Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for a neuro-developmental disorder which results from prenatal alcohol exposure. 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 prenatal exposure to alcohol, 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.
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.
However, IQ is not the only measure of brain function – people affected by FASD can have an ‘average’ or even quite high IQ, but are seriously affected by deficits in their adaptive and executive functioning. For this reason FASD-CAN and others advocate for a change in the criteria for DSS.
Click on the Play button below to start the recording.
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.
Rose Hawkins works to create awareness of fetal alcohol spectrum disorder (FASD) and other disabilities and to support people living with these differences and those around them to live their best lives. Rose has created FASD resources and has presented about FASD at many workshops, forums and conferences in Aotearoa and internationally. She is committed to promoting simple ways to help understand and respond to FASD. Rose is a Regional Disability Advisor for the Ministry for Children in Aotearoa New Zealand.
Navigator Anna Gundesen (introduction): Anna brings lived experience to her pilot role as Navigator in Tāmaki Makaurau, where she has been directly supporting caregivers and families caring for tamariki and rangitahi affected by FASD.
Rose mentioned a number of resources which came from the Oranga Tamariki FASD Practice Centre where there is a wealth of strategies.
She is also a fan of the 5S's - Structure, Support, Supervision, keep it Simple, build on Strengths.
There is only one thing that prevents FASD – zero exposure to alcohol while pregnant. But there are complex reasons why preventing alcohol use in pregnancy is hard, and many misconceptions around why alcohol exposure continues to happen.
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.
The essential knowledge is that NO amount of alcohol is safe in pregnancy and everyone in a pregnant woman's whānau and community should support her in this.
If drinking in the early stages of an unplanned pregnancy has occurred, then stopping 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 in pregnancy from some of our partner agencies below.
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.
• Our partner organisation Alcohol Healthwatch has an excellent information sheet about prenatal alcohol exposure and its longterm effects if the child is born with FASD. This is a very helpful resource to pass on to anyone trying to get pregnant, or who is already pregnant. Click here to download.
• The Amohia te Wiaora (We're Stronger Without Alcohol) website also has a helpful pamphlet to download and print here.
.• The Australian website FASDHub has more about alcohol in pregnancy here.
• Pregnant Pause in Australia has lots of information about alcohol in pregnancy.
• There is an excellent campaign running in Australia until 2024 about alcohol in pregnancy called Every Moment Matters.
If you suspect your child has FASD (Fetal Alcohol Spectrum Disorder) but has not yet been diagnosed, it's best to get advice and support early.
Children with FASD can be vastly different from each other. In very young children, it can be hard to detect the early signs unless the child has very obvious physical indicators and one or more reported developmental delays. Some of these issues might not be noticed, they might not present a problem until they start school and need to concentrate, learn, follow the rules and fit in around others. They may be diagnosed as something else that does not fully explain brain differences.
It is important to consider having your child assessed for FASD if:
In June 2023, FASD-CAN commissioned a survey of FASD diagnostic services available across the motu. Please see further information, including an interactive map of diagnosis services in Aotearoa, on our Caregiver and Whānau Support page under 'Getting a Diagnosis'.
FASD is diagnosed in New Zealand using the Canadian diagnostic guidelines. FASD is now the diagnostic term. Other terms such as Fetal Alcohol Syndrome (FAS), partial FASD, Alcohol Related Neurodevelopmental Disorder and Fetal Alcohol Effects are no longer used. Only 5% of individuals show facial features, which occur if exposure is early in pregnancy when the face is forming. These are small eye lengths, a thin upper lip and a flat philtrum (groove running from nose to upper lip). Individuals without these facial features are no less affected by the deleterious effects of alcohol on their brain development.
An FASD diagnosis can be made where there is a history of confirmed alcohol exposure during pregnancy and the child has significant impairments in three or more different areas of brain function. These are evaluated by neuropsychological testing and a ruling out of other causes for the difficulties found, including genetic disorders. Other neurological conditions can be mistaken for FASD and need to be considered in the differential diagnosis when there are signs, such as extremely low IQ. Other conditions such as Attention Deficit Hyperactivity Disorder and mental disorders can co-occur and need to be diagnosed and treated. Other post-natal factors such as deprivation and trauma are considered in the diagnostic formulation. These disadvantages can be alleviated through good care while FASD remains lifelong and requires ongoing management.
