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The women out to dispel myths about fetal alcohol spectrum disorder

Anita Gibbs and her sons, who both have FASD. Photo/Clive Copeman/Supplied

There is a growing call for sufferers of fetal alcohol spectrum disorder to be recognised and supported.

Every week, Eleanor Bensemann leaves her Kāpiti home to drive north to see her 22-year-old grandson. Daniel no longer lives with her, but she raised him for much of his life. He was eight when he first got into trouble with the law, then he spent his time as a teenager in and out of the courts and living on the streets.

Bensemann has been unable to get him specific help for what is a misunderstood and poorly diagnosed condition, fetal alcohol spectrum disorder (FASD). Daniel has been violent towards her at times. Before a trip north to see him, she told the Listener, “I never know what he’s going to be like when I get there.’’

Daniel’s birth mother stayed on the booze as her unborn child grew. She and the boy’s father (Bensemann’s son, who died in an accident when her grandson was just 10) were binge drinkers. Daniel’s older sister has also been diagnosed with FASD.

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Bensemann doesn’t know how much Daniel’s mother drank while pregnant, but her behaviour was enough to give her grandson what she terms “brain damage in the womb’’.

“If you had a newborn baby, you wouldn’t fill its bottle up with vodka. A developing baby’s organs aren’t equipped to cope with alcohol, nor is its brain.’’

The lack of support for those living with FASD was highlighted last month, when 24-year-old sufferer Tamaki Heke was suspected of killing himself at a mental-health unit.

For many years, there was a view that babies exposed to alcohol in the womb were born with telltale physical signs: growth retardation, a smaller head, distorted facial features. However, over the past decade, that myth has been busted, as clinicians begin to diagnose and treat children and young adults with the neural disability.

Those working with FASD sufferers here point to Canada as a role model. There, children and young adults with FASD wear a MedicAlert bracelet, and Alberta (which has the same population as New Zealand) spends four times the amount we do each year on services and research to prevent and treat FASD. In Canada, a diagnosis gets a package of care; in New Zealand, a child or young person doesn’t, because, unlike autism, it is not defined as a disability.

Still much to be done

Critics say that services are ad hoc and depend on where you live. They are also calling for FASD to be regarded as a disability, regardless of intelligence quotient (IQ), so that sufferers such as Daniel can get services and support, bringing the condition in line with autism and attention deficit hyperactivity disorder (ADHD).

Those trying to help sufferers say it is a hidden epidemic. Associate Professor Anita Gibbs, of the University of Otago’s sociology department, knows more about FASD than most as she sees it at the coalface. Her two sons, aged 14 and 16, whom she adopted from a Russian orphanage in 2007, have FASD. She says it is estimated to be two and a half times more common than autism. Gibbs is part of a multidisciplinary group calling for sufferers to be recognised and supported.

“If FASD was included alongside other disabilities, such as autism, it would be a massive win for families and open up funding and support and acceptance from the wider society.’’

Getting kids diagnosed

Her sons were hyperactive, and diagnosed with ADHD, but it wasn’t until 2014 that they were diagnosed with FASD. Pointing to a crossover between the two disorders, she says: “I suspect that a lot of kids are misdiagnosed with ADHD.”

Her 14-year-old son suffers the most. With the reasoning age of an eight-year-old, he is argumentative, impulsive and drawn to the wrong groups of friends. “When he has a bad day, it’s bedlam,” she says. He was frequently suspended from school last year because he was unmanageable, and has finally got a teacher aide. “That’s only because I’m loud and I know how to get action. But there are so many families tearing their hair out because they’re suffering on their own.

“We need these kids diagnosed by six years old so they can get help in schools and the support they need, or they’ll end up in our youth justice system.’’

Andi Crawford. Photo/Supplied

A vulnerable group

When she returned from maternity leave in 2005, clinical psychologist Andi Crawford started treating a number of children in middle childhood with learning and behavioural difficulties. “It turned out they had had prenatal alcohol exposure.’’

Since then, the mother of two has devoted her career to understanding, diagnosing and treating FASD.

In her role with the Hawke’s Bay District Health Board’s child development service, she sees children who have been mistakenly diagnosed with autism or ADHD, until she finds that their mothers drank alcohol during pregnancy.

