• Thursday 12 July 2012, Broome
• Wednesday 11 July 2012, Bush Meeting, Mimbi
• Tuesday 10 July 2012, Perth
• Thursday 31 May 2012, 8.30am, Committee Room 1R2, Parliament House, Canberra
  More Information and Program
• Thursday 24 May 2012, 8.30am, Committee Room 1R3, Parliament House, Canberra
  More Information and Program

SydneyMorning Herald, online, 10 April 2012

FOSTER parents and public health groups have urged federal politicians to take urgent action to prevent more babies from suffering foetal alcohol spectrum disorder.

FASD receives state, national attention

OVERSEAS

The outcome for infants of Fetal Alcohol Syndrome (FAS) varies, but almost none have normal brain development, according to the National Institute for Health Research. Prenatal brain damage makes learning from mistakes difficult, said Vickie Tinker, …

Teenagers refuse to grow up

The West Australian, Page 11 25-Apr-12

Medical Editor HEALTH RISK WARNING Australian teenagers face more risks from binge drinking unsafe sex

and junk food because they are delaying adult behaviour such as

Alcohol warnings push to save babies

The Canberra Times, Page 3 10-Apr-12

Alcohol warnings push to save babies By Peter Jean Health Reporter Foster parents and public health groups have urged federal politicians to take urgent action to prevent more babies from suffering Foetal Alcohol Spectrum Disorder

Call for labels on bottles to warn of alcohol’s danger to foetuses

Sydney Morning Herald, Page 5 10-Apr-12

FOSTER parents and public health groups have urged federal politicians to take urgent action to prevent more babies from suffering foetal alcohol spectrum disorder.

Call for labels on bottles to warn of alcohol’s danger to foetuses

The Age, Peter Jean, April 10, 2012

Women and Alcohol

OVERSEAS

The American College of Obstetricians and Gynaecologists (ACOG) has recently developed the new “Women and Alcohol” website with helpful information and resources including an iPhone application for screening, brief intervention and referral to treatment.

Website, ACOG, April 2012

Misinformation persists about drinking during pregnancy

OVERSEAS

Each year an estimated 8,500 Minnesota babies are born with FASD and more needs to be done to prevent this costly disorder.

Article, Brainerd Dispatch, April 3, 2012

Bill letting judges consider FASD passes Senate

Alaska’s SB151 bill on including FASD as a mitigating factor in sentencing has unanimously passed in the Alaska Senate.

OVERSEAS

Abuse, violence growing Number of kids in care doubles

The Advertiser, Page 9 5-Apr-12

GOVERNMENTS need to better address parental problems such as mental illness and substance abuse to arrest the increasing rates of child abuse a

My daughter was an alcoholic at 13 A MOTHER’S HEARTACHE

The Mercury, Hobart, Page 12 14-Apr-12

When her daughter was well enough to admit what had been going on Anne says those revelations brought her very close to a breakdown Her mother took her to a private clinic in Melbourne for cognitive testing and was warned she may have suffered permanent brain damage Slurred speech Intense moods very happy angry or sad I doubt it very much kids like to push boundaries take risks explore

Booze bottle warning to mums

The Advertiser, Page 44 14-Apr-12

ALCOHOL bottles should carry clear labels warning women of the detrimental effect drinking can have on unborn babies a parliamentary hearing has been told FASD may affect babies of mothers who drink in pregnancy resulting in developmental difficulties such as speech disorders and abnormal structural developments of the face and

Budget boost for grog reform plan

Northern Territory News, Page 5 14-Apr-12

MORE than 18 million will be spent on the Territory’s grog reforms for Budget 2012 to help fight crime and unruly behaviour Alcohol Policy Minister Delia Lawrie said the extra cash would continue the Government’s work to target problem drinkers and turn them off tap Last year the Government had committed 67 million to the program over five years It has now bumped that total up to 71.5 million

FASD Implementation Forum Report (PDF, 2mb)
(right click to save to your computer)

The results were:

• Image 1 — 10 votes (28%)
• Image 2 — 26 votes (72%)

Lots of news this month. The first Australasian Conference will be held in the middle to late 2013 with the initial support of FARE and offers coming in by Universities if we decide to hold the conference at their facility. We have requested a quote from a conference organiser so we know exactly what we are up against and will start the formation of a steering group with representatives from each state/territory. So far we have representatives from every state/territory and NZ who have agreed to be on the committee. Please keep your diary as free as you can for July August next year.

