A diagnosis of autism spectrum disorder (ASD) has implications for physical/mental health, education, communication, social interactions/relationships, and family functioning. Conservative estimates of ASD prevalence are currently 1 in 68 (based on 2010 data from the CDC), which would estimate over 16,000 individuals in the Greater New Orleans area should meet criteria for an ASD. Despite this large number, there has been no communitywide effort to coordinate and integrate resources for individuals with ASD. Families often complain that finding resources that meet their needs are either nonexistent or difficult to access. The stress and economic toll on families managing ASD is overwhelming at times because of the scarcity of services, the effort required to locate and coordinate services, and the time away from work for transportation to services and subsequent loss of income.
Research on effective symptom management and improving quality of life with ASD is lagging far behind expectations. However, there is research supporting emerging evidence-based interventions. In order to compare the effectiveness of methods for improving quality of life, we must understand patterns of service utilization in the community.
The goals of this Tier I project include: forming relationships, communication strategies, and methods for gathering families, self-advocates, professionals and organizations, researchers, and members/leaders of the community to assess current and future health and well-being needs of individuals with ASD. Other goals include engaging stakeholders in discussions of current resources/systems, then identifying changes to be made to improve the overall quality of life for individuals and families with ASD.