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. Our aim was to develop a revised version suitable for autistic adults and potentially other diagnostic groups. Following a trial of a preliminary revision (Arnold et al., 2020), the researchers and autistic research advisors co-produced an expanded pool of 46 items, scored on 7-point Likert scale, within 6 hypothesised 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.

Keywords: Diagnosis, Assessment, Autism, Scale development, Inclusive research

Citation

Arnold SRC, Huang Y, Lawson LP, Higgins JM, Hwang YIJ, Richdale A, Trollor JN. Development of the Impact of Diagnosis Scale-Revised (IODS-R). Assessment. 2024 Jun;31(4):908-919. doi: 10.1177/10731911231196486. Epub 2023 Sep 12. PMID: 37700577; PMCID: PMC11092292. doi/10.1177/10731911231196486