Date
24 July 2024

Understanding FASD

FASD is a lifelong condition that affects brain structures, processes and functioning, and emotional regulation. Students with FASD can have strong visual memories, good verbal fluency, and high energy levels.

Explaining FASD

FASD is an umbrella term used to describe the lifelong neurodevelopmental and physical impairments that can result when the prenatal brain is exposed to alcohol.

Te Whare o Oro

Te Whare o Oro offers us a way to understand neurodiversity from a Māori worldview. It approaches brain health in a holistic way, placing emphasis on mātauranga Māori or Māori knowledge. 

It uses the metaphor of the whare tūpuna, the ancestral meeting house, and incorporates Te Whare Tapa Whā, a Māori model of health and wellbeing developed by Sir Mason Durie in 1985.

Te Whare o Oro and FASD

The model was extended to FASD through adding the concept of heke or rafters. These represent ways to respond to the impact of trauma in the pou or main posts of the whare. 

  • Ngā heke pūtahi (pūtahi, to join or meet). These heke guide teachers and practitioners supporting tamaiti and whānau affected by FASD. 
  • Ngā heke pāhake (pāhake, to mature, grow up, become adult). These heke guide whānau raising a tamaiti who experiences FASD.

Ngā heke pūtahi

  • Pūtake (purpose): Understanding the source of the issue.
  • Ūkaipō (home, homeland): The source of sustenance.
  • Tipu tonu ake (continued growth and development). A lifelong focus and intervening early.
  • Aronga (focus): A focused approach to learning and understanding.
  • Hononga (connection): Developing strong and clear relationships across systems of care.
  • Ihi (essential force): Accessing the transformative nature of ihi held within te ao Māori.

Ngā heke pāhake

  • Poutama (ladder pattern in traditional Māori art): Creating a pathway to knowledge.
  • Āta whakarongo (listen carefully and with intent): Learning and observing with all of our senses.
  • Huritao (reflection): Creating the ability to reflect on and learn social and emotion regulation skills.
  • Aroha: Caring for ourselves and our whānau.
  • Kaiwhakatere (navigator): Being a navigator.
  • Ea (fulfil, satisfaction): Creating a sense of achievement and satisfaction.

For more information and resources:

Te Whare o Oro – Te Atawhai o Te Ao (scroll to bottom of the page).

Understand the impacts of FASD

Having a good understanding of FASD and how it impacts individuals is key to supporting students with FASD. This video explains FASD and its impact on the brain and behaviour.

For more detailed information watch the 47 minute recorded webinar from FASD-CAN:

What works in schools for tamariki and rangatahi Māori with FASD.

Primary characteristics of FASD

Each student with FASD is unique but some common characteristics are:

  • good verbal skills and a friendly outgoing nature 
  • impulsivity and dysmaturity 
  • over or under sensitivity to stimuli
  • slower processing and learning pace
  • difficulty with planning, memory and emotional regulation
  • difficulty with abstracting and predicting.

Additional challenges

Students can develop defensive behaviours when they receive limited understanding, support, or adaptations for the challenges they face. These behaviours develop over time as a result of frustration and repeated failure. They can lead to depression and mental health issues, and contribute to students disengaging from school and learning. 

Additional challenges can include:

  • feeling overwhelmed
  • anxiety
  • frustration
  • depression
  • social problems
  • responses that appear misaligned with situations, contexts and expectations. For example, laughing during sad occasions.
  • feeling disconnected from school, learning and peers.

Many characteristics associated with FASD are common to other conditions such as ASD or ADHD and misdiagnosis is common.

Source: Adapted from Fetal Alcohol Spectrum Disorder – Care Action Network.

Diagnosis of FASD

Te Whatu Ora estimates that up to 3,000 Kiwi babies are born with FASD every year. FASD is diagnosed in New Zealand using the Canadian diagnostic guidelines. Diagnosis is valuable because early interventions are a key protective factor for good life outcomes.

Only 5% of individuals show facial features, which occur if exposure is early in pregnancy when the face is forming. Individuals without these facial features are no less impacted by effects of alcohol on their brain development.

Other neurological conditions such as ADHD, behaviour disorders and Oppositional defiant disorder can be mistaken for FASD.

