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

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

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

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

DSM 5 Diagnostic Criteria

• Impairment in social communication

• Restricted repetitive and stereotyped patterns of behavior

• Onset prior to the age of three years

Discovery and Current Prevalence

ASD PrevalenceADDM Network 2000 - 2008

Demographics

• 75% are male

• Multiple etiologies related to neurobiological causes

• Unrelated to socioeconomic status or race

• Range of IQ scores, but stretches across the continuum

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

Defense Against the Dark Arts

• Many interventions with no scientific evidence have been recommended for children with ASD

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

WHY IS THIS IMPORTANT?THE CASE OF FACILITATED

COMMUNICATIONS

https://www.youtube.com/watch?v=DQcPsCVUHbs

WHY IS THIS IMPORTANT?THE CASE OF FACILITATED

COMMUNICATIONS

https://www.youtube.com/watch?v=OQgK4L9cWHQ

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 psycho-educational approach (Project TEACCH)

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.

Understanding Intervention Approaches for Learners with ASD

Focused Intervention Practices

• Shorter in duration

• Target discrete skills

• Represent the bulk of the evidence-base in the ASD literature

Comprehensive Treatment Models

• Longer in duration

• Target multiple developmental domains

• At least 30 CTMs & a dearth of empirical evidence for most (Odom, Boyd, Hall, Hume, 2010)

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).

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)

What’s the Big Deal about

Evidence-Based Practices

Evidence-Based Medicine

The integration of the best available research evidence with clinical expertise and patient values.

(Sackett et al., 2000)

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)

Evidence-Based Practices

(Buysse, Wesley, Winton, 2007)

What Counts as Evidence?

What Counts As Evidence?

• Peer-reviewed, refereed journal articles

• Methodologies

– Experimental Group Designs

– Quasi experimental designs

– Single subject designs

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)

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

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

Single-Case Design

Withdrawal Design

Withdrawal of Treatment

At least THREE changes in conditions that demonstrate an intervention effect with at least THREEdata points present in each baseline and intervention phase

Baseline (A) Intervention (B) Baseline (A) Intervention (B)

Single-Case Design

Multiple Baseline

Multiple BaselineBaseline (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

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 controlAt least three different researchers in different

locations

Criteria for Evidence-Based Practices for Focused Interventions (NPDC-ASD)

Combined evidence One RCT or high quality quasi-

experimental 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 by NPDC

– Included 22 years, 1990-2011

• 29,101 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,

http://autismpdc.fpg.unc.edu/sites/autismpdc.fpg.unc.edu/files/NPDC_CoachingManual.pdf

29,101

Published articles

1,085 Potentially

appropriate

intervention studies

3,439 Potentially

appropriate articles

25,662 Excluded on a

title basis

2,354 Excluded on

abstract review

94 Excluded after

final check

446 Acceptable

studies

545 Excluded by

external reviewers

540 Intervention

studies

Content Analysis

practice category

practice category

practice category

practice category

practice category

practice category

Fundamental Applied Behavior Analysis Practices

• Reinforcement

• Prompts

• Time delay

• Modeling

• Task analysis

• Extinction

Positive Behavior Intervention and Support

• Functional assessment

• Antecedent-based intervention

• Response interruption/redirection

• Differential reinforcement of alternative/incompatible/other behavior

• Functional communication training

Social Communication Interventions

• Social skills training

• Peer-mediated interventions and instruction

• Social narratives

• Structured play groups

• Picture Exchange Communication System (PECS®)

Teaching Strategies

• Visual supports

• Discrete trial training

• Naturalistic interventions

• Pivotal response training

• Parent implemented interventions

• Scripting

• Exercise

EBPs

Cognitive Behavior

• Self management

• Cognitive behavior interventions

Technology Oriented

• Technology-assisted instruction and intervention

• Video modeling

EBP by Domain and Age

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-of-

none 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)

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, 229-239.

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

\

Evidence-Based Practices are Delicious

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)

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

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)

Fixsen, Blase, Metz, Van Dyke (2013)

Implementation

Team

Executive Management

Team

Practitioners

EBPs

Children & Families

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“Ext

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Pra

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e In

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Po

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Po

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Practice

(Copyright Dean L. Fixsen and Karen A. Blase, 2009;

used with permission.)

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 evidence-based 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

National Professional Development Center on ASD (NPDC)

Learning Environment

Interdisciplinary Teaming

Program Ecology

Structure & Schedule

Positive Learning Climate

Curriculum & Instruction

Communication

Social Competence

Personal Independence

Functional Behavior

Assessment & IEP

Family Participation

Program Quality

Learner Outcomes

Transition (MHS only)

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

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

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

http://autismpdc.fpg.unc.edu/coaching-

resources

Elements of Successful Coaching Relationships

Includes:

• Trust and mutual respect

• Training

• Willingness to change

• Professional attitude

• Reciprocity

• Communication

3 Components Of CyclicalCoaching Process

Coaching Components

PreobservationConference

Select coaching target, obs plan, data collection

plan

PostobservationConference

Discuss obs, discuss ways to change

behavior, plan for ongoing support

Observation

Collect data for meaningful

discussion and planning

Feedback & Support from NPDC

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

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

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

Resource: National Professional Development Center Website

http://autismpdc.fpg.unc.edu

http://csesa.fpg.unc.edu/

Questions and Discussion