Owen Chabot's clocks hang on the walls of his family's home. He creates them out of construction paper, tape, glue and markers.
Owen Chabot, 8, has autism spectrum disorder.
Michelle Fortner is 53 and has autism.
Tonia Fortner and her daughter, Michelle.
Melissa Chabot, 46, and her son, 8-year-old Owen.
Julian Furman, 43, with his stepmother Mary Beth Furman and his father Steve Furman.

Melissa Chabot's 8-year-old son, Owen, is creative, has a great memory and smiles a lot. His specialty is clocks, she said. He uses construction paper, tape, glue and markers to create cuckoo clocks, mantle clocks and pendulum clocks, all with different times on display all around their house.

Chabot, who lives in Springfield, Virginia, jokes that she never knows what time it actually is.

Owen has autism spectrum disorder. "He's a kid just like everybody else," Chabot said, even though "he doesn't behave the way other kids do."

"It's not a disease," Chabot said. "It's a different way of being, and there's a huge spectrum."

During a White House event Sept. 22, President Donald Trump said pregnant women should not take Tylenol, asserting that acetaminophen, the active ingredient in Tylenol, causes autism. Trump’s assertion, a position doctors have disagreed with for years, drew immediate backlash from members of both the medical and autism advocacy communities.

Trump, amid myriad other statements, also announced his administration will make the drug leucovorin, also known as folinic acid, available to kids with autism. The drug is typically prescribed to counteract the toxic effects of chemotherapy medications such as methotrexate and to treat anemia, and its effect on autism is still being debated.

"If you've seen a kid with autism, with severe autism, it's hard to watch," Food and Drug Administration Commissioner Dr. Martin Makary said during the Sept. 22 press conference.

But some people with autism and family members of those with autism told USA TODAY that finding a cause or cure for autism is not necessarily what they're looking for − and maybe not even helpful. Parenting a child with autism has its challenges, some said, but they aren't sure there is a cure. Instead of trying to eradicate autism, they'd rather have more support in place to pursue early interventions and make life more comfortable for those with autism.

"I want to come at it with compassion," said Amber Gustafson, a mother in Iowa whose 21-year-old son has autism. "I want to have compassion for my son. I want to have compassion for friends who have kids that are at different places and have different levels of need than mine."

Katy Neas, CEO of The Arc, a national nonprofit serving people with intellectual and developmental disabilities, said there is a split among families of children with autism. Some believe that "having a child with autism is a tragedy," she said, but she feels there are many families with autistic children who "feel very, very differently."

Mothers of children with autism were at the press conference with Trump to share their stories. They expressed gratitude to Trump for working to find answers about the disorder.

Neas said she wants to reinforce with parents what is known about autism, like best practices for helping kids with autism learn and communicate, and the need for parental support and education about the disorder.

"Every conversation about people with disabilities needs to start with seeing their inherent humanity, their inherent worth and their autonomy," Gustafson said. "And making sure that people who are autistic have the ability to make decisions about and for themselves as much as possible."

'Next to nothing out there' on supporting older adults with autism

Trump's administration talks a lot about children with autism, Gustafson said. But there's less awareness or discourse about what happens when those kids grow up.

Chabot's son is in elementary school. She said she's had a hard time finding consistent speech therapy for him, but otherwise his school system has robust services for kids with autism. She's worried about what will happen as he grows up and ages out of the school system.

"As they get older, the services get fewer," Chabot said. "We should be looking at ways to promote inclusion and supporting research that actually improves the lives of autistic people that are here."

Tonia Fortner, 70, has a 53-year-old daughter with autism. Her daughter didn't walk or talk until she was 4 years old but was able to learn those skills through early interventions including occupational, speech and physical therapies, Fortner said.

Now, her daughter Michelle rotates between living with her sister, with Fortner and in a group home, "which isn't perfect by any means," Fortner said. They live in Prescott Valley, Arizona.

"But it's the best we can do," Fortner said. "Because she is very hard to take care of."

Her daughter is smart, Fortner said, but "she cannot say what she means." She uses a lot of repetitive and nonsensical statements. Fortner said her daughter's autism progressed significantly as she grew older.

"That's the hardest thing for this family now," Fortner said. "There is next to nothing out there about dealing with elderly or older adult autistic people."

Fortner hopes more treatments do become available to help younger children with autism grow up to be higher-functioning adults. But, she said, "There's certainly nothing that can help Michelle at this point."

Claimed link between Tylenol and autism 'nothing new,' advocate says

There's a broad consensus that there's no one cause of autism, Neas said. It's likely a mix of several factors, including genetics and the environment, she said. She's glad more research is being done about autism but worries that the Trump administration is revisiting "causes" she says have been scientifically disproven, such as vaccines.

When Chabot first heard about Trump's autism announcement, she said the undefined link between autism and Tylenol was "really nothing new."

"Moms have long been blamed for being the reason that their children are autistic," Chabot said.

These statements are harmful and untrue, Chabot said. Still, Gustafson said, it's easy for moms to try to take responsibility for their kids' suffering.

"The moment that your child receives any kind of diagnosis, as a parent, as a mom who carried that baby in your body for nine months, the first thing that you do is you question: Was it something I ate? Something I drank?" Gustafson, 48, said.

There's so much judgment thrown on pregnant mothers, she said. "It's so scary."

Gustafson's oldest son was diagnosed with ADHD and autism when he was in first grade, she said. He's 21 now, and lives with a couple of roommates. He works and drives.

When her son was first diagnosed, Gustafson said her doctor warned her about "grifters out there" who would try to sell her "wackadoodle" cures for her son's disorder.

"This is how Justin was made to be. And who am I to question that?" Gustafson said, referencing her Christian faith.

It's been difficult to see her son suffer, she said. He would get so frustrated as a child that he would punch himself in the face. As an adult, he struggles with insomnia. But Gustafson said there is "undue expectation put on moms that if there is something wrong with your child, you must go to the ends of the earth to fix it."

"Who am I to say that he needs to be fixed? To me, there was nothing broken about him," she said.

Man with autism says it 'can be a good thing in some ways'

Julian Furman, 43, has autism. He lives in Scottsdale, Arizona, near his parents.

He struggles to maintain long conversations and to make friends, and he's scared of cooking on the stove. But Furman likes to play bocce ball, uses Uber to go grocery shopping and can tell you the day of the week of any date.

"What day of the week is Oct. 9, 2075?" Furman's dad, Steve Furman, asked him on a three-way phone call with USA TODAY.

Furman took 10 seconds to think, and then replied: "It will be on a Wednesday." He's right.

"How did you figure that out?" his dad asked.

"It's 56 years away from 2019, and my birthday was on a Monday, and it's two days after my birthday, and 56 divided by 28 is 2, and that repeats itself every 28 years," Furman said simply.

Sometimes, Furman said, he wishes he didn't have autism "because then I wouldn't have a bunch of anxiety." But he said he thinks autism "can be a good thing in some ways." People with autism have special abilities, he said.

"They can be smart."

Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.

Reach Madeline at memitchell@usatoday.com and @maddiemitch_on X.

This article originally appeared on USA TODAY: 'It's a different way of being.' A cure for autism isn't what these families say they need

Reporting by Madeline Mitchell, USA TODAY / USA TODAY

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