“They’re not presenting with straight mental-health issues, and they’re not often severe enough to get help at school, but they’re a vulnerable group and they’re falling through the cracks.’’

To get a diagnosis, a person has to show significant brain impairment in at least three of the following areas: executive functioning, memory, reasoning, sensory motor skills, language, attention, adaptive functioning and scholastic functioning.

“A whole lot of children were presenting with real difficulties in life, but they weren’t meeting the rules for help,” says Crawford.

She says FASD should be regarded as a disability, allowing children to access disability services, as many of those affected have impaired social and emotional functioning. The only way they can access services is if they are assessed as “intellectually disabled’’ – with an IQ below 70 – but most have higher IQs. Her other insight was that FASD children often have social and emotional delays that may put them years behind their chronological age.

Since her team began diagnosing the condition, 129 children in Hawke’s Bay have been identified with it.

The Ministry of Health estimates about 30,000 children and young people have FASD, and about 1800 more are born each year. The prevalence in middle-aged or older adults is unknown, but it is thought about 46,000 New Zealanders may be affected. The ministry estimates about 50% of children and young people in state care have FASD. Half of pregnancies are exposed to alcohol, one in 10 at high levels.

“One of the biggest telltale signs is a child’s inability to recognise emotions in someone else. We can’t lose sight of that when we are thinking of neurological problems,’’ says Crawford.

No safe amount

Alcohol is a teratogen – meaning it can cause fetal abnormalities – going straight into the fetus’ blood stream. The developing baby’s central nervous system is sensitive to teratogens throughout gestation.

Today’s public-health message is that there is no safe amount. “FASD is likely to be New Zealand’s leading preventable cause of non-genetic intellectual disability,’’ wrote the Ministry of Health in its 2016-19 FASD action plan. And, last year, the Health Promotion Agency launched “Don’t Know, Don’t Drink’’ and “Pre-Testie Bestie” public-health campaigns, encouraging women to stop drinking alcohol if there is any chance they could be pregnant.

However, there are signs that pregnant women are still drinking, especially during unplanned pregnancies.

If a mother has poor nutrition, or smokes, or the child has a damaging home environment in its early years, the FASD can be worse, says Crawford. “The message that there’s no safe level to drink is because it will be different for every mother and baby. It’s really important that if you become pregnant, just stop drinking.‘’

Christine Rogan, FASD project co-ordinator at Alcohol Healthwatch, has been trying to get services and raise awareness about the disorder for the past two decades. “FASD is hidden in the gaps between services,” she says. Part of the problem is the stigma and the shame of damaging the unborn child. Rogan argues it is time to stop this attitude.

“You hear the stories all the time: ‘Nobody told me …’ Alcohol is so normalised in our society. You really have to have an excuse not to drink, and we have a high rate of unplanned pregnancies, so it’s a calamity.’’

Sad reality

There are small murmurings of change. Children’s Commissioner Andrew Becroft has called for a prevalence study of FASD, and also for children to stay in school rather than be suspended, as happened to Gibbs’ son. Meanwhile, Justice Minister Andrew Little suggested in March that there may be potential for different courts for adults with neurological disabilities – FASD, ADHD, intellectual disability and traumatic brain injury – who may be functioning at a much younger age than their biological age.

From the end of the year, it is expected that every bottle of alcohol sold in New Zealand will have to carry a pregnancy warning. Food Standards Australia New Zealand agreed last year to add labels following public consultation.

That will be almost two decades too late for Rogan, who presented a petition to Parliament in 2000 calling for pregnancy warnings on bottles. Since then, she says, drinking has become even more normalised as alcohol is widely sold in supermarkets and is relatively cheaper than it was 19 years ago.

Rogan debunks the myths she has heard over two decades about drinking while pregnant. “There is the myth that there is a safe amount of alcohol you can drink. You can say there is a low risk, but not that there is no risk. Also, the misconception that you have to be an alcoholic to have a child with FASD. Alcohol doesn’t discriminate, and the sad reality is that it causes birth defects.’’

This article was first published in the June 15, 2019 issue of the New Zealand Listener.