The Tie That Binds Intervention Research to Practice for Children and Youth with ASD

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1 The Tie That Binds Intervention Research to Practice for Children and Youth with ASD Samuel L. Odom Frank Porter Graham Child Development Institute University of North Carolina at Chapel Hill

2 Goals for the Presentation Autism from U.S. perspective Special education service context in U.S. for students with ASD Evidence-based practice movement in education in the U.S. Identification of evidence-based practices for students with ASD Implementation science as the tie that binds science to practice

3 ASD: Definition and Demographics DSM 5 incorporated from DSM IV Autistic Disorder Asperger Syndrome Pervasive Developmental Disorder-Not Otherwise Specified (PD-NOS) Rhett s Syndrome Common defining characteristics Difficulties in social communication Restrictive and repetitive behavior

4 ICD 10 F84.0 Childhood Autism F84.1 Typical Autism F84.2 Rett s Syndrome* F84.3 Child Disintegrative Disorder* F84.5 Asperger Syndrome F84.8 Other Pervasive Developmental Disorders F84.9 Pervasive Developmental Disorders Unspecified

5 DSM 5 Diagnostic Criteria Impairment in social communication Restricted repetitive and stereotyped patterns of behavior Onset prior to the age of three years

6 Discovery and Current Prevalence

7 ASD Prevalence ADDM Network

8 75% are male Multiple etiologies related to neurobiological causes Unrelated to socioeconomic status or race Range of IQ scores, but stretches across the continuum Demographics

9 Autism Mystique Probably more than any disability, or unique set of abilities, autism has been shrouded in a treatment mystique The etiology has gone from refrigerator mothers to epigenetics Treatments are more diverse than any known disabilities Treatment claims range from amelioration to recovery

10 Defense Against the Dark Arts Many interventions with no scientific evidence have been recommended for children with ASD

11 Cutting Edge Interventions for Autism (Seri & Lyons, 2012) Antifungal treatment Aquatic therapy Auditory Integration Therapy Chelation Removal of Toxic Metals Craniosacral and chiropractic therapy Dietary interventions Facilitated Communication Hyperbaric oxygen therapy Medicinal marijuana Sensory gym Traditional and indigenous healing Stem cell therapy

12 WHY IS THIS IMPORTANT? THE CASE OF FACILITATED COMMUNICATIONS

13 WHY IS THIS IMPORTANT? THE CASE OF FACILITATED COMMUNICATIONS

14 History of Disorder and Trends in Treatment in US Kanner s Discovery in 1940s Psychodynamic approaches (Kanner- Bettleheim-Greenspan) Lovaas application of Applied Behavior Analysis Structured psychoeducational approach (Project TEACCH)

15 The U.S. Context Individuals with Disabilities Education Act Created requirement that children with disabilities receive a free and appropriate education Educational Research Improvement Act Established Institute of Education Science Created the What Works Clearinghouse No Child Left Behind (Law) Required that educational practices be based on research.

16 Understanding Intervention Approaches for Learners with ASD Comprehensive Treatment Models Focused Intervention Practices Longer in duration Target multiple developmental domains At least 30 CTMs & a dearth of empirical evidence for most (Odom, Boyd, Hall, Hume, 2010) Shorter in duration Target discrete skills Represent the bulk of the evidence-base in the ASD literature

17 Comprehensive Treatment Strategies Multiple components (e.g., child-focused instruction, family-focused support) Broad scope (i.e., they may address several developmental domain or skill areas) Intensity (i.e., they often occur over an entire instructional day or in multiple settings such as a school/clinic and home) Longevity (i.e., they may occur over months or even years).

18 Review of CTMs 10 identified by National Academy of Science Committee (2002) 30 found in review and evaluation in 2010 (Odom, Boyd, Hall, & Hume, 2010) Relative Strong Models Denver Model (Early Start Denver Model) LEAP Lovaas Institute May Institute Princeton Child Development Institute Pivotal Response Treatment Efficacy studies lacking (Odom, Boyd, Hall, & Hume, 2014)

19 What s the Big Deal about Evidence-Based Practices

20 Evidence-Based Medicine The integration of the best available research evidence with clinical expertise and patient values. (Sackett et al., 2000)

21 Evidence-Based Practice (EBP) a decision-making process that integrates the best available research evidence with family & professional wisdom & values (Buysse & Wesley, 2006; Snyder, 2006; Winton, 2006)

22 Evidence-Based Practices (Buysse, Wesley, Winton, 2007)

23 What Counts as Evidence?

24 What Counts As Evidence? Peer-reviewed, refereed journal articles Methodologies Experimental Group Designs Quasi experimental designs Single subject designs

