It’s clear that President Donald Trump is interested in the subject of autism spectrum disorder, repeatedly expressing an interest in doing “something” about the condition. To autism advocates, his enthusiasm is exciting; the issue could always use more funding for research and services to improve quality of life and social integration.
Unfortunately, anti-vaccine activists like Robert F. Kennedy Jr. have seized upon this interest as an opportunity to insert themselves into a conversation about vaccine safety at the highest policy levels. Last month, Kennedy claimed Trump had selected him to lead a panel on “vaccine safety” (the administration later denied this and said they were in fact exploring a commission on autism).
And on Wednesday, Kennedy and actor Robert De Niro, who has his own history of vaccine skepticism, appeared at a press conference in Washington, D.C., to again push the notion that a panel on vaccine safety would eventually move forward under Trump’s administration. (The nation already has an independent, expert advisory panel on vaccines whose meetings are open to the public and viewable online.)
And though most Americans agree that vaccinations should be mandatory if a child wants to attend school, public health experts are bracing themselves for a resurgence of preventable childhood diseases if an anti-vaccine base sways Trump’s policy decisions.
Trump has expressed skepticism about vaccinations in the past, despite large-scale studies that demonstrate their safety, although in his most recent remarks he’s discussed only autism. If the president really is interested in advancing autism research and care for the autism community, there are real, concrete things he could be doing instead of legitimizing dangerous anti-vaccine voices. We asked three autism research experts to weigh in on the most pressing needs in the autism community in the U.S.
1. Focus on services for adults with autism
Thanks to the advocacy and activism of parents, children who have autism are entitled to a free public education, early intervention services and special education services. But when these children become adults, these services and programs dry up, leaving many of them adrift and their aging parents scared about what will happen to their grown children when they die.
“The most important areas of service needs are for the adult community,” said Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University. “We need to expand access to employment, housing, support services and vocational training.”
So far, employment training programs for adults with autism are scarce, as are housing options for people who may want to live and work independently but still need some support with everyday living. Even research on services for adults with autism is “underdeveloped” and “unformed,” according to a 2012 study published in the Canadian Journal of Psychiatry.
A 2011 report on the state of services for adults with autism, published by the parent-led Organization for Autism Research, found that most adults with autism are either unemployed or underemployed, and live with their parents or other relatives, and their access to residential and employment programs is severely restricted due to a lack of funding for these services.
In addition, this report notes, the public perception that adults with autism are unemployable is a major impediment to their full integration into society. Another 2011 analysis of young adults with autism found that those without an intellectual disability were three times more likely to have no daytime activities, compared with those who did have an intellectual disability. This suggests that a lack of services, not a lack of abilities, keeps adults with autism out of the workforce and segregated from society.
Lynn Koegel, clinical director of the Koegel Autism Center at the University of California, Santa Barbara, also put adult services and adult integration at the forefront of the community’s concerns.
“Individuals with autism and their families face daily challenges ranging from difficulties including their children in mainstream settings to gaining meaningful employment,” Koegel said. “Research focused on training professionals and improving community support so that parents and individuals with autism don’t experience significant stress and anxiety on a daily basis is critical.”
2. Make access to education and autism services more equal
By law, all children with autism in the U.S. are entitled to a free and appropriate education and special services such as speech and language instruction, occupational therapy, physical therapy and psychological evaluation. But in practice, children are more likely to gain access to these services if they are white and wealthy.
“Services are not equally provided to all children, with Hispanic and African-American children getting the short end of the deal,” Koegel explained. “This hurts everyone in the long run and needs to be corrected.”
While autism affects all racial, ethnic and economic groups, black and Latino children are more likely to be diagnosed with autism later than their white peers, which means they get treatment and therapy services later, too. There are also cultural barriers that could explain why minority children receive fewer speciality services. A 2014 series of focus groups and qualitative interviews conducted at Oregon Health and Science University in Portland found that Latino parents whose children were eventually diagnosed with autism couldn’t communicate well with their doctor because of language barriers, while some health care providers dismissed their concerns about their children’s early behavior.
In addition to services, black families affected by autism are also underrepresented in genetic and biomedical research on autism, despite their willingness to be a part of these studies. This research disparity can translate into major knowledge gaps in untangling the many causes of autism and other genetic disorders, especially for certain racial and ethnic groups.
3. Support research projects that are already in place
Currently, the U.S. has an autism research agenda, agreed upon by a federal advisory committee at the U.S. Department of Health and Human Services. The Interagency Autism Coordinating Committee, or IACC, brought together scientists, families and people with autism to come up with a set of priorities for autism research. Federal funding for the plan was signed into law in 2006 under President George W. Bush and renewed in 2011 and 2014 under President Barack Obama. This funding for autism research also includes money for services, training and monitoring, and it is expected to exceed $3 billion by 2019, according to Autism Speaks.
Tager-Flusberg hopes that the Trump administration will continue to support this federal funding for autism research and services, and perhaps even accelerate its reach.
“There is an urgent need to address a wide range of questions, from underlying risk factors and causes to the development of novel interventions and treatments capitalizing on many recent scientific and technological advances,” said Tager-Flusberg. “We have seen how the past two decades of accelerated research funding has led to significant advance already. Now it the time to continue the momentum of progress.”
Robert Koegel, director of the Koegel Autism Center, also emphasized a dire need for the kind of research that will help people with autism immediately.
“There needs to be more applied research that will result in improvements in the condition of autism and in reductions in stress for the families,” he said. “The emphasis here is on two words: ‘applied,’ meaning that the research needs to have direct, immediately available benefit for the children and their families; and ‘research,’ meaning that new advances need to be made and not just rely on the status quo.”
It’s clear that Trump is troubled by what he perceives to be a rise in autism (that point is debatable, as experts agree the rise in diagnoses is largely due to an expanded definition of the disorder), but hopefully he’ll engage autism researchers and the autism community about their greatest needs instead of entertaining the ideas of vaccination skeptics and encouraging parents to be wary of the evidence-based childhood vaccination schedule.