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cc

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>> So, Dr. Leann Smith has

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developed a wonderful

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intervention for teens on the

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autism spectrum and their

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families, and it's called

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Transitioning Together.

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It was developed here at the

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Waisman Center based on research

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we've been conducting, and it

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has grown over the years to

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become an evidence-based

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treatment.

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In other words, we've been able

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to compare participation in

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Transitioning Together, as

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you'll hear, with a control

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group and see the added benefit

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of Transitioning Together.

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And what's really remarkable

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about Leann is that she has

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developed this intervention,

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this program for families and

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their teens from the start,

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tested it out, involved families

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in the development of it, and

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gotten feedback from families,

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modified the intervention, and

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perfected it.

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So now we're about ready to go

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to incorporate that into the

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clinical services provided by

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the Waisman Center.

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So it's a real privilege to

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introduce Leann Smith.

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[APPLAUSE]

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>> Hi.

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Hello, and thank you so much,

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Marsha, for your kind words, and

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I'm really excited to follow

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Maria's talk because she really

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set the stage for me already in

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terms of why we want to think

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about providing supports not

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just to individuals on the

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autism spectrum but to the

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entire family system.

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And we can think about behavior,

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sleep, what's happening in

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school, and all these reasons.

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It takes an entire team of

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partnering with families and

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clinicians.

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So, thank you so much for that.

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What I'm going to talk about

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today is Transitioning Together,

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which, as Marsha said, is the

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program that we developed here

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at the Waisman Center based on

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research that's been happening

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for over a decade here as well

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as with input from families and

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other stakeholders about what

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would be most valuable.

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And so first I want to talk a

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little bit about why families

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need support.

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So, just by a show of hands it

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would help me know who the

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grandparents are in the room.

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If you have a child or a

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grandchild with a disability.

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Okay, great.

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So, hopefully this is going to

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be relevant to you and maybe

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will ring true in your

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experiences of seeing your

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children raising their children.

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We know that having a child on

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the autism spectrum can be

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highly stressful for their

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parents as well as other members

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of the family.

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And it's important to keep in

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mind that stress actually has

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long-term effects on parental

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health and well being.

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So, not just in the moment when

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you're feeling nervous or

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anxious, but there can be

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cascading effects on both your

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psychological well being and

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health.

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So we see higher levels of

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depression and anxiety for

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parents, lower levels of

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positive affect, and higher

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levels of negative affect.

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We see dysregulated patterns of

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cortisol in parents, mothers of

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adolescents and adults with

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autism.

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And cortisol is a stress hormone

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in your body that, if

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dysregulated, can lead to

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different diseases.

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And we also see an elevated

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level of health problems, health

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symptoms.

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So this would be symptoms of

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fatigue but also headaches,

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backaches, muscle aches, GI

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problems.

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There are a lot of different

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types of health symptoms and

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health problems that we have

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observed in parents of children

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with ASD.

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And I think this goes nicely

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with what Maria was talking

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about, about the different

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behaviors that we observe in

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children with ASD and how those

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can be stressful for parents and

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the caregiving burden that can

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be associated with children with

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those challenging behaviors.

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So this is a slide from a study

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we did a few years ago where we

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talked to mothers of adolescents

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and adults on the autism

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spectrum, and we talked to them

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every day for eight days in a

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row, and we asked them what had

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happened during the day.

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And specifically we probed for

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different types of stress that

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parents might have experienced.

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And this is important, these are

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parents of adolescents and

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adults with ASD.

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So this isn't even the time when

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they're young and going through

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the diagnostic process.

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We know that can be stressful.

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This is when children are older,

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and we actually see elevated

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levels of stress in every

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category that we asked.

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So, the light blue are mothers

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of adolescents and adults with

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autism, and the dark blue bars

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represent the comparison group

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of mothers who had children

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without any developmental

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disability.

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And on the vertical axis there

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is the percent of days that

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mothers experience this type of

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stress.

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You can see elevated levels of

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arguments, elevated levels of

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avoided arguments, and an

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avoided argument is when you

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know you could get into a fight

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and you could pick the fight and

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you just choose it's not even

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worth it to go there.

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That's what avoided arguments

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mean, so you may understand what

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that feels like.

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Also higher levels of work

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stress, which might be a little

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surprising.

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If you're at work, you're not

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with your child, why would work

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be more stressful for you?

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Well, we actually know and

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that's shown on this slide that

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you're more likely to be

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interrupted when you're at work

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if you have a child on the

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autism spectrum you're getting

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phone calls, you're having to

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leave work early, which can make

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work feel more stressful.

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Not surprisingly, over twice as

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often parents were experiencing

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stress at home at well as

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network stress.

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And I think this is particularly

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important for this group of

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families to know about.

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Network stress is when something

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stressful is happening to

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someone you love.

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So this could be stress your

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child is experiencing, your

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extended family.

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So mothers were reported higher

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levels of network stress when

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their child was on the autism

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spectrum.

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And, again, worth knowing that

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families are experiencing this

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stress, and I'm going to make an

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argument that we need to be

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providing support to families

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not just during the early period

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when the child is being

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diagnosed with a disability or

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in the early years when they're

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starting school and the families

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are trying to navigate IEPs, but

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we also need to be providing

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support to families during the

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adolescent period.

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I don't know if you can think

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back and remember when you were

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a teenager, but a lot of things

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actually happen during

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adolescence.

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A lot of transitions and changes

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in terms of your relationship

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with your family members, in

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terms of what you are doing with

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you peers is really different,

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and even on a day to day level,

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if you are a teenager on the

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autism spectrum, you're in a

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high school setting, you may be

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changing classes very

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frequently.

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You may have different peer

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groups at different times of the

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day, which can be confusing and

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challenging for someone on the

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spectrum.

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And so not only are you going

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through these major life changes

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during adolescence, but you're

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also going through a day to day,

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a higher number of transitions.

