With evidence, scientists cut through misconceptions about autism

By Kate Morrissey

As political debates skew information about autism, several researchers and medical doctors gathered at the Society for Neuroscience conference in San Diego for a panel co-hosted by SciLine to help journalists gain more insight on how to cover the topic and avoid misinformation.

Jed Elison, a professor at the Institute of Child Development at the University of Minnesota, emphasized that what autism looks like can vary greatly from person to person, and the causes can vary as well. He encouraged journalists to question people who say that there’s one specific cause or set of symptoms.

“It’s hard to message about variability, but I think we have to,” Elison said.

Holden Thorp, editor in chief of the Science family of journals and moderator of the panel, said that his own diagnosis at age 53 helped explain a lot of what had happened in his life. He said he comes across college students in his work who have not yet been diagnosed and who need help.

To convey accurate information about autism, journalists can benefit from including both scientific research and the perspectives and stories of autistic people in their coverage.

“The autism community is such a powerful and often left out group of people in these stories,” said Laura Sanders, a journalist at Science News who attended the conference.

Misconceptions: vaccines, Tylenol, and leucovorin

Many public figures, including top officials in the Trump administration, are spreading misconceptions and false claims about autism. On Wednesday, the Centers for Disease Control and Prevention updated their website to falsely state that studies haven’t ruled out the possibility of vaccines causing autism.

“Let me first say very clearly that vaccines do not cause autism,” Elison said during the conference panel.

Vaccinating children according to the proper schedule helps their immune systems protect them from diseases.

The best available research indicates that Tylenol (also known by the generic name acetaminophen) does not cause autism.

The American College of Obstetricians and Gynecologists has said that pregnant people can take acetaminophen without worrying about causing autism in their children.

“Correlation is not causation,” said Shafali Jeste, the chair of pediatrics at University of California, Los Angeles.

Ice cream sales and shark attacks both increase during the summer, she said, but that doesn’t mean that buying ice cream makes someone more likely to be bitten by a shark. Studies that have taken genetic factors into account have found no association between acetaminophen use and autism, and reporters can pull footage or quotes from SciLine’s interview with an expert on the topic. By contrast, some studies that do not consider factors such as genetics have noted a correlation between acetaminophen use and autism—a key difference to note when evaluating claims and studies.

In contrast to vaccines and Tylenol, genetics are a significant factor in the development of autism.

Leucovorin has also been highlighted by Trump administration officials. Leucovorin, a folinic acid supplement for people who have deficiencies because of certain chemotherapy treatments or rare conditions, is not a proven treatment for autism, Jeste said. She called use of the supplement to treat autism a “gray zone.”

Though she knows of some doctors who prescribe the supplement for short periods of time in autism cases to see if there is any notable improvement in the patient, she said the type of study needed to determine whether and when leucovorin helps treat autism hasn’t happened yet. She said she does not prescribe leucovorin herself.

“Our families are very hungry for treatment. And I will say to my patients, ‘If I had a pill that I could give your child to completely reverse the course and symptoms of autism, I would be the first to be prescribing it for you.’” Jeste said.  “We don’t have one.”

What is autism?

Autism spectrum disorder is a neurodevelopmental disorder diagnosed based on behaviors that can vary a great deal in presentation, according to Jeste.

Those behaviors have two main categories: challenges in social communication skills and restricted, repetitive behaviors or interests.

Social communication challenges can include difficulty in making friendships, developing relationships, and using nonverbal communication such as eye contact or gesturing.

“That looks different at different ages and different levels of severity,” Jeste said.

Restricted behaviors or interests can include repeated movements or speech, insistence on sameness, and unusually strong interest in specific things.

Why have autism rates risen?

The prevalence of autism is increasing because of changes in how doctors diagnose the condition and increased awareness. Changes in how prevalence is measured have complicated these numbers as well.

In 2013, the Diagnostic and Statistical Manual of Mental Disorders changed the criteria for autism in ways that expanded the diagnosis. The diagnosis now includes milder variations that went undiagnosed—and often unsupported—before then, according to Suma Jacob, director of the Division of Child and Adolescent Psychiatry at the University of California, Los Angeles.

Awareness about autism and destigmatization of the condition have also led more adults to seek testing. It’s important for autistic people to get diagnosed, Jeste said, so that they can receive the support services that they need.

“Having that diagnosis helps you identify what some of your challenges are and then learn about strategies and options out there, but also learn that you’re not alone, that there are other people who have these challenges,” Jacob said. “You are part of a larger community.”

The CDC set up a monitoring network in 2000 to better track autism prevalence. Now scientists look at the number of documented cases in the country, which better accounts for variability by region, Jacob said. The Transmitter’s map of autism prevalence studies points to research in many U.S. locations.

Regions that have made more effort to screen and diagnose children have higher prevalence rates because they are doing more to detect autism. San Diego County, as an example, started a screening program with pediatricians.

“They have some of the highest numbers because of that effort,” Jacob said.

Resources

Journalists can use the Disability Language Style Guide from the National Center on Disability and Journalism and the Media Communications Guide from Autistica to guide word choice when writing stories about autistic people.

The panelists at the Society for Neuroscience discussion also put together a toolkit to help journalists identify sources with accurate, scientific information about autism.

Kate Morrissey (she/her/hers) is an award-winning journalist with a background in data reporting who primarily covers immigration issues in the San Diego-Tijuana border region. She is a co-founder of Daylight San Diego.