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Your Dollars @ Work: Delivering Autism Services to the Underserved

Posted by Andy Shih, Autism Speaks senior vice president for scientific affairs

 

In 2008, Autism Speaks launched its Global Autism Public Health Initiative (GAPH) to pioneer ways to serve families affected by autism worldwide. Over the last five years, our donors and volunteers have invested whole-heartedly in this global mission. The past year has been especially exciting in terms of return on your investment.

As many of you will recall, the executive board of the World Health Organization (WHO) adopted a formal resolution on autism last summer. It delivered a commitment to action by more than 50 nations. This, in turn, led to WHO’s first international consultation on autism and developmental disabilities in September. Autism Speaks was the proud co-sponsor of this historic meeting in Geneva.

Such resolutions and conferences enable us to forge partnerships, identify priorities and coordinate efforts. Still, they’re just the first steps in delivering support and services.

Today, I’m pleased to describe progress on one of the top priorities of this global mission: To develop and evaluate ways to bring autism services to communities where families lack access to the intensive behavioral therapies we recognize as the gold standard of care.

Autism affects an estimated 70 million people globally 85 percent – or nearly 60 million – of whom live in low- to middle-income countries. It’s simply not possible to provide the vast majority of these individuals with access to highly trained behavioral therapists. The same can be said of many underserved communities in North America – particularly those in small, remote towns and impoverished urban centers.

So how can we deliver evidence-based autism care and support to more individuals world-wide? By “evidence based,” we mean services that have demonstrated real benefits in studies using scientifically reliable methods.

To answer this question, Autism Speaks recently funded a WHO review of all published studies on autism therapies delivered by trained non-specialists. These non-specialists included village health workers, teachers and parents who’d undergone training in the basics of autism intervention. Understandably, there had been skepticism whether such para-professionals could achieve real results.

In all, the WHO researchers identified 29 studies. Individually, each was limited by a relatively small number of participants. But together, they involved more than 1,300 children with autism. What’s more, most of these studies involved children and teens with severely disabling forms of autism.

Now, the journal PLOS Medicine has published the encouraging results. The review found that autism interventions delivered by trained non-specialists can indeed produce significant gains in communication, social interaction and daily life skills. In fact, many of the programs surpassed the results of comparable services delivered by highly trained specialists. (Read the full text of the study here.)

Why are these findings important?
This is wonderful news, not just for impoverished nations and underserved communities. It also supports all of our family advocacy efforts. Clearly, parents and community members can and should be embraced as vital partners in the care and support of individuals with autism throughout the lifespan.

These findings send a clear message about the worth of investing in autism training programs for parents, teachers, health workers and even employers.

Autism Speaks is currently funding a number of such programs. In rural Colorado, for example, we’re funding a research project on the effectiveness of distance-learning to train teachers to screen for autism in the classroom. In Albania, Taiwan and South Asia, we’re supporting the adaptation and testing of a variety of parent-delivered behavioral therapies. Working with the WHO, we are conducting field trials of training programs for para-professionals in Sri Lanka, Panama and Lesotho. Autism Speaks is also supporting research on a broad range of parent-mediated interventions through our Toddler Treatment Network.

I want to emphasize that this encouraging report does not suggest – in any way – that we don’t need highly trained autism therapists. This is about forging better partnerships between specialists and the families, teachers and community members who are an integral part of daily life for individuals with autism.

We’d love to hear your thoughts in the comment section below. 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.