News The latest developments in autism research.
News

New administration stirs angst, activism among autism scientists

by  /  1 February 2017
Scientists speak: Researchers are wary of the Trump administration’s 'anti-science’ positions.

Robinson Meyer / The Atlantic

Four months ago, if you had asked Jonathan Sebat about his political stance, he would have described it as “passive.” Sebat, who directs the Beyster Institute for Psychiatric Genomics at the University of California, San Diego, saw himself as much less politically engaged than many of his colleagues. He briefly digested the news before heading to work, where his primary focus is to understand the molecular basis of autism.

But since November, Sebat has found politics inescapable, and news reports pepper his waking hours. “I receive alerts throughout the day of major political upheaval,” he says. “I find myself dedicating hours a day trying to figure out what’s going on and corresponding with other scientists.”

U.S. President Donald Trump has made remarks that defy established science, including linking autism to vaccines. His ban on travel from seven Muslim nations, put in place by an executive order signed 27 January, may stem the flow of scientific talent into the United States.

These actions have caused many scientists to dub the new administration as ‘anti-science.’

Sebat says he fears that the administration’s hostility toward facts in autism, climate change and other fields will hinder research. “Politics seems to be eclipsing science,” he says.

Sebat is not alone. More than 800,000 people have reportedly joined a private Facebook group planning a March for Science in Washington, D.C. As momentum grows on social media, the organizers are helping volunteers set up multiple satellite marches across the country. The date is undecided. “A well-organized, peaceful protest is an excellent way to send a clear message,” says Sebat, who hopes to attend a satellite march in San Diego.

It would be the second march this year for Chris Gunter, director of communication operations at the Marcus Autism Center in Atlanta, Georgia. Gunter participated in the Atlanta March for Social Justice and Women on 21 January, the day after Trump’s inauguration. On inauguration day, she took to Twitter to spread facts about autism and genetics using the hashtag #USofScience.

“Scientists have a responsibility to defend facts, and not let ‘alternative facts’ stand,” she says.

Foggy future:

Predicting what the next four years under Trump will bring is challenging, in no small part because of the president’s distaste for traditional, or ‘establishment,’ politics.

Amid the uncertainty, there is one sign of stability. Francis Collins, who has been director of the National Institutes of Health (NIH) since 2009, will remain in his position for now. But Trump has augured change with some of his picks to lead other healthcare agencies.

His nominee for secretary of the Department of Health and Human Services, Tom Price, has proposed his own alternative to the Affordable Care Act and supports major changes to Medicaid and Medicare. Several of Trump’s purported candidates to head the Food and Drug Administration (FDA) are vocal critics of the agency. They include investor Jim O’Neill and biotech executives Joseph Gulfo and Balaji Srinivasan.

Members of Trump’s transition team have also reported that he is considering forming a commission on autism research. But such a commission already exists. The Interagency Autism Coordinating Committee (IACC) advises the Department of Health and Human Services — which oversees the FDA, the NIH and the Centers for Disease Control and Prevention — and coordinates autism research and services across these agencies. So it is unclear what a new commission would accomplish.

“That worried me in that, like so many other things, this administration hadn’t done its homework,” says David Amaral, who directs research at the University of California, Davis MIND Institute and serves on the IACC.

The president has also disturbed many public health experts by endorsing the myth that vaccines can cause autism. Supporting this falsehood may increase the number of unvaccinated children, rendering them vulnerable to serious illnesses such as measles and whooping cough. Just 10 days before the inauguration, outspoken ‘anti-vaxxer’ Robert F. Kennedy, Jr. claimed that Trump had asked him to chair a vaccine safety committee. And Andrew Wakefield, the disgraced scientist who helped start the anti-vaccine movement with his fraudulent research, attended one of the president’s inaugural balls.

Poor protection:

Services for children with autism could be in danger under the Trump administration as well. Trump’s pick for Secretary of Education, Betsy DeVos, wants to shift power toward states and away from federal oversight. The move concerns many people in the special education community. For one, it could weaken the federal protections for children with disabilities granted by the Individuals with Disabilities Education Act.

At times, observers have questioned the president’s treatment of people with disabilities. While campaigning in November 2015, Trump appeared to mock reporter Serge Kovaleski, flapping his hands as though imitating the effects of Kovaleski’s joint condition, arthrogryposis. Trump later said his actions were misconstrued.

“It doesn’t sound like the administration is very supportive of people with disabilities, or people with autism, more specifically,” says Connie Kasari, professor of psychological studies at the University of California, Los Angeles.

Yet another worry comes from changes to the Affordable Care Act, which Trump has vowed to demolish. Without a suitable replacement, 18 million people could lose insurance, according to the Congressional Budget Office.

“There doesn’t seem to be much will to protect public health,” says Lisa Croen, director of the Autism Research Program at Kaiser Permanente. “There are so many families with members with autism who rely on some public funding.”

The president’s crackdown on immigration may signal a stormy climate for international collaborations, such as one in which researchers are tracking the development of infants who have an older brother or sister with autism. This so-called ‘baby sibs’ study involves researchers in the U.S., United Kingdom and Canada.

Kasari, who is not a part of this study, is concerned about the impact of new immigration policies on her colleagues and collaborators. “I have Muslim graduate students who are very concerned,” she says. The New York Times has reported that 17,000 students from the seven banned countries are enrolled in U.S. universities.

Bipartisan issue:

Some researchers see at least one silver lining: the possibility of a budget boost. The past four years have seen increasingly tight budgets. In 2010, public and private spending for autism research exceeded $400 million; as of 2015, it had dropped to about $315 million.

But the coffers may open under the new administration. Kevin Pelphrey, who directs the Autism and Neurodevelopmental Disorders Institute at George Washington University in Washington, D.C., is a member of the IACC and has reviewed government support for autism research. “I look at the funding trends and, if anything, it looks a little better with a Republican administration,” he says. Indeed, a 2015 political science review suggested the government tends to spend more on research when a Republican is in the White House.

Still, other scientists say it’s hard to predict how federal dollars will be spent. Although President Trump has emphasized his desire to secure borders, he has yet to identify a central scientific or public health goal akin to the Obama administration’s National Alzheimer’s Project Act.

Regardless of the outcomes, one thing is certain: Scientists want to have a say.

Some researchers are going so far as to run for office. Michael Eisen, an evolutionary biologist at the University of California, Berkeley, has announced his bid for the U.S. Senate. A new political action committee, 314 Action, is working to help experts in science, technology, engineering and mathematics get elected to office.

“We’re going to have to be more active,” Kasari says. “At the most minimal level, that means working within our state to work with senators and representatives to keep a strong voice.”

Autism researchers in particular should find ways to work with the new administration rather than against it, says Pelphrey, who has a daughter with autism. If Trump creates a new commission on autism, “we as scientists and parents should ask to be on it,” says Pelphrey. “If we just boycott it instead, we are saying our voice doesn’t matter.”

Pelphrey and other members of the IACC hope the government will call on them for a thorough analysis of autism’s toll on society and the money required to make a significant impact on research. “This is an incredibly bipartisan issue,” Pelphrey says. “If we jump in there, we could get [a] moonshot at autism.”


close

Log in to your Spectrum Wiki account

Email Address:

Password:


close

Request your Spectrum Wiki account

Spectrum Wiki is a community of researchers affiliated with an academic or research institutions. To be considered for participation, please fill out this form and a member of our team will respond to your request.

Name:

Email Address:

Title and Lab:

Area of Expertise:

Comments: