University Place  Leann Smith Education and Support for Adolescents with Autism  November 2, 2013 UP942    cc >> So, Dr. Leann Smith has developed a wonderful intervention for teens on the autism spectrum and their families, and it's called Transitioning Together. It was developed here at the Waisman Center based on research we've been conducting, and it has grown over the years to become an evidence-based treatment. In other words, we've been able to compare participation in Transitioning Together, as you'll hear, with a control group and see the added benefit of Transitioning Together. And what's really remarkable about Leann is that she has developed this intervention, this program for families and their teens from the start, tested it out, involved families in the development of it, and gotten feedback from families, modified the intervention, and perfected it. So now we're about ready to go to incorporate that into the clinical services provided by the Waisman Center. So it's a real privilege to introduce Leann Smith. [APPLAUSE] >> Hi. Hello, and thank you so much, Marsha, for your kind words, and I'm really excited to follow Maria's talk because she really set the stage for me already in terms of why we want to think about providing supports not just to individuals on the autism spectrum but to the entire family system. And we can think about behavior, sleep, what's happening in school, and all these reasons. It takes an entire team of partnering with families and clinicians. 

So, thank you so much for that. What I'm going to talk about today is Transitioning Together, which, as Marsha said, is the program that we developed here at the Waisman Center based on research that's been happening for over a decade here as well as with input from families and other stakeholders about what would be most valuable. And so first I want to talk a little bit about why families need support. So, just by a show of hands it would help me know who the grandparents are in the room. If you have a child or a grandchild with a disability. Okay, great. So, hopefully this is going to be relevant to you and maybe will ring true in your experiences of seeing your children raising their children. We know that having a child on the autism spectrum can be highly stressful for their parents as well as other members of the family. And it's important to keep in mind that stress actually has long-term effects on parental health and well being. So, not just in the moment when you're feeling nervous or anxious, but there can be cascading effects on both your psychological well being and health. 

So we see higher levels of depression and anxiety for parents, lower levels of positive affect, and higher levels of negative affect. We see dysregulated patterns of cortisol in parents, mothers of adolescents and adults with autism. And cortisol is a stress hormone in your body that, if dysregulated, can lead to different diseases. And we also see an elevated level of health problems, health symptoms. So this would be symptoms of fatigue but also headaches, backaches, muscle aches, GI problems. There are a lot of different types of health symptoms and health problems that we have observed in parents of children with ASD. And I think this goes nicely with what Maria was talking about, about the different behaviors that we observe in children with ASD and how those can be stressful for parents and the caregiving burden that can be associated with children with those challenging behaviors. So this is a slide from a study we did a few years ago where we talked to mothers of adolescents and adults on the autism spectrum, and we talked to them every day for eight days in a row, and we asked them what had happened during the day. And specifically we probed for different types of stress that parents might have experienced. And this is important, these are parents of adolescents and adults with ASD. 

So this isn't even the time when they're young and going through the diagnostic process. We know that can be stressful. This is when children are older, and we actually see elevated levels of stress in every category that we asked. So, the light blue are mothers of adolescents and adults with autism, and the dark blue bars represent the comparison group of mothers who had children without any developmental disability. And on the vertical axis there is the percent of days that mothers experience this type of stress. You can see elevated levels of arguments, elevated levels of avoided arguments, and an avoided argument is when you know you could get into a fight and you could pick the fight and you just choose it's not even worth it to go there. That's what avoided arguments mean, so you may understand what that feels like. Also higher levels of work stress, which might be a little surprising. If you're at work, you're not with your child, why would work be more stressful for you? Well, we actually know and that's shown on this slide that you're more likely to be interrupted when you're at work if you have a child on the autism spectrum you're getting phone calls, you're having to leave work early, which can make work feel more stressful. Not surprisingly, over twice as often parents were experiencing stress at home at well as network stress. 

