Now, two new reports find this group is at substantial risk for age-related physical conditions and injuries, as well as being particularly susceptible to certain mental health issues including loneliness, social isolation and lower quality of life.
“There is accumulating evidence suggesting that when autistic individuals get older, they face considerable challenges from co-existing physical conditions,” said researcher Shengxin Liu, a PhD student at the Karolinska Institute in Stockholm, Sweden. “For instance, there was evidence on obesity and epilepsy, but the research among older autistic adults remains scarce, accounting for less than 1% of published studies in autism research.”
In the study on physical health, Liu and other researchers from two Swedish universities reviewed data on people born between 1932 and 1967 in Sweden, excluding those who died or emigrated before age 45.
The team followed them from age 45 through the end of 2013, looking at 39 physical conditions associated with age.
The investigators found that older adults with autism had higher risks of a range of conditions, including heart failure, chronic obstructive pulmonary disease (COPD), osteoarthritis, anemia, glucose dysregulation (a blood sugar level that fluctuates abnormally) and self-harm. Other conditions commonly seen were type 2 diabetes, falls, spinal issues and problems in the esophagus, stomach and small intestine.
The studies were presented Wednesday at the International Society for Autism Research (INSAR) annual meeting, in Stockholm. Such research is considered preliminary until published in a peer-reviewed journal.
Reasons for the increases in the different health conditions among adults with autism vary, Liu said.
One example, anemia, could be more common because some people with autism are selective about food.
“With these restricted eating behaviors, they might lack, for instance, iron, which resulted in iron-deficiency anemia. This definitely persisted into older autistic adults,” Liu said.
It may also be that disparities are either exacerbated or created by social determinants of health, said Lauren Bishop, an associate professor of social work and investigator at the Waisman Center at the University of Wisconsin-Madison. Bishop was not involved in this study.
Adults with autism are often unemployed or underemployed, have higher rates of poverty, housing instability and lower quality of medical care, Bishop noted.
“We also know that autistic adults experience high perceived stress and increased likelihood of feeling as though they have to camouflage their autistic traits to fit in with society,” Bishop said.
This is an area where much more work is needed, she added.
“I'm really excited that there's so much more emphasis on research on autistic older adults at INSAR this year,” Bishop said. “We're trying to make gains, but it's not something that a single research group can do. It requires collaboration internationally to be able to find out the things that we need to know to build high-quality interventions and services.”
Pamela Feliciano, scientific director for the organization SPARK (Simons Foundation Powering Autism Research) in New York City, noted there is much more awareness, behavioral treatment and attention on autism for the younger generations than was available for those who are now older adults.
She has hope that these preventable physical health issues can be more readily addressed going forward.
“I think that the solutions are just providing more supports and services for families, and more emphasis in the school context on health and exercise, and helping people with autism succeed in establishing these healthy habits long before they graduate from high school,” Feliciano said.
More attention also needs to be directed at leading healthy, active lifestyles for adults with autism, she said, acknowledging that this may not be prioritized because of other support needs in this group.
In the second study, on social connectedness among older adults with autism, researchers in London set out to study associations between quality of life, mental health problems, and the experience of loneliness among middle-aged and older adults with autism.
Using data from the AgeWellAutism study, the researchers examined answers from 428 adults aged 40 to 93 to both standardized and open-ended questions.
Before launching the study in 2019, researchers had interviewed middle-aged and older people with autism, who had raised issues of social support and connectedness.
“Our findings did align with what we expected, but I was surprised and saddened by how many of the middle-aged and older autistic participants experienced social isolation and loneliness,” said researcher Gavin Stewart, a postdoctoral research fellow at University College London.
The study found that those with autism were particularly susceptible to lower quality of life, more mental health problems and less social connection. Women were lonelier than men.
The investigators found similar results when controlling for symptoms of anxiety and depression.
Better social connectedness was a strong predictor of having both fewer mental health problems and better quality of life for those with autism.
In open-text responses, some of those surveyed said they struggled with being autistic in a world designed for non-autistic people, Stewart said. They were living with stigma and barriers to accessing employment, education and more.
“Some also mention that they don’t just lack social support from friends and family, but they also lack formal support from health care professionals, too. This means that, for some, their health care needs aren’t being met,” Stewart said.
He added that there are currently many seniors with autism in both the United States and the United Kingdom, so it’s important to provide supports now.
In modern society in general, people are lonely, Feliciano noted.
“If you are a person with autism, these things can be compounded because the social connections are particularly difficult to establish,” Feliciano said. “And in adulthood, people lose their caregivers or their parents or their primary people that keep them connected. When they lose that support network, it's very difficult to do that by themselves.”
She said a solution could be strong social supports in communities.
“I think that these two studies highlight the challenges that are lifelong in autism. It's not just the young adults and the young kids that need services and supports,” Feliciano said.
Liu suggested that one way to help could be if health care providers made their offices more autism-friendly.
Stewart said the big takeaway from the social connectedness study is that being connected is linked with better mental health and quality of life.
“So on a research level, I think we need more work around improving the accessibility for autistic people to get involved in existing socialization opportunities in their communities,” Stewart said. “And the best way to do that is to work with autistic people as research partners, as they are experts in their own experiences.”
The Indiana Resource Center for Autism has more on autism in seniors.
SOURCES: Shengxin Liu, PhD student, Karolinska Institute, Stockholm; Lauren Bishop, PhD, associate professor, social work, and investigator, Waisman Center, University of Wisconsin-Madison; Gavin Stewart, PhD, postdoctoral research fellow, University College London; Pamela Feliciano, PhD, scientific director, SPARK (Simons Foundation Powering Autism Research), New York City; May 3, 2023, presentation, International Society for Autism Research annual meeting, Stockholm
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