Evaluation of a parent-based behavioral intervention program for children with autism in a low-resource setting.

BACKGROUND: Intensive behavioral intervention programs are recommended for children with autism. However, in resource-constraint settings, such programs are largely inaccessible, and there is an urgent need for development of low-cost interventions. AIM: To evaluate the efficacy of a parent-based behavioral intervention program in Indian autistic children.
MATERIALS AND METHODS: Sixteen children with autistic disorder undergoing the intervention for at least six months were enrolled. The mean development, social, expressive, and receptive language quotients, and the Childhood Autism Rating Scale (CARS) and Autism Behavior Checklist (ABC) scores were compared before and after the intervention.
RESULTS: The average duration of therapy was 19.5±11.78 months. There was a significant improvement in the development quotient (P=0.015), social quotient (P=0.004), expressive language quotient (P=0.03), CARS (P=0.001), and ABC (P=0.014) scores.
CONCLUSION: Parent-based behavioral intervention programs have a promising role in management of children with autism in resource-constraint settings.

Introduction

Behavioral interventions are currently the most successful treatment for autism.[1] In low-resource settings such as India, the center-based intensive behavioral intervention programs are largely inaccessible and unaffordable to parents. As there are an estimated 2.3 million children with autistic spectrum disorder in India, there is an urgent need for development of low-cost interventions.[2] In this preliminary study, we evaluated the efficacy of a parent-based intervention program in autistic children.

Materials and Methods

This was a retrospective review of children with Autistic Disorder (AD) attending the Child Development Center (CDC) of Maulana Azad Medical College and associated Lok Nayak Hospital, New Delhi. CDC is a referral center for children with behavioral and developmental disorders. It has a team of Pediatricians, Clinical Psychologists, Speech Therapists, Special Educators, and Occupational Therapists, and provides comprehensive care to children with developmental disabilities.

For this study, children aged 6 years or less, diagnosed with AD as per the Diagnostic and Statistical Manual, 4th Edition, Text Revision (DSM-IV-TR) criteria, and undergoing regular interventions at CDC for at least last six months were enrolled.[3] Children with incomplete baseline assessments, any sensory or motor comorbidities, or receiving any other therapy (including special schools or pharmacotherapy) were excluded.

At the time of enrollment in this study, all the included children underwent repeat assessments of the parameters that were assessed at baseline. The mean scores before and after the interventions were compared. Statistical analysis was performed using SPSS software version 11. The differences in the mean scores before and after the intervention were compared using the paired t-test. Significance was set at P value of 0.05.

Assessments

The parameters assessed at baseline and at the time of enrollment in the study were as follows:

Childhood Autism Rating Scale (CARS): This is a 15-item behavior rating scale developed to identify children with autism and grade severity.[4]

Autism Behavior Checklist (ABC): This is a behavior checklist containing 57 items divided into five categories: sensory, body and objects, language, social, and social-help.[5]

Early Developmental Profile (EDP): This is used to assess Developmental Quotient (DQ). It assesses the development in six domains: gross motor, fine motor, cognition, language, social, and Activities of Daily Living (ADL).[6]

Vineland Social Maturity Scale: This 127-item scale assesses Social Quotient (SQ).[7]

Receptive Expressive Emergent Language Scale: This is a 186-item inventory used to assess Expressive and Receptive Language Quotients (ELQ and RLQ).[8]

Intervention protocol

The management protocol followed at CDC for children with AD involves provision of parent-based interventions in a non-structured individualized manner. The program relies on parents as sole therapists for the child, with the specialists only demonstrating to them various activities to be incorporated in their daily living at home. Initially, sessions are carried out every 2 weeks for 2-3 months followed by monthly sessions. Parents are expected to spend 45–90 minutes daily in a one-to-one setting with the child. Other family members such as siblings and grandparents, if available, are also encouraged to be part of the intervention.

An individualized program is designed for each child with the aim of training them in joint attention activities, increasing social interaction, following the basic age-appropriate rules of society in social interaction and play, developing communication and decreasing unwanted behaviors.

