Foetal Alcohol Spectrum Disorder – an invisible generation of sufferers video

Anita Gibbs with her two adoptive sons, Ruslan and Dima, who both have Foetal Alcohol Spectrum Disorder.
CLIVE COPEMAN

Anita Gibbs with her two adoptive sons, Ruslan and Dima, who both have Foetal Alcohol Spectrum Disorder.

A teenage boy burgles a house, gets caught and is sent straight to bootcamp.

The young man is whipped into shape by a daily diet of early-morning starts and army drills. 

He learns about authority, self esteem and team building. When he gets out, his report positively glows.

READ MORE:
Raising a child with FASD is a life sentence: mum
Alcohol harms unborn babies, health experts warn
* Waikato DHB proposes to take action on fetal alcohol disorder
Greater recognition of FASD within the court system
Awareness call for alcohol's child victims
Mothers' guilt - the harm of drinking while pregnant


 For police, the judge, and social workers it's case closed and a job well done.

But a couple of days after he is released from bootcamp, the kid burgles again.

Former inmate Teina Pora has Foetal Alcohol Spectrum Disorder, which contributed to a false account he gave during ...
LAWRENCE SMITH/FAIRFAX NZ

Former inmate Teina Pora has Foetal Alcohol Spectrum Disorder, which contributed to a false account he gave during police interviews about the unsolved crime - implicating himself even though he was innocent.

It is a real-life story, and an alarmingly familiar one.

But the teen just happened to front up to a Youth Court Judge, who had recently returned from Canada where he had learnt about the prevalence of neuro disabilities​ among youth offenders. So the judge had a hunch.

Far from seeing a "bad egg", he saw a deeper problem, and he asked a specialist to assess the teen.

The boy had Foetal Alcohol Spectrum Disorder (FASD). His brain development had been affected in-utero when his mother drank alcohol during her pregnancy.

The disorder affected his behaviour. He understood routine and discipline – and right from wrong – but risk, consequences, and empathy? 

Through no fault of his own, and despite the best efforts of those trying to rehabilitate him, he had not learnt the lessons being drilled into him.  

But with a diagnosis, specialists were able to understand what drove him to fall in with a crowd of petty criminals, and make a different plan for him: every hour of his day became part of a routine.

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Teina Pora police interview.

So far as former Youth Court principal Judge and now Children's Commissioner Andrew Becroft knows of the case, the kid has never been to court again.

That was not how life went for Teina Pora.

THE WORST-CASE SCENARIO

Former Private investigator Tim McKinnel helped Teina Pora in his fight for his conviction to be overturned, which ...
LAWRENCE SMITH/FAIRFAX NZ

Former Private investigator Tim McKinnel helped Teina Pora in his fight for his conviction to be overturned, which succeeded at the Privy Council in 2015.

Pora was 17 when he was arrested, and later convicted of the 1992 rape and murder of Susan Burdett.

He had been told there was a reward for information on the crime.

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It would be many years before Pora's FASD was diagnosed.

The disorder made him suggestible, eager to please people in authority – he was 17, but had the mental capacity of an 8 to 10-year-old – and so over days of police interviews, he gave a false account of Burdett's murder.

Principal Youth Court Judge John Walker is concerned at the potentially invisible rates of young offenders getting into ...
FAIRFAX NZ

Principal Youth Court Judge John Walker is concerned at the potentially invisible rates of young offenders getting into trouble with the law.

A team including then-private investigator Tim McKinnel worked for years to free Pora before his conviction was quashed in 2015 by the Privy Council, finally ending his 21 years as an innocent man in prison.

Another man, Malcolm Rewa, was found guilty of Burdett's rape – but was never convicted of her murder.

McKinnel says there remains a vast lack of knowledge throughout the justice system. Pora's condition was finally diagnosed by pioneering FASD expert, neuropsychologist Valerie McGinn in 2014.

It is important to identify disorders like FASD if there is a hope of stopping prisoners reoffending – and also to prevent innocent people from falling victim to a justice system they struggle to comprehend, McKinnel says.

"I think there is a genuine risk there are plenty of people like Teina in our prison system."
 

Doctoral research student at the Otago University law school, Kesia Sherwood, is researching whether there needs to be ...
KEVIN STENT/FAIRFAX NZ

Doctoral research student at the Otago University law school, Kesia Sherwood, is researching whether there needs to be special law or policy drafted to help youth offenders with Foetal Alcohol Spectrum Disorder.

Social awareness of the dangers of drinking during pregnancy has been building since the 1990s. 

The experts say there is no "safe" amount an expectant mother can drink. 

Yet according to the Ministry of Health's figures, at least two in five Kiwi pregnancies are unplanned, and half are exposed to alcohol - with one in 10 exposed to high levels of drinking.

New Zealand's FASD working group estimates as many as 1 in 100 children suffer from FASD, although the exact prevalence of the condition is unknown.

In the United States, a 2015 study explored who drank during pregnancy – finding it was most common among women with a tertiary degree. 

The phenomenon was thought to be linked to higher discretionary income, and the likelihood of a binge-drinking culture established during their university years.

Despite earlier stereotypes, studies now suggest only around 4 per cent of people living with FASD have the hallmark facial features that tend to be the first clue  – meaning generations past are likely to have gone under-diagnosed.

Associate Health Minister Peter Dunne's Taking Action on Foetal Alcohol Spectrum Disorder Action plan, launched last year, estimates currently half of all of children in Child, Youth and Family (CYF) care have FASD. 

Research for the plan found the current services for screening pregnant women for alcohol is inconsistent, and the country's health workforce's ability to detect the disorder underdeveloped - with most New Zealand clinicians currently lacking the training to diagnose it.

