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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Thursday December 6, 2001
INDEX:
* Andrew Wakefield, MD
* Ignaz Semmelweiss,
Autism and NIH/NIMH Paradigms by Teresa Binstock
* Bill to Fund NJ's Autism Research Efforts
* Honors Thesis
* Doug Flutie has set a new totally independent foundation
**********************
Andrew Wakefield, MD
Dear
Professor Hodgson and Professor Spyer:
I have heard the news that Andrew Wakefield, MD is no longer working at
the Royal Free Hospital. As a parent of an autistic child that was
normal until he got the MMR vaccine, I know that Andrew Wakefield was
onto the truth but his critics and detractors don't want the truth. Over
400 families have contacted me in the US linking the MMR vaccine to
their children's autism. Besides having bowel problems our son has
"elevated measles titers equal to such neurological disorders as
subacute sclerosing panencephalitis", said James Oleske, MD (pediatric
immunologist at UMDNJ, Newark, NJ in November 1995 and got 19 IVIG
infusions from February 1996 to May 1997). Dr. James Oleske proved in
the 1980s that children were coming down with AIDS even after the
National Institutes of Health (NIH) and the Center for Disease Control
(CDC) denied it.
So too, Dr. Wakefield has shown that children with autism have measles
in the gut. As far as the parents in the US and the UK are concerned the
MMR vaccine is causing this epidemic of autism. There is no doubt of it.
Dr. Wakefield will continue to pursue the truth with the support of
parents worldwide. Those vaccine proponents of the MMR vaccine may have
won this phyric victory but they will lost the war. The truth always
wins out and those who try to hide the truth, eventually get their
caught in their lies.
Our organization, The Autism Autoimmunity Project has and is supporting
the research of Dr. Wakefield and will continue to do so. In the
beginning of the Charles Dickens' novel Ebenezer Scrooge sees the ghost
of Jacob Marley in chains and doesn't want to face up to the truth. Well
this is the first chapter and the story is not over. Dr. Wakefield will
win because, most important, he has the science, the parents and the
truth on his side.
Ray Gallup, President
Autism Autoimmunity Project
45 Iroquois Avenue
Lake Hiawatha, NJ 07034
Tel (973) 299-9162
truegrit@gti.net
**********************
Ignaz Semmelweiss, Autism and NIH/NIMH Paradigms
by Teresa Binstock
The story of Ignaz Semmelweiss may help to explain why the National
Institutes for Health and National Institutes for Mental Health are impeding
progress in research regarding the causes, diagnostics, and treatments of
autism and related syndromes.
Clinging to an oversimplified and outmoded genetic model of autism, several
research administrators in the NIH and NIMH continue to channel funding for
autism and autism spectrum syndromes into the hands of a small group of
researchers who pledge (via NIH grant contracts) to conduct their research
in accordance with the assumption "it's gotta be genetic."1
This funding
pattern imposes serious limitations on research that ought to be occurring,
given the growing amount of new data which indicate that aspects other than
the genetic need to be considered.
The relationship between (a) the officially approved, though outmoded,
genetic paradigm and (b) subsequent funding patterns is worth restating. The
persistence of the NIH and the NIMH in focusing almost entirely upon a
decades-old genetic-based theory of autism means that a goodly amount of
data continues to be ignored, shunted from view, and denied funding--while
the primary genetics-model researchers are repeatedly blessed with abundant
funding despite decades of non-success.1 Findings presented by Wakefield,
Warren, Singh, Shattock, Oleske and other key scientists are neglected, as
are the implications of parental anecdotes--e.g., gastrointestinal
atypicalities, vaccination effects, extraordinarily recurrent otitis, etc.
