Limited info on Autism spectrum disorder in Tobago

THE EDITOR: Of the approximate 1.4 million population of TT, a majority undoubtedly were unaware that April 2 was World Autism Day, due to the lack of awareness and information.

Autism spectrum disorder (ASD) is referred to as a spectrum because each individual’s experience is unique.

The spectrum covers a variety of developmental disabilities caused by differences in the brain. These result in problems with social communication, interaction, restricted or repetitive behaviors, ways of learning, moving, paying attention and how they see the world.

Autism, however, is not a disease that can be caught; individuals are born with it. Its cause is not fully understood, nor is it clear why some develop it while others do not.

Research proves it is less prevalent in females, with the genes usually inherited from the father. Furthermore, to date there is no cure.

The goal of treatment, which generally includes other medical and mental conditions, is to maximize the ability to function by reducing autism spectrum symptoms, coupled with support, development, and learning.

Culturally, slow learners are stigmatized as dunces and signs of idiosyncrasies are denounced. Disruptive behavior or hyperactivity is often misinterpreted as troublemaking or disobedience, resulting in reprimands, being told off, or receiving corporal punishment.

When, in fact, some of these behaviors could be indicators of ASD.

The State and society must take an active role in supporting individuals with ASD rather than relying solely on charitable organizations.

The State should address our community’s unique needs and the education system should ensure that enough specialist teachers meet these needs.

Equally, it is essential to educate the general population and provide accessible information to foster empathy and inclusivity. Tobago, however, sadly lacks easily accessible information specifically for families seeking testing and support.

Thankfully, Tobago is blessed with Happy Haven School in Signal Hill, called “Autism Tobago.”

The school caters explicitly to children with special needs. Its mission is to create a haven that enables these children to achieve their maximum potential, providing opportunities for stimulation, therapy, education, and training.

Families concerned about their child with suspected autism and lacking development skills or behaviors can look for the following:

• A child not responding to their name

• Avoids eye contact

• Rarely smiles, if at all

• Gets very upset if they do not like a particular taste, smell, or sound

• Has repetitive movements such as flapping their hands, flicking their fingers, or rocking their body

• Does not talk as much as other children, if at all

• Repeats the same phrases

• Likes a strict daily routine and gets upset if it changes

• Has a very keen interest in certain activities

• Has learning difficulties in reading and writing

• Is a loner and finds it hard to connect even with family members or to make friends, preferring to be on their own (the list is not exhaustive)

Meeting a child I suspected had ASD, I wanted to help. I sought information and spent two frustrating hours making repeated calls, none of which was answered, or an answering machine requested leaving a message.

My first port of call was the Division of Education, Research & Technology, but the staff member could not help.

She stated she was new and her manager was on holiday. However, she offered three extensions, none of which was answered. Next was Autistic Tobago. Again the call was unanswered. Being part of Happy Haven School, in their defense, they were on their Easter holiday break.

I contacted my local health center, but this call also went unanswered. Calling the Scarborough Hospital Pediatric Department, I was transferred to a doctor and finally received the information I sought. She outlined the procedure parents seeking ASD testing should follow.

In the first instance, parents should attend their local health center to obtain a referral letter. This is then brought to the hospital’s Child Development Clinic, where the child is placed on a waiting list (she emphasized the list at present is very long).

She also highlighted that there is no specialist(s) in Tobago to undertake testing, but one comes from Trinidad once a month.

I hope this helps the parents frustrated by the system and lack of special needs resources.

ROSALIND HARRIS

via e-mail