Research in Autism Spectrum Disorders 7 (2013) 475479

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Research in Autism Spectrum Disorders

Journal homepage: http://ees.elsevier.com/RASD/default.asp

What is the evidence for long term effects of early autism interventions?
Johnny L. Matson *, Matthew J. Konst
Louisiana State University, United States

A R T I C L E I N F O

A B S T R A C T

Article history: Received 29 October 2012 Accepted 26 November 2012 Keywords: EIBI Autism Follow-up Treatment outcomes Infants

At this point there is sufcient research to demonstrate the efcacy of Early Intensive Behavior Interventions (EIBI) for young children with autism spectrum disorders (ASDs). However, also of great importance is the value of these early efforts over time. The purpose of this review was to assess existing EIBI papers with respect to follow-up and overall long term efcacy of intervention. Twenty-two treatment studies were reviewed which used the term follow-up. Of these, 19 included actual post-test data. Only 3 followed children after termination of treatment. Thus, a major problem with the current EIBI literature is that little can be said about the impact of these treatments long term. Details of these studies and their implications are discussed. 2012 Elsevier Ltd. All rights reserved.

Autism spectrum disorder (ASD) is one of the most common and chronic of childhood disorders, and one of the most debilitating long term (Baghdadli et al., 2012; Gardiner & Iarocci, 2012; Mashal & Kasirer, 2012; Matson, Boisjoli, Hess, & Wilkins, 2010; Matson, Hess, & Boisjoli, 2010). Core symptoms include communication and social decits, along with repetitive and stereotyped behaviors (Horovitz & Matson, 2010; Matson, Dempsey, & Fodstad, 2009; Nygren et al., 2012; Smith & Matson, 2010c). A variety of other co-occurring forms of psychopathologies are common and include AttentionDecit/Hyperactivity Disorder (ADHD), anxiety, and depression (LoVullo & Matson, 2009; Matson, Boisjoli, et al., 2010; Matson & Neal, 2009; Rumpf, Kamp-Becker, Becker, & Kauschke, 2012; Smith & Matson, 2010a). Challenging behaviors, intellectual disability, and seizure disorders are also evident at high rates in ASD populations (Matson, Dempsey, & Fodstad, 2009; Smith & Matson, 2010b). Fortunately, methods are available to treat many of these issues and the research on the topic is growing (Cavalari & Romanczyk, 2012; Eikeseth, Klintwall, Jahr, & Karlsson, 2012; Grifth, Fletcher, & Hastings, 2012; Palmen, Didden, & Lang, 2012). A variety of factors have and continue to be evaluated to establish the efcacy of Early Intensive Behavioral Interventions (EIBI). While a few sporadic efforts have been made to establish other early treatment options, none compare to EIBI at the time of this review. Thousands of studies on applied behavior analysis have been published establishing the components of EIBI treatment packages. The EIBI treatment packages have been tested in a number of studies and have been found to be superior to no treatment, or other forms of treatment (Makrygianni & Reed, 2010; Matson, Tureck, Turygin, Beighley, & Rieske, 2012). EIBI treatments consist of 2040 h of intervention per week for approximately one year. The children treated with EIBI are typically 23 years of age at the time treatment is initiated. Professionals have argued that EIBI is cost effective longitudinally given that improved skills mean a decreased need for programs and supports as the child ages. However, this assumption is predicated on the notion that the achieved gains will be maintained long term. A variety of factors have been associated with treatment efcacy. Hastings and Symes (2002) for example found that quality of therapist performance was related to variability in treatment outcomes. Based on personal observations, we

* Corresponding author at: Department of Psychology LSU, Baton Rouge, LA 70803, United States. E-mail address: Johnmatson@aol.com (J.L. Matson). 1750-9467/$ see front matter 2012 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.rasd.2012.11.005

