Under-Representation Of Fetal Alcohol Spectrum Disorder In National Data Masks True Mortality Risk

FASD-CAN calls for urgent action to improve recognition and diagnosis of Fetal Alcohol Spectrum Disorder (FASD) in Aotearoa.

FASD-CAN (Fetal Alcohol Spectrum Disorder – Care Action Network) welcomes the publication of the first comprehensive study examining the mortality risk of young people with neurodevelopmental conditions (NDCs) in Aotearoa New Zealand.

The nationwide study, published in JAMA Pediatrics, is confronting, as it reveals that young people aged 0–24 with NDCs face a significantly higher risk of premature death compared to their peers without these conditions.

The research found increased mortality rates among those with autism, intellectual disability, learning and motor disorders, and attention-deficit hyperactivity disorder (ADHD) — particularly from medical causes, injury, and suicide.

FASD-CAN notes that these findings are consistent with extensive international research showing that individuals with Fetal Alcohol Spectrum Disorder (FASD) also experience reduced life expectancy due to both medical complications and external causes such as suicide, accidental injury, and substance use.

However, FASD was unable to be separately analysed, despite the fact that it is more prevalent than all other forms of NDC in the study, due to a lack of data on FASD in our national Integrated Data Infrastructure (IDI).

“This research highlights the urgent need to address the severe under-representation of FASD in Aotearoa’s national data,” says Stephanie James-Sadler, CEO of FASD-CAN.

“Only 0.1% of the population in the IDI was recorded as having an FASD diagnosis, while international and local data indicate a true prevalence of between 3% and 5%.

“This 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.”

Dr Leigh Henderson, Chair of FASD-CAN, adds:

“The increased frequency of suicide among young people with NDCs must be urgently addressed. This issue is especially close to our hearts, as individuals with FASD are known to have a greatly elevated risk of suicide.

“We need targeted, condition-informed interventions, better access to health and crisis services, and a national commitment to accurate identification and support for FASD.”

FASD-CAN is calling for:

• Recognition that FASD is under represented in the data set that health, social investment and other agencies rely on for an evidence base for policy decisions
• To address this historical inadequacy, diagnosis of FASD must be increased and misdiagnosis as other neurodevelopmental disorders decreased
• Improved clinical awareness and mandatory training on FASD for health, education, and social service professionals.
• Development of condition-specific health and crisis support pathways.

Until these steps are taken, FASD will remain largely invisible in the data — and the thousands of New Zealanders living with it will continue to face preventable risks and inequities.

About the Study

Mortality Risk of Youth With Neurodevelopmental Conditions An Aotearoa New Zealand Nationwide Birth Cohort Study

Nicholas Bowden, Philip J. Schluter, Umi Asaka, Joanne Dacombe, Joseph Hii, Jonathan Lee, Brigit Mirfin-Veitch, Colette Muir, Solmaz Nazari Orakani, Lydie Schmidt, Kasia Szymanska, Eden Cruice, Hien Vu, Rachael Lawrence Lodge

JAMA Pediatrics – Read the full study here: https://jamanetwork.com/journals/jamapediatrics/article-abstract/2840515

About Fetal Alcohol Spectrum Disorder (FASD)

FASD is caused by exposure to alcohol during pregnancy. It is manifest as impairments of multiple brain functions including processing, reasoning and emotional regulation. It can result in life-long difficulties with day-to-day living and an increased risk of addiction, involvement in crime, homelessness and social difficulties.

FASD is a life-long condition which is often hidden, poorly understood and negatively stigmatised. In Aotearoa New Zealand, FASD affects between 3 - 5% of the population, and approximately 56,000 people under 18 years old. It is estimated that there are between 1,800 and 3,000 babies born each year with FASD. Overseas data show that FASD is 2-3 times more common as autism.

One in 5 people with FASD also have an intellectual disability (ID) and prenatal alcohol exposure is thought to be the major contributor to ID. In this study those with an ID were shown in the study to have a significantly increased risk of premature death.

Information on FASD-CAN

FASD-CAN Inc (Fetal Alcohol Spectrum Disorder – Care Action Network) is the lead NGO in Aotearoa New Zealand addressing FASD, supporting affected individuals and their families and carers. We also provide resources, training and advice to clinicians, frontline professionals and Government agencies including Police, Justice, Oranga Tamariki, social workers and care institutions, teachers and schools, communities, public inquiries, and individuals with FASD.

© Scoop Media