As recent years have shown, despite important new information, the goal of
updating and improving the NIH and NIMH in regard to autism research funding
will require increased effort. Moving toward that goal, the findings and
fate of Ignaz Semmelweiss reveal much about the dynamics of challenging
well-entrenched medical paradigms: new data are often ignored by the
scientific community, and proponents of new data and alternative paradigms
are treated with contempt, or at the least, condescension. In short, when a
medical model becomes institutionalized and its primary spokespersons become
set in their well-funded ways, such institutions and individuals strongly
resist change. A fine rendition of the Semmelweiss story is presented in
Jeanne Achterberg's book Woman as Healer.
"On Controlling Germs"
By the end of the nineteenth century, the work of Lister, Pasteur, Koch, and
other 'microbe hunters' led to the germ theory of disease and to knowledge
of sepsis and antisepsis. Hospital procedures and sanitation dramatically
improved.
Even before the germ theory [evolved], another man--Ignaz Semmelweiss
(1818-1865)--was successful in learning to control the spread of pueperal
(childbed) fever, caused by Streptococcus pyogenes. His is a long, sad
story, representing the worst that can happen when one challenges the
prevailing mode of thought.
Semmelweiss reasoned that dirty hands were the cause of puerperal fever. He
noted that wards staffed by medical students had about a 10-percent
mortality rate due to fever, while those staffed by midwives had 3 percent.
He also knew that medical students went straight from autopsy chambers to
laboring mothers. They (the medical students) never washed their hands, but
wiped them, instead, on aprons already coated with body fluids.
Semmelweiss ran several experiments requiring students to wash their hands
with soap and water and rinse them in chlorinated lime solution before
entering the wards. With each student, the death rate dropped to less than
1.5 percent, only to return to the previous high levels when the
[hand-washing] procedures were curtailed.
Semmelweiss' work should have proved a boon to motherhood and life. Not so:
his colleagues greeted his paper with jeers and scathing attacks on his
character. They simply refused to believe that their own hands were the
vehicle for disease. Instead, they attributed it to a spontaneous phenomenon
arising from the 'combustible' nature of the parturient woman. Semmelweiss'
academic rank was lowered, his hospital privileges restricted. Despondent,
he was committed to an insane asylum, where he died of blood poisoning, a
disease not unlike the puerperal fever he had almost conquered.2
The dichotomy between Semmelweiss' knowledge and recommendations, on the
one hand, and on the other, those of the medical establishment's professors,
bureaucrats, and physician-colleagues, parallels the dilemma faced by
modern-day autism researchers/practitioners who seek a more accurate
mapping of autistic etiologies, and more appropriate and timely treatments for
autistic persons. New data compiled from parental observations and from a
few, daring autism researchers clashes sharply with the espoused beliefs of,
and funding patterns perpetuated by, key personnel within the NIH, the NIMH,
and their affiliated subsidiaries we think of as medical schools and
research facilities. Let us consider the patterns that characterized both
Semmelweiss' era and present-day NIH/NIMH reactions to new data affecting
the autism-spectrum syndromes:
1: Initially and for many years, new data are broadly ignored; then, they
are acknowledged but resisted; finally, if a person embraces the new
knowledge and is persistent in seeking to explore its ramifications, then he
or she becomes shunned and excluded from the scientific/medical community.
That these reactions occur leads to a second ramification significant to
autism research in the 1990s and beyond.
2: Despite new findings and their acceptance by many individuals, the data
and ramifications of that data tend to remain ignored by highly placed
medical bureaucrats. Medical practices highlighted for change by significant
new findings fail to change as practitioners entrenched within old, outmoded
thought-systems do their best to avoid adopting new and better methods of
treatment, diagnosis, or research suggested by new information.
During Semmelweiss's era, advances in agriculture and in sanitary practices
(i.e., conditions undergoing improvement outside of medical schools and
teaching hospitals) were alleviating much human suffering, but women amidst
childbearing were not so fortunate; they continued to die at needlessly high
rates. After summarizing health-related progress in the 19th century,
Achterberg writes:
None of the advances in health affected the abominably high infant and
maternal mortality rates, however. The risks to life in giving birth and
being born were exacerbated to epidemic proportions as increasing numbers of
women gave birth in [unsanitary] hospitals.2
In other words, there was a very real cost-prolonged human suffering, even
numerous deaths--because despite the data collected and shared by Dr.
