By Paula Penfold and Louisa Cleave
Mar 6, 2022
In 1993 in Northland a little girl, Hannah*, was born full term and a healthy weight on the floor after a party. She cried on delivery and fed straight away.
Her mother, Mere*, took her to hospital and from there to another party.
The pregnancy had not been planned; Mere didn’t know who the father was. When she found out she was pregnant at three months, Mere didn’t stop or cut down her drinking. She was an alcoholic who “everyday popped the bottle...drinking anything to make me drunk”.
Mere continued to be drunk throughout Hannah’s childhood and, while she took her everywhere she went, looking back, Mere knows she would not have been fully available to protect Hannah from harm.
“There were lots of men in the house: gangs, violence, drugs.”
Hannah’s first word, says Mere, was bitch.
Hannah was a crabby baby who was “disturbed” from birth, who couldn’t sit still or focus at school so consequently didn’t go much.
“She was always angry … at anything.”
With Mere in and out of prison for drug offences, at 9 years old Hannah was taken into state care. At 14, she went to live with her older brother, and her induction into the gang world and her own criminality began.
At 21 she went to prison for the first time, and by 25 she was back in court on serious charges: kidnap, aggravated robbery, supply of methamphetamine.
Notes from a prison meeting with her lawyer, Jo Wickliffe, record Hannah being “a bit all over the place – skipping from subject to subject. Hard to engage with her on any topic for long”.
Wickliffe referred her client to neuropsychologist Dr Valerie McGinn, a world-leading authority on Fetal Alcohol Spectrum Disorder (FASD) for assessment.
McGinn had spent much of her career working in traumatic brain injury, but in 2008, seeing children with severe brain damage that couldn’t be accounted for by a specific traumatic event, she began to learn about FASD, training in Canada and the United States.
Clinicians such as McGinn strictly follow internationally developed guidelines for FASD diagnosis, because there is no New Zealand-designed protocol.
The assessment takes place over a series of meetings, using multiple tests designed to measure 10 domains of brain function, including cognition, language, motor skills, attention, and memory. Can they problem-solve? How do they make decisions?
The first of those meetings with Hannah took place while she was on remand at Auckland Region Women’s Corrections Facility, and she was “pretty stroppy”.
“Things hadn’t been going well for her in prison and she got easily stressed.”
It could be something as simple as the clothes she had to wear.
“The orange jumpsuit that they put them in, and they tape the top so tight,” says McGinn. “And when you’ve got FASD, you can’t tolerate sensory things as well.
“So it was, ‘who’s this person coming to see me? Why am I taped up like this?’ She was pretty agitated.”
Hannah’s results identified problems in seven of the 10 brain functions tested.
The next step in diagnosis is to confirm prenatal alcohol exposure. But how do you begin that conversation?
“The interview with the mother is not an accusing kind of interview,” says McGinn. “It’s, well, ‘this is what I noticed about your daughter. Have you noticed that throughout her life? Is that how you see it?’”
Mere’s response was the same as it is for most of the mothers McGinn meets: she didn’t realise she was causing harm to her unborn child, that the alcohol she was drinking passed undiluted into the blood supply of her baby.
“That never crossed her mind. And it's only now that I've confronted her with it and talked about it and explained what FASD is that she goes, ‘yes, you’re exactly right. That’s exactly what’s wrong’. And that takes a lot of courage.”
McGinn took her results back to prison to explain to Hannah there was a reason she’d had such a difficult life, that she was so easily stressed, easily led. She had a disability.
The lengthy written assessment notes that even taking into account all the other adversities Hannah had suffered as a child – “which would have further compromised her development” – she well exceeded the criteria for diagnosis of FASD.
“And she’d never been diagnosed. She was definitely a disabled woman in prison.”
Hannah gave permission for Stuff Circuit to tell her story, telling us through her lawyer that there were so many other women like her in prison who should also be assessed.
We were looking forward to meeting Hannah when she was released on parole last October to a rehab centre. But it was in the middle of Covid lockdown and we weren’t permitted to visit.
Within two weeks she was back in prison again.
We never did get to meet her.
The term Fetal Alcohol Syndrome (FAS) – the American spelling has been adopted internationally for consistency – was first used in 1973 by two Seattle physicians who called it a ‘tragic disorder’. It took until the mid-1990s for New Zealand to begin to acknowledge what’s now known as FASD.
It is a lifelong neurodisability with a mortality rate 4.3 times higher than the general population; an average life expectancy of 34 years, with premature deaths often due to recklessness or impulsivity.
