The benefits and setbacks of research: Why we need more research from low and middle income countries

This article first appeared in the Fall edition of the International Society for Autism Research’s newsletter.

 

Autism research in the Global South (countries outside of North America and Europe, that is) faces many daunting obstacles, including the lack of prevalence data for autism and other developmental disorders. Another challenge is that, with the big burden of infectious diseases such as HIV and malaria – and now Zika – in these countries, there is a dire lack of funding for non-communicable and non-fatal diseases such as autism. These challenges mean that there is less government support for autism research and service delivery. Hopefully, obstacles such as these will foster creative research techniques: It challenges the research community to create low-cost and relatively culturally unbiased assessment tools – tools that are fair regardless of education, language, or race. Everyone stands to gain from increased research coming from developing countries: For example, populations in the Global South are typically linguistically, culturally, and genetically diverse, which can improve our understanding of the behavioral presentation and genetics of autism. Staggeringly, almost all genetic research has been done on middle-income individuals from European descent, though this by no means represents the global population.

Clearly, more international and interdisciplinary collaborations are needed. Research groups often do well by partnering with non-profit groups to promote research and raise autism awareness at the same time. Partnerships with the technology industry also hold promise for long-distance diagnosis and intervention. This may be particularly true in Africa, where people in rural areas sometimes have to travel for hours to access healthcare services, and where more people have a mobile phone than piped water or electricity at home. Collaborations are our best bet for moving towards research that includes low-income groups of diverse racial, linguistic and cultural backgrounds.

A challenge for international research is knowing when to follow standardized procedures originating from the Global North, and when to develop new techniques. Certainly, some problems will need to be approached differently in low-resource countries. For example, the ratio of professional healthcare providers to individuals seeking care is enormous in many countries in the Global South, and large-scale interventions delivered by specialized providers are unlikely to be sustainable. However, many cultures are very community-oriented – something researchers and healthcare providers can harness to provide intervention and safe spaces in areas where trained professionals are not available. Discussions between research groups facing similar problems can be helpful for fostering new ideas without reinventing the wheel.

It is promising that autism research coming from the Global South is increasing: It holds many challenges, but also great opportunity for improving the lives of countless people.

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About UCT Autism Research

The aim of University of Cape Town Autism ACSEPT is to promote autism awareness and knowledge through high-quality basic and applied research.
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