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Reframe Podcast: Episode 52

How Autism Affects Family Life

Tracy Settleberry with student who is autistic

A disability can affect entire families in ways that are not yet well understood. While much has been done to understand how people as individuals are impacted, some researchers are now starting to look at how a single diagnosis or a disability can spread outward, to impact the lives of everyone in a family.

Read the transcript

James Loy:

This is Reframe. The podcast from the College of Education, Health and Society on the campus of Miami University in Oxford, Ohio.

A disability can affect entire families in ways that are not yet well understood. While much has been done to understand how people as individuals are impacted, some researchers are now starting to look at how a single diagnosis or a disability can spread outward, to impact the lives of everyone in a family.

So in this episode, we learn more about this family dynamic from the perspective of those who have children with autism, how it can affect their overall quality of life, and why a greater sense of awareness and understanding can help ease the burden that many of these families face. 

(MUSIC FADE)

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.

Tracy Settleberry:

What you do with your family becomes a big part of your stories. It's what you tell. It's what you talk about. So I think 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 by the community.

James Loy:

During a study designed to measure family quality of life, 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.

And according to family quality of life research, those who feel more satisfaction tend to have better physical and mental health and stronger relationships. And for most families, those 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. In these cases, social interaction and leisure can actually become stress.

In one instance, Settleberry met with one parent who had stayed home with their child for two full years, never leaving the house, never going out.

Tracy Settleberry:

She was just terrified. She was like, “I don’t know what’s going to . . . 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?” And then as kids get older, it gets even harder. So I was looking at kids between 2 and 7. But then think about a full grown 17-year-old who you want to take out with you. And you don’t know if that person’s going to run or have an outburst or. . . and all of a sudden you don’t have control anymore.

James Loy:

So many parents do worry about negative perceptions, especially if a teenager does something normally considered highly 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 completely discarded throughout the medical community. But members of the general public aren’t always as equally enlightened, and new misconceptions continue to arise.

As recently as 1998, for example, the infamous Wakefield Study erroneously linked autism with vaccines. Since then, it’s also been debunked.

Tracy Settleberry:

But people are still reeling from it. I talk about this when I have to go over research methods. Even something that is totally false, once it's out there, if it’s groundbreaking and totally different, it's so hard to erase it.

James Loy:

The families of children with autism already face numerous social and emotional challenges. But Settleberry believes that leisure should not also have to be among them. Her research highlights a need for more accurate information and awareness to spread out across society, and it can be a building block, a starting point, for future interventions throughout communities everywhere.

Tracy Settleberry:

How do we make the community a more available space for families of kids with special needs? So they don't have to feel they're not welcome. So they don't have to feel bad when they go out.

James Loy:

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 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 behavioral 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.                

Tracy Settleberry:

I hope that it helps people to feel less isolated. Less judged. Breaking down some of that wall. So people feel like they can approach one another a little bit more.

James Loy:

Tracy Settleberry, Miami University visiting assistant professor of family science and social work.

And if you would like any more information about the Autism Spectrum Disorders Certificate, or if you have any questions, you can always email us at reframe@miamioh.edu.

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*Intro/outro music used in podcasts: "Tech Toys" by Lee Rosevere