Standing at six feet, two inches tall, 14-year-old Devane Leehue doesn’t always act his age. He was diagnosed with oppositional defiant disorder (ODD), a childhood disorder on the autism spectrum that is defined by a pattern of hostile, disobedient and defiant behaviours directed at adults or other authority figures.
The disorder also alters Devane’s level of thinking. According to his mother Leslieann, doctors told her Devane’s brain won’t always work at his age level, So at times he would believe himself to be younger and would act as such.
As a result of the disorder, Devane has been bullied by classmates since primary school. This caused him to also develop psychosomatic manifestations, in which he fell ill whenever he was near the school. Leslieann says he has even contemplated suicide on previous occasions.
Devane is now a Form One Morvant Laventille Secondary student, but the bullying only lessened after his mother visited the school and had another conversation with his teachers and the school’s dean, with whom she discussed her son’s condition.
Leslieann told Guardian Media she noticed Devane would not respond to her when she spoke to him at two years old. In her ignorance, she feared he might have been hearing impaired, so she took him to the doctor who found nothing wrong with the child’s hearing and “comforted” her by saying “the child was just ignoring you.”
As Devane grew, she noticed his attention span was very short, but even then she made no real fuss of it. Even after recognising that whenever he was trying to grasp a lesson he would start humming and tapping his fingers loudly on any surface he could find, Leslieann still did not view this as a serious red flag.
It was only after his Standard Two teacher at Moulton Hall Methodist Primary School kept insisting something was wrong and advised Leslieann to get Devane evaluated by a doctor via the Ministry of Education’s student support services, was it officially established he was on the spectrum.
With this diagnosis, doctors advised that Leslieann talk with Devane’s teachers to institute a routine schedule that would help him develop a uniformed approach to academics. The same plan of action has been implemented by Morvant Laventille Secondary teachers.
“His teachers had said then he is extremely brilliant and if it weren’t for his disorder, he could have sat the SEA exam in standard three,” Leslieann boasted.
But dealing with Devane’s disorder has been very challenging for Leslieann, who also has a disorder which affects her joints and left her unable to work since 2014. It took an emotional, financial and psychological toll on her family and eventually led to her separation from her husband. In fact, she said had it not been for her eldest son Devante, 21, who has been their rock, she might have had a breakdown already.
“There aren’t enough support services in place for parents of children with disabilities, or even for the children themselves. And what little is in place, they are completely inadequate,” Leslieann argues.
At the same time, she notes how grateful she was to the Child Guidance Clinic that really tries to assist in the well-being of parents and children dealing with disabilities.
“A friend of mine who is a parent of two children with disabilities told me about the Child Guidance Clinic. They provide support group sessions for parents of children with disabilities and coaching on how to deal with the various complexities that come with the caring for a child with disabilities,” she explained.
As the world gets ready to commemorate World Autism Day tomorrow, the 45-year-old Morvant resident is also asking the authorities to be more mindful of this community, saying there is a lot more to be done by the various bodies tasked with working in their interest.
“Other than a selected few NGOs that work very hard with very little help, there isn’t a public institution that truly aids this community. Parents are left to fight it out on their own. There aren’t enough trained professionals in the school system, nor are there enough trained professionals for therapy and if you don’t have money to obtain private care, then you and your child are left to suffer.”
She said there is also a need for more counselling centres conveniently placed across the country so parents and children could have better access to them.
“Most of us had to leave our jobs to care for our children because they literally are left behind and forgotten about by everyone else.
All I am asking, and I believe I speak for many parents like myself, is to have better support services for us and for our children, so they can have a chance at living some aspect of a normal life.”
No local data on autism—specialist
In T&T, there is no existing data on how many children are diagnosed with autism or any disorder on the spectrum on an annual basis.
According to Dr Prithiviraj Bahadursingh, consultant community paediatrician at the South-West Regional Health Authority (SWRHA), our figures are currently extrapolated from the global statistic which is one per cent of the population.
Asked if T&T had adequate support systems in place, Bahadursingh said no, adding this was not just in the case of autism but generally for people with all form of disabilities. He said the existing support services needed much bolstering to be effective.
“Speech and occupational therapy (OT) are not available in any major way in Trinidad. Tobago has speech and OT in its public service but even that needs improving, particularly with the number of available therapists.”
Additionally, he said there was a need for a lot more teacher aids in schools.
Asked just how strenuous it was for parents of children with disabilities, he said it is very challenging as it creates a range of emotional disturbances, from emotional to psychological and financial strains. He said they all impact the family. Depending on the therapy needed and, in some cases, one child may need several, Bahadursingh said it is very costly, even for middle-income families.
“The special child grant is $1,500 per month but a lot of families had their grants cut last year and this year. It’s supposed to be changed to a disability grant which has not yet been properly manifested.”
He said a lot of couples break up when dealing with special needs children because of the financial strain and other demands.
Bahadursingh said there was no identifying cause for autism or any disorder on the spectrum and although some research has suggested there is a genetic predisposition, the percentage is very low.