THE INTELLECTUAL AND MORAL FAILURES OF AUTISM SCIENCE
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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, (citing his 1943 article, “Individual and Behavior in Extreme Situations”)
1967 Mass
BETTELHEIM’S VIEW OF THE ETIOLOGY OF AUTISM
Germany Extreme situation Nazi concentration camps Infantile Autism The family home
The oppressor
The SS guards
The mother
The victim
Moslems
The autistic child
Overwhelming emotion
Fear for their lives
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 industry
Health consumers
Scientists
THE FIGHT FOR THE SOUL OF THE MEDICAL ENTERPRISE “We need to trust Science”
Medical Industry Lens Role of evidence Evidence-based medicine Outside The Matrix Weaponized knowledge
Sociology of science
Governance model
Consensus science = truth (trust the scientific process) Public/private partnerships
Chains of collective reasoning (sustained consensus errors) Commercialized medicine
Trust in…
Authority
Freedom
Invisible and visible violence
VISIBLE VS. INVISIBLE VIOLENCE A risky analogy
Visible violence Priority of the state Call to action Career ambition Fear of protest Scale of the problem National socialism Fight (eradicate) the infection Adolf Eichmann Good Germans The Holocaust (6 million) Invisible violence Public health Control (eradicate) the disease Intellectual politicians Just scientists The autism epidemic (<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
1,500,000
Constant 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
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, (citing his 1943 article, “Individual and Behavior in Extreme Situations”)
1967 Mass
BETTELHEIM’S VIEW OF THE ETIOLOGY OF AUTISM
Germany Extreme situation Nazi concentration camps Infantile Autism The family home
The oppressor
The SS guards
The mother
The victim
Moslems
The autistic child
Overwhelming emotion
Fear for their lives
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 industry
Health consumers
Scientists
THE FIGHT FOR THE SOUL OF THE MEDICAL ENTERPRISE “We need to trust Science”
Medical Industry Lens Role of evidence Evidence-based medicine Outside The Matrix Weaponized knowledge
Sociology of science
Governance model
Consensus science = truth (trust the scientific process) Public/private partnerships
Chains of collective reasoning (sustained consensus errors) Commercialized medicine
Trust in…
Authority
Freedom
Invisible and visible violence
VISIBLE VS. INVISIBLE VIOLENCE A risky analogy
Visible violence Priority of the state Call to action Career ambition Fear of protest Scale of the problem National socialism Fight (eradicate) the infection Adolf Eichmann Good Germans The Holocaust (6 million) Invisible violence Public health Control (eradicate) the disease Intellectual politicians Just scientists The autism epidemic (<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
1,500,000
Constant 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
