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Page 1: Are outcome measures for early intensive treatment of autism improving?

Research in Autism Spectrum Disorders 8 (2014) 178–185

Contents lists available at ScienceDirect

Research in Autism Spectrum Disorders

Jo u rn al h om ep ag e: h t tp : / /ees .e lsev ier . co m /RASD/d efau l t .as p

Review

Are outcome measures for early intensive treatment of autism

improving?

Johnny L. Matson, Robert D. Rieske *

Louisiana State University, USA

A R T I C L E I N F O

Article history:

Received 14 November 2013

Accepted 21 November 2013

Keywords:

Autism Spectrum Disorders

Early Intensive Behavioral Intervention (E-

IBI)

Methodology

Assessment

A B S T R A C T

Autism Spectrum Disorders (ASD) are lifelong conditions which can be very debilitating.

This disorder can be identified within the first two years of life, thus spurring the

popularity of Early Intensive Behavioral Interventions (EIBI). Since 1987, the number of

studies has been increasing as efficacy has been established. There has been a broad and

inconsistent set of methods and procedures to establish experimental groups, evaluate

treatment outcome, and assessing family reactions to treatment. In 2007, Matson noted

that most EIBI studies failed to address many important dependent variables include the

measurement of core symptoms of ASD. This study evaluates dependent variables used to

assess the factors noted above, separated into studies published before 2008 compared to

2008 and later. Results are an indication that improvements are occurring, especially on

the measurement of core symptoms of ASD; however, considerably more improvement is

needed.

� 2013 Elsevier Ltd. All rights reserved.

Contents

1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

2. Early Intensive Behavioral Interventions (EIBI) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

3. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

3.1. Adaptive behavior/developmental course . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

3.2. Group assignment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180

3.3. Core symptoms. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180

3.4. Psychopathology and challenging behaviors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180

3.5. Target behaviors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180

3.6. Treatment fidelity. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180

3.7. Consumer/family satisfaction. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183

3.8. Side effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183

4. Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183

* Corresponding author at: Department of Psychology, Louisiana State University, 236 Audubon Hall, Baton Rouge, LA 70803, USA. Tel.: +1 801 372 6739;

fax: +1 225 578 4125.

E-mail address: [email protected] (R.D. Rieske).

1750-9467/$ – see front matter � 2013 Elsevier Ltd. All rights reserved.

http://dx.doi.org/10.1016/j.rasd.2013.11.006

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J.L. Matson, R.D. Rieske / Research in Autism Spectrum Disorders 8 (2014) 178–185 179

1. Introduction

The prevalence of Autism Spectrum Disorders (ASD) has increased drastically in recent decades (Matson & Kozlowski,2011). This point is underscored by the fact that the condition has a lifelong course (Fodstad, Matson, Hess, & Neal, 2009;Horovitz & Matson, 2010; Matson, Boisjoli, Hess, & Wilkins, 2010; Matson, Dempsey, & Fodstad, 2009; Matson, Hattier, &Belva, 2012). ASD is pervasive, affecting communication, adaptive and social skills, and often overall cognitive functioning(Hattier & Matson, 2012; Matson, Kozlowski, & Matson, 2012; Matson & Wilkins, 2009; Smith & Matson, 2010a,b,c).Additionally, the disorder is often co-morbid with a host of motor problems, challenging behaviors, and psychopathology(Matson, Hess, & Boisjoli, 2010; Matson & Rivet, 2008; Matson, Tureck, & Rieske, 2012; Sipes, Matson, & Horovitz, 2011). As aresult of these factors there has been a concerted effort by many researchers to develop methods and procedures that wouldenhance the reliability, consistency, and validity of assessment. This problem is compounded by the complexity of theoverall problem. Persons can range from intellectually gifted to profoundly intellectually impaired for example (Matson,Dempsey, LoVullo, & Wilkins, 2008; Matson & Wilkins, 2008). Not only is the condition heterogeneous but it is furthercomplicated by comorbidities (LoVullo & Matson, 2009; Matson & LoVullo, 2008; Matson & Neal, 2009; Matson, Wilkins,et al., 2009; Rojahn et al., 2009). This heterogeneity has led to the use of packaged interventions referred to as Early IntensiveBehavioral Interventions (EIBI).

