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Assessing autism in school settings: Meeting underserved, diverse population needs.
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Racial differences in parent report of concerns about their child’s development to healthcare providers may contribute to delayed autism spectrum disorder diagnoses in Black children. We tested the hypotheses that compared to White parents, Black parents of children with autism spectrum disorder would report fewer concerns about autism symptoms and would be more likely to report concerns about disruptive behaviors. A sample of 18- to 40-month-old toddlers (N = 174) with autism spectrum disorder and their parent participated. After screening positive for autism spectrum disorder risk, but prior to a diagnostic evaluation, parents completed free-response questions soliciting concerns about their child’s development. Parent responses were coded for the presence or the absence of 10 possible concerns, which were grouped into autism concerns (e.g. social and restricted and repetitive behavior concerns) or non-autism concerns (e.g. general developmental and disruptive behavior concerns). Compared to White parents, Black parents reported significantly fewer autism concerns and fewer social and restricted and repetitive behavior concerns. However, Black parents did not report significantly fewer non-autism concerns. Race did not influence parent report of disruptive behavior concerns. Lower reporting of autism concerns by Black parents may impact providers’ abilities to identify children who need further screening or evaluation.
The Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), Module 4 is considered a "gold-standard" instrument for diagnosing autism spectrum disorder (ASD) in adults. Although the ADOS-2 shows good sensitivity and specificity in lab-based settings, it is unknown whether these results hold in community clinics that serve a more psychiatrically impaired population. This study is the first to evaluate the diagnostic accuracy of the ADOS-2 among adults in community mental health centers (n = 75). The ADOS-2 accurately identified all adults with ASD; however, it also had a high rate of false positives among adults with psychosis (30%). Findings serve as a reminder that social communication difficulties measured by the ADOS-2 are not specific to ASD, particularly in clinically complex settings.
Autism Diagnostic Observation Schedule-2 is the ‘gold standard’ autism spectrum disorder observational assessment, and it is increasingly used in South Africa. However, its use is limited to English speakers, as it has not been translated into the country’s other 10 official languages. Moreover, the cultural appropriateness of this tool has not been explored in South Africa. The Autism Diagnostic Observation Schedule-2 was translated into Afrikaans and assessed for cultural appropriateness to the ‘coloured’ population from low-middle socioeconomic status backgrounds in the Western Cape Province. Using a mixed-methods approach, three components associated with method bias in the Autism Diagnostic Observation Schedule-2 were investigated: language used, social interactions and activities, and materials. An ethnographic investigation of play, social interaction and social activities was conducted in a community sample (n = 40), and the Afrikaans Autism Diagnostic Observation Schedule-2 was pre-piloted in a clinical sample (n = 7). Results highlighted unique aspects of the language (‘Kaaps’) that need to be considered during Autism Diagnostic Observation Schedule-2 administration. The social interaction demands of the Autism Diagnostic Observation Schedule-2 appeared appropriate, and sufficient familiarity with Autism Diagnostic Observation Schedule-2 materials and activities was found to support the use of the Autism Diagnostic Observation Schedule-2. Guidelines for administration of the Autism Diagnostic Observation Schedule-2 to this population were generated to improve cultural sensitivity and cultural appropriateness and to reduce method bias.
Despite the stated importance of a successful kindergarten transition (TTK) for future school success, no research has addressed this transition for culturally/ethnically diverse families having children with autism spectrum disorders (ASD). To address this gap, six focus groups (three with ethnically diverse parents, one with kindergarten teachers, and one each with early childhood resource teachers and early intervention providers) were conducted to elicit the experiences of these stakeholders regarding TTK for children with ASD generally, and the TTK experience for ethnically diverse families specifically. Four major themes relating to TTK emerged from the focus groups: Relationship Building, Communication, Knowledge, and Support. While these themes were relevant for all groups, parents who were relatively recent immigrants and for whom English was not a first language identified unique difficulties. Results are discussed within the context of Bronfenbrenner’s Ecological Systems Theory. Recommendations to improve the experience for ethnically diverse families are explored.
