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>> 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]