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Saturday, July 21, 2018

How to Meet Autistic People Halfway

From The New York Times

By Vikram K. Jaswal and Nameera Akhtar
July 13, 2018

Children in a third grade class that integrates children with autism with
general education students, at Academy of Talented Scholars in Brooklyn.
Credit: Joshua Bright for The New York Times

One of the most widely held beliefs about autistic people — that they are not interested in other people — is almost certainly wrong. Our understanding of autism has changed quite a bit over the past century, but this particular belief has been remarkably persistent.

Seventy-five years ago, the first published account of autism described its subjects as “happiest when left alone” and “impervious to people.”

Even now, a National Institutes of Health fact sheet suggests that autistic people are “indifferent to social engagement,” and the Centers for Disease Control and Prevention claims that some “might not be interested in other people at all.”

There is no question that autistic people can seem as though they are not interested in others. They may not make eye contact or they may repeat lines from movies that don’t seem relevant in the moment. They may flap their hands or rock their bodies in ways that other people find off-putting.

But, just because someone appears socially uninterested does not mean that he or she is.

As we point out in a paper published last month in Behavioral and Brain Sciences, many autistic people say they are very interested in, and in some cases desperate for, social connection. They experience loneliness, say they want friends and even prefer two-player games to one-player games.

As the autistic author Naoki Higashida writes, “I can’t believe that anyone born as a human being really wants to be left all on their own, not really,” adding, “The truth is, we’d love to be with other people.”

So, why do autistic people act in ways that make it appear they want to be left alone?

Autism is a neurological condition that affects how people perceive, think and move. Autistic people say that some of their apparently unsociable behaviors result from these neurological characteristics. Paradoxically, they may behave in these ways when they are trying to engage with other people.

Take eye contact. Some autistic people say they find sustained eye contact uncomfortable or even painful. Others report that it’s hard to concentrate on what someone is saying while simultaneously looking at them. In other words, not looking someone in the eye may indicate that an autistic person is trying very hard to participate in the conversation at hand. Unfortunately, this attempt to engage often gets interpreted as a lack of interest.

Or consider another common autistic behavior: echolalia. People who say the same thing over and over again can appear socially disengaged, but this does not mean that they are. Sometimes autistic people repeat phrases as a way of connecting at a deep level.

For example, one autistic boy repeated, “Chicken Little thought the sky was falling, but the sky is not falling” when his mother was despondent over the death of a friend.

Wrongly assuming that someone is not socially motivated can have devastating consequences. Being sociable is widely considered to be a fundamental part of being human. The presumption that autistic people are not sociable effectively dehumanizes them.

If you assume a person is not interested in interacting with you, then you probably won’t exert much effort to interact in the first place. This can lead to a situation where neither person wants to interact with the other. Or you might insist that he or she interact in the ways you expect socially interested people to interact.

Some popular autism interventions recommend that parents and teachers attempt to train autistic children to make eye contact or to stop repeating themselves or flapping their hands. The problem with this is that the neurological makeup of an autistic person may make it difficult or impossible for him or her to do so.

Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors and, eventually, social withdrawal.

As an autistic participant in one study explained: “I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior. There’s a point where you say, ‘To hell with it, it’s impossible to please you people.’”

The danger of being assumed to be socially uninterested is especially acute for the roughly one-third of autistic people who do not use spoken language reliably. Like other autistic people, they behave in ways that get misinterpreted, and they may not be able to correct the record.

For all of us, whether we are socially motivated at any given time depends on much more than our innate predisposition for sociability. It also depends on how we’ve been treated in the past; our ability to tune out distracting sights, sounds, smells, thoughts and feelings; and the attitudes and behaviors of potential social partners.

Autistic people have been making the case for decades that they are interested in other people, and that they do not intend their unusual behaviors to indicate otherwise. So when someone does not make eye contact or repeats something you just said, be open to the possibility that it is just his or her way of trying to connect with you.

Improving the social lives of autistic people will require putting aside assumptions about how social interest is expressed and recognizing that it can be shown in unexpected ways.

Vikram K. Jaswal is an associate professor of psychology at the University of Virginia. Nameera Akhtar is a professor of psychology at the University of California, Santa Cruz.

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