Autism One Environmental SymposiumAutism One Environmental Symposium

May 22, 2009May 22, 2009

THE INTELLECTUAL AND MORALFAILURES OF AUTISM SCIENCE

KEY THEMESKEY THEMES

Autism as an ongoing intellectual battleground Autism as an ongoing intellectual battleground between so-called experts and parentsbetween so-called experts and parents

Moral action and moral cognitionMoral action and moral cognition

Invisible and visible violenceInvisible and visible violence

The moral responsibility of intellectuals as witnessesThe moral responsibility of intellectuals as witnesses

Autism as an ongoing intellectual Autism as an ongoing intellectual battleground between so-called battleground between so-called

experts and parentsexperts and parents

LEO KANNER ON REFRIGERATOR PARENTSLEO KANNER ON REFRIGERATOR PARENTS

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

1949: 1949: ““Most of the patients were exposed from the beginning Most of the patients were exposed from the beginning to parental coldness, obsessiveness and a mechanical type of to parental coldness, obsessiveness and a mechanical type of attention to material needs only.attention to material needs only.””

LEO KANNER ON REFRIGERATOR PARENTS (2)LEO KANNER ON REFRIGERATOR PARENTS (2)

1952: “As a matter of fact, this is unfortunately what happens 1952: “As a matter of fact, this is unfortunately what happens to the majority of autistic children either because they have to the majority of autistic children either because they have been abandoned…or because..their imperviousness has become been abandoned…or because..their imperviousness has become too entrenched, or because therapy has been sabotaged by too entrenched, or because therapy has been sabotaged by emotionally refrigerated parents incapable of defrosting.”emotionally refrigerated parents incapable of defrosting.”

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

1960:“Kanner has sometimes written of the “refrigerator” type 1960:“Kanner has sometimes written of the “refrigerator” type of parent...highly intelligent, organized, professional parents, of parent...highly intelligent, organized, professional parents, cold and rational...who just happened to defrost long enough to cold and rational...who just happened to defrost long enough to produce a child.”produce a child.”

LEO KANNER ON REFRIGERATOR PARENTS (3)LEO KANNER ON REFRIGERATOR PARENTS (3)

1968: “At no time have I pointed to the 1968: “At no time have I pointed to the parents as the primary , postnatal sources of parents as the primary , postnatal sources of

pathogenicity.”pathogenicity.”

BETTELHEIM IN VIENNABETTELHEIM IN VIENNA

Ran family lumber businessRan family lumber business

Frustrated intellectualFrustrated intellectual

Imprisoned by NazisImprisoned by Nazis

Freed in 1939Freed in 1939

Moved to U.S.Moved to U.S.

THE ROOTS OF BETTELHEIMTHE ROOTS OF BETTELHEIM’’S VIEW OF AUTISMS VIEW OF AUTISMINDIVIDUAL AND MASS BEHAVIOR IN EXTREME SITUATIONSINDIVIDUAL AND MASS BEHAVIOR IN EXTREME SITUATIONS

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

-Bruno Bettelheim, -Bruno Bettelheim, The Empty FortressThe Empty Fortress, , 19671967

(citing his 1943 article, (citing his 1943 article, ““Individual and Individual and Mass Mass Behavior in Extreme Situations Behavior in Extreme Situations””))

BETTELHEIMBETTELHEIM’’S VIEW OF THE ETIOLOGY OF S VIEW OF THE ETIOLOGY OF AUTISMAUTISM

Extreme situationExtreme situation

The oppressorThe oppressor

The victimThe victim

Overwhelming Overwhelming emotionemotion

Nazi concentration Nazi concentration campscamps

The SS guardsThe SS guards

MoslemsMoslems

Fear for their livesFear for their lives

Infantile AutismInfantile Autism

The family homeThe family home

The motherThe mother

The autistic childThe autistic child

Fear for their livesFear for their lives

Germany Germany

BETTELHEIM ON HOMICIDAL MOTHERSBETTELHEIM ON HOMICIDAL MOTHERS

““Despite the incredible variety of symptoms among the several hundred Despite the incredible variety of symptoms among the several hundred schizophrenic children we have worked with over the years, they all shared one 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 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 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 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 seem convinced death is imminent; that possibly it can be postponed just for moments through their not taking cognizance of life...moments through their not taking cognizance of life...

