The Loop - e-news
National Organisation for Fetal Alcohol Spectrum Disorders Australia
[ Issue #26, October 2015 ]
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Dear Members & Supporters,
This month in “The Loop”
This week I join with Terri to profile the reaction to a recent 4 Corners episode on FASD called "Hidden Harm". The response was phenomenal. There were 112 enquiries through the website and 56 callers seeking information and/or support via our 1300 number. There were 15,953 hits on our website during the week following, over 135 new Facebook 'Likes', and nearly 20,000 people reached through our Facebook posts.

To NOFASD Australia, these are overwhelming numbers but more importantly it demonstrates the level of concern and validates the service NOFASD Australia provides. The indications are the public are not aware of the risk from lower risk drinking in pregnancy and people want to know about FASD. It is important to remind people, too, that living with FASD is not a life sentence. With knowledge and understanding of brain difference and with appropriate supports individuals and families can know success.

Profiling FASD and the response to NOFASD Australia are good reasons for you to know that NOFASD Australia's future is not secure. The Australian Government currently funds the organisation under the Health System Capacity Fund. At the end of 2015, this agreement ends.  Faith's List has been encourage your ongoing support for NOFASD Australia so that the organisation can ensure the voices of parents and families are represented, the potential and possibilities for those living with FASD grows and to continue to educate the community and to advocate for prevention.

Faith's List is named for an 8 year old girl who lives with FASD. She had an idea about helping others and with the support of her family organised an afternoon tea party, and successfully raised funds for sick children. Faith does not need a school report to measure her success, her social awareness and kindness to others is what really matters. Children, adolescents and adults living with FASD have individual strengths and it is up to us to help them discover, nurture and encourage their strengths.

For a woman who phoned our 1300 number a new story is worth telling too. Sally is now retired. She lives in a remote part of Australia and tells me she lives a life of "abundance." However, Sally watched 4 Corners and could not believe how closely the stories were to her own. She detailed her early life history and told me her mother used Bex tablets, beer and cigarettes every day and when Sally was born prematurely she was not expected to live. Sally could not read until she was 12 years old but now reads perhaps 3 books a week. She described herself as having been "stupid and worthless all my life". She revealed how instructions often need to be heard 2-3 times and that in order to complete tasks; she has to first walk through the task in her mind. We talked about the fact that Sally reads, is able to speak in public, has been employed all her adult life and has managed to achieve great things leading to her sense of "abundance." Brain difference might mean information processing is difficult for Sally. Despite this, she has developed her own strategies to help her manage. A wonderful conversation, a fascinating story and a very warm and courageous woman, Sally’s story affirms that FASD is not a new problem. FASDs have always been in our society but until the ABC took up the story, invisible to most and misunderstood by many.


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,

Vicki Russell, CEO
and 
Terri Baran
Social Media & Administration Officer

NOFASD Australia does not necessarily agree with the articles below. They are provided for interest purposes only.

 
Real Stories 

Every alternate month this section of the newsletter will feature real stories from real people.  Want to share your story? Contact Terri at terri@nofasd.org.au - your privacy is of utmost importance to us and we will omit or replace all names and locations. 


We've all heard the story of the desperate little Dutch boy, who put his finger in the dike only to see water start to escape from another hole. I can't tell you how many times during each school week I feel that way.
Our son has just started mainstream secondary school. We are immensely lucky that he attends a wonderful school. We have been talking with them for more than a year, working with them to make this transition as smooth as possible. We've passed along binders full of information about FASD. Our son is well-known to many of the teachers since he has been attending holiday programs at the school for years. ... But even when everything seems to be going right, the days can be fraught with hidden trigger points, and moment to moment things can begin to give way. As a parent, it's so tiring because you can’t turn your back, let down your guard, or lose concentration for a nanosecond. If you do, you too might find yourself drowning when the crash that will follow happens.

I was asked recently, "What is the hardest part of parenting a child affected by FASD?" I was rather stumped by how to answer the question. Should I say – it's all hard? Because it is. That makes it sound like it is only hard and nothing could be further from the truth. I find great joy in parenting Little Man but there are certainly hard parts. Besides it feels like a brush off and really it does nothing to help people understand. So then, what do I say? What is the hardest part? ... Today for me, the hardest part is feeling like I've failed him and not for the first or last time. ... The hardest thing is listening to him cry because "Nobody doesn’t like me. I must just be bad all the time." The confusion and alienation he suffers. For me, for today - That I'd say is the hardest part.
 
