The Loop - e-news

National Organisation for Fetal Alcohol Spectrum Disorders Australia.
[ Issue #25, September 2015 ]

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Dear Members & Supporters,
This month in “The Loop”
The month of September brought International FASD Awareness Day, and as far as NOFASD Australia was concerned, the day was an outstanding success. Workshops, training and displays were held around the country, and our open pledge to everyone to not consume alcohol in acknowledgement of FASD was well received, with organisations such as FARE and Telethon Kids Institute joining us.

During FASD Day and the remainder of the month, subscriptions to our newsletter increased dramatically, along with our Facebook page 'Likes', and we therefore welcome you all to our community. We look forward to giving you the most up-to-date information that we can, and – more importantly – providing you with support as required.

It can never be said enough times that NOFASD Australia exists for its community. Ultimately, we are here to represent those living with FASD and their families, to be a voice for those who believe they don't have one. Please help us help you by sharing our newsletter and community with your friends and family. It's free to join, and while we've done our job if we help just one person, our "on paper" numbers assist us when applying for funding – to show NOFASD Australia is an organisation that a) people care about, and b) our community needs.

I'll leave the rest of the newsletter to speak for itself! We have an entry from the events NOFASD Australia directly attended on FASD Day, and Vicki's monthly "From My Desk" piece outlines why organisations such as NOFASD Australia are required in our country.

As always, join us on Facebook and Twitter for consistent updates about the latest news and events, and please share the NOFASD Community newsletter with your family and friends.

Until next time,
Terri Baran
Social Media & Administration Officer

NOFASD Australia does not necessarily agree with the articles below. They are provided for interest purposes only.
From My Desk...
I have been thinking a lot and talking with others about the connection of FASD between FASD, mental health and domestic violence. Parents share their child's story about how living with FASD is experienced as ongoing despair and frustration when their child's attempts to meet unrealistic expectations based on their age and developmental ability perpetuates a personal sense of failure. We hear and speak often of the 'unfair' labelling which is applied to the behaviour. We might instead understand that the persistence patterns of behaviour we observe and which seem resistant to typical behavioural interventions might be the symptom of the underlying brain-based condition. It is the principle here which is worth remembering – I cannot do rather than I will not do. A citation on mental health from Anne Streissguth's1 longitudinal study on the life course of those diagnosed with FASD is frequently made. I found a 1996 reference to this research which indicated 60% of children with FASD have a diagnosis of ADHD. For adults, most will have clinical depression and research reveals 23% have attempted suicide and 43% have experienced suicidal thoughts.2 The complexity and tragedy of the issues should not be simplified but strategies to address mental health and/or domestic violence ought to accommodate thinking about individuals who live with FASD and how children, adolescents and adults experience trauma. Why is the incidence of mental health so high among those who live with FASD? Is it an accumulated sense of failure, of not fitting in with peers, of trauma which is undisclosed or an outcome of 'FASD invisibility'? FASD and connection with domestic violence (and mental health) needs expanded consideration of victim and offender. The primary and more commonly known conditions of FASD like developmental delay; difficulties with information processing, memory and judgement, cause and effect reasoning and/or completing daily tasks are often at odds with the person in the room is articulate, intelligent, friendly and willing to try. Symptomatic behaviours can be defensiveness, withdrawal and/or aggression. Another meaningful association is the overwhelming desire for friendship made by older individuals living with FASD. How does an individual living with FASD report on the circumstances of her intimate relationship when memory and information processing may be difficult? How does the offender living with FASD explain their actions when cause and effect reasoning is difficult?

I think this is a topic which needs a national conversation and as always, your thoughts are welcome.

In addition to the events for International FASD Awareness Day, Adelle (National Educator with NOFASD Australia) delivered education and training workshops for parents/carers who are supported by different organizations. Four workshops in South Australia with Anglicare, Life Without Barriers and Lutheran Community Care gained positive feedback. Examples: "Really enjoyed this, extremely informative"; "Strongly recommend this workshop and organisation in raising awareness"; "Amazed by the similarities between FASD & ASD" and "Thank you, very knowledgeable presenter, easy to listen to." For community service workers who attended workshops in Narrandera and Dapto NSW, the feedback was similarly expressed in the following examples:
  • I feel the need to promote awareness and that FASD should be a priority to Government health policy. Education & awareness is the key to change and education.
  • Frustrated at the lack of services & diagnostic services in Australia
  • Well delivered, facilitator was passionate about her work and made this content easy to understand/digest.
  • Great, I want to implement in schools.
  • This needs to mandatory for all health professionals and teachers
  • Excellent knowledge and information about FASD
Whilst positive feedback on presentation, content and the work of NOFASD Australia is always welcomed, the expressed need for support, diagnostic services and for cross sector education and training particularly in regional Australia are consistent messages about unmet need. These demands cannot be adequately addressed without cross sector co-ordination, collaboration and increased resources.

More websites on parenting, education and health have come to our attention because information on FASD is not included. If you find one, let us know.

