AUTISM A GLOBAL FRAMEWORK FOR ACTION Report of the WISH Autism Forum 2016 Kerim M Munir Tara A Lavelle David T Helm Didi Thompson Jessica Prestt Muhammad Waqar Azeem Suggested reference for this report: Munir KM, Lavelle TA, Helm DT, Thompson D, Prestt J, Azeem MW. Autism: A Global Framework for Action. Doha, Qatar: World Innovation Summit for Health, 2016 Iv AUTISM AUTISM A GLOBAL FRAMEWORK FOR ACTION Report of the WISH Autism Forum 2016 AUTISM 01 CONTENTS 03 Foreword 04 Executive summary 08 Section 1: Overview of the global impact of autism spectrum disorder 17 Section 2: Goals, challenges and opportunities for action 34 Section 3: Policy recommendations 37 Appendices 45 Acknowledgments 48 References 02 AUTISM FOREWORD While the staggering increase in the prevalence of autism spectrum disorder (ASD) over the past 30 years is cause for concern, we have made significant strides in increasing awareness of the condition and developing innovative ways to improve the lives of children, young people and adults with ASD. In 2007, the United Nations (UN) representative from Qatar – Her Highness Sheikha Mozah bint Nasser Al Missned, wife of His Highness Sheikh Hammad Bin Khalifa Al Thani – successfully proposed a UN General Assembly resolution, creating World Autism Awareness Day. This day, recognized on 2 April every year, encourages all member states to take meas- ures to raise awareness about ASD across the world.1 Further, on World Autism Awareness Day in 2016, the UN General Assembly convened an expert panel that emphasized that chil- dren and adults with ASD and other neurodevelopmental disorders have a special place at the heart of the UN Sustainable Development Agenda and in the implementation of the Sustainable Development Goals.2 However, our work is not done. There are still large gaps in the evidence base for effective treatment and also in the epidemiological studies investigating the causes and prevalence of the condition. We also struggle to provide families with adequate support and ensure that children with ASD have access to public education and services. This report explores these challenges and offers three overarching policy recommenda- tions aimed at improving support for children with ASD, their families and communities. Importantly, we acknowledge that ASD cannot be effectively addressed by the health sector alone. Successful national policies require collaboration across health, education and social sectors. Only by breaking down these barriers can we hope to succeed. Professor the Lord Darzi of Denham, Kerim M Munir, MD, MPH, DSc OM, KBE, PC, FRS Director of Psychiatry, University Executive Chair, WISH, Qatar Foundation Center for Excellence in Developmental Director, Institute of Global Health Disabilities, Division of Developmental Innovation, Imperial College London Medicine, Boston Children’s Hospital Society Fellow and Associate Professor of Psychiatry and Pediatrics, Harvard Medical School AUTISM 03 EXECUTIVE SUMMARY Autism spectrum disorder (ASD) represents a group of lifelong neurodevelopmental disorders emerging during early childhood and interfering with a person’s ability to socially relate to and interact with others. As of 2010, there were an estimated 52 million cases of ASD worldwide, represent- ing a substantial increase over the past 40 years.3 Meanwhile, the economic impact of ASD in the United States (US) alone – based on direct medical, direct non-medi- cal and productivity costs – reached an estimated $268 billion in 2015, a figure that is expected to rise to $461 billion by 2025.4 ASD and other neurodevelopmental disor- ders also affect the quality of life of those with the conditions, as well as of their fam- ilies and caregivers. This report provides an overview of ASD and the challenges we face globally in sup- porting and caring for those with the condition. In proposing recommendations for the future, we emphasize five primary areas of action, as shown in Figure 1. Figure 1: Framework for action HEALTH AND WELLBEING FOR PEOPLE WITH AUTISM Increase Provide Implement Support Participate awareness evidence- family access to in high- and rates of based support public quality early therapies systems education, research diagnosis and delivery vocational and of services training and surveillance assisted employment Social services Education Health To accomplish these goals, policymakers must: • increase awareness of ASD and encourage early detection and diagnosis, allow- ing children to access services as early as possible; • ensure that children with ASD have access to evidence-based therapies by pro- viding additional training to parents, teachers and clinicians around the most effective interventions; • provide those with ASD and neurodevelopmental disorders access to