– Registered charity helping to raise awareness about misunderstood condition

BACK in 2011, what started out as a simple homeschool in a garage for three children with autism transformed itself into a school that now caters for 18 children who are living with moderate to severe autism.

According to the World Health Organisation (WHO) Autism Spectrum Disorders (ASD), commonly called autism, refers to a wide range of conditions characterised by some degree of impaired social behaviour; communication and language; and a narrow range of interests and activities that are both unique to the individual and carried out repetitively.

The Step by Step Foundation started as a small homeschool and eventually became larger and encompassed a school for children aged three to 12 and is seeking to expand further.

As a registered charity in Guyana, the Step by Step Foundation is mandated to cater for the needs of children with autism. Chairperson of the foundation, Dr. Suraiya Ismail stated, “There is no medical cure for autism, there is management rather for us to improve the condition but we can never cure it.” And this is where the foundation steps in.

Ismail highlighted that the school has 18 children with two senior tutors, five tutors and three assistant tutors. Since its initiation also, it has had the services of U.S. Clinical Psychologist and expert in autism and the Applied Behaviour Analysis (ABA) approach to autism treatment, Dr. Jim Ellis who is able to diagnose ASD and monitor the children, trains the tutors and hosts weekly Skype meetings to track the progress of the children. The children also benefit from a speech therapist and occupational therapist.

The management for children who have autism lies in the education field but a great majority lies in behaviour modification and the system used in school is called the Applied Behaviour Analysis (ABA) which focuses on an individualised-based approach to caring for each child.

“Each child has a behaviour plan,” the woman related. “It details how to reward good behaviour or control bad or disruptive behaviour.”

And using this specific methodology, there has been much to celebrate. According to Suraiya, children came to the foundation unable to speak, communicate, read, do mathematics and were disruptive. “Now we have more than seven children writing; seven reading up to Grade Four; three who are doing [Mathematics] up to Grade Four and disruptive behaviour gone down substantially,” Suraiya noted proudly. She further added that another eight children are speaking fully and a few more are speaking some words.

“This is what keeps us going,” she affirmed.

She shared one special instance when she visited the school and this one child, who had never spoken a word in his life, started to speak. “And it was like a dam had broken,” she related, “The words just came tumbling out.”

But in Guyana there is no real picture of just how many children are affected since according to Ismail, “There is no real diagnosis of the condition here.” She shared however that the foundation would like to work in the health sector to diagnose autism.

She explained, “The full diagnosis is quite elaborate, but you can do a rough and ready screening to identify those children who are likely to be autistic.” She said that there are certain signs that persons at the health centres can be trained to look out for; the child not smiling or laughing, not making eye contact or not responding as expected to his/her parents.

This however would also require the services of referral doctors or psychologists “Hopefully once we get that screening system done, we’d have a better idea of how many persons are affected by autism in Guyana,” she said.

In terms of the management of autism, the woman related that Guyana is actually the most advanced in the English-speaking Caribbean and she related that the Step by Step organization is in the process of assisting Jamaica to set up its first school.

CHALLENGES
Despite the successes of the foundation and school, there is only so much that it can do and only so many children it can render its services to.

To this end, she shared that there is a long waiting list for admission into the school because the foundation creates awareness and with awareness comes the need for someone or somewhere to care for the needs of children with autism. Seeking to extend its services, Dr. Ismail related this is what drives the new goal of building a bigger school with more facilities for the children to teach them life skills that could help them after they leave the school.

Another issue is staffing and having the staff adequately trained to deal with the children. The Ministry of Education (MoE) has however provided some redress in this regard by providing and paying for three tutors. As the foundation grows, Ismail hopes that this relationship would grow further.

The school has also been able to secure a bus and a driver, free of cost, to transport the children to and from their homes- which may be as far as Buxton on the East Coast of Demerara, to Diamond on the East Bank, to Parika- and that has caused attendance to increase dramatically.

“Parents found it hard to use public transport because people on a whole don’t understand when a child with autism is misbehaving,” she related.

Finally, as perhaps expected is the biggest challenge of raising funds needed for the operation of the foundation. The chairperson highlighted that the economic cost of one child is about USD $5,000 coupled with the expenses of bringing Dr. Ellis in about four times a year and the general cost of running the school. As a registered charity, parents do not pay for their children’s attendance but can make donation in cash or kind. The support of benevolent organisations and individuals go a far way.