Anne Kirby, Faculty, Assistant professor at University of Utah talks about her study on adolescents on the autism spectrum and what their perspective on adulthood is and how they are going to prepare for it.
Interview conducted by Ivanhoe Broadcast News in April 2018.
Tell me a little bit about the study on kids with autism that you did.
Dr. Kirby: We interviewed twenty seven adolescents on the autism spectrum to see what their perspectives and ideas were about adulthood and what being an adult would be like and the kinds of things they were thinking about for their adulthood. It was really fun to interview those teens. What we found was that they were thinking about a variety of different things when it came to their future. So one of things that came up was that they were thinking about different aspects of their employment that they might want. Some of them want to have outdoor jobs or indoor jobs or “play” with different types of “toys”. One teen talked about the toys in the construction industry and the robotics industry, and thinking about how those could become parts of future jobs.
I thought it was interesting how people were often drawn to the careers of their family. Let’s talk about that.
Dr. Kirby: Another finding was that some of the teenagers were talking about going into careers or living in places that were related to aspects of their families. If their family was a member of the military, they were thinking possibly about going into the military. If their parent was a psychologist, they were interested in psychology. And it wasn’t that all the teens were thinking about that, but it was something that a lot of the participants were thinking about and that was really interesting, but perhaps not surprising, that they wanted to model themselves after people in their lives.
What did you find that was different then a non-autistic teen at that age? What they would be looking forward to?
Dr. Kirby: It’s difficult to compare exactly to what we call neurotypical teens, because we weren’t also interviewing them. But I would say that in a lot of ways, the way they’re thinking about the future is really similar. I did have at least one teen say to me, though, “I think that it might be hard with autism”—he was trying to think about how some of the features of his diagnosis might affect his future. But a lot of them have very ambitious goals for the future–they want to go to college and have careers and live on their own and have families. And so I am really trying to think now about how we can best support these teens to accomplish their goals.
Let’s talk about that because truthfully it’s possible that they would have a tougher time just because they process things differently. What do you do with this information?
Dr. Kirby: Right, the evidence we have right now shows that teens with autism often when they move into adulthood are struggling to find employment, to maintain employment, and to be employed in areas that they are particularly interested in. Some may be finding work but it may be well below their potential. So, we want to work with teens and families and service systems to help start, as early as possible, preparing for adulthood. And like you’re saying there definitely could be challenges that they face. I advocate for starting early and working with the youth themselves to understand what they’re interested in and try to best support them for the future that they want.
What were you looking for when you started this study?
Dr. Kirby: There’s a lot of research that shows that youth with autism struggle when they transition to adulthood. And there’s a lot of discussion in the literature and in the news media about what adulthood should look like for these youth and that we need to find jobs for people with autism and we need to support them to live independently. But I wanted to step back and ask teenagers themselves what they are interested in and what they want and how they’re envisioning adulthood. Which was another part of this study is that we also asked them, “what does it mean to be an adult from your perspective?” That was really great because we got to hear directly from youth on the spectrum that they recognize that adulthood is a very complex thing. They talked about how becoming an adult it is not strictly a matter of: you turned eighteen and now you’re an adult; there’s a lot that comes with it. There is more to consider, like when do you feel like you’re an adult, when are you taking responsibilities for yourself, and things like that. And the teens that we talked to were thinking about all of those things. They were thinking about both turning eighteen and graduating high school and graduating college, those specific milestones associated with becoming an adult. But they were also talking about maturity and responsibilities, taking care of themselves and taking care of other people and animals, and taking on new roles as an adult. So they were thinking about all those different pieces of adulthood.
Your paper is published, yes?
Dr. Kirby: Yes, it is available online as an article in the academic journal, Autism in Adulthood.
What was the reaction to your findings?
Dr. Kirby: So far I think people are really interested in the fact that we are talking to the adolescents themselves. So much research is about people on the autism spectrum, but is not with them. So it’s not talking to them it’s not hearing their own voices and their own ideas. There’s some excitement around thinking about not just what adulthood is from other people’s perspectives but also from theirs. And we hope this work inspires others to work directly with youth on the spectrum and support them to have adulthoods that they feel good about.
What’s your next step after finishing this project, in association with this project?
Dr. Kirby: One of the things we’re doing is working with parents to help them prepare for adulthood with their teens on the spectrum. There’s an intervention that I’ve started to run with groups of parents, focused on helping them give more time and attention to talking with their teens about adulthood and working with their teenagers to prepare for adult life. These teens, like I said, have lofty goals for adulthood. They want to live independently often and they want to have careers. And so there’s a lot that they need to start getting prepared for if they’re going to achieve those goals. So we’re really trying to help parents and families, including the teens themselves, build skills that are going to be useful in adulthood, and have conversations early and often to help youth prepare to meet their goals for the future.
Anything surprising from your questioning all these kids?
Dr. Kirby: One of the surprising things that came up was related to the steps that youth need to take to accomplish some of their goals. Some of them were thinking far into the future and saying “I want to get married and have a family,” but they weren’t thinking, “okay, before that I’m going to need to meet someone that I want to get married to eventually.” And so kind of helping them, and their families, start to think through the different steps that they might need to take. We had one participant say, he wanted to have a “puppy child” before he had a “real child.” So, some of them were thinking through different steps: in that case, “first I want to learn how to and really feel confident taking care of a pet, before I can move on and have a child that I want to raise.” So we’re thinking about trying to harness that idea and working with youth to encourage those steps. And some people with autism really benefit from visual supports. So, we might want to map out with youth the different steps that it would take to get to the goals that they ultimately want to achieve, which could help them plan out ways to reach their goals.
It’s a nice starting point to help kids get what they want as grownups. What haven’t I asked you about the study that you would like to include in this story?
Dr. Kirby: Obviously there’s limitations to the study.
Yeah, let’s talk about them. What are the limitations?
Dr. Kirby: First, it was a relatively small group, and all the youth were expecting a high school diploma. So it was not the entire autism spectrum that we were looking at, but were looking at folks that were mostly expecting a high school diploma and generally not getting much support in high school. We also didn’t have very many females on the spectrum in the study, which was unfortunate. We ultimately had two out of the twenty seven that were girls. There’s a lot of need for more research on girls with autism. So I think we need more in that area.
There aren’t as many girls that have autism, though.
Dr. Kirby: Right, the ratio is about one female to about four males.
END OF INTERVIEW
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