Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for a neuro-developmental disorder which results from prenatal alcohol exposure (PAE). Individuals with FASD can experience complex physical, behavioural, learning and intellectual problems that persist throughout the lifespan. FASD is diverse and individual depending on when and how much alcohol was consumed during brain development.
Research has consistently found the brain to be the organ most sensitive to the effects of PAE, as the brain is developing throughout the entire pregnancy. Each level of development of the brain (and body) builds on the previous, so if the first part of brain development is affected by alcohol, it affects the rest. The wide range of impacts includes both physical and cognitive (behavioural and learning) effects.
However, physiological issues associated with PAE can include
The IQ range for all on the spectrum is from 20 – 130. Approximately 20% of those diagnosed in New Zealand have an intellectual disability, defined as an IQ below 70. This qualifies them for Disability Support Services – if an IQ of under 70 cannot be proven, individuals are currently not eligible for DSS.
IQ is not the only measure of brain function however – people affected by FASD can have an ‘average’ or even quite high IQ, but are seriously challenged by deficits in their adaptive and executive functioning. For this reason FASD-CAN and others advocate for a change in the eligibility criteria for DSS.
Did you know that approximately 50% of pregnancies are unplanned in Aotearoa NZ and around the world?
At FASD-CAN we know that no woman intentionally harms her unborn baby and we are committed to being non-judgemental and supportive in the presence of FASD.
We know that women from any walk of life who has had an unplanned pregnancy can find themselves in this situation if they didn't know they were pregnant and continued to drink socially – it can happen to anyone.
There is only one thing that prevents FASD – zero exposure to alcohol while pregnant. But New Zealand’s drinking culture and unplanned pregnancy rate are crucial barriers to FASD being prevented. Rates of FASD will reduce when our society stops normalising heavy use of alcohol, and when women are fully informed and supported to make abstaining from alcohol the easy choice during pregnancy.
The Growing Up in NZ study 2010, found that 71% of women reported using alcohol prior to pregnancy, or becoming aware of their pregnancy. 23% of women reported using alcohol in the first trimester, reducing to 13% after the first trimester.
Most women stopped drinking when they found out they were pregnant, but we know that there are many complex reasons why women find it hard to stop drinking, and many misconceptions around why alcohol exposure continues to happen.
The essential knowledge is that NO amount of alcohol is safe in pregnancy at any stage. Everyone in a pregnant woman's whānau and community should support her in this knowledge.
Men should also stop drinking when trying for a baby as more research is showing that alcohol can affect sperm and the genetics passed on to the pēpi / baby. Click here to find out more about the effect of male drinking leading up to pregnancy.
If drinking in the early stages of an unplanned pregnancy has occurred, then stopping immediately will reduce the possibility of your baby being born with FASD. FASD-CAN strongly advises seeking professional help asap via your GP or Lead Maternity Carer if stopping drinking is difficult for you – they may refer to you the Alcohol and Drug Services at your local DHB. Head to the Alcohol.org.nz website to begin with (further resources below).
FASD-CAN is primarily concerned with supporting individuals with FASD and their whānau and caregivers, but there is much more information about alcohol use in pregnancy from some of the NZ-specific and global resources below.
• To find professional help in your area around stopping drinking - try Healthpoint or Alcohol.org.nz
• Our partner organisation Alcohol Healthwatch has an information sheet about prenatal alcohol exposure. Click here to download.
• The Amohia te Wiaora (We're Stronger Without Alcohol) website also has a helpful pamphlet to download and print here.
• This factsheet has specific information on stages of fetal development – what organs are developing when and more. From the US/Canadian Mother To Baby network.
• FASDHub in Australia – FAQs about alcohol and pregnancy.
• FASDHub has further resources about alcohol in pregnancy here.
• The recent Every Moment Matters campaign in Australia is one of the best.
• FASD United in Washington has clear messages for expectant parents from many US health agencies - click here.
We highly recommend watching the two 'FASD101' webinars below – they'll give you a solid understanding of FASD on which to expand your knowledge.
Basic knowledge of FASD is something we're asked for all the time – by caregivers and whānau, professionals and educators. And even for the most knowledgeable of us, it's sometimes good to get a refresher.
This webinar is particularly designed for people who have limited knowledge about FASD but it is also useful for people wanting to review the basics. It will be of interest to caregivers/whānau who may be caring for an individual with FASD, as well as frontline professionals such as teachers, social or justice workers who interact with tamariki or rangatahi who may have FASD.
It's presented by Rose Hawkins, who has created FASD resources and has presented about FASD at many workshops, forums and conferences within Aotearoa and internationally.
Click here to go to the webinar on our resources page.
FASD is a brain-based condition with behavioural symptoms. You'll gain a new understanding of why traditional behavioural techniques are usually ineffective for individuals with brain-based differences – it can open up a whole new world of more positive interaction with your tamariki or rangatahi.
This webinar will educate you on a best-practice approach for increasing understanding of FASD (and other neurobehavioural conditions), reducing frustration, and expanding options. It is intended for professionals, parents, whānau members, and caregivers working with and living with individuals who have confirmed or possible brain-based differences, including FASD.
It's presented by our own FASD Navigator in Tāmaki Makaurau, Anna Gundesen, who also facilitates much of our caregiver training.
Click here to go to the webinar on our resources page.
Stigma can be defined as “damaging attitudes, stereotypes, and discriminatory behaviours” – it’s a common but complex issue with Fetal Alcohol Spectrum Disorder. It can be directed towards the individual or towards biological mothers; it can come from family members, health professionals, the general public, educators and peers.
Stigma is enormously damaging for people with FASD and their whānau – but alcohol use in our society is a problem we all need to own. Alcohol is normalised at every social event, and there are many reasons why anyone can develop an unhealthy relationship with it. Many people think that the biological mothers of people with FASD were alcoholic – when in fact any amount of alcohol at any time during a pregnancy can cause FASD and studies have shown that women with tertiary education are the most likely to drink alcohol throughout pregnancies.
