Autism crisis demands data and state investment

THE EDITOR, Madam:

There is an autism crisis that the State has neither measured nor funded, and the consequences are falling squarely on families who can least afford to bear them.

Professor Maureen Samms-Vaughan of the University of the West Indies put the annual number of children born with the condition at roughly 678 to 700, or one in every 68 births. Extrapolated across decades of accumulated diagnoses, an estimated 45,000 children and young people in Jamaica are living with autism. That figure exceeds the population of several entire Caribbean territories. It is a demographic reality that our national institutions have chosen, whether by neglect or by default, not to confront.

Yet, Jamaica has no registry, no lifespan-tracking mechanism, and no reliable national dataset on autism prevalence, outcomes, or unmet needs. Policy that is not built on data is policy that reacts rather than plans. Without a system that follows a child from initial concern through diagnosis, intervention, schooling, and into adulthood, the ministries of health and education are, in effect, governing blindly.

We do not know how many children remain undiagnosed. We do not know how many age out of the school system with no plan for what comes next. We do not know, in any rigorous sense, what the true cost of inaction is, because no one is counting.

The second failure compounds the first. Diagnosis, speech and occupational therapy, behavioural intervention, and specialised schooling remain almost entirely privatised. UNICEF has identified only three schools in the entire country equipped for special education. Families who cannot pay are left with two options: forgo intervention altogether, or exhaust their savings pursuing it. Advocacy groups, for years, called for free health, occupational, speech, and psychological care, subsidised education, and tax relief for affected families. These are not extravagant asks.

They are the baseline of what a state owes its most vulnerable citizens. Instead, the burden of a national health and education failure has been quietly transferred onto individual households, many of whom are being driven toward financial ruin.

The absence of data and the absence of state-funded care are the same problem viewed from different angles.

What is required is neither complicated nor novel. First, a national autism registry, housed jointly by the ministries of health and education, with mandatory reporting from public and private diagnostic providers, so that policy can finally be built on evidence rather than estimation. Second, a costed, phased commitment to publicly funded screening, diagnosis, and therapy, beginning with early childhood intervention, where the evidence for long-term impact is strongest.

SANTANA MORRIS