Autism Chronicles from Jamaica
By Maia Chung
My name is Maia Chung and I am the mother of three sons. They are Wickham 14, Cinquain 12 and Quinn 10.
Quinn has Autism.
We live in Jamaica which is located in the Caribbean for those of you who have never heard of this country.
In Jamaica Autism is little understood …and if you conduct an unofficial survey amongst the affected, you will find that Autism is a minimally supported health issue by the Jamaican Government.
This is scary and disheartening for parents like me and others who form the client base of The Maia Chung Autism and Disabilities 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 number of the cases that are now 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 illustrated by a statement from Dr. Charles Thesiger a Senior Consultant Psychiatrist in Jamaica and grandfather to two Autistic children - “in the 1970s when I was a young med student, if the national health records logged two cases of diagnosed Autism annually, that was considered a lot…”.
Fast forward to 2010 – three decades later, there are hundreds of cases being diagnosed annually, a fact confirmable by lead researcher and premier authority on Autism in Jamaica, Professor Maureen Samms-Vaughn of the University of the West Indies.
In fact she has told researchers of The Maia Chung Autism and Disabilities Foundation – that the common opinion among health professionals here, is that for as many diagnosed - there may be as many undiagnosed.
This could be attributable to the complexity of the disorder, that has so many varied manifestations, many Jamaican parents and relatives do not even know what they are facing.
A high level of illiteracy among Jamaicans also feeds this fact, as reading up on what they may instinctually feel is wrong with their child is not an option, since they cannot read.
When my son was diagnosed seven years ago, my husband and I were fatalistic in our acceptance.
Albeit without a lot of the knowledge we are now privy to, I would say we were depressed but not hopeless…not 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 (lol).
Having mounted this research however I have realised that with the apparent worldwide explosion in growth of Autism cases, all the affected need to come together, to form some collaborative approach and consensus as to how to address the needs that are arising, because of Autism.
This becomes more crucial everyday, and is underscored by the World Health Organisation’s (WHO) confirmation in 2009 - that every 20 minutes someone somewhere in the world is diagnosed with Autism.
As I grow in my (admitted) limited understanding of the disorder – I and the position of my organisation – has become that the globe needs to place equal focus on the research around the cause and the cure.
Meanwhile there should be equal and possibly more focus on creating the framework globally to include this rapidly increasing breed of person.
This is specifically because Autism affects every race, gender even though it’s more men than women and any socio-demographic quadrant.
This is an everybody, everywhere issue and as all affected slowly come to grips with the issue, and the time to start creating a world that includes this cohort as great and as varied as it is – is now.
For some forty years scientists around the world have been preoccupied with the cause and the cure.
Currently a narrowing down, with some plausibility seems to suggest the following, genetic predisposition, environmental triggers and links allegedly to increased vaccination schedules.
My thing is, if after four decades nothing specific can be inserted, eaten, injected to stop Autism in whomever it is manifested, this is clear call that focus is imperative to use the brain power as well as financing to see to the development of paradigms and frameworks globally to ensure that these persons receive their human rights.
Another imperative is that they are included in their world, and are given access to contribute to their world.
Currently, of the fifty states in the United States of America (USA) - the number of states there number in the teens who offer families comprehensive health insurance support for dealing with health related issues, stemming from Autism.
Using a first world country like the US as a point of reference – if at this time (2010) only roughly 14 states have health insurance provisions for the Autistically affected family it seems that “the world authorities”- are not cottoning to the fact that we all need to be pro-cure and pro-inclusion /preparation for the Autistic global citizen.
The increase in numbers reported in journals like the American Journal of Paediatrics among others that the figures are increasing – it is a safe assumption at this time that Autism is an epidemic about to become a pandemic.
In Jamaica where I abode, no legislation that I know of and I seek out these developments almost, obsessively compulsively - is yet in the making to 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 here in Jamaica (we are on the Westminster political model),where the Ministries of Education, Health and Social Security, create a task force to develop a way forward for the nation to deal with this epidemic here in Jamaica.
We here have yet no fully state funded school or therapy centres. We need these due to the high levels of unemployment here and the high level of people who cannot pay for health care.