2. Early Intensive Behavioral Interventions (EIBI)

EIBI has become a popular approach in the rehabilitation of young children with ASD (Barton, Lawrence, & Deurloo,2012; Boyd, Odom, Humphreys, & Sam, 2010; Matson, Tureck, Turygin, Beighley, & Rieske, 2012). In fact, as of this writingthey are easily the most studied and utilized treatment in the field of ASD. As a result, it has been argued that acomprehensive assessment is a critical element of intensive programs (Gould, Dixon, Najdouski, Smith, & Tarbox, 2011).Researchers, however, have pointed out that many limitations exist in how these treatments are evaluated. Generally,there has been a piecemeal model of assessment versus researchers using a comprehensive standardized model(Eikeseth, 2009).

In a paper by the senior author published in 2007, concerns were raised regarding the problems that exist with respect tooutcome measures. The outcome methods used define what can be concluded about the interventions that are employedand what constitutes effective. A number of content areas should be evaluated. These areas include: (1) measures ofadaptive behavior and development; (2) using separate measures for group assignment and for evaluating treatmenteffectiveness; (3) ASD core symptoms; (4) measures of comorbid psychopathology and challenging behaviors; (5)operational target behaviors and the measurement of maintaining variables; (6) the measurement of treatment fidelity; (7)the assessment of consumer/family satisfaction; and (8) the measurement of side effects. A selective sample of paperspublished prior to 2008, and a second cohort of papers published from 2008 to 2013 was evaluated on each of theseparameters. The goal was to determine how many articles address the most criteria and which criteria are measured.Furthermore, the current study aimed to examine if researchers are making progress in these areas, and if so, on whatassessment parameters.

3. Results

Articles were selected via a search of Scopus using the terms ‘‘Early Intensive Behavioral Interventions’’ (EIBI), and‘‘Autism Spectrum Disorders’’. Additionally, a hand search of relevant papers was conducted. Using the approach a total of 25EIBI studied over the span of 1987–2013 were sampled that measured outcomes. The papers were separated into a group of 8papers published in 2007 or before and 17 papers published after 2007. This approach was followed to gauge whether themethods used as a means of assessing EIBI studies have improved since the discussion of methodological shortcomings inthis research area (Matson, 2007). An analysis of the 8 major areas for assessment follows:

3.1. Adaptive behavior/developmental course

Prior to 2008, all 8 papers reviewed used had measures fitting this category. Among the 17 studies published after thisdate, 14 (82%) met this criteria. A major concern with children this young (usually 2–5 years of age) is that standardized I.Q.tests are not a particularly valid measure of adaptive behavior or developmental course in this population. Of the 8 papersprior to 2008, 6 (75%) used some variant of the Weschler Scales or the Stauford-Binet, with or without adaptive behaviormeasures. For the latter group of studies, 6 (33%) papers provided standardized I.Q. tests, and for two studies, the LeiterInternational Performance Scale (Leiter) and the Peabody Picture Vocabulary Test (PPVT) were used. This trend isencouraging. First, because fewer researchers are relying on traditional I.Q. tests and are using developmental scales instead.Second, when standardized I.Q. tests are used with young children evincing autism, nonverbal performance measures suchas the Leiter or PPVT are preferred. Thus, on this first criteria, improvement was noted even though fewer studies usedmeasures to assess adaptive behavior and developmental course overall.

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3.2. Group assignment

Measurement methods for group assignment should be reported and standardized tests, observations, clinical history,and a relevant diagnostic system such as DSM or the WHO-ICD should be employed. Many studies simply state that theperson had been diagnosed with autism or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), or whatprofessional qualifications the practitioner possessed. Unfortunately, having a license as a physician or psychologist does notensure a reliable or valid diagnosis. Prior to 2008, 5 (63%) studies reported the use of diagnostic criteria; typically DSM. Nostudy reported specific scaling methods. In the latter group of papers 8 (47%) reported diagnostic methods in general and 6(35%) reported standardized measures of core symptoms of ASD. The improvement in assessment methods in the category ismuch improved. However, a good deal is yet to be done on improving methods of measurement for group assignment.

3.3. Core symptoms

In the 2007 (Matson) paper critiquing EIBI outcome measures, the greatest concern was the general failure to includestandardized measures of ASD. This issue was very problematic since the primary objective of intervention for ASD is toimprove symptoms of ASD. This point seems straight forward. In the early papers, 1 study (13%) used standardized measuresof ASD. The Reynell Developmental Language Scales measures a subset of ASD symptoms and was used in 3 studies, butreally does not qualify. For the later studies, 12 (71%) papers describe standardized tests of core symptoms of ASD. One studyused the Preschool Language Scales; however, this study did not qualify. These data are very encouraging in that majorimprovements in measurement of core symptoms of ASD, the most important criteria, are substantial. Nonetheless, at thispoint in time it is remarkable that any EIBI treatment study would not have a core measure of ASD.