“They need to be protected from their own impaired decision-making,” says Valerie McGinn.
While it’s known that children with FASD will fare better if they are diagnosed before the age of 6, in New Zealand the majority never will be.
Instead, they are frequently – wrongly – thought to simply have behavioural problems, and if there is any kind of intervention it will usually be behaviour-based therapy.
“So there’s a lot of talk about shaping behaviour,” says Sarah Goldsbury, “and use of reward charts to encourage positive behaviour, or consequences for bad behaviour. But when a child has underlying brain damage, the normal behavioural principles don’t apply.”
When they’re used anyway, the child will likely become negative and defiant, often leading to their being excluded from school, even at a very young age.
If they are lucky enough to be referred for assessment and get a diagnosis of FASD, even then they’re unlikely to get help: bewilderingly, Ministry of Health policy explicitly excludes people with FASD from accessing Disability Support Services (DSS), unless they are also assessed as having an IQ below 70.
Dr McGinn says IQ is entirely the wrong measure, because only a small percentage (23 per cent at her clinic) of people with FASD have an IQ low enough that would qualify them for DSS.
But they’re all in need of help. ‘Spectrum’ does not put people on a scale from mild to severe FASD: in order to be diagnosed, they must have severe impairment in at least three brain domains. In other words, everyone with FASD has severe brain damage.
“There are thousands of disabled individuals with FASD left to fend for themselves in Aotearoa,” she writes in a brief of evidence to a forthcoming Waitangi Tribunal hearing.
“Specifically excluding them from the disability support they need negates their very existence, and causes immeasurable harm…”
McGinn is well-qualified to make that assertion, estimating she’s assessed about 500 people for FASD, about 200 of those within the criminal justice system.
“Sadly, many young people that I’ve known when they were younger, I am now visiting in prison,” says McGinn, “because they have offended and not had their disability needs catered to”.
If they were stressed and disadvantaged at school, entering the justice system with an undiagnosed brain impairment must be daunting.
“Many, if not most, have language impairments. Courts are a language-rich environment. They pretty much all have impairments of judgement and reasoning. And some of them confabulate, which is to make up things that are not true,” says McGinn.
“So you put them in a police interview room with a couple of sophisticated questioners and they might even tell you something which might not relate to the facts at all, but they can’t evaluate that.”
New Zealand’s most recognised such case is that of Teina Pora. McGinn’s diagnosis of Pora’s FASD was the key piece of evidence that led to the Privy Council quashing his convictions for rape and murder in 2015, after he’d been wrongfully imprisoned for 21 years.
She has no doubt there are many, many more like him.
“They’re responding in a way that they think will give the person what they want to hear so that they can get themselves out of that stressful situation, without realising that can be used in court and can be used against them.”
Asked whether her reports are welcomed in court, McGinn stifles a laugh.
“Um, they’re often not welcomed. I would say they’re pretty much always welcomed by the judge, because that’s the whole point of a report, is to inform the court so they can make a decision.
“But we often don’t have prosecutors in New Zealand who are FASD-trained and aware. So there can be this misconception that a disability is used as some sort of excuse.”
To get a lighter sentence?
“Yes, or to excuse bad behaviour. And it’s not really an excuse, it’s just a reason. There’s a reason why people with FASD behave differently. And the reason is that they have brain damage. It’s just not well recognised in New Zealand.”
Thomas Morrison, whose story is told in Stuff Circuit’s documentary Disordered, exemplifies that path, his adult life an endless cycle of offending, prison, release, reoffending, prison again.
In her neuropsychological assessment of Morrison, Dr McGinn writes, “The major care facility for adults with FASD in New Zealand is prison.”
It sounds harsh, and certainly Health Minister Andrew Little takes offence when we put the line to him in an interview.
“It is not a guarantee that because you have FASD therefore you are a criminal,” he said. “So let’s please not stigmatise people with FASD”.
Nobody, least of all McGinn, wishes to do that. But her summation is hard to argue with for two reasons.
First, there is no actual care facility for adults with FASD.
Second, look at the numbers. Well, more accurately, have a guess at the numbers, since they’ve never been measured here – the best we can do is extrapolate from overseas research of prison populations. Studies in Canada and the US suggest between 17 and 25 per cent of prisoners have FASD.
In the context of New Zealand’s comparatively worse drinking culture, McGinn places our numbers at the top of that range. With a current prison population of about 8000, that would mean there are at least 2000 people with Fetal Alcohol Spectrum Disorder in our jails.
