Kennedy's autism crusade ignores history, including his own family's

Yahoo

02-06-2025

In the telling of President Trump and his Health and Human Services secretary, Robert F. Kennedy Jr., autism in the U.S. has exploded in the past decades with seemingly no explanation.
These claims skip over a mountain of data and touch on the country's dark history around treating people with neurological and developmental differences, including within Kennedy's own illustrious family.
'We are indeed diagnosing autism more than ever before in history. I mean, that's just a fact,' Andy Shih, chief science officer at the nonprofit Autism Speaks, told The Hill.
While Kennedy insists external factors like vaccines must be to blame, experts instead believe the trend is a reflection of an improved understanding of neurodivergence within the medical community.
'We think that the increases are due to the fact that there's greater awareness that there are tools now that allow us to screen systematically with children at certain ages, certain stages of development,' Shih said.
Autism, like many diagnoses, does not exist in a vacuum. Its perception and detection have changed drastically within the last century, with much of that change occurring throughout Kennedy's lifetime.
The exact cause of autism is unknown, but the current scientific consensus is that it's a complex amalgamation of genetic predispositions and environmental factors.
'We used to compare autism to what we call complex disorders or complex diseases like heart disease and lung disease, where there's certainly a genetic predisposition, but environment influences certainly affect outcome,' Shih said.
'Now we look at autism not as a medical condition, but part of the richness of human variation.'
Kennedy vowed to find the cause of autism by September of this year, suggesting that 'environmental toxins' in food and medicine are the likely culprits.
Since autism was first diagnosed, numerous causes have been suggested, several of which have been discredited.
In the mid-20th century, Austrian American psychologist Bruno Bettelheim proposed that emotionally distant parenting by so-called refrigerator mothers was the cause of autism, and he called for removing diagnosed children from their parents.
Kennedy has long put his support behind the theory that vaccines could cause autism, but analyses, including those conducted by the Centers for Disease Control and Prevention (CDC), have found no link between immunizations and autism spectrum disorder.
Kennedy's stated goal for finding the cause of autism is to prevent it from occurring. During an April press conference, he said children with autism will go on to be burdens on their families and society.
'These are kids who will never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date. Many of them will never use a toilet unassisted,' Kennedy said.
'Autism destroys families,' he added.
As to whether autism can be prevented, it's unclear. And some experts question the necessity, and ethics, of such an endeavor.
'Is it environmental exposure? Is it maternal or paternal age? We don't know the answers to that,' said Nicole Clark, CEO and co-founder of the Adult and Pediatric Institute.
'We absolutely should be funding scientific research to try to get to the bottom of that. But the comments that he makes of 'we should prevent autism.' Those comments get very close to eugenics.'
Clark is also the mother of children with autism.
'Those comments start to weed into anyone that is different should be prevented,' she added.
According to the CDC, 1 in 31 children and 1 in 45 adults in the U.S. have autism. This is a stark difference from just a few decades ago, when roughly 1 in 150 children were diagnosed with autism spectrum disorder.
But autism as a diagnosis is a historically recent development. The first person considered to be diagnosed with autism, an American banker named Donald Triplett, died in 2023 at the age of 89. He was diagnosed in 1943, 11 years before Kennedy was born.
Autism was first added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) as a psychiatric disorder connected to schizophrenia in 1968. It wasn't until 1980 that the DSM was updated to reflect autism as a developmental diagnosis separate from schizophrenia.
The standards and criteria for diagnosing autism have also broadened over the years. But increased diagnoses don't necessarily mean increased occurrence.
'We can see a couple things that indicate that what's going on is that our ability to recognize and diagnose autism is improving, rather than that the actual rate of autism occurring in the population is going up,' said Zoe Gross, director of advocacy at Autistic Self Advocacy Network.
Diagnosis substitution is a phenomenon in which the labeling of one condition is replaced by another over time as knowledge and understanding change. Applying our current day understanding of autism spectrum disorder reveals broad areas for potential diagnosis substitution.
