Fetal Alcohol Spectrum Disorder (FASD)
Updated: 24 July 2019
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.
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.
Prevention/education — Risking It All
'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.
How to order copies of the video and handbook
You can order copies of the 'Risking It All' video and handbook using the following order forms:
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.
Determining whether someone has FASD needs a specialised assessment. These assessments are available at some District Health Boards. If you are unable to get a full assessment, request a neuro-developmental assessment by a Paediatrician to determine whether there is a neuro-developmental condition or neuro-disability, which you may be able to support in the same way as for FASD.
Information needed by assessors
Assessors will need information about pre-natal alcohol and substance exposure. It is not uncommon for pregnancies to be exposed to substance use in Aotearoa/New Zealand. However, this information is very sensitive, and should never be sought or used in a way that could stigmatise the mother. Alcohol use is a societally promoted activity, including (incorrectly) in pregnancy. A great proportion of pregnancies are unplanned, and alcohol exposure can be inadvertent. Not every pre-natally exposed child will have FASD. Each situation is unique, and needs to be dealt with as such.
Explaining the diagnosis
Understanding the cause of the difficulties can be transformational for families, and empower them to avoid future alcohol-affected births, or at least to reduce the risk of future pre-natal alcohol damage. It is also often the starting place for families, caregivers and others to start to know how to support te tamaiti.
In the first instance, the clinician who has undertaken the diagnosis should be asked to explain it to the family, caregivers and others working with te tamaiti. The explanation to te tamaiti should also be guided by the clinician, and how and when this happens will depend on the developmental level and current situation of te tamaiti. Once it has been explained by the clinician, there will be times when families and caregivers will need to discuss it further. Discuss this with your social worker.
Providing a diagnosis needs to be done hand in hand with providing FASD-informed support. Some tamariki who receive a diagnosis of FASD will also receive a diagnosis of intellectual disability. A diagnosis of intellectual disability will enable a referral to a Needs Assessment Service Co-ordination organisation (NASC), which may be able to provide disability support services.
Many people with FASD will also have other physical conditions of various body systems as a result of pre-natal alcohol exposure. Be aware of this possibility, and provide access to medical assessment and support as needed.
Supporting mothers and families with addiction issues
Consider how you will assist te tamaiti by supporting their family with any addiction issues. Avoid any blame as this is counter-productive and will alienate mothers and families from the process to support their child.
Expect and support family/whānau grief
Be aware of the shock and grief experienced by any family/whānau from learning that their tamaiti has a diagnosis. It takes time to process the newfound knowledge — allow this time. It's important to whakamana tamariki and family/whānau and focus on what can be done for the child to assist their success.
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.
Voices of people with FASD
Books written by people with FASD
Love me enough. Faces of fetal alcohol is a website where you can read books by people with FASD.
Video of Maggie May
Maggie May is a 21 year old young woman with FASD. On this video she speaks about day-to-day experiences of being a person with FASD. Maggie’s video provides insights for people with FASD and families/caregivers/professionals.
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
- people working in early intervention
- people working in intensive intervention
- Care and Protection
- Youth Justice
- transition workers
- health professionals
- any other people supporting someone with FASD.
Below are a number of resources which will help you with this.
Social workers and professionals, remember to whakamana whānau and caregivers who are looking after someone with FASD, accepting any strong feelings, so that you are respecting their dignity.
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.
How to order FASD eyebite cards
Oranga Tamariki staff can access FASD eyebite cards by emailing Bluestar.
If you're external to Oranga Tamariki you can get FASD eyebite cards by emailing us.
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.
You can watch the 3 minute video below for an explanation.
To use, print out the two-sided A3 template below in colour:
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
Support for caregivers
There is a wide range of excellent information to support caregivers around FASD — recommended as one of the most useful for caregivers is 'FAS — Parenting children affected by Fetal Alcohol Syndrome: a guide to daily living'.
This resource provides caregivers with ways to manage routines, dressing, mealtime, bedtime, sleep, supervision, managing hyperactivity, managing impulsivity, social skills, teaching ownership and more.
It also includes some helpful 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, such as dinner comes after homework; the bus comes after breakfast; story time comes after the bath.
Remember to whakamana tamariki with FASD, no matter how you are feeling about a situation, so that you are respecting their dignity.
Information on FASD for caregivers
Here is a selection of websites which can get you started in understanding how to support someone with FASD, and support your resilience.
FASD Caregiver Support in NZ:
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 has its own FASD Action Plan, launched on 16 August 2016 by Hon Peter Dunne.
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 by emailing Bluestar.