Marina Sarris

Date Revised: November 13, 2023

Most of Diana’s 59 years were spent trying to figure out a social world that mystified her. Finally, well into middle age, she received a diagnosis that explained her struggles ─ autism. She learned to better manage her emotions and relationships. But she worries that aging will take all that away from her.

“I’m concerned about memory loss and having trouble regulating my emotions and navigating the world when I hit my late 70s,” she says. What does the future hold for people like her, she wonders.

Unfortunately, researchers do not have many answers for autistic adults who are moving through middle and old age. At least not yet.

A small but growing number of studies suggest that Diana is asking the right questions.

Autistic adults have more physical and mental health problems than the general population, studies say.^1-2 One large study in Sweden found that autistic people, as a whole, die about 20 years younger than those who do not have autism.³ Accidents influence this death rate, but so do medical conditions, both common and rare. Autistic people with intellectual disability seem particularly affected.

“We have some very preliminary evidence that we may see accelerated and/or early aging in autistic people,” says Lauren Bishop, Ph.D., who is part of a U.S. research team that is studying aging in a group of autistic adults over time.

But, she cautions, more research is needed to show whether these early results hold up. “We just don’t have enough information on the full lifespan of autistic people. Understandably, I think, that creates a lot of distress among autistic people and their loved ones,” says Bishop, an associate professor of social work at University of Wisconsin-Madison.

What Do We Know About Autism in Middle and Old Age?

“Surprisingly little,” answers psychologist Gregory L. Wallace, Ph.D., who has published about a dozen studies involving autistic adults in SPARK, the largest study of autism. “Research has focused more on early diagnosis, so that children could be directed to interventions and services,” Wallace says.

As a diagnosis, autism is fairly new. In the United States, it was first described by a Baltimore psychiatrist in 1943 and diagnosed only rarely in the following decades. By the 1990s, however, psychiatrists had broadened the definition of autism spectrum disorder. That change, along with greater autism awareness, contributed to a sharp increase in diagnoses, the so-called “autism boom.” The children of the boom are now young adults. Their sheer numbers and their needs have created a new interest in studying autism in adulthood.

At the same time, older generations began seeking out, and getting, an autism diagnosis in their 30s, 40s, 50s, and later. About half of the autistic adults in the SPARK study were diagnosed when they were older than 17.

One SPARK participant, Emma Goldman-Sherman, 58, worries that doctors are not prepared for the medical concerns of her generation. The doctors she has seen do not know whether autoimmune and nervous system conditions are related to autism, and what to do about them, she says. “Will there be a future decline?” she says of her health.

Aging, Autism, and the Brain

Diana has similar questions. “I’d like to know if there’s a higher incidence of dementia or Alzheimer’s disease in those with autism. I’d like to know if other neurological disorders are found more frequently, like Parkinson’s Disease,” she says.

Some studies, including those involving SPARK participants, suggest that the answers to Diana’s questions may be yes.

Almost a third of people between the ages of 42 and 81 showed declines in memory and thinking on a dementia screening tool, according to one study of 210 independent autistic adults in SPARK. “These results could signal an emerging public health crisis in autistic adults as they age,” added the researchers, led by Wallace.⁴

Dementia is influenced by genes, as well as other factors. Autistic people are more likely to have some of the possible risk factors for dementia, such as diabetes, depression, high blood pressure, poor sleep, high cholesterol, and social isolation.

Other studies show that parkinsonism, a group of movement disorders whose symptoms include tremors, leg stiffness, and unstable posture, may be more common in older autistic adults than others. One study found that autistic adults were more likely to have Parkinson’s Disease, although it is rare.¹

Doctors have known for decades that another neurological condition, epilepsy, occurs more often in children and adults with autism. Epilepsy is one of the conditions that may be influencing the lower life expectancy found in the Swedish study. Another factor is suicide.

Suicide and Other Risks in Autism

Youth and adults with autism have higher rates of psychiatric conditions, such as depression, anxiety, and bipolar disorder, and a higher rate of suicidal thoughts and actions. “People with autism think about killing themselves and die from suicide at a horrifying rate,” researcher David Mandell, Ph.D., says in an editorial for the scientific journal Autism.⁵ Research shows that autistic youth are more likely to be bullied⁶ and socially isolated, which may raise the risks of depression and thoughts of suicide. For help, please call or text the Suicide and Crisis Lifeline at 988.

