Are outcome measures for early intensive treatment of autism improving?

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

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Research in Autism Spectrum Disorders Journal homepage: http://ees.elsevier.com/RASD/default.asp

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

A B S T R A C T

Article history: Received 14 November 2013 Accepted 21 November 2013

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. ß 2013 Elsevier Ltd. All rights reserved.

Keywords: Autism Spectrum Disorders Early Intensive Behavioral Intervention (EIBI) Methodology Assessment

Contents 1. 2. 3.

4.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Early Intensive Behavioral Interventions (EIBI) . . . . Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Adaptive behavior/developmental course . . . 3.1. 3.2. Group assignment . . . . . . . . . . . . . . . . . . . . . Core symptoms. . . . . . . . . . . . . . . . . . . . . . . . 3.3. Psychopathology and challenging behaviors. 3.4. Target behaviors . . . . . . . . . . . . . . . . . . . . . . . 3.5. 3.6. Treatment fidelity. . . . . . . . . . . . . . . . . . . . . . Consumer/family satisfaction. . . . . . . . . . . . . 3.7. Side effects . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.8. Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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* 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 ß 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.rasd.2013.11.006

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

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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 a result of these factors there has been a concerted effort by many researchers to develop methods and procedures that would enhance the reliability, consistency, and validity of assessment. This problem is compounded by the complexity of the overall 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 further complicated 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 Intensive Behavioral 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 writing they are easily the most studied and utilized treatment in the field of ASD. As a result, it has been argued that a comprehensive 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 to outcome measures. The outcome methods used define what can be concluded about the interventions that are employed and what constitutes effective. A number of content areas should be evaluated. These areas include: (1) measures of adaptive behavior and development; (2) using separate measures for group assignment and for evaluating treatment effectiveness; (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 papers published prior to 2008, and a second cohort of papers published from 2008 to 2013 was evaluated on each of these parameters. 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 what assessment 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 25 EIBI studied over the span of 1987–2013 were sampled that measured outcomes. The papers were separated into a group of 8 papers published in 2007 or before and 17 papers published after 2007. This approach was followed to gauge whether the methods used as a means of assessing EIBI studies have improved since the discussion of methodological shortcomings in this 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 this date, 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 papers prior to 2008, 6 (75%) used some variant of the Weschler Scales or the Stauford-Binet, with or without adaptive behavior measures. For the latter group of studies, 6 (33%) papers provided standardized I.Q. tests, and for two studies, the Leiter International Performance Scale (Leiter) and the Peabody Picture Vocabulary Test (PPVT) were used. This trend is encouraging. 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 such as the Leiter or PPVT are preferred. Thus, on this first criteria, improvement was noted even though fewer studies used measures 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 the person had been diagnosed with autism or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), or what professional qualifications the practitioner possessed. Unfortunately, having a license as a physician or psychologist does not ensure a reliable or valid diagnosis. Prior to 2008, 5 (63%) studies reported the use of diagnostic criteria; typically DSM. No study 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 is much 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 include standardized measures of ASD. This issue was very problematic since the primary objective of intervention for ASD is to improve symptoms of ASD. This point seems straight forward. In the early papers, 1 study (13%) used standardized measures of ASD. The Reynell Developmental Language Scales measures a subset of ASD symptoms and was used in 3 studies, but really does not qualify. For the later studies, 12 (71%) papers describe standardized tests of core symptoms of ASD. One study used the Preschool Language Scales; however, this study did not qualify. These data are very encouraging in that major improvements in measurement of core symptoms of ASD, the most important criteria, are substantial. Nonetheless, at this point 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 challenging behaviors (Hattier, Matson, Belva, & Horovitz, 2011; Matson & Nebel-Schwalm, 2007; Worley & Matson, 2011). ADHD, for example 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 in both instances. The Personality Inventory for Children was used in one case. Neither of these scales was designed for use with an ASD population. For more recent studies, 7 (41%) employed measures of psychopathology. Two studies used scales specific to this population; the Autism Spectrum Disorders–Behavior Problems for Children. These were the only two papers that systematically addressed challenging behaviors. As with the other categories addressed, the later studies have increased the 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 method adds 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 observed behaviors. Among studies published prior to 2008, 3 (38%) reported data that could be included in this category. One study assessed 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 the latter is used to screen for a broad range of potential behaviors, while the former is a sensitive measure of a few particular problematic behaviors (subjectively determined without a standardized test). A second study used speech problems as target behaviors. The third example was in Lovaas’s (1987) original paper and dealt with the type of class placement the child received; regular versus special education placement, for example, would denote greater improvement. No EIBI study since has used this method, nor is that being advised here. Many factors in addition to improvement in autism symptoms may effect placement. Among the newer studies, 3 (38%) papers addressed this category on challenging behaviors. Thus, unlike the 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 researchers and clinicians are adhereing to treatment protocols in critical not only for the interpretation but the comparison between studies. For papers published before 2008, only one of the papers (13%) addressed treatment fidelity but was only based on direct observation with no formal measurement or assessment. For papers published after that date, 2 (12%) studies addressed treatment fidelity and used formal assessments (e.g., Parent Fidelity Tool). An improvement is noted here, but not much of one. This area also needs additional attention.