Vicki Russell

  1. STREISSGUTH, A.P., & KANTER, J., (eds.) (2002) The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. University of Washington Press: Seattle and London
  2. KELLERMAN, T. (2002)
Of Special Interest

International FASD Awareness Day happened on the 9th September and I am aware that many events took place across Australia and the world. Next year we must ensure individuals and groups register with us so that all events can be highlighted. 

In Narrabri, NSW, the local community drug action team (CDAT) organised training workshops, a meeting to formulate the development of a FASD Action Plan and offer a community BreakFASD. Helium balloons were released from the bridge and other balloons morphed as ‘babies’ under T-shirts. Both attracted a lot of attention from those who drove across the bridge.


L-R:Cigdem Watson (CDAT), Vicki Russell & Helena Hodgson (ADF); Balloons released near Narrabri Bridge.   

The initial meeting to gather community input to inform a FASD Action Plan for Narrabri produced rich information. The process was in world café style and recognised the parent and child across primary, secondary prevention and early intervention. Post-partum support was included for parents. The next step will be to use this information to draft a plan.

Adelle joined with Sheffield District High School in Tasmania for International FASD Awareness Day. An education session with senior students from the child studies class included making mocktails and a visit by three mothers with babies. The format for the visit was a circle of conversation including discussion on their own family experiences with alcohol. A health promotion event followed with the whole of school and community participation and many took the pledge to not consume alcohol on the 9th September.

National News and Media
A Perth Children’s Court magistrate says every child charged with a criminal offence should be promptly screened for fetal alcohol spectrum disorder. Magistrate Catherine Crawford says clinicians should have assessed the child or youth before sentencing so their cognitive limitations were understood by the court. Screening should include children in diversionary programs and those remanded in custody or in a detention facility.

Changing our drinking culture could improve the lives of thousands of babies, the Australian Medical Association says. Speaking on International Fetal Alcohol Spectrum Disorder Awareness Day on Wednesday [9th September], AMA president Brian Owler urged medical professionals to educate women about the dangers of drinking while pregnant.

Mothers on the Darling Downs are being warned about the life-threatening dangers of drinking while pregnant. Since the start of the 2013 financial year, there have been 28 cases of babies born with foetal alcohol spectrum disorders or neonatal abstinence syndrome (causing withdrawal symptoms) across hospitals in the region.

Australians, including those forgoing meals to pay their bills, spend more on alcohol each week than they do on education and personal care, a groundbreaking study has revealed. Households spend an average of $32.30 each week on alcohol, more than education ($30.60), personal care ($24), and tobacco ($12.50). The findings were revealed in an Australian-first study on alcohol expenditure, correlated to housing and financial situation. The report also confirmed the long-assumed link between financial disadvantage and alcohol.

Fetal alcohol spectrum disorder is costing New Zealand up to $70 million a year in lost productivity, new research suggests. But health economist Dr Brian Easton says with certain rehabilitative and preventative methods, that figure could reduce over time as more young women learn about the harmful effects of drinking while pregnant.
Because of the nature of their disability, individuals with FASD have very specific needs. CPI’s Nonviolent Crisis Intervention® training program is relevant for those supporting individuals with FASD, and there are specific considerations and possible adaptions for making your training as applicable as possible to this very unique group.
International News and Media
Around one in a hundred babies in Europe is born with disabilities caused by mothers consuming alcohol during pregnant, Addiction Switzerland has warned. It is calling for awareness in Switzerland to be raised on the issue. Up to 19% of women in Switzerland aged 15-45 drink too much alcohol at least once a month, the non-government Addiction Switzerland said in a statement. Among pregnant women this is around 5-6%.

Although South Africa has the highest foetal alcohol syndrome rate in the world, government's efforts to address the problem have been inadequate. And the alcohol industry has evaded responsibility for tackling the root causes of the disease. In the Western and Northern Cape provinces, between 5% and 10% of children entering school have foetal alcohol syndrome. And there are areas in the Western Cape with clusters of higher foetal alcohol syndrome rates than those found in earlier studies.

Around the globe, bells rand at 9.09am as the world commemorated World Foetal Alcohol Syndrome (FAS) Day yesterday (9th September). In Cape Town, various events were held to raise awareness of the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Foetal Alcohol Spectrum Disorders.

US Senator Lisa Murkowski recently introduced S. 2060, the Advancing FASD Research, Prevention, and Services Act, a bill to provide support for individuals and their families afflicted with Fetal Alcohol Spectrum Disorders. This bill would reauthorize and extend the Fetal Alcohol Syndrome prevention and services program, which provides support programs for adolescents with FASD like vocational training and mental health services, and raises public awareness and education.

All healthcare professionals should deliver a clear message to women that there is no safe level of alcohol consumption during pregnancy, according to Alcohol Action Ireland. Speaking on International Foetal Alcohol Spectrum Disorders (FASD) Day last week, CEO Suzanne Costello said women were receiving conflicting advice from various sources, including healthcare providers, about consumption during pregnancy.

