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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Saturday December 8, 2001
INDEX:
* House and Senate
Elementary and Secondary Education Act
* IA Senator Harkin Meets
Regarding IDEA mandatory full funding
* Over 300 parents, advocates, school administrators, teachers, and
related services personnel attended the IDEA Regional Forum held in
Washington
* H.R.3295 falls way short of the real
reform needed
* The Treatment of Neurologically Impaired Children Using Patterning
(RE9919
* Adverse Outcomes Associated with
Postpartum Rubella or MMR Vaccine
* Parent Letter Regarding DR Wakefield
* Parent Letter Regarding DR Wakefield sent to Royal Free Hospital
******************************
House and Senate Elementary and Secondary Education Act (ESEA) conferees
rejected a compromise offer authored by Sen. Tom Harkin (D-Iowa) regarding IDEA
mandatory full funding. Responding to Republican concerns that IDEA full
funding not be approved until IDEA was "reformed," the Harkin
compromise would have had the mandatory full funding take effect after the
Congress reauthorizes IDEA (scheduled for next year) or FY 2003, whichever
comes sooner. Republicans now object to giving IDEA funding entitlement
status. ESEA conferees are scheduled to meet tomorrow (Tuesday).
Sen. Harkin may formally offer his amendment at this markup session.
Democrats are also considering adding the IDEA funding proposal to other
pending legislation as the legislative calendar for 2001 dwindles.
******************************
Sen. Tom Harkin and several other
Democratic ESEA conferees held a press conference/rally attended by
representatives of The Arc to press for passage of the IDEA mandatory full
funding.
******************************
Over 300 parents, advocates, school administrators, teachers, and related
services personnel attended the IDEA Regional Forum held in Washington, DC.
Office of Special Education and Rehabilitative Services Assistant
Secretary Robert Pasternack listened as almost 100 individuals presented
testimony on the strengths and weaknesses of IDEA in preparation for next
year's scheduled IDEA reauthorization.
******************************
Roll Call, Capitol Hill's newspaper, wrote an extensive article on the
disability community's opposition the House bill on election reform sponsored
by Reps. Bob Ney (R-Ohio) and Steny Hoyer (D-Md.). H.R.3295 falls way
short of the real reform needed to assure effective voting access for people
with disabilities. This article was followed by an editorial siding with
the disability community on this legislation. Consideration of this bill
will likely take place next year.
******************************
The
Treatment of Neurologically Impaired Children Using Patterning (RE9919)
AMERICAN
ACADEMY OF PEDIATRICS
Committee
on Children With Disabilities
ABSTRACT. This statement reviews patterning as a treatment for children with
neurologic impairments. This treatment is based on an outmoded and
oversimplified theory of brain development. Current information does not
support the claims of proponents that this treatment is efficacious, and its
use continues to be unwarranted.ABBREVIATION. AAP, American Academy of
Pediatrics.Patterning has been advocated for more than 40 years for treating
children with brain damage and other disorders, such as learning disabilities,
Down syndrome, cerebral palsy, and autism.1-5 A number of organizations have
issued cautionary statements about claims for efficacy of this therapy,6-10
including the American Academy of Pediatrics (AAP) in 1968 and 1982.3,11 Media
coverage,12 inquiries from parents and public officials, the use of alternative
forms of treatment by parents for their children,13 and the existence of a new
generation of pediatricians who may be unaware of the programs that involve
patterning have prompted the AAP to review the current status of this controversial
treatment.Patterning is a series of exercises designed to improve the
"neurologic organization" of a child's neurologic impairments. It
requires that these exercises be performed over many hours during the day by
several persons who manipulate a child's head and extremities in patterns
purporting to simulate prenatal and postnatal movements of nonimpaired
children.14 Concern about patterning has been raised because promotional
methods have made it difficult for parents to refuse treatment for their children
without questioning their motivation and adequacy as parents.3 Moreover, dire
health consequences for children are implied if parents do not make
arrangements to have their child begin patterning.Several treatment options are
offered, ranging from a home program to an intensive treatment program, which
states that each succeeding option "offers greater chance of
success." Participation in the intensive treatment program requires
completion of 3 of the 5 preceding programs, is by invitation only for the "most
