A foster parent of a child with fetal alcohol spectrum disorder (FASD) is speaking out about the struggles many families face getting support and a diagnosis for the relatively common, yet often misunderstood condition.
FASD is a permanent brain injury estimated to affect 3 to 5 percent of New Zealand's population or 3000 babies annually. It is caused by drinking any amount of alcohol during pregnancy.
Karen Irving is foster mum to Olivia, 20, who has FASD. She's been living with Irving and her husband for just over 10 years and has been diagnosed with FASD for much of that time.
Irving said Olivia already had three other diagnoses when she first arrived at their home. But after meeting her, she knew these weren't quite right.
"Olivia was very volatile. She used to run away. At 10 years old she was running away," Irving told Newshub.
"We live right out in the back of nowhere, we live 17 kilometres from the nearest shops, and she would walk and then try and jump out in front of cars to get them to stop and pick her up and take her places."
Children with FASD often present like they have behaviour issues and are labelled as "naughty" by people who don't know much about the condition.
"That's what FASD is, they don't get boundaries, they're like a four-year-old. 'Oh, I'm hungry, I'll just open this and eat this'. And everyone just goes, 'Naughty, naughty', but they're actually the opposite of naughty, they just have no processing skills like other kids," Irving said.
"We say if they're 10 [years old], their mental age is five, and they're a five-year-old with brain damage, so they're still a five-year-old that struggles."
Irving explained children with FASD present differently than other children she has fostered because they can be very immature and violent.
But with support and an early diagnosis - preferably while they're at primary school - they can succeed, she said.
"[Olivia] actually stayed all the way through school, which is unheard of… I don't know any other child with FASD that has gone past 15 at high school.
"Because she was diagnosed, she had all the support put in place when she was young before she went to high school. We slowly transitioned her, and she was attached to a unit, which they all should be."
Irving is telling her family's story as September 9 marks FASD International Day of Awareness 2022. The day is used to remind people of the damage drinking while pregnant can cause.
Even though there is no known safe amount or time to drink alcohol while pregnant, the Growing Up In NZ study found 71 percent of people drank alcohol before they knew they were pregnant and 13 percent continued to drink after the first trimester.
According to the FASD Care Action Network (FASD-CAN), many people across most demographics think drinking moderate amounts of alcohol at various stages of pregnancy is okay.
FASD is the greatest contributor to neuro-disability in Aotearoa and is more common than autism, Down syndrome, and cerebral palsy put together. People with FASD have lifelong physical, behavioural, and learning difficulties which affect their interactions with education, health, and justice settings.
FASD-CAN said without support, their entire lives can be extremely challenging for them and their whānau, and can also have a huge impact on society.
With support, people with FASD can live fulfilling lives
Irving said while FASD is with a person for life if they get the right support they can live happy, engaged lives.
Olivia works three hours a day assisting in a school lunchroom. Irving said the 20-year-old loves her job and wants to work, and is grateful she's supported while she's there.
But getting this support can be incredibly difficult.
"If I didn't work in schools, I wouldn't know I could ask for these things, and other foster parents don't know that," she said.
"If you have all the support in place, they can thrive and they can succeed, but it's hard work getting those supports, it's the hardest thing to do for any parent.
"And to get them diagnosed before they're 10 because you have to start putting things in place at primary school age, because often by high school they already hate school and it's a nightmare trying to get them there."
Irving said she's grateful her family is on the more-supported end of the scale with Olivia's diagnosis, but feels many parents with children who have FASD receive little to no help.
"It's the one thing in general as a country we're doing wrong, because it's such a high percentage of children that need more support than they're getting," she said.
"These kids can succeed, but they genuinely need to be supported and they need to be diagnosed and we need to start doing something about that."
While getting professional support is difficult, she said it is made frustratingly worse by the lack of public awareness of the condition, even among some in the medical community.
"I took one of my kids to the doctors the other day… and I said, 'You'll have to explain it to her because she's got FASD', and he said, 'Oh, what's that'. That's a medical professional," she said.
"It's embarrassing that everybody doesn't know what it is because it is genuine brain damage. If they put their heads in a scan, they would see the brain damage. It's not a fake thing, it's not behavioural-based, nothing like that, it is brain damage."
Minister of Disabilities Poto Williams said the Government knows there is more work to do to support people and whānau affected by FASD.
"There are several portfolios with responsibilities to respond to the needs of people with FASD. Whaikaha's [the Ministry of Disabled People] current focus is on improving Child Development Services (CDS) and access to early intervention services that it supports, including for those with neurodevelopmental disabilities due to fetal alcohol exposure," Williams told Newshub.
In Budget 2019, she said the Government funded $35 million over four years to expand CDS, develop a national operating model, and increase front-line staffing capacity. So far, 70 new staff have been employed across the country, allowing about 1150 additional children to access these services each year. Some of these children have or are suspected to have FASD.
The Ministry of Health has also commissioned the development of New Zealand FASD diagnostic guidelines that will help clinicians with diagnosis.
Williams acknowledged for children with neurodevelopmental disorders, access to developmentally appropriate early interventions can mean better health and well-being outcomes for them and their whānau.
"The support and services a person with FASD and their families may need varies depending on the impact of the disorder on their functioning and behaviour, their life stage and family circumstances," she said.
Williams added support and services are currently provided across health, disability, education, and social services.
Irving said it's important FASD is recognised and acknowledged so children are supported, otherwise they end up "on the streets or in drug programmes or in prison".
"The problem is they can have addictive personalities as well, so it's very easy to get onto drugs, very easy to get into being drunks and alcoholics because they have such high anxiety," she said.
"Most kids with some sort of brain damage have anxiety, and they have such high anxiety that marijuana or alcohol takes the edge off."
