How to Develop An Effective Intervention through the Participatory Research Process: A Case Example in An Executive Functioning Intervention in High-Functioning Autism Spectrum Disorders

Background: Cognitive and behavioral inflexibility is a commonly observed associated feature of high-functioning autism spectrum disorders (ASD). Interventions aimed at improving flexibility are limited and not commonly implemented in home and school settings. We have developed a school-based intervention to improve flexibility in students with ASD, the Enhanced Flexibility Intervention (EFI). Our team set out to develop this new intervention using a participatory process informed by a theoretical framework that emphasizes real world interventions to remediate executive function (EF) deficits in ASD through: cognitive training, self regulatory scripts, and faded practice and cueing in home and classroom settings.

Objectives: 1) Apply the principles of the participatory framework process of intervention development to ASD
2) Develop an innovative classroom intervention targeting flexibility in children with ASD
3) Evaluate the feasibility of the intervention by examining preliminary pilot data

Methods: This project represents the partnership among key stakeholders including clinical researchers, special educators, parents of children with ASD and individuals with ASD to develop an intervention that addresses the core EF component of flexible thinking, while also building other, supporting EF skills.  We developed the EFI manual and materials through a participatory research framework (including focus groups, needs assessments, classroom observations, intensive collaboration with the Ivymount School Model Asperger Program and feedback from participants, parents and interventionists). We also conducted a preliminary test of the intervention with 16 children comparing the change in multi-modal assessments from pre- to post-intervention.

Results: The participatory process defined the structure of the intervention, how the intervention was delivered during the school day, what teaching methods should be used, and streamlined the lessons.  The resulting intervention is feasible and acceptable to participants (with an over 90% completion rate), proving the achievability of using an intensive participatory process, including adults, adolescents and children with ASD to develop a new intervention.  We will present the resulting EFI manual, with a focus on how the participatory process shaped the development of the manual. We will also present the results of a preliminary test of the intervention with 16 children comparing the change in multi-modal assessments from pre- to post-intervention.  Post-intervention data, including classroom observations, questionnaires, and a new measure assessing EF, especially flexibility, in a socially-demanding context (observing groups of four children working together to complete tasks) will be completed in January to March 2010 and will available for presentation at the conference.

Conclusions: Our approach to developing this intervention was an innovative combination of a participatory process and a theory-driven method based on our knowledge of the complex EF deficits and effective intervention techniques in ASD.  Because EF deficits are primarily expressed, and best assessed, in real-world settings, such as classroom, home and social settings, it was essential that we test and modify interventions in a real-world setting and that the intervention be administrable by teachers and other school personnel; thus it was an ideal intervention to develop with a participatory model.   This project has implications for future ASD intervention development using a participatory process.