Developing a Global Framework for Improving the Lives of Individuals with Autism Spectrum Disorder

Saturday, May 13, 2017: 12:00 PM-1:40 PM
Golden Gate Ballroom (Marriott Marquis Hotel)
T. A. Lavelle1, D. T. Helm2,3, M. W. Azeem4 and K. M. Munir5,6, (1)Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA, (2)Boston Children's Hospital, Boston, MA, (3)Institute for Community Inclusion, Boston, MA, (4)Sidra Medical and Research Center, Doha, Qatar, (5)Division of Developmental Medicine, Boston Children's Hospital, Boston, MA, (6)Harvard Medical School, Boston, MA
Background: With the growing global prevalence of Autism Spectrum Disorder (ASD), international governments and community members have struggled to meet the increasing needs of individuals with this condition, and their families.

Objectives: Our goal was to identify challenges currently facing communities worldwide in meeting the needs of individuals with ASD, and offer policy recommendations that would support these individuals and their families.

Methods: During the winter and spring of 2016 we conducted 23 semi-structured telephone interviews with a convenience sample of clinicians, researchers, policymakers, and non-profit workers with knowledge regarding ASD services in their country, or internationally. Participants were from 12 countries, ranging from low and middle income to high-income countries worldwide. We asked participants questions related to the current level of services provided in their country, barriers faced in expanding these services, and established practices for overcoming these barriers, if available. Interview data were analyzed using thematic analysis. Research was sponsored by the Qatar Foundation’s World Innovation Summit in Health (WISH).

Results: From our interviews, five main themes emerged related to challenges faced in meeting the growing needs of individuals with ASD worldwide: early identification and diagnosis, offering evidence-based therapies, providing family support systems, enabling access to public education, vocational training and assisted employment, and participating in high-quality research and surveillance. Opportunities to overcome these barriers utilized resources available in the health, educational and social sectors of countries. Based on these challenges and opportunities, we developed three overarching recommendations for policymakers worldwide to coordinate the response to ASD, and affect substantive change: (1) Create an interagency coordinating commission to address ASD nationally, (2) Establish interdisciplinary training and research centers for excellence in ASD, and (3) Establish a global partnership framework to address ASD across the lifespan.

Conclusions: The guidance developed from this work will help governments enact policies that improve the lives of individuals with ASD, their families and their communities.