Wisconsin Public Television University Place Autism: A Day With Experts  Leann Smith Intervention for Adolescents with ASD  January 28, 2011 UP675   cc >> Okay, I am going to switch gears and talk about a different type of research we're doing here at the Waisman Center, and I'm really excited to share with you about a program we've developed here called Transitioning Together, and it's an education and support program for families of teenagers on the spectrum. And I'm going to give you a little bit of our agenda so you can track with me how far we are in the talk so in case you're starting to get antsy, you'll know where we are. First I'm going to talk a little bit about some more recent research on why we need to be providing supports to the entire family. And obviously focusing on providing supports and services to the individual with autism but also to the family system. So I'll do that and then I want to focus in on adolescence as an important time in the life course of the family. It's an important turning point, and I have some new data to show you about adolescence and adulthood, and then I will move in and talk about our Transitioning Together program, and finally wrap up with some next steps and let you know what we're doing in this area. So, first just as a general background, parents of children with ASD often report higher levels of stress than parents of children both without a developmental disability but also more stress than parents of children with other types of developmental disabilities. So Down syndrome, fragile X syndrome, CP, and undifferentiated developmental delay, but that basically is a developmental delay where we don't have a specific cause or diagnosis. And importantly, this pattern of elevated stress for parents we find it across the life course. So parents of very young children all the way through parents of adult children, they're reporting higher levels of stress than other disabilities. 

And what I want to show you here is from a study we did looking at daily experiences of mothers of adolescents and adults on the spectrum. And what we did, we talked to moms every day for eight days in a row and asked them how they spent their time and what types of stressors they might have experienced during the day. And what you can see, the light blue bars are moms of teens and adults with ASD, and the brighter blue, darker blue bars are moms of similarly aged children without any developmental disabilities. And you can see that moms of young adults on the spectrum were reporting higher levels of stress in basically every domain we asked about types of stress they might have. So 25% of the time, moms of children with ASD were reporting arguments, avoided arguments. So, you know, when you feel like fighting and you decide it's not worth it. [LAUGHTER] That was happening 25% of the time. So maybe there are some parents here who know what I'm talking about. [LAUGHTER] So we also found what I think is interesting, they were more likely to have stress at work as well as, not surprisingly, 25% of the time having stress at home. And actually had higher levels of network stress. 

So by that we mean stress that's happening in the life of a loved one or a friend or someone they know, and that's kind of spilling into their life too. So basically, everywhere we look we find higher levels of daily stress. And sort of similarly, this is showing, we asked moms if they had experience of fatigue during the day and so 50% of time of the week we talked to moms, 50% of the day they were reporting feeling fatigued. And you can think about sort of how that would add up over time. So these are moms of teenagers and adults, and so we didn't even ask moms of much younger children what they're levels of stress might be. And I also want so show interference with work. So about 20% of the time, so you can think about one day a week, moms are reporting being interrupted at their jobs or with their work. We didn't say, can you tell us is it because of your child? But perhaps you can think about perhaps it might be related to caring for their adolescent or adult on the spectrum. And we know that stress has important impacts on both physical health and psychological well-being. We know this from the general literature time and time again. 

And we also know from our study of mothers of adolescents and adults that having these high levels of stress over time can put you at elevated risk for anxiety or depression, also can influence your day to day mood, so your feelings of happiness or sadness on a day to day basis. We also have a series of studies by Marsha Seltzer and different colleagues looking at cortisol which is a stress hormone in your body, and we have evidence of moms of individuals with ASD having disregulated patterns of cortisol across the day. And we think this is really concerning because cortisol is important for a lot of different health processes. So because of this finding on cortisol, very recently we were interested in health problems and health symptoms of parents of individuals with ASD, so we recently had a paper coming out in -- where we looked at daily physical health symptoms for moms, and again this is the same study where they were reporting on their daily levels of stress. And we find that, again, autism is the light blue bar, and the darker blue are the moms with kids without disabilities. And you can see higher levels of headaches, back aches, muscle soreness, joint pain and even dizziness. And so these are a variety of different problems. And if you think about 40% of the time they're having some sort of joint pain, muscle pain, and you can think about sort of expanding that over the course of life. The physical toll that care giving may have and the stress may have on parents. So, all that is to say I think we need to be supporting and thinking about not only the individual on the spectrum but also their parents and what types of services they may need. 

And next what I want to do is turn and focus on some newer data we have about sort of trajectories into adulthood for individuals on the spectrum and really thinking about how adolescence may be a particularly important time to be providing supports to the family. Like I said, adolescence is an important time. A lot of things happen during adolescence. I don't know if you remember your own teenage years, but it can be kind of stressful. People with autism are no different, it can be stressful. We have important transitions both entering into adolescence, you can think about puberty and the changes that are associated with that, but we also have a major transition which is leaving the school system. You hear anecdotally a lot of parents talk about leaving the school system might be like falling off a cliff because of the changes moving from the education system to the adult service world. It can involve a lot of change. And unfortunately, during adulthood there often are fewer services and supports available to individuals with disabilities after they exit the system. And also, I don't have the different citations for the different studies but this is pretty well documented that individuals with ASD receive fewer services after they exit high school and often have fewer social activities and fewer opportunities for involvement in the community in different social activities. 

