What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs

Abstract Introduction The age of diagnosis is crucial for optimal health outcomes; however, some individuals with Autism Spectrum Disorder (ASD) may not be diagnosed until adulthood. Limited information is available about the lived experience of receiving a diagnosis during adulthood. Thus, we aimed...

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Main Authors: Parisa Ghanouni, Liam Seaker
Format: Article
Language:English
Published: BMC 2023-06-01
Series:International Journal of Mental Health Systems
Subjects:
Online Access:https://doi.org/10.1186/s13033-023-00587-6
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author Parisa Ghanouni
Liam Seaker
author_facet Parisa Ghanouni
Liam Seaker
author_sort Parisa Ghanouni
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description Abstract Introduction The age of diagnosis is crucial for optimal health outcomes; however, some individuals with Autism Spectrum Disorder (ASD) may not be diagnosed until adulthood. Limited information is available about the lived experience of receiving a diagnosis during adulthood. Thus, we aimed to investigate stakeholders’ experiences about the ASD diagnosis during adulthood. Method We interviewed 18 individuals including 13 adults with ASD who had received a late diagnosis during adulthood and 5 parents of individuals with ASD from various Canadian provinces. Results Using a thematic analysis, three main themes emerged: (a) noticing differences and similarities, (b) hindering elements to diagnosis, and (c) emotional response to diagnostic odyssey. Conclusion This study adds to the literature about experiences of receiving ASD diagnosis in adulthood. Given the impact of diagnosis on individuals, it is important to minimize the barriers to ensure individuals who require ASD-related supports can access them in a timely and effective manner. This study highlights the importance of receiving an ASD diagnosis and facilitates positive health outcomes. The findings from the current study can be used to guide adult diagnostic processes and practices to help make ASD diagnosis more accessible.
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spelling doaj.art-e2f4c07dc48f4630a48955bfba64e0022023-06-11T11:06:04ZengBMCInternational Journal of Mental Health Systems1752-44582023-06-0117111010.1186/s13033-023-00587-6What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputsParisa Ghanouni0Liam Seaker1Department of Occupational Therapy, Dalhousie UniversityDepartment of Occupational Therapy, Dalhousie UniversityAbstract Introduction The age of diagnosis is crucial for optimal health outcomes; however, some individuals with Autism Spectrum Disorder (ASD) may not be diagnosed until adulthood. Limited information is available about the lived experience of receiving a diagnosis during adulthood. Thus, we aimed to investigate stakeholders’ experiences about the ASD diagnosis during adulthood. Method We interviewed 18 individuals including 13 adults with ASD who had received a late diagnosis during adulthood and 5 parents of individuals with ASD from various Canadian provinces. Results Using a thematic analysis, three main themes emerged: (a) noticing differences and similarities, (b) hindering elements to diagnosis, and (c) emotional response to diagnostic odyssey. Conclusion This study adds to the literature about experiences of receiving ASD diagnosis in adulthood. Given the impact of diagnosis on individuals, it is important to minimize the barriers to ensure individuals who require ASD-related supports can access them in a timely and effective manner. This study highlights the importance of receiving an ASD diagnosis and facilitates positive health outcomes. The findings from the current study can be used to guide adult diagnostic processes and practices to help make ASD diagnosis more accessible.https://doi.org/10.1186/s13033-023-00587-6ASDLate diagnosisAdulthoodExperiences
spellingShingle Parisa Ghanouni
Liam Seaker
What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs
International Journal of Mental Health Systems
ASD
Late diagnosis
Adulthood
Experiences
title What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs
title_full What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs
title_fullStr What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs
title_full_unstemmed What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs
title_short What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs
title_sort what does receiving autism diagnosis in adulthood look like stakeholders experiences and inputs
topic ASD
Late diagnosis
Adulthood
Experiences
url https://doi.org/10.1186/s13033-023-00587-6
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