Social isolation can exacerbate these health issues. Loneliness, feelings of alienation, and a sense of rejection are common among autistic adults and can lead to depression. Access to counseling and group activities also drastically decline after high school, leaving many autistic adults adrift. “They’re underemployed, and they miss out on social opportunities,” says Christopher Hanks, the medical director of the Center for Autism Services and Transition at Ohio State University in Columbus. “They don’t get to participate in the things that will often get the rest of us out of the house and keep us healthier, emotionally and physically.”
Jo Qatana Adell, 63, was diagnosed with autism more than six years ago. She has had a diverse array of jobs—retail, food preparation, stringing pearls, and selling books. But she has never been able to hold down a job for more than two years, because, she says, her bosses and co-workers cannot stand to be around her. “I’ve got a really strong personality, and when I’m working or stressed, I talk too much,” she says. “I really suck at masking.”
Social isolation and lack of support cause many autistic adults to miss out on preventive care and early treatment, often because they lack the organizational and planning abilities—a set of skills called ‘executive function’—to schedule and keep medical appointments or even know when they need them. “We know executive function is a difficult area, and adulthood stresses this because adulthood tends to be less structured, and there will tend to be less support,” says Steven Kapp, a lecturer in psychology at the University of Portsmouth in the United Kingdom who is autistic.
Simply accessing care can be a monumental task. Kurt’s mother had been diagnosed with dementia a few years before his stroke, but luckily, his older sister Michele stepped in after the stroke to take care of her brother. She helps him live on his own, visiting him weekly to ensure he pays his bills, fills his prescriptions, keeps up his home, and makes it to appointments. She also helped him verify his enrollment in several government assistance programs. She likens this work to that of an “air traffic controller” and says she adopted “the assertiveness and persistence of a New Yorker” in navigating the confusing public-assistance systems. Still, she found it extremely difficult to find him a doctor. Many did not take government insurance, only saw autistic children, or were not accepting new clients. In early 2016, Michele and Kurt discovered a specialty center at Johns Hopkins University, just a 45-minute drive from Kurt’s home. He was lucky to get in: According to Wise, the waiting list for new clients at the Hopkins center now ranges from one to two years.
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Part of the difficulty in finding doctors to treat autistic adults is a lack of expertise—and doctors’ own hesitation. “A lot of physicians will say, ‘I don’t know enough about this to treat you,’” Bishop says. A 2012 survey in Connecticut found that only about one in three doctors in the state has been trained to care for adults with autism, and a 2015 survey in California reported that fewer than one in three mental-health professionals there feels confident caring for autistic adults. And in Australia, Starkstein says he often has trouble admitting older adults with autism to the public hospital where he works. “It is extremely difficult to get a bed for them,” he says. A lack of specialists results not only in poor outcomes but also in long hospital stays, “something that institutions don’t like at all,” he says.