TY - JOUR
T1 - Challenges in assessing change in autistic adults
T2 - scale limitations and discrepancies in reporting in clinical trials
AU - Racine, Emma
AU - Taylor, Bonnie P.
AU - Ferretti, Casara J.
AU - Doernberg, Ellen
AU - Noone, Rachel
AU - Nezgovorova, Vera
AU - Vats, Tarini
AU - Hollander, Eric
N1 - Funding Information:
This work was supported by the Simons Foundation under Grant number [206808] and by Coronado Biosciences.
Publisher Copyright:
© 2021 Informa UK Limited, trading as Taylor & Francis Group.
PY - 2022
Y1 - 2022
N2 - 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.
AB - 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.
KW - Search terms: adult autism
KW - autism spectrum disorder
KW - clinical trials
KW - outcome measures
KW - parent-rated scales
KW - rating scales
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U2 - 10.1080/13651501.2021.1900871
DO - 10.1080/13651501.2021.1900871
M3 - Comment/debate
C2 - 33779470
AN - SCOPUS:85103370316
SN - 1365-1501
VL - 26
SP - 3
EP - 7
JO - International Journal of Psychiatry in Clinical Practice
JF - International Journal of Psychiatry in Clinical Practice
IS - 1
ER -