A 14-year-old girl with memory problems and below-average intellectual functioning – exacerbated by family violence and sexual abuse – has not been into the fresh air for several days.
At various points throughout the past fortnight she has only been allowed cold showers and has gone without meals – punishment for behaviours like aggression and yelling that she cannot remember engaging in.
She has foetal alcohol spectrum disorder, or FASD, a group of conditions characterised by central nervous system dysfunction and which cause severe cognitive impairment, along with developmental, sensory, learning and behavioural difficulties.
This is not an uncommon example of the experience of a child with FASD or other intellectual disabilities who are incarcerated in youth detention centres, according to Prof Carmela Pestell, a clinical neuropsychologist and the FASD course coordinator at the University of Western Australia.
“They genuinely don’t understand why they’re in prison to begin with, or why they’re being punished when they do the wrong thing,” she says.
So what causes this condition, why do so many children with it end up in the justice system, and can it be treated? Guardian Australia speaks to FASD experts from around Australia to find out.
What causes FASD?
FASD is caused by exposure to alcohol in the womb.
The director of the University of Sydney’s Australian Paediatric Surveillance Unit, Prof Elizabeth Elliott, says there is no known safe level of alcohol that can be consumed during pregnancy.
Because alcohol crosses the placenta, maternal and foetal blood alcohol concentrations can rapidly reach the same level but the foetus’s organs are not developed enough to break the alcohol down and remove it. This disrupts brain and other organ development.
Why do children with FASD often end up in trouble?
“FASD means the child has a prenatal brain injury, similar to a baby having a stroke after birth,” Elliott says.
“As the child develops, their cognitive skills are well below their chronological age. They might not be able to differentiate right from wrong. They are often very impulsive, and don’t learn from their mistakes.”
Without early diagnosis, support and intervention, she says, these children are easily manipulated and led by older kids, and “they get into trouble”.
“They can’t perform to their potential academically. They get expelled from school. They lose all of their self-esteem.”
Pestell says jail can be a confusing place for children with FASD. “They genuinely don’t understand why they’re in prison to begin with, or why they’re being punished when they do the wrong thing,” she says.
“There’s a disconnect in the brain, and so they may have forgotten their offending behaviour, or they forget their bail conditions like their curfew, so they commit crimes in breach of those conditions.”
It can be a terrifying environment for a child who may have experienced abuse, neglect and food scarcity their entire life.
The child’s reaction to incarceration – including constant rule breaches and socially unacceptable behaviour – means there is a greater chance compared with the non-disabled population that, once a child with FASD enters the youth justice system, they will remain there indefinitely.
How prevalent is FASD?
Worldwide, rates of FASD in the general population are estimated at 1% to 5% but there is a lack of data for the general Australian population. This is because there are so many challenges to diagnosing FASD, according to Pestell.
“FASD is often undiagnosed because there’s a lack of awareness from clinicians about diagnosing the condition, or clinicians feel uncomfortable addressing someone who is pregnant about their alcohol use because they don’t want to embarrass or shame mothers,” she says.
A groundbreaking paper published in 2018 by the Telethon Kids Institute assessed 99 young people aged between 10 and 17 assessed in a WA detention centre and found nearly all of them had severe brain impairments, including 36% who were diagnosed with FASD. Of those with FASD, 96% identified as Aboriginal. This is among the highest known prevalence of FASD in a custodial setting worldwide.
Can FASD be treated?
Yes. Elliott and Pestell emphasise that a trajectory of behavioural issues leading to youth justice is not inevitable.
“There are interventions that definitely work,” Elliott says. “The brain is very malleable in young children and it can adapt and respond to treatment.
“So, if a child has a speech problem, regardless of whether it’s due to alcohol or due to a brain injury postnatally, they will respond to speech therapy and training. They will respond to intensive educational support. They will respond to behavioural strategies and modification, so they can fulfil their potential.”
The limitations and the strengths of each child with FASD must be comprehensively assessed and understood to determine the best interventions, she says.
“And we then treat the child with compassion, modifying their environment to make it easier for them to perform.”
Dr Robyn Williams, a senior research fellow and FASD expert at Curtin University medical school, says she has many stories of youth receiving early treatment for FASD who never encounter the justice system, and who find employment and independence as adults.
“There are many good stories of children with FASD, and two I saw in my own family,” Williams says. “Because adult nieces and nephews helped to parent and support the child and knew how to advocate for those children, and that’s the village approach we need.”
Why isn’t prison an appropriate place for children with FASD?
A punitive environment exacerbates their condition and triggers trauma and associated responses like violence, which can escalate to rioting, especially when the child cannot remember why they are detained.