In addition, around 50% of pregnancies in Aotearoa NZ are unplanned – this means that thousands of women from every part of society may not realise they are pregnant for weeks or months and continue to drink socially. Even light social drinking is enough to cause FASD.
Stigma around FASD is deeply problematic because:
People with FASD represent more just a label – they have families and friends, dreams and worries like everyone, and with support they can contribute meaningfully to society. Knowing more about FASD can reduce stigma, as can acknowledging that all members of our society have a role to play in preventing FASD. See tabs below for more information.
Stigma around FASD can cause serious problems because:
People with FASD represent more just a label – they have families and friends, dreams and worries like everyone, and with support they can contribute meaningfully to society. Knowing more about FASD can reduce stigma, as can acknowledging that all members of our society have a role to play in preventing FASD.
Words are powerful! The language we use around FASD can have a larger effect than we may at first realise on how it is perceived.
Australia’s FASD Hub has developed the ‘Language Guide’ – an easy-to-read set of guidelines which explains why some words and ways of phrasing concepts are preferable to others. It suggests more positive language for use in conversations, presentations and reports about FASD to reduce stigma.
If you are concerned that your child has some developmental delays, or there is confirmed prenatal alcohol exposure, the first thing to do is discuss your concerns with your doctor.
Diagnosis of Fetal Alcohol Spectrum Disorder in New Zealand is notoriously difficult. It requires a multi-disciplinary team, including a paediatrician, neuropsychologist, and ideally a speech therapist and occupational therapist to work together over a period of time examining various brain domains which can be affected by prenatal alcohol exposure (there must be substantial impairment in at least three to get a diagnosis).
There are very long waitlists for the few free public services available around the country via Te Whatu Ora (the Ministry of Health). And private diagnosis can cost up to $9K. Some people wonder if there's any point to diagnosis, but all the research confirms that if you can get one, a diagnosis (especially an early one) results in better outcomes – for the individual in terms of forming a positive 'disability identity' and for the parent / caregiver / educator in terms of understanding and adapting their responses to the behavioural symptoms of FASD, knowing that it's a brain-based disorder.
Click here to go to our section on diagnosis on our Caregiver and Whānau Support page, where you'll find much more information including an interactive map of where to go for assessments.
These are defined as those which exist from birth in the individual with FASD. Diane Malbin (who developed 'The Neurobehavioral Model' see below) states that "FASD is an invisible, brain-based, physical condition" and lists these as the areas of primary characteristics in those with FASD:
These are not present at birth but occur as a result of the challenges of the primary symptoms. They can be better mitigated by the presence of FASD protective factors. These are:
• early diagnosis and interventions
• brain- and trauma-based supports and interventions
• FASD training for caregivers and professionals
• stable home environment
• formation of loving, nurturing connections with caregivers / whānau
• the absence of violence, trauma and adverse childhood experiences (ACEs)
• a positive and stable education experience
Adverse outcomes can develop over time due to 'poor fit' within the environments through which the children move. When a child's primary disabilities are not recognised and the child is deprived of appropriate supports or accommodations, we see these often challenging secondary characteristics emerge as a result. Where there is a poor fit, there are problems. Examples of these problems might be aggression, meltdowns, shutting down, anxiety, becoming easily tired, depression (along with many more).
Diane Malbin lists these as adverse outcomes:
When behaviours (both primary and secondary) are understood differently, the shift is made from judging and reacting to understanding and exploring. There is less anger and frustration. The same old behavioural symptoms now mean something different, because they are understood differently. That is the paradigm shift.
“Children exhibit challenging behaviour when the demands being placed upon them outstrip the skills they have to respond adaptively to those demands. The same can be said of all human beings.”
- Dr. Ross Greene
The possibilities for accommodations are endless, however it does take practice to be able to focus on what might work for your unique child. Accommodations are successful when developed with each individual's brain function in mind.
Because individuals with neurobehavioral challenges have a brain-based, physical disability, they need (and deserve) accommodations for their condition. When we see that they cannot meet an expectation due to their primary characteristics (lagging cognitive skills), we need to adjust those expectations to be in-line with their skills.
For example, if we know they process information slowly (primary characteristic), we need to give them more time and/or provide them with visual cues. If we know they can only hold on to one direction at a time (vs two- or three-step directions), we need to provide one direction at a time. If we know that they are younger socially and emotionally, we need to teach and explain things to them at developmental age level.
The neurobehavioral model is a brain-based approach to responding to those with FASD. Once we understand how their brain function has been injured by alcohol (a form of trauma) we can then begin to understand and react differently to the behaviours that are symptomatic of the brain functioning differently.
If we can keep the fact that we are dealing with a person who has a brain injury at the front of our own minds when dealing with difficult behaviour, it can change our own responses significantly, and this can contribute to an ongoing positive impact on our interactions.
The neurobehavioral model is supported by over 50 years of neuroscience research, and is considered best practice for working with children who have neurobehavioral challenges, including FASD. Research has found this framework increases understanding, lowers frustration, expands options and generally reduces problems.
Parenting through a neurobehavioural lens can decrease the frequency and intensity of adverse outcomes (see below) and, at times, prevent them altogether.
"The gift of the neurobehavioral model is in redefining behavioural symptoms in a manner consistent with research. A profound shift is created in moving from anger to compassion, from blaming to acceptance, lessening frustration on all sides, and improving outcomes." - FASCETS.org
Reference - The Neurobehavioral Model
The language we use around those with FASD is extremely important to enable them to maintain dignity and respect. To ensure we are all on the same page, this guide is essential basic reading for everyone: caregivers, whānau, professionals, educators.
Click here to read more about global common messaging for FASD.