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believe this to be one of the most concerning, important, and variable factors in EIBI. Treatment integrity has become a eld of study in and of itself, but the topic does not receive enough attention in the current autism literature. A host of factors must be addressed in future EIBI research. Issues surrounding the implementation of EIBI include: what curriculum to use, whether the program should be home or school based, how and what methods should be used to assess treatment effects, what age treatment should start, how many hours of treatment should be provided, and longevity of treatment (Fava et al., 2012; Granpeesheh, Dixon, Tarbox, Kaplan, & Wilke, 2009; Matson, 2007). Methods to assess treatment integrity would obviously need to be implemented to monitor these issues. One of the most critical issues related to the EIBI literature pertains to how lasting the changes prove to be. This factor is critical for future assessment and treatment once EIBI has been discontinued. This type of data will dictate if continued intervention is needed, and if so, how much intervention and when. Also, data of this sort would help establish whether the notion of a cure, which of course is controversial, is a possibility using EIBI. Some have made this claim, but without adequate follow-up this theory cannot be tested. The purpose of the present study then, was to review existing studies which included follow-up data after cessation of EIBI intervention, and to assess the current status of research on the topic. 1. Follow-up Follow-up in the EIBI autism literature appears to be in the eye of the beholder. Traditionally, follow-up has been conceptualized as a reassessment of treatment effects at a given point following treatment cessation. However, in practice most studies of EIBI have tended to report what the authors characterize as follow-up at the time at which treatment is concluded. In some instances the intervention schedule has been thinned toward the end of the intervention phase (e.g., 10 h per week in place of 40 h). Conversely, treatment may continue at an intense pace for non-responders while intervention for those who respond is thinned or stopped. The Lovaas (1987) paper is the most visible and cited of the EIBI studies to date. One could argue to some extent that this paper set the precedence for how follow-up is dened for EIBI. Lovaas (1987) conducted his study over two years. During this time, one sample group received 40 h per week of individualized treatment. A second group received 10 h of treatment per week. Children who later entered regular kindergarten or rst grade who were previously on 40 h of intervention per week (responders) had intervention per week cut back to 10 h or less. In the latter case or minimal consultation relationship was maintained with the parent. Children who were not improving received 40 h of one-to-one treatment for six years (more than 14,000 h of intervention). Thus, the follow-up is largely a post-test. Of the 22 EIBI articles reviewed, 19 used this posttest assessment method while only three had a true follow-up. The shortest post-test was six months, while the longest was a true follow-up study of up to nine years (Akshoomoff, Stahmer, Corsello, & Mahrer, 2010). Two studies had a six month post-test/follow-up; two studies were given the post-test/follow-up assessment at eight months after treatment started. Seven studies were conducted at one year, one study had post-test/follow-up at 14 months, three studies had a two year post-test/follow-up, one paper had a three year post-test/follow-up measure, and two papers had a post-test/follow-up at four years. Two other research groups reported considerable variability in the time between pre-test and post-test/followup. In one paper, post-test/follow-up varied from one to two years, while the second paper had a post-test/follow-up data from 10 months to three years, nine months. 2. Specic studies 2.1. Post-test/follow-up Strauss et al. (2012) measured their EIBI intervention after six months of treatment. They used the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS) to measure core symptoms of ASD, the Vineland Adaptive Behavior Scale (VABS) to measure adaptive behavior and the McArthur Communication Development Inventory to measure receptive and expressive communication, the frequency of challenging behaviors and interestingly, a measure of parental stress and ratings of parent treatment delity. Fava et al. (2011) report a study with similar methodology. In both papers marked gains across all of the dependent measures were noted for the EIBI groups. Karanth, Shaista, and Srikanth, 2010 in their eight month post-test/follow-up assessed a range of developmental skills and milestones including gross and ne motor abilities, activities of daily living, receptive and expressive language as well as social, cognitive and emotional behaviors. They also assessed core symptoms of autism using the Childhood Autism Rating Scale (CARS). Additionally, data on parents perceptions of progress were also obtained. We believe this is an important development and a dimension that should be consistently addressed in future studies. The other eight month long study was by Stahmer, Aksshoomoff, and Cunningham (2011). They also assessed for developmental level, communication skills, and adaptive behavior. The Childhood Behavior Checklist, a general measure of child psychopathology was also used, but no test specic to ASD was employed. This latter omission is particularly problematic given that the primary focus of the intervention is to moderate core symptoms of ASD. As noted, the most common length of time for the post-test/follow-up has been one year. This period of time, like all the other post-test time points is largely arbitrary. To establish more data based post-test/follow-up data points, client characteristics which effect diagnosis and better establishing the most efcacious amount of treatment need to be established. In a broader context Lovaas (1987) most likely had it right. Staggering how much intervention each child gets