If you have any news you would like distributed around the individuals and organisations on our database which have now reached 1050, please let me know. Also if you have colleagues or friends who would like to add their names to our list of supporters please let me know.

Kind Regards
Anne Russell

First Australasian FASD Conference to be held in 2013

We have had support from a number of organisations to hold a national (including NZ) FASD conference in Australia. More on this fantastic news as it comes to hand. Donations welcome 

FASD Inquiry next Public Hearing Notice

The Social Policy and Legal Affairs Committee is holding a public hearing for its inquiry into FASD in Sydney on Friday, 13 April 2012. The public hearing will include a roundtable discussion on FASD and the criminal justice system. I understand that you are based in Melbourne, however it would be beneficial to have the Aboriginal Disability Justice Campaign as part of the roundtable and thus the Committee invites 2 representatives (particularly those who are Sydney-based) of the ADJC to appear at the hearing. There will be an opportunity for each group to provide a brief opening statement (3-4 minutes) before questions.

• Date: Friday 13 April 2012
• Time: 10.45–11.45 a.m
• Location: Macquarie Room, NSW Parliament House, 6 Macquarie Street, Sydney

The hearing will be recorded by Hansard so that Members can later refer to the transcript. Attached is a Hansard contact form, to ensure that names are recorded correctly. Could each person who will attend please fill in and return the form by email (reps [dot] spla [at] aph [dot] gov [dot] au) or fax (02 6277 4427) by Thursday 5 April 2012. Please contact the Secretariat if you wish to send more than 2 representatives.

Michael W. Miller Responds to New Study on In Utero Alcohol Exposure, Urges Caution in Reading Data

A New Study Shows That Alcohol Has Truly Damaging Effects on the Developing Fetus, and Suggests That Alcohol May Actually Prove More Detrimental Than Cocaine and Other Narcotics — But According to Scientist Michael W. Miller, This May Not Be Entirely Accurate

Arsonist guilty over deadly Black Saturday blaze

A former Victorian Country Fire Authority volunteer has been found guilty of killing 10 people by deliberately lighting a bushfire on Black Saturday. Sokaluk is autistic and has a mild intellectual disability. He told police he may have accidentally started the fire when he threw cigarette ash out of his car window

Killer suffers from fetal alcohol syndrome, jurors are told

By Dianna Hunt CLEBURNE — An expert on fetal alcohol syndrome told jurors Monday that convicted killer Mark Anthony Soliz has brain damage from fetal alcohol syndrome caused by his mother’s heavy drinking during pregnancy. Dr. Richard Adler, a Seattle…

Parents and Carers Support Group

The rffada now has a Facebook page for parents and carers and people who are living with FASD. It is a closed and moderated group and anyone interested in joining must be able to be non-judgemental and confidential about what happens in this group. The group can be found at rffada – parents and carers group. We also have the main group which provides general information on the condition and which is available to everyone including service providers and medical professionals. The general group can be found at Russell Family Fetal Alcohol Disorders Association. I trust that anyone wishing to find out more about FASD will be able to do so between this website and the FaceBook pages. Kind Regards Anne

Researchers take a closer look at Fetal Alcohol Syndrome

Examining children’s faces has long been used to help determine whether fetal alcohol syndrome is present. An unusually short eye opening, or “palpebral fissure,” for example, is one sign that the brain hasn’t developed properly.

See all stories on this topic

Should packaged alcohol display health warnings?

Sydney Morning Herald, Page 12, 10 March 2012

The Question A study shows that only 5 per cent of Australians are able to identify safe drinking levels. THEWINEMAKER STEPHEN STRACHAN WINEMAKERS understand why some people like the idea of health warnings on alcohol containers Even the work of leading anti-alcohol groups commissioned by Food Standards Australia and New Zealand found that they have no impact on drinking behaviour especially among the at-risk groups we most want to target Australia is trying to reduce business costs and red tape not increase them for no return.

