This isn’t the first time moms have been blamed for their kids’ autism

JJ Hanley can still remember the pediatrician’s words.

It was the early ’90s, and the mother of two in suburban Chicago had begun to worry that her toddler-age son, Tim, was showing language delays and other behaviors that didn’t align with his older brother’s development. Hanley turned to her son’s doctor, who declared: “There’s nothing wrong with him. What’s wrong with him is you.”

The pediatrician, according to Hanley, said she was overthinking her observations.

“I’ll never forget it,” Hanley said. “It was point blank, ‘You’re overbearing and neurotic.’”

Hanley later got a second opinion, which led to her son’s autism diagnosis and related care. He is now 32, lives independently and works as a roofing contractor. He is also a musician who writes, records and performs his own Americana music.

But in those early years, Hanley’s research brought her to the “refrigerator mother” theory, popularized in the 1950s and 1960s, that posited parental coldness — particularly a lack of emotional warmth from a child’s mother — causes autism. It was eventually discredited as more evidence-based research became available, but Hanley saw parallels to the self-doubt she felt at times as a young mother.

“I questioned it. Was it the one glass of wine that I had when I didn’t know I was pregnant? Is that what caused it? Was I in labor with him for too long?” she said. “You feel enough guilt naturally about your children no matter what, and then you have a child whose behaviors you can’t explain.

”For some mothers of autistic children, including those who are now adults, there are echoes of mother-blaming in how President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr. are talking about autism, pregnancy and vaccines. Neither official has a medical or science background, but they’ve increasingly used their bully pulpits to target messaging to the parent most often in charge of their children’s health: mothers.

During a September 22 news conference, the president told pregnant mothers to “tough it out” and avoid using acetaminophen, the pain-relief drug sold under the brand name Tylenol, which the administration is trying to link to autism despite research showing no clear causal relationship. Trump also claimed inaccurately that vaccines cause autism, and advocated for changing the childhood vaccine schedule.

Kennedy, an anti-vaccine activist, says he wants to “Make America Healthy Again,” a catch-all phrase focused in part on childhood chronic illness. He has made public commitments to finding the causes of autism, though he has also eliminated efforts within his department to investigate the issue and cut some funding for ongoing autism research. His department has simultaneously announced an initiative to fund new autism research.

While some parents of autistic children support Kennedy’s moves to investigate the condition, the administration’s rhetoric — in April, Kennedy said autism “destroys families” — has added a layer of shame and confusion for other families. Tiffany Hammond, who is autistic and has sons with autism, expressed frustration that federal officials are pointing to acetaminophen instead of finding more ways to support autistic people here and now. Hammond’s older son, in particular, is non-speaking and requires significant support.

“You’re going to have so many parents, moms in particular, thinking, ‘Oh my God, I did this to my kids,’” she said. “How does that help them?”

There is no single cause of autism, a neurodevelopmental condition that can affect how a person communicates and interacts with others. Data from a 2022 study among children shows the prevalence of autism has risen, with 1 in 31 American children who were 8 years old at the time identified as having autism. This is partially due to the diagnostic criteria for autism expanding in recent years, more childhood screening and more awareness of potential symptoms.

But the search to better understand autism has also led to generations of mothers experiencing stigma about their parental choices.

In his landmark 1943 paper first identifying autism as a condition, psychiatrist Leo Kanner observed a “coldness” in parents of autistic children. He later attributed autism to a “maternal lack of genuine warmth,” saying that autistic children “were left neatly in refrigerators which did not defrost.” The theory later appeared in a 1948 Time Magazine article about Kanner and autism.

“All but five of the mothers had gone to college; all but one had been active, before or after marriage, as scientists, laboratory technicians, physicians, nurses, librarians, artists. Cold Perfectionists. But there was something wrong with all of them,” the article noted — nodding to mothers who chose to work instead of caring full time for their children.

Today, there is more research into the causes of autism, which have been linked to a number of genetic and environmental factors.

“We know that autism is strongly genetic,” said Alison Singer, president and cofounder of the Autism Science Foundation, which supports funding research into the causes of autism. “We know that autism begins during the prenatal period, and that certain genes may be affected by the prenatal environment.”

Singer has an adult daughter with autism, Jodie, who speaks in short phrases and requires full time care. Singer also has an older brother who was diagnosed with autism in the 1960s. Their mother was called a refrigerator mother.

“She was told that the reason my brother retreated into autism was because she was too cold to properly bond with him,” she said.

Singer’s brother was eventually institutionalized, in part because federal legal protections did not exist at the time to ensure his right to an education. Unable to watch their brother and son grow up, the experience altered the dynamics of Singer’s family. Today he lives in a group home.

“I think when RFK talks about how he’s never seen a person with profound autism in their 60s or 70s, it’s because they didn’t live at home,” she said. “We didn’t bring them into the community. They weren’t in school, they were locked away in institutions. But they absolutely exist.”

In the 1960s, Bruno Bettelheim, a psychologist at the University of Chicago, further popularized the idea that autism was caused by bad parenting. He was “the first celebrity ‘shrink’ in America — the psychoanalytic equivalent of Dr. Oz,” wrote the late writer Steve Silberman in his seminal history of autism and neurodiversity, “NeuroTribes.” The book was published in 2015, before Oz’s foray into politics. Unlike Oz, Bettelheim’s title had nothing to do with medicine — he had no formal medical or psychological training.