The ten brain domains (click for our downloadable info-sheet) assessed for an FASD diagnosis are cognition (IQ), adaptive function (daily living skills), language, motor skills, attention, memory, executive function (reasoning and consequential thinking) and scholastic function. Each domain is assessed with direct testing using standardised tests. An impairment in a domain is assigned when the individual scores below the 3rd percentile for their age (i.e., below 97% of their same-
age peers). Qualitative data such as direct observations and reports of others such as family and teachers is collected in support of diagnosis, as well as a thorough developmental history to consider other factors. The other two domains assessed are neuroanatomy/neurophysiology (such as small head circumference or unexplained seizures) and emotion regulation (anxiety or depressive disorders, including labile mood). The thresholds for each domain to be assigned as impaired are clearly defined in the FASD guidelines and the assessor needs to be suitably trained to use them.
To download an info-sheet about the ten brain domains, click on the pic above.
An FASD assessment needs a clinical team specifically trained in diagnosing FASD, typically a multi-disciplinary team, including a paediatrician, psychologist, and ideally with speech and occupational therapist. Not all District Health Boards across New Zealand have assessment teams able to provide FASD assessments. If you are unable to get a full assessment, request a neuro-developmental assessment by a paediatrician to determine whether there is a neuro-developmental condition which may inform your support that may be consistent with helpful FASD approaches.
Assessors will need credible information about pre-natal alcohol and substance exposure. It is important that such information is gathered and used in a way that does not stigmatise the mother. Alcohol use is a societally promoted activity. As such it is not uncommon for unplanned pregnancies to be exposed to alcohol. Not every prenatally exposed child will have FASD. Each situation is unique and needs to be dealt with as such.
Assessors will also benefit from having information regarding the child’s early developmental history including scholastic reports and/or previous medical reports. A diagnosis of FASD should not be ruled out unless or until a full neurodevelopmental assessment including a battery of neuro-cognitive assessment is completed. This may mean waiting until the child is older than 7 years of age when executive function is mature enough to assess.
Many parents wonder about the value of getting a diagnosis. While many people are averse to ‘labels,’ understanding the cause of the difficulties can be transformational for families. It allows families, caregivers, and others to understand the child’s behaviour and needs better and to know how to respond supportively and appropriately.
When a diagnosis is made a report is provided to explain the findings and describe the areas of strength and impairments so family, caregivers and others working with the child know what to do to nurture the child’s strengths and more effectively accommodate their difficulties. The explanation to the child can be guided by the clinician – how and when will depend on the developmental level and current situation of the child.
Learning about their own brain diversity can help the child to understand their strengths and needs and work together with their caregivers and teachers. Ideally a diagnosis should be hand-in-hand with providing FASD-informed support. It can be helpful to have this support extend to engaging with the child’s school and classroom teachers, alongside the caregiver.
A diagnosis of intellectual disability as part of the FASD, will enable a referral to a Needs Assessment Service Co-ordination organisation (NASC), which may be able to provide disability support services.
Many people with FASD will also have other physical conditions as a result of pre-natal alcohol exposure. It's good to be aware of this possibility and arrange access to medical assessment and support as needed.
FASD-CAN would like to acknowledge Dr Valerie McGinn for her advice and input into this section.
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 secondary behaviours (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
Diane Malbin (who developed 'The Neurobehavioral Model') states that "FASD is an invisible, brain-based, physical condition" and lists these as the areas of primary characteristics in those with FASD:
Secondary behaviours are what the neurobehavioral model describes as 'defensive behaviours'. They are normal reactions to pain and discomfort, and often develop over time due to 'poor fit' within the environments through which the children move. When a child's primary characteristic differences (see list above) are not recognised, and the child is then deprived of appropriate supports or accommodations, we see these often challenging secondary behaviours 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 secondary behaviours:
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 really be able to focus in on what might work for your unique child. Accommodations are successful when developed with each individual child’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.
Reference - Eileen Devine: 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.
It's hard to get a handle on the numbers around FASD here in Aotearoa, because a prevalence study has never been done.
Thanks to studies in other parts of the world such as Canada and Australia, who have a similar social drinking culture to us and a similar colonisation history, we have a fair idea.
A recent article by Paula Penfold has a good angle on FASD numbers in New Zealand.
Read it here.
A shift in thinking is needed when working alongside those diagnosed with FASD. Typical behaviour management strategies don’t work. Remember children diagnosed with FASD won’t learn from consequences. Sending them to their room or taking away a privilege may give the caregiver immediate satisfaction or relief but it will not have an impact on the child’s behaviour.
