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...

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...

📢 Call for contributors Autistic Participatory Metrics — A new citizen-led initiative to assess to what extent autistic participation is included in autism research projects. Looking for autistic people, researchers, coders, and allies to get involved. #Autism #OpenScience #ParticipatoryResearch 1/4

Regarding the "AIMS-2-TRIALS Autism Research": "Neurodivergent researchers were found to be under-represented in senior and clinical roles. The significant association between neuro-identity and career reinforce the notion that career progression may be influenced by neurodivergent identity."

"approaches focused on high-quality clinical evidence (e.g. defined as meta-analysis of randomized controlled trials) may conflict with more pragmatic understandings of relevant knowledge including clinical expertise, patient experiences, and real-world data" ojrd.biomedcentral.com/articles/10....

"Non-speaking #autistic people should be involved in the design and conduct of research in which they are included as participants." Interactive bibliography (20% of references include at least one openly autistic author): autidacts.org/en/pg-ref/1601

"organisations do not always explicitly state the bounds of the representational role in #autism advocacy" pubmed.ncbi.nlm.nih.gov/40130705/

New article out on @theconversation.com on why many Autistic adults don't like puzzle pieces symbols being used to represent us: theconversation.com/why-the-auti... #Autism #ActuallyAutistic

A new review explores 'mirror neurons' approaches in neurorehabilitation for #autistic people. But imagine if autistic people were the majority — would we target non-autistic neurology for **rehabilitation** ? #Autism #Research onlinelibrary.wiley.com/doi/full/10....

"parent satisfaction was highly reported in PEERS studies (...), suggesting the undoubtedly success of intervention in meeting the needs of parents raising an adolescent with ASD" link.springer.com/article/10.1... Autistic adolescents’ satisfaction was not reported. And what about harm analysis?

"Future research should explore whether restricted interests themselves function as risk factors or if they are markers of broader emotional dysregulation associated with depression and, in particular, with suicidal ideation." www.sciencedirect.com/science/arti... Hear autistics, expand ideas...

A study published on March 26, 2025 concludes that: "(...) repetitive behaviours of autistic students facilitate their uptake of social communication opportunities within online multiplayer gaming contexts." nasenjournals.onlinelibrary.wiley.com/doi/10.1111/...

A study on “What Factors Have Been the Most Helpful and Harmful and When?” link.springer.com/article/10.1... — conducted without any autistic involvement at any level (design, coding, interpretation…). 🤷‍♂️ #NothingAboutUsWithoutUs

"individuals with lived experience might express opposing views" "dissensus should be actively encouraged and nurtured, not only among researchers with lived experience, but also as an asset among all partners involved in science" www.sciencedirect.com/science/arti... on dissensus, autism-relevant

1/2 🌟 New on Autidacts.org: You can now see the proportion of autistic authors cited in the bibliographies of studies shared on the site! The data will grow richer as more authors are added, but it’s a great start! 📚✨ For example: autidacts.org/en/pg-ref/32

On December 14, 2009 — 15 years ago — autistic researcher Scott Michael Robertson urged: "Shifting Research and Professional Focuses onto Real-Life Challenges [of Autistic People]". ** Thank you, Scott Michael Robertson ** More information: autidacts.org/en/pg-ref/1298 #AutRes #Neurodiversity

"The discomfort with status hierarchies discussed in #autistic writing has been ignored by researchers." (C. Caldwell-Harris & A. Schwartz, 2024) More details on this reference here 👇 autidacts.org/en/pg-ref/1296 #AutRes

"Listening to and reading about the frequency of sexual and gender-based violence against autistic women, I came to realise that there may be a need for trauma evaluation in autism diagnostic protocols and trauma-informed support." (K. Callander, 2023). More details: 👇 autidacts.org/en/pg-ref/1286

"Educators, and universities at large, therefore have to take part of the responsibility if academic practices effectively (even if unintentionally) exclude students with #autism who have a different structure of motivation but are otherwise good students." (Boven, 2018) autidacts.org/en/pg-ref/1275