A shift in thinking is needed when working alongside those diagnosed with FASD. Because of their brain-based differences, many typical behaviour management strategies won’t have a positive effect. Tamariki and rangatahi with FASD find it very difficult to learn from consequences, so sending them to their room or taking away a privilege will not have an impact on the child’s behaviour – in fact it is likely to compound the problem by adding to trauma and reinforcing negative self-image for them.
This is a brain-based, invisible, physical disability and is NOT intentional behaviour. The shift is from seeing a child as one who won’t do something to one who can’t - yet.
Memory in those with FASD is almost always severely impacted, so what they learn one day can be completely forgotten the next. Executive function is affected, so the brain function required to do simple things like getting up and getting ready for school can require much more focus and energy than a neurotypical child. This extra effort is utterly exhausting, which is good to take into account.
• Watch this short video by Dr Vanessa Spiller of Jumpstart Psychology in Australia to understand how hard simply leaving the house journey can be for a child with FASD.
• A webinar presented by our Auckland navigator Anna Gundesen, 'Trying Differently Rather than Harder' which outlines key points in understanding how a child's brain works and gives some helpful strategies. Click here to go to our webinar recordings page (you may like to begin with 'FASD: The Basics' webinar on the same page).
• Other excellent resources on understanding FASD as a brain-based disability can be found on Eileen Devine's website. Eileen is a trainer and parenting coach - and a parent of a child with FASD herself. She believes that when we understand the way a child's brain works, we can begin understand the meaning behind challenging behaviours – and positive shifts in the parent-child relationship can occur.
Try and shift your understanding about the behavioural symptoms you see in your child from:
Bad --> Frustrated, defensive, challenged
Lazy --> Trying hard
Lying --> Confabulates, tells you what they think you want to hear
Doesn't try --> Exhausted or can't start
Mean --> Defensive, hurt, abused
Doesn't care, shut down --> Can't show feelings
Refuses to sit still --> Overstimulated
Fussy, demanding --> Oversensitive
Resisting --> Doesn't get it
Trying to make me mad --> Can't remember
Trying to get attention --> Needing contact, support
Acting like a baby --> Dysmaturity
Steals --> Doesn't understand ownership
Doesn't try --> Worried about failing
Inappropriate --> Doesn't understand personal space
Clinicians, educators, social workers, or other front-facing professionals can also forget that the child is often confused, scared and not feeling good about themselves. It is important as a support person to try and shift your feelings from:
Hopelessness --> Hopeful
Fear --> Understanding, knowledge through upskilling
Chaos, confusion --> Organisation, meaningfulness
Anger --> Reframing perceptions, defusing
Power struggles --> Working with, rather than against
Frustration --> Trying differently, not harder
Exhaustion --> Re-engergised, new options to try
No good outcomes --> Seeing and supporting strengths
Try shift to interventions such as:
Traditional behaviour management --> Recognising brain differences
Applying consequences --> Preventing problems
Traditional interventions --> Expanding professional options, creating a toolkit of individualised strategies
Changing people --> Developing effective strategies, changing environments
Working in isolation --> Networking, collaboration with peers.
Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for a neuro-developmental disorder which results from prenatal alcohol exposure (PAE). Individuals with FASD can experience complex physical, behavioural, learning and intellectual problems that persist throughout the lifespan. FASD is diverse and individual depending on when and how much alcohol was consumed during brain development.
Research has consistently found the brain to be the organ most sensitive to the effects of PAE, as the brain is developing throughout the entire pregnancy. Each level of development of the brain (and body) builds on the previous, so if the first part of brain development is affected by alcohol, it affects the rest. The wide range of impacts includes both physical and cognitive (behavioural and learning) effects.
However, physiological issues associated with PAE can include
The IQ range for all on the spectrum is from 20 – 130. Approximately 20% of those diagnosed in New Zealand have an intellectual disability, defined as an IQ below 70. This qualifies them for Disability Support Services – if an IQ of under 70 cannot be proven, individuals are currently not eligible for DSS.
IQ is not the only measure of brain function however – people affected by FASD can have an ‘average’ or even quite high IQ, but are seriously challenged by deficits in their adaptive and executive functioning. For this reason FASD-CAN and others advocate for a change in the eligibility criteria for DSS.
Did you know that approximately 50% of pregnancies are unplanned in Aotearoa NZ and around the world?
At FASD-CAN we know that no woman intentionally harms her unborn baby and we are committed to being non-judgemental and supportive in the presence of FASD.
We know that women from any walk of life who has had an unplanned pregnancy can find themselves in this situation if they didn't know they were pregnant and continued to drink socially – it can happen to anyone.
There is only one thing that prevents FASD – zero exposure to alcohol while pregnant. But New Zealand’s drinking culture and unplanned pregnancy rate are crucial barriers to FASD being prevented. Rates of FASD will reduce when our society stops normalising heavy use of alcohol, and when women are fully informed and supported to make abstaining from alcohol the easy choice during pregnancy.
The Growing Up in NZ study 2010, found that 71% of women reported using alcohol prior to pregnancy, or becoming aware of their pregnancy. 23% of women reported using alcohol in the first trimester, reducing to 13% after the first trimester.
Most women stopped drinking when they found out they were pregnant, but we know that there are many complex reasons why women find it hard to stop drinking, and many misconceptions around why alcohol exposure continues to happen.
The essential knowledge is that NO amount of alcohol is safe in pregnancy at any stage. Everyone in a pregnant woman's whānau and community should support her in this knowledge.
Men should also stop drinking when trying for a baby as more research is showing that alcohol can affect sperm and the genetics passed on to the pēpi / baby. Click here to find out more about the effect of male drinking leading up to pregnancy.
