An intersectional approach to evaluate the impact of race, ethnicity, and gender on age of autism spectrum disorder diagnosisOverviewHealth disparities are population-level health differences due to biological, behavioral, sociocultural, and environmental factors (Hill et al. 2015).
The proposed study aims to evaluate health disparities in children with autism spectrum disorder (ASD) by looking at age of diagnosis. The study will focus on sociocultural factors that influences health disparities, specifically race, ethnicity, and gender through an intersectional approach. Although current literature demonstrates disparities in age of autism diagnosis based on singular constructs including race, ethnicity, and gender, to my knowledge no studies have examined the impact of holding multiple of the above minority identities.Intersectionality theory provides framework for looking at the compound effects of holding multiple minority identities (Crenshaw, 1989). Individuals belong to many different social construct groups based on their race, ethnicity, gender, social class, among others. The interaction between these distinct identities creates unique experiences with privilege and disadvantages (Rosenthal, 2016). Intersectionality theory has received increased attention in psychology and has provided a framework to study several distinct psychological phenomena, including health disparities (Rosenthal, 2016).
Autism spectrum disorder is a neurodevelopmental disorder marked by deficits in social interactions, as well as restricted and repetitive behavior, interests, or activities (APA, 2013). Early diagnosis of ASD has been associated with better outcome, as early intensive behavior intervention (EIBI) is the best practice for treatment for ASD, and research has shown its importance for reducing intellectual, behavioral, and functional impairment (Emerson, Morrell, & Neece, 2016). Background & SignificanceIntersectionality theory became an established framework after Kimberlé Creshaw’s seminal paper where she examined how different power structures interact in order to create a unique struggle for minorities, namely Black women (Crenshaw, 1989). It moves beyond single favored categories of analysis, such as race, gender, and class by considering simultaneous interactions between multiple aspects of social identity, and the impact of systems and processes of oppression (Hankivsky, 2012). Literature examining intersectionality has grown exponentially over the last decade providing a framework to better understand the multidimensional reality of human lives (Hankivsky, 2012). Although, intersectionality is still mostly used in the context of feminist theory to better understand experiences of minority women, the term has broader applicability in studying disparity and inequality (Theara, ; Abbott, 2015).Warner and Brown conducted longitudinal data analyses to evaluate health disparities in age-trajectories of disability across race/ethnicity and gender.
Their findings support the use of an intersectional approach in order to better understand health disparities, as White men had the lowest level of disability at baseline, followed by White women and racial/ethnic minority men, and lastly Black and Hispanic Women had the highest level of disability (Warner ; Brown, 2011). These health disparities remained stable across time for all groups except Black women, who experienced disablement at an accelerated rate. Warner and Brown demonstrated how single constructs such as race or gender do not provide a complete picture when looking at life span and disability.
Intersectionality theory has received little attention in autism research. Theara and Abbot, used an intersectional framework to better understand how disability, specifically autism, interacts with culture by looking at parental perspectives of South Asian parents living in the United Kingdom (Theara, ; Abbott, 2015). Their results demonstrated that South Asian parents of children with autism were more likely to understand ASD through the medical model than the social model. The social model is the most prominent view in the United Kingdom, illustrating how minority families experience disability differently from other families. Another study used intersectional framework to explain unique experiences of D/deaf children with ASD and the multiplicity of their experience, in particular when assessing for ASD (Brenman, Hiddinga, ; Wright, 2017). The authors advocated for intersectionality as useful approach for understanding all complex diagnostic practices involving multiple biopsychosocial and cultural dimensions.When looking at age of autism diagnosis in the United States, discrepancies exists across race, ethnicity, and gender.
Black children are diagnosed 1.6 years later than the white children, and Hispanic children also being diagnosed later than white children (Stronach ; Wetherby, 2017; Mandell, Listerud, Levy, ; Pinto-Martin, 2002). Black children are also more likely than White children to receive another diagnosis prior to receiving an ASD diagnosis (Bishop-Fitzpatrick ; Kind, 2017). A recent study of diagnoses across race and ethnicity found a lower prevalence of ASD in Black and Hispanic groups compared White children, suggesting that mild and moderate cases of ASD may be underdiagnosed in these groups (Jo et al.