"Similar to autistic doctors and artistic performers, [autistic veterinary surgeons] frequently cited a lack of neurodiversity awareness among colleagues and microaggressions (...) or discriminatory behaviour (...)." (K. Pickles et al.) More details: 👇 autidacts.org/en/pg-ref/1268 #AutRes

From the abstract, two issues arise: one terminological—"neurodiverse populations" instead of "neurodivergent"; and the other ethical—referring to non-autistic individuals as a "healthy sample", really? www.nature.com/articles/s41...

Nearly 15 years ago: "We hope that our work not only improves the lives of autistic adults, but also reinforces the idea that autism research should be conducted with, not just about, autistic people." (C. Nicolaidis et al., 2011). More : 👇 autidacts.org/en/pg-ref/1253 #AutRes #ParticipatoryResearch

"researchers at all stages of their careers reported experiencing considerable challenges in incorporating meaningful participatory research practices within their work." (H. Pickard et al., 2022). Interactive bibliography here 👇 autidacts.org/en/pg-ref/1199 #AutRes #ParticipativeResearch

"Participants’ narratives around disclosure highlighted the unique challenges faced by #autistic mothers, such as concerns over being perceived as a 'fit parent' or even 'having their children removed'." (Ashton Ferguson et al., nov. 2024) More details here 👇 autidacts.org/en/pg-ref/1192

"#Autistic individuals may feel more comfortable consenting to open-access use of their data if guidelines gave individuals the option to flag which organisation their data does/does not contribute towards (...)." (M. Sader et al., Nov 2024) More details here 👇 autidacts.org/en/pg-ref/1188 #AutRes

"In this review, we highlighted that the concept of a gene for #autism is obviously a reductionist view and a source of confusion and exclusion." (C. Leblond et al., Nov 2024). Explore the interactive bibliography here: 👇 autidacts.org/en/pg-ref/1154 #AutRes #Genetics #Science

"we call on universities and funding bodies to increase the scope for flexibility in PhD projects and the available funding for community involvement" (Elisa Genovesi et al., Nov 2024). More details on this reference here 👇 autidacts.org/en/pg-ref/1110 #AutRes

I’d love to see a language and research shift from "administering evidence-based intervention" to "using identifying affirming, socially validated practices" with social validation happening through community led participatory research. #AutRes #AcademicSky

It is possible to make custom feeds here, so here's one for autism researchers. It takes the starter packs from the wonderful @lauramaycrane.bsky.social and tries to pull out alerts for new papers to keep in one place 🤞 bsky.app/profile/did:...

"As #autistic people have moved into #autism research, standard ideas of its goals have been criticised, especially those tied to idealised notions of normalcy." (D. Milton, 2020). More details here 👇 autidacts.org/en/pg-ref/1030 #AutRes

"Adopting a co-designed approach to discovery research can inform allies of the autistic community on better support for sensory processing differences, (..) and enable autistic people to participate with the world as they prefer." (Bec Poulsen et al., 2024) More infos 👇 autidacts.org/en/pg-ref/1038

"Participants rejected the idea that suffering was inherent to autism (...). Instead, participants described autistic suffering as a product of not being neurotypical in a world that demands it, resulting in isolation, discrimination and victimisation." (M.Botha, 2022). autidacts.org/en/pg-ref/1010

🧵Autistic Representation in Autism Research Historically, autism research has been conducted ON autistic people rather than with autistic people. In recent years, there has been an increase in research conducted by autistics for autistics. #autres #autsky #autism #research #academia #phd #phdsky

"Although the autistic participants in our study did not request a space without nonautistic people, they requested a space without health professionals (service providers), who are almost always nonautistic." (A. Valderrama et al. 2022). More details 👇 autidacts.org/en/pg-ref/1023 #AutRes

