In the absence of a range of required facilities and public support systems, autistic children in Guyana have largely been forgotten, but some parents and educators are working to change this.
Many with mild disorders are in the education system struggling to cope and those with more severe conditions have been heaped at an institution with limited services.
What started out as a simple launch of a booklet on autism that is designed for local parents with autistic children on Thursday at the National Library turned into an outpouring of concern from mothers and fathers. These parents said the education environment in the country generally has been inconsiderate of the needs of children living with the disorder for far too long.
Among the major concerns are that no structure is currently in place that focuses on children with mental disabilities and there is a lack of adequately trained teachers who understand the problems autistic children have communicating and learning.
“The focus has always been on persons with physical disabilities while many children out there including those with autism have mental disabilities. When will the system change?” a parent asked.
Autism, which is a severe developmental disorder that begins at birth or within the first two-and-a-half years of life, is a relatively unknown condition locally but many Guyanese children are living with the condition. The exact numbers are not known but increasingly, more children with characteristics of the disorder are enrolling at the special needs school on East Bank Demerara.
However, this school lacks trained teachers and the calm, orderly surroundings that are paramount among the needs of autistic children, according to teacher, Michelle Johnson who said she decided to take a job there after her son was enrolled.
She said the major problem facing the school is the absence of a medical specialist since many of the children occasionally require medication and no one is on hand to prescribe the correct drugs.
Johnson revealed that a while back, she lost a child who was scheduled to undergo a CAT scan and died minutes before due to a wrong dose of medication. She said the child’s behaviour was aggressive but was in keeping with autistic characteristics prior to his admission to the hospital so doctors had to find a way to calm him.
Her concern trickled across the room as parents opened up about encounters they had with doctors and teachers over their children. One man said he found the attitudes of many teachers who are entrusted with special needs children to be grossly off putting.
The National Commission on Disability (NCD) launched the booklet on Thursday to equip parents with information on autism and to assist them in identifying the condition earlier since most autistic children are perfectly normal in appearance. However, they spend time engaged in puzzling and disturbing behaviours, which are markedly different from those of typical children.
Chairman of the NCD, Evelyn Hamilton said there seemed to be a dearth of information on autism available in Guyana though there are cases of the condition here.
She said the booklet has basic information and can in no way be viewed as a comprehensive publication. She noted that booklet is a work in process, adding that other booklets are likely to be published in the future by the commission.
The four-page booklet defines autism and its characteristics and looks at the three areas that are important in order to understand the condition. The booklet briefly addresses the categories of autism and provides parents with information on where to access additional information.
Mirva Howard, a Voluntary Services Officer (VSO) at Cyril Potter College of Education, who was on hand to conduct a rap session with parents, revealed that she is currently training teachers how to care for children with special needs. According to her, an encouraging number of the students at the college are choosing the course and some are considering majoring in it.
She said it is very likely that there are children with mild autism that are in the mainstream education system in Guyana, who should be receiving special attention. Howard noted that there are a few autistic children who are gifted, but pointed out that they are rare in every country. She added that it is critical the education, health and social services work together in addressing the needs of autistic children in addition to the many others with mental disabilities.
A group of parents currently working under the Parents and Educators for the awareness of Autism was on hand on Thursday to recruit persons interested in working towards changing the system. Among their initial aim is to form a register of persons living with autism. (Iana Seales)
