The school environment is extremely challenging for most students with FASD, irrespective of IQ or background. We fully understand that it's also challenging for many teachers trying to manage the FASD behavioural symptoms observed in a school environment, both in the classroom and the playground.

We want to tautoko / support both sides of this relationship, because two points are very clear:

• an inclusive education is one of the most powerful and important indicators of later-life success for those with FASD; and

• when kaiako / teachers are FASD-informed, they find teaching these neurodiverse students easier and more rewarding.

FASD-informed academic and behavioural support and supervision of the child both within the class and playground is essential at school. Usually, the unstructured activities and need to interpret social interactions in the playground make support and supervision in this area of school essential, but sadly lacking.

Walking beside caregivers and whānau

Many children with FASD have mixed feelings about school. They love the social interaction but get frustrated and anxious about academic learning. And most parents/caregivers find the education of their tamariki and rangatahi the most difficult, problematic and draining aspect of their FASD journey. 

Something we hear constantly via our member discussion groups and from our own lived experience at FASD-CAN is that many schools do not listen to caregivers and whānau when it comes to learning more about these ākonga. Effective, open communication between home and school is absolutely vital to a successful educational experience for a child with FASD – and for their teachers!

Caregivers and parents know better than anyone what works and what doesn't for their tamariki or rangatahi, and there is no doubt that many sad and stressful situations would have ended very differently if schools, educators and support workers accepted this and prioritised working closely with whānau wherever possible.

Note: if caregivers or whānau require information about FASD, please feel free to direct them to our caregivers guide to FASD and the Education System. There are some resources here that both caregiver and teacher can complete together to ensure both are on the same page regarding the ākonga / student.

Ideas that will help me achieve at school – from an FASD perspective

Helping me remember

• Signs with pictures that show me what to do are helpful
• Reminders written down on the board
• Written messages to take home rather than oral messages I have to remember (or email messages direct to home)
• A visual timetable
• Give a warning (or two) a few minutes before I have to change an activity
• Frequent checking with me to ensure I know what I am doing (and checking I have the things I need at home).
• Giving me one instruction at a time
• Praise when I do remember ... but don't expect this to be possible all the time.

If I don’t always do the right thing it's probably because I can’t, not because I won’t!

Helping me learn

• Well-explained, simple, clear oral and written instructions given step by step
• Check my understanding
• A model or visual example
• A quiet space where I can work by myself
• Lots of opportunities to practise new ideas
• Lots of repetition
• Clear boundaries and expectations
• Routines that are regular and easy to predict
• Giving me specific feedback
• Praise for every small achievement or improvement builds self-esteem and a desire to keep trying
• More time to do things so I can think about things properly and not rush
• Checking with me regularly and helping me think a bit more, rather than expecting me to ask questions
• Pitching my work at the correct level for me, not necessarily the same as my peers.

Helping me behave

• Listen to my parents/caregivers. They know me best and have already had to develop strategies and techniques to manage my FASD symptoms. Do not think you know better.
• Work with my parents/caregivers to be as consistent as possible in approaches to my symptoms at home and at school
• Explain to me what you expect and how you want me to act
• If I get angry, let me calm down before talking to me about it
• Have a safe place for me to go when I am getting angry
• Have a safe adult who can help me when I need help
• Visual prompts to show me what to do
• Tell me about changes to the routine as soon as you can
• Tell my parent/caregiver before something happens so they can help me understand what is happening
• Give me regular times during the day when I can let my brain rest, and reduce my stress and anxiety
• I do not do well when I am expected to manage myself, I do better when someone can support me
• Tell me when I am doing things the way I should be - praise is great!
• Sometimes I can be encouraged to do silly things by others. Please help me to know when others are not helpful to me.

Communication that builds my self-esteem

The way you talk to me is really important to my self-esteem and desire to learn. It can make or break our relationship.  I know I will do things that will 'push your buttons' and that may be dangerous or inappropriate at times. It is NOT deliberate.  My brain makes it hard to think clearly and act in a way most people would find acceptable. Sometimes I can, but I cannot do it consistently. This is the unpredictability of FASD. I don't want to be the 'naughty' kid no one likes or wants to have in their class, but I cannot change my brain (although I often wish I could!). 

The impact of the prenatal alcohol use had on my brain development means I am often uncertain and anxious inside. I tend to be in constant readiness for a 'flight or fight' response. Get to know me, learn from what my parents/caregivers have told you about me, and try to adjust your expectations so I don’t get triggered and the pressures of learning and school participation don’t build up.

Consequences

Please think carefully about why I may have done something wrong that requires a punishing 'consequence'.  Have I done the thing I did because of my brain damage, which I cannot change no matter how hard I might want to, or because I made a deliberate thoughtful decision to do something wrong? Both are possible, but it is usually because of my brain.

Any consequence for the choices I make because of my brain damage should always be used as an opportunity for restitution and learning. This will be mana-enhancing and encourage me to keep trying. Talking about growth mindsets and learning from mistakes is also helpful, as is the phrase: "You can't do it YET!" 

Educators should also have realistic expectations about the effectiveness of consequences in changing unwanted choices or behaviour. My choice or behaviour is not because I am trying to do the wrong thing. It is the brain damage which has resulted in issues with short-term memory, the lack of development and ineffective neural links to the cerebral cortex.  

The anxiety and academic and social confusion I feel most of the time is bubbling away unseen beneath the surface.  This results in cortisol rushing through my system, and can quickly turn into a fight and flight responses to any unwanted stimuli or some fear, frustration, or anxiety. 

If a consequence is appropriate for my actions, it needs to be short, pitched at my developmental capabilities, directly related to the incident (a natural consequence), and predictable – i.e. the consequences for certain behaviour had been explained to me beforehand and I had been regularly reminded of them because of my memory problems.  

Some final points

BEING 'DIFFICULT' – if I'm unhappy, unfriendly or difficult this will almost certainly be because I am confused, frustrated, tired or angry. Please take the time to understand me if you can.

HOMEWORK – when I'm at school I use an enormous amount of my energy to keep myself safe and focused. At the end of school I am extremely tired and do not cope well with homework. It would be great if you could think about ways to minimise homework or make it more manageable. Neuroscience has proven through the use of PET scans that the brain of someone with FASD uses 3 x more energy than the brain of neurotypical individual.

DECISION MAKING – FASD means that my brain has trouble thinking of lots of things at once. This makes it really hard for me to make choices and decisions. It's helpful when I have someone else to help me understand what the choices are and how they might affect me.

INFLEXIBILITY – My FASD brain also means that I cannot change my thinking quickly. I 'think in black and white' and have trouble with thinking outside this. If you do have to change things, please help me by preparing me first.

MY TALENTS – when I can work within my talents I can show you amazing things. Please let me have regular opportunities to work in these areas.

I can't change the way I was born, but you can help make my environment be a place where I can achieve success!

Below are links to two recent (2023) 'overview' resources for educators who have a student or students with FASD.

• 'Key Facts about FASD for Educators', a downloadable pdf from Dr Vanessa Spiller in Australia. 

This document looks at differences in brain function in students with FASD specifically from the point of view of an educator. Some neurodevelopment information is essential for teachers to be able to understand the differences between symptoms and behaviours and how best to accommodate both. 

• 'Building Block for Success: Understanding and supporting children with FASD in the school environment', a webinar recorded in November 2023, hosted by FASD Hub Australia and Learning With FASD .

Experts in education, paediatrics, and occupational therapy provide an overview of the common challenges that children with FASD may face in the classroom, as well as strategies to set them up for success. 

Click on the pic below to access the webinar. 

In Aotearoa's education system, kaiako / teachers must navigate diverse learning needs, curriculum demands, and the constant juggle of administrative tasks. AI apps are emerging as transformative tools, not just for individual teachers, but for the entire learning ecosystem within our kura and schools. They can become powerful allies to support every ākonga / learner, especially those with unique needs like Fetal Alcohol Spectrum Disorder (FASD).

This information will be updated regularly, as the AI world is moving very fast!

Click here to read or download our resource on the current and most helpful apps we have found for educators, and the best ways to use them. 

FASD-CAN has recently launched a brand-new desktop resource especially for educators. The FASD Learning Support Tool is a downloadable, interactive, NZ-specific digital tool which is a collection of the best resources available for learning support staff and kaiako. 