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And we know that for individuals

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on the autism spectrum

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negotiating transition and

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change is really hard.

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Also, we know that during

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adolescence and that transition

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to adulthood, after teenagers

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leave high school there's a

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significant loss of services.

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There's no longer entitlement to

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public education services like

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you have when you're in school.

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Some families even talk about

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this as falling off a cliff.

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The shift from having supports

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to not having supports can be

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very challenging.

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Also during adolescence is a

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time of increased risk for

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difficulties in terms of

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symptoms and behavior problems.

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We know that the adolescent

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years for anyone is when often

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mental health problems can begin

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to emerge.

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And so people on the autism

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spectrum, that's the same for

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them as well.

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And so, in general, adolescence

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is a time for families that can

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be more stressful, actually,

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than other periods in the course

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of a family.

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This slide is a little, there's

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a lot going on, but I think it's

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really important for everyone to

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understand.

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This is an important paper that

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was done by a colleague in mine

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and Marsha Mailick, and, as you

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can see, the vertical line, the

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black line, represents the point

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in time that an adolescent with

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ASD exited high school.

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And so the negatives reflect the

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time when the individuals were

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in high school, and then the

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00:09:07,666 --> 00:09:09,133
one, two, three, fours are the

292
00:09:09,133 --> 00:09:10,633
four years following high school

293
00:09:10,633 --> 00:09:12,133
exit.

294
00:09:12,133 --> 00:09:13,766
And there are two different

295
00:09:13,766 --> 00:09:15,300
colored lines.

296
00:09:15,300 --> 00:09:16,900
The red line represents

297
00:09:16,900 --> 00:09:18,500
individuals with an autism

298
00:09:18,500 --> 00:09:20,133
spectrum disorder and an

299
00:09:20,133 --> 00:09:21,866
intellectual disability, and the

300
00:09:21,866 --> 00:09:23,700
blue line represents individuals

301
00:09:23,700 --> 00:09:25,566
with ASD without an additional

302
00:09:25,566 --> 00:09:27,733
intellectual disability.

303
00:09:27,733 --> 00:09:29,633
So the blue line are individuals

304
00:09:29,633 --> 00:09:31,233
with intellectual ability in a

305
00:09:31,233 --> 00:09:34,200
normal range.

306
00:09:34,200 --> 00:09:36,066
And what you can see that when

307
00:09:36,066 --> 00:09:39,333
students on the spectrum are in

308
00:09:39,333 --> 00:09:42,900
high school, so the numbers to

309
00:09:42,900 --> 00:09:46,166
your left, their autism symptoms

310
00:09:46,166 --> 00:09:47,833
are going down, which means

311
00:09:47,833 --> 00:09:49,700
they're improving in terms of

312
00:09:49,700 --> 00:09:51,900
their social communication and

313
00:09:51,900 --> 00:09:54,233
their repetitive behaviors or

314
00:09:54,233 --> 00:09:55,733
their rigidity associated with

315
00:09:55,733 --> 00:09:57,100
autism.

316
00:09:57,100 --> 00:09:58,633
It's going down so it's getting

317
00:09:58,633 --> 00:10:00,133
better when they're in high

318
00:10:00,133 --> 00:10:01,466
school, which is great.

319
00:10:01,466 --> 00:10:02,966
And this is actually a trend we

320
00:10:02,966 --> 00:10:04,433
see in general that autism

321
00:10:04,433 --> 00:10:06,333
symptoms generally improve with

322
00:10:06,333 --> 00:10:09,000
time and with maturation, which

323
00:10:09,000 --> 00:10:11,133
is not surprising.

324
00:10:11,133 --> 00:10:13,000
But what is very concerning to

325
00:10:13,000 --> 00:10:15,566
me is that when individuals

326
00:10:15,566 --> 00:10:17,566
leave high school, their rate of

327
00:10:17,566 --> 00:10:19,266
improvement significantly slows

328
00:10:19,266 --> 00:10:21,400
down.

329
00:10:21,400 --> 00:10:23,066
So maybe they're making gains in

330
00:10:23,066 --> 00:10:25,166
social skills or making gains in

331
00:10:25,166 --> 00:10:26,633
their behavior, but when they

332
00:10:26,633 --> 00:10:28,333
leave high school the rate of

333
00:10:28,333 --> 00:10:30,533
improvement slows down.

334
00:10:30,533 --> 00:10:32,000
And this really has to do with

335
00:10:32,000 --> 00:10:33,600
leaving high school more so than

336
00:10:33,600 --> 00:10:36,533
just getting older.

337
00:10:36,533 --> 00:10:39,233
But we could think about why

338
00:10:39,233 --> 00:10:41,533
might that be the case that as

339
00:10:41,533 --> 00:10:44,500
they leave high school their

340
00:10:44,500 --> 00:10:47,166
improvement slows down.

341
00:10:47,166 --> 00:10:49,100
Well, we can think about it has

342
00:10:49,100 --> 00:10:50,766
to do with not having access to

343
00:10:50,766 --> 00:10:52,133
services, and maybe not having

344
00:10:52,133 --> 00:10:54,266
as many meaningful activities or

345
00:10:54,266 --> 00:10:57,333
places to go and things to do.

346
00:10:57,333 --> 00:11:00,666
This really points to the need

347
00:11:00,666 --> 00:11:03,633
for community activities and

348
00:11:03,633 --> 00:11:05,500
supports for individuals on the

349
00:11:05,500 --> 00:11:07,233
spectrum, both during

350
00:11:07,233 --> 00:11:09,133
adolescence and during the time

351
00:11:09,133 --> 00:11:11,133
when they leave high school.

352
00:11:11,133 --> 00:11:12,966
We see during adulthood, again,

353
00:11:12,966 --> 00:11:14,466
like I said, there are fewer

354
00:11:14,466 --> 00:11:16,066
services and also just fewer

355
00:11:16,066 --> 00:11:17,833
social activities.

