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Interview with Sonia Berton, rffada President

What more can Australia do to combat FASD?

  1. Acknowledge that FASD exits and to levels uncertain in Australia due to an historical reluctance to openly speak about or deal with FASD – for reasons not researched or fully established. There are plenty of theories and anecdotal stories in relation to our strong desire to ignore FASD in Australia – from the costs to service provision through to an outdated view in the alcohol and other drug sector including researchers and policy development personnel.
  2. Introduce a raft of prevention, early intervention, education and awareness raising, assessment and support services across Australia in consultation/partnership with the many established services that operation internationally (to prevent us re-inventing the wheel).

What are some of the main misconceptions surrounding FASD? What other problems do these sorts of misconceptions bring to the table?

  • That FASD does not exist.
  • That only the aboriginal population (or the bulk thereof) are affected by FASD.
  • That only by drinking high volumes of alcohol is there a high risk or direct link to FASD.
  • That the lack of research or scientific evidence that substantiate low level alcohol consumption and a link to FASD means no or low risk.
  • That by raising the awareness of FASD we will shame women and children with FASD and in aboriginal population.
  • That by raising the awareness of FASD there will be a substantial increase in terminations, particularly women who have consumed alcohol prior to discovering that there were pregnant.
  • That ‘my mother’, ‘my best friend’, ‘I’, ‘my sister’ etc drank alcohol before finding out they were pregnant/during pregnancy and are ‘fine’ so FASD does not exist/is over reported/exaggerated etc.
  • That we need more research/parliamentary enquiries/steering committees/projects before Australia can begin to plan on how to work through FASD and subsequent issues.
  • That by remaining silent and/or quietly dealing with FASD it will go away/the stigma will be non existent/those affected are best supported.
  • That FASD is widely reported internationally compared to Australia because their research and findings are incorrect/biased to FASD as opposed to other disabilities.
  • That if we find/report that FASD is often incorrectly diagnosed as other forms of disabilities such as ADS or Autism, all people with these disabilities will be at risk of increase stigma and shame.
  • That women are not strong enough to cope with the diagnoses of FASD.

A short list of the misconceptions that keeps Australia stuck where it is today. That is, no federally coordinated approach on FASD that incorporates – prevention, early intervention, awareness raising, education, assessment and support services.

What long term problems arise due to FASD?

A long and established lists of disabilities, quite often under reported or misdiagnosed. Not adequately or appropriately supported as a result.

Increased shame and stigma rather than a reduction (sadly).

How important is diagnosis for an improved prognosis?

Critical if we are to support the person to reach their full potential. It’s a like treating and supporting someone with a mental illness as if they had a hearing and vision impairment. Regardless of the intention (reduced stigma in hearing and vision impairment compared to mental illness, easier diagnosis for the person to accept etc. ) – it is ineffective and many would suggest unethical and inhumane.

FASD should also be classified as a disability in Australia with eligible funding applicable including the pending National Disability Insurance Scheme.

What are your comments on the lack of prevalence data of FASD in Australia?

It is hard to fathom why such a consertive effort has been made on behalf of the alcohol and other drug sector in Australia and state and federal governments to avoid the area of FASD including our capacity to capture and report on the data.

Do you think there are unfair prejudices placed on Aboriginal populations regarding drinking and FASD? What are, if any, the differences in attitudes toward drinking while pregnant between Aboriginal populations and white populations?

Australia is the only country that I am aware of where the consumption of alcohol during pregnancy has apparently nil effect, with the exception of the aboriginal population. I doubt the white population has a special gene in this regard. Our attention in the area of FASD predominately limited to the aboriginal community has been undertaken in absence and avoidance of FASD in white populations.

How beneficial will more overt label warnings be for the health of the fetus?

It would be the tip of the iceberg for what is now required in Australia in relation to FASD. Sadly, it has been so badly and overwhelmingly neglected we have much to do to catch up to the international sector. We are decades behind in our work.

I can provide you with a couple of examples of just how archaic our approach to FASD is in Australia. I am sure carers and people with this disability would be able to provide you with many more.

1/ During an FASD media awareness raising campaign in late 2007  we arranged for carers and people with FASD to meet in Sydney and provide TV, Radio and Print interviews. Early that morning half a dozen people with FASD and their carers met in the lobby of a hotel for the first time. It was also the first time that these young adults with FASD had met others with the same disability. I could not imagine any person with any disability in the 21st Century in Australia meeting someone for the first time with a similar disability.

2/ During preparations for a conference on FASD in 2007, I was contacted by a representative of a state govt agency who advised that she was aware that at this conference people with FASD would be acknowledging their disability and presenting on the topic. She suggested that if this went ahead the sponsorship would be pulled from the conference. Can you imagine this threat against a conference or people with intellectual disability? Physical impairments? People from CALD backgrounds? Yet for FASD this blatant discrimination was perfectly legitimate in the eyes of this senior bureaucrat. The conference failed to go ahead when a co-agency at the time suddenly and for no explainable reason pulled out. They were funded by this particular state govt body.

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