FASD News

Links to research, articles and information about FASD

Call for National Plan to Combat FASD

MEDIA RELEASE

Call for National Plan to Combat Fetal Alcohol Spectrum Disorders (FASD)

18 January 2012: Australia’s leading alcohol research and education body has called for a comprehensive Commonwealth-led National Action Plan to tackle Fetal Alcohol Spectrum Disorders (FASD) – the most common preventable cause of birth defects in Australia.

In Australia there are currently no national prevention strategies to inform people of the risks of alcohol consumption during pregnancy, there is no formal diagnosis structure and services for people with FASD are minimal or non-existent.

Foundation for Alcohol Research and Education (FARE) Chief Executive Michael Thorn said that a national strategy for the prevention and management of FASD is long overdue and vitally important.

“For too long FASD has been the ‘invisible disability’; at worst ignored, at best addressed in an ad-hoc manner which has resulted in critical gaps in the prevention, intervention and management of FASD,” Mr Thorn said.

FARE today released its joint submission (together with the Public Health Association of Australia) to the Parliamentary Inquiry into Foetal Alcohol Spectrum Disorders.

Late last year the Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin, and the Minister for Health and Ageing, Nicola Roxon, asked the House of Representatives Standing Committee on Social Policy and Legal Affairs Committee to inquire into and report on the incidence and prevention of foetal alcohol spectrum disorder.

The joint submission calls for funding of the first ongoing national public education campaign to promote the National Health and Medical Research Council’s guidelines to reduce health risks from drinking alcohol, as well as for mandatory health warning labels for alcohol products sold in Australia.

“Australia risks lagging behind similar countries, such as Canada, in preventing and managing FASD. This is disappointing as FASD is preventable, and people born with FASD have it for life”, Mr Thorn said.

FARE also recommends funding of a full-scale FASD prevalence study in Australia, improved screening for FASD, and the adoption of a national standardised diagnostic tool for FASD.

In addition, FARE recognises that far more needs to be done to support people with FASD and their families and carers, including recognising FASD as a disability and ensuring people diagnosed are provided with a treatment and management plan tailored to their needs.

Mr Thorn urged the Inquiry to recommend a national plan as a matter of priority.

“This year, we have a historic opportunity for the Commonwealth Government to take the lead in the efforts to significantly reduce alcohol-related harms and make a substantial difference in the lives of people with FASD”, Mr Thorn said.

– ENDS –

Michael Thorn is available for interview.

Media Contact: Sam North, phone: 0407 941 447

The submission is available for download at www.fare.org.au/wp-content/uploads/2011/07/FASD-Inquiry-Submission.pdf

Foundation for Alcohol Research & Education (FARE): FARE – formerly the Alcohol Education and Rehabilitation Foundation – is an independent, charitable organisation working to prevent the harmful use of alcohol in Australia. Since 2001, FARE has invested over $115 million in research and community projects to minimise the impact of alcohol misuse on Australians. Through our national grants program and commissioned research, the FARE has established itself as a leading voice on alcohol and other drugs issues. We work with community groups, all levels of government, police, emergency workers, research institutions and the private sector to address alcohol-related problems. For further information visit our website: www.fare.org.au

Facts about Fetal Alcohol Spectrum Disorders (FASD)

  1. There is currently no known safe level of alcohol consumption during pregnancy. For this reason the National Health and Medical Research Council recommended that ‘not drinking during pregnancy is the safest option’ (1).
  2. Alcohol consumption during pregnancy can cause irreversible damage to the fetus, resulting in conditions referred to as FASD; a non-diagnostic umbrella term for the range of disabilities that result from prenatal alcohol exposure (2, 3).
  3. FASD are the leading preventable cause of non-genetic, intellectual disability in Australia. While there is no cure for FASD, early detection and intervention can assist individuals, their families and carers to develop coping strategies and mechanisms for everyday life (4, 5).
  4. FASD are often described as an ‘invisible’ disability (6) as individuals may not exhibit any of the facial or physical characteristics associated with the condition. However prenatal alcohol exposure can result in problems with behaviour, impulse control, memory, speech and language development, impairment of vision and hearing and difficulty with judgment and reasoning (7).
  5. People with FASD are more likely to experience mental health issues, alcohol and drug problems, trouble with the law, disrupted school experience and exhibit inappropriate sexual behaviours. Due to underlying brain damage, people with FASD can often struggle with day-to-day living, managing money and sustaining regular employment4 and are also believed to be over-represented in the criminal justice system (8,9). In Australia FASD is not recognised as a disability, and this precludes those with impaired mental functioning from receiving the help and support they require to manage their condition.
  6. The prevalence of FASD in Australia is largely unknown due in-part to a lack of agreed diagnostic criteria and clinical guidelines, a lack of understanding about FASD among the medical profession and lack of routine screening of women about their alcohol use during pregnancy.
  7. Prevalence rates for FAS, which is one of the conditions within the spectrum, are between 0.06 and 0.68 per 1,000 live births in the general population. Among Indigenous Australians, FAS is estimated to be between 2.76 and 4.7 per 1,000 births (10).
  8. FASD is overrepresented among people experiencing disadvantage, with factors such as lower socioeconomic status, malnutrition, higher age of mother, loss of traditional culture and level of education all contributing to higher rates of FASD (4).

