“Some­times pae­di­a­tri­cians, doc­tors, GPs or oth­ers may say ​‘you don’t want to put a label on that child’, but I think it’s detri­men­tal not to seek sup­port for that child as they’re grow­ing up,” Robyn Smith says.

“I’ve spo­ken to a lot of adults who have FASD and they’ve had a huge amount of relief out of get­ting a diag­no­sis… They tell us that as a child grow­ing up they felt like they were ​‘dumb’ and ​‘stu­pid’ and they gave this label to them­selves. There­fore, it is so impor­tant for them to realise their brains think dif­fer­ent­ly to oth­er peo­ple, and they need sup­port with tasks.

“As a mat­ter of fact, indi­vid­u­als with FASD, some of them have a nor­mal range IQ,” Ms Smith adds.

“Alco­hol is the only sub­stance that caus­es three par­tic­u­lar facial fea­tures, called sen­tinel facial fea­tures” Ms Smith says. ​“The three fea­tures are small eyes (specif­i­cal­ly, short palpe­bral fis­sure length), a smooth philtrum, and a very thin top upper lip.

“The facial fea­tures are only formed on four days of the preg­nan­cy, which is day 17 to day 20. If there’s no alco­hol con­sumed in these four days, then there’s no facial fea­tures, which means that less than 20 per cent of indi­vid­u­als with FASD have facial fea­tures. It is often referred to as an invis­i­ble dis­abil­i­ty for this reason.”

Ms Smith says the con­fu­sion is part­ly caused by changes to diag­no­sis in 2016. The three or four dif­fer­ent diag­noses that used to exist have now been sim­pli­fied to FASD with three sen­tinel facial fea­tures and FASD with less than three sen­tinel facial fea­tures – but she stress­es that despite the reduc­tion, there is increased recog­ni­tion of the disorder’s diversity.

“The oper­a­tive word is spec­trum,” she says, ​“because there’s no two the same; because peo­ple liv­ing with FASD can be polar oppo­sites, actually.”

“We have had peo­ple say, ​‘my moth­er drank when she was preg­nant with me and I’m fine’,” Ms Smith says.

“That could be a debat­able fact. You might be. But you nev­er know what your full poten­tial was. Maybe if your moth­er hadn’t con­sumed a few of those alco­holic bev­er­ages… we don’t know. There is no known safe lim­it for consumption.

“Not every alco­hol-exposed preg­nan­cy results in FASD. It is one out of 13 that results in FASD… Do you want that one to be your baby? Do you want to take that risk? It’s like play­ing Russ­ian Roulette.

“A recent study found that a woman had one alco­holic drink each night over her preg­nan­cy and she had twins. When they were born, one twin had FASD, the oth­er didn’t. It’s the epi­ge­net­ics of the child and the susceptibility.

“This is why NOFASD sup­ports the Aus­tralian Nation­al Health and Med­ical Research Coun­cil (NHM­RC) guide­lines which advise that no alco­hol should be con­sumed dur­ing any stage of a pregnancy.

“This includes the time before a preg­nan­cy is iden­ti­fied and until breast-feed­ing is discontinued.”

“It is not a low socio-eco­nom­ic issue or an Indige­nous prob­lem,” Ms Smith says. ​“Alco­hol is part of the Aus­tralian cul­ture. It’s noth­ing to come home from work and to have a glass of wine while you’re cook­ing tea, and anoth­er glass after when you’re eat­ing. We use it to cel­e­brate, to com­mis­er­ate, to have a good time. It is so com­mon­ly used in every walk of life.”

On the top­ic of whether it is more preva­lent in rur­al or remote set­tings, Ms Smith says ​“It’s very much a pos­si­bil­i­ty, but there hasn’t been any study on that.”

She points out that only two stud­ies have been done on preva­lence in Aus­tralia, one in Banksia Hill Deten­tion Cen­tre, one in Fitzroy Crossing.

“There was a Sen­ate Inquiry into FASD [in 2020],” she adds. ​“One of the out­comes of that is that hope­ful­ly we will have a main­stream preva­lence study here, rather than a study of a spe­cial pop­u­la­tion group like young peo­ple in detention”.

Even now, though, stud­ies in com­pa­ra­ble juris­dic­tions like Cana­da and alco­hol con­sump­tion sta­tis­tics in Aus­tralia sug­gest the nation­al rate is high.

“There was a preva­lence study done in Cana­da, in 2018, which found that four per cent of the pop­u­la­tion there had FASD,” she says. ​“When you com­pare the sta­tis­tics for that same year of how much alco­hol was con­sumed, Australia’s con­sump­tion was much higher.

“With those results, you can esti­mate that at least 2 to 5 per cent of the Aus­tralian pop­u­la­tion would be liv­ing with FASD. This means that there’s more peo­ple affect­ed by FASD than by autism, spina bifi­da, cere­bral pal­sy, Down syn­drome and SIDS combined.”