Autism Tobago promotes hope, support

BAVINA SOOKDEO

In Tobago, there exists a source of hope and assistance for individuals and families affected by Autism Spectrum Disorder (ASD) – Autism Tobago.

A non-governmental organisation, it was founded in 2010 by Dawnette Thomas and foundation members like current trustees Leila Rampersad and Heather Foster.

“The dream was to form a group with a mission to create a space and provide services specifically to children/persons with autism, seeing that the special schools in Tobago at the time did not cater adequately for persons with autism,” said Tobago Autism chairman Ria Paria, in an interview with Newsday.

Autism Tobago is a membership-driven organisation, catering to people with autism ranging from ages three-20-plus and their families.

Although still gathering data on the number of people with autism in Tobago, the organisation estimates that the number of those with autism in Tobago has soared into the hundreds.

“We are certain that the numbers have reached the hundreds, with many of those being newly diagnosed children. However, it should be noted that many are undiagnosed as well,” said Paria.

The organisation operates out of Happy Haven School in Signal Hill.

“Unfortunately, this is not our own space where we can effectively run the business of Autism Tobago, but at this time it allows us to host our monthly whole group meetings,” Paria said. “Ultimately, it is our desire to see Autism Tobago have its own dedicated space where we can effectively serve the needs of the autistic community here in Tobago – in a more multifaceted and streamlined manner.”

Autism Tobago has also used various spaces like the Scarborough Library to hold workshops, training sessions, and family activities. These initiatives aim not only to provide valuable support but also to foster a sense of camaraderie and understanding within the community.

Paria pointed out that its main challenge is not having timely, affordable or sufficient access to therapies and support services that autistic people need.

“Autism Tobago offers direction and guidance to its members when they are seeking out professional services. The services that are currently available are provided through the General Hospital or privately, these include: Speech and language therapies (private and at the hospital), occupational therapy (private and at the hospital), equine therapy (private – Healing with Horses Foundation), behavioural therapy (private) and music therapy (private).”

Autism Tobago embraces individuals with autism and their families, extending its membership to all who seek support and connection. Moreover, the organisation welcomes volunteers willing to contribute their time and efforts, regardless of personal connections to autism.

“We have persons who are trained and qualified as part of our group so parents do receive trusted information from experienced professionals.”

Looking ahead, Autism Tobago envisions acquiring a permanent space equipped with essential facilities like conference space/facility, calming and sensory rooms, classrooms/multipurpose rooms, outdoor green spaces, etc. Additionally, the organisation seeks to foster better collaboration with and input from government entities.

Asked how Autism Tobago plans to address ongoing challenges or obstacles faced by autistic individuals and their families in Tobago, Paria said, “The challenges and obstacles faced by our school-aged autistic children is of paramount importance. They include inadequate opportunities for the proper schooling of higher-functioning autistic children who may have social challenges in the main-stream school setting.

"Additionally, policies and legislation need to be addressed for more inclusivity and integration of autistic students, as well as championing the need for special needs teachers/assistants to be included in faculties. For autistic persons over 18 years... they need training in the areas of: life skills, technical vocational skills, etcetera in order to make them employable or self-sustaining so that they can also be valuable contributors to society.”

In pursuit of its goals, Autism Tobago collaborates with therapy providers, seeks sponsorship from businesses and government, and engages volunteers to implement transformative projects like the Sensory Positive Safe Space initiative – which will see the creation of sensory spaces tailored to the needs of autistic children, teens and young adults. This collaborative approach harnesses collective efforts to address the diverse needs of the autistic community.

“It will be transient in nature as we do not have a fixed location for the organisation,” said Paria.

So what does Tobago truly need in order to help autistic people more?

According to Paria, “What is needed is an increased community of persons (whether relatives, employers, customer service providers, etc) who are aware of the needs, challenges and value of persons with autism, who are willing and able to be the voice and change-makers in society to champion efforts that develop and build on autistic individuals’ strengths.

"For example, families who understand the strengths of their child (music, art, etc) can support their interests and help them thrive and grow in their particular niche.

Paria said the organisation would like to convey to the community on the importance of supporting autistic individuals and promoting inclusivity.

“One of the main things we would like to emphasise is that having a child (who) is diagnosed with autism spectrum disorder is never something that is planned for or anticipated, and persons who care for those with autism understand that receiving a confirmed diagnosis changes your life drastically.

"So it is important for the community to know that this is something that can or may affect you, a family member or friend in the future either directly or indirectly. So, by creating an environment that is more inclusive, informed and aware of the challenges faced by persons with ASD and their families we improve their day-to-day experiences. As such, through its growing reach, presence and initiatives, Autism Tobago’s aim is to see that in the future, the challenges faced by our founders become little to non-existent for new and incoming members – as the community that we impact becomes more inclusive and accepting of our autistic loved ones.”

Autism Tobago will host an Autism Awareness Walk in Roxborough on April 25 from 10 am and an Awareness Fair on April 27 from 1 pm at the Buccoo Integrated Facility.