Durkin Maureen S, Elsabbagh Mayada, Barbaro Josephine, Gladstone Melissa, Happe Francesca, Hoekstra Rosa A, Lee Li-Ching, Rattazzi Alexia, Stapel-Wax Jennifer, Stone Wendy L, Tager-Flusberg Helen, Thurm Audrey, Tomlinson Mark, Shih Andy
Departments of Population Health Sciences and Pediatrics, and Waisman Center, University of Wisconsin-Madison 789 WARF, 610 Walnut Street Madison, Wisconsin.
Department of Psychiatry, McGill University, 1033 Pine Avenue West, Montreal, Quebec, H3A 1A1, Canada.
Autism Res. 2015 Oct;8(5):473-6. doi: 10.1002/aur.1575. Epub 2015 Oct 6.
Most research into the epidemiology, etiology, clinical manifestations, diagnosis and treatment of autism is based on studies in high income countries. Moreover, within high income countries, individuals of high socioeconomic status are disproportionately represented among participants in autism research. Corresponding disparities in access to autism screening, diagnosis, and treatment exist globally. One of the barriers perpetuating this imbalance is the high cost of proprietary tools for diagnosing autism and for delivering evidence-based therapies. Another barrier is the high cost of training of professionals and para-professionals to use the tools. Open-source and open access models provide a way to facilitate global collaboration and training. Using these models and technologies, the autism scientific community and clinicians worldwide should be able to work more effectively and efficiently than they have to date to address the global imbalance in autism knowledge and at the same time advance our understanding of autism and our ability to deliver cost-effective services to everyone in need.
大多数关于自闭症流行病学、病因、临床表现、诊断和治疗的研究都是基于高收入国家的研究。此外,在高收入国家,社会经济地位较高的个体在自闭症研究参与者中所占比例过高。全球在获得自闭症筛查、诊断和治疗方面存在相应的差距。造成这种不平衡持续存在的障碍之一是用于诊断自闭症和提供循证疗法的专利工具成本高昂。另一个障碍是培训专业人员和辅助专业人员使用这些工具的成本高昂。开源和开放获取模式提供了一种促进全球合作与培训的方式。利用这些模式和技术,全球的自闭症科学界和临床医生应该能够比迄今为止更有效、更高效地开展工作,以解决自闭症知识方面的全球不平衡问题,同时增进我们对自闭症的理解以及为每个有需要的人提供具有成本效益服务的能力。