DESCRIPTION (provided by applicant): This application for an NIMH Mentored Research Scientist Career Development (K01) award seeks support to develop a program of research related to understanding the pathways and processes by which children with autism are screened, diagnosed and enter treatment. As part of the education plan, the PI will: 1) Increase his understanding of the presentation, diagnosis of and treatments for autism; 2) Increase his knowledge of different systems through which services for children with autism are provided; 3) Learn about the epistemologies that informs professionals' and families' understanding of autism by promoting interaction with families of children with autism and the professionals who come into contact with them; 4) Improve his knowledge of related fields such as neuropsychology, decision-making and communication; 5) Gain additional research skills to collect and analyze primary data about complex, multilayered issues; and 6) Acquire the skills associated with the development of interventions.
A three-phase study that builds upon a federally funded prevalence study is proposed as part of this career development award. In Phase I, children with autism will be identified using medical and school records. Information from chart reviews of sources will be used to identify factors associated with the age at which children with autism are diagnosed. Phase II will sample families based on factors found in Phase I to be associated with age of diagnosis. Through semi-structured interviews, these families will be asked to describe their experiences related to their children's autism, what precipitated their concerns, and experiences related to getting screened, diagnosed and treated. Models and methods developed in Phases I and II will inform data collection efforts in Phase III. Phase III will enroll families whose children have recently screened positive for autism. Both quantitative and qualitative data will be collected from families who will be interviewed near the time their child is screened. Parents of children who are subsequently diagnosed with autism will be interviewed again at that time, and also 12 months later. Data will be gathered on stress, sources of support, and their decisions about whether and how to engage in treatment. In addition to acting as a pilot for the methods and instruments used in Phase III, Phases I and II will help the PI develop skills associated with mixed methods studies that will be applied to prospective data collection, analysis and interpretation.
It is anticipated that as a result of this research, interventions will be developed that decrease the age at which children with autism receive the diagnosis and enter treatment. In addition, the results from this study may inform our understanding of factors affecting the early and appropriate diagnosis of other psychiatric and developmental disorders of childhood, leading to the development of broader interventions to expedite appropriate diagnosis.