Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide

Abstract

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.

Whittling Down the Wait Time

“…51 Currently, the high costs to use these proprietary tools and to train professionals to use them consequently limit the number of proficient providers, particularly in resources-limited settings, and may add to the bottleneck for families at ASD centers. In contrast to many of the “gold-standard” assessments such as the ADOS 22 and Autism Diagnostic Interview–Revised, 52 open source tools are free to access without cost.…”

A review of screening tools for the identification of autism spectrum disorders and developmental delay in infants and young children: recommendations for use in low‐ and middle‐income countries

“…Regular screening during health care visits for autism or DD offers an easily administered means of early detection, while enabling referral for further evaluation and intervention where needed. However, despite its promise, early detection remains a challenge in both HIC and LMIC (Barton, Dumont-Mathieu, & Fein, 2012;Durkin et al, 2015;King et al, 2010;Macy et al, 2014). Identification is difficult in early life, when changes in development are rapid, domains overlap, and early signs are often subtle (Mukherjee, Aneja, Krishnamurthy, & Srinivasan, 2014).…”

Translating neuroscience to the front lines: point-of-care detection of neuropsychiatric disorders

“…1 Low-and middle-income countries (LMICs) in particular present three barriers: low help-seeking behavior, in part due to limited awareness and stigma associated with mental disorders; paucity of mental health professionals to conduct diagnostic assessments; and reliance on diagnostic interviews many of which are time-intensive or proprietary and may not be cross-culturally valid. 2 Identifying biomarkers that could aid early detection of mental disorders is a major goal for neuroscience research. Biomarkers may be defined as "any characteristic that is objectively measured and evaluated as an indicator of normal biological processes, pathogenic processes, or pharmacologic responses to a therapeutic intervention".…”