The healthcare system is failing autistic adults

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Like Hunter, many autistic adults struggle to receive good care from doctors and hospitals. These individuals often find it difficult to communicate with healthcare professionals and are misunderstood or ignored. They’re less likely to have their routine health needs met, from dental check-ups to tetanus vaccinations. “I think that as an autistic person, I’ve had to habituate to other people’s rules and comfort levels,” Hunter says.

For their part, primary care doctors and mental health providers are often unprepared to treat this population. Many are unaware that adults on the spectrum are at risk for a range of other ailments in addition to their autism: Adults with autism are almost twice as likely as their typical counterparts to have diabetes, high blood pressure and heart disease, for instance. As a result, they die, on average, 16 years earlier than typical adults matched for gender, age and country of residence, according to one study. Making sure people on the spectrum receive routine and preventive care could help bridge that mortality gap.

“A lot of adults with autism feel lost,” says Lisa Croen, director of the Autism Research Program at Kaiser Permanente, a managed healthcare provider based in California. “It’d be great if physicians had some more general training and awareness. Just like with any other condition, they really have to take into account that particular person in their office and adjust what they’re doing to meet the needs of that patient.”

Croen and others are working on a number of potential solutions — including specialty clinics, online tool kits and training programs for community mental health workers. And some autistic adults, including Hunter, are eager to offer their input.

More than half of all adults with autism have additional diagnoses. Apart from diabetes, high blood pressure and heart disease, they also tend to have obesity, autoimmune diseases, hearing impairment, sleep disorders and gastrointestinal problems — plus a laundry list of psychiatric disorders, including schizophrenia, depression and attention deficit hyperactivity disorder.

Some of these conditions, such as constipation and sleep problems, are also common in autistic children, says Croen, which may be a consequence of the autism or reflect some common physiologic or genetic ground. But others, including heart disease, more often arise in adulthood.

Still, autism is often erroneously described as a childhood condition, and children are where the vast bulk of research dollars and media attention are focused.

This is a huge issue; we see adults who still go to their pediatrician because there just aren’t enough providers for general care or psychiatrists who will see adults with autism,” says Julie Lounds Taylor, a developmental psychologist at the Vanderbilt University in Nashville, Tennessee. Lounds Taylor studies the transition of autistic teenagers to adulthood.

Andee Joyce, a former medical transcriptionist in Hillsboro, Oregon, says she has faced numerous barriers in trying to navigate the healthcare system as an adult. She was diagnosed with autism in 2007 at age 44. Thanks to her work, she knows all the diagnostic jargon. Even so, nearly everything about doctors’ appointments has been a challenge, starting with scheduling them, she says. Because telephone conversations often become garbled for her, she always procrastinates. “I only have so many spoons for phone calls,” she says.

Once she has an appointment — to see her therapist about her depression, her endocrinologist about her polycystic ovary syndrome or her primary care physician about sinus issues — arriving on time can be a trial. She has learned to write down in advance everything she wants to discuss with her doctor because, she says, “my mind and my mouth aren’t always in sync.” And she wants details — all of them.

Joyce finds dental appointments to be the “absolute worst,” between her sensitive gag reflex and the discomfort of having her mouth “stretched open like the Grand Canyon.” Some women on the spectrum find gynecologic visits the most intimidating. Autistic women are significantly less likely to visit a gynecologist and get pap smears, which screen for cervical cancer, than other women of the same age. The gap may be due to a combination of factors: Primary care doctors may assume these women aren’t sexually active, for instance, or the women may avoid visits because they are hypersensitive to touch.

Few clinics cater to these special needs. The Women with Disabilities Gynecology Clinic at the University of Michigan in Ann Arbor is one of the few that treat women on the spectrum. Unlike a typical women’s clinic, it has an array of charts, pictures and anatomically correct dolls, along with tiny speculums, so that the staff can tailor their explanations to their clients, including those with intellectual disability. Women who visit the office are also encouraged to bring advocates with them to help ensure they’re as comfortable as possible and receive all the information they require.

