Big Data Themes Early Challenges National Science has developed a method to identify children and adolescents in the autism / Takiwātanga spectrum using health data in the Integrated Data Infrastructure (IDI).
This method allows research to better understand the lives of children and adolescents in Aotearoa / New Zealand on the autism spectrum. Researchers can use this approach to examine changes in service use over time and variations in life outcomes for people in the autism spectrum, and their families.
While increasingly associated with forces such as visual thinking, logic, and memory, autism can also have variable effects on adaptive functions. Previous studies have found it might be related to intellectual disability, estimated to affect 31 percent of individuals; mental health condition, 70 percent of individuals; and other medical conditions such as epilepsy, constipation, and sleep problems. International estimates show that the prevalence of autism is on the rise with recent research from the United States which shows 1 in 54 children have autism. There is growing interest in autism research in New Zealand, but a significant vacuum in quantitative data.
The research team used diagnostic information from three health data sets held at IDI to identify autism among children and adolescents (aged 0-24 years) in New Zealand. The resulting case identification method was then applied to the corresponding population estimates in New Zealand for 2015/16.
This study shows the potential value and limitations of using IDI data for autism research. Data analysis yielded an autism identification rate of 1 in 102 eight-year-old children, which means it is possible and understandable that IDI-based case identification methods reduce the number of autism cases among comparable ages by around 40 percent. It is very convincing that the relative levels of cross-gender and ethnic groups are consistent with international and national estimates. Autism is more common in men than women and in ethnic New Zealand European individuals than in the population of Māori and Pasifika.
Further application of this method reveals the complexity of autism with 68% having co-occurring mental health or neurodiverse related conditions, including 30% with intellectual disabilities, 30% with behavioral problems (eg ADHD) and 28% with anxiety and / or depression.
From a rare diagnosis 30 years ago, autism became very prominent. Children and young people on the autism spectrum now exist throughout our schools and communities. We need data to help understand what and where are gaps in access to services and use of services.
“We cannot begin to provide adequate support at school or family unless we know the size and complexity of this problem,” said lead researcher Nicholas Bowden. “IDI has the potential to become a valuable resource for autism research and help fill this gap,” he said.
Publication of this research in the journal Autism: International Journal of Research and Practice will provide valuable information for those working in autism, government, school and health systems policies to help provide appropriate support.
“We recognize that New Zealand needs to do better in the field of understanding autism,” said Professor Wayne Cutfield, Director of the Better National Science Challenge. “The government wants to do better, however, we need an evidence base.”
“New Zealand Autism is increasingly in demand for New Zealand domiciled in autism research. This work provides a structured approach to autism research specifically for New Zealand that enables more efficient and effective research, “said Dane Dougan, CEO of Autism New Zealand.
Nicholas Bowden said: “I am aware of the problem of discrimination and lack of understanding of children and adolescents regarding the spectrum of autism, and the challenges associated with inclusion and participation.”
“Hopes and hopes are that IDI will become a valuable resource for autism research, which can be used to contribute to better understanding. While autism research is still relatively new to me, I am honored to have extraordinary researchers who support me, some of whom have devoted much of their lives to advocating autism and autism research. I am sure that our research will make a difference, “he said
A number of other research projects are ongoing that use the case identification method developed. For example, a paper is currently being reviewed that examines the use of children’s and adolescent drugs on the autism spectrum, and how this differs from those who are not autistic. A further study is investigating how education-based support for those in the autism spectrum reduces school exclusion, suspension and stand-down rates. There is great potential and a number of other occupations are being discussed.
Read journal articles: https://journals.sagepub.com/doi/full/10.1177/1362361320939329
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