remember the placebo effect? It doesn’t
exist. E.B.M. is also credited with validating some simple cures. Most
people know that if you have a heart attack, you should immediately take an
aspirin. Thank an E.B.M. study for proving that this works.
After colds, the second-most-common reason for a
visit to the doctor
is lower-back pain. The "treatment" has always been bed rest. Why?
Because,
as a recent article explained, "The notion that rest is therapeutic and
will
relieve pain dates back to Hippocrates." But now that E.B.M. studies have
used science instead of oral tradition to test this notion, they have found
that bed rest "may delay return to functional status." What works
better?
Light exercise and getting back on your feet. This past June, the Agency for
Healthcare Research and Quality integrated the no-bed-rest approach into its
guidelines. This new standard of care, which will probably save billions of
dollars in unnecessary sick leave, marks the end of 2,400 years of misguided
treatment.
E.B.M. is yet another idea that can be credited
to the computer
revolution. Doctors have long known that they learn very little after med
school when their exhausting schedules and the baffling profusion of 4,000
monthly professional journals make it nearly impossible to keep up with
innovations in treatment. The E.B.M. movement began when six doctors in
Canada came up with the idea of skimming the most dependable studies and
crunching the results into an accessible, reliable database.
Indeed, in the wake of E.B.M., journals are filling with terms that
sound almost anthropological to describe longstanding treatments: "local
custom," "witch-doctoring," "myth." Or as one article
this fall put it,
"This process of examining beliefs that have been based primarily on
teaching and empirical experience rather than evidence has been compared to
stripping the curtain away from the Wizard of Oz to reveal an ordinary man.
******************************
Plumsted BOE reviews autism program
By Bob
Vosseller December 07, 2001
Plumsted Board of Education members and parents heard a presentation
regarding the district's autism program by parents of autistic children and
from the teacher who heads the program during its last Board session.
Carl Krushinski the coordinator of special services in the district introduced
Susan Rodriguez who along with parents Wendy Sample, and Vicki Molokie
explained the progress of the district's full day preschool disabled class.
"I didn't know what it was when my son was diagnosed," Mrs. Sample
said prais
ing the program. She explained that Autism is a complex developmental
disability that typically appears during the first three years of life. The
result of a neurological disorder that affects the functioning of the brain,
autism and its associated behaviors have beenestimated to occur in as many as
one in 500 individuals according to the Centers for Disease Control and
Prevention 1997.
The condition impacts the normal development of the brain in the areas of
social interaction and communication skills. Children and adults with autism
typically have difficulties in verbal and non-verbal communication, social
interactions and leisure or play activities.
There is more than one type of Autism.
Autistic Disorder is an impairments in social interaction, communication and
imaginative play prior to age 3.
Asperger's Disorder is another type and is characterized by impairments in
social interactions and the presence of restricted interests and activities,
with no clinically significant general delay in language and testing in the
range of average to above average to above average intelligence.
Pervasive Developmental Disorder - not otherwise specified or PDD-NOSS groups
several related disorders under this broad heading. A diagnosis of PDD-NOS may
be made when a child does not meet the criteria for a specific diagnosis, but
there is severe and pervasive impairment in specific behaviors.
Some quick facts about Autism are that it occurs in one in every 500 births and
in a rate of five boys to every girl.
Autism is the third most common developmental disability following mental
retardation and cerebral palsy and it is more ommon than multiple sclerosis,
cystic fibrosis or childhood cancer.
Many children are making normous strides and a significant number are no
indistinguishable from their peers.
"Things that children just do and which we take for granted, they don't
do. We help them with their play skills. We use positive behavior renforcement
using physical and verbal prompts. When you come into one of our classrooms you
see lots of food, TV and computer games. All are used as motivation,"
Rodriguez added.