If drinking in the early stages of an unplanned pregnancy has occurred, then stopping immediately will reduce the possibility of your baby being born with FASD. FASD-CAN strongly advises seeking professional help asap via your GP or Lead Maternity Carer if stopping drinking is difficult for you – they may refer to you the Alcohol and Drug Services at your local DHB. Head to the Alcohol.org.nz website to begin with (further resources below).
FASD-CAN is primarily concerned with supporting individuals with FASD and their whānau and caregivers, but there is much more information about alcohol use in pregnancy from some of the NZ-specific and global resources below.
• To find professional help in your area around stopping drinking - try Healthpoint or Alcohol.org.nz
• Our partner organisation Alcohol Healthwatch has an information sheet about prenatal alcohol exposure. Click here to download.
• The Amohia te Wiaora (We're Stronger Without Alcohol) website also has a helpful pamphlet to download and print here.
• This factsheet has specific information on stages of fetal development – what organs are developing when and more. From the US/Canadian Mother To Baby network.
• FASDHub in Australia – FAQs about alcohol and pregnancy.
• FASDHub has further resources about alcohol in pregnancy here.
• The recent Every Moment Matters campaign in Australia is one of the best.
• FASD United in Washington has clear messages for expectant parents from many US health agencies - click here.
We highly recommend watching the two 'FASD101' webinars below – they'll give you a solid understanding of FASD on which to expand your knowledge.
Basic knowledge of FASD is something we're asked for all the time – by caregivers and whānau, professionals and educators. And even for the most knowledgeable of us, it's sometimes good to get a refresher.
This webinar is particularly designed for people who have limited knowledge about FASD but it is also useful for people wanting to review the basics. It will be of interest to caregivers/whānau who may be caring for an individual with FASD, as well as frontline professionals such as teachers, social or justice workers who interact with tamariki or rangatahi who may have FASD.
It's presented by Rose Hawkins, who has created FASD resources and has presented about FASD at many workshops, forums and conferences within Aotearoa and internationally.
Click here to go to the webinar on our resources page.
FASD is a brain-based condition with behavioural symptoms. You'll gain a new understanding of why traditional behavioural techniques are usually ineffective for individuals with brain-based differences – it can open up a whole new world of more positive interaction with your tamariki or rangatahi.
This webinar will educate you on a best-practice approach for increasing understanding of FASD (and other neurobehavioural conditions), reducing frustration, and expanding options. It is intended for professionals, parents, whānau members, and caregivers working with and living with individuals who have confirmed or possible brain-based differences, including FASD.
It's presented by our own FASD Navigator in Tāmaki Makaurau, Anna Gundesen, who also facilitates much of our caregiver training.
Click here to go to the webinar on our resources page.
Stigma can be defined as “damaging attitudes, stereotypes, and discriminatory behaviours” – it’s a common but complex issue with Fetal Alcohol Spectrum Disorder. It can be directed towards the individual or towards biological mothers; it can come from family members, health professionals, the general public, educators and peers.
Stigma is enormously damaging for people with FASD and their whānau – but alcohol use in our society is a problem we all need to own. Alcohol is normalised at every social event, and there are many reasons why anyone can develop an unhealthy relationship with it. Many people think that the biological mothers of people with FASD were alcoholic – when in fact any amount of alcohol at any time during a pregnancy can cause FASD and studies have shown that women with tertiary education are the most likely to drink alcohol throughout pregnancies.
In addition, around 50% of pregnancies in Aotearoa NZ are unplanned – this means that thousands of women from every part of society may not realise they are pregnant for weeks or months and continue to drink socially. Even light social drinking is enough to cause FASD.
Stigma around FASD is deeply problematic because:
People with FASD represent more just a label – they have families and friends, dreams and worries like everyone, and with support they can contribute meaningfully to society. Knowing more about FASD can reduce stigma, as can acknowledging that all members of our society have a role to play in preventing FASD. See tabs below for more information.
Stigma around FASD can cause serious problems because:
People with FASD represent more just a label – they have families and friends, dreams and worries like everyone, and with support they can contribute meaningfully to society. Knowing more about FASD can reduce stigma, as can acknowledging that all members of our society have a role to play in preventing FASD.
Words are powerful! The language we use around FASD can have a larger effect than we may at first realise on how it is perceived.
Australia’s FASD Hub has developed the ‘Language Guide’ – an easy-to-read set of guidelines which explains why some words and ways of phrasing concepts are preferable to others. It suggests more positive language for use in conversations, presentations and reports about FASD to reduce stigma.
If you are concerned that your child has some developmental delays, or there is confirmed prenatal alcohol exposure, the first thing to do is discuss your concerns with your doctor.
Diagnosis of Fetal Alcohol Spectrum Disorder in New Zealand is notoriously difficult. It requires a multi-disciplinary team, including a paediatrician, neuropsychologist, and ideally a speech therapist and occupational therapist to work together over a period of time examining various brain domains which can be affected by prenatal alcohol exposure (there must be substantial impairment in at least three to get a diagnosis).
There are very long waitlists for the few free public services available around the country via Te Whatu Ora (the Ministry of Health). And private diagnosis can cost up to $9K. Some people wonder if there's any point to diagnosis, but all the research confirms that if you can get one, a diagnosis (especially an early one) results in better outcomes – for the individual in terms of forming a positive 'disability identity' and for the parent / caregiver / educator in terms of understanding and adapting their responses to the behavioural symptoms of FASD, knowing that it's a brain-based disorder.
Click here to go to our section on diagnosis on our Caregiver and Whānau Support page, where you'll find much more information including an interactive map of where to go for assessments.
