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10/15/16
1
Early interventions for ASD: Active ingredients and deployment in the
community
Connie Kasari. PhD
SPD Conference, SeattleNovember 5, 2016
Autism Intervention Research Network for Behavioral Health
None
Disclosures
1
Introduction
ba
Summary
3c
3 issues
10/15/16
2
1
Introduction
ba
Research topractice gap
Summary
3c
3 issues
1
Introduction
No singletreatment
ba
Research topractice gap
Summary
3c
3 issues
1
Introduction
No singletreatment
ba
Research topractice gap
Summary
3c
DeploymentSustainability
3 issues
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3
Today’s intervention landscape
LAUSD…
Hispanic
Other
Black
White
Hispanic
White
Black
Other
2nd largest school district; 14,000 students
with ASD
District as a whole is…..75% Hispanic;
80% free & reduced lunch;9% White
Students with ASD
Disparities are real…..
Public schools should be place without disparities in services
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3 Issues to consider……
There is a HUGE research to practice GAP
1
Most children with ASD have never been in a research study
AND MOST INTERVENTIONS have never been tested in any controlled study;
The ‘evidence-base’ does not reflect most children in the community (Weisz, 2004)
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Joint Attention !Symbolic Play Engagement !
Regulation JASPER Early Start Denver !Model ESDM Pivotal Response Training !
PRT Floortime DIR Developmental Individual !difference Relationship-based RDI Relationship !
Development Intervention Early Achievements Proj!ImPACT PEERS Secret Agent Society Discrete Trial !
Training DTT Verbal Behavior Intervention VB SCERT !Social Communication Emotion Regulation Transaction
Supports Unstuck and On Target Focused Playtime Intervention Adapted Responsive Intervention Joint
Attention Symbolic Play Engagement Regulation JASP!Early Start Denver Model ESDM Pivotal Response !Training PRT Floortime Developmental Individual !difference Relationship-based DIR Relationship !
Development Intervention RDI Early Achi !Project ImPACT PEERS Secret Agent!
Society Discrete Trial Trainin !DTT Verbal Behavior
Proliferation of programs
What is the evidence-base for early interventions?
We can improve cognitive outcomes (DQ) in young children with comprehensive, many hour
per week interventionsDTT- preschoolers30 hrs/wk vs. <10
40
50
60
70
80
90
100
Baseline 2 years
16 pts
1 pt
ESDM-toddlers25 hrs/wk vs. fewer hrs
40
50
60
70
80
90
100
Baseline 1 year 2 years
19 pts
5 pts
Smith, Groen & Wynn, AJMR, 2000 Dawson et al, Pediatrics, 2010
DQ points
n=28 n=48
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Reproducibility of findings
Problem in science
Original studies—small samples
Often do not replicate
Science, 2015
Confidence in findings?
Replications
DTT original Smith et al, 2000 n=28 p<.05Replication Sallows & Graupner, 2005 n=24 NS
ESDM original Dawson et al 2010 n=48 p<.05Replication Rogers et al 2014 n=98 NS
Follow up Studies
Rare…..
Follow up of ESDM, Estes et al, 2015 n= 39 NS
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Similar outcomes in brief parent mediated interventions?
Focused Playtime Intervention
40
50
60
70
80
90
100
Baseline 1 year
18 pts
14 pts
SCERTS
40
50
60
70
80
90
100
Baseline 9 months
6 pts
2 pts
Kasari, Siller et al, Infant Behavior & Development, 2014
DQ points
Wetherby et al, Pediatrics, 2014
Intervention phaseIntervention
phase
What do we make of these findings…..
Outcome measures
Active ingredients
Primary outcome has been IQ
Cannot rule out dose of intervention
Year of study matters—”the counterfactual”
But many factors can influence IQ
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While IQ is likely important; it is not a core
deficit of ASD
What are the active ingredients of early interventions?
DoseAgent of change (BCBA therapist, parent, other?)
Teaching approachContent ---what is focused on
Others…..
What are the active ingredients of early interventions?
✔DoseAgent of change (BCBA therapist, parent, other?)
✔Teaching approachContent ---what is focused on
Others…..
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What are the active ingredients of early interventions?
✔DoseAgent of change (BCBA therapist, parent, other?)
✔Teaching approach✔Content ---what is focused on
Others…..
Content focusing on core impairments
Social CommunicationRestricted, repetitive behaviors
To large extent, independent of IQ
Engagement Communicativegestures & language
Play
Early Core DeficitsSocial Communication
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Characteristics of ASD
Rigid, no joy in play
Object focused
Typical 17 month old
3 year old with ASD
EngagementRepetitive behavior
Social engagement, joint attention, shared
affect
Why focus on early core deficits?
