Evolution of Research on Interventions for Individuals with Autism Spectrum Disorder: Implications for Behavior Analysts. Tristram Smith, Ph.D.

Transcription

1 Evolution of Research on Interventions for Individuals with Autism Spectrum Disorder: Implications for Behavior Analysts Tristram Smith, Ph.D.

2 Rapid Growth Near consensus that early intensive ABA is effective (Reichow, 2012, JADD) Increased recognition of BCBA credential and insurance coverage (now in 34 states) Burgeoning numbers of ABAI members and BCBA certificants (now > 13,000) 2

3 Challenges to sustainability and progress Competition Balance of advocacy and research 3

4 Topics 1. Challenges a. Competition b. Balance of advocacy and research 2. Framework for guiding intervention development: phases of research 3. Future directions 4

5 Topic #1: Competition

6 Intervention Research in ASD Until recently, almost all research has focused on ABA interventions -Smith, 1988 (Am Psychologist) -Smith, 1993 (in Giles) -Smith, 1996 (in Maurice, Green, & Luce) -Smith, 1999 (Clin Psych: Science & Practice) -Smith, 2005 (in Jacobson, Foxx, & Mulick) -Smith, 2008 (EBMHP)

7 Rapid expansion of research on interventions for individuals with ASD in recent years 7

8 Combating Autism Act (2006, 2011) considered by some to be the most comprehensive piece of single-disease legislation ever passed by the United States Congress (Autism Speaks, 2011) President Bush signing the Combating Autism Act, 12/19/2006 President Obama signing the Combating Autism Reauthorization Act, 9/30/2011 8

9 Combating Autism Act Essentially a declaration of war on autism Aimed at providing immediate help to individuals with ASD Authorizes hundreds of millions of dollars for research, much of it on treatment studies 9

10 Funded Projects, 2010 (Interagency Autism Coordinating Committee) N = 1,367 $408,577,276 10

11 Biology Treatment Service Diagnosis Risk Factors Epidemiology Lifespan # Studies

12 Studies Led by Behavior Analysts, 2010 Defined by membership in the Association for Behavior Analysis International N = 57 (12% of studies on treatment and service) 22 small, self-funded studies (mostly by the Center for Autism and Related Disorders) Doesn t include studies of ABA interventions (or interventions that include ABA procedures) led by other investigators 12

13 Commentary (Smith, 2012, in press, TBA) One reviewer s reaction: other disciplines research interests in ASD could be a minor issue compared with research reports from ABA..., the reported benefits of non-aba interventions are quite narrow But how strong are the findings from ABA research? 13

14 Topic #2: Balance of Advocacy and Research

15 Prevalent View Among Behavior Analysts Numerous evidence-based ABA practices Not only early intensive behavioral intervention (EIBI) for ASD but also many others Impact attenuated by misunderstandings of outside professionals 15

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18 Commentary Misunderstandings are indeed widespread Edge.com (2014): What scientific idea is ready for retirement? Baron-Cohen: radical behaviorism Allegedly responsible for capturing baby orcas in the wild and mistreating them in captivity 18

19 Commentary Regardless, we still need to be self-critical about what is and isn t evidence-based ABA practice The function of identifying evidence-based practices is to offer reliable guidance for: Consumers Providers Funders Researchers 19

20 Behavior analytic reviews of the ASD intervention literature National Autism Center (2009) All published studies through 2007 Team of expert advisors National Professional Development Center (NDPC, 2014) Federally funded network to improve educational services for children with ASD 20

21 Evidence-based Practices (National Autism Center, 2009) 1. EIBI 7. Peer training package 2. Antecedent package 3. Behavioral package 4. Joint attention tx 5. Modeling 6. Naturalistic teaching strategies 8. Pivotal Response Treatment 9. Schedules 10.Self-management 11. Story-based intervention package 21

22 Evidence-Based Practices (NPDC) 1. Prompting 14. Naturalistic strategies* 2. Antecedent Tx* 3. Time delay 4. Reinforcement 5. Task analysis 6. Discrete trials (EIBI)* 7. Functional ABA* 8. Functional Communication Tx 9. Response interruption/redirection 10. Differential S R 11. Social narratives* 12. Video modeling* 13. Cognitive-Behavioral Intervention *In NAC report 15. Peer-mediated tx* 16. Pivotal Response Tx* 17. Visual Supports 18. Work systems 19. Self-management* 20. Group Social Skills Tx 21. AAC devices 22. Computer-aided tx 23. PECS 24. Extinction 25. Parent tx 26. Scripting 27. Structured play group 22

23 Methodological note Well-established standards for conducting systematic reviews (e.g., PRISMA, MARS, AMSTAR) Not followed in reviews of single-subject literature Example: checking for publication bias Studies with favorable outcomes more likely to be submitted to and accepted by journals 23