356
00:11:17,833 --> 00:11:19,666
When you're in high school, you

357
00:11:19,666 --> 00:11:21,200
have peers around you every day

358
00:11:21,200 --> 00:11:22,166
because you're in class.

359
00:11:22,166 --> 00:11:23,300
That's not necessarily the case

360
00:11:23,300 --> 00:11:24,666
once you exit.

361
00:11:24,666 --> 00:11:26,000
So, again, this is why we really

362
00:11:26,000 --> 00:11:27,766
want to be preparing individuals

363
00:11:27,766 --> 00:11:29,500
on the spectrum and their

364
00:11:29,500 --> 00:11:31,033
families for this transition out

365
00:11:31,033 --> 00:11:32,900
of high school.

366
00:11:32,900 --> 00:11:35,000
And just to make this a little

367
00:11:35,000 --> 00:11:37,200
more personal and bring the data

368
00:11:37,200 --> 00:11:39,700
to life a little more, we, in

369
00:11:39,700 --> 00:11:42,066
the process to developing the

370
00:11:42,066 --> 00:11:43,766
Transitioning Together

371
00:11:43,766 --> 00:11:45,466
intervention, conducted a lot of

372
00:11:45,466 --> 00:11:47,166
focus groups and talked to

373
00:11:47,166 --> 00:11:48,600
families to find out what types

374
00:11:48,600 --> 00:11:50,266
of services or supports they

375
00:11:50,266 --> 00:11:51,600
might need.

376
00:11:51,600 --> 00:11:53,266
And one of the overwhelming

377
00:11:53,266 --> 00:11:55,400
themes in talking to families

378
00:11:55,400 --> 00:11:57,866
was the need for community

379
00:11:57,866 --> 00:11:59,633
activities and social

380
00:11:59,633 --> 00:12:01,533
connections for their children.

381
00:12:01,533 --> 00:12:03,500
One parent said, "I want to see

382
00:12:03,500 --> 00:12:05,300
community activities for young

383
00:12:05,300 --> 00:12:07,000
adults."

384
00:12:07,000 --> 00:12:08,466
Another said, "We badly need

385
00:12:08,466 --> 00:12:10,200
community supports.

386
00:12:10,200 --> 00:12:12,100
My son has no friends."

387
00:12:12,100 --> 00:12:14,133
And finally, "Think about all

388
00:12:14,133 --> 00:12:15,933
the times the child is not

389
00:12:15,933 --> 00:12:17,866
included in social events and

390
00:12:17,866 --> 00:12:19,600
the parents have to avoid

391
00:12:19,600 --> 00:12:21,500
neighbors, churches, and have

392
00:12:21,500 --> 00:12:23,000
been blacklisted from the

393
00:12:23,000 --> 00:12:24,333
community."

394
00:12:24,333 --> 00:12:27,033
And these quotes really show

395
00:12:27,033 --> 00:12:29,733
what it feels like to parents

396
00:12:29,733 --> 00:12:31,666
and the stress they feel trying

397
00:12:31,666 --> 00:12:33,833
to provide opportunities for

398
00:12:33,833 --> 00:12:35,700
their children and the reason

399
00:12:35,700 --> 00:12:37,533
that we need to be providing

400
00:12:37,533 --> 00:12:40,066
supports across the life course.

401
00:12:40,066 --> 00:12:41,866
So, during adolescence and

402
00:12:41,866 --> 00:12:44,133
beyond.

403
00:12:44,133 --> 00:12:46,133
So, again, we see there aren't

404
00:12:46,133 --> 00:12:47,900
as many supports, especially as

405
00:12:47,900 --> 00:12:50,733
families usher their children

406
00:12:50,733 --> 00:12:53,800
into adulthood even though it's

407
00:12:53,800 --> 00:12:55,633
a particularly stressful period.

408
00:12:55,633 --> 00:12:57,133
So there's a mismatch between

409
00:12:57,133 --> 00:12:58,933
the services we are providing as

410
00:12:58,933 --> 00:13:00,533
professionals and what the needs

411
00:13:00,533 --> 00:13:02,300
of families happen to be.

412
00:13:02,300 --> 00:13:03,800
So we decided here at the

413
00:13:03,800 --> 00:13:05,233
Waisman Center to develop

414
00:13:05,233 --> 00:13:06,900
Transitioning Together in order

415
00:13:06,900 --> 00:13:08,300
to address this gap in our

416
00:13:08,300 --> 00:13:10,766
evidence-based services.

417
00:13:10,766 --> 00:13:13,966
So the Transitioning Together

418
00:13:13,966 --> 00:13:16,400
program, it seeks to provide

419
00:13:16,400 --> 00:13:18,233
education and support for

420
00:13:18,233 --> 00:13:20,300
parents as well as to provide

421
00:13:20,300 --> 00:13:22,200
social opportunities for social

422
00:13:22,200 --> 00:13:23,766
interaction and learning for

423
00:13:23,766 --> 00:13:25,333
adolescents on the autism

424
00:13:25,333 --> 00:13:26,733
spectrum.

425
00:13:26,733 --> 00:13:29,000
And the overarching sort of

426
00:13:29,000 --> 00:13:30,633
theme of being in Transitioning

427
00:13:30,633 --> 00:13:32,200
Together and the program is

428
00:13:32,200 --> 00:13:33,633
really to emphasize positivity

429
00:13:33,633 --> 00:13:35,433
and problem solving.

430
00:13:35,433 --> 00:13:37,233
We know from our past work that

431
00:13:37,233 --> 00:13:39,566
using problem focused coping

432
00:13:39,566 --> 00:13:41,000
strategies and maintaining

433
00:13:41,000 --> 00:13:42,933
positivity within the family

434
00:13:42,933 --> 00:13:45,000
system is really important.

435
00:13:45,000 --> 00:13:46,700
So that's one of the main themes

436
00:13:46,700 --> 00:13:48,600
and goals of the Transitioning

437
00:13:48,600 --> 00:13:50,600
Together program.

