Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old. Using a grounded theory approach, we solicited the perspectives of parents and other primary caregivers of Black children with ASD on barriers and facilitators to ASD screening and referrals in primary care. A socioeconomically diverse sample of 22 female caregivers participated. Four themes emerged. First, while some caregivers noted their child's primary healthcare providers facilitated a timely ASD diagnosis, other participants reported these providers ignored early concerns about child developmental delays. Second, many participants felt racial bias negatively impacted caregiver-primary healthcare provider interactions. Third, legal/custodial issues slowed caregivers' abilities to follow up on referrals from their primary healthcare providers. Finally, caregivers described denial, shame, and stigma relating to ASD in the Black community as possible factors for delayed follow up to referrals. Differences based on socioeconomic status are discussed. Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.
Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of women's knowledge about cervical and breast cancer screening, with the intention of informing the development and testing of interventions to increase cervical and breast cancer screening rates for these women. In a sample of 202 community-dwelling women with developmental disabilities, most women had little knowledge of cervical and breast cancer screening. Women who were living at home with family caregivers had the most limited understanding of cervical and breast cancer screening. Policy and practice implications are discussed.
Evidence-based practices (EBPs) in early intervention for autism spectrum disorder (ASD) have the potential to improve children’s developmental trajectories and address family needs. However, the successful use of EBPs in community early intervention settings requires careful attention to the context in which services are delivered. Implementation science, and specifically the Exploration, Preparation, Implementation, and Sustainment (EPIS) Model, provides a framework to examine context across multiple levels and identify barriers and facilitators to community EBP use. This article identifies several considerations most relevant for early intervention in ASD at the outer and inner context levels, as well as bridging and innovation factors. Outer context considerations include the policies and funding streams surrounding service delivery, the role of advocacy in shaping the service landscape, the availability of appropriate specialists to provide services, and family cultural characteristics. Inner context factors include the individual characteristics of both the children receiving the service as well as the provider delivering the service, in addition to the leadership and organizational climate surrounding the use of a particular EBP. We also discuss considerations of the specific innovation (in this case, EBP early interventions) to be deployed, as well as bridging factors.
Challenges related to raising a child with autism spectrum disorder (ASD) have significant impacts on parents and other caregivers, including elevated stress, more depressive symptoms, and lower levels of well-being, compared to those raising children without ASD (Estes et al., 2009;Phetrasuwan and Shandor Miles, 2009;Schieve et al., 2007). Some major sources of stress experienced by parents with children with ASD are challenging child behaviors, limited information about ASD, poor access to services, transportation, and financial burden (Tehee et al., 2009). ASD and related family functioning in non-Western countries, such as those in the Middle East, have been relatively overlooked in the academic literature. Yet, ASD is vastly heterogeneous (Habayeb et al., 2017) and the clinical presentation and identification of the disorder are influenced by cultural and socioeconomic factors (El-Ghoroury
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.