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Language by age 5-6 best social outcomes (Lord, 2000; Rutter, 1978)
Joint attention predicts to language (Kasari et al,2008; Kasari et al, 2012; Mundy et al., 1986; Mundy, Sigman, & Kasari,
1990)
Play skills associated with cognitive abilities(Kasari et al, 2012)
Evidence suggests that approach matters for
improvements in joint attention, play, engagement
Spontaneous, child initiations
Differences in approach to teaching play
ABA-traditionalDTT teaching symbolic play
NDBIJASPER
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Joint Attention, Symbolic Play, Engagement, & Regulation
JASPER
Naturalistic Developmental Behavioral Intervention (Workgroup, 2014)
NDBI Targeted
Modular Short-term
Research Addressing Core Deficits
JASPER Core ConceptsJoint Attention
PlayEngagement
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JASPER Core StrategiesEnvironmental Arrangement
Imitation & ModelingRoutines (play)Programming for JALanguage Techniques
Toy choices in close proximity
Clear play space –(rug is defined play area)
Caregiver facing child
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Engagement
Play
Joint attention
Language
JASPER is a layered intervention
Highly replicable findings (therapists, teachers, parents)
é Joint engagementé Play skillsé Joint Attention
JASPER demonstrates effects above and beyond background treatment
Evidence
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Parent mediated interventions….strategies layered in over time
FIRST---Goalisselectedforchildthatisdevelopmentallyontarget—PHASE1(3weeks)
Environmentalarrangements(settinguptheenvironment)(andknowingchildplaylevel)
Allowingthechildtoinitiateanactivity(followingthechild’sattentionalfocus)Establishingandplayingwithinestablishedroutines
PHASE2(3weeks)Facilitating,maintainingengagementstatesBalancebetweenimitatingandmodeling
Expansions,showingenjoyment,eye-contactJointattention:recognizing,responding,modeling
PHASE3(3- 5weeks)AllowingchildaccesstocommunicationInitiatingandexpandinglanguage
GeneralizingskillsacrossotherroutinesPractice….upto2weeksmore
Someadditionalmodulescanfloat….”unengagedmodule”;“behaviorregulation”
Information Sharing Hands on Coaching
(Kasari, Gulsrud, Paparella, Hellemann, Berry, JCCP, 2015)
RCT—Comparative EfficacyN=86
050
100150200250300350400
Entry Exit Follow up
JASPER
Parent Education
Parent Mediated Interventions
Seco
nds
Child initiated joint engagement
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(Kasari, Gulsrud, Paparella, Hellemann, Berry, JCCP, 2015
Parent Mediated Intervention--Toddlers
86 children (2-3 year olds)
Comparison 2 interventions
20 sessions over 10 weeks
6 month follow up
JASPER groupé Joint engagement
é Play diversityé Play level
Group comparisonê Parenting stress
(Kasari, Lawton, Shih, Barker et al, Pediatrics, 2014
200
220
240
260
280
300
320
340
360
380
400
Entry Exit Follow up
JASPER
Group Education
RCT-Comparative EfficacyN=112
Parent Mediated InterventionChild initiated joint engagement
(Kasari, Lawton et al, Pediatrics, 2014)
Parent Mediated Intervention--Preschoolers
112 children (2-5 year olds)
Comparison 2 interventions
24 sessions over 12 weeks
3 month follow up
JASPER group
é Joint engagementé Symbolic playé Initiating JA
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Good evidence of improving core deficits using JASPER
(NDBI interventions)Ingersoll, 2011, JADD RCT—improvement in JA initiations from training
imitationWetherby et al, 2014, Pediatrics---improvement of collapsed requesting, joint
attention category
Major questions going forward..
What are the downstream effects?
Can the intervention be deployed effectively?
IJA predicts to expressive language 1 and 5 years later
1. Which strategies or ‘active ingredients’ affect change in outcomes
a. 2 studies testing mechanism….both parent mediated models--- in toddlers ‘mirrored pacing’ affects joint engagement for JASPER (Gulsrud et al, 2015, JCPP) and in preschoolers parental synchrony affects ASD symptoms for PACT (Pickles et al, 2014, JCPP)
Bridging research to practiceConsider….
Active ingredients will be very important in deployment to rural, distance sites----Macedonia
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1. Which strategies or ‘active ingredients’ affect change in outcomes
a. 2 studies testing mechanism….both parent mediated models--- in toddlers ‘mirrored pacing’ affects joint engagement for JASPER (Gulsrud et al, 2015, JCPP) and in preschoolers parental synchrony affects ASD symptoms for PACT (Pickles et al, 2014, JCPP)
2. Strategies, modules to build a comprehensive program
a. Clinicians more likely to adopt a module than completely changing practices (Chorpita et al, 2005; Weisz et al, 2012)
Bridging research to practiceConsider….
