The medical system must fundamentally reform its care for people with autism

I entered the hospital room of a patient assigned to me that morning. Noah, an adorable boy with coiled black hair, suffered from severe autism. His mother was sitting on the hospital bed with Noah sleeping soundly on her lap. He had only been admitted for a few hours, but a lot had already happened.

During the morning handover, I had learned that my colleague, who admitted Noah, had refused to give him oral sedation before placing him on an IV, which he needed for antibiotics, despite his mother’s insistence. that the needles frightened his son and that, because he could not communicate verbally, he would lash out. When the medical team tried to insert the IV, Noah became extremely upset, punching several staff members. The team finally listened to her mother, gave her the oral sedation she had requested, and placed the IV safely and quietly.

Hours after it happened, I could still see the pain on her mother’s face – the pain of not being believed, the pain of seeing your loved one struggling unnecessarily, the pain of being misunderstood and unheard. .

advertisement

Shaking his hand, I said, “I heard what happened last night. I have a brother with severe autism. He also would have needed a sedative for an IV. I understand and I believe you.

Her eyes filled with tears and her shoulders relaxed. I saw my mother in her, who must fight the same battles for my brother.

advertisement

As a doctor with a sibling with severe autism, I can’t help but think about how the medical system fails people with autism.

Last week, a sheriff’s deputy preyed on an unarmed black teenager with autism, for unknown reasons, as the 14-year-old boy waited in line at a Target store in upstate New York. His sister shouted that his brother had autism, but that didn’t stop the deputy from using excessive force anyway.

This episode reminded me of the time my brother was thrown to the ground by a security guard despite the cries of his paraprofessional: “He’s autistic!” We are well! I’m trained to handle it! My brother, who was in his thirties at the time, was handcuffed so brutally that he was bruised for weeks. Three years later, the recall of this episode still angers me.

These situations are not unique. Autistic people, especially autistic black people, are more likely to be harmed by law enforcement. But as furious as I was about the abuse my brother suffered, I remember being relieved that he didn’t have to go to the hospital. The idea of ​​my brother being a patient was, and still is, terrifying.

When I chose to become a doctor, I thought I would receive extensive training in caring for patients with disabilities, including autism spectrum disorders. But I did not do it. When it comes to people with autism, it seems like healthcare providers are clinging to straws, not knowing what to do. I expected autistic patients to be treated with compassion, but realized that compassion is the exception: fear and disdain are the norm.

When a patient with severe or profound autism is admitted to the hospital, I hear audible gasps and comments such as, “This patient has autism. and a low IQ… it’s going to take a lot of work.

There is a lack of clinical knowledge and a lack of formal training on how to care for people with autism. Those admitted to hospital are more likely to be physically restrained because healthcare providers are generally not trained in autism-friendly alternative behavioral techniques. More than 200 ongoing clinical trials focus on autism, and information from autism research studies on a wide range of topics, from identification to risk factors to characteristics, is growing rapidly. But that knowledge doesn’t seem to translate to better clinical care, especially in a hospital setting.

What we know has worrying gaps. The majority of research funding, 98%, goes to autistic children, leaving autistic adults behind. And when it comes to people with severe autism, like my brother, they are underrepresented in research studies, even though 1 in 3 people with autism have severe forms of the disorder and may be unable to communicate verbally. . Add to that that autism research focuses primarily on white people, and black people, like my brother, and other minority groups are even more underrepresented.

It’s no surprise, then, that as children with autism grow into adults, they too are being left behind when it comes to health care. Autistic adults are twice as likely as their peers to have diabetes and hypertension, and they are less likely to receive routine healthcare, such as vaccinations.

My brother experienced it.

When the Covid-19 pandemic hit, my brother couldn’t get the Covid-19 vaccine, even though my family and I desperately wanted it. His primary care doctor made no effort to help my brother coordinate a Covid-19 vaccine, even though people with autism are more likely to have serious health problems when they get this infection. Vaccination clinics turned my brother away because he needed an oral sedative to tolerate an intramuscular injection. I contacted fellow doctors living near my brother. No one could help me.

It wasn’t until TIME magazine published my essay exposing ableism in the medical system that things started to change. Within days, my brother was vaccinated.

But I keep thinking, what about other people with severe autism or other severe disabilities out there? How many of them remain unvaccinated because the medical system has failed them?

When it comes to people with autism, I want more than awareness or acceptance – those feelings are good, but they won’t prevent people with autism from dying prematurely or receiving inequitable care in the medical system. I want justice. I want better training for health professionals, like me, so that we can compassionately manage people with autism and provide them with equitable care. I want autistic patients to stop being physically restrained because health care providers don’t have better behavioral interventions. I want funds invested in initiatives to help autistic adults and their caregivers. I want research funding focused on non-white adults and children with autism led by non-white researchers from the racial minority groups being studied. I want law enforcement to be given more education and accountability, so they stop exerting unnecessary force against people with autism. I want love, empathy and support for all people with autism, even those with severe forms, like my brother and Noah.

I know that’s a lot of “I want”. But for a community as large and neglected as people with autism, this should be just the beginning.

Amanda Joy Calhoun is a resident in adult and child psychiatry at the Yale School of Medicine’s Center for Children’s Studies and an OpEd Project Public Voices Fellow.

Leave a Comment