Who is it for?

The tool is intended to be of use primarily by learning support staff – RTLBs, SENCOs and Learning Support Coordinators – but also by teachers seeking information on students with FASD. 

Why was it developed?

At FASD-CAN we believe understanding the brain of those with FASD and making accommodations for their brain differences is critical to their inclusive education. The differences seen in FASD are unique for each child.

Whilst some aspects overlap with other neurodiversities, FASD is often not understood or recognised (it's often referred to as the ‘hidden disability’) and currently, students with FASD frequently struggle within the education system. Evidence shows that getting through school can be a critical step for those with FASD; if they are excluded, their future options can go downhill rapidly.

The internet has an enormous array of fantastic – and less fantastic – resources on FASD and education. We are confident that this tool collates the best resources in one place; it also gives a New Zealand specific lens to the resources and to make it easy to access information on a permanent downloadable desktop resource.

Who made it and what is it based on?

The tool was developed between FASD-CAN and Manawanui RTLB (Resource Teacher; Learning and Behaviour) Cluster 10, with RTLB Trish Porter leading the development. The tool also benefited from the digital tech skills of Vicki Wilson and input from the FASD-CAN education sub-committee.

The resource follows the pathway of He Pikoura, the framework used in Aotearoa by learning support practitioners to collaboratively work with students and their whānau. 

We have added resources at each step in the He Pikorua sequence to support effective interventions for students with FASD and those who have behavioural symptoms displaying traits of FASD. 

How do you use it?

CLICK HERE TO DOWNLOAD THE RESOURCE.

We advise you to get familiar with it, then keep on your computer desktop to access whenever you need help.

We hope this resource will help those professionals who support and educate children with FASD to understand their brain-based differences.

There is a valuable resource for educators on the Ministry of Education's 'Te Kete Ipurangi' (TKI) website.

This covers understanding FASD, strategies for action around identifying needs and support, strategies for specific year groups, and some excellent international resources, too. 

A new (2025) and excellent website called 'Learning with FASD' was developed by the Matilda Centre for Research in Mental Health and Substance Use with funding from the Australian Government.

Learning with FASD was informed by input from researchers, experts, and educators across Australia.

It aims to inform educators about FASD and give strategies to work with students who have FASD in an informed, strengths-based and positive way. There are specific sections for primary and secondary schools, as well as a great range of resources such as factsheets and webinars.

Click here to head to the Learning with FASD website.

Evidence-based research shows that individuals with a neurodevelopmental disorder such as FASD who receive early interventions and support will have markedly better long-term life outcomes than those whose disability goes unrecognised and therefore unsupported.

Those working in the early childhood education sector play a huge role in supporting children and whānau as they navigate their way through the first years of life.

Kōwhiti Whakapae

Kōwhiti Whakapae is a practice and progress tool developed by the Ministry of Education to sit alongside Te Whāriki, Aotearoa New Zealand’s early childhood curriculum framework. While Te Whāriki tells us what we value in early learning, Kōwhiti Whakapae provides the how—offering specific markers to help kaiako move from "noticing" learning to intentionally "recognising and responding" to foundational skills.

• Click here to access our info sheet summarising the tool with respect to FASD in ECC.

• Click here for an extended resource.

Through Different Eyes

NOFASD Australia has developed a comprehensive suite of resources designed to give early childhood educators research-based strategies designed to meet the diverse needs of children with FASD.

The  suite of resources was launched on 9th September 2022. They're designed to raise awareness of FASD for those working in the Early Childhood sector to help build educator knowledge, skills and understanding, but they'll also be useful for families where a child has either diagnosed or possible FASD.

There's an educator's guide, a poster, a brochure and some videos in the group of resources.

Find out more here about the 'Through Different Eyes' resources. 

Learning to self-regulate is a big issue for most tamariki with FASD. 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. It can be very handy for them to have noise cancelling headphones, sunglasses or perhaps a fidget toy on hand. To avoid major distractions, it's important to anticipate sensory overload scenarios in class before they happen. 

Teachers can help facilitate this for them by having a low-sensory area somewhere in the school, and several sensory breaks during the day.

More and more teachers are integrating regular sensory breaks and sensory learning strategies into their classroom and school days to help all students to be in the best state for learning and to assist with self-regulation – but this is even more important for those with FASD. 

'Heavy Work' and Sensory Self-Regulation

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 FASD 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 excellent 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. 

The ALERT Program®

The Alert Program® was developed by Mary Sue Williams and Sherry Shellenberger, American occupational therapists.  The programme teaches children how to manage and change how 'alert' they feel during the day so they are in the best possible position to attend, learn and self-regulate.  "Self-regulation is the ability to attain, maintain, or change how alert one feels appropriately for a task or situation.” – Williams & Shellenberger, 1996, pg 1-5. 

The Alert Program® teaches children that their body is like a car engine and asks them to identify if their engine is running too high (i.e. hyperactive, unfocused), too low (ie. tired, listless, bored), or 'just right'.  Children are taught their own unique set of sensory strategies to help them to maintain themselves in the 'just right' range to attend and learn.  The Program also develops the concept of 'heavy work' which can be used in all situations to get learners into the 'just right' range for learning.

More information about the evidence-based ALERT Program® – or view this video: What is the Alert Program®?

For a good, basic explanation of the philosophy and science behind the program and why it works you can read this article: Alert Program Overview

Note that a 2015 study found that children with FASD who used the Alert Program for self-regulation under supervision for 12 weeks for 1.5 hours a week, showed an increase in brain grey matter. Read the report here. 

Soh, D. W., Skocic, J., Nash, K., Stevens, S., Turner, G. R., & Rovet, J. (2015). Self-regulation therapy increases frontal gray matter in children with fetal alcohol spectrum disorder: Evaluation by voxel-based morphometry. Frontiers in Human Neuroscience, 9, Article 108.

Relax Kids 

Relax Kids is an evidence-based programme developed in England. It involves a seven-step holistic process that provides children with strategies and tools to calm their mind and self-regulate their body. It's also designed to build self-esteem and confidence. It uses a range of active, then mindful and relaxation strategies, and positive affirmations in the 7-step process.  

For more information about the Relax Kids Programme visit this website.

There is much information on the internet about activities and sensory tools that can be used to help your students self-regulate.

Here are some other website ideas from the many available:

LemonLime Adventures

Twinkl

Sensory Processing Disorder - break ideas

This important recent study on FASD in educational settings should be read by all educators. We are grateful to FASD United to be able to share it with a New Zealand audience. 

Click here or on the pic below to see an infographic of the results of the study.

Background to the study

Students with fetal alcohol spectrum disorders (FASDs) often have challenging school experiences.¹ 

There are unique experiences associated with having FASD, such as difficulties with memory, executive functioning, and emotional regulation.² 

There are also significant impacts from stigma, misunderstanding, and lack of appropriate interventions and support in the educational setting.³ 

To quantify these challenges, the FASD and Special Education Survey focused on educational experiences for students with FASDs.

The survey was active from March 2023 to February 2024.

A total of 684 caregivers, professionals, and self-advocates from 43 states responded, sharing strengths, barriers, and recommendations. 

References

[1] Lees, B., Riches, J., Mewton, L., Elliott, E. J., Allsop, S., Newton, N., Thomas, S., Rice, L. J., Nepal, S., Teesson, M., & Stapinski, L. A. (2022). Fetal alcohol spectrum disorder resources for educators: A scoping review. Health promotion journal of Australia : official journal of Australian Association of Health Promotion Professionals, 33(3), 797–809.

[2] Felgueras, N., López-Díaz, J. M., & Garrote, I. (2024). Effects of Developmental Timing on Cognitive and Behavioral Profiles in Fetal Alcohol Spectrum Disorder: Considerations for Education. Behavioral Sciences (2076-328X), 14(6), 431. https://doi-org.ezproxy.co.carver.mn.us/10.3390/bs14060431

[3] Cleversey, K., Brown, J., & Kapasi, A. (2017). Educating Adolescents with Fetal Alcohol Spectrum Disorder: Caregiver Support Needs. Journal of Child & Family Studies, 26(10), 2843–2851. https://doi-org.ezproxy.co.carver.mn.us/10.1007/s10826-017-0776-7

FASD-CAN has created a special double-sided pānui for educators with a handy mnemonic. 