438
00:13:50,600 --> 00:13:55,233
The program is multifaceted, so

439
00:13:55,233 --> 00:13:57,333
it involves individual sessions

440
00:13:57,333 --> 00:13:59,200
for families as well as

441
00:13:59,200 --> 00:14:02,033
multi-family group sessions for

442
00:14:02,033 --> 00:14:03,600
parents.

443
00:14:03,600 --> 00:14:05,100
So that means multiple parents

444
00:14:05,100 --> 00:14:06,800
come together into one group to

445
00:14:06,800 --> 00:14:08,666
be able to dialog and learn

446
00:14:08,666 --> 00:14:10,233
together.

447
00:14:10,233 --> 00:14:11,800
There are also eight social

448
00:14:11,800 --> 00:14:13,666
group sessions for teens.

449
00:14:13,666 --> 00:14:16,400
And we provide ongoing resources

450
00:14:16,400 --> 00:14:18,000
and referrals.

451
00:14:18,000 --> 00:14:20,000
So obviously there are a lot of

452
00:14:20,000 --> 00:14:21,866
things that are happening during

453
00:14:21,866 --> 00:14:23,200
adolescence, and you're not

454
00:14:23,200 --> 00:14:24,533
going to have time to discuss

455
00:14:24,533 --> 00:14:27,666
all concerns or address them,

456
00:14:27,666 --> 00:14:29,400
and that's why we would be able

457
00:14:29,400 --> 00:14:31,033
to provide resources to families

458
00:14:31,033 --> 00:14:33,333
that maybe aren't touched

459
00:14:33,333 --> 00:14:35,300
exactly in the curriculum for

460
00:14:35,300 --> 00:14:37,033
Transitioning Together.

461
00:14:37,033 --> 00:14:40,200
And here is a list of the

462
00:14:40,200 --> 00:14:41,800
different topics that are

463
00:14:41,800 --> 00:14:43,233
covered during the eight group

464
00:14:43,233 --> 00:14:44,566
sessions for parents.

465
00:14:44,566 --> 00:14:46,300
We talk about autism in

466
00:14:46,300 --> 00:14:48,733
adulthood, transitioning

467
00:14:48,733 --> 00:14:50,433
planning, and transitioning

468
00:14:50,433 --> 00:14:52,266
planning involves thinking about

469
00:14:52,266 --> 00:14:54,266
employment as well as continuing

470
00:14:54,266 --> 00:14:55,733
education and also thinking

471
00:14:55,733 --> 00:14:57,366
about maybe residential

472
00:14:57,366 --> 00:15:00,100
transition.

473
00:15:00,100 --> 00:15:02,233
Is the child wanting to live on

474
00:15:02,233 --> 00:15:03,800
their own?

475
00:15:03,800 --> 00:15:05,366
Are they wanting to continue to

476
00:15:05,366 --> 00:15:06,766
live with the family?

477
00:15:06,766 --> 00:15:08,100
So we talk about those types of

478
00:15:08,100 --> 00:15:09,366
transitions.

479
00:15:09,366 --> 00:15:10,800
Family topics would be thinking

480
00:15:10,800 --> 00:15:13,366
about the impact of having a

481
00:15:13,366 --> 00:15:15,166
child on the spectrum in the

482
00:15:15,166 --> 00:15:16,733
home.

483
00:15:16,733 --> 00:15:18,233
So the impact on the siblings,

484
00:15:18,233 --> 00:15:19,766
but also what are things that

485
00:15:19,766 --> 00:15:21,300
families can be doing in their

486
00:15:21,300 --> 00:15:22,766
home and in the family

487
00:15:22,766 --> 00:15:24,166
environment that's going to be

488
00:15:24,166 --> 00:15:26,133
most supportive for a person on

489
00:15:26,133 --> 00:15:28,533
the spectrum.

490
00:15:28,533 --> 00:15:30,566
We discuss problem solving,

491
00:15:30,566 --> 00:15:32,300
which is really important.

492
00:15:32,300 --> 00:15:33,833
Thinking about, often in a

493
00:15:33,833 --> 00:15:36,066
support group, you get a bunch

494
00:15:36,066 --> 00:15:38,233
of people together and you start

495
00:15:38,233 --> 00:15:40,533
to discuss all the things that

496
00:15:40,533 --> 00:15:42,700
are terrible about you life and

497
00:15:42,700 --> 00:15:44,766
how stressed you are and sort of

498
00:15:44,766 --> 00:15:47,133
venting those negative emotions

499
00:15:47,133 --> 00:15:48,700
in the moment Maybe you get it

500
00:15:48,700 --> 00:15:50,166
off your chest and you feel

501
00:15:50,166 --> 00:15:51,700
better.

502
00:15:51,700 --> 00:15:53,100
But we actually know from

503
00:15:53,100 --> 00:15:55,100
research that staying in that

504
00:15:55,100 --> 00:15:57,366
negativity and that venting of

505
00:15:57,366 --> 00:15:59,100
negative emotions or denying the

506
00:15:59,100 --> 00:16:00,833
problem and not looking at it

507
00:16:00,833 --> 00:16:04,300
and facing it actually is not

508
00:16:04,300 --> 00:16:07,133
good for psychological

509
00:16:07,133 --> 00:16:08,900
well being in the long run.

510
00:16:08,900 --> 00:16:10,600
So what is valuable is to think

511
00:16:10,600 --> 00:16:13,433
about how can we define a

512
00:16:13,433 --> 00:16:15,366
problem, figure out sort of what

513
00:16:15,366 --> 00:16:17,466
might be contributing, and then

514
00:16:17,466 --> 00:16:19,233
make a plan for how we could

515
00:16:19,233 --> 00:16:21,700
find a workable solution.