Semmelweiss, medical-research officials of his day were defiantly resistant
to change.
Keeping Dr. Semmelweiss's fate in mind, we may wonder in regard to autism,
"for how many years will the new data be ignored? In how many U.S. medical
school research facilities will promising research be steered away from or
squelched?"
What will be required to bring the NIH and NIMH out of the time of
Semmelweiss, and into a new age of sincere scientists who appreciate new
data, and recognize that even the most trusted, familiar paradigms must be
adapted or replaced.
My own hunch is that the NIH and NIMH will not change from within in regard
to autism research; the senior practitioners of the genetic model have too
much influence. Just as Semmelweiss' philosophy and data were suppressed, so
too will NIH/NIMH autism-research insiders continue to act against the
growing body of new findings concerning autism; particularly the NIH's
pro-genetic old-timers will cling to their familiar paradigm and fund
accordingly. If this continues to occur, change within the NIH and NIMH will
have to be initiated from outside those tax-supported entities.
As a goal for 1999 and beyond, I offer the suggestion that parents and
parent-based organizations increase the pressure being brought to bear upon
the NIH and NIMH in regard to how autism-research funds are allocated. The
genetic model is no longer worthy of exclusive funding; the failure to fund
other research proposals concerning autism is no longer scientifically
valid. The NIH and NIMH are re-enacting the Ignaz Semmelweiss scenario when
new data are ignored on behalf of an 'old guard' and its outmoded paradigm;
autistic children and their parents--and indeed science itself--deserve far
more. A paradigm-shift in the study of autism must be brought to occur,
even within the National Institutes of Health.
Teresa C. Binstock (aspergerian@yahoo.com) conducts independent research in
Developmental and Behavioral Neuroanatomy. For the last several years she
has focused upon immunological and infectious aspects of autism-spectrum
disorders, and currently maintains a website at
http://www.jorsm.com/~binstock/index.htm featuring such topics as
"Infection-Impaired Immunity: a New Direction in Autism Research"
and
"Vaccination Induced Neuropathies." Teresa co-authored articles
entitled
"Fragile X and the Amygdala: Cognitive, Interpersonal, Emotional,
and
Neuroendocrine Considerations" and "Association of Anti-MBP and
Anti-NAFP
Antibodies with HHV-6 Antibodies in a Child with Autism Regression" in
Developmental Brain Dysfunction, vol. 8, 1995, and the Journal of Allergy
and Clinical Immunology, vol. 101, number 1, part 2, January 1998. Teresa
is diagnosed with Asperger's Syndrome, an autistic spectrum condition.
1 See postings to Autism electronic mail discussion list by Ray Gallup and
Bob Jensen for further discussion and important points (St. Johns
University, New York;
autism@maelstrom.stjohns.edu).
2 Jeanne Achterberg, Woman as Healer (Boston: Shambhala Publications,
Inc.,
1990), pp. 110-111.
Editor's notes:
Philosopher Arthur Schopenhauer once said, "All truth goes through three
stages. First it is ridiculed. Then it is violently opposed.
Finally, it
is accepted as self-evident."
The genetic or pre-birth accident paradigms in autism are not the only
static theoretical/procedural models to fall under criticism in recent
years. The underlying premises supporting both vaccine formulation and
mass
vaccination programs are also increasingly subject to criticism; in this
regard, readers might turn to The Leading Edge Research Group "Master
Analysis of the Vaccination Paradigm," available at
http://www.trufax.org/vaccine/vacmaste.html.
**********************
Bill to Fund NJ's Autism Research Efforts
New
Jersey Action Alert
Bill to Fund NJ Autism Research Efforts
Needs Immediate Action!
