A recent study showed that adults with autism spectrum disorder, intellectual disability, and other mental illnesses are at higher risk of contracting COVID-19 and having more severe cases of the virus. Based on my brother’s experience, I know one reason why: ableism.
“He needs sedation!” Mom explained to the medical team. “He is not going to tolerate you placing an IV. He may hurt someone!”
My brother has limited verbal ability, so Mom spoke for him. The medical team tried to place the intravenous line anyway. My brother immediately began defending himself, hitting a nurse and scratching the physician. A medical tech walked by the hospital room, his beady blue eyes landing on my chestnut-skinned brother with a sneer. The medical tech did not see a struggling man with autism spectrum disorder—my brother—he saw a problem. “You need any help, doc?” asked the medical tech poking his head through the doorway. “No, we’re okay here,” the doctor responded. My brother froze mid-struggle. His deep brown eyes rested on the blue eyes of the medical tech. “Help, please,” my brother said clearly.
When patients with autism access the medical system, it often fails them, as it does my brother. Physicians fail to give them the support they need to feel safe, and staff fail to give them the compassion they deserve. When I became a doctor, I watched colleagues sigh when a patient with autism was admitted. “Ugh, this is going to be a lot of work.” “Yes,” I replied, frowning at my colleague. “Yes, it is.” 2.2 % of adults currently have autism spectrum disorder. 1 in 3 people with autism have a severe form—and are minimally verbal—yet severe forms of autism have been understudied. Adults with severe autism are even less studied, as the majority of research studies focus on children and adolescents with autism, leaving adults out of the picture. Patients with autism are more likely to have other medical and psychiatric illnesses, some of which could be averted or attenuated, with preventative care. Yet, they are less likely to receive routine healthcare from vaccinations to dental care, and their use of medical services declines as they transition into adulthood. Sadly, most healthcare providers are largely unprepared and untrained to treat patients with autism, leading to poor outcomes.
Even before the pandemic, my brother struggled to receive decent medical care. Once COVID-19 came, the medical system did not treat him any better. When the vaccine was rolled out, he was excluded even as I watched my parents (a physician and a pharmacist) relentlessly advocate for him to receive it. As his guardians, they make medical decisions for my brother because he does not have the ability to make choices for himself. Vaccine clinics turned my brother away because he would require sedation or a physical hold to tolerate a needle being stuck in his arm. His dentist, who routinely sedates him for his annual teeth cleaning and medical labs, did not know how to gain access to the vaccine. His primary care physician dropped the ball too, not even bothering to coordinate my brother getting the shot. I checked autism advocacy websites, full of helpful documents promoting vaccination in individuals with autism. There were no resources for individuals with autism who were denied the vaccine. I left voicemail messages for autism advocates, but never heard back.
I reached out to an emergency department physician practicing in the area my brother lives, St. Louis, Missouri. She was a former medical school classmate and friend, and I was hopeful she could help. “I would balk at giving sedation for a vaccine,” she said. She went on to robotically relay the burden of vaccinating my brother, citing that she did not want to be liable if my brother hurt someone, that the emergency department was too busy to monitor someone receiving oral sedation for a mere vaccine, and that it was a “primary care physician problem.” “No, it’s my brother’s problem,” I responded.
Plenty of reporting has been done about the profile of the unvaccinated. But, the missing pieces of the story are the many unvaccinated individuals who have severe forms of autism spectrum disorder, intellectual disability, or other mental illnesses.
How many individuals are unvaccinated because an ableist medical system has failed them? A recent study showed that individuals with developmental disabilities, like autism, are more than three times likely to die from a COVID-19 diagnosis. Yet, there appear to be no studies documenting the prevalence of individuals with autism spectrum disorders, or other severe mental illnesses for that matter, who are denied the vaccine. It is offensive to speculate about why individuals with autism and other mental illnesses are more vulnerable to COVID-19 without considering the impact of ableism—without considering that they may be denied the COVID-19 vaccine because they need disability accommodations.
To be sure, vaccinating adults with severe autism and other mental health disorders, would require additional staff, either to physically hold the patient or to ensure that they have no adverse reactions to sedation. And if the moral weight of discrimination due to disability does not sway you, then let’s look at the costs and benefits. If these individuals are not given special accommodations, and are denied the vaccine, they are 29 times more likely to be hospitalized if they contract COVID-19, adding to the billions of dollars in healthcare cost and burden on medical staff.
Primary care physicians should be spearheading this care coordination, no doubt, and the burden should not fall on emergency department physicians and staff. Additionally, the federal government should give additional funds to federally qualified health centers, enabling them to provide special accommodations for disabled individuals to receive the COVID-19 vaccine. The federal government could also provide additional funding to emergency departments, so they can get the staffing and support needed to administer the vaccine safely to disabled patients. Either way, the clock is ticking for individuals like my brother, and I hope that the medical system steps up to the plate soon. My brother is still not vaccinated, and he deserves to be.