capable families," and potentially could deplete substantially a family's
financial resources. The regimens prescribed can be so demanding,
time-consuming, and inflexible that they may place considerable stress on
parents and lead them to neglect other family
members.15,16(pp251-252)Patterning programs use a developmental profile
designed by the Institute for the Achievement of Human Potential both to assess
a child's neurologic functioning and to document change over time.16(p40)17
However, the validity of using this profile for these domains has not been
demonstrated, nor has it been compared with currently accepted methods of
measuring a child's development. In addition to making claims that a number of
conditions may be improved or cured by patterning, proponents of the program
assert that patterning can make healthy children superior in physical and
cognitive skills.18-22The aims of treatment programs include attainment of
normality of physical, intellectual, and social growth in children with brain
injuries. According to providers of patterning therapy,1 the majority of
children treated are claimed to achieve at least 1 of those goals. To our
knowledge, however, no new data have been presented to support the use of
patterning since the AAP reissued its policy statement in 1982. The lack of
supporting evidence for the use of this therapy brings into question once again
its effectiveness in neurologically impaired children.
To Read The Full Story:
http://www.aap.org/policy/re9919.html
******************************
Adverse
Outcomes Associated with Postpartum Rubella or MMR Vaccine
F. Edward Yazbak, MD, FAAP and Kathy
L. Lang-Radosh, MS
ABSTRACT
We identified 60 rubella-susceptible mothers who were revaccinated
in the postpartum period with either the measles-mumps-rubella (MMR) or the
monovalent rubella vaccine and whose children later received MMR vaccine.
Forty-five of these women have children diagnosed with autistic spectrum
disorder (ASD); another ten women have children with autistic symptoms,
ADD/ADHD or other developmental delays; and four women have children with other
health problems, mostly immunologic. These outcomes raise concerns about the
practice of postpartum vaccination and suggest that an immune mechanism may
increase children's susceptibility to ASD.
Background
Although parents continue to report that their previously
typical children begin to display symptoms of autism and lose previously
acquired skills after receiving routine childhood immunizations (particularly
the MMR vaccine), the medical community has tended to discount the possibility
of a link between autism and vaccination. Most medical researchers, in fact,
completely dismiss such "anecdotal evidence" as scientifically
invalid. While it is true that parents have only the observations of their own
children to rely on, there can be no closer monitoring of a child than that
done by its own parent. To ignore the information provided by parents of
autistic children as desperate conclusions drawn by grieving individuals is
pretentious and overlooks potentially valuable data.Women are routinely tested
for rubella immunity before marriage, and those susceptible are promptly
vaccinated if they are not pregnant. The Center for Disease Control and
Prevention (CDC) recommends that women be tested again at the time of their
first obstetrical visit, and that those found to lack rubella immunity be
vaccinated in the postpartum period. The vaccine manufacturer states that it
has been found "convenient" to vaccinate women in the postpartum
period, but adds that "caution should be exercised." The monovalent
rubella vaccine was used exclusively in the past. Lately, the MMR vaccine, on
the recommendation of the CDC, has largely replaced it.The intent of this study
was to examine what effect the mothers' revaccination during the postpartum
period may have had on their children. Methods The questionnaire reproduced in Appendix A was distributed
by e-mail and newsletter to parent groups in the United Kingdom, Australia, and
the United States and posted on several web sites. The study was also mentioned
in a popular book on autism(1) and in publications by the Autism Research
Institute and the Autism Autoimmunity Project. A total of 440 questionnaires
had been received by the time of this analysis. Each entry was assigned a
number, and an immediate effort was made to contact the mother to notify her of
her study number and to complete any missing information. Questionnaires were
excluded if they were incomplete and contact information was not supplied:
about 70 questionnaires had to be discarded for this reason. Of the remaining
370 respondents, sixty had received MMR or rubella vaccine in the postpartum
period and were included in this study. All questionnaires are available for
review, and the data from the 60 subjects of this report are available in
digital format.