'LORRRRSSSS (LORS) – not LAWS' covers the basics when setting up a positive environment at school or kura for ākonga with FASD. As we know, 'normal' laws don't tend to work that well for neurodiverse students, and everyone in the class does better when the way their brains work is understood and their needs are met. 

Creating a supportive and consistent school environment is vital for students with FASD. This LORS framework will guide educators by drawing on neuroscience, trauma-informed practices, and strengths-based perspectives to enable ākonga with FASD to reach their full learning potential.

The letters stand for:

Learning modalities, Observation, Relationship, Repetition, Role models, Routine, Self-esteem, Sensory overload, Strengths, Supervision & scaffolding 

Each of these topics has an expanded explanation on the back of the flyer.

Click here or on the graphic below to download. 

Nate Sheets is a behaviour consultant and parent coach with over 12 years of experience working with children and adults with developmental disabilities. He specialises in FASD, trauma, and cognitive skills. He's from Oregon and his website is Cognitive Support Consultation. 

Nate's '6 Things Educators and School Staff Should Know About FASD' (10 minutes) is a quick and concise overview for educators when starting out on their FASD journey.

It's widely accepted that that keeping those with FASD in school for as long as possible can avoid many problems later in life, and that with exclusion from school comes exclusion from society, which can set in motion an all-too-common trajectory towards the justice system.

School exclusion can often be avoided, however, if the FASD-informed interventions are begun early enough.

• FASD-CAN Webinar: Overcoming School Exclusion in Rangatahi

In September 2022, FASD-CAN ran a webinar presented by Cherryl Waerea-i-te-rangi Smith (Nga Wairiki/Ngati Apa), a grandmother raising a 16 year-old mokopuna who has a diagnosis of FASD. Cherryl has a PhD in Education from the University of Auckland and works as a researcher. In the webinar she shares her personal story about reinstating a mokopuna after being excluded from school. Click here to watch. 

• Exclusion to Inclusion Aotearoa

There is an Aotearoa-based website which has a number of resources for those experiencing, or trying to avoid exclusion, called Exclusion to Inclusion Aotearoa NZ. It includes digital presentations which discuss behaviour using a brain-based approach and identifies trauma-informed strategies which educators can use to support inclusion.

The above site also includes some also short films of rangatahi talking about what the impact of being excluded has been on their wellbeing. This video will be helpful to individuals, whānau, schools, Boards of Trustees, and people who work with tamariki and rangatahi.

In general, pregnant people and their partners want clear information about alcohol use during pregnancy. Healthcare providers need to be confident and ready to deliver this message clearly and without judgment.

Sometimes people tell us they were advised that 'alcohol in moderation is fine' – or received no advice on the subject at all. This might stem from a lack of up-to-date knowledge on the part of the healthcare provider, concern over causing guilt or anxiety, or assumptions about which demographics are at risk. 

Harmful effects from PAE have been consistently recognised by researchers since the 1960s. All major global medical groups, including Te Whatu Ora / Health NZ in Aotearoa, recommend completely abstaining from alcohol during pregnancy or when planning a pregnancy.

People consume alcohol while pregnant for many reasons—and it's never because they want to harm their baby. Reasons include:

• Not knowing they were pregnant due to using contraception incorrectly, or not at all – it's estimated that 50% of pregnancies in Aotearoa are unplanned / accidental.
• Feeling pressured to drink in social settings.
• Self-medicating to cope with stress or other problems.
• Unawareness of the current evidence on the risks of drinking during pregnancy.

Trust between the pregnant woman and healthcare provider plays a key role. Because of the stigma around drinking in pregnancy, some women may downplay or avoid disclosing their alcohol use altogether. Without trust, correct assessment may not eventuate – and early intervention that can mitigate harm will not happen.

It’s crucial that health professionals create a non-judgmental, safe space for pregnant women to discuss accidental prenatal alcohol exposure or to seek help if they are finding it difficult to stop consuming alcohol. Without talking about alcohol use, the repercussions ahead for the whole whānau could be life-changing.

Ideas to start the conversation

Raising the topic of alcohol use during antenatal care can be challenging. Midwives and other antenatal health providers may feel awkward or unsure of how to ask, lack proper training, or be working in systems without consistent screening processes.

• FASD Diagnostic Guidelines Aotearoa

The 2024 guidelines for diagnosis in Aotearoa also have a specific section with advice for these conversations.

Click here and scroll to page 68: 'Good Practice Statements: Prenatal Alcohol Exposure Assessment' for further information.

Click here to find out more about stigma and the language we can use to make PAE and FASD less stigmatising.

• Amohia te Waiora website

Click here for a suite of resources on this site which have been developed to help initiate conversations about alcohol in pregnancy.

• Te Whatu Ora fact sheet

Click here to download this helpful fact sheet – 'Alcohol-Free Pregnancy Key Messages'. 

FASD is often wrongly associated only with heavy drinking or alcoholism; however, even small amounts of prenatal alcohol exposure can cause it.

A significant factor when considering alcohol use in pregnancy is that nearly 50% of women in Aotearoa New Zealand, and indeed around the world, have unplanned pregnancies. This means that many women may still be drinking socially before they know they are pregnant – sometimes for several months.

It’s recommended that providers routinely ask patients of childbearing age whether or not they are planning to become pregnant within the next year.

If a patient does want to become pregnant, you can advise them on choices they can make to start preparing for a healthy pregnancy. This should include avoiding alcohol and other teratogens (a teratogen is a substance, like alcohol, that interfere with normal fetal development and cause congenital disabilities), taking folic acid or other supplements, and ensuring they have the right immunisations.

It’s a good time also to speak to partners: recent research is showing more clearly that male use of alcohol pre-conception can harm the baby. Click here for more information on male alcohol use pre-conception.

If a patient does not wish to become pregnant, you can help your patients select an effective form of contraception that fits with their lifestyle will help them prevent unwanted pregnancy.

It’s generally recommended that providers should include information about long-acting, reversible contraception (LARC) like intrauterine devices (IUDs) and implants, which have higher efficacy and higher continuation rates compared with short-acting contraceptives.

Patients can be directed to the Sexual Wellbeing Aotearoa website for further information on contraception.

Pregnancy healthcare providers represent the best opportunity we have to help avoid Prenatal Alcohol Exposure (PAE) and subsequent FASD.

The New Zealand College of Midwives’ first statement on their ‘Guidance for Practice’ web page is: “There is no known safe level of alcohol consumption at any stage of pregnancy. Therefore parents planning a pregnancy and women who are pregnant should be advised not to drink alcohol.”

There is an enormous amount of information on alcohol in pregnancy available, both nationally and internationally, which can support your own mahi as well as for you to direct your patients to.

• In 2024, an anti-alcohol campaign entitled ‘Nurture the Future Within’ was launched in Aotearoa NZ which aims to draw attention to FASD and avoiding alcohol in pregnancy.
  
  
• The Australian ‘Every Moment Matters’ campaign made headlines in 2022 as one of the most successful in the world. It aims to raise awareness of the risks of alcohol consumption while pregnant, planning a pregnancy or breastfeeding. It highlights that every moment is crucial in pregnancy when it comes to drinking alcohol, starting from the moment a person starts trying to conceive. There are lots of great resources for healthcare professionals on this link.
  
  
• The National Organisation for FASD in the UK released an alcohol and pregnancy toolkit in June 2023 which includes an interactive e-learning course designed to help midwives and other maternity staff, as well as information in a variety of formats (some interactive) on alcohol and FASD for people who are pregnant or trying to get pregnant. Click here to access the toolkit.

Pregnancy healthcare providers represent the best opportunity to help avoid Prenatal Alcohol Exposure (PAE) and subsequent FASD. However, if exposure does occur, the role of GPs, Paediatricians, and nurses (especially Child Health Nurses like Plunket and Well Child providers) shifts from primary prevention to developmental surveillance and vital early identification after the pēpi / baby is born.

Early Physical Assessment and Developmental Surveillance

Less than 10% of babies are born with the three distinct FASD 'sentinel features' (small eye openings, flat/long philtrum, very thin upper lip). Their presence is an indication of PAE, but most people with FASD do not have these features. The presence or absence of these features does not indicate how severe or mild the disorder is for the FASD person.

