RFK Jr. says autism ‘destroys’ families. Here’s what those families want you to know

WASHINGTON (AP) — Emery Eversoll and her mother shared a good laugh when Health and Human Services Secretary Robert F. Kennedy Jr. said that some autistic children will never write poems.

The 16-year-old’s bedroom is full of notebooks featuring her prose. Sometimes, she quietly recites poetry to get through an outburst of anger. Her mother began suspecting she may have autism, in part, because she had memorized every word from a favorite book by age 2.

Still, this Kansas family is optimistic about Kennedy’s plans to launch a broad-based study of what causes autism, the complex developmental disorder that impacts the brain and causes delays in language or learning, social withdrawal and an unusual need for routine. Kennedy has vowed to identify some of the causes of autism, which has been studied for decades, by September.

Kennedy has said autism ”destroys families.” He said children with autism “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.”

His comments and his plan to swiftly study its causes, have splintered a community of millions of people living with autism. For some, they were an overdue recognition of the day-to-day difficulties for families with autistic loved ones. To others, Kennedy deeply misrepresented the realities of their disability, provoking concern about his ability to handle a sweeping assessment of the disorder.

Some worry, too, that Kennedy has spent years suggesting that vaccines might cause autism, despite decades of scientific research that shows no such link.

Ohio father Scott Copeland, himself autistic and a parent to two autistic children, does not trust that Kennedy will conduct a legitimate study.

“It’d be like standing up and saying you’re going to have the cure for cancer in six months,” said Copeland, who’s 56. “Angry isn’t a sufficient word.”

Life with autism can be a daily struggle

While announcing plans to study the causes of autism, Kennedy described a grim life for those who have to cope with it.

For Kelly Van Den Berghe, Kennedy’s comments reflect a painful reality for the son she loves. The Massachusetts mom of five has an 18-year-old son, Daniel, who has profound autism.

Daniel cannot speak, although a tablet helps him communicate. He frequently punches himself so hard that he’s at risk for fracture or concussion. About a decade ago, doctors recommended he enter a full-time residential facility for his safety. It took years for his mother to agree to that, and, even now, tears well up in her eyes as she talks about that decision.

“My child, I do truly believe, that if he were able to tell us, he would not want autism because this has not affected him in a positive way,” Van Den Berghe said. “So, for me, having someone finally recognize my son and his population is amazing.”

The Eversolls viewed Kennedy’s comments that way, too. Emery Eversoll struggles with fits of anger. Loud noises can bug her. And clothes can feel weird, especially jeans or socks, which often need to be worn inside out.

“It is hard if your child has any kind of thing that they have to work through or deal with that’s extra,” said Jessica Eversoll. “Just like if your child had lost their hand, it’s still the same child, but they’re going to have struggles navigating the world around them.”

Eileen Lamb knows those struggles well. She was diagnosed with autism after she started noticing signs a decade ago that her first son, Charlie, may have autism.

Days in Austin, Texas, can be daunting with Charlie, younger brother Jude, a 9-year-old who also has autism, and a 2-year-old sister, Billie.

At 12, Charlie still requires constant supervision, especially with his habit of eating non-food items; last year he swallowed a screw. At night, she monitors Charlie with a video camera, a motion detector and a tent-like safety bed to make sure that he does not bang his head or try to eat the walls. On a blog, Eileen Lamb shares therapy tips, family wins — like taking all three kids to a little league soccer game — and mourns some of the milestones that Charlie has missed.

Lamb said it’s unlikely Charlie will ever play baseball or go on a date — as Kennedy said last month when describing autism — but she also doesn’t only view her child’s limitations.

“I see where he was going with his comments,” Lamb said. “But I also think that’s not how you measure the value of our children’s lives. The language we use matters.”

Copeland, the Ohio father, also believes his 21-year-old son fit Kennedy’s description of autism. His son is non-verbal, lives at home and requires around-the-clock care because he doesn’t sense danger.

Kennedy’s comments, however, made it clear to Copeland that he’s had little experience with the disorder.

“I don’t appreciate people presenting themselves as experts when they don’t know a damn thing about something,” he said.

The quest to determine autism’s cause has proven elusive

Kennedy has described autism as a “preventable disease.”

That’s rattled families that see a clear-cut answer for the cause of autism: genetics. Scientists, too, have concluded that genetics play a significant factor.

Ashley Seliquini, a 40-year-old mom and speech pathologist living in Greensboro, North Carolina, can clearly see the connections in her family. She and her 5-year-old daughter have both been diagnosed with the disorder. Both sometimes lose their ability to speak. Her daughter, too, gets overwhelmed by loud noises.

“You see it run in families,” Seliquini said. “Sometimes the parents are not aware that they are autistic. After their child gets diagnosed they go, ‘Oh, my goodness, I’m autistic, too.’”

Doctors and medical experts have attributed the rise in autism cases — about 1 in 31 U.S. kids are now diagnosed with it — to increased awareness, especially around milder forms of the disorder.

Kennedy has flatly rejected that explanation.

Both he and President Donald Trump have suggested that vaccines could be to blame for rising rates of autism, despite longstanding research that says otherwise. The National Institutes of Health has identified other environmental risk factors such as prenatal exposure to pesticides or air pollution, extreme prematurity or parents who conceive at an older age.

Last week, Kennedy said in an interview with CNN that the health department would start awarding grants to a team of 15 scientists who will study autism, although he has provided no details about who will lead the studies.

Eileen Lamb hopes that the studies do not look into vaccines because researchers have already firmly concluded there is no link. Instead, she’d like to see a focus on ways to support families like hers.

“It’s not just about what’s the cause but how do we help,” she said.

For Van Den Berghe, Kennedy’s study may hold answers she’s wrestled with since Daniel was diagnosed many years ago. She’s aware that research has found no link between vaccines and autism, but she’s still not convinced. Daniel’s severe reaction to the shots all those years ago is the only thing she can point to as a cause; no one else in her family has been diagnosed with autism.

“Why did this happen to him?” she said. “I’ve been searching for years and years and years.”