The teacher said that "We link things toward what they are motivated
about. Our teachers have gone to many workshops." The teacher attended a
workshop called Teaching Verbal Behavior: Hands on Training for Tutors and
Therapists, at Georgian Court College on December 4 and 5. Registration cost
was $395.
Rodriguez and the parents present explained that the full day preschool program
is important because research indicates that as a result of early diagnosis and
intensive intervention, many children are making enormous strides and a
significant number are now indistinguishable from their fellow students.
The district's program integrates several ideologies and theories using the
best from each and applying them to each child.
Instruction is also individualized to support each child's strengths and to
work on each student's weaknesses. The students progress at their own rate and
are able to transition to other programs/kindergarten when ready.
"It benefits to have a student in an in district program," Sample
added stating that adjustments to the child's program can be made more easily
if the student is not sent out of the district.
It was also explained that the in-district program is more cost effective than
sending students outside the district. The annual program costs for an
out-of-district school range from $45,000-$75,000 per child.
The in-district program has greatly reduced transportation costs and when
children are ready to transition out of the full day class the can take
advantage of programs already in place within the district
"I thought (my son) was a late bloomer. Then I called early intervention
and later got the diagnosis. For awhile we were morning the hope of raising a
normal child. At age 3 he was diagnosed with PDD. At that point (his problem)
had a name and we had some direction," Molokie said.
"The frightening thing is I didn't know what to do. Right now (Kevin) is the
happiest he's been since birth. He's definitely more verbal. We attend church
as a family, he answers some personal questions and is above age level in some
areas. He is ransitioning well into music class and now he can listen to
"no."
"We noticed he also separates from family members more easily and follows
some simple directions and has more interest in other children,"Molokie
added.
"These are children who if left alone would just sit there and not
interact," Rodriguez said.
"Wendy's son Scotty grabbed me to introduce himself. That may not sound
like much but it is actually a social break through," Krushinski said.
Sample added that "we have taken calls from people who have questions
about what to do. (Superintendent) Dr. (Gerald) Woehr told us how we as parents
could help get attention (and stress the importance of continued state and
fedral funding) to programs like this. I've already gotten an e-mail back from
a Senator."
Board President Herb Marinari said, "it shows us the diversity of our district.
We have great kids and great educators."
Board members announced the return of the district's "Giving Tree"
program which is offered through the schools to help local families
experiencing financial hardship to make their holidays more enjoyable. Gift
tags are listed with only the item that is requested from the family (such as a
winter coat, size 8, for a girl). Last year, through the help of different
organizations, the program was able tohelp 44 families in need. Anyone or any
organization interested in participating this year should contact the New Egypt
Middle School at 609/758-6900 x 31.
Approved during the evening was a resolution which authorized an increase in
appropriations for the 2001-2002 school year. Last May the Board refunded a
portion of its $10,699,000 bond issuance of April 15, 1993. The refunded
issuance of $6,120,000 has been escrowed with First Union Bank and the board
needed to increase its appropriations for debt service to pay the principal and
interest due on the refunded issuance and such increase is offset by an
increase in estimated revenue anticipated from the investment earnings of the
issuance being held in escrow.
The interest is $255,980.90, the principal is $50,000 and the total is
$305,980.90 The bond interest is $321,970.
©New
Egypt Press 2001
http://www.zwire.com/site/news.cfm?newsid=2751610&BRD=1688&PAG=461&dept_id=41629&rfi=6
******************************
The Nose Knows: How the Olfactory Influences
Conduct
Researchers start to uncover how the sense of smell is involved in complex
behaviors
By
Jennifer Fisher Wilson
Editor's Note: This is the final installment of a five-part series on the
senses.
Graphic:
Lisa Damiani
True
to legend, a bloodhound can track someone for miles just by keeping its nose to
the ground; that proximity makes it all the easier to smell foot sweat. Akin to
a molecular thumbprint, sweat is a cocktail of different odorants, and
bloodhounds are particularly adept at discerning the unique mixture of
isobutyric acid and isovaleric acid molecules. Their sensitive noses have
olfactory acuity that is 100 to 1,000 times greater than humans.