3.4. Psychopathology and challenging behaviors

A considerable literature has developed demonstrating that a set of problems frequently co-occurs along with ASD.Among the most frequent, prominent, and problematic of these are various psychological disorders and challengingbehaviors (Hattier, Matson, Belva, & Horovitz, 2011; Matson & Nebel-Schwalm, 2007; Worley & Matson, 2011). ADHD, forexample is present for roughly half of the group diagnosed with ASD (Matson, Rieske, & Williams, 2013). Prior to 2008, 2(25%) papers reported the use of measures to assess collateral psychopathology. The Child Behavior Checklist was used inboth instances. The Personality Inventory for Children was used in one case. Neither of these scales was designed for use withan ASD population. For more recent studies, 7 (41%) employed measures of psychopathology. Two studies used scalesspecific to this population; the Autism Spectrum Disorders–Behavior Problems for Children. These were the only two papersthat systematically addressed challenging behaviors. As with the other categories addressed, the later studies have increasedthe amount of focus on measuring this topic.

3.5. Target behaviors

Operationally defined target behaviors are a very important component for any evaluation of EIBI programs. This methodadds two important elements to the overall evaluation of treatment effectiveness. First, data is taken in another dimension;rather than global impressions rated by caregivers or therapists, these data are based on counting specific observedbehaviors. Among studies published prior to 2008, 3 (38%) reported data that could be included in this category. One studyassessed social interactions and challenging behaviors. Thus, for one study there was some overlap with category 4.However, these target behaviors should complement not replace standardized measures of challenging behaviors, since thelatter is used to screen for a broad range of potential behaviors, while the former is a sensitive measure of a few particularproblematic behaviors (subjectively determined without a standardized test). A second study used speech problems astarget behaviors. The third example was in Lovaas’s (1987) original paper and dealt with the type of class placement the childreceived; regular versus special education placement, for example, would denote greater improvement. No EIBI study sincehas used this method, nor is that being advised here. Many factors in addition to improvement in autism symptoms mayeffect placement. Among the newer studies, 3 (38%) papers addressed this category on challenging behaviors. Thus, unlikethe other categories we have reviewed, no improvement was noted across time. This category needs more attention.

3.6. Treatment fidelity

Are the interventions being carried out as described? This question is a very important one. Obviously, if the answer is no,then the other measures, those which deal with treatment effectiveness are uninterpretable. The extent to which researchersand clinicians are adhereing to treatment protocols in critical not only for the interpretation but the comparison betweenstudies. For papers published before 2008, only one of the papers (13%) addressed treatment fidelity but was only based ondirect observation with no formal measurement or assessment. For papers published after that date, 2 (12%) studiesaddressed treatment fidelity and used formal assessments (e.g., Parent Fidelity Tool). An improvement is noted here, but notmuch of one. This area also needs additional attention.

Page 4: Are outcome measures for early intensive treatment of autism improving?

Table 1

Studies published in 2007 or before.

Author(s) Adaptive behavior/

developmental course

Group assignment Core symptoms Psychopathology

and challenging

behaviors

Target haviors Treatment

fidelity

Consumer/family

satisfaction

Bibby, Eikeseth,

Martin, Mudford,

and Reeves (2002)

Bayley, WPPSI-R or

WISC-III, Vineland

– Reynell Developmental

Language Scales

– Speech roblems – –

Lovaas (1987) WISC-R, Stanford-Binet,

PPVT, Bayley, Cattell,

or Leiter

DSM and Criteria of

National Society for

Children and Adults

with Autism

– – Class P cement – –

Magiati, Charman,

and Howlin (2007)

Bayley, Merrill-Palmer,

Vineland

– ADI-R – – – –

Mudford, Martin,

Eikeseth, and

Bibby (2001)

Bayley, WPPSI, Griffiths,

Merrill-Palmer, Vineland

DSM or ICD criteria – – – – –

Sallows and

Graupner (2005)

Bayley, Merrill-Palmer,

WPPSI, Cattell

DSM Reynell Developmental

Language Scales, ADI-R

Personality Inventory

for children, Child

Behavior Checklist

– – –

Sheinkopf and

Siegel (1998)

Merrill-Palmer, Bayley,

WPPSI, Cattell

DSM – – – – –

Smith, Eikeseth,

Klevstrand, and

Lovaas (1997)

