THE INTELLECTUAL AND MORAL

FAILURES OF AUTISM SCIENCE

Autism One Environmental Symposium

May 22, 2009

KEY THEMES

Autism as an ongoing intellectual battleground

between so-called experts and parents

Moral action and moral cognition

Invisible and visible violence

The moral responsibility of intellectuals as witnesses

Autism as an ongoing intellectual
battleground between so-called
experts and parents
LEO KANNER ON REFRIGERATOR PARENTS

1943: “In the whole group, there are very few really
warmhearted fathers and mothers. For the most part, the
parents, grandparents and collaterals are persons strongly
pre-occupied with abstractions of a scientific, literary or
artistic nature and limited in genuine interest in people. Even
some of the happiest marriages are rather cold and formal
affairs.”

1949: “Most of the patients were exposed from the beginning

to parental coldness, obsessiveness and a mechanical type of
attention to material needs only.”
LEO KANNER ON REFRIGERATOR PARENTS (2)

1952: “As a matter of fact, this is unfortunately what happens

to the majority of autistic children either because they have
been abandoned…or because..their imperviousness has become
too entrenched, or because therapy has been sabotaged by
emotionally refrigerated parents incapable of defrosting.”

1954: “Yet the parents did not seem to know what to do with the
children when they had them. They lacked the warmth which the
babies needed. ”

1960:“Kanner has sometimes written of the “refrigerator” type

of parent...highly intelligent, organized, professional parents,
cold and rational...who just happened to defrost long enough to
produce a child.”
LEO KANNER ON REFRIGERATOR PARENTS (3)

1968: “At no time have I pointed to the

parents as the primary , postnatal sources of
pathogenicity.”
BETTELHEIM IN VIENNA

Ran family lumber business

Frustrated intellectual

Imprisoned by Nazis

Freed in 1939

Moved to U.S.
THE ROOTS OF BETTELHEIM’S VIEW OF AUTISM
INDIVIDUAL AND MASS BEHAVIOR IN EXTREME SITUATIONS

“Thus what was startling about the experience in the camps

was that though the overpowering conditions were the same
for many prisoners, not all succumbed. Only those showed
schizophrenic-like reactions who felt they were not only
helpless to deal with the new situation, but that this was
their inescapable fate. These deteriorated to near autistic
behavior when the feeling of doom penetrated so deep that
it brought the added conviction of imminent death. Such
men were called “moslems” in the camps and other prisoners
avoided them as if in fear of contagion”

-Bruno Bettelheim, The Empty Fortress,

1967
(citing his 1943 article, “Individual and
Mass Behavior in Extreme Situations”)
BETTELHEIM’S VIEW OF THE ETIOLOGY OF
AUTISM

Germany Infantile Autism

Extreme situation Nazi concentration The family home

camps

The oppressor The mother

The SS guards

The victim The autistic child

Moslems

Overwhelming Fear for their lives

emotion Fear for their lives
BETTELHEIM ON HOMICIDAL MOTHERS

“Despite the incredible variety of symptoms among the several

hundred schizophrenic children we have worked with over the
years, they all shared one thing in common: an unremitting fear for
their lives...the more autistic the schizophrenic child, the more
debilitating his symptoms, the greater is his mortal anxiety. Autistic
children in particular not only fear constantly for their lives, they
seem convinced death is imminent; that possibly it can be
postponed just for moments through their not taking cognizance of
life...