This is a brain-based, invisible, physical disability and is NOT intentional behaviour. FASD is a lifelong disability and individuals affected by FASD will not grow out of their disability.
The shift is from seeing a child as one who won’t do something to one who can’t.
Bad --> Frustrated, defensive, challenged
Lazy --> Tries hard
Lies --> Confabulates, fills in
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
Parents, caregivers, teachers or others working with children diagnosed under FASD often take their behaviours personally and 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 --> Hope
Fear --> Understanding, knowledge
Chaos, confusion --> Organisation, meaningfulness
Anger --> Reframing perceptions, defusing
Power struggles --> Working with, rather than at
Frustration --> Trying differently, not harder
Exhaustion --> Re-engergised, new options to try
No good outcomes --> Seeing, supporting strengths
Isolation --> Networking, collaboration
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
The above is adapted from 'Trying Differently Rather Than Trying Harder', by Diane Malbin.
Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for a neuro-developmental disorder which results from prenatal alcohol exposure. 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 prenatal exposure to alcohol, 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.
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.
However, IQ is not the only measure of brain function – people affected by FASD can have an ‘average’ or even quite high IQ, but are seriously affected by deficits in their adaptive and executive functioning. For this reason FASD-CAN and others advocate for a change in the criteria for DSS.
Click on the Play button below to start the recording.
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.
Rose Hawkins works to create awareness of fetal alcohol spectrum disorder (FASD) and other disabilities and to support people living with these differences and those around them to live their best lives. Rose has created FASD resources and has presented about FASD at many workshops, forums and conferences in Aotearoa and internationally. She is committed to promoting simple ways to help understand and respond to FASD. Rose is a Regional Disability Advisor for the Ministry for Children in Aotearoa New Zealand.
Navigator Anna Gundesen (introduction): Anna brings lived experience to her pilot role as Navigator in Tāmaki Makaurau, where she has been directly supporting caregivers and families caring for tamariki and rangitahi affected by FASD.
Rose mentioned a number of resources which came from the Oranga Tamariki FASD Practice Centre where there is a wealth of strategies.
She is also a fan of the 5S's - Structure, Support, Supervision, keep it Simple, build on Strengths.
There is only one thing that prevents FASD – zero exposure to alcohol while pregnant. But there are complex reasons why preventing alcohol use in pregnancy is hard, and many misconceptions around why alcohol exposure continues to happen.
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.
The essential knowledge is that NO amount of alcohol is safe in pregnancy and everyone in a pregnant woman's whānau and community should support her in this.
If drinking in the early stages of an unplanned pregnancy has occurred, then stopping 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 in pregnancy from some of our partner agencies below.
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.
• Our partner organisation Alcohol Healthwatch has an excellent information sheet about prenatal alcohol exposure and its longterm effects if the child is born with FASD. This is a very helpful resource to pass on to anyone trying to get pregnant, or who is already pregnant. Click here to download.
• The Amohia te Wiaora (We're Stronger Without Alcohol) website also has a helpful pamphlet to download and print here.
.• The Australian website FASDHub has more about alcohol in pregnancy here.
• Pregnant Pause in Australia has lots of information about alcohol in pregnancy.
• There is an excellent campaign running in Australia until 2024 about alcohol in pregnancy called Every Moment Matters.
If you suspect your child has FASD (Fetal Alcohol Spectrum Disorder) but has not yet been diagnosed, it's best to get advice and support early.
Children with FASD can be vastly different from each other. In very young children, it can be hard to detect the early signs unless the child has very obvious physical indicators and one or more reported developmental delays. Some of these issues might not be noticed, they might not present a problem until they start school and need to concentrate, learn, follow the rules and fit in around others. They may be diagnosed as something else that does not fully explain brain differences.
It is important to consider having your child assessed for FASD if:
In June 2023, FASD-CAN commissioned a survey of FASD diagnostic services available across the motu. Please see further information, including an interactive map of diagnosis services in Aotearoa, on our Caregiver and Whānau Support page under 'Getting a Diagnosis'.
FASD is diagnosed in New Zealand using the Canadian diagnostic guidelines. FASD is now the diagnostic term. Other terms such as Fetal Alcohol Syndrome (FAS), partial FASD, Alcohol Related Neurodevelopmental Disorder and Fetal Alcohol Effects are no longer used. Only 5% of individuals show facial features, which occur if exposure is early in pregnancy when the face is forming. These are small eye lengths, a thin upper lip and a flat philtrum (groove running from nose to upper lip). Individuals without these facial features are no less affected by the deleterious effects of alcohol on their brain development.
