First steps in addressing FASD can unlock endless possibilities

It is not lost on any of us involved with reducing harm from prenatal alcohol exposure that the status quo for addressing Fetal Alcohol Spectrum Disorder (FASD) in Aotearoa remains bleak for most families.  A recent Otago Daily Times article featuring Associate Professor Anita Gibbs advocating for distressed and largely abandoned families living with FASD, lays it bare!   It highlights how ignorance and disbelief is causing thousands to be incarcerated, placed in care or left the fend for themselves without proper support.

Surely we are capable of directing our efforts more strategically than leaving vulnerable, permanently brain injured young people to fend for themselves or worse, wait until they are homeless or committing crime to come to the attention of funded services?  What a tragic waste of human potential, what an unethical way to proceed, and what a waste of taxpayers’ money!  

“The common denominator in all this is of course alcohol, and the hold it has on our accepted ways of living.”

I have spent 24 years fighting to raise awareness of this preventable harm from a well-established evidence base – preventing it from happening in the first place and preventing secondary outcomes arising from the poor accommodation of those born with FASD. We have achieved a number of positive steps of that there is no doubt, and the FASD informed workforce is growing, but the paradox is that science has not enlightened all pathways and there exists (among some) a continued level of ignorance, denial, apathy, and frankly draconian thinking. After decades of effort, that cuts deeply. The common denominator in all this is of course alcohol, and the hold it has on our accepted ways of living. This artfully marketed commodity has a powerful influence whether we feel our decisions are autonomous or not. 

Isaac Asimov (1929-1992), the American writer and professor of Biochemistry at Boston University, captured this inconsistency well when he said, “The saddest aspect of life right now is that science gathers knowledge faster than society gathers wisdom.”

“Courageous caregivers are too often denied even a conversation that is necessary to begin some shared understanding.” 

If Isaac and I experience similar frustrations decades apart, just imagine how hard it is for those living with FASD to breakthrough. The desperate stories that are shared by whānau members in amongst some helpful moments, are relentlessly similar, tales of barriers clanging shut whenever FASD is mentioned. Courageous caregivers are too often denied even a conversation that is necessary to begin some shared understanding. 

The reality of FASD is too big to deny and shove under rugs like some inconvenient truth. Our pro-drinking environment will continue to harm more and more citizens. Unless we begin to accept change and act decisively on this reality and better support those already living with FASD, we will never break the cycle of intergenerational despair.  

FASD Awareness month has come and gone. We might have ticked the box for a fleeting moment, but now what?  There are clearly multiple reasons why something appears insurmountable and impossible to change, not least of which is juggling complex health and social issues, but the only authentic reason is the reluctance to start; that frozen barrier of not trying.  It starts with simple honest conversations and a to-do list of what needs doing a little differently. How hard can that be? Improving practice is surely a cornerstone of standard practice but it does require some leadership and determination to take the necessary first steps. Is that you? If not, who can you team up with to achieve that all important start?  What steps will help your service be more FASD-aware, more FASD-informed, more FASD-focused on an on-going basis?  It is the responsibility of every one of us to do better – at every level.  

What FASD requires does not need to break anyone’s piggy bank. It does however need a new mind-set, it needs a simple FASD-informed rule book - and the ‘how tos’ are freely within reach whenever you look.  Auckland Youth Court Judge Tony Fitzgerald, in his search for improved outcomes for young offenders with FASD developed the ‘5S’ model – Structure, Support, Supervision, keep it Simple, build on Strengths. 

FASD needs an approach filled with acceptance and the humility to learn a new way of doing things. It needs a strengths-based approach and it needs to have enough power to override the sort of professional ignorance and arrogance referred to in the ODT article; which helps no one.  

“We have proved to the world, through the devastation of COVID-19, what is possible when the power of one becomes the resolve of many.”

Aotearoa, we know we are better than the picture laid before us in the ODT article and the countless other media spotlights that have gone before. We have proved to the world, through the devastation of COVID-19, what is possible when the power of one becomes the resolve of many. FASD intervention is no less urgent. It has just been urgent a lot longer. Now is the time to show the world that together we can better protect those vulnerable to the harm posed by alcohol, the permanent brain injury that can so drastically alters one’s life potential and limit their possibilities.

I know there are better stories out there where caregivers and individuals with FASD are listened to and helped. There are many among us who have been willing to rise above the naysaying, and to make a fundamental change for the benefit of their clients with FASD. But all too often it had to be achieved under the radar because FASD is not yet fully recognised as a disability.  And thus it remains in an ad hoc and marginalised cycle going nowhere. Until that changes (and it will), we can and must individually step up our game.

As a very wise Aboriginal woman from the Bidjera and Jagalingou people of Central Western Queensland said when addressing a Canadian FASD conference I once attended, “Knowledge is acquired through learning – wisdom is about knowing what to do with it.”  

We need to be hearing more stories born of wisdom manifested, rather than those born of denial. Let the conversations and best practice to-do lists expand in ever increasing circles. Let’s push back when we hear that something can’t be done and let’s not allow the evidence that people and science are putting before us to be over-ruled any longer. Lived experience is the truth and it deserves respect, trust and action. FASD demands more than a handful of willing individuals, however precious a taonga they are.  Speak up and join together!

Please share your positive stories of change for FASD, and desires for the future with Uncap our Potential! Share your story here.

Author: Christine Rogan, Health Promotion Advisor (Alcohol Healthwatch).