You are not alone. This is the message from Queensland Mental Health Commissioner Ivan Frkovic as families around the world observe fetal alcohol spectrum disorder (FASD) awareness day on 9 September.
Mr Frkovic has joined with Queensland FASD Support Group founder Sam Pinnell to highlight the disorder, the need for prevention, and the support available for those living with FASD and their families.
“Families living with fetal alcohol spectrum disorder or FASD should know that they are not alone and that, with the right support and assistance, good outcomes can be achieved,” Mr Frkovic said.
“Many people feel alone and stigmatised with a diagnosis of FASD, and days like today can help extinguish that stigma and promote understanding.”
FASD is a term used to describe the range of neurodevelopmental impairments that result from prenatal alcohol exposure.
Ms Pinnell started the Queensland support group in 2014, after her now 13-year-old nephew, who she has raised as her son since infancy, was diagnosed with FASD.
“Just after his diagnosis, I felt so alone,” she said.
“I craved someone who understood to talk with, but there was no-one.”
She started the support group, which now has almost 1000 members, to ensure no other parent experienced such loneliness.
The motto, she says, is “no blame, no shame” and no judging of the biological mothers.
“I can tell you from experience that FASD is a very, very lonely journey. We are judged a lot,” Ms Pinnell said.
This year her 38-year-old biological son was also diagnosed with FASD.
“I just want people to understand that if you are planning on becoming pregnant, don’t drink.
“If you are already pregnant, don’t drink. “
“There is no safe time in a pregnancy to drink alcohol.”
Mr Frkovic said it was important to understand that FASD was not limited to one group or place.
“It can be found in all parts of society where alcohol is consumed. And it is a social issue, not just a medical condition,” he said.
“We also know there is more we can do for improve early detection, support and management for people living with FASD and their families.
“This includes ensuring health and community service workers have the knowledge and confidence to diagnose and support people with FASD and their families and carers.
“Early diagnosis and recognition, along with therapy and treatment, can help reduce adverse outcomes.”
The National Fetal Alcohol Spectrum Disorder (FASD) Strategic Action Plan 2018-2028 states there is no safe level of prenatal alcohol exposure or exposure to alcohol while breastfeeding.
In July this year the Australia and New Zealand Ministerial Forum on Food Regulation resolved that mandatory labelling warning of the danger of consuming alcohol during pregnancy should be phased in within three years.
QMHC 0477 385 121, media@qmhc,qld.gov.au
Queensland FASD Support Group, Sam Pinnell, firstname.lastname@example.org