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Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline

Autism spectrum disorder (ASD) is characterized by challenges in social communication and the presence of repetitive behaviors or restricted interests. Notably, males are four times as likely as females to be diagnosed with autism. Despite efforts to increase representation and characterization of a...

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Autores principales: D'Mello, Anila M., Frosch, Isabelle R., Li, Cindy E., Cardinaux, Annie L., Gabrieli, John D.E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley & Sons, Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9804357/
https://www.ncbi.nlm.nih.gov/pubmed/36054081
http://dx.doi.org/10.1002/aur.2795
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author D'Mello, Anila M.
Frosch, Isabelle R.
Li, Cindy E.
Cardinaux, Annie L.
Gabrieli, John D.E.
author_facet D'Mello, Anila M.
Frosch, Isabelle R.
Li, Cindy E.
Cardinaux, Annie L.
Gabrieli, John D.E.
author_sort D'Mello, Anila M.
collection PubMed
description Autism spectrum disorder (ASD) is characterized by challenges in social communication and the presence of repetitive behaviors or restricted interests. Notably, males are four times as likely as females to be diagnosed with autism. Despite efforts to increase representation and characterization of autistic females, research studies consistently enroll small samples of females, or exclude females altogether. Importantly, researchers often rely on standardized measures to confirm diagnosis prior to enrollment in research studies. We retrospectively analyzed the effects of one such measure (Autism Diagnostic Observation Schedule, ADOS) on research inclusion/exclusion rates by sex in autistic adults, all of whom had a preexisting community diagnosis of autism (n = 145, 95 male, 50 female). Using the ADOS as a confirmatory diagnostic measure resulted in the exclusion of autistic females at a rate over 2.5 times higher than that of autistic males. We compared sex ratios in our sample to those in other large, publically available datasets that rely either on community diagnosis (6 datasets, total n = 42,209) or standardized assessments (2 datasets, total n = 214) to determine eligibility of participants for research. Reliance on community diagnosis rather than confirmatory diagnostic assessments resulted in significantly more equal sex ratios. These results provide evidence for a “leaky” recruitment‐to‐research pipeline for females in autism research. LAY SUMMARY: Despite efforts to increase the representation of autistic females in research, studies consistently enroll small samples of females or exclude females altogether. We find that despite making up almost 50% of the initially recruited sample based upon self‐report of community diagnosis, autistic females are disproportonately excluded from research participation as a result of commonly used autism diagnostic measures. In our sample, and several other publically available datasets, reliance on community diagnosis resulted in significantly more equal sex ratios.
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spelling pubmed-98043572023-01-03 Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline D'Mello, Anila M. Frosch, Isabelle R. Li, Cindy E. Cardinaux, Annie L. Gabrieli, John D.E. Autism Res PSYCHOLOGY Autism spectrum disorder (ASD) is characterized by challenges in social communication and the presence of repetitive behaviors or restricted interests. Notably, males are four times as likely as females to be diagnosed with autism. Despite efforts to increase representation and characterization of autistic females, research studies consistently enroll small samples of females, or exclude females altogether. Importantly, researchers often rely on standardized measures to confirm diagnosis prior to enrollment in research studies. We retrospectively analyzed the effects of one such measure (Autism Diagnostic Observation Schedule, ADOS) on research inclusion/exclusion rates by sex in autistic adults, all of whom had a preexisting community diagnosis of autism (n = 145, 95 male, 50 female). Using the ADOS as a confirmatory diagnostic measure resulted in the exclusion of autistic females at a rate over 2.5 times higher than that of autistic males. We compared sex ratios in our sample to those in other large, publically available datasets that rely either on community diagnosis (6 datasets, total n = 42,209) or standardized assessments (2 datasets, total n = 214) to determine eligibility of participants for research. Reliance on community diagnosis rather than confirmatory diagnostic assessments resulted in significantly more equal sex ratios. These results provide evidence for a “leaky” recruitment‐to‐research pipeline for females in autism research. LAY SUMMARY: Despite efforts to increase the representation of autistic females in research, studies consistently enroll small samples of females or exclude females altogether. We find that despite making up almost 50% of the initially recruited sample based upon self‐report of community diagnosis, autistic females are disproportonately excluded from research participation as a result of commonly used autism diagnostic measures. In our sample, and several other publically available datasets, reliance on community diagnosis resulted in significantly more equal sex ratios. John Wiley & Sons, Inc. 2022-08-22 2022-10 /pmc/articles/PMC9804357/ /pubmed/36054081 http://dx.doi.org/10.1002/aur.2795 Text en © 2022 The Authors. Autism Research published by International Society for Autism Research and Wiley Periodicals LLC. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle PSYCHOLOGY
D'Mello, Anila M.
Frosch, Isabelle R.
Li, Cindy E.
Cardinaux, Annie L.
Gabrieli, John D.E.
Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline
title Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline
title_full Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline
title_fullStr Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline
title_full_unstemmed Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline
title_short Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline
title_sort exclusion of females in autism research: empirical evidence for a “leaky” recruitment‐to‐research pipeline
topic PSYCHOLOGY
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9804357/
https://www.ncbi.nlm.nih.gov/pubmed/36054081
http://dx.doi.org/10.1002/aur.2795
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