Editorial | Dealing effectively with autism

There isn’t a handle on the true scale of autism in Jamaica. It is estimated that one in 100 children (one per cent) is diagnosed with the disorder.

The absence of hard data is allowing the scale of the issue to be underestimated, but leads to delayed intervention, and policy to be reactive rather than planned. Nor is there a system to track people who suffer from autism, or other developmental disorders, across their lives, to provide policymakers with the kinds of information required to inform long-term policies to deal with these issues.

Or as Ruthlyn James, founding director of Adonijah Group of Schools Therapy and Assessment Centre wrote, in this newspaper on Friday, April 17: “Our national framework does not adequately track the lifespan of the autistic individual. We are not following the adolescent labelled disabled into their post-school reality. We are not accounting for the young adults who exit formal education without functional independence, without employment opportunities and without structured social integration.”

UNICEF estimates only three schools [in Jamaica] were identified as special education schools (the Promise Learning Centre, the Early Stimulation Plus School and the Montego Bay Autism Centre).

The emerging picture is of a need for stronger institutional and financial support for children with developmental disabilities and a more inclusive education system. Put differently, there is the mismatch between policy intent and delivery. The tendency to treat special-needs education as an add-on rather than a core public service.

LACK OF SPECIALISED INTERVENTION

The situation has been further exacerbated by the lack of specialised intervention. Jamaica does not yet operate a fully integrated system linking health screening, early diagnosis, specialised education, and long-term support. Instead, services remain fragmented – dependent on geography, income, the persistence of parents and, crucially, their ability to pay.

According the nonprofit, Smile a While Foundation, for instance, on average, an initial diagnosis appointment for a child on the autism spectrum is about J$12,000.The applied behaviour (ABA) therapy twice a week costs J$5,000 per session. Then there is speech therapy twice weekly at J$13,500 a time. Hiring a shadow (an aide to attend school) costs J$70,000 per month, to provide one-on-one support that facilitates inclusion in mainstream classrooms. So the potential monthly expense of full care for a child on the autism spectrum, who needs this level of intervention, can be upwards of J$220,00 per month or over J$2.6 million annually, not the kind of expense that can be easily borne by even middle-class families, much less poor ones.

In the circumstances, the government’s policy intervention must make early screening for development disorders routine, and mechanisms developed to streamline the cost of care, including greater utilisation of the public healthcare and school systems.

In the United States, where autism prevalence is now estimated at about one in 31 children, paediatric screening is embedded in primary healthcare. Children are assessed at multiple stages, allowing intervention before school age. Jamaica’s health system can replicate this at relatively low cost by standardising developmental screening in clinics.

INCLUSIVE CLASSROOMS

Second, education systems must adapt to accommodate children with disabilities, which has been recommended by specialists. Finland and Canada have moved towards inclusive classrooms supported by specialist aides, speech therapists, and behavioural experts.

Further, there should be focus on sustained public awareness programmes, not restricted to symbolic gestures. Autism is still widely misunderstood, often reduced to stereotypes or treated as a behavioural problem rather than a neurodevelopmental condition. This fuels stigma and delays diagnosis. There is a need for investment in sustained, community-level education, through schools, media, and healthcare providers, so parents recognise early signs and seek help without prejudice.

Collaboration with entities across the region should be considered. Standardising data collection across member states, allowing governments to make informed decisions. CARICOM member states could develop regional clinical guidelines, bulk-procure training programmes, and create a shared certification system for practitioners, ensuring minimum standards across borders.

Utilising technology, like telehealth platforms can help to bridge gaps, enhance capacity, share expertise and knowledge among the stakeholders.

Public education programmes, using local, culturally relevant information, and engaging community networks, is also important to defeat the stigma associated with developmental disorders.

The Caribbean has already demonstrated, in areas, such as disaster response and regional examinations, that cooperation can compensate for limited national capacity. Autism should be approached with the same logic.