Mixed-Methods Study of Diagnostic and Functional Challenges of African-American Preschoolers

Children from ethnic minority backgrounds, such as African-American and Hispanic, generally receive their diagnosis of autism spectrum disorder (ASD) later than nonminority children, typically after age 4 yr. As a result, they may miss critical windows associated with neuroplasticity where early intervention for receiving occupational therapy and other services would be most beneficial for acquiring adaptive functioning skills. The purpose of this mixed-methods study was to explore the relationship between symptom severity and functional difficulties with age at diagnosis for ASD, as well as describe the diagnostic experiences and functional challenges encountered by preschool-age children of African-American descent with ASD.

The research questions for this mixed method study were as follows: (1) How does symptom severity relate to age of diagnosis, (2) how does the degree of reported functional challenges relate to age of diagnosis, and (3) how do parents describe adaptive functioning challenges related to performance and participation?

A sequential explanatory design was chosen for this mixed-methods study to first quantitatively analyze responses from the 2009–2010 National Survey of Children With Special Health Care Needs (NS–CSHCN) and then qualitatively gather personal accounts using interviews from parents of African-American preschool-age children with ASD. Parents who responded to the NS–CSHCN and provided demographic responses identifying themselves as having a child of African- American background with a diagnosis of ASD, as well as indicated ASD severity level and degree of functional challenges (N = 224), were selected for the quantitative component of the study using subpopulation features of SPSS Version 21, Complex Samples. Qualitative participants were selected through convenience sampling (N = 3), as recruitment efforts were aimed at local clinical and community-based therapy providers who provide services to preschool-age children with ASD and agreed to allow solicitation of their families for participation in this study. Initially a minimum of 5 qualitative participants were recruited who identified themselves as parents of a child <6 yr of age of African-American descent with ASD, with 3 parents completing the study.

Regression analysis of the quantitative data from the NS–CSHCN questions related to age at diagnosis, degree of functional challenge, and ASD severity were first completed and followed by qualitative interviews conducted using the Short Child Occupational Profile Parent Interview Extended Format and Parent Report Form, which is based on the theoretical Model of Human Occupation, and later coded for themes using NVivo Version 10.

No significant relationships were found using general linear between models for age at diagnosis and symptom severity or degree of functional challenges. Qualitative themes that emerged included challenges with the diagnosis process, routines and transitions, communication, family and home environment, and school and community environments. The results highlight the need to enhance screening for early signs of ASD and improve interventions to address challenges across multiple environments., racial and cultural implications related to interpersonal factors, as well as performance and participation challenges, that may influence later diagnosis need to be considered.

Implications for practice include the need for effective and targeted awareness campaigns and improved diagnostic and intervention services for children with developmental delays and ASD from minority backgrounds and their families, with occupational therapists potentially being key to this process.