Professional women are swelling the ranks of mums giving birth to children with fetal alcohol spectrum disorder, a form of brain damage that affects thousands of New Zealanders.
Byron Jones seemed just like a typical ADHD kid. He struggled to manage his behaviour, emotions and attention. He couldn’t sit still. School was hard and he was always getting into trouble. Medication for ADHD (attention deficit hyperactivity disorder) prescribed in his early teens didn’t help a whole lot. “It turned me into a zombie.”
He was adopted from Guatemala by a “loving” Kiwi family when he was 7 years old. “I had a nice childhood and I think I was a good boy but when I struggled to understand, or if there was conflict of some kind, I’d get really frustrated and angry. I struggled mentally in ways that I didn’t understand.”
Self-medication with alcohol and drugs led to his problems spiralling. Concerned there was more at play than ADHD, his mother took him to clinical neuropsychologist Dr Valerie McGinn, who diagnosed him with fetal alcohol spectrum disorder (FASD) when he was 15.
FASD is a neurodevelopmental disorder caused from prenatal exposure to alcohol. It mainly affects the developing brain of the fetus and can cause lifelong issues with behaviour and learning. It’s a leading cause of disability in New Zealand, according to the Ministry of Health.
Jones was later told people with FASD are frequently misdiagnosed with ADHD. “I had lots of things that mimicked ADHD but they were really symptoms of FASD.”
With the right support, he managed to qualify as a chef. At 27, he is now a sober father of three. He is also an FASD advocate and is determined to change misconceptions about the condition. “People aren’t always correctly informed about FASD.”
Most go through their lives without knowing why they have the problems they do and why life is so hard.
McGinn is New Zealand’s leading expert in FASD and clinical director of the FASD Centre Aotearoa. For years, she was the only clinician who could diagnose the condition here. That’s slowly improving but she says most doctors still have a poor understanding of FASD. That lack of knowledge means the potential for misdiagnosis with conditions such as ADHD and autism spectrum disorder (ASD) is high.
“What we know is that 60-70% of people with FASD have the ADHD part going with it,” says McGinn. “And what we don’t know is how many people who are diagnosed with ASD actually have FASD.”
The factor that differentiates between the conditions is prenatal alcohol exposure, the sole cause of FASD. This is thought to be from the mother drinking while pregnant, although researchers are looking at how the father’s alcohol consumption before conception may have an effect.
McGinn says a lot of women drink when they don’t know they’re pregnant, or are unaware alcohol can harm a fetus. Some women will discuss drinking in pregnancy but others won’t because they’re ashamed, or they can’t remember.
Not all doctors will ask about it. “Even now, paediatricians are not always asking about prenatal alcohol exposure,” she says.
Just one drink
Kiwi women do like to drink. Data from the NZ Health Survey 2023 shows that 73% of them drank alcohol in the previous year. Alcohol researcher at Massey University, Professor Sally Casswell says one in five women of childbearing age engage in heavy episodic drinking, a term used by the World Health Organisation. “That means [they] drink six or more drinks in one sitting,” she says.
Only 60% of pregnancies are planned, according to the Growing Up In New Zealand study. It finds that women who had unplanned pregnancies were twice as likely to report drinking alcohol in the first trimester but for the following trimesters there was no difference.
Of the total, 23% drank in the first trimester and 13% in the following trimesters, putting their babies at risk, because, depending on the timing, just one drink can cause damage in fetal brain development.
Women with no secondary school qualifications or who are Māori are more likely to drink during pregnancy, the “Growing Up in New Zealand” longitudinal study found in 2018.
But FASD doesn’t just exist in poor areas or among the poorly educated, McGinn says. Having diagnosed the vast majority of cases in New Zealand, she says professional women represent “the second-highest group of drinkers with risks of having babies with FASD”.
Despite the large numbers of babies exposed to alcohol during pregnancy, the number of FASD diagnoses is low – only a few thousand people have ever been diagnosed with it here, says Leigh Henderson, chairperson of Fetal Alcohol Spectrum Disorder Care Action Network (FASD-CAN) Aotearoa New Zealand.
But the low rate of diagnosis could well be because of limited resources in the public sector for a time-intensive process and the prohibitive cost of going private – about $9000.
Prevalence of the condition here is worked out on estimates from overseas figures, which indicate FASD could affect 3-5% of the population, she says.
“That’s between 1 in 20 and 1 in 30 people. There’s a 1 in 13 chance of having an FASD baby if you drink alcohol in pregnancy.”
