Older adults with an autism diagnosis are a relatively new phenomenon. The first person ever diagnosed with autism, Donald Triplett, is now 87 years old.
Donald has lived a full life, graduating from college, working at the family bank, traveling around the world and playing golf.
Yet, as we’re “seeing people with developmental disabilities in geriatric care settings,” there aren’t guidelines to ensure their appropriate and effective care, says Lauren Bishop, MSW, PhD, an assistant professor at the University of Wisconsin–Madison School of Social Work and investigator at the Waisman Center.
“We don’t know much, really, about what happens to autistic adults in midlife and beyond,” Bishop says. “You hear stories from families where their adult children didn’t realize that something was wrong or doctors didn’t realize that something was wrong until they were very, very far along in disease progression. That is a big public health problem.”
Diagnostic practices for autism have changed over the years, with diagnostic rates rising dramatically in the 1990s. Currently, one in 59 U.S. children has an autism spectrum disorder diagnosis. Conservative estimates of costs for autism-associated medical care, social supports and lost work total $461 billion by 2025.
To better understand the health needs of autistic adults, Bishop studied the electronic health records of deceased people who had received care at Marshfield Clinic in central Wisconsin. She and her colleagues compared the records of 91 autistic adults with a similar group of more than 6,000 people without an autism diagnosis.
“We found that autistic people have many more health problems and that they have different patterns of health problems before their death,” says Bishop. “Autistic people have higher prevalence of long-term medication use, epilepsy and developmental problems. They also have higher prevalence of urinary, motor and respiratory problems, infections and cardiovascular disease.”
Bishop’s analysis also confirmed earlier reports of a 20 year decrease in life expectancy for autistic adults. “We’re now seeing that life expectancy is increasing, on average, to about 60,” she adds, “and some people are living well into very old age.”
To further characterize autistic adults’ physical and mental health, Bishop turned to Medicaid data.
Looking at four years of Medicaid claims for autistic adults across Wisconsin, “We see a relatively clear pattern of more physical and mental health problems that typically begins earlier in autistic adults, compared to the general population,” says Bishop.
These autistic adults, who were on average in their early 50s, have high rates of sleep disorders, psychiatric disorders, cardiovascular disease and epilepsy. Autistic adults with and without intellectual disability, as indicated by having an IQ below 70, have similar health issues.
“What this tells us is that there may be a health burden to autism—but not necessarily to intellectual disability—that’s driving the health differences between people with autism and the general population,” says Bishop.
Based on input from autistic adults, Bishop encourages healthcare providers to be sensitive to the needs of their autistic patients by:
- Moving autistic patients from busy waiting rooms to quiet exam rooms early;
- Asking if dimming the lights, silencing machines or removing other distractions would make them more comfortable during their appointment;
- Using simple, descriptive, concrete language;
- Using visuals and putting important information in writing;
- Giving them more time during appointments to express concerns and ask questions;
- Asking how they want to receive information between appointments;
- Ensuring that their medical power of attorney, advance directive, permissions for family members to discuss their care, and other important documents are on file; and
- Encouraging future care planning.
Bishop’s future work will test ways to address the health disparities that she’s documented among autistic adults.
She plans to adapt a program that’s been shown to help young adults with autism reduce their stress and improve how they rate their own health. She will tailor the program for older adults and add patient navigation training, to “hopefully help people with autism better navigate healthcare systems.”
Bishop’s overall goal is “to create prevention efforts that can help people with autism live long, healthy and self-determined lives in their communities.”