Abstract
The relatively nascent empirical knowledge base regarding autism in adulthood provides an opportunity to adopt a contextual approach that conceptualizes autism features, outcomes, and supportive services as interactions between the characteristics of the condition and contextual factors across the life course. Although a contextual approach encompasses many aspects of a person's identity and social ecology, we focus here on the closely interrelated family and cultural contexts, which have been poorly integrated into adult autism research. We argue that designing studies with a priori attention to context (e.g., family and culture) will improve the relevance and comprehensiveness of findings, which in turn will improve construct validity and provide a more accurate understanding of autism-related outcomes in adulthood. Similarly, designing and/or selecting measures that have been validated with culturally and linguistically diverse samples will improve the utility of findings and reduce spurious or null effects. More contextually informed methodologies will lead to improved generalizability and practical applications of findings. We offer concrete guidance regarding how to increase the social ecological perspective within adult autism research as it relates to study conceptualization, methodology, and measurement.
Lay summary
Why did we write this perspective?
People on the autism spectrum are different from each other. They have different families and cultures. Research articles about autism in adulthood do not always talk about what differences in families and culture might mean. We wrote this article to tell researchers why it is important to work with people from different families and cultures.
Why is diversity important in adult autism research?
It is important to include the perspectives of diverse individuals in research. This can help to make sure that research findings apply to all individuals on the autism spectrum and their family members. Researchers should ask research questions that are important to individuals and families from different cultures. Researchers also should make sure that findings apply to adults and families from different cultures.
How can we improve the diversity of adult autism research?
We provide ideas about how to improve autism research. It is important to think about how families experience autism differently. Researchers should ask adults on the autism spectrum and their family members to participate in research. It is also important to make sure that the people who participate in research come from different backgrounds. Researchers should include families who have different races, ethnicities, or cultures.
Researchers should design studies that provide information on how individuals and families experience autism differently. For example, researchers might ask members of the community to help with designing research studies. Researchers also might ask participants to talk about their experiences, in addition to asking them to complete questionnaires.
Measures should work well for everyone who participates in research. Researchers should use measures that work for participants who are from a different culture from the researcher or who speak a language that is different from the researcher's primary language. Researchers should consider how each question on the measure applies to diverse individuals and families. Researchers also should make sure that questions are asked in the right ways. For example, questions should be understood similarly by individuals from different cultural groups.
How will these recommendations help individuals and families?
Currently, research tells us about how some adults and families experience autism. In the future, we want to make sure that research tells us about how many more adults and families experience autism. By thinking about families and culture, we will know more about what autism means and what is important for autism research to address. We will know more about how to support individuals and families in ways that match their preferences and values.
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