Patients diagnosed with an intellectual disability can often have a hard time getting their doctors to believe them.
One day last February, Henny Kupferstein started having trouble walking. Her knees were buckling and she couldn't feel her feet, so she took herself to the emergency room at the Kaiser Permanente Zion Medical Center in San Diego. After two hours in the emergency room, her body was shaking, her teeth were chattering, she was sweating profusely, and she was losing the ability to communicate through speech—so she wrote on a piece of paper that she thought she was going to have a seizure.
Going to the emergency room wasn't that unusual. Since Kupferstein moved to California three and a half years ago to pursue her Ph.D. in psychology at Saybrook University, she's had trouble accessing routine care for managing the symptoms of her co-occurring genetic conditions, so she's visited the emergency room many times. This time, though, she was kept in the hospital for nine days, feeling increasingly ignored and disrespected by the medical staff. She says they treated her as if she was faking her illness and kept demanding psychiatric evaluations rather than addressing her physical problems. Eventually, she figured out why: A hospital doctor had learned that she was autistic and had written on her chart that she probably had "mental retardation."
This is a story about a hospital treating a woman with complex medical needs as if she were the problem, a predicament that neuro-atypical Americans fear they’ll face every time they seek medical care. What's more, the medical staff—at least as Kupferstein experienced it—did so by questioning her fundamental competency to assess and be an expert in herself. They applied the label "mental retardation" to make her own voice less potent in managing her care.
There are two problems here. First, Kupferstein does not, in fact, have an intellectual disability. Second, doctors should clearly listen to patients who do have intellectual disabilities. In fact, by mislabeling Kupferstein, they plunged her into a category of patients who are especially vulnerable to abuse in hospital settings.