The Loop - e-news

National Organisation for Fetal Alcohol Spectrum Disorders Australia.
[ Issue #23, July 2015 ]

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Dear Members & Supporters,
This month in “The Loop”

NOFASD Australia is excited this month to announce its National Parent Advisory Group (NPAG). If you are a parent or carer of a child/adolescent/adult living with FASD and would like the opportunity to work closely with NOFASD Australia in policy development, future initiatives, campaigns for awareness and much more, please contact us and we will provide you with more information. The purpose of the group is to provide NOFASD Australia with feedback on the above, but it has found a second place as a supportive and encouraging group.


International FASD Day, 9th September, is closing in fast. We invite you to consider hosting a morning tea, luncheon, or other event of your choosing to raise awareness of FASD within your community. If just one person is educated and made aware of what FASD is and how it affects our communities, then the time spent in hosting an event is 100% worthwhile. A fantastic materials package is available from Frontier Regional FASD Training Center.

Your stories are vital to awareness of the reality of FASD - if you have anything to share (you can remain anonymous), please contact us with your stories, we would love to hear from you.

As always, we encourage and invite you to join us on Facebook and Twitter for consistent updates about the latest news and events, and as always, 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...

Vicki Russell's usual "From My Desk" piece will not appear in this month's issue.  Remember to join our community to ensure you don't miss out on future insights from Vicki's desk!

Of Special Interest
Are you the mother of a child with a Fetal Alcohol Spectrum Disorder?
Murdoch University (Perth) is interviewing Western Australian birth mothers to try to understand how the advice from health professionals and friends and family influenced patterns of alcohol consumption during pregnancy.
These interviews will take about 90 minutes each and will be recorded if you agree.
You can choose not to answer a question if you don’t want to and you can end the interview at any time. Whatever you say will be anonymous and won’t be linked to you.
Please contact Naomi Ward ([email protected] or 0407 402 701) with any questions you may have.
A summary of findings will be made available 6 months after the study on request.
This study has been approved by the Murdoch University Human Research Ethics Committee (Approval 2015/060). If you have any reservation or complaint about the ethical conduct of this research, and wish to talk with an independent person, you may contact Murdoch University’s Research Ethics Office (Tel. 08 9360 6677 or e-mail [email protected]). Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.
National News and Media
The consumption of alcohol at high risk levels is a national issue, however, the focus of this inquiry is the harmful use of alcohol in Aboriginal and Torres Strait Islander communities. Many reports and studies have recommended stemming the flow of alcohol to address the problems, but usually these works do not analyse why a person drinks at levels which cause them and their loved ones harm. The magnitude of the problem caused by high risk consumption of alcohol is often hidden by the lack of collection of useful data for example at the time of hospital admissions, when children are put into out of home care because of their neglect, when people are incarcerated because of alcohol related crime and when children are born with Fetal Alcohol Syndrome (FAS) or Fetal Alcohol Spectrum Disorder (FASD) at some of the highest rates in the world.

A significant number of Aboriginal children are falling through the cracks of the education system and later landing in prison because foetal alcohol syndrome is not recognised as a disability in Australia, a national report on alcohol use in Aboriginal communities has found. The House of Representatives standing committee report, Alcohol: Hurting people and harming communities, recommends foetal alcohol spectrum disorders (FASD) be formally recognised as a disability for the purpose of welfare benefits and providing teachers’ aides, and recognised as a cognitive impairment for the purposes of criminal culpability.

Minister for Mental Health and Assistant Minister for Health Pru Goward said the NSW Budget will invest a record $1.7 billion in mental health across NSW in 2015-16. Another key initiative in the NSW Budget is $575,000 towards the $2.3 million commitment over four years to create a Centre for the Prevention of Harm to Children and Adolescents from Drugs and Alcohol at The Children’s Hospital at Westmead.

Drinking alcohol while pregnant is very common, while women who smoke are much more likely to indulge, according to a new study. Expectant mothers across all social groups drank, while 20 to 80 per cent of those questioned in Australia, New Zealand, Ireland and the United Kingdom reported drinking while pregnant. The researchers, from the University of Adelaide, University of Auckland, Liggins Institute and the University of Cambridge, involved 17,244 women who delivered live babies in the four countries.

A recent project conducted through NDARC developed a best practice guide to assist primary care health professionals to identify, support and treat pregnant women who use substances. The project involved a review of effective treatment approaches and input from professionals with expertise regarding substance use in pregnancy.

