When it comes to developmental disability, the Kennedy legacy is as storied as anywhere else. In 1961, President John F. Kennedy appointed the President’s Panel on Mental Retardation (PPMR), a blue-ribbon initiative designed to put forward a national plan of action for what we today refer to as intellectual disability. Many of PPMR’s recommendations were present in the last bill Kennedy would sign before his assassination in 1963. They would be further advanced by his brother, Sen. Ted Kennedy, who in 1970 would champion the Developmental Disabilities Act, broadening the law to encompass other diagnoses (including cerebral palsy and autism) while establishing an infrastructure for research, rights protection, and services-planning that would bring tens of thousands out of institutions and into community life.
No doubt Health and Human Services Secretary Robert F. Kennedy Jr. hoped to bring to mind this history when standing in the Roosevelt Room with President Trump repeating long since debunked claims linking autism to vaccination and elevating unproven theories attributing it to acetaminophen.
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But watching the press conference, I found myself thinking of another very different episode in the Kennedy family’s disability history: PPMR’s strange and largely forgotten trip to the Soviet Union.
It began at the behest of President Kennedy himself. PPMR had been established at the urging of his sister, Eunice Kennedy Shriver, mindful of the terrible fate that had befallen Rosemary, another Kennedy sibling whose mild intellectual disability had been hidden from the public until a lobotomy authorized by their father rendered her severely impaired. Like Eunice, the president believed his family had a special obligation to people with intellectual disability, but he also saw an opportunity to leverage the issue to cool tensions in the rapidly accelerating Cold War. After appointing PPMR’s membership, he asked them to find out what the Soviets were doing on intellectual disability in hopes of arranging a scientific exchange. The panel would soon dispatch a delegation to the Soviet Union, where they would make a series of observations with profound relevance to last week’s autism pronouncements from the White House.
According to an oral history from PPMR Chair Leonard Mayo, the 1963 visit began inauspiciously, with Soviet authorities limiting official contact between PPMR and some of the leading disability researchers in the country, forcing the American delegation to rely on private conversations.
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Political considerations seemed to pervade the Soviet study of intellectual disability. The Soviets had prohibited intelligence testing in 1936, concluding (accurately at the time) that the tests “discriminate against the peasants and the working class in favor of the culturally advantaged.”
But state doctrine still rejected Mendelian genetics as incompatible with Marxist-Leninism. Soviet authorities thus instructed researchers that intellectual disability could not be found to be genetic. While American researchers then considered social, economic and cultural deprivation in inner cities as another plausible cause of many cases of intellectual disability, the Communist Party insisted that no such circumstances could exist within the Soviet Union, rendering socioeconomic factors similarly politically untenable. An organic cause was thus required before any diagnosis they made.
Seeking to reconcile their political directives with their charge to provide services to many people for whom no clear physiological cause of cognitive impairment could be located, Soviet diagnosticians would study electroencephalogram readouts for even “very minor physical defects” to allow them to attribute a diagnosis to an acquired brain injury. “The EEG has saved special education for the debiles [people with mild intellectual disability] of the Soviet Union,” noted two PPMR delegates wryly in an article penned in the journal Exceptional Children.
Despite this, the Americans noted that the Soviet special education classrooms contained children very similar to those in the United States, suggesting that Soviet special education personnel were largely working around political constraints to deliver a diagnosis.
Still, one big difference surprised them: dramatically different prevalence rates. While President Kennedy would soon announce to the nation in a televised address that “there are between 5 and 6 million mentally retarded children and adults — an estimated 3 percent of the population,” Soviet estimates put prevalence at no more than 1%. What was going on?
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The American PPMR delegates speculated wildly. Perhaps it had to do with Soviet slum clearance efforts, socialized medicine, or the legalization of abortion? Arguing in the opposite direction, the differences in prevalence seemed to come largely at the milder end of the intellectual disability spectrum, prompting them to wonder if the Soviets were simply not diagnosing many of the people who received a diagnosis in the United States.
But the day before they left the country, the Americans stumbled upon another explanation that argued the two countries had a difference in diagnostic practices rather than the Soviets having truly lower levels of impairment. V. Doulnev, the head of the Department on Retarded Children at the Soviet Institute of Defectology, insisted that he “could not believe that there were five million mentally retarded in the United States” and insisted that this high prevalence could only be explained by the high reliance American schools and institutions placed on intelligence testing. After some back and forth, however, Doulnev granted that it might be possible to approach a figure of 3% if one included “all forms of intellectual subnormality.”
