Science of Autism: Etiology to Professional Practice

Transcription

1 Science of Autism: Etiology to Professional Practice Samuel L. Odom Frank Porter Graham Child Development Institute University of North Carolina at Chapel Hill

2 Jag tackar Stockholms univeristets utnämning av mig som hedersdoktor. Att vara ärad pa detta sätt är en höjdpunkt i min karriär. Tyvärr är min Svenska begränsad, sa jag fortsätter mitt tal pa Engelska.

3 Features of talk Describe the range of phenotypes (characteristics) of individuals with Autism Spectrum Disorders Present current information on etiology Describe current information from neuroscience about autism Most current approaches to early screening, identification, and diagnosis Approaches to early intervention Features of programs for preschool-elementary school child Intervention programs for high school students Delivering effective programs and preparation of professionals Unique role of special education

4 Autism: The facts AUTISM = AUTISM SPECTRUM DISORDERS (ASD) Common features Deficits Social Communication Restricted and Repetitive Behavior Strength Security in sameness Affinity for visual information/processing Prevalence is 1 in 68 Most are boys 40-60% do not have intellectual disability

5 The Range of the Spectrum

6 The Range of the Spectrum

7 Etiology or Cause of Autism What we know are NOT the causes of autism Refrigerators mothers Vaccines Genetics Implicated Prevalence of younger sibling having autism in family with older sibling with autism is 1 in 5 (as compared to 1 in 68). Concept of the broader autism phenotype Family member with ADHD, learning disabilities, OCD

8 Genetics Implicated but What Do We Know? Fragile X Syndrome 46% of boys 16% of girls Retts syndrome 500 potential gene targets could cause mutations leading to ASD 10-20% cases significant genetic link (Bailey, 2016)

9 Genetics Problem When genes or gene combinations found: the phenotype of characteristics of individuals with ASD are very broad. Goal of genetics researchers PRECISION MEDICINE Genomic analysis àidentification of genetic mutations (syndrome)à Individualized treatment

10 Neuroscience Characteristics Large head circumference Overgrowth of neurons (67% more neurons in prefrontal cortex than typical infants) Pathways disrupted Cell specification laid down prenatal gestation Neuronal cell development between end of first trimester and being of third trimester

11 Over-connectivity (Courchesne and USCD group)

12 Differential Activation As Predictor (Courchesne and UCSD group)

13 Oxytosin

14 Looking for Early Predictors or Causal Agents Tooth Fairy Study Pesticides and other agents resides in enamel (Palmer et al., in process) First year birthday party videos: Not responding to name Gaze Avoidance AimeKlin s work Absence of orientation to faces/mom or dad

15 Early Screening and Diagnosis: Major Initiative in US Center for Disease Control and Prevention Two major early screening and diagnosis models Amy Wetherby at Florida State Karen Pierce at UC-San Diego Key features Involvement of the pediatric physician and nursing community Screening at well baby checks at 6 and 9 months Active mode of referrals

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19 Diagnosis of ASD at months Early autism profile present in month olds: General delays Gestural communication and joint attention deficits Impaired emotional responsivity Language delays/deviance Lack of imitation Lack of symbolic play Repetitive behaviors Atypical sensory responses Charman et al 1998; Johnson et al., 1992; Stone et al., 1997, 1998 Lord et al., ; Wetherby et al 1998; Cox et al., 1999 Rogers et al., 2003, 2004

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21 Videos: Guiding Questions What did you notice? What is atypical? What would be typical of a child at the ages shown? How might this affect learning and development?

