Development of the Impact of Diagnosis Scale–Revised (IODS-R)

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Arnold, S. R. C., Huang, Y., Lawson, L. P., Higgins, J. M., Hwang, Y. I., Richdale, A. L., & Trollor, J. N. (2023). Development of the Impact of Diagnosis Scale–Revised (IODS-R). Assessment, 31(4), 908-919. https://doi.org/10.1177/10731911231196486

Publication date: 12 Sep 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
7
Publication authors identified as autistic
1 / 7 (14.3%)
  1. Samuel R. C. Arnold
  2. Yunhe Huang
  3. Lauren P. Lawson
  4. Julianne M. Higgins *
  1. Ye In Hwang
  2. Amanda L. Richdale
  3. Julian N Trollor

Abstract

No tools quantify the experience, psychological, and practical impact of receiving a diagnosis from a non-deficit perspective. Autism is increasingly late diagnosed in adulthood. The Impact of Diagnosis Scale (IODS) was initially developed for borderline personality disorder. We aimed to develop a revised version suitable for autistic adults and potentially other diagnostic groups. Following a trial of a preliminary revision, the researchers and autistic research advisors co-produced an expanded pool of 46 items, scored on 7-point Likert-type scale, within 6 hypothesized domains. Scale reduction processes were applied to data from 125 formally diagnosed autistic adults. Following iterative rounds of factor analysis using maximum likelihood estimation with Promax rotation, 22 items were retained across 4 domains to comprise the IODS-R. The IODS-R adds new understanding to the experience of receiving an autism diagnosis in adulthood. It may be useful for evaluating diagnostic services and other diagnostic groups.

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Cited references
64
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 64 (12.5%)
Cited author occurrences identified as autistic
14 / 270 (5.2%)
Among occurrences linked to AutiHub author records: 14 / 97 (14.4%). Distinct cited authors identified as autistic: 9 / 236 (3.8%).
Cited author occurrences linked to AutiHub author records
97 / 270 (35.9%)
Distinct linked cited authors: 65 / 236 (27.5%)
Linked cited-author occurrences not identified as autistic
83 / 97 (85.6%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 83 / 270 (30.7%). Distinct linked cited authors not identified as autistic: 56 / 65 (86.2%).
2 cited bibliography entries could not be fully enriched from DOI metadata.
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