An Urgent Call To The Government Of Jamaica
By Peta-Gaye Forbes-Robinson
The Centers for Disease Control and Prevention (CDC) classify autism spectrum disorder (ASD) as a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviours or interests. They may have different ways of learning, moving, or paying attention. It is important to note that people with autism can experience major challenges right throughout their lives.
As it is in many parts of the world, autism has become a great problem, as its prevalence is on the rise even in Jamaica. There have been numerous efforts to advocate for and spread awareness in Jamaica and throughout the Caribbean; however, there still continues to be a notable limitation of support for children with autism and the families of children with autism. I do not wish to devalue the effort of any one person or group, nor do I wish to tarnish the government’s reputation in any way, but rather, I want to explore the major challenges concerning this issue and the possible measures or changes we could make to improve the conditions of this segment of society.
I have had major challenges since my son was diagnosed w
ith autism. My family was in a limbo and clueless as to the next step. We experienced insensitivities from all angles: churches, government bodies, private corporate entities; schools rejected him because, at 4-years-old, he was expected to be potty trained; hospitals, etc. We had difficulties keeping up with the financial responsibilities of private education. Even when we discovered the possible resources available in the country, such as schools, assessments, therapy, shadow costs, etc., we were waitlisted for years. Despite these challenges and feeling like we were caved in and pushed aside, we managed to get past the hurt of having a child who seems to be considered insignificant.
FINANCIAL BURDEN
The cost of autism interventions such as Applied Behaviour Analysis (ABA) Therapy and Speech and Language Therapy is usually expensive, with prices ranging from $7000 to $10,000 per 45 minutes to an hour. Imagine your child’s minimum therapy hours for success are 120 hours per month, which means 4 hours minimum per day, or 4 hours x $7,000 = $28,000 per day for therapy. Imagine, along with that, the need to pay tuition at a minimum of $85,000 per semester, not forgetting to add the shadow cost of $55,000 minimum monthly.
We do take into consideration and appreciate the current resources at hand, of which many are unaware. We take note that the Ministry of Education (Special Education Unit) does take care of the tuition cost or the shadow cost ($40,000 monthly), whichever is the parents’ preference, and even this help is wait-listed. While this is absolutely appreciated, parents are still having challenges meeting the educational needs of their children. Some families are not
earning more than the minimum wage. The struggle is real; it is a tough battle, and we need the government’s above-and-beyond kind of help to gallop.
SHORTAGE OF TRAINED PROFESSIONALS
I have proven that the number of ABA, speech pathologists, and occupational therapists in Jamaica is insufficient to meet the demand of autistic clients. Again, the question arises about unfair ratio analysis: too many autistic cases to very few autistic specialists. This hampers the quality and accessibility of services for children with autism.
A video was taken of my son at a prep school that has a special education programme. I could see fear, discomfort, frustration, confusion, and alienation in his eyes. My heart cried to hear him reveal who stood behind the camera, and my stomach was ripped when I saw who restrained him. I was fearful, not only for my son, but because I immediately saw many other children who probably had suffered the same treatment yet were so innocent.
My son said, “Mommy, the teacher said to the other children, ‘Don’t play with…’ (he called his name), and I sat in class alone.” He then said, “Mommy, no, Mommy, I don’t like school, I don’t want to go, and I don’t want to be alone. My brain, Mommy, I need a new brain.” This is an eight-year-old who is sharing his frustration and sorrow with the level of insensitivities that met him at school. I received a report after that detailed that as he battled through acclimatising to this new school and was confused as to why no one seemed to understand him, he took a pencil and began stabbing at his stomach, saying, “He doesn’t like his life; he wants to die.” This is a child who has been looked at and frowned at because of hyperactivity. He learns pretty fast, so he will get bored if given a task he already knows. If you do not understand the autism language (techniques and strategies in behaviour modification), you will have a challenge getting him to comply or even to do his work. Without proper training, the high possibility of minor to major regression, even suicide, arises.
Now I know many who are reading this—if you have children, whether they have an amputated arm or leg, are visually impaired, have ADHD, or are autistic, even so-called ‘normal,’ you would understand why it took me this long, since September, to write this article. I knew my goal was not to devalue or draw negative attention to anyone or institution, but I sincerely and passionately desire change. I see the need for reformation.
ADVOCATING BODIES
As it relates to financial struggles, it is not that, as parents, we do not want to work and earn our honest money; we do. But just like you, we chose to honour our first responsibility, which is to our children, so some of us have had to give up our jobs in order to school our children ourselves.
Thank God for the churches with which I am associated. They have truly stepped in, but this is not about me; it is about the many other parents, some of whom I know, who are deeply struggling, some who think death is the best option, or some who are migrating overseas to get the help they desperately need.
People are suffering and suffocating in Jamaica as it relates to special needs, with an emphasis on autism.
In the autism community, because the numbers are rising so drastically, we need others to join: corporate entities, government entities, religious groups, and non-profit groups. Everyone needs to partner together to help the autism community. If more influential companies could do sigma runs or autism treats for children all over Jamaica, this would make a whole lot of difference.
We know what love feels like; we know when we are being loved. It is time for these children to feel love coming from you through these initiatives.
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With a degree in Business Administration, Peta-Gaye Forbes-Robinson has always been interested in catering to the needs of persons with disabilities, teaching, and observing what causes people to behave the way they do. She has done much work in the field of autism and can be reached at [email protected].