516
00:16:21,700 --> 00:16:23,500
And so when you bring a lot of

517
00:16:23,500 --> 00:16:24,966
families together, they all have

518
00:16:24,966 --> 00:16:26,500
expertise in having a child with

519
00:16:26,500 --> 00:16:27,966
ASD, and so we're able to

520
00:16:27,966 --> 00:16:29,433
capitalize on their ideas in a

521
00:16:29,433 --> 00:16:31,266
problem solving session with

522
00:16:31,266 --> 00:16:33,433
families.

523
00:16:33,433 --> 00:16:34,966
We also talk about risks to

524
00:16:34,966 --> 00:16:36,333
adult independence and ways to

525
00:16:36,333 --> 00:16:38,033
address those risks or barriers

526
00:16:38,033 --> 00:16:39,366
to being independent.

527
00:16:39,366 --> 00:16:40,800
Community involvement.

528
00:16:40,800 --> 00:16:42,900
Risks to parents own health and

529
00:16:42,900 --> 00:16:44,433
well being.

530
00:16:44,433 --> 00:16:45,966
Again, just like I presented

531
00:16:45,966 --> 00:16:47,666
earlier, we see that stress is

532
00:16:47,666 --> 00:16:50,366
high, and stress can have sort

533
00:16:50,366 --> 00:16:54,533
of cascading effects on health.

534
00:16:54,533 --> 00:16:56,300
And we also discuss legal

535
00:16:56,300 --> 00:16:58,133
issues, guardianship, different

536
00:16:58,133 --> 00:17:00,533
powers of attorney, special

537
00:17:00,533 --> 00:17:02,600
needs trusts, different topics

538
00:17:02,600 --> 00:17:05,600
that maybe families haven't

539
00:17:05,600 --> 00:17:07,266
started thinking about in terms

540
00:17:07,266 --> 00:17:08,833
of long range planning that are

541
00:17:08,833 --> 00:17:10,300
important to think about before

542
00:17:10,300 --> 00:17:12,600
children turn 18.

543
00:17:12,600 --> 00:17:14,266
And, again, like I said, we have

544
00:17:14,266 --> 00:17:15,833
a social group for teens on the

545
00:17:15,833 --> 00:17:17,766
spectrum, and I completely give

546
00:17:17,766 --> 00:17:19,400
credit to families who've

547
00:17:19,400 --> 00:17:21,466
participated in our focus groups

548
00:17:21,466 --> 00:17:22,933
for even having a teen social

549
00:17:22,933 --> 00:17:24,333
group.

550
00:17:24,333 --> 00:17:26,200
That was what parents brought up

551
00:17:26,200 --> 00:17:27,666
to us, and so we responded.

552
00:17:27,666 --> 00:17:29,766
For our social group, we do a

553
00:17:29,766 --> 00:17:31,833
lot of fun activities.

554
00:17:31,833 --> 00:17:33,466
There's a lot of eating, a lot

555
00:17:33,466 --> 00:17:35,900
of games, role plays and skits

556
00:17:35,900 --> 00:17:38,233
to help practice what to do in

557
00:17:38,233 --> 00:17:39,700
social situations.

558
00:17:39,700 --> 00:17:42,166
Teens talk about sharing their

559
00:17:42,166 --> 00:17:43,733
interests, setting their own

560
00:17:43,733 --> 00:17:45,200
goals.

561
00:17:45,200 --> 00:17:46,666
It's really important for

562
00:17:46,666 --> 00:17:48,166
students with any kind of

563
00:17:48,166 --> 00:17:50,000
disability to start to have that

564
00:17:50,000 --> 00:17:51,600
sense of self-determination and

565
00:17:51,600 --> 00:17:53,233
advocacy for themselves.

566
00:17:53,233 --> 00:17:54,833
So that's why we talk about them

567
00:17:54,833 --> 00:17:56,266
thinking about their own

568
00:17:56,266 --> 00:17:57,566
futures.

569
00:17:57,566 --> 00:17:59,266
We also help the teens learn

570
00:17:59,266 --> 00:18:00,866
problem solving themselves,

571
00:18:00,866 --> 00:18:02,233
especially social problem

572
00:18:02,233 --> 00:18:03,566
solving.

573
00:18:03,566 --> 00:18:05,033
Kids on the spectrum, it can be

574
00:18:05,033 --> 00:18:07,000
hard for them when they maybe

575
00:18:07,000 --> 00:18:09,000
are being bullied or they sort

576
00:18:09,000 --> 00:18:10,466
of crash and burn in a social

577
00:18:10,466 --> 00:18:11,733
situation.

578
00:18:11,733 --> 00:18:13,133
They often don't know why.

579
00:18:13,133 --> 00:18:14,433
So they may realize that they're

580
00:18:14,433 --> 00:18:15,766
having social difficulty and can

581
00:18:15,766 --> 00:18:17,533
even have anxiety or feeling

582
00:18:17,533 --> 00:18:19,800
sort of negatively about

583
00:18:19,800 --> 00:18:21,466
themselves, but they don't know

584
00:18:21,466 --> 00:18:23,033
why they're having this social

585
00:18:23,033 --> 00:18:24,400
difficulty, and so we train them

586
00:18:24,400 --> 00:18:25,933
in doing some social problem

587
00:18:25,933 --> 00:18:27,600
solving as well as social

588
00:18:27,600 --> 00:18:29,000
planning.

589
00:18:29,000 --> 00:18:30,300
So, setting yourself up for

590
00:18:30,300 --> 00:18:32,166
success socially.

591
00:18:32,166 --> 00:18:33,566
And the teen group is tons of

592
00:18:33,566 --> 00:18:35,100
fun, by the way.

593
00:18:35,100 --> 00:18:37,466
So, like Marsha said, we've been

594
00:18:37,466 --> 00:18:39,100
doing work around this program

595
00:18:39,100 --> 00:18:40,966
for a while.

596
00:18:40,966 --> 00:18:43,633
Our first study was funded

597
00:18:43,633 --> 00:18:45,433
through the CTSA program ICTR

598
00:18:45,433 --> 00:18:47,233
here at UW Madison with 10

599
00:18:47,233 --> 00:18:49,033
families.

