dir summer inst research panel
TRANSCRIPT
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Research Panel: know our data
and get involved!
Diane Cullinane, MD
Josh Feder, MDConnie Lillas, PhD, MFT, RN
Lois Black, PhD
Devin Casenheiser, PhD
Jim Stieben, PhD
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The Southern California DIR/Floortime Regional InstitutePasadena, California October 2010- May 2011
Josh Feder, MD Diane Cullinane, MD
[email protected] [email protected]
Mona Delahooke, PhD Pat Marquart, MFT
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Support Parent Choice Today!www.dirfloortimecoc.com
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Top 10 Research articles to
persuade and educate legislatorsand other powers that be
Diane Cullinane, M.D.
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The Roots
Greenspan, S.I. and Wieder, S. (1997) Developmental patternsand outcomes in infants and children with disorders in relatingand communicating: A chart review of 200 cases of childrenwith autistic spectrum diagnoses. Journal of Developmentaland Learning Disorders 1:87-141
Greenspan, S.I. and Wieder, S. (2005) Can Children withAutism Master the Core Deficits and Become Empathetic,Creative and Reflective? A Ten to Fifteen Year Follow-up of aSubgroup of Children with Autism Spectrum Disorders (ASD)Who Received a Comprehensive Developmental, Individual-
Difference, Relationship-Based (DIR) Approach. The Journalof Developmental and Learning Disorders 9.
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Specifically DIR/FT
Solomon, R., Necheles, J., Ferch, C., &
Bruckman, D. (2008). Pilot study of a
parent training program for young children
with autism: the P.L.A.Y. Project Home
Consultation Program. Autism, 11(3), 205-
224.
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Parent mediated Intervention
Kasari, Gulsrud, Wong, Kwon, & Locke.
Randomized Controlled Caregiver Mediated
Joint Engagement Intervention for Toddlers
with Autism. J. Autism Dev Disord (2010)
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The Scotts
Salt, Shemilt et. al. The Scottish Centre for
Autism preschool treatment programme. II
The results of a controlled treatment
outcome study. (2002) SAGE publications
of The National Autistics Society. Vol 6(1)
33-46.
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A Hybrid
Dawson, G., Rogers, S., Munson, J., Smith, M.,
Winter, J., Greenson, J., Donaldson, A. &
Varley, J. (2009). Randomized controlled
trial of an intervention for toddlers with
autism. The Early Start Denver Model.
Pediatrics. Online verson e17-e23.
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Reviews
Odom, Boyd, Hall, & Hume. Evaluation of
Comprehensive Treatment Models for
Individuals with Autism Spectrum Disorders.
J Autism Dev Disord (2009)
Ospina, M. et al. Behavioural and
Developmental Interventions for Autism
Spectrum Disorder: A Clinical SystematicReview. (2008)
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The best is yet to come!
Drs. Devin Casenhiser, Jim Steiben, Stuart Shanker and
everyone at York / MEHRI
The York Study!
Dr. Rick Solomon
The Play Project
Dr. Josh Feder
The Bridge Project
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GettingStarted in Research
Josh Feder, MD
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But Im a clinician
Why are you HERE?
Learn more
Make friends Step gradually
Help out
Persist, and maybe perseverate
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Learn about Evidence Based Practice
Evidence Based Medicine Sackett 1995
Best Available Research combined with
Clinical Judgment and Experience
For the Purpose of Informed Consent
Parent Choice!
More from Connie later
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Understand the Challenges of Doing Research
Subjective experience (affect) is at the center
Heterogeneity: all the people are so different
More than one treatment at a time
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Overcoming Challenges
Efficiency studies (vs. Efficacy Studies)
FEAS, SEGC
Reflective Community Consensus Process BRIDGE going post-denominational (thanks
Stanley)
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Tuning Into Each OtherTuning Into Each Other
Customizing Project ImPACTCustomizing Project ImPACT
to address our key community values and reach younger children forto address our key community values and reach younger children for
the SoCal BRIDGE Collaborativethe SoCal BRIDGE Collaborative
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BRIDGE
Community collaboration
Parents, clinicians, researchers, agencies,
funders
Vetting ideas
Learning from each other
Coming to consensus
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Taking Project ImPACT..