Drinking alcohol while pregnant is very common, while women who smoke are much more likely to indulge, according to a new study. Expectant mothers across all social groups drank, while 20 to 80 per cent of those questioned in Australia, New Zealand, Ireland and the United Kingdom reported drinking while pregnant.

Women who use alcohol and drugs while pregnant have been let down by a lack of treatment options and long-term support services, a report has found. Researchers from the Australian Catholic University’s Institute of Child Protection Studies looked at the impact of identifying alcohol and drug use among pregnant women, their partners and families. They pointed to evidence that maternal substance use was linked to negative outcomes for unborn babies including foetal respiratory distress, pre-term delivery, low birth weight and higher infant mortality.

There is a call for Newcastle to lead the way in recognising and addressing the issue of Fetal Alcohol Spectrum Disorders. The term is used for a range of conditions caused by fetal alcohol exposure but, because of the difficulty in diagnosis, it is not known exactly how widespread the problem is. A workshop is being held in Newcastle today as the region works on a prevention strategy.

From the moment that I fell pregnant with my son, I realised just how much my life had already started to change. For the first few months I didn’t really feel like drinking, so that was easy enough, but after the queasiness passed, I missed my regular wine, and being at a party with an orange juice in hand wore thin pretty quick. What also didn’t help was that my husband continued to drink regularly. In fact, if anything, he often drank more, as now he had an inbuilt designated driver for all social events.

Getting help to kids mislabelled as “just naughty”, when they have an unrecognised disability caused by alcohol-related brain damage that occurred in the womb, is a major commitment made by the Telethon Kids Institute. Already, early intervention in their child development programs triggered by the mother’s alcohol use in pregnancy has been made possible by the Institute’s work to establish an agreed-on set of tests and measurements for diagnosis of Foetal Alcohol Spectrum Disorders (FASD) in Australia.

A study published by respected British site BMJ Open last week found up to 80 per cent of New Zealand have admitted drinking at some stage of their pregnancy. The official line is that no level of alcohol use in pregnancy is considered safe. Alcohol Healthwatch health promotions adviser Christine Rogan said that alcohol [is] a neurotoxin and when consumed by a pregnant woman, every single cell in the developing foetus [is] exposed to that toxin.

Youth with fetal alcohol spectrum disorder are 19 times more likely to get into trouble with the law than other people, a district health board says. And among those in foster care, the prevalence of the disorder, caused by drinking alcohol during pregnancy, is 10 times the rate in the general population, the Northland DHB says, following a forum on the links between the disorder and the justice system.

Children suffering from foetal alcohol syndrome can be highly explosive, reactionary and verbally abuse others in the classroom, according to a Northland principal. Sally Wilson, principal of Raurimu Primary School in Whangarei, said that foetal alcohol syndrome (FAS) is a growing problem in schools. [She] said that as children move into the school system, FAS becomes more developed as difficulties with memory lead into learning and behavioural problems. “Once you get to intermediate the children are physically stronger, highly disruptive and have mental delays.”

Up to 80 per cent of women in New Zealand, Australia, the UK and Ireland have admitted drinking alcohol during the early stages of pregnancy, according to a new report. The study, published by respected British site BMJ Open, included feedback from 2000 Auckland women and discovered that single women who smoked were most susceptile to drinking during pregnancy. Professor Doug Sellamn, director of the National Addiction Centre at Otago University, found the research “really disturbing”.
This course provides an overview of alcohol use and women, the impact of alcohol on the developing fetus, Fetal alcohol spectrum disorders (FASD) diagnosis, and FASD prevention including brief interventions and screening. This course was developed in collaboration with the Telethon Kids Institute. Human service providers who work with women of child bearing age, their families and communities.

A recent project conducted through NDARC developed a best practice guide to assist primary care health professionals to identify, support and treat pregnant women who use substances. The project involved a review of effective treatment approaches and input from professionals with expertise regarding substance use in pregnancy.

Rebecca Tillou was diagnosed with FAS at age 35. Here, she provides a list of some coping strategies she uses in getting things done and thinking about different things. It also provides some insight for her parents, educators, and employers to know what works for her in her day-to-day activities.

Being an adolescent male can be hard. But add to that an invisible disability affecting how you learn, how you think and how you behave… it can soon become a nightmare. Daniel and Jakob are two teenagers coming to terms with a surprisingly common, yet largely misunderstood disability.