Principles of the Naturalistic method/Milieu method are used to create situations during the daily activities of the family, develop joint attention behaviors such as index pointing, gaze switching, showing, and holding out objects.[9] Socialization is encouraged by improving play with siblings and visits to market, neighbors, or relatives. There is a focus on development of social and communicative competence (social smile, greeting and wishing appropriately, cuddling and social orienting, facial looking, waving lifting up of arms to be picked up, etc) and communication for fulfilling daily needs. The use of play-based activities for development of joint attention behaviors, social skills, and communication, e.g. turn taking, requesting etc. is taught. Specific activities include ball play, play using toy-cars, clay, colored stones and balloons, water play, and painting and coloring. Some household utensils, clothes, vegetables, or wrappers (depending on child's interest) are also used for sorting games. Reading of picture book stories/showing pictures is explained to parents who were literate.

The focus for development of communication is on learning of simple gestures and words for communication using principles of Lovaas Applied Behavior Analysis, which are modified to the needs of the family.[10] For children with severe autism who are non-verbal, communication is focused on modification of primitive gestures to useful gestures, signs, and symbols. Pointing along with some verbal vocalization is incorporated in daily activities and in specific activities such as imitating actions and table games (matching of object to object, picture to object, etc). Simple gestures like holding up arms to be picked up and nodding of head for yes/no are also included in the repeated to-fro activities.

The parents are also trained to elicit compliance, ‘waiting’, and control temper tantrums. The focus is on making the child sit at one place and pay attention. The program also stresses on development of skills for activities of daily living, especially in older children with co-morbid severe Mental Retardation. The parents are given demonstration for development of independent skills such as washing, dressing, and meal time routines.

Results

At the time of the study, 36 children aged ≤6 years were on regular follow-up and therapy for last 6 months. Of these, three children had co-morbid cerebral palsy, two had vision impairment, and one had hearing impairment. Four children were on drug Risperidone and, in 10 cases, baseline assessments were incomplete. Therefore, ultimately, the data of the remaining 16 children (13 boys, 3 girls) were analyzed.

The mean age was 39.06±22.05 months. No medical etiology for autism was evident in any child. Six children belonged to the lower socioeconomic strata, while nine belonged to the middle class. Four mothers were illiterate, five had studied up to high school, and seven had college education. Fifteen children had severe autism (CARS scores >45) and one had mild-to-moderate autism (CARS scores 30-45). Co-morbid Global Developmental Delay was present in 13 (81.25%) children.

The average duration of therapy was 19.5±11.78 months. The mean scores of DQ, SQ, ELQ, RLQ, CARS, and ABC before and after the intervention are detailed in Table 1. Significant improvement was noted in DQ (P=0.015), SQ (P=0.004), and ELQ (P=0.03). There was a significant reduction in the CARS (P=0.001) and ABC (P=0.014) scores. Within the individual domains of developmental assessment, there was a significant improvement in scores of cognition, language, social emotional, and activities of daily living, as compared to motor function [Table 2].

Table 1

Effect of parent-based intervention on developmental and autism severity scores (n=16)

Table 2

Effect of parent-based intervention on various developmental domains (n=16)

Discussion

To the best of our knowledge, this is the first study that has evaluated a parent-based behavioral intervention program in autistic children in a low-resource setting. Intensive behavioral interventions are the cornerstones of management of autism; however, their cost is prohibitively high. In this study, we demonstrated the efficacy of parent-based behavioral intervention even when parents were illiterate and belonged to low socioeconomic classes.

The patients in our study showed significant improvement in autism severity as assessed by CARS, expressive language, and adaptive functions scores. Our results were similar to the study by Aldred et al. who demonstrated significant improvements in ADOS total scores and expressive language when parents were educated and trained in adapted communication tailored to their child's individual competencies.[11] Drew et al. conducted a randomized control trial of parent training intervention in preschool children and also found significant improvement in expressive language, but no significant improvement in receptive language, similar to that in our study.[12] A recent randomized-controlled trial assessed the benefit of home-based intervention program in addition to the center-based intervention.[13] There was more improvement in cognitive development and behavior in the additional home intervention group versus the control group (P=0.007).

This study has some significant drawbacks—small number of patients, lack of controls, and wide variation in the duration of intervention. However, the beneficial results are promising and may help to design a standardized parent-based behavior program for autistic children in developing countries.