Autihub.org

autidacts.orgAutiHubAutiHub brings together citizen-led, open projects focused on autistic participation and representation in autism knowledge production.The site develops t…

21 Aug

Autidacts.org is becoming **Autihub.org**, opening the project to a broader range of initiatives focused on the participation and representation of autistic people in autism research and knowledge production. More information in the coming days: autihub.org #AutismResearch #ActuallyAutistic

autihub.orgAutistic Autism Scholarship ProjectThe Autistic Autism Scholarship Project is a public database of academic publications authored or co-authored by autistic people.

The Autistic Autism Scholarship Project (AASP) now indexes autism-related publications by over 1,000 autistic authors! Updated daily with new publications, AASP makes autistic contributions to autism research more visible and accessible. autihub.org/en/aasp/

autihub.orgMichelle Dawson posts analysis on Twitter/X and Bluesky (@autismcrisis)This project documents public posts by Michelle Dawson (@autismcrisis) on autism science, scientific publications, and related debates. Twitter/X is treat…

New on AutiHub: a search tool for exploring and analysing 15,000 public posts by Michelle Dawson (@autismcrisis.bsky.social) on autism science and related debates, across Twitter/X (2009–2023) and Bluesky (2023–present). autihub.org/en/michelle-...

7/8 The tool can therefore support many kinds of analyses: which publications are discussed, which authors or journals recur, how particular topics evolve over time, and how specific areas of autism research are cited, questioned or debated.

8/8 Twitter/X data cover 10 Oct 2009 to 12 Oct 2023. Bluesky data cover 13 Oct 2023 to the present. Current processing prioritizes Bluesky because its open API supports more regular and reproducible synchronization.

5/8 For example, searching for “ABA” can identify posts discussing ABA while restricting results to posts linked to structured scientific references. This makes it possible to explore how a specific research topic has been discussed across many years.

6/8 Searches can also start from the scientific literature: enter an author, words from a title or abstract, a journal/source or publication years to find the corresponding posts and examine how particular studies or authors were discussed.

3/8 From links appearing in these posts, AutiHub has identified 9,080 structured scientific references (DOIs) or study registration records, allowing searches to connect posts with the scientific publications and registered studies being discussed.

4/8 The central feature is cross-search: post text, quotations, questions, dates and platform can be combined with reference-level filters such as title, abstract, author, journal/source, publication year and autism-related terms.

2/8 The tool covers more than 15 years of public engagement with autism research. Michelle Dawson has discussed and critically engaged with more than 10,000 scientific publications, providing an unusually large corpus for studying scientific debates over time.

autihub.orgAutistic Scholars ProjectThe Autistic Scholars Project is a public, freely accessible database that indexes academic publications authored or co-authored by at least one autistic …

1 Sept

Launching the Autistic Scholars Project on AutiHub: a free public database of academic publications authored/co-authored by autistic people. 354 autistic authors, 1,799 publications — with daily monitoring for new publications by included authors. autihub.org/en/autistic-...

aims-2-trials.euRoche and AIMS-2-TRIALS Receives EURORDIS Black Pearl Award 2026

15 Mar

“The [EURORDIS] award was granted in recognition of the commitment of AIMS-2-TRIALS leaders to involving autistic people [...] as equal partners in this initiative.” “Equal partners.” Assertions are not evidence. This should be studied empirically. www.aims-2-trials.eu/2026/03/10/r...

doi.orgFrontiers | Editorial: Advancing interventions and therapeutic outcomes for autistic youth: a multidisciplinary perspectiveCurrent status of the field Autistic people and their families experience barriers in access to health and social care services (Mendez et al., 2023). Despit...

21 Sept 2025

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...

github.comGitHub - cedric-detienne/Autistic-participatory-metrics: Empirical tools and methods to analyse participatory approaches in autism researchEmpirical tools and methods to analyse participatory approaches in autism research - cedric-detienne/Autistic-participatory-metrics

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...

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

discord.ggJoin the Autistic Participatory Metrics Discord Server!The Autistic Participatory Metrics Discord coordinates the broader Autistic Participatory Metrics project. | 15 members

discord.ggJoin the Autistic Participatory Metrics Discord Server!The Autistic Participatory Metrics Discord coordinates the broader Autistic Participatory Metrics project. | 15 members

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...

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.

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.

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...

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.

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

19 May 2025

📢 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

📊 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

19 May 2025

📂 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

🔍 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

25 Apr 2025

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."

