An Op-Ed essay last month about the fraught encounter between an Arizona teenager with autism, Connor Leibel, and a police officer inspired thoughtful comments, so we invited the author, Steve Silberman, to address a few in this follow-up. Comments have been edited for clarity and length.
Hen3ry in Westchester County, N.Y.: It’s not only police officers who need to understand how autistic people behave. Plenty of “normal” people should as well. What I’ve seen is this: People find young handicapped children adorable or great but once those children grow into tweens, teens and young adulthood they run from them. They also tend to react badly to developmentally handicapped adults and read various things into their behavior that aren’t there.
A. I agree completely. This is a problem for people with many types of disabilities, in part because fund-raising organizations have historically put cute kids front and center to tug at donors’ heartstrings, going all the way back to Jerry Lewis’s annual Labor Day telethons for the Muscular Dystrophy Association featuring “Jerry’s kids.” Portraying disabled people as infantile, dependent and incapable of making their own decisions adds to stigma and fear, while sidelining the needs of disabled adults for suitable accommodations in employment, housing and health care in favor of an often elusive search for a cure.
Even profoundly disabled adults (including those often described in the press as “wheelchair-bound”) can take a very active role in public life, as evidenced by the bold protests mounted last week in Washington against the Republican Party’s proposed cuts to Medicaid by grass-roots groups like Adapt.
For decades, autism was defined by the psychiatric establishment as a form of childhood psychosis akin to schizophrenia, and teenagers and adults in this country were unlikely to receive a diagnosis of autism until the introduction of the concept of Asperger’s syndrome in the early 1990s.
Furthermore, for most of the 20th century, the recommended course of treatment for autism was lifelong institutionalization, largely because psychiatrists mistakenly believed that autism was caused by cold and unloving “refrigerator mothers.” Removing the child from the allegedly toxic family environment was considered therapeutic, while parents were told that they should quietly remove their son’s or daughter’s pictures from the family photo albums and “move on.” Thus the first two generations of children with autism diagnoses disappeared behind the walls of state-run institutions as they grew into adolescence and adulthood.
The fear-mongering messaging of parent-run advocacy organizations like Autism Speaks — such as a retracted 2009 video called “I Am Autism,” which featured images of children being stalked through playgrounds by a disembodied threat that works “faster than pediatric AIDS, cancer and diabetes combined” — hasn’t helped to frame autism as what it truly is for a vast majority of those affected: a chronic condition that requires accommodations and support for life. The relentless focus on children also skews research priorities worldwide, favoring studies that focus on kids while neglecting the needs of adults, which include learning how to advocate for themselves once their parents are no longer alive.
Fortunately, that’s starting to change in response to criticism from autistic-run groups like the Autistic Self Advocacy Network and the Autism Women’s Network. In 2015, Autism Speaks appointed two autistic self-advocates to its board, which is a small step in the right direction. Autistic people should play prominent decision-making roles in any organization that claims to represent them.
From KidsDoc in New York: This article highlights the challenges special-needs people face daily. By no means do only autistic people face these difficulties. Imagine a hearing-impaired person not “responding” to an officer’s command. The real issue is not lack of training but lack of empathy and an overwhelming deference to law enforcement in this country. If you are a person of color and autistic, as many of my patients are, it is scary. The Americans With Disabilities Act mandates all kinds of accommodations, but it cannot mandate empathy.
A. You’re absolutely right that these problems are not limited to interactions between autistic people and the police. Last month in Oklahoma City, Madgiel Sanchez, a deaf Hispanic man who carried a short pipe that he used to communicate, was fatally shot by an officer outside his home as his young neighbor shouted, “Don’t kill him, he’s deaf.”
This killing is part of a larger pattern of law enforcement failing to uphold the mandates of the Americans With Disabilities Act, which requires the government to provide “effective communication,” “reasonable accommodation” and equal access to services for all disabled people. An online log of alleged incidents of discrimination by police officers, compiled by a nonprofit organization called Helping Educate to Advance the Rights of the Deaf, contains troubling descriptions of officers intimidating, tackling, handcuffing and shooting deaf and hard-of-hearing people while failing to provide alternative means of communication, such as American Sign Language interpreters.
This situation is even more dire for disabled people of color. Starting in 2010, a black teenager with autism named Reginald Latson, convicted of assaulting a police officer, endured a hellish four-year journey through the criminal justice system in Virginia, including stints in solitary confinement. The county prosecutor who handled the case dismissed the relevance of his diagnosis, determined to prove that the teenager was motivated by “racial hate” and “hate for law enforcement.” (Mr. Latson was transferred to a secure treatment facility in Florida after being granted a conditional pardon by Gov. Terry McAuliffe in 2015.)