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based on how well they respond to intervention will lead to better long term development for the child with ASD. The algorithm is likely to be complex given the large number of factors which can affect treatment outcomes. The one year period is nonetheless a pragmatic choice, given school cycles which run by the year. Zachor and Ben-Itzchak (2010) used a number of post-test/follow-up measures to evaluate success. To measure core symptoms of ASD, the ADOS and ADI-R were used. Developmental milestones in the areas of communication, language, language comprehension, daily living skills, motor skills, visual perception, and social behavior were assessed using the VABS as well as the Mullen Scales of Early Learning (MSEL). These authors used similar measurement methods for two other papers on EIBI (Ben-Itzchak, Lahat, Burgin, & Zachor, 2008; Ben-Itzchak & Zachor, 2007). Eikeseth et al. (2012) also used a similar assessment strategy employing the CARS and VABS to measure core symptoms of ASD, and adaptive behavior and development. As with the other EIBI papers reviewed, the authors reported positive results for their treatment. Roberts et al. (2011) also used a one year post-test/follow-up. They measured communication, social skills, adaptive functioning, and psychopathology. No measures of core symptoms of ASD were used. Importantly, the authors did conduct extensive evaluations of the childrens primary care givers. Levels of stress, quality of life, and how competent they felt in managing their children were assessed. Some authors describe less ambitious, more focused goals for their EIBI programs. In these types of programs, focusing on a few specic skills means a narrower range of behaviors are addressed. Smith et al. (2010) measured expressive and receptive language only for their one year post-test/follow-up. Similarly, Wallace and Rogers (2010) conversely chose to assess social communication and parental skills. In one study, an average of 14 months post-test/follow-up was used (Howard, Sparkman, Cohen, Green, & Stainislaw, 2005). They used the Bayley Scales of Infant Development-Second Edition (BSID-II), the Merrill-Palmer Scale of Mental Tests which measures visuo-spatial skills, the Reynell Developmental Language Scales and the VABS. No measures of core ASD symptoms were included. Strain and Bovey (2011) conducted their assessment of treatment effectiveness two years after children with ASD had entered their treatment program. As with the majority of the most recently published EIBI studies, they assessed cognitive skills, language, social behaviors, challenging behaviors, and core symptoms of ASD. Another study reporting post-test/ follow-up at two years was reported by Weiss (1999). She used the CARS and VABS as her primary outcome measures. In another EIBI study conducted in the United Kingdom (UK), cognitive ability, language skills, adaptive behavior, and core ASD symptoms were evaluated two years after the initiation of treatment (Magiati, Charman, & Howlin, 2007). Fernell et al. (2011) also used a two year post-test/follow-up. They used measures of core symptoms of ASD, the Diagnosis of Social and Communication Disorders (DISCO), an intelligence quotient (IQ), the Autistic Behaviour Checklist, and the VABS. Eikeseth, Smith, Jahr, and Eldevik (2007) report utilized a three year post-test/follow-up. Their approach was to assess for IQ, adaptive functioning, challenging behaviors, and social skills. No measures of core symptoms of ASD were used. As we have pointed out the omission of this latter measure makes it difcult to judge the primary purpose of the paper. A four year post-test/follow-up study was conducted with one child who received EIBI for three years and a fourth year of less intensive intervention. In addition to cognitive and language measures, the authors took a social validity measure, they employed a common sense approach of evaluating the childs ability to function in a regular school kindergarten classroom. Sallows and Graupner (2005) also report outcome measures after four years of treatment. They measured cognitive and language development, adaptive, social, and academic skills. This study also failed to include measures of core symptoms of ASD. Two studies were reviewed where the post-test/follow-up varied from child to child based on how quickly they responded to treatment. While this approach undoubtedly provides for a more tailored intervention, it also biases the outcome measures toward more positive ndings. This observation is based on the notion that treatment is terminated when the child has become a treatment responder. Valenti, Cerbo, Masedu, De Caris, and Sorge (2010) provided outcome assessments of one to two years. The VABS and a parent satisfaction checklist were used to evaluate success. OConnor and Healy (2010) conversely conducted performance outcome assessments between 10 months to three years, nine months. They used a range of assessment methods. These instruments included measures of IQ (The British Ability Scales: Second Edition), adaptive behavior (VABS), core ASD symptoms (Gilliam Autism Rating Scale: Second Edition), social skills (The Mainstreaming Social Skills Questionnaire), and ADHD (Connors Rating Scales Revised). 2.2. Follow-up A much smaller subset of EIBI papers have used true follow-up data. Three studies were located using this experimental design. One study had a one year follow-up, one study had a two year follow-up and one study reported follow-up that ranged from one to nine years. Richards, Walstab, Wright-Rossi, Simpson, and Reddihough (2009) conducted a true follow-up of one year after treatment was terminated for a home based program in Australia. Developmental milestones were measured with the Bayley Scales of Infant Development. IQ was assessed with the Wechsler Preschool and Primary Scale of Intelligence-Revised (WPPSI-R), and general psychological adjustment was measured with the Preschool Behaviour Checklist, the Bayley Behaviour Rating Scale, and the Behaviour Screening Questionnaire. Measures of family stress and adjustment were also employed. Similarly, in a UK study, a two year follow-up was conducted. This follow-up was two years after treatment had been terminated (Kovshoff, Hastings, & Remington, 2011). Finally, in a retrospective study, follow-up of one to nine years was made for 29 children who

