Maya Nanan: Integrating Autistic Persons Into the Mainstream

Activist and Commonwealth Awardee Maya Nanan sets a model of management and care

by Stefanie Gouveia

Maya Nanan was just 18 years old, when in 2022, she received a grant from the Queen’s Commonwealth Trust, Youth Venture Programme in commemoration of Queen Elizabeth’s Platinum Jubilee, being the first and only recipient from Trinidad and Tobago. Maya has been recognised for frontier work in creating opportunities for Autistic persons and for advocating for awareness and inclusion.

With this grant, Maya has created “Rahul’s Clubhouse”, an autism-friendly space for persons on the autism spectrum to engage in and access various educational and social programmes which will aid in their development. The autism centre, Rahul’s Clubhouse, provides a safe space for persons on the spectrum, as well as support services from a team of professional volunteers, family and friends.

Maya explains Autism as “A spectrum of conditions. The main characteristics are delayed speech development, challenges in social interactions and repetitive behaviours. Individuals on the spectrum will display different levels of these characteristics, so that no two individuals are the same.” Early signs of autism include not making eye contact, spinning, flapping of arms, twirling, repetitive behaviour, winding up, fidgeting, non-verbal by the time the child is 3 or 4 years, walking on tiptoes, and sensory issues. There are three levels of ASD described: Level 1 – requires support; Level 2 – requires substantial support and Level 3 – requires very substantial support.

Maya explains that some autistic persons in Trinidad & Tobago may be non-verbal and low functioning, which means that there is limited communication, and they need more support. Research and practise show that where there is early intervention and care, most autistic persons can learn to cope with their challenges. However, there is a significant lack of resources in the country – there are not enough qualified therapists and there are no programmes in place to integrate autistic persons into the public education system.

Rahul’s Clubhouse

Rahul’s Clubhouse is named after Maya’s brother who is on the autism spectrum and who benefits from her unreserved commitment and compassion. It caused her much pain as a child to see her brother denied basic opportunities and pleasures which she and most people took for granted. The simple routine of going to school or going to public spaces to socialise were not available to him.

Maya recognised that most neurotypical persons would not even stop to question if the basic rights they enjoyed were truly universal, as captured in the UN Sustainable Development Goals. “We’re only 1 year apart”, she explains. “Growing up he was discriminated against and turned away from several schools, he didn’t have a lot of opportunities like I did as a neurotypical person, and I wanted to include him.” She was determined to give him access to the kind of activities she was enjoying, and to break the stigma of autism.

But breaking the stigma required heightening awareness through public education and engagement of those caring and supporting autistic persons. It also meant being able to provide critical services that would aid in the integrative process of bringing autistic persons into mainstream social life.

The centre supports a wide span of age groups, from 2 to 35 years old. Centred around activities that bring autistic persons together with friends and family, special attention is paid to lighting, loud music and sensory overload. But in addition to socialising, there are needs for physical and emotional care, as well as access to education. Integrating autistic persons into society so that they can live independently requires

a) educating autistic persons

b) creating support systems to help them become independent, and

c) by providing opportunities for socialization; these are all being addressed at the centre.

There are a few people on staff, including one person on the spectrum who is also studying music. The centre has also worked assiduously at compliance by implementing safeguarding measures and policies. When setting up Rahul’s Clubhouse, a representative from the Queen’s Commonwealth Trust, visited Maya and her team to assist with the creation of policies to meet international standards. Maya was 12 years old when she started Autism Siblings and Friends Network. At the time it comprised of her two close friends from school and her cousins. Today there are over 450 volunteers. But Maya knows that the volunteer model is not sustainable and is keen to involve corporate sponsors in the delivery of ongoing care and services at the centre.

Hope for the future

Rahul is Maya’s motivation. He was diagnosed at 9 years old. Today he is 19. Her family intervened with speech therapy, developmental therapy, and socialisation.

Therapy for autism locally is costly. A 45-minute session of therapy can cost about $300. In addition, such services are centralised in San Fernando and Port of Spain, thereby making accessibility a challenge for Autistic persons from rural areas. The shortage of therapists also means that the schedule of care required for meaningful rehabilitation is a real challenge.

Autism Siblings and Friends Network is now a fully registered non-profit organisation and is progressively implementing a programme of care and support. At core, are the training sessions aimed at educating carers, educators and youth volunteers about autism and training them to provide different interventions for persons with autism. Qualified speakers and medical professionals provide and share information regularly at talks at the centre. Professionals also provide information on legal matters and access to social services.

The grant from the Queen’s Commonwealth Trust helps in the provision of scheduled therapeutic services, as well as syllabus-based schooling. Maya also hopes to expand operating hours to six days per week from 9 am to 5 pm. She also hopes to grow the volunteer base to be able to adequately support many other persons who are currently on a waitlist. Alternative locations and transport are also important facets of accessibility.

What Maya needs now are solid corporate partnerships to provide much needed funding to get infrastructure in place and to attract qualified staff. She believes that over time, the Centre will be self-sufficient through a combination of scholarships and paying students as well as the support of committed philanthropists and sponsors.

Maya Nanan can be reached at email - siblingsandfriendsnetwork@gmail.com

1868-346-3228