To See The Full Story: http://www.haciendapub.com/yazbak.html
******************************
Fellow Readers,
I am compelled to post on the recent dismissal/resignation of Dr.
Andrew Wakefield from his position with the Royal Hospital in the
United Kingdom. Dr. Wakefield has given us the greatest gift we
could ask for, "HOPE". Andrew's stalwart pursuit of the
"gut" issues
and their effect in the presentation of Autistic Syndrome Disorder in
the face of great pressure and adversity has given my son and many
other sons and daughters a greater oppotunity for a full and
productive life. I believe this gift should now be returned in
kind. We, most especially the fathers of ASD children have been
forced to deal with change. We have been forced to let go of our
rigidities and the preconceived notions of our daily lives in order
to face the realities of ASD. There is a great resevoir of hope and
flexibility that now might act as a wellspring for the Doctor's sore
spirit. We, as the group who have most benefited from his life's
work, should reach out to assure him that he is in our thoughts and
that we have every confidence in him.
I have no doubt that Dr. Wakefield will land on his feet and most
likely in an even better position to persue his research but I
believe that we have a singular opportunity to honor this man who's
dedication to research and the medical needs of Autistic people
throughtout the world has meant so much.
I hope this message and many others reach Andy and help him know
we're living his work. thx, rob
rsidell@tuckeranthony.com
******************************
David and Lesa Walsh
374
County Route 1
Warwick, New York 10990-2216
December 6th, 2001
E-mail: lesaland@warwick.net
Professor Humphrey Hodgson [Dean]
Royal Free and University College Medical School
(Royal Free Campus)
Pond Street
Hampstead, London NW3 2QG
Dear Professor Hodgson,
We were saddened, dismayed and angered, quite frankly, when
we received news of Dr. Andrew Wakefield's resignation from your institution.
As parents of a son with Autism, we believe his disability is directly linked
to his vaccinations. Subsequently, we have followed Dr. Wakefield's research
and findings with much interest. After reading about the circumstances under
which he tendered his resignation, we started to do a little research. Here are
some of our findings from the BBC web site:
http://www.bbc.co.uk/education/medicine/nonint/modern/dt/modtbi1.shtml
Joseph Lister: ... At first Lister was regarded as an
eccentric and nurses resented the extra work that his
obsession
with cleanliness caused. ...
Edward Jenner: ... In 1798 Jenner published his findings and
submitted them to the Royal Society who refused to
publish
them because of opposition to vaccination from doctors. Doctors opposed
vaccination
because
they were suspicious of new ideas and were accustomed to using inoculation. ...
Louis Pasteur: ... However, not all of Pasteur's ideas were
accepted. He recommended that surgical instruments be
boiled
before an operation to kill any germs on them, but most surgeons ignored this advice.
...
Marie Curie: ... Despite her success, Marie Curie faced great
opposition from male scientists in France and she
never
received the recognition she deserved. ...
As you can read, many of the doctors, scientists and
researchers that are regarded as "icons" today were often considered
pariahs in their day. They were frequently treated with derision and/or
ridicule. The irony of including Edward Jenner in our sampling is not lost on
us!
We have met Andy on several ocassions since 1998. We have
heard him present his findings and research plans at conferences, workshops and
rallies. Lesa was fortunate to present at a conference [March, 2001] in
Brooklyn with Andy. His science is solid and, one day, he will be validated. We
have to surmise that someday, you may seriously regret the political avenue you
have chosen to pursue.
We are writing, however, to strongly urge your institution to
continue to care for the children currently being seen by staff at the
hospital's department of paediatric gastroenterology. After all, it is the care
of these patients that is paramount, no matter the political agenda. We thank
you for your time and your attention to this matter.
Sincerely,
David and Lesa
Walsh
A copy of this letter was also sent to Professor Carol Black, Professor Brent
Taylor and Professor Mike Spryer
******************************
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INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR
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