25 For Article to Be Acceptable For Group Design Met criteria established by Gersten, Fuchs, Compton, Coyne, Greenwood, & Innocenti (2005) For Single Case Design Met criteria established by Horner, Carr, Halle, McGee, Odom, & Wolery (2005)

26 Single Case Design A case may be a student, classroom, school, or district but usually a student Single case design studies are experiments in which the researcher manipulates that independent variable and observes the effect on the dependent variable. Single case designs are nearly always within subjects designs in which the subject serves as his/her own control

27 Single Case Design Single case designs require replication of treatment effects at least three times during the study (which is called experimental control) The methodology of single case design eliminate nearly all threats to internal validity Primarily two types of single case designs: Withdrawal of treatment Multiple baseline across subjects

demonstrate an intervention effect with at

28 Withdrawal Design Single-Case Design Withdrawal of Treatment Baseline (A) Intervention (B) Baseline (A) Intervention (B) At least THREE changes in conditions that demonstrate an intervention effect with at least THREE data points present in each baseline and intervention phase

29 Multiple Baseline Single-Case Design Multiple Baseline Baseline (A) Intervention (B) At least THREE intervention effects with appropriate delayed onsets with at least THREE data points present in each baseline and intervention phase

30 Criteria for Evidence-Based Practices for Focused Interventions (NPDC-ASD) Two high quality randomized experimental group design or quasi-experimental group designs that rule out selectivity and other threats to internal validity Five high quality single subject design Each study has at least three demonstrations of experimental control At least three different researchers in different locations

31 Criteria for Evidence-Based Practices for Focused Interventions (NPDC-ASD) Combined evidence One RCT or high quality quasiexperimental design At least three high quality single subject designs

Systematic Reviews of the Literature for Evidence Based Practices (EBPs) In 2010, 24 EBPs National Professional Development Center (NPDC) Included 10 years, 1997-2007 In 2014, 27 EBPs Second review

32 Systematic Reviews of the Literature for Evidence Based Practices (EBPs) In 2010, 24 EBPs National Professional Development Center (NPDC) Included 10 years, In 2014, 27 EBPs Second review by NPDC Included 22 years, ,101 possible studies 456 studies RCT, quasi-experimental, single case design Strength of evidence for assessment Based on number, type of studies using each EBP htthttp://autismpdc.fpg.unc.edu/sites/autismpdc.fpg.unc.edu/files/npdc_coachingmanual.pdfp://autismpdc. Odom, Manual.pdf

33 29,101 Published articles 25,662 Excluded on a title basis 3,439 Potentially appropriate articles 2,354 Excluded on abstract review 1,085 Potentially appropriate intervention studies 545 Excluded by external reviewers 540 Intervention studies 94 Excluded after final check 446 Acceptable studies

34 Content Analysis practice category practice category practice category practice category practice category practice category

35 Fundamental Applied Behavior Analysis Practices Reinforcement Prompts Time delay Modeling Task analysis Extinction

36 Positive Behavior Intervention and Support Functional assessment Antecedent-based intervention Response interruption/redirection Differential reinforcement of alternative/incompatible/ other behavior Functional communication training

37 Social Communication Interventions Social skills training Peer-mediated interventions and instruction Social narratives Structured play groups Picture Exchange Communication System (PECS )

38 Teaching Strategies Visual supports Discrete trial training Naturalistic interventions Pivotal response training Parent implemented interventions Scripting Exercise

39 EBPs Cognitive Behavior Self management Cognitive behavior interventions Technology Oriented Technology-assisted instruction and intervention Video modeling

40 EBP by Domain and Age

41 Eclecticism and Lessons Learned from Clinical Psychology Movement to Empirically Supported Treatments in 1990s Gilliard, James, & Bowman (1994) discuss the need for an eclectic approach Different forms of eclecticism exists Unsystematic eclecticism: a jack-of-all-trades-master-ofnone approach (Gilliland et al.,1994, p. 554) Technical eclecticism: selection of empirically supported treatments from different theoretical perspectives for use with an individual client (Lazarus & Beutler, 1993)

42 Stahmer, Schriebman, & Cunningham (2011) Propose a technology of treatment individualization based on Child Characteristics Family Characteristics Service Setting and System Premise: no single treatment works for all children. Some evidence that non-aba treatments have positive effects Stahmer, A., Schreibman, L., & Cunningham, A. (2011). Toward a technology of treatment individualization for young children with autism spectrum disorders. Brain Research, 1380,

