If you are a foster or adoptive parent and you know (or your think) your child has had prenatal alcohol exposure, we are here for you. If you are a birth parent, we are fully committed to non-judgmental support and advice and we are here for you. If you have had a positive diagnosis of FASD for your tamariki (or even if you haven't, but think it's possible your child may have been exposed to alcohol before birth) – we are here for you.
Almost all of our board members and staff have lived experience of parenting tamariki with FASD, so we get what you may be going through in terms of the brain-based behavioural symptoms of FASD.
Connecting and informing are our main roles, and we provide regular training opportunities for caregivers and whānau. See below for subject-specific information.
It can be very tough being a parent or caregiver of an individual with FASD.
You need to become your child's PA/coach and mentor and it can feel like a 24/7 job. To keep yourself sane and able to stay on the job, self-care is extremely important. If possible you will need as much backup as you can get, and have opportunities for respite.
We have an info-sheet available for download called 'I am a Caregiver', which details the requirements of a tamariki / rangatahi and adult with FASD, with some of the challenges and your role as their caregiver. Read and download it here.
There are some common scenarios with strategies that work in the tabs below – but first up, we'd like to start with some positives...
One of our FASD-CAN members, Letitia (Teesh) Dowie, posted an encouraging piece on our Facebook support group for parents and caregivers.
She said, “On the bad days when I’m at my wits end, I look at this list which I have printed off. [Reading it] redirects my focus from negative to positive. I've added other points for each of my tamariki as they are each different, but amazing in their own unique ways.”
Teesh knows what she’s talking about! She has cared for ‘around 60’ tamariki and rangatahi over her 30+ years of caregiving – and in 2024 she won a prestigious ‘Excellence in Foster Care’ award from Caring Families Aotearoa (CFA). Read more about Teesh and her award here.
People with Fetal Alcohol Spectrum Disorder (FASD) have many positive characteristics and strengths that are often overlooked due to focus on challenges and behavioural symptoms. When supported in the right environment, they can thrive and contribute meaningfully to their families, schools, communities, and workplaces.
Here are some key positive attributes commonly seen in people with FASD:
Creative Strengths
• Highly imaginative – they're great storytellers who love fantasy and play
• Artistic talents – they're skilled in drawing, music, dance, or drama
• Innovative thinkers – they approach problems from unique angles
Emotional Strengths
• Loving and affectionate – they are often deeply caring and loyal
• Empathetic – they're sensitive to the feelings of others
• Forgiving – they let go of conflict quickly and want to reconnect
Cognitive & Learning Strengths
• Visual learners – they often understand better through pictures, diagrams, and hands-on activities
• Strong memory for stories or experiences – especially when emotionally engaging
• Keen observers – they notice details others may miss
Social Strengths
• Friendly and outgoing – they enjoy being around others
• Great with younger children or animals – they're nurturing and gentle
• Funny and entertaining – they love to make others laugh and smile
Practical & Physical Skills
• Hands-on learners – they do well with crafts, construction, or mechanics
• Hard workers – they take pride in helping out when shown how
• Resilient – they bounce back from difficulties with strength and spirit
Character Strengths
• Honest and literal – they say what they mean, with refreshing directness!
• Routine-loving – they can bring consistency and structure to environments
• Determined – they keep trying even when things are hard.
Ever wondered why as simple as getting out the door in the morning without multiple blow-ups, stresses and problems can be so hard? Maybe it's super hard for your FASDling to get up in the first place (sleep is often a big issue), maybe their favourite cereal has run out. Maybe their favourite tee-shirt is in the wash – maybe it just becomes all too hard and they really can't face school at all. And any or all of these things can spark a huge meltdown, and derail the morning for the entire family.
This simple video created by FASD expert Dr Vanessa Spiller is a must-watch.
It lists the surprising number of brain-based skills required to get up, get dressed, have breakfast and leave the house – skills that neurotypical people take very much for granted. Then she gives some great, practical tips and strategies for anticipating and practising what to do if the wheels fall off – preferably BEFORE the wheels fall off.
Communicating patiently and effectively with your FASD child can make the difference between getting out the door for school, avoiding meltdown (theirs or your own) and generally keeping the peace. Some useful phrases for your own internal dialogue include:
“Can’t not won’t.”
Remember that FASD is caused by brain damage.
“Ten-second kids in a one-second world.”
People with FASD need more time than others to process and understand.
“Gravel roads, not highways.”
Atypical neural pathways associated with FASD are easily disrupted.
“Brain, not blame.”
If you find yourself making unhelpful judgements, remember this phrase.
“Adapt the environment, not the person.”
Safe, supportive environments are key for people with FASD to thrive.
“Short, simple, specific, slow.”
Effective communication is essential for people with FASD who won't get sarcasm, irony or often, jokes. Getting them to repeat instructions is also encouraged.
Everyone knows that getting enough sleep can be a huge part of our effectiveness, functionality and mood.
But for those living with FASD, sleep disorders have been well-documented as a problem on a whole new level. Getting to sleep and staying asleep is very hard for them, and the lack of good sleep means that behavioural issues are elevated. Around 80% of parents and carers of children with FASD say their children have problems with sleep. These can include:
It's a big subject, but there are some basic tips which are essential, including avoiding pre-bed excitement, creating a calm quiet bedroom with low stimulus (no clutter), using ear plugs or headphones and heavy blankets. No screen time and calming music can also be helpful.
• We have curated some of the most helpful tips and combined them with our own kaimahi / staff's lived experience to created a Fact Sheet on 'FASD and Sleep' – click here to read.
• A June 2023 report by the Edmonton Fetal Alcohol Network in Alberta, Canada, was prompted by various recent studies and has some helpful strategies – click here to read.
• A UK clinical study on FASD and sleep which questioned over 100 caregivers found that sleep duration and quality is a direct predictor of anxiety in children with FASD. The aim of this piece of work was to outline how important sleep is in those with FASD and to encourage practitioners to consider sleep intervention strategies as a therapeutic priority – click here to read.
Children with FASD may show signs of being hyper-sensitive (feelings things too much) or hypo-sensitive (not feeling things enough) to the senses of touch, taste, smell, sight, and sound – and movement can also be triggering for them.
When getting to school can be derailed for the day by a scratchy jumper, or loud noises, it's important to anticipate sensory overload scenarios before they happen – and it can be handy to have noise cancelling headphones, sunglasses or a fidget toy on hand.
• Click here for a Canadian research paper on sensory processing (November 2024)
• Click here for information from Canada about sensory issues, specifically for children with FASD.
• Click here for information which although not specifically targeted to FASD, has much helpful information.
• Click here for NZ-specific info about neurodivergent sensory issues (not specifically for FASD).
• Click here for a helpful tip sheet about dressing a child with sensory issues.
Everybody is born with an internal sense of body awareness known as 'proprioception' which is initialised via messages sent to our brain from our muscle and joint receptors. Sometimes people affected with Fetal Alcohol Spectrum Disorder have sensory processing difficulties which means that their central nervous system is trying to figure out a way of linking their brain to receptors. Recent research shows that getting kids to do 'heavy work' can focus and calm them in many different ways.
For an introduction to initialising heavy work to help with sensory self-regulation, check out the award-winning, UK-based Griffin Occupational Therapy, who specialise in sensory processing.
For a downloadable worksheet about initialising 'heavy work' click here.
There is much international information on FASD medication online – it's a very big subject however, and we are currently working on some basic guidelines for Aotearoa NZ.
However, in October 2022 we ran a webinar entitled 'Focus on Health: The Clinician's Perspective', in which medication is outlined by two experts from Taranaki. Watch it on our post-webinar recordings page here.
The first thing to establish in moments of extreme behaviour scenarios is whether you are dealing with a trantrum or a meltdown. They may look similar, but they have important differences. The chart below can help with this (thanks to TES teaching resources for this graphic).
Most parents and caregivers of tamariki and rangatahi with FASD have experienced meltdowns – you are not alone! They can happen anywhere and if it's in public, we all feel that others will jump to the conclusion that we are bad parents if we don't 'discipline' the child or young person.
We have developed a series of wallet cards for caregivers which can help in these public meltdown situations – click here to check them out, download and print.
It's really hard to keep your own cool in a meltdown too, but here are some good educational options to help you be ready to cope in any situation.
• Taming tantrums vs. managing meltdowns
• FASDsuccess with Jeff Noble – Barb Clark FASD Educator on serious meltdowns
Nate Sheets of Oregon's Cognitive Supports has some particularly helpful videos on de-escalation - see below.
• Five unhelpful responses we have to escalated kids and adults
Finally, in calm moments, it's great to build self-soothing skills that you can workshop with your tamaiti or rangatahi to co-regulate with them (this builds trust). They can hopefully use these skills instead of other attempts at self-regulation as they get older (which can in some cases turn into substance use or self-harm).
• Four tips to teach self-soothing skills
Toileting issues with FASD can be common, but addressing them can be complex. Continence issues can be four times higher in children with additional needs.
Some issues can be as simple as dehydration – this can cause problems with both bladder and bowel, and constipation can lead to serious long-term medical problems. However there can be more complex scenarios, including issues originating with the brain differences inherent in those with FASD.
Luckily in Aotearoa we have the wonderful Lisa Smith, a children's continence nurse with over two decades of experience. Lisa has been a paediatric nurse for over 35 years – first in the UK, where she was also an Associate Lecturer at Dundee University, and then from 2004 in Aotearoa. In NZ, Lisa worked in the children’s ward at Hastings Hospital where, 17 years ago, she set up a nurse-led paediatric continence service. Her webinar at our hui in 2023 received exceptional feedback.
Lisa has fascinating and very useful insights on how different parts of the brain work to cause problems with toileting, and how this can be supported. The gut-brain axis is now well-documented and we know that improving gut health can have also significant effects on improving mental health and behaviour.
Lisa is super-practical and has a great sense of humour which comes in handy when working with tamariki and parents on the subject of continence. She says she never tires of hearing a child say ‘Mr Poo is a happy poo and comes out in the toilet every day!' Lisa also has lived experience with raising a child with FASD and has applied this lens to her work.
Lisa Smith now runs Children's Continence Services in Taradale, near Napier. Feel free to contact her for support on .
* NOTE: Families can seek funding through WINZ for Child Disability Allowance if their school age child is incontinent.
* SPECIAL OFFER: Since Lisa is a member of FASD-CAN, she is offering a $100 subsidy to other members for an initial continence assessment (normally $250). If you are not already a member, join us here via a quick and easy form. There's no requirement from you – you'll get one email newsletter a month, and if you're a caregiver, you'll receive a joining pack which includes a hardcopy of our fantastic FASD Handbook and other resources.
• ‘FASD & the 4 B's + E - Brain, Bladder, Bowel, Behaviour + Environment’
Please click here or on the pic below to watch a one-hour webinar on the basics of continence issues with Lisa. 
• 'Toilet Tactics for Tamariki with Additional Needs' – webinar series
Please click here or on the pic below to sign up to 'Toilet Tactics for Tamariki with Additional Needs', presented by Lisa, on the Continence NZ website (lots of other great resources here, too). This FREE series of seven webinars covers everything you need to know to help support young people in your care with continence issues and is perfect for health professionals, whānau, teachers and carers. It has been created thanks to support from IHC Foundation NZ.
Being a parent or caregiver of tamariki or rangatahi / children or teenagers with FASD can be tiring and very challenging. Whānau who have children with FASD are often under a great deal of stress.
It's important to do your best to look after yourself so when you need to respond to an extra-stressful situation (and there will always be those) you're in the best place to be able to stop and think about your options. If you're tired you may respond to melt-downs in ways which can make things worse – or yourself and your child – but if you have a bit of 'wiggle room' in your stress levels, it's better for everyone.
This will not always be possible however, even with the best of intentions, so don't beat yourself up if you can't always respond in the way you wish you could!
Mindfulness is a way of learning to be present in the moment, rather than stuck in oppressive or circling thoughts about the past or the future. It's about maintaining an awareness of our thoughts, feelings, bodily sensations, and surrounding environment, through a gentle, nurturing lens.
Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.
Meditation usually is about sitting more formally, focusing on our breath or body sensations. You’re not trying to turn off your thoughts or feelings but learning to observe them passing by without judgment. It’s about training your mind in awareness and gaining a sense of perspective. It takes practice – people often say it's like a muscle and needs time to learn, but once a practice is established it can be extremely fulfilling – many say life-changing.
There are many online and local meditation opportunities – here are just a few:
• The SriChinmoy Centre offers free meditation classes in Auckland, Hamilton and Wellington year-round.
• Daily Calm is a free 10 minute guided meditation, which changes every day and has had over 20 million views. Spoken by American Tamara Levitt.
• Wu Wei Wisdom is another free meditation spoken by David James Lee, a Taoist Monk – from the north of England.
• Headspace is a very popular paid phone app, which delivers a guided meditation to you every day for the price of a takeaway coffee a week or less.
Care Matters is a NZ website which provides up-to-date resources for caregivers and whānau of disabled people. They also run workshops - both face to face and online. Follow them on Facebook to stay informed of these.
This page on the Care Matters site has a couple of video where NZ parents and caregivers talk candidly about what their experience is of caring, how they realised that they needed to prioritise self-care, and how they manage it.
Click here to watch the videos. (The second video is a continuation of the first, they have been broken into two due to length – the first is around 5 minutes, the second around ten).
Eileen Devine is a licensed clinical social worker with over a dozen years of clinical experience, the adoptive mother of a child with FASD, and a certified facilitator through FASCETS, Inc., a leading non-profit specialising in the neurobehavioral model.
She worked with NOFASD Australia to make a couple of fantastic videos to support caregivers of those with FASD.
To watch 'Building Carer Resilience #1', click here.
To watch 'Building Carer Resilience #2', click here.
Check out Eileen's own website here.
This presentation focuses on how understanding that FASD is a brain-based disorder helps to inform caregivers on how best to respond to behaviours often seen in FASD, and examines the importance of a true strengths-based approach.
Managing the stresses of caring for someone with FASD is inextricably linked with this understanding. There is also a discussion of the various stresses that caregivers experience and methods to manage them and care for oneself on an ongoing basis.
Dan Dubovsky has presented regionally, nationally and internationally on Fetal Alcohol Spectrum Disorders, focusing especially on interventions for children, adolescents and adults. For this work, his son Bill has been his mentor and best teacher. Dan has provided training for people working in mental health and substance abuse treatment on loss and grieving, psychopharmacology, development, violence in youth, anger management, team building, stress and burnout, transitions and more.
Click here to watch.
For information, help and support in your journey as a caregiver, start with Carers NZ. They have lots of resources on their website, and they're committed to advocating for the rights of caregivers across Aotearoa.
Note: they may not be specifically FASD-informed.
Click here to go to the Carers NZ website.
If you are looking to hire support staff privately or using your IF (Individualised Funding), check out Flying Kites. They can find the right person to fit your whānau's life and needs.
Click here to download the Flying Kites recruitment pānui.
Diagnosis of Fetal Alcohol Spectrum Disorder in New Zealand is well known to be a difficult process – unless there is documented prenatal alcohol exposure and the baby has the 'sentinel facial features' which can be associated with FASD and which make diagnosis relatively straightforward. These features include small palpebral fissure length (the length of the eye opening), smooth philtrum (the groove between the nose and upper lip) and thin upper lip. They only occur if alcohol is consumed early in pregnancy (days 19-21) when the baby's face is forming.
However, sentinel facial features are present in less than 10% of people with FASD – the vast majority of people do not have any outward physical sign, which is why it's known as a 'hidden' disability.
Diagnosis takes a team of multi-disciplinary specialists 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 motu / country. If you opt for a private diagnosis, the costs can be prohibitive (up to $9K). See tab below for our interactive map of assessment services around Aotearoa New Zealand.
FASD-CAN has advocated for more training for professionals since the first FASD Action Plan 2016-2019. This has not yet materialised, although there has been some forward momentum as at 2025.
Many FASD diagnoses come about in teenage years via court orders, if an individual arrives in the Criminal Justice System (CJS) and their lawyer requests it before trial. However, it is widely accepted that if early screening / diagnosis and educational interventions happened much earlier, it would be much less likely that individuals would end up in courts in the first place.
Some people question the point of diagnosis since, unlike other neurological disorders, FASD is not (yet) recognised as a disability in Aotearoa NZ. Even those with diagnosed FASD do not necessarily gain access to Disability Support Services (DSS) funding unless they have a proven Intellectual Disability (ID) – i.e. an IQ of less than 70.
However, recent research in Aotearoa by the University of Auckland's School of Population Health confirms what other international studies have shown: a diagnosis (especially an early one) results in better healthy outcomes for the individual with FASD 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.
Click here for an excellent introduction / overview on Australia's FASD Hub website about the importance of FASD diagnosis.
If you think your child has FASD but has not been diagnosed, it's best to get advice and support early from your doctor – but keep in mind that some GPs are not highly informed about FASD.
Children with FASD can be vastly different from each other. In very young children, it can be hard to detect the early signs unless, as mentioned in the introduction, the child has obvious physical indicators such as sentinel facial features and one or more reported developmental delays.
Some of these issues might not be noticed, or they might not present a problem until they start school and need to concentrate, learn, follow the rules and fit in around others. Or without knowledge of prenatal alcohol exposure, they may be diagnosed as something else (Autism Spectrum Disorder or ADHD) that does not fully explain brain differences.
It is important to consider having your child assessed for FASD if:
The map below of FASD diagnostic services in Aotearoa New Zealand represents information gathered by FASD-CAN in June 2023 on clinicians in Aotearoa who are currently able to provide an FASD assessment and diagnosis.
When you click on a pin, a window will pop up with information on the service available at that location. Alternatively, click on the list of services to the right which will zoom you in to the location.
Note 1: Please ZOOM IN to see all pins in any area – there are several services in both Auckland and Dunedin for example, but they’re very close together.
Note 2: Please click through on the 'Background to diagnosis in Aotearoa' tab below for further important information.
Note 3: Most of the private services will also travel outside of their region to undertake diagnostic services, so do check all the regions if there is not a service identified in your particular area.
Click on the map below to access interactive pins.
Disclaimer
In providing this information, FASD-CAN Inc. is not endorsing the quality of the assessment, diagnostic report, or the other support services offered by these diagnostic service providers.
If you believe there is an error in the information provided or you are aware of other FASD diagnostic services that are not shown on our map, please contact Kim Milne our Principal Advisor asap at: [email protected]
In response to increasing calls for information from our membership, FASD-CAN set out in June 2023 to establish the availability and location of FASD diagnostic services in Aotearoa. There is currently no other publicly available list of clinicians who can diagnose FASD.
We engaged a very experienced paediatric nurse to undertake this research on our behalf.
An early diagnosis is a key factor for good life outcomes for people with FASD so that appropriate supports and interventions can be put in place for families and at school.
Research shows that failure to engage at school makes rangatahi with FASD more likely to end up with negative life outcomes involving substance use, engagement in self-harm and high-risk scenarios, mental health challenges and involvement in youth and criminal justice.
When we refer to FASD diagnostic services we mean that the particular service or provider has had the specialist training to undertake an assessment to identify if a person meets the FASD diagnosis criteria.
An FASD assessment requires a clinician specifically trained in diagnosing FASD. Ideally, this would be done within a multi-disciplinary team including a paediatrician, neuro-psychologist, a speech and language therapist and an occupational therapist. Having a key worker to work with the family/ whānau during and after the process is also highly desirable.
New Zealand currently uses the FASD diagnostic guidelines developed by Canada, however their use is currently under review by the Aotearoa FASD Diagnostic Guidelines project commissioned by Te Whatu Ora, with a report due out in 2024.
In the questionnaire we sent to clinics and services, we included the following questions:
Some clinics and services chose not to share certain information for various reasons. Some failed to respond at all despite multiple attempts to contact them; these included some Te Whatu Ora sites.
We found only 13 services able to offer an FASD assessment and diagnostic service – but two of those (Linda Gow and Koru Specialist Services) had two separate clinics, so there are in fact 15 clinics in Aotearoa. Some services, such as The FASD Centre Aotearoa in Tamaki Makaurau, Koru Specialist Services and others, will also travel to other parts of the country to undertake an assessment.