As an individual grows into adolescence and adulthood, these features can become less distinct. However, other physiologocal and cognitive challenges do not diminish even if the facial features become less apparent over time.

Other potential early physical signs that doctors and Child Health Nurses monitor may include: low birth weight, small head size, or slower physical growth. Crucially, these signs trigger close developmental surveillance for global developmental delay against established child developmental milestones.

Whole-Body Understanding

A growing body of research, including a study released in June 2025 by the University of Queensland, confirms that FASD is a whole-body diagnosis affecting metabolism, cardio-renal, immune, reproductive health, hearing, vision, and sleep. This reinforces the need for a holistic and lifelong approach to support.

Long-term physical challenges

People with FASD are many times more likely to be diagnosed with physical health conditions than the general population. Common co-morbidities include:

• Motor skill challenges
• Cardiac / heart defects
• Joint deformities or abnormalities
• Hearing and vision issues
• Dental issues
• Bowel and bladder functionality
• Congenital and chromosomal conditions
• Inflammation – early-onset problems with arthritis and other inflammatory diseases.

Recent research

Beyond the Brain: The Physical Health and Whole-Body Impact of Fetal Alcohol Spectrum Disorders

A study by the University of Queensland in June 2025 concluded that FASD is a whole-body disorder.

"A growing body of evidence suggests that individuals with PAE/FASD experience multiple comorbidities relating to metabolism, cardio-renal, immune, and/or reproductive health, 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 FASD. 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 FASD."

This chart from the report is very helpful – click here, or on the picture to access a full-sized, downloadable version.

Click here to read the full paper.

The 'Lay of the Land' survey (2020)

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. An understanding of these results will ensure timely and appropriate diagnosis and treatment for individuals with FASD.

Note: This report is currently only available as a chapter in a book – The Routledge Handbook of Social Work and Addictive Behaviours (Chapter 12). This book is available at the IHC library in Wellington (they can post it out if you order online).

Webinar – FASD: a whole-body diagnosis (90 mins)

A webinar discussing the above research aired on International FASD Awareness Day 2021 and featured Myles Himmelreich, along with clinicians and a parent advocate. It was hosted by Surrey Place, a not-for-profit organisation for neuro-developmentally challenged people in Toronto, Canada.

Click here to watch.

For children with FASD, dental anomalies that can occur include cleft palate, over- and underdevelopment of the upper and lower jaw; malformed, missing and/or misaligned teeth; late loss of baby teeth and late eruption of permanent teeth and higher rates of temporomandibular joint (TMJ) disorders.

In addition, poor oral hygiene due to trouble with motor skills or behavioural issues may show up as higher risk of plaque, decay, and gingivitis.

If prenatal alcohol exposure (PAE) is a known factor, or FASD has been diagnosed, a treatment plan should be put in place that takes all these factors into account.

Children, teens and adults with FASD are likely to experience significant stress when visiting the dentist – read our ‘creating a positive experience’ tab for ideas on how to mitigate overwhelm for these clients.

Problems with vision in people with FASD are so reliably common that they are used as a complementary tool for diagnosis of FASD under the ‘FASD Eye Code’. This code, first proposed in 2021 was designed to be easy to use both clinically and in fieldwork, and can be utilised in childhood to mitigate lifetime visual impairments in people with FASD.

This report (2021) from the New York-based Review of Optometry begins:

"Exposure to prenatal alcohol can result in a number of functional impairments, including ophthalmological abnormalities such as ptosis, refractive errors, strabismus, subnormal visual acuity and optic nerve hypoplasia. In those diagnosed with fetal alcohol spectrum disorders (FASDs), such ophthalmic abnormalities often result in visual perception problems (VPPs). A recent study investigated VPPs as well as health- and vision-related quality of life in young adults and found that this population had both more VPPs and lower quality of life scores than healthy controls."

Click here to read a research paper (March 2023) on the US National Library of Medicine website which set out to validate the FASD Eye Code (and succeeded).

Function and structural ear abnormalities are common issues in those with FASD.

A meta-analysis conducted in 2022 looked at the records of over 2,400 children with either Prenatal Alcohol Exposure (PAE) or FASD from 1806 to 2021.

• Common functional ear abnormalities included chronic serous otitis media, abnormal auditory filtering and unspecified conductive hearing loss.

• Common structural ear abnormalities included microtia, railroad track ear, and misplaced ear.

Click here to read this study.

Bowel and bladder dysfunction, including persistent urinary and fecal incontinence (enuresis and encopresis), is an extremely common and challenging co-morbidity in FASD. These issues often persist into adolescence and adulthood, well past typical developmental milestones, and are a major source of stress for the person, caregivers, and whānau.

The Challenges and Causes

Continence issues in FASD are primarily rooted in the brain's impaired executive function and central nervous system control, resulting from the prenatal alcohol exposure. This affects the core skills needed for successful toileting, including:

• Interpreting Body Cues: Difficulty accurately sensing or interpreting the physical cues of a full bladder or bowel in time to act.
  
  
• Executive Function: Challenges with impulse control (waiting), poor sequencing (the multi-step process of toileting), and difficulty remembering or initiating regular routines.

While the problem is mainly neurodevelopmental, a comprehensive medical assessment is essential to rule out structural or functional differences in the kidneys, bladder, or bowel, which are also more common in people with FASD.

Support and Resources

Support should integrate medical assessment with highly structured, informed behavioural and environmental strategies.

• Medical Assessment: Initial assessment by a GP or Paediatrician to rule out physical causes (like UTIs or congenital differences) and referral to a specialist.
  
  
• Continence Specialists: Referral to Continence Nurses (often associated with Te Whatu Ora / Health NZ services) or specialised clinics for tailored, non-judgemental management plans.
  
  
• Behavioural Supports: Implementing strict, scheduled toileting routines using visual aids and focusing on positive reinforcement to support habit building, which compensates for executive function deficits.

For specific New Zealand support, whānau / families can be directed to the continence services offered through their local health provider. The following resources offer national and local support:

• Continence NZ: This national organisation provides education, resources, and a helpline (0800 650 659) to connect people and professionals with local support and resources. Visit Continence NZ
  
  
• Hawke's Bay Children's Continence Service: This specialist service, located in Napier, provides individualised toileting programmes for children and adolescents with complex needs, including those related to neurodevelopmental differences. 
  
  
• Te Whatu Ora - Continence Services: Local continence nurses are available via referral for both adult and paediatric services in most regions. Contact Te Whatu Ora directly for referral pathways.

Visiting a health professional can be a highly stressful experience for individuals with FASD and their families. While caregivers and whānau often have strategies in place at home to limit exposure to sensory information, the sights, sounds, and smells of a health care facility or hospital may be overwhelming for some individuals.

It’s helpful for everyone to have an FASD-informed team of health care providers and administrators to help manage the stress that individuals and families may experience to ensure every visit to their health care provider runs smoothly – especially the first one!

Prepare ahead

• Ask patients or caregivers about any necessary support services before their visit.

• Notify the treatment team in advance if special accommodations are required.

• Offer staff training – talk to us or check out the webinar recordings on our training platform. Start with 'The Basics'.

• Designate quiet areas and clearly indicate where sensory accommodations are available.

Improve wait times if possible

• Minimise wait times for patients with neurodevelopmental disabilities and their whānau.

• Whenever possible, begin assessments and registration in a calm, quiet setting.

Modify the environment

• Dim overhead lighting and monitor room temperature; provide blankets if needed.

• Reduce noise or provide a separate room to wait in.

• Offer sensory tools to ease discomfort and help reduce anxiety.

Work with with caregivers

• Treat caregivers as the experts on their child's individual needs.

• Ask about successful strategies, sensory sensitivities and preferred communication styles.

• Encourage caregivers to comfort and redirect their tamariki or rangatahi if distress escalates.

• Always allow the primary caregiver to accompany their tamaiti during assessments and procedures.

• Pay attention to signs of caregiver stress and offer coping support if needed.

• Involve the caregiver in interpreting pain responses, which may vary widely in FASD.

Communicate effectively

• Use our 'KiSSSSSS' pānui to inform your team's communication with patients with FASD.