Ministry of Health figures tally with this – an estimated 1800-3000 babies are born with FASD out of a total of about 58,000 births each year. The ministry says up to half the 4200 children in Oranga Tamariki care could be affected.
But some affected people don’t show signs until their teenage years. “Even then, you might not suspect there’s something going on. A lot of people don’t know until they’re 40, 50 or 60,” says Henderson.
Undiagnosed & in trouble
Prisoners in this country haven’t been tested but international numbers suggest up to 30% of the population could have FASD.
Beyond that, it’s impossible to pinpoint just where people with undiagnosed FASD are, but given it has such a wide spectrum, they could be hiding in plain sight – potentially diagnosed with another neurodevelopmental disorder or not diagnosed at all.
“Most kids with FASD currently slip through and are not diagnosed in New Zealand,” McGinn says. “They tend to get stood down then excluded from school for not learning and behaving like neurotypical children.” FASD symptoms also include immaturity, poor concentration, slow learning, emotional ups and down, doing things without thinking them through, difficulty co-operating and getting off side with others.
“They may go on to gain but not maintain a job, have mental health problems, addictions, be homeless or couch surf, be victimised or commit offences.
“It’s a severe disability and most go through their lives without knowing why they have the problems they do and why life is so hard.”
Henderson says there’s a perception that people with FASD have facial abnormalities, a low IQ and are born to mothers with severe alcohol addiction. In reality, the facial abnormalities, which can include small eyes, thin upper lip and a smooth philtrum (the groove between the nose and upper lip), exist in only about 5% of the FASD population, she says. Intellectual disabilities affect only about 20% of those affected by FASD – IQs can range from 20 to 130.
A diagnosis is made when at least three areas of the brain are affected, such as short-term memory (speed of processing information), emotional regulation (impulsivity) and executive function (organisation, logic and recognising consequences).
That list is remarkably similar to the diagnostic criteria for ADHD and autism. Henderson says as well as the high possibility of FASD and ADHD co-occurring, people with FASD also have a three-fold higher risk of having Autism Spectrum Disorder.
ADHD New Zealand reports about 280,000 people have ADHD and Autism New Zealand estimates the number with Autism Spectrum Disorder (ASD) at 159,000.
Finding out if a woman drank alcohol during pregnancy is not easy. A clinical approach with a kind, non-blaming attitude is key, McGinn says.
Often, women don’t remember if, when or how much they drank in pregnancy and some are reluctant or ashamed to talk about it. She has met hundreds of women with FASD children and says none of them knowingly drank to hurt their babies.
There’s a one in 13 chance of having an FASD baby if you drink alcohol in pregnancy.
She says some doctors might use ASD as a preferential diagnosis because a person diagnosed with that is eligible for disability support services, whereas people with FASD who have an IQ over 70 don’t.
“Well-meaning paediatricians will diagnose FASD people with a few autism symptoms just so they’ll get disability support.
“But the problem is, they get the wrong kind of support. All the things that you recommend that you do to assist someone with ASD are entirely different to the things that help people with FASD.”
Though there are commonalities, there are also significant behavioural differences between FASD and autism, McGinn says. The FASD contingent are more outward-looking than those with ASD and don’t engage in typical behaviours, such as repetitive movements. “Also, they’re incredibly sociable. People with FASD want your attention.”
Yet diagnoses for FASD remain low, and it might be down to lack of resources and time.
Hawke’s Bay paediatrician Dr Russell Wills says all clinicians would like more time for complex assessments. “There’s an explosion of neurodiversity and referrals for complex developmental issues to paediatrics now. To get through more referrals with the same FTE, it means time will be very limited to do those complex assessments that we’d all like to be able to do.”
Wills, a former children’s commissioner and now chair of the Paediatric Society of New Zealand Child Protection Clinical Network, knows of no clinicians who might have purposefully given an ASD diagnosis over a FASD one. However, he says there could be people with ADHD who have FASD. The two groups can have the same challenges with concentration, distractibility, hyperactivity, planning, organising and learning difficulties. Most of the referrals his team receives are for children with suspected ADHD. “The usual referral is ‘query ADHD’, ‘query development’. And they’re often misdiagnosed as ADHD.”
A $4.8 billion problem
The former minister of health, Shane Reti, did not sit on his hands on this issue when National came to power in 2023, announcing a FASD prevalence study and other initiatives early last year (see “Training & prevention moves”, below).
Wills says the study will be crucial in painting an accurate picture of FASD in New Zealand, as fetal harm is at epidemic levels. There’s also the financial cost. A New Zealand Institute of Economic Research report last March found the disorder makes up 52.7% of the $9.1 billion of alcohol harm in New Zealand.