Parent driven
Mixed developmental/ behavioral
Language focused Specific goals
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ImPACT
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And make it ours
Warm it up
Broaden the vision
Give it our context
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BRIDGE Enhancements
Engagement
Communication
Sensori-motor Reflective process
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Warmed up
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Project ImPACT
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And Make it Ours
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The Evidence Based Movement: 19thCenturyScience versus Complexity:W
elcome to the 21st Century
Connie Lillas, PhD, MFT, RN
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California Quake Crisis
Legislators do not understand the issues
DIR not on EI & DMH list of approved
therapies
Need for push back nationally
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PushingBack the Problem
Reductionist, narrow research paradigms
Outdated research models
Children are complex
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PushingBack - Solutions
Advocacy from Parent to Professional
Know and educate colleagues about the
difference between Evidence Based Practice and
Evidence Based Treatments Educate about research paradigm matches
versus mismatches
Support research that is practice-based evidence
Promote professional and parental critical thinking
and informed choice
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Insist on Clarity:
E-B
-T
reatments doNOT
equal E-B
-Practice Evidence-Based Practice is:
A decision makingprocess that holds the tension
between:
The best available clinical research (EBTs)
Professional wisdom based in sound theory and practice
Cultural and family values (with informed choice) Buysee and Wesley, 2006
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Insist on Match Between ResearchApproach & Clinical Population
Problems with Gold Standard Research:
Often simple, subclinical cases are involved in
research settings
Designed for single diagnosis, not matching co-occurring diagnoses
Lacks flexibility to account for individual
differences
Lacks flexibility for following a therapeutic alliance,
shifts in behaviors, and cultural sensitivities In Lillas and Turnbull, 2009, from Weisz &Gray, 2008
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21st Century Vision for Paradigm Shift inResearch
a critical question for the field is what
approach to empirical testing will give us the
strongest treatments that are most robust inactual clinical practice
(Weisz & Gray, 2008, p. 62)
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Get Involved!Practice-Based Evidence
Push-back with complex clinical cases that drive
scientists search for new knowledge
Attend conferences and join organizations with
child development researchers (map)
Take complex models and frameworks into
clinical research settings Search and find cutting-edge dynamic systems
research paradigms that can hold complexity
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The Importance ofAffect:Research in Support of DIR Intervention
Lois M. Black, Ph.D.
Faculty DIR Institute
Clinical Psychologist/Pediatric NeuropsychologistResearch Professor
Oregon Health & Science University
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Black, et al., IMFAR 2009: Understanding the Effects of Enhancing Vocal
Prosody on Childrens Comprehension and Retention of StoryNarratives
Participants: N=79Ages 4-8, overall IQ > 70.
ASD group N=37
TD group N=42
3 Prosodic Modes: Disconnected
Recorded words in random order,concatenated words together intosentences
Imposed synthetic pitch contouron sentences
Minimal grammatical prosody; nopragmatic or affective prosody stress correct syllable word
meaning intelligible descending or ascending
contours -- questions andstatements
Standard intact grammatical, minimal
pragmatic, affective prosody
Enhanced exaggerated grammatical,
pragmatic, affective prosody
NARRATIVES:
Affectively-rich, interpersonal
stories.
Factual + Social Cognitive
Information
Immediate and delayed questions
Goal: What are the effects of
enhancing vocal prosody affect in
ones voice -- on comprehension
and retention of information?
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Results Enhanced
Standard
Disconnectedp>0.25
p
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Findings, contd:
No such beneficial effect of prosodic mode was seen in the TDgroup. (Essentially no differences across disconnected, standardand enhanced conditions.)
TD performed better than ASD children in all prosodic modes.
Trends were found for the interaction to be more pronounced for thesocial cognitive questions.
Conclusions:
Enhanced prosody specifically targeted to highlight the multiple
levels of information in complex verbal communication helps
comprehension and retention of information in children with ASD,
in particular, social cognitive information.
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Critical Elements for DIR InterventionResearch
Pre-treatment measures
Heterogeneity/How we know who ourchildren are
Post-treatment/Outcome measures
What are we striving to achieve forour children
Treatment manual
Fidelity measures
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What we need most
Treatment manual
Fidelity measures
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The Final Frontier: Research onDIR on both Clinical and
Functional ImagingOutcomes
Devin Casenheiser, PhD
Jim Stieben, PhD
Stuart Shanker, D. Phil. Oxon
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The York MEHRI Study
2 hours per week FT coaching
Study population & controls
Ages 2;0 4;11 with diagnosis of autism
ADOS/ADI
Immediate and 12-month Delayed Treatment
Clinical measurement of effects
mChild Behavior Rating Scale PLS/CASL
Dense-Array Electroencephalography
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Findings: (redacted here because
publication pending) Clinical improvement
Brain Change
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Implications
Profound evidence
Comparison w/ other imaging studies
Next steps (studies, advocacy)
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Your Thoughts!