Findings From the Insar Special Interest Group: Global Knowledge Translation for Research On Early Identification and Intervention in Autism

Background: Autism remains under-diagnosed in many communities across the world, and especially where priorities include issues of survival and physical health (Khan et al., 2012). Research plays a critical role in supporting and enabling community-based efforts in early identification and intervention (Elsbbagh, 2012). The INSAR special interest group (SIG) “Global Knowledge Translation for Research on Early Identification and Intervention in Autism” was formed in 2011 to support mapping of community needs in this area.

Objectives: The inaugural meeting of the SIG was focused on sharing global perspectives on community-based approaches in early identification and intervention and gathering suggestions for future research priorities.

Methods: Participants in the inaugural SIG were 90 international clinicians and researchers. During a 40-minute session, subgroups of participants (8-10 per group) discussed the following thematic priorities in supporting early identification and intervention: (a) Enhancing community awareness and public engagement, (b) Supporting informed decision-making and evidence-based practice, (c) Building research capacity in under-resourced communities, (d) Implementation of evidence-based public policy. Content domains and items were generated from subgroups’ written notes. We identified emerging themes from the discussions and determined the priority of each theme from the frequency of discussion across groups.

Results: Some factors that impede early identification and interventions in diverse community settings appear to be systemic such as the lack of resources and limited knowledge and training among primary health care and education professionals. Other factors are cultural, including pervasive stigma and misconceptions regarding the biological basis of autism. Capacity building efforts in some communities have relied on linguistic translation of screening/diagnostic tools, intervention manuals, and support programs developed in high-income communities. While some participants view such approaches as essential, others cautioned that translation has often undermined the importance of culturally-sensitive and contextually-relevant adaptation addressing the needs and priorities of diverse communities. Examples of priority areas for action include (a) empowerment and engagement of families and community stakeholders,  (b) enhanced understanding of diverse communities’ priorities, capacity, and resources, (c) supporting the integration of identification programs within existing health and educational systems, (d) pairing awareness and identification programs with support for those affected, and (e) adopting broader child health/education/human rights perspectives that encompass a range of developmental conditions as well as autism.

Conclusions: Over the next two years, the SIG will offer a vehicle supporting dialogue and sharing of knowledge from diverse communities in the area of early identification and intervention.

Acknowledgement: We are grateful to the participants of the SIG for expressing their views and sharing their experience.