Autism in Haiti
Imagine everything you know about autism. ABA therapy, mercury/vaccine controversy, no insurance coverage, Autism Speaks and whatever else comes to mind. I’ll give you a second so you can run through all of it through in your head.
Now eliminate it all. That’s autism in Haiti.
There was a clinic in Los Palis, it wasn’t much, but it was the only place in Haiti where once a week children with developmental disabilities gather to receive treatment. “It’s not there anymore,” says Marco Hillien, brother of Bishop Simon-Pierre Saint Hillien, who is currently stationed in the Hinche region of Haiti. “Nothing’s there. Right now they are just trying to track all their patients. They are looking for all those who were suffering from various illnesses before the earthquake.”
As the estimated number of deaths climbs to 50,000, Hillien only knows that is brother is a survivor. He’s received word that his brother Simon is helping those in need. “I was able to make contact with the church, but other than everything we’ve helped build is no longer there and that he’s ok, I know very little of anything else.”
Hillien made the move to New York in 1999. His brother was appointed a Bishop in Haiti in 2002. “I was extremely proud of my brother and of course any help I could be to him I would be,” he says. That call came in 2005 when Simon asked him to help start a program for children with developmental disabilities. Marco’s son is now 12 and was diagnosed with autism when he was 3 years old.
Hillien made two trips a month to Haiti that year. “We set up at a medical clinic in Los Palis,” he recalls. “My job was simple. Connect with parents. Make them understand that they weren’t alone and that there was a way to communicate with their children. We diagnosed 17 children with autism that year, thanks mostly to a group of missionaries who worked with special needs children around the world.”
Resources were scarce, but Hillien says that each month provided hope where there was none. “There’s no protocol. There’s no system in place for children with disabilities. For the most part when we met a child with autism, the parent was convinced there was an evil spirit that needed to be prayed away. Fortunately for them Simon knew that praying alone wasn’t going to bring them the help they needed.”
“I have the luxury of moving to a school district that best fits my child’s needs,” says the former French citizen. “When my family moved to New York there was an excess of everything. Even when Daniel (his son) was diagnosed, we knew we had options.”
Options, Haitian citizens couldn’t even dream of. “Over the last three years we felt we were making real strides,” Hillien says. “The children that were coming in regularly, their parents started to understand what their child’s behaviors meant. We had built a therapy room with sensory toys that were donated and we were able to translate some books so that parents could understand what their children were facing.”
Hillien says that through four years, the clinic had served over 5,000 children with developmental disabilities. “I don’t have specific numbers, but certainly it was growing each year,” he says. “I’m hoping we can serve them again one day.”
What’s the next step for Hillien? “Right now I’m sitting tight with my family. I’m praying and hoping my brother is well. Once we can make contact I’ll figure out the next steps from there. Hopefully I can be reunited with him soon and we can begin building all over again. I’m praying for all the lives that were lost and their families and of course all those desperate for food, water and shelter, but I’d be lying if I said my thoughts are not with those we’ve helped over the years. I’m looking forward to getting back there.”
Courtesy Spectrum Publications