Research Priorities in Autism From a Clinical Setting: Voices of Autistic Adults and Families of Children and Adolescents With Autism Spectrum Disorder.
TL;DR
It is demonstrated that participatory research can be conducted within a clinical setting, integrating the voices of autistic people and their families into the health care system itself, and underscores the need for a national research agenda grounded in lived experience and focused on improving everyday well-being.
Abstract
This study explored the research priorities of autistic adults and families of children and adolescents with autism spectrum disorder within a hospital-based diagnostic service in Spain. Using a mixed-methods design with interviews and a survey aligned with the Spanish Autism Strategic Plan (2023-2027), 42 participants shared what research they consider most relevant. Both groups prioritized applied research that improves daily life-communication, sensory processing, flexibility, mental health, education, employment, and quality of life. Families also emphasized biomedical topics such as genetics, microbiota, and pharmacological treatments, noting that etiological research should enhance well-being rather than aim to "cure" autism. Autistic adults highlighted the need for more accurate and timely diagnosis, especially for women and late-diagnosed adults, as well as research on masking, autonomy, workplace adaptations, and independent living. Participants perceived limited real-world impact from current autism research due to poor dissemination and scarce practical application, yet interest in future involvement was high, with many willing to collaborate or act as co-researchers. The study shows that participatory research can be successfully embedded in clinical settings and underscores the need for a national research agenda grounded in lived experience and focused on improving everyday well-being.Lay AbstractThis study aimed to identify which research topics are most important to autistic adults and to families of children and adolescents with autism spectrum disorder in Spain. Participants were also asked for their views on publicly funded autism research projects from 2020 to 2023 in order to assess whether funding priorities align with what they consider most relevant. A total of 42 people took part (23 family members and 19 autistic adults), all invited through a hospital-based autism diagnostic program in Barcelona. Data were collected through interviews and a survey based on the Spanish Strategic Plan for Autism (2023-2027). Both families and autistic adults agreed that the most useful research is that which improves daily life, particularly in areas such as communication, flexibility, sensory processing, education, employment, mental health, and quality of life. Studies on the causes or genetics of autism were also seen as relevant, provided their goal is to improve the quality of life of autistic people and their families, rather than the eradication of autism. Families placed greater importance on professional training and good health care practices, whereas autistic adults emphasized the need for research on independence, aging, and sensory experiences. Nearly all participants had previously taken part in research and showed strong interest in continuing to do so. Many autistic adults expressed a desire to participate not only as subjects but also as collaborators or co-researchers. This study demonstrates that participatory research can be conducted within a clinical setting, integrating the voices of autistic people and their families into the health care system itself. This approach helps build a more inclusive, respectful, and practically useful autism science.