These are defined as those which exist from birth in the individual with FASD. Diane Malbin (who developed 'The Neurobehavioral Model' see below) states that "FASD is an invisible, brain-based, physical condition" and lists these as the areas of primary characteristics in those with FASD:
These are not present at birth but occur as a result of the challenges of the primary symptoms. They can be better mitigated by the presence of FASD protective factors. These are:
• early diagnosis and interventions
• brain- and trauma-based supports and interventions
• FASD training for caregivers and professionals
• stable home environment
• formation of loving, nurturing connections with caregivers / whānau
• the absence of violence, trauma and adverse childhood experiences (ACEs)
• a positive and stable education experience
Adverse outcomes can develop over time due to 'poor fit' within the environments through which the children move. When a child's primary disabilities are not recognised and the child is deprived of appropriate supports or accommodations, we see these often challenging secondary characteristics emerge as a result. Where there is a poor fit, there are problems. Examples of these problems might be aggression, meltdowns, shutting down, anxiety, becoming easily tired, depression (along with many more).
Diane Malbin lists these as adverse outcomes:
When behaviours (both primary and secondary) are understood differently, the shift is made from judging and reacting to understanding and exploring. There is less anger and frustration. The same old behavioural symptoms now mean something different, because they are understood differently. That is the paradigm shift.
“Children exhibit challenging behaviour when the demands being placed upon them outstrip the skills they have to respond adaptively to those demands. The same can be said of all human beings.”
- Dr. Ross Greene
The possibilities for accommodations are endless, however it does take practice to be able to focus on what might work for your unique child. Accommodations are successful when developed with each individual's brain function in mind.
Because individuals with neurobehavioral challenges have a brain-based, physical disability, they need (and deserve) accommodations for their condition. When we see that they cannot meet an expectation due to their primary characteristics (lagging cognitive skills), we need to adjust those expectations to be in-line with their skills.
For example, if we know they process information slowly (primary characteristic), we need to give them more time and/or provide them with visual cues. If we know they can only hold on to one direction at a time (vs two- or three-step directions), we need to provide one direction at a time. If we know that they are younger socially and emotionally, we need to teach and explain things to them at developmental age level.
The neurobehavioral model is a brain-based approach to responding to those with FASD. Once we understand how their brain function has been injured by alcohol (a form of trauma) we can then begin to understand and react differently to the behaviours that are symptomatic of the brain functioning differently.
If we can keep the fact that we are dealing with a person who has a brain injury at the front of our own minds when dealing with difficult behaviour, it can change our own responses significantly, and this can contribute to an ongoing positive impact on our interactions.
The neurobehavioral model is supported by over 50 years of neuroscience research, and is considered best practice for working with children who have neurobehavioral challenges, including FASD. Research has found this framework increases understanding, lowers frustration, expands options and generally reduces problems.
Parenting through a neurobehavioural lens can decrease the frequency and intensity of adverse outcomes (see below) and, at times, prevent them altogether.
"The gift of the neurobehavioral model is in redefining behavioural symptoms in a manner consistent with research. A profound shift is created in moving from anger to compassion, from blaming to acceptance, lessening frustration on all sides, and improving outcomes." - FASCETS.org
Reference - The Neurobehavioral Model
The language we use around those with FASD is extremely important to enable them to maintain dignity and respect. To ensure we are all on the same page, this guide is essential basic reading for everyone: caregivers, whānau, professionals, educators.
Click here to read more about global common messaging for FASD.
A shift in thinking is needed when working alongside those diagnosed with FASD. Because of their brain-based differences, many typical behaviour management strategies won’t have a positive effect. Tamariki and rangatahi with FASD find it very difficult to learn from consequences, so sending them to their room or taking away a privilege will not have an impact on the child’s behaviour – in fact it is likely to compound the problem by adding to trauma and reinforcing negative self-image for them.
This is a brain-based, invisible, physical disability and is NOT intentional behaviour. The shift is from seeing a child as one who won’t do something to one who can’t - yet.
Memory in those with FASD is almost always severely impacted, so what they learn one day can be completely forgotten the next. Executive function is affected, so the brain function required to do simple things like getting up and getting ready for school can require much more focus and energy than a neurotypical child. This extra effort is utterly exhausting, which is good to take into account.
• Watch this short video by Dr Vanessa Spiller of Jumpstart Psychology in Australia to understand how hard simply leaving the house journey can be for a child with FASD.
• A webinar presented by our Auckland navigator Anna Gundesen, 'Trying Differently Rather than Harder' which outlines key points in understanding how a child's brain works and gives some helpful strategies. Click here to go to our webinar recordings page (you may like to begin with 'FASD: The Basics' webinar on the same page).
• Other excellent resources on understanding FASD as a brain-based disability can be found on Eileen Devine's website. Eileen is a trainer and parenting coach - and a parent of a child with FASD herself. She believes that when we understand the way a child's brain works, we can begin understand the meaning behind challenging behaviours – and positive shifts in the parent-child relationship can occur.
Try and shift your understanding about the behavioural symptoms you see in your child from:
Bad --> Frustrated, defensive, challenged
Lazy --> Trying hard
Lying --> Confabulates, tells you what they think you want to hear
Doesn't try --> Exhausted or can't start
Mean --> Defensive, hurt, abused
Doesn't care, shut down --> Can't show feelings
Refuses to sit still --> Overstimulated
Fussy, demanding --> Oversensitive
Resisting --> Doesn't get it
Trying to make me mad --> Can't remember
Trying to get attention --> Needing contact, support
Acting like a baby --> Dysmaturity
Steals --> Doesn't understand ownership
Doesn't try --> Worried about failing
Inappropriate --> Doesn't understand personal space
Clinicians, educators, social workers, or other front-facing professionals can also forget that the child is often confused, scared and not feeling good about themselves. It is important as a support person to try and shift your feelings from:
Hopelessness --> Hopeful
Fear --> Understanding, knowledge through upskilling
Chaos, confusion --> Organisation, meaningfulness
Anger --> Reframing perceptions, defusing
Power struggles --> Working with, rather than against
Frustration --> Trying differently, not harder
Exhaustion --> Re-engergised, new options to try
No good outcomes --> Seeing and supporting strengths
Try shift to interventions such as:
Traditional behaviour management --> Recognising brain differences
Applying consequences --> Preventing problems
Traditional interventions --> Expanding professional options, creating a toolkit of individualised strategies
Changing people --> Developing effective strategies, changing environments
Working in isolation --> Networking, collaboration with peers.