An FASD diagnosis can be made where there is a history of confirmed alcohol exposure during pregnancy and the child has significant impairments in three or more different areas of brain function. These are evaluated by neuropsychological testing and a ruling out of other causes for the difficulties found, including genetic disorders. Other neurological conditions can be mistaken for FASD and need to be considered in the differential diagnosis when there are signs, such as extremely low IQ. Other conditions such as Attention Deficit Hyperactivity Disorder and mental disorders can co-occur and need to be diagnosed and treated. Other post-natal factors such as deprivation and trauma are considered in the diagnostic formulation. These disadvantages can be alleviated through good care while FASD remains lifelong and requires ongoing management.
The ten brain domains (click for our downloadable info-sheet) assessed for an FASD diagnosis are cognition (IQ), adaptive function (daily living skills), language, motor skills, attention, memory, executive function (reasoning and consequential thinking) and scholastic function. Each domain is assessed with direct testing using standardised tests. An impairment in a domain is assigned when the individual scores below the 3rd percentile for their age (i.e., below 97% of their same-
age peers). Qualitative data such as direct observations and reports of others such as family and teachers is collected in support of diagnosis, as well as a thorough developmental history to consider other factors. The other two domains assessed are neuroanatomy/neurophysiology (such as small head circumference or unexplained seizures) and emotion regulation (anxiety or depressive disorders, including labile mood). The thresholds for each domain to be assigned as impaired are clearly defined in the FASD guidelines and the assessor needs to be suitably trained to use them.
To download an info-sheet about the ten brain domains, click on the pic above.
An FASD assessment needs a clinical team specifically trained in diagnosing FASD, typically a multi-disciplinary team, including a paediatrician, psychologist, and ideally with speech and occupational therapist. Not all District Health Boards across New Zealand have assessment teams able to provide FASD assessments. If you are unable to get a full assessment, request a neuro-developmental assessment by a paediatrician to determine whether there is a neuro-developmental condition which may inform your support that may be consistent with helpful FASD approaches.
Assessors will need credible information about pre-natal alcohol and substance exposure. It is important that such information is gathered and used in a way that does not stigmatise the mother. Alcohol use is a societally promoted activity. As such it is not uncommon for unplanned pregnancies to be exposed to alcohol. Not every prenatally exposed child will have FASD. Each situation is unique and needs to be dealt with as such.
Assessors will also benefit from having information regarding the child’s early developmental history including scholastic reports and/or previous medical reports. A diagnosis of FASD should not be ruled out unless or until a full neurodevelopmental assessment including a battery of neuro-cognitive assessment is completed. This may mean waiting until the child is older than 7 years of age when executive function is mature enough to assess.
Many parents wonder about the value of getting a diagnosis. While many people are averse to ‘labels,’ understanding the cause of the difficulties can be transformational for families. It allows families, caregivers, and others to understand the child’s behaviour and needs better and to know how to respond supportively and appropriately.
When a diagnosis is made a report is provided to explain the findings and describe the areas of strength and impairments so family, caregivers and others working with the child know what to do to nurture the child’s strengths and more effectively accommodate their difficulties. The explanation to the child can be guided by the clinician – how and when will depend on the developmental level and current situation of the child.
Learning about their own brain diversity can help the child to understand their strengths and needs and work together with their caregivers and teachers. Ideally a diagnosis should be hand-in-hand with providing FASD-informed support. It can be helpful to have this support extend to engaging with the child’s school and classroom teachers, alongside the caregiver.
A diagnosis of intellectual disability as part of the FASD, will enable a referral to a Needs Assessment Service Co-ordination organisation (NASC), which may be able to provide disability support services.
Many people with FASD will also have other physical conditions as a result of pre-natal alcohol exposure. It's good to be aware of this possibility and arrange access to medical assessment and support as needed.
FASD-CAN would like to acknowledge Dr Valerie McGinn for her advice and input into this section.
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 secondary behaviours (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
Diane Malbin (who developed 'The Neurobehavioral Model') states that "FASD is an invisible, brain-based, physical condition" and lists these as the areas of primary characteristics in those with FASD:
Secondary behaviours are what the neurobehavioral model describes as 'defensive behaviours'. They are normal reactions to pain and discomfort, and often develop over time due to 'poor fit' within the environments through which the children move. When a child's primary characteristic differences (see list above) are not recognised, and the child is then deprived of appropriate supports or accommodations, we see these often challenging secondary behaviours 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 secondary behaviours:
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 really be able to focus in on what might work for your unique child. Accommodations are successful when developed with each individual child’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.