Also, for adults with ASD have more unmet service needs compared to other groups. So, for instance, individuals with Down syndrome. And this is concerning and something we need to be thinking about. Like I said, there are fewer services and fewer opportunities for social engagement and community engagement for adults on the spectrum after they leave high school. Meaningful activities and services may be really critical for adult independence and being fully included in the community and having a meaningful life. And so I want to show two different papers that we're in the process of working on, and recently completed that really maybe are indicating that we need more meaningful activities for adults on the spectrum. So this is going to be a lot of data, and I just want you to be thinking about, as we're looking at the data, what this might mean in terms of needs for activities for adults on the spectrum. And first I'm going to talk about a recent paper by Julie Taylor and Marsha Seltzer that shows changes in autism symptoms before and after high school exit, and then another paper that we are currently working on looking at changes in daily living skills. So first, here we looked, this is again by Julie Taylor and Marsha Seltzer, we're able to look at autism symptoms as measured by the Autism Diagnostic Interview-Revised, ADI-R, and looks at the different domains or areas of impairment of autism. We're able to look at the four years while in high school, prior to high school exit, and the four years after. 

And so the solid, black, vertical line is when the individual left the high school system. And we know that you can exit school in different ways. So some people may graduate on time with their peers. Some will take advantage of IDA and stay through age 22. Some individuals on the spectrum may just drop out of school. So really what we're meaning here is they've exited the school system, and they're not receiving any services. And just to orientate you to the colors, the blue line is for individuals without intellectual disabilities, and the red line are for individuals with an intellectual disability. So, as you can see, for everyone, while they are in high school and receiving services, their autism symptoms, so their level of difficulty in communication, their level of difficulty in social interaction and their repetitive behaviors, all of those symptoms are going down during the high school years. And at the time of high school exit we see a pivot or a turning point in the nature of change. And after high school, the lines are still going down. 

So you can see that, but the speed of improvement slows significantly so they really are not seeing improvements as quickly anymore. And this is on all of the domains of the ADI-R and we saw this pattern. What's showing up on the screen are for repetitive behaviors. So we know individuals on the spectrum often have restrictive interest or repetitive behaviors, and so that's what this slide shows. And next I want to show some data from a paper we have under review currently with Matt Menard, who's another postdoc here at the Waisman Center, and Marsha Seltzer. And we were interested in looking at daily living skills across the life course. And what's exciting, we have data across a 10-year period in of life of an individual on the spectrum. And because we had individuals that were between the ages of 10 and 50 at the start of the study, we're able to piece all of their trajectories over the 10 years together to give us an idea of what might happen from 10 all the way up into the 60s which I think is really exciting, and it's a fun type of statistical analysis if you're ever interested. What you can see on the far left are their daily living scores where a higher score means greater levels of independence and having more daily living skills. And the highest score on the measure is a 34. 

So that would really indicate high levels of independence, and these types of skills that we're measuring here have to do with making your own bed, fixing a sandwich, managing your own daily finances, keeping track of cash, those kinds of things, things you really need to have to be able to be functioning independently as an adult. And as you can see, for individuals on the spectrum, and again the red line are individuals who have an intellectual disability and the blue line are individuals without on intellectual disability, and so for both groups you can see over the course of adolescence, we see really great nice gains where people are gaining skills and having more independence. And you can see there are the solid lines but also the individual lines. Those each represent a different person in their trajectory. But what is concerning is by the end of the 20s, especially for individuals without an intellectual disability, there is a flattening of growth. So they stop making gains and actually start to demonstrate a decline. So loss of skills which is very concerning, and again, you can be thinking about this is the same time where we're talking about they're having fewer meaningful activities and things to do. And what I'm going to show now is just to give you a little mental comparison. We had similar data for individuals with Down syndrome. We were able to look at trajectories in the same way for individuals with Down syndrome. 