Gather information thoughtfully

• Begin by collecting the patient’s history from the caregiver, then clarify with the individual.

• Verify responses carefully, as memory and storytelling may be impaired.

• Ask targeted, sequential questions to uncover relevant information.

• Use direct questions such as “Do you have a cough?” instead of open-ended ones like “How are you feeling?”

Follow up

• Write down explicit instructions or offer visual step-by-step guides for post-visit actions.

• Refer patients or caregivers to local support where possible, or direct them to our website.

• Where possible, follow up to reinforce guidance and offer reassurance.

* Thanks to CanFASD for providing the basis of the above points.

Rangatahi / young adults with neurodevelopmental conditions (NDC) in Aotearoa New Zealand often face significant challenges when moving from child-based to adult services because the health, disability, and social care systems don't link up well.

The increasing number of people with NDC highlights the urgent need for a structured, culturally appropriate transition model that takes into account the lived-experience that an interdependence health and support model is the need and reality for most people with FASD—not independence. This approach must also address health literacy, which is the ability to find, understand, and use health information and services.

Due to the brain-based nature of FASD, these skills (such as managing medications, understanding complex instructions, and making appointments) require tailored, ongoing support that should be planned for during transition.

2024 University of Auckland study: Two-phase Delphi model

A recent study based at the University of Auckland involved a two-phase Delphi model, a technique for reaching a group consensus among experts through structured, iterative questionnaires and anonymous feedback. 

The study confirmed the urgent need for a structured, culturally responsive, person-centred transition model. It also set out a positive framework to guide future support, ensuring continuity of care and promoting autonomy for young people with neurodevelopmental needs. The study engaged 61 participants (including clinicians, educators and caregivers) to identify deficiencies in current transition services, inform development of a holistic transition tool, and define key domains for comprehensive transitional care.

Key Findings

The study:

• identified seven themes for service improvement including processes, resources, workforce, governance, and cultural responsiveness
• identified ten transition tool components: communication, health management, legal rights, daily activities, support networks, community integration, whānau and family involvement, cultural context, mental and spiritual wellbeing and sexual health
• revealed critical service gaps and opportunities for system-level improvement
• provided evidence to guide development of culturally grounded, person-centred transition planning.

Most importantly, it established a framework for a future pilot programme for testing and implementation of transition tools to establish continuity of care and autonomy for people with neurodevelopment conditions.

Click here to read this important study.

In 2022, researchers at the University of Auckland conducted an online survey with social and community workers to explore their knowledge, attitudes and practice (KAP) when working with people with Fetal Alcohol Spectrum Disorder (FASD). The survey was funded by a University of Auckland Faculty Research Development Fund.

Over 200 social and community workers completed the survey including but not limited to social workers, support workers, students, probation and correction officers, health promoters, youth workers, case managers and clinical workers. 

• Most participants were aware of FASD but reported only having basic understanding of it.
• Nearly half of the participants incorrectly believed that distinctive facial features are a feature of FASD; in reality only 10% of people with FASD show distinctive facial features
• Almost half of participants believed incorrectly that a diagnosis of FASD would enable an individual to access Disability Support Services when in fact an individual must have an IQ of 70 or less for DSS – which excludes the 80% of people with FASD who do not meet this criterion.
• Around a third of participants believed that a diagnosis of FASD would not improve outcomes for those affected by FASD.
• A majority of participants believed that diagnosis of FASD might lead to a child or their family being stigmatised.
• Most participants indicated that FASD was relevant to their work and would require a change in their behaviours and practices to best support people with FASD, while very few felt prepared to support someone with FASD.
• Only a third reported they had received training related to FASD in the last five years and few were aware of the resources provided by Te Pou [click here to access these FASD-informed training modules for front-line professionals].

These findings suggest that more resources and training is required to support social and community workers to effectively support people with FASD. This includes information on best practice guidelines to support people with FASD and information on available resources to support family members and people with FASD to access support. 

The full research manuscript is now available – click here to read it. 

McCormack, J. C., Chu, J. T. W., Wilson, H Rahman, J., Marsh, S., & Bullen, C. Knowledge, Attitudes and Practices towards Fetal Alcohol Spectrum Disorder in the New Zealand Social and Community Sector: An Online Survey

FASD: Essential Strategies
(booklet and online e-learning course)
A Resource for Frontline Professionals

This is one of the best Aotearoa-specific resources for professionals we have and we urge you to make it your go-to. 

The resources consist of a free downloadable handbook and an e-learning course, which 'sets out the essential values, attributes, knowledge and skills required to provide effective and compassionate support for people affected by FASD and their whānau.'

Click here  for both the e-modular online course 'An Introduction to FASD' and the booklet 'FASD: Essential Strategies'.

Scottish social charity Iriss published an 'Insight' research paper for social workers, specifically focusing on FASD, on 14 December 2022.

It acknowledges similar problems to the ones we experience here in Aotearoa NZ: "Anecdotally, social workers rate their knowledge and understanding of FASD as low and would not ordinarily know how to upskill themselves. This Insight is one step toward addressing that gap by covering the long-term impacts of FASD and how social work involvement can support better outcomes for people. Social work support can be preventative, and thereby, reduce escalation, avoid longer-term problems, and help break cycles of vulnerability, marginalisation and adversity.

In an ideal world, social workers would, in the name of social justice, be at the forefront of primary prevention. Unfortunately, that ideal world is not necessarily, or usually, the one where most social workers live and work. Frequently, social workers enter the picture ‘after the fact’; that is, once harm has already occurred. Then, the priority is to intervene quickly and decisively to help those affected and to ameliorate the adverse circumstances."

Key points

• Given the prevalence, severity and impact of fetal alcohol spectrum disorders (FASDs) on individuals and communities, there should be better social work knowledge and understanding of, as well as support for, these disorders
• Social workers can play a more positive role in the prevention and identification of FASD, as well as in services supporting those affected by it
• Increased awareness and learning opportunities, and more encouragement and resources are necessary for social workers to fulfil their potential in this field

Click here to access the full Insight from Iriss. 

For those working with tamariki and rangatahi affected by Fetal Alcohol Spectrum Disorder, the support standard is set by Oranga Tamariki. Their online Practice Centre has many resources for frontline professionals.

Click here to go to the OT Practice Centre FASD section. 

This one-page flyer is helpful for any support staff and has 11 informative strategies on specific challenges for those with FASD around memory and organisation, focus and attention, impulsivity and inhibitions and emotional regulation.

Download it here.

In 2022, researchers at the University of Auckland conducted an online survey with social and community workers to explore their knowledge, attitudes, practice and experience working with people with Fetal Alcohol Spectrum Disorder (FASD). The survey was funded by a University of Auckland Faculty Research Development Fund.

Over 200 social and community workers completed the survey including, but not limited to, social workers, support workers, students, probation and correction officers, health promoters, youth workers, case managers and clinical workers. 

• Most participants were aware of FASD but reported only having basic understanding of it.
• Nearly half of the participants incorrectly believed that distinctive facial features are a feature of FASD; in reality only 10% of people with FASD show distinctive facial features.
• Almost half of participants believed incorrectly that a diagnosis of FASD would enable an individual to access Disability Support Services when in fact an individual must have an IQ of 70 or less for DSS – which excludes the 80% of people with FASD who do not meet this criterion.
• Around a third of participants believed that a diagnosis of FASD would not improve outcomes for those affected by FASD.
• A majority of participants believed that diagnosis of FASD might lead to a child or their family being stigmatised.
• Most participants indicated that FASD was relevant to their work and would require a change in their behaviours and practices to best support people with FASD, while very few felt prepared to support someone with FASD.
• Only a third reported they had received training related to FASD in the last five years and few were aware of the resources provided by Te Pou [click here to access these FASD-informed training modules for front-line professionals].

These findings suggest that more resources and training is required to support social and community workers to effectively support people with FASD. This includes information on best practice guidelines to support people with FASD and information on available resources to support family members and people with FASD to access support. 

The full research manuscript is now available – click here to read it. 

McCormack, J. C., Chu, J. T. W., Wilson, H Rahman, J., Marsh, S., & Bullen, C. - Knowledge, Attitudes and Practices towards Fetal Alcohol Spectrum Disorder in the New Zealand Social and Community Sector: An Online Survey. Manuscript in preparation.