Nearly all mammals have a more sensitive sense of smell than humans. In rats,
for instance, smell is almost equivalent to face recognition in people, says
neurobiologist Larry Katz from Duke University. Simply by smell, he says, they
can tell whether another rat is male or female, from the same family or another
species.
To See Thw Rest of the story:
http://www.the-scientist.com/yr2001/dec/research_011210.html
******************************
What is TOTS?TOTS, or Tracking Our Toddlers’ Shots, is an immunization
record sharing system developed by the Illinois Department of Public Health
(IDPH). The system allows public and private health care providers to share the
immunization records of Illinois residents. Currently, the system contains more
than 12 million shot records.Besides keeping track of the shots a child has
already received, TOTS forecasts immunization due dates based on the nationally
recognized “Recommended Childhood Immunization Schedule.” These recommendations
are approved by the Advisory Committee on Immunization Practices, the American
Academy of Pediatrics and the American Academy of Family Physicians.What is
TOTS for?TOTS is designed to help health care providers record, track and
report their patients’ immunizations. Participation is voluntary. The registry
allows physicians to access patient records for information about immunizations
administered outside their practices.What is the goal of TOTS?The
primary goal of TOTS is to increase the immunization coverage level of
Illinois’ 2-year-olds to 90 percent. In 1999, approximately 78 percent of
Illinois’ 2-year-olds were properly immunized, according to a National
Immunization Survey.While this goal focuses on 2-year-olds, keep in mind that
patients of all ages can be included in the TOTS system.How does TOTS work?TOTS
users can exchange data with the statewide registry in one of three ways:
Electronic data interchange (EDI)
Voice response system
TOTS computer program EDI allows the sharing of electronic data in a structured
format between computer systems. It lets health care facilities with their own
immunization tracking systems to share information with TOTS.By using the voice
response system, non-computer users can access TOTS patient information and
update the statewide registry. This system may also be the ideal choice for
sites that administer a low volume of immunizations. Callers use the keypad of
a touch-tone telephone to request information on a patient. The system can read
the requested information over the phone or it can fax the patient’s
immunization history or school physical form to the caller. The caller then can
fax updated immunization history back to TOTS. By using character recognition
and bar code technology, the system can automatically process the form and
include the data in the statewide registry. The TOTS computer program is the
system’s most robust component, allowing health care providers to collect,
store, analyze and report immunization data at individual sites. A modem allows
a site to dial into the statewide registry to share immunization
information.Here are the main features of the computer program:
Calculation of immunization due dates
Print option for school physical form and patient immunization history report
Remind/recall feature to track and notify patients of due dates
Recording of patient contraindications, adverse reactions or immunities
Assessment of immunization coverage levels for a practice What about
security and patient confidentiality?TOTS is designed to protect patient
confidentiality and to provide access to statewide registry information. This
balance is maintained by several security controls.Open access to the statewide
registry is not allowed. Only registered TOTS users have access to the data and
information is available only on a need-to-know basis. In other words, a TOTS
user cannot browse through patient records. Specific name or ID search criteria
must be used to access information in the statewide registry.An audit log at
the statewide registry tracks all updates to patient records and which TOTS
user made each update. In addition, a site can only produce reports for its
patients.What kind of equipment is needed to operate TOTS?A computer
needs at least 200 MB of free space and 32 MB of RAM (memory) to install and
run TOTS. Additional RAM will provide more optimum performance of the software.
TOTS can operate in a Windows® (95 or 98) or NT environment. You also must have
access to a CD ROM drive to install TOTS.A modem (33.6Kbps) is necessary to
connect to the statewide registry. You also will need dial- up networking
capability to connect to the statewide registry via modem. Keep in mind that
each patient you save is stored in your local TOTS system. Therefore, you do
not need a continuous connection to the statewide registry during the workday.
