Guidance
Fetal Alcohol Spectrum Disorder (FASD) and neurodiversity
All 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
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
Ngākau whakairo is the practice framework domain that covers rights, values and professional obligations. This is the heart of our work embedded within our practice.
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.
Prompts:
- 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.
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.
Whai mātauranga is the practice framework domain that focuses on the pursuit of knowledge and understanding. This includes the mana-enhancing paradigm, partnering to build understanding, and knowledge and research.
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.
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 – transcript of Risking It All video (DOCX 44 KB) (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
Skills and behaviours to support working with people living with FASD and neurodiversity
Whai pūkenga is the practice framework domain that covers the practice skills needed in our mahi – communicating, relational practice and developing understanding. All tamariki, rangatahi and whānau or family are entitled to intentional and skilful practice.
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).
Prompts:
- 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.
Specialist assessments
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
Other diagnoses
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.
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.