Fetal Alcohol Spectrum Disorder (FASD) and neurodiversityAll tamariki, rangatahi, whānau or families have mana ahua ake – uniqueness and potential within their collective structure. People living with FASD and neurodiversity have rights and their own identity and strengths, and can have fulfilling lives.
Mā te kaha o te kaha, te aratohu me te whakairo nui, ka tupu te tipu me te whakatutuki i te hunga ki te FASD.
With shared strength, guidance and wisdom, those with FASD can grow and achieve.
This whakataukī is used with the permission of FASD-CAN.
What is neurodiversity
Neurodiverse and neurodiversity refers to the diversity of all people and the way they interact with and experience the world. It is an umbrella term for neurological or development conditions such as FASD, autism, attention deficit, learning and intellectual disabilities, and traumatic brain injury.
People living with neurodiversity may benefit from the practices outlined in this guidance, particularly if the neurodiversity is related to alcohol or harmful substances.
What is Fetal Alcohol Spectrum Disorder
Fetal Alcohol Spectrum Disorder (FASD) is the diagnostic term used to describe significant and lifelong impacts on the brain and body of unborn pēpi (babies) exposed to alcohol during pregnancy. This happens when alcohol enters through the whenua (placenta) and changes the brain architecture of an unborn pēpi. These differences cause the person with FASD to respond to the world differently and experience brain-based challenges and to require brain-based approaches to their learning and growth, including their social, emotional and cognitive development.
Brain-based refers to how the brain learns and includes factors like cognitive development – how people learn as they age, grow and mature socially, emotionally and cognitively.
Each person living with FASD will have their own unique identity, strengths, talents and potential. There are common traits, however.
Support tamariki and rangatahi with FASD
FASD affects not only the person with FASD but everyone in their whānau or family, community and broader social environments. Te Ao Māori concepts and Pacific world views reinforce the centrality of whānau and families to the oranga (wellbeing) of tamariki, rangatahi and the collective whole, which is why we use the term people 'living with FASD'.
Upholding the rights and mana of people living with FASD and neurodiversity
At the heart of our work with all disabled people and tāngata whaikaha, and their whānau or families, is the recognition of their inherent rights and mana. We strive to see the rights of all people with neurodiversity realised, and to practise in accordance with our professional values and ethics.
Staff resource: Upholding the rights and mana of disabled people and tāngata whaikaha Māori
Our professional obligation is to understand and support those who experience the worst effects of alcohol and substance use. Being mindful of any personal biases we may have helps to create environments where parents, whānau and families feel able to reach out for help.
- What experiences have I had of alcohol and substance use that could influence my practice when working with tamariki, rangatahi and other people living with FASD? Do I have any biases and, if so, how can these be addressed?
- What personal experience of whaikaha (disability) do I have and how is this influencing my practice? How am I exploring my own practices and communication with tamariki, rangatahi and other people living with FASD and neurodiversity?
We also have a professional mandate and ethical responsibility to advocate for assessment, services and responses for tamariki, rangatahi and whānau or family experiencing alcohol-related harm or FASD.
Paper: Improving treatment and outcomes for young people with FASD in the youth justice system | Aotearoa New Zealand Social Work
Building understanding of FASD to support our mahi
Mātauranga (knowledge) helps us to understand the social context that leads to FASD and to be aware of the high prevalence of FASD and neurodiversity among the tamariki, rangatahi, whānau and families we support.
Oranga of tamariki and rangatahi Māori
For Māori, waipiro (alcohol) was introduced with the colonisation of Aotearoa New Zealand. Historical accounts show that Māori were aware of the harms early on, and there are many accounts of rangatira taking steps to avert alcohol-related harm to their people, including an 1874 petition by Haimona Te Aoterangi and 167 other rangatira presented to the House of Representatives.
Petition of Haimona Te Aoterangi, and 167 others | Papers Past
The intentional dismantling of traditional Māori society has placed Māori at much greater risk of prenatal alcohol exposure and subsequent FASD. There has been some important work done, through te Tiriti o Waitangi processes, to draw attention to the disproportionate impact of FASD on Māori.
FASD and the Waitangi Tribunal | FASD-CAN
For whānau Māori, FASD is a complex whānau issue that requires holistic consideration of the whānau member with FASD as well as the rest of the whānau. We seek advice from kairaranga ā-whānau and refer to Te Toka Tūmoana.
Staff resource: Whānau Hauā – Whai mātauranga in relational and inclusive disability practice
Working with Māori: Te Toka Tūmoana
Social context of our alcohol culture and FASD
We live in a society with a strongly promoted alcohol culture. And yet, while drinking is an accepted part of our lives and often encouraged, it's socially punishing to be caught with the negative effects of alcohol use, such as drink-driving, having a child with FASD, or being addicted to alcohol and other harmful substances.
