Challenges in assessing change in autistic adults: scale limitations and discrepancies in reporting in clinical trials

Abstract

Autism Spectrum Disorder (ASD) is a developmental disorder marked by deficits in social communication and social interaction, together with restricted and/or repetitive patterns of behaviours, activities or interests. As more adults are being diagnosed with ASD, and more diagnosed children are aging into adulthood, the need for effective treatments and support services for autistic adults is quickly growing. As such, clinical research targeting autistic adults has emerged in recent years. Currently, caregiver ratings are commonly used as outcome measures in child treatment studies, but these scales present challenges when utilised to assess the autistic adult population. In this commentary, we seek to unveil the difficulties and obstacles in assessing change in clinical treatment trials for autistic adults. Specifically, this article uses case examples to explore the limitations of rating scales. Steps for improving the accuracy of ratings, and for developing novel self-rating scales for autistic adults are discussed. It is hoped that in exploring these difficulties in more depth, clinical research with adult ASD populations will continue to improve and that reliable, valid and sensitive outcome measures will be developed to ensure the highest quality treatments emerge.

Keywords:

• Search terms: adult autism
• autism spectrum disorder
• parent-rated scales
• outcome measures
• rating scales
• clinical trials

Author contributions

Emma Racine conceived the concept for the article. Emma Racine and Bonnie Taylor drafted the manuscript. Emma Racine, Bonnie Taylor, Ellen Doernberg, Casara Ferretti and Rachel Noone acquired the data and contributed to the interpretation of the manuscript. Tarini Vats and Vera Nezgovorova contributed to the interpretation of the manuscript. Eric Hollander obtained funding, supervised the research, and contributed to the interpretation of the manuscript. All authors provided critical feedback and approved the final version of the manuscript to be published.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Simons Foundation under Grant number [206808] and by Coronado Biosciences.