intellectual disability
down syndrome study hits 40
A
4o-year longitudinal
study on Australian
children with Down
syndrome has been recognised
with a major award from Down
Syndrome International.
Project manager Janette Lloyd
studies of the development of the
said about 217 individuals and their longitudinal cohort debunked this
families had been directly involved in myth, demonstrating that while the
the study, comprised of three main rate of development was slower,
cohorts - children born from 1973 development did still continue.
to 1978, 1979 to 1982 and the third International data is now suggesting
being a cross-section of the families a plateau at 18 years.”
study, which began with infants with from the first two ranges.
Down syndrome in the 1970s, has unearthed several key findings on many of the families involved, but recently won an Australian Research
literacy, motor development and obviously there has been a natural Council grant to examine post-school
sibling and family life. attrition because of death or where options and lifestyle choices for
families have relocated interstate or young adults with Down syndrome
Jobling said that in 2018 the program overseas,” Ms Lloyd said. and other intellectual disabilities.
would celebrate its significant contribution to research into Down undertaking a research project of of the study have changed over the
syndrome. adults aged between 35 and 40 and significant time invested.
we’ve been overwhelmed with the
response from families.” – the children are now adults and
The University of Queensland
Former program director Dr Anne
“The study provides unique and
important insights into the health
42
“We still have contact with
“At the moment we are
Janette said the study would
continue, and researchers had
Janette said that some aspects
“The dynamics have changed
and development of those with Down syndrome as well as information began in the 1970s it coincided significant impacts in many ways,
about family functioning,” Dr Jobling with a period where routine which is becoming evident in our
said. institutionalisation of babies was current data collection with the 35 to
“It has collected data about
Janette said that when the study
the parents are older - this all has
being discontinued, with this being 40 year olds.”
cognitive development, motor the first generation of people living
development, temperament and with Down syndrome to be cared for syndrome International was less
family functioning, including the by their families. about the achievements of the
impact on parents and siblings.” researchers, Janette said, and more
effectiveness of early intervention, about recognising the involvement of
also successful in proving against and the interactions of mothers with the individuals and families over so
prejudices previously assumed of their babies, capturing the love and many years.
people with Down syndrome. mutual benefit a child with Down
syndrome brings to a family. families for their contributions over
plateaued in the teenage years but such a long period of time.
our research proved it didn’t,” Dr being changed by this resear ch that
Jobling said. added evidence that ‘putting the said to me ‘I think as a parent you
child in a home and moving on’ was need that extra motivation and it
syndrome require continuing not best for the family, the child or was important to me to learn what
education after they leave school indeed society. we can do for them (people with
to support inclusion in their Down syndrome) in school and the
communities, and particularly with believed that cognitive development community to help them develop
access to paid work.” plateaued from age 12 but careful their future careers’.”
Dr Jobling said the study was
“People once thought learning
“Young adults with Down
intellectual disability
“Earlier studies investigated the
“Attitudes were changing and
“Prior to this research, it was
The recognition from Down
“It provides recognition to the
“A parent involved in the project
linkonline.com.au