References

(1) National Health and Medical Research Council. (2009). Australian guidelines to reduce health risks from drinking alcohol. Canberra: Commonwealth of Australia.

(2) Barr, H.M. & Streissguth, A.P. (2001). Identifying maternal self-reported alcohol use associated with Foetal Alcohol Spectrum Disorders. Alcohol: Clinical and Experimental Research, 25, 283-287.

(3) Nguyen, T.T., Coppens, J & Riley, E.P. (2011). ‘Prenatal alcohol exposure, FAS and FASD: An introduction.’ In E.P. Riley, S Clarren, J Weinberg & E Jonsson (Eds.) Fetal Alcohol Spectrum Disorder: Management and Policy perspectives of FASD (pp.1-13). Weinheim, WILEY-VCH Verlag GmbH & Co. KGaA.

(4) O’Leary, C. (2002). Foetal Alcohol Syndrome: A literature review. National Alcohol Strategy 2001 to 2003-04 Occasional Paper. Canberra: Commonwealth Department of Health and Ageing.

(5) Streissguth A., Bookstein F., Barr H., Sampson P., O’Malley K, and Young J. (2004). ‘Risk factors for adverse life outcomes in Foetal Alcohol Syndrome and Foetal Alcohol Effects.’ Journal of Developmental and Behavioural Pediatrics, 25(4), 228-238.

(6) Russell, V. (2008). Living with Foetal Alcohol Spectrum Disorder: A guide for parents and caregivers. Drug Education Network Tasmania, Communities for Children & Stronger Families.

(7) Alcohol, Pregnancy & FASD website (2011). Telethon Institute for Child Health Research.

(8) Riley, E. Clarren, S., Weinberg, J. and Jonsson, E. (Eds) (2011). Fetal Alcohol Spectrum Disorder: management and policy perspectives of FASD. Wiley-Blackwell, Germany.

(9) House of Representatives Standing Committee on Aboriginal and Torres Strait Islander Affairs (2011) Doing Time – Time for Doing – Indigenous Youth in the criminal justice system. Chapter 4: the link between health and the criminal justice system. Commonwealth of Australia.

(10) Peadon, E., Fremantle, E., Bower, C. and Elliott, E. (2008). ‘International Survey of Diagnostic Services for Children with Foetal Alcohol Spectrum Disorders’, BMC Pediatrics 2008, 8:12.

Mental Health Roadmap Submission

Australia’s “Draft Ten Year Roadmap for Mental Health Reform”

On the 16th January 2012 the Department of Health released the draft document which will be used by the federal and state governments to map the reform of Australia’s mental health system for the next 10 years.

The Russell Family Fetal Alcohol Disorders Association (rffada) represents over 700 individuals and organisations from around Australia. Many of the people and organisations on our database understand the deep-rooted relationship between Fetal Alcohol Spectrum Disorder (FASD) and mental health.

Statistics extrapolated from Canada and the United States (because we have none of our own to date), finds that there could be more than 200,000 affected individuals in Australia. Of those 200,000 people, 98% will have mental health problems (sources for this information available on request).

The rffada suggests that without incorporating information relating to the following dot points, the needs of a significant proportion of the Australian mental health community and their families will not be met.