Mandell says that other health risks deserve equal attention. A report from the United Kingdom says that people with autism face almost twice the risk of dying early “from all causes” than other people, Mandell points out.

One common health problem that appears to affect autistic adults more often is heart disease and strokes. Almost half of those aged 40 to 88 had heart disease, according to a study of 143 autistic people with Medicaid in Wisconsin.⁷ In SPARK, about 75 percent of independent adults from age 18 to 77 reported at least one risk factor for heart disease: obesity, high cholesterol, high blood pressure, and diabetes. Those with poor sleep, which affects more than half of independent adults in SPARK, had more risk factors for heart disease.

There is some good news for older people. Autistic adults who reach age 65 are more likely to have a similar lifespan to other older adults, living into their 70s on average, according to a study by Bishop and others.⁸

Why the Higher Health Risks?

No one is sure exactly why autistic people are more likely to have physical and mental health conditions, some of which could shorten their lifespan.

Researchers say it could be a mix of genetics and outside or environmental influences. Some rare gene variations that are known to cause autism also contribute to epilepsy or other health problems.

Environmental factors that are known to harm health in other groups include stigma, discrimination, low income, poor nutrition, and social isolation. Those factors appear to occur with greater frequency in autism, although they have not been studied much.

Autism still carries a stigma despite years of autism awareness events. Autistic adults are less likely to be employed full time, which affects income and health insurance. Autistic adults also report experiencing stress, which itself can contribute to health problems, and a lower quality of life than adults without autism.

“We know that autistic people have really high levels of stress. We know that social support can be something that autistic people have a hard time accessing,” Bishop says.

The Stress of Being Autistic in a Social World Not Designed for Autism

One form of stress or distress for those on the spectrum may be the act of camouflaging, which means trying to hide autistic traits to fit into social situations.⁹

LaVell Juricich, 59, has spent decades trying to hide her autism, both in school when she was young and in the workplace now. “It’s exhausting. When I go out into the world, I have to think about the noise I hear. My brain is running 1,000 miles per hour while I think about what I’m going to say to people. Am I making eye contact enough? Am I standing too close to someone? Am I not standing close enough? We just wear out, we can’t compensate anymore, and our bodies are screaming for relief.”

The effort to fit in “took a huge toll on my mental health and I had cancer twice. I don’t know how much of that could be from stress,” Juricich says, but it’s almost a question.

Bishop, the autism researcher, hopes ongoing research studies will provide answers, along with interventions to “reduce distress and improve health” for older adults on the spectrum. “I think it’s on us, as the scientific community, to figure this out as quickly as possible, in as rigorous a manner as possible,” Bishop says.

Bishop will discuss “Health and Quality of Life in Middle-Aged and Older Autistic Adults” in a SPARK webinar on November 15.

Autistic adults in SPARK are helping to expand what researchers know about them and their concerns. They have participated in studies about their physical and mental health, social supports, sleep, depression treatments, and experiences with therapy, among other topics.

Interested in joining SPARK? Here’s what you should know.

Photo credit: iStock

References

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2. Fombonne E. et al. J. Autism Dev. Disord. 50, 3679-3698 (2020) PubMed
3. Hirvikoski T. et al. Br. J. Psychiatry 208, 232-238 (2016) PubMed
4. Klein C.B. et al. Autism Res. 16, 605-616 (2023) PubMed
5. Mandell D. Autism 22, 234-235 (2018) PubMed
6. Zablotsky B. et al. Autism 18, 419-427 (2014) PubMed
7. Bishop-Fitzpatrick L. and E. Rubenstein Res. Autism Spectr. Disord. 63, 34-41 (2019) PubMed
8. Krantz M. et al. Res. Autism Spectr. Disord. 100, 102077 (2023) PubMed
9. Bradley L. et al. Autism Adulthood 3, 320-329 (2021) PubMed