And I think this is particularly important for this group of families to know about. Network stress is when something stressful is happening to someone you love. So this could be stress your child is experiencing, your extended family. So mothers were reported higher levels of network stress when their child was on the autism spectrum. And, again, worth knowing that families are experiencing this stress, and I'm going to make an argument that we need to be providing support to families not just during the early period when the child is being diagnosed with a disability or in the early years when they're starting school and the families are trying to navigate IEPs, but we also need to be providing support to families during the adolescent period. I don't know if you can think back and remember when you were a teenager, but a lot of things actually happen during adolescence. A lot of transitions and changes in terms of your relationship with your family members, in terms of what you are doing with you peers is really different, and even on a day to day level, if you are a teenager on the autism spectrum, you're in a high school setting, you may be changing classes very frequently. You may have different peer groups at different times of the day, which can be confusing and challenging for someone on the spectrum. And so not only are you going through these major life changes during adolescence, but you're also going through a day to day, a higher number of transitions. And we know that for individuals on the autism spectrum negotiating transition and change is really hard. 

Also, we know that during adolescence and that transition to adulthood, after teenagers leave high school there's a significant loss of services. There's no longer entitlement to public education services like you have when you're in school. Some families even talk about this as falling off a cliff. The shift from having supports to not having supports can be very challenging. Also during adolescence is a time of increased risk for difficulties in terms of symptoms and behavior problems. We know that the adolescent years for anyone is when often mental health problems can begin to emerge. And so people on the autism spectrum, that's the same for them as well. And so, in general, adolescence is a time for families that can be more stressful, actually, than other periods in the course of a family. This slide is a little, there's a lot going on, but I think it's really important for everyone to understand. This is an important paper that was done by a colleague in mine and Marsha Mailick, and, as you can see, the vertical line, the black line, represents the point in time that an adolescent with ASD exited high school. 

And so the negatives reflect the  time when the individuals were in high school, and then the one, two, three, fours are the four years following high school exit. And there are two different colored lines. The red line represents individuals with an autism spectrum disorder and an intellectual disability, and the blue line represents individuals with ASD without an additional intellectual disability. So the blue line are individuals with intellectual ability in a normal range. And what you can see that when students on the spectrum are in high school, so the numbers to your left, their autism symptoms are going down, which means they're improving in terms of their social communication and their repetitive behaviors or their rigidity associated with autism. It's going down so it's getting better when they're in high school, which is great. And this is actually a trend we see in general that autism symptoms generally improve with time and with maturation, which is not surprising. But what is very concerning to me is that when individuals leave high school, their rate of improvement significantly slows down. So maybe they're making gains in social skills or making gains in their behavior, but when they leave high school the rate of improvement slows down. And this really has to do with leaving high school more so than just getting older. 

But we could think about why might that be the case that as they leave high school their improvement slows down. Well, we can think about it has to do with not having access to services, and maybe not having as many meaningful activities or places to go and things to do. This really points to the need for community activities and supports for individuals on the spectrum, both during adolescence and during the time when they leave high school. We see during adulthood, again, like I said, there are fewer services and also just fewer social activities. When you're in high school, you have peers around you every day because you're in class. That's not necessarily the case once you exit. So, again, this is why we really want to be preparing individuals on the spectrum and their families for this transition out of high school. And just to make this a little more personal and bring the data to life a little more, we, in the process to developing the Transitioning Together intervention, conducted a lot of focus groups and talked to families to find out what types of services or supports they might need. And one of the overwhelming themes in talking to families was the need for community activities and social connections for their children. One parent said, "I want to see community activities for young adults." Another said, "We badly need community supports. 

My son has no friends." And finally, "Think about all the times the child is not included in social events and the parents have to avoid neighbors, churches, and have been blacklisted from the community." And these quotes really show what it feels like to parents and the stress they feel trying to provide opportunities for their children and the reason that we need to be providing supports across the life course. So, during adolescence and beyond. So, again, we see there aren't as many supports, especially as families usher their children into adulthood even though it's a particularly stressful period. So there's a mismatch between the services we are providing as professionals and what the needs of families happen to be. So we decided here at the Waisman Center to develop Transitioning Together in order to address this gap in our evidence-based services. So the Transitioning Together program, it seeks to provide education and support for parents as well as to provide social opportunities for social interaction and learning for adolescents on the autism spectrum. And the overarching sort of theme of being in Transitioning Together and the program is really to emphasize positivity and problem solving. We know from our past work that using problem focused coping strategies and maintaining positivity within the family system is really important. So that's one of the main themes and goals of the Transitioning Together program. The program is multifaceted, so it involves individual sessions for families as well as multi-family group sessions for parents. 

