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Editorial whose lead author has received AIMS-2-TRIALS funding mentions participatory research once—under “Shaping the future.” In 2025, that’s insufficient: participatory methods must be embedded in current studies, especially on interventions & therapeutic outcomes. doi.org/10.3389/frch...
5/6 First task: verify whether each publication explicitly reports AIMS-2-TRIALS support (quick, form-based).
Even limited help would be fantastic — tracing autistic participation across ~350 studies is a collective effort, and your contribution moves us forward.
Discord: discord.gg/3NhpBrxm
5/6 With ~€115M total funding (incl. ~€55M from the EU) and hundreds of papers, plus a stated commitment to involving autistic people and carers across the project, it’s ideal for examining how participation is described and reported.
4/6 We apply the framework to peer-reviewed outputs that acknowledge AIMS-2-TRIALS funding. Launched 2018–2026, it’s a large European biomedical programme uniting multiple groups to study autism across the lifespan.
3/6 This evaluation is fully independent of the consortium, organized by volunteers via Discord. A protocol draft and a proposed timeline are available for consultation.
Protocol draft: go.cedricdetienne.be/1
2/6 Our first case study examines peer-reviewed publications supported by AIMS-2-TRIALS (~350+). We’ll assess how participatory practices are reported using a structured GRIPP2-LF–based framework.
1/6 The citizen-led project Autistic Participatory Metrics is officially underway — and its viability depends on volunteer participation — we need you.
github.com/cedric-detie...
I should clarify that the article would, of course, not be made available on Autidacts. However, it would allow us to build the interactive bibliography, which is one of Autidacts.org 's strengths.
Hello, Autidacts.org is interested in having a private copy to add your article to its database. (sorry, I can't seem to send a private message)
"This suggests that camouflaging is not always responsive to the mechanisms targeted in traditional CBT and emphasizes the importance of contextual, identity-affirming approaches in intervention design."
So why persist in applying traditional CBT to autistic people?
The expression "**person-centered** quantitative phenotypic analysis" sounds impressive but is ultimately rather empty.
4/5
Of course, this analysis is based on what is reported in the studies. But given how little information is publicly available about the actual participation of autistic people in the consortium, it's probably better than nothing.
3/5
Rather than relying on institutional branding, this project aims to ground evaluation in actual evidence of co-production and participation.
2/5
The focus will be on identifying concrete indicators of participation within the studies — to assess whether claims that autistic individuals are “equal partners” in AIMS-2-TRIALS (Loth 2023, doi:10.3389/fpsyt.2023.1085445) hold up under scrutiny.
1/1
You might find this interesting. A new citizen-led research initiative is launching with the specific goal of analyzing all peer-reviewed publications funded by the AIMS-2-TRIALS consortium.
All feedback and suggestions are welcome — especially critical feedback on the methodological approach.
github.com/cedric-detie...
Using a different methodology, the (nascent) citizen project Autistic Participation Metrics will also try “to look into this further, and better.”
The project is led by people who are “skeptical” (as you suggest), yet supportive of the efforts made by autistic people within A2T.
Regarding "autism research", refer them to the list of autistic researchers whose work is highlighted on Autidacts.org (both the list and the featured work are evolving...)
autidacts.org/en/pg/list-a...
Thank you for your message. I posted a short note following the announcement of your article's publication.
bsky.app/profile/tere...
Just a note: the “4 % of researchers (...) formally diagnosed autistic” figure comes from the survey sample (under half of consortium members responded). Autistic researchers may have been more motivated to take part, so the true proportion across the whole consortium could differ.
Post 5 / 5
I want to emphasize that my very direct response should in no way downplay the effort you put into tackling this very sensitive issue.
Post 4 / 5
We appreciate your approach, though this disagreement over the numbers may undercut the strength of your conclusion: “The 4% formal diagnosis rate in the consortium is higher than the worldwide”
Post 3 / 5
Only 124 researchers filled out the questionnaire, yet the pre-print notes “239 active contributors” in the consortium. So the quoted 4 % is five autistic respondents out of 124—but against the full 239-person team that’s closer to 2 %, a very different picture.
Post 2 / 5
Example: the published paper says “The 4% formal diagnosis rate in the consortium (...)” Yet the pre-print stated “autistic researchers were present in this sample (4 % formally diagnosed, …).” Two very different signals.
Post 1 / 5
Thanks for this brave piece of research. Unfortunately, key details in the pre-print were dropped in the final version—losing that extra context feels like a step back.
📂 Methods, tools, and results are shared transparently on GitHub, in an open collaboration model — anyone can suggest improvements:
github.com/cedric-detie...
💬 Discussions and coordination on Discord:
discord.gg/9uk3cCyR9e
The structure is still evolving — participation is welcome.
4/4
📊 First case study: AIMS-2-TRIALS — the largest autism research consortium in Europe.
Autistic Participatory Metrics begins by analysing over three published studies from this project, focusing on how autistic participation is described and implemented.
#AIMS-2-TRIALS
3/4
🔍 Goal: to develop open-source methodology and tools to evaluate how research teams and consortiums include autistic people, using clear indicators of participatory practices.
The analysis will be based on published studies.
2/4