Ten of the clinics are located in the North Island but there are only five in the South Island. Perhaps most disappointingly, there are only four Te Whatu Ora publicly-funded services, and they are all in the North Island: Northland, Hawke's Bay, Taranaki and Lower Hutt.
This means Te Whatu Ora does NOT offer publicly-funded FASD diagnostic services in Tāmaki Makaurau/Auckland, Bay of Plenty, Lakes District - Taupo/Rotorua, Gisborne, Wairarapa, Whanganui, Nelson/Marlborough, Canterbury, South Canterbury or Southland.
In some large regions such as the Waikato and the South Island, we found no publicly-funded service provider that could provide an FASD assessment.
Most privately funded assessments cost of between $3,000 - $7,000 which is far beyond most whānau can afford for such an essential service. We also understand from the information received that wait times vary and change, but can be up to two years for publicly-funded services.
Unfortunately, the results of this research have highlighted the lack of progress to improve access to FASD assessment and diagnostic services in our country.
In the FASD Action Plan 2016-2019, the Ministry of Health made a commitment to develop and test tools to support the diagnosis of FASD and to investigate ways to upskill existing clinicians and embed the tools into routine practice.
However, in contradiction of the Action Plan, our review indicates a decrease in FASD diagnostic assessment capability across Aotearoa.
FASD-CAN is extremely disappointed to note this lack of implementation of the Action Plan. Despite the acknowledged benefits of diagnosis described in the Action Plan, there has been no strategy developed to carry out this upskilling as at this date (2023).
Funding and a cohesive professional development strategy is needed to provide more professional training to develop diagnostic capability and capacity.
In early 2025, Dr Joanna Chu of the University of Auckland's School of Population Health and her team released a research paper on FASD diagnosis in Aotearoa.
Caregivers’ experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach.
The paper concluded:
"Accessing a diagnosis of FASD in NZ is a challenging experience for caregivers. A FASD diagnosis is critical for adequate support yet caregivers in NZ face barriers in accessing diagnosis due to limited services and trained professionals to provide a diagnosis. After a diagnosis, people with FASD experience ongoing difficulties throughout life. Future efforts regarding diagnosis would benefit from considering using a life-course perspective to provide recommendations for adequate support for people and their families. There is a pressing need to understand the experiences of caregivers accessing a FASD diagnosis and provide support to the whole family."
Click here to read this important Aotearoa-specific research.
Many parents wonder about the value of getting a diagnosis and averse to their child being 'labelled'. However, understanding the cause of challenges can be transformational for both the person with FASD and their whānau.
For tamariki and whānau – it can be helpful to understand that difficulties are brain-based, and not the result of bad parenting or naughtiness. For the person with FASD it can be liberating to find out that their difficulties are brain-based and are not their fault; it helps them make sense of what has happened in their life. It can also contribute to better understanding of the risks of alcohol in pregnancy and help break the intergenerational cycle of FASD.
For schools and communities – diagnosis is helpful in gaining an understanding of how FASD impacts a child’s learning. More specifically, it means educators can design and implement individual educational interventions which can contribute to lifelong positive outcomes; in communities it raises awareness around alcohol in pregnancy and the need for understanding and support for neurodiversity.
When a diagnosis is made, a report is provided to explain the findings and describe the areas of strengths and challenges so caregivers, whānau, educators and others working with the child are aware where the support and scaffolding is required. The explanation to the child can be guided by the clinician – how and when will depend on the developmental level and their current situation.
A diagnosis of Intellectual Disability (ID - an IQ of less than 70) as part of the overall FASD diagnosis will enable a referral to a Needs Assessment Service Co-ordination organisation (NASC), which may be able to provide DSS funding. Currently, people with FASD are unable to access DSS funding unless they have a proven ID.
There are many online discussions of the value of diagnosis from those with lived experience of it. Here are a few we think highlight some of the important issues.
Lived Experiences with FASD: Patima and Rachel
"Patima and her mother, Rachel, share their challenges getting a diagnosis of a fetal alcohol spectrum disorder (FASD) for Patima due to lack of visible symptoms and medical history. They highlight the importance of recognizing FASDs early and adapting supports accordingly. Patima shares her struggle with understanding her behaviors and emotions before being diagnosed, emphasizing the relief and clarity that came with a diagnosis."
Click here to watch on YouTube.
Identity and FASD with Patricia Kaspar
"Patti Kasper engages in a heartfelt panel discussion with returning guests Antonia Rathbun Lindsay and R.J. Formanek. Together, they explore the profound impact of receiving an FASD diagnosis on one's identity and sense of self. Both R.J. and Patti share their personal journeys, reflecting on how their diagnoses have shaped their understanding of disability and self-acceptance. The conversation delves into the nuances of invisible disabilities, the importance of community support, and the journey towards self-advocacy. Listeners will find solace in the shared experiences of navigating societal stigma, the quest for understanding, and the beauty of embracing one's uniqueness. This episode emphasizes the power of storytelling and connection, encouraging others to reflect on their own identities and experiences with FASD."
Click here to watch on YouTube.
This video features Reinier deSmit talking about his own diagnosis.
This video features global FASD advocate Myles Himmelreich.
Getting a diagnosis of Fetal Alcohol Spectrum Disorder is so much easier if prenatal alcohol exposure is already confirmed. This is why it's essential to avoid stigma for mothers – if they feel unsafe around telling assessors there was alcohol involved in their pregnancy, they may be less inclined to let them know, potentially resulting in an incorrect, or no diagnosis.
At FASD-CAN we believe no mother intentionally harms her child and we know that reasons for alcohol exposure can include addiction (this alone can be very complex) and unplanned pregnancy – around 40% of pregnancies in Aotearoa are unplanned. This can mean the mother has been drinking alcohol but is unaware she is pregnant. FASD is everywhere, in all walks of life.
We are 100% committed to non-judgemental support and compassion for all mothers.
There is essential information around avoiding stigma in the internationally-recognised FASD Language Guide and the FASD Common Messaging Guide (both on our Resources page).
There are a number of routes that can be taken towards an FASD diagnosis. It's never easy – but it's worth it.
• Privately
This is often the route caregivers or whānau go down, IF they have the resources, but it can be prohibitively expensive and there may be long waitlists. See our interactive map for services currently available around the country.
• Oranga Tamariki / Permanent Caregiver Support Services (PCSS)
If your child is being fostered by you, and they are under OT care or your child is eligible for PCSS support then they may pay for diagnosis.
• Ministry of Education
The other avenue is through the MoE (your learning support coordinator / SENCO / RTLB should know more about this) which may apply if you and the school are facing severe behavioural issues – this route can also be funded.
• Youth Justice
If a young person with FASD does end up in trouble with the law (see our advice around this here), the courts may send them for funded diagnosis. However early intervention will always have the best outcomes.
Information post-diagnosis
Australia's NOFASD website has a recent (2025) new digital booklet called “Guide for Parents and Caregivers after a FASD Diagnosis". Confirmation of a FASD diagnosis for their child often comes with a tumult of emotions for parents and carers – relief that they have an answer for the challenges their child experiences, grief due to the knowledge that this is a life-long condition, and confusion about how to move forward to achieve the best possible outcomes for their child.
To assist, NOFASD has launched a new booklet which provides practical information to assist parents and carers – with key facts about behaviours, challenges and characteristics that are likely to be encountered across their child’s lifetime as they grow and develop. Download your free e-copy here.
It can be helpful to talk to other parents who have been through the process in your area. To contact others, you could find a kanohi ki te kanohi (face to face) support group in your area – click here for our list of groups around Aotearoa.
We have a monthly ONLINE caregivers support group – click here for more information and to join us.
You can also join our Facebook support groups. However, you will need to join FASD-CAN as a member first to gain access to these groups – click here to join us via a quick and easy form, wait a few days – and click below. Please answer all questions!)
FASD-CAN NZ Professionals & Parents Group | Facebook
FASD-CAN NZ Parent and Carer Support Group | Facebook
You could also direct your rangatahi with FASD (16 and over) to our new 'Individuals' page.
FASD-CAN Individuals Group | Facebook
Below is a list of funding which MAY be available for those who people with FASD and for those who care for them.
Please note that we would like to add to this list as more information becomes available – if you are aware of other possible funding sources, please let us know!
FASD is recognised as a disability by Te Whatu Ora / Health New Zealand and Manatū Haouora/ the Ministry of Health, but is not funded as a disability – unless the individual has an IQ of 70 or lower (i.e. an Intellectual Disability or ID). Less than 20% of those with FASD have an ID and a formal assessment is required to find out whether this is the case.
If you have had a diagnosis for your child which proves they have an intellectual disability, you may be able to apply for DSS.
Click here for more information about DSS. They may recommend you talk to a Needs Assessment and Service Coordinator (NASC) to begin the process.
Find your local NASC on the Needs Assessment and Service Co-ordination Association website.
IF you find that your child is eligible for Disability Support Services, then you may also be able to claim other benefits such as Carer Support (respite care for you) or Individualised Funding (IF) - person-directed funding from Whaikaha which gives disabled people and their whānau more choice in how they are supported to live their lives fully.
This is a weekly payment from Work and Income NZ which helps carers supporting a child or young person whose parents can't care for them because of a family breakdown.
Find out more here.
Orphan's Benefit is a weekly payment which helps carers supporting a child or young person whose parents have died or can't be found, or can't look after them because they have a serious long-term health condition or incapacity.
Find out more here.
If you're caring for someone else's child and need help with pre-school or school-related costs at the beginning of the year, you may be able to get the School and Year Start-up Payment. It's a one-off payment of between $400-$550 depending on the age of the child. You must apply between mid-January and the end of February to receive this. Apply to WINZ.
Find out more here.
A weekly payment which may be available to help if you are caring full-time for someone.
You can apply through Work and Income NZ.
Find out more here.
This is a fortnightly payment made to the main carer of a child or young person under 18 with a serious disability or health condition.
This payment is for the extra care and attention that you need to give to a disabled child. It is a set amount and doesn't depend on your income, assets or costs.
Parents/caregivers may be eligible if: 1) they are the main carer of the young person, 2) they are a New Zealand citizen or permanent resident, 3) the young person has been assessed as needing constant care and attention for at least 12 months because of a serious disability.
Find out more here.
Whether you can get childcare subsidy and/or OSCAR subsidy depends on how much you and your partner earn. The amount you can earn and still receive childcare subsidy and OSCAR subsidy increased fairly substantially on 1 April 2023 so it may be worth checking if you are now able to get it.
The income thresholds and rates of subsidy are available here for OSCAR subsidy and here for childcare subsidy.
Childcare Subsidy
Childcare Subsidy is a payment that helps families with the cost of pre-school childcare.
If a child receives the Child Disability Allowance (CDA), you are entitled to childcare subsidy up to the age of 6, rather than 5.
Further information about childcare subsidy is available via Work and Income NZ here.
OSCAR subsidy
Out of School Care and Recreation (OSCAR) Subsidy is a payment which helps families with the costs of before and after school care, and holiday programmes.
To get the OSCAR Subsidy you must be the main carer of a child or young person who is under 14 years old (or under 18 years old if the main carer gets a Child Disability Allowance for them), and to be unable to take care of the child or young person because of your own work, study, illness or disability.
Further information about the OSCAR subsidy is available via Work and Income NZ here.
Weekly payment for people with regular, ongoing costs because of a disability (e.g., visits to the doctor, medicines, extra clothing or travel).
Young people (from 16 years) are eligible if they have a disability that is likely to last at least six months; have regular, ongoing costs due to the disability that another agency does not fully cover; are a New Zealand citizen or permanent resident; normally live in New Zealand and intend to stay here. Young people with FASD qualify if they meet criteria.
Young people can apply through Work and Income.
Find out more here.
A weekly payment which may be available to help if you have a health condition, injury, or disability.
You can apply through Work and Income.
Find out more here.
We have a handy flow chart for pathways to funding at school here.
Funded by the Ministries of Health and Education, and Oranga Tamariki.
HCN works with children and young people who have high and complex needs. They work with multiple government and non-government agencies to help families find positive solutions. The service is intensive and lasts between six to 24 months.
Young people may be eligible if they have high and complex needs across at least two sectors (education, health, and care and protection). Young people with suspected FASD qualify if they meet criteria. Two required agencies have to put in a joint referral.
Find out more here.
This is educational funding which may provide support for students with the highest ongoing levels of need for specialist support. The scheme enables them to attend school and participate alongside other students.
More info is available here.
Funded by the Ministry of Education, IWS is a support programme for young people aged 5–14 years who have behaviour, social and learning needs that are highly complex and challenging, and who require support at school, at home and in the community.
IWS takes a bespoke, comprehensive, holistic, youth- and family-driven approach. It has two key criteria: 1) there has to be a need in the school, home, and community, and 2) every other intervention has been used or attempted and was unable to meet needs.
A panel reviews all referrals and decides if the young person is accepted. Applications are made by Ministry of Education Learning Support staff, RTLB and day specialist schools, or fund-holder (ORS) schools.
More info is available here.
Funded by the NZ Police. The purpose of the flexi fund is to enhance tamariki / rangatahi wellbeing following family violence ‘through the purchase of one-off or timebound goods or services.’ This fund can be applied for on behalf of young people up to the age of 18.
More about this fund here.
If you have tamariki / children who with FASD and they are at school, then as caregivers, parents, grandparents and whānau, you will need to advocate strongly for them to enable them to live their best lives.
It can be helpful and empowering to be FASD-informed for this reason: you know your child best – what works and doesn't work for them – and if you can have informed discussions with staff, it's likely to have better outcomes.
There is no doubt that if tamariki with FASD can see the school years through there will be better life outcomes generally, so it's extremely important to begin interventions as early as possible.
If tamariki or rangatahi have suspected or diagnosed FASD, the school must be informed, and the first contact is likely to be your child's school SENCO – Special Education Needs Coordinator. (You'll come across lots of acronyms in education – there's a quick guide in the tab below.)
An essential and excellent resource is the Te Kete Ipurangi inclusive education page. Here you'll find everything you need to know about what's available for special needs students at every level of education, including funding.
PLEASE NOTE: for kaiako / teachers, SENCOs and RTLBS we have an Information for Educators page which is helpful for teachers to begin an understanding of how your FASD ākonga / student may behave and learn differently. Do pass this link on to your child's teacher so you can work together and be on the same page – the best outcomes happen when whānau and teachers have an open pathway to communication (although sadly this may not always be the case).
IWS, ORS, SENCOs and more - in getting funding and help in education, you may feel that your life begins to revolve around acronyms! Here's a FASD basic acronym dictionary for educational requirements.
At school, you and your FASD child will very likely need to develop a relationship with the Special Educational Needs Coordinator (SENCO for short) is a teacher who is responsible for special educational needs in school. Most schools in NZ are obliged to employ a SENCO, whose role is to ensure all students with learning disabilities are well equipped to obtain the right help and support they need at school.
Learning Support Coordinator; Resource Teacher of Learning and Behaviour; Resource Teacher Literacy.
IWS stands for Intensive Wraparound Service. The IWS supports tamariki who have behaviour, social and/or learning needs with a plan to meet each child’s needs. Their needs are highly complex and challenging and they require support at school, at home and in the community. The IWS plans are created to support tamariki at school, at home and in the community. Plans are designed to have a range of activities and interventions, including help from professionals, to help tamariki and whānau develop new skills. Click here for further information from the Ministry of Education.
The Ongoing Resourcing Scheme is for students with high or very high ongoing needs for learning support. For more details from the Ministry of Education, click here.
High and Complex Needs.
In-class Support Funding; Interim Response Funding.
Here's a handy graphic representation of where to start and who to talk to around getting the right help for your tamariki at school.
Click the image to download.
It can be very handy for teachers to have a printout for their wall as a first response resource for a quick reminder of strategy when dealing with students with FASD. This double-sided sheet can be downloaded and printed. Click here or on the pic to download.
It's often very helpful for teachers to have a one-page information sheet that they can keep on file to refer to which gives helpful tips about your child's strengths, challenges, tips on strategies and ways of communicating.
To this end, we've created a Word document that you can download and fill in, then print it out for your tamariki's teacher. We've also included an example sheet that's filled in.
Click here for the sample pdf (see below), and here for your blank Word document to fill in.
Whānau and caregivers in Aotearoa have little option but to be prepared to advocate tirelessly for their child at school – the great benefits of engaging closely with teachers and other educational professionals are well-documented and sadly there are still few clear pathways in our schools that take FASD into account.
From our own experiences, it's enormously important to take time to set up your tamariki at every level of school to enable them to avoid upsets and conflict, achieve their potential and become a valuable member of society.
If this is accomplished at a young age, the better the outcome is for them getting to high school and staying there – but if behavioural problems in early teenage years lead to exclusion from school there's a high chance that things may track badly for your rangatahi in their late teens.
Having said that, once everyone enabled to communicate and work positively together to identify strengths, create positive environments and healthy expectations, amazing successes can occur!
The best resource we have come across in terms of helping whanau and caregivers in Aotearoa to advocate for their FASD children comes from Western Australia Development Disability Council.
It covers issues such as:
Download 'Learning How to Advocate for your Child at School' here.
There is growing awareness of inclusive education both globally and within Aotearoa, but the various stakeholders involved find it hard to agree on. Here we give some background information about the movement – with our own interpretation of it at the end.
In 2008 New Zealand signed the United Nation’s Convention on the Rights of Persons with Disabilities (UNCRPD). Article 24 addressed the right of disabled people to an education.
In 2016 an internationally accepted definition of inclusive education was agreed in the United Nations. It is referred to as 'General Comment 4', and it was adopted to become part of Article 24 within the UNCRPD.
General Comment 4 states:
“The right to inclusive education encompasses a transformation in culture, policy and practice in all formal and informal educational environments to accommodate the differing requirements and identities of individual students, together with a commitment to remove the barriers that impede that possibility...
"Exclusion occurs when students are directly or indirectly prevented from or denied access to education in any form.
"Segregation occurs when the education of students with disabilities is provided in separate environments designed or used to respond to a particular impairment or to various impairments, in isolation from students without disabilities.
"Integration is the process of placing persons with disabilities in existing mainstream educational institutions with the understanding that they can adjust to the standardised requirements of such institutions.
"Inclusion involves a process of systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education to overcome barriers with a vision serving to provide all students of the relevant age range with an equitable and participatory learning experience and the environment that best corresponds to their requirements and preferences. Placing students with disabilities within mainstream classes without accompanying structural changes to, for example, organisation, curriculum and teaching and learning strategies, does not constitute inclusion. Furthermore, integration does not automatically guarantee the transition from segregation to inclusion.”
As at July 2023, the Ministry of Education’s portal Te Kete Ipurangi website states:
“Inclusive education is where all children and young people are engaged and achieve through being present, participating, learning and belonging…
"Inclusive education means that all learners are welcomed by their local early learning service and school, and are supported to play, learn, contribute and participate in all aspects of life at the school or service.
"It is underpinned by the belief that every learner has the potential to make a valuable contribution to the wellbeing of their family, whānau, community and to Aotearoa New Zealand as a whole. It asserts that our diversity is a strength.
"Inclusive education is also about how we develop and design our learning spaces and activities so that all learners are affirmed in their identity and can learn and participate together. It means deliberately identifying and removing barriers to learning and wellbeing.”
Schools in Aotearoa New Zealand are legally required to be inclusive under the Education and Training Act 2020. The right to an inclusive education is also reinforced by the New Zealand Disability Strategy.
The New Zealand Disability Action Plan 2019-2023 sets out priorities to advance the implementation of the UNCRPD and the New Zealand Disability Strategy 2016-2026. Outcome One of the Plan relates to education – click here to read it.
At the 2022 review of the New Zealand government’s compliance with its responsibilities under the UNCRPD, the Committee recommended (in clauses 40, 48 and 54 of their report):
Further details of the recommendations can be found here.
