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Video transcript - FASD in Australia

Paediatrician Dr James Fitzpatrick says:

“FASD is everybody’s business.”

Sam who cares for Jazpa who has FASD says:

“I’ve actually found that it’s a lonely journey.“

Paediatrician Dr Doug Shelton says:

“FASD needs to come out of the closet.

FASD is a diffuse brain injury caused by exposure of the unborn baby’s brain to alcohol.”

Dr James Fitzpatrick says:

“FASD occurs in all sectors of our society, and in studies internationally it’s thought that between two and five percent of the general population may be affected by FASD.”

Social Worker Robyn Plowman says:

“It’s probably where ADHD was 20 years ago in Australia. Some scepticism, some oh, is it real?”

Sam says:

“When I got the diagnosis the first thing that I remember hearing was, “a permanent brain injury”, it could not be fixed. I remember hearing that and it’s like my whole world fell apart.”

Paediatrician Professor Elizabeth Elliot says:

"There is no typical child with Fetal Alcohol Spectrum Disorder, but if you ask parents and teachers, perhaps the most common problem is behavioural problems."

Neil who looks after two children with FASD says:

“You know, the fact of the matter is, 80 percent of these children, if they don’t have the supports end up either in an institution, in jail, you know living on the streets, with health issues. They’re just unable to live in the community unsupported and so you’ve got to have that knowledge so you can put the supports in place.”

Amanda who cares for Faith who has FASD says:

“Health professionals, I’ve found don’t always understand what FASD is. It’s very important when you find a therapist, like uh an OT or a speech that they have some awareness or understanding, or be willing to learn. So that the best outcome for your child is achieved.”

Dr Doug Shelton says:

“FASD at this point in time is sometimes a stigmatising diagnosis, and I think the reason for that is because it’s only diagnosed rarely.”

Clinical Psychologist Nadi Fernando says:

“There’s a lot of guilt and shame that can be experienced by a lot parents as well. So it’s really important that as health professionals we have a responsibility to really let those families know how, how much we appreciate how difficult and challenging that process might be.”

Neil says:

“Community attitude needs to change 100 percent. We’ve all, we’ve felt it. The negativity and statements that have been made to us because we have two children with FASD, um at times is just, is just so disheartening and you know they’re obviously not our children so the stigma doesn’t really stick but already we’ve felt it so you can imagine how hard it must be for a parent.”

Dr Doug Shelton says:

“Indeed most of the children that we see the exposure to alcohol was inadvertent because mum didn’t realise she was pregnant, wasn’t planning to get pregnant, and stopped drinking as soon as she found out she was pregnant.”

Amanda says:

“Understand, that that this is a real condition and it is a challenge for parents not to judge the parents on how they are parenting but to support and to learn as much as they can about it to be able to support the parents and the child with FASD.”

Sam says:

“You know at the end of the day they’re still your child. They’re still perfect to you. Ah, they have meltdowns, they have difficulties, they struggle every day, but it doesn’t stop you loving your kids.”

Neil says:

“Our two are the light of life. You know, if they weren’t at the school, the school would be a dull and boring place without our two. They are the centre of attention in the classroom, and not for bad reasons anymore. Because they are happy easy going, um very loveable children and most of these kids are like that, they just need the support and the structure for them to be able to achieve it.”

Dr James Fitzpatrick says:

“The caregivers of Australia are the ones who have led this charge. It’s because carers and advocates have kept their advocacy up for the past 20 years and they haven’t let go, and clinicians and researchers have followed. So we are all in this together and there is great cause for hope.”