The public needs educating about the effects of alcohol on unborn children in an effort to stem the growing number of babies born with brain damage, says a new, groundbreaking provincial report. The report into FASD is the result of 25 roundtable meetings across the province, organized by the Ontario Ministry of Children and Youth Services and led by Durham MPP Granville Anderson. Anderson, parliamentary assistant to Minister Tracy MacCharles, re-iterates throughout the report that a massive public education campaign is necessary.

Indigenous elders often say that memory is in the blood and bone, that our stories are passed not just verbally but through a kind of genetic memory. Well, it turns out that may not be far from the truth. Amy Bombay is Anishinaabe from Rainy River First Nation in Ontario. She's an assistant professor of psychiatry in Dalhousie University in Halifax, and has been studying the impact of trauma and how it reverberates through generations.

Ari Schablein, who has a Fetal Alcohol Spectrum Disorder, or FASD, says she stopped drinking when she found out she was pregnant. "I didn't want to make the same mistakes I've known my whole life, since I've been able to understand what FAS was," Schablein said. "I didn't want to pass it on to my daughter." Schablein knows more about the disability than most. She was one of six children with FASD adopted by Carol Hatch, a former teacher who is now helping her children navigate adulthood in Anchorage.

September 9 is Fetal Alcohol Syndrome [sic] Disorder Awareness Day worldwide. It's on the ninth day of the ninth month in recognition of the motto "None in Nine," which reminds moms not to drink alcohol during their nine-month pregnancy. An Anchorage event brought together resources for local families affected by FASD. Every year in Alaska, more than 160 babies are born with FASD.

Fewer children should be born with a physical or mental damage caused by their mother's drug or alcohol abuse during pregnancy, claim the interior minister, Karen Ellemann, and the health minister, Sophie Løhde. A new proposal suggests it could be possible to detain pregnant addicts against their will in a treatment facility for the duration of their pregnancy, as is the common practice in Norway.
Latest Research
Tan CH., Denny CH., Cheal NE., Sniezek JE., and Kanny D., Morbidity and Mortality Weekly Report, 25 September 2015
Excessive alcohol use is risk factor for a wide range of health and social problems including liver cirrhosis, certain cancers, depression, motor vehicle crashes, and violence. Alcohol use during pregnancy can lead to fetal alcohol spectrum disorders (FASDs) and other adverse birth outcomes. Community studies estimate that as many as 2% to 5% of first grade students in the United States might have an FASD, which include physical, behavioural, or learning impairments. This study found one in 10 pregnant women in the United States have consumed alcohol within the previous month, and 1 in 33 have engaged in at least one episode of binge drinking during that same period. The study also found that pregnant women who binge drink – defined as consuming four or more alcoholic beverages on a single occasion – tend to do so more frequently than women who are not pregnant.

Bell E., Andrew G., Di Pietro N., Chudley AE., Reynolds JN., and Racine E., Public Health Ethics, 18 May 2015, doi: 10.1093/phe/phv012
Stigma can influence the prevention and identification of fetal alcohol spectrum disorder (FASD), a leading cause of developmental delay in North America. Understanding the effects of public health practices and policies on stigma is imperative. [The researchers] reviewed social science and biomedical literatures to understand the nature of stigma in FASD and its relevance from an ethics standpoint in matters of health practices and policies (e.g. diagnostic practices, awareness campaigns).

Smyth E., Yusuf S., et al., The Lancet, 16 September 2015, doi: 10.1016/S0140-6736(15)00235-4
Alcohol consumption is proposed to be the third most important modifiable risk factor for death and disability. However, alcohol consumption has been associated with both benefits and harms, and previous studies were mostly done in high-income countries. This study investigated associations between alcohol consumption and outcomes in a prospective cohort of countries at different economic levels in five continents.

Coomber K., Martino F., Barbour IR., Mayshak R., and Miller PG., BMC Public Health, 22 August 2015, doi:10.1186/s12889-015-2160-0
There is limited research on awareness of alcohol warning labels and their effects. The current study examined the awareness of the Australian voluntary warning labels, the ‘Get the facts’ logo (a component of current warning labels) that direct consumers to an industry-designed informational website, and whether alcohol consumers visited this website. Results showed that no participants recalled the ‘Get the facts’ logo, and the recall rate of warning labels was 16% at best. It appears that the current warning labels fail to effectively transmit health messages to the general public.
Upcoming Events
Remember to visit our events page on our website for a full listing of upcoming events.

DATE: 17-18 November 2015
DETAILS: The Public Health Association of Australia (PHAA) – in conjunction with the National Complex Needs Alliance (NCNA) – invites you to participate in the second Australian conference to showcase successful programs/approaches in addressing complex needs – with the broader purpose of identifying what works and how.
NOFASD Australia’s founder and chairperson, Sue Miers, and CEO, Vicki Russell, will be presenting at this event.

Do you have a FASD-related event to promote?  Email Terri at [email protected]. 
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