Tuesday, August 24, 2010

Bahamas: Who will care for the autistic members of Bahamian society?

Who will care for the autistic members of Bahamian society?
Tribune Staff Reporter

Most parents fret about their children's future and safety until their offspring reach an age where they are capable of taking care of themselves. Parents are usually overcome with questions of "How are they going to manage when I am gone?" and "Who will take care of them?"

These concerns are born out of love and are generally a mark of a good, caring guardian. Most times these fears never materialise into reality and a parent can breathe a sigh of relief once the children are off to college or have landed good jobs. But think of how terrifying it is when the child is unable to care for themselves even after they are well past their teenage years.

For too many families of children with autism, this is a real concern with no solution on the horizon. Last week I came face to face with some of these parents' struggles during an autism awareness reception hosted by US Ambassador Nicole Avant in conjunction with local autism advocacy group REACH.

REACH was formed 12 years ago to provide a support network for parents of children with special needs and to increase awareness about autism. Since its inception, the group has also raised scholarship money to train Bahamian teachers to better serve autistic children.

The common link in many of those parents' lives is a deficit in adequate and affordable local treatment centres for autistic children and assisted living centres to house those children when they become adults.

"Currently there is one autistic primary school class at Garvin Tynes Primary and one high school class at Anatol Rodgers Secondary School. In the country there are only three therapists that work with the Ministry of Education and there is a very long waiting list.

"A lot of the (autistic) kids are growing older now and we need living assistance for them - we're not going to be here forever and after parents pass away there's a concern of who takes care of the kids," lamented Kim Gibson, public relations officer at REACH, and mother to a seven-year-old autistic son.

Opposition Leader and former Prime Minister Perry Christie - father of 22-year-old Adam, who also is autistic - echoed these sentiments during a recent interview with The Tribune. He added that while there have been notable advancements in special needs care over the last ten years or so, those improvements pale in comparison to what is left undone.

"Every parent's fear is, if they were to die what would happen to this child? That is the most common worry for parents of disabled children.

These parents are so committed to helping disabled children but they know that it doesn't necessarily mean a sibling or other relative will be as committed.

"That is where the state has to recognise that it has not yet put in place the kind of after care to address issues of that kind. Any government that comes to power has a commitment to address the issue but has to take a balanced approach to the allocation of resources so we are ensuring that these special persons get fair treatment.

"Sometimes they are overlooked and even though there is improvement (over the last few years) there is still more to be done," said Mr Christie.

According to American statistics, about one in every 110 children are autistic with boys three times as likely to be autistic than girls.

Local psychologist and autism specialist Dr Michelle Major, clinical director of the Seahorse Institute, thinks the condition is just as prevalent in the Bahamas.

"I don't think that they're that far off from what the national statistics are in the US to be honest with you. When we talk about the whole spectrum (of autism), I do feel that we are pretty much in the same area," said Dr Major when asked to compare Bahamian rates of autism to those in the States.

While autism numbers have grown in the United States over the past few years, something observers attribute to better detection methods, many afflicted children go undiagnosed here - either due to a lack of understanding about developmental disorders, a lack of trained doctors who can make a diagnosis, or because of the negative stigma attached to having a disability.

Dr Major has diagnosed autistic children from Abaco, Eleuthera and Long Island and says while resources are scarce in New Providence they are virtually non-existent in the family islands.

During his travels throughout the country, Mr Christie said he has encountered many children with disabilities who were not receiving proper treatment from state care facilities. He thinks this is because government agencies haven't canvassed the remote areas to identify persons with special needs.

"We have to recognise that some groups have done a lot to help. The Stapleton School (in New Providence) is tremendous asset to the country but I've always felt that we haven't done the kind of national audit that we need to find out in all of the remote areas of the Bahamas where these children are."

Those families who are fighting for social improvements for their autistic children will tell you that there is no simple solution to the myriad of problems they face every day: the stigma of having a differently abled child, the stares, lack of understanding, to the strain on their pocket books and marriages.

However, the parents, educators and physicians who tackle these problems head on and who have organised themselves without any prompting from any public agency deserve much more praise and all the help they can get. They stand as examples of good parenting, concerned and productive members of civil society.

August 23, 2010