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A Better Start National Science Challenge’s Big Data
theme has developed a method for identifying children and
young people on the autism spectrum/Takiwātanga using
health data within the Integrated Data Infrastructure
(IDI).
The method enables research to better
understand the lives of children and young people in
Aotearoa/New Zealand on the autism spectrum. Researchers can
use this approach to examine changes in service use over
time and variation of life outcomes for people who are on
the autism spectrum, and their families.
While
increasingly associated with strengths such as visual
thinking, logic, and memory, autism can also have a variable
effect on adaptive functioning. Previous studies have found
it may be associated with intellectual disability, estimated
to affect 31 percent of individuals; mental health
conditions, 70 percent of individuals; and other medical
conditions such as epilepsy, constipation, and sleep
problems. International estimates suggest that the
prevalence of autism is on the rise with a recent study from
the USA indicating 1 in 54 children have autism. There is
growing interest in autism research in New Zealand, but a
significant void in quantitative data.
The research
team used diagnostic information from three health data sets
held in the IDI to identify autism among children and young
people (0-24 years of age) in New Zealand. The resulting
case identification method was then applied to the
corresponding estimated resident population in New Zealand
for the 2015/16 year.
This study demonstrates the
potential value and limitations of using IDI data for autism
research. Analysis of data yielded an autism identification
rate of 1 in 102 eight-year olds, meaning it is possible and
understandable that the IDI-based case identification method
undercounts cases of autism among comparable ages by roughly
40 percent. It is reassuring that relative rates across
gender and ethnic groups are consistent with both
international and national estimates. Autism was more common
in males than females and in individuals of New Zealand
European ethnicity than in Māori and Pasifika
populations.
A further application of the method
revealed the complexity of autism with 68% having a
co-occurring mental health or related neurodiverse
condition, including 30% with an intellectual disability,
30% with behaviour issues (e.g. ADHD) and 28% with anxiety
and/or depression.
From a rare diagnosis 30 years ago,
autism has become very prominent. Children and young people
on the autism spectrum are now throughout our schools and
communities. We need data to help understand what and where
gaps in access to services and service use are.
“We
can’t start providing sufficient supports in schools or for
families unless we know what the size and complexity of the
issue is,” says lead researcher Nicholas Bowden. “The
IDI has the potential to be a valuable resource for autism
research and help fill this gap,” he says.
The
publication of this research in the journal Autism:
International Journal of Research and Practice will
provide valuable information for those working in autism
policy, government, schools and the health system to help
provide appropriate support.
“We recognise that New
Zealand needs to do better in the area of understanding
autism,” says Professor Wayne Cutfield, A Better Start
National Science Challenge Director. “The government wants
to do better, however, we need an evidence
base.”
“Autism New Zealand are getting more and
more requests for New Zealand domiciled research into
autism. This work provides a structured approach for
research into autism that is specific to New Zealand that
will allow for more efficient and effective research,”
says Dane Dougan, CEO of Autism New Zealand.
Nicholas
Bowden says: “I was aware of issues of discrimination and
lack of understanding around children and young people on
the autism spectrum, and challenges regarding inclusion and
participation.”
“The hope and expectation was that
the IDI would be a valuable resource for autism research,
which could be used to contribute to a better understanding.
While autism research is still relatively new to me, I feel
privileged to have amazing researchers supporting me, some
of whom have dedicated much of their lives to autism
advocacy and autism research. I’m confident that our
research will make a difference,” he says
A number
of other research projects are underway that use the
developed case identification method. For example, a paper
is currently under review which examines the medication use
of children and young people on the autism spectrum, and how
this differs to those without autism. A further a study is
investigating how education-based supports for those on the
autism spectrum reduce rates of school exclusions,
suspensions, and stand-downs. There is huge potential and a
number of other areas of work are being
discussed.
Read the journal article: https://journals.sagepub.com/doi/full/10.1177/1362361320939329
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