Although heterogeneity inherent in Autism Spectrum Disorders (ASDs) has long been recognized, little is known about ways in which race, gender, socio-economic status, family culture and communication during clinical encounters affect the acquisition of diagnosis and related services. Considered a barrier to more rapid advancements in autism research, heterogeneity within ASDs has never been examined as a socio- cultural phenomenon where interpretation of atypical behavior is itself examined against socio-cultural expectations of normative development under default socio-economic circumstances. We propose to examine heterogeneity in ASDs as a socio-culturally based phenomenon in relation to three domains: 1) patterns of communication among African American caregivers and practitioners during clinical encounters that are vital for developing partnerships and that are vulnerable to misunderstanding;2) structural barriers to and opportunities for African American children receiving timely and accurate diagnosis and appropriate services;and 3) African American caregivers'knowledge about ASDs and the social networks relevant to information about diagnostic evaluations, interventions and services. We know from population-level demographic studies that there is an unprecedented scale of health and service disparities in autism diagnosis for African American children. The picture that emerges from these studies is of systematic delays in diagnosis and challenges to secure appropriate services once the diagnosis is received (Mandell, 2005, Mandell et al. 2007, Stahmer &Mandell 2007). In a significant number of children, ASDs are identified late in childhood or missed altogether (California Legislative Blue Ribbon Commission on Autism, 2005, 2007). This troubling picture repeats the pattern of healthcare and service disparities for African Americans across illness categories. Following recommendations of the Institute of Medicine to address health disparities at two levels, interactional and structural, (IOM, 1999), this two-year urban, multi-method ethnographic study examines disparities in diagnostic processes and service delivery related to acquisition of ASDs diagnosis, and communication during clinical encounters for a cohort of African American children living in the Los Angeles metropolitan area. We propose a novel combination of methods, urban ethnography (Lawlor, 2004;Mattingly &Lawlor, 2003) and social networks analysis (Valente, 1995, 2002;Valente, Paredes &Poppe, 1998) to follow a cohort of African American children diagnosed with ASDs, their primary caregivers and the practitioners who serve them, to document the children's'pathways to an ASDs diagnosis and services. The importance of early identification and intervention (Dawson &Osterling, 1997) and delayed diagnosis among economically disadvantaged populations (Mandell et al., 2007) make this study a critical step towards decreasing health and service disparities for African American children with autism in urban context and facilitating practitioner-family partnership in clinical encounters.
The project examines disparities in ASDs diagnosis and services for African American children in urban setting. Results of the project will help caregivers and practitioners to better communicate and partner during clinical encounters. The project will facilitate earlier diagnosis and services for African American children with ASDs which will help improve their developmental outcomes.