The passage of the New Jersey Infantile Autism
Biomedical Research act
of 1999 created the NJ Governor Council on Autism. Since its inception,
the Council has awarded 23 research grants, assisted in the establishment of
an autism registry in the state, and helped develop the first statewide
campaign in the country designed to educate parents of young children and
physicians about the early warning signs of autism and other developmental
disorders. (For more information about the Council, visit their website
at
www2.umdnj.edu/chinjweb/govcofolder.htm)
After two years, funding for the Governor Council is in jeopardy. A
bill now before the Senate would appropriate FY 2002 funds and make the
Council a permanent fixture in the state budget. However, this
legislation
(S-1133) must be passed by the Senate by the end of 2001 to ensure the
future of the Council. If legislation is not passed this year, then the
bill will and will have to be reintroduced in the next session.
Accomplishments of the past session (passage by the Assembly and the two
Senate oversight committees) would have to be repeated. Plus funding for
2002 will be lost. There is only one more Senate session left on December
17th. The time to act is now!
What can you do? ...The Senate must now pass
S-1133 and forward it to
Acting Governor DiFrancesco for his signature. Governor DiFrancesco, who
also serves as the President of the Senate, decides what bills to post for a
vote in the Senate. Please write or call Governor DiFrancesco about the
importance of continuing our state autism research efforts and ask him to
post this bill for a vote immediately. Share with him how the research
and
projects funded by the Council have affected or could affect your family and
the entire autism community. Tell him that by passing this bill, the
Senate
will reassert its commitment to finding treatments and a cure for autism.
A
sample letter and a sample telephone script are given below. Feel free to
change them to fit your own views and situation. Please also send a copy of
your letter or make separate phone calls to Governor-Elect McGreevey and
Senate Majority Leader Bennett.
Write, fax, or call Acting Governor DiFrancesco
at:
The Honorable Donald DiFrancesco
Governor, State of New Jersey
State House, Office of the Governor
P.O. Box 001
Trenton NJ 08625
Tel: 609-292-6000
Fax: 609-292-3454
Send a copy of your letter or call Gov. McGreevey and Senate Majority Leader
Bennett:
The Honorable James McGreevey
Office of the Governor Elect
240 West State Street
PO Box 022
Trenton, NJ 08625-0022
Phone: 609-777-3501 Fax: 609-943-4825
The Honorable John O. Bennett
New Jersey State Senate
655 Shrewsbury Ave, Suite 307
Shrewsbury, NJ 07702
Tel: 732-842-4900 Fax: 732-842-5327
If you have time. . .It would be helpful to send
a copy of your letter
or make a phone call to your own state senator. As a constituent, you have
influence. If your local senator sees that there are many people in his
district concerned about autism, she/he will be that much more inclined to
express their support to Governor DiFrancesco for S1133. To find your
state
senator, go to http://www.njleg.state.nj.us/html/members.htm. Enter your zip
code and the name of the Senator for your District will appear.
Sincerely,
Supporting Autism Organizations: Cure Autism Now; COSAC; NAAR; Autism
Autoimmunity Project; Unlocking Autism; Safe Minds; IMPACT; POAC; MOSAIC;
Noah Ark; PACT
SAMPLE LETTER * SAMPLE LETTER * SAMPLE LETTER * SAMPLE LETTER
[your name & address]
[todays date]
The Honorable Donald DiFrancesco
Governor, State of New Jersey
State House, Office of the Governor
P.O. Box 001
Trenton NJ 08625
Dear Governor DiFrancesco:
I am writing to you today to ask you, as Senate
President, to post
Autism Legislation S1133 for a vote on December 17, 2001. This
legislation
is critical to the lives of the tens of thousands of children, adults and
families living with autism in New Jersey -- families like mine.
[provide personal information about your
child/family situation.
Example:]
I am a parent of a six year old boy with autism.
