Dir summer inst research panel 2 3 redacted for posting on circlestretch 041911

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

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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 

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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! 

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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  

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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  

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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  

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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 

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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:

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The best available clinical research (EBTs)

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Professional wisdom based in sound theory and practice

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Cultural and family values (with informed choice) –

Buysee and Wesley, 2006

Insist on Match Between Research Approach & Clinical Population 

Problems with Gold Standard Research: 

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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 

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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

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Participants: N=79 Ages 4-8, overall IQ > 70.

ASD group N=37 TD group N=42

3 Prosodic Modes:  “Disconnected” – 

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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?

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stress correct syllable – word meaning intelligible

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descending or ascending contours -- questions and statements

“Standard” 

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Recorded words in random order, concatenated words together into sentences Imposed synthetic pitch contour on sentences Minimal grammatical prosody; no pragmatic or affective prosody

intact grammatical, minimal pragmatic, affective prosody

“Enhanced” 

exaggerated grammatical, pragmatic, affective prosody

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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.)

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TD performed better than ASD children in all prosodic modes.

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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 ●

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Treatment manual

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Fidelity measures

What we need most

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Treatment manual

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Fidelity 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\ Clinical measurement of effects Functional Imaging

Findings:   

Clinical improvement Brain looks better!

Publication status

Implications   

Profound evidence Comparison w/ other imaging studies Next steps (studies, advocacy)

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