600
00:18:49,033 --> 00:18:51,500
From pre to post we saw

601
00:18:51,500 --> 00:18:53,100
differences an improvements in

602
00:18:53,100 --> 00:18:54,533
parent's understanding of their

603
00:18:54,533 --> 00:18:56,200
child's disability,

604
00:18:56,200 --> 00:18:57,900
understanding the service

605
00:18:57,900 --> 00:18:59,400
system, so, again, increasing

606
00:18:59,400 --> 00:19:00,966
parent's knowledge about the

607
00:19:00,966 --> 00:19:02,400
transition.

608
00:19:02,400 --> 00:19:03,800
Parents also reported positive

609
00:19:03,800 --> 00:19:05,066
changes in their attitudes about

610
00:19:05,066 --> 00:19:06,300
their teens.

611
00:19:06,300 --> 00:19:07,600
So, thinking about maybe

612
00:19:07,600 --> 00:19:09,233
behavior differently and in a

613
00:19:09,233 --> 00:19:11,366
more positive way.

614
00:19:11,366 --> 00:19:13,033
And also parents were rated as

615
00:19:13,033 --> 00:19:14,433
having higher levels of warmth

616
00:19:14,433 --> 00:19:16,133
towards their teen.

617
00:19:16,133 --> 00:19:17,633
Again, having that sense of

618
00:19:17,633 --> 00:19:20,800
warmth and safety and

619
00:19:20,800 --> 00:19:22,900
connectedness within the home is

620
00:19:22,900 --> 00:19:24,433
really important for all people

621
00:19:24,433 --> 00:19:26,033
and all children.

622
00:19:26,033 --> 00:19:27,866
So we were excited to see these

623
00:19:27,866 --> 00:19:29,300
early findings in this first

624
00:19:29,300 --> 00:19:30,900
study.

625
00:19:30,900 --> 00:19:34,100
We also are working on finishing

626
00:19:34,100 --> 00:19:36,133
up a study that's funded by

627
00:19:36,133 --> 00:19:37,600
Autism Speaks.

628
00:19:37,600 --> 00:19:39,300
And, again, Autism Speaks are

629
00:19:39,300 --> 00:19:40,700
the group that also has those

630
00:19:40,700 --> 00:19:42,400
nice tool kits that Maria was

631
00:19:42,400 --> 00:19:43,866
talking about, and they fund

632
00:19:43,866 --> 00:19:45,400
research studies too.

633
00:19:45,400 --> 00:19:46,933
And this particular study,

634
00:19:46,933 --> 00:19:49,300
Transitioning Together is

635
00:19:49,300 --> 00:19:51,566
designed where it can be sort of

636
00:19:51,566 --> 00:19:53,633
applicable to the whole autism

637
00:19:53,633 --> 00:19:55,100
spectrum, but for this

638
00:19:55,100 --> 00:19:56,566
particular study we were

639
00:19:56,566 --> 00:19:58,366
focusing on teens with "high

640
00:19:58,366 --> 00:20:00,600
functioning autism."

641
00:20:00,600 --> 00:20:02,733
And it's a randomized control

642
00:20:02,733 --> 00:20:05,066
design, so a randomized study

643
00:20:05,066 --> 00:20:08,933
which is a good type of research

644
00:20:08,933 --> 00:20:11,500
method for this type of work.

645
00:20:11,500 --> 00:20:14,633
And preliminarily, we have

646
00:20:14,633 --> 00:20:16,800
preliminary data on 30 families

647
00:20:16,800 --> 00:20:19,266
so far of teenagers, and we've

648
00:20:19,266 --> 00:20:22,066
seen improvements in adolescent

649
00:20:22,066 --> 00:20:23,700
social engagement as well as

650
00:20:23,700 --> 00:20:26,300
improvement in parental

651
00:20:26,300 --> 00:20:28,100
attitudes, the family climate,

652
00:20:28,100 --> 00:20:29,633
and the family sense of

653
00:20:29,633 --> 00:20:30,966
empowerment.

654
00:20:30,966 --> 00:20:32,566
So they have a sense of being

655
00:20:32,566 --> 00:20:34,033
able to advocate for their

656
00:20:34,033 --> 00:20:35,266
children's needs.

657
00:20:35,266 --> 00:20:37,800
And we find these data to be

658
00:20:37,800 --> 00:20:39,566
very promising and exciting.

659
00:20:39,566 --> 00:20:41,200
And, again, it's ongoing so

660
00:20:41,200 --> 00:20:42,833
we're still recruiting for this

661
00:20:42,833 --> 00:20:44,166
study.

662
00:20:44,166 --> 00:20:45,666
If anyone has teenagers on the

663
00:20:45,666 --> 00:20:47,266
spectrum, you can send them our

664
00:20:47,266 --> 00:20:48,666
way.

665
00:20:48,666 --> 00:20:50,233
And I just wanted to share some

666
00:20:50,233 --> 00:20:51,533
quotes.

667
00:20:51,533 --> 00:20:52,833
I know I started earlier giving

668
00:20:52,833 --> 00:20:54,233
some quotes when we did focus

669
00:20:54,233 --> 00:20:55,833
groups about sort of the sense

670
00:20:55,833 --> 00:20:57,633
of isolation families felt.

671
00:20:57,633 --> 00:20:58,800
And so these are quotes from

672
00:20:58,800 --> 00:21:00,000
families who have been through

673
00:21:00,000 --> 00:21:01,366
the Transitioning Together

674
00:21:01,366 --> 00:21:02,966
program and their thoughts.

675
00:21:02,966 --> 00:21:04,700
So these are quotes first from

676
00:21:04,700 --> 00:21:06,266
parents.