  1. The importance of the nine months prior to birth in relation to the overall physical and mental health of the individual
  2. Ninety eight percent of people prenatally affected by alcohol will have a mental health condition
  3. Over 451,000 children were identified by the ANCD as living in families where drug and alcohol consumption is problematic
  4. That the current dual-diagnosis model (drugs and/or alcohol and mental health) become a tri-diagnosis model incorporating FASD as the third diagnosis
  5. The understanding that FASD is an organic brain injury often overlooked as the primary disability under which a variety of ensuing conditions occur, one of which is mental health
  6. Information provided by parents and carers must be taken into consideration as part of the assessment process e.g. that the individual has no insight into his or her needs; that the individual requires certain support etc.)
  7. The expectation that people can make an educated and informed decision because they say they can
  8. While people with FASD can relate the name of their disability and even the co-occurring conditions, they are unlikely to be able to accurately describe the services, supports and programs which can best support them and progress them to the next level
  9. While people over 18 are considered to be adults, adults with FASD may be operating at the developmental age of a 12 year old

Unless Fetal Alcohol Spectrum Disorder is named as one of the leading causes of mental health conditions in Australia, those families currently living with FASD will not receive the support they need.

While the parents and carers of children with Autism receive acknowledgement, understanding and compassion: acknowledgement that their job is a hard one; understanding that parenting a child with Autism takes a huge emotional toll and compassion for the grief and loss experienced; parents and carers of children with FASD receive the contrary.

They experience a lack of acknowledgement that they are dealing with a child with a disability – the reason is twofold: Firstly because the child looks ‘normal’ and talks well; and secondly because only 2% of medical professionals feel comfortable dealing with FASD.

They experience a lack of understanding of how difficult it is to parent a child with FASD since they are seen as ‘bad’ parents since the child’s behaviour is seen as a parenting problem not a brain injury — and instead of compassion, they experience guilt, shame and fear.

Russell Family Fetal Alcohol Disorders Association

30th January 2012

Fetal Alcohol Forum – Issue 6 December 2011

NOFAS-UK have published Issue 6, 2011 of their newsletter.

From the newsletter…

As the FETAL ALCOHOL FORUM has gained more recognition, so too has the issue of Fetal Alcohol Spectrum Disorder (FASD). Millions of people around the world live with this challenging disorder. We hope, by putting FASD research on the international medical radar, support for all the people affected will increase and
education will help decrease the number of babies born with alcohol related brain damage.

In this issue you will find abstracts of FASD studies from 28 countries along with a selection of articles, full studies and FASD news.

As always, we begin with original articles contributed by leading FASD experts: Albert E. Chudley, MD, FRCPC, FCCMG, Canada; Piyadasa W. Kodituwakku, PhD, USA; Carmen Rasmussen, PhD, Canada and researcher Leigh Anne Davies who worked closely with Professor Denis Viljoen in South Africa.

In the 2nd section you will find abstracts of studies linking alcohol to DNA damage, investigating gene
interaction and bio-markers, new studies on low level and moderate drinking, the effects of early
postnatal ethanol exposure, prevalence studies in Ireland and Australia recording higher alcohol consumption in pregnancy than previously estimated, predicting a rise in FASD births, and thought provoking articles by FASD legal experts from ‘THE JOURNAL OF PSYCHIATRY & LAW’.

Download the PDF here (3.9MB)

Telethon Institute Launched

The new Telethon Institute For Child Health Research, Alcohol, Pregnancy and FASD website has just been launched to showcase current research projects and achievements in the field and to provide general information on alcohol, pregnancy and Fetal Alcohol Spectrum Disorders for health professionals; researchers; parents, carers, teachers and others working with children with a FASD; and members of the general public.

The address is alcoholpregnancy.childhealthresearch.org.au. The TICHR would greatly appreciate your feedback on the site, including any additional information, events, training or links that you think may be useful or relevant to health professionals, researchers or the general public.

 

Webcasts from International FASD Conference

Webcast videos from the 3rd and 4th International Conference on Fetal Alcohol Spectrum Disorder are available at the following pages.

video icon Webcasts from 3rd Conference

video icon Webcasts from 4th Conference

Quotes

Dr Louise Farrell, vice-president of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, said while the jury was still out on whether small amounts of alcohol during pregnancy was harmful, it was disappointing that so many pregnant women were still smoking, given the clear health warnings against it. “The evidence to support the advice of absolutely no alcohol at all at any stage of pregnancy is pretty weak,” she said. “And I think that when the evidence for your advice isn’t very strong it probably won’t be observed as closely.”