An FASD diagnosis assessment and diagnosis is complex, and is undertaken by a specifically trained clinical team that includes a neuropsychologist. There is a shortage of specialists operating in New Zealand and diagnosis can be expensive to obtain or inaccessible.

These factors, coupled with the stigma associated with a FASD diagnosis, mean that many students with FASD remain undiagnosed or misdiagnosed. It is estimated that only about 5% of people with FASD will ever receive a formal diagnosis.

Source: Adapted from Understanding FASD, FASD–CAN

The role of the teacher and school

The sensitive nature of the diagnosis means conversations about needs should always be referred through school leaders and specialists such as the Learning Support leader or SENCo.

Influences on learning

Recognising the impact on the brain allows teachers to respond to students with FASD with compassion and informed understanding.

Memory

Memory is a neurological function that does not work well in children with FASD. They cannot make a decision about “next time” based on “what happened last time” and there are limits to how well they can process information.

Processing information

Thought processes of a learner with FASD can be highly variable. There may be gaps in connections, and also clusters of connections leading to areas of strength.

Children and young people with FASD often experience difficulties dealing with information. They can find it hard to:

  • apply specific learning to new experiences or situations and perceive similarities and differences
  • see patterns, predict events, or make judgements
  • remember
  • translate what they hear (instructions) into actions; thoughts and feelings into words; reading into speaking.

Planning and completing tasks

Executive functioning is the ability to plan and complete a task. Students with FASD may need support to maintain or shift attention, organise, plan, process and memorise information, and understand consequences.

Cognitive fatigue

Learners with FASD can often tire easily. Impacts to the brain mean they have to work harder and utilise more brain areas to concentrate.

Students experience cognitive fatigue when a task is overwhelming or when expectations are set too high. Cognitive fatigue accumulates. Performance may deteriorate as the day progresses, or towards the end of the school week or term.

The student's ability to do a task or understand a concept may be inconsistent from day to day and time to time, depending on factors like fatigue and level of challenge. This can be confusing for teachers who may interpret the inconsistency as defiance or laziness.

Without appropriate support and breaks, learners experiencing cognitive fatigue can exhibit:

  • learning difficulties
  • inconsistent performance across days and times
  • becoming muddled or physically ill
  • lack of motivation
  • mood swings
  • distress.

Social and emotional skills

Behavioural patterns of people with FASD are consistently inconsistent. As a result of their brain injury, students may be hyperactive, easily distracted, and impulsive.

A learner with FASD may experience difficulty:

  • understanding consequences
  • generalising behaviour from one setting to another
  • understanding what is fair – they often work within a rigid egocentric notion of fairness
  • understanding personal boundaries and ownership
  • perceiving social cues and rules, and the emotions of other people
  • making and keeping friends – they might be easily led by others.

Confabulation vs lying

Confabulation is not lying. Damage to the function of the frontal lobes of the brain means that a child or young person with FASD may make things up that are not true. When they are confused or have forgotten what happened, they may say something that suits the situation or they think is expected of them. They can have difficulty basing what they say on reality and checking it against evidence.

Useful resources

Website

FASD Care Action Network

FASD Care Action Network supports caregivers, whānau and individuals. They provide a range of education resources to support people with FASD across Aotearoa.

Publisher: FASD – CAN

Website

Engaging all learners: Supporting students with fetal alcohol spectrum disorders

Three short modules with accompanying videos explaining how alcohol affects the developing brain. Includes additional information on brain structure and brain function, and the brain and emotional regulation.

Publisher: The Edmonton Regional Learning Consortium (ERLC)

Website

Te Pou

A New Zealand site with resources and an online course to support people to recognise and respond to FASD.

Publisher: Te Pou

Website

Know FASD: Alcohol in utero knowledge base

Short descriptions of how FASD may present in children at different ages. Information is expanded on in a supporting wiki.

Publisher: University of Alberta Educational Psychology

Website

Attitude videos

These Attitude documentaries provide a window into the lives of people with FASD:
- Justice for FASD
- My Perfect Family: The Cookie Project
- You are never going to believe this…
- Crips In Cars: Willie & Darya

Publisher: Attitude (NZ)

Next steps

Return to the guide “Fetal alcohol spectrum disorder and learning”

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