There are about 70 million people in the world with autism, and 85% of them live in developing countries.  While research and support is dramatically expanding in wealthy parts of the world, the rest of the world’s children with autism often go undiagnosed, stigmatized and marginalized.

The challenge of addressing autism spectrum disorder (ASD) in the developing world crosses financial and cultural borders. In some countries people believe autism to be the work of ‘ancestral spirits’ or the devil, and so go to traditional healers for help, feeling shamed by their communities.

Even when caregivers are aware of autism, treatment facilities are extremely sparse.  Endicott PhD student and BCBA practitioner Allison Bickelman recently spent 2.5 weeks in Kenya with the Global Autism Project where, she explains, “There is only 1 BCBA in all of east Africa (for comparison, there are 8 BCBA’s at my agency in Los Angeles alone), and therefore only one school that accepts kids with autism and provides them with the services and treatment that they need to be successful. The majority of kids don’t receive a diagnosis until age 7 or 8, typically after they have been kicked out of multiple schools.”

Most health care workers in developing countries have little or no mental health training, and so family caregivers carry almost all the burden of care. Such a burden also impacts the mothers’ psychological health and social status. Bickelman saw this in Kenya: “So many people had never heard the word autism, let alone ABA. They said, ‘We don’t talk about that here.’ Not only was autism not discussed, but any mental or physical disability or disorder was kept quiet.”

Closing the huge gaps in research, awareness and treatment of ASD between the developed and developing nations requires global initiatives and boots on the ground. Three factors are most important:

• Research: Before we can effectively develop policy and services, we must better understand the true global incidence of autism – that is, the number of cases at a given time within a population and the availability of services. This will require more systematic scientific reviews.
  Other research may focus on developing and adapting effective screening methods in other cultures.
• Building awareness: To reduce stigma and facilitate early detection, communities need to understand the causes and treatments for ASD. Research shows that parent support networks are most helpful in empowering and strengthening families to challenge discrimination.
• Train practitioners and caregivers: In many countries, resources are so scarce for children with autism that parents are often their only therapists. They are exhausted, over-burdened, and isolated. Organizations like the Global Autism Project send BCBAs like Bickelman to countries in need, where they can train health care workers, teachers and families in managing ASD. “The staff working with these kids every day are true heroes-they have less financial and tangible resources than we do, and face more stigma and negativity than we do, and yet they dedicated and passionate about their work,” she says.

And of course, we must begin with the understanding that autism has no borders. As Allison aptly puts it, “Regardless of location or ethnicity, kids are the same-they want to have fun, be loved, and they deserve to reach their full potential, and not be limited by the country they live in or socioeconomic status or race they are born into.”

For more information about how you can become BCBA trained, visit the Institute for Behavioral Studies at Endicott College.