The founders of the Autism Parents Association of Trinidad & Tobago (APATT) have been raising three sons on the Autism Spectrum for the past 19 years. When they first tried to get help for their three children on the Spectrum they began to see there was simply nothing available by way of free therapy or education. At each step there was a block or a restriction and they were often redirected to private resources which they could not afford. This has all been documented fully in the newly published memoir called, “Autism Kingdom: From Orphan To Raising Three Kings” authored by Maria Borde, the founder of APATT.
Originally, a blog was started in the early part of 2008 where one of the founders documented how difficult it was to raise children on the Autism Spectrum in T&T. This blog grew further into what people know as Mountain of Sand. Yet, we felt this was not enough, people would not take a blog seriously but they would listen to a registered NGO with unified Autism Parents demanding change.
In the early stages of 2015, when we started APATT, we spoke very openly and candidly about our observations on Autism becoming a business. Back then, the true awareness we were bringing to the public forefront was considered by some individuals, who aren’t Autism Parents, as being too controversial or antagonist in nature. In 2019, things have changed, we are glad to read that more people are becoming aware of this issue and they are raising their voices as well.
We recently came across a candid article written in 2018 by Dr. Radica Mahase from Support Autism TT and it is still very relevant in 2019.
“As long as therapies and services can only be accessible privately then parents/ caregivers have no choice but to pay what is asked. Parents are held hostages to therapists who decide costs of evaluation and therapy sessions as there are no agencies regulating or standardising the cost of these services. Presently, any individual can open a private practice and charge whatever fees they choose.
While it is up to parents to decide if to take their child, most parents are just so desperate to help their children that they will do whatever it takes to make sure that their children can get the therapies they need. Unfortunately, we live in a society where autism has become a business and within the last few years there has been a proliferation of autism-centred services.
From the furniture stores advertising sensory-friendly furniture to the clothing stores advertising sale on blue clothing in April (never mind that the autism ribbon is multi-coloured and not blue!), schools that do not have teachers qualified or trained to teach special needs children are suddenly marketed as special needs schools. Horse therapy, kitten therapy, play therapy, movement therapy are suddenly available and widely advertised...” Source
When APATT voiced similar concerns we were harshly criticized by some but did not shift our position because we knew things like ‘Light It Up Blue’ and asking for donations under the guise of ‘helping all children with Autism in the nation’ did nothing for Autism Parents and their children who were desperately in need of help.
It is with this in mind and as part of Autism Awareness Month, that we thought we would dedicate this article to highlight those who speak up on behalf of our special needs children and adults.
Autism Spirit: Led by two mothers of children on the Autism Spectrum, they have a petition going to help implement changes for special needs children in our country. They have been doing a great job by being very vocal about issues concerning individuals with Autism and their families. We hope Autism Parents can speak out in a similar manner and not give in to ‘silent advocacy’.
Support Autism TT: They have a weekly newspaper column that highlights the pressing needs of Autism families in T&T with a strong take on the issues that are in the public domain.
Autistic Society (ASTT): We see some positive changes here with neurodiversity being the main focus. They have been giving interviews where they highlighted the educational needs of children on the Autism Spectrum and advocate for society’s acceptance.
Autism Tobago: It seems like Tobago is often forgotten and it is good that there is a group that offers some support to Autism Parents.
Thanks to each one of these bodies for being a voice to countless Autism families in T&T. We would like to specially highlight our Autism Parents who work tirelessly each day to provide the best they can for their children with what little they have. You are the real heroes that no one knows about. ❤️