Quote from Dr Kieran O’Malley Belfast Ireland with permission
It always fascinates me that it is regarded as fact that any smoking is bad in pregnancy but alcohol is so complicated. I would love to see the evidence about low dose cigarette smoking in pregnancy and its long term effects on infants and children which the MDs have accepted with no argument. Obviously the mixed messages about alcohol will continue to create the next generation of alcohol effected children. And ‘subtle epigenetic ‘ issues such as the effect of prenatal alcohol on the developing brain (structure and neurochemistry) and its role in kindling early alcohol craving will continue to be ignored.

Kieran

Quote from David Boulding, Lawyer, FASD Consultant and international presenter on FASD, Canada with permission
The article (above) reflects the independent streak in Australians. Perhaps the learned scientist means Australian evidence is weak. Not surprizing as Australia is 25 to 35 years behind Canada in fetal alcohol research. Dr Sterling Clarren is one of the world’s leading authorities on fetal alcohol, and he says: ‘the only true statement about alcohol and pregnancy is that no alcohol equals no risk’. The rest of the world recognizes that Dr Clarren is correct. Thousands of children will have diminished lives if Australians don’t listen to the ‘no alcohol is safest’ message…your choice Australia!

David

 

Inquiry into FASD

The Social Policy and Legal Affairs Committee has requested submissions for an inquiry into the incidence and prevention of Foetal Alcohol Spectrum Disorder.

View the call for submissions here (.docx)

Submissions can be emailed to spla [dot] reps [at] aph [dot] gov.au or posted to:

Social Policy and Legal Affairs Committee
House of Representatives
PO Box 6021
Parliament House
Canberra ACT 2600

Submissions are requested by Friday, 9 December 2011.

November Newsletter

Good morning – I would like to thank you all for supporting those people living with FASD in Australia.  Thank you to those people who introduced colleagues and friends to the rffada.

It’s a shame that the majority of the news below is from overseas. If you have FASD news from your organisation please let me know and I will send it around the rffada database. The NPY Women’s Council recently won awards for their poster, DVD and other FASD material. Let’s advertise the good work that we are doing in Australia in alcohol and pregnancy and FASD. Let me know, I will send it around in our newsletter and then place it on the rffada website.

The House of Representatives (Federal) Standing Committee on Social Policy and Legal Affairs Chaired by Member for Moreton Graham Perrett has today announced an Inquiry into Fetal Alcohol Spectrum Disorders (FASD). The Inquiry was referred to the committee by Ministers Jenny Macklin and Nicola Roxon Submissions by interested persons and organisations that address the terms of reference are due by 9 December 2011.

For further information go to http://www.aph.gov.au/house/committee/spla/fasd/index.htm

Member news update

Since last update we now have over 560 organisations and individuals on our database supporting the rffada, FASD and those living with FASD – thank you.

We are looking for parents and carers of people with FASD in the Ipswich area.  If you would like to connect with other parents and carers in this area please return email me. Thanks. Anne

rffada News

The Russell Family Fetal Alcohol Disorders Association (rffada) is a not-for-profit health promotion charity with no government funding dedicated to ensuring that individuals affected prenatally by alcohol have access to diagnostic services, support and multidisciplinary management planning in Australia and that carers and parents are supported with a “no blame no shame” ethos.

Terminology for use by professionals when discussing FASD and birth parents

The rffada has been asked to prepare a document which outlines the most appropriate language to use when discussing alcohol and pregnancy and fetal alcohol spectrum disorder.  When discussing pregnant women and alcohol consumption the most appropriate language is that which takes the blame from pregnant women and places it on alcohol.  For example language which states, “when a pregnant woman consumes alcohol”, places a measure of blame on the pregnant woman. If we use language which focuses the listener and reader on the alcohol, “when alcohol is consumed while pregnant” we will have more acceptance of the fact that mothers and fathers are not to be blamed or shamed should they deliver a child or children with FASD.  If we take steps to reduce the blame now, more birth mothers will feel confident in speaking up about the condition. Hundreds of books, tens of thousands of research and scholarly articles and untold public health reports have been generated in the last thirty years. Yet one voice has been mostly silent, the voice of the birth mothers themselves1.  The rffada recommends this way of speaking about alcohol and pregnancy to all who have cause to discuss this condition and its implications.

Posters — all have been distributed however a .pdf version is available for download on rffada.org

Brochures — this brochure has been developed in collaboration with GET A GRIP teenz™ and Training Connections Australia and can also be downloaded here.

