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Information and resources to support children and young people with fetal alcohol spectrum disorder (FASD) in education and care.
Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for severe neurodevelopmental impairments (generally seen as difficulties with physical activities, language, memory, learning and behaviour, including self-regulation) that result from brain damage caused by alcohol exposure before birth.
The effects of FASD may not be seen at birth, and may have different impacts in different situations. For example, linguistic abilities may appear “average” until they are expected to communicate about more complex subjects. People within the FASD spectrum will have damage to different parts of the brain which can cause structural and functional impairments which can be physical, cognitive and behavioural. Some people with FASD will have other birth defects such as heart and eye problems. Some people with FASD will have distinctive facial features, but most do not.
Every person within the FASD spectrum will have strengths and difficulties in different areas. This depends on the parts of the brain that have been most damaged by exposure to alcohol. There is no 'one size fits all' for people with FASD and not everyone will experience the same difficulties.
Although the use of ‘fetal’ may imply that it only relates to babies, FASD has lifelong consequences and can be diagnosed in children, young people and adults.
Where there are concerns about a child the family should be encouraged to seek help from a health professional.
FASD is often referred to as the ‘invisible disability’ as it often goes undetected. When children have no visible signs of alcohol exposure their problems may be wrongly blamed on poor parenting or on other disorders (for example Oppositional Defiant Disorder, ADHD or Autism). Assessment and diagnosis of FASD is important as it may provide answers for families and improve access to services that can improve life outcomes.
Assessment and diagnosis of FASD is undertaken by clinicians based on the Australian Guide to the Diagnosis of FASD and refers to FASD as a diagnostic term with two diagnostic sub categories:
- FASD with three sentinel facial features
- FASD with less than three sentinel facial features.
Key components of the FASD diagnostic assessment include documentation of:
- history – presenting concerns, obstetric, developmental, medical, mental health, behavioural, social
- birth defects – dysmorphic facial features, other major and minor birth defects
- adverse prenatal and postnatal exposures, including alcohol
- known medical conditions –including genetic syndromes and other disorders
Children and young people on the FASD spectrum may demonstrate significant differences in competencies across a range of areas. Teaching strategies need to be based on an ongoing assessment of the child’s skills, needs, and abilities, not assumptions related to age.
It is important to note that only approximately 30% of people with a FASD diagnosis have an intellectual disability, therefore adjustments to the curriculum may not be necessary or sufficient on their own to achieve the best educational outcome. Other adjustments may be environmental, and/or working on the underlying barrier to learning (eg difficulty with emotional regulation).
Learning difficulties that children and young people with FASD experience include:
- understanding cause and effect, this impacts on interactions and provides challenges for building strong social relationships and incidence of risk-taking behaviour with serious implications on health and wellbeing
- speech, language and communication delays/disorders including verbosity, difficulty comprehending, poor social cognition and communication skills, and difficulty using sophisticated language in social contexts
- cognitive difficulties, including poor short-term memory and poor concentration
- difficulty understanding mathematical concepts, such as time and money
- frontal lobe damage to the brain associated with FASD, results in impaired executive functioning leading to struggles such as impaired ability to organise, plan, understand consequences, maintain and shift attention, and process and memorise data.
It is important that education and care services understand the strengths and difficulties of a child or young person with FASD and work in partnership with the family.
There is a growing research and knowledge base about the effects of antenatal alcohol exposure on brain structure and function, including memory, cognition, executive functioning, gross and fine motor control, sensory processing, language and behaviour. While the barriers and challenges to learning are many for children and young people living with FASD, it is important to frame these challenges in a strength-based educational context. Many children with FASD have learning strengths around literacy and practical subjects, such as visual arts, performing arts, sport and technologies.
Children and young people with FASD benefit from targeted learning strategies. They may require explicit instruction to acquire skills that typically developing children would learn through observation or generalisation, often related to working memory and attention issues.