If a heavily state funded intervention is mounted many families affected could be helped.
The absence of any significant government interventions in this area to date – is seeing the financial ruin of families, social breakdowns as well, as marriages and partnerships crumble under the strain.
This sees the majority of the services, education facilities, and therapies being made available in the Private Sector - which makes the services and help expensive.
The clients of The Maia Chung Autism and Disabilities Foundation, repeatedly seek our help in subsidising care, medication, school fees and even groceries, because a lot of the clients we have cannot afford the services in a private care facility and so cannot leave their child to work and end up having other needs rent, utilities, food unmet.
Not just here in Jamaica, but The Maia Chung Autism and Disabilities Foundation is calling for fast tracking on the global scale in the area of development agenda setting, policy writing and drafting and legislation to speak to the following: where will the Autists work?
Where will they live?
Which companies will insure their needs?
Which governments will legislate the Autists inclusion into all areas of life, that each country’s constitution dictates as the basic human rights of their citizenry, no matter what their intellectual or physical challenge or other status?
Which nations will collaborate to see to the protection and access of this neuro-diverse populace that is here and increasing?
Research carried out by The Maia Chung Autism and Disabilities Foundation, reveals that Autism is a brain disorder that affects all races, genders, despite being biased to males and all ethnicities. Ergo it is reiterated this is a world issue.
Not knowing the cause how do we cure or prevent Autism?
This is what makes it so dangerous and in need of a heavy and urgent focus by the world.
This is June 2010 The Maia Chung Autism and Disabilities Foundation is not satisfied with the feedback we have received from Jamaican government officials here.
A one of subvention, two or three children having their autism school fees paid by the Education Ministry is not adequate to me or whom I represent - from neither the Education Ministry, Health Ministry nor the Social Security Ministry.
While the approach to Autism care and service provision has to be a multi-pronged community approach, law changes and the cohesion that will co-ordinate all the efforts geared to dealing with Autism in Jamaica, logically has to come from the head of the nation: our government.
The need for budget allocation to subsidise school attendance on a large scale, to ensure that Autistic children are educated will have to come from government in crucial collaboration with the private agencies already involved.
These are the interventions that make sense if the government is without budget, to create its own facilities. Use existing facilities and craft strategies that will aid the proliferation and success of these facilities to the least cost to the Jamaican government.
We need based on the rapid rise of the Autism disorder a government allocation to do a wide ranging survey as to the true extent of the disorder and its impact on the nation.
Well intentioned private sector care givers cannot give away their services as they are trying to do a good, but 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 happened to the Jamaican School of Destiny and is now facing Adonijah. The former a Kingston based Autism focused school and the latter also based in Kingston.
The Maia Chung Autism and Dsiabilities Foundation has researched these entities, which say that even when the parents cannot pay the fees for the love of the children, and the obvious need exhibited the students are often times taken in by the schools, which end up paying the ultimate price: closure - as they cannot sustain their activity.
There are clients of The Maia Chung Autism and Disabilities Foundation who have had to be pulled from school or deregistered /expelled as their parents can’t afford the Autism speciality school fees.
There are those who put the child in a school for Neuro Typicals, which in most cases we have, has had not worked in favour of the child.
To date we have been awaiting a subvention from the Social Security Ministry which issued one to the Foundation in 2009 translating to roughly US$1-400.
That kept two to three students in school. We need an annual input to help our clients with funding for school fees treatment.
Despite sending in our request late last year to fall in line with the new financial year we have had to date no response, in fact while writing this piece I called the State Minister with the responsibility for this issue “he was in a meeting”.
So if citizenry are showing that we are willing to help ourselves by being proactive forming Associations, Schools, Foundations, who should we look to help us?
In a vacuum these efforts will really have no efficacy. Especially in this global recession which has seen most of the donors to our non-profits and non-governmentals, which take charge of offering advocacy and services for the challenged, cutting their donations to Jamaican agencies - we are not facing a very upbeat future. More Anon.
Maia Chung is the News Manager of Newstalk 93 FM in Jamaica, West Indies and the founder of The Maia Chung Autism and Disabilities Foundation also in the same country the first Autism focuse Foundation for the island mcautismfoundation@gmail.com.
