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

Emma Racine, Bonnie P. Taylor, Casara J. Ferretti, Ellen Doernberg, Rachel Noone, Vera Nezgovorova, Tarini Vats, Eric Hollander

Research output: Contribution to journalComment/debatepeer-review

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.

Original languageEnglish (US)
JournalInternational Journal of Psychiatry in Clinical Practice
DOIs
StateAccepted/In press - 2021

Keywords

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

ASJC Scopus subject areas

  • Psychiatry and Mental health

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