an agent or substance known to alter the course of normal fetal development.
Alcohol consumed by the mother is transferred freely to their baby via the placenta and umbilical cord, where it can interfere with how the rapidly-developing cells grow and migrate to form the whole body.
The pattern of abnormal development associated with alcohol consumption during pregnancy is recognised by the medical term Fetal Alcohol Spectrum Disorder (FASD).
Alcohol exposure in pregnancy
It is estimated that approximately 50% of pregnancies in New Zealand are alcohol exposed. The good news is that 75% of women stop drinking when their pregnancies are confirmed but that leaves a significant proportion who continue to drink.
The Growing Up in New Zealand Study (a longitudinal cohort study of 7000 families of children born in 2010), found that 71% of women reported using alcohol prior to pregnancy or becoming aware of their pregnancy. Applying the current birth rate, this equates to ~40,000 conceptions per annum exposed to alcohol.
The study also found that 23% of women reported drinking during the first trimester, reducing to 13% after the first trimester.
The odds of drinking alcohol before pregnancy were significantly higher for younger women, European or Māori women, and women with an unplanned pregnancy. Alcohol use during the first trimester was higher among women who were European or Māori, with no secondary school qualification, in their first pregnancy, and/or with an unplanned pregnancy. In the second and third trimesters, alcohol use was more likely for European or Māori women aged 30 years and over, and for women in their first pregnancy.
Studies examining the influences of alcohol use in pregnancy have identified factors such as: social relationships, and norms; stigma; trauma and other stressors; alcohol information and messaging; and access to trusted equitable care and essential resources. A Master’s thesis examining how Māori women manage decisions about alcohol use when pregnant identified a Trading off process that existed within a wider and complex social context. Trading off incorporated processes regarding: learning the rules about alcohol, getting messages about alcohol and pregnancy, changing alcohol use while making role transitions, and using alcohol in the processes of fitting in, releasing pressure, and carrying on as normal.
Harm from alcohol exposure during pregnancy
FASD is the leading preventable cause of intellectual disability in the western world. Not all babies exposed to alcohol before birth will have FASD: it is impossible to predict.
The knowledge that alcohol use harms unborn babies is not new. On 18 August 1874, a petition by Haimona Te Aoterangi and 167 others was presented to the House of Representatives that showcased the harm from waipiro –
“…for some law to be passed by the Assembly and the Government affecting this evil thing, grog, which is destroying us, so that a stop may be put to drinking among the Māoris, for that is at the root of the evils under which we suffer…it impoverishes us: our children are not born healthy because the parents drink to excess, and the child suffers…”
Drawing on decades of international and national FASD research, the Ministry of Health, Health Promotion Agency/Te Hiringa Hauora, Royal New Zealand College of General Practitioners, New Zealand College of Midwives and other health sector agencies currently recommend:
Stop drinking alcohol if you could be pregnant, are pregnant or are trying to get pregnant
This recommendation (also included in New Zealand’s low risk drinking advice) is based on there being no known safe level of alcohol use during pregnancy. While heavy or frequent use of alcohol increases the risk of lifelong harm, no amount of prenatal alcohol exposure can be considered safe.
Depending on a range of factors, exposure to alcohol can cause major congenital abnormalities, as well as cognitive, emotional and functional deficits. Due to the brain and central nervous system being the first and the last system to develop throughout gestation, these areas are particularly sensitive to the neurotoxic effects of alcohol. In 2016, over 400 disease conditions were identified as associated with FASD.
The extent to which permanent deficits in development occur depends on the interplay between a number of factors, including the timing and duration of exposure, the amount of alcohol used per occasion, maternal wellbeing, and genetics. This individual variance of effects of prenatal alcohol exposure makes the identification of children born affected by alcohol exposure more complex.
Studies looking at how alcohol affects genes and subsequent fetal development indicate that alcohol use prior to conception by either or both parent may increase the risk of harm to the fetus. Alcohol use in combination with other substance use, such as tobacco, can also increase the risk of adverse outcomes.
While not all prenatal alcohol exposures will necessarily result in clinically significant deficits in development, the Growing up in New Zealand Study found that consumption of ≤3 standard drinks per week during pregnancy, and importantly consumption of ≤3 standard drinks per week very early in pregnancy when the pregnancy might not be known, was associated with less regulated, focused and interactive infant behaviour.
