{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,12]],"date-time":"2026-06-12T13:25:43Z","timestamp":1781270743814,"version":"3.54.1"},"reference-count":173,"publisher":"Association for Computing Machinery (ACM)","issue":"3","license":[{"start":{"date-parts":[[2023,6,10]],"date-time":"2023-06-10T00:00:00Z","timestamp":1686355200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.acm.org\/publications\/policies\/copyright_policy#Background"}],"funder":[{"name":"National Science Foundation Graduate Research Fellowship","award":["1256260"],"award-info":[{"award-number":["1256260"]}]},{"name":"University of Michigan School of Information Diversity, Equity, and Inclusion Committee"}],"content-domain":{"domain":["dl.acm.org"],"crossmark-restriction":true},"short-container-title":["ACM Trans. Comput.-Hum. Interact."],"published-print":{"date-parts":[[2023,6,30]]},"abstract":"<jats:p>The Internet has, for several decades, played a critical role in autistic self-advocacy and community building. This semi-autoethnographic, interpretivist study turns to #ActuallyAutistic Twitter to examine autistic concerns about autism research, how these concerns differ from those of autism researchers, and how autistics interact with autism research and researchers. I find that #ActuallyAutistic Twitter discourses align with the neurodiversity paradigm, while dominant autism discourses in the academy align with the medical model of disability. Though both orientations towards autism research sometimes share research priorities, they represent fundamentally irreconcilable approaches to these priorities and autism, more broadly. I explore how autistics on Twitter interact with non-autistic researchers and how the tenor of these interactions varies according to which research paradigm a particular researcher subscribes. I conclude with a discussion of how HCI researchers interested in autism can operationalize these findings by approaching their work through the framework of crip technoscience.<\/jats:p>","DOI":"10.1145\/3569891","type":"journal-article","created":{"date-parts":[[2022,10,27]],"date-time":"2022-10-27T12:27:56Z","timestamp":1666873676000},"page":"1-34","update-policy":"https:\/\/doi.org\/10.1145\/crossmark-policy","source":"Crossref","is-referenced-by-count":28,"title":["#ActuallyAutistic Twitter as a Site for Epistemic Resistance and Crip Futurity"],"prefix":"10.1145","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5424-4508","authenticated-orcid":false,"given":"Josh","family":"Guberman","sequence":"first","affiliation":[{"name":"University of Michigan School of Information"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"320","published-online":{"date-parts":[[2023,6,10]]},"reference":[{"key":"e_1_3_3_2_2","unstructured":"AAC Journal [@AACjourn]. 2021. @AutSciPerson Per policy the AAC Journal does not publish studies without IRB approval. Here informed consent was obtained from the legal guardian. Not sure how you arrived at the conclusion that the child was forced to wear the watch. Retrieved April 21 2021 from https:\/\/twitter.com\/AACjourn\/status\/1356082744116305920."},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.7551\/mitpress\/10771.001.0001"},{"key":"e_1_3_3_4_2","unstructured":"Alyssa. 2019. A2: I do want autism researchers to read autistic writing and not just writing by autistic people who get published in peer-reviewed journals. That doesn\u2019t mean I want researchers treating our writing like a zoo exhibit. #AutChat. Retrieved April 18 2021 from https:\/\/twitter.com\/yes_thattoo\/status\/1191102329874997249."},{"key":"e_1_3_3_5_2","unstructured":"Alyssa [@yes_thattoo]. 2019. @StarFeuri I very much appreciated the researchers who asked whether I wanted to be anonymous pseudonymous or named rather than assuming anonymity was what I\u2019d want or what \u201chad\u201d to happen. #AutChat. Retrieved April 18 2021 from https:\/\/twitter.com\/yes_thattoo\/status\/1191104875922411520."},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1002\/aur.2101"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1145\/3359302"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1176\/appi.books.9780890425787"},{"key":"e_1_3_3_9_2","unstructured":"AutisticSciencePerson [@AutSciPerson]. 2019. I\u2019m really interested in this but I think it would be even more interesting if they had more than 3 autistic women doing the videos (they had 17 autistic adult men and 3 autistic adult women that neurotypicals were watching videos of). I wonder about gender differences here.Retrieved April 18 2021 from https:\/\/twitter.com\/AutSciPerson\/status\/1105536544553746433."},{"key":"e_1_3_3_10_2","unstructured":"AutisticSciencePerson [@AutSciPerson]. 