Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review

Estrin, Georgia Lockwood; Milner, Victoria; Spain, Debbie; Happé, Francesca; Colvert, Emma

doi:10.1007/s40489-020-00225-8

Cited by 166 publications

(123 citation statements)

References 49 publications

(117 reference statements)

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“…Similar results have been obtained by other studies from India (Daley, 2004;Mahapatra et al, 2019;Preeti et al, 2017) and Nepal (Shrestha & Shrestha, 2014). However, there is conflicting evidence on differences in presenting concerns based on sex of the child (Lockwood Estrin et al, 2020), and we found some indication of lack of language being a presenting concern more often for girls than boys. This might relate to the theme that emerged from in-depth interviews that there is a widespread belief that boys speak later than girls.…”

Section: Discussionsupporting

confidence: 92%

“I was Confused … and Still am” Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study

Bhavnani

Estrin

Arora

et al. 2021

J Autism Dev Disord

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Timely recognition of autism in children is integral to improve developmental outcomes. This study used mixed-methods (84 case-registers and 20 in-depth interviews with caregivers of children with a diagnosis of autism) to explore the extent to which the nature of parental concerns and prior knowledge of developmental disorders impact the time between symptom recognition and autism diagnosis, and the contextual family, societal and health-system related factors that impede the autism help-seeking pathway. Lack of awareness of age-appropriate child developmental milestones, apparent amongst the community and health professionals, contributed to a 1.5-year delay between parental concerns and autism diagnosis. Recommendations to shorten this help-seeking pathway include harnessing the potential of non-specialist workers to increase awareness and enable developmental monitoring of young children through scalable tools.

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Section: Discussionsupporting

confidence: 92%

“I was Confused … and Still am” Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study

Bhavnani

Estrin

Arora

et al. 2021

J Autism Dev Disord

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“…Some parents may have attributed their child's differences or delays to the common perception that male children develop social communication skills more slowly than females. A complementary interpretation could be that parents of females were relieved that the telehealth procedures were sensitive enough to identify autism in their daughters considering previously documented barriers to diagnosis among females (Estrin et al, 2020). Without comparison data from traditional diagnostic models, it is difficult to determine whether parents of males find the telehealth model less acceptable or if they were less satisfied with the general diagnostic process.…”

Section: Discussionmentioning

confidence: 99%

Feasibility and acceptability of a telehealth model for autism diagnostic evaluations in children, adolescents, and adults

Matthews

Skepnek²,

Mammen

et al. 2021

Autism Research

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This study examined the feasibility and acceptability of a telehealth diagnostic model deployed at an autism center in the southwestern United States to safely provide autism spectrum disorder (ASD) diagnostic evaluations to children, adolescents, and adults during the COVID-19 pandemic. Participants included all clients for whom a telehealth diagnostic evaluation was scheduled at the diagnostic clinic (n = 121) over a 6-month period. Of 121 scheduled clients, 102 (84%) completed the telehealth evaluation. A diagnostic determination was made for 91% of clients (93 out of 102) using only telehealth procedures. Nine participants (two females; ages 3 to 11 years) required an in-person evaluation. Responses from psychologist and parent acceptability surveys indicated the model was acceptable for most clients. Psychologist ratings suggested that telehealth modalities used in the current study may be less acceptable for evaluating school-aged children with subtle presentations compared to children in the early developmental period, adolescents, and adults. Parents of females reported higher acceptability than parents of males. Findings contribute to the small but growing literature on feasibility and acceptability of telehealth evaluations for ASD and have implications for improving access to care during and after the COVID-19 pandemic. Lay SummaryThis study described telehealth methods for evaluating children, adolescents, and adults for autism spectrum disorder. Telehealth methods were generally acceptable to psychologists conducting the evaluations and parents of diagnostic clients. Psychologists reported the methods to be less acceptable for school-aged children and parents of males found the methods less acceptable than parents of females. The telehealth methods described may help to increase access to diagnostic professionals and reduce wait times for evaluations during and after the COVID-19 pandemic.

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“…Is it worth mentioning the study conducted by Lockwood-Estrin and collaborators [ 74 ] in which they carried out a systematic study to determine the possible intrinsic difficulties that could be the basis for the existing biases in women’s ASD diagnosis (i.e., in girls and young women under 21 years of age). They identified two main groups of possible difficulties.…”

Section: Other Theoretical Approachesmentioning

confidence: 99%

Diagnostic Tools for Autism Spectrum Disorders by Gender: Analysis of Current Status and Future Lines

et al. 2021

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Studies on the prevalence of autism spectrum disorders have shown gender disproportion. In recent years, there has been an increasing interest in this investigation area. There are two main research lines; the first is focused mostly on gender-related biological reasons that could account for low ASD prevalence in women (i.e., related to some protective factors related to hormones or the immune system, among others), and the second research line studies possible diagnostic biases. In the present study, a review of the latter line of research is made based on two main objectives: (a) analysis of possible biases in diagnostic tools and (b) other nonbiological ASD prevalence explained by gender differences. As a result of our theoretical review, we found that the articles reviewed showed contradictory results and possible diagnostic biases, not only in their design but also in their assessment standards. We concluded that specific or complementary diagnostic tools and procedures differentiated by gender should be developed in order to reduce these biases.

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Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review

Cited by 166 publications

References 49 publications

“I was Confused … and Still am” Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study

“I was Confused … and Still am” Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study

Feasibility and acceptability of a telehealth model for autism diagnostic evaluations in children, adolescents, and adults

Diagnostic Tools for Autism Spectrum Disorders by Gender: Analysis of Current Status and Future Lines

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