What is Fetal Alcohol Spectrum Disorder?
FASD is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol.
FASD is a lifelong disability. Individuals with FASD will experience some challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD is unique and has areas of both strengths and difficulties which are important to recognise and support.
A small percentage of children with FASD will show physical signs of prenatal alcohol exposure that a trained doctor could identify, alongside the associated developmental problems the child may present with. This is more likely to be recognised where prenatal alcohol exposure is known to be part of the child’s prenatal history. More usually, children with FASD do not receive a diagnosis until their functional difficulties have become significantly out of step with normal development for their age, and problematic. To receive a diagnosis of FASD the individual has a serious disability (eg. three or more developmental domains where their functioning is below the 3rd percentile compared to the general population). There is no ‘mild form’ of FASD.
Generally speaking, FASD is an ‘invisible disability’ in our communities. While signs may have been there throughout the pre-school years, it is often not until middle-childhood that a medical assessment is sought. However, the likelihood of receiving a diagnosis of FASD early on in development is low. Often families will have received a string of other co-morbid diagnoses, often from multiple clinicians, such as Attention Deficit Hyperactivity Disorder, Dyslexia or Reactive Attachment Disorder before receiving a more comprehensive medical and psychological assessment relating to the effects of prenatal alcohol exposure. In many cases, prenatal alcohol exposure (as an underlying cause of presenting problems) is overlooked or dismissed due to lack of knowledge, experience and/or resources to investigate further. Each differential diagnosis made is costly and may not lead to effective, supportive strategies required for a child with multiple brain impairments. Unfortunately, by the time the child receives an FASD diagnosis, their difficulties may have escalated to include mental health problems, school suspension, and in some cases, trouble with the law – and caregiver burnout. These difficulties are not inevitable, but are due largely to the delay in recognition of the complexity of brain impairments and provision of effective strategies to reduce the symptoms.
To that end, FASD is a disorder that has two necessary avenues of prevention:
1. preventing prenatal alcohol exposure through effective population-based and targeted policies and programmes to reduce alcohol use; and
2. preventing the secondary harms to persons born with FASD, through timely and appropriate recognition and evidence-based responses.
FASD is a lifelong disability, but the associated harm affecting individuals with FASD and their whānau does not have to be.
How many New Zealanders have FASD?
To date, no studies have been carried out to determine the prevalence of FASD in the population. Therefore, estimates can only be ascertained via comparisons with similar countries where such prevalence studies have taken place, eg. Canada.
Extrapolating from these studies, the incidence of FASD in Aotearoa New Zealand is estimated to be 3% of live births. This represents a total of 1,800 babies born each year with FASD.
It is also estimated that:
- around half of the children and young people in Oranga Tamariki care are affected by FASD;
- approximately 10-20% of people in prisons and other correctional settings have an FASD;
- 80% of adults with an FASD will not be able to live independently without some level of sustained support;
- children and adolescents with an FASD have a 95% lifetime likelihood to experience mental health issues;
- individuals with FASD have a much higher risk of suicidal behaviour than the general population; and
- (using recent Canadian clinical data), 48% of children diagnosed with FASD have significant and permanent impairment in six or more brain domains (with three domains being the minimum requirement for a confirmed diagnosis). This proportion of impairment is likely comparable for children assessed for FASD in Aotearoa New Zealand.
The social and economic impact of FASD
Beyond the substantial and lifelong health and social impacts of FASD to individuals and whānau, the economic costs are considerable. The estimated annual cost of lost productivity alone from FASD-related morbidity and mortality in Aotearoa New Zealand in 2013, using a conservative 1% prevalence of FASD in the population, was estimated to be between $49 million and $200 million.
In 2018, it was estimated that the annual cost of new FASD cases in Aotearoa New Zealand was $171 million (excluding costs of existing cases and applying a 3% prevalence), or $95,978 per new case.
