Integrating Clinic-Based and Parent-Mediated Intervention for Autism in India

Background: India contributes to most of the five million children with Autism Spectrum Disorder (ASD) in South Asia. However, studies have mainly reviewed solitary therapies or exclusive parent-mediated interventions. The clinical complexity of ASD demands a comprehensive approach. Few studies have evaluated clinical interventions aligned with intensive caregiver-engagement, partly due to the scarce treatment documentation and limited patient compliance for a sustained duration due to low insurance coverage.

Objectives: This study aims to describe the framework and outcomes of an interdisciplinary intervention program for children with ASD in Mumbai, India.

Methods: Founded in 2003, the aforesaid program headed by a developmental pediatrician includes an audiologist, psychologists, occupational and physical therapists, remedial educators, speech therapists and other visiting specialists (ophthalmologist, neurologist, orthopedic, psychiatrist, and nutritionist). Each child receives a trans-departmental evaluation and an interdisciplinary, goal-oriented, individualized and measurable program for a defined time-period (e.g. six months). Thereafter, the child is re-evaluated for the attainment of therapeutic goals. Individual sessions span 45 minutes with a 1:1 child-therapist ratio. On average, children receive 48-72 sessions of occupational therapy (2-3/week), 24-48 sessions of speech therapy (1-2/week) and 5-6 sessions of caregiver counseling. In addition to monthly counseling, a ‘home-program’ encourages caregivers to adhere to proven practices for mitigating routine behavioral concerns in ASD (adequate sleep, outdoor physical play, minimum gadget and animation exposure and home-cooked ASD-customized diet); and monthly group meetings help them to co-learn ways to interpret and respond to the child’s needs. Retrospective quantitative (Stata-12) and qualitative sub-analyses at different time-points with varying sample sizes (due to the degree of patient compliance and documentation of outcomes) revealed key results.

Results: Out of 4265 children evaluated during 2009-2016, 625 were diagnosed with ASD (14.6%; mean chronological age [CA]:49 months) using the Diagnostic and Statistical Manual of Mental Disorders. Data reflect the public health burden of delayed care-seeking. Paired t-test analysis (n=19) of Receptive-Expressive Emergent Language Scale assessments revealed significant differences between mean receptive language age (RLA in months) at evaluation-1 (mean:20.7) and evaluation-2 (mean:30.6) [p=0.003,95% CI:3.6-16.1]; and mean expressive language age (ELA in months) at evaluation-1 (mean:16.1) and evaluation-2 (mean:24.9) [p=0.006,95% CI:2.6-14.9]. Difference in mean total scores on Childhood Autism Rating Scale (n=38) was 4.2 (p=0.0001,95%CI:3.2-5.1); and in mean social age on Vineland Social Maturity Scale was 0.8 years (p=0.0001,95%CI:0.6-1.1). Thus, the six-month intervention substantially impacted receptive and expressive communication and social behavior. The gap between CA and RLA (not ELA) at evaluation-1, inversely correlated with therapeutic outcomes. These results are supported by studies citing greater receptive language difficulties in ASD (viz. echolalia, scripted speech, and unusual prosody) compared to expressive language. Caregiver interviews (n=10) revealed that parents developed a greater acceptance of their child’s condition under the guidance of an interdisciplinary team employing a goal-oriented treatment plan; adherence to the home-program and counseling that periodically addressed their concerns.

Conclusions:

The author organized a consortium for drafting national guidelines on the management of ASD in India, which were published in 2017. Prospective studies should evaluate such an integrated intervention model in India.