Trans-Pacific Partnership Agreement Threatens Public Health

2 March 2012

An editorial to be published by the scientific journal Addiction has been made available online, revealing that negotiations are underway behind closed doors for a far-reaching new trade and investment agreement that could tie the hands of governments’ future alcohol and tobacco control policies in perpetuity.

New board to ‘name and shame’ alcohol ads

The Advertiser – Online

A NEW national health body has been established to “name and shame” irresponsible alcohol advertising.

Chaired by former Australian of the Year and children’s health advocate Fiona Stanley, the independent Alcohol Advertising Review Board

was launched in Perth today, promising to hold advertisers to account for what it says is a growing problem of alcohol abuse across the nation.

Drunk kids spark supply laws plea

The West Australian, Page 11, 17 March 2012

WA ambulance paramedics were called out to treat almost 200 drunken children nine of them under 12 in the last six months of last year McCusker Centre for Action on Alcohol and Youth director Mike Daube said the figures showed more under-12s treated than for the whole of the previous year when seven cases were reported

Honesty and alcohol

Australian Medicine Online — The national news publication of the Australian Medical Association
Headline News 19 March 2012

Alcohol affects every part of the body and causes many health problems.

These include poor nutrition, memory disorders, difficulty with balance and walking, liver disease, high blood pressure, muscle weakness, heart rhythm disturbances, anaemia, clotting disorders, decreased immunity to infections, gastrointestinal inflammation and irritation, acute and chronic problems with the pancreas, low blood sugar, high blood fat content, interference with reproductive fertility, increased risk of cancer of the liver and oesophagus, weakened bones, sleep disturbances, anxiety, and depression. And that’s just a start. Urgent reform is needed to address the estimated $36 billion in social and excess health costs that excessive alcohol consumption causes each year.

RFFADA REP: WHERE IS FASD? NOT INCLUDED IN THE HARMS AND NOT INCLUDED IN THE 36 BILLION DOLLARS

Well the good news is that we have reached and exceeded the 1000 supporters mark. In fact we have 1024. This is amazing and is a credit to those people who are coming forward because they realise how FASD and alcohol and pregnancy impact on the jobs they do.

Other news is that our colleagues in New Zealand will host their first ever conference on FASD at the end of the month in Wellington. For those of you with time and a shot of disposable income, this will be an excellent Conference. I know the people involved in organising this and this conference will be excellent.

Please don’t forget the following:

1. If you have any FASD projects that you want added to our list – please let me know
2. If you would like quality training on FASD contact me on 0412 550 540 or elizabeth [at] rffada [dot] org
3. If you are a parent or carer we would like to hear from you because I am specifically looking at what parents and carers need in the way of information and support outside of the health system

Thank you for your support
Kind Regards
Anne Russell

First ever New Zealand conference on alcohol damage to children
New Zealand will host its first ever conference on FASD on March 22nd in Wellington. Article, Voxy.co.nz, March 7, 2012a

Charge Reckless Mum: Doctor’s Union — The West Australian

Alcohol While Pregnant is Worse Than Cocaine or Pot
Pregnancy exposure to alcohol associated with lower academic scores

Fetal Cocaine Exposure May Not Affect Kids’ Academics: Study
A recent study has found that fetal exposure to cocaine, tobacco or marijuana does not affect the academic ability of children.

Article, U.S. News, March 7, 2012

Register now for NTI Upstream Webinar, Controversies in Diagnosis of Fetal Alcohol Spectrum Disorders: Implications for DSM-V
Join leading FASD expert, Dr. Ira Chasnoff on March 21st for the webinar, Controversies in Diagnosis of Fetal Alcohol Spectrum Disorders: Implications for DSM-V. Webinar, NTI Upstream, March 2012

Interview with Edward Riley, Ph.D. – FASD Expert

NOFAS President, Tom Donaldson and Vice President, Kathy Mitchell sit down with Dr. Edward Riley to discuss the latest FASD research in brain imaging techniques, animal models, and behavioral studies.  Dr. Riley is the Director of the Center for Behavioral Teratology at San Diego State University.

