Adult Autism Research Priorities and Conceptualization in Computing Research: Invitation to Co-lead with Autistic Adults
Dafne Zuleima Morgado Ramirez, Giulia Barbareschi, Cathy Holloway · 2024 · ACM Transactions on Computer-Human Interaction · doi:10.1145/3635148
Summary
This extensive literature review critically examines computing research involving autistic adults, analyzing 44 papers from the ACM Guide to Computing Literature published between 2007 and 2022. The work is distinctive in that the first author is autistic, bringing lived experience to the analysis. The review addresses four questions: what research priorities autistic adults and their allies have set, how autistic adults participate in computing research, how autism is conceptualized in the literature, and what technologies have been designed and for what purposes. The authors also conducted a scoping synthesis of broader adult autism research priorities from autism journals and community sources, identifying 117 priorities organized into 24 themes across 5 categories: activities and participation, services and systems, interpersonal interactions and relationships, communication, and life experiences. The paper provides extensive background on disability paradigms applied to autism (medical, social, and human rights models), the concept of neurodiversity and complementary cognition, the double empathy problem, and key dimensions of autistic adult lived experience including late diagnosis, mental health, gender and sexuality, menstruation and menopause, aging, and employment. The methodology section is notable for its transparent positionality statements from all three authors about their relationship to disability and autism.
Key findings
The review reveals deeply troubling patterns in how computing research treats autistic adults. Geographically, research recruits almost exclusively from the USA and Europe, with zero representation from the Eastern Mediterranean, South-East Asia, or Africa. Demographically, participants are overwhelmingly male and aged 20-30, with no study explicitly recruiting autistic adults over 60. More than half (54%) of the papers did not address any autism research priority set by autistic adults and their allies. Two-thirds (66.6%) of the 24 research priority themes were completely unresearched, including sensory preferences, social skills, activism and advocacy, distress and burnout, aging, relationships, sexuality, the criminal justice system, and identity. The conceptualization of autism was predominantly medical/deficit-based: 77% of papers used a medical or deficit model, only 1 paper used a social model, only 1 referenced the neurodiversity paradigm, and no paper referenced complementary cognition theory. The majority of papers (59%) did not consider the double empathy problem at all. Participation levels were alarmingly low: 48% of studies were non-participatory, 77% did not compensate participants, 66% did not acknowledge participants, 70% did not report ethical approval, and only 7% offered authentic partnership-level participation. The authors found dehumanizing language throughout the corpus, describing autistic adults as having "abnormal" traits, being "mysterious," "peculiar," "a burden," and "people suffering from autism."
Relevance
This paper is essential reading for anyone designing technology for or conducting research with autistic adults. Its core message — that computing research has largely ignored the priorities set by autistic adults themselves while perpetuating deficit-based, medicalizing narratives — has direct implications for how accessibility practitioners approach neurodivergent users. The synthesized list of 117 research priorities across 24 themes provides a concrete framework for aligning technology development with what actually matters to autistic adults. For practitioners, the paper underscores the importance of identity-first language ("autistic person" rather than "person with autism" in European contexts), understanding the double empathy problem (communication difficulties are bidirectional, not solely the autistic person's deficit), and adopting truly participatory methods where autistic adults are partners, not subjects. The honest positionality statements model how researchers can transparently address their relationship to the communities they study. The paper's limitation is its restriction to the ACM Digital Library, which may miss important work published in autism-specific journals.
Tags: autism · neurodiversity · adult autism · research priorities · disability models · double empathy problem · participatory research · ableism · critical disability studies · identity-first language
Standards referenced: UNCRPD · ICF · DSM-5