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Autism Chronicles from Jamaica

My name is Maia Chung and I am the mother of three sons, Wickham, age 14, Cinquain, age 12, and Quinn, age 10. Quinn has autism. We live in Jamaica where autism is little understood. If you were to conduct an unofficial survey amongst the affected, you would find that autism is a health issue that is minimally addressed by the Jamaican government. This is scary and disheartening for parents like me who form the client base of the Maia Chung Autism and Disabilities Foundation, which I founded in April 2008 in response to the little information and support available to families affected by autism in Jamaica.

As a developing nation, our statistics are not always up to the minute and despite not yet having a definite prevalence figure in Jamaica, we still have cause for concern. Anecdotal research conducted by the Maia Chung Autism and Disabilities Foundation sees the growth being logged empirically. A Jamaican psychiatrist and grandfather of two autistic children stated that when he was a young medical student in the 1970s, if the national health records logged even two cases of diagnosed autism annually, that was considered a lot. Fast forward three decades later to 2010: there are now hundreds of cases being diagnosed annually, a fact confirmed by the premier authority on autism in Jamaica. She has told researchers of the Maia Chung Autism and Disabilities Foundation that common opinion amongst health professionals here is that there may be just as many autistics undiagnosed as there are diagnosed. This could be attributable to the complexity of the disorder which has so many varied manifestations.

Many Jamaican parents do not even know what they are facing. A high level of illiteracy among Jamaicans worsens matters, as many people lack the option to read up on what they may instinctually feel is wrong with their child.

When my son was diagnosed seven years ago, my husband and I were fatalistic in our acceptance. Albeit without the knowledge that we are now privy to, I would say we were depressed, but not hopeless or spiritually trampled. In fact, after two years of interaction and research through the Maia Chung Autism and Disabilities Foundation, I feel more scared and miserable now than I did then.

Having begun this research, I have realised that with the apparent worldwide explosion in number of autism cases, all of the affected need to come together to form some collaborative approach and reach a consensus regarding how best to address the needs of this population. This becomes more crucial everyday, and is underscored by the World Health Organisation’s 2009 estimate that every 20 minutes somewhere in the world someone is diagnosed with autism.

As I grow in my (admitted) limited understanding of the disorder, my position and the position of my organisation has become that the globe needs to place equal focus on research around the cause and the cure. Meanwhile there should be an increased focus on creating the framework globally for inclusion of this rapidly increasing population. Autism affects every race, gender, and socio-demographic quadrant. This is an everybody-everywhere issue and as all affected slowly come to grips with the issue, the time is now to start creating a world that includes this cohort as great and as varied as it is.

For some forty years, scientists around the world have been preoccupied with finding the cause and cure. Currently research seems to point to genetic predisposition, environmental triggers, and alleged links to increased vaccination schedules. If after four decades of research, nothing specific can be inserted, eaten, or injected to stop autism in whomever it is manifested, my belief is that it is imperative to use brain power and financing to see to the development of paradigms and frameworks globally to ensure that persons with autism receive their human rights.  It is also imperative that they are included in and are given equal opportunity to contribute to their world.

Currently, of the fifty states in the United States of America, only roughly 14 states offer families comprehensive health insurance support for addressing autism-related health issues. If at this time only 14 states in a first world country like the US have health insurance provisions for families affected by autism, it seems that “the world authorities” are not understanding the fact that we all need to be pro-cure and pro-inclusion when it comes to the autistic global citizen. Given the increase in numbers reported in journals like the American Journal of Pediatrics, it seems safe to assume at this time that autism is an epidemic about to become a pandemic.

I am not aware of any legislation in the making in Jamaica which will speak to the growing number of cases coming to the fore here and how Jamaica plans to address the issue. Our Foundation is calling for a multi-government ministry approach in Jamaica (we are on the Westminster political model), in which the Ministries of Education, Health and Social Security will create a task force to develop a way for the nation to deal with this epidemic in Jamaica.

We have no fully state-funded schools or therapy centres. We need these due to the high levels of unemployment here and the large numbers of people who cannot pay for healthcare. If a heavily state-funded intervention were offered, many families affected could be helped.  The absence of any significant government interventions in this area to date is resulting in the financial ruin of families and in the crumbling of marriages and partnerships under strain. The majority of autism services, educational facilities, and therapies are only available through the private sector which makes the services and help expensive.

The clients of the Maia Chung Autism and Disabilities Foundation repeatedly seek help in subsidising care, medication, school fees, and even groceries. Because a lot of our clients cannot afford the services of a private care facility, they are unable to work, resulting in the need for additional financial support to cover rent, utilities, and food.

The Maia Chung Autism and Disabilities Foundation is calling for fast tracking not just here in Jamaica but on the global scale in agenda setting, policy writing, and legislation to address the following questions: Where will the autists work? Where will they live?  Which companies will insure their needs?  Which governments will ensure their inclusion into all areas of life? Which nations will collaborate to see to the protection of this neuro-diverse population?

Research has revealed that autism is a brain disorder that affects all races, genders, and ethnicities. Ergo it is reiterated that this is a world issue. Without knowing the cause, how do we cure or prevent autism? This is what makes it so dangerous and in need of an intense and urgent focus by the world.

As of June 2010, the Maia Chung Autism and Disabilities Foundation is not satisfied with the feedback which it has received from Jamaican government officials. Two or three autistic children having their school fees paid by the Education Ministry is simply not adequate.

While the approach to autism care and service provision has to be a multi-pronged community approach, legislative changes and the coordination of all of the efforts geared toward dealing with autism in Jamaica has to come from the head of the nation: our government.  Budget allocation to subsidise education of autistic children on a large scale will have to come from government in collaboration with the private agencies already involved. If the government is without ample budget to create its own facilities, it can use existing facilities and craft strategies that will aid the proliferation and success of these facilities at minimal cost to the Jamaican government. We also need government funds to conduct a wide-ranging survey to determine the true extent of the disorder and its impact on the nation.

Well-intentioned private sector caregivers cannot give away their services, and with the specialised nature of their services, costs are high. If they do not charge upwards of 30-thousand per student per term, they will have to close. This has already happened to several Kingston-based autism schools.

At times, when parents cannot pay, students are taken in by the schools due to the obvious need exhibited by students. When it cannot sustain its activities any longer, the school ends up paying the ultimate price: closure. There are also clients of the Maia Chung Autism and Disabilities Foundation who have had to be pulled from school or de-registered as a result of their parents no longer being able to afford the autism speciality school fees. There are also those who put their children in schools for neurotypicals. This is quite common and does not typically work in favour of the autistic child.

To date, we have been awaiting a subvention from the Social Security Ministry. It issued one to the Foundation in 2009 which kept two to three students in school. We need an annual input to help our clients pay for school fees and treatment. Despite sending in our request last year to fall in line with the new fiscal year, we have had no response to date. In fact while writing this piece, I called the State Minister responsible for this issue and he was “in a meeting.”

So if we as citizens are showing that we are willing to help ourselves by being proactive and forming associations, schools, and foundations, then to whom should we look for help? In a vacuum, these efforts will not be effective, especially in this global recession which has seen most donors to Jamaican non-profit and non-governmental organizations cutting back on their donations. We are not facing a very upbeat future.

Maia Chung
Founder, The Maia Chung Autism and Disabilities Foundation

This is a modified version of an article which first appeared on the Autisable Blog.

The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.

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