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Family finally gets answers from FASD diagnosis

Queensland grandmother Sharon Wallace said she needs locks on her bedroom door.

That's because her seven-year-old grandson Xavier can be incredibly loving one minute, but destructive the next.

"Xavier loves to have something that smells like me, plays with my ears. And then the other side of Xavier is that he'll put huge holes in the walls at home, he'll hurt his brothers and sisters or me," Ms Wallace said.

"He gets in such high anxiety states of aggression and he won't calm down for ages. He could be fine right now and ten minutes later he's having a big rage and there's no calming him down."

Ms Wallace has to hide knives and hammers from Xavier, because of the damage he can cause at home.

Xavier Wallace as a baby.

It has gotten worse since he wasn't allowed back to school.

"He says it's payback, but usually it's when he's having his meltdown," Ms Wallace said.

"I think he regrets it afterwards but at the time it's his way of getting his anger out.

"It can be very confronting."

Ms Wallace said the episodes happen up to three times a day.

She has been looking after Xavier and his siblings since they were taken away from their mother because of problems with alcohol.

That was one of the reasons why last year she decided to take Xavier to see doctors at the Fetal Alcohol Spectrum Disorders Clinic on the Gold Coast.

She was looking for answers to his wild and uncontrollable behaviour.

"Nothing else we tried has worked," Ms Wallace said.

"A lot of people look at me and say it's the discipline, you're not giving him enough discipline. And you try and it doesn't work. And in the end you think it must be me, what am I doing wrong?"

Australia officially recognises FASD

FASD is an impairment to the brain caused by fetal exposure to alcohol during pregnancy.

There are varying degrees of severity, but it mainly manifests as behavioural problems and learning difficulties.

"Often the diagnosis of FASD shows us that it's not that the child won't behave, or that it's wilful disobedience. It's that they can't, they don't have the capacity to either learn or behave in a manner that is expected of them," said Doug Shelton, the clinical director of Community Child Health in the Gold Coast.

Xavier sits at the table with his iPad

In 2016 Australia published for the first time its own set of diagnostic guidelines for FASD, based on the Canadian model.

Doctor Shelton said the diagnosis involves a child psychologist, speech pathologist and paediatrician taking the child through a complex series of tests that can last up to two days.

"There are a number of different brain domains that we look at in children that potentially have FASD. That would include their intelligence, their language skills, their memory, their attention control, something called their affect, which is related to their mood, " Dr Shelton explained.

"We look at their social skills and we look at something called the executive function, which is their ability to plan ahead and organise their thoughts."

Diagnosis provides understanding

Xavier undertook these tests late last year and doctors confirmed his diagnosis of FASD.

"He's on the severe end of the spectrum, because he has major impairments in at least five separate brain domains. He has major problems with attention, executive function, adaptive skills, affect, regulation," Dr Shelton explained.

Ms Wallace was tearful and emotional when she heard this, but also relieved.

"Anyone that I have been to and any friends say that it must be my environment that he's in, that causing his behaviour and I can't work out what I'm doing wrong," Ms Wallace said.

"If I can't find something to help him, child safety will take him back. He'll end up in a system where no one can understand him."

"I'm glad he got in here, if he hadn't got some kind of help I don't know where he'll end up."

Sharon Wallace with her two grandsons.

Doctors at the clinic said they will inform child safety and Xavier's schools about the diagnosis, so they realise his behaviour is essentially the result of a brain impairment, not his grandmother's care.

"So it's allowing them to understand how his brain works, what the areas of deficit are, and how that plays out on a day-to-day basis in a classroom," said Doctor Judith Warner, a clinical psychologist who assessed Xavier.

"Can we reasonably expect him to be able to screen out a lot of the information from multiple instructions in the classroom and regulate his emotions when there is a lot going on around him? And no would be the answer to that," Dr Warner said.

In addition to getting additional support for Xavier at school, his grandmother will also be taught how to better manage his behaviour.

Part of that involves acting like his 'external brain' and providing more structure, advice and support.

Earlier diagnosis could help incarceration rates

Doctors are pushing for earlier diagnosis and intervention of children with FASD, to help improve their life outcomes.

Doctor Doug Shelton is working with Griffith University to develop diagnostic guidelines that can test children as young as three, instead of the current age limit of seven.

He said children or people with FASD have a much higher risk of not completing their education, falling into lower socioeconomic groups, self medicating with drugs and alcohol and suffering from anxiety or depression.

"That can spiral off into life of crime and … ultimately incarceration. And there is a much higher rate of attempted suicide and successful suicide in adults with FASD," Dr Shelton said.

Dr Shelton said he's been asked by the Queensland Department of Justice to train their psychologists on how to diagnose FASD.

"There are many people in jail that don't have brains that function normally. We know that from overseas research and from research conducted in Western Australia. Some of that abnormal brain function is due to FASD," Dr Shelton said.

"So ultimately the community is paying an enormous amount of money to keep people with FASD in jail, when really it would have cost us much less money to identify them early and provide intervention when they were children."

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