• References for Epistemic Injustice thread
      K.J. Elphinstone, 28th March 2026

      Bonnello, C. (2022). Results and analysis of the Autistic Not Weird 2022 autism survey. Autistic Not Weird. URL: https://autisticnotweird.com/autismsurvey/ Reports that fewer than 10% of autistic respondents wanted a cure, while over 80% did not.

      NHS inform. (n.d.). Myths about autism. NHS inform. URL: https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/autism/myths-about-autism/ States that there is no cure for autism, and that many autistic people see autism as an important part of their identity and would not want to be cured.

      Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press. URL: https://academic.oup.com/book/32817 Foundational source on testimonial injustice and hermeneutical injustice – being wronged in one’s capacity as a knower.

      AIMS-2-TRIALS. (n.d.). About AIMS-2-TRIALS. AIMS-2-TRIALS. URL: https://www.aims-2-trials.eu/about-aims-2-trials/ Presents itself as progressive and participatory while sitting within a €115 million programme focused on the biology of autism, biomarkers, tailored treatments, and the development of new medicines, funded through the Innovative Medicines Initiative 2 Joint Undertaking with support from the European Union’s Horizon 2020 programme, EFPIA, Autism Speaks, and SFARI.

      Mery, P. (n.d.). Gizmonaut. Gizmonaut. URL: https://gizmonaut.net/ Autistic-led critique centred on participation, accountability, and ‘nothing about us without us’.

      Mery, P. (2015). Blog archive. Gizmonaut. URL: https://gizmonaut.net/blog/2015/ Develops an autistic-led ethical critique of autism research and institutional power.

      Mery, P. (2023). Blog archive - Grant agreements. Gizmonaut. URL: https://gizmonaut.net/autism-documents/. Freedom of Information-obtained grant documents and related links for major autism research projects, including Spectrum 10K and AIMS-2-Trials.

      Simons Foundation Autism Research Initiative. (n.d.). Simons Initiative for the Developing Brain. Simons Foundation Autism Research Initiative. URL: https://www.sfari.org/funded-project/simons-initiative-for-the-developing-brain/. Major autism funder focusing on autism treatments and on "discovering the biological mechanisms underlying autism," with a budget of approximately $78 million per year and more than $525 million committed in external research support since 2006. Fun fact: I wrote to them about funding for my PhD on autism and intergenerational trauma, but they replied saying, "We only fund experimental research."

      Broderick, A. A. (2022). The autism industrial complex: How branding, marketing, and capital investment turned autism into big business. Canadian Journal of Disability Studies. URL: https://cjds.uwaterloo.ca/index.php/cjds/article/download/896/1122. Shows how autism is a site of branding, lobbying, market expansion, and capital investment, including billions of dollars directed into genetic and biomedical autism research.

      Autism Speaks. (n.d.). Federal advocacy. Autism Speaks. URL: https://www.autismspeaks.org/federal-advocacy States that its advocacy helped drive over $5.2 billion in federal autism-related funding since 2006. Autism Speaks has done a great deal to normalise abusive and dehumanising treatment of autistic people – especially through promoting ABA, which trains autistic children to suppress who they are, ignore their own distress, and become compliant, mask heavily, lose bodily autonomy, and carry trauma for years.

      Autism Investor Summit. (n.d.). Autism Investor Summit. Autism Investor Summit. URL: https://autisminvestorsummit.com/ Explicitly frames autism services as an investment landscape for service providers, investors, and other market actors.

      Neurosense. (n.d.). Why we need to rethink the autism spectrum – with Uta Frith. Let’s Talk Neurosense. URL: https://open.substack.com/pub/neurosense/p/why-we-need-to-rethink-the-autism Podcast discussion where Frith, among other things, describes autistic lived experience as an untrustworthy source of knowledge in research.

      TES. (n.d.). Uta Frith interview: Autism is not a spectrum. TES Magazine. URL: https://www.tes.com/magazine/teaching-learning/general/uta-frith-interview-autism-not-spectrum. Public-facing interview in which Frith argues that the autism spectrum has widened ‘to the point of collapse’. She also expresses the view that masking is unscientific as a concept, that autism in women has gone too far, and that when we find a biomarker all will be solved.

      Autistica. (n.d.). Good practice. Autistica research toolkit. URL: https://www.autistica.org.uk/our-research/research-toolkit/good-practice. Sets out an accessibility- and inclusion-focused model of autism research practice.

      Cascio, M. A., Weiss, J. A., & Racine, E. (2020). Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities. Autism. URL: https://warwick.ac.uk/fac/sci/psych/research/autism/creative-approaches-participatory-research-toolkit/cascio__weiss_et_al_ethics_in_par.pdf Argues for more respectful, participatory, and person-oriented approaches to autism research ethics.

      Charity Commission for England and Wales. (2025). Autistica. Register of Charities. URL: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print. Shows the comparatively small scale of Autistica’s funding, with total income of £1,845,400 for the year ending 31 March 2025.