Developmental disorders, such as autism spectrum disorder and specific language impairment, are biologically based disorders that currently rely on behaviorally defined criteria for diagnosis and treatment. Specific behaviors that are included in diagnostic frameworks and the point at which individual differences in behavior constitute abnormality are largely arbitrary decisions. Such decisions are therefore likely to be strongly influenced by cultural values and expectations. This is evident in the dramatically different prevalence rates of autism spectrum disorder across countries and across different ethnic groups within the same country. In this article, we critically evaluate the understanding of developmental disorders from a cultural perspective. We specifically consider the challenges of applying diagnostic methods across cultural contexts, the influence of cultural values and expectations on the identification and treatment of children with suspected disorders, and how cross-cultural studies can help to refine cognitive theories of disorder that have been derived exclusively from Western North American and European investigations. Our review synthesizes clinical, cultural, and theoretical work in this area, highlighting potential universals of disorder and concluding with recommendations for future research and practice.
The identification of children with autism spectrum disorder (ASD) during the first two years of life has become more promising; however, the probability of early ASD diagnoses does not always extend to African American children. This disparity has decreased the likelihood that African American children will benefit from early intervention services. This qualitative inquiry explored, via semi-structured interviews, the perceived factors that facilitate and impede early diagnoses and access to services among African American parents of young children with ASD. A constant comparative approach was employed and 15 themes related to diagnoses, services, and recommendations emerged (e.g., parent knowledge of ASD as a facilitator to diagnosis, "aggressive advocacy" as a barrier to accessing services, and parent education as a recommendation for addressing identified barriers). Parent advocacy and partnerships with professionals were overarching themes in this study. Implications for parent training related to knowledge of ASD, parent advocacy, and partnerships with professionals are discussed.
The purpose of this article is to highlight issues about diagnosis and management of autism spectrum disorders (ASDs) in all settings, along with care coordination for all children with ASDs. The article outlines differences between the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, 4th edition, revised (DSM-IV-TR) and the newer version (DSM-V) for ASDs. These changes may limit the eligibility of some children for services in school, leading to poorer social/academic outcomes, lower rates of employment, and decreased assistance in eventual independent living. Primary care providers identified a lack of knowledge regarding ASDs before the DSM-V was published, describing difficulty in making ASD diagnoses, recognizing early symptoms of developmental concern, and managing care. Care coordination is part of the role of the advanced practice nurse, and lack of understanding of ASD changes in the DSM-V may diminish the ability of advanced practice nurses to screen for ASDs and make the appropriate referrals.
The aim of this study was to determine if racial and ethnic disparities in the quality of provider interaction have changed between 2006 and 2010 for children with developmental disabilities and autism spectrum disorders (ASD). Data from the 2005/2006 and 2009/2010 National Survey of Children With Special Health Care Needs were analyzed. Results show that racial and ethnic disparities in the quality of provider interactions were substantial in both 2005/2006 and 2009/2010. Black and Latino parents were significantly less likely than White parents to report that their provider spent enough time with their child and was sensitive to the family's values. Racial and ethnic disparities in health care quality were found to be unchanged over time. Research and policy implications are discussed.
While clear guidelines and best practices exist for the assessment of autism spectrum disorders (ASD), little information is available about assessing for ASD in culturally and linguistically diverse (CLD) populations. CLD populations might be misidentified and under-identified with ASD due to the assessment practices that we employ. Four autism diagnostic tools and six autism screeners were selected and evaluated for their cultural and linguistic responsiveness. Although the evaluation of ASD within CLD populations is highly complex, this study identified the need for improved autism assessment tools and practices. Without the appropriate assessment of these populations, CLD children will likely continue to be misidentified (or not identified at all) and will miss crucial intervention opportunities.
Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) Manual (Part I)
- C Lord
- M Rutter
- P C Dilavore
• Lord C, Rutter M, Dilavore PC, et al. (2012) Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) Manual (Part I): Modules 1-4.