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Identifying Autism in Disadvantaged Regions: Challenges & Opportunity

Autism Speaks co-hosts meeting to spur development of practical means to diagnose autism in low- and middle-income countries
October 15, 2014

Autism Speaks co-hosts meeting to spur development of practical means to diagnose autism in low- and middle-income countries

(Oct 15, 2014) Today, autism researchers and clinicians from around the world will meet in Baltimore to begin developing practical and freely available tools for diagnosing autism in low- and middle-income countries.

The meeting – “Autism Diagnosis in Low Resource Settings: Challenges and Opportunities to Enhance Research and Services Worldwide” – is a collaboration between Autism Speaks, Johns Hopkins Bloomberg School of Public Health and the International Society for Autism Research (INSAR). The World Health Organization (WHO) is providing technical support.

“Over the last two years, both the U.N. General Assembly and the World Health Organization have passed resolutions on autism, calling on all member nations to improve access to care,” says Andy Shih, Autism Speaks senior vice president for scientific affairs. “But the only way we can translate these resolutions into action is by delivering feasible, low-cost solutions for autism diagnosis and services in low-resource settings.”

Dr. Shih notes that research funded in part by Autism Speaks has already helped develop the first evidence-based, low-cost autism therapies for communities without access to specialists. Generally these programs involve training parents and community workers to deliver basic services.

But few if any services can be delivered without diagnosis. And autism diagnosis remains a challenge outside affluent countries.

In part, this is because the “gold standard” diagnostic checklists are costly to deliver. They require a high degree of professional training to use and have copyright fees that make them unaffordable in much of the world.

“We need diagnostic instruments that are culturally adapted, translated and free,” Dr. Shih emphasizes.

The Baltimore meeting’s goal is to develop a consensus on potential solutions and outline a process for developing them. This will include the formation of a core group of experts to lead the global effort.

Autism Speaks and its collaborators hope to launch international, multisite trials to evaluate potential diagnostic programs in 2015. 

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