Alcohol exposure during pregnancy is common in Aotearoa New Zealand. Around half of all pregnancies are unplanned and often an unborn pēpi (baby) is exposed to alcohol before the mother knows she is pregnant. The Growing Up in NZ study (2015) found that, of 6800 pregnancies, 71% were prenatally exposed to alcohol and while most of these pregnancies will not lead to FASD, some pēpi will be born FASD-affected.
Being alert to FASD within care and youth justice
Except for the few people with characteristic FASD facial features, FASD is largely an invisible disability and often undetected.
In Taking Action on Fetal Alcohol Spectrum Disorder: 2016–2019, the Ministry of Health estimates that up to 50% of tamariki and rangatahi involved with the care system could be living with FASD. When their support needs are not well met, these tamariki and rangatahi are at risk of out-of-home care and poor life outcomes. Conversely, if they are supported in ways that recognise their strengths and brain-based challenges, they can enjoy successful lives.
Rangatahi with FASD and neurodiversity are significantly more likely to be involved with youth justice than rangatahi without neurodiversity. Understanding FASD and neurodiversity helps us support these rangatahi. For example, a person with FASD may admit to something they didn't do if they don't understand the situation they are in or are under pressure. This example highlights the critical importance of the rights-based approach to our FASD practice.
Staff resource: Upholding the rights and mana of disabled people and tāngata whaikaha Māori
FASD and justice videos | Telethon Kids Institute
Building understanding and providing the right support
A firm diagnosis of FASD can be difficult to get in Aotearoa New Zealand but its importance cannot be understated. Not having an accurate diagnosis, or having a misdiagnosis, can result in inappropriate responses to and interventions with tamariki and rangatahi and missing the risk of secondary factors, such as unstable care arrangements, exclusion from education, mental health and substance abuse problems, offending and contact with criminal justice.
Diagnosis can also be seen as protective:
- It is protective of future pregnancies as information about FASD is spread within the family, whānau, hapū, iwi, family group and communities.
- It is also protective of the person with FASD and their whānau or family relationships and oranga, as the right understanding and supports can be put in place. This includes our mahi to help tamariki, rangatahi, whānau and families to be successful while they are involved with our services and beyond.
Video – FASD: the basics | Vimeo
Video – FASD: a mother's story | YouTube – transcript of mother's story video (DOCX 19 KB)
Video – Disordered: The shame of how New Zealand treats people with FASD | Stuff
Enabling healthy pregnancies
Some women will not know they are putting their pēpi (baby) at risk of brain damage if they are drinking alcohol during pregnancy. Many men do not realise that when they drink during their partner's pregnancy, their partner is more likely to drink. They may receive mixed information from their friends, family, whānau, hapū, family group, community and professionals about the potential harms of alcohol use in pregnancy. However, no amount of alcohol in pregnancy is known to be safe.
Our role in enabling healthy pregnancies depends on our relationship with the woman, her partner and their whānau or family, and where they are in their own personal journey. For example:
- if a woman is in or has previously been in our care, we have a particular duty to support her wellbeing, along with the wellbeing of an unborn pēpi
- if parents have other children in our care, we want to support any future pregnancies.
We can support the woman (and her partner) to consider their alcohol or substance use by building a connection and relationship and by sharing information, including the resources below.
Guidance on strengthening our response to unborn and newborn pēpi helps us to understand the unique complexities of these situations and provide effective support. Key practice considerations are:
- upholding rights
- early engagement with the right people
- working with our Health partners
- keeping a focus on pēpi and whānau or family in our assessment
- making decisions with family, whānau, hapū and iwi.
Practice considerations – Strengthening our response to unborn and newborn pēpi
Pregnancy and alcohol | Health Navigator NZ
Risking It All: True stories, FASD prevention for a brighter future | YouTube (we can make this resource available to parents or wider whānau or family, and interested professionals, if we think they are ready and wouldn't find it stigmatising)
Alcohol.org.nz (tools that help with understanding how a person is drinking)
Features of FASD and neuro-informed practice
We recognise that FASD and neurodiversity are common among the tamariki, rangatahi, whānau and families we work with, and that they will need support.
To do this, we:
- know about and understand FASD and neurodiversity – while these disabilities may be invisible, tamariki and rangatahi living with FASD and neurodiversity need to be identified and may need help throughout their lives
- recognise that everyone has mana – either acquired through whakapapa or achieved by personal endeavours – and it is a source of strength for tamariki, rangatahi, whānau and families living with FASD or neurodiversity.
We work with whānau or family to understand how the safety of unborn pēpi, and the oranga of te tamaiti or rangatahi with FASD or neurodiversity is being protected, enhanced and sustained.
