Promoting Interdisciplinary and Participatory Autism Research.

Abstract

The Autism Intervention Research Network on Physical Health (AIR-P) has a strong emphasis on cultivating the next generation of researchers committed to promoting the health and well-being of autistic individuals across the lifespan. As we begin our roles as scientists on this ambitious project, we are confronted with the tension between aspects of research culture that are both progressive and dynamic and outdated and static, particularly in the autism field. As we reflect on the current state of the field, we increasingly recognize the importance of conducting interdisciplinary research and using participatory methods to ensure that our research will enhance health outcomes for autistic individuals.Throughout our short careers, it has become readily apparent that the research community recognizes, at least in name, the value of working on diverse interdisciplinary teams, particularly with respect to addressing complex public health issues.1 We are acutely aware, however, of traditional research culture wherein mentors have historically encouraged trainees to master a single focal area and protect it as their own.2 In effect, we continuously experience conflicting messages. On one hand, we are urged to identify a narrow area of expertise, pursue it with fervor, and work to establish our independence as researchers. On the other hand, our experience in autism research requires us to approach complex problems from multiple angles, cultivate a vast array of methodological and theoretical tools, and cull together diverse teams.We believe that an interdisciplinary approach to research is an asset to early-career investigators’ professional development and to the field. We urge mentors to encourage early-career investigators to learn from peers in other fields, even those that do not, at face value, appear complementary. In practice, autism researchers would collaborate with physicians and clinicians, social justice advocates, educators, and other leaders and stakeholders. We believe that these collaborations will promote out-of-the-box thinking and dismantle antiquated models that do not further the development of innovative, health-promoting research for autistic individuals.Researchers underscore the critical role of participatory methods for autistic individuals.3 However, a pervasive undervaluing of the role of lived experiences still exists in shaping research questions and methodologies, which translates into an additive approach wherein the stakeholder perspective is layered on top of the empirical research study rather than sought out at the beginning to inform the research process in a meaningful way. When participatory methodologies are secondary to the research study, researchers often position those with lived experience in tokenistic roles that do an injustice to their perspectives in the research process.One of the earliest developments within the AIR-P is the Autistic Researcher Review Board. This group of international autistic researchers is tasked with reviewing all studies that will be supported within the AIR-P and developing collaborative theoretical articles and empirical research studies that will advance the field. As the neurodiversity movement continues to gain traction and individuals with neurodivergence continue to serve as self-advocates and assume prominent leadership positions, we hope that participatory research becomes the status quo in autism research.We call on our peers, early-career investigators, as well as colleagues steeped in traditional research culture, to join us in placing a precedent on moving the field of autism research forward through interdisciplinary and participatory approaches. We look forward to collaborating with novices and experts across disciplines in developing and implementing research that is directly responsive to lived experiences in an effort to address our broader goal of having a robust impact on the health and well-being of autistic individuals across the lifespan.