And you can see they do not, they have a different type of pattern than we saw in individuals with ASD such that they just have a slow, steady rate of gains of skills across the life course. And so here you can see them together where it's really clear that individuals with ASD are gaining a lot of skills during adolescence and early in adulthood but seem to level off and then start to decline, and we're not seeing that same pattern in individuals with Down syndrome. And we can think about what might be some of the reasons for that and what types of services are available to individuals on the spectrum versus individuals with Down syndrome. So we don't have all the answers yet, but I want people to be kind of thinking along these lines. So just in summary, thinking about adolescence and the early adult years I think are really important, and I think we have a lot of research now to show that we need to be providing supports to the entire family as well as the individual with ASD. Thinking about daily living skills and how they may be plateauing and declining. Who's going to be helping do things like keeping track of the money and those types of skills is probably going to fall onto the family. And then we need to be providing supports across the whole life course. You spend a lot of time as an adult, not quite as much time as a child, so we need to be providing supports during the early childhood years but also during adulthood. And, just in general, we know there are fewer services, and so that's what the Transitioning Together program is designed to try to help parents prepare and fill that gap of preparation. 

So next what I'm going to do is switch and talk about our pilot study for the Transitioning Together program. And I'm really excited to get to share some new data with you about our project. So we received funding from the CTSA here at the University of Wisconsin to develop and pilot test an intervention program designed especially for families of teenagers with ASD. So our first aim from that pilot project was to develop an intervention program. There wasn't anything like this when we started, so we had to start from the beginning, and also to pilot test it, not to see necessarily large effects but for feasibility and acceptability in the community because we know if this isn't something families are interested in or something that's needed by families, there's no need to create a program. So our first aim was to develop a curriculum, and we started off by looking at different models of interventions for families that might be useful. And so we decided upon the multi-family group psychoeducation model that has been used by McFarland and others and has been found to be really beneficial and useful in families with other conditions other than autism. And so we thought maybe we could try this type of model in autism, and it needed to be adapted a little because we know autism is unique and heterogeneous. So just sort of the overview of this type of model really emphasizes providing education and information about the disability, really heavily focused on providing knowledge that may not be there and encourages the use of problem solving strategies. So we know from other studies, including in families of individuals with autism, that the type of coping strategy you use in the face of stress can make a big difference in terms of your emotional well-being and your health. 

So focusing on being problem focused and working for solutions when stress arises. So that was another emphasis of this type of model. And then also encouraging positivity both for the parents, for the entire family. Just really encouraging positivity. So after deciding on that type of model of implementation of an intervention, we selected content for the curriculum based on a thorough literature review, and really thankfully, here at the Waisman Center because of Marsha Seltzer, there's been a now 12-year study of adolescents and adults and their families on the spectrum. And we were able to draw heavily from the findings from that study to be able to develop this intervention. So the Transitioning Together program really is a Waisman Center program in every way. And after developing sort of our ideas for what might be valuable to include in terms of information for parents and families, in the intervention we conducted focus groups. We did three focus groups to receive feedback about the intervention. Participants were family members of teens and young adults on the spectrum as well as professionals providing services to families, and we actually had one young adult on the spectrum participate as well. 

We centered our questions around the content of the curriculum. So is this information parents would want to know about or not if we were to provide this service, and what's the best way to go about providing information to families. So we asked a lot of different questions in the focus groups. And we recorded the focus groups, we transcribed all of the comments and then were able to analyze the comments for themes that might arise from the focus groups, and basically all the comments fell into three different categories of themes. So topics that families wanted to learn about, the needs of families, and ideas to make the program work. And so these were our three main themes, and I just have to say thank you to everyone who's ever participated in research because it really does help us design programs. So it was very useful to do the focus groups. And basically a lot of ideas were generated during the focus groups that were really helpful for us. In terms of topics, families talked about wanting information on self and family care, future planning, any legal issues, safety issues, also questions about dating, college, because again we're thinking about teens. Also really talking about the needs for families, the needs for advocacy, resources and referrals, and a lot of needs centered around needing community activities for their teen and things in the community their teen could be doing. 

And then a lot of great ideas from families during the focus groups about how to run a group for parents that would be fun and having activities for teens, and this was perhaps the most useful information for me was that we really needed to have a group for teens if we were going to have a group for parents. So that was really good learning for me. Also we needed to have some snacks. [LAUGHTER] Also something I wasn't thinking about and then, oh, yeah, we need to feed people. And another one was have college kids, especially if they could be pretty girls, that would be fun for the teens. [LAUGHTER] So some really good ideas. I try my best to accommodate families. So based our focus groups and our literature review, we came up with a program that we call Transitioning Together. And the program has four different main components. I'll sort of go through them here. 