As New Zealand is a signatory to various international conventions that address inclusive education we are bound to the international definition of inclusive education reached in 2016. However, it is clear from reviewing information around the world, there are different interpretations of this definition that meet each country’s individual situations and contexts.
The inclusive education movement in Aotearoa New Zealand has been fighting long and hard for change in the education system, and true inclusion of disabled people in mainstream education. They want to see all residential special schools and special schools closed as soon as possible. They do not accept that these schools should remain an option available to disabled people and their families.
The movement argues these services and supports should be available in the local community. It also advocates for the prompt roll out of the EGL approach in education and argues strongly that inclusion in school is a human right and that New Zealand is currently breaching its international obligations.
FASD-CAN supports the inclusive education movement and the roll out of EGL to our neurodiverse ākonga. However many of our members, particularly caregiver members, want to retain specialist schools (both day and residential) as an education option available to them until the mainstream education system is appropriately set-up and funded to meet the complex needs of our FASD learners.
This is likely to take many years to achieve as it will require not only fundamental transformation and change to long-standing education systems, but also a deep shift in mindsets and belief systems in our communities about disabilities – neurodisabilities in particular.
FASD-CAN believes the definition of inclusive education in Aotearoa New Zealand must also be interpreted within the context of the EGL principles which the government has committed to implementing across its systems and processes.
FASD-CAN’s interpretation of inclusive education has an emphasis on self-determination (choice) and being person-centred as set in the EGL principles, but also recognising the role of whānau in decision-making, as is fundamental in the whānau ora principles.
“Inclusive education is where every ākonga / student is actively supported to reach their potential in partnership with family, whānau and kura / schools, where they have real choice and access to an equitable and mana-enhancing learning experience, in a learning environment that best meets their unique strengths, interests, social, emotional and learning needs.”
Education for tamariki with FASD has many obstacles which can often cause problems in the mainstream school environment.
Before beginning their educational journey, children with FASD may already be struggling with processing information, interpreting body language of others and following instructions. Many other skills are not developing in the same way as their peers, so fitting in at school can be a challenge and school refusal or challenging behaviour may be the result.
Home-schooling, or home education as it's most often now referred to as, can be a viable option for some families. While it does require commitment and has challenges, for those caring for a tamariki with FASD who is struggling in a mainstream school environment, it may be an opportunity to provide learning opportunities for your child in a quiet, calm, home environment, with a learning plan tailored to their specific needs. Some families find home education significantly reduces the anxiety and distress that can accompany school attendance and can lead to better outcomes.
There's an excellent page to consult about all aspects of home education here.
Children learn best when they are interested in a subject and the flexibility of home education allows this to happen regularly.
One of the biggest advantages to home schooling is the flexibility. You can tailor learning programs to suit you, your child and your lifestyle. This also means everyone ends up doing things a little differently.
Yes, you do. In New Zealand children between 6 – 16 years of age must attend a registered school, or have an exemption from school attendance. This exemption is granted by your local office of the Ministry of Education.
You’ll need to convince the Ministry officer that you are able to educate your child 'as regularly and as well' as a registered school. However you are not obliged to follow the national curriculum or create a mini-school at home.
The Ministry of Education, in considering your application, will want to know:
Contact your local Ministry of Education office for an exemption application form.
The Ministry of Education provides a small amount of assistance in the form of an annual ‘supervisory allowance'. This consists of $743 for the first child, $632 for the second, $521 for the third, and $372 for each one after that.
This is paid retrospectively, in two instalments each year, June and December.
There are a number of Homeschooling websites to consult in New Zealand – click here for a good place to start.
Many thanks to Kiwifamilies for some of the information on this page.
This is sadly an all-too-common scenario – and as with most punishments for ākonga / students with FASD, it doesn't work and merely serves to isolate and traumatise them further. Sometimes however, a school has no options. It's a big problem with many facets, but we have some practical advice, a webinar and some personal stories about school exclusion on our Resources page, here.
A company called Youthlaw has been providing free legal help for nearly 30 years to tamariki under the age of 25. They cover various issues including educational funding in NZ. Youthlaw staff solicitors are unique specialist practitioners – they are some of the only lawyers practising in the field of education law. They have the ability to assist with appeals of high needs special needs funding under Section 10 of the Education Act.
Click here for more info, call 0800 UTHLAW (0800 884 529) or email them at [email protected]. See below for flyer.
As with any child, it seems that just when you've got into a routine that's working, it's time to take the next step - and everything changes. For ākonga / students with FASD, coping with these changes can be enormous and overwhelming and for parents – well, the same usually applies!
Here are some links to explore to help with transitions throughout school.
• Care Matters website: successful transitions throughout school years
• Ministry of Education: lots of info here (aimed at kiako/teachers but good for parents, too) on the MoE's National Transition Guidelines
For teens needing support after school to move into tertiary education or work, these sites will be helpful.
• Flying Kites have individualised programme to support planning after school – click here for flyer.
• SpectrumCare have programmes to help transition from school into work (along with many other services)
• CCS Disability Action have a helpful downloadable brochure on their website for transitioning from school to work
• Workbridge provide help nationally for your rangatahi or adult to find and keep a job.
All universities and tertiary education providers have disability services to look after students who may need learning support.
Student Disability Services - The University of Auckland
Disability support services | Manukau Institute of Technology
Disability Support Services - Student Support - AUT
Disability Support Services | Study Support | Unitec
Disability Services – Victoria University of Wellington
Disability Services – University of Canterbury
Disability information and support – University of Otago
Disability services – Massey University
To get an idea on how FASD is currently handled within the education system in Aotearoa, we asked some local experts in FASD education one question each to establish the basics. Click on each name below to go to their opinion.
Claire Edwards - What are the most common problems for students with FASD at school, and how are these needs not met?
Tracey Jongens - What needs to happen ideally in schools for students with FASD and are there any signs of hope and change?
Vanna Blucher - From an educator’s perspective, how can teachers be better supported to allow students with FASD to achieve their potential?
The most common problem facing our tamariki/rangatahi within the education system reflects a much wider problem facing NZ: the lack of recognition of FASD as a disability and a general lack of awareness that FASD is a permanent, lifelong brain injury. This means that our tamariki often struggle to access support and funding as often they do not fit criteria and are not considered ‘bad enough’. Lack of funding results in a lack of support within the classroom (for both student and teacher), a place where our tamariki often struggle to cope with the demands and expectations placed upon them. Often funding comes as the ambulance at the bottom of the cliff when behaviours have escalated and come to a critical point.
There appears to be a distinct lack of training within teacher training institutes around FASD, so teachers are often unaware and not equipped with the skills to deal with the complexities our tamariki present. There is also little support for teachers who are often already dealing with large class numbers and other children with complex needs and neurodiversities.
This and a focus within the classroom on behaviourist techniques such as rewards and consequences (which do not suit children with FASD), often end in behaviours escalating and tamariki/rangatahi being labelled as ‘naughty’ and having behavioural problems.
Within early years and at primary school, our tamariki with FASD often seem to do quite well, possibly due to the more holistic emphasis on learning, but as they hit intermediate/high school there is a huge mismatch in terms of environment and expectations. The fact that they are expected to move from one class to another, one teacher to another and independently follow a timetable does not work well for our learners! If you add sensory processing and memory issues into the mix, it's easy to see how overwhelming this environment would be. Inabilities to regulate emotions without support could end in rangatahi being unable to cope and ending up in trouble.
Then there is the complexity of FASD itself and the fact that it is often ‘invisible’. There’s a saying: ‘if you’ve met one person with FASD, you’ve met one person with FASD!” Levels of skills within FASD can be so different and students can often present as coping on a surface level, but from one day to another they appear to be unable to complete tasks they had previously done.
Without educator training and understanding, it tends to paint a picture of a wilful, manipulative child, rather than a misunderstood one with a brain injury. Often in schools there is a disconnect between the school and the real experts on the child/tamaiti – the whānau! Instead of utilising the knowledge and skills that the whānau have, they can be blamed for behaviours and viewed as interfering parents.
Final thought: we must shift the goals for our learners with FASD from independence to interdependence!
Tracey is a founding member of FASD-CAN Inc. She has spent her life working in the education sector, including primary teaching, teacher training, working as a Resource Teacher of Learning and Behaviour (RTLB), and is currently Head of Department, supporting students with learning needs and leading the development of a programme to support students with ORS at Te Aratai College in Christchurch. Tracey has spent the last 10 years raising awareness around FASD within the education sector throughout NZ and Australia.
Whānaungatanga / relationship is the key to understanding young people with FASD. FASD is an individualised diagnosis. This means that each young person with FASD will have their own areas of strength, their own interests and their own challenges, and no two people with FASD are the same.
It is imperative that each young person is understood as the person they are, that their strengths are recognised and developed and that their challenges are supported. Whānau are the experts on their young people and it is vital that whānau, the young person and schools work together. Whānaungatanga is increasingly being recognised and embodied in practice by schools throughout Aotearoa / NZ.
A young person with FASD must experience success. This success may be possible with support or with scaffolds being provided. Regardless, success is still success. When a young person experiences success it is important that schools and teachers recognise that the success is possible due to the level of support given. It's vital that the support remains in place over time and is developed and built on.
When a teacher takes the time to connect with whānau, to get to know the young person in their care, to find the strengths in that young person, to reflect as the professional when things become challenging and to try a different way, then the young person will experience success.
Schools are providing more flexibility for their learners, recognising the need for inclusive practices such as Universal Design for Learning (UDL), and providing a range of learning and assessment opportunities for tamariki and rangatahi. The development of individualised learning pathways is providing opportunities for learners to learn in the ways that they can enjoy and have success in.
Alongside this is the need to recognise that young people with FASD need ‘time out’ or opportunities to calm. Classrooms can be over-stimulating. Young people with FASD need to focus so much more to self-regulate. It is vital that quiet spaces, ‘brain breaks’, physical activities and sensory supports are available and easily accessed.
As the saying goes ‘Rome wasn't built in a day’ – however, there's a lot to be thankful for in the development of education at this time. Schools and teachers are increasingly aware of the importance of wellbeing. Teachers are encouraged to be reflective practitioners. Whānaungatanga is developing in importance.
Policy from the Ministry of Education now includes FASD as part of the strategies and practice around supporting neurodiversity in schools. The Inclusive TKI website, an online education tool, has a well-researched guide on FASD with excellent strategies provided for teachers.
Vanna is SENCo at Hobsonville Point Secondary School, a Modern Learning Environment in Tāmaki Makaurau. She started her career in primary schools and worked in a range of roles including teacher, SENCo, literacy specialist, and acting deputy principal. She made the jump to high school teaching six years ago when she started at Hobsonville Point and she hasn’t looked back since. Vanna has a particular interest in celebrating the diversity of our learners and ensuring all students can feel success while still engaged in their passions.
Follow Vanna @vannablucher5
As for all neurodiverse learners, kaiako need to take the time to learn what each individual student needs to be successful. It is about knowing your learner and figuring out from a strengths-based perspective what is going to work for them in a classroom, and what success looks like to them.
Students with FASD need both a global and a personal understanding of what works. Most of the time, this understanding comes from trial and error and figuring out what doesn’t work. During this process it’s important to remain empathetic and communicate often with all stakeholders to prevent learning from feeling punitive or deficit-focused.
In our MLE environment we are able to use different spaces within our learning areas to help support overwhelm, or any other sensory issues that may present in a school day. This is reliant on staff being aware of the signs, and having the capability to make the needed shifts in behaviour or environment before anxiety or overwhelm presents. The student needs to be able to leave and reintegrate into the classroom without unnecessary attention.
A specific learning plan will help with guiding the learning journey, while keeping communication open and transparent between everyone working with the student. Whānau are key to this process and the meetings that take place need to be structured in such a way that all parties understand where things are at and what the next steps are.
For a learner with FASD, ensuring goals are achievable, sustainable and personalised will help support any strengths-based programme with support of your RTLB and any other support agencies.
I have made our staff a website which includes a number of helpful resources that can be looked at and used to help build their own understanding and capacity to support a wide range of learning needs, including FASD. By providing resources and reading materials for staff, classroom practice can keep growing and improving so that our learners are being catered for as best we can.
It's tricky enough for neurotypical teens when it's time to leave secondary school and make the move into the adult world – but for those with FASD it can be much harder.
For parents, caregivers and whānau, there's a lot to think about, too: how can you find information about supporting your rangatahi / young adult into tertiary education and what kind would be best; could they manage a job and is there financial support available while they're looking – and what about housing?
Because we are asked about this a lot, we put a team of lived experienced professionals together to find answers to these questions and more. The result is a dedicated section on our website called 'Teens and Beyond' – thanks to funding from Whaikaha / the Ministry of Disabled People.
We'd also like to acknowledge NoFASD Australia for permission to adapt their publication 'Now that you are 18: A guide for young people with FASD transitioning into adulthood'. It was an enormous help to us in structuring this resource. Ngā mihi nui ki NoFASD Australia!
Kia ora aawa atu / thank you very much!
We intend to make this available also as downloadable booklet, and hopefully an Easy-Read document, too (funding dependent).
Please click here to go to our new Teens and Beyond section.
Fetal Alcohol Spectrum Disorder is often thought of as mostly a behavioural disorder, but at least a third of those with FASD will have physiological challenges too, including impairments to motor skills. A motor skill assessment should be completed for all tamariki and young people being assessed for FASD.
Occupational Therapists (OTs) support people to develop their fine and gross motor skills, cognitive skills and social skills. OTs can help identify and develop the strategies, supports and structures to help a person maintain health and safety in the community. Enabling a person with FASD in this way can improve their independent living skills and increase success in their daily life.
OTs can also provide strategies and recommendations to assist with sensory and other processing issues. Children and rangatahi can learn to recognise their own unique sensory challenges and how to regulate them to help them manage stress, enhance their wellbeing and increase participation at school and at home.
If you are looking for an OT, we would recommend that you enquire whether they are FASD-informed.
• This 13-minute American video presented by Marianne Gernetzke, a certified OT, gives basic information on how occupational therapy can help people with FASD. Click here to watch.
• Occupational Therapy New Zealand
Find an OT on this site anywhere in Aoteraoa.
Search for OTs around NZ
• The Occupational Therapy Board of NZ
Has more info and a list of all OTs who are registered in Aotearoa.
Some rangatahi may struggle with mental health issues which need professional help. Following are some of the more common concerns that young people may experience and how you can support them.
Most people, at some point in their life, struggle with low self-esteem. This may be especially true for a young person with a FASD diagnosis because they may feel different, have trouble socially or struggle in school. As a parent, there are things you can do to try and help your young person feel good about themselves, such as:
There are many reasons why young adults with FASD may experiment with drugs or alcohol, such as low self-esteem, peer influence, a need to fit in or as a way to cope with their feelings. Following is a list of strategies that may help you to support your teen.
Self-harming behaviours may take many forms, such as cutting, scratching, not eating, vomiting after eating (bulimia), not allowing wounds to heal, burning or hair pulling. It is important to know that self-harming is most often used as a way of coping.
Only a small number (less than of 10%) of babies are born with what are known as the FASD 'sentinel features'. All three features present will be indicate prenatal alcohol exposure, but it's important to note that the presence of absence of these features do not indicate the severity or mildness of the disorder.
Facial features may include:
• Small eyes – the width of the eyes from inner to outer corner may be shorter than average.
• Thin upper lip – the upper lip may be unusually thin compared to other babies.
• Smooth or flat philtrum – the smooth or flat ridge between the nose and upper lip is a common feature.
Other potential birth / early indications
• Low birth weight– babies with FASD may be born with a lower-than-average birth weight.
• Small head size (microcephaly) – the head circumference may be smaller than normal.
• Slower physical growth – after birth, they may grow more slowly than other infants.
• Alcohol withdrawal symptoms – newborns with FASD may experience withdrawal symptoms such as jitteriness, high-pitched crying, and sleep difficulties.
Long-term physical challenges
Individuals with FASD are many times more likely to be diagnosed with physical health conditions than the general population. Common comorbidities can include:
• Motor skill challenges – coordination
• Cardiac / heart defects
• Joint deformaties or abnormalities
• Hearing and vision issues
• Dental issues such as tooth decay and malformation may require specialized interventions and support.
• Bowel and bladder functionality
• Congenital and chromosomal conditions
• Inflammation – early onset problems with arthritis and other inflammatory diseases.
Understanding the complexities of comorbidities in FASD is crucial because it allows healthcare professionals and support systems to provide comprehensive and integrated care to individuals with FASD, addressing both their FASD-related needs and their co-occurring health conditions. By recognising and addressing these comorbidities, professionals can develop tailored interventions and treatment plans that take into account the unique challenges and strengths of each individual.
Getting both a physical and mental health overview also helps to validate the experiences of individuals and their families. It reduces stigma and misconceptions by emphasising that the challenges faced by individuals with FASD are not a result of personal shortcomings but rather a complex interplay of prenatal alcohol exposure and associated comorbid conditions. This understanding promotes empathy, support and a more inclusive society that recognises the multifaceted nature of FASD and its impact on overall health.
FASD, MENTAL HEALTH, AND COMORBIDITIES, July 27, 2023 – Edmonton and Area Fetal Alcohol Network website.
• Beyond the Brain: The Physical Health and Whole-Body Impact of Fetal Alcohol Spectrum Disorders
An excellent paper was released in mid-June 2025 by the University of Queensland with new and updated evidence for the impact of PAE on different organs, metabolic functions and other health effects which are co-morbid with FASD.
Conclusion: A growing body of evidence suggests that individuals with PAE/FASD may experience comorbidities relating to metabolism; body composition; cardio-renal, immune, and/or reproductive health; as well as hearing, vision, and sleep difficulties. These findings support the concept of FASD as a whole-body diagnosis, emphasising the importance of a holistic approach that supports the overall health and well-being of those with PAE. There are opportunities for future clinical research to focus on further understanding these physical health challenges, how they evolve, and how effective intervention approaches could improve outcomes for individuals with PAE/FASD.
Click here to read the full review.
We found the above chart helpful – click on it, or click here to access a full-sized, downloadable version. Reproduced with thanks to the authors of this paper.
• The 'Lay of the Land' survey
This important research paper, developed by International Adult Leadership Collaboration (ALC) FASD Changemakers (Myles Himmelreich, CJ Lutke and Emily Travis-Hargrove, three adults with FASD), reports the results of a community-based health survey which interviewed over 540 people with FASD. The findings dramatically demonstrated that Fetal Alcohol Spectrum Disorder (FASD) is indeed a 'whole body' diagnosis.
Individuals with FASD have higher frequencies of a wide range of health conditions and develop these earlier than individuals in the general population. An understanding of these results will ensure timely and appropriate diagnosis and treatment for individuals with FASD. Click here to find out more.
This report is currently only available as a chapter in a book – The Routledge Handbook of Social Work and Addictive Behaviours. Note that this book is available at the IHC library in Wellington (they can post it out if you order online).
Please note: FASD-CAN is including information on the subject of sexuality which some may feel is sensitive and emotive, and some of the views expressed in links here are not necessarily endorsed by us. However, we do this because people with FASD struggle in this area, and if the subject is ignored it can become very problematic.
This can be a tricky and emotive subject, but it's an extremely important one. It's very common for those affected by FASD to experience some complex issues around emerging sexuality which can become serious.
As the NOFASD (Australian) website says, "Due to individual differences in learning and cognition it can take longer for people with FASD to understand norms and boundaries around sexuality, and people with FASD are highly represented as both victims and perpetrators of inappropriate sexual behaviours."
Adolescents and teens with FASD are usually surrounded by their peers talking about sex, or beginning relationships – it can be a minefield of confusing messages which must be repeatedly clarified for tamariki and rangatahi with FASD.
In addition, any young person with FASD who has a smartphone can access the internet where they will find, or be shown, pornography. This is a big subject and something that all parents must be be ready for. See tab below for helpful information on this topic.
Because young people with FASD want to be included, they can also be a target for sexual advances by others – or can become involved in coercion themselves.
Don't wait till the teenage years to have conversations about sexuality: a recent Canadian study found that the average age for emerging Inappropriate Sexual Behaviour (ISB – see below) is ten years old.
