An important new study by a research team from Aotearoa published recently in JAMA Pediatrics (an American medical online magazine) showed that young people with neurodevelopmental conditions (NDCs) in Aotearoa have a significantly higher risk of dying prematurely.
Although this information is confronting, it is consistent with international research focused specifically on FASD. Increased mortality risk can be due to both medical complications and external causes such as suicide, accidental injury, and substance use.
However, FASD is not included in this study, despite being more prevalent than other NDCs represented in it.
This is not the first case where an analysis of neurodisabilities and disabilities has not specifically referred to FASD. This is because FASD is almost completely missing from the national data which was used in the study.
Only 0.1% of the population in New Zealand's IDI (Integrated Data Infrastructure) relate to people with an FASD diagnosis, despite the estimates for the prevalence of FASD in Aotearoa being 3%–5%.
This is an issue which our Chair, De Leigh Henderson, raised at the FASD symposium in August 2025, attended by senior policy makers, saying: "The database that the government will rely on for investment decisions will not favour FASD [because it] is hidden – maybe less than 5% of people with FASD are diagnosed and it was even fewer a few years ago. It’s a 'Catch 22' – no investment in the future because no recognition in the past.”
This matters, because NZ's Social Investment Agency (SIA), which makes decisions about areas for social investment, uses the IDI to make those decisions.
FASD-CAN CEO Stephanie James-Sadler said, “This data gap is the direct result of widespread under-diagnosis and misdiagnosis, and it means the true extent of risk for this population remains invisible in policy and service planning.”
We are raising this issue publicly at every opportunity. It is closely related to our mahi in advocating for more access to diagnosis, and for people with FASD to be eligible for Disability Support Services funding.
FASD-CAN sent out a media release on November 5, 2025 which was taken up by Waatea News radio in an interview with our Chair, Dr Leigh Henderson.
Listen to our Chair, Dr Leigh Henderson, interviewed by Dale Husband on November 7, on Waatea News (12.28 mins).
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