When Robert F Kennedy Jr announced a majorprojectto track the health of people with autism, autistic people and their friends and families reacted with shock and anger.
They also expressed dismay and concern over the US health secretary’s incorrect and “weird” approach to autism spectrum disorder.
Kennedy, in his leadership of the US Department ofHealthand Human Services, has pushed out the leading regulatory official on vaccines, fired thousands of employees, floated a plan to end support services for disabled people, and promulgated misinformation about an autism “epidemic” that “destroys our greatest resource”, referring to children.
“We have to recognize we are doing this to our children, and we need to put an end to it,” Kennedy said at a recentpress conference.
Such views are out of step with the science and the approach of the general populace in understanding, accepting and supporting people with autism, advocates say, expressing worry for the future of health in the US under Kennedy’s leadership.
International Guardian readers fear this rhetoric will expand beyond US borders.
“This is not just some random blogger saying this,” said Seth Taylor, 34, an actuary, political volunteer and autism advocate in Georgia. Kennedy has “an important position” overseeing health and human services agencies, Taylor said. “RFK Jr needs to recant his remarks, kill the [autism] registry, and actually sit down with autistic folks like myself and better understand us.”
Nearly 200 people got in touch with the Guardian to express their concerns about the health secretary’s comments and the ways critical research and support services are being dismantled.
They also highlighted the ways autism shapes their identities and their lives.
Taylor was first diagnosed with autism as a non-speaking two-year-old. His world “opened up thanks to early diagnosis, therapy, and a mom who saw my brain not as a defect, but as something different and beautiful”, he said.
“My autism drives my hyperfocus and advocacy, proving neurodiversity is a strength and not a tragedy, as RFK Jr suggests … [and] showing autistic people belong in leadership.Autismisn’t a barrier. It’s part of who I am, and I wouldn’t trade it for the world,” he said.
When Kennedy blames families for introducing “environmental toxins” despite autism being overwhelmingly caused by genetics, Taylor said, it perpetuates stigma about the condition. The search for a “cure” distracts from the “real needs” of autistic people like services, support, accommodations and dignity in schools, workplaces and communities.
Kennedy’s rhetoric “would almost be laughable, if it weren’t so dangerous”, said Leanne Maskell, 32, an autism and ADHD coach, trainer and author in London.
“Autism is a neurodevelopmental condition impacting the brain’s structure. It’s like having a different operating system, like Google vs Apple – not something to fix,” she said.
Jeremy, 36, is a trucker in Illinois. Jeremy and others cited in this piece asked not to be identified by last name, or to use pseudonyms denoted by *, in order to talk about sensitive health matters.
Jeremy and his wife are autistic, and it runs in both of their families. He said he wishes Kennedy understood the condition he rails against.
“I find his conclusions about a condition I doubt he’s done any real research about insulting,” Jeremy said. “To act like my entire immediate family is part of an epidemic is infuriating and terrifying.”
Jeremy and his wife worry about the database of autistic people being compiled, and fear it could be used to send people to work camps, as Kennedy hasproposeddoing for people who take legal and illegal medications.
A sweeping autism database drawing on personal data “risksHipaaviolations and echoes eugenics”, Taylor said. “Autistic people need support, not surveillance.”
Some individuals and parents are now wondering if getting a diagnosis is worth the risks of being tracked in the database or facing greater scrutiny and discrimination.
Jeff*, 43, a cybersecurity consultant in Wisconsin, had an appointment to be tested for autism in May. “I canceled the appointment upon hearing of RFK Jr’s plans,” he said. “I don’t want my probable diagnosis to be on a government registry, where it may come back to haunt me.”
For some, getting a diagnosis is required to qualify for some supportive services.
One of Roxie Riemann’s children, Ellowyn, has an official diagnosis and is considered disabled by the state.
“For her to even get any sort of help, they get to label her, and it’s unfortunate – but she gets physical therapy and speech therapy because of it, and we’ve met some really interesting people who love my kid as much as I do,” said Riemann, a parent in Birmingham, Alabama.
“The kids aren’t broken. My three-and-a-half-year-old, she can’t write a poem, but she adds to the poem of my life. The idea that people are reduced to whether or not they’ll pay taxes – that’s what contributes to society? Not someone’s joy or the impressions that they give, all the things that can’t be checked on a balance sheet?”
Kennedy has also said autism rates have exploded in recent decades, claiming that when he was a child, very few people were diagnosed.
But scores of people told the Guardian they were only diagnosed as adults, because of reduced stigma, changes in how ASD is diagnosed, and more knowledge among the public about what autism is.
Elizabeth*, 77, a retired teacher in Oregon, was only diagnosed at the age of 75 after a series of YouTube videos made her understand the issues she had dealt with her whole life.
“Since I was diagnosed as autistic, I am still re-evaluating my life through a different lens,” she said. “I have a master’s degree. I have had a couple of successful careers and have a comfortable retirement income. I raised two successful children and have a gentleman friend. And I always paid my taxes.”
Brian, 70, a retired teacher, educator and librarian in Massachusetts, was also formally diagnosed later in life, in his 50s. He endured highly invasive procedures as a baby, including having holes drilled into his head to “relieve the pressure” and stop “seizures”, since his behaviors were believed to be related to epilepsy.
“As it turned out, my brain was just trying to find its way,” Brian said.
While autism spectrum disorders are now being diagnosed at higher rates, they are stillunderdiagnosed.
“It is difficult to be diagnosed with ASD as an adult in Alabama. Even kids can be on a waiting list for years,” said Bryan McClelland, 35, who lives in Birmingham and is married to Riemann.
He and his children “are individuals, like others, in a misunderstanding world trying to survive”, McClelland said. “Saying publicly without evidence that autism is something preventable detracts from the reality that we already exist and probably always have. It removes our rightful place amongst humanity and makes us a problem that needs solving.”
Some of those who support Kennedy interpreted his references to an “environmental toxin” as a code for vaccines.
Kat, 42, in Illinois, gave up a corporate career to care for her son, Ian, who has autism. Now, she helps support other families with autism.
Ian was developmentally delayed from a young age, and diagnosed with autism before his third birthday. He is non-speaking, but learning to use a device to communicate.
“I don’t need a new son. I got a good one,” she said. “We wouldn’t want to take his autism from him, even if that is possible, which it is not. What we want is more support.”
Kat wants Ian to have more options for support – good options that offer him choices, just like anyone else.
“We need well-trained and thoroughly vetted professionals to work with him. He needs safe and supported small-group living situations when he is an adult. He needs job training, and job openings, and he needs to be able to keep his earned money without being punished by the government for making a (hopefully) living wage. We need understanding from insurance companies, medical professionals, and the general public.”