$(manualized) system of assessment, \ treatment selection, and evaluation Necessary to stay close to the science in selecting$

43 A Technical Eclectic Approach Important to have a conceptual framework or theory of change Necessary to have a proscribed (manualized) system of assessment, \ treatment selection, and evaluation Necessary to stay close to the science in selecting interventions

44 Evidence-Based Practices are Delicious

45 Implementation: The Tie That Binds of what a program consists when it is delivered in a particular setting (Durlak & DuPre, 2008) a specified set of activities designed to put into practice a program of known dimensions, (Fixsen, et al., 2005) program delivered to and experienced by participants and their families (Odom, Hanson, Lieber, Butera, et al., 2008)

46 Implementation Science Research (Fixsen et al, 2005) Implementation research: scientific study of methods to promote use of research to reduce inappropriate care. Includes study of interventions to enable professionals to use research findings effectively Quality of replication fidelity - critical to successful outcomes. Low quality implementation unlikely to generate good outcomes

48 What Affects Implementation? Design of materials Match between intervention and teacher philosophy Professional development and technical assistance Administrative support Peer support (Chen, 1997; Durlak & DuPre, 2008; Domitrovitch & Nix, 2008 Fixsen et al., 2005)

49 External System Change Support System Change Practice Informed Policy Fixsen, Blase, Metz, Van Dyke (2013) Executive Management Team Policy Enabled Practice Implementation Team Practitioners EBPs Children & Families (Copyright Dean L. Fixsen and Karen A. Blase, 2009; used with permission.)

50 Stages of Implementation Process (Fixsen et al., 2013) Exploration Installation Initial Implementation Final Implementation

National Professional Development Center on Autism Spectrum Disorders A multi-university center to promote use of evidencebased practice for children and adolescents with autism spectrum disorders

51 National Professional Development Center on Autism Spectrum Disorders A multi-university center to promote use of evidencebased practice for children and adolescents with autism spectrum disorders FPG Child Development Institute, University of North Carolina at Chapel Hill; M.I.N.D. Institute, University of California at Davis Medical Center; Waisman Center, University of Wisconsin at Madison

52 National Professional Development Center on ASD (NPDC)

53 Interdisciplinary Teaming Program Ecology Learning Environment Structure & Schedule Positive Learning Climate Curriculum & Instruction Communication Social Competence Personal Independence Functional Behavior Assessment & IEP Transition (MHS only) Family Participation Program Quality Learner Outcomes

54 Autism Program Environment Rating Scale (APERS) Formats Preschool-Elementary Inclusion preschools Self-contained preschools K-5 (or beginning of middle school) inclusive K-5 self contained Middle School-High School Inclusive classes (assumes multiple classes) Self-contained classes Transition programs

55 P/E APERS Domains Learning Environments Learning Environment Structure/Schedule Positive Learning Climate Assessment and IEP Development Curriculum and Instruction Communication Social Competence Personal Independence and Competence Functional Behavior Family Involvement Teaming

57 Professional Development Training Online course Summer Institute Self-Study of Modules and Briefs Group Study of Modules and Briefs On-site specific training Coaching Recurring cyclical process of site specific support Online manual Training for TA Providers on coaching process Video examples

60 Elements of Successful Coaching Relationships Includes: Trust and mutual respect Training Willingness to change Professional attitude Reciprocity Communication

61 Coaching Components Preobservation Conference Select coaching target, obs plan, data collection plan Postobservation Conference Discuss obs, discuss ways to change behavior, plan for ongoing support 3 Components Of Cyclical Coaching Process Observation Collect data for meaningful discussion and planning Feedback & Support from NPDC

62 Respecting Territory Coaches are guest in the classroom but also there for a purpose Change the environments of a setting may happen in different ways

63 Wired: Enlightened Professional Development Ecological perspective on supports for professional development, adoption of innovation, and systems change Awareness of adaptation that occurs in local contexts The Blacksnake of Implementation

64 Technology as a Coaching Tool Telemedicine Laurie Vismara and Sally Rogers SKYPE Coaching TRI Program By Lynne Vernon-Feagans at UNC- Chapel Hill Covert Audio Coaching ( Bug in the Ear ) technology through Bluetooth My Teaching Partner work by Bob Pianta

65 Resource: National Professional Development Center Website

68 Questions and Discussion

Avoiding Loss in Translation: From Evidence-Based Practice to Implementation Science for Individuals with ASD

Avoiding Loss in Translation: From Evidence-Based Practice to Implementation Science for Individuals with ASD Samuel L. Odom FPG Child Development Institute University of North Carolina Goals of the Presentation