Massey’s Sally Casswell led a study published in May that showed disability from FASD was the main contributor to alcohol’s harm to others in New Zealand, at 90.3%. Other factors were traffic crashes at 6.3% and interpersonal violence at 3.4%. “We were just amazed by the extent of the disability associated with FASD,” says Casswell.
There is no safe amount of alcohol in pregnancy – even a small amount can cause FASD, Wills says. “I have seen children with FASD whose mums drank only once in pregnancy. It could be from just a few drinks after work – not very excessively.”
But potential damage to a fetus depends on timing. “Many women don’t realise they’re pregnant until after eight weeks, by which time most of the damage has been done to the early development of the fetal brain.”
And there’s no way of predicting the level of harm from alcohol in pregnancy. “Some women and babies appear to be more vulnerable to a small amount of alcohol than others. And we can’t predict who those women are.”
McGinn says binge drinking – five standard drinks of alcohol or more in one sitting – is the most dangerous to a fetus, although lesser amounts can still cause harm.
“Generally, we don’t diagnose FASD, which is a severe pervasive disability, on a really low level of drinking.”
FASD babies usually appear normal at birth, following a normal pregnancy, says Wills. “They might be a little bit early or a little bit small at birth. They feed normally.”
They are often quiet babies and most meet their development milestones on time. Problems such as hyperactivity and impulsivity sometimes appear in toddlers and are often noticed by early childhood educators. “It looks like early-onset ADHD.”
Figuring out what is normal or extreme hyperactivity in toddlers is difficult. “All toddlers are hyperactive and impulsive anyway,” says Wills.
Moral overtones
Like a lot of ADHD children, FASD kids often struggle at school and disengage from learning. “They believe they can’t learn and there’s no point in trying. They get further behind and become disruptive.”
People need to see FASD as a disability issue, not a moral one, says Wills. “It’s sad that these kids get labelled as naughty and stupid and failures. Their parents do, too. It’s not fair, it’s not right and it’s not helpful.”
If parents are concerned their child has FASD they can ask their GP for a referral to child development services, he says. Confirming the diagnosis doesn’t happen until the child is about 8, when the necessary cognitive testing can begin. Yet, an early diagnosis means interventions can start earlier, leading to better outcomes.
Leigh Henderson says families need to be supported in how to parent their FASD children because many will otherwise “give up” on them. She says the support is in terms of schooling, parenting styles and an awareness that children with FASD have brain damage and sometimes can’t learn from consequences. They need to be steered away from getting into trouble and if they do get into trouble, they need help to get out of it.
McGinn backs this up, saying parental help for a child with ASD is entirely different from the help you give a child with FASD, so a parent can easily find themselves going down the wrong path with support that doesn’t seem to fit their child.
Henderson adds even confronting the possibility of FASD in your child is not easy. “No one wants the label because of the stigma attached. But it’s not about blame – of the parents or the child.”
Recently, the care action network has helped a “wonderful birth mother” whose late-diagnosed FASD son is in his 20s. “She didn’t know the dangers of drinking when she was pregnant. But since he was diagnosed, she’s done everything for him to protect him and get him the right help. She’s worn it, and that takes courage.”
Training & prevention moves
Last september, then-health minister Shane Reti announced a $4.85 million suite of actions addressing Fetal Alcohol Spectrum Disorder, including a study to find out how many have the condition, a prevention campaign, training of more clinicians to diagnose and treat, publishing new diagnostic guidelines and reviving an FASD action plan.
The funding built on moves last April to get the ball rolling, when Reti said, “As a GP, I know FASD is a condition that has gone under-recognised and under-supported for too long.”
It’s not the first time a government has tried to tackle FASD. About 10 years ago, associate health minister Peter Dunne attempted to address the issue, launching a three-year action plan.
This new package includes a community-led pilot programme providing tailored support to family and caregivers of people with FASD, which started last May, and initiatives to promote alcohol-free pregnancies and reduce the stigma of FASD.
Alcohol Healthwatch executive director Andrew Galloway says the government’s initiatives are a good start but prevention campaigns haven’t worked in the past.
“We do know that what is very likely to work is any intervention that effectively reduces alcohol intake in women of maternity age.”
That includes raising the price, restricting advertising and availability.
Leigh Henderson of the Fetal Alcohol Spectrum Disorder Care Action Network says the government needs to focus on supporting people with FASD and their families directly, by treating FASD as the disability it is.