Table 1 Studies published in 2007 or before. Adaptive behavior/ developmental course

Group assignment

Core symptoms

Psychopathology and challenging behaviors

Target behaviors

Treatment fidelity

Consumer/family satisfaction

Bibby, Eikeseth, Martin, Mudford, and Reeves (2002) Lovaas (1987)

Bayley, WPPSI-R or WISC-III, Vineland

–

Reynell Developmental Language Scales

–

Speech Problems

–

–

WISC-R, Stanford-Binet, PPVT, Bayley, Cattell, or Leiter

–

–

Class Placement

–

–

Magiati, Charman, and Howlin (2007) Mudford, Martin, Eikeseth, and Bibby (2001) Sallows and Graupner (2005)

Bayley, Merrill-Palmer, Vineland Bayley, WPPSI, Griffiths, Merrill-Palmer, Vineland

DSM and Criteria of National Society for Children and Adults with Autism –

ADI-R

–

–

–

–

DSM or ICD criteria

–

–

–

–

–

Bayley, Merrill-Palmer, WPPSI, Cattell

DSM

Reynell Developmental Language Scales, ADI-R

–

–

–

Sheinkopf and Siegel (1998) Smith, Eikeseth, Klevstrand, and Lovaas (1997) Smith, Groen, and Wynn (2000)

Merrill-Palmer, Bayley, WPPSI, Cattell Bayley

DSM

–

Personality Inventory for children, Child Behavior Checklist –

–

–

–

DSM

–

–

Social interactions, challenging behaviors

–

–

Reynell Developmental Language Scales

Child Behavior Checklist

–

Based on direct observation

Family Satisfaction Questionnaire

Stanford-Binet, Bayley, Merrill-Palmer, Vineland

Note: Autism Diagnostic Interview-Revised (ADI-R); Bayley Scales of Infant and Toddler Development (Bayley); Cattell Infant Intelligence Scales (Cattell); Griffiths Mental Development Scales (Griffiths); Leiter International Performance Scale (Leiter); Merrill-Palmer Scales of Mental Development; Peabody Picture Vocabulary Test (PPVT); Standord-Binet Intelligence Scales (Stanford-Binet); Vineland Adaptive Behavior Scales (Vineland); Wechsler Intelligence Scale for Children (WISC); Wechsler Preschool and Primary Scale of Intelligence (WPPSI).

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Author(s)

181

182

Table 2 Studies published after 2007. Adaptive behavior/ developmental course

Group assignment

Core symptoms

Psychopathology and challenging behaviors

Target behaviors

Treatment fidelity

Consumer/family Satisfaction

Ben Itzchak, Lahat, Burgin, and Zachor (2008) Carter et al. (2011)

Bayley

ADI-R

ADI-R, ADOS

–

–

–

–

–

–

–

–

–

–

Eikeseth, Klintwall, Jahr, and Karlsson (2012) Fava et al. (2011)

Vineland

ICD-10

CARS

–

–

–

Beach Center Family Quality of Life Scale –

Griffiths, Vineland

–

ADOS

QABF, ASD-BPC, CBCL

Challenging behaviors

Yes

Fava et al. (2012)