24 Preliminary analysis in ABA literature (Sham & Smith, in press, JABA) Focused on one well-established intervention (Pivotal Response Treatment) Large, easily searchable literature Compared published articles and unpublished dissertations Standard, validated quasi-experimental design (McLeod & Weisz, 2004, JCCP) Check whether methodologies are similar and, if so, compare findings 24

25 PRT 21 published articles, 10 dissertations Methodologies Similar participants, interventionists, and amount of treatment Similar methodological quality 25

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27 Implications Published studies on PRT have substantially larger effect sizes than unpublished dissertations PRT still appears effective But publication bias is a potential concern 27

28 Limitation #1: Piecemeal Many items are isolated procedures Formats for teaching a new skill Tactics for reducing problem behavior Example: time delay Brief interval between instruction and prompt Two meta-analyses (Browder, 2009, Exceptional Children; Walker, 2008, JADD), systematic review (NPDC, 2014) But far from a standalone intervention 28

29 Limitation #2: Unreplicable Many items are packages that vary from study to study Example: antecedent package No information on: Essential and optional features Sequence for introducing components Trouble-shooting Monitoring fidelity of implementation 29

30 Limitation #2 (cont.) Some packages are compilations of procedures Example: Evidence-Based Individualized Program for Students with ASD (Odom et al., 2012, BMod) Comprised of the 27 procedures identified by NPDC Many useful resources How-to guides, video-recorded examples, literature reviews But no information on choice of procedures, curriculum, teacher training, fidelity, progress-monitoring, etc. 30

31 Limitation #3: Incompletely tested Example: feeding problems in ASD Primary outcome in all published ABA studies acceptance of previously rejected foods (Seiverling et al., 2011, RASD) But children with ASD seldom have nutritional deficiencies (Hyman et al., 2012, Pediatrics) Nutritional status rarely reported in ABA studies Other outcomes likely more important (e.g., reduced family stress, more chances for social interaction) 31

32 Limitation #3 (cont.) Peer-mediated intervention Primary outcome is usually increasing rate of initiation of or response to social bids (Zhang & Wheeler, 2011, Education & Tx in Autism) But autism is defined by a qualitative (not necessarily quantitative) deficit in social interaction In any case, increased initiations or responses may or may not be helpful in themselves 32

33 Limitation #3 (cont.) Example: reading interventions for ASD Primary outcome: sight-reading (Browder et al., 2006, Exceptional Children) But this is usually already a strength for children with ASD Reading requires many other skills (e.g., phonemic awareness, comprehension) 33

34 Limitation #4: Impractical Case in point: BACB Practice Guidelines for Focused ABA : Examples... include establishing compliance with medical and dental procedures, sleep hygiene, selfcare skills, safe and independent leisure skills Focused treatments generally range from hours per week of direct therapy (plus direct and indirect supervision hours) Implication is that models for deploying focused ABA have not been developed and tested 34

35 Commentary To qualify as an evidence-based practice, an intervention approach must be demonstrably: Useful to individuals with ASD Usable by independent providers Many ABA approaches for individuals with ASD reliably change behavior, but most are insufficiently developed to be considered EBP 35

36 Further Commentary Although research indicates that EIBI accelerates development for some children, no studies have tested whether other ABA interventions help individuals with ASD: Become healthier Succeed academically or vocationally Make friends 36

37 Illustration Systematic review by the RAND Corporation (Maglione et al., 2012, Pediatrics): No interventions with excellent evidence Four with moderate evidence Two ABA approaches: EIBI and PECS Two packages (largely of ABA approaches) by investigators in other disciplines: Early Start Denver Model and Social Skills Training 37

38 Topic #3: Phases of Research

39 Phases of Research (Smith, Scahill et al. 2007, JADD) 1. Formulation and systematic application of a new intervention procedures Single-subject experiments (specialty of behavior analysts) are useful for initial efficacy studies

40 Phases of Research (cont.) 2. Preparation of manual and standardized research protocols Most problems require packages of procedures Packages must balance standardization and flexibility Intervention manuals are the primary technology for achieving this balance Although behavior analysts warn against packaging incompletely tested procedures, they emphasize that packages are crucial (Birnbrauer, 1979; Johnston, 1996; Johnston et al., 2006, TBA) 40

41 The challenge is to design the bits and pieces of a procedure into an integrated and often complex whole... At some point, however, everything that has been learned should suggest a reasonable combination of procedural elements as a focus for further analytic attention (Johnston, 1993, p. 330, in van Houten & Axelrod) 41

42 Phases of Research (cont.) 3. Group studies such as randomized clinical trials (RCTs) to test efficacy of the package as a whole in controlled settings 4. Effectiveness studies to examine outcomes in community settings Although skeptical of RCTs, behavior analysts acknowledge their utility 42

