Bartholomew and Delta
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.
‘In 20 years, nothing has changed. It's still just as hard to get a diagnosis. It's still just as hard to talk to a service provider who thinks they know everything about FASD and doesn't know anything except that it exists. It's still just as hard for children at school.’
Delta is in her 60s and lives with psychosocial disability. She is the mother of Bartholomew, who is his 30s and has ‘full’ fetal alcohol spectrum disorder (FASD).
‘[This] means he has the facial features,’ Delta told the Royal Commission. ‘They are quite obvious when you know what to look for, but they were missed until I identified it when he was 17.’
Bartholomew had a lot of behavioural issues growing up. Delta sought help ‘to try and find out what was wrong with him’.
‘We went to GPs, paediatricians, psychologists, psychiatrists … and of course mental health. But nobody picked it up. Not identifying it, not understanding it has caused our family so much stress.’
The ‘worst experience’ was with state disability services. A psychiatrist told Bartholomew ‘to take responsibility for his actions’ and not to come and see him ‘until he'd stopped smoking marijuana’.
‘[He felt] he'd been rejected and he refused to go to another medical professional for years, no matter how sick he was.’
The lesson, Delta said, is early intervention. Bartholomew’s diagnosis came ‘way too late for him’. In his 20s, he ‘was drinking and using drugs’ and ‘ended up going to prison’.
‘The secondary disabilities of FASD are inappropriate sexual behaviour, drug and alcohol issues, mental health issues, contact with the criminal justice system. So, he's pretty much had the typical trajectory of somebody with FASD who didn't have early intervention.’
Delta has been a community advocate for FASD for more than two decades, supporting ‘other people and other families’. She says ‘not one thing’ has improved in that time – FASD is more common than autism, yet there’s little knowledge of the condition. Doctors and the disability sector continue to ‘dismiss’ FASD.
Delta believes FASD should be aligned with autism for funding and support purposes – it ‘requires similar sorts of strategies and interventions’.
Delta says she pushed for Bartholomew’s rights ‘until the cows came home’.
‘The average person who doesn't have the experience I do may never get a diagnosis.’
Today Bartholomew is ‘better than he's ever been’. He’s got an NDIS package and a ‘psychosocial coach who understands FASD’.
‘That makes a big difference … they've established a rapport. And so I feel that if anything happened to us … hopefully he would advocate on [his] behalf to get whatever he needed.’
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.