The plan is aimed at ramping up a nationwide ability to assess and diagnose - and educating teachers to notice the warning signs too - by 2019.

It is also heavily focused on prevention - making sure mothers are educated on the dangers of drinking during pregnancy.

Otago University law school PhD researcher Kesia Sherwood wants authorities to go even further. 

She is currently appealing for any families with children who have FASD and have had interaction with the justice system to speak with her for her study .

Sherwood became interested in early-childhood trauma when she was a student volunteering as a child advocate at a CYF secure unit in Dunedin.

"These kids came across as incredibly difficult and defiant – but actually often there would be a physiological cause for that behaviour that was often missed."

Her study will explore whether young offenders with FASD slip between the cracks in the justice system.

A 2011 United Kingdom study, not yet repeated here, cast a spotlight on the disproportionate rates of young people with FASD getting into trouble – one in 10 youths in custody there suffered from FASD – compared to around 1 in 100 in the general population.

Sherwood, whose first baby is due soon, hopes she will be able to finish her research by 2019.
The ideal result: research that will  help her draft policy that could give the justice system a mandate to check for FASD, then deal with young offenders accordingly - with ideas from special training for police, to legislation for the courts.

She is particularly interested in the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003, which provides an alternative pathway where, much like for severely mentally ill offenders, people with intellectual disabilities can get a route to treatment and secure care, instead of a jail sentence .

However, that law defines an intellectual disabled person as someone with an IQ of 70 or lower. The problem is, FASD rarely results in intellect that low - but it does affect how someone behaves, what they can understand, and their chances of rehabilitation, explains Sherwood.

"At the moment, for an individual with FASD, who can't make that connection between behaviour and consequence, unfortunately this means that, firstly, they are over-represented in the justice system.. [and] secondly they are going to make up a large proportion of our recidivist offenders. 

"So they cycle through the justice system again, and again, and again. And at the moment without sufficient support networks for these young people - and for our adult offenders as well - there's just nothing that's going to break that cycle - because of the way their brain works, and because of the way our justice system is not equipped to support their specific needs."

TROUBLED KIDS

The average New Zealand youth offender is about 15. 

What concerns Principal Youth Court Judge John Walker, is that if FASD has not already been diagnosed in childhood, these teens have two years left for an intervention via the justice system before it treats them as adults, and the prospect of jail looms.

What's more, the Youth Court only sees about 20 per cent of young offenders – the ones committing the worst crimes, usually aggravated robbery or serious assaults. The rest, like the teen shoplifters, tend to be dealt with in alternative justice and police youth aid.

What if, Walker wonders, among that 80 per cent who never get to court, are more people with FASD who are never diagnosed, and get into worse trouble when they are adults?

Walker gets the impression many Kiwis think youth offenders are just bad teens who need hard punishment.

"It's much more complex than that. If it was as simple as that there would be much more opportunity to deal with it. 

What we are dealing with is these neurological complications... sometimes exacerbated by other damage, as well as alcohol or other drug abuse on top of that.

"Often on top of all that is a very dysfunctional upbringing sometimes characterised by sexual and physical abuse. Often more than one of these contribute to offending."

The Youth Court's judges began taking an interest in whether neurodisabilities could explain the children winding up in courtrooms from around the early 2000s.

Measures already available to the youth courts include forensic nurses. And to all courts: judges able to request psychiatric reports, as well as communication assistants to help defendants understand court hearings, and legislation that allows judges to ask experts to assess whether a defendant's mental impairment means they are unfit to stand trial.

"We know that Foetal Alcohol Spectrum Disorder is a debilitating condition that affects the lives of many New Zealanders," Justice and Courts Minister Amy Adams says of Sherwood's study.

"I am interested in research that helps improve the effectiveness of our justice system and builds on the measures already in place to support people with FASD and other neurodisabilities to participate effectively in the court process."

PARENTING WITH FASD

Anita Gibbs adopted her sons, brothers Ruslan​, now 14 and Dima​, 12, from a Russian orphanage in 2007.

The family knew there was a strong chance of the effects of early trauma emerging as they get older.

"We always knew that there would be challenges, strengths and weaknesses," says Gibbs. "Over time, it has become more obvious, and we've become more and more knowledgeable."

The boys were both diagnosed with FASD about 2013, and Gibbs, noting the lack of health services in New Zealand at the time, began facilitating a parental support network for other parents of children with FASD from her Dunedin home, where she is a sociology associate professor at Otago University. 

Among the group are birth mothers who fight stigma, Gibbs says. 

"It's definitely hard and they will feel guilty – absolutely – for some of the birth parents it wasn't even particularly excessive drinking, that's the point, this is one thing we need to educate our girls and young women about." 

She has also been to Canada to hear about its advanced systems for dealing with FASD – which now includes police officers who specialise in working with offenders who have the disorder.

Having a diagnosis for her boys means the family is attuned to their needs.  

That has meant juggling a need to have one stay-at-home parent at all times with their own careers, and managing the children's hyperactivity – routine helps them, and ideally they exercise for as many as five hours a day, says Gibbs.

Their schools have been excellent – but while the community is well-resourced and welcoming to her sons – she knows other families who struggle to afford the amount of attention children who have FASD need, and have endured battles with less-understanding schools over behaviour issues.

As Ruslan and Dima grow older, teaching them skills like understanding money and comprehending when people might be taking advantage of them are challenges, says Gibbs.

But she feels confident the boys have some independence in their future. 

"We are trying to help them as much as possible to have a positive outlook and life."

 - Sunday Star Times

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