Marty and Susie
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
‘It really is the little, little tiny children who are at risk here … And it could have been prevented.’
Susie is the foster mother of First Nations teenager Marty, who has fetal alcohol spectrum disorder (FASD).
Susie, who lives in a regional town, told the Royal Commission that she knew there was ‘something not quite right going on’ when Marty was around four.
‘I was really starting to ask for a diagnosis, but he got diagnosed with other things like autism and I just kept saying, “No, no, no, he really didn’t fit a diagnosis of autism.”’
Susie said for several years she asked the families department for a new diagnosis, which was only available in another state. ‘They weren’t keen on sending us off interstate.’
Marty was nine when Susie took him interstate and a doctor diagnosed FASD.
‘It shouldn’t have taken that long to get the diagnosis. … Had he been diagnosed at the young age of four or five, strategies could have got put into place to prevent those other [behaviours] from developing.’
Marty became increasingly aggressive and anxious. Susie said she still struggles to get support for Marty at school, where there is a ‘lack of understanding’ of FASD.
‘My foster boy, he’s gone to school for years now and there’s been no change. All my going in and driving them crazy and providing them information, telling them where to go to get the training … doesn’t seem to have made any impact in the education system.’
Susie told the Royal Commission that some First Nations organisations are downplaying the ‘huge impact’ of FASD because of the stigma attached to it.
‘FASD isn’t an Indigenous problem. It’s worldwide. If you want to read the figures, people in Ireland and over in Russia, it’s huge … There’s even a lot of mums in very affluent parts of Australia that say, “You can’t tell me I can’t drink”. You know, it’s an incredibly political subject.’
Susie said that in one remote community, a woman whose child was diagnosed with FASD was punished by the community.
‘Because of that, [one organisation] wanted to slow down the process of the diagnosing system … They weren’t giving out the actual figures of the [number of] diagnoses.’
‘Tampering with the statistics … isn’t going to help that little kid at the end of the day to get to a successful life,’ Susie said. ‘[The mother is] not going to get the support.’
Susie said FASD will remain an underdiagnosed cause of disability in Australia if ‘no-one wants to talk about it’.
‘I can advocate and support my boy as best I can for his generation now, but if nothing changes and we stick on this circle, [this] spinning wheel and never get off, then the next generation is [affected]. I hate to even think about it, because it’s just going to get worse.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.