ArticleAutism in adulthood2020
"The Single Most Important Thing That Has Happened to Me in My Life": Development of the Impact of Diagnosis Scale-Preliminary Revision.
Article in Autism in adulthood, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
15 citing papers in PubMed, 30 citations in OpenAlex.
- Experiences of Suicide Prevention Interventions and Supports for Autistic Adults: Perspectives of Autistic Adults, Family Members and Clinicians.Journal of autism and developmental disorders · 2026Article
- What Are the Lived Experiences of Strengths in Autistic Individuals? A Systematic Review and Thematic Synthesis.Autism in adulthood · 2026Article
- The Codesign and Initial Evaluation of a Peer Support Program for Autistic Young Adults.Autism in adulthood · 2025Article
- Waiting Times and Influencing Factors in Children and Adults Undergoing Assessment for Autism, ADHD, and Other Neurodevelopmental Differences.Autism research : official journal of the International Society for Autism Research · 2025Article
- A qualitative interview study on quality of life and ageing experiences of autistic adults.Communications psychology · 2024Article
- Development of the Impact of Diagnosis Scale-Revised (IODS-R).Assessment · 2024Article
- A Qualitative Study of Adults' and Support Persons' Experiences of Support After Autism Diagnosis.Journal of autism and developmental disorders · 2024Article
- Re-examining the association between the age of learning one is autistic and adult outcomes.Autism : the international journal of research and practice · 2024Article
- "I've Spent My Whole Life Striving to Be Normal": Internalized Stigma and Perceived Impact of Diagnosis in Autistic Adults.Autism in adulthood · 2023Article
- Toward a more comprehensive autism assessment: the survey of autistic strengths, skills, and interests.Frontiers in psychiatry · 2023Article
- Exploring the Experience of Seeking an Autism Diagnosis as an Adult.Autism in adulthood · 2022Article
- Implications of Applying "Clinically Significant Impairment" to Autism Assessment: Commentary on Six Problems Encountered in Clinical Practice.Journal of autism and developmental disorders · 2022Article
- A Survey of Autistic Adults from New Zealand on the Autism Diagnostic Process During Adolescence and Adulthood.Journal of autism and developmental disorders · 2022Article
- "A Group of Fellow Travellers Who Understand": Interviews With Autistic People About Post-diagnostic Peer Support in Adulthood.Frontiers in psychology · 2022Article
- Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology.BMJ open · 2020Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Awareness and diagnosis of autism in adulthood is on the rise. Studies have considered the impact of receiving an autism diagnosis for parents of children on the spectrum, although only few primarily qualitative studies have considered the self-reported impact of autism diagnosis. The Impact of Diagnosis Scale (IODS) was initially developed with a focus on borderline personality disorder. Our aim was to develop a version suitable for autistic individuals. Methods: The research team and a group of autistic advisors revised the IODS items for suitability and accessibility to autistic participants. We gathered participant data for 92 autistic adolescents and adults from the Cooperative Research Centre for Living with Autism (Autism CRC) Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We used iterated principal factors analysis to explore potential factors, and thematic analysis to explore responses to two open-ended items. Results: Factor analysis suggested three factors of "Service Access (SA)," "Being Understood (BU)," and "Self-Acceptance and Understanding (SU)" for the 12 items of the IODS-Preliminary Revision (IODS-PR). Cronbach's alpha was good overall and acceptable for subdomains. Item mean scores suggest that although impact of autism diagnosis was generally perceived as positive for SU, scores were neutral in other domains. Qualitative analysis identified themes of Conclusions: The IODS-PR is the first scale to measure the self-reported experience of receiving an autism diagnosis. It showed good psychometrics and provides new insight into the experience of autism diagnosis. Qualitative analysis identified domains that remain unexplored and the potential for an expanded item set. A further revision of the tool will soon be available. It will provide critical information for clinicians and has potential applications for research and service evaluation. Lay summary:
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