The death of Elijah McClain—reflections on living with autism while Black

Last August, a 23-year-old young man, Elijah McClain, was walking home from a convenience store close to his home in Aurora, Colorado. He had just purchased some iced tea for his brother. He was wearing a ski mask as he often did to keep his face warm because of an underlying blood condition.

A resident called the police because they thought he was acting suspiciously. He had not committed any crime and was doing nothing illegal. The police arrived and confronted him. A struggle ensued during which he was placed in a chokehold.

When paramedics arrived at the scene, they injected him with twice the usual dose of ketamine for his weight. He subsequently went into cardiac arrest on the way to the hospital and was declared brain dead a few days later.

During the altercation with the police, Elijah can be heard sobbing, apologizing for vomiting after the police choked him, telling them that he doesn’t like being touched and is an introvert, and telling them he loves them. By all accounts, Elijah was a lovely young man with a kind and gentle spirit. One of his massage therapy clients said he “had a child-like spirit who lived in his own little world. He just was who he was.”

Recently, a close family friend described to my wife how deeply affected she had been by Mr. McClain’s death. Her son, who is about Mr. McClain’s age, has autism. As she listened to the voice recordings of the encounter, she was moved to tears.

She saw many similarities between her son and Elijah, including a sweet, gentle, and innocent disposition and extra sensitivity and discomfort with being touched, particularly by strangers. Loud noises, lots of commotion, and bright lights bother him.

She spoke of preparing him for any interaction with the police, who could easily interpret his “difference” as aggression. She reminds him to tell the police that he is autistic and to call his mom. She has made him memorize her number so he can give it to the police.

She spoke of his reaction to the killings of Black men and women by the police, and how fearful he is of leaving their home alone. She talked about her fear about how others would see her tall Black son and, not seeing his “invisible disability,” might react in a way that could lead to his being harmed.

Autism

According to the Centers for Disease Control and Prevention (CDC), autism or autism spectrum disorder (ASD) is a neurodevelopmental disability characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. It affects one out of every 54 children in the United States.

Signs of ASD begin during early childhood and typically last throughout a person’s life. Because autism is a spectrum, each person with autism is different and has a distinct set of strengths and challenges.

How people with autism learn, think, and deal with day-to-day issues can range from being highly skilled to extremely challenged. This means that some people with ASD may require substantially more support in their daily lives than others, while some can live entirely independently.

ASD is sometimes called an “invisible disability” since people with ASD often do not look any different than anyone else. However, children and adults with ASD may communicate, interact, behave and learn in ways that are different from most other people.

Diagnosing ASD

ASD can be diagnosed as early as 18 months or even earlier. Unfortunately, many children do not receive a final diagnosis until age four or five, which delays their receiving the early help they need.

ASD occurs across all racial, ethnic and socioeconomic groups. Several studies have shown disparities in the diagnosis of ASD and found that children from minority backgrounds and those living in poverty or in rural areas are often diagnosed later.

Diagnosing ASD can be difficult since there is no actual blood test. Instead, doctors examine the child’s behavior and development and use different screening tools to make a diagnosis.

Causes of ASD

There are likely many causes for multiple types of ASD. A variety of factors, including environmental, biological, and genetic factors, make a child more likely to develop ASD.

A few people have expressed concern that ASD might be linked to the vaccinations that children receive. Studies have shown that there is no link between receiving vaccines and developing ASD.

Treatment

There is currently no cure for ASD. However, early intervention treatment services lead to positive outcomes later in life for people with autism. These services help children learn important skills and can include therapies to help the child with communication and interaction with others as well for improved mobility based on the child’s needs. Early recognition is, therefore, imperative.

Autism and law enforcement

Children and adults with ASD are at greater risk for wandering, abduction, physical abuse, and general victimization because of their behavioral and communication differences. They are also involved in interactions with the police as victims or suspects.

People with ASD who exhibit unusual behaviors (e.g., hand flapping, pacing, self-harming) have a higher chance of encountering the police. The police may misinterpret the behavior of individuals with ASD as challenging or disrespectful, which may put them at risk for arrest and potentially injury. This is especially true when the person with ASD is Black.

Caregivers of those with ASD should, if possible, teach them how to safely interact with the police. It is also essential that police get training about ASD to limit the chances of causing harm to a person with ASD or arresting them unjustly. What happened to Elijah McClain should never again happen.

*Author’s note: Mr. McClain’s family has not indicated that he had ASD or any other disability.

Dr. Kiragu is the medical director of the Pediatric Intensive Care Unit (PICU) at Hennepin Healthcare. He is also an associate of the Children’s Respiratory and Critical Care Specialist’s group and provides pediatric critical care at Children’s of Minnesota. Dr. Kiragu is a passionate advocate for children and is immediate-past president of the MN Chapter of the American Academy of Pediatrics and a past president of the Minnesota Association of Black Physicians. He is an associate professor of pediatrics at the University of Minnesota.