For the physicians at the clinic, flexibility is key, says Susan D. Ernst, the gynecologist who directs the clinic. Ernst regularly takes histories while women pace around the exam room; she doesn’t force them to sit. She says one woman she sees communicates through a voice output device and requests that Ernst dim the lights so that the exam is less overwhelming. Many women need two or more visits to get through a full exam. It all comes down to accommodating the individual’s needs, Ernst says. “These patients really shouldn’t have to be seen in a special clinic,” she says. “What we really need to do is educate providers so that any physician is able to care for them.”

The vast majority of adults with autism don’t have access to anything like the HOME program, however. Other states either haven’t considered or have not been willing to fund similar clinics that provide ongoing care.

For now, most clinicians feel ill-equipped to treat autistic adults. That was the message Croen received when she surveyed hundreds of primary care and mental health providers in 2015. “They told us that they need more resources and training to work with adults with autism,” she says.

The study Maddox conducted received similar responses. “Treating depression and anxiety is their bread and butter — they do that all the time,” she says. “But the second it’s an adult with autism who has depression and anxiety, they don’t feel like they have the comfort level or confidence to work with them.”

Awareness is at least growing among the next generation of doctors. Ernst says dental and medical students at the University of Michigan in Ann Arbor are collaborating with a local advertising firm to create and distribute a list of providers who are good at working with people who have disabilities. (Ernst is on a national list compiled by the nonprofit organization Autistic Women & Nonbinary Network.) What’s more, she and her colleagues are developing a curriculum for the medical school on caring for people with disabilities, including autism. Educating providers early in their careers, these scientists say, will make treating autistic people less daunting and help them more fully address the needs of people on the spectrum.

Until medical schools incorporate information about autism into their curricula, doctors and autistic adults have another resource to help them communicate and build better relationships. In 2016, scientists developed an online healthcare tool kit that offers a multitude of resources, from medical, legal and ethical information to worksheets that can help autistic people manage appointments. The tool kit is accessible through the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), a research collaboration between several organizations.

The centerpiece of the tool kit is an ‘accommodations report’ that an autistic adult or her caregiver can fill out and give to a doctor to inform treatments. “Because everybody on the spectrum is going to be different and have different needs, it’s really hard for me to tell a provider, ‘These are the things you have to do to take care of adults on the spectrum,’” says Christina Nicolaidis, an internist who leads the project. “[The accommodations report] provides really concrete, actionable items that providers would need to know,” she says — items such as an autistic person needing to have dimmed lights during an exam or to know how many test tubes of blood the clinician might draw.

The Healthcare System Is Failing Autistic Adults

Thanks for posting this interesting link. The Barriers to Health Care have concerned me for a long time, hence my thread in the Women's Forum which I still post on from time to time.

As a celiac myself, which is an autoimmune disease, and the mother of a child and grandmother of a grandchild with the same condition, I know that the struggle to be accurately diagnosed can be torturous, and all the more torturous for those of us on the spectrum.

I knew far more than the doctors until I finally found an immunologist who could diagnose me accurately and who knew (as I knew) that my immune deficiency with which I was born and will always have means that a lot of standard blood tests will return false negatives.

When I used to explain this to GPs, they would behave very dismissively and arrogantly, because they didn't know this. The idea that I could know better was unthinkable to them 99% of the time in those undiagnosed years.

The immunologist knew that the standard test wouldn't work for me, but that other tests might. And she was right.

That struggle took years. It was the same for my grand-daughter, also AS, treated dismissively for ages until her diagnosis was finally confirmed by a caring woman doctor. My son, also celiac, was treated respectfully and easily got his celiac disease confirmed by a male doctor.

My thread is aimed at women, because I have seen the gender bias in action in medicine many times, though perhaps some men would also relate to some of the material posted there.