Senate inquiry into Foetal Alcohol Spectrum Disorder hoped to instigate change

She would like to see specialist FASD clinics in every city and region.

Anne Russell is a recovered alcoholic who started the Russell Family Fetal Alcohol Disorders Association in 2007 after raising two sons with FASD.

Babies are born with FASD after being exposed to alcohol in the womb that results in brain damage and mild to severe neurodevelopmental impairments affecting memory, language, learning and behaviour.

Ms Russell welcomed the latest senate inquiry looking for effective prevention and diagnosis strategies for FASD, launched in September this year, but questioned why the issue had not become a major national focus.

"The government understands the depth and breadth of the condition but isn't ready to acknowledge it, otherwise it would be doing much more to prevent it. Currently there is no national prevention," she said.

"FASD - The Hidden Harms report from 2012 made some very good recommendations but I don't think one has been acted upon. So, we are having another inquiry seven years later.

"It's good that this is happening because FASD is in the spotlight but how many children were unnecessarily born with FASD in those seven years?"

Ms Russell said she was astounded that a preventable disability, that is an acquired brain injury, was not being prevented.

Using prevalence research from the US, Ms Russell estimated up to 10 per cent of the Australian population could have FASD, which is significantly higher than national autism rates.

She said FASD intersects with other social issues such as mental health, drug and alcohol abuse, domestic violence and youth justice.

"Early intervention is critical. Both speech and occupational therapy are very beneficial...they can still learn how to manage certain aspects of their lives," Ms Russell said.

"It is pie in the sky but we need FASD clinics in each capital city or region, where a parent can see doctors or psychologists to learn about diagnosis and post-diagnosis interventions. A place where parents can talk about managing the various issues relating to the child rather than just waiting for them to become criminals, or even to die," she said.

"The average life expectancy of a person with FASD is 34, where they die from [mental illness], drug or alcohol overdose, other accidents and injury."

Ms Russell said her eldest son has mild facial FASD features but lives a normal life and her youngest son has no physical FASD features but was more affected.

She took them overseas to receive their diagnoses and received no support in Australia to help manage their conditions.

"My youngest still has a normal-to-high IQ, he is clever, but simple things like putting his car in to be serviced, which you or I could manage easily, he finds terribly difficult," she said.

"One of the hardest times for parents and children is the teenage years. This is the time when they are usually going to get into trouble with the police, and my youngest fell into the criminal justice system.

"This system does not understand FASD, where those with FASD need support to get to their court hearings on time, or to abide by parole instructions. The system can't just assume that because they talk well, that they have the capacity to do the things that are asked of them."

Ms Russell said from her experience gaps in understanding and knowledge about FASD existed in all sectors, including justice, child protection, and the education and health systems.

"Any Mum just wants what is best for their child. She doesn't want her child misdiagnosed with autism just to make her feel better, she wants to know how to help her child, and this is something that doctors are still not that good at."

Submissions are open for the new senate inquiry which will report in 2020.