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gears and talk about a different >> Okay, I am going to switch
here at the Waisman Center, and I'm really excited to share
with you about a program we've
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
starting to get antsy, you'll in theknow where we are.ou're
First I'm going to talk a little
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.
to focus in on adolescence as an So I'll do that and then I want
course of the family. It's an important turning point,
and I have some new data to show
adulthood, and then I will move yoin and talk about ournd
Transitioning Together program, and finally wrap up with some
next steps and let you know what
So, first just as a general background, parents of children
with ASD often report higher
children both without a ledevelopmental disability butof
also more stress than parents of
developmental disabilities. So Down syndrome, fragile Xf
syndrome, CP, and undifferentiated developmental
delay, but that basically is a
don't have a specific cause or developmental delay where we
And importantly, this pattern of diagnosis.
find it across the life course. eleSo parents of very young we
children all the way through
they're reporting higher levels parof stress than otheren,
disabilities. And what I want to show you here
is from a study we did looking
of adolescents and adults on the at daily experiences of mothers
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
And what you can see, the light blue bars are moms of teens and
adults with ASD, and the
are moms of similarly aged brighter blue, darker blue bars
developmental disabilities. And you can see that moms of
young adults on the spectrum
stress in basically every domain were reporting higher levels of
they might have. we asked about types of stress
children with ASD were reporting So 25% of the time, moms of
So, you know, when you feel like arguments, avoided arguments.
worth it. fighting an[LAUGHTER]de it's not
That was happening
So maybe there are some parents here who know what I'm talking
about.
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
So by that we mean stress that's of network stress.
one or a friend or someone they happknow, and that's kind ofoved
spilling into their life too. So basically, everywhere we look
we find higher levels of daily
And sort of similarly, this is stress.
had experience of fatigue during showing, we asked moms if they
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.
and adults, and so we didn't So these are moms of teenagers
children what they're levels of even asstress might be.ounger
And I also want so show interference with work.
So about 20% of the time, so you
moms are reporting being can think about one day a week,
with their work. interrupted at their jobs or
is it because of your child? We didn't say, can you tell us
perhaps it might be related to But perhaps you can think about
adult on the spectrum. caring for their adolescent or
important impacts on both And physical health and has
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
anxiety or depression, also can influence your day to day mood,
so your feelings of happiness or
We also have a series of studies sadness on a day to day basis.
colleagues looking at cortisol by Marsha Seltzer and different
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
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
in -- where we looked at daily recently had a paper coming out
moms, and again this is the same physical health symptoms for
on their daily levels of stress. study where they were reporting
is the light blue bar, and the And we find that, again, autism
kids without disabilities. darker blue are the moms with
headaches, back aches, muscle Asoreness, joint pain and evenof
dizziness.
different problems. And if you think about 40% of
the time they're having some
and you can think about sort of sexpanding that over the course,
of life.
giving may have and the stress The physical toll that care
So, all that is to say I think may have on parents.
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
individuals on the spectrum and trareally thinking about howfor
adolescence may be a
be providing supports to the particularly important time to
Like I said, adolescence is an family.
A lot of things happen during imadolescence..
I don't know if you remember
can be kind of stressful. yoPeople with autism are no it
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.
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
social activities and fewer opportunities for involvement in
the community in different
Also, for adults with ASD have social activities.
compared to other groups. So, for instance, individuals
with Down syndrome. And this is concerning and
something we need to be thinking
Like I said, there are fewer about.
for social engagement and community engagement for adultss
on the spectrum after they leave
Meaningful activities and services may be really critical
for adult independence and being
and having a meaningful life. fulAnd so I want to show twoity
different papers that we're in
recently completed that really the process of working on, and
need more meaningful activities for adults on the spectrum.e
So this is going to be a lot of data, and I just want you to be
thinking about, as we're looking
mean in terms of needs for at the data, what this might
spectrum. And first I'm going to talke
about a recent paper by Julie Taylor and Marsha Seltzer that
shows changes in autism symptoms
exit, and then another paper before and after high school
looking at changes in daily that we aliving skills.orking on
So first, here we looked, this
Marsha Seltzer, we're able to ilook at autism symptoms asd
measured by the Autism
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.