European Public Health Alliance
working towards better health for all

Welcome to the March 2012 Newsletter
Pregnant Kiwis’ drug, alcohol use causes concern
According to a new study, New Zealand mothers-to-be drink alcohol at a rate four times higher than women in the United States.
Article, 3 News-New Zealand, February 23, 2012

Body stayed silent on pregnancy warnings
Australia’s food standards group refused to release two reports on alcohol and pregnancy, including reports that stated people that see warning labels on alcoholic beverages are more likely to talk about the risks of alcohol use during pregnancy and a report that states warning labels on alcoholic beverage containers could potentially prevent up to 77 cases of FASD per year in Australia.
Article, The Australian, February 22, 2012

New calls on booze and babies
FASD Birth Mother, Elizabeth Russell of Australia talks about her experience with her two FASD affected sons and how she was advised by her physician to “have a few drinks” during her pregnancy.
Article, The Australian, February 25, 2012

If you have trouble with Centrelink please seek assistance from your local Welfare Rights agency, who specialise in providing advice and representation to people regarding Social Security Law.
www.welfarerights.org.au

The Parenting Matters! project is a research study funded by the Canadian Institutes of Health Research (CIHR). The study seeks to develop a better understanding about what it means to parent a child with a neurodevelopmental disorder (examples of a neurodevelopmental disorders are: Spina Bifida, Cerebral Palsy, Epilepsy, Fetal Alcohol Spectrum Disorders, Autism Spectrum Disorder, Down syndrome, cognitive disabilities and global developmental delay) and the day to day experiences of these families.

You can watch this webinar NOW on your computer. It was originally aired on Feb. 28, 2012

1. by extensive literature syntheses;
2. by a review of legal and policy frameworks that affect families of disabled children;
3. by analyzing population health data to explore parenting issues at a community level; and
4. through a mixed-methods study with families in four Canadian cities.

In the latter, we expect to engage 60 families in each city to complete a package of questionnaires developed with our National Research Advisory Group, and then to invite 10 mothers and fathers from each city to participate in face-to-face qualitative interviews to explore their experience of being a parent to a child or youth with a neurodevelopmental disorder (e.g., autism, global developmental delay, etc.).

Part 1 — Parenting Children with Neurodevelopmental Disabilities: What Do We Know, and What are the Opportunities? originally aired on February 28th, 2012 at 11:00 – 12:30 ET.

The main purpose of this webinar is to share what we have learned to date about parent health and well-being, and about parenting as reported in the NLSCY database. We will report on the progress of the study, and speculate about the potential utility of the findings for prevention and intervention studies to help parents on their parenting journey with children with neurodevelopmental disorders. We will also seek people’s advice about KT opportunities once the studies are done.

Radford (United Kingdom) teenager who battled major health problems nominated for Prince’s Trust award.

A teenager from Coventry who has battled major health problems before turning her life around is one of three people from the UK to be nominated for a Prince’s Trust award.

Antoinette Spelman, of Radford, was born three months prematurely and was given just a 50 per cent chance of survival after being diagnosed with foetal alcohol syndrome.

She survived but was left with major health and development issues and spent her childhood in and out of hospital.

A turbulent childhood meant she struggled at school but after joining a club run by The Prince’s Trust in Coventry, she has transformed her life.

She is currently studying for her A-levels and is learning to be a sign language interpreter at night school.

And on March 14, 16-year-old Antoinette will travel to London’s Leicester Square Odeon to attend The Prince’s Trust Celebrate Success Awards.

She has been nominated for the Educational Achiever of The Year Award which recognises young people who have overcome barriers, developed new skills and improved their education prospects.

She said: “I’m thrilled to shortlisted. The Prince’s Trust gave me the help, support and guidance when I needed it most and I can’t thank them enough for helping me get to where I am today.”

It is the eighth year the ceremony has been held with actors Tom Hardy and Joanne Lumley among the guests.

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.

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