Flyer — This flyer has also been developed in conjunction with and and is located in the same place.

National Disability Insurance Scheme

The rffada has made contact with Senator McLucas and the Queenslandand Western Australia State Coordinators of the NDIS regarding the inclusion of FASD in this scheme. The rffada wishes to ensure that there are places for individuals with FASD even though we agree in principal with the NDIS.

FASD News

Characteristics and behaviors of mothers who have a child with fetal alcohol syndrome
Leading experts on FASD, including Louise Floyd of the Fetal Alcohol Syndrome Prevention Team of the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention (CDC), reveal the results of a four-state FAS Surveillance Network study on mothers of children with FAS. Research, Neuro-toxicology and Teratology, October 2011

Number of Indigenous youth in justice system ‘unacceptable’: …annual snapshot of the juvenile justice system has found Indigenous Australians are more than 15 times more likely to be in detention or community supervision than non-Indigenous youths…
ABC Online 

Wayne State to develop a computer-delivered intervention for alcohol use during pregnancy
Researchers at Wayne State University’s Parent Health Lab in the School of Medicine have received funding to develop an online screening, brief intervention, and referral for treatment (SBIRT) program to prevent alcohol use during pregnancy.
Article, Eurek Alert, October 26, 2011

Children with Heavy Prenatal Alcohol Exposure Exhibit Deficits when Regulating Isometric Force
Researchers at San Diego State University have learned children prenatally exposed to alcohol experience deficits in isometric force production that delay their ability to perform basic motor skills.
Research, Alcoholism: Clinical and Experimental Research, October 20, 2011

FASD often an ‘invisible impairment’
Floyd Perras, Director of Siloam Mission of Canada talks about his experience working with a young woman with FASD.
Article,Winnipeg Sun, October 18, 2011

Characteristics and behaviors of mothers who have a child with fetal alcohol syndrome
Leading experts on FASD, including Louise Floyd of the Fetal Alcohol Syndrome Prevention Team of the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention (CDC), reveal the results of a four-state FAS Surveillance Network study on mothers of children with FAS.
Research, Neurotoxicology and Teratology, October 2011

A preliminary study of the neural effects of behavioral therapy for substance use disorders
Drug and Alcohol Dependence, Available online 29 October 2011
Elise E. DeVito, Patrick D. Worhunsky, Kathleen M. Carroll, Bruce J. Rounsaville, Hedy Kober, Marc N. Potenza

Research Campus expert lands big grant for fetal alcohol syndrome research
Dr. Philip May, a leading expert on FASD and 2011 NOFAS Excellence Award recipient, has earned a nearly nine million dollar grant to study the prevalence and characteristics of FASD in the U.S.
Article, Salisbury Post, November 4, 2011

Screen all prison inmates for fetal alcohol syndrome, doctor urges
Dr. Albert Chudley, a leading FASD expert from Winnipeg is encouraging prisons to screen inmates for FASD to reduce the number of repeat offenders through getting those affected the assistance they need before and after they are incarcerated.
Article,Edmonton Journal, November 4, 2011
Effects Of Alcohol Consumption By Pregnant Moms
A recent national survey shows that nearly one third of women consumed alcohol at one point during their pregnancy.
Article, Betty Ford Institute, November 3, 2011
Four-fifths of women drank alcohol ‘close to conception’
According to a recent prevalence study from Coombe Women and Infants University Hospital of Dublin, Ireland, 81% of women reported alcohol consumption close to conception.
Article, Irish Medical Times, November 3, 2011
145 babies had alcohol withdrawal symptoms
New statistics show that over a three year period 145 newborns were born with delirium tremens due to heavy alcohol exposure in the womb.
Article, Irish Independent, November 2, 2011

‘Like’ rffada on Facebook

Discrimination – Have you experienced it?  – I have experienced this (unintentionally I’m sure) when trying to find support and services for my children – I believe that anyone who is a parent or carer of a child with FASD inAustralia has – what can we do about it?  The Raising Children Network website aims to increase awareness of and address discrimination towards parents. Australia has national, state and territory laws to make sure children with disability are not discriminated against, either now or when they are older. If you believe you or your child have experienced discrimination, you can take some fairly simple steps to have your complaint heard.

The resource is located on the main website and can be accessed at http://raisingchildren.net.au/articles/disabilities_antidiscrimination_law.html.