||My name is Maria Borde. I am an autism activist and mother of three boys on the autism spectrum living in Trinidad & Tobago. I was born and raised in Buenos Aires, Argentina, but Trinidad & Tobago has been my home for the past 15 years. My three boys (ages 16, 9, and 8) are at different points on the spectrum. They are all incredibly smart and provided they are given the opportunities and tools to help them succeed in life, they have a lot to offer to this world.
I started an autism blog in 2014 called Mountain Of Sand where I share what is like to raise three children on the spectrum in a country that offers very few resources.
I am a firm believer that a resource is only a resource if people can access it. Unfortunately, in Trinidad there aren’t any public resources for children or adults with autism. There is no public therapy available. There aren’t any public schools that can cater to their specific needs. There are only three doctors qualified to diagnose autism for the entire nation of 1.3 million inhabitants. There are no public respite programs. These services are all offered exclusively in the private sector at exorbitant prices that the average Trinidadian is not able to afford.
Just one type of therapy can cost between US$50-US$65 per half-hour session. If a child with autism needs to access between 25 to 40 hours per week of therapy, his/her parents have to pay somewhere between US$1,125 to US$1,800 per week for this.
Schooling costs between US$600 to US$1,200 per month and in many cases, the teachers are not qualified to teach children with autism. Private schooling can cost a whole’s month salary for many parents here. For many others, their salaries do not even reach that figure. Some parents are forced to take bank loans or borrow money to pay for a little therapy or schooling for their autistic children. A lot of our parents are forced to take their children with them at work or leave them at home where they spend day after day looking at four walls. This is the reality of autism in Trinidad & Tobago.
In July 2015, my husband and I founded the Autism Parents Association of Trinidad & Tobago (APATT). It is a non-profit organization incorporated under the Companies Act, 1995 as an advocacy and activist support group for parents and individuals on the autism spectrum in Trinidad & Tobago.
Our main vision is to help improve the lives of all affected by autism by campaigning and advocating for appropriate public educational centers, led by registered, qualified professionals, for individuals with autism, for proper health services, including public and free therapy, for children and adults on the spectrum, and for respite programs for parents and caregivers. The organization was established to address the need for proper representation of families affected by autism locally.
APATT's main objective is to get direct help for parents of children on the autism spectrum as well as those who are themselves on the autism spectrum. Our membership is entirely free and will always remain this way. We do not ask the parents for any sort of monetary contribution and we do not seek funding.
After witnessing the significant struggles of entire families affected by autism in Trinidad & Tobago, we realized that to make an impact on the entire nation, and not just a few individuals, we need government involvement and intervention. We believe it is the government’s responsibility to make sure that each citizen is taken care of. We also believe that the government has the kind of resources needed to make a significant change and help all families affected by autism in our nation.
As a parent of three children on the spectrum, there is nothing that would make me happier than seeing each child with autism in Trinidad & Tobago accessing public schools and therapy which cater to their specific needs. Parents who are not financially well-off would no longer be left in a dark corner to fend for themselves, and every family regardless of their financial situation would have access to the resources they so desperately need.
I know this is feasible, and I know it can and will happen. As an autism activist who represents hundreds of autism families, I will not stop advocating until these resources are available for each and every autism family in Trinidad & Tobago.
President of APATT
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.