At the age of 18, Oliver McGowan was hospitalised in the UK after suffering repeated seizures and pneumonia. He was autistic and he and his parents urged the medical team not to put him on antipsychotic medication; when he had taken them previously, it had worsened his seizures and had a terrible effect on his mood. Despite his family’s vehement opposition, doctors prescribed him antipsychotics. A few days later, Oliver suffered fatal neurological side effects. A week later, he was taken off life support. An inquest into his death found that the medication had caused a rapid deterioration.
After his death in 2016, his mother, Paula, launched a campaign to make intellectual disability and autism training compulsory for healthcare workers. In 2022, the UK’s National Health Service listened. All NHS healthcare workers must now complete both online modules and live interactive sessions covering the communication and sensitivity required for this demographic. The US needs to follow suit, starting with medical school.
There are 7.4 million Americans with intellectual and developmental disabilities, yet doctors often feel uneasy treating them. In a recent survey of 714 Massachusetts physicians across a range of specialties, only 40% said they were very confident treating patients with physical and intellectual disabilities, and only 56% strongly agreed they would welcome patients with disabilities into their practice. In another survey, 77% of doctors said they had poor or fair ability to treat patients with autism in particular. It’s no wonder families have a hard time finding a disability-friendly clinic, or why people with intellectual and developmental disabilities are four times more likely to have unmet medical needs than neurotypical people.
I know firsthand what these barriers look like because my twin brother is one of nearly 1 in 10 U.S. children diagnosed with an intellectual or developmental disability. He is severely autistic and nonverbal, and our family lives with anxiety about even taking him to the hospital or finding a doctor who will treat him. This summer, my mother had to call 12 oral surgery clinics before she found a surgeon who was willing to remove my brother’s painful wisdom teeth. Now, as a freshman in medical school, I’m beginning to understand why the health care system is so unwelcoming to people with intellectual and developmental disabilities (IDD).
Many schools that do offer education on these topics do so only as electives and tend to attract self-directed groups of students who are already interested in IDD health, particularly those pursuing training in neurology or psychiatry.
But anyone who wants to work as a physician in any specialty needs to know how to work with patients with IDD. My brother sees his family doctor, dentist, allergist, ophthalmologist, and gastroenterologist. Women and girls with IDD also need regular care from their gynecologist. These patients need the full range of medical care, which means learning how to care for them should be a mandatory part of medical school curricula.
But efforts to integrate more IDD education have been slow. In 2009, the American Academy of Developmental Medicine and Dentistry created a funding source to eliminate financial barriers for all U.S. medical schools to integrate strong IDD education into their curricula. The National Curriculum Initiatives in Developmental Medicine program provides grants and resources to schools willing to implement this curricular addition. As of 2023, only 15% of U.S. medical schools have taken advantage of these grants.
I am so grateful to attend one of the few medical schools that began this initiative just four years ago, and while there is still room to grow, our curriculum is beginning to embody the type of IDD education that every medical student in the country should receive.
1. Providing a long-term experience: Most medical schools have three phases of training: preclinical classroom learning, clinical rotations, and postclinical time. Ideally, IDD-related content should be integrated into all three phases. At Harvard, students get their first exposure to IDD in their first semester genetics course, when they encounter adults with Down syndrome. In preparation for their clinical rotations, students have sessions on working with caregivers and patients with disabilities. After the rotations, students are offered the opportunity to learn more about these populations in electives such as “Children with Neurodevelopmental Disorders” and “Developmental Pediatrics and Learning Disabilities.” By incorporating these into four years of schooling, schools send a clear message: patients with IDD should be seen by doctors who are competent to care for them.
2. Teach them what questions to ask: Clinicians have a responsibility to ask questions that gather relevant information, such as allergies, family medical history, and medication use. For patients with IDD, additional questions are needed. Do certain stimuli agitate or overstimulate the patient? How does the patient communicate? Do they have sensory differences? For example, a clinician asking these questions would learn that my brother is overstimulated by loud voices and has an unusually high pain tolerance. As students at my school transition into clinical placements, they begin receiving direct instruction on how to effectively interview patients with disabilities and how to balance caregiver participation. Other schools provide additional “standardized patient interviews” as a cornerstone of clinical training, where students must communicate effectively within contrived scenarios that pose as patients with IDD.
3. Teach them how to adapt to the patient’s needs: Asking the right questions can help future physicians have a smoother consultation with IDD patients. This kind of hands-on training to help accommodate IDD patients is still an area of work in my school. For example, if I see that a patient struggles with the concept of time, that’s my cue to use a visual timer or schedule to keep the patient motivated throughout the consultation. If I see that bright lights overstimulate the patient, that’s my cue to dim the lights before they come on. My childhood dental hygienist always scheduled my appointment right before my brother’s appointment so he knew what to expect and would sometimes sit in the chair for his teeth cleaning instead of lying down under the bright lights. In preparation for the dreaded vaccination, my pediatrician placed colorful lollipops on the counter so my brother would get a tangible reward. We found these providers through word of mouth from other IDD families, but we were well aware that most providers were not accommodating. Medical students learn to adapt to different patient populations, such as pediatrics and geriatrics, and the IDD patient population is no exception.
In recent years, many physicians and disability advocacy groups have called on the Liaison Committee on Medical Education (LCME) to require IDD curricula for medical school accreditation, but these demands have remained unanswered.
Fortunately, medical education is constantly evolving, responding to a fundamental imperative to meet the changing needs of society. In response to the growing opioid crisis, 95% of medical schools now educate students about opioid addiction, and in response to growing social awareness, many schools are developing curricula on LGBTQ+ health. Disability education should follow suit.
Romila Santora is a first-year medical student at Harvard Medical School.
Correction: This article has been updated to remove an incorrect statement about a study of medical school education on intellectual and developmental disabilities.