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      How many girls are we missing in ASD? An examination from a clinic- and community-based sample

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          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).

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          Most cited references 29

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          Epidemiological surveys of autism and other pervasive developmental disorders: an update.

           Eric Fombonne (2003)
          This paper was commissioned by the committee on the Effectiveness of Early Education in Autism of the National Research Council (NRC). It provides a review of epidemiological studies of pervasive developmental disorders (PDD) which updates a previously published article (The epidemiology of autism: a review. Psychological Medicine 1999; 29: 769-786). The design, sample characteristics of 32 surveys published between 1966 and 2001 are described. Recent surveys suggest that the rate for all forms of PDDs are around 30/10,000 but more recent surveys suggest that the estimate might be as high as 60/10,000. The rate for Asperger disorder is not well established, and a conservative figure is 2.5/10,000. Childhood disintegrative disorder is extremely rare with a pooled estimate across studies of 0.2/10,000. A detailed discussion of the possible interpretations of trends over time in prevalence rates is provided. There is evidence that changes in case definition and improved awareness explain much of the upward trend of rates in recent decades. However, available epidemiological surveys do not provide an adequate test of the hypothesis of a changing incidence of PDDs.
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            Limitations of the Application of Fourfold Table Analysis to Hospital Data

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              Sex differences in autism spectrum disorder: an examination of developmental functioning, autistic symptoms, and coexisting behavior problems in toddlers.

              Little is known about the female presentation of autism spectrum disorder (ASD) during early childhood. We investigated sex differences in developmental profiles using the Mullen Scales of Early Learning, autistic symptoms on the ADOS-G, and coexisting behavior problems on the CBCL in 157 boys and 42 girls with ASD aged 1.5-3.9 years. Overall, boys and girls evidenced a markedly similar pattern of developmental profiles, autism symptoms, and coexisting behavior problems, although subtle differences exist. Boys and girls evidenced a similar pattern of developmental strengths and weaknesses. Girls with ASD evidenced greater communication deficits than boys and boys evidenced more restricted, repetitive, and stereotyped behavior than girls. Girls exhibited more sleep problems and anxious or depressed affect than boys.

                Author and article information

                Advances in Autism
                Emerald Publishing
                03 July 2019
                : 5
                Issue : 3 Issue title : Women, girls, and autism spectrum disorders: part II Issue title : Women, girls, and autism: part I
                : 214-224
                Department of Educational Psychology, University of Alabama , Tuscaloosa, Alabama, USA
                Department of Educational Psychology and Leadership, Texas Tech University , Lubbock, Texas, USA
                College of Education, Texas Tech University , Lubbock, Texas, USA
                Author notes
                Lucy Barnard-Brak can be contacted at:
                623584 AIA-11-2018-0048.pdf AIA-11-2018-0048
                © Emerald Publishing Limited
                Page count
                Figures: 0, Tables: 3, Equations: 0, References: 44, Pages: 11, Words: 6737
                research-article, Research paper
                cat-HSC, Health & social care
                cat-LID, Learning & intellectual disabilities
                Custom metadata

                Health & Social care

                Assessment, Autism spectrum disorder, Identification


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