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Video transcript - Journey to Diagnosis

Sam who cares for Jazpa who has FASD says:

“I’ve actually found that it’s a lonely journey. Because all the times I went to the GP asking for help, not one person could diagnose or even suggest that FASD could be in there.”

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 “permanent brain injury”. I think I cried for two or three days straight. I actually had to go back and asked for everything to be said again because I couldn’t take in anything that was said.”

Amanda who cares for Faith who has FASD says:

“Faith came to us when she was two weeks old and at that point we didn’t know anything about FASD.”

Clinical Psychologist Shelli Hastings says:

“There’s a number of challenging emotions that families need to manage throughout the assessment and diagnostic process. I think it can be quite confronting for the parents sitting and watching the assessment and seeing their child struggle. And I think there’s that anticipation as well. That, in terms of, when we get to the feedback, will they or won’t they say that my child has this diagnosis and what will that mean. So lots of uncertainty I think.“

Amanda says:

“The diagnosis for us was to, one understand why Faith was doing the things that she was doing. To help us respond to her in a different way, uh and to learn about FASD and for Faith as well because she’s aware of her diagnosis it helps her understand why she does things differently to other people as well.

Neil who looks after two children with FASD says:

“Michael came to us at a very young age and we knew straight away that he had FASD. I didn’t know a lot about FASD. I understood what the causes were and we had heard of it.”

Paediatrician Professor Elizabeth Elliot says:

“Families of children with Fetal Alcohol Spectrum Disorders often feel quite isolated. They sometimes feel poorly understood. They often complain that they’ve had difficulty getting a diagnosis, getting anyone to either make a diagnosis or accept that alcohol might be involved in that diagnosis.”

Paediatrician Associate Professor Raewyn Mutch says:

“Once you bring in the idea of FASD that then raises questions around prenatal alcohol use. And so sometimes people are a bit more uncomfortable asking about that.”

Paediatrician Doctor Marcel Zimmet says:

“For some mothers it can be a release to discuss that, and discuss their feeling of guilt and, ah the difficulties they’ve had with their alcohol use. And that can be a positive out of the diagnostic assessment.”

Paediatrician Dr Doug Shelton says:

“Theoretically FASD is one hundred percent preventable, because if there was no alcohol exposure in utero there would be no FASD. But I think that’s an oversimplification of what’s actually a complex picture.”

Sam who cares for Jazpa who has FASD says:

“Once we got the diagnosis and I kind of absorbed all the information, I started doing a lot of research and it made sense but that was just the start of our journey of understanding FASD and everything that comes with it. You can’t just focus on the bad, ah, and of the parts that you hear that are pretty devastating, you’ve got to absorb that and then you’ve got to move forward.”