Bettelheim, who had a regular column in Ladies’ Home Journal and published articles in popular magazines throughout the 1960s, compared autistic children to concentration camp victims. The cure for autism was a “parent-ectomy” — placement at a residential school he operated.

Hanley read Bettelheim’s book “The Empty Fortress” during the early years of her son’s diagnosis, in part because there were few books about autism at her local library. The concentration camp comparison — which implied that parents are like Nazi camp guards — shocked her. The more she learned about refrigerator mothers, the more she felt compelled to find them

.In the late ‘90s, Hanley did a nationwide callout and worked with Chicago documentary film company Kartemquin Films to produce the 2002 documentary “Refrigerator Mothers” that featured several mothers and their autistic children. The stories centered on how the moms had maneuvered years of blame and guilt as they advocated for their children’s care. She’s working with Kartemquin to rerelease the film to mark its 25th anniversary, given how timely it feels right now.

“Their stories were beautiful and profound and poignant,” Hanley said. “Their voices are unforgettable to me and their messages are as powerful today as ever.”

Bettelheim’s theories on autism are now wholly discredited, but mother-blaming lives on in various alternative treatments, diets and other solutions. In the late 1990s, mothers like Hanley were bombarded with claims that vaccines cause autism, launching a new era of mom blaming. While this theory has since been widely debunked and disproven, rumors have persisted online.

Shannon Rosa’s son, Leo, was born in 2000 and received a formal autism diagnosis three years later. At the time, it was difficult for parents to find information about autism. She remembers relating to actor and anti-vaccine activist Jenny McCarthy, who debated pediatricians on “Larry King Live” about the causes of her son’s autism.

“Most pediatricians are not trained to handhold or help parents of newly diagnosed autistic kids,” Rosa said. She felt like mainstream medicine had betrayed her, and the only people offering something she could do to help her son, right then, were parent groups talking about ways to cure autism.

Rosa added: “Like most people who are not already in the disability community, my perception of disability was negative.”

In retrospect, Rosa is embarrassed by the way she responded, but continues to share her story. She now operates a website called Thinking Person’s Guide to Autism, which is dedicated to sharing evidence-based and neurodiversity-related news, research and advice.

While Rosa isn’t old enough to have been labeled a refrigerator mother, she felt echoes of that blame in the cure-oriented parenting communities she joined. The anti-vaccine and alternative medicine movements exonerated mothers for causing their children’s autism psychologically, but the focus was still on mothers’ behavior — the decision to vaccinate, the decision to take or give certain medications, the decision to eat or feed their children certain foods. Rosa felt like if she didn’t do something, she was failing her son.

“I am the one who had vaccinated him, right? So I caused [his autism] and if I didn’t do everything within my power and spend thousands of dollars on supplements and medications and injections and all these bogus things to cure him, then I’m not good enough. I’m not being a good mom and I’m failing my child,” she said. “All of these books about [autism and vaccination, autism and special diets etc.] mentioned the refrigerator moms theory under the guise of rejecting it as empowerment. Like, ‘OK, you didn’t do anything wrong, but there is something you can do, right? You can take action,’” Rosa said.

The conversation around Tylenol, to Rosa, is much the same.

Today, Leo is a happy, healthy 24-year-old. He speaks a few words and needs full-time support, but he also loves hiking, swimming and adaptive surfing. Rosa, her husband or an aide help him do what he enjoys and live a joyful life.

“I am so furious about how badly supported I had been and how that shaped the first years of my son’s life,” Rosa said, reflecting that she wishes she’d focused on support instead of trying to cure him. She now incorporates those resources into Thinking Person’s Guide to Autism to help other parents.

The genetic component of autism brings up complex feelings for Hammond, who wrote the bestselling children’s book “A Day With No Words” about her family’s experiences with autism. She has felt guilty, but not because of what a doctor or anyone else explicitly said to her.

“You never want your kids to struggle in the way that you do … I feel a lot of emotion and a lot of guilt for the struggles I know my kids will have, and have had. I feel like I haven’t done enough to prepare them for those struggles, but also that they live in this world that doesn’t make it easy for them,” she said.

Hammond sees the focus on Tylenol and vaccines not only as a way to blame moms, but as a way to distract from Trump’s cuts to the services and supports families like hers need.

“Look at what this administration is doing or not doing in support of disabled people. [Other moms] tell me, ‘Oh, nobody’s talking about high-support-needs autism. You know, the ones who are banging their heads. They appreciate RFK. But at the same time, [the Trump administration] keeps cutting the services that those families need. They keep cutting special education, they keep gutting Medicaid and they keep taking things away. They’re not offering any solutions on how to support these families. They’re just saying, ‘Here it’s Tylenol,’ and then there’s nothing else,” Hammond said.

Singer said there was “a lot of enthusiasm” that when Trump and RFK Jr. came into office, their focus on autism would be “gold standard science.” But that’s not what she heard during that last news conference.

“What we heard was what the president thinks and feels, and that is not science,” she said.

Hanley is concerned that the Trump administration is “selling and offering snake oil to families” at a time of rampant misinformation. She worries mothers are on the receiving end.

“In the end, it comes back to the mother,” she said. “Whether you tell her now, don’t take Tylenol … it comes back to putting such an enormous burden on the mother.”

This isn’t the first time moms have been blamed for their kids’ autism was first published on The 19th and republished with permission.

Sara Luterman is he 19th's disability and aging reporter.

Barbara Rodriguez is The 19th's interim health and caregiving reporter.