So it's essential for children and young people with FASD to receive early, clear information around what is and what is not appropriate, alongside supervision where necessary. Chats about sexuality should be regularly revisited and ideas repeated as necessary.
Schools in Aotearoa NZ present Relationships and Sexuality Education (RSE) for adolescents and teens in the last year of primary school and in secondary school. Ministry of Education has online information explaining this area of the curriculum. Click below to find out more.
This area of learning can be confusing to those with FASD – but thankfully, Sexual Wellbeing Aotearoa (formerly Family Planning NZ) have created an excellent resource to use alongside the curriculum for those teaching or caring for intermediate and secondary students with learning disabilities, including FASD. Parents and whānau may also find this resource helpful.
The Colours of Sexuality brochure provides a framework for educators and caregivers to use alongside the RSE curriculum in schools for young people who may need extra support in understanding some of the concepts.
Click here to read more about this and other resources for parents and whānau to help with talking about sexuality with your tamariki or rangatahi.
Here are some great resources to help caregivers talk to their adolescent or teen with FASD about puberty and sexuality.
• Planet Puberty is an Australian guide for parents of adolescents and teens with an intellectual disability. It's an online booklet designed to help you to plan how you’re going to support your child as they transition from childhood into adulthood. The more prepared you are, the more confident you will feel in supporting your child through puberty.
Click here to read and download the Planet Puberty guide.
• Autism NZ has an excellent online article about what's appropriate and inappropriate from a sexuality angle for young people, including where it's ok to take your clothes off; navigating sexuality in their peers; masturbation and sexual abuse. This article also has ideas for workshopping discussion points with your child.
• The IHC Library has a wealth of helpful books about emerging sexuality for both caregivers/parents and for adolescents/teens themselves. The library is based in Wellington, but can post books directly to you for a small fee.
Click here for a list of books on this theme.
The IHC Library also has a couple of videos it commissioned about puberty (one for girls and one for boys) which you can watch with your child.
Billy Grows Up: This film uses a family situation to help young men and boys understand what is happening to them during the puberty transition process. It provides basic information about the physical changes involved in this process, as well as discussion about hygiene, emotional issues and public and private behaviour associated with discovering your own body. The family consists of Billy, who is 11, his Mum and Dad and brother Max. In the film we see Billy being helped by Dad initially who then gets Mum and Max to join in.
Click here to watch 'Billy Grows Up'.
Tara Grows Up: This short film is a guide about puberty for young girls with an intellectual disability, as a preparation for their first period. In the film the family, helps Tara, who is 11, understand what she can expect, why her life will develop this way and how she can manage her period. Good hygiene, the normality of having periods and the need for privacy are all stressed, with a repeat towards the end using Tara’s doll as a prop. The film starts with her Mum talking to Tara, who then involves the rest of the family. Tara’s older sister has a key part to play, explaining and demonstrating all the things that Tara needs to know. It is suggested that the film should be watched first by the parents as well as the caregiver if involved, so that they can make decisions as to how to best use it.
Click here to watch 'Tara Grows Up'.
We're very grateful to the IHC Library to be able to share these resources.
ISB can include inappropriate touching, promiscuous or dangerous sexual behaviour, sexual remarks, lack of physical boundary space, disrespect of privacy, masturbation in inappropriate settings, exposing ones’ self, voyeurism, and obscene or offensive language. Many of these problems can be mitigated by open discussion and clear boundaries which must be constantly reinforced as those with FASD transition into adulthood.
CanFASD, the Canadian National FASD research agency, produced an issue paper in 2018 on ISB in those with FASD. The purpose of this was "to highlight an overview of the current existing research conducted in this area and offer implications for individuals, families, caregivers, and policy makers." It is important reading – here are a few samples of their finding.
• Researchers estimated that ISBs are displayed by 45%-52% of adults with FASD. Rates of ISB associated with FASD appear to increase over the lifespan, with studies demonstrating the rates of ISB in children (ages 6-11) at 39%, 42% in adolescence (ages 12-20), and up to of 65% in adult males. The average age when ISB initially present is approximately 10 years old, although the age of emergence can vary.
• Individuals with developmental disabilities should receive sexual health education which is specifically informed by the person’s needs and disability.
• It is essential that FASD-informed approaches towards adopting healthy sexuality and properly addressing ISB are implemented to help individuals with FASD as part of holistic support. Individuals with FASD are sexual beings like everyone else and need to understand their sexuality and sexual needs in a healthy way.
The research concluded:
"ISB is frequently an adverse life outcome for individuals with FASD ... there is an obvious need for future research to address the significant gaps in this area. Future research should focus on investigations that better outline the cause of ISB in this population, as well as the assessment of FASD and ISB. Researchers also need to examine sex offender treatment programs for individuals with FASD and improve understanding about FASD amongst professionals addressing ISB, specifically those within legal settings contending with those experiencing trouble with the law as a result of ISB."
Click here to download and read this important paper.
In this podcast from the FASD Success Show, Nate Sheets interviews Pascal Gagné, a Canadian expert who is the FASD Team Lead at Health Nexus in Ontario, Canada. (1 hour). Pascal has taught sexuality in various scenarios and this episode, though potentially triggering, confronts and discusses these issues for parents and caregivers of young people with FASD with practical and sensible advice.
Click here to listen.
Pornography can be a very uncomfortable topic for adults to talk about with young people who have FASD or another neurodisability. It is often completely avoided, or else discussed in a way that may be unintentionally shaming.
However, sex is a basic biological function, and regardless of ability or disability most people experience sexual desires, attractions and feelings. Porn can actually be a helpful tool for a person who may not have other avenues for sexual experience – as long as it is ethical, shows consent and doesn’t get in the way of other life functions or activities.
The simple fact is that young people will always have unsupervised access to screens – if not theirs, then someone else's. This means they can and will almost certainly access porn at some point and when viewed through a lens of neurodisability, it can be confusing and possibly dangerous if they are unprepared and think certain kinds of porn is ok or normal.
Here are a few resources around pornography:
• short video: 'Is it normal to watch porn'?
• The Light Project website (NZ) – this site discusses porn for young people from all angles - although it's not specifically geared to neurodisability.
• The Mad Hatter Wellness website is specifically geared to talking about sexuality for those with intellectual disability – it has many helpful resources and blogs. Here's one specifically about discussing porn with your young person.
Impulsivity, eagerness to please, lack of judgement and recklessness all contribute to a well-documented over-representation of rangatahi with FASD within our courts and penal system.
Many parents and caregivers have found it helpful to introduce their rangatahi to the local police. They can explain some of the basics of FASD to them and ensure that caregivers are called direct should their teen or young person get in trouble.
We have a pamphlet on our resources page which you can download and either email or print out to hand over to police – you could even encourage them to ask their colleagues to read it. Click here to access our police pamphlet.
There is more information for police on our professionals page under Police and Justice, including online training for them about FASD.
It can also be a good idea for your rangatahi to carry on them a personalised FASD-CAN wallet card, which they can hand to police that will inform them that they have FASD and also has contact numbers for up to three support people.
However, if problems with the law occur, it's very important to communicate clearly with professionals working in the justice system to ensure they can help both the parent and the young person get through this challenging time.
There is quality, FREE legal advice available from Youth Law - call 0800 UTHLAW, email at [email protected] or find them on Facebook here.
If your child has communication problems within a justice setting you may be able to access help from Talking Trouble Aotearoa. They can help with a Communication Assistant in Youth, District and High Courts and Family Group Conferences for witnesses or defendants who need assistance with understanding and participating in these settings.
This is a 20-minute presentation by Professor Anita Gibbs of the University of Otago. Professor Gibbs is a much-respected lecturer in sociology and criminology and is a registered social worker. Her research studies have included electronic monitoring, mental health, adoption, transcultural parenting, defining social work research, auto-ethnography, and FASD and its effects on families. Anita also facilitates a parent support group for families caring for individuals with FASD in Dunedin.
Anita and her partner have a birth daughter and two boys they adopted from Russia. She shares here a remarkable joint presentation with her teenage son Dima in the context of their own experiences in the NZ justice system.
‘What Works Well and What Doesn’t Work so well for young people with FASD in the Youth Justice System in Aotearoa New Zealand’ was part of a two-day virtual conference, 'Let's Continue the Conversation' at the Lakeland Centre for FASD in Canada in October 2021.
Click on the image below to go to the presentation.
In 2020, Judge John Walker proposed a new pilot scheme to deal specifically with young people who were coming into the New Zealand courts who had a background of trauma and/or neurodiversities. This programme is called the Young Adult List (YAL) and is about ensuring that young people with neurodiversities who find themselves in court know what's going on and if necessary, have a communication assistant. There's more information about the pilot scheme here.
The YAL pilot has been a highly successful and has now been rolled out permanently in Porirua, Gisborne and Hamilton. It uses various approaches including plain language in the courtroom, improved information for judges, sharing information between the Youth, Family, and District Courts and engaging local agencies and community services to ensure a holistic approach to supporting young adults who have a neurodiversity or trauma. It also helps connect young adults to interventions aimed at addressing the root causes of their offending, so they are less likely to offend in the future.
Click here to find out more about the YAL and how to utilise it if you are in one of these regions.
• A screening tool is also now being utilised to identify young adults who may have neuro-disabilities or other characteristics that could affect their ability to comprehend and participate in court proceedings. The goal is to ensure that the court process is fair and accessible for all young adults, taking into account their individual needs and limitations.
• Click here to watch a FASD-CAN webinar with Sally Kedge, a speech-language therapist and court-appointed Communication Assistant from Talking Trouble, and Kesia Sherwood, a young lawyer who did her PhD on the YAL. You'll find other helpful resources from the webinar on this page, too.
Around Aotearoa there are many grandparents raising their mokopuna. It often comes with some big challenges, but you are not alone: a NZ group is dedicated to helping tūpuna raising grandchildren. It's the only organisation dedicated to providing information, advice, support and advocacy specifically for full-time grandparent caregivers.
Click here for more details.
Partners and fathers are enormously important when it comes to FASD.
The first role they play is avoiding alcohol when trying for a baby. New research shows that alcohol does indeed affect sperm and can contribute to miscarriage, birth defects and stillbirth. There is still insufficient evidence to confirm whether prenatal alcohol does play a role in sperm contributing specifically to FASD, but it's worth men avoiding alcohol in any case.
The next role men play is in supporting their partners in an alcohol-free pregnancy – wāhine hapu / pregnant women must be supported by the entire whānau to have an alcohol-free pregnancy and partners can help with this.
However, if a diagnosis of FASD has been reached, there are many ways men can be an involved and contributing parent. Tamariki and rangatahi can be extremely challenging on both individual caregivers / parents and on marriages / partnerships, so it's essential for parents to be on the same page and back each other up. Become as FASD-informed as possible, attend the same courses as your partner, and become a coach, mentor and role model.
Elizabeth Elliot, Chair of the advisory group for FASD-Hub Australia introduces this recording of a webinar on the subject held in September 2022 about the male role in FASD.
Click here to watch the video.
Other resources mentioned in the webinar can be accessed here:
In Aotearoa, we have a few support websites specifically for fathers including:
• Fathers for Families (ten week course through Family Success Matters)
and many more on Health Navigator NZ.
If you are a caregiver or parent of a tamariki or rangatahi with FASD, their long-term welfare is a worrying thought – if anything happens to you, or when eventually you die, who will look after them? What is their legal position and who will support them, understand their needs and make decisions about their welfare on their behalf if they are unable to do so?
You may be concerned about managing and protecting assets or income of your adult offspring. There are legal ramifications that need to be understood around family trusts, welfare guardianship, powers of attorney, property management and how a trust may be useful for managing property. And of course a will is essential.
New Zealand charity Disability Connect runs regular webinars and they have kindly allowed us to share the excellent list of digital resources they send out to their attendees afterwards.
You can subscribe to their newsletter here to stay updated on upcoming Disability Connect webinars (and their Transition Expo in September 2023).
Disability Connect webinars on this subject are run by lawyer Nan Jensen. You can check out Nan’s Facebook page (Abilityworx) and her YouTube channel where you can watch various videos on this subject.
• Health & Disability Commission links
– the Code of Health and Disability Services Consumers' Rights
• Enduring Power of Attorney info
• Legal Services | Disability Connect
Child to Parent Violence and Abuse (CPVA) is a frequently hidden and complex issue which often arises in families caring for an individual with FASD. It continues to be misunderstood and minimised outside of the family home.
New Zealand research (Gibbs, 2024) found that 57% of families in the FASD community are experiencing or have experienced violence from their child – and if you are in this group, you are not alone.
If you are experiencing CPVA please be assured that it is not due to poor parenting – it can be because the young person in your care is struggling to regulate and/or make sense of their emotions. This can be extremely frustrating and can result in a need to dominate, coerce, and gain control over their parents/caregivers.
Displays of aggression and violence by children/adolescents towards adults that are intended to threaten and intimidate and put family safety at risk can include:
People experiencing CPVA report that they are always in a state of hyper-vigilance and feel like they are walking on eggshells waiting for the next explosion. Some of the common mental health effects of family violence are PTSD, depression, anxiety, low self-esteem, suicidal thoughts, hopelessness and fear of the future.
Support groups for people living with CPVA can be extremely helpful – to be with others who understand you and can support you through these moments can be literally life-saving.
Luckily help is at hand in the form of new agency VisAble in Aotearoa which has created a caregiver, parent, grandparent and whānau support group, alongside a range of resources for both caregivers and the professionals who support them. See tab below for more info.
It's essential to keep yourself safe in order to be there for your child in the future.
If you are in immediate danger ring 111. If unable to speak, press 55. Let them know that your child has a neuro-disability.
• Shine Family Violence Agency is a national organisation offering a free helpline, training, and consultancy throughout New Zealand. Call 0508 744 633 for 24/7 help and counselling.
• Lifeline Aotearoa – don't hesitate to reach out by calling them on 0800 543 354 if you are in crisis or having suicidal thoughts.
In early 2025, VisAble ran a survey for parents, caregivers and siblings who had experienced Child to Parent Violence and Aggression (CPVA). The survey was not only for whānau of those with FASD but for any who had experienced CPVA.
The responses were sadly not a surprise to VisAble's Lee Tempest, a FASD-CAN member who was the lead on this study, as she has lived experience herself of CPVA and has worked with many whānau living with it.
The results of the survey have now been summarised in a report. VisAble expressed their gratitude all who took part – this included some FASD-CAN members:
We would like to thank the courageous parents/caregivers, grandparents and siblings who placed their trust in us to share their experiences of child to parent violence and abuse within their home. Your stories are a precious taonga to us and we hope we have honoured your lived experiences in this summary.
Here are some of the quotes from parents who worked with VisAble on the survey:
“Even putting things down in writing helps… it’s good to know others also experience this and that there is someone who is wanting to understand / help families like ours – thank you for doing this.”
“I feel very ashamed that my child behaves this way towards me. I blame myself that our relationship is so dysfunctional that he treats me this way. Ignorant people judging my parenting and coping strategies and giving overly simplistic solutions, which only makes me feel even more alone and stuck in this situation”.
It was interesting to note that '96% of parents/caregivers recognised that the behaviour was often linked to their child’s disability, sensory needs, reduced cognitive and executive skills or mental health and had adapted their parenting to accommodate their child’s needs'.
“[A diagnosis] taught us more about parenting and disabilities. It actually allowed us to see how much our son was struggling and, along with other factors, led to a drastic change in lifestyle, which is still hard but we can see improvement”.
NOTES:
• Lee Tempest was interviewed by Jesse Mulligan on Radio NZ on June 25, 2025. You can listen to the interview here.
• If you are experiencing CPVA, we have information and more support in the CPVA section of our Caregiver and Whānau Support webpage – click here.
• VisAble has a regular support group for whānau experiencing CPVA.
• Note that this survey was conducted with parents and caregivers who are currently experiencing CPVA – not the general population of those who are caring for neurodivergent tamaiti/children.
VisAble is a disabled person-led organisation which was launched in mid-2024. People employed work in the areas of disability rights, safeguarding, adult safeguarding, and the prevention of violence against disabled people.
They are dedicated to ending violence towards tāngata and whānau whaikaha Māori, tagata sa’ilimalo and their āiga-tele, d/Deaf, disabled people, Adults at Risk (across the lifespan) and their families.
Together they have extensive experience and expertise in working with the disability communities, government, police, health, disability and the family violence and sexual violence sectors. Their goal is to create safety and wellbeing and improve outcomes for people who are experiencing violence, abuse and neglect.
VisAble have created a range of CPVA resources for caregivers and professionals - see below.
No one deserves to live in a violent home and everyone has the right to be safe and supported. The main difference between CPVA and other forms of violence is the parent’s inability to leave the situation to protect themselves as they are still legally responsible for the child’s safety. This means that they are an Adult at Risk.
An Adult at Risk is:
A Safeguarding Adults Response
Each family is unique and requires a tailored and culturally safe response. VisAble recommends a Safeguarding Adults from Abuse (SAFA) multi-agency response. They recognise that that there are limited supports in Aotearoa New Zealand for families living with CPVA. They are working on an action plan to build capability within services to equip and enable them to respond safely and appropriately. You can contact VisAble for advice and support by emailing [email protected] or phone 0800 99 88 58.
A support group has been set up for anyone who needs help dealing with the effects of CPVA.
The CPVA Peer Support Group is open to parents/caregivers throughout the year.
The group is held online via Zoom on the first Monday of every month, 7pm to 8.30pm.
For more informationa and to get your Zoom link, please contact: [email protected]
Find out more by downloading the support group flyer here.
VisAble have developed a range of resources for caregivers / parents / grandparents and whānau as well as for professionals supporting whānau dealing with CPVA.
Click the links below to download:
• CPVA Report by Lee Tempest of VisAble, August 2024
• CPVA Resource booklet for caregivers, parents, grandparents and whānau
• CPVA Resource booklet for professionals
If you are a caregiver, or are working with a child who struggles with aggression, this brochure from the Canadian FASD Network may be helpful to pass on. It talks of aggression as an iceberg – what others see is just the tip of complex underlying challenges.
Click here to download and print the brochure.
NoFASD Australia have produced a webinar series called Child and adolescent to parent/carer violence and abuse which are presented by University of Otago Professor Anita Gibbs.
These webinars look at the issue of CPV and the impact that it has on family members, how professionals respond and strategies that may help to reduce the family distress.
Click here to go to the first webinar, and here for the second.
Published 24 January 2024
Professor Gibbs is a registered social worker who has taught social work, sociology and criminology courses for 20 years at the University of Otago. Her research interests include Fetal Alcohol Spectrum Disorder (FASD) and complex disabilities, especially identifying best practice in helping families and best evidence for professionals in their interventions with families.
Abstract: Child and adolescent-to-parent violence and abuse (CAPVA) refers to abusive and violent behaviours by children towards their parents or primary caregivers. The abuse and harmful behaviours can include a full range of physical, emotional, verbal, financial, and material actions over prolonged periods of time, from childhood to young adulthood. Parents and caregivers of children with neuro-developmental conditions are vulnerable to CAPVA, and little research has been undertaken exploring the experiences of caregivers of children with fetal alcohol spectrum disorder (FASD).
In Aotearoa New Zealand, 56 caregivers were interviewed using semi-structured interviews, and over half identified significant levels and impacts of CAPVA, including dealing with physical violence and frequent emotional abuse. Health and stress issues were present in all caregivers interviewed. Caregivers also identified how systemic ignorance and a lack of understanding from caring professionals led to parent blaming, a sense of shame and isolation. Yet caregivers also showed resilience and implemented strategies of de-escalation and distraction.
More specialised practice is needed in this emerging field of family violence and in how to support families with children who have FASD.
Click here to read the full article.
For members only
It can be very tough being a parent or caregiver of an individual with FASD.
You need to become your child's PA/coach and mentor and it can feel like a 24/7 job. To keep yourself sane and able to stay on the job, self-care is extremely important. If possible you will need as much backup as you can get, and have opportunities for respite.
