In the last decade or so, you’ve likely heard more and more about autism. That’s in part because autism is diagnosed more often than it once was (though it doesn’t appear that autism itself has become more common). Read on to learn more about autism, the language we use to talk about it, and where our research dollars should be going if we want to understand the condition.
What is autism?
Autism is a lifelong disability that, for some autistic people, can come with intellectual, language, or other impairments that mean they need substantial support on a daily basis. The American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) outlines criteria to help diagnose autism, including “persistent deficits in… social communication and interaction” and patterns of behavior like “restricted, fixated interests that are abnormal in intensity or focus.” The DSM recognizes that there is substantial variation (a “spectrum”) in the kind of symptoms autistic people might have, as well as the degree to which those symptoms shape their daily experiences. Some autistic people have difficulty living independently.
Christina Nicolaidis, a doctor who is also a professor in the school of social work at Portland State University and co-founder and co-director of the Academic Autism Spectrum Partnership in Research and Education, says the DSM criteria are important for diagnosing autism, but that they don’t give the full picture of what many autistic people experience. When it comes to research and designing programs that benefit autistic people, “we can and should also focus on what a person can do, even if there are many challenges,” says Nicolaidis.
Nicolaidis, who has worked with autistic people for decades, points out that many have skills and experiences that are often ignored in conversations about autism. “For example, I have autistic community partners who are non-speaking but can do far more calculus than I will ever be able to do.”
Research should support autistic people
When the CDC updated its website recently to suggest that vaccines might cause autism, the page also claimed that the Department of Health and Human Services (HHS) “has launched a comprehensive assessment of the causes of autism.”
Experts on vaccines and autism are worried that this assessment is likely to focus on vaccines because HHS Secretary Robert F. Kennedy, Jr., has a history of saying that vaccines cause autism. He even founded an organization called Children’s Health Defense, which has filed both state and federal lawsuits to repeatedly challenge vaccine mandates.
On top of that, RFK, Jr. recently added 21 new members to the Interagency Autism Coordinating Committee, a group that helps coordinate work related to autism in HHS. Some of those new members have a history of claiming that vaccines cause autism. Since the committee will advise HHS on how to spend the $2 billion Congress has allocated to autism research for the next five years, there’s good reason to be concerned that a lot of money is about to be wasted.
“Nowadays, there’s a lot of information about the causes of autism,” says Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia. “It clearly has a genetic component. And there are a lot of other interesting leads like environmental exposures that have nothing to do with vaccines or vaccine components.” We should be following those leads instead of prioritizing valuable resources looking into the debunked link between vaccines and autism.
What’s more, some autism researchers are concerned that further research into the causes of autism, especially if it’s focused on vaccines, will leave the needs of autistic people unaddressed. We need to strike a healthy balance between understanding the causes of autism and research that could directly help autistic people live well. We won’t get there if we keep investing money and time in investigating vaccines alone.
Nicolaidis explains that autistic people are particularly interested in seeing more research in the areas of mental health, employment, community participation, independence, and quality of life. “Research can help inform what we might be able to do to make employment settings, healthcare, playgrounds, and other spaces more accessible to autistic people,” Nicolaidis says.
A note about preferred language
Unsure whether to say “person with autism” or “autistic person”? You’re not alone. The autistic community is currently debating what language is most appropriate. Nicolaidis, who teaches doctors and other healthcare workers, says that she teaches her students that when they’re working with an autistic person, they should use what’s called patient-centered language, “which basically means whatever the person wants.”
In this article, we used what’s called identity-first language by using the phrase autistic people, as opposed to person-first language like people with autism. In analogous situations, we use phrases like person with diabetes to recognize their humanity before their condition. “Many of us use identity-first language when talking about autism because we don’t want to imply that autism is an issue that we’re trying to distance the person from,” Nicolaidis points out. “We recognize that it’s part of who somebody is.”
Bottom line
Vaccines don’t cause autism, but more research is needed to answer outstanding questions—like autism’s causes and how best to support autistic people.