Every year up to 3,000 Kiwi babies are born with fetal alcohol spectrum disorder (FASD). It's permanent brain damage caused by alcohol exposure in the womb. That's about eight babies every day.
15 November 2024
People with FASD often struggle to learn from their past mistakes, no matter how significant...
Read more
23 June 2023
CJ Lutke was born in 1984 and was diagnosed with FASD when she was a baby. She was adopted b...
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09 December 2021
There are a number of short documentaries created by 'Attitude' – a leading producer of awar...
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07 December 2021
Damage to the function of the frontal lobes in the brain means that a person with FASD may...
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24 November 2021
For younger children a fun way to understand FASD is the resource 'My Brain, Me and FASD', p...
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Any alcohol which is drunk by the mother passes directly to the baby via the placenta. Alcohol is a teratogen which means it is a substance which can change the structure and function of developing organs.
The baby experiences the same effects as the mother – but because their internal organs are much smaller, the alcohol actually stays in their systems for much longer and causes more damage. It was once thought that the placenta filtered toxins to protect the baby but we now now that this is not the case.
The baby's brain and central nervous system, which continues to grow throughout gestation, is susceptible to the damaging effects of alcohol at any stage of pregnancy. See chart below – sourced with thanks from Mother to Baby – specialists on teratogens in the USA.
There is no known safe amount of alcohol in pregnancy and no known safe time during a pregnancy to drink. The effect will vary depending on the timing and the quantity of alcohol consumed.
FASD is often associated with binge drinking – four or more standard drinks on an occasion – or continuous moderate drinking – two or more drinks. However lesser amounts have been found to adversely affect brain development in subtle ways. Not all children exposed to alcohol are affected to the same degree, which means genetics also have a role.
The New Zealand Ministry of Health advises that it is safest not to consume any alcohol during pregnancy.
The importance of a father consuming alcohol before conception is an area of active research internationally. FASD is the result of direct exposure to alcohol’s toxic or ‘teratogenic’ effects on the developing cells of the foetus.
Historically it's always been seen as the mother's 'fault' if FASD occurs, so even though many mothers have insisted they did not drink during pregnancy, it's often assumed by professionals that they have played down their alcohol use because of stigma. Consequently, FASD prevention programs have primarily focused on women, where the evidence was certain, and treated paternal drinking as largely a risk factor for encouraging maternal drinking, rather than a risk factor for FASD itself.
However there is now some evidence that alcohol consumed before conception by the father may alter gene expression and set up a predisposing risk factor for some individuals.
For over 30 years, there have been studies seeking to understand if paternal drinking affects fetal and infant health and may contribute to FASD in particular. However, conclusions were unclear until fairly recently, when advances in epigenetic research began to show that paternal factors, and alcohol use in particular, play a larger role in fetal/child health than just passing along genes.
Early studies showed low levels of paternal drinking led to underdeveloped sperm resulting in conception problems and miscarriage. Others showed an increased risk of miscarriage when men drank 10 drinks or more per week in the preconception period, and one study found an association of all cases of ventricle malformation (heart defect) with daily paternal alcohol consumption during the preconception period. A 2016 study focused on birth defects and links to paternal alcohol consumption, age and environmental factors.
Deficiencies in brain size, heart formation, and cognitive and motor abilities (noted as being symptoms of FASD) were linked to paternal alcohol use even when there was no maternal alcohol consumption.
These results provide evidence to expand prevention efforts to men, especially in the preconception period, and to continue research in the field of epigenetics and alcohol-exposed pregnancy.
It is recommended that men intending to conceive do not drink for 60 days before conception.
Read this article (November 2023) for more information about risks to the unborn baby from fathers drinking alcohol.*
* Where this article refers to 'facial abnormalities' it should be noted that these only occur in a small percentage of individuals with FASD (less than 10%) – this fact contributes to FASD being known as the 'the hidden disability.'
Given the information above it seems clear that it will benefit the unborn baby if both partners can abstain from alcohol when planning pregnancies and when the māmā is pregnant. Studies have shown that most drinking by women takes place in the home, and is often instigated by her partner. It's very helpful for women to have that support from fathers in abstinence – in fact there have been global campaigns to this effect, including the 'Pregnant Pause' campaign in Australia.
Read more here on the Australian 'NOFASD' website about how you can help your partner when you're expecting a pēpi.
Sadly, no. FASD causes changes to occur in the underlying cell structures of the organs that affect an individual’s ability to function normally. While some physical birth defects can be repaired such as heart problems, FASD is a lifelong, brain-based disability. However, with understanding, caregiver education and the right kind of support, people affected by FASD can go on to lead fulfilling lives.
Every person affected by FASD is unique. Each person will have their own strengths and areas of need, however a person with FASD will generally have a cluster of challenges that affect them in a variety of ways.
• They may have sensory processing problems which is when the brain misinterprets information from the senses: vision, touch, sound, smell, taste and movement – bright lights, loud noises, scratchy clothes or certain smells for example may be unbearable for them.
• They may struggle with self-regulation and managing everyday activities.
• They may struggle with academic learning.
• They may be impulsive and have difficulty understanding consequences.
• They may struggle with relationships and social skills.
Some of this behaviour can mimic that of other brain-based disabilities and in fact we now know that at least 80% of people living with FASD will also have co-occurring ADHD.
However it's important to remember that all people with FASD will have strengths as well as challenges – finding those strengths and building on them positively is what can enable them to live a good life.
A multi-disciplinary diagnostic team is required to make an FASD diagnosis; it includes both medical and neuropsychological assessment.