, 2015). In contrast to the current literature, a study looking at retrospective data collected from the Autism Speaks Autism Treatment Network (AS-ATN) evaluated demographic factor associated with age of diagnosis, found no significant differences between race or ethnicity and age of diagnosis in their sample (Mazurek et al., 2014).Moreover, research has shown that ASD clinical presentation is different in males and females, leading to delayed diagnosis or even missed diagnosis in girls with autism. Girls and women who present with ASD symptoms may be diagnosed with other disorders, such as borderline personality disorder or social phobia, instead of ASD (Van Wijngaarden-Cremers et al., 2014).
Similarly, research has shown that caregivers and teachers report different initial pre-diagnostic concerns across genders (Harrison, Long, Tommet, ; Jones, 2017). The ratio ASD of male to female 4.3:1 (Fombonne, 2003). Due to the different prevalence across genders most ASD research is conducted on a predominantly male sample. Little research has been conducted on how autism manifests in females, even though there is evidence that the core symptoms of ASD are different across genders, more specifically that age influences the gender difference symptomatology. A meta-analysis looking at gender differences, concluded that males and females with ASD demonstrated comparable symptom severity on social behavior and communication, however females showed less restricted interests, behaviors, and stereotypes than males (Van Wijngaarden-Cremers et al.
, 2014).Significant disparities exist in the early detection and treatment of autism across groups. These discrepancies could be a result of several factors including: differences in help-seeking behaviors, advocacy and support, cross-cultural differences in ASD symptom recognition, as well as clinician behaviors (Mandell et al., 2002; Harrison et al.
, 2017). In order to better understand clinician behavior and assessment biases, some researchers have looked at the Autism Diagnostic Observation Schedule (ADOS), to see if item-level biases exist for members of different groups (Harrison et al., 2017). The ADOS is a widely used diagnostic measures, where observed social behavior is rated based on operational definitions of behavior ranging from typical to consistent with ASD. Their findings suggest that there were significant item level biases for race and ethnicity on three of the ADOS items, with black children more likely to receive a more atypical ratings on items assessing levels of immediate echolalia, stereotyped or idiosyncratic word use, and unusual eye contact (Harrison et al.
, 2017). Hispanic children also received higher ratings on items that assess unusual eye contact.Better understanding of factors that delay autism diagnosis is vital to remediated health disparities faced by those with autism as age at EIBI initiation is one of the strongest predictors of treatment outcomes (Mazurek et al., 2014). EIBI theory was first developed by Lovaas in the late eighties where he demonstrated the effectiveness of early and intensive behavior intervention for young children with ASD and positive long-term effects of treatment (Lovaas, 1987).
The intervention is comprehensive in nature and is typically provided in a one-to-one format for 20 to 40 hours a week (Perry et al., 2011). Early intervention is designed to capitalize on the crucial period for language and cognitive development during the preschool years (Mazurek et al., 2014). A study looking at 332 children enrolled in a province-wide program in Canada revealed that compared to children who began EIBI at 4 years old or older, those who began EIBI prior to 4 years old had better outcomes on most measures at the completion of the program (Perry et al., 2011). While experienced diagnosticians may diagnose ASD in children as young as 12 months old, most children get diagnosed at four years of age (Christensen, 2016).
Early initial diagnosis is extremely important for clinical care and outcomes for children with ASD, so it is paramount to evaluate the impact of different and combined social categorizations on age of ASD diagnosis. This proposed study aims to evaluate differences in the age of diagnosis as a proxy to age of treatment. However, it is important to acknowledge that beyond age of diagnosis, children belonging to minority groups experience a greater time lag between diagnosis and onset of treatment, further increasing the importance of early detection (Yingling, Hock, ; Bell, 2018).CritiqueIntersectionality theory has gained increase attention in psychology throughout the years providing a useful framework to better understand experiences with power and privilege.
