Once a week, the Slate family gathers to play board games at their kitchen table in Melbourne. Five-year-old Carson plays his favourite game Dragomino, flanked by his father James and friends of the family. His mother Cheryl flips her tokens with 12-week-old Jeffrey on her lap.
“It’s a lot of fun, they all try to bring a new game each time,” Cheryl says. “But we’ve banned Monopoly.”
Carson and his father James have autism. Many of the friends who gather around the table each week are neurodivergent. Cheryl, 36 who is neurotypical, says the diagnoses of her partner and son helped bring harmony to how they organised their home.
“We give ourselves grace and leeway on different things, we’ve figured out workarounds for what’s actually going to help our family” she says.
Her firstborn Carson was diagnosed at two-and-a-half, after Cheryl noticed he was developing differently to other kids his age. James, 36, seeing similarities to his own childhood, received a diagnosis soon after.
“Before, we always felt like we weren’t doing enough, that we’re not just good enough, “ Cheryl says.
“Whereas now, we understand. We talk about autism pretty much daily in this household, saying it’s a good thing, like: ‘how cool is our mind to think that way?’”
Once a fortnight, Jodie Smith, a speech pathologist and lecturer at Melbourne’s LaTrobe University, comes to the Slade home with a camera. She sets up in a corner and presses record while Cheryl plays with Jeffrey in front of the lens.
Cheryl holds her 12-week-old son Jeffrey during a CUBS therapy session. Source: Supplied
When playtime’s over, Ms Smith sits down with Cheryl to analyse the footage, and coaches Cheryl on the recorded interactions.
“What we’re looking for is communication cues from the baby. So the babies move their head that way, or the baby is really tense- what might that mean?” Ms Smith says. “That’s what’s called a coaching moment, which is maybe a missed opportunity, or a time when maybe mum and dad could have done something slightly different.”
Cheryl says she’ll pick up things she’d miss before. “When he’s tired, he starts looking away instead of looking at us, starts trying to lean over because he wants to feed and go to sleep, and grunting and groaning, like he’s saying: ‘Stop bugging me!’”
“It’s given us that time to really connect, and it’s helped us to connect Carson with his little brother. Now, he’ll come up to me and say: ‘Jeffrey says he’s hungry,’ or ‘Jeffrey says he’s sleepy.’ It’s helped him feel like a big brother.”
Jeffrey meets his older brother Carson on the day of his birth. Source: Supplied
All participants receive five assessments at key developmental periods, and half the participants receive ten fortnightly therapy sessions - the video playback therapy Cheryl and Jeffrey receive - in the first eight months of development. Researchers from the University of Manchester in the UK helped design the therapy sessions.
“We know the quality of the early environment for children is really, really important for their development,” Ms Smith says. “So the aim of CUB is looking at these families with a higher likelihood of having a baby who might be developing a bit differently, getting in early, and helping parents to set up positive ways of interacting with their children.”
"The video feedback is an objective way for us to look at cause-and-effect between babies and parents, particularly in those early stages where communication is particularly ambiguous," she says.
"We don't want to change parents, we just want to reinforce things they're already doing really, really nicely."
The majority of autism diagnoses occur between the ages of two and six, and support usually comes afterwards.
Professor Andrew Whitehouse, co-leader of the CUB research study, says many parents detect differences in their child much earlier.
“Kids are born with a developmental difference, you can call it neurodivergence. That might be small differences in how they process the world, and it's those interactions with the world that creates neurodivergence more and more from the neurotypical path,” he says.
“Younger children often bounce from health service to health service until they eventually land on a diagnosis, then support is provided from there. But of course, we understand kids develop differently from a very, very early age.”
Professor Andrew Whitehouse says the iBASIS-VIPP therapy is a 'sea-change.' Source: Supplied
The study applied the same video-playback therapy to older children who were already experiencing developmental delays, rather than those with a family history of neurodivergence like in the CUB study.
The children received the therapy between nine and 14 months, then were assessed for clinical autism by independent clinicians at 18 months, two years, and three years of age. Another group of children received no therapy but were assessed at the same time.
Only 6.7 per cent of children who received the treatment met the criteria for clinical autism, compared with about 20 per cent of children who did not receive the therapy - a reduction of two-thirds.
“What we found is that, essentially, if we identify neurodivergence as early as possible in life, we can actually stop that developmental cascade to develop those behaviours,” he says.
“Those kids who received the intervention and didn’t meet the [clinical autism] criteria, they’re still neurodivergent, but their challenges with interacting with the world are mitigated… the end result is less disability.”
Christina Guastalegname, 40, and her child Frankie joined the AICES study in 2016, after he suddenly stopped talking when he was six months old. They were among the group who received the video playback therapy for five months.
Christina Guastalegname and son Frankie underwent the therapy in 2016-17. Source: Supplied
“Pausing was really important, before I’d rush in and do something else if he was losing interest, but after I’d pause and wait for his response,” she says.
“Eye contact, facial expressions, tone of voice, a lot of copying and imitating, and making my response to him timely. I would get a lot more out of him, because we were having a conversation, I guess, in his language.”
Frankie, now six, did end up receiving an autism diagnosis from a psychologist last December, right before starting Prep at school.
“I wasn’t really surprised or anything, but my main concern was getting the support in place with school,” she says.“The therapy opened a new door for us, in terms of understanding each other… and I’ve relayed that information back to his school, to help them know where he’s at.”
"It helped me to identify areas where milestones were not met, and implement strategies, like communication techniques, that were particular to Frankie's needs."
Christina says Frankie has "come such a long way". Source: Supplied
Professor Andrew Whitehouse, who is also Director at Autism Awareness Australia, says it differs from many other interventions and treatments out there by its early focus on the environment of the child.
“It’s about changing the parent to adapt to the child, instead of blaming the kid for not understanding the world and seeking to change them… we’re teaching beautiful, sensitive parenting in how you can make your child feel perceived and understood, which helps kids grow.”
Senior Project Manager for CUB at LaTrobe University, Alex Aulich, says results are still a few years away for their project.
“It is a different clinical trial [to AICES], and we don’t know if the program will have benefits to the child and family,” she says.
“Of course we’re hopeful… This research is really important, and every family who participates is contributing something really valuable to autism research.”
Chery’s eldest son Carson, like Frankie, has just started Prep. He’s doing half-days, and she’s clued up his teachers on the best way to support him.
“He’s running to school, some mornings I don’t even get to say goodbye to him. He absolutely loves his maths… but he says he’s never going to do English again because he already knows how to speak the language,” she says.
“If Jeffrey is autistic, the earlier we can help him means he won’t have to go through any of the trauma of trying to get pushed through as a neurotypical kid without the support.”