Reference - Eileen Devine: 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.
It's hard to get a handle on the numbers around FASD here in Aotearoa, because a prevalence study has never been done.
Thanks to studies in other parts of the world such as Canada and Australia, who have a similar social drinking culture to us and a similar colonisation history, we have a fair idea.
A recent article by Paula Penfold has a good angle on FASD numbers in New Zealand.
Read it here.
A shift in thinking is needed when working alongside those diagnosed with FASD. Typical behaviour management strategies don’t work. Remember children diagnosed with FASD won’t learn from consequences. Sending them to their room or taking away a privilege may give the caregiver immediate satisfaction or relief but it will not have an impact on the child’s behaviour.
This is a brain-based, invisible, physical disability and is NOT intentional behaviour. FASD is a lifelong disability and individuals affected by FASD will not grow out of their disability.
The shift is from seeing a child as one who won’t do something to one who can’t.
Bad --> Frustrated, defensive, challenged
Lazy --> Tries hard
Lies --> Confabulates, fills in
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
Parents, caregivers, teachers or others working with children diagnosed under FASD often take their behaviours personally and 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 --> Hope
Fear --> Understanding, knowledge
Chaos, confusion --> Organisation, meaningfulness
Anger --> Reframing perceptions, defusing
Power struggles --> Working with, rather than at
Frustration --> Trying differently, not harder
Exhaustion --> Re-engergised, new options to try
No good outcomes --> Seeing, supporting strengths
Isolation --> Networking, collaboration
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
The above is adapted from 'Trying Differently Rather Than Trying Harder', by Diane Malbin.
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.
23 June 2023
CJ Lutke was born in 1984 and was diagnosed with FASD when she was a baby. She was adopted b...
Read more
09 December 2021
There are a number of short documentaries created by 'Attitude' – a leading producer of awar...
Read more
07 December 2021
Damage to the function of the frontal lobes in the brain means that a person with FASD may...
Read more
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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FASD can ONLY be caused by maternal alcohol consumption during pregnancy. Any alcohol which is drunk by the mother passes directly to the baby via the placenta. It was once thought that the placenta shielded the baby in some way but we now now that this is not the case.
Alcohol is a teratogen which means it is a substance which can change the structure and function of developing organs.
The brain and central nervous system, which continues to grow throughout gestation, is susceptible to the damaging effects of alcohol at any stage of pregnancy.
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 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 a child do not drink for 60 days before conception as an approach which carries the least risk to the unborn baby.
Read this article (November 2023) for more information about risks to the foetus 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 which includes medical and neuropsychological assessment. Four categories are assessed according to a carefully prescribed criteria – growth deficiencies, gestational alcohol exposure, facial characteristics consistent with Fetal Alcohol Syndrome, and psychological domains.
For more information about diagnosis in Aotearoa NZ, click here.
Not all babies exposed to alcohol before birth will have FASD. International statistics suggest that between 1 – 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) will 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 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.
• 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.
FASD can ONLY be caused by maternal alcohol consumption during pregnancy. Any alcohol which is drunk by the mother passes directly to the baby via the placenta. It was once thought that the placenta shielded the baby in some way but we now now that this is not the case.
Alcohol is a teratogen which means it is a substance which can change the structure and function of developing organs.
The brain and central nervous system, which continues to grow throughout gestation, is susceptible to the damaging effects of alcohol at any stage of pregnancy.
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 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 a child do not drink for 60 days before conception as an approach which carries the least risk to the unborn baby.
Read this article (November 2023) for more information about risks to the foetus 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 which includes medical and neuropsychological assessment. Four categories are assessed according to a carefully prescribed criteria – growth deficiencies, gestational alcohol exposure, facial characteristics consistent with Fetal Alcohol Syndrome, and psychological domains.
For more information about diagnosis in Aotearoa NZ, click here.
Not all babies exposed to alcohol before birth will have FASD. International statistics suggest that between 1 – 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) will 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 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.
• 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.
If you have an individual with FASD in your whānau, you'll find a wealth of information, education, tips, strategies and real life stories here.
If you're a professional health support worker, counsellor or educator you'll find information that will help you with supporting FASD individuals here.