Bayley DSM – – Social i eractions,

challen ng behaviors

– –

Smith, Groen,

and Wynn (2000)

Stanford-Binet, Bayley,

Merrill-Palmer, Vineland

Reynell Developmental

Language Scales

Child Behavior

Checklist

– Based on direct

observation

Family Satisfaction

Questionnaire

Note: Autism Diagnostic Interview-Revised (ADI-R); Bayley Scales of Infant and Toddler Development (Bayley); Cattell Infant Intelligence Scales (C tell); Griffiths Mental Development Scales (Griffiths); Leiter

International Performance Scale (Leiter); Merrill-Palmer Scales of Mental Development; Peabody Picture Vocabulary Test (PPVT); Standord-Binet In lligence Scales (Stanford-Binet); Vineland Adaptive Behavior

Scales (Vineland); Wechsler Intelligence Scale for Children (WISC); Wechsler Preschool and Primary Scale of Intelligence (WPPSI).

J.L. M

atso

n,

R.D

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esearch

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(20

14

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Page 5: Are outcome measures for early intensive treatment of autism improving?

Table 2

Studies published after 2007.

Author(s) Adaptive behavior/

developmental course

Group assignment Core symptoms Psychopathology and

challenging behaviors

Target b aviors Treatment fidelity Consumer/family

Satisfaction

Ben Itzchak, Lahat, Burgin,

and Zachor (2008)

Bayley ADI-R ADI-R, ADOS – – – –

Carter et al. (2011) – – – – – – Beach Center Family Quality of

Life Scale

Eikeseth, Klintwall, Jahr,

and Karlsson (2012)

Vineland ICD-10 CARS – – – –

Fava et al. (2011) Griffiths, Vineland – ADOS QABF, ASD-BPC, CBCL Challeng g behaviors Yes Parental Stress Index-Short

Form

Fava et al. (2012) PPVT, Leiter, Vineland ADI-R ADI-R, ADOS, Social

Responsiveness Scale,

Assessment of Basic Language

CBCL Challeng g behaviors – –

Fernell et al. (2011) Vineland, Griffiths, WPPSI-III Paris Autism Research

International Sibpair,

Vineland, Autism Behavior

Checklist, Clinical

Observation

DSM criteria, Autism Behavior

Checklist

– – – –

Granpeesheh, Dixon,

Tarbox, Kaplan, and

Wilke (2009)

– – – – Mastere ehavioral

Objectiv

– –

Howard, Sparkman,

Cohen, Green, and

Stainslaw (2005)

Bayley, WPPSI-R, Stanford-

Binet, Differential Abilities

Scale, Developmental

Assessment of Young Children,

Psychoeducational Profile-

Revised, Vineland

– Merrill-Palmer-Revised Scales

of Development, Reynell

Developmental Language Scales

– – – –

Love, Carr, Almason,

Ingeborg, and

Petursdottier (2009)

Vineland Social Maturity Scale – – – – – –

Magiati, Moss, Charman,

and Howlin (2011)

Bayley, WPPSI-R, WISC-IV,

WPPSI-III, Vineland, British

Picture Vocabulary Scales

ADI-R ADI-R – – – –

O’Connor and Healy

(2010)

British Ability Scales-Revised,

Vineland

– Gilliam Autism Rating Scale-

Revised, Mainstreaming Social

Skills Questionnaire, CARS

Connors’ Rating Scales-Revised

(for ADHD), The Strength and

Difficulty Questionnaire

– – –

Perry et al. (2008) Vineland, Bayley, WPPSI-R CARS, Vineland, Bailey,

WPPSI-R

CARS – – – –

Reed et al. (2013) Leiter-Revised, PPVT, Vineland,

Developmental Behavior

Checklist

DSM Autism Behavior Checklist – – – Questionnaire on Resources and

Stress, Parent–Child

Relationship Inventory

Roberts et al. (2011) Griffiths – ADOS Pragmatics Profile of Everyday

Communication

– – Beach Center Quality of Life

Scale, Parenting Stress Index

Rogers et al. (2012) – ADOS-Toddler, Early

Screening of Autistic Traits

Questionnaire, Modified

Checklist for Autism in

Toddlers

ADOS-Toddler Symptom Checklist 90-R – Parent Fidelity

Tool

Working Alliance Scale for

Interventions with Children

Stock, Mirenda,

and Smith (2013)