“I believe the initial cause of withdrawal is rather the child’s correct

interpretation of the negative emotions with which the most
significant figures in his environment approach him. This is in turn
evokes rage in the child until he begins—even as mature persons do
—to interpret the world in the image of his anger. All of us do that
occasionally, and all children do it more than occasionally. The
tragedy of children fated to become autistic is that such a view of
the world happens to be correct for their world.”
“Foremost among the handful of
psychiatrists and psychologists
who have dedicated themselves
to unraveling the puzzle of
autistic behavior is Bruno
Bettelheim. No brief review can
do justice to his wisdom or his
compassion.”
- New York Times:
February 12, 1967
BERNIE RIMLAND ON THE THE REFRIGERATOR
PARENT THEORY: “GUILTY UNTIL PROVEN
INNOCENT”

“ Simple…justice has been neglected,

consistently, by those [experts] who deal
with families having children afflicted with
autism, and the damage and torment this
practice has wrought upon parents whose
lives have already been shattered by their
children’s illness is not easy to contemplate.
To add a heavy burden of shame and guilt to
the distress of people whose hopes, social
life, finances, well-being and feelings of
worth have been all but destroyed seems
heartless and inconsiderate in the extreme.
Yet it is done.”

-Infantile Autism, 1964

“All my life, I have been
working with children whose
lives were destroyed because
their mothers hated them.”
Bruno Bettelheim,
1981
Moral action and moral cognition
TODAY’S MORAL ISSUE
The autism epidemic demands moral action

Autism rates have exploded in the US in a short period of time

The increased rates vary by geography (implicating local

exposures) but the increases are pervasive (implicating
non-local factors)

The increases must result from environmental injury. Still,

even though clear candidates have emerged, causation is
complex

The kind of environmental factors that can explain these

injuries is short and requires the participation of skilled
scientists to witness

Society must take urgent action to reduce injuries, eliminate

TODAY’S INTELLECTUAL FAILURES
Moral action face obstacles of moral cognition

Specific to autism
 We can’t know if there’s a crisis

 We shouldn’t seek to know if vaccines increase risk

Bigger than autism

 We need proof: complexity of necessary and sufficient
causes
 from Koch’s Postulates to Bradford Hill Criteria
 We need to trust Science: failures in governing progress

 The fight for the soul of the medical enterprise

“WE CAN’T KNOW”
Epidemiological nihilism

“I also believe that the time has come to accept that, given the
behavioral basis of the autism diagnosis, the lack of knowledge
about autism’s underlying etiology, and the limitations of
retrospective analyses, we are not likely to develop a
conclusive body of evidence to either fully support or fully
refute the notion that there has been some real increase in
autism risk over the past 2 decades.”

- Craig Newschaffer
Department of Epidemiology, Center for Autism and
Developmental Disabilities Epidemiology, Johns Hopkins
Bloomberg School of Public Health,
“Investigating Diagnostic Substitution and Autism
Prevalence Trends”, Pediatrics. 2006
17
“WE CAN’T KNOW”
No prospective studies?

Results of Prospective NIH Collaborative Perinatal Study

55,908 pregnancies with births from 1959-66 followed up in formal
examinations at several points (Niswander & Gordon, 1972),
including
 Psychological exams at 8 months, 4 years and 7 years
 Neurological exams at 1 year and 7 years
 Speech and hearing tests at 3 years and 8 years

Prospective birth sample used to study perinatal events in autism

 30,000 computerized case records (Torrey et al, 1975)
 200 cases of abnormal development reviewed closely
 14 cases of infantile autism, 6 additional cases close in
symptoms
 rate of 4.7 per 10,000 for infantile autism, 6.7 per 10K ASD

“Although the authors make no claim to having identified every

autistic child among the 30,000 children, the prevalence rate of 4.7
per 10K live births is almost identical to that reported by Wing et al
(1967), thus leading us to believe that most such children were 18
included.”
“WE SHOULDN’T SEEK TO KNOW”
Prospectively unethical, retrospectively
impossible

Dr. Offit noted …[that] education of the lay public, as well as the
healthcare community, is needed if unfounded fears of
vaccination are to be dispelled.

"Public health officials and the academic community are really

trying to communicate this science to the public, but it's a real
challenge," Dr. Offit said. "Is it your right to catch and transmit
a potentially fatal infection? Right now, the answer to that
question is yes, but we'll see how long it takes before the
answer to that question is no."