25 Apr 2025

Autistic people appear to be excluded from **decision-making positions** in this project, meaning they have little to no say in how the research that concerns them is conducted — or are there well-documented facts that demonstrate otherwise? @aims2trials.bsky.social @teresadelbianco.bsky.social

participatoryautismresearch.wordpress.comAttempting to lift the veil of secrecy over AIMS-2News Written by: Panda Mery, Dinah Murray & Kabie Brook The Autism Innovative Medicine Studies-2-Trials (AIMS-2-Trials) was launched as the largest ever grant given to autism research on June 1…

25 Apr 2025

The alert was given 7 years ago already: participatoryautismresearch.wordpress.com/2018/08/11/a...

Source: youtu.be/VhR2bi8tJ3E?...

youtu.beNeurodiversity and Inclusion in Neuroscience Research NetworksYouTube video by AIMS-2-TRIALS Autism Research

ojrd.biomedcentral.com‘We are the engine’: a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability - Orphanet Journal ...Background Individuals living with rare congenital malformations and/or intellectual disability often face challenges in accessing appropriate healthcare. Clinical practice guidelines (CPGs) may serve...

16 Apr 2025

"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....

autidacts.orgConceptualizing and describing autistic language: Moving on from ‘verbal’, ‘minimally verbal’ and ‘nonverbal’Learn more

13 Apr 2025

"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

pubmed.ncbi.nlm.nih.govWho Tweets for the autistic community? A natural language processing-driven investigation - PubMedThe formation of autism advocacy organisations led by family members of autistic individuals led to intense criticism from some parts of the autistic community. In response to what was perceived as a ...

12 Apr 2025

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

Autihub.org reposted

Dr Aimee Grant

@draimeegrant.bsky.social

10 Apr 2025

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

theconversation.comWhy the autism jigsaw puzzle piece is such a problematic symbolTo many autistic people, the puzzle piece represents stigma, exclusion and a harmful push to make them conform.

onlinelibrary.wiley.comWhat Else Is Happening to the Mirror Neurons?—A Bibliometric Analysis of Mirror Neuron Research Trends and Future Directions (1996–2024)We conducted a bibliometric analysis of mirror neuron research to examine global publication trends, methodological advancements, and emerging applications. Our findings highlight robust internationa...

11 Apr 2025

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....

pmc.ncbi.nlm.nih.govWhat Happened to Mirror Neurons?Ten years ago, Perspectives in Psychological Science published the Mirror Neuron Forum, in which authors debated the role of mirror neurons in action understanding, speech, imitation, and autism and a...

11 Apr 2025

Reminder: "In the area of autism, studies using behavioral and neurological measures have tried and failed to find evidence supporting the “broken-mirror theory” of autism." (2022) pmc.ncbi.nlm.nih.gov/articles/PMC...

link.springer.comEffects of social skills training on social responsiveness of people with Autism spectrum disorder: a systematic review with meta-analysis - European Child & Adolescent PsychiatrySocial skills training (SST) is a widely proposed intervention to address social impairments in autism spectrum disorder (ASD). SST employs a series of activities aiming to enhance pro-social behavior...

"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?

sciencedirect.comDepressive symptomatology in autism and intellectual disability: A network analysisDepression is a very common psychopathology in the ASD population. Despite the common comorbidity this association is not well understood. To understa…

"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...

nasenjournals.onlinelibrary.wiley.comMultiplayer gaming and autism: Social communication through repetitive behavioursThe popularity of online multiplayer gaming among primary-school students, including autistic students, has rapidly increased over the past decade. Social characteristics and interactions of autistic...

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/...

link.springer.comWhat Factors Have Been the Most Helpful and Harmful and When? Identifying Key Impacts on Psychosocial Development According to Autistic Adults and Caregivers - Journal of Autism and Developmental Diso...Few studies have asked autistic adults and caregivers directly about what has most positively and negatively impacted their lives. This study sought to: (a) identify positive and negative factors expe...

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

Autihub.org reposted

Michelle Dawson

@autismcrisis.bsky.social

3 Mar 2025

"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

sciencedirect.comEmbracing dissensus in lived experience research: the power of conflicting experiential knowledgeLived experience is a crucial component in the development of innovative interventions and services in mental health care. To unlock the full potentia…

autidacts.org‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge productionLearn more

27 Dec 2024

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