A single treatment is not effective for all!
2
Methodologies are needed to personalize, tailor interventions
Address for whom the intervention works, and why…..
Sequence treatments…..
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Need: Diversify samples, in real world settings
Problem is that researchers tend to exclude subpopulations
Minimally verbal often excluded
NIH Workshop Who are the ‘minimally verbal’
• Clear most are not ‘nonverbal’
• Defined by number of functional words spoken
• Some can speak but rarely do or only in some contexts
• Treatment is often to do MORE of the same…..
• (or less, blaming child for lack of progress)
Sequence of treatments
Adaptations based on child response
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DEFINITION: A sequence of decision rules that specify whether, how, when (timing) and
based on which measures, to alter the dosage (duration, frequency or amount), type or
delivery of treatment(s) at decision stages in the course of care.
Adaptive Intervention designs systematize clinical practice
SMART design
Sequential Multiple Assignment Randomized Trial
Characterizing Cognition in Nonverbal Children with ASD (CCNIA) Intervention
61 children aged 5 to 8 years
Minimally verbal (fewer than 20 functional words)
Had already received 2 years of intensive early intervention
ALL received JASPER plus a spoken language intervention
(EMT)
HALF randomized to also receive Speech Generating Device (iPad)
Kasari, Kaiser, Landa, Neitfeld, Mathy, Murphy, Almirall, JAACAP, 2014
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Slide courtesy of Danny Almirall May 16, 2014
Minimally verbal and meaningful outcomes
2030
4050
6070
Week
Tota
l Soc
ially
Com
mun
icat
ive U
ttera
nces
0 12 24 36
●
●
●
●
●
●
●
●
●
JAE+EMT+AACJAE+EMT
Socially communicative utterances
Novel words and comments
Kasari, Kaiser, Goods, Neitfeld, Mathy, Landa, Murphy, Almirall, JAACAP, 2014
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Minimally verbalSchool aged: No words in beginning; needs access to
communication
Preverbal child: preschool aged
Day 1
Day 2
Day 12
Deployment can be limitedSustainability poor
Training models and implementation fidelity
3
1. Deployment focused modelsIntervention development and testing with participants within
context (e.g., homes/schools) for which intervention is intended and by people intended to deliver the intervention (e.g.,
parents, teachers)
2. Hybrid implementation modelsFocus on implementation and outcomes
3. Community partnered participatory research models
Shared goals and responsibilities
Sustainability might be improved by…
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Deployment Models
Train the trainer models; deploying to paraeducators who are doing both assessment and intervention
NYTD
LAPDFitting the intervention
into existing structure with support
!
Ya-Chih Chang, PhD
Stephanie Shire, PhD
Chang, Shire, Shih, Kasari, 2016, JADDShire, Chang, Shih, Bracaglia, Kodjoe, & Kasari, 2016, JCPP
JASPER findings similar to lab when conducted in school: Better joint engagement with others
05
101520253035404550
JASPER Wait
EntryExit
Perc
enta
ge o
f tim
e
Nonverbal gestures (high level joint attention)
0
5
10
15
20
25
30
35
40
JASPER Wait
EntryExit
Perc
enta
ge o
f chi
ldre
n us
ing
poin
ts, s
how
s, g
ives
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Change in Language
0
10
20
30
40
50
60
70
JASPER Wait list
ENTRYEXIt
% o
f chi
ldre
n us
ing
lang
uage
Community partnered participatory research models
(AIR-B Network)
Sustainable Change
Community-Academic
Partnership
Modular
Implementation Sustainability
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We know some things
• Can change core impairments and improve meaningful outcomes
• Teaching others matters----parents, teachers, and peers
• Evidence of some generalization and longer term outcomes
We have much to learn!• Active ingredients
• dismantling studies
• Personalizing treatments• adaptive designs• delivering interventions just when needed
• Disseminating effective interventions into the community using hybrid implementation models
Appreciation to families and children who participate in studiesFunding sources• NICHD, NINDS, NIMH, HRSA, Autism Speaks, Merck Fund
Lab…..research assistants, graduate students, post-docs Amy Dominguez, Caitlin McCracken, Andy Schlink, Maria Pizzano, Kiana Krolick, Marina Mladenovic, Marcella Mattos, Nichole Tu, Alyssa Tan, Broghan Hedges, Marta Wirga, Devyn Tharnstrom, Jamie Crisostomo, Hilary Gould, Jonathan Panganiban, KC Berry, Alison Holbrook, Chrissy Kang, Belinda Williams, Jill Locke, Mark Kretzmann, Michelle Dean
Colleagues-UCLA—
Amanda Gulsrud,PhD, Stephanie Shire, PhD, Shafali Jeste, MD
Acknowledgements