22 Programs for Children and Youth with ASD: Early Intervention Earlier diagnosis of infants and toddlers with ASD has changed the nature of intervention programs from traditional structured preschool and school-age approaches Early developmental behavioral interventions (Schreibmann et al., 2015)

23 Intensive Developmental Behavioral Interventions (Schreibman et al. 2014) Blend of developmental targets and behavioral intervention or teaching approaches Examples: Early Start Denver Model (Rogers and Dawson) Incidental teaching (McGee) Enhanced milieu model (Kaiser) Joint Attention and Symbolic Play (Kasari) Pivotal Response Treatment (Schreibman; Koegels) First Words Project (Wetherby) Early Achievement (Landa)

24 Features of IDBI Applied behavior analysis principles Developmental targets Manualized and clear measure of fidelity of implementation Ongoing progress measurement Child-initiated Adult modeling and also imitation of child Environmental arrangements Prompting and fading Balance between turns with objects and social play routines Broadened attention

25 Joint Attention Mediated Learning for Toddlers with AUTISM (JAML) Goal: Promote Joint Attention of Toddlers with ASD Home-based intervention Target behaviors Focusing on Faces Turn taking Responding to joint attention Initiating joint attention Mediated Learning Principles Focusing (on target behavior) Organizing and Planning Encouraging Giving Meaning Expanding

26 Focus on Faces Turn Taking Pretest Posttest Follow-up Pretest Posttest Follow-up Case Control Case Control Responding to Joint Attention Initiating Joint Attention Pretest Posttest Follow-up Pretest Posttest Follow-up Case Control Case Control

27 Programs for Children and Youth with ASD: Classroom-based Programs (Preschool and Elementary)

28 Brief Description of Early Intensive Behavioral Intervention Overview Lovaas Institute Theoretical foundation: Applied Behavior Analysis Originated in the state of CA in 1960 s Programmatic Features Primary clinic-based or home-based (but not usually parent implemented) Usually an assessment that identifies skills to be taught Usually discrete trial training Adult primary instructor May be movement to larger group or peer group activities as child progress 10/4/16 28

29 Brief Description of TEACCH Overview Treatment and Education of Autistic and related Communicationhandicapped Children Theoretical foundation: Cognitive social learning theory Originated in the state of NC in 1960 s Programmatic Features Self-contained classrooms for children often are used Adult-structured learning opportunities are used Classroom environment is arranged based on characteristics of autism Special education teacher is the primary instructor Strong parent involvement component 10/4/16 29

30 Brief Description of LEAP Overview Learning Experiences: Alternative Programs for Preschoolers and Parents Theoretical Foundation: Blend of ABA and theories of child development Originated in the state of PA in 1980 s Programmatic Features Typically developing children are full-time class members Naturalistic teaching strategies are used Classroom environment mirrors typical early childhood setting Co-teaching model of instruction Strong parent training component 30

31 Brief Description of NPDC Model Overview Developed through the National Professional Development Center on ASD Theoretical Foundation: Technical eclectic model Originated in NC as part of a professional development center. Programmatic Features Assessment of quality of program environment Specification of individual goals for children with autism that are measureable and observable Link goals to specific evidence-based practices Teacher-implementation of evidence-based practices 31

32 TESELA Model (The Efficacy Study of Elementary Learners with Autism)

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34 Features of APERS Two APERS formats: PE; MHS Organized by domains and subdomains Applicable in self-contained and inclusive programs Scored on a five-point scale with behavioral anchors at three points Results can be summarized by scores or graphs

35 Autism Program Environment Rating Scale (APERS) Designed to assess quality indicators of programs for children and youth with ASD Purposes of the APERS Coaching & Consultation Professional development Program evaluation

36 APERS Components APERS Domains Items Type of Items Preschool/ Elementary Observation = 33 Interview = 31 Middle/High Observation = 33 Interview = 33

37 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

38 MHS 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 Transition

39 Example: Score of 3

40 How Do We Collect This Information? Observation in program across the school day Review IEP Interview teacher(s) Interview parent(s) Interview team member Self-Assessment

41 Evidence-Based Practices Wong et al recently updated Odom et al. (2010) EBP review autismpdc.fpg.unc.edu/files/2014- EBP-Report.pdf Began with pool of 29,105+ articles and reduced to EBPs identified