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had been treated when they were two to three years old. Core symptoms of ASD, socialization, cognition, language, and parental stress were assessed (Akshoomoff et al., 2010). For these three studies positive gains were evident, but not universal. 3. Conclusions The major take away from our review and analysis of EIBI studies is that EIBI programs based on applied behavior analysis work for most children with ASD. Additionally, this model is superior to other methods that have been tried across the board. That is the good news. The bad news is that the vast majority of studies are mislabeled as follow-up when in fact they are post-test data. These terms mean much different things. Three actual follow-up studies were reviewed. There may be a few more, but that does not change the fact that data on the topic are at best, sparse. Additionally, from the papers we reviewed, some of the data was collected retrospectively versus data that was built into the initial experimental design. This latter approach is preferable, since it allows for better control of methods, and procedures, as well as extraneous variables that may distort the results. Claims that intensive applications of applied behavior analysis are effective for markedly improving most children with ASD and the comorbid problems that often accompany the diagnosis are valid. However, claiming to cure, or suggesting that long term gains, result are not supported by the data at this point. As a result, one of the greatest, if not the greatest priority in EIBI research at this point should be establishing better, more, and longer follow-up data that is designed into the study at the outset. In 2007 the rst author pointed out that most EIBI studies did not include measures specic to core symptoms of ASD in their outcomes (Matson, 2007). That problem has been remedied in most studies in recent years. This change in pre-test/ post-test analysis is a welcome and important change. Large amounts of money being spent on EIBI and the likelihood is that resources allocated to this intervention will only increase further. Thus, factors such as the methods and measures used to evaluate efcacy and for charting progress over time need to be addressed much more directly in the future. It is incumbent on researchers to develop methods and procedures that can both justify this large expenditure of resources and to further enhance the efciency and effectiveness of treatments. References
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