A hidden disability

‘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