Locked Out and Talked Over: When Autism Research Excludes Autistic Voices
Recently, I came across an academic article published in the Journal of Autism and Developmental Disorders by Yanchao Li, Yuwei Jiang and Xinming He. The title stopped me cold:
"Are autistic individuals more confused when making choices? Choice architecture interventions to reduce choice confusion among individuals with autism" (Springer, 2024)
Even before reading a word of the study, the framing alone felt offensive â and for good reason. The title implies autistic people are inherently confused, as if âconfusionâ is a built-in trait rather than a response to poorly designed systems. Spoiler: weâre not confused. Weâre navigating environments that werenât built with us in mind.
Whatâs Wrong With This Kind of Framing?
Letâs start with the obvious: language matters. Describing autistic people as âmore confusedâ than neurotypicals reinforces tired stereotypes that pathologize difference instead of appreciating neurodiversity.
This study â based on its abstract â seems to treat âchoice confusionâ as a kind of deficit or cognitive flaw. It doesn't ask âHow can systems be made more inclusive?â It asks âHow much more confused are autistic people?â The focus is not on accessibility but on comparison and diagnosis.
And Then⌠the Paywall
If the title didnât make it clear enough that this wasnât written for autistic people, the paywall sealed the deal.
This is a paper about autistic people â
written without us
published without our input
and locked so we canât even read it.
When marginalized groups are excluded from both the research process and access to its results, thatâs not just bad science â itâs unethical.
Research About Us Needs to Include Us
Weâre not research subjects or diagnostic puzzles. Weâre people. Many of us are academics, professionals, creators and decision-makers in our own right. And we deserve:
- Respectful language
- Representation in research design
- Access to whatâs written about us
If your work depends on us then you have a responsibility to include us.
Want to Study âChoice Confusionâ? Hereâs a ThoughtâŚ
Start by asking:
- How are choice environments overwhelming because of sensory overload, unclear labeling or inaccessible formats?
- How can inclusive design support all cognitive styles?
- What do autistic people actually experience and prefer in choice-making?
Spoiler again: we can tell you. Just ask.
Article citation:
Li, Y., Jiang, Y. & He, X. (2024). Are autistic individuals more confused when making choices? Choice architecture interventions to reduce choice confusion among individuals with autism. Journal of Autism and Developmental Disorders. Springer. Read it here (if you can access it)