Of Special Interest
4 Corners – FASD: Hidden Harm

On the 2nd November, 4 Corners aired an episode about FASD.


"In this confronting story, we take you into the lives of three everyday Australian families grappling with the consequences of drinking in pregnancy.
The children face a devastating range of problems, from behavioural issues to learning difficulties, collectively known as Foetal Alcohol Spectrum Disorder.
And it's much more common than you might think. Best projections indicate it could affect more than half a million Australians.
We go inside Australia's first dedicated clinic where specialists are diagnosing and tackling the disorder, and warn that some children diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) are actually suffering the effects of foetal alcohol exposure.
The doctors also caution that Australia's heavy drinking culture overshadows the concerns we should have about women drinking alcohol in pregnancy."

National News and Media
Screening juveniles for Fetal Alcohol Spectrum Disorder (FASD) could help break the cycle of youth crime, leading paediatricians and youth justice workers say. Catherine Crawford, a West Australian children's court magistrate, has advocated screening children who go before the court for FASD. "There are a significant number of young people that are dealt with in the court system that may be affected by neuro disabilities," Ms Crawford said. "That affects their behaviour. And unless the court has information about that, the sentence may be imposed which does not take into account that health issue which may been therapeutic intervention to change that behaviour."

West Australian courts look set to be given access to screening for brain damage and developmental delays caused by Fetal Alcohol Spectrum Disorder (FASD). The test could change the outcome of cases, but disability advocates warn it could also put more people at risk of indefinite detention for the mentally impaired.

FASTRACK Clinic is coming to Perth!
FASTRACK stands for FAS Training, Research and Assessment Clinic for Kids. The FASTRACK clinic will be commencing in December in Perth and will offer assessment and diagnosis for children who may be suspected of having FASD. The clinic will operate in collaboration with Associate Professor Carmela Pestell, Director of the Robin Winkler Clinic, School of Psychology, University of Western Australia, Crawley. The Robin Winkler clinic will accept referrals from a GP for children aged between birth and 14 years. The clinic will operate as a private clinic with billing via Medicare, however, families will be required to make a gap payment to cover the full cost of assessment. A parallel outreach program will be offered for youth who have entered the Juvenile Justice system. Dr Amanda Wilkins and Dr Raewyn Mutch were successful in obtaining a grant from the Youth Justice Innovation Fund, Department of Corrective Services to provide this service to youth. In addition to providing a clinical service, the FASTRACK clinic aims to build capacity within the health sector by education and training for neuropsychology students and health professionals. FASTRACK will also collaborate with the Telethon Kids Institute and other FASD clinics around the country in conducting research into FASD and its treatment.
Enquiries to: Dr Carmella Pestell, C/- Robin Winkler Clinic UWA
Phone: 6488 2644
Robin Winkler Clinic, School of Psychology (M304), The University of Western Australia, 35 Stirling Hwy, Crawley WA. clinic-psy@uwa.edu.au

This month's Alcohol, Pregnancy & FASD Research Program newsletter is now available from the Telethon Kids Institute website. Includes new projects, project updates, info from the FASD Clinical Network and Clinicians Forum, and NHMRC Grant Success – "Reducing the Effects of Antenatal Alcohol on Child Health" Centre for Research Excellence and "Making FASD History in the Pilbara: An evidence based prevention intervention".

The evaluation team invites people with disability, and their families and carers in the trial sites and those who may not yet be eligible or are outside of the current trial sites to take part in the evaluation. Questions include experiences of disability supports, and the NDIS and the impact they have having on their lives. This will help build a picture about the introduction of the NDIS to make sure that it is implemented across Australia in the best way possible. Hearing what the people who are most affected have to say will help to guide the future development of the NDIS.

The first thing Sally did when she walked into the room was ask the curly-haired, bespectacled American if she could give him a hug. She hadn't met him before, but this grandmother of four made the trip into Melbourne from her home near Geelong to tell him he had changed her life. And – most importantly – the life of her young grandson Harry, who was born drug-addicted to brutal and neglectful parents that he lived with before he was removed and taken into her care.