FASD: Essential Strategies
(booklet and online e-learning course)
A Resource for Frontline Professionals

A great Aotearoa-specific resource for professionals. The resource consists of a free downloadable handbook and an e-learning course, which 'sets out the essential values, attributes, knowledge and skills required to provide effective and compassionate support for people affected by FASD and their whānau.'

Click here  for both the e-modular online course 'An Introduction to FASD' and the booklet 'FASD: Essential Strategies'.

For those working with tamariki and rangatahi affected by Fetal Alcohol Spectrum Disorder, the support standard is set by Oranga Tamariki. Their online Practice Centre has many resources for frontline professionals.

Click here to go to the OT Practice Centre FASD section. 

This one-page flyer is helpful for any support staff and has 11 informative strategies on specific challenges for those with FASD around memory and organisation, focus and attention, impulsivity and inhibitions and emotional regulation.

Download it here.

This webinar by FASD Hub Australia is a valuable look into how social workers and support workers can help in diagnostic scenarios – before, during and after assessment and diagnosis: identifying families and individuals at risk, connect with schools and local services, alert the assessment team to relevant issues, and provide practical support throughout.

The role of social workers in supporting children and families towards and beyond a FASD diagnosis

Click here to watch. 

This is the best FASD resource currently available for mental health professionals in Aotearoa NZ.

CanFASD developed it in collaboration with the Canada Northwest FASD Partnership. It is a resource and practice guide for frontline mental health counsellors/therapists, prevention mentors, crisis workers, community mental health providers and those who work directly with individuals with Fetal Alcohol Spectrum Disorder (FASD). 

Click here to access the Mental Health Toolkit. 

A more comprehensive understanding of FASD among mental health professionals should lead to improvements in identification, intervention, and treatment strategies, as well as an informed perspective when making recommendations on child welfare, custody assessments, competency to stand trial evaluations, and diagnostic and treatment planning. The overall goal of this article is to provide a review of FASD for mental health professionals... The following information is offered to assist in the assessment and development of individualised rehabilitation/treatment plans for individuals with FASD ..."

Click here for a link to this article.  

Medication for People with FASD

This information is reproduced with thanks to CanFASD, the Canadian FASD leaders.

Medication can often help reduce or eliminate some of the symptoms that a person is experiencing. However, up until the development of this resource, clinicians had no guidelines to help them make decisions about what medication they should give people with FASD or neurobehavioral disorders. As a result, families reported that people with FASD were often being prescribed too many medications and those medications often didn’t work as expected.

Families and clinicians alike were calling for solutions to ensure people with FASD receive the appropriate medication. In response, researchers at CanFASD, in partnership with other organizations came up with the Psychotropic Medication Algorithm.

What is the Psychotropic Medication Algorithm?

The Psychotropic Medication Algorithm was developed to guide clinicians as they see patients with FASD and Neurobehavioural Disorders associated with Prenatal Alcohol Exposure (ND-PAE).

The medication algorithm is a step-by-step instruction manual that helps clinicians make decisions about what medications to give a patient with FASD/ND-PAE. It is the first-ever treatment recommendation for this population.

Since its launch in 2018, the medication algorithm has been one of our most successful resources. We’ve heard anecdotally from clinicians at the Canadian Paediatric Society conference that they use and recommend this resource regularly in their practice. It was the most downloaded resource on our website last year and is consistently one of our top five most viewed webpages. We’ve heard from families about its use, one individual citing it as an enormous success that stopped aggression in their household.

How did this project come about?

Some families and caregivers through CanFASD’s Family Advisory Committee (FAC) shared their concerned about the use of medication among their loved ones. Dr. Mansfield Mela, CanFASD’s Diagnostic Co-Lead and his team worked with the FAC to put together a group of experts, mainly north American and those experts come from FASD and non-FASD professions. The group met 4 times to review the literature and shared our experiences related to the topic.

Dr. Mela and a team of 12 multidisciplinary international experts spent over two years developing the decision-tree style medication algorithm. First, the team did a review of all the research literature on FASD and psychiatric medication. They summarized the results and gave them to a panel of experts to review.

The expert panel was led by a family member of an individual with FASD and consisted of top experts who had experience working with patients with FASD, including physicians from psychiatry, paediatrics, and family medicine. Alongside, these experts were an algorithm developer, pharmacologist, and research coordinator. Together, they created the medication algorithm.

The algorithm flowchart is below – go to the CanFASD website to find out more. 

• FASD-CAN recently published an Info Sheet on mental health and suicide for those with FASD. Sadly, it makes for sobering reading. 

"Due to the estimated prevalence of FASD in Aotearoa, and the greatly increased risk of suicide in this population, we believe FASD makes a significant contribution to our national suicide statistics. However, current initiatives do not address the extremely poor mental health outcomes and high levels of suicidality found specifically among the FASD population, or the workforce capacity building required to improve the level of FASD knowledge and training required across the entire mental health workforce."

Click here to read and/or download.

• CANFASD published a two-part video series (each is one hour long) in September 2023 on FASD, Mental Health and Suicidality. It was hosted by Dorothy Reid, and presenters Dorothy Badry, Kelly Harding, and Stephanie Howe shared their findings and the implications of a multi-phase research project focused on stakeholder perspectives of risk factors and opportunities for suicide prevention in FASD populations.

Watch Part One here.

Watch Part Two here. 

Our Hui on September 9, 2023 (International FASD Awareness Day) had a focus on mental health. 

FASD-CAN's 2023 Hui had a focus on mental health and our speakers on the subject included NZ-based FASD expert and two well-known and highly-regarded Canadian experts who Zoomed in.

Dr Jamie Speeden discuss changes in FASD-awareness in the psychiatric world in Aotearoa (alongside the realisation that we have a long way to go in this very challenged field), then Canadian forensic psychiatrist Dr Mansfield Mela spoke from a more clinical angle on the latest mental health research. 

Canadian Natascha Lawrence of the The FASD Institute spoke on mental health, substance use and addiction. Her empathy and compassion, together with her many engaging metaphors around how the brain works for people with FASD, were revelatory.

Click here to go to our Hui 2023 recordings. 

It's essential for all professionals to remember when communicating with people who have FASD that they have a brain injury which requires FASD-informed best practice. Plain language, speaking slowly and clearly, giving extra time for brain-processing are all basics.  

Our KiSSSSSS (Keep it Short, Simple, Same, Slow, Specific & Show) flyer is a good place for anyone to start in understanding how to communicate with people who have FASD. 

Click here to read and download.

In August 2025 at the FASD conference in Tāmaki Makaurau, Dr Valerie McGinn of The FASD Centre, along with FASD specialist Sam Galloway, presented a glimpse into the Criminal Justice System (CJS) in Aotearoa NZ for those within it who have FASD. They also introduced the targeted pilot programme they have set up to help these inmates avoid reoffending once released.

The talk was presented clinically and professionally as would be expected from Aotearoa NZ's leading forensic neuropsychologist, but the subject matter was emotional for the 300+ audience members.

It's clear that with FASD-informed police and justice kaimahi / staff involvement from the the beginning of an individual's interactions with the CJS, many of those with FASD could be kept out of prison in the first place. It's even clearer that at a cost of around $200K per annum per person to keep an offender in prison, it is better in every respect for the individual to be proactively re-integrated back into society wherever possible – by a team who understand the specific needs of people with FASD.

Dr McGinn has written a short article about the pilot programme for FASD-CAN.

Read article here.

Knowledge, attitudes and practices towards Fetal Alcohol Spectrum Disorder among lawyers in New Zealand

Joanna Ting Wai Chu, Holly Wilson, Jessica C. McCormack, Valerie McGinn, Warren Brookbanks & Chris Bullen

Published online: 08 Jan 2024

This study is the first in New Zealand to survey lawyers in the justice sector about their knowledge, attitudes and practices (KAP) about FASD.

Fetal alcohol spectrum disorder (FASD) is a developmental disability that can cause difficulties with communication, emotional regulation and executive function, making people with FASD vulnerable to adverse involvement within the criminal justice system. Justice professionals’ knowledge and attitudes of FASD is critical to identifying appropriate responses, management and sentencing in the justice system.