public edu- cation, with the goal of inclusion; 04 AUTISM • ensure that families of those with ASD and neurodevelopmental disorders have the appropriate support and information to care for their family members; and • encourage participation in high-quality research and health surveillance to obtain a full and accurate picture of the challenges we face in treating ASD and neurode- velopmental disorders. The WISH Autism Forum has developed three primary policy recommendations to address ASD and other neurodevelopmental disorders globally. These recommenda- tions, aimed at policymakers, support a multi-sector response to ASD that includes health, education and social services. We believe this guidance will help governments to improve the lives of those with ASD and neurodevelopmental disorders, as well as their families and communities. Recommendation 1 Create an interagency co-ordinating commission to address ASD nationally. We recommend the establishment of an independent governmental agency, such as a national Interagency Co-ordinating Commission or a Division of Autism and Neurodevelopmental Disorders, to provide guidance to national governments on issues related to ASD and neurodevelopmental disorders. • Membership of the Commission or Division should include representatives from health, education, social services, employment, family members of those with ASD, self-advocates, service providers, public stakeholders and national non-government organizations (NGOs), as well as researchers and universities representing a variety of perspectives from within the ASD and neurodevelop- mental disorders community. • The vision of the Commission should be to provide ultimate independence, productivity and community inclusion as key components, and to address wide- ranging issues and challenges faced by people with ASD and neurodevelopmental disorders and their families. • Shared and collaborative leadership should be constituted under the Department of Public Health, Education and Social Services (as chairperson and co-chairs) with government authorization to develop and update national strategic plans, programs and policies for ASD and neurodevelopmental disorders, and to mon- itor national, regional and international activities in research, training and advo- cacy for ASD and neurodevelopmental disorders. • Guidance and government oversight should be provided on broader concerns related to ASD and neurodevelopmental disorders to accelerate and enhance the development of services across the person’s lifespan. AUTISM 05 Recommendation 2 Establish interdisciplinary training and research centers for excellence in ASD and neurodevelopmental disorders across the lifespan. We recommend the establish- ment of national or regional training centers (based on size of catchment) with core funding and oversight by interagency co-ordinating commissions to: • Provide interdisciplinary education and training in multiple disciplines at under- graduate, graduate and post-graduate levels regarding ASD and neurodevelop- mental disorders across the lifespan. • Provide cutting-edge research, evaluation and policy analysis in areas of impor- tance to the field of ASD and neurodevelopmental disorders. • Communicate, disseminate and share information and research findings with a broad constituency. • Direct services and support to persons with ASD and neurodevelopmental disor- ders of all ages, and their families, to minimize disparities in healthcare, enhance educational opportunities, develop work skills, enrich daily living and promote community inclusion. • Use emerging technologies to bolster learning, employment and community participation for all persons with ASD and neurodevelopmental disorders. • Work with schools as well as vocational and employment settings to deliver evidence-based programs in inclusive settings. • Engage with policymakers who are charged with setting future policy to put research into practice and evaluate the impact of services and policies. • Support individuals and families as they engage in self-advocacy and self- determination. Recommendation 3 Establish a global partnership framework to address ASD and neurodevelopmen- tal disorders across the lifespan. To address the significant gaps in the care of per- sons with ASD and neurodevelopmental disorders at a global scale, we recommend the formation of a global partnership framework involving member governments from high-income countries (HICs) and low- and middle-income countries (LMICs), as well as the private sector and civil society. This partnership will help to co- ordinate a sustainable response for each region in terms of policy reform, service development and delivery, research and dissemination of evidence-based practice. Such a partnership framework will