Fetal Alcohol Spectrum Disorder (FASD)
Updated: 23 March 2017
All tamariki are unique and have mana, and the journey to oranga and success for tamariki with FASD needs special knowledge and practice.
Studies suggest 30-50% of children and young people in care will have FASD. The challenges of this brain-based disability can heavily impact tamariki, their whānau and the social workers, caregivers, schools and professionals surrounding them.
If you are working with a child or young person with FASD or other neuro-developmental condition, it's important to know 'yes' there is something you can do.
Raise awareness and prevention
By raising awareness of the risk using alcohol poses to an unborn baby we can help pregnant mothers make the best decisions. We can also educate other young people, whānau and communities on how they can support pregnant mothers to ensure they are doing what's right for their baby.
Raising awareness about addiction and understanding that addiction has a biological basis can help us provide suitable, supportive and non-judgemental assistance to parents for any addiction issues.
'Risking It All: True Stories, FASD Prevention for a Brighter Future' video and handbook support Oranga Tamariki staff with preventing further children being born affected by FASD. Please use this resource at hui-a-whānau or with young mothers and fathers or wider whānau, to help them understand the impact of using alcohol during pregnancy and how it might relate to their lives. The key messages are delivered in a supportive and non-judgemental way to prevent stigmatisation.
Risking It All: True Stories, FASD Prevention for a Brighter Future (video)
Understanding the effects of stigma
FASD happens in the context of how we as a society use alcohol in our daily lives. A significant proportion of people in NZ have been pre-natally alcohol-exposed. There are several reasons for this, one the high rate of unplanned pregnancies.
It’s important in our practice we understand the context of alcohol use by pregnant mothers. Stigma is a major issue for mothers whose babies are affected by alcohol pre-natally and can prevent them seeking assistance for their children. It’s important professionals avoid practices that stigmatise the mother and reduce the likelihood of assistance. Subsequent alcohol-free pregnancies are more likely for mothers with children with FASD who are well-supported, and who learn about the effects of alcohol on their unborn.
FASD - a mother's story (video)
We acknowledge this mother's courage in sharing her experience of having a child with FASD who came into care. We need to reflect on her experience and consider how we might better assist a mother and her child from the time of first coming to notice and throughout care in a way that is non-stigmatising and assists a prevention approach for the whānau.
Understand the voice of the child with FASD
By understanding the voice of a child or young person with FASD you are more likely to practise for success. Each child and young person with FASD is unique, but you can understand them better if you understand FASD and FASD-informed practice. FASD is a brain-based disorder so to help a person achieve success in their lives; what's needed is on-going support with a focus on changing the environment rather than changing the person.
Below are video-based training from a Canadian website which provide support and training for educators of students living with FASD - it can also help you as social workers identify the issue and better understand the voice of the child with FASD.
- Slow Processing Pace
- Cause and Effect/Impulsivity
- Memory Difficulties
- Attention Difficulties
- Communication video 1 - Language and Behaviour
- Communication video 2 - Communication Strategies That Work!
- Dealing with stealing
- Why Typical Behavioural Approaches May Not Work
Success for children and young people with FASD (video)
'Success for children and young people with FASD' is an example of how child or young person with FASD in care can become successful. The video interviews social worker, Morgan Ely, Waitakere site manager, Roxane Hughes and Neuropsychologist, Dr Valerie McGinn about a young man with FASD who had been struggling in care and how providing him the right support has changed his behaviour and his life.
Dr McGinn provides further insight into FASD (video)
This video, 'Dr McGinn provides further insight into FASD' provides you with 'what you can expect' with a child or young person with FASD and 'what you can do'.
Often an FASD diagnosis can reconnect a child to a family because all of a sudden people can start realising what’s happening, says Dr McGinn.
Build skills - create an environment where a person with FASD can succeed
All those involved with children or young people in care should build their skills in order to create an environment where a child or young person with FASD can succeed. These people include:
- social workers
- children's teams
- Care and Protection
- Youth Justice.
Below are a number of resources which will help you with this.
FASD eyebite cards
FASD eyebite cards have been developed to help social workers, caregivers and professionals as practice triggers for planning and reflection. Consider how the card/s apply to the situation and use them to help to find ideas to confirm or improve your practice or decision making. The video below, ‘Social work in action launching FASD eyebite cards' interviews supervisor, Tessa Nottingham, who shares her experiences and knowledge of working with a young people person with FASD and demonstrates the cards.
Social work in action launching FASD eyebite cards (video)
FASD '5S' template - for collaborative planning
The FASD '5S' template has been developed in recognition of stress-points around FASD (and neuro-developmental conditions) and the need to quickly re-frame thinking into what will be helpful. Please use this when you are trying to work out what to do next, either for daily/weekly plans or long-term plans. You can use this to help group work, or on your own to help your own thinking.
