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Boston Globe

‘That rhetoric is deadly': Autistic individuals, family members express mixed feelings about RFK Jr.'s comments on autism

Their opposing perspectives reflect a rift within the community as the nation's top health official, Robert F. Kennedy Jr., Some said his remarks were dangerous and offensive, while others felt heard. 'It's wonderful that he's doing this, and [Kennedy] was right: the future is very bleak for people with autism,' said Hitsos, an alumna of Gordon College in Wenham who now attends graduate school in Texas. Advertisement But Trainor sees a future bright with promise despite his diagnosis. At 15, he works in the kitchen at his school, produces music on the side, and hopes to have a career working with animals. 'So many on the spectrum end up getting jobs,' said Trainor, who has a moderate form of autism that requires substantial support on communication issues. The condition has no cure and doesn't require one, he believes. His 16-year-old brother, John, also has autism, but a milder form that requires less support. He said Kennedy fails to acknowledge that many people with the syndrome are on the lower end of the spectrum and can have full lives. 'I have seen a lot of people treat ASD [Autism Spectrum Disorder] as some sort of disease that needs to be 'cured,' which is very offensive towards people like me,' John Trainor, a student at Bristol Plymouth Technical High School, said in a statement. 'We are normal people who have a much harder time socially.' Advertisement Autism is a developmental disorder that research has linked with genetics and certain conditions before and during birth, such as prenatal exposure to pollution or pesticides and Kennedy has long promoted controversial theories that external factors, such as vaccines, are to blame, and pledged his new research effort would determine the cause of the 'autism epidemic' by September. 'These are kids that, this is a preventable disease. We know it's an environmental exposure,' Kennedy Those remarks came after a report from the US Advocates and experts say the higher prevalence is explained by better detection methods and awareness of the disorder. Indeed, the CDC Several of the nation's leading autism organizations condemned Kennedy's words and actions, describing them as hurtful and untrue. Advertisement 'His comments were incorrect, but more to the point, they were eugenic,' said Colin Killick, executive director of the Autistic Self Advocacy Network, which advocates for disability rights. 'Talking about autistic people as themselves being destroyed but also having destroyed their families is a horrific argument.' While disagreeing with Kennedy, Killick said the autism community would welcome additional research, such as why people with autism have a higher incidence He added that most new cases involve higher functioning people who need less support and disputed the notion they needed to be cured. 'Autism is a way of thinking, it is fundamentally ingrained into how a person interacts with the world,' Killick said. 'The idea that you would give someone a pill and magically make them non-autistic — you would essentially be making them an entirely different person.' Julie DeFilippo, a social worker who works with autistic individuals and their families and has an autistic son, said some families were already wary of receiving an official diagnosis. She worries Kennedy's rhetoric will create additional stigma that will discourage some from seeking out support. 'I could say as a parent of an autistic kid, I get hundreds of moments of joy every day. That's the easy part — being at home and supporting him,' she said. 'The hard part is the world outside and putting him out there and the experiences of him being misunderstood.' Hitsos, on the other hand, said that while she understands many people on the spectrum are 'happy' with being autistic, she is not. Advertisement 'Every day is a struggle with the littlest of things,' she said. 'I don't want other people to go through it, especially those with profound autism.' Now studying to become a music teacher, Hitsos said she has tried to get a job for years, but suspects her efforts failed because of her openness online about having the disorder. She also expressed concern the autism community has given up on finding a cause and cure and settled for 'acceptance and inclusion.' 'Acceptance is good, I've been a self-advocate for years, but this is an epidemic, and until they find a cause for it, this is only gonna get worse,' she said. But Killick wants Kennedy to be more aware of the effects of his words on the autism community. Every year, his organization participates in a 'That rhetoric is deadly,' he said, 'and hearing our nation's highest health official telling the world that autistic people destroy their families and implying that autistic people's lives aren't worth living is frightening, and it's going to have consequences.' Emily Spatz can be reached at