Date Published: August 11, 2021
Adults on the spectrum live in a world that knows very little about them. Researchers have spent decades focused mostly on children and teenagers who have autism. But they do not know a lot about how autism affects people when they are 25, or 50, or 85.
“There is so much we don’t know about autism in adulthood,” says Christina Nicolaidis, M.D., M.P.H. Nicolaidis, an autism researcher, is co-founder of the Academic Autism Spectrum Partnership in Research and Education, and editor-in-chief of the research journal, Autism in Adulthood.
Only 3 percent of U.S. autism research funds in 2018 went to study people “as they progress into and through adulthood,” according to a federal report.1 By contrast, about 25 percent of autism funding went to study early intervention, treatments, and education for children. Most funds went to study the biology and causes of autism.
Research on adults has grown in recent years, but Nicolaidis says, “we have barely scratched the surface.”
16,000 Adults and Counting
Researchers at SPARK, the largest study of autism, hope to expand what we know about autism in adulthood. SPARK has enrolled more than 16,000 autistic adults in the study. SPARK also hopes to continue learning from many of the adults who joined SPARK as children.
More than 77,000 children with autism have been enrolled in SPARK by their parents. After they turn 18, they can take control of their SPARK accounts and begin providing new information about themselves to the study. See more on that below.
By participating in research, autistic adults may be able to help answer questions such as: How does autism affect people as they get older? What services help the most? How do people find careers? Do they develop health conditions as they age? Do medical problems they faced as children, such as poor sleep or gastrointestinal issues, get better in adulthood?
“These and other questions can only be answered when people participate in research from childhood through adulthood,” says Kiely Law, M.D., M.P.H., SPARK’s director of research operations. “This is where SPARK comes in. SPARK collects medical, genetic, and behavioral information about children, teens, and adults with autism and their family members. And because SPARK will continue its research into the future, scientists will continue to learn from SPARK participants throughout their lives and answer questions that can only be answered through long-term research.”
Kathy Wilcox, a member of the SPARK Community Advisory Council, participates in research as both an autistic adult and as the parent of a child on the spectrum. She hopes researchers and autism service providers will focus more on autism in adulthood.
“Our children are children for a very short time, and then they have a very long adulthood ahead of them,” Wilcox says. “It’s like there’s a drop off of all the supports once they leave high school.”
Agencies often focus on job training, but autistic adults may need help in other areas, such as parenting, relationships, social situations, and life skills, she says. “There isn’t a lot of help available for navigating life, unless you have care coordination through the developmental disability [agency], and a lot of people don’t qualify for that. Even though they don’t qualify, they could still use it. And a lot of us who were diagnosed as adults can’t get those services,” Wilcox says.
Why is There Less Focus on Adult Autism?
Nicolaidis, a doctor who specializes in adult internal medicine, began researching autistic adults 15 years ago. At first, she says, some people were surprised by her interest in autism because she is not a pediatrician.
Many autism researchers are psychologists and doctors who specialize in children. Autism is usually diagnosed in childhood, when it can lead to early intervention and special education services at school.
But why do people associate autism only with childhood? “It’s not like autistic people disappear at age 18 or 21,” she says.
Growth in Autism Research
Nicolaidis says much of the autism research agenda reflects the priorities of parents. Autism diagnoses began increasing dramatically in the 1990s, and the families of those newly-diagnosed children lobbied successfully for research funds. They also raised research money themselves.
As other researchers wrote in 2009, “During the last two decades autism has moved from relative obscurity to the center of media attention and public awareness. No other child psychiatric disorder has seen such an increase in fund raising activities and lobbying for federal dollars.”2
Researchers responded by investigating some of those parents’ priorities, such as finding the causes of autism, therapies, and interventions, Nicolaidis says. “It was very hard for those parents to think beyond the childhood years.”
As that group of children enters adulthood, research seems to have followed them. “We’re seeing a big rise on research in adults in recent years. But it’s still a drop in the bucket compared to what’s going on with children,” Nicolaidis says.
It is important to study adults of all ages for the same reasons that we study children, she says. “Researchers hope that our work will help people lead better, happier, more fulfilling lives, and lives don’t end with the transition to adulthood,” she says.
Adults as Participants and Partners
Autistic adults can help by joining research studies, she says, and researchers can view adults as partners who help shape research. “It’s a two-way street. It means autistic adults participate in research as participants, participate as research partners, and ultimately participate by becoming researchers themselves,” Nicolaidis says. The Academic Autism Spectrum Partnership in Research and Education, for example, includes autistic adults in all parts of the research process.
Researchers can make it easier for adults to participate in studies, Nicolaidis says. They could work with adults to develop research surveys that are easier for people who have autism or intellectual disability to answer, according to an article in Autism in Adulthood. Some surveys, for example, use figures of speech, complex words, incomplete phrases, and language that can be confusing for some autistic people, according to that article.3
SPARK Research on Adults
Autistic adults at SPARK have answered the call to participate in research, and to serve on SPARK’s Community Advisory Council, Scientific Advisory Board, and Participant Access Committee.
As participants, they have contributed to studies about their experiences during the COVID-19 pandemic, sensory sensitivities, psychiatric conditions, health conditions in older adults, language, and pronoun comprehension. Those studies were done through SPARK Research Match, a free service that connects interested adults with autism researchers outside of SPARK.
Ultimately, information from autism research may lead to changes in public policy, health care, and services for autistic adults. “That’s why it’s so important for adults to join SPARK and for teens to continue their participation when they turn 18,” Law says.
How Can Someone Stay in SPARK After Turning 18?
First, SPARK parents will be asked if their 18-year-olds with autism have a legal guardian. If they do, then the guardians can continue participating on the teens’ behalf.
If the teens do not have a guardian, SPARK will ask the parents for the teens’ email address.
SPARK will then contact the teens and ask if they want to keep participating in the study and providing information about themselves. If they agree, they will be able to receive study results, take surveys, learn about research, and get gift card codes for participating.
- See a list of SPARK’s research publications
- Read reports about SPARK studies of adults from Research Match