So the first thing we do after families enroll in the program is we have joining sessions where you meet one on one with families to try to know sort of what they've been through. I know that there's a diagnostic odyssey for a lot of families trying to know, to finally get an ASD diagnosis, what was that like, a lot of changes in doctors, changes in IEP. So we want to get all that information and know based on what's happened in the past we're they're hoping to go in the future and know their goals for being in the program. Everybody comes in looking for specific things when they're thinking about the transition, and we want to partner with families to try to help them think through those goals. And then we also have eight multi-family groups sessions. So it's eight consecutive weeks where we provide information to families and also work on thinking about if a family is having an individual problem, how we can work together as a group and really draw on the expertise of the other families and other parents in the circle to see what we can do to solve these problems and talking about positive coping strategies that we've seen in the literature that we know are beneficial and have been shown to be beneficial for other families. And then at the same time we have a social group for teens that meets at the same time the parents do, and we also provide a lot of resources and referrals to families based on topics they might bring up. So we have a wonderful family resource center here at the Waisman Center, and so we partner heavily with them and try to find other programs or dentists or whoever they might be looking for. So here are the topics that we talk about in the parent group sessions. And we talk about autism in adulthood, so I'll share with families the same types of things I just showed you in terms of the improvements during adolescence, but then we know it slows down after you leave high school. 

So we might talk about that in terms of what autism looks like during adulthood, provide information on transition planning, someone from DVR comes to talk about employment, as well as problem solving, the risk to parent health and well-being, legal issues, so bring in an attorney to talk about guardianship and other topics. These were all topics that during the focus groups we really felt they seemed to be what families would be interested in. And then we also have at the same time that parents are receiving this information, we have a social group for teens. And the social groups can look really different depending on who is in the group. And so different types of activities have included skits and role plays, talking about their week, cooking or baking, art, music, we brought in a Wii once. That was exciting. Everybody likes Wii games. So our next step after developing the curriculum was to do a feasibility study to see if this would be something parents would be interested in participating in. So we had 10 families. Mothers, fathers and the teens. 

The teens themselves were between the ages of 15 and 18, and we collected feasibility and acceptability data at each parent session, we collected. And then we also did interviews with parents before and after being in the intervention, again to try and get their level of satisfaction and interest in the program. And thankfully, the intervention seems to be feasible for families. All families stayed with us in the course of the study. And we actually did a reunion meeting, and all but one family came back for the reunion. So we felt that families really had felt some connection and were glad and happy to be in the group. And I have a quote here from one parent that I think sort of nicely summarizes the experience. The parent said: It was very nice to sit back and learn from other people and also put our two cents into the conversation. We're absorbing and we're sharing. Sometimes just doing that is a great stress reliever. 

And that was very exciting for me to hear because, again, we're concerned about parent stress, and really we're hoping that families can both contribute and share with other families based on their expertise and then gain something from being in the group. And we also, because we are researchers, we asked a few other questions of families just to see if there might be any suggestion or hint that this would be beneficial in other ways than just parents feeling satisfied. And so from before to after the intervention, we did see some significant changes. So from after the intervention, parents reported an increase in their understanding of their child's disability. Parents also reported positive changes in their attitude about their teen. So more likely to feel happy or proud of their teen and more likely to report having a better anticipation of their child's behavior. Parents were also rated by independent raters of having higher levels of warmth towards their teen after being in the program. We feel these changes are important because we know that parental positivity, so staying positive, has been linked to improvements in parent's own well-being as well as the development of their child over time. So these are small differences, but we think that they're suggestive and important that the intervention may be beneficial in multiple ways for families. And so just to wrap up, and then we'll have time for questions in case anyone in interested in questions, I will show you our next step. 

So thankfully, I'm very excited to report that we do have funding from Autism Speaks to continue to study this intervention and look with a larger group of families. So based on the feedback from families in our first pilot study we've adapted and enhanced our curriculum, especially thinking about what we're doing with our teen social group and really tried to strengthen that aspect of the program based on specific suggestions from parents. And also for this study funded by Autism Speaks, we're going to give special attention to the adolescent's perspective. So in our past we were just talking to parents, which I think is obviously important, I'm a family researcher, but we know that teens probably have some opinions, and we would like to hear those too. So we're excited to be learning about the teens, their own goals for the transition. We know actually involving teens in transition planning is really important for outcomes. So we want to be doing that as part of the transitioning together program. And also collecting the teens' views and attitudes about being in this social group. So we're going to collect surveys from them every week, get their opinions, get their ideas about what would make a better social group, what do they think would help them in trying to make friends. So I'm really excited about that piece of the study. 

And currently we're recruiting families, so if anyone is interested in being in this program, we would be excited for you to join us, and we're looking for teens between 14 and 17 who spend at least 50% of the time in a regular education classroom. And we're hoping to be able to expand this program to a broader range of families as we move forward. I am really hopeful and excited that this could be helpful for a variety of families, not just those with 14- to 17-year-olds. But I'd love to hear ideas from families about what types of services you think would be beneficial, and again, we'll be, if you're interested in signing up or getting more information about the study, at the tables when you came in we'll have information you can sign up. And to close, obviously most importantly I want to thank all the families who have participated in our research and have helped inform how we're thinking about providing services to families in the future and the different collaborators and the different funding sources. So now I have time for questions if anyone has any questions or comments or ideas. [APPLAUSE]    And I'm going to give you a