Registered: in autism intervention research, "What are autism researchers’ rationales for targeting the social skills of autistic adolescents..." & "What autistic communities’ perspectives and priorities, if at all, are taken into account" etc www.crd.york.ac.uk/prospero/dis... systematic review

"Although many entrenched barriers to success for autistic students and staff remain, literature highlights some opportunities for optimism, and the powerful role that autistic advocates can play." (C. Horlin et al., Nov 2024). More details 👇 autidacts.org/en/pg-ref/1003 #AutismAdvocacy #Inclusion

Seeking support to preserve Michelle Dawson's 15-year impact on autism research. Help us export her 17.7k posts from X/Twitter into an open format for future access. Read more here: bsky.app/profile/auti... #AutRes #Research #MichelleDawson #Autism #AutismHistory #ActuallyAutistic #Autistic

Call to @autismcrisis.bsky.social and the BSky community: For 15 years, Michelle Dawson has illuminated autism research through her 17.7k posts on Twitter/X. We make a public appeal to Michelle Dawson and the community: who can help make this work accessible and usable in a lasting format? 1/5

"This review (...) centralizes the voices of autistic women and girls (...) on school barriers [, contrasting with literature focused] on the perceptions (...) of professionals without the inclusion of the autistic individuals themselves." (K. Urbaniak et al., 2024). autidacts.org/en/pg-ref/935

Autistic Authors and Illustrators Starter Pack is here! If you're an Autistic author or illustrator and would like to be included, let me know! #AutisticAuthor #AutisticIllustrator #Autistic #ActuallyAutistic go.bsky.app/86ZkEZE

"For autism research to be of maximum benefit to autistic people it should at least be participatory but ideally it should be autistic-led, as research led by autistics will almost always have the potential to be emancipatory (...)" (Chown et al., 2023). More info 👇 autidacts.org/en/pg-ref/720

"This review (...) centralizes the voices of autistic women and girls (...) on school barriers [, contrasting with literature focused] on the perceptions (...) of professionals without the inclusion of the autistic individuals themselves." (K. Urbaniak et al., 2024). autidacts.org/en/pg-ref/935

Getting the R-word out of circulation - especially in health, education, and labor policy (see Rosa's Law) - was a monumental undertaking. Don't let it come back. Challenge its use.

'it may (...) be equally important to educate others to be more aware and accepting of social presentation differences, rather than trying to change the many (...) factors of self-presentation that mark the expressions of individuals with ASD as atypical'(S. Sasson,2017). autidacts.org/en/pg-ref/883

"Ecological model research often points towards the need for modification of environments in which autistic people live, rather than placing all the responsibility on autistic individuals to change" (W. Mandy, 2023). More details on this reference here 👇 autidacts.org/en/pg-ref/884

'it may (...) be equally important to educate others to be more aware and accepting of social presentation differences, rather than trying to change the many (...) factors of self-presentation that mark the expressions of individuals with ASD as atypical'(S. Sasson,2017). autidacts.org/en/pg-ref/883

"consistent with previous disclosure research, many of the negative experiences reported by participants in this study were discussed in relation to society’s limited knowledge and understanding of autism" (C. Edwards & coll., 2024). More details on this reference here 👇 autidacts.org/en/pg-ref/149

Being prepared for #perimenopause can help a lot - I had no idea what was going on when mine began. I didn’t know I was #Autistic back then either. I’ve been doing research on Autistic #menopause with colleagues (two more papers are due out soon) please see: www.AutisticMenopause.com

"While the impact of internalized stigma is well-documented in other minoritized communities, the consideration or prioritization of any subjective experiences at all has, until recently, been largely ignored in autism research." (A. Gurba et al., 2024). More info here:👇 autidacts.org/en/pg-ref/811

Mental health professional training is structured in a way that strongly disadvantages autistic trainees, who have been shown to be great clinicians—especially with autistic clients. We dove in to unmask the bias in graduate mental health education. Read it here: www.liebertpub.com/doi/10.1089/...