Research has indicated that males diagnosed with autism spectrum disorder (ASD) outnumber females diagnosed with ASD, which has been attributed to a number of potential biological and genetic risk factors. The purpose of this paper is to estimate how many girls may be missing from ASD via a two-study format, comparing two distinct data sets to Centers for Disease Control and Prevention population estimates for sex distribution of males vs females in ASD.
In Study 1, the authors utilized data from the National Database for Autism Research as a clinic-based sample. In Study 2, the authors utilized data from the National Survey of Children’s Health as a community-based sample.
The current study estimates that approximately 39 percent more girls should be diagnosed with ASD. The authors estimate that the sex distribution in ASD should be approximately 28 percent female and 72 percent male based upon current practices. Thus, it appears that more females are being identified as potentially having ASD but were not subsequently being diagnosed with ASD as compared to their male counterparts.
These results could suggest that a leaky pipeline in the assessment of girls with ASD may exist along one or more points in the ASD diagnostic process, with one potential point at the level of ASD-specific screening (i.e. the SCQ in Study 1) in the clinic setting and another in the community setting as a whole for universal screening (i.e. NSCH data in Study 2).
The authors have no conflict of interest to declare. This study was supported by grant, R40 MC27475, R40 MCH Autism Secondary Data Analysis Studies (SDAS) Program, from the Maternal and Child Health Bureau, Health Resources and Services Administration, Department of Health and Human Services. Data used in the preparation of this paper reside in the NIH-supported NIMH Data Repositories, specifically the National Database for Autism Research. The following collections (Investigators) were utilized: Electrophysiologic Studies of Language Impairment in ASD (Timothy Roberts); Longitudinal MRI Study of Infants at Risk for Autism (Joseph Piven); UIC ACE: Translational Studies of Insistence on Sameness in Autism (Ed Cook); Restricted Interests and Repetitive Behaviors in Autism (Gabriel Dichter); PDN Screening Data (Audrey Thurm); CBT for Anxiety in Adolescents with Autism (Eric Storch); Computer Adaptive Testing of Adaptive Behavior of Children and Youth with Autism (Coster); Decoding “what” and “who” in the auditory system of children with autism spectrum (Vinod Menon).
Barnard-Brak, L., Richman, D. and Almekdash, M.H. (2019), "How many girls are we missing in ASD? An examination from a clinic- and community-based sample", Advances in Autism, Vol. 5 No. 3, pp. 214-224. https://doi.org/10.1108/AIA-11-2018-0048
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