Cases like Mr. Latson’s are not isolated incidents but a systemic problem. Last February, a jury exonerated police officers of wrongdoing in the case of Tario Anderson, a black autistic man who was taking a walk on Christmas Eve in 2014 when officers responding to a report of gunshots in the neighborhood shocked him with a Taser and arrested him. “These are police officers,” Mr. Anderson’s mother, Carolyn, said after the verdict. “We don’t stand a chance, especially when you’re poor and black.”
You’re also right that laws like the A.D.A. can’t mandate empathy, and I agree that a pervasive lack of empathy for people with disabilities is one of the most serious challenges that we face as a society. The photographs of disabled activists being arrested last week for protesting potential cuts to Medicaid should shock the conscience and motivate our congressional representatives to develop a bipartisan approach to health care that doesn’t condemn disabled people to lives of misery and poverty. In a sense, however, it’s not the job of laws like the A.D.A. to mandate empathy. It’s their job to provide people with disabilities with the means to seek legal recourse when they are discriminated against. The A.D.A. is like any other civil-rights law in that way.
Jonathan Baker in New York City: It was harrowing watching the video of Connor Leibel’s encounter with the police officer because I was expecting the worst possible outcome. But the boy’s caretaker wisely defused the situation, carefully and politely explaining the boy’s medical condition. The policeman was receptive and willing to adjust to that reality. It was a misunderstanding.
A. I agree that Connor’s caretaker, Diane Craglow, handled a frightening situation with calm, grace, efficiency and good humor. One thing that struck me on reviewing the video was how many times Ms. Craglow said, “I’m sorry,” to Officer David Grossman, as if any of the events that had transpired were her or Connor’s fault. In fact, they’d done nothing wrong.
But I also don’t blame Officer Grossman for overreacting to Connor’s behavior. I blame the kind of institutionalized neglect that puts officers on the street without the training that would enable them to recognize one of the most common ways that people with autism soothe themselves in tense situations: “stimming,” the repetitive movements that Connor was making that made the officer suspicious.
Stimming and unusual movements are Autism 101, so to speak — they’re among the first behaviors you learn to recognize by observing people on the spectrum. Given how common autism is (1 in 68 schoolchildren are on the spectrum, according to the Centers for Disease Control and Prevention), this is like putting cops on the beat who are unable to tell the difference between a drunken driver and a driver navigating through an unfamiliar neighborhood. It’s not fair to the policemen, and it’s not fair to the disabled people they encounter.
These misunderstandings have serious consequences. The traumatic memories of this incident have had a lasting effect on Connor’s ability to feel secure in public, Ms. Craglow says. Connor has become fearful of men in general, and when Connor’s grandfather offered to shake his hand recently, the boy replied, “Will you hurt me?” Ms. Craglow also says that she can hear Connor verbally rehearsing the incident to himself, as autistic people often do, saying: “You pushed me into a tree. You shouldn’t have done that. That wasn’t nice.”
Thomas Zaslavsky in Binghamton, N.Y.: There’s a bigger question here, behind the autism question: Why are the police confrontational? Why do they, as described here, provoke intensification of difficult situations? Why are they seeking out signs of guilt or of incipient violence? Behind that, why are we training them that way? Why are we providing them with face masks, or armored cars with mounted machine guns? What happened to community policing, when the police are part of the community, not enemies?
A. I think you’re right that the militarization of local law enforcement — which has accelerated under the Trump administration — increases the temptation for the police to use excessive force, particularly when they confront the unknown. That’s why I believe programs to familiarize police with the challenges that people with disabilities face are so important. A new law in Florida that requires police departments to provide autism training for law enforcement officers took effect this week. Several programs are already in place to reduce the risk of interactions between law enforcement and people with disabilities escalating into traumatic incidents. One of the best is the National Center on Criminal Justice and Disability, run by the Arc, one of the oldest and largest disability-rights organizations in the United States. The center provides an extensive list of resources for local governments, law enforcement officers, lawyers and advocates for the disabled seeking to address this problem. “We get hundreds of calls a year about this,” said Sarah Suniti Bal, the public relations director of the Arc. “It’s a very serious problem that deserves much more media attention.”
Another resource available to law enforcement is the Ruttenberg Autism Center, which provides training on autism to police departments. The main challenge for the center, said its chief executive, David M. Maola, is “convincing departments that this is something in which they should invest.”
Training programs alone, however, may not be enough to enable disabled people and their families to feel safe in interactions with law enforcement. A disability-rights activist, Kerima Çevik, the mother of a nonspeaking teenager named Mustafa, proposes the establishment of a 911-type number dedicated to handling mental-health emergencies, with community crisis-response teams at the ready rather than police officers.
In my own thinking, I keep coming back to something that Ms. Craglow said to me in the wake of Officer Grossman’s interaction with Connor. “I had to try to calm the officer down,” she recalled. “Isn’t that his job?”