More research has come from a long running project in Queensland that reinforces the high quality of life people with Down syndrome are experiencing and can help block misinformation given to prospective parents.
The Down Syndrome Research Program is in its 40th year. The team at the University of Queensland believe it’s the oldest, most complete study of its kind anywhere in the world.
And it’s often throwing up surprises.
Associate Professor Rhonda Faragher, the director of the research program, says one of the most surprising parts of her recent research into Gen Zs with Down Syndrome was just how technologically adept they were.
“The participants are so tech savvy. They’re right into it,” she told me.
“Our hypothesis is that this is a very socially included generation … they’re around people who engage in social media, who use technology in all sorts of ways. So, for them, it’s natural. It’s a part of how they are engaged in the world.”
This included Alana Pettigrew, one of the research assistants in the project who also has Down Syndrome, who joined Rhonda and I for a zoom interview.
Pettigrew told me about her experience working as a research assistant. After applying via a video, she was one of the four research assistants hired to help the team find and interview gen Zs with Down syndrome.
“I liked to talk with lots of different people in the room,” she says. “I like being myself.”
In particular, she was able to help the team communicate with a person who was less verbal by making two fists and directing the participant to point at either hand.
“I used my hands – one for yes and one for no.”
Down syndrome – also known as trisomy 21 – is a set of characteristics which occurs in people with an extra chromosome 21. Faragher points to the transition in our community about the quality of life people with Down Syndrome are experiencing.
“In the 1960s, for example, when they lived in institutions, there weren’t heart treatments like Alana had and there weren’t antibiotics to help people, but they were also deprived social environments. These children, they died in their teens – that was the life expectancy. Most didn’t talk, it was unheard of that they would read,” she says.
“Now it’s no longer the remarkable few who learn to read, it’s more unlikely that they won’t. We’ve just learned so much more about what we need to provide in the social environment that allows people to thrive.”
Faragher’s recent research has zoomed in on a particular group of people – Gen Z or ‘zoomers’.
The research, which has finished collecting data but has not yet been published in a peer-reviewed paper, interviewed 26 people from around Australia aged between 18 and 30. There were three main research questions: What common aspects typify life for Gen Zs with Down syndrome? What do Gen Zs with Down syndrome value in their lives? What factors affect their quality of life?
“What our data has confirmed is that our Gen Zs are having a really great life. Their quality of life – a life of meaning and purpose – is rich, and they’re really enjoying it,” says Faragher.
Unfortunately, despite the technological and societal advances, Faragher suggests that many people still see those with Down syndrome as having a lesser quality of life.
“There are people who feel pity for people with Down syndrome. They think that they can’t have a full life,” she says.
“I do think that the world is getting to be a better place for people with Down syndrome and we have seen that through our research. There’s still a way to go, of course.
“Advocacy and social inclusion are leading to these improvements.”
“People didn’t like being presumed incompetent. That really riles … there’s a presumption by some in the wider community that people shouldn’t be out without a support worker or family member.”
Faragher uses the example of someone trying to hire an Uber.
One participant communicated exclusively through his smart phone, either typing out messages or showing pictures, highlighting how important technology is for the zoomers in the study.
Despite this technological ability, Faragher told me that getting the new research assistants signed up to the payroll was one of the biggest struggles, because the University’s automated onboarding software was virtually inaccessible.
This research is particularly important due to the increase of prenatal testing and subsequent abortions if a foetus is diagnosed with Down syndrome.
In 2021, Down Syndrome Australia conducted a survey of 320 parents who had a child with Down syndrome. They found that 42 per cent of prospective parents were given misinformation about life with Down syndrome and 49 per cent felt pressure from health care providers to terminate their pregnancy.
Very rarely are new parents given contacts for people with Down syndrome, or organisations that could provide information. Instead, doctors and other health professionals are tasked with providing this in a very short space of time – potentially swaying the parents one way or the other.
“We know that they’re not getting the right information,” Faragher says.
“If doctors have an unconscious bias because they have never met a person with Down Syndrome and their memories are from when they did their training decades ago … parents are going to make a decision that might not be the decision they’d make if you had a view of what adulthood is like for people with Down Syndrome.
“And that’s a life that gives joy and pleasure to people around them.”
Jacinta Bowler is a science journalist at Cosmos. They have a undergraduate degree in genetics and journalism from the University of Queensland and have been published in the Best Australian Science Writing 2022.
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