A major Not for Profit disability provider claims the new National Disability Insurance Scheme's price guide for service providers will prove disastrous for both the Not for Profits and the people with disability that they are trying to support. CEO of Windgap Foundation, Serhat Oguz, said the rollout of the NDIS would be positive for people with disability who have been eagerly awaiting progress on the scheme, especially with the announcement of the roll out in New South Wales from July 2016. But he said the current hourly rate on offer for service providers of an initial $41 per hour, would be "disastrous" for the sector, causing many providers to close operations and ultimately impacting directly on people with disability.

New Social Services Minister Christian Porter believes Australia is spending too much money and has flagged cuts to carer and disability payments. In his first detailed interview since being named Social Service Minster by Prime Minister Malcolm Turnbull, Porter said that his portfolio needed to be "a big contributor to slowing the growth of expenditure down". Porter indicated to broadcaster Alan Jones that the government would look to disability and carer payments as a way to cut spending.
Resources
Molly N Millians, Current Developmental Disorders Reports, September 2015
The effects from prenatal alcohol exposure (PAE) can cause a range of neurobehavioral deficits that impact learning and functioning in school. As a result, children affected by PAE have diverse learning needs and may experience problems in school.

A NOFAS Webinar. Presented by Deb Evensen MA. Learn how prenatal exposure to alcohol permanently alters a developing brain leading to lifelong learning and behavioural challenges; how working with the developmental age of students with FASD is the foundation for developing positive behavioural outcomes; and specific strategies to improve academic outcomes and behavioural success for students with FASD.

A key to supporting students with Fetal Alcohol Spectrum Disorder (FASD) is having a good understanding of FASD and how individuals with FASD are impacted. This resource provides an explanation of FASD, its impact on the brain as well as explores behavioural patterns in students with FASD. Strategies for designing classroom instructions and routines to support students with FASD are also highlighted. The resource was developed by Dr. Jacqueline Pei and her colleagues, Stephanie Hayes and Alethea Heudes.

One of the key aspects of clinical interviews is the process where a psychologist gathers reasonably believable information from a client. In some cases, however, the psychologist may detect apparently nonsensical information. For example, facts presented during an interview may be conflicting, inaccurate, or at odds with the age or socioeconomic status of the client. In such situations, the psychologist must sift through the available information to determine its accuracy. Psychologists must remember that some clients intentionally lie, whereas others unintentionally deceive by using fabricated experiences, dates, descriptions, and anecdotes. These unintentional deceptions may be the result of confabulation.

Tapping into "muscle memory" can be a great strategy for studying. That's especially true for kids with learning and attention issues. Kids all have different learning strengths. Some may take in information better by seeing, some by hearing, and some through physical activity. That's why multisensory teaching methods can be so effective. By getting information through different senses, kids can use their strengths to learn. And they gain "muscle memory" as they do.

Ray's Night Out: New iPhone app targets young people's alcohol use
Research has shown that excessive alcohol use is widespread in young people; more than doubling the risk of injury in young people aged 15 to 25. With this in mind, the e-Tools for Wellbeing team – a partnership between the Young and Well CRC and Queensland University of Technology – have developed 'Ray's Night Out', a new app providing young people and those working with them an accessible, engaging resource to further develop their understanding of alcohol and drinking limits.

International News and Media
A new clinical report from the American Academy of Pediatrics (AAP) identifies prenatal exposure to alcohol as the leading preventable cause of birth defects and intellectual and neurodevelopmental disabilities in children. The report, "Fetal Alcohol Spectrum Disorders" in the November 2015 issue of Pediatrics (published online October 19) stressed that no amount of alcohol should be considered safe to drink during any trimester of pregnancy.

Why do people get so bent out of shape about drinking while pregnant? [USA]
Women shouldn't drink when they're pregnant – absolutely no alcohol at all, according to the American Academy of Pediatrics. But it's been getting a lot of pushback about that edict. After [NPR] reported on it ... the comment stream exploded with hundreds of people arguing over whether moderate drinking in pregnancy is safe.

The extent to which babies are being harmed because their mothers are drinking alcohol during pregnancy needs to be publically acknowledged, a specialist warned yesterday. Dr Adrienne Foran, a neonatologist in the Rotunda and Temple Street hospitals in Dublin, described the risks faced by unborn babies whose mothers are drinking as the "elephant in the room". She said: "It is something very controversial at the moment." The after-effects are seen in children who are coming back at age two or three with learning difficulties, she told the Joint Oireachtas Committee on Health and Children.

