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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]