Parent-Nominated Symptoms as an Outcome Measure in Autism Intervention Research Vanessa Dabel Mentor: David S. Mandell, ScD

Project Overview Autism Instructional Methods Study (AIMS) ▫3-hour battery of testing every September and June Apply Parent-Nominated Symptoms strategy to a subset of subjects ▫Students who are flooring

Hypothesis The parent-nominated symptoms measurement will be correlated with clinician ratings of improvement and will provide an ecologically valid, statistically reliable outcome measure for behavioral intervention trials

What are parent-nominated symptoms? Symptoms that parents and caregivers identify in their children that are of most concern to them

Significance It is difficult to measure symptoms and changes in symptoms over time for a group of children with ASD using a single measure ▫Standardized scales may fail to reflect real change important to the individual family (Arnold et al., 2003) Addition of parent-targeted symptoms questionnaire in pharmacological studies proved to be successful (Arnold et al., 2003) Ecological validity

Aims To seek information from parents for which clinicians may rate in order to track the changes in Parent-Nominated Symptoms ▫to turn qualitative data into a quantitative measure To test the feasibility of refining and replicating this strategy in a behavioral study

Methods Conduct phone interviews in August and November 2009 ▫Questions focused on communicative and social impairments as well as maladaptive behaviors  “How often?” “How long each time?” “How many hours a day?” “How does it interfere with daily activities?” Select group of clinicians to rate the symptoms ▫Qualitative data  Quantitative measure ▫Examine whether there is change over time

My Role Drafting documents to be submitted for IRB approval ▫Project Description, Verbal Consent Form, Phone Script Responsible for conducting phone interviews with parents and caregivers ▫Verbal consent Collecting and analyzing data

Lessons Learned Becoming more familiar with the IRB process Gaining more experience in conducting autism research ▫Better understanding of the measures that are used Exploring research interests as they pertain to my professional development

Acknowledgements Mentor David S. Mandell, ScD AIMS Team Center for Autism Research (CAR) SUMR Scholars Joanne Levy and LDI Thank you! Any questions or comments?