“And they’re nearly all undiagnosed, and they are all mixed in with the general population of prisoners,” she says.
“It’s completely inequitable to think that we have a group of disabled people in New Zealand who, through no fault of their own, have got brain damage that means they can’t manage life and behave responsibly without support.
“And instead of supporting them, we leave them to their own devices, and then punish them for doing the wrong thing.”
Imprisonment doesn’t fix it, either, she says, because punitive measures don’t work, given it’s not a behavioural issue.
Which is why usually when someone with FASD is released from prison nothing changes; they carry on with their lives the way they did before, and end up back in prison, time and time again.
When Stuff Circuit met Jody for Disordered, he’d recently been released after his 17th prison term.
Down the road, in Hawke’s Bay, a specialist team is diagnosing 30 to 40 children a year with FASD. The numbers could be higher but there isn’t the capacity to deliver the service to more people.
“It’s not an FASD diagnostic service as some parents would like, because that’s not how kids present,” explains paediatrician and former Children’s Commissioner Dr Russell Wills.
He’s part of a multidisciplinary team working on the Developmental Assessment Programme to diagnose tamariki with complex developmental and behavioural issues.
His colleague, paediatrician Dr Kate Robertshaw travelled to Canada and the United States to learn about formal assessment for FASD in 2010, and since then has led the programme to ‘’something that is absolutely world class’’, says Wills. “It really is quite unique in New Zealand.”
The team assesses children for a variety of neurodevelopmental issues.
“Children don’t present with a diagnosis, they present as throwing chairs and tables and not learning, and people tearing their hair out. Some have autism, some have intellectual disability, some have attachment and trauma issues from parental violence and mental illness and addictions. Some have FASD, some have some combination of several of those. The team’s job is to figure out what’s been going on for a child and what’s most likely to help.”
They work closely with schools in low decile suburbs and with Oranga Tamariki.
“All services like this have a waiting list because the demand is high,” says Wills. “If 3 per cent of deliveries are alcohol-affected then about 60 babies [with FASD] a year are born in Hawke's Bay. We have the capacity to see half that, so those we see tend to be the most severely affected.”
Since the programme began, the number of referrals for tamariki Māori has increased and the age of diagnosis is younger; statistics welcomed by the team because they know their work will make a difference to those lives.
“There’s no question that early diagnosis and early intervention in neurodisability changes lives. Children are much more likely to complete school, leave with qualifications, have the mental tools to cope with stress, understand their condition, to self-manage, and less likely to leave school without qualifications and be welfare dependent and involved in the criminal justice system.”
An evaluation found the Hawke’s Bay model could be a blueprint for FASD assessment nationwide but required specialist training. It also found there wasn’t enough support available for children after they’d been assessed as having FASD.
Which is what we keep hearing, everywhere we go, from everyone we speak to.
There certainly wasn’t enough support for long-term, small-time offender Thomas Morrison.
In 2019, Dr Valerie McGinn recommended to the court that Morrison be referred for an assessment for disability support services.
That assessment never happened.
In 2021, with Morrison about to be released from prison yet again, McGinn, along with Public Defence Service lawyer Leah Davison, made renewed, desperate efforts to get help for him. That help never arrived.
In a letter from prison in mid-2021 to the Special Circumstances Court where he was about to be sentenced, Morrison describes — arguably better than anyone could — what’s wrong with the system.
In four pages of his beautifully formed hand (albeit with the kinds of errors you’d expect from someone with his condition) he writes, “I do feel in a way that I am being punished for having FASD rather than criminal behaviour, because I really have tryed hard to get the best appropriate help to manage my FASD therefor prevent further offending but unfourtnly feel I havint received it.”
“I don’t intend or purposely do the things I do & I am very sorry & regretful for what I have done, all the harm & hurt Iv caused people because of my offending.
“I really am trying to be a better person & progress forward but realise I need help to do this & prison isn’t the place for me to be able to do this.”
He writes too, to his lawyer Leah Davison, of just how hard it’s been to live his life.
“I don't want to be this person anymore, hurting the people that mean the most to me, stressing my Dad & myself out, pacing a cell most nights wanting to cry because I know with the right help I can be better than this.
“I just want to be a better person, live a better life. I am trying, Leah, I really am.”
*Names changed to protect identities
Words by Paula Penfold and Louisa Cleave.
Design and development by Alex Lim.
Artwork by Toby Longbottom.
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