International Fasd Awareness Day: September 9, 2022

This is an international awareness campaign giving voice and support to those affected by Fetal Alcohol Spectrum Disorder (FASD). Every year on the 9th day of the 9th month, to symbolise the nine months of pregnancy, millions of people around the world hold events to promote public awareness of FASD and support those who are affected by it.

The Facts

Drinking any amount of alcohol at any stage of pregnancy can lead to FASD, a permanent brain injury which is estimated to affect 3-5% of the population in Aotearoa New Zealand, or up to 3,000 babies annually. Despite the fact that there is no known safe amount or time to drink alcohol when pregnant, the Growing Up In NZ study found 71% of women drank alcohol before they knew they were pregnant and 13% continued to drink after the first trimester. Many women across most demographics think that drinking moderate amounts at various stages of pregnancy is not problematic – this is not the case.

FASD is more common than autism, Down Syndrome and cerebral palsy put together and as such, it is by far the greatest contributor to neurodisability in Aotearoa. Those affected by FASD experience lifelong physical, behavioural and learning difficulties which affect their interactions within education, health and justice settings. Without support, their entire lives can be extremely challenging for themselves and their whānau, and can also have a huge impact on our society.

Lack of awareness and stigma

There is low public awareness around the behaviours which characterise FASD and many assume it’s simply bad behaviour which can be mitigated by using ‘consequences’. However, due to the nature of the brain injury, these simply don’t work. The damage affects individuals differently and different parts of the brain may be affected – those responsible for adaptive behaviour, executive functioning, sensory processing and impulsivity. Those with FASD are continuously punished by being born with a brain injury and by a useless and harmful behavioural model of intervention, particularly within the education and justice sectors.

Lack of awareness of how FASD affects the brain also leads to stigma for both the individual and the whānau and it can result in exclusion from education, from society and ultimately from any chance of a good life. This may lead to secondary disabilities such as mental health disorders, substance abuse, a trajectory towards the criminal justice system and increased risk of suicide.

As well as increasing awareness of the dangers of alcohol during pregnancy, the International Day of Awareness campaign seeks also to inform the public that challenging FASD behaviours are not wilful or the result of poor parenting. The suggestion is to think ‘brain, not blame’, and ‘can’t, not won’t’.

Ineligible for support services

Unless a child with FASD has a high level of intellectual disability (only 10-20% of children with FASD do) then children in Aotearoa are not eligible for help from NZ Disability Support Services. This means around 80% of individuals and their whānau affected by FASD do not qualify for support. A report from the Children’s Commissioner and Disability Rights Commissioner in 2020 highlighted this fact as a violation of human rights.

With early support, those with FASD can grow and achieve

However, with early diagnosis and intervention, those with FASD can lead full lives. As Professor Anita Gibbs wrote in July 16, 2022 in the Aotearoa Journal of Social Work, “it’s cheaper by far to assess [those with FASD] early so we can intervene early. What is $9,000 for an assessment compared to $250,000+ to place them in residences … we harm children by denying them the right to be assessed, and for disabled children especially, the right to live a good life.”

If you would like to feature FASD International Day of Awareness 2022 in a news story, please contact FASD-CAN Chair Leigh Henderson (details above). She can put you in touch with professionals and/or whānau for potential interviews.

There is more information on the FASD International Day of Awareness on our webpage.

FASD FACTS

What is Fetal Alcohol Spectrum Disorder (FASD)?

FASD is recognised as the leading cause of developmental disability in the developed world. It describes a broad spectrum of physical and developmental disabilities occurring over a person's lifetime as a direct result of prenatal exposure to alcohol.

How prevalent is FASD?

No research has confirmed the prevalence of FASD in New Zealand, but the Growing Up in New Zealand study quantified the number of women who consume alcohol in early pregnancy at 71%. Many pregnancies are unplanned, and therefore more likely to feature alcohol exposure. The Ministry of Health acknowledges there is evidence that the prevalence could be 3-5% of the population. Based on this information and international research it is estimated that up to 3,000 babies could be born with FASD annually.

Without physical symptoms it can often be misdiagnosed as ADHD or autism (which may co-occur with FASD) or not recognised at all. It is therefore described as a hidden or invisible disability. An accurate diagnosis requires a specialised, multidisciplinary, expensive assessment.

Outcomes

Those affected by FASD will usually require some degree of lifelong support and care. FASD behaviours can be very challenging. Unsupported FASD adults are less likely to get or hold down a job and more likely to be involved in crime, substance abuse and unwanted pregnancies which perpetuates a cycle of FASD damage within society. International research has shown that suicide rates in individuals with FASD are considerably higher than the general population. The Government has recognized that FASD is a life-shortening condition by specifying FASD as one of four conditions which are eligible for early withdrawal of Kiwisaver. Yet access to early intervention to prevent the secondary effects is not provided routinely. There are significant economic costs in our society of not educating adequately around alcohol in pregnancy and not supporting individuals with FASD from an early age.

Action Plan

The Government produced an ‘FASD Action Plan 2016-2019’, with a broad approach to the prevention, diagnosis and support of FASD. Sadly, many of these actions have not been completed and a longer term strategy is needed.

Where to go to for support

FASD-CAN (FASD Care Action Network) is the national charity providing support to families affected by FASD by uniting caregivers, strengthening families, supporting individuals and educating about FASD across our communities. It is a collective of parents, caregivers and professionals, most of whom have lived experience of caring for an individual with FASD.

Our key message for the FASD International Day of Awareness 2022

With shared strength, guidance and support, those with FASD can grow and achieve.

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