2019. @Noahsasson @kmdebrabander @DanielFaso Any thoughts on this? Also wondering if 76% female neurotypicals (384\/505) rating mostly autistic males (17\/20) might affect the results compared to NT males judging autistic males or NT females judging autistic females. Retrieved April 18 2021 from https:\/\/t.co\/biKVvZfrOt. https:\/\/twitter.com\/AutSciPerson\/status\/1105537992016445445."},{"key":"e_1_3_3_11_2","unstructured":"AutisticSciencePerson [@AutSciPerson]. 2021. Here\u2019s the scary part. They used a \u201cTreatment acceptability survey\u201d to assess how useful the teaching assistants special education teachers and SLPs found the smartwatch. That\u2019s right. They asked everyone how well the \u201ctreatment\u201d worked except for the autistic person. 6\/13. Retrieved April 21 2021 from https:\/\/twitter.com\/AutSciPerson\/status\/1353498482863202304."},{"key":"e_1_3_3_12_2","unstructured":"AutisticSciencePerson @AutSciPerson. 2021. I cannot emphasize how much I hate research that uses technology to force autistic people to mask. I\u2019m honestly surprised this article wasn\u2019t from The Onion. A thread about this: 1\/15 https:\/\/t.co\/IsbVIYJTSB. Retrieved April 18 2021 from https:\/\/twitter.com\/AutSciPerson\/status\/1353182978738958337."},{"key":"e_1_3_3_13_2","unstructured":"AutisticSciencePerson @AutSciPerson. 2021. It\u2019s not ethical to perform a study on someone without their consent. So how is it ethical to force an autistic student to wear a smartwatch? Esp. with all of its sensory stimuli. How can you make an autistic person use this when the majority disagreed that it helped?! 9\/13. Retrieved April 21 2021 from https:\/\/twitter.com\/AutSciPerson\/status\/1353498488940720131."},{"key":"e_1_3_3_14_2","unstructured":"AutisticSciencePerson @AutSciPerson. 2021. The main goal is seeing how well the autistic 9-year old girl follows directions using the watch. It\u2019s not about increased quality of life outcomes. It\u2019s about often she looks at the watch and does what it says. 3\/13. Retrieved April 21 2021 from https:\/\/twitter.com\/AutSciPerson\/status\/1353498479847493636."},{"key":"e_1_3_3_15_2","unstructured":"AutisticSciencePerson @AutSciPerson. 2021. The majority of professionals (total sample size is 171) don\u2019t actually think using the smartwatch was helpful. \u201cI believe that it would be acceptable to use this treatment without children\u2019s consent.\u201d 67% agreed 33% strongly agreed! Why is this question even being asked? 8\/13. Retrieved April 21 2021 from https:\/\/twitter.com\/AutSciPerson\/status\/1353498487967637506."},{"key":"e_1_3_3_16_2","unstructured":"AutisticSciencePerson @AutSciPerson. 2021. The only consideration for the autistic person\u2019s well-being is the Tactile sensitivity survey to see if she could wear the smartwatch. Who takes the survey you might ask? The autistic child\u2019s father. Not the autistic person herself! We have no idea if that\u2019s accurate. 2\/13. Retrieved April 21 2021 from https:\/\/twitter.com\/AutSciPerson\/status\/1353498478702448643."},{"key":"e_1_3_3_17_2","unstructured":"AutisticSciencePerson @AutSciPerson. 2021. This is where it gets really quite devastating. Here are the results of the acceptability survey (alt-text included). In this survey 67% of professionals disagreed with the statement \u201cI believe this treatment is likely to result in permanent improvement.\u201d Only 33% agreed. 7\/13 https:\/\/t.co\/qExwLlYu0W. Retrieved April 21 2021 from https:\/\/twitter.com\/AutSciPerson\/status\/1353498486512242689."},{"key":"e_1_3_3_18_2","unstructured":"Mel Baggs. 2007. In My Language. 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People consent to public posting but they don\u2019t consent to research interpretation. #AutChat (continued in replies.). Retrieved April 18 2021 from https:\/\/twitter.com\/StarFeuri\/status\/1191103123684806661."},{"key":"e_1_3_3_128_2","doi-asserted-by":"publisher","DOI":"10.1007\/978-981-13-8437-0"},{"key":"e_1_3_3_129_2","unstructured":"sam [@Endo_Gremlin. 2019. #AutChat a2 I think following our blogs and social media ect is fine but any use of it should be with informed consent from all involved. And neurotypicals should always accept that they may be asked to leave a discussion or accept a group may be ranting in general not personal. Retrieved April 18 2021 from https:\/\/twitter.com\/Endo_Gremlin\/status\/1191103196283985920."},{"key":"e_1_3_3_130_2","unstructured":"sarah o\u2019brien @SarahMarieOB. 2019. A1: Top three priorities 1. Co-production being done meaningfully and not to fulfil diversity criteria but in all areas. 2. Practical applied and applicable research. 3. 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