'We see that as we learn more about autism, people who clearly show the traits of autism but would in the past have been given just a diagnosis of intellectual disability, now have an autism diagnosis,' Gross explains.
Another factor contributing to increased diagnoses is that many people with autism spectrum disorder may appear to have no intellectual disability.
'Rates of autism without intellectual disability, that is increasing faster than diagnoses of autism with intellectual disability, which shows that if that group that would have been missed in the past that is making up the larger portion of the increase in diagnoses,' said Gross.
A report from 2023 that reviewed information from 2000 to 2016 found that 26.7 percent of children with autism spectrum disorder had profound autism. But there is nuance within that group, too.
'When they did that study, they defined profound autism as having a measured IQ below 50, or being nonspeaking, or being mostly nonspeaking. So, any of those three things, or any combination of those three things, you would get put in that category,' said Gross.
Despite being lumped together, many people with autism spectrum disorder who are nonverbal or mostly nonverbal are capable of productive activities, which Gross notes can include writing poetry.
Gross noted that when Kennedy was growing up, 'the diagnosis of autism wasn't even in the DSM.'
According to Gross, to be diagnosed with autism in the '40s and '50s, when Kennedy was growing up, was 'very rare,' as only a few clinicians would have been able to identify it.
Kennedy has claimed that he's never seen someone of his generation with 'full-blown autism,' which could be partly explained by how many of these individuals were hidden away from wider society.
Up until the mid-20th century, a large proportion of children perceived to be mentally or neurologically disabled were put in institutions where they were often subjected to extreme neglect. Institutionalization reached its peak in the '50s and '60s.
'If you look at statistics about the disabilities and needs of people who are in institutions around the time when they started to close in the '60s and '70s, you'll see that many of those people had exactly those kinds of disabilities and needs that Secretary Kennedy describes,' said Gross.
'Families would be told … 'You should forget all about them, try to have another child and move on with your life,'' Gross added. 'So, a very kind of coldhearted approach to society's responsibility to care for people with intellectual and developmental disabilities.'
Beginning in the '60s, parents began moving away from institutionalization, choosing instead to keep their children at home. The Kennedys were early adopters of this choice, at least in the beginning.
Rosemary Kennedy, born in 1918, was the eldest daughter of Joseph and Rose Kennedy and aunt to the current Health secretary.
Developmental delays were observed early on in Rosemary's life; she was slower to walk and speak than her brothers and had difficulty concentrating. She is also remembered as having had a bright personality in her youth.
It's unclear if Rosemary had autism or another developmental disorder. But with these traits, the Kennedys would have been advised to institutionalize Rosemary.
'But Rose Kennedy, their mother and that would be Bobby Kennedy Jr.'s grandmother, didn't believe in that, and she thought the best place for Rosemary was at home,' historian Kate Clifford Larson, author of the book 'Rosemary: The Hidden Kennedy Daughter,' told The Hill.
'So, they diverged from what was going on in general in the public at the time.'
Joe Kennedy, who Larson describes as 'nervous and afraid,' consented to having Rosemary lobotomized in her early 20s, rendering her incapacitated and institutionalized for the rest of her life. She died in 2005.
According to Larson, this choice to raise Rosemary along with her other siblings, and her subsequent disappearance from their lives, had a profound impact on the entire family, including RFK Jr.'s father, the senior Robert F. Kennedy.
'He was 14, 13 when she was lobotomized, so he was cognizant, whereas Ted was a little bit younger. So, they were all affected, and they missed her, because it was a very, very tight family,' said Larson. 'Bobby missed her, too, and like his brother, Jack, once they got power in the government, they started making changes.'
Rosemary's sister Eunice Kennedy Shriver went on to found the Special Olympics, the largest sports organization for children and adults with intellectual disabilities. Eunice's son, Anthony Shriver, founded the group Best Buddies International, which connects people with intellectual and developmental disabilities with friends and mentors.
'Bobby Jr., he was part of that. He saw his family do all these things all those years,' said Larson. 'He visited those horrific institutions as a teenager and young man. He saw how horrible they were. And so, for him today to say that those things didn't exist, that autism and these other illnesses did not exist before vaccines, is crazy.'
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