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 Fetal Alcohol Spectrum Disorder (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.

Children adopted from orphanages or in foster care have a high rate of fetal alcohol syndrome and other physical, mental and behavioural problems related to alcohol exposure before birth, according to a new review of past studies. Among those children, researchers found that rates of alcohol-related problems – which can include deformities, mental retardation and learning disabilities – were anywhere from nine to 60 times higher than in the general population.

A new study published in Pediatrics shows that early maturing girls given the most parental autonomy had the highest rates of alcohol abuse, with intoxication frequency increasing an average of 234 percent. Inadequate supervision by parents during early adolescence forecasts a host of behaviour problems, including problem drinking. The study tests the hypothesis that premature autonomy granting at the beginning of secondary school predicts escalating alcohol abuse across the critical ages of 13 to 16, when youth typically begin to consume alcohol. Read the study here.

A proposed change to statewide regulations may ease the path toward special education services for Alaska students with fetal alcohol spectrum disorders by expanding the range of professionals who can diagnose the condition, according to medical and special education professionals. Under current regulations, students are eligible for special education services, in part, if a physician diagnoses them with a health impairment that adversely affects their performance in school. The change would broaden that for FASD to include diagnoses from advanced nurse practitioners certified in psychiatry or family practices.

Sept. 9 was Fetal Alcohol Spectrum Disorder (FASD) Day in Saskatchewan, and organisations in the province raised awareness to try to dispel some myths about the disorder. There's a stigma about mothers with children who have FASD since the disorder is viewed as preventable, but part of what Leslie Allen with the FASD Network wants to do is dispel this notion – effects of alcohol in children have been documented as little as two weeks after conception, when a woman may not know she's pregnant.

In September, clients of several hair salons throughout Utah were treated not only to a haircut and style, but to valuable information as well. As part of the "We Love Babies" campaign, about 72 hairstylists throughout Cedar City were encouraged to engage their clients in a conversation about Fetal Alcohol Spectrum Disorders. Each stylist wore a "We Love Babies" pin to help their clients open the door to an informative discussion about the negative effects of drinking alcohol during pregnancy.

Program helps families coping with fetal alcohol syndrome [USA]
When Nora Boesem first heard a fetal alcohol syndrome diagnosis for three of her foster children, it wasn't followed up with the type of support she needed. "I was told, you're lucky you haven't finalized the adoption yet," she recalled. "Good luck, there's nothing you can do." Boesem, who is a Family Pathways counsellor with Behavior Management Systems in Rapid City, decided to do something about it. She began researching, working with other families facing the same challenges and most recently began a program called Facing FAS.

Pregnant women should not touch a drop of alcohol, because there is no evidence of a "safe" threshold, doctors have said. Writing in the BMJ, experts in paediatrics and pregnancy said women planning a family were being given too much "conflicting advice" which could put their child at risk.

Latest Research
This edition of FASD in Review examines the implications for FASD services in the current DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) and in the ICD-10-CM (International Classifciation of Diseases), released on October 1, 2015. An ICD-10-CM code will now be needed for a diagnosis or procedure to be submitted for reimbursement for all Health Insurance Portability and Accountability Act (HIPAA) covered entities. This FASD in Review crosswalks available codes in the ICD-10-CM and the DSM-5 that may be applicable to the effects of prenatal alcohol exposure, and discusses key issues and gaps in reimbursement for identifying and addressing FASD.

Maternal Iron Deficiency Worsens the Associative Learning Deficits and Hippocampal and Cerebellar Losses in a Rat Model of Fetal Alcohol Spectrum Disorders
Huebner SM., Tran TD., Rufer ES., Crump PM., and Smith SM., Alcoholism: Clinical and Experimental Research, 24 September 2015, doi: 10.111/acer.12876
Gestational alcohol exposure causes lifelong physical and neurocognitive deficits collectively referred to as fetal alcohol spectrum disorders (FASDs). Micronutrient deficiencies are common in pregnancies of alcohol-abusing women. Here the researchers show the most common micronutrient deficiency of pregnancy—iron deficiency without anemia—significantly worsens neurocognitive outcomes following perinatal alcohol exposure.

