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Cultural Adaptations in ASD Diagnostic Assessments and Case Determination in a Rural Region of Bangladesh
Cultural influence on the perception of autism-related behaviors has drawn much attention, yet data are scant on this subject. Because Autism Spectrum Disorder (ASD) diagnosis is solely based on observed behaviors, cultural norm and perception of these behaviors play a crucial role on modification of diagnostic assessment tools and threshold of diagnostic cut-offs. Taking advantage of a community-based ASD epidemiologic study recently conducted in rural Bangladesh, we aim to propose a way to modify criteria used in Western countries for the study population.
Objectives:
First, to describe the procedures of conducting the Autism Diagnostic Observation Schedule-2 (ADOS-2) and the Autism Diagnostic Interview – Revised (ADI-R) research training for local clinicians. Second, to discuss modifications on the diagnostic tools and case determination criteria. Third, to report screening process using Social Communication Questionnaire (SCQ). Fourth, to determine ASD case status based on ADOS-2 and ADI-R in children aged 8-10 years who were SCQ positive from this community-based epidemiologic study.
Methods:
Building on the infrastructure of JiVitA, a large maternal and child health project aims to evaluate interventions to improve reproductive and child health in Bangladesh, the present study adapted and culturally modified SCQ, ADOS-2, and ADI-R in order to estimate prevalence rate in the defined population. The A three-week long workshop was conducted in Bangladesh by an ADOS-2 and ADI-R expert from the US (Dr. Risi), followed with weekly conference calls to discuss practice administrations, standard practice videos and respond to questions, modification and cultural adaptations. SCQ was administered by research staff via an at-home interview. The ADOS-2 and the ADI-R were administered by a local developmental psychologist after achieving research-level reliability.
Results:
A total of 8211 mother’s completed the SCQ screener on 4109 boys and 4102 girls aged 8-10 years. Children with SCQ>=15 and a selected group of SCQ<15 were invited for ADOS-2 and ADI-R evaluations. As a result, 107 ADOS-2 and 121 ADI-R were conducted.
Conclusions:
ADOS-2 and ADI-R research training in Bangladesh is a challenge for many reasons including language barriers and unknown cultural applicability of these instruments. Required research reliability can be reached; however, enormous effort and time are needed. Cultural adaptation may not be a one-time task occurring during translation, as the need for more adaption may be recognized and recommended after more experience is gained from ADOS-2 and ADI-R administration.
We substituted ADOS-2 standard materials with more culturally relevant materials when necessary (e.g., Description of a Picture materials on the ADOS). The ADI-R questions about more general behaviors such as toileting, aggression, family routine, as well as some items ‘use of a body as a tool’ were not as informative in this cultural context; however, specific social-communication items and RRB questions are more pertinent.
Because of reporting of specific behaviors related to ASD on the ADI-R was lower overall, standard cut-offs were reduced in an effort to capture children who may be exhibiting some ASD related behaviors and to assess these behaviors directly using the ADOS-2.