Young adults living with Down syndrome have high aspirations and a great zest for life according to an Australian-first study by University of Queensland researchers.
Four research assistants, all with Down syndrome, were employed by UQ to conduct interviews and focus groups around the country.
The study found that rather than a poor quality of life, Gen Z respondents had big hopes and dreams for jobs and hobbies, as well as joy and satisfaction in their relationships with family and friends.
Study leader Associate Professor Rhonda Faragher said there was a sense that new technologies, inclusive schooling and community engagement would have had an impact on the experiences of the new generation of young adults. “They were invaluable because they helped us see things in a different way, like choosing words and pictures to make the information more easily understood by the study participants,” she said.
The team interviewed 26 people aged between 18 to 30, to gather data intended to inform national and international policy and practice.
Families are routinely given false and outdated information about Down syndrome, Faragher said, and this has implications for decisions parents are asked to make in a range of contexts like prenatal testing, education and health care.
Gen Zs were engaged with technology in quite clever ways, even people who had limited communication were using their devices to find things that interested them online, as well as text and FaceTime, Faragher said.
The study also found the participants were highly aware of their limitations and disliked being treated differently.
Young people with Down syndrome expect to be treated with respect and dignity, but the study findings suggest low expectations and perceptions of incompetence persist. “One participant said police officers approached her after a sporting event to ask if she was OK when she was just booking herself an Uber. Although the police had good intentions, they could have simply asked if she’d enjoyed the match to find out if she was OK without singling her out,” she said.
Go to: Stepping out in the world: the new adulthood for Gen Zs with Down syndrome.
Image: Research assistants: Alana Pettigrew, Rebecca Flanagan, Mia Johnston and Michael Cox