There is no data in New Zealand to indicate how many people suffer from FASD but an expert suggests between 3-5 per cent of babies born have been exposed to alcohol. Photo / Getty Images
When Whangārei woman Jane* and her husband adopted two children – a 5- and a 7-year-old from Russia – they didn't know both had been exposed to alcohol in the womb.
It took years to find out that the children were suffering from fetal alcohol spectrum disorder (FASD) and even after the diagnosis came, their struggle continued because FASD is underfunded, underestimated and undetected in New Zealand.
A new report by the Human Rights Commission confirms that the rights of people with FASD are breached because they can't access the help they need.
"When we adopted them we weren't aware that they had any intellectual disabilities," Jane said.
"You have to go through quite a rigorous process. We weren't willing to accept children who have any intellectual disability so we weren't at all prepared for that.
"But as our children got older it became more and more apparent that there was something wrong."
FASD is a lifelong, irreversible disability that is caused by maternal alcohol consumption during pregnancy.
When a woman drinks during her pregnancy – at any stage of gestation – it can cause brain damage in her baby, which leads to FASD.
Unlike mental illnesses which can be medicated, FASD is an intellectual disability that can't be medically treated and cured.
Dr Valerie McGinn is New Zealand's first paediatric neuropsychologist and pioneered the field of FASD in this country back in 2007 when little was known about the condition.
The clinical diagnostics today is done through neuropsychological testing – McGinn's field of expertise.
"We look at 10 different brain domains [including] memory, concentration, motor skills, language. When there is a certain number of impairments found then the diagnosis is made."
Symptoms vary between individuals. Affected people may have poor memory, difficulty understanding complex situations, problems with learning and trouble with impulse control.
They are often immature compared to people their age and are slower to meet developmental milestones.
We don't know how many cases of FASD exist in New Zealand because the data is not being collected – all local research is based on overseas studies.
For Jane, it was a shock to find out her kids were affected.
"It's hard enough bringing up adopted children but adopted children who also have intellectual disabilities. We were struggling in every way in trying to provide what they need."
When the children were adopted they didn't speak English so some of their symptoms were masked by the existing language barriers.
Jane and her husband initially put the behavioural issues and problems at school down to communication issues and adoption trauma.
But as a parent you have a bit of an inkling when something isn't right, Jane said, but no one helped the family and they could only access resources online.
Her son, who is the younger sibling, was 11 when he was officially diagnosed.
But knowing what was wrong didn't give the family access to support because the Ministry of Health is just starting to put services for FASD in place after years of disregard.
"Despite the fact that there is a lot of expertise and interest in FASD, the Government doesn't do the work," McGinn said.
"The Government excludes people with FASD from any disability support services.
Ministry of Health admits, 'Yes, FASD is a problem,' but 'no, we're not going to do anything about it.' That hamstrings us professionals."
McGinn described the lack of services as "the greatest inequity and discrimination of any disabled group".
"As far as I know, FASD is the only group that is discriminated against in such a way and it has probably something to do with our drinking culture, and New Zealand as a whole not accepting that drinking is causing damage in children."
The Ministry of Health (MoH) put out an action plan in 2016 where they recognised that FASD was under-supported and set goals for 2019.
An April 2021 update read that most work was put into prevention campaigns and learning tools for schools as well as physicians.
However, goals stated in the action plan, such as providing "a clinical pathway for FASD [that] has been developed, tested, endorsed and implemented in all DHBs" or even creating a "baseline for the incidence of FASD" have been missed.
Most money that goes into the FASD action plan comes from the Proceeds of Crime Fund – cash and assets that have been obtained from criminal activities.
"It's no way to fund health," McGinn said.
Since the April update, MoH has commissioned the development of a New Zealand-specific FASD clinical diagnostic guideline, provision of mentoring and support for families and a research project to identify an effective whole-of-system response to FASD.
"The Ministry of Health has funded FASD diagnostic training workshops and supports clinical networks of professionals," a spokesperson said.
When asked what support people affected by FASD received, the ministry said it varied between individuals who would have different needs.