Different forms of oppression overlap, creating unique experiences that cannot be understood in fully by studying them in isolation. Literature reviewed for this proposed study evaluated intersectionality between race and gender, combined disability status, race/ ethnicity and gender, and ASD diagnosis and minority cultural identity. A strength of intersectionality theory is that it can be applied to a broad array of psychological phenomena in in order to better understand human experience as well as recognize and address inequalities and disparities faced by people belonging to multiple marginalized groups.
However, a current weakness of intersectionality research is that it has been mostly limited to qualitative methods (Else-Quest ; Hyde, 2016). Although applications of intersectionality theory in quantitative methods exist and components of intersectionality are incorporated in quantitative methods, often times the research is not clearly framed as intersectional (Else-Quest ; Hyde, 2016). Future quantitative studies should utilize intersectional theory when trying to understand disparities.Factors that affect age of autism diagnosis has been extensively studied, as early detection and treatment is the best practice in the field.
The high volume of research on the topic is a strength of the literature. However, when looking at factors that influence age of ASD diagnosis researchers have focused on single dimensions. Even when evaluating multiple factors that affect age of autism diagnosis, factors are evaluated and analyzed in isolation. For example, research has looked at gender difference impact on age of autism, as well as differences between White children and children belonging to ethnic and racial minorities.
The lack of intersectional research when evaluating age of diagnosis is a limitation and a gap in the autism literature. Research has shown that Black children on average get diagnosed later than White children, as well as girls on average receive an ASD diagnosis later than boy, however to my knowledge no research has investigated the differences through an intersectional approach by evaluating the impact of belonging to multiple minority groups (i.e. Black and girl).Proposed StudyIntroduction: In light of current ASD research and the widespread use of the intersectionality theory to better understand social inequities, this proposed study aims to answer the following question: Does the intersectionality between race, ethnicity, and gender influence the age of ASD diagnosis? The literature has shown that singular constructs including race, ethnicity, and gender, impacts age of diagnosis. This current study aims to analyze the combining effect of holding multiple minority identities, such as female and Black or Black and Hispanic, and hypothesizes that children holding multiple minority identities will be diagnosed later than those holding a single minority identity.
Participants: In order to evaluate this research question, children with ASD diagnosis ages 2-17 whose parents completed the National Survey of Children’s Health (NSCH) will be included in this study. Recruitment is not applicable as the data is fully retrospective. Previous research has used the NSCH dataset to study ASD and the sample obtained was large, giving the study power to perform statistical analyses. For instance, the sample from the 2011 data set included 1624 children with ASD (Emerson et al., 2016).Procedure: The data used for the proposed study is fully retrospective and collected by the NSCH.
The national survey was conducted via random-digit dialed telephones to both landlines and cellphones. Information on gender, race, ethnicity, and age of diagnosis will be collected from the NSCH 2016-2017 database for those whose parents answered affirmatively to: ”Does CHILD’S NAME currently have autism or autism spectrum disorder?” Following that, parents were asked, ”How old was CHILD’S NAME when you were first told by a doctor or other health care provider that (he/she) had CONDITION?” Measures:All data will be collected from the National Survey of Children’s Health, a national dataset on physical and mental health, access to quality health care, and child’s family, neighborhood, school, and social context of children 0-17 years old. The NSCH includes all demographic information needed for the study.
As a part of the survey parents are asked whether the selected child have several diagnoses, including ASD.Analytic plan: The dependent variable for this study is age of autism diagnosis, and the independent variables are: race, ethnicity, and gender. An analysis of variance (ANOVA) comparing age of ASD diagnosis across race, ethnicity, and gender, and the interaction of these, will be performed on SPSS to explore compounding effect of holding more than one of the above minority identities. In addition, a logistic regression will be performed to examine how race, ethnicity, and gender are related to age of diagnosis.
Age of diagnosis will be dichotomized into early diagnosis (prior to age age) or late diagnosis (after age four) as age four is consistently the cutoff point in the literature (Perry et al. 2011).