We have an info-sheet available for download called 'I am a Caregiver', which details the requirements of a tamariki / rangatahi and adult with FASD, with some of the challenges and your role as their caregiver. Read and download it here.
There are some common scenarios with strategies that work in the tabs below – but first up, we'd like to start with some positives...
One of our FASD-CAN members, Letitia (Teesh) Dowie, posted an encouraging piece on our Facebook support group for parents and caregivers.
She said, “On the bad days when I’m at my wits end, I look at this list which I have printed off. [Reading it] redirects my focus from negative to positive. I've added other points for each of my tamariki as they are each different, but amazing in their own unique ways.”
Teesh knows what she’s talking about! She has cared for ‘around 60’ tamariki and rangatahi over her 30+ years of caregiving – and in 2024 she won a prestigious ‘Excellence in Foster Care’ award from Caring Families Aotearoa (CFA). Read more about Teesh and her award here.
People with Fetal Alcohol Spectrum Disorder (FASD) have many positive characteristics and strengths that are often overlooked due to focus on challenges and behavioural symptoms. When supported in the right environment, they can thrive and contribute meaningfully to their families, schools, communities, and workplaces.
Here are some key positive attributes commonly seen in people with FASD:
Creative Strengths
• Highly imaginative – they're great storytellers who love fantasy and play
• Artistic talents – they're skilled in drawing, music, dance, or drama
• Innovative thinkers – they approach problems from unique angles
Emotional Strengths
• Loving and affectionate – they are often deeply caring and loyal
• Empathetic – they're sensitive to the feelings of others
• Forgiving – they let go of conflict quickly and want to reconnect
Cognitive & Learning Strengths
• Visual learners – they often understand better through pictures, diagrams, and hands-on activities
• Strong memory for stories or experiences – especially when emotionally engaging
• Keen observers – they notice details others may miss
Social Strengths
• Friendly and outgoing – they enjoy being around others
• Great with younger children or animals – they're nurturing and gentle
• Funny and entertaining – they love to make others laugh and smile
Practical & Physical Skills
• Hands-on learners – they do well with crafts, construction, or mechanics
• Hard workers – they take pride in helping out when shown how
• Resilient – they bounce back from difficulties with strength and spirit
Character Strengths
• Honest and literal – they say what they mean, with refreshing directness!
• Routine-loving – they can bring consistency and structure to environments
• Determined – they keep trying even when things are hard.
Ever wondered why as simple as getting out the door in the morning without multiple blow-ups, stresses and problems can be so hard? Maybe it's super hard for your FASDling to get up in the first place (sleep is often a big issue), maybe their favourite cereal has run out. Maybe their favourite tee-shirt is in the wash – maybe it just becomes all too hard and they really can't face school at all. And any or all of these things can spark a huge meltdown, and derail the morning for the entire family.
This simple video created by FASD expert Dr Vanessa Spiller is a must-watch.
It lists the surprising number of brain-based skills required to get up, get dressed, have breakfast and leave the house – skills that neurotypical people take very much for granted. Then she gives some great, practical tips and strategies for anticipating and practising what to do if the wheels fall off – preferably BEFORE the wheels fall off.
Communicating patiently and effectively with your FASD child can make the difference between getting out the door for school, avoiding meltdown (theirs or your own) and generally keeping the peace. Some useful phrases for your own internal dialogue include:
“Can’t not won’t.”
Remember that FASD is caused by brain damage.
“Ten-second kids in a one-second world.”
People with FASD need more time than others to process and understand.
“Gravel roads, not highways.”
Atypical neural pathways associated with FASD are easily disrupted.
“Brain, not blame.”
If you find yourself making unhelpful judgements, remember this phrase.
“Adapt the environment, not the person.”
Safe, supportive environments are key for people with FASD to thrive.
“Short, simple, specific, slow.”
Effective communication is essential for people with FASD who won't get sarcasm, irony or often, jokes. Getting them to repeat instructions is also encouraged.
Everyone knows that getting enough sleep can be a huge part of our effectiveness, functionality and mood.
But for those living with FASD, sleep disorders have been well-documented as a problem on a whole new level. Getting to sleep and staying asleep is very hard for them, and the lack of good sleep means that behavioural issues are elevated. Around 80% of parents and carers of children with FASD say their children have problems with sleep. These can include:
It's a big subject, but there are some basic tips which are essential, including avoiding pre-bed excitement, creating a calm quiet bedroom with low stimulus (no clutter), using ear plugs or headphones and heavy blankets. No screen time and calming music can also be helpful.
• We have curated some of the most helpful tips and combined them with our own kaimahi / staff's lived experience to created a Fact Sheet on 'FASD and Sleep' – click here to read.
• A June 2023 report by the Edmonton Fetal Alcohol Network in Alberta, Canada, was prompted by various recent studies and has some helpful strategies – click here to read.
• A UK clinical study on FASD and sleep which questioned over 100 caregivers found that sleep duration and quality is a direct predictor of anxiety in children with FASD. The aim of this piece of work was to outline how important sleep is in those with FASD and to encourage practitioners to consider sleep intervention strategies as a therapeutic priority – click here to read.
Children with FASD may show signs of being hyper-sensitive (feelings things too much) or hypo-sensitive (not feeling things enough) to the senses of touch, taste, smell, sight, and sound – and movement can also be triggering for them.
When getting to school can be derailed for the day by a scratchy jumper, or loud noises, it's important to anticipate sensory overload scenarios before they happen – and it can be handy to have noise cancelling headphones, sunglasses or a fidget toy on hand.
• Click here for a Canadian research paper on sensory processing (November 2024)
• Click here for information from Canada about sensory issues, specifically for children with FASD.
• Click here for information which although not specifically targeted to FASD, has much helpful information.
• Click here for NZ-specific info about neurodivergent sensory issues (not specifically for FASD).
• Click here for a helpful tip sheet about dressing a child with sensory issues.
Everybody is born with an internal sense of body awareness known as 'proprioception' which is initialised via messages sent to our brain from our muscle and joint receptors. Sometimes people affected with Fetal Alcohol Spectrum Disorder have sensory processing difficulties which means that their central nervous system is trying to figure out a way of linking their brain to receptors. Recent research shows that getting kids to do 'heavy work' can focus and calm them in many different ways.
For an introduction to initialising heavy work to help with sensory self-regulation, check out the award-winning, UK-based Griffin Occupational Therapy, who specialise in sensory processing.
For a downloadable worksheet about initialising 'heavy work' click here.
There is much international information on FASD medication online – it's a very big subject however, and we are currently working on some basic guidelines for Aotearoa NZ.
However, in October 2022 we ran a webinar entitled 'Focus on Health: The Clinician's Perspective', in which medication is outlined by two experts from Taranaki. Watch it on our post-webinar recordings page here.
The first thing to establish in moments of extreme behaviour scenarios is whether you are dealing with a trantrum or a meltdown. They may look similar, but they have important differences. The chart below can help with this (thanks to TES teaching resources for this graphic).
Most parents and caregivers of tamariki and rangatahi with FASD have experienced meltdowns – you are not alone! They can happen anywhere and if it's in public, we all feel that others will jump to the conclusion that we are bad parents if we don't 'discipline' the child or young person.
We have developed a series of wallet cards for caregivers which can help in these public meltdown situations – click here to check them out, download and print.
It's really hard to keep your own cool in a meltdown too, but here are some good educational options to help you be ready to cope in any situation.
• Taming tantrums vs. managing meltdowns
• FASDsuccess with Jeff Noble – Barb Clark FASD Educator on serious meltdowns
Nate Sheets of Oregon's Cognitive Supports has some particularly helpful videos on de-escalation - see below.
• Five unhelpful responses we have to escalated kids and adults
Finally, in calm moments, it's great to build self-soothing skills that you can workshop with your tamaiti or rangatahi to co-regulate with them (this builds trust). They can hopefully use these skills instead of other attempts at self-regulation as they get older (which can in some cases turn into substance use or self-harm).
• Four tips to teach self-soothing skills
Toileting issues with FASD can be common, but addressing them can be complex. Continence issues can be four times higher in children with additional needs.
Some issues can be as simple as dehydration – this can cause problems with both bladder and bowel, and constipation can lead to serious long-term medical problems. However there can be more complex scenarios, including issues originating with the brain differences inherent in those with FASD.
Luckily in Aotearoa we have the wonderful Lisa Smith, a children's continence nurse with over two decades of experience. Lisa has been a paediatric nurse for over 35 years – first in the UK, where she was also an Associate Lecturer at Dundee University, and then from 2004 in Aotearoa. In NZ, Lisa worked in the children’s ward at Hastings Hospital where, 17 years ago, she set up a nurse-led paediatric continence service. Her webinar at our hui in 2023 received exceptional feedback.
Lisa has fascinating and very useful insights on how different parts of the brain work to cause problems with toileting, and how this can be supported. The gut-brain axis is now well-documented and we know that improving gut health can have also significant effects on improving mental health and behaviour.
Lisa is super-practical and has a great sense of humour which comes in handy when working with tamariki and parents on the subject of continence. She says she never tires of hearing a child say ‘Mr Poo is a happy poo and comes out in the toilet every day!' Lisa also has lived experience with raising a child with FASD and has applied this lens to her work.
Lisa Smith now runs Children's Continence Services in Taradale, near Napier. Feel free to contact her for support on .
* NOTE: Families can seek funding through WINZ for Child Disability Allowance if their school age child is incontinent.
* SPECIAL OFFER: Since Lisa is a member of FASD-CAN, she is offering a $100 subsidy to other members for an initial continence assessment (normally $250). If you are not already a member, join us here via a quick and easy form. There's no requirement from you – you'll get one email newsletter a month, and if you're a caregiver, you'll receive a joining pack which includes a hardcopy of our fantastic FASD Handbook and other resources.
• ‘FASD & the 4 B's + E - Brain, Bladder, Bowel, Behaviour + Environment’
Please click here or on the pic below to watch a one-hour webinar on the basics of continence issues with Lisa.
• 'Toilet Tactics for Tamariki with Additional Needs' – webinar series
Please click here or on the pic below to sign up to 'Toilet Tactics for Tamariki with Additional Needs', presented by Lisa, on the Continence NZ website (lots of other great resources here, too). This FREE series of seven webinars covers everything you need to know to help support young people in your care with continence issues and is perfect for health professionals, whānau, teachers and carers. It has been created thanks to support from IHC Foundation NZ.
Being a parent or caregiver of tamariki or rangatahi / children or teenagers with FASD can be tiring and very challenging. Whānau who have children with FASD are often under a great deal of stress.
It's important to do your best to look after yourself so when you need to respond to an extra-stressful situation (and there will always be those) you're in the best place to be able to stop and think about your options. If you're tired you may respond to melt-downs in ways which can make things worse – or yourself and your child – but if you have a bit of 'wiggle room' in your stress levels, it's better for everyone.
This will not always be possible however, even with the best of intentions, so don't beat yourself up if you can't always respond in the way you wish you could!
Mindfulness is a way of learning to be present in the moment, rather than stuck in oppressive or circling thoughts about the past or the future. It's about maintaining an awareness of our thoughts, feelings, bodily sensations, and surrounding environment, through a gentle, nurturing lens.
Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.
Meditation usually is about sitting more formally, focusing on our breath or body sensations. You’re not trying to turn off your thoughts or feelings but learning to observe them passing by without judgment. It’s about training your mind in awareness and gaining a sense of perspective. It takes practice – people often say it's like a muscle and needs time to learn, but once a practice is established it can be extremely fulfilling – many say life-changing.
There are many online and local meditation opportunities – here are just a few:
• The SriChinmoy Centre offers free meditation classes in Auckland, Hamilton and Wellington year-round.
• Daily Calm is a free 10 minute guided meditation, which changes every day and has had over 20 million views. Spoken by American Tamara Levitt.
• Wu Wei Wisdom is another free meditation spoken by David James Lee, a Taoist Monk – from the north of England.
• Headspace is a very popular paid phone app, which delivers a guided meditation to you every day for the price of a takeaway coffee a week or less.
Care Matters is a NZ website which provides up-to-date resources for caregivers and whānau of disabled people. They also run workshops - both face to face and online. Follow them on Facebook to stay informed of these.
This page on the Care Matters site has a couple of video where NZ parents and caregivers talk candidly about what their experience is of caring, how they realised that they needed to prioritise self-care, and how they manage it.
Click here to watch the videos. (The second video is a continuation of the first, they have been broken into two due to length – the first is around 5 minutes, the second around ten).
Eileen Devine is a licensed clinical social worker with over a dozen years of clinical experience, the adoptive mother of a child with FASD, and a certified facilitator through FASCETS, Inc., a leading non-profit specialising in the neurobehavioral model.
She worked with NOFASD Australia to make a couple of fantastic videos to support caregivers of those with FASD.
To watch 'Building Carer Resilience #1', click here.
To watch 'Building Carer Resilience #2', click here.
Check out Eileen's own website here.
This presentation focuses on how understanding that FASD is a brain-based disorder helps to inform caregivers on how best to respond to behaviours often seen in FASD, and examines the importance of a true strengths-based approach.
Managing the stresses of caring for someone with FASD is inextricably linked with this understanding. There is also a discussion of the various stresses that caregivers experience and methods to manage them and care for oneself on an ongoing basis.
Dan Dubovsky has presented regionally, nationally and internationally on Fetal Alcohol Spectrum Disorders, focusing especially on interventions for children, adolescents and adults. For this work, his son Bill has been his mentor and best teacher. Dan has provided training for people working in mental health and substance abuse treatment on loss and grieving, psychopharmacology, development, violence in youth, anger management, team building, stress and burnout, transitions and more.
Click here to watch.
For information, help and support in your journey as a caregiver, start with Carers NZ. They have lots of resources on their website, and they're committed to advocating for the rights of caregivers across Aotearoa.
Note: they may not be specifically FASD-informed.
Click here to go to the Carers NZ website.
If you are looking to hire support staff privately or using your IF (Individualised Funding), check out Flying Kites. They can find the right person to fit your whānau's life and needs.
Click here to download the Flying Kites recruitment pānui.
Diagnosis of Fetal Alcohol Spectrum Disorder in New Zealand is well known to be a difficult process – unless there is documented prenatal alcohol exposure and the baby has the 'sentinel facial features' which can be associated with FASD and which make diagnosis relatively straightforward. These features include small palpebral fissure length (the length of the eye opening), smooth philtrum (the groove between the nose and upper lip) and thin upper lip. They only occur if alcohol is consumed early in pregnancy (days 19-21) when the baby's face is forming.
However, sentinel facial features are present in less than 10% of people with FASD – the vast majority of people do not have any outward physical sign, which is why it's known as a 'hidden' disability.
Diagnosis takes a team of multi-disciplinary specialists 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 motu / country. If you opt for a private diagnosis, the costs can be prohibitive (up to $9K). See tab below for our interactive map of assessment services around Aotearoa New Zealand.
FASD-CAN has advocated for more training for professionals since the first FASD Action Plan 2016-2019. This has not yet materialised, although there has been some forward momentum as at 2025.
Many FASD diagnoses come about in teenage years via court orders, if an individual arrives in the Criminal Justice System (CJS) and their lawyer requests it before trial. However, it is widely accepted that if early screening / diagnosis and educational interventions happened much earlier, it would be much less likely that individuals would end up in courts in the first place.
Some people question the point of diagnosis since, unlike other neurological disorders, FASD is not (yet) recognised as a disability in Aotearoa NZ. Even those with diagnosed FASD do not necessarily gain access to Disability Support Services (DSS) funding unless they have a proven Intellectual Disability (ID) – i.e. an IQ of less than 70.
However, recent research in Aotearoa by the University of Auckland's School of Population Health confirms what other international studies have shown: a diagnosis (especially an early one) results in better healthy outcomes for the individual with FASD 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.
Click here for an excellent introduction / overview on Australia's FASD Hub website about the importance of FASD diagnosis.
If you think your child has FASD but has not been diagnosed, it's best to get advice and support early from your doctor – but keep in mind that some GPs are not highly informed about FASD.
Children with FASD can be vastly different from each other. In very young children, it can be hard to detect the early signs unless, as mentioned in the introduction, the child has obvious physical indicators such as sentinel facial features and one or more reported developmental delays.
Some of these issues might not be noticed, or they might not present a problem until they start school and need to concentrate, learn, follow the rules and fit in around others. Or without knowledge of prenatal alcohol exposure, they may be diagnosed as something else (Autism Spectrum Disorder or ADHD) that does not fully explain brain differences.
It is important to consider having your child assessed for FASD if:
The map below of FASD diagnostic services in Aotearoa New Zealand represents information gathered by FASD-CAN in June 2023 on clinicians in Aotearoa who are currently able to provide an FASD assessment and diagnosis.
When you click on a pin, a window will pop up with information on the service available at that location. Alternatively, click on the list of services to the right which will zoom you in to the location.
Note 1: Please ZOOM IN to see all pins in any area – there are several services in both Auckland and Dunedin for example, but they’re very close together.
Note 2: Please click through on the 'Background to diagnosis in Aotearoa' tab below for further important information.
Note 3: Most of the private services will also travel outside of their region to undertake diagnostic services, so do check all the regions if there is not a service identified in your particular area.
Click on the map below to access interactive pins.
Disclaimer
In providing this information, FASD-CAN Inc. is not endorsing the quality of the assessment, diagnostic report, or the other support services offered by these diagnostic service providers.
If you believe there is an error in the information provided or you are aware of other FASD diagnostic services that are not shown on our map, please contact Kim Milne our Principal Advisor asap at: [email protected]
In response to increasing calls for information from our membership, FASD-CAN set out in June 2023 to establish the availability and location of FASD diagnostic services in Aotearoa. There is currently no other publicly available list of clinicians who can diagnose FASD.
We engaged a very experienced paediatric nurse to undertake this research on our behalf.
An early diagnosis is a key factor for good life outcomes for people with FASD so that appropriate supports and interventions can be put in place for families and at school.
Research shows that failure to engage at school makes rangatahi with FASD more likely to end up with negative life outcomes involving substance use, engagement in self-harm and high-risk scenarios, mental health challenges and involvement in youth and criminal justice.
When we refer to FASD diagnostic services we mean that the particular service or provider has had the specialist training to undertake an assessment to identify if a person meets the FASD diagnosis criteria.
An FASD assessment requires a clinician specifically trained in diagnosing FASD. Ideally, this would be done within a multi-disciplinary team including a paediatrician, neuro-psychologist, a speech and language therapist and an occupational therapist. Having a key worker to work with the family/ whānau during and after the process is also highly desirable.
New Zealand currently uses the FASD diagnostic guidelines developed by Canada, however their use is currently under review by the Aotearoa FASD Diagnostic Guidelines project commissioned by Te Whatu Ora, with a report due out in 2024.
In the questionnaire we sent to clinics and services, we included the following questions:
Some clinics and services chose not to share certain information for various reasons. Some failed to respond at all despite multiple attempts to contact them; these included some Te Whatu Ora sites.
We found only 13 services able to offer an FASD assessment and diagnostic service – but two of those (Linda Gow and Koru Specialist Services) had two separate clinics, so there are in fact 15 clinics in Aotearoa. Some services, such as The FASD Centre Aotearoa in Tamaki Makaurau, Koru Specialist Services and others, will also travel to other parts of the country to undertake an assessment.
Ten of the clinics are located in the North Island but there are only five in the South Island. Perhaps most disappointingly, there are only four Te Whatu Ora publicly-funded services, and they are all in the North Island: Northland, Hawke's Bay, Taranaki and Lower Hutt.
This means Te Whatu Ora does NOT offer publicly-funded FASD diagnostic services in Tāmaki Makaurau/Auckland, Bay of Plenty, Lakes District - Taupo/Rotorua, Gisborne, Wairarapa, Whanganui, Nelson/Marlborough, Canterbury, South Canterbury or Southland.
In some large regions such as the Waikato and the South Island, we found no publicly-funded service provider that could provide an FASD assessment.
Most privately funded assessments cost of between $3,000 - $7,000 which is far beyond most whānau can afford for such an essential service. We also understand from the information received that wait times vary and change, but can be up to two years for publicly-funded services.
