Autism rates have increased in recent years and many are working to raise awareness about the condition in the United States and beyond. Genevieve Kumapley, Barbie Zimmerman-Bier and Lorell Levy are mothers of children with autism who recently took a trip to Ghana to work with people there to raise awareness and train educators, parents and public health officials on the early identification, therapeutic interventions and supportive strategies for the treatment of children with autism. The women, who are doctors and educators, spoke with NJ Today Senior Correspondent Desirée Taylor about their creation of Haven International Center for Special Education, an autism and developmental disabilities treatment and training center in Ghana.
Kumapley is from Ghana and said there are many children and adults with autism there just like in the United States. “We wanted to be able share our hope, our victories, our story with those who are there and also to be able to share resources that are here in the United States with them,” she said. “So being able to work there with my friends, my colleagues, to Ghana was just an amazing experience.”
Developmental pediatrician Zimmerman-Bier said she found the struggles that families dealing with the condition are very similar. “It doesn’t make a difference what economic class you’re in, where you live. It’s a burden for families,” she said. “And that families need to understand the types of resources that are available and have a sense of hope and I think being part of that process was very helpful for me as a pediatrician.”
Levy said officials don’t really know how many autistic children are in Ghana because of a lack of statistics. She said there are just two developmental pediatricians in Ghana. “There’s very few resources for getting out and figuring out how many kids there are with the disorder,” she said. “And that’s one of the things that we want to eventually partner with the people of Ghana to help them figure that out.”
Kumapley said the primary goal in traveling to Ghana is to collaborate with that country’s government and their educational services. “Our goal really was to begin to establish a center that will provide training opportunities for teachers, health care professionals, parents. And so what we did was pilot exactly what we do. So we went without a building, but we went with the resources. And we were met with a lot of great responses,” she said. “We had the media there. And we also had the deputy director of the Ghana educational services welcome our involvement with them to be able to do the education and training of individuals with autism.”
Zimmerman-Bier explained that the attitude toward autism in Ghana is similar to what it was in the United States 20 or 25 years ago when her son was diagnosed. “There’s a lot of misconceptions about the causes. I think that sometimes the families feel somewhat shunned and they can sometimes be mistreated. But again, there’s a process to understand that and there’s hope because we had a lot of the same misconceptions here,” she said. “We’ve done a lot to change that, the way that people look at individuals with autism here.”
Levy said adults with autism are also an issue in the United States and Ghana. “One of the things we want to do with Haven is to create a place where adults can have a living space and also learn vocational skills so that they will have a place to be and something to do in the world to give back so they can be a part of society,” she said.
Kumapley said she greatly enjoys working with Haven International Center for Education. “It’s such a joy because you see the hope in the eyes of the people,” she said. “One of the focus points for me personally was to be able to create an environment where my son Nicolas will have an opportunity in the future.”
Vocational skills are critical, according to Kumapley, and Haven has partnered with several organizations to help those with autism learn how to use their hands and create basic tools like place mats, bags and other items to decorate their homes.