The modem connection is only necessary when you share information with the
statewide registry or when you search the statewide registry for a patient.What
if a patient does not want to participate in TOTS?A patient, or a child’s
parent or guardian, must give consent to be included in the statewide registry.
If consent is not given to participate in the statewide registry, the patient
can still be included in your local TOTS system. However, this patient’s
information will NOT be shared outside your local system.Keep in mind that any
patient, of any age, can be included in your local TOTS system, thereby
allowing you to use the system’s tracking and reporting capabilities.How do
I register to use TOTS?Contact the Illinois Department of Public Health if
you would like to register for the voice response system or for the computer
program. License agreements and other registration materials will be sent to
you to complete and return. IDPH will then send you the ID and password
necessary for your site to access TOTS. Computer program sites also will
receive an installation CD-ROM and training video.If you would like to register
for TOTS or if you have questions, please call the Department’s help desk at 800-942-0024
(TTY for hearing impaired use, 800-547-0466). Staff are available 8 a.m. to 5
p.m., Monday through Friday.
Illinois Department of Public Health
535 West Jefferson Street
Springfield, Illinois 62761
Phone 217-782-4977
Fax 217-782-3987
TTY 800-547-0466
http://www.idph.state.il.us/health/infect/totsfs.htm
******************************
Geiger is top human services student
In addition to her studies at Syracuse University, Geiger is a job coach for
Enable
Jennifer Geiger of Rochester, a recent graduate of Cazenovia College, was
honored as the nation's Outstanding Human Services Student for 2001 by the
National Organization for Human Services Education.
She was also selected to receive the organization's David Mahoney Scholarship.
Geiger and one of her Cazenovia professors, Dr. Mary Handley, director of the
human services program at the college, traveled to NOHSE's national conference
in Indiana in October to receive the award.
Geiger, who holds a bachelor of science degree in human services from
Cazenovia, is pursuing a master's degree in rehabilitation counseling at
Syracuse University. In addition to her studies, Geiger is a job coach
for Enable, assisting people with disabilities, teaching them job skills and
helping them to become independent.
While studying at Cazenovia College, she was a live-in companion for a person
with a disability.
Handley, who nominated Geiger for the award, said Geiger is "an ideal
candidate for the award. She is not only studying in her chosen field, but also
contributing to it in her daily life."
Geiger was president of the college's Human Services Club, a peer tutor, a
residential habilitation provider for a woman with autism, and presenter at
several disability conferences. She received Cazenovia College's Dr. John S.
and Enid Morris Endowed Scholarship and was named Cazenovia College's
Outstanding Student in Natural and Social Sciences.
Nominees for the National Human Services Student Award must be members of the
National Organization of Human Services Educators, have at least a 3.5 grade
point average, have demonstrated a dedication to the field of human services
over the past four years, have been a role model for other students and have
values and ethical perspective matching those of NOHSE.
The equestrian team drew Geiger to Cazenovia College because of her interest in
riding, but in spite of her love for horses, she wanted to find another field
for her major. She liked what she saw in the human services program and when
Dr. Handley became the director of the program, Geiger knew she had found her
niche.
"I often wonder where I might be now if it wasn't for her," Geiger
said. "Her guidance got me where I am, and I love what I'm doing."
The National Organization for Human Services Education (NOHSE) was established
in 1975 to unite educators, students, practitioners and clients with the goal
of preparing future human services workers. Human services workers focus their
energies on helping their clients meet basic human needs and remediate existing
problems, as well as advocating for change in the systems that affect the lives
of their clients. One of the major goals of NOHSE is to "foster excellence
in teaching, research, and curriculum development" to improve the education
of human service workers.
©Cazenovia
Republican 2001
http://www.zwire.com/site/news.cfm?newsid=2742590&BRD=1001&PAG=461&dept_id=171286&rfi=6
******************************
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