#ActuallyAutistic Twitter as a Site for Epistemic Resistance and Crip Futurity

Authors

Abstract

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.

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132. (n.d.). Laura Crane @LauraMayCrane. 2019. A7: I think researchers often use terribly offensive language when talking about autism (abnormal deficit impaired) - this makes research inaccessible (I cringe at my old research articles where I used words like this... I’m trying to be a better ally now!) #AutINSAR. https://twitter.com/LauraMayCrane/status/1124002956154691592 .

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133. (n.d.). Lorcan Kenny @LorcanKenny. 2019. @thinkingautism A2: Some examples include sleep difficulties food and eating challenges managing physical health difficulties keeping employment (rather than simply attaining employment) assessing how autistic involvement actually changes how research gets done #AutINSAR. https://twitter.com/LorcanKenny/status/1123992285446852609 .

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134. (n.d.). Lorcan Kenny @LorcanKenny. 2019. @thinkingautism A7: The results of research is often only described in scientific papers which might be behind a paywall and written in scientific language. To change this we must get universities to incentivise researchers to do public engagement (i.e. make it a promotion criteria) #AutINSAR. https://twitter.com/LorcanKenny/status/1124002101766578176 .

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138. (n.d.). Melissa Chapple @melissachapple. 2019. @autchatmod A2: Findings should be put in to accessible formats and be open access if possible (free to read). I’ve found autistic communities online to be an amazing resource - the community is diverse so not everyone will like the methods being transparent about this is important. https://twitter.com/melissachapple/status/1191103131301625859 .

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144. (n.d.). Noah Sasson @Noahsasson. 2019. @AspieHuman @kmdebrabander @DanielFaso most of the autistic adults they were rating were male. The tiny sample of autistic adults who were female prevented us making conclusions about whether autistic females are evaluated differently than autistic males but that is a direction we are interested in going. https://twitter.com/Noahsasson/status/1105547597870182402 .

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145. (n.d.). Noah Sasson @Noahsasson. 2019. @AspieHuman @kmdebrabander @DanielFaso The rater sample was 76% female but we still had well over 100 male raters so we still could examine gender effects. There were just a few. Male NTs rated autistic adults as more attractive and were more willing to hang out with them compared to NT females. Maybe because... https://twitter.com/Noahsasson/status/1105547112157192192 .

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146. (n.d.). Noah Sasson @Noahsasson. 2019. We have a new paper! Led by my student Kerrianne Morrison (w/@kmdebrabander and @DanielFaso) we find that impressions of autistic adults made by neurotypicals (NT) are driven more by characteristics of the NT perceiver than by those of the ASD target. THREAD https://t.co/V0xtFdXFGx . https://twitter.com/Noahsasson/status/1104028378011758593 .

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154. (n.d.). Rua M. Williams @StarFeuri. 2019. Q2 con’t: Interpretation of findings should be validated with the original posters. This means requesting retroactive consent. Not everyone will respond. But those that do are entitled to editorial control anonymity (or not) and veto power. #AutChat. https://twitter.com/StarFeuri/status/1191104246638403589 .

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155. (n.d.). Rua M. Williams @StarFeuri. 2019. Q2 con’t: Sound like work? So was the original labor in the tweets and blogs you’re scraping. Also I’ve seen projects like this where blogs are “anonymized” but literally anyone who’s been in the community long enough can identify the original content. It’s theft. Cite us. https://twitter.com/StarFeuri/status/1191105055665139712 .

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156. (n.d.). Rua M. Williams @StarFeuri. 2019. Q2: I find the emerging practice of “scraping” publicly posted data for research purposes troublesome. It Can be extractive and exploitative. People consent to public posting but they don’t consent to research interpretation. #AutChat (continued in replies.). https://twitter.com/StarFeuri/status/1191103123684806661 .

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157. (n.d.). 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. https://twitter.com/Endo_Gremlin/status/1191103196283985920 .

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158. (n.d.). sarah o’brien @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. Lifetime research- we are young and old! #AutINSAR. https://twitter.com/SarahMarieOB/status/1123989714829225985 .

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162. (n.d.). Sue Fletcher-Watson @SueReviews. 2019. A3 I’m concerned about technology based monitoring systems that aren’t co-created around an autistic-identified need. Massive risk of normalisation here as well as intrusion and privacy issues. #AutINSAR. https://twitter.com/SueReviews/status/1123995726915276803 .

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163. (n.d.). Tania ZA AutisticStrategies.net @ekverstania. 2019. Q1 #AutINSAR 1. Treatment of hypo- and hyperkalaemic sensory overstimulation and cofactors such as iNOS overproduction 2. autistic apraxia (body-mind disconnect) 3. #CRPD violations and trauma in ABA. 4. RCCX Theory. (Ja I know you said three...) https://t.co/qHpLzU9f4p . https://twitter.com/ekverstania/status/1124200068205166592 .

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164. (n.d.). the neuropunk who lived. 2019. a3 see my previous comment on outcome measures is probably my main concerns - if we’re measuring the wrong things we get lauded “evidence based practices” that are actually intensely harmful #AutINSAR. https://twitter.com/endeverstar/status/1123993380445356033 .

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165. (n.d.). theories of minds @theoriesofminds. 2019. A3 I’m very concerned about research being translated uncritically into tech for fine-grained behavioral control and surveillance. We urgently need research on harms done including when implemented as intended. #AutINSAR https://t.co/52vayHFOJt . https://twitter.com/theoriesofminds/status/1123993046813749249 .

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166. (n.d.). theories of minds @theoriesofminds. 2019. @autchatmod A2 I think it’s important for researchers who study autism and similar neurodivergences to learn from autistic and nd communities and doubly important for autistic/nd researchers to also have access to social support from those communities. #AutChat. https://twitter.com/theoriesofminds/status/1191102193048276992 .

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167. (n.d.). Thinking Person’s Guide To Autism @thinkingautism. 2019. Q1: What are your top three priorities for autism research? #AutINSAR #INSAR2019. https://twitter.com/thinkingautism/status/1123988758565666818 .

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168. (n.d.). Thinking Person’s Guide To Autism @thinkingautism. 2019. Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations? #AutINSAR #INSAR2019. https://twitter.com/thinkingautism/status/1123990614230622209 .

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169. (n.d.). Thinking Person’s Guide To Autism @thinkingautism. 2019. Q3: What concerns do you have about the directions in which autism research is headed based on work presented at #INSAR2019 or in general? #AutINSAR. https://twitter.com/thinkingautism/status/1123992513738629120 .

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170. (n.d.). Thinking Person’s Guide To Autism @thinkingautism. 2019. Q4: Researchers: How do you think your research (or another researcher’s work) will improve the lives of #ActuallyAutistic people who are already here—as opposed to autistic people in future generations? #AutINSAR #INSAR2019. https://twitter.com/thinkingautism/status/1123993972484071424 .

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171. (n.d.). Thinking Person’s Guide To Autism @thinkingautism. 2019. Q5: Which co-occurring conditions need more research attention and why? #AutINSAR #INSAR2019. https://twitter.com/thinkingautism/status/1123995504289955841 .

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172. (n.d.). Thinking Person’s Guide To Autism @thinkingautism. 2019. Q6: What are some concerns of minority autistic community members that don’t get enough research attention? #AutINSAR #INSAR2019. https://twitter.com/thinkingautism/status/1123998308064747520 .

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174. (n.d.). Thinking Person’s Guide To Autism @thinkingautism. 2019. Q8: Any topics we’ve missed that you’d like to discuss? #AutINSAR #INSAR2019. https://twitter.com/thinkingautism/status/1124001786631794688 .

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