43 Skinner (1968, Technology of Teaching) We still use group comparisons to test different kinds of therapies Such comparisons roughly correspond to those in the field of public health (p. 249) Public health is certainly relevant to costly problems such as ASD and other issues addressed in ABA 43

44 Johnston & Pennypacker (1993, Readings) Group comparisons are valid for actuarial purposes such as performing [l]arge-scale educational evaluation or contrasting different interventions (p. 96) They are quite appropriate (p. 190) in that context. Actuarial issues are prominent in ASD interventions Comparison studies are needed if we want to recommend ABA interventions over alternatives 44

45 Johnston (1988, TBA) Single-subject experiments are well-suited to developing and refining new procedures Group comparisons such as RCTs should be should be the very last type of investigation that a procedure encounters (Johnston, 1988, TBA, p. 91). Similar to views expressed by methodologists in other disciplines 45

46 Implications for ASD research Many Phase 1 studies on specific procedures EIBI is one of the few tested packages Current priorities: Assemble procedures into manuals that focus on important problems Assess outcomes of package as a whole (probably in group studies) 46

47 Topic #4: Future Directions

48 Priorities for Phase 1 studies Formulate interventions for under-researched problems associated with ASD. For example: Pretend play Perspective-taking Studies in Rochester: Inflexible routines (Napolitano et al., 2010, JABA; Oakes et al., 2012, IMFAR) Assist in initial testing of interventions developed outside ABA. For example: Testing components of intervention packages Augmenting group studies (e.g., Smith et al., 2011, ABAI on gluten-free casein-free diet) 48

49 Scale Score Ritvo Total Score # 28 Placebo Casein Only Gluten Only Gluten+Casein Challenge 49

50 Priorities for Phase 2 studies Develop and pilot manuals that combine procedures with support from single-subject studies. For example: Incidental teaching (e.g., PRT) Peer-mediated instruction (45 studies; Zhang & Wheeler, 2011) and video modeling (23 studies; Bellini & Akullian, 2007, Exceptional Children) School-age classroom interventions (45+ studies; Machalicek, 2008, RASD) 50

51 Phase 2 studies (cont.) Studies in which Rochester participates: Parent training: Feeding (Smith/Hyman, NIMH) with Pittsburgh (Johnson) Elopement (McAdam, Autism Speaks) Toilet Training (Mruzek, AIR-P/ATN) with Ohio State (Butter) and Vanderbilt (Loring) 51

52 Priorities for Phase 3 studies Test new manuals and compare interventions. For example: LEAP vs. treatment as usual (Strain & Bovey, 2011, TECSE) 52

53 Phase 3 Studies in Rochester Discrete trials vs. developmental intervention for communication (with UCLA and KKI) Adaptive trial of discrete trials and developmental intervention (with UCLA, Vanderbilt, Cornell, Michigan) Parent training vs. parent education for preschoolers with autism (with Emory, Yale, Pittsburgh, OSU, Indiana) Atomoxetine and parent training for school-age children with ASD + ADHD (with Pittsburgh and OSU) School-based social skills training (led by Lopata/Volker in Buffalo) 53

54 Priorities for Phase 4 studies Evaluations of interventions in real world settings. For example: LEAP vs. TEACCH vs. treatment as usual (Boyd et al., 2013, JADD) STAR vs. treatment as usual (Mandell et al., 2013, Autism) Study now underway in Rochester: Community-based participatory research with large urban school districts (with UCLA and Penn) 54

55 Caveats Scaling up usually requires extramural funding Have not succeeded in obtaining support for: Large RCT of EIBI vs. alternate treatment Supported inclusion of older children No guarantee that scaling up will succeed Still necessary to attempt 55

56 Conclusion [I]t takes all the running you can do, to keep in the same place (The Red Queen in Lewis Carroll, Through the Looking Glass) Increase in intervention research offers clear advantages for individuals with ASD and families 56

57 Acknowledgements 1 R01 MH (Smith/Hyman) Atomoxetine, Placebo, and Parent Training in Autism 1 R01 MH (Smith) Multisite RCT of Early Intervention for Spoken Communication in Autism 1 R01 MH (Smith) Randomized Trial of Parent Training for Young Children with Autism 1 R01 HD (Kasari) Adaptive Interventions for Minimally Verbal Children with ASD in the Community (AIM-ASD) ATN-CRT (Hyman/Smith) Autism Treatment Network UA3MC11055 (Kasari) Autism Intervention Research Network for Behavioral Health, Rochester PI: Smith IES (Lopata) Efficacy of Comprehensive School-Based Intervention for Children with High Functioning Autism Spectrum Disorders (HFASD) 1 R34 MH (Smith) Treatment for Feeding Problems in Children with Autism

58 Questions??? 1. Challenges: competition and balance 2. Phases of research 3. Future directions

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