and stay through age 22. Some will take advantage of IDA
may just drop out of school. Some individuals on the spectrum
here is they've exited the So really what we're meaning
receiving any services. And just to orientate you to the
colors, the blue line is for
disabilities, and the red line individuals without intellectual
an intellectual disability. So, as you can see, forh
everyone, while they are in high
their autism symptoms, so their scholevel of difficulty inces,
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
point in the nature of change. exit we see a pivot or a turning
are still going down. AnSo you can see that, but thees
speed of improvement slows
not seeing improvements as significantly so they really are
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
review currently with Matt data from a paper we have under
here at the Waisman Center, and Menard,Marsha Seltzer.postdoc
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
study, we're able to piece all and 50 at the start of the
10 years together to give us an idea of what might happen from
10 all the way up into the 60s
exciting, and it's a fun type of which I think is really
ever interested. statistical analysis if you're
are their daily living scores Whawhere a higher score meanseft
greater levels of independence
skills. And the highest score on the
measure is a 34.
high levels of independence, and So that would really indicate
measuring here have to do with these types of skills that we're
sandwich, managing your own daily finances, keeping track of
cash, those kinds of things,
to be able to be functioning things you really need to have
And as you can see, for individuals on the spectrum, and
again the red line are
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
Those each represent a different individual lines.
But what is concerning is by the person in their trajectory.
individuals without an end of the 20s, especially for
is a flattening of growth. intellectual disability, there
actually start to demonstrate a So they stodecline. gains and
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
to do. meaningful activities and things
is just to give you a little And what I'm going to show now
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
rate of gains of skills across they just have a slow, steady
And so here you can see them the life course.
that individuals with ASD are tgaining a lot of skills duringr
adolescence and early in
and then start to decline, and adulthood but seem to level off
pattern in individuals with Down we're not seeing that same
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
kind of thinking along these yet, but I want people to be
So just in summary, thinking lines.
adult years I think are really about adolescence and the early
lot of research now to show that important, and I think we have a
to the entire family as well as we nthe individual with ASD.orts
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
is probably going to fall onto money and those types of skills
And then we need to be providing the family.
course. You spend a lot of time as ane
adult, not quite as much time as
providing supports during the early childhood years but also
during adulthood. And, just in general, we know
there are fewer services, and so
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
So we received funding from the CTSA here at the University of
Wisconsin to develop and pilot
designed especially for families test an intervention program
So our first aim from that pilot of teenagers with ASD.
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
there's no need to create a that's neprogram.families,
So our first aim was to develop a curriculum, and we started off
by looking at different models
that might be useful. ofAnd so we decided upon thes
multi-family group
been used by McFarland and psychoeducation model that has
really beneficial and useful in ofamilies with other conditions
other than autism.
try this type of model in Anautism, and it needed to beuld
adapted a little because we know
heterogeneous. autism is unique and
this type of model really Semphasizes providing education
and information about the disability, really heavily
focused on providing knowledge
encourages the use of problem thasolving strategies.and
So we know from other studies,
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
So focusing on being problem your health.
solutions when stress arises. So that was another emphasis of
this type of model. And then also encouraging
positivity both for the parents,
Just really encouraging for tpositivity.amily.
So after deciding on that type
intervention, we selected content for the curriculum based
on a thorough literature review,
the Waisman Center because of Marsha Seltzer, there's been a
now 12-year study of adolescents
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
to include in terms of ideas for what might be valuable
families, in the intervention we information for parents and
We did three focus groups to conducted focus groups.
intervention. Participants were family members
of teens and young adults on the
professionals providing services spectrum as well as
one young adult on the spectrum to famparticipate as well.ly had
We centered our questions around
So is this information parents the content of the curriculum.
if we were to provide this would want to know about or not
to go about providing servinformation to families. way
So we asked a lot of different
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
the comments fell into three focus groups, and basically all
So topics that families wanted different categories of themes.
families, and ideas to make the to learprogram work.needs of
And so these were our three main
thank you to everyone who's ever themes, and I just have to say
it really does help us design participateprograms.arch because
So it was very useful to do the focus groups.