Autism has robbed us
of our beautiful, once normally developing son. He was just over a year
old
when we noticed disturbing changes. He stopped answering to his name and
stopped looking into our eyes. He lost what few words he had.
Within a
matter of months, he had disappeared into his own world. Now, he spins in
circles, shrieking. He is more interested in flicking his fingers in
front
of his eyes than he is in me. If he doesn't get better he will never be
independent, never have a job, never get married, never have children.
Autism currently affects 1 in every 150 children
born today, according
to the Centers for Disease Control. This number represents an increase of
over six times the rate of 1 in 1,000 which autism researchers cited just
ten years ago. We are in the midst of an autism epidemic! At this rate
autism will cost New Jersey over $1 billion annually in direct costs alone,
and our nation over $43 billion. We will go broke unless medical research is
conducted on treatment and prevention.
We need your help to change the course of this disease. The Senators,
Assemblymen, and Governors of New Jersey have always shown compassion for
autistic children, as they have for its other vulnerable citizens. S1133 has
been passed by the Assembly and it has been approved by the Senate Health
and Budget Committees. Please dont let us down today by not posting this
bill.
The New Jersey Infantile Autism Biomedical
Research Act, passed in
1999 and re-authorized in 2000, created the NJ Governor's Council on Autism.
Since its inception, the Council has awarded 23 research grants, assisted in
the establishment of a state autism registry, helped develop the first
campaign among parents and physicians for early diagnosis, and has allowed
UMDNJ to obtain over $6 million in Federal research funds. A new innovative
treatment center in Newark is also being formed. New Jersey can now claim to
be at the forefront of autism research worldwide.
S1133 would appropriate $1.5 million annually for
each of five years
for autism biomedical research at UMDNJ. This bill is a re-authorization of
the money for the Governor Council that has been appropriated for the past
two years and hence does not represent an increase in spending for the
State.
I urge you to post S1133, the NJ Infantile Autism
Biomedical Research
Act. Autism is a daily struggle for our family. We need the hope that
this
legislation will bring for our childs future.
Sincerely,
[your name]
cc James McGreevey, Governor-Elect John Bennett, Majority Leader, NJ State
Senate
SAMPLE TELEPHONE SCRIPT * SAMPLE TELEPHONE SCRIPT * SAMPLE TELEPHONE
TELL RECEPTIONIST: My name is [your name]. I am a
parent with an
autistic child living in [town you live in], and I'd like to speak with the
Governor's staff member who helps determine what bills will be posted for a
vote in the Senate. I am calling to ask Governor DiFrancesco to post
S-1133 - The New Jersey Infantile Biomedical Research Act - for a vote in
the Senate on December 17th.
IF SPEAK WITH STAFFER OR IF LEAVING MESSAGE ON ANSWERING MACHINE, SAY:
My name is [your name]. I am a parent with an
autistic child living in
[town you live in], and I'd like to speak with the Governor's staff member
who helps determine what bills will be posted for a vote in the Senate. I
am calling to ask Governor DiFrancesco to post S-1133 - The New Jersey
Infantile Biomedical Research Act - for a vote in the Senate on December
17th.
IF SPEAK WITH STAFFER OR IF LEAVING MESSAGE ON ANSWERING MACHINE, SAY:
My name is ___________ from ___[town]___ .
I am the father/mother of
a [14 year old] autistic boy/girl who as a result of autism [cannot speak
/lives in his own world/doesn't even know that I'm his mother/father, etc.]
. The future of my son/daughter would be greatly improved if Governor
DiFrancesco will support Senate Bill S-1133, The New Jersey Infantile
Biomedical Research Act. This bill will continue annual funding of $1.5
million for autism research at UMDNJ. The State has funded this amount for
the last 2 years, so appropriating it this year will not increase State
spending.