This practical education resource has been developed by the Marulu Unit and it's partners to support school leaders, teachers, Aboriginal educators and the broader school community to recognise, understand and work effectively with students living with FASD in schools. While the resource was originally written for teachers and school communities in the Kimberley region of Western Australia, the materials are relevant for all school communities across Australia meeting the complex needs of students with this challenging and often difficult to diagnose set of disorders.
FASD Hub Australia has a range of information available on managing FASD including their ‘what teachers can do’ webpage which includes resources and videos.
NOFASD have a free webinar that will assist education and care staff to understand the challenges that children with FASD face in their learning journey including
- outlining what FASD is
- helping to respond to a child with FASD
- providing strategies to support the child in the classroom
- advising where to go for more assistance and information.
Many children and young people on the FASD spectrum have low levels of interoception, which means they are unable to understand or connect with their bodies in ways that would enable them to self-regulate. It is important to integrate the teaching of interoception activities to develop interoceptive awareness.
Refer to the interoception web page for interoception information and resources.
Children and young people with FASD may show signs of being hyper-sensitive (feeling things too much) or hypo-sensitive (not feeling things enough) to the senses of touch, taste, smell, sight and sound. They may be so focused on what they hear, see or feel on their skin that they can’t focus on other things. They they may shut down or act out as they try to stop the thing that is bothering them.
The sensory overview support plan HSP431 (DOC 389KB) should be completed by the education and care service in consultation with the parents and child or young person. The sensory overview provides a detailed understanding of the individual sensory issues and assists in developing strategies to minimise sensory overload in the education or care setting.
The regulation scale HSP432 (DOC 182KB) is a tool that can be used for any child or young person to identify what is happening around them that is impacting on their mood change, what signals their body is giving them, and ways to respond to their body’s signals that will help them manage the change in mood.
The regulation scale guide HSP432A supports the development of the regulation scale.
The child or young person should be involved as much as possible in developing the scale, with input from parents and staff to support them.
The scale can evolve and change over time as the child develops better interoceptive awareness and expands their vocabulary (non-verbal/verbal). This scale is designed to be used in conjunction with interoception activities so the child is working towards meaningful development of interoception skills.
Interoception is the foundation for developing emotional regulation skills and some children will require explicit teaching to develop these. Some children (especially those who have experienced trauma and/or neglect) struggle to manage mood changes which may be associated with a minor increase in stress levels (new learning, trying something different). For these children, minor stress may induce uncomfortable feelings which trigger a ‘flight, fight, freeze’ response. These children require support to differentiate between feeling slightly challenged/minor discomfort and feeling unsafe/in danger so they can respond differently.
Some examples of completed regulation scales include:
- HSP432 externalising behaviour (PDF 354KB)
- HSP432 internalising behaviour (PDF 130KB)
- HSP432 symbols and reduced language (PDF 170KB)
- HSP432 year 3 boy (PDF 159KB)
Traditional behaviour management focuses on what to do after behaviour has occurred, but does not determine the purpose of the behaviour.
The behaviour can often be prevented by making modifications to the environment, people, places, time or activities and teaching the child or young person a more appropriate way to get their message across.
It is important to determine the reason for the behaviour before we can try to prevent the occurrence.
This may include:
- identifying dangerous, damaging and disruptive behaviours; and which behaviours are just annoying or irritating to others
- investigating what triggers the behaviour, when and where the behaviour is most likely and least likely to occur
- looking at what happens after the behaviour
By using this information we can identify the purpose of the behaviour and teach appropriate alternative behaviours and new skills.
The HSP433 understanding behaviour template HSP4333 (456KB) is a useful tool to assist in determining the reason a behaviour is occurring and to plan and implement a replacement behaviour. This worksheet is used for a single behaviour and works most effectively when education staff, families and the child or young person work together to develop.