Unfortunately, the results of this research have highlighted the lack of progress to improve access to FASD assessment and diagnostic services in our country.
In the FASD Action Plan 2016-2019, the Ministry of Health made a commitment to develop and test tools to support the diagnosis of FASD and to investigate ways to upskill existing clinicians and embed the tools into routine practice.
However, in contradiction of the Action Plan, our review indicates a decrease in FASD diagnostic assessment capability across Aotearoa.
FASD-CAN is extremely disappointed to note this lack of implementation of the Action Plan. Despite the acknowledged benefits of diagnosis described in the Action Plan, there has been no strategy developed to carry out this upskilling as at this date (2023).
Funding and a cohesive professional development strategy is needed to provide more professional training to develop diagnostic capability and capacity.
In early 2025, Dr Joanna Chu of the University of Auckland's School of Population Health and her team released a research paper on FASD diagnosis in Aotearoa.
Caregivers’ experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach.
The paper concluded:
"Accessing a diagnosis of FASD in NZ is a challenging experience for caregivers. A FASD diagnosis is critical for adequate support yet caregivers in NZ face barriers in accessing diagnosis due to limited services and trained professionals to provide a diagnosis. After a diagnosis, people with FASD experience ongoing difficulties throughout life. Future efforts regarding diagnosis would benefit from considering using a life-course perspective to provide recommendations for adequate support for people and their families. There is a pressing need to understand the experiences of caregivers accessing a FASD diagnosis and provide support to the whole family."
Click here to read this important Aotearoa-specific research.
Many parents wonder about the value of getting a diagnosis and averse to their child being 'labelled'. However, understanding the cause of challenges can be transformational for both the person with FASD and their whānau.
For tamariki and whānau – it can be helpful to understand that difficulties are brain-based, and not the result of bad parenting or naughtiness. For the person with FASD it can be liberating to find out that their difficulties are brain-based and are not their fault; it helps them make sense of what has happened in their life. It can also contribute to better understanding of the risks of alcohol in pregnancy and help break the intergenerational cycle of FASD.
For schools and communities – diagnosis is helpful in gaining an understanding of how FASD impacts a child’s learning. More specifically, it means educators can design and implement individual educational interventions which can contribute to lifelong positive outcomes; in communities it raises awareness around alcohol in pregnancy and the need for understanding and support for neurodiversity.
When a diagnosis is made, a report is provided to explain the findings and describe the areas of strengths and challenges so caregivers, whānau, educators and others working with the child are aware where the support and scaffolding is required. The explanation to the child can be guided by the clinician – how and when will depend on the developmental level and their current situation.
A diagnosis of Intellectual Disability (ID - an IQ of less than 70) as part of the overall FASD diagnosis will enable a referral to a Needs Assessment Service Co-ordination organisation (NASC), which may be able to provide DSS funding. Currently, people with FASD are unable to access DSS funding unless they have a proven ID.
There are many online discussions of the value of diagnosis from those with lived experience of it. Here are a few we think highlight some of the important issues.
Lived Experiences with FASD: Patima and Rachel
"Patima and her mother, Rachel, share their challenges getting a diagnosis of a fetal alcohol spectrum disorder (FASD) for Patima due to lack of visible symptoms and medical history. They highlight the importance of recognizing FASDs early and adapting supports accordingly. Patima shares her struggle with understanding her behaviors and emotions before being diagnosed, emphasizing the relief and clarity that came with a diagnosis."
Click here to watch on YouTube.
Identity and FASD with Patricia Kaspar
"Patti Kasper engages in a heartfelt panel discussion with returning guests Antonia Rathbun Lindsay and R.J. Formanek. Together, they explore the profound impact of receiving an FASD diagnosis on one's identity and sense of self. Both R.J. and Patti share their personal journeys, reflecting on how their diagnoses have shaped their understanding of disability and self-acceptance. The conversation delves into the nuances of invisible disabilities, the importance of community support, and the journey towards self-advocacy. Listeners will find solace in the shared experiences of navigating societal stigma, the quest for understanding, and the beauty of embracing one's uniqueness. This episode emphasizes the power of storytelling and connection, encouraging others to reflect on their own identities and experiences with FASD."
Click here to watch on YouTube.
This video features Reinier deSmit talking about his own diagnosis.
This video features global FASD advocate Myles Himmelreich.
Getting a diagnosis of Fetal Alcohol Spectrum Disorder is so much easier if prenatal alcohol exposure is already confirmed. This is why it's essential to avoid stigma for mothers – if they feel unsafe around telling assessors there was alcohol involved in their pregnancy, they may be less inclined to let them know, potentially resulting in an incorrect, or no diagnosis.
At FASD-CAN we believe no mother intentionally harms her child and we know that reasons for alcohol exposure can include addiction (this alone can be very complex) and unplanned pregnancy – around 40% of pregnancies in Aotearoa are unplanned. This can mean the mother has been drinking alcohol but is unaware she is pregnant. FASD is everywhere, in all walks of life.
We are 100% committed to non-judgemental support and compassion for all mothers.
There is essential information around avoiding stigma in the internationally-recognised FASD Language Guide and the FASD Common Messaging Guide (both on our Resources page).
There are a number of routes that can be taken towards an FASD diagnosis. It's never easy – but it's worth it.
• Privately
This is often the route caregivers or whānau go down, IF they have the resources, but it can be prohibitively expensive and there may be long waitlists. See our interactive map for services currently available around the country.
• Oranga Tamariki / Permanent Caregiver Support Services (PCSS)
If your child is being fostered by you, and they are under OT care or your child is eligible for PCSS support then they may pay for diagnosis.
• Ministry of Education
The other avenue is through the MoE (your learning support coordinator / SENCO / RTLB should know more about this) which may apply if you and the school are facing severe behavioural issues – this route can also be funded.
• Youth Justice
If a young person with FASD does end up in trouble with the law (see our advice around this here), the courts may send them for funded diagnosis. However early intervention will always have the best outcomes.
Information post-diagnosis
Australia's NOFASD website has a recent (2025) new digital booklet called “Guide for Parents and Caregivers after a FASD Diagnosis". Confirmation of a FASD diagnosis for their child often comes with a tumult of emotions for parents and carers – relief that they have an answer for the challenges their child experiences, grief due to the knowledge that this is a life-long condition, and confusion about how to move forward to achieve the best possible outcomes for their child.
To assist, NOFASD has launched a new booklet which provides practical information to assist parents and carers – with key facts about behaviours, challenges and characteristics that are likely to be encountered across their child’s lifetime as they grow and develop. Download your free e-copy here.
It can be helpful to talk to other parents who have been through the process in your area. To contact others, you could find a kanohi ki te kanohi (face to face) support group in your area – click here for our list of groups around Aotearoa.
We have a monthly ONLINE caregivers support group – click here for more information and to join us.
You can also join our Facebook support groups. However, you will need to join FASD-CAN as a member first to gain access to these groups – click here to join us via a quick and easy form, wait a few days – and click below. Please answer all questions!)
FASD-CAN NZ Professionals & Parents Group | Facebook
FASD-CAN NZ Parent and Carer Support Group | Facebook
You could also direct your rangatahi with FASD (16 and over) to our new 'Individuals' page.
FASD-CAN Individuals Group | Facebook
Below is a list of funding which MAY be available for those who people with FASD and for those who care for them.
Please note that we would like to add to this list as more information becomes available – if you are aware of other possible funding sources, please let us know!
FASD is recognised as a disability by Te Whatu Ora / Health New Zealand and Manatū Haouora/ the Ministry of Health, but is not funded as a disability – unless the individual has an IQ of 70 or lower (i.e. an Intellectual Disability or ID). Less than 20% of those with FASD have an ID and a formal assessment is required to find out whether this is the case.
If you have had a diagnosis for your child which proves they have an intellectual disability, you may be able to apply for DSS.
Click here for more information about DSS. They may recommend you talk to a Needs Assessment and Service Coordinator (NASC) to begin the process.
Find your local NASC on the Needs Assessment and Service Co-ordination Association website.
IF you find that your child is eligible for Disability Support Services, then you may also be able to claim other benefits such as Carer Support (respite care for you) or Individualised Funding (IF) - person-directed funding from Whaikaha which gives disabled people and their whānau more choice in how they are supported to live their lives fully.
This is a weekly payment from Work and Income NZ which helps carers supporting a child or young person whose parents can't care for them because of a family breakdown.
Find out more here.
Orphan's Benefit is a weekly payment which helps carers supporting a child or young person whose parents have died or can't be found, or can't look after them because they have a serious long-term health condition or incapacity.
Find out more here.
If you're caring for someone else's child and need help with pre-school or school-related costs at the beginning of the year, you may be able to get the School and Year Start-up Payment. It's a one-off payment of between $400-$550 depending on the age of the child. You must apply between mid-January and the end of February to receive this. Apply to WINZ.
Find out more here.
A weekly payment which may be available to help if you are caring full-time for someone.
You can apply through Work and Income NZ.
Find out more here.
This is a fortnightly payment made to the main carer of a child or young person under 18 with a serious disability or health condition.
This payment is for the extra care and attention that you need to give to a disabled child. It is a set amount and doesn't depend on your income, assets or costs.
Parents/caregivers may be eligible if: 1) they are the main carer of the young person, 2) they are a New Zealand citizen or permanent resident, 3) the young person has been assessed as needing constant care and attention for at least 12 months because of a serious disability.
Find out more here.
Whether you can get childcare subsidy and/or OSCAR subsidy depends on how much you and your partner earn. The amount you can earn and still receive childcare subsidy and OSCAR subsidy increased fairly substantially on 1 April 2023 so it may be worth checking if you are now able to get it.
The income thresholds and rates of subsidy are available here for OSCAR subsidy and here for childcare subsidy.
Childcare Subsidy
Childcare Subsidy is a payment that helps families with the cost of pre-school childcare.
If a child receives the Child Disability Allowance (CDA), you are entitled to childcare subsidy up to the age of 6, rather than 5.
Further information about childcare subsidy is available via Work and Income NZ here.
OSCAR subsidy
Out of School Care and Recreation (OSCAR) Subsidy is a payment which helps families with the costs of before and after school care, and holiday programmes.
To get the OSCAR Subsidy you must be the main carer of a child or young person who is under 14 years old (or under 18 years old if the main carer gets a Child Disability Allowance for them), and to be unable to take care of the child or young person because of your own work, study, illness or disability.
Further information about the OSCAR subsidy is available via Work and Income NZ here.
Weekly payment for people with regular, ongoing costs because of a disability (e.g., visits to the doctor, medicines, extra clothing or travel).
Young people (from 16 years) are eligible if they have a disability that is likely to last at least six months; have regular, ongoing costs due to the disability that another agency does not fully cover; are a New Zealand citizen or permanent resident; normally live in New Zealand and intend to stay here. Young people with FASD qualify if they meet criteria.
Young people can apply through Work and Income.
Find out more here.
A weekly payment which may be available to help if you have a health condition, injury, or disability.
You can apply through Work and Income.
Find out more here.
We have a handy flow chart for pathways to funding at school here.
Funded by the Ministries of Health and Education, and Oranga Tamariki.
HCN works with children and young people who have high and complex needs. They work with multiple government and non-government agencies to help families find positive solutions. The service is intensive and lasts between six to 24 months.
Young people may be eligible if they have high and complex needs across at least two sectors (education, health, and care and protection). Young people with suspected FASD qualify if they meet criteria. Two required agencies have to put in a joint referral.
Find out more here.
This is educational funding which may provide support for students with the highest ongoing levels of need for specialist support. The scheme enables them to attend school and participate alongside other students.
More info is available here.
Funded by the Ministry of Education, IWS is a support programme for young people aged 5–14 years who have behaviour, social and learning needs that are highly complex and challenging, and who require support at school, at home and in the community.
IWS takes a bespoke, comprehensive, holistic, youth- and family-driven approach. It has two key criteria: 1) there has to be a need in the school, home, and community, and 2) every other intervention has been used or attempted and was unable to meet needs.
A panel reviews all referrals and decides if the young person is accepted. Applications are made by Ministry of Education Learning Support staff, RTLB and day specialist schools, or fund-holder (ORS) schools.
More info is available here.
Funded by the NZ Police. The purpose of the flexi fund is to enhance tamariki / rangatahi wellbeing following family violence ‘through the purchase of one-off or timebound goods or services.’ This fund can be applied for on behalf of young people up to the age of 18.
More about this fund here.
If you have tamariki / children who with FASD and they are at school, then as caregivers, parents, grandparents and whānau, you will need to advocate strongly for them to enable them to live their best lives.
It can be helpful and empowering to be FASD-informed for this reason: you know your child best – what works and doesn't work for them – and if you can have informed discussions with staff, it's likely to have better outcomes.
There is no doubt that if tamariki with FASD can see the school years through there will be better life outcomes generally, so it's extremely important to begin interventions as early as possible.
If tamariki or rangatahi have suspected or diagnosed FASD, the school must be informed, and the first contact is likely to be your child's school SENCO – Special Education Needs Coordinator. (You'll come across lots of acronyms in education – there's a quick guide in the tab below.)
An essential and excellent resource is the Te Kete Ipurangi inclusive education page. Here you'll find everything you need to know about what's available for special needs students at every level of education, including funding.
PLEASE NOTE: for kaiako / teachers, SENCOs and RTLBS we have an Information for Educators page which is helpful for teachers to begin an understanding of how your FASD ākonga / student may behave and learn differently. Do pass this link on to your child's teacher so you can work together and be on the same page – the best outcomes happen when whānau and teachers have an open pathway to communication (although sadly this may not always be the case).
IWS, ORS, SENCOs and more - in getting funding and help in education, you may feel that your life begins to revolve around acronyms! Here's a FASD basic acronym dictionary for educational requirements.
At school, you and your FASD child will very likely need to develop a relationship with the Special Educational Needs Coordinator (SENCO for short) is a teacher who is responsible for special educational needs in school. Most schools in NZ are obliged to employ a SENCO, whose role is to ensure all students with learning disabilities are well equipped to obtain the right help and support they need at school.
Learning Support Coordinator; Resource Teacher of Learning and Behaviour; Resource Teacher Literacy.
IWS stands for Intensive Wraparound Service. The IWS supports tamariki who have behaviour, social and/or learning needs with a plan to meet each child’s needs. Their needs are highly complex and challenging and they require support at school, at home and in the community. The IWS plans are created to support tamariki at school, at home and in the community. Plans are designed to have a range of activities and interventions, including help from professionals, to help tamariki and whānau develop new skills. Click here for further information from the Ministry of Education.
The Ongoing Resourcing Scheme is for students with high or very high ongoing needs for learning support. For more details from the Ministry of Education, click here.
High and Complex Needs.
In-class Support Funding; Interim Response Funding.
Here's a handy graphic representation of where to start and who to talk to around getting the right help for your tamariki at school.
Click the image to download.
It can be very handy for teachers to have a printout for their wall as a first response resource for a quick reminder of strategy when dealing with students with FASD. This double-sided sheet can be downloaded and printed. Click here or on the pic to download.
It's often very helpful for teachers to have a one-page information sheet that they can keep on file to refer to which gives helpful tips about your child's strengths, challenges, tips on strategies and ways of communicating.
To this end, we've created a Word document that you can download and fill in, then print it out for your tamariki's teacher. We've also included an example sheet that's filled in.
Click here for the sample pdf (see below), and here for your blank Word document to fill in.
Whānau and caregivers in Aotearoa have little option but to be prepared to advocate tirelessly for their child at school – the great benefits of engaging closely with teachers and other educational professionals are well-documented and sadly there are still few clear pathways in our schools that take FASD into account.
From our own experiences, it's enormously important to take time to set up your tamariki at every level of school to enable them to avoid upsets and conflict, achieve their potential and become a valuable member of society.
If this is accomplished at a young age, the better the outcome is for them getting to high school and staying there – but if behavioural problems in early teenage years lead to exclusion from school there's a high chance that things may track badly for your rangatahi in their late teens.
Having said that, once everyone enabled to communicate and work positively together to identify strengths, create positive environments and healthy expectations, amazing successes can occur!
The best resource we have come across in terms of helping whanau and caregivers in Aotearoa to advocate for their FASD children comes from Western Australia Development Disability Council.
It covers issues such as:
Download 'Learning How to Advocate for your Child at School' here.
There is growing awareness of inclusive education both globally and within Aotearoa, but the various stakeholders involved find it hard to agree on. Here we give some background information about the movement – with our own interpretation of it at the end.
In 2008 New Zealand signed the United Nation’s Convention on the Rights of Persons with Disabilities (UNCRPD). Article 24 addressed the right of disabled people to an education.
In 2016 an internationally accepted definition of inclusive education was agreed in the United Nations. It is referred to as 'General Comment 4', and it was adopted to become part of Article 24 within the UNCRPD.
General Comment 4 states:
“The right to inclusive education encompasses a transformation in culture, policy and practice in all formal and informal educational environments to accommodate the differing requirements and identities of individual students, together with a commitment to remove the barriers that impede that possibility...
"Exclusion occurs when students are directly or indirectly prevented from or denied access to education in any form.
"Segregation occurs when the education of students with disabilities is provided in separate environments designed or used to respond to a particular impairment or to various impairments, in isolation from students without disabilities.
"Integration is the process of placing persons with disabilities in existing mainstream educational institutions with the understanding that they can adjust to the standardised requirements of such institutions.
"Inclusion involves a process of systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education to overcome barriers with a vision serving to provide all students of the relevant age range with an equitable and participatory learning experience and the environment that best corresponds to their requirements and preferences. Placing students with disabilities within mainstream classes without accompanying structural changes to, for example, organisation, curriculum and teaching and learning strategies, does not constitute inclusion. Furthermore, integration does not automatically guarantee the transition from segregation to inclusion.”
As at July 2023, the Ministry of Education’s portal Te Kete Ipurangi website states:
“Inclusive education is where all children and young people are engaged and achieve through being present, participating, learning and belonging…
"Inclusive education means that all learners are welcomed by their local early learning service and school, and are supported to play, learn, contribute and participate in all aspects of life at the school or service.
"It is underpinned by the belief that every learner has the potential to make a valuable contribution to the wellbeing of their family, whānau, community and to Aotearoa New Zealand as a whole. It asserts that our diversity is a strength.
"Inclusive education is also about how we develop and design our learning spaces and activities so that all learners are affirmed in their identity and can learn and participate together. It means deliberately identifying and removing barriers to learning and wellbeing.”
Schools in Aotearoa New Zealand are legally required to be inclusive under the Education and Training Act 2020. The right to an inclusive education is also reinforced by the New Zealand Disability Strategy.
The New Zealand Disability Action Plan 2019-2023 sets out priorities to advance the implementation of the UNCRPD and the New Zealand Disability Strategy 2016-2026. Outcome One of the Plan relates to education – click here to read it.
At the 2022 review of the New Zealand government’s compliance with its responsibilities under the UNCRPD, the Committee recommended (in clauses 40, 48 and 54 of their report):
Further details of the recommendations can be found here.
As New Zealand is a signatory to various international conventions that address inclusive education we are bound to the international definition of inclusive education reached in 2016. However, it is clear from reviewing information around the world, there are different interpretations of this definition that meet each country’s individual situations and contexts.
The inclusive education movement in Aotearoa New Zealand has been fighting long and hard for change in the education system, and true inclusion of disabled people in mainstream education. They want to see all residential special schools and special schools closed as soon as possible. They do not accept that these schools should remain an option available to disabled people and their families.
The movement argues these services and supports should be available in the local community. It also advocates for the prompt roll out of the EGL approach in education and argues strongly that inclusion in school is a human right and that New Zealand is currently breaching its international obligations.
FASD-CAN supports the inclusive education movement and the roll out of EGL to our neurodiverse ākonga. However many of our members, particularly caregiver members, want to retain specialist schools (both day and residential) as an education option available to them until the mainstream education system is appropriately set-up and funded to meet the complex needs of our FASD learners.
This is likely to take many years to achieve as it will require not only fundamental transformation and change to long-standing education systems, but also a deep shift in mindsets and belief systems in our communities about disabilities – neurodisabilities in particular.