Fetal alcohol spectrum disorders: Clinical phenotype among a high-risk group of children and adolescents in Korea
Lee H-S., Jones KL., Lee HK., and Chambers CD., American Journal of Medical Genetics Part A., 17 September 2015, doi: 10.1002/ajmg.a.37392
Little is known about the prevalence and phenotype of fetal alcohol syndrome (FAS) or spectrum disorders (FASD) in Korea. This study was performed to describe the distribution of alcohol-related physical features in a genetically homogeneous sample of children and adolescents in institutional settings in Korea. Children and adolescents receiving services in one of seven institutions in Seoul were screened for growth deficiency. The result of this study suggests that an FASD phenotype variant related to ethnic differences in the range of defects specific to prenatal alcohol exposure may be present in the Korean population.

Topper LA., Baculis BC., and Valenzuela CF., Journal of Neuroinflammation, 4 September 2015, doi: 10.1186/s12974-015-0382-9
Fetal alcohol exposure is a leading cause of preventable birth defects, yet drinking during pregnancy remains prevalent worldwide. To model heavy, binge-like alcohol exposure during the third trimester of human pregnancy, rats were exposed to alcohol vapor inhalation during postnatal days 3-5. Findings suggested that heavy, binge-like third trimester-equivalent alcohol exposure has time- and brain region- dependent effects on cytokine levels, morphological activation of microglia and astrocytes, and neuronal survival.

Overexpression of Serum Response Factor in Neurons Restores Ocular Dominance Plasticity in a Model of Fetal Alcohol Spectrum Disorder
Foxworthy, WA. and Medina AE, Alcoholism: Clinical and Experimental Research, 6 September 2015, doi: 10.1111/acer.12844
Deficits in neuronal plasticity underlie many neurobehavioral and cognitive problems presented in fetal alcohol spectrum disorder (FASD). The researchers' laboratory developed a ferret model showing that early alcohol exposure leads to a persistent disruption in ocular dominance plasticity (ODP). The findings show that an overexpression of serum response factor (SRF) in neurons can restore plasticity in the ferret model of FASD, but only in areas near the site of infection. This contrasts with SRF overexpression in astrocytes which restored plasticity throughout the visual cortex.

Should women abstain from alcohol throughout pregnancy?
Mather M., Wiles K., and O’Brien P., BMJ, 6 October 2015, doi:10.1136/bmj.h5232
Everyone agrees that current advice on alcohol is inconsistent and confusing, but whereas Mary Mather and Kate Wiles conclude we should move to a clear recommendation to abstain, Patrick O'Brien thinks it is wrong to assume pregnant women cannot understand the evidence.

Upcoming Events
Remember to visit our events page on our website for a full listing of upcoming events.

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. AS those individuals diagnosed with FASD continue to age, the “need to know” across a broad spectrum of areas is becoming critically important for identifying clinically relevant research questions and directions. This interactive 2016 conference will provide an opportunity to be at the forefront of addressing these issues. Professionals, researchers, students, families and individuals with FASD all welcome.

DATE: 12 – 14 September 2016
DETAILS: The 4th European Conference on FASD will be held at the prestigious campus of the Royal Holloway University, London, from 12th to 15th September 2016. The research symposium will take place from the 12th to the 14th with an accredited Professional Training Day to be held on the 15th September 2016. This conference brings together academics, educators, non-governmental organisations and charities, legislators and politicians, lawyers and individuals involved in the criminal justice system, birth and adoptive families alongside individuals who themselves have FASD; shared learning will help promote the understanding of this disorder in the UK, Europe and internationally. The conference will cover a wide range of topics including prevention, social determinants, diagnosis, epigenetics, psychological profiles, behavioural management, education, prevalence, family support, criminal justice system difficulties, social care needs, practical management, pharmacology and other cutting edge research that may be submitted or invited.

DATE: 3 – 7 April 2017
DETAILS: This dynamic event will bring together researchers, practitioners, academics, administrators, policy makers, industry representatives, students and stakeholders involved in public health from all over the globe. They will share and enhance knowledge about the latest advancements in public health, challenges and opportunities, collaborations and advancements. The International and National Congress Committee look forward to welcoming you to the beautiful city of Melbourne.

If you have an upcoming FASD-related event, big or small, please forward the details to Terri at terri@nofasd.org.au.  We'd be more than happy to help promote it. 

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