““I believe the initial cause of withdrawal is rather the childI believe the initial cause of withdrawal is rather the child’’s correct interpretation s correct interpretation of the negative emotions with which the most significant figures in his 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 beginsenvironment approach him. This is in turn evokes rage in the child until he begins——even as mature persons doeven as mature persons do——to interpret the world in the image of his anger. All 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 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 tragedy of children fated to become autistic is that such a view of the world happens to be correct for their world.happens to be correct for their world.””

-Bruno Bettelheim, -Bruno Bettelheim, The Empty FortressThe Empty Fortress, 1967, 1967

““Foremost among the handful of psychiatrists and Foremost among the handful of psychiatrists and psychologists who have dedicated themselves to unraveling psychologists who have dedicated themselves to unraveling the puzzle of autistic behavior is Bruno Bettelheim. No brief the puzzle of autistic behavior is Bruno Bettelheim. No brief review can do justice to his wisdom or his compassion.review can do justice to his wisdom or his compassion.””

- New York Times: February - New York Times: February 12, 1967 12, 1967

BERNIE RIMLAND ON THE THE REFRIGERATOR BERNIE RIMLAND ON THE THE REFRIGERATOR PARENT THEORY: “GUILTY UNTIL PROVEN PARENT THEORY: “GUILTY UNTIL PROVEN INNOCENT”INNOCENT”

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

--Infantile Autism, 1964Infantile Autism, 1964

““All my life, I have been working with All my life, I have been working with children whose lives were destroyed children whose lives were destroyed because their mothers hated them.because their mothers hated them.””

Bruno Bettelheim, 1981Bruno Bettelheim, 1981

Moral action and moral cognitionMoral action and moral cognition

TODAY’S MORAL ISSUETODAY’S MORAL ISSUEThe autism epidemic demands moral actionThe autism epidemic demands moral action

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

The increased rates vary by geography (implicating local exposures) The increased rates vary by geography (implicating local exposures) but the increases are pervasive (implicating non-local factors)but the increases are pervasive (implicating non-local factors)

The increases must result from environmental injury. Still, even The increases must result from environmental injury. Still, even though clear candidates have emerged, causation is complexthough clear candidates have emerged, causation is complex

The kind of environmental factors that can explain these injuries is The kind of environmental factors that can explain these injuries is short and requires the participation of skilled scientists to witnessshort and requires the participation of skilled scientists to witness

Society must take urgent action to reduce injuries, eliminate cause(s), Society must take urgent action to reduce injuries, eliminate cause(s), treat the injured and provide justice to the affected familiestreat the injured and provide justice to the affected families

TODAY’S INTELLECTUAL FAILURESTODAY’S INTELLECTUAL FAILURESMoral action face obstacles of moral cognitionMoral action face obstacles of moral cognition

Specific to autismSpecific to autism We can’t know We can’t know if there’s a crisisif there’s a crisis We shouldn’t seek to know We shouldn’t seek to know if vaccines increase riskif vaccines increase risk

Bigger than autismBigger than autism We need proof: We need proof: complexity of necessary and sufficient complexity of necessary and sufficient

causes causes from Koch’s Postulates to Bradford Hill Criteriafrom Koch’s Postulates to Bradford Hill Criteria

We need to trust Science: We need to trust Science: failures in governing progressfailures in governing progress The fight for the soul of the medical enterpriseThe fight for the soul of the medical enterprise

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““WE CAN’T KNOW”WE CAN’T KNOW”Epidemiological nihilismEpidemiological nihilism

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

- Craig Newschaffer - Craig Newschaffer

Department of Epidemiology, Center for Autism and Department of Epidemiology, Center for Autism and Developmental Disabilities Epidemiology, Johns Hopkins Developmental Disabilities Epidemiology, Johns Hopkins Bloomberg School of Public Health, Bloomberg School of Public Health,

““Investigating Diagnostic Substitution and Autism Investigating Diagnostic Substitution and Autism Prevalence Trends”, Prevalence Trends”, Pediatrics. Pediatrics. 20062006

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““WE CAN’T KNOW”WE CAN’T KNOW”No prospective studies?No prospective studies?

