New study helps understand changes in autism as individuals age
By Charlene N. Rivera-Bonet | Waisman Science Writer
Autistic adults may face changes in their autism symptoms, behavioral functioning, and health as they age, with some improving and some worsening, a new study shows. This insight may help autistic individuals and their families prepare and plan for the future.
Autism is heterogeneous across the autistic population, but it is also not static across the lifespan of a single person, the Waisman Center study published in the Journal of Neurodevelopmental Disorders shows.
Adulthood is the longest stage in the life course, but until recently, the bulk of autism research was focused on early childhood, and research has not kept up with the changing needs of autistic individuals as they age.
The study, from the Lifespan Family Research Lab at the Waisman Center, aimed to identify points during the life course of autistic individuals when vulnerabilities may be increasing, or decreasing, in order to better understand how to best meet the needs of this increasingly large population.
The researchers measured age-related changes in autism symptoms, behavioral functioning, and health prospectively 12 over 22 years, extending from adolescence through midlife and into the early years of old age. The data comes from an ongoing longitudinal study of families of autistic adolescents and adults that began in 1998 and includes
406 autistic individuals who ranged in age from 10 to 52 at the start of the study.
Specifically, they looked into what improved and what worsened, and whether the change was linear or not. They also evaluated whether these changes differed between those who have intellectual disability (ID) and those who do not. “[The results] show yet again the heterogeneity of autism,” says Leann DaWalt, PhD, director of the University Center for Excellence in Developmental Disabilities (UCEDD) and co-principal investigator of the Lifespan Family Research Lab.
They first compared individuals with autism with ID to those with autism but no ID. “One of the things we have done was look at possible different paths between those who had intellectual disability and those who don’t,” says Jinkuk Hong, PhD, research scientist in the lab and first author of the study.
Results showed that for autistic adults with an ID, overall there was greater impairments in the ability to engage in social interactions and communication, less independence in daily living skills, higher levels of behavioral problems, less social time spent, and a higher number of non-psychotropic medications prescribed compared to autistic adults without an ID. How symptoms, behavior, and health changed throughout the life course also differed between autistic individuals with and without ID.
For both groups, some areas improved with age, some worsened, and some varied throughout different periods of their life. “Adulthood is not a static period for autistic adults. It’s not a static period for any of us. But there hasn’t been this research in the field of autism to trace the ups and downs of adulthood, when they occur, and what they are,” says Marsha Mailick, PhD, emeritus vice chancellor for research and graduate education and co-principal investigator of the lab.
The first pattern they found was a significant improvement over the adolescent and adult years for impairments in social reciprocity for those without an intellectual disability and impairments in verbal communication regardless of ID status. Both of these became less severe as autistic individuals aged.
The second pattern was of significant worsening over the adolescent and adult years for all indicators of health. Ratings of health, numbers of prescribed medications, and physical health problems all worsened with advanced age.
Although this may also be true for the general population, some unknowns remain such as whether the worsening of these health symptoms begins at an earlier age for autistic individuals.
Other patterns identified were not as straightforward. Activities of daily living, behavioral problems, repetitive behaviors and socializing with friends and relatives all improved during adolescence into adulthood, leveled off, and then worsened in midlife and beyond.
“It’s a complicated story being revealed. And these were just some of the indicators of aging, but the complexity is important, and at some level, it wasn’t surprising,” Mailick says. “Because for all of us in the general population, aging is complex. It’s multifactorial. The timing of aging in one domain doesn’t predict the timing of aging in another. But again, we don’t have this information about autism.”
Currently, autistic individuals can access more services while they are in high school than those they can access during adulthood. Midlife seems to come with periods of growth and decline for autistic individuals, and this research points to the need for the services of autistic adults to change with advancing age.
This research also aims to help autistic adults and their families better plan for their future as they age. “We should be encouraging autistic adults and their family members not to think that the changes end as soon as they’ve made the transition from high school into the early 20s,” DaWalt says. “We should be thinking about all of the life course transitions that are going to happen in the life of autistic adults. We should be anticipating change.”
This study was supported by grants from the National Institute on Aging (R01AG08768), the National Institute of Mental Health (R01 MH121438), Autism Speaks (#7724) and the Waisman Center’s IDDRC core grant (P50HD105353).
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