Evidence map›Paper›PMID 36054081›Full record

ArticleAutism research : official journal of the International Society for Autism Research2022

Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment-to-research pipeline.

Anila M D'Mello, Isabelle R Frosch, Cindy E Li, Annie L Cardinaux, John D E Gabrieli

Open access · hybridAbstract read
In one paragraph

Article in Autism research : official journal of the International Society for Autism Research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 79 papers, 6 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
79citing papers in PubMed, 6 pooled it
18.4field-weighted citation impact, top 1% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

79 citing papers in PubMed, 6 syntheses or guidelines pooled it, 169 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Pooled it
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  5. Pooled it
  6. Pooled it
  7. Trial
  8. Article
  9. Article
  10. Intact Visual Correlation Detection in Autistic Adults.Autism research : official journal of the International Society for Autism Research · 2026
    Article
  11. Article
  12. Developmental Trajectories of Autistic Social Traits in Youth Born Extremely Preterm.Journal of the American Academy of Child and Adolescent Psychiatry · 2026
    Article
  13. Article
  14. Untangling Sex and Gender Differences in Impression Management and Associated Autism Features in French Autistic Adults.Autism research : official journal of the International Society for Autism Research · 2026
    Article
  15. Adverse Childhood Experiences in Autistic and Neurotypical Girls.Autism research : official journal of the International Society for Autism Research · 2026
    Article
  16. Article
  17. Review
  18. Genetic Testing History in Adults With Autism Spectrum Disorder.Journal of autism and developmental disorders · 2026
    Article
  19. Review
  20. Article

19 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors at 3 institutions in 1 country.

Anila M D'MelloMcGovern Institute for Brain Research, Massachusetts Institute of Technology, Cambridge, Massachusetts, USA.ORCID 0000-0001-6653-7802
Isabelle R FroschDepartment of Psychology, Northwestern University, Evanston, Illinois, USA.ORCID 0000-0001-9508-2747
Cindy E LiHock E. Tan and K. Lisa Yang Center for Autism Research at Massachusetts Institute of Technology, Cambridge, Massachusetts, USA.
Annie L CardinauxMcGovern Institute for Brain Research, Massachusetts Institute of Technology, Cambridge, Massachusetts, USA.
John D E GabrieliMcGovern Institute for Brain Research, Massachusetts Institute of Technology, Cambridge, Massachusetts, USA.
McGovern Institute for Brain Research · USMassachusetts Institute of Technology · USNorthwestern University · US

Funding

Characterizing Neural Adaptation in Autism Spectrum DisorderF32MH117933 · NIMH · MASSACHUSETTS INSTITUTE OF TECHNOLOGY · PI DMELLO, ANILA · 2018 to 2022
$222k
NIMH NIH HHS F32 MH117933
6 · The paper itself

Abstract

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.

Indexed as

Autism Spectrum DisorderAutistic DisorderAdultFemaleHumansMaleRetrospective StudiesABIDEADOSAutism Physical Health Surveyautism spectrum disorderChannel 4diagnosisexclusion criteriafemalesIMAGESinclusion criteriaLifeLinesMusicial Universerecruitmentsex differencesSPARK

Identifiers

PMID36054081
PMCPMC9804357
OpenAlexW4292601991

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.