Autism spectrum disorder/Takiwātanga: An Integrated Data Infrastructure-based approach to autism spectrum disorder research in New Zealand.
Nicholas Bowden, Hiran Thabrew, Jesse Kokaua and 6 others
PMID 32677449WHAT IT FOUND
New Zealand linked data identified 9555 children and young people with autism.
The identified group had much higher co-occurring intellectual disability and disruptive behaviours than non-autistic children, but the method likely undercounts cases.
Key findings
019555 unique children and young people aged 0-24 were identified with ASD in linked New Zealand administrative data from 2010/2011 to 2015/2016, but the authors state the method likely undercounts cases by roughly 40%.
02In 2015/2016, males were identified at nearly four times the rate of females; the overall rate was 57 per 10,000, with male and female rates of 88 and 24 per 10,000, and eight-year-olds 98 per 10,000.
03Almost 70% of the ASD group had at least one co-occurring condition, six times the non-ASD rate; intellectual disability was 30% and 62 times more likely, and disruptive behaviours were 30% and 14 times more likely.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The case identification method was not formally validated, so the true number of people with autism and the accuracy of individual diagnoses are uncertain. The authors state the method likely undercounts cases by roughly 40%, and the undercount appears to increase with age. The data do not include primary care, private care or paediatric service records, so people diagnosed or managed outside the linked public systems may be missed. Most cases were identified through disability support assessments, which may skew the group toward more severe autism and more co-occurring conditions. The study does not estimate true prevalence and does not test whether any treatment changes outcomes. Lower identification rates in Māori and Pasifika groups may reflect access, cultural safety and service pathway differences rather than true lower autism rates.
Declared interests
The research was funded by the New Zealand Ministry of Business, Innovation and Employment as part of A Better Start National Science Challenge.
The easy way to misread this
Do not read the 57 per 10,000 identification rate as the true prevalence of autism in New Zealand. The authors state the method does not aim to estimate prevalence and likely undercounts cases by roughly 40%.