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]