Trends indicate that clinicians are identifying autism spectrum disorder (ASD) more often than ever before. According to the Centers for Disease Control and Prevention, about 1 in 59 children has ASD, and a study in Pediatrics published in December 2018 estimates the number is 1 in 40.
However, research is lacking to track ASD trends among adults. Experts agree that the delivery system is fairly well established for children, but few best practices exist for treating adults with ASD.
It also stands to reason that the children diagnosed in the 1980s and 1990s when rates began to surge have now become adults who represent a population with unique medical and behavioral health needs. These adults face many barriers to care, including fear and anxiety related to doctor appointments, coupled with inadequate support from medical professionals.
Today’s community providers have little training on ASD and are ill-equipped to take care of adult patients on the autism spectrum, says Christina Nicolaidis, MD, MPH, a researcher and professor at Portland State University who also practices internal medicine at Oregon Health & Science University.
“I’m hopeful that we’re making progress, but we have such a long way to go,” she says.
Here are four changes practices can make immediately to better care for adults with ASD.
1. Consider each patient individually.
Adults on the spectrum are a heterogeneous group, and each patient will have different abilities and highly individualized needs. In fact, some of Nicolaidis’ research found that healthcare providers make incorrect assumptions about patient abilities. Therefore, personal information is essential to establish the patient-provider relationship.
As the co-founder and co-director of the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), Nicolaidis helped design the partnership’s Autism Healthcare Accommodations Tool (AHAT). The free online tool walks patients through a series of questions to identify what type of accommodations would help make physician visits easier for them. Responses are then used to generate a customized PDF that patients can use as a communication tool to express their specific needs. The document might include suggestions for office staff about helping patients schedule appointments when they are unable to use a telephone, for example.
“There might be thousands of different things you could do, but for a particular patient, you might only need a few of them to improve the healthcare experience,” Nicolaidis says.
AHAT research demonstrates high satisfaction with 90 percent of patients saying they would recommend the tool to others, and more than 600 people have used the tool so far, she says. The PDF can also help physicians feel more comfortable in seeing patients with ASD.
Individuals on the spectrum experience difficulty accessing services for routine medical treatment for a number of reasons, including the fact that there simply aren’t enough physicians prepared to accommodate those with ASD, says Zoe Gross, director of operations for the Autistic Self Advocacy Network, a Washington, D.C.-based not-for-profit.
“A lot of people with developmental disabilities see pediatricians into adulthood—as a general practitioner or a specialist—because they have a hard time finding a general practitioner,” Gross says.
Reduced access can translate to poorer quality of life and even early death. Gross cites a study published in the March 2016 issue of The British Journal of Psychiatry that shows the risk of premature death is about 2.5 times higher for people with ASD than for the rest of the population in almost all cause-of-death categories.
Providers should be aware that those on the spectrum tend to have medical conditions that correlate to stress, such as sleep issues, anxiety, or depression. As a population, they are more likely to have -connective tissue diseases and epilepsy as well, she says.