CHILDREN living with autism spectrum disorder (ASD) continue to face challenges accessing appropriate educational services, a recent local study has revealed.

The study, ‘Challenges of ASD in children: Exploring coping strategies employed by parents of autistic children in Jamaica’ , conducted by researcher Daniel Brown, was centred around 10 parents of children with ASD who shared that they often face issues of discrimination when trying to enrol their children in schools.

In the research, a participant identified as Parent Two said: “In regard to schooling and education I feel like we are dealing with children of a lesser God, the response is there is no room in the inn, so it’s hard to get your child into certain schools. Schools are making it clear it is a highly discriminatory environment; schools are making it clear there are no rooms for this kind.”

Another participant, Parent Nine said, “The schools will say that they are special need schools, but their version of special need is having somebody sitting in the class with these children, so they don’t really teach them a lot. It’s really like a big day care.”

Parent 10 added: “Educationally, resources are extremely lacking, the school that she attending was, we found this side and still they are woefully lacking, both on the human resource side and physical resources.”

When the Jamaica Observer spoke with Brown, he said the research further highlighted issues that have been long talked about but no progress has been made.

Brown said apart from the difficulty in finding a school for one’s autistic child, another issue is the limited number of specialist teachers.

“Students are falling through the cracks as there is no one to identify their needs, not enough specialist teachers, no psychiatrist, no developmental specialist. There’s nothing in place in our education system that can help our children. We are talking about a generation being lost because they are branded a particular way and there’s no assistance in order to help a poor family,” Brown said.

Meanwhile, Brown said that another aspect of the research revealed a number of the social challenges parents experience often leaving them ashamed.

“When you take an [autistic] child out and they can’t help themselves but to do something, you’re looked down on and scorned. You’re often criticised that your parenting skill is bad and you don’t know what to do, when the reality is that the poor parent is suffering inside and don’t know what to do,” Brown said.

Participants in the study also shared their social interaction experiences with parents, explaining that their children are often heavily scrutinised in public by strangers and family.

“Another challenge is that because you have a child who looks physically okay, if you go some place and the child… everybody assumes that it’s because you do not train your child well, so people are very judgemental,” Parent Two said.

Similar sentiments were expressed by Parent Eight who stated, “I don’t really take them much around people, because when people see them act up they say that they are rude, they don’t understand them, so I just keep them to people who understand them.”

According to Parent Four, “In some cases some family persons don’t appreciate the sensitivity of the situation. Quite frankly in some cases it means that some family members don’t get it, so that has been one of the things.”

Parent Five said, “He still struggles to interact with other children sometimes. So he would play, but once in a while he would hit someone, just hit them out of no reason of anger, nothing like that.”

Parent Nine summarised his experience this way: “We are on the road and she is singing, people would turn around and look, some people might ask what is wrong with her. If she is in a supermarket or department store you know we will see eyes.”

Further, the parents said that added to the social challenges is the lack of support systems for ASD in Jamaica and shared that they felt more stressed out because of the lack of support systems in Jamaica for children who fall on the autism spectrum.

Parent Nine expressed that “locally there was basically limited to no resources here”. Parent Two said: “There are no appropriate social systems in the island to support it, so basically you are on your own. It is how much you put in that you are going to get, there is no extensive government programme that can help you. Most of the therapies etc, they are not covered by insurance, so it is really very difficult.”

Parent Six shared that she did not have adequate support, it was more from a familial side because she made a decision to not share the diagnosis with other family members out of fear that her son would be labelled.

She said: “I think for the most part I was doing everything alone with him.” She added: “Thinking of everybody reaction and so forth, everybody else being illiterate about the topic pretty much, I didn’t want anyone calling him handicap or saying something wrong with him.”

Moreover, Brown issued a call for special needs to be given more credence as the effects of having a special needs child are multidimensional.

“Having a child on the spectrum affects the entire family, and if the family is affected, the economy is affected. We need more services. We need more social services. We need more information inside of the health-care system. We need more schools with specialist teachers to not only identify, but also help teach. They learn differently. They can’t keep up with other children. A country is built on the backs of its citizens. If thousands of children are falling through the cracks it eventually affects the economic structure. We as a people need to take ownership of this. It’s not only affected families that are suffering, but the villages are suffering,” Brown said.