677
00:21:06,266 --> 00:21:07,533
"The first time in a really long

678
00:21:07,533 --> 00:21:09,800
time that especially with my son

679
00:21:09,800 --> 00:21:11,533
I felt like we've had supports

680
00:21:11,533 --> 00:21:13,433
to turn to."

681
00:21:13,433 --> 00:21:15,333
Another parent said, "It gave me

682
00:21:15,333 --> 00:21:17,066
a wealth of information about

683
00:21:17,066 --> 00:21:18,800
what should be going on at

684
00:21:18,800 --> 00:21:21,600
school as far as transitioning."

685
00:21:21,600 --> 00:21:24,200
And as a caveat, a lot of times

686
00:21:24,200 --> 00:21:25,966
when parents have stress, that

687
00:21:25,966 --> 00:21:27,733
connection with the school and

688
00:21:27,733 --> 00:21:29,300
feeling supported by schools can

689
00:21:29,300 --> 00:21:30,966
be difficult.

690
00:21:30,966 --> 00:21:32,400
And, finally, from a parent,

691
00:21:32,400 --> 00:21:33,533
"I wish it was required

692
00:21:33,533 --> 00:21:35,200
for every student."

693
00:21:35,200 --> 00:21:36,800
And from the teens, and I think

694
00:21:36,800 --> 00:21:38,366
listening to teens is really

695
00:21:38,366 --> 00:21:39,800
fun, "Pretty much all of us had

696
00:21:39,800 --> 00:21:41,233
some sort of interest that

697
00:21:41,233 --> 00:21:42,633
people usually don't.

698
00:21:42,633 --> 00:21:43,933
So it was interesting.

699
00:21:43,933 --> 00:21:45,833
It was really cool.

700
00:21:45,833 --> 00:21:47,300
We could share our ideas on,

701
00:21:47,300 --> 00:21:49,000
like, these weird topics."

702
00:21:49,000 --> 00:21:50,166
[LAUGHTER]

703
00:21:50,166 --> 00:21:51,233
And we do find that a lot

704
00:21:51,233 --> 00:21:52,600
when we interview kids.

705
00:21:52,600 --> 00:21:54,066
They talk about how nice it was

706
00:21:54,066 --> 00:21:55,933
to be able to share their

707
00:21:55,933 --> 00:21:57,466
specific interests.

708
00:21:57,466 --> 00:21:59,033
And if anyone has kids on the

709
00:21:59,033 --> 00:22:00,400
spectrum, or grandkids, I think

710
00:22:00,400 --> 00:22:01,833
you know what I'm talking about

711
00:22:01,833 --> 00:22:03,200
here.

712
00:22:03,200 --> 00:22:04,633
And another teen said, "When I'm

713
00:22:04,633 --> 00:22:06,466
riding home after group it feels

714
00:22:06,466 --> 00:22:08,766
like I'm tired but I'm happy.

715
00:22:08,766 --> 00:22:10,500
It's almost like you get this

716
00:22:10,500 --> 00:22:12,566
warm, fuzzy feeling."

717
00:22:12,566 --> 00:22:14,200
So I think that really shows the

718
00:22:14,200 --> 00:22:15,733
sense of social connection,

719
00:22:15,733 --> 00:22:17,233
especially for the teens to be

720
00:22:17,233 --> 00:22:18,666
able to have a positive

721
00:22:18,666 --> 00:22:21,700
experience with peers.

722
00:22:21,700 --> 00:22:23,566
We also, based on what we're

723
00:22:23,566 --> 00:22:26,533
finding in terms of the benefit

724
00:22:26,533 --> 00:22:29,166
of being in an education and

725
00:22:29,166 --> 00:22:30,633
support group with other

726
00:22:30,633 --> 00:22:32,866
families, we are part of the

727
00:22:32,866 --> 00:22:34,600
Center for Secondary Education

728
00:22:34,600 --> 00:22:36,333
for Students with ASD.

729
00:22:36,333 --> 00:22:39,433
And we're excited because

730
00:22:39,433 --> 00:22:41,100
Transitioning Together is going

731
00:22:41,100 --> 00:22:43,066
to be part of a comprehensive

732
00:22:43,066 --> 00:22:45,166
model in high schools.

733
00:22:45,166 --> 00:22:47,600
So it's a comprehensive model to

734
00:22:47,600 --> 00:22:50,366
improve outcomes for high school

735
00:22:50,366 --> 00:22:52,400
students on the autism spectrum.

736
00:22:52,400 --> 00:22:54,166
And we're partnering with five

737
00:22:54,166 --> 00:22:55,800
other universities.

738
00:22:55,800 --> 00:22:57,533
And, actually, it's going to be

739
00:22:57,533 --> 00:22:59,300
a randomized control trial in 60

740
00:22:59,300 --> 00:23:01,500
high schools across the country.

741
00:23:01,500 --> 00:23:03,200
And Transitioning Together is

742
00:23:03,200 --> 00:23:05,100
going to be one of the supports

743
00:23:05,100 --> 00:23:06,833
that's provided in these

744
00:23:06,833 --> 00:23:08,400
different high schools.

745
00:23:08,400 --> 00:23:10,000
So we're really excited to be

746
00:23:10,000 --> 00:23:11,366
part of this national project.

747
00:23:11,366 --> 00:23:12,866
And I want to give you just a

748
00:23:12,866 --> 00:23:15,066
little information about what

749
00:23:15,066 --> 00:23:17,066
this overall project is and how

750
00:23:17,066 --> 00:23:19,166
family support fits into it.

751
00:23:19,166 --> 00:23:21,366
So, CSESA, which is, again, the

752
00:23:21,366 --> 00:23:23,033
Center for Secondary Education

753
00:23:23,033 --> 00:23:25,033
for Students with ASD, has

754
00:23:25,033 --> 00:23:26,833
several components to try to

755
00:23:26,833 --> 00:23:28,500
improve outcomes after high

756
00:23:28,500 --> 00:23:31,566
school.

757
00:23:31,566 --> 00:23:33,300
And the first is foundations.