FASD-CAN believes the definition of inclusive education in Aotearoa New Zealand must also be interpreted within the context of the EGL principles which the government has committed to implementing across its systems and processes.
FASD-CAN’s interpretation of inclusive education has an emphasis on self-determination (choice) and being person-centred as set in the EGL principles, but also recognising the role of whānau in decision-making, as is fundamental in the whānau ora principles.
“Inclusive education is where every ākonga / student is actively supported to reach their potential in partnership with family, whānau and kura / schools, where they have real choice and access to an equitable and mana-enhancing learning experience, in a learning environment that best meets their unique strengths, interests, social, emotional and learning needs.”
Education for tamariki with FASD has many obstacles which can often cause problems in the mainstream school environment.
Before beginning their educational journey, children with FASD may already be struggling with processing information, interpreting body language of others and following instructions. Many other skills are not developing in the same way as their peers, so fitting in at school can be a challenge and school refusal or challenging behaviour may be the result.
Home-schooling, or home education as it's most often now referred to as, can be a viable option for some families. While it does require commitment and has challenges, for those caring for a tamariki with FASD who is struggling in a mainstream school environment, it may be an opportunity to provide learning opportunities for your child in a quiet, calm, home environment, with a learning plan tailored to their specific needs. Some families find home education significantly reduces the anxiety and distress that can accompany school attendance and can lead to better outcomes.
There's an excellent page to consult about all aspects of home education here.
Children learn best when they are interested in a subject and the flexibility of home education allows this to happen regularly.
One of the biggest advantages to home schooling is the flexibility. You can tailor learning programs to suit you, your child and your lifestyle. This also means everyone ends up doing things a little differently.
Yes, you do. In New Zealand children between 6 – 16 years of age must attend a registered school, or have an exemption from school attendance. This exemption is granted by your local office of the Ministry of Education.
You’ll need to convince the Ministry officer that you are able to educate your child 'as regularly and as well' as a registered school. However you are not obliged to follow the national curriculum or create a mini-school at home.
The Ministry of Education, in considering your application, will want to know:
Contact your local Ministry of Education office for an exemption application form.
The Ministry of Education provides a small amount of assistance in the form of an annual ‘supervisory allowance'. This consists of $743 for the first child, $632 for the second, $521 for the third, and $372 for each one after that.
This is paid retrospectively, in two instalments each year, June and December.
There are a number of Homeschooling websites to consult in New Zealand – click here for a good place to start.
Many thanks to Kiwifamilies for some of the information on this page.
This is sadly an all-too-common scenario – and as with most punishments for ākonga / students with FASD, it doesn't work and merely serves to isolate and traumatise them further. Sometimes however, a school has no options. It's a big problem with many facets, but we have some practical advice, a webinar and some personal stories about school exclusion on our Resources page, here.
A company called Youthlaw has been providing free legal help for nearly 30 years to tamariki under the age of 25. They cover various issues including educational funding in NZ. Youthlaw staff solicitors are unique specialist practitioners – they are some of the only lawyers practising in the field of education law. They have the ability to assist with appeals of high needs special needs funding under Section 10 of the Education Act.
Click here for more info, call 0800 UTHLAW (0800 884 529) or email them at [email protected]. See below for flyer.
As with any child, it seems that just when you've got into a routine that's working, it's time to take the next step - and everything changes. For ākonga / students with FASD, coping with these changes can be enormous and overwhelming and for parents – well, the same usually applies!
Here are some links to explore to help with transitions throughout school.
• Care Matters website: successful transitions throughout school years
• Ministry of Education: lots of info here (aimed at kiako/teachers but good for parents, too) on the MoE's National Transition Guidelines
For teens needing support after school to move into tertiary education or work, these sites will be helpful.
• Flying Kites have individualised programme to support planning after school – click here for flyer.
• SpectrumCare have programmes to help transition from school into work (along with many other services)
• CCS Disability Action have a helpful downloadable brochure on their website for transitioning from school to work
• Workbridge provide help nationally for your rangatahi or adult to find and keep a job.
All universities and tertiary education providers have disability services to look after students who may need learning support.
Student Disability Services - The University of Auckland
Disability support services | Manukau Institute of Technology
Disability Support Services - Student Support - AUT
Disability Support Services | Study Support | Unitec
Disability Services – Victoria University of Wellington
Disability Services – University of Canterbury
Disability information and support – University of Otago
Disability services – Massey University
To get an idea on how FASD is currently handled within the education system in Aotearoa, we asked some local experts in FASD education one question each to establish the basics. Click on each name below to go to their opinion.
Claire Edwards - What are the most common problems for students with FASD at school, and how are these needs not met?
Tracey Jongens - What needs to happen ideally in schools for students with FASD and are there any signs of hope and change?
Vanna Blucher - From an educator’s perspective, how can teachers be better supported to allow students with FASD to achieve their potential?
The most common problem facing our tamariki/rangatahi within the education system reflects a much wider problem facing NZ: the lack of recognition of FASD as a disability and a general lack of awareness that FASD is a permanent, lifelong brain injury. This means that our tamariki often struggle to access support and funding as often they do not fit criteria and are not considered ‘bad enough’. Lack of funding results in a lack of support within the classroom (for both student and teacher), a place where our tamariki often struggle to cope with the demands and expectations placed upon them. Often funding comes as the ambulance at the bottom of the cliff when behaviours have escalated and come to a critical point.
There appears to be a distinct lack of training within teacher training institutes around FASD, so teachers are often unaware and not equipped with the skills to deal with the complexities our tamariki present. There is also little support for teachers who are often already dealing with large class numbers and other children with complex needs and neurodiversities.
This and a focus within the classroom on behaviourist techniques such as rewards and consequences (which do not suit children with FASD), often end in behaviours escalating and tamariki/rangatahi being labelled as ‘naughty’ and having behavioural problems.
Within early years and at primary school, our tamariki with FASD often seem to do quite well, possibly due to the more holistic emphasis on learning, but as they hit intermediate/high school there is a huge mismatch in terms of environment and expectations. The fact that they are expected to move from one class to another, one teacher to another and independently follow a timetable does not work well for our learners! If you add sensory processing and memory issues into the mix, it's easy to see how overwhelming this environment would be. Inabilities to regulate emotions without support could end in rangatahi being unable to cope and ending up in trouble.
Then there is the complexity of FASD itself and the fact that it is often ‘invisible’. There’s a saying: ‘if you’ve met one person with FASD, you’ve met one person with FASD!” Levels of skills within FASD can be so different and students can often present as coping on a surface level, but from one day to another they appear to be unable to complete tasks they had previously done.
Without educator training and understanding, it tends to paint a picture of a wilful, manipulative child, rather than a misunderstood one with a brain injury. Often in schools there is a disconnect between the school and the real experts on the child/tamaiti – the whānau! Instead of utilising the knowledge and skills that the whānau have, they can be blamed for behaviours and viewed as interfering parents.
Final thought: we must shift the goals for our learners with FASD from independence to interdependence!
Tracey is a founding member of FASD-CAN Inc. She has spent her life working in the education sector, including primary teaching, teacher training, working as a Resource Teacher of Learning and Behaviour (RTLB), and is currently Head of Department, supporting students with learning needs and leading the development of a programme to support students with ORS at Te Aratai College in Christchurch. Tracey has spent the last 10 years raising awareness around FASD within the education sector throughout NZ and Australia.
Whānaungatanga / relationship is the key to understanding young people with FASD. FASD is an individualised diagnosis. This means that each young person with FASD will have their own areas of strength, their own interests and their own challenges, and no two people with FASD are the same.
It is imperative that each young person is understood as the person they are, that their strengths are recognised and developed and that their challenges are supported. Whānau are the experts on their young people and it is vital that whānau, the young person and schools work together. Whānaungatanga is increasingly being recognised and embodied in practice by schools throughout Aotearoa / NZ.
A young person with FASD must experience success. This success may be possible with support or with scaffolds being provided. Regardless, success is still success. When a young person experiences success it is important that schools and teachers recognise that the success is possible due to the level of support given. It's vital that the support remains in place over time and is developed and built on.
When a teacher takes the time to connect with whānau, to get to know the young person in their care, to find the strengths in that young person, to reflect as the professional when things become challenging and to try a different way, then the young person will experience success.
Schools are providing more flexibility for their learners, recognising the need for inclusive practices such as Universal Design for Learning (UDL), and providing a range of learning and assessment opportunities for tamariki and rangatahi. The development of individualised learning pathways is providing opportunities for learners to learn in the ways that they can enjoy and have success in.
Alongside this is the need to recognise that young people with FASD need ‘time out’ or opportunities to calm. Classrooms can be over-stimulating. Young people with FASD need to focus so much more to self-regulate. It is vital that quiet spaces, ‘brain breaks’, physical activities and sensory supports are available and easily accessed.
As the saying goes ‘Rome wasn't built in a day’ – however, there's a lot to be thankful for in the development of education at this time. Schools and teachers are increasingly aware of the importance of wellbeing. Teachers are encouraged to be reflective practitioners. Whānaungatanga is developing in importance.
Policy from the Ministry of Education now includes FASD as part of the strategies and practice around supporting neurodiversity in schools. The Inclusive TKI website, an online education tool, has a well-researched guide on FASD with excellent strategies provided for teachers.
Vanna is SENCo at Hobsonville Point Secondary School, a Modern Learning Environment in Tāmaki Makaurau. She started her career in primary schools and worked in a range of roles including teacher, SENCo, literacy specialist, and acting deputy principal. She made the jump to high school teaching six years ago when she started at Hobsonville Point and she hasn’t looked back since. Vanna has a particular interest in celebrating the diversity of our learners and ensuring all students can feel success while still engaged in their passions.
Follow Vanna @vannablucher5
As for all neurodiverse learners, kaiako need to take the time to learn what each individual student needs to be successful. It is about knowing your learner and figuring out from a strengths-based perspective what is going to work for them in a classroom, and what success looks like to them.
Students with FASD need both a global and a personal understanding of what works. Most of the time, this understanding comes from trial and error and figuring out what doesn’t work. During this process it’s important to remain empathetic and communicate often with all stakeholders to prevent learning from feeling punitive or deficit-focused.
In our MLE environment we are able to use different spaces within our learning areas to help support overwhelm, or any other sensory issues that may present in a school day. This is reliant on staff being aware of the signs, and having the capability to make the needed shifts in behaviour or environment before anxiety or overwhelm presents. The student needs to be able to leave and reintegrate into the classroom without unnecessary attention.
A specific learning plan will help with guiding the learning journey, while keeping communication open and transparent between everyone working with the student. Whānau are key to this process and the meetings that take place need to be structured in such a way that all parties understand where things are at and what the next steps are.
For a learner with FASD, ensuring goals are achievable, sustainable and personalised will help support any strengths-based programme with support of your RTLB and any other support agencies.
I have made our staff a website which includes a number of helpful resources that can be looked at and used to help build their own understanding and capacity to support a wide range of learning needs, including FASD. By providing resources and reading materials for staff, classroom practice can keep growing and improving so that our learners are being catered for as best we can.
It's tricky enough for neurotypical teens when it's time to leave secondary school and make the move into the adult world – but for those with FASD it can be much harder.
For parents, caregivers and whānau, there's a lot to think about, too: how can you find information about supporting your rangatahi / young adult into tertiary education and what kind would be best; could they manage a job and is there financial support available while they're looking – and what about housing?
Because we are asked about this a lot, we put a team of lived experienced professionals together to find answers to these questions and more. The result is a dedicated section on our website called 'Teens and Beyond' – thanks to funding from Whaikaha / the Ministry of Disabled People.
We'd also like to acknowledge NoFASD Australia for permission to adapt their publication 'Now that you are 18: A guide for young people with FASD transitioning into adulthood'. It was an enormous help to us in structuring this resource. Ngā mihi nui ki NoFASD Australia!
Kia ora aawa atu / thank you very much!
We intend to make this available also as downloadable booklet, and hopefully an Easy-Read document, too (funding dependent).
Please click here to go to our new Teens and Beyond section.
Fetal Alcohol Spectrum Disorder is often thought of as mostly a behavioural disorder, but at least a third of those with FASD will have physiological challenges too, including impairments to motor skills. A motor skill assessment should be completed for all tamariki and young people being assessed for FASD.
Occupational Therapists (OTs) support people to develop their fine and gross motor skills, cognitive skills and social skills. OTs can help identify and develop the strategies, supports and structures to help a person maintain health and safety in the community. Enabling a person with FASD in this way can improve their independent living skills and increase success in their daily life.
OTs can also provide strategies and recommendations to assist with sensory and other processing issues. Children and rangatahi can learn to recognise their own unique sensory challenges and how to regulate them to help them manage stress, enhance their wellbeing and increase participation at school and at home.
If you are looking for an OT, we would recommend that you enquire whether they are FASD-informed.
• This 13-minute American video presented by Marianne Gernetzke, a certified OT, gives basic information on how occupational therapy can help people with FASD. Click here to watch.
• Occupational Therapy New Zealand
Find an OT on this site anywhere in Aoteraoa.
Search for OTs around NZ
• The Occupational Therapy Board of NZ
Has more info and a list of all OTs who are registered in Aotearoa.
Some rangatahi may struggle with mental health issues which need professional help. Following are some of the more common concerns that young people may experience and how you can support them.
Most people, at some point in their life, struggle with low self-esteem. This may be especially true for a young person with a FASD diagnosis because they may feel different, have trouble socially or struggle in school. As a parent, there are things you can do to try and help your young person feel good about themselves, such as:
There are many reasons why young adults with FASD may experiment with drugs or alcohol, such as low self-esteem, peer influence, a need to fit in or as a way to cope with their feelings. Following is a list of strategies that may help you to support your teen.
Self-harming behaviours may take many forms, such as cutting, scratching, not eating, vomiting after eating (bulimia), not allowing wounds to heal, burning or hair pulling. It is important to know that self-harming is most often used as a way of coping.
Only a small number (less than of 10%) of babies are born with what are known as the FASD 'sentinel features'. All three features present will be indicate prenatal alcohol exposure, but it's important to note that the presence of absence of these features do not indicate the severity or mildness of the disorder.
Facial features may include:
• Small eyes – the width of the eyes from inner to outer corner may be shorter than average.
• Thin upper lip – the upper lip may be unusually thin compared to other babies.
• Smooth or flat philtrum – the smooth or flat ridge between the nose and upper lip is a common feature.
Other potential birth / early indications
• Low birth weight– babies with FASD may be born with a lower-than-average birth weight.
• Small head size (microcephaly) – the head circumference may be smaller than normal.
• Slower physical growth – after birth, they may grow more slowly than other infants.
• Alcohol withdrawal symptoms – newborns with FASD may experience withdrawal symptoms such as jitteriness, high-pitched crying, and sleep difficulties.
Long-term physical challenges
Individuals with FASD are many times more likely to be diagnosed with physical health conditions than the general population. Common comorbidities can include:
• Motor skill challenges – coordination
• Cardiac / heart defects
• Joint deformaties or abnormalities
• Hearing and vision issues
• Dental issues such as tooth decay and malformation may require specialized interventions and support.
• Bowel and bladder functionality
• Congenital and chromosomal conditions
• Inflammation – early onset problems with arthritis and other inflammatory diseases.
Understanding the complexities of comorbidities in FASD is crucial because it allows healthcare professionals and support systems to provide comprehensive and integrated care to individuals with FASD, addressing both their FASD-related needs and their co-occurring health conditions. By recognising and addressing these comorbidities, professionals can develop tailored interventions and treatment plans that take into account the unique challenges and strengths of each individual.
Getting both a physical and mental health overview also helps to validate the experiences of individuals and their families. It reduces stigma and misconceptions by emphasising that the challenges faced by individuals with FASD are not a result of personal shortcomings but rather a complex interplay of prenatal alcohol exposure and associated comorbid conditions. This understanding promotes empathy, support and a more inclusive society that recognises the multifaceted nature of FASD and its impact on overall health.
FASD, MENTAL HEALTH, AND COMORBIDITIES, July 27, 2023 – Edmonton and Area Fetal Alcohol Network website.
• Beyond the Brain: The Physical Health and Whole-Body Impact of Fetal Alcohol Spectrum Disorders
An excellent paper was released in mid-June 2025 by the University of Queensland with new and updated evidence for the impact of PAE on different organs, metabolic functions and other health effects which are co-morbid with FASD.
Conclusion: A growing body of evidence suggests that individuals with PAE/FASD may experience comorbidities relating to metabolism; body composition; cardio-renal, immune, and/or reproductive health; as well as hearing, vision, and sleep difficulties. These findings support the concept of FASD as a whole-body diagnosis, emphasising the importance of a holistic approach that supports the overall health and well-being of those with PAE. There are opportunities for future clinical research to focus on further understanding these physical health challenges, how they evolve, and how effective intervention approaches could improve outcomes for individuals with PAE/FASD.
Click here to read the full review.
We found the above chart helpful – click on it, or click here to access a full-sized, downloadable version. Reproduced with thanks to the authors of this paper.
• The 'Lay of the Land' survey
This important research paper, developed by International Adult Leadership Collaboration (ALC) FASD Changemakers (Myles Himmelreich, CJ Lutke and Emily Travis-Hargrove, three adults with FASD), reports the results of a community-based health survey which interviewed over 540 people with FASD. The findings dramatically demonstrated that Fetal Alcohol Spectrum Disorder (FASD) is indeed a 'whole body' diagnosis.
Individuals with FASD have higher frequencies of a wide range of health conditions and develop these earlier than individuals in the general population. An understanding of these results will ensure timely and appropriate diagnosis and treatment for individuals with FASD. Click here to find out more.
This report is currently only available as a chapter in a book – The Routledge Handbook of Social Work and Addictive Behaviours. Note that this book is available at the IHC library in Wellington (they can post it out if you order online).
Please note: FASD-CAN is including information on the subject of sexuality which some may feel is sensitive and emotive, and some of the views expressed in links here are not necessarily endorsed by us. However, we do this because people with FASD struggle in this area, and if the subject is ignored it can become very problematic.
This can be a tricky and emotive subject, but it's an extremely important one. It's very common for those affected by FASD to experience some complex issues around emerging sexuality which can become serious.
As the NOFASD (Australian) website says, "Due to individual differences in learning and cognition it can take longer for people with FASD to understand norms and boundaries around sexuality, and people with FASD are highly represented as both victims and perpetrators of inappropriate sexual behaviours."
Adolescents and teens with FASD are usually surrounded by their peers talking about sex, or beginning relationships – it can be a minefield of confusing messages which must be repeatedly clarified for tamariki and rangatahi with FASD.
In addition, any young person with FASD who has a smartphone can access the internet where they will find, or be shown, pornography. This is a big subject and something that all parents must be be ready for. See tab below for helpful information on this topic.
Because young people with FASD want to be included, they can also be a target for sexual advances by others – or can become involved in coercion themselves.
Don't wait till the teenage years to have conversations about sexuality: a recent Canadian study found that the average age for emerging Inappropriate Sexual Behaviour (ISB – see below) is ten years old.
So it's essential for children and young people with FASD to receive early, clear information around what is and what is not appropriate, alongside supervision where necessary. Chats about sexuality should be regularly revisited and ideas repeated as necessary.
Schools in Aotearoa NZ present Relationships and Sexuality Education (RSE) for adolescents and teens in the last year of primary school and in secondary school. Ministry of Education has online information explaining this area of the curriculum. Click below to find out more.
This area of learning can be confusing to those with FASD – but thankfully, Sexual Wellbeing Aotearoa (formerly Family Planning NZ) have created an excellent resource to use alongside the curriculum for those teaching or caring for intermediate and secondary students with learning disabilities, including FASD. Parents and whānau may also find this resource helpful.
The Colours of Sexuality brochure provides a framework for educators and caregivers to use alongside the RSE curriculum in schools for young people who may need extra support in understanding some of the concepts.
Click here to read more about this and other resources for parents and whānau to help with talking about sexuality with your tamariki or rangatahi.
