Julie Miller was the former Managed Healthcare Executive Editor in Chief until May of 2014.
As the diagnosis rate of autism spectrum disorder rises, physicians increasingly need to accommodate a population with special considerations.
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.
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.
ASD is often characterized by atypical speech and communication, making it more challenging for people on the spectrum to interact with care providers. Gross says two recurring issues contribute to barriers in the care delivery process.
First, clinicians outside the behavioral health specialty typically don’t have any practical training on how adults with ASD might communicate. For example, a patient often will need additional time to formulate verbal responses to questions. In some cases, a patient who is nonverbal will communicate by typing on a device, such as a tablet.
About one-third of children with ASD are minimally verbal, meaning they use only a small number of words or phrases, according to a spokesperson for Autism Speaks, a national advocacy group. Verbal challenges can persist into adulthood.
However, clinicians might smooth out the interaction by waiting patiently for verbal or typed responses. Consider offering multiple choice answers for questions or examples of what other people might say in reply to a particular question. It’s often helpful to speak in concrete terms and avoid figurative language, according to experts.
Nicolaidis’ research, published in the September 2016 issue of Autism, reveals that in a survey of 209 adults with ASD, 32 percent say they can’t process information fast enough to have a real-time discussion about healthcare. Patients simply need more time.
The second common barrier, according to Gross, is that clinicians sometimes default to stereotypes when communicating with adults with ASD. For example, a well-intentioned provider might share protected health information with the patient’s family without securing a HIPAA release first-as if the patient were a child and not an adult.
“The doctor might have been told that patients with autism need guardianship, which is not true,” Gross says. “They might have been told people with autism often get support and have generalized that to think they don’t need the person’s permission to speak to someone else about their health.”
She recommends clinicians communicate with the patient directly, even when a support person is present in the room. Don’t assume the other person is there to manage the patient’s health.
Also, she says, “make sure the patient is going home with treatment plans they’re able to follow.” Written instructions are often helpful.
Gross says pain symptoms are especially tricky to manage because patients might have atypical pain perception that doesn’t fit within common medical vocabulary. With this challenge, physicians can inadvertently miss a diagnosis that hinges on pain sensations.
“I’ve heard of people experiencing issues up to and including broken bones that were not detected by doctors because of situations like that,” Gross says.
She recommends referring patients to the downloadable symptoms worksheet developed by AASPIRE. The tool allows the patient to communicate concerns in detail by writing out short answers to questions, such as, “When did you first notice the symptom?” A visual pain scale and body diagram also allows the patient to indicate issues by marking pictures with circles or X’s. The worksheet can be prepared ahead of time and shared with the physician.
For those on the spectrum, one or more of the senses can be over- or under-reactive to stimulation. Oversensitivity in particular can compromise the patient’s ability to tolerate a healthcare encounter, and 30 percent of adults with ASD in the Autism report say healthcare facilities cause them sensory discomfort.
Physicians can help by reducing noise, light, and distractions as much as possible during the visit, Nicolaidis says. For example, silence equipment with audible beeping sounds and turn off room lights when window light is available.
Remember that touch can be difficult for some patients to tolerate, so clinicians should explain what they’re going to do before making any physical contact. Even a light touch can be overstimulating.
When a procedure is needed, Nicolaidis recommends physicians offer patients the opportunity to experience a trial run first. During the trial run, talk about the steps during the process and show the patient what he or she might hear, see, or feel. Also allow the patient to schedule the trial run and procedure on separate days to allow time in between to prepare for the experience.
Nicolaidis says she used the trial run approach to help one patient on the spectrum become comfortable with a pelvic exam. Previously, the patient had required general anesthesia.
The healthcare infrastructure is complex for any patient to manage, but it’s especially difficult for those with ASD. Spending time in a waiting room can lead to anxiety and can discourage interaction.
Among the respondents in the Autism report, 21 percent say they find it difficult to wait in the waiting room, and 18 percent say the wait is too long.
“If you tend to run late, it might bother all your patients, but it can be particularly problematic for a patient on the spectrum,” Nicolaidis says. “By the time you’re seeing them, it’s possible the stress level has become so great, they can’t communicate clearly.”
More than 20 percent of survey respondents also say doctor appointments are too short to accommodate their communication needs.
Nicolaidis recommends scheduling appointments first thing in the morning to avoid idle time in the waiting room and reduce distractions, such as other patients coming and going. Alternatively, the last appointment of the day can offer an open-ended visit in which the physician can allow plenty of extra time without the pressure to scurry off to the next patient. For a midday visit, consider blocking off two appointment slots to reduce the rush.
Gross recommends that in addition to allowing for more time, providers should think creatively and be prepared to “really listen.”
Julie Miller is a freelance writer based in Cleveland.