High cost of diagnosis impacting children with autism

Many Jamaican parents are struggling to secure timely diagnoses for children on the autism spectrum, a situation that is impacting treatment and classroom support, according to President of the Jamaica Teachers' Association (JTA), Mark Malabver.

"There is a significant cost to special needs diagnosis," Malabver said. "Many parents really are not able to afford it, and where they are waiting in the system, there is a long waiting list. This impacts diagnosis and proper treatment in a timely manner."

Costs for autism assessment and support in Jamaica can vary widely, with evaluations running into tens of thousands of dollars and ongoing therapy in some cases exceeding $100,000 per month, placing critical services out of reach for many families. The wide variation in cost also reflects the absence of a structured, accessible system for early identification and support. Against this background, concerns have been growing about how the education system is managing students on the autism spectrum, particularly as inclusive education efforts expand without a corresponding increase in specialised resources.

Within classrooms, Malabver told THE STAR that these gaps are becoming increasingly visible, as some students are misunderstood or incorrectly assessed due to the absence of early diagnosis and tailored support.

"You may misdiagnose the child, you may think that the child is just not able to grasp the concepts... when maybe the approach that the teacher is taking is not tailored to meet the child where he or she is at," he said.

In many cases, teachers are left to manage large class sizes while attempting to support students with complex and often unidentified needs, a situation that he said is contributing to mounting frustration.

"That does lead to a lot of frustration in the system... many teachers are not trained to pick up on certain things within the classroom," he added. Limited access to diagnostic services continues to hinder early intervention, with Malabver pointing out that there are few centres across the island equipped to conduct specialised assessments.

"We want a more systematic approach where once a child reaches a certain age... teachers are sufficiently equipped with the skillsets to pick up on certain things and to divert the child for proper assessment before they are returned to the system," he said.

He added that support should not end at diagnosis but must follow the child throughout their educational journey to ensure continuity of care.

"Over the years, special needs has been treated like a sort of black sheep of the education system," he said

The JTA is now calling for expanded infrastructure, including properly staffed and resourced assessment centres, as well as additional classroom support such as aides to assist students in navigating the learning environment.

"A child might need a shadow... to help the child to navigate the education space," he said.

In addition to structural challenges, Malabver highlighted the role of stigma and misunderstanding among some parents, which can further delay intervention when concerns are first raised by educators.

"Unfortunately, we are in a society... if a teacher encourages a parent to have a child assessed, the first thing that jumps out is that nothing is wrong with the child," he said, adding that cultural beliefs and misconceptions can sometimes influence how families respond. "That does not help the situation at all."

He is therefore urging greater public education, particularly through the ministry of education and its agencies, to help parents better understand autism and the importance of early assessment and support.

"There is a need to educate parents... to understand that it is not the end of the world," he said.

"It is unacceptable for a child to be on a waiting list [for] two years and that's the minimum time for assessment," Malabver said, warning that such delays can have lasting consequences for a child's development and educational progress.

Despite the challenges, he maintained that an autism diagnosis should not be viewed as a limitation, but rather as a step towards understanding and supporting a child's potential.

"A child who is autistic... chances are they can be extremely intelligent," he said.