Here are some great resources to help caregivers talk to their adolescent or teen with FASD about puberty and sexuality.
• Planet Puberty is an Australian guide for parents of adolescents and teens with an intellectual disability. It's an online booklet designed to help you to plan how you’re going to support your child as they transition from childhood into adulthood. The more prepared you are, the more confident you will feel in supporting your child through puberty.
Click here to read and download the Planet Puberty guide.
• Autism NZ has an excellent online article about what's appropriate and inappropriate from a sexuality angle for young people, including where it's ok to take your clothes off; navigating sexuality in their peers; masturbation and sexual abuse. This article also has ideas for workshopping discussion points with your child.
• The IHC Library has a wealth of helpful books about emerging sexuality for both caregivers/parents and for adolescents/teens themselves. The library is based in Wellington, but can post books directly to you for a small fee.
Click here for a list of books on this theme.
The IHC Library also has a couple of videos it commissioned about puberty (one for girls and one for boys) which you can watch with your child.
Billy Grows Up: This film uses a family situation to help young men and boys understand what is happening to them during the puberty transition process. It provides basic information about the physical changes involved in this process, as well as discussion about hygiene, emotional issues and public and private behaviour associated with discovering your own body. The family consists of Billy, who is 11, his Mum and Dad and brother Max. In the film we see Billy being helped by Dad initially who then gets Mum and Max to join in.
Click here to watch 'Billy Grows Up'.
Tara Grows Up: This short film is a guide about puberty for young girls with an intellectual disability, as a preparation for their first period. In the film the family, helps Tara, who is 11, understand what she can expect, why her life will develop this way and how she can manage her period. Good hygiene, the normality of having periods and the need for privacy are all stressed, with a repeat towards the end using Tara’s doll as a prop. The film starts with her Mum talking to Tara, who then involves the rest of the family. Tara’s older sister has a key part to play, explaining and demonstrating all the things that Tara needs to know. It is suggested that the film should be watched first by the parents as well as the caregiver if involved, so that they can make decisions as to how to best use it.
Click here to watch 'Tara Grows Up'.
We're very grateful to the IHC Library to be able to share these resources.
ISB can include inappropriate touching, promiscuous or dangerous sexual behaviour, sexual remarks, lack of physical boundary space, disrespect of privacy, masturbation in inappropriate settings, exposing ones’ self, voyeurism, and obscene or offensive language. Many of these problems can be mitigated by open discussion and clear boundaries which must be constantly reinforced as those with FASD transition into adulthood.
CanFASD, the Canadian National FASD research agency, produced an issue paper in 2018 on ISB in those with FASD. The purpose of this was "to highlight an overview of the current existing research conducted in this area and offer implications for individuals, families, caregivers, and policy makers." It is important reading – here are a few samples of their finding.
• Researchers estimated that ISBs are displayed by 45%-52% of adults with FASD. Rates of ISB associated with FASD appear to increase over the lifespan, with studies demonstrating the rates of ISB in children (ages 6-11) at 39%, 42% in adolescence (ages 12-20), and up to of 65% in adult males. The average age when ISB initially present is approximately 10 years old, although the age of emergence can vary.
• Individuals with developmental disabilities should receive sexual health education which is specifically informed by the person’s needs and disability.
• It is essential that FASD-informed approaches towards adopting healthy sexuality and properly addressing ISB are implemented to help individuals with FASD as part of holistic support. Individuals with FASD are sexual beings like everyone else and need to understand their sexuality and sexual needs in a healthy way.
The research concluded:
"ISB is frequently an adverse life outcome for individuals with FASD ... there is an obvious need for future research to address the significant gaps in this area. Future research should focus on investigations that better outline the cause of ISB in this population, as well as the assessment of FASD and ISB. Researchers also need to examine sex offender treatment programs for individuals with FASD and improve understanding about FASD amongst professionals addressing ISB, specifically those within legal settings contending with those experiencing trouble with the law as a result of ISB."
Click here to download and read this important paper.
In this podcast from the FASD Success Show, Nate Sheets interviews Pascal Gagné, a Canadian expert who is the FASD Team Lead at Health Nexus in Ontario, Canada. (1 hour). Pascal has taught sexuality in various scenarios and this episode, though potentially triggering, confronts and discusses these issues for parents and caregivers of young people with FASD with practical and sensible advice.
Click here to listen.
Pornography can be a very uncomfortable topic for adults to talk about with young people who have FASD or another neurodisability. It is often completely avoided, or else discussed in a way that may be unintentionally shaming.
However, sex is a basic biological function, and regardless of ability or disability most people experience sexual desires, attractions and feelings. Porn can actually be a helpful tool for a person who may not have other avenues for sexual experience – as long as it is ethical, shows consent and doesn’t get in the way of other life functions or activities.
The simple fact is that young people will always have unsupervised access to screens – if not theirs, then someone else's. This means they can and will almost certainly access porn at some point and when viewed through a lens of neurodisability, it can be confusing and possibly dangerous if they are unprepared and think certain kinds of porn is ok or normal.
Here are a few resources around pornography:
• short video: 'Is it normal to watch porn'?
• The Light Project website (NZ) – this site discusses porn for young people from all angles - although it's not specifically geared to neurodisability.
• The Mad Hatter Wellness website is specifically geared to talking about sexuality for those with intellectual disability – it has many helpful resources and blogs. Here's one specifically about discussing porn with your young person.
Impulsivity, eagerness to please, lack of judgement and recklessness all contribute to a well-documented over-representation of rangatahi with FASD within our courts and penal system.
Many parents and caregivers have found it helpful to introduce their rangatahi to the local police. They can explain some of the basics of FASD to them and ensure that caregivers are called direct should their teen or young person get in trouble.
We have a pamphlet on our resources page which you can download and either email or print out to hand over to police – you could even encourage them to ask their colleagues to read it. Click here to access our police pamphlet.
There is more information for police on our professionals page under Police and Justice, including online training for them about FASD.
It can also be a good idea for your rangatahi to carry on them a personalised FASD-CAN wallet card, which they can hand to police that will inform them that they have FASD and also has contact numbers for up to three support people.
However, if problems with the law occur, it's very important to communicate clearly with professionals working in the justice system to ensure they can help both the parent and the young person get through this challenging time.
There is quality, FREE legal advice available from Youth Law - call 0800 UTHLAW, email at [email protected] or find them on Facebook here.
If your child has communication problems within a justice setting you may be able to access help from Talking Trouble Aotearoa. They can help with a Communication Assistant in Youth, District and High Courts and Family Group Conferences for witnesses or defendants who need assistance with understanding and participating in these settings.
This is a 20-minute presentation by Professor Anita Gibbs of the University of Otago. Professor Gibbs is a much-respected lecturer in sociology and criminology and is a registered social worker. Her research studies have included electronic monitoring, mental health, adoption, transcultural parenting, defining social work research, auto-ethnography, and FASD and its effects on families. Anita also facilitates a parent support group for families caring for individuals with FASD in Dunedin.
Anita and her partner have a birth daughter and two boys they adopted from Russia. She shares here a remarkable joint presentation with her teenage son Dima in the context of their own experiences in the NZ justice system.
‘What Works Well and What Doesn’t Work so well for young people with FASD in the Youth Justice System in Aotearoa New Zealand’ was part of a two-day virtual conference, 'Let's Continue the Conversation' at the Lakeland Centre for FASD in Canada in October 2021.
Click on the image below to go to the presentation.
In 2020, Judge John Walker proposed a new pilot scheme to deal specifically with young people who were coming into the New Zealand courts who had a background of trauma and/or neurodiversities. This programme is called the Young Adult List (YAL) and is about ensuring that young people with neurodiversities who find themselves in court know what's going on and if necessary, have a communication assistant. There's more information about the pilot scheme here.
The YAL pilot has been a highly successful and has now been rolled out permanently in Porirua, Gisborne and Hamilton. It uses various approaches including plain language in the courtroom, improved information for judges, sharing information between the Youth, Family, and District Courts and engaging local agencies and community services to ensure a holistic approach to supporting young adults who have a neurodiversity or trauma. It also helps connect young adults to interventions aimed at addressing the root causes of their offending, so they are less likely to offend in the future.
Click here to find out more about the YAL and how to utilise it if you are in one of these regions.
• A screening tool is also now being utilised to identify young adults who may have neuro-disabilities or other characteristics that could affect their ability to comprehend and participate in court proceedings. The goal is to ensure that the court process is fair and accessible for all young adults, taking into account their individual needs and limitations.
• Click here to watch a FASD-CAN webinar with Sally Kedge, a speech-language therapist and court-appointed Communication Assistant from Talking Trouble, and Kesia Sherwood, a young lawyer who did her PhD on the YAL. You'll find other helpful resources from the webinar on this page, too.
Around Aotearoa there are many grandparents raising their mokopuna. It often comes with some big challenges, but you are not alone: a NZ group is dedicated to helping tūpuna raising grandchildren. It's the only organisation dedicated to providing information, advice, support and advocacy specifically for full-time grandparent caregivers.
Click here for more details.
Partners and fathers are enormously important when it comes to FASD.
The first role they play is avoiding alcohol when trying for a baby. New research shows that alcohol does indeed affect sperm and can contribute to miscarriage, birth defects and stillbirth. There is still insufficient evidence to confirm whether prenatal alcohol does play a role in sperm contributing specifically to FASD, but it's worth men avoiding alcohol in any case.
The next role men play is in supporting their partners in an alcohol-free pregnancy – wāhine hapu / pregnant women must be supported by the entire whānau to have an alcohol-free pregnancy and partners can help with this.
However, if a diagnosis of FASD has been reached, there are many ways men can be an involved and contributing parent. Tamariki and rangatahi can be extremely challenging on both individual caregivers / parents and on marriages / partnerships, so it's essential for parents to be on the same page and back each other up. Become as FASD-informed as possible, attend the same courses as your partner, and become a coach, mentor and role model.
Elizabeth Elliot, Chair of the advisory group for FASD-Hub Australia introduces this recording of a webinar on the subject held in September 2022 about the male role in FASD.
Click here to watch the video.
Other resources mentioned in the webinar can be accessed here:
In Aotearoa, we have a few support websites specifically for fathers including:
• Fathers for Families (ten week course through Family Success Matters)
and many more on Health Navigator NZ.
If you are a caregiver or parent of a tamariki or rangatahi with FASD, their long-term welfare is a worrying thought – if anything happens to you, or when eventually you die, who will look after them? What is their legal position and who will support them, understand their needs and make decisions about their welfare on their behalf if they are unable to do so?
You may be concerned about managing and protecting assets or income of your adult offspring. There are legal ramifications that need to be understood around family trusts, welfare guardianship, powers of attorney, property management and how a trust may be useful for managing property. And of course a will is essential.
New Zealand charity Disability Connect runs regular webinars and they have kindly allowed us to share the excellent list of digital resources they send out to their attendees afterwards.
You can subscribe to their newsletter here to stay updated on upcoming Disability Connect webinars (and their Transition Expo in September 2023).
Disability Connect webinars on this subject are run by lawyer Nan Jensen. You can check out Nan’s Facebook page (Abilityworx) and her YouTube channel where you can watch various videos on this subject.
• Health & Disability Commission links
– the Code of Health and Disability Services Consumers' Rights
• Enduring Power of Attorney info
• Legal Services | Disability Connect
Child to Parent Violence and Abuse (CPVA) is a frequently hidden and complex issue which often arises in families caring for an individual with FASD. It continues to be misunderstood and minimised outside of the family home.
New Zealand research (Gibbs, 2024) found that 57% of families in the FASD community are experiencing or have experienced violence from their child – and if you are in this group, you are not alone.
If you are experiencing CPVA please be assured that it is not due to poor parenting – it can be because the young person in your care is struggling to regulate and/or make sense of their emotions. This can be extremely frustrating and can result in a need to dominate, coerce, and gain control over their parents/caregivers.
Displays of aggression and violence by children/adolescents towards adults that are intended to threaten and intimidate and put family safety at risk can include:
People experiencing CPVA report that they are always in a state of hyper-vigilance and feel like they are walking on eggshells waiting for the next explosion. Some of the common mental health effects of family violence are PTSD, depression, anxiety, low self-esteem, suicidal thoughts, hopelessness and fear of the future.
Support groups for people living with CPVA can be extremely helpful – to be with others who understand you and can support you through these moments can be literally life-saving.
Luckily help is at hand in the form of new agency VisAble in Aotearoa which has created a caregiver, parent, grandparent and whānau support group, alongside a range of resources for both caregivers and the professionals who support them. See tab below for more info.
It's essential to keep yourself safe in order to be there for your child in the future.
If you are in immediate danger ring 111. If unable to speak, press 55. Let them know that your child has a neuro-disability.
• Shine Family Violence Agency is a national organisation offering a free helpline, training, and consultancy throughout New Zealand. Call 0508 744 633 for 24/7 help and counselling.
• Lifeline Aotearoa – don't hesitate to reach out by calling them on 0800 543 354 if you are in crisis or having suicidal thoughts.
In early 2025, VisAble ran a survey for parents, caregivers and siblings who had experienced Child to Parent Violence and Aggression (CPVA). The survey was not only for whānau of those with FASD but for any who had experienced CPVA.
The responses were sadly not a surprise to VisAble's Lee Tempest, a FASD-CAN member who was the lead on this study, as she has lived experience herself of CPVA and has worked with many whānau living with it.
The results of the survey have now been summarised in a report. VisAble expressed their gratitude all who took part – this included some FASD-CAN members:
We would like to thank the courageous parents/caregivers, grandparents and siblings who placed their trust in us to share their experiences of child to parent violence and abuse within their home. Your stories are a precious taonga to us and we hope we have honoured your lived experiences in this summary.
Here are some of the quotes from parents who worked with VisAble on the survey:
“Even putting things down in writing helps… it’s good to know others also experience this and that there is someone who is wanting to understand / help families like ours – thank you for doing this.”
“I feel very ashamed that my child behaves this way towards me. I blame myself that our relationship is so dysfunctional that he treats me this way. Ignorant people judging my parenting and coping strategies and giving overly simplistic solutions, which only makes me feel even more alone and stuck in this situation”.
It was interesting to note that '96% of parents/caregivers recognised that the behaviour was often linked to their child’s disability, sensory needs, reduced cognitive and executive skills or mental health and had adapted their parenting to accommodate their child’s needs'.
“[A diagnosis] taught us more about parenting and disabilities. It actually allowed us to see how much our son was struggling and, along with other factors, led to a drastic change in lifestyle, which is still hard but we can see improvement”.
NOTES:
• Lee Tempest was interviewed by Jesse Mulligan on Radio NZ on June 25, 2025. You can listen to the interview here.
• If you are experiencing CPVA, we have information and more support in the CPVA section of our Caregiver and Whānau Support webpage – click here.
• VisAble has a regular support group for whānau experiencing CPVA.
• Note that this survey was conducted with parents and caregivers who are currently experiencing CPVA – not the general population of those who are caring for neurodivergent tamaiti/children.
VisAble is a disabled person-led organisation which was launched in mid-2024. People employed work in the areas of disability rights, safeguarding, adult safeguarding, and the prevention of violence against disabled people.
They are dedicated to ending violence towards tāngata and whānau whaikaha Māori, tagata sa’ilimalo and their āiga-tele, d/Deaf, disabled people, Adults at Risk (across the lifespan) and their families.
Together they have extensive experience and expertise in working with the disability communities, government, police, health, disability and the family violence and sexual violence sectors. Their goal is to create safety and wellbeing and improve outcomes for people who are experiencing violence, abuse and neglect.
VisAble have created a range of CPVA resources for caregivers and professionals - see below.
No one deserves to live in a violent home and everyone has the right to be safe and supported. The main difference between CPVA and other forms of violence is the parent’s inability to leave the situation to protect themselves as they are still legally responsible for the child’s safety. This means that they are an Adult at Risk.
An Adult at Risk is:
A Safeguarding Adults Response
Each family is unique and requires a tailored and culturally safe response. VisAble recommends a Safeguarding Adults from Abuse (SAFA) multi-agency response. They recognise that that there are limited supports in Aotearoa New Zealand for families living with CPVA. They are working on an action plan to build capability within services to equip and enable them to respond safely and appropriately. You can contact VisAble for advice and support by emailing [email protected] or phone 0800 99 88 58.
A support group has been set up for anyone who needs help dealing with the effects of CPVA.
The CPVA Peer Support Group is open to parents/caregivers throughout the year.
The group is held online via Zoom on the first Monday of every month, 7pm to 8.30pm.
For more informationa and to get your Zoom link, please contact: [email protected]
Find out more by downloading the support group flyer here.
VisAble have developed a range of resources for caregivers / parents / grandparents and whānau as well as for professionals supporting whānau dealing with CPVA.
Click the links below to download:
• CPVA Report by Lee Tempest of VisAble, August 2024
• CPVA Resource booklet for caregivers, parents, grandparents and whānau
• CPVA Resource booklet for professionals
If you are a caregiver, or are working with a child who struggles with aggression, this brochure from the Canadian FASD Network may be helpful to pass on. It talks of aggression as an iceberg – what others see is just the tip of complex underlying challenges.
Click here to download and print the brochure.
NoFASD Australia have produced a webinar series called Child and adolescent to parent/carer violence and abuse which are presented by University of Otago Professor Anita Gibbs.
These webinars look at the issue of CPV and the impact that it has on family members, how professionals respond and strategies that may help to reduce the family distress.
Click here to go to the first webinar, and here for the second.
Published 24 January 2024
Professor Gibbs is a registered social worker who has taught social work, sociology and criminology courses for 20 years at the University of Otago. Her research interests include Fetal Alcohol Spectrum Disorder (FASD) and complex disabilities, especially identifying best practice in helping families and best evidence for professionals in their interventions with families.
Abstract: Child and adolescent-to-parent violence and abuse (CAPVA) refers to abusive and violent behaviours by children towards their parents or primary caregivers. The abuse and harmful behaviours can include a full range of physical, emotional, verbal, financial, and material actions over prolonged periods of time, from childhood to young adulthood. Parents and caregivers of children with neuro-developmental conditions are vulnerable to CAPVA, and little research has been undertaken exploring the experiences of caregivers of children with fetal alcohol spectrum disorder (FASD).
In Aotearoa New Zealand, 56 caregivers were interviewed using semi-structured interviews, and over half identified significant levels and impacts of CAPVA, including dealing with physical violence and frequent emotional abuse. Health and stress issues were present in all caregivers interviewed. Caregivers also identified how systemic ignorance and a lack of understanding from caring professionals led to parent blaming, a sense of shame and isolation. Yet caregivers also showed resilience and implemented strategies of de-escalation and distraction.
More specialised practice is needed in this emerging field of family violence and in how to support families with children who have FASD.
Click here to read the full article.
We've curated some FASD training options for you to consider – both informal and formal.
Your listing of whānau-led FASD caregiver support groups who meet regularly around the country, including our online support group.
Sign up to receive more information such as relevant news or events – it’s free, there’s no requirement for input from you, and there are some great benefits built in. By joining FASD-CAN you’ll gain access to specific resources, advocacy, webinars and hui, and you'll be sent a free printed copy of our Handbook.
But even better – by becoming part of our team, you’d be helping us out. Staying informed and sharing information with others means you’ll be walking alongside us as we campaign for those impacted by FASD for the right to live their best lives.
Join us now!
We’re celebrating a decade of growth, development and support for those living with FASD, so we got in touch with some of those founding members to ask them about the early days of FASD-CAN – and to look at what has happened in more recent times.
Read more
Do you have some time to help us help others? We often need volunteers to help with our activities, or who are able to offer support to others, start a support group, fundraise or assist at awareness-raising events. If you have expertise to share (and all of us who have lived with someone with FASD has built up some knowledge of behaviours, strategies, contacts and more), your skills could help others.
If time is short, other options for input could include joining one or both of our private Facebook groups to share information that may help others – our Parents and Professionals group or our Parents and Carers Support group.
And please consider contacting local MPs to ask for more recognition of FASD – your voice matters, and together we can be stronger!
