“We must move beyond awareness” – parents call for stronger autism support systems

Parents of children with autism in Guyana are urging the Government and other stakeholders to expand diagnostic, educational and social support services across Guyana, pointing out that current systems remain inadequate as the number of diagnosed cases continues to rise.

The call was made during a recent edition of Disability and You, where autism advocates and parents Anjalena Beshpatty, founder of Samir Uniquely Me, and Neema Roopnarine discussed autism through a human rights lens and the lived realities of raising children on the spectrum.

Roopnarine said the national conversation must move beyond awareness and into full acceptance and societal inclusion of persons with autism. “For me, the theme this year is very appropriate, it’s moving from autism, from awareness which is basically saying I see you to I respect you which moves on to acceptance and then to belong in which is you belong here,” she said. She stressed that children and adults with autism have the same right to participate in society and live meaningful lives, regardless of their neurodevelopmental differences.

Beshpatty highlighted major gaps in early screening and diagnostic services, noting that many families are forced to travel long distances to access basic support. “We need more screening environment to be there, to get your screening, more diagnosis to be done, and to have more centres that provide services for the children across the country and all regions,” she said. She explained that the current system places additional pressure on families in outlying regions, who often have limited or no access to specialised services.

“We have had children come from all regions of the country to us in Georgetown, on the West Coast. And that’s a long travel. Of course, the complaints are there that there is no service available,” she noted. Both parents indicated that delays in diagnosis often affect early intervention, which is critical in autism development and long-term outcomes. The discussion also raised concerns about the ability of the education system to adequately support children with autism, particularly in mainstream or general special needs classrooms.

Beshpatty said autistic children require targeted intervention and structured learning approaches tailored specifically to their developmental needs. “Autistic children need a more specialised programme. They cannot be included with all disabilities… because their learning needs are different,” she said. She added that behavioural challenges must be addressed as part of the learning process, as they directly affect educational progress. “You have to first deal with the behaviour. Because even though autism is not behavioural, it exhibits itself through behaviour,” she explained. She further emphasised the need for trained professionals, behavioural therapists and structured learning plans in schools to ensure children can function effectively in academic environments.

A significant portion of the discussion focused on the lack of structured pathways for persons with autism transitioning into adulthood, with parents expressing concern about long-term independence. She said there is a need for structured vocational programmes and supportive employment systems that recognise the strengths of persons with autism. “We need a lot of support programmes for the children… where they can also experience that life has meaning,” she said.

Both advocates pointed out that many persons with autism function well in structured, repetitive environments and can contribute meaningfully in sectors such as libraries, hospitality, arts, and technical fields if properly supported.

Beshpatty noted that inclusion must extend into the workforce.

The parents also highlighted the significant financial and emotional strain placed on families, particularly where one parent is forced to leave employment to provide care. She added that workplaces must become more flexible to accommodate parents of children with disabilities. She also emphasised the need for more structured care facilities to help parents and ensure that children receive proper support while main caregivers are at work.

Autism, or Autism Spectrum Disorder (ASD), is a neurodevelopmental condition that affects how a person communicates, interacts socially and experiences the world around them. It is called a “spectrum” because it presents differently in each individual, with varying levels of support needs and abilities. People with autism may experience challenges with verbal and non-verbal communication, social interaction, sensory processing, and may engage in repetitive behaviours or have highly focused interests.

At the same time, many individuals on the spectrum also demonstrate strong abilities in areas such as memory, pattern recognition, creativity, mathematics, music and structured tasks.