Foetal alcohol spectrum disorder has been in the spotlight, but what are its day-to-day effects on families, and what changes could be made to how they are supported? Otago Daily Times reporter Elena McPhee spoke to an expert from the University of Otago and two parents who have struggled to get a diagnosis for their children.
Fears for the future have led one mother of a child with foetal alcohol spectrum disorder (FASD) to register her 11-year-old son with police.
Dunedin mother Sonia* said she had tried to get her adopted son Jason* diagnosed since he was 5 years old, and the process had been a nightmare.
After years of working with a paediatrician at Dunedin Hospital, Jason was referred to and diagnosed through reThink Children's Therapy last year, at a cost of more than $7000.
Outwardly Jason looked like a normal boy, but with a comorbid diagnosis of ADHD, he was "like the Energiser Bunny on full speed", his mother said.
Adopted when he was 15 months old, Jason came from a family where drug use and alcohol abuse were the norm, and his FASD symptoms came as no surprise.
"When I got home, I could tell that there was something not right," his mother said.
Despite not meaning to be naughty, the now-11-year-old had already been expelled from one school.
She said a noticeable feature of the disorder was distorted thinking.
"They are very honest with you, but their truth may not be the actual truth."
Jason could not take part in sports, because he would not understand the rules; however, he would initially be able to convince people he did.
At school Jason was supported by a full-time teacher aide, a private provider topping up the Ongoing Resourcing Scheme funding he received for 15 hours a week.
Though it was a relief to have a diagnosis, as he headed into his teenage years, she viewed the future with trepidation.
Her fears he might get in trouble with the law as a teenager prompted her to register him with the police National Intelligence Application System - so if he was ever arrested police would be aware of his disability and would hopefully handle the situation appropriately.
Brockville mother-of-three Karen* said she had also been told it was likely her daughter had the condition, and had been waiting for a diagnosis for the past four years.
The cost of getting the diagnosis done privately had been too high, and the family was working with Dunedin Hospital's paediatric service to support her daughter, she said.
Karen said she did not realise she was pregnant until five months, and both drank alcohol and took drugs during her pregnancy.
It was the small things that alerted her to the fact something was wrong with her daughter, who was now 7 years old.
"She was very clingy and was having extremely violent and aggressive moments. She has trouble regulating her emotions, issues with concentration."
Despite her difficulties she described herself as a "proud mum".
"I think there are a lot of people out there who are trying to deal with the stigma," she said.
"I have had some awfully hurtful things said about me and my daughter."
* Not their real names