Misdiagnosis

On 19-20 November 2013, the Public Health Association of Australia (PHAA) and the Foundation for Alcohol Research and Education (FARE) will host the Australasian Fetal Alcohol Spectrum Disorders Conference. The aim is to share knowledge about FASD, bringing people together to exchange ideas, practice, research and policy discourse. Drink Tank showcases some of those people and their stories.

Every week Russell Family Fetal Alcohol Disorders Association (RFFADA) volunteers speak to many parents and carers of children and adults with Fetal Alcohol Syndrome Disorder (FASD).  All parents are struggling with similar issues: where to get a diagnosis; what strategies to use to help their children; how to keep adult children out of prison and reduce their potential for suicide – and how to help friends, family and services understand what having FASD really means.

Many foster carers have a terrible time with the list of diagnoses, typically, not one of which is FASD even though there is confirmed maternal alcohol consumption. As one RFFADA client said:

 ‘Doctors think he has post-traumatic stress disorder and attachment disorder but say that they don’t think it is fetal alcohol. I feel something else is wrong. He has failed at school and in the interventions and programs set up to help him because I have observed that he gets overwhelmed easily and just gives up. Doctors say he is simply defiant and he needs to take responsibility for his actions. He keeps punching holes in the walls and they blame my parenting for his behaviour…’

This comment is repeated over and over again by parents and carers who struggle for support and are blamed for poor parenting.  While services are definitely improving, they still don’t understand that FASD is very different from other conditions which allow the individual to think properly and make appropriate choices.

The wrong strategies, interventions and accommodations will make life more difficult for the parents and exacerbate secondary disabilities for the individual.

A diagnosis of FASD or prenatal alcohol exposure should be a red flag to anyone dealing with suicidal people or people with mental health and/or drug and alcohol problems and training should be mandatory for staff in services which are likely to manage them.

For over 13 years, the RFFADA and its volunteers have worked solidly with the government, service providers, parents and carers and other organisations to talk to Australians about the dangers of alcohol and pregnancy.  I believe our canvassing has forged many changes over the years, but the greatest stimulus for change will be the FASD Conference to be held in Brisbane in November.

We hope that this conference will be the catalyst for the change in grassroots support and understanding for parents and carers. We have had so much research undertaken around Australia, but still nothing has changed for this group. We are still being told that FASD is an excuse for bad behaviour and are still being blamed for our parenting.

Russell Family Fetal Alcohol Disorders Association

Public Health Association of Australia