Results of Prospective NIH Collaborative Perinatal StudyResults of Prospective NIH Collaborative Perinatal Study55,908 pregnancies with births from 1959-66 followed up in formal 55,908 pregnancies with births from 1959-66 followed up in formal examinations at several points (Niswander & Gordon, 1972), includingexaminations at several points (Niswander & Gordon, 1972), including

Psychological exams at 8 months, 4 years and 7 yearsPsychological exams at 8 months, 4 years and 7 years Neurological exams at 1 year and 7 yearsNeurological exams at 1 year and 7 years Speech and hearing tests at 3 years and 8 yearsSpeech and hearing tests at 3 years and 8 years

Prospective birth sample used to study perinatal events in autismProspective birth sample used to study perinatal events in autism 30,000 computerized case records (Torrey et al, 1975)30,000 computerized case records (Torrey et al, 1975) 200 cases of abnormal development reviewed closely200 cases of abnormal development reviewed closely 14 cases of infantile autism, 6 additional cases close in 14 cases of infantile autism, 6 additional cases close in

symptomssymptoms rate of 4.7 per 10,000 for infantile autism, 6.7 per 10K ASDrate of 4.7 per 10,000 for infantile autism, 6.7 per 10K ASD

““Although the authors make no claim to having identified every Although the authors make no claim to having identified every autistic child among the 30,000 children, the prevalence rate of 4.7 per 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 10K live births is almost identical to that reported by Wing et al (1967), thus leading us to believe that most such children were (1967), thus leading us to believe that most such children were included.included.””

““WE SHOULDN’T SEEK TO KNOW”WE SHOULDN’T SEEK TO KNOW”Prospectively unethical, retrospectively Prospectively unethical, retrospectively impossibleimpossible

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

"Public health officials and the academic community are really trying to "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 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? 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 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." takes before the answer to that question is no."

He added that He added that it would be unethical to do a prospective study it would be unethical to do a prospective study in which in which some children were not vaccinated, given the known harms of failure to some children were not vaccinated, given the known harms of failure to vaccinate, and that vaccinate, and that retrospective studies would have methodological retrospective studies would have methodological issues issues because the groups would differ in characteristics other than their because the groups would differ in characteristics other than their vaccination status.vaccination status.

- Laurie Barclay MD- Laurie Barclay MD

Medscape Medical News, February 9, 2009Medscape Medical News, February 9, 2009

““WE SHOULDN’T SEEK TO KNOW”WE SHOULDN’T SEEK TO KNOW”Human experiments are an unethical policyHuman experiments are an unethical policy

The heart of an effective safety system is sound science.  The heart of an effective safety system is sound science.  The vaccine schedule has never been proven safe in The vaccine schedule has never been proven safe in animal or human trials that compare both the acute and animal or human trials that compare both the acute and chronic health status of vaccinated versus unvaccinated chronic health status of vaccinated versus unvaccinated individuals.  individuals.  The schedule must therefore be regarded as The schedule must therefore be regarded as an unethical experiment. an unethical experiment.  Ethical codes from Hypocrites to Ethical codes from Hypocrites to Nuremberg and their modern embodiments in law Nuremberg and their modern embodiments in law emphasize the physician’s duty to the individual patient, emphasize the physician’s duty to the individual patient, especially the mandate to avoid harm.especially the mandate to avoid harm.

-SafeMinds public comment letter to-SafeMinds public comment letter to

National Vaccine Program Office, National Vaccine Program Office, March March

31, 200931, 2009

““WE NEED PROOF” WE NEED PROOF” The classic standard in germ theoryThe classic standard in germ theory

Koch’s PostulatesKoch’s Postulates

1.1. The microorganism must be found in abundance in all The microorganism must be found in abundance in all organisms suffering from the disease, but should not be organisms suffering from the disease, but should not be found in healthy animals. found in healthy animals.

2.2. The microorganism must be isolated from a diseased The microorganism must be isolated from a diseased organism and grown in pure culture. organism and grown in pure culture.

3.3. The cultured microorganism should cause disease when The cultured microorganism should cause disease when introduced into a healthy organism. introduced into a healthy organism.

