Courtney Breen

Courtney Breen is a Research Fellow at NDARC and is currently involved in projects aimed at improving services for alcohol dependent women and families caring for children affected by Fetal Alcohol Spectrum Disorders (FASD). Her PhD thesis examined individual and community factors associated with alcohol consumption and harm in regional NSW as part of the Alcohol Action in Rural Communities (AARC) project.

A hidden disability

Dr Courtney Breen talks to parents and carers of people with Fetal Alcohol Spectrum Disorder. Share: Blog this! Digg this post Recommend on Facebook Share on google plus Share on Linkedin share via Reddit Tweet about it Print for later Bookmark in Browser Tell a friend Related posts: Misdiagnosis Reflecting on the International Conference on […]

‘We have to prevent it, absolutely 100 per cent we have to prevent it but we also have to accept that it happens and it’s happened and there should be no shame and blame for anybody. What needs to happen is that those people who have acquired it need to get the best support and assistance that they can.’ Carer of child living with Fetal Alcohol Sprectrum Disorders (FASD)

FASD is the most common, preventable cause of disabilities and brain damage in children and is caused by exposure to alcohol during pregnancy. In an attempt to find out how services could be improved for children with FASD, Dr Lucinda Burns and Dr Courtney Breen from the National Drug and Alcohol Research Centre recently conducted an Australian first study which involved interviewing parents and carers on the frontlines.

Dr Courtney Breen discusses her experience conducting the interviews.

Talking to parents and carers of individuals living with FASD was a privilege. The carers were very willing to provide information about their situation and it was clear that they wanted to promote a greater awareness about FASD to improve things for the children in their care but also to assist families experiencing similar issues. Although the level of disability is substantial, FASD is not well known in the general community and increasing awareness of FASD was a priority for carers.

The study highlighted the lack of knowledge about FASD among health practitioners, in the education system and criminal justice system. Many of the carers were clearly frustrated at the lack of awareness regarding FASD. They often had to educate the very people that they were going to for assistance and also reported the lack of ability or unwillingness among some professionals to recognise and diagnose FASD.

The majority of the sample had a diagnosis of FASD with almost half diagnosed with Fetal Alcohol Syndrome (FAS) – the most visible diagnosis in the spectrum. The children had numerous other diagnosis, most commonly ADHD, learning disorders, anxiety disorders and autism. Many of the children came into care with severe medical problems.

Although carers reported their children’s health was currently good or very good it was obvious this was due to the fact that the carers had nurtured them through substantial health problems, accessing numerous services and trialling different strategies to deal with problems they encountered.

Carers described FASD as an ‘invisible’ or ‘silent’ disability with little recognition of the burden associated with the disorders. Even when there is some effort put into identifying disability, the families caring for children are often forgotten; the ongoing nature of caring is not adequately recognised and carers reported feeling isolated and stigmatised.

Some of the carers had children with other disabilities and they noted the differences regarding funding and support for individuals with FASD. Carers felt they were judged and labelled as bad parents by services that expected them to try harder, believing the issues with the child were a result of poor parenting rather than the child having FASD. The carers were incredibly dedicated and it was clear they wanted the best for the individual(s) in their care. There are probably instances where parents could be given ideas on better ways of managing certain situations but as one carer reported ‘the last thing we need is mainstream parenting training’.

The challenges of caring can be reduced by adequately supporting the individual affected by FASD; by recognising FASD as a disability, increasing the awareness of FASD, educating and training professionals to have expertise in FASD, providing funding to assist individuals and evaluating interventions for individuals affected by FASD. Carers need to be adequately supported and the challenges of caring should be acknowledged and carers should be provided with adequate information on FASD and opportunities to connect with people in similar situations.

FASD is caused by alcohol exposure – not by bad parenting practices. We need to work at preventing alcohol exposure during pregnancy but we should listen to the carers of individuals affected by FASD and support them.

For more information about FASD, or to find out what you can do to help prevent FASD in Australia, visit www.fare.org.au

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13 Responses to “A hidden disability” Subscribe

  1. Jan Hammill January 24, 2013 at 9:48 am #

    Well done Courtney. This morning two things come to mind about how firstly, professionals are not getting the message, and secondly, what needs to happen in order to reach the heaviest drinkers in some populations.

