Alice A. Kuo, MD, FACP, was excited to bring her expertise on autism to Internal Medicine Meeting 2018 attendees on Friday morning.
“I think this is the first talk at the ACP meeting about how to care for this particular population,” she said. Although the focus of the talk was “Autism in Adults,” Dr. Kuo, who is professor and chief of medicine-pediatrics at the University of California, Los Angeles, began with some data on childhood autism.
“Because autism is a developmental condition, I think we'd be remiss in not thinking about where this population was in their childhood,” she said. She noted that recent increases in autism prevalence—from about 1 in 100 U.S. kids in 2010 to 1 in 68 in 2014—have led to more funding for research, but it's been very narrowly focused.
“Over 85% of government dollars that have gone to autism research have gone to the zero-to-three age group,” Dr. Kuo said. “Very little research has looked at school age, college age, and adult outcomes.”
The data that are available on adults with autism have shown poor outcomes, including low rates of high school graduation, employment, and living independently, she reported. Patients who do achieve these goals typically have received strong support from a parent, teacher, or other caregiver, described as a “protective factor” by Dr. Kuo.
“We [internists] want to be a protective factor,” she said. “We want to be able to help our adults attain the highest possible outcomes that they can.”
The challenge to internists effectively providing this support is the wide variation in function and symptoms of patients with autism. Patients' abilities range from nonverbal to college professor, and thus no single treatment protocol will work for all, Dr. Kuo said. “I wish I could tell you 1, 2, 3—the things you need to know.”
Instead, she reviewed some lessons from cases in her own recent practice, about 80% of which is caring for patients with neurodevelopmental disabilities. Many of the patients' biggest problems were not issues that would typically be seen as medical, from a high school student whose placement in a special education English class was disqualifying him from college admissions to a doctoral student who had conflicts with a roommate and academic advisor.
“Think about education, employment, meaningful activities—what we can do to get them what they need,” Dr. Kuo said.
Caregiver burnout is another common challenge with autism, Dr. Kuo noted. She described a recent visit in which she diagnosed anxiety and depression in the mother of a profoundly disabled patient. “Support the family. Look for signs of caregiver burnout,” she said. “Encourage patients to be OK with someone coming in to take care of their child so they can have a couple hours off.”
Or, in her recent case, she suggested that the mother seek government financial assistance, because she was unable to work and the family's finances were very strained. “Help them plan for the future, keep them planning ahead, and don't judge any decision that they make,” Dr. Kuo said.
Other times, the principal problems are specifically medical. Dr. Kuo described a patient whose medications for autism, bipolar disorder, and epilepsy stimulated his appetite. “We got his fixated interest to be running on a treadmill,” she said. Despite running an hour a day, the patient was still overweight, so Dr. Kuo's next step was to ask the treating psychiatrist about discontinuing aripiprazole.
“Weigh the cost-benefit of psychiatric drugs,” she recommended. “For so long, adults with autism were only treated by psychiatrists. We just need to be a counterweight to that.”
She also offered tips for seeing patients with autism in the office, including some steps that can be taken before a visit. “Sometimes I'll have parents say, ‘Can you send me a bunch of pictures of what your office looks like?’” A preview of the waiting and exam rooms can help reduce patients' anxiety during an appointment, Dr. Kuo explained. If a waiting room is crowded or overstimulating, the patient could be brought directly to an exam room on arrival.
For some patients, it might also be wise to remove breakables beforehand. “Move the flower vase, the glass jar with the tongue depressors in it,” Dr. Kuo said.
During the visit, physicians should always address patients, even if they are nonverbal. “The parents really appreciate that. One of the reasons that they describe a clinical encounter as being unsuccessful or unpleasant is when a physician doesn't even acknowledge their child,” she said. “I'll always say hi … and sometimes, ‘Is it OK if I talk to your mom?’ Even if the child has no capacity to understand that, it means so much to the family members that you treated them with dignity and respect.”
During the session's question-and-answer period, Dr. Kuo fielded multiple questions about providing procedures, including Pap smears, colonoscopies, and vaccinations. Her advice was not to force the issue. “If we cannot draw the blood, we will not draw the blood. We're not going to put the safety of our workers at risk to try to hold down a flailing patient, and we don't want to traumatize a patient forcing them to have these procedures,” she said.
It's sometimes possible to find creative solutions to procedural needs, from offering a fecal immunochemical test to drawing blood while a patient is under anesthesia for dental care, Dr. Kuo suggested.
For additional solutions, she directed physicians to the AASPIRE Healthcare Toolkit, which offers checklists and questionnaires for patients to provide information to their clinicians. “It basically gives you a heads up on how to interact with this patient with autism,” Dr. Kuo said, noting that email is often an effective means of communication for her patients.
Overall, she encouraged internists to bring support and patience to these clinical encounters. “Adults with autism and their families have traveled a long road, so when they come to you in the adult primary care office, recognize that,” she said. “Treat adults with autism like any other adult, but maybe we need to be a little more patient.”