It's notoriously difficult to get an FASD diagnosis in Aotearoa due to a low number of qualified professionals, long wait times and prohibitive costs.
For more information about diagnosis in Aotearoa NZ, click here.
Not all babies exposed to alcohol before birth will have FASD. More research is coming out regularly about the many complex factors which, combined with prenatal alcohol consumption, can lead to FASD.
International statistics suggest that between 3%–5% of live births each year have FASD. In New Zealand, it's estimated that up to 3000 babies with FASD could be born annually. That's around eight babies born a day.
No. FASD is only caused during pregnancy. However alcohol does enter breast milk and can disrupt normal feeding, nutrient intake and your baby’s sleep patterns. It's definitely best to express milk beforehand if you are intending to drink alcohol.
There is no safe level of alcohol during pregnancy. It can take just a couple of drinks at the wrong time for permanent brain injury to occur. The best prevention of FASD is zero alcohol during pregnancy.
Currently New Zealand’s drinking culture and unplanned pregnancy rate are crucial barriers to FASD being prevented. Rates of FASD will reduce when our society stops normalising heavy use of alcohol, and when women are fully informed and supported to make abstaining the easy choice during pregnancy. Support from friends, partners and families is especially important.
If drinking in the early stages of an unplanned pregnancy has occurred, then stopping drinking immediately will reduce the possibility of FASD. It is wise to seek professional help if stopping drinking at any time during pregnancy becomes difficult.
FASD-CAN is primarily concerned with supporting individuals with FASD and their whānau and caregivers, but there is much more information about alcohol use on the Alcohol Healthwatch website and the Alcohol Action NZ website.
Your GP or Lead Maternity Carer (midwife) should be a good source of information. If you are struggling to stop drinking, they may refer you to Child Development Services or Alcohol and Drug Services at your local DHB.
An important note is that between 40-50% of pregnancies in Aotearoa New Zealand are unplanned, which means many women from every walk of life may be drinking socially before they realise they are pregnant.
If this occurs, the best advice is to stop drinking immediately and talk to your doctor or midwife.
You'll find more information and help on the links below.
• Read these FAQs about alcohol and pregnancy on the FASDHub website.
• The Alcohol and Drug Helpline has service directories and lots of helpful info – check the website or call 0800 787 797
• Alcohol Healthwatch Aotearoa has a downloadable panui/brochure on alcohol and pregnancy here.
• Actionpoint - Communities targeting alcohol harm
• More info here from the Te Whatu Ora's 'Amohia te Wiaora' website on alcohol harm. They also have a helpful booklet on stopping drinking which you can download here.
• Every Moment Matters is an excellent Australian health campaign launched in 2022 on alcohol and pregnancy
• The National Organisation for FASD in the UK released an alcohol and pregnancy toolkit in June 2023 which includes an interactive e-learning course designed to help midwives and other maternity staff, as well as excellent information in a variety of formats (some interactive) on alcohol and FASD for women who are pregnant or trying to get pregnant. Click here to access the toolkit.
It can be helpful to know what to expect across the lifespan of a person with FASD. NOFASD in Australia have created an information document on this, however, it's important to remember that everyone is different, and much depends on interventions and support in the early years. If this happens, it is possible for many individuals with FASD to lead full lives, including living indpendently and becoming a parent.
Click here to read and download this resource.
Any alcohol which is drunk by the mother passes directly to the baby via the placenta. Alcohol is a teratogen which means it is a substance which can change the structure and function of developing organs.
The baby experiences the same effects as the mother – but because their internal organs are much smaller, the alcohol actually stays in their systems for much longer and causes more damage. It was once thought that the placenta filtered toxins to protect the baby but we now now that this is not the case.
The baby's brain and central nervous system, which continues to grow throughout gestation, is susceptible to the damaging effects of alcohol at any stage of pregnancy. See chart below – sourced with thanks from Mother to Baby – specialists on teratogens in the USA.
There is no known safe amount of alcohol in pregnancy and no known safe time during a pregnancy to drink. The effect will vary depending on the timing and the quantity of alcohol consumed.
FASD is often associated with binge drinking – four or more standard drinks on an occasion – or continuous moderate drinking – two or more drinks. However lesser amounts have been found to adversely affect brain development in subtle ways. Not all children exposed to alcohol are affected to the same degree, which means genetics also have a role.
The New Zealand Ministry of Health advises that it is safest not to consume any alcohol during pregnancy.
The importance of a father consuming alcohol before conception is an area of active research internationally. FASD is the result of direct exposure to alcohol’s toxic or ‘teratogenic’ effects on the developing cells of the foetus.
Historically it's always been seen as the mother's 'fault' if FASD occurs, so even though many mothers have insisted they did not drink during pregnancy, it's often assumed by professionals that they have played down their alcohol use because of stigma. Consequently, FASD prevention programs have primarily focused on women, where the evidence was certain, and treated paternal drinking as largely a risk factor for encouraging maternal drinking, rather than a risk factor for FASD itself.
However there is now some evidence that alcohol consumed before conception by the father may alter gene expression and set up a predisposing risk factor for some individuals.
For over 30 years, there have been studies seeking to understand if paternal drinking affects fetal and infant health and may contribute to FASD in particular. However, conclusions were unclear until fairly recently, when advances in epigenetic research began to show that paternal factors, and alcohol use in particular, play a larger role in fetal/child health than just passing along genes.
Early studies showed low levels of paternal drinking led to underdeveloped sperm resulting in conception problems and miscarriage. Others showed an increased risk of miscarriage when men drank 10 drinks or more per week in the preconception period, and one study found an association of all cases of ventricle malformation (heart defect) with daily paternal alcohol consumption during the preconception period. A 2016 study focused on birth defects and links to paternal alcohol consumption, age and environmental factors.