Of the 56 participants, most were lawyers. All participants were aware of FASD, but gaps in knowledge and inaccurate beliefs were common. Most participants felt unprepared to support a person with FASD to navigate the justice system.

Lack of knowledge and awareness of FASD is a significant barrier to fair and equitable treatment in the justice system and ensuring people have access to the support they need. Unless FASD is recognised and accommodated, many individuals with FASD will likely spend their lives revolving through the justice system, being misunderstood in court, victimised in prisons and mismanaged in the transition back to the community. This is a substantial financial burden and social cost to society and leaves people with FASD vulnerable in the justice system.

Click here to read the full paper.

It's important to know that people with FASD may seem 'normal', but there are five key areas which make a big difference when thinking about interview techniques. There are:

• Chronologial age vs development age: dysmaturity

• Brain processing speed

• Sensory processing

• Confabulation

• Executive functioning.

The Canadian FASD and Justice website expands these points https://fasdjustice.ca/en-ca/policing/5-key-impacts-of-fasd.html– click here to read.

The 'Prevention Not Detention' conference took place on the Tweed Coast in New South Wales in mid-September 2024. It provided educational opportunities for all front-facing professionals who will encounter Fetal Alcohol Spectrum Disorder – and that's everyone.

Organisers stated: "We all need to be trauma-informed, FASD-informed, and human rights informed if we are to prevent youth crime and youth detention ... Those who are affected by trauma and/or cognitive disabilities need help and support, not judgment and exclusion. At September’s conference we heard from national and international experts, psychiatrists, paediatricians, professors, researchers, and lawyers. We also heard from trauma counsellors and people with lived experience."

The conference website now has recordings of these presentations.

Click here for the speaker bios and subjects.

Click here to browse the excellent range of video recordings.

Here's a handy, double-sided printable information flyer that can go on the wall or be handed out to employees as the basis for ongoing training around FASD. Click here, or on the thumbnail below to access. 

As part of our 2022 webinar series our Patron, Judge Tony Fitzgerald, who is well known for his interest in making justice more equitable for those with neurodiversities, hosted a webinar looking at new initiatives in the New Zealand Courts for young adults with FASD. 

Our two speakers included Kesia Sherwood, who at the time was working on her thesis which was focused on young people with FASD and New Zealand's youth justice system (read Kesia's thesis abstract here). Since completing her PhD Kesia has been working as a defence lawyer for the Public Defence Service in Wellington.  

Sally is a speech-language therapist and court-appointed Communication Assistant. She is the director of a social enterprise, Talking Trouble Aotearoa NZ, which addresses the speech, language and communication needs of people involved with justice, care and protection, mental health and behaviour services. 

Click here to watch this one-hour webinar. 

When you come into contact with individuals who have, or are suspected to have FASD, it's essential to slow down and think about how you are communicating.

The person may have very high levels of expressive language, but there are many things you may be doing or saying that simply do not make sense to an individual with FASD. Be aware that they may tell you what they think you want to hear to get out of the situation. Stressed behaviour or meltdowns resulting from communication breakdowns could be construed as wilful if you don't know they have FASD, and further unhelpful punitive justice may be applied.

This is why a high percentage of those with FASD who enter the justice system are charged with crimes they did not commit – there is no doubt that our prison system includes many in this situation. Improved recognition of the signs, symptoms, and consequences of FASD are critical to prevent miscarriages of justice.

Communication FASD-style

Our 'KISSSSSS' (Keep it Short, Simple, Same, Slow, Specific & Show) pānui / flyer has helpful information and strategies for any front-facing professional communicating with people who have FASD.

Download it here.

The Banksia Hill Project was the first study in Australia to assess and diagnose young people in a youth custodial facility for Fetal Alcohol Spectrum Disorder. 

The research team led by Professor Carol Bower and Clinical Associate Professor Raewyn Mutch from the Telethon Kids Institute worked with more than 100 young people aged between 10-17 years incarcerated in Western Australia’s only youth detention facility, Banksia Hill Detention Centre.

Nine out of ten youth examined were found to have some form of neuro-disability and one in three was found to have FASD. 

More information

• The Banksia Hill Project - Findings and Recommendations

• Almost every young person in WA detention has a severe brain impairment | The Conversation

• Fetal alcohol spectrum disorder and youth justice: a prevalence study among young people sentenced to detention in Western Australia

Articles from Aotearoa NZ

• The criminalisation of individuals with FASD: is it necessary or effective?

Dr Valerie McGinn, Neuropsychologist, The FASD Centre, NZ (2021)

In this essay, the renowned Dr McGinn, clinical advisor for FASD-CAN, discusses the potential miscarriages of justice in criminalising a neurodisability.

• Best Practices for Justice: practitioner views on understanding and helping youth living with FASD

• Improving treatment and outcomes for young people with fetal alcohol spectrum disorder in the youth justice system: A social work-led response and practice framework.

Oatley V. and Gibbs, A. (2020) Aotearoa New Zealand Social Work 32(2) 5-16.

Young people with fetal alcohol spectrum disorder (FASD) in Aotearoa New Zealand are both primed for, and hindered within the youth justice (YJ) system. This research provides a fresh perspective on how social workers can take a lead role in ensuring young people with FASD receive neurodevelopmentally appropriate interventions both within the YJ system 

• A chapter in the Aotearoa Handbook of Criminology

Auckland University Press by Anita Gibbs (2021)

'Neurodisability and criminal justice: Time for a radical rethink' is essential reading for those within the criminal justice system.

• Views from the Bench: Fetal Alcohol Spectrum Disorder in the Courtroom

In N Novick Brown (ed), Evaluating Fetal Alcohol Spectrum Disorders in the Forensic Context 

In this book chapter Judge FitzGerald, a District and Youth court judge in Auckland (and our FASD-CAN patron), addresses FASD and the law in New Zealand. He identifies low levels of awareness, absence of prevalence studies, lack of diagnostic capacity and barriers to essential services and supports as the major features regarding FASD in the New Zealand justice context.  

• Psychological Assessment for Juvenile Courts – Haner D., McGinn V., Harris K. (2021)

In: Novick Brown N. (eds) Evaluating Fetal Alcohol Spectrum Disorders in the Forensic Context.
Springer, Cham

In this chapter Dr Valerie McGinn and two Canadian psychologists address the identification of offenders with FASD and education of  the courts in order to reduce involvement of youths with FASD, both as perpetrators of crime and as victims. Its chapter describes the processes used in Canada and New Zealand to evaluate young people who have committed crimes that were influenced by the neurodevelopmental deficits associated with FASD.

If you're an employer who has made the wonderful decision to help a neurodiverse individual into a job, Workbridge is a fantastic place to start your journey. 

As the largest New Zealand-owned employment agency for people with a disability, injury or illness (22 service centres nationwide), Workbridge fills up to 4000 job vacancies each year – at no charge to employers or jobseekers.

Services to employers include: 

Go to the Workbridge website.

CanFASD note ten points to consider when adjusting substance use treatment for those with FASD.

1. Reframe how you think about behaviour

Behaviours in people with FASD may relate to the brain-based differences they experience. For example, missing appointments, often losing or forgetting to bring materials, and missing medication doses can be related to memory impairment. Providing time management assistance (i.e. visual schedules) and creating a strong structure and routine can help.

2. Identify and screen for FASD

With high rates of substance use in this population, it’s important to know if the individual you are treating has FASD. This guide will give you the information you need to adopt the appropriate FASD screening tool for your setting.

3. Support entry into programming

Take the time to intentionally consider the barriers to eligibility and access that prevent people with FASD from starting or even seeking out your treatment program.

4. Adjust your treatment to the individual

Like all clients, a ‘one size fits all’ approach isn’t effective for people with FASD. Adjust your approach to fit the needs of each individual by considering their experiences, collaborating with external supports, and incorporating targeted interventions.

5. Support transitioning out of treatment

Make a plan to phase the individual out of treatment that will encourage them to maintain healthy outcomes. The plan should focus on their strengths, consider their experiences and needs, and collaborate with external supports and services.

6. Collaborate with other external services

People with FASD have complex needs and often access other heath, social, housing, legal, transportation, childcare, and cultural services. Consider the individual’s needs and facilitate referrals or connection with external services.

