Parental Developmental Concerns of at Risk Underserved Young Children

Background: Significant disparities have been identified among poor and minority children in the identification and treatment of ASD.  Various factors may contribute to these disparities in identification. The first step in identification is to recognize a concern.  While healthcare providers are in an excellent position to recognize developmental and autism-specific concerns, numerous studies have shown that they do not consistently screen for developmental concerns including autism and even when developmental concerns are identified by health care providers the majority of the children are not linked to services. Child care providers do not consistently screen development and very few screen for autism. Reliance on parents to recognize and express developmental concerns depends on parental awareness of red flag behaviors and the receptiveness of providers to listen to and act upon the expressed parental concern.

This study examined parental concerns for an at risk group of young children from low income, racial or ethnic minority and/or Spanish-speaking families.

Objectives: To better understand what concerns drive parents of young underserved children to seek developmental evaluation

Methods: The data was collected as part of a larger study to validate a new autism screening tool designed for use in a young underserved population. Subjects were 24 to 60 months and either were Medicaid or non-insured, non-white, Hispanic or whose primary language in the home was Spanish. Subjects were drawn from hospital-based developmental clinics and from Federally Qualified Health Centers. At risk for ASD status was based on parent/caregiver or healthcare provider concern about child’s language, social, and/or behavioral development.  Parents of subjects completed the new autism screening tool (Developmental Check-In-DCI), Modified Checklist for Autism in Toddlers-Revised (M-CHAT-R), Social Communication Questionnaire (SCQ), a medical history form, adaptive behavior measure (ABAS) and demographic information.   The children were evaluated using the Mullen Scales of Early Learning and the ADOS--2. Clinical diagnosis was determined by licensed, experienced clinicians (developmental pediatrician, psychologist or advanced practice nurse based on patient history, observations and ADOS-2. Parental developmental concerns presented here were extracted from the DCI item “Do you have any concerns about your child’s development or behavior? If so, please describe”.

Results: Data will be analyzed using modified grounded theory in which themes are allowed to emerge from the data rather than imposed by the research staff. Parent responses will be read and coded. We will use the constant comparative method in which data is compared iteratively. Themes will be identified attending to factors such as repetition, emphasis and connections. We will compare themes across demographic characteristics as well as severity, clinical diagnosis of ASD, and setting. 

Conclusions:  The results of this study will provide important information about how parental concerns relate to autism screening and evaluation outcome among traditionally underserved young children. This information may then help to better train healthcare providers to recognize and solicit parental concerns, as well as to inform autism awareness campaigns aimed at low income, racial or ethnic minority or non-English-speaking communities.