The story of Ignaz Semmelweiss sheds light upon why the NIH and NIMH are impeding
progress in research about causes, diagnostics, and treatment in autism and
similar syndromes.
      By clinging to an oversimplified and outmoded model of autism (ie, it's gotta
be genetic), the stubborn persistence of several research administrators in the NIH
and NIMH means that funding for autism and autism-spectrum syndromes remains
funneled into the hands of a small group of researchers who pledge (via NIH-grant
contracts) to conduct their research in accord with the model wherein "it's gotta
be genetic" (1). This funding pattern imposes a serious limitation on research that
ought be occurring, given the growing amount of new data which indicate that *more
than* genetic-aspects need be considered.
      The relationship between (a) the offically approved though outmoded paradigm
and (b) subsequent funding patterns is worth re-stating: The persistence of the NIH
and the NIMH in focusing almost entirely upon a genetic-theory of autism
means that a goodly amount of data continues to be ignored, shunted from view, and
unfunded -- even as the primary genetics-model researchers are blessed with abundant
funding despite decades of non-success (1). For instance, the data from Wakefield,
Warren, Singh, Shattock, Oleske et cetera are important, as are patterns amidst
parental anecdotes -- eg, gastrointestinal atypicalities, vaccination effects,
extraodrinarily recurrent otitis et cetera.
      However, as recent years have shown, despite the many new data and anecotes,
the NIH and NIMH are resistant to change. The new data remain virtually ignored, the
parents' anecdotes treated as if mere hearsay. Not surprisingly, in the face of this bureaucratic
intransigence, the goal of changing and improving the NIH and NIMH in regard to
autism funding will require increased effort.
      Toward that goal, the data and fate of Ignaz Semmelweiss reveal much about
challenges to well-entrenched medical paradigms, about how new data are ignored, and
proponents of new data and alternative paradigms are treated. 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, 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 pueperal 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
med 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 study, 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's work should have proven to be 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's academic rank was
lowered, his hospital priveleges 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 relationship between (a) Semmelweiss's data and recommendations and (b) his
medical school's professors, bureaucrats, and their colleagues has parallels in the
modern-days relationship between (i) new data from parental anecdotes and from a
few, daring autism researchers, and (ii) the espoused beliefs of and funding
patterns enforced by key personnel within the NIH, the NIMH, and their affiliated
subsidiaries we think of as "medical school research facilities". Let us consider
two parallels between how Semmelweiss was treated and how the NIH and NIMH react to
new data in autism-spectrum syndromes:
      1: Initially and for many years, new data are strongly ignored; then, they are
resisted; and finally, if a person espouses those data and is persistent in seeking
to explore their ramifications, then he or she becomes shunned and excluded. That
these reactions occur leads to a second ramification significant to autism research
in the 1990s and beyond.
      2: Despite the new data and its acceptance by many individuals, the data and
*ramifications* of that data tend to remain ignored by highly placed medical
bureaucrats. As a result, medical practices that ought change because of the new
data's signficance do not change; and people entrenched within the old paradigm (now
made outmoded by the new data) do their best to enforce the old paradigm -- and do
so despite the fact that the new data suggest better methods of treatment,
diagnostics, or research.

During Semmelweiss's era, advances in agriculture and in sanitary practices (ie,
events progressing *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 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.
      Similarly, keeping Dr. Semmelweiss's fate in mind, we wonder in regard to
autism, how many years will 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 cause the NIH and NIMH to quit acting like the
officials who suppressed Semmelweiss and instead to begin acting like sincere
scientists who appreciate new data, even as paradigms must adapt or be replaced.

My own hunch is that the NIH and NIMH will not change from within; the senior
practitioners of the "it's gotta be genetic" model have too much influence. Just as
Semmelweiss and his data were suppressed, so too will the NIH/NIMH autism-research
insiders continue to act against the the growing body of new data in autism; the
NIH's pro-genetic old-timers will cling to their paradigm and its funding. As a
result, change within the NIH and NIMH will have to be initiated from outside those
tax-supported corporations.

 As a goal for 1999 and beyond, I offer that parents and their organizations and
foundations increase the pressure brought to bear upon the NIH and the NIMH in
regard to how autism-research funds are allocated. The "it's gotta be genetic" model
is no longer the only paradigm worthy of funding; and not to fund other models and
other data in autism is no longer scientifically valid. The NIH and the NIHM are re-
enacting the Ignaz Semmelweiss scenario wherein new data are ignored on behalf of
an old-guard and its outmoded paradigm; autism children and their parents deserve
far more. The paradigm-shift in autism must occur more rapidly, even within the NIH.


Teresa Binstock

Researcher in Developmental and Behavioral Neuroanatomy


(1) See autism-list posts by Ray Gallup or Bob Jensen for further discussion and
important points.
(2) Jeanne Achterberg; p110-111; Woman As Healer. Shambhala Publications, Inc.;
Boston, 1990.

      Teresa comments: this is an excellent, readable book offering many insights
about the history of healing, herbs, and midwifery, focusing upon the role of women,
including during the Inquisition, when women with knowledge of healing and herbs
ofter were killed as "witches".