Caregivers' Perspectives on Facilitators and Barriers to Early Identification of Children with ASD

Background:  Finding effective solutions to the gap between research and practice presents a major challenge for the autism community. Over the past several decades, there has been an evolving recognition that the traditional intervention research model in which the flow of information is from research to practice is outmoded and ineffective (Wallerstein & Duran, 2010). As noted by Stahmer and colleagues (2011), one means to bridge the gap is through understanding the perspectives of community stakeholders regarding the benefits and barriers of specific practices and early intervention services. 

Objectives:  The current study was designed to gain the perspectives of North Carolina caregivers of children with ASD regarding the facilitators and barriers to early identification, evaluation, and entry into early intervention services.  

Methods:  Eight focus groups (4 English speaking, 2 Spanish speaking, 2 American Indian) with 55 caregivers of young children diagnosed with ASD were conducted in six regions of North Carolina. Caregivers were asked to describe the facilitators and barriers within three time periods: between first concerns and consulting with a professional, up through the diagnosis, and through entry into early intervention. Caregivers were also asked to discuss how these processes could be improved.

Results:  

Across the three time periods, caregivers highlighted many similar barriers in the early identification and intervention process, including: not knowing who/where to go, getting conflicting advice, disagreements within and outside the family, their own uncertainty or “denial” (as described by caregivers), moving through multiple providers to get answers, limited resources, professional and parental lack of knowledge, and family and cultural beliefs. They also had particularly negative experiences during their first conversations with professionals and within the process of getting a diagnosis. In contrast, caregivers reported few facilitators; however a small minority of families noted professionals (physician, early care provider) or a family member first raised concerns and then linked them with professional services. There were some differences highlighted between cultural groups especially related to language and cultural barriers and lack of resources in rural and American Indian communities. Caregivers provided many suggestions about how early identification, evaluation and diagnosis, and intervention entry could be facilitated. Suggestions included having navigators to guide them through the processes, clear guidelines/roadmaps of printed materials for decision making, better connections with local resources, enhanced education for professionals (physicians, teachers), and more parent-to-parent opportunities.

Conclusions:  

The parent perspectives shared during the focus groups contain a rich source of information for professionals interested in improving the early identification, evaluation and diagnosis, and entry into intervention services for children with ASD and their families.  In addition, the personal experiences shared by the participants could be influential in affecting policy at local, state, and national levels, as well as informing research agendas in the coming years.