PPVT, Leiter, Vineland

ADI-R

CBCL

Challenging behaviors

–

Parental Stress Index-Short Form –

Fernell et al. (2011)

Vineland, Griffiths, WPPSI-III

–

–

–

–

Granpeesheh, Dixon, Tarbox, Kaplan, and Wilke (2009) Howard, Sparkman, Cohen, Green, and Stainslaw (2005)

–

Paris Autism Research International Sibpair, Vineland, Autism Behavior Checklist, Clinical Observation –

ADI-R, ADOS, Social Responsiveness Scale, Assessment of Basic Language DSM criteria, Autism Behavior Checklist

–

–

Mastered Behavioral Objectives

–

–

Bayley, WPPSI-R, StanfordBinet, Differential Abilities Scale, Developmental Assessment of Young Children, Psychoeducational ProfileRevised, Vineland Vineland Social Maturity Scale

–

Merrill-Palmer-Revised Scales of Development, Reynell Developmental Language Scales

–

–

–

–

–

–

–

–

–

–

ADI-R

ADI-R

–

–

–

–

O’Connor and Healy (2010)

Bayley, WPPSI-R, WISC-IV, WPPSI-III, Vineland, British Picture Vocabulary Scales British Ability Scales-Revised, Vineland

–

–

–

Vineland, Bayley, WPPSI-R

–

–

–

Reed et al. (2013)

Autism Behavior Checklist

–

–

–

Roberts et al. (2011)

Leiter-Revised, PPVT, Vineland, Developmental Behavior Checklist Griffiths

CARS, Vineland, Bailey, WPPSI-R DSM

Connors’ Rating Scales-Revised (for ADHD), The Strength and Difficulty Questionnaire –

–

Perry et al. (2008)

Gilliam Autism Rating ScaleRevised, Mainstreaming Social Skills Questionnaire, CARS CARS

–

ADOS

–

–

Rogers et al. (2012)

–

ADOS-Toddler

–

Parent Fidelity Tool

Stock, Mirenda, and Smith (2013) Strauss et al. (2012)

Merrill-Palmer-Revised Scales of Development, Vineland Griffiths, Vineland

ADOS-Toddler, Early Screening of Autistic Traits Questionnaire, Modified Checklist for Autism in Toddlers –

Pragmatics Profile of Everyday Communication Symptom Checklist 90-R

Questionnaire on Resources and Stress, Parent–Child Relationship Inventory Beach Center Quality of Life Scale, Parenting Stress Index Working Alliance Scale for Interventions with Children

Preschool Language Scales

CBCL

–

–

Parenting Stress Index

McArthur Communication Developmental Inventories, ADOS

Autism Spectrum DisorderBehavior Problems for Children

Challenging behaviors

–

Parenting Stress Index-Short Form

Love, Carr, Almason, Ingeborg, and Petursdottier (2009) Magiati, Moss, Charman, and Howlin (2011)

DSM-IV-TR, ADI-R

Note: Autism Diagnostic Interview-Revised (ADI-R); Autism Diagnostic Observation Schedule (ADOS); Autism Spectrum Disorders- Behavior Problems 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); Leiter International Performance Scale (Leiter); Peabody Picture Vocabulary Test (PPVT); Questions About Behavior Function (QABF); Standord-Binet Intelligence Scales (Stanford-Binet); Vineland Adaptive Behavior Scales (Vineland); Wechsler Intelligence Scale for Children (WISC); Wechsler Preschool and Primary Scale of Intelligence (WPPSI).

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

Author(s)