He added that it would be unethical to do a prospective study in

which some children were not vaccinated, given the known
harms of failure to vaccinate, and that retrospective studies
would have methodological issues because the groups would
differ in characteristics other than their vaccination status.
- Laurie Barclay MD
Medscape Medical News, February 9,
2009
“WE SHOULDN’T SEEK TO KNOW”
Human experiments are an unethical policy

The heart of an effective safety system is sound science. 

The vaccine schedule has never been proven safe in
animal or human trials that compare both the acute and
chronic health status of vaccinated versus unvaccinated
individuals.  The schedule must therefore be regarded as
an unethical experiment.  Ethical codes from Hypocrites to
Nuremberg and their modern embodiments in law
emphasize the physician’s duty to the individual patient,
especially the mandate to avoid harm.
-SafeMinds public comment letter to
National Vaccine Program Office,
March
31, 2009
“WE NEED PROOF”
The classic standard in germ theory

Koch’s Postulates
1. The microorganism must be found in abundance in all
organisms suffering from the disease, but should not
be found in healthy animals.
2. The microorganism must be isolated from a diseased
organism and grown in pure culture.
3. The cultured microorganism should cause disease
when introduced into a healthy organism.
4. The microorganism must be reisolated from the
inoculated, diseased experimental host and identified
as being identical to the original specific causative
agent

What happens when the microbe is necessary but not

sufficient?
“WE NEED PROOF”
The rising standard for environmental
causation

Criteria for causal relationships according to Austin

Bradford Hill
1. Strength of the association
2. Consistency of the observed association
3. Specificity of the association
4. Temporality of the association
5. Biological gradient or dose response curve
6. Biological plausibility
7. Coherence of the association
8. Experimental data
9. Analogy to other diseases

What happens when the exposures are sufficient but not

necessary?
THE FIGHT FOR THE SOUL OF THE MEDICAL
ENTERPRISE
“We need to trust Science”

Medical Health
industry consumers

Scientists
THE FIGHT FOR THE SOUL OF THE MEDICAL
ENTERPRISE
“We need to trust Science”

Medical Industry Lens Outside The Matrix

Role of evidence Evidence-based medicine Weaponized knowledge

Sociology of science Consensus science = Chains of collective

truth reasoning
(trust the scientific (sustained consensus
process) errors)
Governance model

Public/private Commercialized medicine

partnerships
Trust in…

Freedom
Authority
Invisible and visible violence
VISIBLE VS. INVISIBLE VIOLENCE
A risky analogy

Visible violence Invisible violence

Priority of the National socialism Public health
state
Call to action Fight (eradicate) the Control (eradicate) the
infection disease
Career ambition Adolf Eichmann Intellectual politicians

Fear of protest Good Germans Just scientists

Scale of the The Holocaust The autism epidemic

problem (6 million) (<1 million but rising)

Parallelism is not the same as proportionality

 THE SCALE OF THE PROBLEM

US autism
population
2,500,000

2,000,000

Constant
1,500,000 prevalence

1,000,000
Epidemic
increase

500,000

0
1930 1940 1950 1960 1970 1980 1990 2000 2010 2020 2030
The moral responsibility of
intellectuals as witnesses
THE GUT CHECK FOR SCIENTIFIC
INTELLECTUALS
What he did
Responded to parent
requests for care
Published a case series
and followed up on new
theory
Expressed concern over
the safety of a
commercial product
Supported monovalent
vaccines
Continued his research,
which is widely
replicated
What they did
Lancet published the
paper
Lancet editor Horton,
showing cowardice but
claiming high principle,
turns on study
Some co-authors “retract
the interpretation”
Brian Deer, in Murdoch
paper, begins character
assassination
Deer and Horton coach
GMC on charges
WHAT IS TO BE DONE?

Intellectuals witness and report invisible violence

Intellectuals enable invisible violence by disabling moral cognition

The human toll of invisible violence is rising and needs witnesses

Invisible violence is not a puzzle or a mystery, it demands moral

cognition

Autism awareness is not enough, it’s time for moral choice and
action

All of us, especially intellectuals, must speak up to end the

invisible violence