Nothing Without Us (Except This Time)
If you work in autism research today, you’ve heard the phrase:
#NothingAboutUsWithoutUs.
It’s no longer a fringe slogan. It’s on conference slides. In grant applications. Even in the introductions of peer-reviewed papers.
That’s progress. Or at least, the beginning of it.
But here’s the irony: one recent strengths-based study by Dr. Megan Cherewickat at the University of Colorado's Department of Community & Behavioral Health in the Colorado School of Public Health — thoughtful, affirming, thorough — opens with this very ethos. It names the need for a shift away from deficits. It outlines how inclusion improves outcomes. It even acknowledges, in a final paragraph, that no autistic individuals were involved in the analysis.
They knew. They named it.
And still… we weren’t there.
I don’t write this to shame the authors. Their work moves in the right direction — and I suspect they’d welcome autistic collaborators in the next phase. But it’s a telling moment: even a paper about including autistic strengths was missing our voice.
#NothingAboutUsWithoutUs isn’t a purity test. It’s a compass. And when you admit you’re off-course but keep walking anyway — something important is lost.
We’ve all been part of systems that lag behind our values. Academia, especially, doesn’t pivot quickly. Timelines are tight. Budgets are fixed. Structures reward citations, not collaboration. And they definitely don’t make it easy for autistic readers — or the public — to access full studies and verify for ourselves who was involved and how.
I've looked for subsequent autism studies by Megan Cherewick that have autistic participants — but have not found any (see my previous paragraph about the difficulty of the ivory tower being locked behind a paywall). If she has gone on to include autistic co-researchers in later work — we’d welcome seeing it. Not to score points but to celebrate movement. To know this field can shift not just in theory, but in authorship.
To those who are trying: thank you. To those who know better but haven’t done better yet: we’re still willing to join you.
But don’t just quote the slogan. Live it.