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Autistic children playing the waiting game

...parents under pressure, no schools, no services
Published: 
Sunday, May 11, 2014
An autistic child attends a music class at the Dora Alonso Center for autistic children in Havana in 2008. Reuters File Photo

Five schools for special children were to be built. Prime Minister Kamla Persad-Bissessar said in May 2012 that special training for teachers was also necessary to address the children’s educational needs. In 2013 at the 37th general assembly meeting of the United Nations Educational, Scientific and Cultural Organisation (Unesco), president of the T&T National Commission for Unesco and Education Minister Dr Tim Gopeesingh then requested that the organisation engage the UN system to “pay specific attention to children with special education needs.”

 

But Dr Radica Mahase, founder of Support Autism T&T, said much more needs to be actually done for autistic children here, despite the good work in raising awareness. Mahase, a historian and senior lecturer at the College of Science, Technology and Applied Arts of T&T (Costaatt), said in a phone interview with the Sunday Guardian that not much has translated into actual policy and services for autistic children. With last month—April—being autism month, Mahase said she hopes research, policy and services will soon be provided for autistic children in T&T.

 

From caregiver to autism activist
Her passion for getting concrete assistance for children with autism came from her desire to help her autistic nephew, Rahul. She said, “I am a caregiver of a child who is on the spectrum. My nephew Rahul…developed as any normal child for the first two years of his life…We only suspected that there might be a problem when we found that he was taking too long to talk.
“By the time he was about three and a half, four years old, we knew something was not right. At that point we did not have a label, and we wanted to know what it was; we needed to hear that label…”

 

She said the family searched for anyone whose child displayed similar developmental challenges. For two years, Mahase said, the family was unable to receive an answer or name for Rahul’s condition. Before the diagnosis of Rahul’s condition in May 2012, the family had always been told by schools that there were no facilities or staff to deal with him—staff were untrained to deal with special needs children. Her desire to find help led her to Prithiviraj Bahadursingh, a speciality community pediatrician at the South West Regional Health Authority (SWRHA). She provided the family with a list of therapists, special schools and other resources. This enabled the family, after two unsuccessful attempts, to find a speech therapist who came to the family’s home and worked with Rahul.

She said of the work with the therapist: “After three months of therapy, one hour for the week, we got the miracle we were hoping for: she worked with Rahul, got him to settle down, and important to us—she got him to start going into buildings, anywhere.” That was a year ago. Today, Mahase said, at nine years old, Rahul is still non-verbal, walks on his toes and is not fully potty-trained, but “he wears sandals now and attends Autism Services (a school) in San Fernando.” 

 

Research is vital

Mahase identified research as a key component in truly being able to assist autistic children. She said these children need trained teachers and nurses. Services such as speech therapy is not readily available in the public health system for autistic children. Mahase said she hoped that the promises made by the Government would soon become a reality. She said she hoped that services for autistic children would begin from early childhood. Many parents of autistic children, she said, cannot meet the costs of caring for an autistic child. Meghan Lee-Waterman, an autism education specialist who holds a Masters in Special Education with a focus on autism, in a phone interview with the Sunday Guardian last week, said general awareness of the issue has been growing. Lee-Waterman also said facilities in the public sphere needed to be put in place. Many speech therapists, she said, were only available privately and public grants were only given for up to $800. While she acknowledged the Government’s promise to construct schools for special needs children, there is a need for more schools, she said.