Fetal Alcohol Forum – The FASD Medical e-Network
Published by NOFAS-UK., the June 2015 edition of Fetal Alcohol Forum provides multiple links to original articles by FASD experts, research abstracts, news and media, and other articles relating to FASD.

This month’s Ask The Expert is the second in a two-part look at the importance of nutrition for pregnant women and new mothers. This month, Jeffrey R. Wozniak, Ph.D., L.P. was interviewed. Dr Wozniak examines the importance of nutrition among children identified with an FASD, and discusses his research into promising interventions for this population.

It is absolutely essential that educators and parents understand the kind of brain damage found in FASD before they can start to understand the behaviours of children and adolescents with FASD and be successful in working with them. FASD brain damage is considered to be permanent at the present time. However, research is being conducted on the plasticicty of the brain and its ability to repair itself. To date there is no proven research that the damage done by alcohol prenatally can be reversed.

“It is not uncommon for adoptive parents to come to us feeling out of options for their difficult child and overwhelmed about what could have created all of these DSM diagnoses and intense feelings and behaviours. Especially if the child was adopted at or near birth.
International News and Media
Dr. Carl Bell, a retired professor of psychiatry and public health at the University of Illinois at Chicago, currently a staff psychiatrist at Jackson Park Hospital, calls Fetal Alcohol Syndrome the "biggest public health problem for African-Americans since slavery." Dr. Bell has treated patients for over 40 years. "When I was in medical school, [it] was called socio-cultural mental retardation," Dr. Carl Bell stated, according to the Sun Times, speaking of Fetal Alcohol Syndrome and other neurological damage with the same cause. "It's only been recently that I've been able to figure out what the hell I was seeing."

Some mothers-to-be wouldn't dream of taking an antibiotic without first checking it was safe for their unborn baby – but they might enjoy a glass of wine because they don't understand the risk. That's according to a GP and mother-of-four who believes that widespread ignorance about the actual risks posed by the consumption of alcohol to an unborn baby is one of the issues behind the findings of an international study into alcohol consumption by pregnant women.

One of the UK's leading experts in child health is calling for stronger warnings on alcohol to alert women to the dangers of drinking while pregnant. Sir Al Aynsley-Green said exposure to alcohol before birth was one of the "most significant" causes of childhood brain damage. His call for tougher labelling was backed by delegates at the British Medical Association annual conference.

Researchers discuss FASD and criminal justice [Canada]
Although many people living with Fetal Alcohol Spectrum Disorder are not violent, that segment of the population still has a high incidence of involvement with the criminal justice system. "We now that people with FASD are overrepresented – both as offenders, but also as victims – within the justice system. And, we know that in many places around the country, people with FASD are also overrepresented among those who are incarcerated," said Amy Salmon, executive director of The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD).

Recent high school graduate Gary Riege is a science and math whiz. He's also a Star Wars fanatic, avid computer science techie and Advanced Placement student. He's soft spoken, but he has big ideas, especially when it comes to bringing awareness to fetal alcohol spectrum disorder (FASD) and the need for more educational opportunities.

Children who are diagnosed with fetal alcohol spectrum disorder are at higher risk of having impaired gross motor skills, according to a review of part studies. Balance, coordination and ball skills were the areas where children exposed to alcohol in the womb had the most problems, researchers found. "This is biologically plausible as alcohol is a teratogen which causes damage to the developing brain," Barbara Lucas told Reuters Health in an email "Areas of the brain that may be damaged include those which are important for motor control."

Today MPs take a step towards offering better services and support to children and adults with FASD. Bill Esterson MP, with the support of the FASD Trust, is launching the All-Party Parliamentary Group on FASD. An APPG brings backbench MPs together across party divides to work for an issue about which its members all care deeply. It can put pressure on Ministers and Departments for policy change, and it can help raise issues in the House of Commons. Only a few months on from the first ever Commons debate on FASD last Autumn, this is very welcome.

The Government recognizes that fetal alcohol spectrum disorder (FASD) is a serious public health issue affecting thousands of Canadians. Addressing FASD and other mental health disorders and disabilities is a priority for this Government. This includes mental health issues in the criminal justice system. Supporting those with mental health needs already in contact with the justice system is a priority. Prevention efforts are critical, as those who live with FASD without necessary supports may find themselves in conflict with the law and in contact with the criminal justice system as both victims and offenders. Preventing FASD requires a focus on raising awareness about the risks of drinking alcohol during pregnancy and promoting a healthy pregnancy.

