Abstract
The diagnostic experiences of autistic adults in New Zealand have not been investigated and little is known globally about autistic adults’ satisfaction with the autism diagnostic process. This study describes the diagnostic experiences of 70 autistic adults living in New Zealand and explores how these experiences are related to satisfaction during three stages of the diagnostic process. The results show that autistic adults were reasonably satisfied with the early query and diagnostic assessment stages, but were dissatisfied with the post-diagnostic support stage, with significant unmet needs. Dissatisfaction during the post-diagnostic support stage was also related to satisfaction during previous stages and poor coordination of supports. Suggestions are made on how to improve the autism diagnostic pathway for autistic adults in New Zealand.
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Participant approval was not obtained to store data in a public repository during the consent process.
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Acknowledgments
We would like to thank the autistic adults who gave their time to participate in this study, along with Dane Dougan, Kirsty Herapath, Amanda August and the Autism New Zealand team who contributed to the study planning and administration. In addition, we would like to express our appreciation to the autistic adults, parents of children on the autism spectrum and professionals who provided feedback on the draft survey and the groups who promoted this survey within the autism community.
All authors contributed to the study conception or design and/or the acquisition, analysis, or interpretation of data. The first draft of the manuscript was written by Dr Kiah Evans and all authors commented on this and subsequent versions of the manuscript. All authors read and approved the final manuscript.
Funding
The authors acknowledge the financial support of the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government’s Cooperative Research Centres Program (1.058RU). Professor Andrew Whitehouse is supported by an Investigator Grant from the National Health and Medical research Council (APP1173896).
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All procedures involving human participants were in accordance with the ethical standards of the institutional and national research committees and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Ethical approval was granted by the New Zealand Ethics Committee (2018_28) and the University of Western Australia’s Human Research Ethics Office (RA/4/20/5210). A statement was included that undertaking the survey was an indication of informed consent and participants completed the survey anonymously.
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Evans, K., van der Meer, L., Eggleston, M.J.F. et al. A Survey of Autistic Adults from New Zealand on the Autism Diagnostic Process During Adolescence and Adulthood. J Autism Dev Disord 52, 771–781 (2022). https://doi.org/10.1007/s10803-021-04983-0
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DOI: https://doi.org/10.1007/s10803-021-04983-0