Autism: the great unknown

POSTED: 07/11/14 11:25 PM

WILLEMSTAD – “Parents of autistic children often have no idea what autism is,” says Sandra Hollemans in a report by Elisa Koek on Caribisch Netwerk. Hollemans teaches at the Myrna Dovale School. Of the nine children in her care, five have a form of autism. Sometimes it dawns on parents only years later that autism does not disappear just like that – if it disappears at all.

In the meantime, the entities that focus on autism are fighting to stay alive. Due to a shortage of funds, the Fundashon Autismo Kòrsou – the autism foundation in Curacao – will soon close its doors and the future of another foundation – SOKH – that supports the upbringing of handicapped children does not look bright either.

“In 2009 an amount has been established based on fifty people, but in the meantime we have almost eighty,” says SOKH-founder Inge Boutier. “All these eighty people have to be transported, fed and supervised.”

Boutier wrote a plan last year to bring her foundation under the wings of SGR, a foundation for handicapped and revalidation care. That plan requires the approval of the Social Insurance Bank (SVB) and while all parties are enthusiast, the process takes a long time. “SVB is positive, but it wants to do more research. In the meantime, we are thousands of guilders short each month. Something will have to happen fast because it would be a pity if we have to close down as well.”

Eddy Chrestian, chairman of the Autism Foundation Curacao (ACC) is the father of an autistic child. The teacher in kindergarten pointed his son’s condition out to him. Chrestian was unable to make sense of the boy’s behavior. “I did not know anything about autism and I did not recognize it. In Curacao autism still is not acknowledged, while it is important to bring more awareness.”

In Curacao, there has never been any official research into autism. The number of people of that are known to have autism is according to Chrestian below the percentage in most countries. This could be so because many people with autistic children are moving out, but chances are also that there are more autistics on the island than the known number.

“Parents do not recognize typical autistic features,” Sandra Hollemans says. “I tell them about it but they have no idea. There is also still a taboo on special children. Parents prefer not to acknowledge that their child is special. These kids then end up in a regular school without supervision.”

Chrestian’s son was about four years old when he was diagnosed with autism. He turned out to have PDD-NOS (Pervasive Development Disorder – Not Otherwise Specified) – an autism spectrum disorder. It shocked Chrestian. “I had no idea what autism was, so I began to do my research. Then it became clear to me that my son would encounter serious problems and that his life was going to be more complicated than that of others. Of course it is tough to accept and I also understand that parents are hoping that it will pass. Usually it goes better for some time and then there is a setback. You have to accept that your child is autistic.”

Chrestian saw a lot of progress in Curacao during the past fifteen years, but he is still hoping for more. “ACC pushes for recognition of autism in the policy for handicapped citizens. Autism is a limitation in your functioning and therefore it is a handicap. There are still children sitting at home that have nowhere to go while everyone is entitled to the appropriate help and to a place in our society.”

 

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