Parent-directed, intensive early intervention for children with pervasive developmental disorder

Abstract

We examined parent-directed, intensive early intervention for children with Pervasive Developmental Disorder. Children’s parents recruited paraprofessional therapists and requested consultations on how to implement the UCLA treatment model in their homes (Smith & Lovaas, 1998). Parents and therapists then received six one-day workshops over a five-month period, with additional consultations for the next 2–3 years. Six boys participated (intake age 35–45 months, intake IQ 45–60). The study addressed 1) the children’s skill acquisition during the first five months of treatment; 2) outcome 2–3 years later; 3) treatment quality; and 4) parents’ impressions. Five of 6 children rapidly acquired skills when treatment began, but only 2 clearly improved on standardized tests at the 2–3 year follow-up. Therapists usually employed correct treatment procedures but were less consistent than therapists employed at a clinic. Parents reported high satisfaction with treatment. These mixed results highlight the need for multimodal assessment of parent-directed treatment.

Introduction

Many hundreds of studies have documented the effectiveness of applied behavior analytic treatment (ABA) for children with autism and other pervasive developmental disorders (PDD; Matson, Benavidez, Compton, Paclawskyj, & Baglio, 1996). Moreover, since the 1980s, researchers have indicated that ABA may yield large benefits when implemented intensively (25+ hours per week) and early (during the preschool years). For example, investigators have reported average gains of approximately 20 points in IQ Anderson et al 1987, Lovaas 1987, Harris et al 1991 and other standardized test scores Harris et al 1990, McEachin et al 1993, as well as less restrictive school placements Fenske et al 1985, Lovaas 1987.

Though investigators have emphasized the need for replicating these outcomes in studies with improved methodologies (Smith, 1999), existing research, combined with case studies that have presented treatment in a format accessible to a general audience (e.g., Maurice, 1993), has led to a dramatic rise in requests from families for intensive, early ABA treatment. This demand has posed at least two major practical problems for service providers and families. First, the demand far exceeds the supply of professionals who have the training and experience necessary to provide high-quality treatment. Second, because of the intensity of services, it is prohibitively expensive to employ professionals to deliver all of the treatment. The most common solution to these problems has been for professionals to assist parents in setting up their own treatment programs. In such programs, discussed in detail in a manual edited by Maurice (1996), parents recruit paraprofessional therapists (often college students) to provide treatment for their children. The professional then trains the parents and therapists in ABA techniques and develops a treatment plan for the child. Subsequently, the professional conducts follow-up consultations to provide further training and update the treatment plan.

By delegating much of the responsibility for treatment to parents, professionals can increase the number of families they serve. By relying on paraprofessionals to implement the treatment, they can keep costs down. Given that parents and paraprofessionals can be highly effective in implementing ABA techniques (e.g., Anderson et al 1987, Lovaas 1987), parent-directed programs with paraprofessional therapists may substantially enhance children’s functioning. Despite these potential advantages, however, it is essential to evaluate such programs carefully. Factors such as extensive demands on parents, infrequent training from consultants, reliance on therapists who may have little background in learning theory and ABA, and high staff turnover may reduce treatment effectiveness, relative to professionally administered treatment.

In the only published study on parent-directed, intensive ABA treatment to date, Sheinkopf and Siegal (1998) compared 11 preschoolers with PDD who were receiving this treatment to 11 similar children who were enrolled in classes in their local public schools. Twenty months after treatment onset, after receiving a mean of 27 h of treatment per week, the ABA group displayed much higher intellectual functioning than the comparison group (M IQ = 90 vs. 64), as well as fewer parent-reported symptoms of autism (M = 7.5 vs. 8.6). Though in need of replication by other investigators, these results yielded important evidence for the effectiveness of parent-directed programs. However, as the investigators acknowledged, the study contained limitations. Of note, the investigators did not directly observe treatment and hence could not directly assess the quality of therapy or children’s rate of progress at different points during the intervention. Moreover, they did not evaluate parents’ reactions to the treatment.

The present study was designed to take a closer look at programs run by parents who requested consultation on one ABA program for preschoolers with PDD: the UCLA treatment model developed by Lovaas and colleagues (Smith & Lovaas, 1998). The study addressed 1) the progress made by 6 children with PDD at the beginning of treatment, 2) treatment quality, and 3) parents’ impressions of the treatment. The investigation also included a follow-up assessment of children and families 2–3 years after treatment onset.