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., & Trollor, J. (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
Publisher source (DOI) Full text OpenAlex source

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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 (Jane) Hwang
  2. Amanda Richdale
  3. Julian 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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 13:57.

Cited references
64
With a DOI
59
Without a DOI, from raw bibliography text
4
8 / 64 (12.5%) cited references include at least one author identified as autistic.
References with data to complete
3 / 64 (4.7%)
References with detected author names
62 / 64 (96.9%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
4
References with raw author names still to review
1
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
270
From DOI or external metadata
270
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
108 / 270 (40.0%) names are linked to an author already present in AutiHub. 162 / 270 (60.0%) names are not yet linked.
Names linked to a person identified as autistic
18 / 270 (6.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 18 / 108 (16.7%). Distinct people identified as autistic: 12 / 235 (5.1%).
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