More Awareness May Help Families with Autism Feel Less Isolated

James M. Loy, Miami University

For most families, leaving the house and spending time together is an important part of life. Parents and children often enjoy dining out, seeing a movie, taking a vacation, going to church, or any number of events that can create a shared sense of community. 

But what if some families feel as if these kinds of activities are closed off to them? What happens if you can't do certain things together?

For Tracy Settleberry, Miami University visiting assistant professor of family science and social work, these questions have profound implications because they describe a daily reality for many families who have children with autism.

“What you do with your family becomes a big part of your stories,” Settleberry says. “It's what you tell. It's what you talk about. That's why it's really important to look at this. A lot of these families are just surviving by themselves. They don't know how to get out into the community. They don't know whether they'll be accepted.”

During a study designed to measure family quality of life (FQoL), Settleberry found that families of children with autism are far less able or willing to enjoy public places together.

While they were able to enjoy many at-home leisure activities, this did not offset the frustration, isolation, and dissatisfaction they experienced by feeling disconnected from the outside world.

When leisure becomes stress

According to FQoL research, those who feel more satisfaction tend to have better physical and mental health and stronger relationships. And for most families with typically developing children, leisure and social interaction are also closely linked to lower stress. 

However, when the family dynamic includes an autism diagnosis, many common leisure activities can have the opposite effect. 

“One parent told me that for two years of her child’s life, they didn't leave the house,” Settleberry says. “She never took him out. She was just terrified. She thought, ‘Not only what are people going to think. But I don't know what he's going to do? Is he going to run away from me, or have an outburst?’”

And when children get older, it gets even harder. To onlookers, children with autism can appear typical, which can cause people to act with surprise or disapproval. So many parents do worry about negative perceptions, especially if a teenager does something normally considered inappropriate for their age.

Plus, there are also a number of other stigmas and misconceptions that still remain.

Although it is no longer the case, autism was once classified as childhood schizophrenia. And the once-posited refrigerator mother theory, which claimed that uncaring maternal indifference caused autism, has been discarded throughout the medical community. But members of the general public aren’t always as equally enlightened, and new inaccuracies can still arise.

As recently as 1998, for example, the infamous Wakefield Study erroneously linked autism with vaccines. Since then, it’s also been debunked. “But people are still reeling from it,” Settleberry says. “Once it's out there. It's so hard to erase.”

More awareness can help

Families of children with autism already face numerous social and emotional challenges. But Settleberry believes that leisure should not have to be among them, and her research highlights a need for more accurate information and awareness to spread out across society.

“I'm hoping this [research] can be a building block for future interventions with the community,” she says. “How do we make the community a more available space for families of kids with special needs? So they don't have to feel bad when they go out. So they don't have to feel they're not welcome.”

In some places, this work is already happening.

In Columbus, Ohio, for example, a local restaurant chain has a system to accommodate children with autism at the parents’ request. Similarly, the COSI Science Center also regularly hosts a sensory night, as do select family entertainment centers around the region.

These places and events provide safe spaces for families who wish to get out more. But it’s also a chance for the general public to become more familiar with autism. And additional opportunities to learn are becoming increasingly available elsewhere as well.

At Miami University, all students regardless of major can now earn an Autism Spectrum Disorders Certificate. Offered as a convenient online program, it covers current research, social-emotional and communicative skills, and a host of behavior support and intervention techniques.

Those who have already enrolled say it not only increased their scientific understandings, it also broadened their social perspective. And that’s important. That’s part of what experts hope to see. Because this information can be useful to almost everyone, even those without a direct connection to the disability.

“It helps people feel less isolated,” Settleberry says. “Less judged. Breaking down some of that wall. So people feel like they can approach one another a little bit more.”