The Assembly has already passed it, and it has
passed the Health and
Budget Committees in the Senate. Senate Majority Leader John Bennett has
said he has tried to post this bill for a vote several times, but Governor
DiFrancesco has so far refused to allow it to be posted for voting. Will
Governor DiFrancesco allow S-1133 to be posted for the next session, on
December 17th?
[IF STAFFER SAYS DIFRANCESCO WILL POST IT FOR A VOTE PLEASE CONTACT GEOFF
DUBROWSKY OF CAN - NJ 877 879-CURE OR BRENNA FACH OF COSAC AT 609 883-8100
RIGHT AWAY.]
[IF STAFFER SAYS "NO" OR "DON'T KNOW" ASK]
Can you please tell me why the Governor won't
support this bill which
means so much to so many families in New Jersey? I'd like to share some key
benefits of the bill for you, please.
1. Autism is not rare and it is now affecting one
in 150 children.
It's prevalence is increasing to epidemic proportions. We have to invest in
research now to find the cause, so we can prevent future cases.
2. It costs from $25,000 to $50,000 to educate an
autistic child for
just one year. Medical and therapy costs are also high. The condition is
lifelong and these children will require supports into adulthood, at huge
costs. If we don't invest in research today on treatments and prevention,
then the government will go broke supporting this population.
3. The track record of the Governor's Council on
how the money has
been spent so far shows that the dollars were invested wisely and benefit
the autism community. The funds from S-1133 will not be wasted.
4. Individuals with autism have a host of medical
issues which require
specialists for treatment. S-1133 will facilitate the improvement of needed
treatment centers for autism around the state.
5. This bill has and will continue to allow UMDNJ
to bring in Federal
dollars from the NIH and CDC, thus benefiting the state economy.
Again, I am asking Governor DiFrancesco to post S-1133. I hope I can
count on his support.
Thank you.
**********************
Honors Thesis
My name is Kimberly Walter and I am a senior at Connecticut College. I
am doing an Honors thesis in psychology on parent's views and feelings
about ABA therapy. I am focusing specifically on parent's of autistic
children currently using ABA therapy. My study has been approved by
the Connecticut College Institutional Review Board and is being
supervised by Professor Stuart Vyse.
I have put together a question which contains various surveys on ABA
therapy and Autism. The survey should take about 30 minutes to
complete and I gurantee complete confidentiality. Once I receive the
questionnaire in the mail, I will immediatley remove your consent form
from the rest of the packet. If anyone is interested in participating
in my study, write me at knwal@yahoo.com
Sincerely,
Kimberly Walter
**********************
Doug Flutie has set a new totally independent
foundation
Doug Flutie, Jr.
Foundation For
Autism, Inc.
Mission: The Foundation’s
mission is to aid financially disadvantaged families who need assistance in
caring for their children with autism; to fund education and research into the
causes and consequences of childhood autism; and to serve as a clearinghouse
and communications center for new programs and services developed for
individuals with autism.
History: The Doug Flutie, Jr.
Foundation for Autism was established by NFL quarterback Doug Flutie and his
wife, Laurie, in honor of their nine-year-old son, Doug, Jr. who was diagnosed
with autism at age three. Doug and Laurie are fortunate to have the resources
to provide their son with the educational opportunities, special equipment and
tools necessary for Doug Jr. to live a happy and rewarding life. They realize,
however, that there are thousands of families with autistic children who
struggle every day to pay for similar services. Their primary objective is to provide
families with a place to turn when they are in need of financial
assistance.Since 1998, the Fluties have helped raise over 3 million dollars for
autism through fundraisers, individual and corporate donations, sales of Flutie Flakes and MCI's
10-10-220 commercial featuring Doug Flutie and his son. The
Foundation awards grants on an annual basis to nonprofit organizations that
provide services for children with autism and to organizations that conduct
research on the causes and effects of autism. To date, the Fluties have granted
over $850,000 in Massachusetts, New York and at the national level.
http://www.dougflutiejrfoundation.org/
******************************
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