Interviewer: Raising the potential of young adults with autism, up next on The Scope
Announcer: Examining the latest research and telling you about the latest breakthroughs. The Science and Research Show is on The Scope.
Interviewer: I'm talking with Dr. Anne Kirby, Assistant Professor of Occupational Therapy at the University of Utah. Doctor Kirby, you've published research that suggests that how well people with autism perform in life depends a lot on their parents. Can you explain what you mean by that?
Dr. Kirby: We found that parent's expectations are what we call mediating outcomes for adults with autism. What those parents say they expect after high school ends up usually playing out.
Interviewer: What are some of the behaviors or accomplishments that you're looking at?
Dr. Kirby: So three main areas that I'm interested in and that have been explored a good deal in the literature are employment after high school, living arrangements after high school, so whether they're still living at home with their parents or other family members or if they're living with roommates or independently or with a spouse. And then finally, social participation, so how often they're interacting with friends in sort of a social manner.
Interviewer: So you found basically a link between parents who have higher expectations for their kids, those kids tend to perform better during this age. How did you look at that?
Dr. Kirby: We don't exactly know whether parents are just doing a really good job of determining what their child is capable or of if their expectations are actually driving what ends up happening. But one example of how they may be driving, what happens is, for example, a parent that doesn't think that their child is going to be able to be employed after high school is most likely not going to be encouraging their child to get a part-time job while in high school or find summer employment, participate in volunteer work in the community, or take on other roles in the household and community that might be helping them build skills for later employment. And then, that would then turn into not having those skills later in life to be employed.
Interviewer: They might not realize the potential of their child if they don't put them in situations where they look and see what they can do.
Dr. Kirby: Right, exactly.
Interviewer: Could it also be that if a parent expects more from their child that then the child sort of believes in themselves and tries to accomplish more.
Dr. Kirby: Certainly, and there are some theories that suggest that not only what parents expect but what someone expects of themselves, which can be influenced by what parents expect of them, can make a big difference.
Interviewer: I'm wondering too, how much the parents' background might play into all of this. If someone is living in poverty, they might just have other things on their mind and may not have the time or ability to put these kids in different situations, like volunteer work, as you say, or things like that.
Dr. Kirby: Certainly, and so we did find that parents from a lower income background have lower expectations for their children and their children are having these less ideal outcomes that we studied. And I think the example you just gave is right on point in the fact that those families might have a lot more that they're dealing with and might not have the same resources to devote to helping build those skills.
But the other thing I've thought a lot about is that you can imagine a parent who's been struggling to be employed themselves would be less likely to think that their child with a disability is going to be able to find steady, high-paying employment if they're having trouble with that. And so some of it could be resources, but some of it could be perception of possibilities.
Interviewer: How much of a difference was there between kids whose parents had high expectations and kids whose parents didn't?
Dr. Kirby: So I think it's really important to mention that despite the fact that I'm saying high expectations lead to better outcomes, the outcomes are overwhelmingly poor. So very, very few people with autism in this national sample of over 1000 people with autism had employment of any kind at the end of this eight-year study. So they were in their 20s during this time. Similarly, very, very few of them were living independently and very, very few of them were socializing at any rate with their peers or friends.
Interviewer: I wonder how much of that, though, is just what is out there for these people to begin with. I mean, I think it's still a very new idea that people with autism can join the workforce.
Dr. Kirby: Right. And it's been said often that leaving high school for this population is like falling off a cliff. It's something that parents talk about and has been written about in the literature and popular news type articles. It's kind of repeatedly referred to as this cliff because they no longer have somewhere to go every day where they know what's expected of them. The world drastically changes for them after high school and at the same time, services are just totally disappearing. So they might exist. Vocational rehab is there and can help, but often families find themselves on wait lists for extremely long periods of time.
Interviewer: So how are you following up on these results? What are you doing next?
Dr. Kirby: So what I really want to know now is if we could make a meaningful change in what parents expect for their children and if that could then make a positive difference in outcomes for people with autism. And if that's possible, then it really might be a really important target for intervention, to not only focus only on intervening directly on children with autism and trying to give them work skills through groups and programs, but to work with families to really make a difference and how families are structuring what they do throughout the high school years to really prepare for life after high school.
Announcer: Interesting, informative, and all in the name of better health. This is The Scope Health Sciences Radio.