And basically a lot of ideas
groups that were really helpful were generatfor us.ng the focus
In terms of topics, families
on self and family care, future taplanning, any legal issues,ion
safety issues, also questions about dating, college, because
again we're thinking about
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
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,
useful information for me was that we really needed to have a
group for teens if we were going
So that was really good learning to have a group for parents.
Also we needed to have some snacks.
[LAUGHTER]
about and then, Alsoh, yeah, we need to feedking
people. And another one was have college
kids, especially if they could
fun for the teens. be pretty girls, that would be
So some really good ideas. [LAUGHTER]
families. So based our focus groups and
our literature review, we came
Transitioning Together. up And the program has fourall
different main components.
here. So the first thing we do after
families enroll in the program
where you meet one on one with is we have joining sessions
what they've been through. families to try to know sort of
odyssey for a lot of families Itrying to know, to finally getc
an ASD diagnosis, what was that like, a lot of changes in
doctors, changes in IEP.
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
and we want to partner with tfamilies to try to help them,
think through those goals.
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
positive coping strategies that thwe've seen in the literatureut
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
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
And we talk about autism in adulthood, so I'll share with
families the same types of
terms of the improvements during things I just showed you in
slows down after you leave high adolescence,school.en we know it
So we might talk about that in
during adulthood, provide terinformation on transitionike
planning, someone from DVR comes
well as problem solving, the to talk about employment, as
well-being, legal issues, so risk to parent health and
about guardianship and other bring in an attorney to talk
These were all topics that topics.
really felt they seemed to be duwhat families would bewe
interested in.
same time that parents are And then we also have at the
have a social group for teens. receiving this information, we
really different depending on And twho is in the group. look
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.
So our next step after Everybody likes Wii games.
do a feasibility study to see if developing the curriculum was to
would be interested in this would be something parents
So we had 10 families. participating in.
The teens themselves were Mbetween the ages of 15 and 18,
and we collected feasibility and
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
All families stayed with us in families.
And we actually did a reunion meeting, and all but one family
came back for the reunion.
had felt some connection and So we felt that families really
group. were glad and happy to be in the
parent that I think sort of And Inicely summarizes theom one
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.
sharing. We're absorbing and we're
great stress reliever. Sometimes just doing that is a
me to hear because, again, we're And that was very exciting for
and really we're hoping that concerned about parent stress,
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
suggestion or hint that this to see if there might be any
ways than just parents feeling would be beneficial in other
And so from before to after the intervention, we did see some
significant changes.
parents reported an increase in Sotheir 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
behavior. anParents were also rated bys
independent raters of having
their teen after being in the higher levelprogram.mth towards
We feel these changes are important because we know that
parental positivity, so staying positive, has been linked to
improvements in parent's own
development of their child over well-beingtime.ell as the
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
case anyone in interested in we'll have time for questions in
next step. questions, I will show you our
to report that we do have Sfunding from Autism Speaks tod
continue to study this
larger group of families. So based on the feedback from
families in our first pilot study we've adapted and enhanced
our curriculum, especially
with our teen social group and thinking about what we're doing
aspect of the program based on really tried to strengthen that
parents. specific suggestions from
by Autism Speaks, we're going to And also for this study funded
adolescent's perspective. gSo in our past we were juste
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
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
So we want to be doing that as important for outcomes.
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
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
looking for teens between 14 and you to join us, and we're
time in a regular education 17 who spenclassroom. 50% of the
And we're hoping to be able to
range of families as we move expand this program to a broader
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
information you can sign up. when you came in we'll have
importantly I want to thank all Andthe families who havemost
participated in our research and
thinking about providing have helped inform how we're
future and the different services to families in the
funding sources. collaborators and the different
if anyone has any questions or So now I have time for questions
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