autism one environmental symposium may 22, 2009 the intellectual and moral failures of autism...
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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
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
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