Evaluation of NZ’s diagnostic process
Awareness is good, but implementation still needs work
Results from Autism CRC’s latest research have led to recommendations for improving best practice in the identification, diagnosis, and ongoing supports for people on the autism spectrum in New Zealand.
The New Zealand Autism Spectrum Disorder Guideline (the Guideline) was first published in 2008, with a second edition released in 2016. Although there is good awareness of the Guideline in New Zealand, the autism community report some recommendations from the Guideline are not well implemented and little research has evaluated implementation of the Guideline.
The Autism CRC collaboration was led by Autism New Zealand, and included researchers from the development of Australia’s first National Guideline for the Assessment and Diagnosis of Autism.
Given current prevalence rates, it’s estimated that approximately 82,000 New Zealanders meet the diagnostic criteria for autism. New Zealand children are not diagnosed until six years of age on average, even though autism can often be reliably diagnosed at a much younger age. Delays in diagnosis lead to many children not receiving support until school age, missing the crucial period for effective early intervention support. In addition, no formal diagnostic pathway in the public system exists for adults.
The study aimed to understand the autism diagnostic process, spanning identification, diagnosis, and ongoing supports, in New Zealand. It also aimed to evaluate implementation of recommendations from the Guideline.
The study surveyed 640 participants, including parents/caregivers of children on the spectrum, autistic adults and clinicians in both private and public settings. The research found that:
- the autism diagnostic pathway varied between children and adults
- children were more likely to receive their diagnosis through a multidisciplinary assessment within the public system and wait longer for their first appointment and diagnostic confirmation than adults.
- parents/caregivers and autistic adults reported that the autism diagnostic pathway is unclear and ongoing supports are lacking or uncoordinated.
- more than half of parents/caregivers and autistic adults were satisfied with the autism diagnostic process overall. However, only about a quarter of participants were satisfied with post-diagnostic supports.
Clinicians indicated good awareness of the Guideline, but implementation of recommendations varied. Results show work is needed to:
- identify autism earlier and increase clarity in the autism diagnostic pathway
- support implementation of recommendations from the Guideline to ensure diagnosis is timely, consistent and accurate
- improve access to high-quality, coordinated and ongoing supports post-diagnosis.
Autism New Zealand is commencing work with the New Zealand Government and community towards these goals.
You can find the results of the research presented in the Final Report, Executive Summary and Visual Snapshot in the Autism CRC Knowledge Centre.