The decades that would follow would strengthen the argument for explaining the difference as one of diagnostic patterns. Intellectual disability rates in the U.S. declined over time. The diagnosis — which had been referred to as “feeble-mindedness” before the midcentury switch to mental retardation — had expanded dramatically in the first half of the 20th century, as the American eugenics movement sought to brand large swaths of immigrant, low-income, and minority populations as cognitively impaired for political purposes. Used alone, it had always been something of a diagnosis of exclusion, applied in the absence of a better understanding for a person’s cognitive, developmental, or, in some cases, economic or political difficulties. As researchers developed a more sophisticated understanding of developmental disability, many of the 3% cited by President Kennedy in 1963 were shifted into other diagnosis categories — autism prominent among them.
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From its earliest history, autism had always been a diagnosis that encompassed an extraordinarily broad range of impairment. The first American to receive an autism diagnosis, Donald Triplett, was institutionalized in childhood, brought back home by his parents after a year, and would then go on to attend college and work at a local bank until retirement. Nevertheless, Leo Kanner, popularly (and erroneously) credited as the discover of autism, would insist that the diagnosis was rare, contributing to relatively restrictive diagnostic practices.
But the codification of autism in the DSM-III in 1980 and the subsequent inclusion of Asperger’s syndrome in the DSM-IV in 1994 (later to be combined into a single autism spectrum disorder diagnosis in the DSM-5 in 2013) would lead to substantial increases in autism diagnosis. Many (including me) who received a diagnosis on the autism spectrum would have been given other diagnoses in prior generations or no diagnosis at all as the broader criteria provided a framework for understanding autism more in line with its early history.
In 2006, the prestigious scientific journal Pediatrics published research showing that that as autism was used more frequently as a diagnosis for special education services, corresponding declines took place in the use of “intellectual disability” and “learning disability,” suggesting that a process of diagnostic substitution was taking place rather than a real increase in autism prevalence. Though subsequent research has further documented that this diagnostic substitution is an important driver behind the increase in autism diagnoses, the study still faced a storm of criticism from autism parent groups wedded to the pseudo-scientific idea that autism is caused by vaccination, accusing the study’s author of “epidemic denial” for showing that the data did not support their claims that autism constituted a new and unprecedented epidemic transforming the nation’s children through vaccination. Though anti-vaccine sentiment and claims of an epidemic were then routine in autism parent advocacy, they have since been shifted to the margins.
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Unfortunately, recent press releases from the White House and HHS reiterating this rhetoric suggests that Secretary Kennedy is taking his cues on autism from the die-hards of an earlier era in autism advocacy. As in many other arenas, the Trump administration seeks to resurrect an older generation’s bad ideas.
In addition to changing criteria and diagnostic substitution, improved access to diagnosis has also played a role. The most recent autism diagnosis report from the Centers for Disease Control and Prevention reported that previous patterns of lower rates of diagnosis among racial and ethnic minority groups and lower socioeconomic status households had ameliorated and even shown some signs of reversing in some parts of the country. Closing racial and socioeconomic gaps has also played a role in autism’s rise. The ratio of male to female autism diagnoses has also been dropping over time as diagnosis has improved, though this does not rule out the possibility of some real sex differences in prevalence.
Watching Kennedy and Trump last week, I was struck by how much of their claims rested on a single faulty premise: that the disability we today call autism is in fact more common today than it was in prior generations. But researchers, autistic people, and families have long argued that the data doesn’t support autism as a recent epidemic. Unfortunately, the Trump administration has set aside the scientific evidence pointing in the direction of diagnostic substitution, broadened criteria, and improved access to diagnosis as more plausible sources for rising diagnosis rates. Much as PPMR observed in the midcentury Soviet Union, the Trump administration’s political ideology forces our public officials to parrot the party line rather than undertake a dispassionate analysis of the evidence.
Worse still, even as this ill-conceived project is presented as a benefit to autistic people with the most severe impairments, the Trump administration has proposed to eliminate parts of the Developmental Disabilities Act — a further blow after pushing through a trillion-dollar cut to Medicaid, the program that funds the great majority of services received by autistic people and those with other disabilities. Even as he wraps himself in his family’s storied history, Kennedy seems determined to make himself an accomplice in wiping their greatest achievements from the earth.
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No doubt many of those who are participating in such things see the folly at the heart of such an agenda. But just as Soviet researchers had to take their cues from Communist doctrine, under this administration our nation’s scientific and public health leadership must subordinate their reasoned judgment to the political needs of the president. That’s no way to do science or advocacy. The American people — autistic and neurotypical alike — deserve better.
Ari Ne’eman is an assistant professor of health policy and management at the Harvard T.H. Chan School of Public Health. He is the author of a forthcoming book on the history of American disability advocacy over the past 200 years. He co-founded the Autistic Self Advocacy Network and served as its executive director from 2006 to 2016.