The reaction from some to this violence, including the former Western Australia premier Mark McGowan, has been to label FASD as “just an excuse” for youth crime. Others demand young people be treated similarly to adults, saying the response to youth crime by the justice system is too “soft”.
“I can understand why people and the community are generally very angry about particularly the more serious kind of offending which is often very destructive to families and has wide-reaching consequences,” Pestell says.
“But I also think it’s beyond the understanding of most community members to get a sense of what some of these kids have been through.”
Elliott agrees: “Comments like [the premier’s] show no understanding of the impact of a brain injury, and there is certainly a lack of empathy for these children.
“There’s been layers of trauma on top of FASD. They might have been born into a household of domestic violence, and drug and alcohol use.
“They might have been moved from their parents at a young age, or they might have had significant abuse and neglect before they went into foster care, then they move from one foster care placement to another.”
On top of the trauma, they may have severe developmental challenges. Elliott’s work has found one in five kids with FASD has microcephaly, with a brain size that is two standard deviations below what would be expected for their age and gender.
“That’s how severe the impairment can be,” she says.
What support is available for FASD?
Williams says it is extremely difficult to access support for a child with FASD.
The Noongar woman from WA runs training in Indigenous communities about FASD, and has researched how families caring for Aboriginal children with FASD understand the condition and access care.
Clinicians often have outdated understandings of what the symptoms of FASD are, she says, prompting her to develop a series of factsheets on how to recognise and diagnose it.
Common misconceptions about FASD are prevalent among GPs and child protection and youth justice workers, she says, further delaying diagnosis and care. A myth also persists that “FASD is only an Aboriginal problem”.
“This is not an Aboriginal problem and the majority of Aboriginal people don’t even drink,” she says. But about 60% of all pregnant women in Australia drink, with about half stopping once they realise they are pregnant.
Aboriginal people who do drink are more likely to drink at risky levels. This means that the prevalence of FASD among Aboriginal and Torres Strait Islander people is disproportionately higher than the non-Indigenous population, says Pat Turner, the chief executive of the National Aboriginal Community Controlled Health Organisation.
“This is a direct consequence of colonisation, racism and poor social health determinants,” she says. “It is essential approaches to prevent and support people living with FASD are culturally safe, trauma-aware and led by the Aboriginal and Torres Strait Islander community.”
Williams agrees: “We Aboriginal communities have a different worldview around disability, and so we don’t attach the same kind of stigma to it.
“That is one of the real strengths of Aboriginal people. And we embrace the village to support each other and this can be a protective factor for children for FASD. So if you’re not going to be raised by your biological parents, it is important you are placed with a kinship carer and you don’t go through multiple placements with strangers.”
Does childhood trauma worsen symptoms?
Yes, trauma and disruption can make FASD symptoms worse. Childhood stability, a loving and supportive environment, and early diagnosis are crucial for those with FASD to reach their potential.
Williams refers to one study which found 43% of youth with FASD had moved homes in the past year compared with 22% of their peers in care without FASD. Kinship carers often have their own chronic health conditions and may be raising more than one child with FASD, making support for carers critical, she says.
A paper authored by Williams describes how girls and women with FASD often have babies younger, with one study finding six out of 10 had experienced teenage pregnancy while in kinship or foster care.
Williams recalls receiving a call about an 18-year-old Indigenous teenager, barely able to read or write and who had been in out-of-home care for at least six years across multiple placements. She was in custody after being charged with armed robbery.
She was also eight months pregnant and still using alcohol until she was detained.
“She had never been assessed for FASD,” Williams says. “We found not only she had FASD but all seven of her siblings had it as well.”
It is estimated that 51% of children with FASD have a sibling with the same condition, which Williams says shows opportunities for prevention within families have been missed.
Education about drinking and prevention needs to target communities, she says, along with the child protection and foster and kinship care sectors.
What should change to help kids with FASD?
Most crucial to preventing children with FASD ending up embedded in the justice system, Williams, Pestell and Elliott agree, is early screening, and alcohol and drinking education.
There is no point having “even the best intervention services”, Elliott says, if the children who need them are not being identified. “It’s like a building without a ramp, but expecting those who use a wheelchair to access it,” she says.
“Any child who is taken into foster care needs to have an adequate assessment, and that includes an assessment of what they were exposed to prenatally. Children should also all be screened on their first contact with the youth justice system.”
She believes the alcohol industry needs to be held to account by the government through stronger alcohol taxation and pricing, and restriction of liquor store opening hours and locations.
“For kids who get involved in our youth justice system, they are some of the most vulnerable members of our society and of our community,” Elliott says.
“And while I don’t diminish any of the experiences of potential victims, I do think if we want healing overall, then we need adequate support in place for these young people and for their communities, because their outcomes, if we do that, will benefit everyone.”