So that means multiple parents come together into one group to be able to dialog and learn together. There are also eight social group sessions for teens. And we provide ongoing resources and referrals. So obviously there are a lot of things that are happening during adolescence, and you're not going to have time to discuss all concerns or address them, and that's why we would be able to provide resources to families that maybe aren't touched exactly in the curriculum for Transitioning Together. And here is a list of the different topics that are covered during the eight group sessions for parents. We talk about autism in adulthood, transitioning planning, and transitioning planning involves thinking about employment as well as continuing education and also thinking about maybe residential transition. Is the child wanting to live on their own? Are they wanting to continue to live with the family? So we talk about those types of transitions. Family topics would be thinking about the impact of having a child on the spectrum in the home. So the impact on the siblings, but also what are things that families can be doing in their home and in the family environment that's going to be most supportive for a person on the spectrum. We discuss problem solving, which is really important. 

Thinking about, often in a support group, you get a bunch of people together and you start to discuss all the things that are terrible about you life and how stressed you are and sort of venting those negative emotions in the moment Maybe you get it off your chest and you feel better. But we actually know from research that staying in that negativity and that venting of negative emotions or denying the problem and not looking at it and facing it actually is not good for psychological well being in the long run. So what is valuable is to think about how can we define a problem, figure out sort of what might be contributing, and then make a plan for how we could find a workable solution. And so when you bring a lot of families together, they all have expertise in having a child with ASD, and so we're able to capitalize on their ideas in a problem solving session with families. We also talk about risks to adult independence and ways to address those risks or barriers to being independent. Community involvement. Risks to parents own health and well being. Again, just like I presented earlier, we see that stress is high, and stress can have sort of cascading effects on health. And we also discuss legal issues, guardianship, different powers of attorney, special needs trusts, different topics that maybe families haven't started thinking about in terms of long range planning that are important to think about before children turn 18. And, again, like I said, we have a social group for teens on the spectrum, and I completely give credit to families who've participated in our focus groups for even having a teen social group. 

That was what parents brought up to us, and so we responded. For our social group, we do a lot of fun activities. There's a lot of eating, a lot of games, role plays and skits to help practice what to do in social situations. Teens talk about sharing their interests, setting their own goals. It's really important for students with any kind of disability to start to have that sense of self-determination and advocacy for themselves. So that's why we talk about them thinking about their own futures. We also help the teens learn problem solving themselves, especially social problem solving. Kids on the spectrum, it can be hard for them when they maybe are being bullied or they sort of crash and burn in a social situation. They often don't know why. So they may realize that they're having social difficulty and can even have anxiety or feeling sort of negatively about themselves, but they don't know why they're having this social  difficulty, and so we train them in doing some social problem solving as well as social planning. 

So, setting yourself up for success socially. And the teen group is tons of fun, by the way. So, like Marsha said, we've been doing work around this program for a while. Our first study was funded through the CTSA program ICTR here at UW Madison with 10 families. From pre to post we saw differences an improvements in parent's understanding of their child's disability, understanding the service system, so, again, increasing parent's knowledge about the transition. Parents also reported positive changes in their attitudes about their teens. So, thinking about maybe behavior differently and in a more positive way. And also parents were rated as having higher levels of warmth towards their teen. Again, having that sense of warmth and safety and connectedness within the home is really important for all people and all children. So we were excited to see these early findings in this first study. 

