“I often think about what is going to happen to my son when I am no longer around. Where is he going to live and be safe? How can I protect him from becoming a victim at the hands of others, and from the effects of his brain injury? Who else is going to care?”

– Quote from the mother of a child with FASD

These concerns are felt by most parents of neurodiverse children, but they are often amplified for parents of children with FASD, because of their brain differences which affect executive and adaptive functioning.

Executive functioning includes skills like planning, problem-solving, managing time, regulating behaviour and emotions and staying focused. These are ongoing challenges for most people with FASD.

Adaptive skills include the everyday tasks neurotypical people do without thinking such as understanding money, telling time, managing personal care and navigating social situations.

Conceptual skills, such as applying insight, recognising manipulation or danger and understanding rules or laws, are often compromised by having FASD. And many individuals with FASD crave connection and want to please – which can make them vulnerable to being taken advantage of.

Intelligence does not predict how well we do in life, but our adaptive skills do. For this reason, we need to think about the goal of creating safe and secure interdependence – not independence as many professionals will tell you should be the goal. While for some people with FASD independence may be the goal, for the vast majority this will not be the case. Research and the lived experience shows us this.

But we must also not forget the many strengths people with FASD have – as well as their challenges. They are capable of great growth and development as they mature. It just takes them longer, and in the daily activities and dramas of life it can be very easy to lose sight of this fact. We need to support them to develop their self-potential and personal identity as adults, as much as we need to think about scaffolding their challenges. In our desire to keep them safe in a society they do not understand and which does not understand them yet, we must acknowledge their right to decide their own path in life and help guide them as best we can. 

FASD is something I have – it’s NOT who I am!

Acknowledgements and thanks

FASD-CAN is grateful to Nan Jensen at Better Lives Legal, a specialist disability law service, for her review and input to this material. Many thanks Nan. 

Disclaimer

FASD-CAN has collected the information in this resource from publicly available sources. It is intended to provoke thought and dialogue about important legal issues relating to disability protections. However, it does not constitute legal advice, and we strongly recommend you discuss your specific needs with your lawyer, a specialist disability lawyer, or by accessing other legal advice and advocacy services listed later in this resource.  

NOTE: You will find that most services in Aotearoa New Zealand are not FASD-informed – they don’t understand what FASD is, or how best to support people with this disability.   

So when engaging with any service provider, it may help to ask up front, “What do you know about FASD?” then decide whether their services will or won't be a ‘good fit’ for your loved one, who has their own unique strengths and challenges.

FASD-CAN recommends that a support person be available if a young person accesses this resource due to the amount of information it contains which they may find overwhelming.