Autism Research Consortium - Problem: There is a growing recognition of the unmet needs of children with autism and other neurodevelopmental disabilities with limited communication and language. These children may be minimally speaking and often have high support needs. We have limited information on effective interventions since they are routinely left out of research studies, and their community care may be fragmented or non-existent. Autistic children and adolescents may also have unmet needs as related to effective communication and fluent conversations with others. Being able to communicate one’s own needs is critical for community participation, self-determination and quality of life; thus, communication supports are of high priority to develop and evaluate for individuals with autism and other NDDs. Goals/Objectives: The primary goal of this proposed consortium is to advance the field with respect to understanding and addressing the communication and language needs of autistic and other NDD individuals. Objectives 1-3: Develop a multi-site, nationally representative collaborative consortium using Community-Partnered Participatory Research (CPPR) methods and expand our existing efforts in academic-community partnerships to improve the reach and relevance of effective interventions. Objectives 4 6: Recruit participants from our broadly representative communities and conduct research using CPPR and implementation science methods. Approach will involve new data collection as well as mining existing data sets with new questions. Objectives 7-11: Widely disseminate information, via presentations, publications, community presence, dedicated websites, and social media outlets. Disseminate research findings locally and nationally through workgroups and annual conferences; leverage Consortium capacity to obtain additional extramural funding. Objective 12-13: Expand mentoring of early career and new investigators to the field. Proposed Activities and Target Populations: Using CPPR and implementation science methods, we will expand partnerships with local schools, community health centers and community-based organizations to identify and respond to stakeholder priorities. We will work with our communities to test novel intervention and implementation strategies aimed at improving communication outcomes of autistic individuals. We will access existing data sets to mine further information relevant to the communication needs of autistic individuals. Coordination: To extend our previous collaborations and build an infrastructure on communication science that includes our community partnerships. We will utilize our expert consultants on communication science and novel methodological approaches to enrich our Consortium research and disseminate information to the broader field through scheduled meetings and webinars. The Consortium team comprises leaders in implementation science, communication assessment and interventions, community health access, CPPR methods, clinical and lived experiences, and developmental knowledge across the lifespan. Products: Further refinement of technology tools for communication of individuals with high support needs, resource guidelines, and publications and webinars for supporting researchers and community members in evidence-based interventions/supports across the life span. Evaluation: We will employ quantitative and qualitative implementation science methods to test the effectiveness, reach, and sustainment of evidence-based interventions in our broadly representative community settings. We will also collaborate with HRSA evaluation team on critical metrics of effectiveness. Keywords: Autism, Neurodevelopmental Disabilities, Communication, Language Interventions, Minimally Speaking, High Support Needs, Information Technology.