We also are working on finishing up a study that's funded by Autism Speaks. And, again, Autism Speaks are the group that also has those nice tool kits that Maria was talking about, and they fund research studies too. And this particular study, Transitioning Together is designed where it can be sort of applicable to the whole autism spectrum, but for this particular study we were focusing on teens with "high functioning autism." And it's a randomized control design, so a randomized study which is a good type of research method for this type of work. And preliminarily, we have preliminary data on 30 families so far of teenagers, and we've seen improvements in adolescent social engagement as well as improvement in parental attitudes, the family climate, and the family sense of empowerment. So they have a sense of being able to advocate for their children's needs. And we find these data to be very promising and exciting. And, again, it's ongoing so we're still recruiting for this study. If anyone has teenagers on the spectrum, you can send them our way. And I just wanted to share some quotes. I know I started earlier giving some quotes when we did focus groups about sort of the sense of isolation families felt. 

And so these are quotes from families who have been through the Transitioning Together program and their thoughts. So these are quotes first from parents. "The first time in a really long time that especially with my son I felt like we've had supports to turn to." Another parent said, "It gave me a wealth of information about what should be going on at school as far as transitioning." And as a caveat, a lot of times when parents have stress, that connection with the school and feeling supported by schools can be difficult. And, finally, from a parent, "I wish it was required for every student." And from the teens, and I think listening to teens is really fun, "Pretty much all of us had some sort of interest that people usually don't. So it was interesting. It was really cool. We could share our ideas on, like, these weird topics." [LAUGHTER] And we do find that a lot when we interview kids. They talk about how nice it was to be able to share their specific interests. And if anyone has kids on the spectrum, or grandkids, I think you know what I'm talking about here. And another teen said, "When I'm riding home after group it feels like I'm tired but I'm happy. 

It's almost like you get this warm, fuzzy feeling." So I think that really shows the sense of social connection, especially for the teens to be able to have a positive experience with peers. We also, based on what we're finding in terms of the benefit of being in an education and support group with other families, we are part of the Center for Secondary Education for Students with ASD. And we're excited because Transitioning Together is going to be part of a comprehensive model in high schools. So it's a comprehensive model to improve outcomes for high school students on the autism spectrum. And we're partnering with five other universities. And, actually, it's going to be a randomized control trial in 60 high schools across the country. And Transitioning Together is going to be one of the supports that's provided in these different high schools. So we're really excited to be part of this national project. And I want to give you just a little information about what this overall project is and how family support fits into it. So, CSESA, which is, again, the Center for Secondary Education for Students with ASD, has several components to try to improve outcomes after high school. 

And the first is foundations. And by that we mean providing professional development and coaching and support to educators around ASD. A lot of times even special educators may not have a lot of experience working with students on the spectrum. And so when we're working in these high schools, we're wanting to go in and provide support to the educators so they can in turn provide best practice to the students. There also are four main content areas that we think are really important to target with high school students with ASD. Academics is always important, but especially thinking about comprehension. Reading comprehension can be difficult for kids at any age, but especially by the time you get to high school there's a lot of reading involved, and that can be a hangup for some kids on the spectrum. Independence and behavior is another component. So thinking about helping teenagers learn to manage their own emotions and behavior and taking responsibility and having more independence. So not always having the parent make the bed for them. 

They can start to learn to do that themselves. Social clearly is an important area. So creating peer networks, peer mediated interventions directly instructing around social skills, and then transition in families. So that component is where Transitioning Together comes into play. And we're excited. The Department of Education has decided to fund this work and focus on improving outcomes for students with ASD. Part of the CSESA project is so comprehensive so that it's including families, and that's something I'm very glad to see. So just to wrap up, I want to thank many collaborators, mainly Marsha Mailick who's been a wonderful mentor and support to me, Jan Greenberg and Chris Coe, who are our other investigators here at the Waisman Center, Renee Makuch and Kate Szidon, our coordinators for the different projects, and Sam Odom and Kara Hume are the principal investigators for the core of the CSESA project, and they're in North Carolina. And there have been several different funders for all of this work over time. So we're very grateful for them. 

So, I will stop there and see if there are any questions. [APPLAUSE]