Research Panel: know our data and get involved! Diane Cullinane, MD Josh Feder, MD Connie Lillas, PhD, MFT, RN Lois Black, PhD Devin Casenheiser, PhD Jim Stieben, PhD
The Southern California DIRŽ/Floortime™ Regional Institute Pasadena, California October 2010- May 2011
Josh Feder, MD jdfeder@pol.net
Diane Cullinane, MD diane@pasadenachilddevelopment.org
Mona Delahooke, PhD mdelahooke@socal.rr.com
Pat Marquart, MFT patmarquart@aol.com
Support Parent Choice Today! www.dirfloortimecoc.com
Top 10 Research articles to persuade and educate legislators and other powers that be Diane Cullinane, M.D.
The Roots ď Ž
ď Ž
Greenspan, S.I. and Wieder, S. (1997) Developmental patterns and outcomes in infants and children with disorders in relating and communicating: A chart review of 200 cases of children with autistic spectrum diagnoses. Journal of Developmental and Learning Disorders 1:87-141 Greenspan, S.I. and Wieder, S. (2005) Can Children with Autism Master the Core Deficits and Become Empathetic, Creative and Reflective? A Ten to Fifteen Year Follow-up of a Subgroup of Children with Autism Spectrum Disorders (ASD) Who Received a Comprehensive Developmental, IndividualDifference, Relationship-Based (DIR) Approach. The Journal of Developmental and Learning Disorders 9.
Specifically DIR/FT ď Ž
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), 205224.
Relationship Focused intervention
Mahoney, G. & Perales, F. (2003). Using relationship-focused intervention to enhance the social-emotional functioning of young children with autism spectrum disorders. Topics in Early Childhood Special Education, 23, 74-86. Mahoney, G., and Perales, F. (2005) “Relationship-focused early intervention with children with pervasive developmental disorders and other disabilities: a comparative study.” Journal of Developmental & Behavioral Pediatrics 26: 77-85.
Parent mediated Intervention ď Ž
Kasari, Gulsrud, Wong, Kwon, & Locke. Randomized Controlled Caregiver Mediated Joint Engagement Intervention for Toddlers with Autism. J. Autism Dev Disord (2010)
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.
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.
Reviews ď Ž
ď Ž
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 Systematic Review. (2008)
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
Getting Started in Research
Josh Feder, MD
‘But I’m a clinician’
Why are you HERE? Learn more Make friends Step gradually Help out Persist, and maybe perseverate
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…
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
Overcoming Challenges
Efficiency studies (vs. Efficacy Studies) FEAS, SEGC Reflective Community Consensus Process BRIDGE – going post-denominational (thanks Stanley)
Tuning Into Each Other Customizing Project ImPACT to address our key community values and reach younger children for the SoCal BRIDGE Collaborative
BRIDGE
Community collaboration Parents, clinicians, researchers, agencies, funders Vetting ideas Learning from each other Coming to consensus
Taking Project ImPACT…..
Parent driven Mixed developmental/ behavioral Language focused Specific goals
ImPACT
And make it ours
Warm it up Broaden the vision Give it our context
BRIDGE Enhancements
Engagement Communication Sensori-motor Reflective process
Warmed up‌
Project ImPACT
And Make it Ours
The Evidence Based Movement: 19th Century Science versus Complexity: Welcome to the 21st Century
Connie Lillas, PhD, MFT, RN
California Quake Crisis
Legislators do not understand the issues DIR not on EI & DMH list of approved therapies Need for ‘push back’ nationally
Pushing Back – the Problem
Reductionist, narrow research paradigms Outdated research models Children are complex
Pushing Back - 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
Insist on Clarity: E-B-Treatments do NOT equal E-B-Practice
Evidence-Based Practice is:
A decision making process 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
Insist on Match Between Research Approach & Clinical Population
Problems with Gold Standard Research:
Often simple, subclinical cases are involved in research settings Designed for single diagnosis, not matching cooccurring 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
21st Century Vision for Paradigm Shift in Research
“…a critical question for the field is what approach to empirical testing will give us the strongest treatments that are most robust in actual clinical practice”
(Weisz & Gray, 2008, p. 62)
Get Involved! Practice-Based Evidence
Push-back with complex clinical cases that drive scientist’s 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 system’s research paradigms that can hold complexity
The Importance of Affect: Research in Support of DIR Intervention
Lois M. Black, Ph.D. Faculty DIR Institute Clinical Psychologist/Pediatric Neuropsychologist Research Professor Oregon Health & Science University
Black, et al., IMFAR 2009: Understanding the Effects of Enhancing Vocal Prosody on Childrenʼ s Comprehension and Retention of Story Narratives
Participants: N=79 Ages 4-8, overall IQ > 70. ASD group N=37 TD group N=42 NARRATIVES: •Affectively-rich, interpersonal stories. •Factual + Social Cognitive Information •Immediate and delayed questions •Goal: What are the effects of enhancing vocal prosody – affect in one’s voice -- on comprehension and retention of information?
3 Prosodic Modes: “Disconnected” –
Recorded words in random order, concatenated words together into sentences Imposed synthetic pitch contour on sentences Minimal grammatical prosody; no pragmatic or affective prosody
“Standard”
stress correct syllable – word meaning intelligible descending or ascending contours -- questions and statements
intact grammatical, minimal pragmatic, affective prosody
“Enhanced”
exaggerated grammatical, pragmatic, affective prosody
Results p<0.001 p>0.25
Enhanced Standard Disconnected p<0.001
Significant results: ANOVA analysis, with Prosodic Mode (E vs. S vs. D), Group (ASD vs. TD), and Story as independent variables, resulted in a significant interaction between Group and Prosodic Mode. ASD children better able to answer narrative questions as prosody became enhanced from D to S to E, for both immediate and delayed questions.
Findings, cont’d:
No such beneficial effect of prosodic mode was seen in the TD group. (Essentially no differences across disconnected, standard and enhanced conditions.) TD performed better than ASD children in all prosodic modes. Trends were found for the interaction to be more pronounced for the social 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.
Critical Elements for DIR Intervention Research Pre-treatment
measures Heterogeneity/How we know who our children are Post-treatment/Outcome measures What are we striving to achieve for our children Treatment Fidelity
manual
measures
What we need most
Treatment Fidelity
manual
measures
The Final Frontier: Research on DIR速 on both Clinical and Functional Imaging Outcomes
Devin Casenheiser, PhD Jim Stieben, PhD Stuart Shanker, D. Phil. Oxon
The York MEHRI Study
2 hours per week FT coaching Study population & controls
Ages 2;0 – 4;11 with diagnosis of autism
Immediate and 12-month Delayed Treatment
Clinical measurement of effects
ADOS/ADI
mChild Behavior Rating Scale PLS/CASL
Dense-Array Electroencephalography
Findings: (redacted here because publication pending) ď Ž ď Ž
Clinical improvement Brain Change
Implications
Profound evidence Comparison w/ other imaging studies Next steps (studies, advocacy)
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