Merrill-Palmer-Revised Scales

of Development, Vineland

– Preschool Language Scales CBCL – – Parenting Stress Index

Strauss et al. (2012) Griffiths, Vineland DSM-IV-TR, ADI-R McArthur Communication

Developmental Inventories,

ADOS

Autism Spectrum Disorder-

Behavior Problems for Children

Challeng g behaviors – Parenting Stress Index-Short

Form

Note: Autism Diagnostic Interview-Revised (ADI-R); Autism Diagnostic Observation Schedule (ADOS); Autism Spectrum Disorders- Behavior Problem for Children (ASD-BPC); Bayley Scales of Infant and Toddler

Development (Bayley); Child Autism Rating Scale (CARS); Child Behavior Checklist (CBCL); Griffiths Mental Development Scales (Griffiths); Leit International Performance Scale (Leiter); Peabody Picture

Vocabulary Test (PPVT); Questions About Behavior Function (QABF); Standord-Binet Intelligence Scales (Stanford-Binet); Vineland Adaptive Behavi Scales (Vineland); Wechsler Intelligence Scale for Children

(WISC); Wechsler Preschool and Primary Scale of Intelligence (WPPSI).

J.L. M

atso

n,

R.D

. R

ieske

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(20

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J.L. Matson, R.D. Rieske / Research in Autism Spectrum Disorders 8 (2014) 178–185 183

3.7. Consumer/family satisfaction

The family/caregiver must serve as the person who represents the consumer. They must make a huge emotional,financial, and time commitment. As a result, how the family responds to the intervention is very important. For the paperspublished prior to 2008, only one (13%) paper addressed this topic using the Family Satisfaction Questionnaire. Among thelatter cohort of studies 7 (41%) papers reported on parent reactions. The Beach Center Family Quality of Life Scale and ParentStress Index-Short Form were the most common measures used; reported in 2 and 4 papers, respectively. In addition to themeasures just mentioned, the Questionnaire on Resources and Stress, the Parent–Child Relationship Inventory and theWorking Alliance Scale for Interventions with Children were also used. While this data shows progress, considerable work isyet to be done.

3.8. Side effects

Any intervention has side effects, and EIBI is no exception. However, at present, no studies have addressed this issue. Thefield has advanced to a point, however, that addressing this topic is now overdue. Due to the fact that none of the studiesassessed side effects of EIBI, this was not included in the current tables (see Tables 1 and 2).

4. Conclusions

The EIBI field is now well established and still picking up speed. As this area of study matures, priorities should and dochange. One of the most important of these changes is the improvement in the range, specificity, and variability of measuresused to evaluate treatment outcomes. In this review and analysis, 8 basic areas of assessment have been addressed. It isencouraging that the greatest improvement has been in core symptoms of ASD. More recent EIBI studies now include thismeasure. Adaptive behavior continues to be seen as a priority, and rightly so, and is addressed in most studies.

On a less encouraging note, no studies have addressed side effects, and even for recent studies, less than half addressparent/consumer satisfaction. Much work needs to be done in this area. Another big issue is describing how the diagnosis isdetermined. Only 47% of the most recent papers addressed this issue and for 4–7 papers there was overlap between methodsused for diagnosis and those used to determine treatment effectiveness. Using different measures for these two purposeseliminates the potential confound of dual purpose. Perhaps more importantly, strong change on different measures assessingthe same construct further strengthens the validity of the reported treatment effects. Psychopathology and challengingbehaviors need a good deal more attention. When psychopathology measures were present they often were not tailored tothe ASD population. With respect to challenging behaviors, screening methods were used, but rarely, and a functionalassessment was conducted in only one instance. U.S. federal special education guidelines specify that functional assessmentshould be used for special populations who evince challenging behaviors. That requirement does not seem to beunreasonable for EIBI. Additionally, challenging behaviors should be included in the target behavior category in all instanceswhere they are present. All and all, the trend in assessment methodology for EIBI research is promising, but furtherimprovements are still warranted.

References1

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*Fernell, E., Hedvall, A. , Westerlund, J., Carlsson, L., Eriksson, M., Olsson, M., et al. (2011). Early intervention in 208 Swedish preschoolers with autism spectrumdisorder. A prospective naturalistic study. Research in Developmental Disabilities, 32, 2092–2101.

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1 References marked with an * indicate studies included in the review.

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*Granpeesheh, D., Dixon, D. R., Tarbox, J., Kaplan, A. M., & Wilke, A. E. (2009). The effects of age and treatment intensity on behavioral intervention outcomes forchildren with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 3, 1014–1022.

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