For Dr. James Davie of the Children's Hospital Research Institute of Manitoba, each human cell is like a compact disc full of music that never changes, and the field of epigenetics is the CD player that decides which song gets played. He is leading a team of experts in genetics and epigenetics to better understand and diagnose brain injuries caused by exposure to alcohol in the womb. "Let's say there was a cluster of neurons that never formed because of changes imposed by alcohol during development," says Dr. Davie. "You can't get those neurons back. Once the damage is done, you can't repair it."

Researchers agree that alcohol exposure during pregnancy causes brain damage in the fetus, but aren't yet sure what mechanism is responsible for the range of deficits seen in children and adults with FASD. The role of gene-environment interactions and their interplay in FASD is the subject of a five-year study funded by CIHR. In an article published online this week, mention is made of the efforts of NeuroDevNet investigator Dr. Ab Chudley, who led the development of the Canadian guidelines for FASD diagnosis during the 2000s, and is recruiting individuals and families to study the epigenetics of FASD in tandem with the CIHR program.

Estimating the cost of FASD is necessary for quantifying the fiscal burden and social impact of FASD and demonstrating its significance as a public health issues that requires service systems with prevention and treatment strategies. Currently there are still inconsistencies in measuring those impacts. Popova and colleagues (2011) conducted a key systematic review of studies regarding the economic impact of FASD.
Latest Research
Under-reporting of maternal and perinatal adverse events in New Zealand
C Farquhar, S Armstrong, B Kim, V Masson & L Sadler, BMJ Open, 23 July 2015, doi: 10.1136/bmjopen-2015-007970
The objective of this study was to determine the proportion of maternal and perinatal mortality and morbidity cases, identified by the Perinatal and Maternal Mortality Review Committee (PMMRC), that are also reported within the annual serious adverse events (SAEs) reports published by the Health Quality and Safety Commission (HQSC). The results suggest that the rate of maternal and perinatal adverse event reporting to the HQSC is low and not improving annually, compared with the PMMRC reporting of eligible events. This is of concern as these events may not be adequately reviewed locally, and because the SAE report is considered a measure of quality by the DHBs and the HQSC.

Prevalence and predictors of alcohol use during pregnancy: findings from international multicentre cohort studies
O’Keefe LM., Kearney PM., McCarthy FP., Khashan AS., Greene RA., North RA., Poston L., McCowan LME., Baker PN., Dekker GA., Walker JJ., Taylor R., and Kenny LC., BMJ Open, 6 July 2015, doi: 10.1136/bmjopen-2014-006323
This study set out to compare the prevalence and predictors of alcohol use in multiple cohorts. 17,244 women of predominantly Caucasian origin from two Irish retrospective studies (Growing up in Ireland (GUI) and Pregnancy Risk Assessment Monitoring System Ireland (PRAMS Ireland)) and one multicentre prospective international cohort, Screening for Pregnancy Endpoints (SCOPE) study were the participants. Results suggests that alcohol use during pregnancy is prevalent and socially pervasive in the UK, Ireland, New Zealand and Australia. New policy and interventions are required to reduce alcohol prevalence both prior to and during pregnancy.

Murawski NJ., Moore EM., Thomas JD., and Riley EP., The Journal of the National Institute on Alcohol Abuse and Alcoholism
This article examines basic research that has been or could be translated into practical applications for the diagnosis or treatment of FASD. Basic research also is pointing toward potential new interventions for FASD involving pharmacotherapies, nutritional therapies, and exercise interventions. Although researchers have assessed the majority of these treatments in animal models of FASD, a limited number of recent clinical studies exist. An assessment of this literature suggests that targeted interventions can improve some impairments resulting from developmental alcohol exposure. However, combining interventions may prove more efficacious. Ultimately, advances in basic and clinical sciences may translate to clinical care, improving both diagnosis and treatment.

Maternal periconceptional alcohol consumption and congenital heart defects
Zhu Y., Romitti PA., Caspers Conway KM., Shen DH., Sun L., Browne ML., Botto LD., Lin AE., Druschel CM., and the National Birth Defects Prevention Study, Birth Defects Research Part A: Clinical and Molecular Teratology, 27 June 2015, doi: 10.1002/bdra.23352
Congenital heart defects (CHDs) are the leading cause of infant death from birth defects. Animal studies suggest in utero alcohol exposure is a teratogen for cardiogenesis; however, results from epidemiologic studies are mixed. Data from the National Birth Defects Prevention Study were used to estimate associations between CHDs and case and control mother reports of periconceptional alcohol consumption with expected delivery dates during 1997 to 2007. Analysis of this large, well-defined study sample did not show statistically significant increased risks between measures of maternal alcohol consumption and most CHDs examined. These findings may reflect, in part, limitations with retrospective exposure assessment or unmeasured confounders.