42 Evidence Based Practices (2014) Antecedent-based interventions Cognitive behavioral intervention* Differential reinforcement Discrete trial training Exercise* Extinction Functional behavior assessment Functional communication training Modeling* Naturalistic interventions Parent-implemented intervention Peer-mediated instruction/intervention Picture Exchange Communication SystemÔ Pivotal response training Prompting Reinforcement Response interruption/redirection Scripting* Self-management Social narratives Social skills training Structured play groups* Task analysis Technology-aided intervention/instruction* Time delay Video modeling Visual supports * Added from 2014literature review

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46 High School and Transition

47 Perfect Storm of Complexity Autism Adolescents High School

48 Perfect Storm of Complexity: Autism Autism Spectrum Disorder (ASD) Social communication challenges Restrictive and repetitive behavior Need for stable, predictable environment Range of cognitive and academic abilities from intellectually gifted to intellectually disabled But, most experience challenges related to academics Prevalence in the US has increased markedly in recent years: Now 1:68. Predominantly boys (75%)

49 Perfect Storm of Complexity: Adolescents Adolescents: years Characteristics Establishing identity Establishing independence Increasing influence of peer group Establishing sexual identity and puberty Raging sea of hormones Preparation for the future Not early risers Exploration of alcohol and drugs

50 Perfect Storm of Complexity: High School Settings In US, high schools are large: Begin at either grade 9 or 10 (three to four years for most students) The class day usually (but not always) starts early: sometimes 07:00. Change from mostly small amount of class changes to large amount of class changes Characterized by extremely complicated class schedules and scheduling system Always involves multiple class changes and transitions between classrooms. Issues of bullying has become a prime focus in the US.

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53 Fixsen, Blase, Metz, Van Dyke (2013) Implementation Science As A Key Feature (Copyright Dean L. Fixsen and Karen A. Blase, 2009; used with permission.)

54 Two Synthesis Reviews Damschroeder et al. (2009) Consolidated Framework for Implementation Research Examined 18 IS Models Features Intervention Outer setting Inner setting Characteristics of individuals involved Implementation process (plan, evaluate, reflect) Meyers, Durlak, & Wandersman (2012). Quality Implementation Framework Examined 25 IS Models Phases Initial consideration by host Creating a Structure for Implementation Ongoing structure once implementation begins Improving future application

55 Drivers Drivers Drivers Stages AND Drivers DRIVERS Metz (2013)

56 Implementation Process

57 During Exploration and Early Installment Stages Key features at Exploration are: Obtaining initial buy-in from district administration Obtaining initial buy-in from local school personnel Identification of leadership of CSESA effort within the schools (special ed, speech path, member of administration) Having clearly articulated and documented roles and responsibilities Highlight the benefits to the schools in addition to student outcome (i.e., resources for professional development) Forming the team, sharing information about the program and making sure team members are on board before proceeding.

58 Key Features at Installation Stage Previous agreement for time and resources A Team meeting to plan implementation Learning about components Determining the order of implementation Training on Goal Attainment Scaling Providing the necessary materials for the component implementation

59 Key Coaching Is an Essential Feature of Implementation and Technical Assistance A minimum of one day per week on site or remotely Rapport and relationship Mutual respect Agreed upon goals Time Tools EBP or other practices Fidelity checklists Feedback Planning iles/npdc_coachingmanual.pdf

60 APERS DATA

61 APERS Treatment Comparison for COHORT APERS Total 2.9 Pre Post SAU CSESA

62 APERS Independence Pre Post SAU CSESA Pre Behavior Post SAU CSESA APERS Social APERS Transition Pre SAU CSESA Post Pre SAU CSESA Post

63 How Can This Work in the United States Federal law that prescribes requirements of education programs Requires highly qualified teachers and related services personnel Proposes that children and youth with autism (and other disabilities) be served in the least restrictive environment All of this requires a trained workforce Teacher and related services preparation programs At the college and university level, a work force of doctoral level professionals who can train teachers and conduct research

64 Tack så mycket