To do this, we:
- start from a place of understanding that oranga is different for all whānau and families, and within whānau and families, and by recognising their oranga aspirations
- share knowledge on how to prevent or reduce the risks of pregnancies being exposed to alcohol and harmful substances, and support whānau or family to be strong and protective of whakapapa (genealogy and identity)
- explore with whānau or family their views on alcohol, and how these might shape their experience – we are aware of our own values, beliefs and attitudes towards alcohol and other harmful substances so we can help whānau or family
- work to understand how the different people within the family, whānau and whanaungatanga network protect, support and sustain tamariki, rangatahi and whānau or family, and their oranga
- explore concerns with whānau or family to develop a shared understanding of the oranga needs of te tamaiti or rangatahi
- use our practice models and, if needed, seek advice from kairaranga ā-whānau and Pacific cultural advisors to help us relate with whānau or family by drawing on their cultural expertise and community networks.
We work with the whānau or family to understand their natural, physical and social environments and how these impact on their oranga, autonomy and participation. We advocate for the rights of tamariki, rangatahi, whānau and families living with FASD, and support them to identify and address barriers that prevent full inclusion.
To do this, we:
- recognise the challenge of caring for and supporting tamariki and rangatahi with FASD and neurodiversity – showing manaaki (care and support) to the mātua (parents) and caregivers is important
- recognise whānau, whakapapa and hāpori as a source of strength, and mobilise and support the protective capacities of tamariki and rangatahi Māori, and whānau
- work with whānau or family to increase support networks to provide a nurturing environment for te tamaiti or rangatahi, and to reduce isolation and support the wellbeing of the mātua or caregivers
- seek advice from cultural and disability advisors about how to support whānau or family to broaden their network of support and resources
- undertake early and close collaboration with other professionals and community or cultural supports to build a shared understanding about how we work together to support tamariki and rangatahi, and their whānau or family
- advocate for tamariki, rangatahi and whānau or family, to enable them to access services that will support them to reach their potential.
We build relationships with tamariki and rangatahi and recognise and promote their unique strengths and abilities. We use brain-based approaches that recognise learning challenges and needs and support them to trust that the informed people around them will help them to get things right.
To do this, we:
- adapt our communication so we can successfully engage and build trusting relationships
- understand that learning is disrupted, and that behaviour can be the result of a brain overwhelmed by its environment
- see behaviour as symptoms of FASD, and respond calmly to disruptive behaviour
- support whānau, family or caregivers to create environments and routines where tamariki and rangatahi can feel safe, connected and supported
- recognise that te tamaiti or rangatahi is likely to need repeated and ongoing support with the challenges they face everyday
- seek expert advice about developmental, disability and FASD-specific needs and ways of working to promote tamariki, rangatahi and whānau or family oranga.
We support the uniqueness of tamariki, rangatahi and whānau or family living with FASD and neurodiversity, and their rights and aspirations. We ensure their voice and views inform our assessments, plans and responses.
To do this, we:
- value the narrative that parents, whānau or family hold about their experience of living with FASD and neurodiversity
- recognise each person's right to be themselves and to make choices and have autonomy
- support tamariki, rangatahi and whānau or family to find answers that are right for them
- enable whānau or family to participate fully by sharing information with them
- preference the views of tamariki, rangatahi and whānau or family even when they are not present and uphold the mana of the whānau or family in any forums we are in
- ensure hui ā-whānau and family group conferences are used to engage family, whānau, hapū, iwi and family groups so they can exchange information, and seek whānau or family solutions and resources.
Skills and behaviours to support working with people living with FASD and neurodiversity
Skills and behaviours that help us understand need and support tamariki, rangatahi, whānau and families living with FASD and neurodiversity are an essential component of our skills kete (basket).
- What do I know about brain function? Where are my knowledge gaps and who can help me fill those gaps?
- How am I recognising the strengths of tamariki, rangatahi and their whānau or family and supporting them to build on these strengths and develop their potential?
- How am I modifying my own practice style, approach, language and application of tools and resources to the unique needs of the person I am working with?
- How can I help to create a team approach to supporting tamariki and rangatahi with FASD and neurodiversity to learn and grow?
Support whānau or family to understand what’s going on
If te tamaiti or rangatahi has behavioural challenges that aren't being managed by usual parenting and school approaches, whānau, families and their supporters will want to understand why. Determining whether someone has FASD or a neuro-disability can start the pathway to better supporting their needs and making things work.
Relationship is an important part of practice, and we want to convey manaaki (support and care) and respect for the mana of whānau and families in all our conversations. We also recognise that alcohol and harmful substance use during pregnancy can be a particularly sensitive topic and needs to be managed respectfully. We include the whānau or families of tamariki and rangatahi, including for those in assessment processes, and support them to understand the outcomes of an assessment – this is critical to informed, whānau-led decision-making.