The template includes a most likely/least likely table that can be used to identify possible triggers for the behaviour of concern. Documenting what is happening when the behaviour is most likely to occur (place, people, time and activity) and comparing it to times when the behaviour is least likely to occur. It is equally as important to identify when the behaviour DOESN’T happen. This form is used to gather additional information that can provide useful clues in identifying the purpose of the behaviour. The information concerning least likely times for the behaviour also signals possibilities for the ideal teaching environment best suited to that young person.
Wellness, stress and distress questionnaire (WSDQ)
The wellness, stress and distress questionnaire (WSDQ) HSP426 (XLSX 264KB) is a brief emotional and behavioural screening questionnaire for children and young people. The tool can capture the perspective of children and young people and their teachers.
The 25 items in the WSDQ comprise 5 scales of 5 items each. The scales include:
- emotional symptoms subscale
- conduct problems subscale
- hyperactivity/inattention subscale
- peer relationships problem subscale
- prosocial behaviour subscale.
The WSDQ can be used for various purposes, including clinical assessment, evaluation of outcomes, research and screening.
Health support agreement
A health support agreement HSP120 (DOC 243KB) and safety and risk management plan HSP121 (DOC 147KB) may be completed where a parent indicates their child requires additional support and assistance. There does not need to be a care plan completed by a health professional in place. The support agreement is completed by the parent and education or care service to document specific risk minimisation strategies, individualised management and treatment for the child in the context of the education or care service.
The guide to planning health support – HSP125 can assist in the development of the health support agreement by prompting through a series of questions and considerations.
The health support agreement should clearly identify cultural, spiritual and language needs.
Once the strengths and needs of a child on the FASD spectrum are determined, through formal and informal assessment, strategies can be developed to support their needs. Documenting the modifications, accommodations and support strategies is important for ensuring understanding and facilitating successful placements, transitions, emotional regulation and academic success
Educational adjustments are designed to support children and young people on an individualised basis. Adjustments should be determined by the parents and education and care service and documented in the support agreement.
The Department for Education has developed an interoception curriculum that can help children and young people with anxiety improve their emotional awareness and self-regulation. Refer to the interoception page for interoception information and resources.
That National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD) is an independent not-for-profit charitable organisation funded by the Australian Government Department of Health. They are the national peak organisation representing the interests of individuals and families living with Fetal Alcohol Spectrum Disorders (FASD). NOFASD also operates a National help line for families 1800 860 613.
FASD Australia Hub is a website developed by an alliance of organisations working to provide a 'one stop shop' for information, tools and resources that are current and evidence based.
The Russell Family Fetal Alcohol Disorders Association runs online support groups as well as face-to-face support groups across Australia.
The Marulu Knowledge Hub has a range of resources designed to support families, communities and carers impacted by FASD throughout different phases of their life.
- HSP421 Interoception support plan (DOC 170KB)
- HSP426 Wellness, stress and distress questionnaire (WSDQ) (XLSX 264KB)
- HSP431 sensory overview support plan (DOC 389KB)
- HSP432 Regulation scale (DOC 182KB)
- HSP432A Regulation scale guide (PDF 503KB)
- HSP433 Understanding behaviour template (PDF 358KB)
Health support agreement
- HSP120 Health support agreement (DOC 243KB)
- HSP121 Safety and risk management plan (DOC 147KB)
- HSP122 Offsite safety and risk management plan (DOC 148KB)
Planning and management tools
- Ready to learn kit (PDF 6936KB)
- Interoception guide (PDF 610KB)
- HSP422 Interoception activity plan (PDF 74KB)
- HSP423 Interoception personal best tracking sheet (PDF 116KB)
- Interoception small group session structure (PDF 84KB)
- Interoception in the Australian Curriculum (PDF 150KB)
- Marulu strategy
- FASD Australia Hub
- HSP125 Guide to health support planning (DOC 87KB)
Disability and complex needs team
Phone: 8226 0515
Email: education.health [at] sa.gov.au