4.4. The microorganism must be reisolated from the inoculated, The microorganism must be reisolated from the inoculated, diseased experimental host and identified as being identical diseased experimental host and identified as being identical to the original specific causative agentto the original specific causative agent

What happens when the microbe is necessary but not sufficient?What happens when the microbe is necessary but not sufficient?

““WE NEED PROOF” WE NEED PROOF” The rising standard for environmental The rising standard for environmental causationcausation

Criteria for causal relationships according to Austin Bradford HillCriteria for causal relationships according to Austin Bradford Hill

1. Strength of the association1. Strength of the association

2. Consistency of the observed association2. Consistency of the observed association

3. Specificity of the association3. Specificity of the association

4. Temporality of the association4. Temporality of the association

5. Biological gradient or dose response curve5. Biological gradient or dose response curve

6. Biological plausibility6. Biological plausibility

7. Coherence of the association 7. Coherence of the association

8. Experimental data8. Experimental data

9. Analogy to other diseases9. Analogy to other diseases

What happens when the exposures are sufficient but not necessary?What happens when the exposures are sufficient but not necessary?

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

Medical industry

Health consumers

Scientists

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

Role of evidenceRole of evidence

Sociology of scienceSociology of science

Governance modelGovernance model

Trust in…Trust in…

Evidence-based medicineEvidence-based medicine

Consensus science = Consensus science = truthtruth

(trust the scientific (trust the scientific process)process)

Public/private Public/private partnershipspartnerships

Authority Authority

Outside The MatrixOutside The Matrix

Weaponized knowledgeWeaponized knowledge

Chains of collective Chains of collective reasoningreasoning

(sustained consensus (sustained consensus errors)errors)

Commercialized medicineCommercialized medicine

FreedomFreedom

Medical Industry LensMedical Industry Lens

Invisible and visible violenceInvisible and visible violence

VISIBLE VS. INVISIBLE VIOLENCEVISIBLE VS. INVISIBLE VIOLENCEA risky analogyA risky analogy

Visible violence Invisible violence

Priority of the state

National socialism Public health

Call to action Fight (eradicate) the infection

Control (eradicate) the disease

Career ambition Adolf Eichmann Intellectual politicians

Fear of protest Good Germans Just scientists

Scale of the problem

The Holocaust(6 million)

The autism epidemic(<1 million but rising)

Parallelism is not the same as proportionality

THE SCALE OF THE PROBLEMTHE SCALE OF THE PROBLEM

0

500,000

1,000,000

1,500,000

2,000,000

2,500,000

1930 1940 1950 1960 1970 1980 1990 2000 2010 2020 2030

Constant prevalence

US autism population

Epidemicincrease

The moral responsibility of The moral responsibility of intellectuals as witnessesintellectuals as witnesses

THE GUT CHECK FOR SCIENTIFIC THE GUT CHECK FOR SCIENTIFIC INTELLECTUALSINTELLECTUALS

What he didWhat he did

Responded to parent Responded to parent requests for carerequests for care

Published a case series Published a case series and followed up on new and followed up on new theorytheory

Expressed concern over Expressed concern over the safety of a the safety of a commercial productcommercial product

Supported monovalent Supported monovalent vaccinesvaccines

Continued his research, Continued his research, which is widely which is widely replicatedreplicated

Conclusive primate Conclusive primate researchresearch

What they didWhat they did

Lancet published the Lancet published the paperpaper

Lancet editor Horton, Lancet editor Horton, showing cowardice but showing cowardice but claiming high principle, claiming high principle, turns on studyturns on study

Some co-authors “retract Some co-authors “retract the interpretation”the interpretation”

Brian Deer, in Murdoch Brian Deer, in Murdoch paper, begins character paper, begins character assassinationassassination

Deer and Horton coach Deer and Horton coach GMC on charges GMC on charges

The Wakefield Inquisition: The Wakefield Inquisition: 120+ days and counting120+ days and counting

WHAT IS TO BE DONE?WHAT IS TO BE DONE?

Intellectuals witness and report invisible violenceIntellectuals witness and report invisible violence

Intellectuals enable invisible violence by disabling moral cognitionIntellectuals enable invisible violence by disabling moral cognition

The human toll of invisible violence is rising and needs witnessesThe human toll of invisible violence is rising and needs witnesses

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

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

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