Cross Cultural Issues in Tool Adaptation, Screening and Assessment of ASD Research Globally

Background: Culture is broadly used to refer to a complex of learned behaviour patterns that characterizes a particular group, community, or population. This process is continuously evolving and determines their perceptions, way of communication and interaction with one another. Challenges exist in establishing Autistic Spectrum Disorders (ASD) diagnoses based on behavioral criteria due to the prevailing cross cultural differences. These disparities, present an inherent dilemma in attempting to adapt screening and diagnostic tools. The value of these tools for application in developing countries is limited by scarce resources and cultural factors affecting clinical manifestations and/or interpretation of behaviours. These factors impact on community recognition and integration of ASD-affected individuals.
Methods: We initiated an ASD screening and assessment project in the sub-Saharan country of Uganda, nested in the context of a broader neuro-developmental three stage screening and assessment project. In the first stage, the Ten Questions Screen (TQ) was adapted for screening to include 10 questions specific for ASD, five each for those above and below five years of age respectively. The second stage for assessment picked out those children with possible ASD for referral to the final confirmatory stage by a psychiatrist using the DSM IV-R criteria.
Results: Issues encountered included selecting the choice of questions, ensuring their local language translation was clear to illicit the valid responses and providing appropriate examples to clarify culturally specific questions like the “mama and tata” games played during childhood. During assessment and confirmation, several children with varying disabilities and other medical conditions were examined including: delayed speech development, mental retardation and severe malnutrition.
Conclusion: Standardization of screening tools for ASD is fraught with many challenges. This should not deter the process of tool adaptation and validation to be culturally relevant and sensitive for accurate diagnosis and facilitation of early detection of ASD.