Ann Sudmalis (Gilmore, Liberal Party) Share this | Hansard source

I, like many others, when first coming to this House was completely bemused by the acronyms of the vast array of medical, educational and social issues that had not yet become part of my everyday life, although I was familiar with many that had already been on my local radar in one way or another. At some stage I heard this weird term—it sounded like 'FASDA'—but I never thought of it again until Dr Sharman Stone spoke to me about its meaning. Since then I have become acutely aware of the impacts of fetal alcohol spectrum disorder, or FASD. Last Friday was the ninth day of the ninth month, the international awareness day for fetal alcohol spectrum disorder. Some will ask, 'Well, why is that so significant?'

This has been a journey initially begun by the adoptive and foster parents of children with behavioural characteristics that were completely misunderstood as a disability rather than just the outward behaviour of naughty or uncontrollable children. These caring parents were concerned that drinking while pregnant, as an issue, was not gaining the momentum that was needed. These original advocates could not increase the awareness of the potential damage to a growing fetus from alcohol consumption quickly enough. Then one day a thought was born and shared: what if, at the ninth minute of the ninth hour of the ninth day of the ninth month of the year of 1999, we asked the world to remember that during the nine months of pregnancy a woman should remain alcohol free? And what if we also asked the world to remember those millions of people who will never fulfil their genetic potential because of prenatal alcohol exposure? At this magic minute in history, could we begin to change the world?

So, on this significant day, 9 September, I was asked to open a local forum in Nowra that was organised by Pam Arnold of the Nowra Family Support Service. Following Pam's acknowledgement to country, I spoke to the participants and acknowledged that while we absolutely respect the guardianship of our land by the First Australians we also need to develop a sense of guardianship for all children in Australia, including the strengthening of our social responsibility of raising awareness of the potential impact of alcohol consumption on unborn children.

So, what exactly is this disorder? When a mother is pregnant, if she drinks alcohol there is a chance that the alcohol will pass through the placenta and affect the developing fetus. Sometimes this consumption can negatively affect the growing baby, either cognitively, behaviourally or in their neurodevelopment. The symptoms are highly individual, making diagnosis extremely difficult. Fetal alcohol syndrome is widely recognised to be the most extreme condition on the spectrum. Sadly, there is no cure, although if it is correctly diagnosed and then good management strategies are put in place then the impacts can be reduced for the life of that individual.

The current research does not indicate whether there is a safe level of consumption, so the general advice is not to drink alcohol when you are pregnant. And there of course lies one of the problems: falling pregnant is not an event that is always planned. In rural and country areas, drinking and other drug consumption can sometimes be viewed as a recreational activity. Nonconsumption of alcohol during pregnancy would be greeted with the comment, 'You've got to be joking!' The research, however, is showing that binge drinking is particularly harmful, and it happens way too often. Many times conception actually occurs under exactly those circumstances.

In May this year, an Australian FASD diagnostic instrument was listed as being available. It is described as a screening tool. The screening tool does not diagnose FASD; it simply identifies people who are at high risk of FASD, who would then be recommended for a diagnostic assessment. This is a major step forward, particularly if we can use the screening process with young children and then use intervention and management to assist them and their families.

Some of the characteristics include low birth weight, smaller than average head circumference, internal organs such as the heart or liver being defective, external birth defects of the ears or the eyes, decreased muscle tone, uncoordinated sucking reflex and delays of gross and fine motor skills. Sometimes there are notable facial indicators, but in 90 per cent of affected babies that is not the case. FASD is often referred to as the invisible disability, frequently going undiagnosed. Other cognitive or neurodevelopmental indicators could include poor impulse control, inability to predict outcomes, slow auditory pace and deficits in spatial awareness. It really is important to acknowledge that these are symptoms and not behavioural problems. They are indicators of permanent and unchangeable brain damage and not always within the control of the child. By looking at such events in a child's life and perhaps learning of their mother's pregnancy behaviour, we may discover a completely different way of helping these affected children. This really is something we should check early for the sake of our children and our educators who may be struggling with children who are not conforming to the usual patterns of development and learning.

I am greatly concerned that this disorder is by its very invisibility a creeping and growing problem, especially where we cannot convince our girls and young women that drinking alcohol and growing a baby in your womb are activities that really should not be done together. But, further to that, I have concerns about the way alcohol use is spreading across society, both here and across the globe. As I opened the forum on fetal alcohol spectrum disorder in Nowra to mark this international day of awareness, I remembered my time volunteering in India. When I first went, more than 20 years ago, I loved to see the roadside chai stalls, and especially to watch as they cooled the boiled milk pouring from the stainless steel cup to the shallow dish from a high outstretched arm's length, which is quite a feat of skill, pouring from one vessel to the other. However, over the years these chai stalls have gradually been replaced by carts selling alcohol. I shudder to think what that means for future generations of children in developing nations, as this change is not limited to India; it is an increasing consumption item in many places around the world.

The growing use of alcohol in Australia and its impact on newborn babies was the subject of a parliamentary inquiry resulting in a report titled The hidden harm, and then in June 2014 the government released the National Strategy to Tackle Fetal Alcohol Spectrum Disorder, allocating $9.2 million to begin the battle with what is, in some of our Australian communities, the highest incidence of FASD or FAS harm in the world. Babies whose mothers consume alcohol when they are pregnant may be born with a range of these irreversible disabilities. I wish to work with my local advocacy teams and support services to examine which strategies are working, what else should be done and what are their priorities. Have we made any headway in the journey of reducing the incidence of fetal alcohol spectrum disorder? It is important to get feedback from those very service providers who are directly working in the field and can give very strong, relevant and meaningful advice as to future and better directions.

Another team member from the Nowra Family Support Service, Liz Payne, said fetal alcohol spectrum disorder was only recently being diagnosed in Australia. Studies have shown that some women consume large amounts of alcohol without any noticeable effects on their babies, and yet for others there are effects after just a few drinks. Liz Payne said it is like playing Russian roulette with your baby. Really, there is no safe period; it can happen to anyone at any time. There is a lot of misdiagnosis in the system. Many people with fetal alcohol spectrum disorders end up in jail because they never change, and some are now raising their own children with ongoing issues surrounding drug and alcohol abuse and domestic violence.

Fetal alcohol spectrum disorder is not something that can be cured, but it can be managed, provided we know of its existence. Staying away from alcohol during pregnancy is the key. Families and friends can also play an important role in supporting pregnant women by joining them in giving up alcohol during their pregnancy. This year's federal budget allocates an additional $10.5 million over four years to continue the FASD Action Plan, which identified priority areas for action to reduce the impact of the disorder across Australia. I take this opportunity congratulate the Nowra Family Support Service for their initiative in this very important community program of change. Now is the time to work together to raise awareness of fetal alcohol syndrome and its effects on families and the wider community.

As the federal member for Gilmore I support our government's effort and continued funding of the FASD plan and welcome any assistance it will provide to such services as those provided by the Nowra Family Support Service. This booklet and these coasters are examples of raising local awareness. The idea is do not drink alcohol when you are pregnant. I look forward to seeing the positive results of this funding both locally and nationally, and I commend the hard work of our local service providers in the electorate of Gilmore.

See this speech in context