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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