To use, print out the two-sided A3 template below in colour. You can watch the 3 minute video below for an explanation.
Introduction to the FASD 5S template (video)
Youth Justice - FASD training resources
Young people with FASD are significantly more likely to be involved with Youth Justice than others without brain-based disability. Due to the nature of the brain-based disability, a person with FASD may for example, admit to something they have not committed if they do not understand the situation they are in and are under pressure.
Western Australia have developed a project called 'Understanding FASD - a guide for justice professionals'. They have produced a number of videos and web based learnings which look at alcohol, pregnancy and FASD, and in particular issues faces with the Australian justice system. To view these click on the following links FASD and Justice Videos and FASD and justice
Training for caregivers
There are a wide range of excellent information to support caregivers around FASD - recommended as one of the most useful for caregivers is 'FASD - A Guide to Daily Living' on the NOFAS web page, which provides caregivers with ways to manage things like; routines, dressing, mealtime, bedtime, sleep, supervision, managing hyperactivity, managing impulsivity, social skills, teaching ownership and more.
It also suggests some helpful and simple communication techniques such as:
- Begin all conversations with the child’s name and make eye contact.
- Be specific when telling the child what to do, i.e. “hang your coat on the hanger in the closet” rather than “put your coat away.”
- Use the same words to express directions for daily routines, such as “brush your teeth” rather than “clean your teeth” or “get your teeth done.”
- Be brief and keep directions short as the child may have a short attention span, even though they may appear to be listening.
- Multi-step directions should be given gradually and only as the child exhibits the ability to follow more complex directions.
- Give the child separate instructions using their name as they may not realise s/he is to follow group instructions.
- Speak slowly and pause. Auditory processing may lag behind rate of speech. Repeat and restructure as needed.
- When the child needs to focus on a task or listen to you, keep the environment as free from the distractions as possible (i.e. TV, radios, video games, other people)
- Lists for older children that give step-by-step simple instructions on how to do things can be a useful life skill for both common and unexpected situations.
- If the child does not know what to do next, jog their memory.
- Link one task with another to help establish sequences e.g. dinner comes after homework; the bus comes after breakfast; story time comes after the bath.
Others sources of information that should be accessed and shared with caregivers are:
- NOFAS web page for FASD caregivers provides a comprehensive array of FASD strategies for all kinds of situations and issues across the lifespan.
- Video on managing money session (82 mins), presented by the Government of Alberta, Canada and deals with one of the more stressful matters that families have to navigate, the allocation and management of money.
- Fetal Alcohol Spectrum Disorder — Care Action Network (FASD - CAN): a non-profit incorporated society made up of parents, caregivers, extended whanau and professionals. They are united in their passion to improve the lives of those living with Fetal Alcohol Spectrum Disorder.
- Resource of the Aotearoa NZ Ministry of Education
- Resources to help understand the FASD brain and educational resources for FASD from the Edmonton Regional Learning Consortium, Canada
Below are links to further FASD resources recommended for parents and caregivers:
Connect with communities
By building a community network of support around a child or young person with FASD you will work more effectively to build an environment which they can succeed in. Whānau, caregivers, teachers, and other community agencies all need to understand the child and build FASD-informed skills to support them. We will also see better outcomes for children and young people with FASD if Education, Health, Police and other agencies work together and have a shared FASD-informed understanding of their potential, strengths, needs and behaviours.
New Zealand FASD Action Plan
New Zealand now has its own FASD Action Plan, launched on 16 August 2016 by Hon Peter Dunne. It comes with a budget of $12 million to support it over the first three years of implementation.
FASD and employment
Supporting people with FASD is about supporting them to avoid the secondary disabilities, of being excluded from school, mental health issues, crime and difficulties attaining and maintaining employment. A social worker's role in helping a young person with FASD avoid secondary disabilities can be daunting unless they can first see the possibilities for people with this severe brain difficulty, and then understand what it takes, and their role in making things work well for people with FASD.
In this video, you will see how the employer intuitively used FASD practice to develop a young person with FASD in the workforce. The FASD Eyebite cards, used to guide social workers interacting with tamariki with FASD, are also used in this video to demonstrate that the same FASD principles can also assist the person with FASD in the workplace.
The video also points out areas where extra support outside of the workplace is needed to enable employment to be maintained. Whilst the employer in this case took the initiative to support the young person in out of work areas, social work input is important in this area to sure up the chance of achieving, starting and maintaining employment, income and the ensuing lifelong benefits.
Risking It All: True Stories, FASD Prevention for a Brighter Future video and handbook
Purchasing FASD eyebite cards
Oranga Tamariki staff can purchase FASD eyebite cards through KEA using the item code OT580 — the cost per pack vary between $3 and $4 depending on current stock levels. Bluestar are the supplier of the cards.