Culture can be defined as the way of life of a group of people – the behaviors, beliefs, values, and symbols that they accept. As such, differences in culture influence the way we perceive the social world. Our goal is to develop adaptive technologies for individuals with autism. However, we realize that the design of such treatment programs must be informed by data on the culture of the individual in question.
We have studied the ways that culture affects expectations regarding social and adaptive behaviors in individuals with autism in four countries: Kuwait, Pakistan, Korea, and the United States. We hypothesize that social factors such as religion, socio-economic status, lifestyles and infrastructure, impact attitudes towards individuals with autism and mediate the expectations society has for them. Our goal is to understand how cultural differences impact the overall expectation for social behavior, and to provide a cultural lens onto the autism communities, so that we may help members of society understand ways they can support these individuals in a greater context.
We conducted observations at schools and special needs centers, and semi-structured interviews with caregivers including parents, and teachers and therapists who work with young adults with autism. Participants were asked to answer a set of questions about the current interventions and therapies the child was receiving, and their goals for the development of the child’s life skills and social skills. The data in each country was collected by a researcher who is native to the culture, and the transcripts and field notes are being analyzed, using affinity diagrams and open-coding, by the team to ensure cultural sensitivity in data collection and unbiased data analysis.
Preliminary findings indicate that cultural factors such as religion, education-level and the context in which that education was received, socio-economic status, and exposure to other cultures lead to differing attitudes towards individuals with autism and the expectations parents and teachers have for them. For example, whereas learning to live independently is strongly emphasized in the US and Korea, it did not emerge as a clear goal in our interviews with caregivers from Kuwait and Pakistan. This is a reflection of the strong religious values held in these societies. These values similarly were indicated as reasons why parents were complacent in ensuring their child reached their potential, citing the fact that the child’s development “was in God’s hands.”
We have gathered qualitative data suggesting that culture plays a pivotal role in framing expectations for social behavior, and what treatment goals are deemed socially acceptable and relevant for individuals with autism. Our preliminary findings underscore our intuitive sense that treatments aimed at improving social skills and adaptive functioning in individuals with autism must take into account the mores of the individual's society. In ongoing analyses, we will additionally focus on how public policies, such as regulations related to inclusive classrooms, have impacted social perceptions.
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