Aotearoa New Zealand FASD Action Plan
In 2016, the New Zealand Government supported the development of a cross-ministry FASD Action Plan (2016- 2019) that sets out a framework to reduce the harm from prenatal alcohol exposure. So whilst FASD remains a largely hidden disability, fields of interest and endeavour have continued to expand across sectors in Aotearoa New Zealand. This includes a claim to the Waitangi Tribunal’s Health Services and Outcomes Kaupapa Inquiry (WAI#2624) regarding the Crown’s failure to actively prevent FASD and its secondary harms among Māori.
Warning labels on alcohol products
From 31 July 2023, every alcohol product sold in Australia and Aotearoa New Zealand will be required to display a pregnancy health warning on the container as well as packaging. This label has been mandated by Ministers in both countries to reduce the prevalence and/or severity of FASD.
For individual alcohol containers of 200ml or less, only the warning pictogram is required. For products >200ml (as well as for packages of alcohol products), both the pictogram and warning text are required.
This label will add to the other evidence-based actions and activities that are in place to support healthy pregnancies. It is another important step to building strong and consistent messaging about alcohol-free pregnancies being the safest option.
How it all began
FASD International Awareness Day was initiated by RJ Formanek, a Canadian adult with FASD who speaks out about his challenges around the world in conferences, online and in podcasts.
He wanted to stand out and be noticed, and chose red shoes to express himself. When people noticed them and asked him about them, it became a great opportunity to talk about his FASD.
In 2013, RJ met Jodee Kulp, an international speaker, trainer and advocate for those with FASD, at a conference in Canada. Sure enough, she asked him about his shoes and thought it was a brilliant initiative – and the Red Shoes Rock FASD international awareness campaign was born.
Five years later, in 2018, a new logo was created, with ‘Start the Conversation’ on it, with a more structured aim of building awareness of FASD, reducing stigma and help people understand more about the diverse symptoms of brain and metabolic injury which can be caused by prenatal alcohol exposure.
Times are changing in Aotearoa
- On September 9 in 2021, Alcohol Healthwatch and the University of Auckland School of Population Health co-hosted FASD Awareness Day on 9 September 2021 with a wonderful Zoom hui attended by hundreds online. NZ Children’s Commissioner Judge Andrew Becroft and Disability Rights Commissioner Paula Tesoriero presented their case that lack of funding for FASD in Aotearoa New Zealand is a Human Rights issue. Chair of FASD-CAN, Leigh Henderson, and their new Navigator, Anna Gundesen, also spoke. It was introduced by Alcohol Healthwatch’s Executive Director Nicki Jackson.
- Excellent journalism from Paula Penfold brought the Disordered documentary to our screens as well as other deep investigations into FASD in Aotearoa – a must-watch to get an idea of how our justice system is failing those with FASD over and over again, bringing appalling miscarriages of justice to too many people with FASD.
- Over the last two years a pilot in the Young Adult Court in Porirua has been a great success – a different way to work with young people with neurodisabilities in court. Read more here about this ground-breaking and very encouraging work from our justice system.
- We’ve had several surveys from the University of Auckland’s School of Population Health which have found that professionals in the education and social work sectors need much more training and information about FASD. Results of a justice survey are in the pipeline.
- The Waitangi Tribunal had powerful cases presented on waipiro / alcohol harm to our Māori population, especially regarding FASD. A quote from a Māori petition imploring the government to regulate alcohol dating back to 1874 was raised: “…our children are not born healthy because the parents drink to excess and the child suffers…”
- A new Ministry for Disabled People has been launched, headed by Minister Poto Williams. However there is no confirmation yet as to whether there will be significant steps towards the Disability Support Services which those with FASD desperately need under the new Ministry.
- FASD-CAN launched a brand new website, created a Aotearoa-specific FASD Handbook, launched a grant scheme for their member whānau, and employed the first FASD Navigator, Anna Gundesen, who has now been in her role for one year to directly support whānau and beginning new NZ-specific training sessions for caregivers. It is hoped that more funding can be found to roll out more Navigators across the motu in the future. Follow FASD-CAN on Facebook, sign up for newsletters, or best of all, join as a member to stay updated.
- FASD-CAN has also advocated for a review of the FASD Action plan with definitive timelines, learning support for those with FASD, consideration of FASD as a disability, retention of the Children’s commissioner, compliance with the rights of those with FASD under the United Nations Convention on the rights of disabled people, and improvements in the management of people with FASD within youth justice and care and protection facilities.