Making Space for Autistic People with “Complex Support Needs”: Recommendations for Inclusive Research Practices
Diana W. Tan, Grant Blasko, Teresa Girolamo, Aimee Grant, Holly E.A. Sutherland, Jacalyn Gowin Ryan, Steven K. Kapp, Vikram K. JaswalThe neurodiversity movement has reshaped how autism is conceptualized, represented, and increasingly researched. Yet neurodiversity discourse and participatory research disproportionately exclude Autistic people with complex support needs (CSN), including but not limited to those who are minimally or nonspeaking, have co-occurring intellectual disability, use augmentative and alternative communication, and/or require intensive daily support. In this perspective, we clarify the relationship between the neurodiversity paradigm and Autistic people with CSN, addressing persistent misconceptions that the movement overlooks disability or minimizes support needs. Drawing on theoretical analysis, empirical evidence, and recent research experiences, we argue that when applied rigorously, the neurodiversity paradigm offers a powerful framework for advancing autonomy, dignity, and inclusion for Autistic people with CSN. We examine structural, attitudinal, and methodological barriers that limit participation, as well as highlight studies demonstrating that inclusive, coproduced research with Autistic people with CSN is feasible and beneficial. Finally, we offer four actionable recommendations for researchers to meaningfully include Autistic people with CSN throughout the research process. Ensuring that participatory approaches include Autistic people with CSN is both ethically imperative and essential for producing rigorous, transferable, and socially just autism research.
Community Brief
Why is this topic important?
Autistic people with complex support needs (CSN)—including but not limited to those who use little or no spoken language, use augmentative and alternative communication (AAC) methods, have a co-occurring intellectual disability and/or require intensive daily support—are often excluded from autism research and decision-making. Consequently, their lived experiences remain underrepresented in research.
What is the purpose of this article?
This article explains how the neurodiversity paradigm applies to Autistic people with CSN and addresses the misconception that the paradigm only represents Autistic people with lower or less visible support needs. The authors argue for greater inclusion of Autistic people with CSN in autism research and offer practical recommendations for making research more accessible and participatory.
What personal or professional perspectives do the authors bring to this topic?
The authors include Autistic researchers, including two AAC users (one full-time), family members of people with CSN, and one non-autistic researcher with extensive experience collaborating with Autistic people with CSN. Together, they bring lived experience; clinical and research expertise; and a commitment to conducting autism research to honor the autonomy, dignity, and rights of Autistic people.
What is already known about this topic?
The neurodiversity movement has transformed our understanding of autism by emphasizing acceptance, rights, and inclusion through societal change including access to support. Yet Autistic people with CSN are still frequently excluded from research as participants, collaborators, or academics. One assumption is that the neurodiversity paradigm does not apply to people with CSN, but some influential neurodiversity advocates themselves have CSN. Recent examples from research show that Autistic people with CSN can participate meaningfully when studies use appropriate communication supports, accommodations, and flexible methods.
What do the authors recommend?
The authors outline four key recommendations to support meaningful inclusion of Autistic people with CSN in research.
Hold a fundamental belief in the value of inclusion: Researchers should presume participants’ competence when designing research, recognize that all Autistic people have experiences and insight to contribute, and prioritize the perspectives of Autistic people with CSN above those of researchers, family members or supporters, and practitioners. Implement structural support while working flexibly and differently: Researchers should embed support across all stages of research, work flexibly, and apply Universal Design for Learning principles to ensure accessibility. Build relationship as the foundation of participation: Researchers should engage with Autistic partners as whole people and approach communication differences with attention and care. Make continuous reflection and improvement as part of the process: Researchers should use feedback to strengthen inclusion.
How will these recommendations help Autistic adults now or in the future?
Implementing these recommendations will help ensure that research reflects the experiences and priorities of Autistic adults with CSN, leading to more accurate findings that inform support, communication access, and policy decisions. Over time, these practices serve to reduce long-standing exclusions and may help shift our understanding of autism; recognizing Autistic adults with CSN as active, valuable contributors in research is a vital first step.