758
00:23:33,300 --> 00:23:36,400
And by that we mean providing

759
00:23:36,400 --> 00:23:38,000
professional development and

760
00:23:38,000 --> 00:23:39,633
coaching and support to

761
00:23:39,633 --> 00:23:41,233
educators around ASD.

762
00:23:41,233 --> 00:23:43,433
A lot of times even special

763
00:23:43,433 --> 00:23:44,900
educators may not have a lot of

764
00:23:44,900 --> 00:23:46,233
experience working with students

765
00:23:46,233 --> 00:23:47,766
on the spectrum.

766
00:23:47,766 --> 00:23:49,266
And so when we're working in

767
00:23:49,266 --> 00:23:50,666
these high schools, we're

768
00:23:50,666 --> 00:23:52,233
wanting to go in and provide

769
00:23:52,233 --> 00:23:53,733
support to the educators so they

770
00:23:53,733 --> 00:23:55,166
can in turn provide best

771
00:23:55,166 --> 00:23:57,166
practice to the students.

772
00:23:57,166 --> 00:24:00,633
There also are four main content

773
00:24:00,633 --> 00:24:02,366
areas that we think are really

774
00:24:02,366 --> 00:24:04,000
important to target with high

775
00:24:04,000 --> 00:24:05,366
school students with ASD.

776
00:24:05,366 --> 00:24:07,000
Academics is always important,

777
00:24:07,000 --> 00:24:08,533
but especially thinking about

778
00:24:08,533 --> 00:24:09,866
comprehension.

779
00:24:09,866 --> 00:24:11,533
Reading comprehension can be

780
00:24:11,533 --> 00:24:13,833
difficult for kids at any age,

781
00:24:13,833 --> 00:24:15,366
but especially by the time you

782
00:24:15,366 --> 00:24:16,833
get to high school there's a lot

783
00:24:16,833 --> 00:24:18,200
of reading involved, and that

784
00:24:18,200 --> 00:24:19,600
can be a hangup for some kids on

785
00:24:19,600 --> 00:24:20,866
the spectrum.

786
00:24:20,866 --> 00:24:22,300
Independence and behavior is

787
00:24:22,300 --> 00:24:23,533
another component.

788
00:24:23,533 --> 00:24:24,866
So thinking about helping

789
00:24:24,866 --> 00:24:27,066
teenagers learn to manage their

790
00:24:27,066 --> 00:24:28,666
own emotions and behavior and

791
00:24:28,666 --> 00:24:31,533
taking responsibility and having

792
00:24:31,533 --> 00:24:34,433
more independence.

793
00:24:34,433 --> 00:24:36,200
So not always having the parent

794
00:24:36,200 --> 00:24:38,400
make the bed for them.

795
00:24:38,400 --> 00:24:39,866
They can start to learn to do

796
00:24:39,866 --> 00:24:41,233
that themselves.

797
00:24:41,233 --> 00:24:42,666
Social clearly is an important

798
00:24:42,666 --> 00:24:44,033
area.

799
00:24:44,033 --> 00:24:46,066
So creating peer networks, peer

800
00:24:46,066 --> 00:24:47,833
mediated interventions directly

801
00:24:47,833 --> 00:24:49,233
instructing around social

802
00:24:49,233 --> 00:24:50,700
skills, and then transition in

803
00:24:50,700 --> 00:24:52,033
families.

804
00:24:52,033 --> 00:24:53,500
So that component is where

805
00:24:53,500 --> 00:24:55,000
Transitioning Together comes

806
00:24:55,000 --> 00:24:56,366
into play.

807
00:24:56,366 --> 00:24:57,733
And we're excited.

808
00:24:57,733 --> 00:24:59,633
The Department of Education has

809
00:24:59,633 --> 00:25:01,700
decided to fund this work and

810
00:25:01,700 --> 00:25:03,733
focus on improving outcomes for

811
00:25:03,733 --> 00:25:05,866
students with ASD.

812
00:25:05,866 --> 00:25:08,233
Part of the CSESA project is so

813
00:25:08,233 --> 00:25:09,766
comprehensive so that it's

814
00:25:09,766 --> 00:25:11,300
including families, and that's

815
00:25:11,300 --> 00:25:13,300
something I'm very glad to see.

816
00:25:13,300 --> 00:25:15,300
So just to wrap up, I want to

817
00:25:15,300 --> 00:25:17,600
thank many collaborators, mainly

818
00:25:17,600 --> 00:25:19,300
Marsha Mailick who's been a

819
00:25:19,300 --> 00:25:21,333
wonderful mentor and support to

820
00:25:21,333 --> 00:25:23,733
me, Jan Greenberg and Chris Coe,

821
00:25:23,733 --> 00:25:26,000
who are our other investigators

822
00:25:26,000 --> 00:25:27,266
here at the Waisman Center,

823
00:25:27,266 --> 00:25:29,266
Renee Makuch and Kate Szidon,

824
00:25:29,266 --> 00:25:30,700
our coordinators for the

825
00:25:30,700 --> 00:25:32,666
different projects, and Sam Odom

826
00:25:32,666 --> 00:25:34,933
and Kara Hume are the principal

827
00:25:34,933 --> 00:25:37,600
investigators for the core of

828
00:25:37,600 --> 00:25:40,000
the CSESA project, and they're

829
00:25:40,000 --> 00:25:41,266
in North Carolina.

830
00:25:41,266 --> 00:25:42,600
And there have been several

831
00:25:42,600 --> 00:25:44,800
different funders for all of

832
00:25:44,800 --> 00:25:46,600
this work over time.

833
00:25:46,600 --> 00:25:48,000
So we're very grateful for them.

834
00:25:48,000 --> 00:25:49,133
So, I will stop there and see if

835
00:25:49,133 --> 00:25:51,633
there are any questions.

836
00:25:51,633 --> 00:25:53,666
[APPLAUSE]