Redefining success in people with autism

BAVINA SOOKDEO

AUTISM, or autism spectrum disorder, encompasses a wide range of neurological conditions marked by differences in social interaction, communication – both verbal and non-verbal – and repetitive behaviours. According to the US Centers for Disease Control and Prevention, autism currently affects about one in 36 children and one in 45 adults in the US.

World Autism Awareness Day was observed on April 2, and April is recognised globally as World Autism Acceptance Month. This year’s 2025 theme, Advancing Neurodiversity and the UN Sustainable Development Goals (SDGs), emphasises the vital connection between neurodiversity and global sustainability. It underscores how inclusive policies and practices can not only support autistic individuals but also help drive progress toward achieving the SDGs on a broader scale.

Locally, numerous organisations and dedicated individuals have been making meaningful strides to improve the lives of those affected by autism. Among them is Susan De Freitas, founder of The Strategic Learning and Special Education Institute in Trincity. Since opening its doors in 2005, the school has evolved from a small programme for children with developmental challenges into a comprehensive educational institution. Today, it serves nearly 100 students – an estimated 99 per cent of whom are on the autism spectrum. The institute places strong emphasis on understanding, inclusion, and meaningful transformation. De Freitas, the programme director and a specialist trained in the Developmental, Individual-differences and Relationship-based (DIR®) model, has spent nearly two decades cultivating the space where children with autism are seen, supported and empowered.

“The model that is used at the institution focuses on a child gaining mastery of crucial developmental milestones that is critical to a child’s development and future education,” De Freitas told Newsday.

“Academic achievement can only be attained when certain developmental capacities are mastered, and this can only be done through individual work with each student and their families.”

At the heart of the school’s philosophy is DIR Floortime, a play-based, child-centred approach that promotes communication, emotional functioning, and sensory processing through deep relationships and emotional engagement.

“This model emphasises the importance of relationships and emotional connections in promoting healthy development,” she said.

De Freitas has ensured that the school offers a broad range of programmes tailored to students’ developmental levels. These include early intervention, elementary-level education focused on exams like the SEA and school-leaving certificate, as well as life skills and independent living training.

“Our students graduate out of our programme,” De Freitas stated with pride.

These tailored paths ensure that learning is never confined to rigid standards but shaped by the student’s needs and capabilities.

“Because we cater for children with developmental challenges, it’s not really according to the age, it’s more of the development and the graduation of the programme,” she explained.

Her decision to enter the field of special education was inspired from within her inner circle.

“My youngest sibling, Neil, was born with Down syndrome, and that inspired me to want to work with special needs,” she shared. Over the years, she and her team built a deeply experienced and evidence-based programme.

Still, providing a high-quality education to children with autism is not without its challenges. “The biggest challenges in educating and supporting the students are the multidisciplinary approach that is needed for students to progress,” De Freitas said. She outlined the necessity for access to speech therapy, occupational therapy, music therapy and sessions with psychologists – services that are not only vital but expensive.

“The physical environment is very important as it supports regulation and provides sensory input,” she stressed, noting the need for facilities like sensory rooms, proper playgrounds and learning aids.

Although the Ministry of Education provides grants, accessing them is another hurdle.

“Students must have documents to support their diagnosis, and this is also costly,” she explained.

Another significant barrier is the conceptualisation of autism.

“We don’t have a proper way of individually conceptualising the nature of the disability,” which is why she advocates for broader adoption of the DIR model, especially in early education.

“If/when these children go to preschool, there is an expectation that they function like a typical child…without intervention, what is going to happen? Everything is just going to cement,” she warned. “So the emphasis is on early intervention. There has to be intervention,” she insisted.

De Freitas calls on parents to be proactive and informed. “Everybody has their phone now, they have access to the internet…there’s a wealth of information out there.” She encouraged parents not to wait for formal diagnoses but to begin learning and supporting their children immediately.

Her vision for inclusion extends beyond the school and into the fabric of society.

“We need more involvement of people volunteering their time too – a simple thing like fixing play parks, making it safe, secure and communities coming together to support persons with autism.

“Autism is too prevalent now for us to treat it as though we’re looking for inclusion. These individuals are part of society now…yes, they’re different, but they are part of society. They may be your nephew, niece or relative. However, there has been a lot of the various groups, organisations and NGOs that really are really making a lot of progress in terms of inclusion and awareness. Hardly anybody is not aware of autism.” She commended people who already volunteer.

De Freitas also highlighted the gaps in workplace integration. “We don’t have rights for persons with disabilities and policies in the workplace. We don’t and that’s a major hindrance. I know that it has been advocated for and it comes before Cabinet all the time.”

She also noted that when students transition into mainstream programmes, they are sometimes subjected to bullying – leaving many parents hesitant and fearful about enrolling their children. As a result, many families are turning toward entrepreneurship.

“We do hydroponics and aquaponics…One of our students successfully has a candle-making programme, another is doing bottled nuts and another is making home-made coconut ice cream,” she said proudly. “They could really contribute to the food industry, growing food and plants…entrepreneurship. That is the way that we feel – rather than go and get a job for a lot of them, they could stay at home and do these businesses. The success of that would be in the community – whatever they produce could just supply the community,” she explained.

She said training opportunities for individuals seeking to work with or support people with autism can be accessed at the University of TT, the University of the Southern Caribbean and the UWI. “We do have some courses and things available here but there are also more online, and they are very accessible now. Before, I had to go to Washington to do my courses, but now you could just sign up for a course online,” De Freitas encouraged.

Over the years, the school has also gained international recognition. “One of our proudest achievements is the recognition we’ve received through international academic partnerships. For many years, universities in the United States have included Trinidad and Tobago in their Study Abroad programmes via the University of the West Indies.

"Seven years ago, their social work students began completing their practical training right here at our school. As a result, a book named The Half Yet to Be Told was published in the US that featured an entire chapter dedicated to our institute – aptly titled Hidden Gem,” De Freitas recounted.

“While we’re grateful for the support we receive from the ministry, there is still so much more that needs to be done locally to support children with autism and special needs.”

As for her hopes for the future, they are simple but profound. “That we would have more schools, institutions, programmes – for the children to develop, they have to be involved in programmes for that number of years,” she said, revealing that 200 children are currently on the school’s waiting list.

“Clearly there are not enough schools and more so, affordable schools.”

As the world marks Autism Awareness Month, De Freitas wants the public to understand one thing above all: “We need to have a more optimistic view, not a pessimistic view. These children could develop in a very, very positive way and they could be wonderful contributors. It’s not a death sentence.

“How do we measure success? If a child comes up to a developmental level where they’re independent, where they could be safe, where they could contribute, that is success.”