DR RADICA MAHASE
“MY son is 20-years-old and I cannot handle him. He gets very aggressive and he’s bigger than me so I can’t control him. The doctor prescribed medication to calm him down but that doesn’t always work. Also, it gives him insomnia and sometimes he doesn’t sleep all night. Then the next day he becomes agitated and it’s very difficult to calm him down.
Sometimes he damages things in the house. He doesn’t mean to do it. It’s just that when he gets these aggressive meltdowns, he doesn’t know what he is doing. Everyone keeps telling me to put him in a home somewhere. I know someone who has a boy like him, a few years older, and the boy is in St Ann’s but I can’t bring myself to do that. It is really becoming difficult to take care of him.”
Alex’s father stated, “I know if I had the money to pay for him to go to a private school and for therapy when he was younger, he would be able to function better today. I worked so hard to provide him with the basics but I just couldn’t afford to pay for school and therapy. When he was younger, I used to take him for one hour a week of therapy but then I lost my job for a while and I couldn’t afford it anymore. I just couldn’t take care of a child like him.”
Alex is not the only young adult with autism in TT who is in this situation. He is not the only young person with special needs who did not have access to an education or to different therapies and as a result ended up at home with serious developmental delays and behavioural issues. He is not the only young adult hidden away in private because parents/caregivers are unable to take care of them when they have meltdowns or become aggressive or are afraid to take them out in public.
How do Alex and others end up in this situation? Because when they were children, they were not given the help they needed to develop mentally, intellectually or emotionally.
To help children with special needs develop into young adults who can function in society, they must have equal access to all the tools they need for development. Education and therapy are the most crucial tools for intellectual development. Education provides an avenue for personal growth of a child – and in this case it doesn’t necessarily have to be a formal education, cramming a syllabus to pass exams but one that is tailored to the child’s needs.
Every single child can learn but in their own way and at their own pace. It is the basic right of every child to equal access to an education. When public schools are inaccessible and parents cannot afford to send their children to private schools as in Alex’s case, then the child is denied an opportunity to develop intellectually and this sets the stage for serious issues later on in life.
It is the same with access to therapy. Therapy in general helps with behaviour, communication and social skills, speech, emotional issues, etc. When children with autism/special needs do not get the education and therapy they needed, they grow up to be young adults who have difficulties with self-regulation, may become aggressive and overwhelmed as we see with Alex. That is why it is so important to make the various therapies accessible through the public healthcare system.
In order to help children, develop into young adults who can function in society we need to provide them with a solid foundation dominated by educational opportunities and access to therapy and ideally, these should be provided within the public education system. When they grow into young adults, they should have access to training so they can develop their skills/talents; to employment opportunities so they can earn a living and feel a sense of self-worth; and to counselling services and a strong support system to help them live as viable members of society.
Alex’s story may have been a different one if he had received the education and therapy he needed when he was growing up. To ensure that the stories of children with autism/special needs now, who are growing up to be young adults, are more positive ones, TT urgently needs to implement education and therapy policies and plans to cater to their holistic development.
Dr Radica Mahase is the founder/director of Support Autism T&T