The search for autism answers

Robert F. Kennedy Jr., secretary of Health and Human Services (HHS), has made autism one of his top priorities. He refers to high rates of autism as an “epidemic” and speaks with feeling about the suffering of the children and families affected. Some parents see Kennedy as the champion they’ve been waiting for. They hope his unorthodox approach can finally yield answers and treatments. But other parents fear he is doing more harm than good. Scientists also worry he’s ­misdirecting resources, which could set back autism research.

On April 16, Kennedy gave his first major press conference as HHS secretary in Washington, D.C., to announce the results of the latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey published by the Centers for Disease Control and Prevention (CDC) that day. The survey found that autism prevalence in America has risen to 1 in 31 children. For boys, that figure is much higher—1 in 20. The CDC defines autism spectrum disorder (ASD) as a developmental disability caused by differences in the brain.

The CDC has published the ADDM survey every two years since 2007. The first year, it estimated that only 1 in 150 children in America had autism. “Year by year, there is a steady, relentless increase,” Kennedy said during the press conference.

He grew emotional as he discussed children with severe cases of autism, known as profound autism. “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,” he said.

Mary Holland had hoped for this press conference for years. Holland is president of Children’s Health Defense, a nonprofit advocacy group founded by Kennedy, and the mother of an adult child with autism. After the press conference, she and other parents of autistic children got up on the stage and snapped photos. “We as a community have been completely dismissed by the CDC and the FDA and HHS for decades,” she said. To literally take center stage at HHS was “a very poignant moment.”

But not everyone is happy. Dr. Alycia Halladay is the chief science officer at the Autism Science Foundation. She said it’s important to remember that autism is a spectrum. Some individuals are severely disabled in the way Kennedy described. But for others, an autism diagnosis “means that they feel like that is their identity, that gives them special skills or gifts.” They live independently and graduate college. She said there are also many people who fall somewhere in between those extremes. She thinks Kennedy lumped everyone together as profoundly autistic. “That causes a lot of confusion,” Halladay said.

Holland said Kennedy’s focus on more severe cases of autism is appropriate, noting “at least 30% of the people who are diagnosed on the autism spectrum have severe medical co-occurring conditions, together with the behavioral symptoms of autism.”

During his press conference, Kennedy didn’t only express compassion. He vowed that health officials would study the causes of autism and provide some preliminary conclusions soon.

In September, he held a press conference with President Donald Trump at the White House to announce a change in medication advice related to autism. He told reporters the FDA was sending a letter to doctors notifying them that Tylenol use during pregnancy may be associated with a higher risk of autism for the baby. Trump repeatedly said, “Tylenol is not good.” He urged pregnant women to “tough it out” if they are in pain.

The actual letter, written by FDA Commissioner Dr. Marty Makary, was more conservative in its wording. It stressed that the science is far from settled, and Tylenol is still safer for pregnant women than other over-the-counter medicines like ibuprofen.

KENNEDY IS OFTEN LABELED an “anti-vaxxer,” and he has frequently questioned vaccine safety in the past, especially as it relates to autism. During the September press conference, Trump expressed similar concerns. He talked about a woman who used to work for him whose son has autism. She believes—and Trump agrees—it was caused by a vaccine.

In late November, the CDC updated its website with statements backing that belief. “The claim ‘vaccines do not cause autism’ is not an evidence-based claim because studies have not ruled out the possibility that infant vaccines cause autism.” The website previously said “studies have shown there is no link between receiving vaccines and developing autism spectrum disorder.”

The change attracted enormous attention and condemnation in some quarters. Dr. Jeffrey Singer, a senior fellow at the Cato Institute, calls the new language “embarrassing.” He said the science around vaccines and autism is settled. “The anti-vaccine people just cling to this when study after study fails to show a link,” he said.

Halladay is also concerned. The CDC is the largest public health organization in America, and its statements carry a lot of weight. “It can influence things like whether or not doctors recommend certain vaccines, whether insurance companies cover certain vaccines,” she said. It can also influence research-funding decisions, and Halladay particularly worries it will impact public opinion about vaccines.

The disagreement is about more than vaccines. It touches on a fundamental question about the causes of autism. Is it genetic or is it caused by external factors? In his April press conference, Kennedy did not use the word vaccine, but he blamed autism on environmental toxins. “Somebody made a profit by putting that environmental toxin into our air, our water, our medicines, our food,” he said.

Holland believes autism is a type of toxin-­induced brain injury. But she notes it is difficult to say more than that. “Unfortunately, at the moment, it’s an extremely subjective kind of behavioral diagnosis.” She said autism ought to be detected by things like blood work, scans, and functional neurological testing. “I’m very hopeful that this administration will take us there,” she added.

But Halladay said the scientific consensus is that autism is genetic. “About 20% of people with autism have a gene that causes their autism. Most other people have a combination of genetic and environmental factors.” Singer added that autism is also linked to older maternal age. “We do know that the older you are when you get pregnant, the more prone you are to have children with genetic disorders,” he said.

Kennedy disagrees. In his September press conference at the White House, he denounced scientific research that “has focused almost solely on politically safe and entirely fruitless research about the genetic drivers of autism,” he said. “That would be like studying the genetic drivers of lung cancer without looking at cigarettes.”

Under Kennedy, the National Institutes of Health (NIH) launched the Autism Data Science Initiative that devotes an additional $50 million to the cause of studying autism. Many of the research projects being funded will take three years to complete, but Kennedy has promised to give updates as soon as he has them.

Halladay has mixed feelings about the way Kennedy has put autism in the spotlight. “While we’re kind of happy to see that autism is being brought back into the national conversation, it’s not being done in an accurate way,” she said. “And so it’s actually creating more misunderstanding, more stigma, and it has pushed back some of the discussions about blaming people for autism or what causes autism by a decade.”