Deficiencies in brain size, heart formation, and cognitive and motor abilities (noted as being symptoms of FASD) were linked to paternal alcohol use even when there was no maternal alcohol consumption.
These results provide evidence to expand prevention efforts to men, especially in the preconception period, and to continue research in the field of epigenetics and alcohol-exposed pregnancy.
It is recommended that men intending to conceive do not drink for 60 days before conception.
Read this article (November 2023) for more information about risks to the unborn baby from fathers drinking alcohol.*
* Where this article refers to 'facial abnormalities' it should be noted that these only occur in a small percentage of individuals with FASD (less than 10%) – this fact contributes to FASD being known as the 'the hidden disability.'
Given the information above it seems clear that it will benefit the unborn baby if both partners can abstain from alcohol when planning pregnancies and when the māmā is pregnant. Studies have shown that most drinking by women takes place in the home, and is often instigated by her partner. It's very helpful for women to have that support from fathers in abstinence – in fact there have been global campaigns to this effect, including the 'Pregnant Pause' campaign in Australia.
Read more here on the Australian 'NOFASD' website about how you can help your partner when you're expecting a pēpi.
Sadly, no. FASD causes changes to occur in the underlying cell structures of the organs that affect an individual’s ability to function normally. While some physical birth defects can be repaired such as heart problems, FASD is a lifelong, brain-based disability. However, with understanding, caregiver education and the right kind of support, people affected by FASD can go on to lead fulfilling lives.
Every person affected by FASD is unique. Each person will have their own strengths and areas of need, however a person with FASD will generally have a cluster of challenges that affect them in a variety of ways.
• They may have sensory processing problems which is when the brain misinterprets information from the senses: vision, touch, sound, smell, taste and movement – bright lights, loud noises, scratchy clothes or certain smells for example may be unbearable for them.
• They may struggle with self-regulation and managing everyday activities.
• They may struggle with academic learning.
• They may be impulsive and have difficulty understanding consequences.
• They may struggle with relationships and social skills.
Some of this behaviour can mimic that of other brain-based disabilities and in fact we now know that at least 80% of people living with FASD will also have co-occurring ADHD.
However it's important to remember that all people with FASD will have strengths as well as challenges – finding those strengths and building on them positively is what can enable them to live a good life.
A multi-disciplinary diagnostic team is required to make an FASD diagnosis; it includes both medical and neuropsychological assessment.
It's notoriously difficult to get an FASD diagnosis in Aotearoa due to a low number of qualified professionals, long wait times and prohibitive costs.
For more information about diagnosis in Aotearoa NZ, click here.
Not all babies exposed to alcohol before birth will have FASD. More research is coming out regularly about the many complex factors which, combined with prenatal alcohol consumption, can lead to FASD.
International statistics suggest that between 3%–5% of live births each year have FASD. In New Zealand, it's estimated that up to 3000 babies with FASD could be born annually. That's around eight babies born a day.
No. FASD is only caused during pregnancy. However alcohol does enter breast milk and can disrupt normal feeding, nutrient intake and your baby’s sleep patterns. It's definitely best to express milk beforehand if you are intending to drink alcohol.
There is no safe level of alcohol during pregnancy. It can take just a couple of drinks at the wrong time for permanent brain injury to occur. The best prevention of FASD is zero alcohol during pregnancy.
Currently New Zealand’s drinking culture and unplanned pregnancy rate are crucial barriers to FASD being prevented. Rates of FASD will reduce when our society stops normalising heavy use of alcohol, and when women are fully informed and supported to make abstaining the easy choice during pregnancy. Support from friends, partners and families is especially important.
If drinking in the early stages of an unplanned pregnancy has occurred, then stopping drinking immediately will reduce the possibility of FASD. It is wise to seek professional help if stopping drinking at any time during pregnancy becomes difficult.
FASD-CAN is primarily concerned with supporting individuals with FASD and their whānau and caregivers, but there is much more information about alcohol use on the Alcohol Healthwatch website and the Alcohol Action NZ website.
Your GP or Lead Maternity Carer (midwife) should be a good source of information. If you are struggling to stop drinking, they may refer you to Child Development Services or Alcohol and Drug Services at your local DHB.
An important note is that between 40-50% of pregnancies in Aotearoa New Zealand are unplanned, which means many women from every walk of life may be drinking socially before they realise they are pregnant.
If this occurs, the best advice is to stop drinking immediately and talk to your doctor or midwife.
You'll find more information and help on the links below.
• Read these FAQs about alcohol and pregnancy on the FASDHub website.
• The Alcohol and Drug Helpline has service directories and lots of helpful info – check the website or call 0800 787 797
• Alcohol Healthwatch Aotearoa has a downloadable panui/brochure on alcohol and pregnancy here.
• Actionpoint - Communities targeting alcohol harm
• More info here from the Te Whatu Ora's 'Amohia te Wiaora' website on alcohol harm. They also have a helpful booklet on stopping drinking which you can download here.
• Every Moment Matters is an excellent Australian health campaign launched in 2022 on alcohol and pregnancy
• The National Organisation for FASD in the UK released an alcohol and pregnancy toolkit in June 2023 which includes an interactive e-learning course designed to help midwives and other maternity staff, as well as excellent information in a variety of formats (some interactive) on alcohol and FASD for women who are pregnant or trying to get pregnant. Click here to access the toolkit.
It can be helpful to know what to expect across the lifespan of a person with FASD. NOFASD in Australia have created an information document on this, however, it's important to remember that everyone is different, and much depends on interventions and support in the early years. If this happens, it is possible for many individuals with FASD to lead full lives, including living indpendently and becoming a parent.
Click here to read and download this resource.
Our Navigators are here to provide face-to-face mentoring and support to our whānau and caregivers. They can help with advice in justice and education scenarios, too.
If you're a professional health support worker, counsellor or educator you'll find information that will help you with supporting FASD individuals here.
