“I had battled for years to try and find someone who could understand what was going wrong,” Sam Pinnell told ABC News AM in Australia about her family’s struggle to get a diagnosis for their youngest child.
“The waiting list is so long, it’s so hard to get your child diagnosed,” she said.
Diagnosing brain impairments caused by alcohol consumption during pregnancy remains a huge challenge in Australia, but new eye-tracking technology could help change that and bring relief to those looking for answers.
Fetal alcohol spectrum disorder, or FASD, is estimated to affect up to 5 per cent of Australians, but it often goes undetected. The facts about FASD
The eye-tracking screening tool, which has already proved successful in research trials funded by Kids Brain Health Network here in Canada, is now to be trialled in Australia. Interim Chief Scientific Officer Dr. James Reynolds is providing Telethon with the eye tracker technology, and is an active collaborator in the project. In addition to supporting the Australian project by providing equipment, Kids Brain Health is also providing data analysis.
Diagnosis: simpler, faster, cheaper
Sam Pinnell, whose youngest child has been diagnosed with the syndrome, knows all too well how arduous it can be to find doctors specialising in fetal alcohol spectrum disorder, or FASD.
“The waiting list is so long, it’s so hard to get your child diagnosed,”
“I had battled for years to try and find someone who could understand what was going wrong.
“It was really frustrating and it was also really upsetting, because I was feeling like a failure as a parent,” she told AM.
That’s why she was relieved when her youngest child was diagnosed at the age of seven with the brain impairment.
“You know — okay, there is a problem, he’s not naughty; now I know what’s wrong,” Ms Pinnell said.
The eye-tracking screening tool could ensure earlier, simpler and cheaper diagnosis for many more children.
It works by recording the speed and accuracy of a child’s eyes as it follows images or dots on a screen.
“That gives an indication of their ability to change where they’re looking, and for their brain to send that message,” explained Dr Roslyn Giglia, the team leader of the FASD research group at the Telethon Kids Institute, which is preparing to trial the tool in Australia.
“And that’s where we see differences between children in the normal range and children who are not in the normal range.”
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In the KBHN trial, spearheaded by Dr. Reynolds, the tool distinguished between children who had FASD, ADHD or those without those impairments, with about 80 per cent accuracy. The Network’s involvement in both studies “will allow us to directly compare the Australian data with our Canadian data, since the information is being collected using the same equipment and software for analysis,” he said.
“The clarity and the ease with which [signs indicating FASD] can be picked up means that it’s very quick,” Dr Giglia said. “And it may be something that’s missed normally, but with this tool, because of the complexity of it, it doesn’t miss it and then the children can easily be referred for further investigation.”
Even with the tool, a series of more complex tests is needed to confirm FASD — a diagnostic process which is still relatively new in Australia.
Dr Doug Shelton is one of only a handful of diagnosing paediatricians.
He says current diagnostic systems are very expensive, time-consuming, and not reliable.
“The great utility of this is potentially its portability,” he said.
“It could potentially be widely available, and that’s really important in areas that don’t have access to child development services.”
Dr Shelton says the eye-tracking screening tool could help a child with FASD get access to treatment and intervention strategies far earlier in life, which he says means a better education, job prospects and overall mental health.
For mother Sam Pinnell, that is priceless.
“You need to get plans into place, and the longer they leave it to find what’s wrong with these children, the harder it is to get support for them.”
The original version of this news article appeared on ABC News Austrialia’s AM program webpage August 7, 2018 http://www.abc.net.au/news/2018-08-08/eye-tracking-technology-could-improve-fasd-diagnosis/10089048