Work was currently under way to implement the Budget 2019 allocations of $455 million for expanding primary care and addiction services and $35m over four years to expand the capacity of Disability Support Services' Child Development Services (CDS).
"The CDS improvement programme is allowing more children to access these services, including children with developmental delay due to fetal alcohol exposure," an MoH spokesperson said.
None of this has reached Jane's family. Their FASD journey has taken them down many paths that ended with brick walls.
"New Zealand is not at all set up to deal with it in terms of health and educational services," Jane said.
"Unlike other disabilities like autism you don't get additional funding from the Ministry [of Education].
"Parents like ourselves have to end up paying ourselves to get teacher aides, which we got for our son because he was struggling so much."
Jane said as parents they were ignored, not taken seriously or even blamed for their children's behaviour.
They tried different approaches to address her son's impairments, which are more prevalent than the daughter's, but nowhere they turned did they receive anything particularly helpful.
"Even the disability services that are set up are incredibly poor. They don't know anything about it and have no experience with it."
An exception is the FASD Care Action Network – a charity completely run by unpaid volunteers who build links between affected whānau, advocate for them and provide information.
FASD CAN chairwoman Leigh Henderson agrees with Jane and McGinn in saying the Government needed to step up.
How dire the situation can be comes to light when families like Jane's speak up.
"It takes a massive toll on you – on your relationship. Because you've got these kids that are acting up and it ends up with disagreements in the family of how to deal with it."
The finances also suffer as Jane and her husband have to pay for special services, like teacher aides.
"These kids are also incredibly good at breaking and losing things. It makes you very poor."
Then there is Jane's mental health.
"It is just so exhausting," she says. You've got to be on duty 24/7. You don't get a minute off. If you switch off, some disaster is bound to happen in front of your nose."
Her son is 19 today, her daughter 21. Transition into adulthood brings its own set of complications.
People with FASD are often not equipped to live independently, know how to get a house or how to look after themselves. They have trouble managing daily life and get easily stressed.
"My son has got a lot of anti-social behaviour which is hard to correct. It's very difficult to keep him out of trouble."
Due to their impairments, people with FASD often fall foul of the justice system.
McGinn, who has been diagnosing children non-stop for the past 12 years, says many of those kids she now meets again – this time in prison.
"They are not bad people."
However, their gullibility makes them vulnerable, and they can easily be tempted to make bad decisions when they trust the wrong people.
In Australia, 36 per cent of the youth prison population has FASD.
McGinn reckons the numbers in New Zealand are significant, as is the money spent through the justice system.
"Huge money is being spent but it's at the bottom of the cliff and it's not giving them any quality of life, it's just containing them if they behave inappropriately."
To stop the vicious circle of drinking and passing disabilities on to children through generations, the culture around alcohol has to change.
Jane says it's a shared responsibility and hopes more people realise how harmful drinking can be.
"It's not a matter of what one individual woman does," McGinn agreed. "One has to look at the whole society. Alcohol permeates every aspect of it."
In Canada 3 per cent of children born each year are later diagnosed with FASD.
McGinn says New Zealand's problem was more severe and her guess is around the 5 per cent mark.
While we have no data on the prevalence of FASD in New Zealand, Alcohol Healthwatch estimates that half of all pregnancies are exposed to alcohol.
More than 80 per cent of adult males and females drink, and two in five pregnancies are unplanned, meaning there is a high chance fetuses could be exposed to alcohol.
"People do not realise, including women in pregnancy, that alcohol causes brain damage. It's glossed over and minimised," McGinn said.
She also pointed out that all socio-economic groups are affected.
The MoH action plan recognises that by investing in prevention and disability support, money will be saved in the long term. Everyone would win.
If adequate support was put into place, people with FASD "can really blossom and do well", McGinn said.
And it shows: after going through tough years, Jane's daughter is doing well today.
She is now attending a technical college in Auckland doing an art degree and is also working part-time.
"She is coping well. I think she has got a very good life ahead of her."
*We changed Jane's name to protect her privacy.
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