Determining if te tamaiti or rangatahi has FASD or another neuro-disability requires a specialised assessment. If a specialised assessment is required, our role in organising the assessment will depend on why we are involved with te tamaiti or rangatahi and their whānau or family, and our obligations. We seek advice from our supervisor, Regional Disability Advisor or Clinical Specialist as required.
We can help te tamaiti or rangatahi and their whānau or family with their understanding of the diagnosis and support them on their knowledge journeys and with any grief they may be feeling.
If we think neuro-disability is a possibility, we ask if this has been considered and check if a specialist assessment has been completed:
- When an existing assessment is available, we may need advice from a Regional Disability Advisor or Clinical Specialist to clarify terminology and any recommendations that were made by the assessor and how these can be incorporated into plans.
- When a specialist assessment has not been completed, or the needs of te tamaiti or rangatahi require clarification, we may need to seek a specialist assessment. Specialist assessors will need information about prenatal exposure to alcohol and other harmful substances. If we are involved with gathering this information, we ensure that it is not used in ways that could stigmatise the mother.
Working with disability and learning supports and ACC
An FASD assessment identifies strengths and talents and assesses the 10 brain domains, which can help us understand how any impairments could be remediated or accommodated (for example, speech-language therapy for a language impairment or an Occupational Therapist for executive functioning issues or affect regulation difficulties). This would help te tamaiti or rangatahi build on their strengths and talents.
Ten brain domains | FASD Coalition (PDF 120KB)
People diagnosed with FASD usually have several other diagnoses. For example, 60% to 80% of people with FASD have attention deficit hyperactivity disorder (ADHD), often as part of the FASD, while oppositional defiant disorder (ODD) and conduct disorder may be secondary conditions.
Explaining and understanding the diagnosis
Understanding the cause of the difficulties can be transformational for te tamaiti or rangatahi and their whānau or family. It can:
- empower them to avoid or reduce the risk of future alcohol-affected births
- be the start of parents, whānau or family, caregivers and others getting to know how to support te tamaiti or rangatahi
- empower te tamaiti or rangatahi to know why life is so tough, and what can be done to make things better.
How to explain an FASD diagnosis to your child | Canada FASD Research Network
Support tamariki, rangatahi and whānau and families with their knowledge journeys
Because learning about FASD is relatively new in Aotearoa New Zealand, tamariki, rangatahi, whānau and families may initially feel isolated. Typically, they will have received advice that isn't brain based or whānau or family centred about how their tamaiti or rangatahi should behave and be supported.
To support the start of a healing process and empower whānau or families, we:
- listen to each whānau or family's unique stories
- acknowledge their strengths and challenges, and the stress and fatigue they may be experiencing
- let them know that we'll be learning together and working out what we need to do
- respect their mana and are careful with our language
- encourage self-care in ways that suit them
- actively help them to access information and support
- bring schools and professionals together with FASD-informed practice.
Ko wai au? Who am I? A diagnosis will not give us a full understanding of te tamaiti or rangatahi and their whānau or family and the issues, challenges or opportunities they are facing. Seek to understand from te tamaiti or rangatahi and their whānau or family about their experience of FASD and disability and how they think it impacts on the oranga of the individual and whānau as a collective. Help them to explore learning and support options and see the uniqueness and potential of the person with FASD or neuro-disability.
Resources for whānau or family
FASD – Fetal Alcohol Spectrum Disorder Care Action Network
FASD: strategies not solutions | Edmonton Fetal Alcohol Network (PDF 2.3 MB)
Video – FASD support for caregivers (to help caregivers reflect on the principles of caregiver and whānau support) – transcript of support for caregivers video (DOCX 30 KB)
Support tamariki with FASD
Strengths and impairments vary, depending on how the brain of te tamaiti or rangatahi has been affected and any secondary issues. However, there are common traits and support needs that we need to understand.
Develop FASD-informed plans
We make sure that any plans (for example, court plans, family group conference plans, the All About Me plan, caregiver support plan) take FASD or neurodiversity into account and reflect the importance of collaboration – with whānau or family, and with schools and other agencies that support te tamaiti or rangatahi.
Effective FASD-informed supports may not be readily available, so we advocate for tamariki, rangatahi and whānau or family, and work creatively with our partners to design and implement good responses to needs.
Fetal alcohol spectrum disorder and learning | Inclusive Education
Whakamana te tamaiti or rangatahi through advocacy
Advocacy for parents and whānau or family
Video – Success for children and young people with FASD | YouTube – transcript for success with FASD video (DOCX 30 KB)
Video – Dr McGinn provides further insight into FASD | YouTube – transcript for Dr McGinn video (DOCX 27 KB)
Some tamariki who receive a diagnosis of FASD will also receive a diagnosis of intellectual disability and be eligible for disability support at home through NASC and Whaikaha Ministry for Disabled People.
Working with disability and learning supports and ACC