RFK Jr.’s controversial comments draw ire at Minnesota autism convention

A hotel convention center in Bloomington was filled on Friday with people affected by autism who have held jobs, written poetry and played sports — defying the negative characterizations of U.S. Health Secretary Robert F. Kennedy Jr.

Attendees at the Autism Society of Minnesota’s annual conference said they were upset by Kennedy’s comments, which they said underestimated the capabilities of some people with autism and marginalized others.

“Autistic children are listening to what you’re saying,” said an upset Maren Christenson Hofer, a Minneapolis parent of a 13-year-old seventh-grader with autism.

Kennedy made his comments Wednesday when he ordered the National Institutes of Health to investigate potential environmental origins for autism and its prevalence. The Centers for Disease Control and Prevention earlier in the week had estimated that one in 31 children aged 8 years had autism spectrum disorder and that it was three times more common among boys than girls. In 2000, the comparable prevalence rate was one in 150, although there is debate over how much of the increase may simply be due to more and better screening.

“They’ll 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,” the nation’s top health official said of children with autism.

Even if the secretary was trying to inspire sympathy and compassion, his words perpetuated stereotypes that people with autism have fought for years, said Zephyr James, marketing director for the state autism society.

James was diagnosed as an adult with autism, and she said she writes poetry. She doesn’t play baseball because she doesn’t really like the sport, but she tried T-ball as a child. The 34-year-old is more into swimming, rock climbing and circus stunts. But whether someone with autism can do any of these things isn’t the point, she said.

“It really implies that if you can’t do some of the things he mentioned ... I guess you’re not a worthwhile person,” she said.

Autism impacts how people perceive and socialize with others, but how it manifests itself varies dramatically. Some people develop repetitive patterns, while others are reclusive or sensitive to noise and light. Some have learning problems, while others have high IQs but trouble expressing what they learn and know.

Minnesota’s annual conference for 30 years has brought together families dealing with autism and offered advice and support from professionals and parents. Some attendees said they shared Kennedy’s curiosity over possible environmental origins or toxins that could be contributing to the rise in autism, but they prioritized federal spending on support services over an epidemiological quest.

Kennedy pledged transparency as he directs federal agencies into a “massive testing and research effort” to discover autism’s origins. But advocates said they are suspicious of his motives, noting that he has long espoused a belief that childhood vaccinations are at fault, despite numerous studies to the contrary.

“If you come to this conversation with good intentions, then you talk to the people who are affected by what you’re saying and you make sure that you’re on the same page and you make sure that your words aren’t causing harm. That was not the case,” said Christenson Hofer, who also directs a support agency for multicultural families that are dealing with the neurodevelopmental disorder.

Christenson Hofer said her son is a swimmer and voracious reader, especially about marine biology. He has read his own poetry in public, she added.

Measles vaccination rates have declined in Minnesota, particularly in its African immigrant community that remains suspicious over the autism link. If there was a link, autism rates should have declined in lockstep with the decline in vaccinations, public health officials say. But that hasn’t happened. However, measles cases have increased; 70 were reported last year and two have been identified in Minnesotans this year.

Kennedy’s recent comments were so controversial that they united rival autism groups, said Oana Zayic, who spoke at the conference about how autism has affected her son and husband.

Autism Speaks focuses on autism as a pathological disease, while the Autistic Self Advocacy Network focuses on practical supports for people with the disorder. Their shared statement didn’t mention Kennedy by name, but rejected the notion that autism is “preventable,” which is something the HHS secretary claimed.

Zayic said she didn’t like Kennedy’s comments because they presented an “either/or” framework to autism and what people with the disorder can do with their lives. Her son probably couldn’t bowl, do scuba diving or climb rocks on his own, but he has done all of those things with supportive services from the Courage Kenny Rehabilitation Institute.

“Anything can be done with the right supports,” she said.