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

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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 papers published prior to 2008, only one (13%) paper addressed this topic using the Family Satisfaction Questionnaire. Among the latter cohort of studies 7 (41%) papers reported on parent reactions. The Beach Center Family Quality of Life Scale and Parent Stress Index-Short Form were the most common measures used; reported in 2 and 4 papers, respectively. In addition to the measures just mentioned, the Questionnaire on Resources and Stress, the Parent–Child Relationship Inventory and the Working Alliance Scale for Interventions with Children were also used. While this data shows progress, considerable work is yet 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. The field has advanced to a point, however, that addressing this topic is now overdue. Due to the fact that none of the studies assessed 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 do change. One of the most important of these changes is the improvement in the range, specificity, and variability of measures used to evaluate treatment outcomes. In this review and analysis, 8 basic areas of assessment have been addressed. It is encouraging that the greatest improvement has been in core symptoms of ASD. More recent EIBI studies now include this measure. 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 address parent/consumer satisfaction. Much work needs to be done in this area. Another big issue is describing how the diagnosis is determined. Only 47% of the most recent papers addressed this issue and for 4–7 papers there was overlap between methods used for diagnosis and those used to determine treatment effectiveness. Using different measures for these two purposes eliminates the potential confound of dual purpose. Perhaps more importantly, strong change on different measures assessing the same construct further strengthens the validity of the reported treatment effects. Psychopathology and challenging behaviors need a good deal more attention. When psychopathology measures were present they often were not tailored to the ASD population. With respect to challenging behaviors, screening methods were used, but rarely, and a functional assessment was conducted in only one instance. U.S. federal special education guidelines specify that functional assessment should be used for special populations who evince challenging behaviors. That requirement does not seem to be unreasonable for EIBI. Additionally, challenging behaviors should be included in the target behavior category in all instances where they are present. All and all, the trend in assessment methodology for EIBI research is promising, but further improvements are still warranted. References1 Barton, E. E., Lawrence, K., & Deurloo, F. (2012). Individualizing interventions for young children with autism in preschool. Journal of Autism and Developmental Disorders, 42(6), 1205–1217. *Ben Itzchak, E., Lahat, E., Burgin, R., & Zachor, A. (2008). Cognitive, behavior and intervention outcome in young children with autism. Research in Developmental Disabilities, 29(5), 447–458. *Bibby, P., Eikeseth, S., Martin, N. T., Mudford, O. C., & Reeves, D. (2002). Progress and outcomes for children with autism receiving parent-managed intensive interventions: Erratum. Research in Developmental Disabilities, 23(1), 79–104. Boyd, B. A., Odom, S. L., Humphreys, B. P., & Sam, A. M. (2010). Infants and toddlers with autism spectrum disorder: Early identification and early intervention. Journal of Early Intervention, 32(2), 75–98. *Carter, M., Roberts, J., Williams, K., Evans, D., Parmenter, T., Silove, N., et al. (2011). Interventions used with an Australian sample of preschool children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 5(3), 1033–1041. Eikeseth, S. (2009). Outcome of comprehensive psycho-educational interventions for young children with autism. Research in Developmental Disabilities, 30, 158– 178. *Eikeseth, S., Klintwall, L., Jahr, E., & Karlsson, P. (2012). Outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and kindergarten settings. Research in Autism Spectrum Disorders, 6(2), 829–835. *Fava, L., Strauss, K., Valeri, G., D’Elia, L., Arima, S., & Vicari, S. (2011). The effectiveness of a cross-setting complementary staff- and parent-mediated Early Intensive Behavioral Intervention for young children with ASD. Research in Autism Spectrum Disorders, 5(4), 1479–1492. *Fava, L., Vicari, S., Valeri, G., D’Elia, L., Arima, S., & Strauss, K. (2012). Intensive behavioral intervention for school-aged children with autism: Una Breccia nel Muro (UBM) – A comprehensive behavioral model. Research in Autism Spectrum Disorders, 6, 1273–1288. *Fernell, E., Hedvall, A˚. , Westerlund, J., Carlsson, L., Eriksson, M., Olsson, M., et al. (2011). Early intervention in 208 Swedish preschoolers with autism spectrum disorder. A prospective naturalistic study. Research in Developmental Disabilities, 32, 2092–2101. Fodstad, J. C., Matson, J. L., Hess, J., & Neal, D. (2009). Social and communication behaviours in infants and toddlers with autism and pervasive developmental disorder-not otherwise specified. Developmental Neurorehabilitation, 12(3), 152–157. Gould, E., Dixon, D. R., Najdowski, A. C., Smith, M. N., & Tarbox, J. (2011). A reivew of assessment for determining the content of Early Intensive Behavioral Intervention programs for Autism Spectrum Disorders. Research in Autism Spectrum Disorder, 5, 990–1002.

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

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