Shedding Light on Autism in Ghana

A group of New Jersey mothers work to raise awareness about Autism in Ghana.

Autism Awareness in Ghana
An autistic girl at the Dzworlu School.
Matt Rainey For St. Peter's University Hospital.

Three New Jersey moms have joined forces to raise autism awareness in Ghana, a nation where the diagnosis and treatment of behavioral disabilities are still hindered by a culture of denial and shame.

Genevieve Kumapley, a Ghana native and South Brunswick resident, felt compelled to act after visiting Ghana in February 2012 with the California-based Autism Research Institute, a network of professionals and parents committed to preventing, diagnosing and treating autism. An oncology pharmacist at St. Peter’s University Hospital in New Brunswick and mother of an 11-year-old autistic son, Kumapley was deeply saddened by the lack of autism resources in her native land. At the time, there was only one developmental pediatrician for Ghana’s estimated 150,000 autistic residents.

In November, Kumapley returned to Ghana with Dr. Barbie Zimmerman-Bier, chief of developmental pediatrics at St. Peter’s and mother of a 22-year-old autistic son; and Lorell Levy, who helps diagnose elementary students with learning disabilities in the West Windsor-Plainsboro school district and is the mother of a 24-year-old autistic son. Through a series of workshops in Accra, Ghana’s capital, the three women provided information to parents, health-care providers and teachers on autism diagnosis and treatment.

“If we can equip parents and teachers with knowledge to help these individuals,” says Kumapley, “then parents are more likely to come out and admit their child has a disability without fear of being ostracized.”

Another goal of the trip was to finalize plans for their proposed Haven International Center for Special Education. The Autism Research Institute and Focus Autism Inc., a Watchung-based organization dedicated to autism-related issues, have committed to help fund the project on the outskirts of Accra.

The idea for the center sprang from MyGoal Inc. (a.k.a. My Gateway to Overcoming Autism in Life), an organization founded by Kumapley and her husband to help low-income parents in New Jersey raise their special-needs children.

The women have been invited back to continue their work. Zimmerman-Bier hopes to explore environmental causes and the prevalence of autism with help from pediatricians in Ghana. Levy is creating a student exchange program with Town Center Elementary School in Plainsboro and a sister school in Ghana.

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