For confidential information or support please call our National helpline
Australian FASD Support groups
The staff and family support team at NOFASD Australia understand the feelings of isolation sometimes experienced by families living with FASD. While we are unable to provide direct assistance such as treatment or legal services, we do provide confidential telephone and email support to individuals living with FASD and their parents, carers, family members and service providers.
If you are seeking referral information to diagnostic and related supports throughout the country or would like the opportunity to share your experience or concerns with our staff or family support person please call us on 1800 860 613 (free call) or send us a message.
This GOWI Evaluation Report outlines the development of the digital online Getting on with it (GOWI) pilot between NOFASD and Dr Anita Gibbs over the course of 2019, and includes a combined evaluation report of an internal brief survey as well as an external telephone-based evaluation undertaken in early 2020 by an independent, external contractor
Families Linking with Families program
Applications open, limited spaces, sign up now!
During 2021 NOFASD Australia has been coordinating a series of free, online, structured and guided support groups to facilitate information sharing among parents/caregivers who are living in Australia and supporting someone with diagnosed or suspected Fetal Alcohol Spectrum Disorder (FASD).
The final support group for this year will commence in mid-October and those who are interested are encouraged to apply soon as there are limited places available.
The support group will meet for 90 minutes once a week over seven weeks using a mix of facilitator-led and group discussion, activities, resources, film and video clips and guest speakers. There will be a maximum of 15 participants in the group and an emphasis on respecting the confidentiality of information shared. All sessions will be conducted online via Zoom, allowing participants to engage face to face. Information sharing will include a focus on FASD across the lifespan, lived experience, managing stress, interventions and strategies, accessing supports and building your own family resilience and strengths.
The evidence-based content has been developed in conjunction with Associate Professor Anita Gibbs (PhD) from the University of Otago who is an adoptive parent, social worker, and university academic. She has both lived experience and research knowledge of FASD.
Feedback from participants in the support groups conducted earlier this year has confirmed the great value to be gained from participating in a support group with comments such as:
“Putting all the pieces together to help give me a much fuller understanding of the disability,”
“Realising that we as a family are not the only ones going through this and that there is light at the end of the tunnel.”
“Being in a group of people who understand, and the facilitator having lived experience. Access to information and resources in a structured way. Positive but realistic approach.”
Participation in the support group is free, but participants are required to commit to all 7 sessions to gain full value from the training. A certificate of completion will be sent at the conclusion.
NOFASD is now inviting applications by those who are interested in participating in the seven-week support group program. This is a no blame, no shame course run by professionally qualified parents who have experience of FASD.
To find out more and to register your interest, send us a message on our contact page.
Other Support Groups
Adelaide FASD Support Group – one on one support to South Australian parents/carers is offered by NOFASD founder Sue Miers. Support is offered either face to face or via zoom. Links can sometimes be facilitated with other carers in your area. Please use our online online enquiries form to register your interest.
Support for Parents of Kids with Neurobehavioural Challenges (international). A FB group for parents/caregivers interested in learning more about the neurobehavioural model for parenting children with challenging behaviour, facilitated by Eileen Devine, experienced therapist, support coach and parent of a child who has FASD.
Shifting the paradigm: towards a neuro-behavioral approach to FASD (international). This group was started by Adrienne Bashista, co-founder of FAFASD, and is intended as a support and outreach for the non-profit. The Shifting the Paradigm group is about changing our focus in caring for people who have FASDs from trying to change unwanted behaviors after they happen to, instead, see behavior as a symptom as what is going on in the brain.
Flying with Broken Wings (International Group) – a closed FB support group for adults who have FASD and those who work with or care for them. Created by RJ Formanek, a person living with FASD.
MyTime groups are also active in every state and provide support for mothers, fathers, grandparents and anyone caring for a child with a disability or chronic medical condition. It’s a place for you to unwind and talk about your experiences. It’s a world away from appointments and therapy. It’s support for you.
Carer Gateway is a national online and phone service that provides practical information and resources to support carers. The interactive service finder helps carers connect to local support services.
Care for Carers
It is extremely important to look after yourself, but we understand that this can at times be a very difficult thing to do! You are not alone. Caring for a young person with FASD can be exhausting and isolating. You are always welcome to call or email NOFASD’s helpline on 1800 860 613 to talk about your experience, discuss strategies, or to be connected with other families with similar experiences.
If your child is eligible for NDIS funding you may be able to access respite services to take some time to care for yourself. There is no item listed under NDIS specifically as ‘respite’, which has caused confusion, but respite is available and is described as Supports for Sustaining Informal Supports. Read more about accessing the NDIS.
Eileen Devine recently published a valuable article explaining caregiver burnout and providing suggestions. Read it here.
To read about another parent’s experiences raising a child with FASD follow this link to read Mama Maremma’s blog.
Caring for Carers Australia provide support across the country. Visit their website.
Kath, who is also raising young people living with FASD, talks about caring for carers’ mental health in the video below.
International Information & Support Networks
National Organisation for Fetal Alcohol Syndrome (USA)
Proof Alliance (Minnesota)