    1. “Developmental origins of health and adult disease: What should neonatologist/paediatricians be considering about the long-term health of their patients” by Professor Alsion Kent in J Paediatrics & Child Health, Vol 48, No 9, Sept 2012, p730-735.
    Four case histories are given on premature neonates for which only one case includes maternal history, that is, the mother was obese. In researching DOHaD I would have thought it as equally important to mention FASD.

    2. Over dinner last night I was discussing FASD with an Aboriginal man who expressed serious concerns about the obvious cases of FASD in his community where there has been extension education about alcohol use during pregnancy over more than 15 years. He said the problem is that people still don’t get “fetal alcohol”. It needs to be simplified to “brain damage to your children” and “it’s not fair that you do this to your kids”. “You can have good kids if you don’t drink.” would be a better message. He also gave other comments which made me realise we do need to work harder by adapting our language to suit individual sites. We can do this without stigmatising mothers.

    Overall, we NOW need daily TV advertisements to bring the message home. Is there some way that we can raise money to do this as the matter is urgent? We need a champion for babies.

    • Jan Hammill January 24, 2013 at 9:51 am #

      Two corrections please –
      1. Professor Alison L Kent
      2. Not the “heaviest drinkers” but “all drinkers”
      Thanks

  2. Vicki January 22, 2013 at 3:49 pm #

    On behalf of Australian parents and carers of children living with FASD, NOFASARD congratulates FARE, Courtney Breen and Lucy Burns of the National Drug and Alcohol Research Centre, University of New South Wales for presenting parent/carer experiences and opinions which are too often overlooked, even ignored. We were honoured to participate as co-investigators for this project. In their encounters with service providers, educators and health professionals, parents and carers are often both educator and advocate and this report delivers a new dimension to the complexity of the problem of FASD and its acceptance in Australia.

  3. Mike January 18, 2013 at 7:21 am #

    Please can we have the spelling the Australian English way not American English. It’s foetal NOT fetal.

    • Sarah January 18, 2013 at 9:09 am #
      Sarah Ward

      FARE and others in the field in Australia now use ‘fetal’ or ‘fetus’ which is the standard speling throughout the world in medical journals.

      The recent House of Representatives Inquiry into FASD also uses this terminology and noted in their report that this useage is the accepted medical spelling.

    • Sue Miers January 18, 2013 at 5:51 pm #

      In addition to Sarah’s reply it is also interesting to note that according to the Oxford dictionary “foetus” has no etymological basis and is a mis spelling of the Latin word “fetus” that began to appear in British English sometime in the 16th century.The Latin – fetus – meaning ‘pregnancy, childbirth, offspring’

  4. Alison January 17, 2013 at 1:47 pm #

    My heart goes out to these parents and carers who must feel so alone in their struggle to care for their children. The Government must surely understand the need to act to help these carers and children and prevent more people being born with FASD.

  5. Anne Russell January 17, 2013 at 11:58 am #

    Hi Courtney. I work in this field also particularly in the support of birth mothers and foster and adoptive parents. I have many people for whom im advocating but very few practical referral options for them. Do you have the contact details of community or social service providers who understand FASD? I have heard about situations where some providers and medical professionals say they understand FASD but thats clearly not the case when the parents attend their appointments. This not only is frustrating for the parents but absolutely devastating for the future willingness of the child to attend these appointments.

    If you have contact details for providers who understand FASD and can assist in a practical way i would appreciate them.

    Thanks Courtney
    Anne Russell
    rffada

    • Courtney January 22, 2013 at 4:33 pm #

      Hi Anne

      It is my understanding that NOFASARD (http://www.nofasard.org.au/) has collated a list of helpful professionals that they are willing to share with parents and carers.

      Kind regards,
      Courtney

  6. Katherine January 16, 2013 at 9:45 am #

    Courtney, I heard you speak at the APSAD Conference, and the words of the carers and parents are so powerful in highlighting their struggles.

    • Paul January 17, 2013 at 9:50 am #

      I heard your APSAD presentation too. Great to see the message reaching a wider audience.

  7. Michael January 15, 2013 at 10:30 pm #

    This is terrific work Courtney that as a society we should be grateful. Solutions to the challenges faced by these families will not be serious sought after until the veil over this disability has been lifted and the extent of the harm fully revealed. Great stuff and keep it up.

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