7. Integrate FASD prevention into treatment

The stigma surrounding substance use in pregnancy can be a barrier to accessing treatment. Engaging people in safe and respectful discussions about alcohol and substance use can be critical to ensuring they access and stay in treatment, and is an important factor in reducing alcohol use in pregnancy.

8. Provide continuing FASD training and education

Ensure each member that is involved in the care and treatment of people with FASD is well trained in how to best support these individuals. This includes those who administer treatment, as well as administrative and management personnel.

9. Use harm reduction, relational, and person-first approaches

Treatment should be culturally safe, strengths based, trauma-informed, sex- and gender-informed, and should promote interdependence. Recognise that there can be healthy solutions beyond abstinence. Consider adopting creative and relational approaches for those with FASD to better support their wellbeing.

10. Evaluate the program success

Make sure your program is accountable and responsive by monitoring and evaluating your program. This can help you to adjust things that aren’t working and to know what techniques may be more effective.

The National Organisation for Fetal Alcohol Spectrum Disorders Australia in Australia (NOFASD) have a free online course (November 2025) specifically designed for frontline AOD practice which will help you build confidence in recognising and supporting people who may be living with FASD and working with them more effectively according to their needs.

There are 17 modules which should take about 5 hours and you can do it at your own pace.

Find out more and register here.

CanFASD published a guide for addiction professionals entitled Moving Towards FASD-Informed Care In Substance Use Treatment in 2022. The guide provides evidence-based practices to support people with FASD who are in treatment for substance use.

Click here to download the new guide.

We are enormously grateful, as always, to CanFASD for enabling us to share this guide.

In April 2024, Hāpai te Hauora, the Māori Public Health Authority, published new guidelines detailing recommendations and principles required for the diagnosis of Fetal Alcohol Spectrum Disorder (FASD) in Aotearoa NZ.

From the introduction:

"These guidelines were developed by a tāngata tiriti and tāngata whenua project team at Hāpai te Hauora, supported by a steering group and multiple advisory groups, and funded by Te Whatu Ora. The approach to developing the guidelines included co-design with lived experience whānau and health professionals which highlighted the importance of Te Tiriti o Waitangi, Māori understandings of health and wellbeing, and whānau voice." 

Whānau voice was been central to the development of these guidelines. They were established within and are responsive to the distinct context of Aotearoa and as such, they must be grounded within a Te Tiriti o Waitangi framework.

FASD-CAN Patron, Judge Fitzgerald wrote the preface to the guidelines. It is a living document and will be subject to regular review after implementation has occurred and more evidence becomes available.

Changes 

One of the main differences between Aotearoa's new diagnostic guidelines and our previous 2016 guidelines is the number of neurodevelopmental domains which are assessed.

We now assess nine instead the previous ten domains.
Click here to access a handy graphic info sheet on the new nine development domains.

They are:

1. Cognition 

2. Communication 

3. Motor skills 

4. Memory 

5. Attention 

6. Executive function

7. Emotional and/or behavioural regulation

8. Literacy and/or numeracy 

9. Adaptive/social functioning 

The domain which is no longer being used is neuroanatomy and neurophysiology.

Click here to find out more and access the Aotearoa FASD Diagnostic guidelines. 

Fetal Alcohol Spectrum Disorder (FASD) is the globally accepted diagnostic term. Other historical terms such as Fetal Alcohol Syndrome (FAS), Partial FASD, Alcohol Related Neurodevelopmental Disorder (ARND) and Fetal Alcohol Effects (FAE) are no longer used except in some parts of the USA.

Other conditions can be mistaken for FASD and need to be considered in the differential diagnosis when there are signs, such as extremely low IQ. It's estimated that Attention Deficit Hyperactivity Disorder (ADHD) co-occurs in over 80% of cases of FASD and need to be diagnosed and treated separately.

Post-natal factors such as deprivation and trauma must be considered in the diagnostic formulation. These disadvantages can be alleviated through good care, while FASD remains lifelong and requires ongoing scaffolding and support.

An FASD diagnosis can be made where there is a history of confirmed alcohol exposure during pregnancy and  the child has significant impairments in three or more different areas of brain function. These are evaluated by standardised testing of nine neurodevelopmental domains (sometimes referred to as brain domains) and ruling out other causes for the difficulties found, including genetic disorders.

Each domain is assessed with direct testing using standardised tests. An impairment in a domain is assigned generally when the individual scores below the third percentile for their age (i.e. below 97% of their same-age peers) but there is flexibility for the clinician to use their professional judgement. 

In the 2024 FASD Diagnostic Guidelines for Aotearoa NZ, the nine neurodevelopmental domains assessed during an FASD diagnosis are cognition (IQ), motor skills, memory, communication, academic function, executive function (reasoning and consequential thinking), adaptive function (daily living skills) and emotional regulation.

Click here to access this downloadable graphic flyer explaining the nine domains.

Best practice for an FASD assessment is done by a multi-disciplinary team including a paediatrician, neuropsychologist, and ideally a speech therapist and occupational therapist. Few District Health Boards across New Zealand have assessment teams able to provide FASD assessments. If your client is unable to get a full assessment, they can request a neuro-developmental assessment by a paediatrician or a qualified neuropsychologist who is trained in diagnosing FASD. 

Assessors will need credible information about prenatal alcohol exposure. It is important that such information is sensitively gathered and used in a way that does not stigmatise the mother. Alcohol use is a societally promoted activity and around 50% of pregnancies in Aotearoa are unplanned – since pregnant women may not know they are pregnant for up to three months, it is not uncommon for their babies to be exposed to alcohol. But not every prenatally exposed child will have FASD. Each situation is unique and needs to be dealt with as such. 

Assessors will also benefit from having information regarding the child’s early developmental history, including early childhood and school reports and/or previous medical records. A diagnosis of FASD should not be ruled out unless or until a full neurodevelopmental assessment is completed. This may mean waiting until the child is older than seven years of age when executive function is mature enough to assess.

Prior to the development of the Aotearoa diagnostic guidelines, diagnosis in New Zealand was based on those developed in Australia, which in turn were based on Canada's clinical guidelines. Other countries around the world have their own – here are a few. 

Australia

The Australian guidelines were updated in May 2025 on the FASD Hub. The new update also assesses nine neurodevelopment domains, like our 2024 Diagnostic Guidelines. Find out more here. 

The NOFASD website has information on the new guidelines too which they have set out differently – click here to read. 

Canada

Read the Canadian diagnostic guidelines here with a more clinical paper here.

Italy

The Italian guidelines were updated at the end of 2024. Read here. 

Scotland

Read here. 

Often parents and professionals wonder about the value of getting a diagnosis and may be averse to a child being 'labelled' – but knowing the cause of their challenges can be transformational for both the person with FASD and their whānau. It allows parents, caregivers, and others to understand the child’s behaviour and needs better, and to know how to respond supportively and appropriately. 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.

When the assessment is completed, a report is written to explain the findings and describe the tamaiti's areas of strength and challenges. Best practice dictates that the report is written in simple and clear language and shared with caregivers, whānau and professionals, particularly educators. This enables everyone to be aware of where support and scaffolding is required.

The explanation to the child could be guided by the clinician, but it is ultimately up to the whānau as to how, when and what is communicated to the tamaiti – this will depend on the developmental level of the child and current situation of the whānau.

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 Disability Support Services (DSS) funding. Currently, people with FASD without an ID are ineligible for DSS funding.

Note that many people with FASD will also have other physical challenges and comorbidities as a result of prenatal alcohol exposure – for example, it's estimated that over 80% of those with FASD have co-occurring ADHD. 

Resources

• Here are two videos about the value of diagnosis which many have found valuable:

 – one with Reinier deSmit entitled My adult FASD diagnosis. Nothing changed. And everything changed.

 – one with Myles Himmelreich entitled Diagnosis: the start of a better understanding of FASD.

• Click here to read a 2024 study from Edinburgh into the views of young people with FASD who were asked about how they felt about getting a diagnosis. 

FASD diagnostic services available in Aotearoa

The map below of FASD diagnostic services in Aotearoa New Zealand represents information gathered by FASD-CAN in June 2023 (updated June 2024) 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]