Moore EM., and Riley EP., Current Developmental Disorders Reports, 24 June 2015, doi: 10.1007/s40474-015-0053-7
The range of structural abnormalities and functional deficits caused by prenatal alcohol exposure (PAE) are referred to as fetal alcohol spectrum disorders (FASDs). The disabilities associated with FASDs are said to be lifelong, but we know relatively little regarding outcomes beyond childhood and adolescence. Many of physical, brain, and neurobehavioral features that are present in children with FASDs will endure to adulthood. More research is needed to understand the lasting effects of PAE on adults and the developmental trajectories of FASD.

Huang H., He Z., Zhu C., Liu L., Kou H, Shen L., and Wang H., Toxicology and Applied Pharmacology, 15 July 2015, doi: 10.1016/j.taap.2015.07.005
Fetal adrenal developmental status is the major determinant of fetal tissue maturation and offspring growth. [The researchers] previously proposed that prenatal ethanol exposure (PEE) suppresses fetal adrenal corticosterone (CORT) synthesis. Here, [the focus is] on PEE-inducing adrenal developmental abnormalities of male offspring rats before and after birth, and aimed to explore its intrauterine programming mechanisms.

Doyle LR., and Mattson SN., Current Developmental Disorders Reports 2015, 27 June 2015, doi:10.1007/s40474-015-0054-6
The effects of prenatal alcohol use have been well documented. This review discusses the inclusion of Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) as a condition for further study in the Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (DSM-5). The researchers present a review of the evidence for impairment in three domains highlighted in ND-PAE: neurocognitive functioning, self-regulation, and adaptive functioning. In addition, it also provides guidelines for clinical assessment of each domain. When considering ND-PAE, it is essential to obtain as comprehensive an assessment as possible, including multidisciplinary/multimethod assessment of the individual by a qualified team. It is the aim of the researchers to provide clinicians with a useful reference for assessing ND-PAE and highlight important guidelines to be followed when conducting neuropsychological assessment.
Upcoming Events
Remember to visit our events page on our website for a full listing of upcoming events.

DATE: 7 - 9 October 2015
DETAILS: The Global Alcohol Policy Alliance (GAPA) and Alcohol Focus Scotland are delighted to co-host the Global Alcohol Policy Conference which will be held in Edinburgh, Scotland from 7-9 October 2015. The key themes for the conference are: implementing effective alcohol policies (and barriers to doing so); building support for protecting children’s right to grow up free from alcohol marketing; and building a global network.

DATE: 12 – 14 October 2015
DETAILS: Each year the Australasian Therapeutic Communities Association (ATCA) hosts an international conference bringing together professionals working in therapeutic communities, researchers and clinicians in the Alcohol and Drug (AOD) field and affiliated areas. Therapeutic Communities (TCs) are an integral element of a comprehensive response to drug and alcohol issues in our community, nationally and internationally. This year’s overall conference theme will be ‘Partnerships in Treatment,’ which will focus on the numerous partnerships that are integral in providing a therapeutic community, which includes the client, their families and support networks, including the health boards, justice and corrections departments, community agencies, bi-cultural & multicultural relationships.

DATE: 17 – 18 November 2015
DETAILS: This will be the second Australian conference to showcase successful programs/approaches in addressing complex needs - with the broader purpose of identifying what works and how. The first conference in 2013 was a huge success - leading to the establishment of the National Complex Needs Alliance. It has long been acknowledged that people with complex needs often fall through the cracks in service delivery – between national and jurisdictional service delivery, between government and non-government services, and between services delivered by different portfolio agencies. This conference seeks to identify and showcase successful collaborative efforts in service delivery, with a view to informing whole-of-government approaches to policy and program development.

DATE: 6 – 9 April 2016
DETAILS: Although there have been thousands of published articles in FASD in general, there has been limited research specifically on adolescents and adults with FASD or on individuals across the lifespan. This interactive 2016 conference will provide an opportunity to be at the forefront of addressing these issues. Leveraging the experience of the diverse group of professionals, researchers, students, families and individuals with FASD who attend to stimulate the discussion of research, evidence for practice, models, and ideas to expand our knowledge of how we can sustain and enhance the lives of those with FASD.
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