'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia / Diana Weiting TAN in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1344-1356 Titre : 'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia Type de document : Texte imprimé et/ou numérique Auteurs : Diana Weiting TAN, Auteur ; Marion RABUKA, Auteur ; Tori HAAR, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1344-1356 Langues : Anglais (eng) Mots-clés : autism  co-production  discrimination  higher education  inclusive education  participatory research  stigma Index. décimale : PER Périodiques Résumé : In recent years, the number of autistic people entering university has increased in Australia and worldwide. While an encouraging trend, autistic students' completion rates remain much lower than non-autistic students in Australia. Perhaps unsurprisingly, numerous studies investigating autistic people?s experiences at universities have identified stigma and discrimination as a significant barrier facing autistic people in higher education. In this study, our team of autistic co-researchers and non-autistic researchers co-produced an in-depth qualitative study to understand the contexts and circumstances in which autistic people felt stigmatised or experienced discrimination at universities in Australia. We interviewed 21 autistic people who either had completed at least one university course, or were studying a university course, or had enrolled in but discontinued at least one university course in Australia. Using reflexive thematic analysis, we identified four themes: (1) 'My disability is something that people just don?t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. Based on these findings, we suggested implementing Universal Design for Learning, neurodiversity-affirming and trauma-informed practices, together with a participatory approach to better design university curricula, processes, and support services for autistic students. Lay Abstract Autistic students experience many challenges at university. One significant barrier identified in past research was autistic students' experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students' experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university - some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) 'My disability is something that people just don?t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs. En ligne : https://dx.doi.org/10.1177/13623613231219744 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] 'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia [Texte imprimé et/ou numérique] / Diana Weiting TAN, Auteur ; Marion RABUKA, Auteur ; Tori HAAR, Auteur ; Elizabeth PELLICANO, Auteur . - p.1344-1356. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1344-1356 Mots-clés : autism  co-production  discrimination  higher education  inclusive education  participatory research  stigma Index. décimale : PER Périodiques Résumé : In recent years, the number of autistic people entering university has increased in Australia and worldwide. While an encouraging trend, autistic students' completion rates remain much lower than non-autistic students in Australia. Perhaps unsurprisingly, numerous studies investigating autistic people?s experiences at universities have identified stigma and discrimination as a significant barrier facing autistic people in higher education. In this study, our team of autistic co-researchers and non-autistic researchers co-produced an in-depth qualitative study to understand the contexts and circumstances in which autistic people felt stigmatised or experienced discrimination at universities in Australia. We interviewed 21 autistic people who either had completed at least one university course, or were studying a university course, or had enrolled in but discontinued at least one university course in Australia. Using reflexive thematic analysis, we identified four themes: (1) 'My disability is something that people just don?t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. Based on these findings, we suggested implementing Universal Design for Learning, neurodiversity-affirming and trauma-informed practices, together with a participatory approach to better design university curricula, processes, and support services for autistic students. Lay Abstract Autistic students experience many challenges at university. One significant barrier identified in past research was autistic students' experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students' experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university - some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) 'My disability is something that people just don?t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs. En ligne : https://dx.doi.org/10.1177/13623613231219744 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

Letter to the Editor: A possible threat to data integrity for online qualitative autism research / Elizabeth PELLICANO in Autism, 28-3 (March 2024)  

Public ISBD [article]  inAutism > 28-3 (March 2024) . - p.786-792 Titre : Letter to the Editor: A possible threat to data integrity for online qualitative autism research Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Dawn ADAMS, Auteur ; Laura CRANE, Auteur ; Calliope HOLLINGUE, Auteur ; Connie ALLEN, Auteur ; Katherine ALMENDINGER, Auteur ; Monique BOTHA, Auteur ; Tori HAAR, Auteur ; Steven K. KAPP, Auteur ; Elizabeth WHEELEY, Auteur Article en page(s) : p.786-792 Langues : Anglais (eng) Mots-clés : fraud  imposter  research participation Index. décimale : PER Périodiques Résumé : Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: "scammer" participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts. Lay abstract Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were "scammer participants": people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research. En ligne : https://dx.doi.org/10.1177/13623613231174543 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523 [article] Letter to the Editor: A possible threat to data integrity for online qualitative autism research [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Dawn ADAMS, Auteur ; Laura CRANE, Auteur ; Calliope HOLLINGUE, Auteur ; Connie ALLEN, Auteur ; Katherine ALMENDINGER, Auteur ; Monique BOTHA, Auteur ; Tori HAAR, Auteur ; Steven K. KAPP, Auteur ; Elizabeth WHEELEY, Auteur . - p.786-792. Langues : Anglais (eng) in Autism > 28-3 (March 2024) . - p.786-792 Mots-clés : fraud  imposter  research participation Index. décimale : PER Périodiques Résumé : Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: "scammer" participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts. Lay abstract Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were "scammer participants": people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research. En ligne : https://dx.doi.org/10.1177/13623613231174543 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523

Reporting community involvement in autism research: Findings from the journal Autism / Diana Weiting TAN ; Laura CRANE ; Tori HAAR ; Melanie HEYWORTH ; Rebecca POULSEN ; Elizabeth PELLICANO in Autism, 29-2 (February 2025)  

Public ISBD [article]  inAutism > 29-2 (February 2025) . - p.490-503 Titre : Reporting community involvement in autism research: Findings from the journal Autism : Autism Type de document : Texte imprimé et/ou numérique Auteurs : Diana Weiting TAN, Auteur ; Laura CRANE, Auteur ; Tori HAAR, Auteur ; Melanie HEYWORTH, Auteur ; Rebecca POULSEN, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.490-503 Langues : Anglais (eng) Mots-clés : autism  community involvement  participatory research  patient and public involvement  stakeholders Index. décimale : PER Périodiques Résumé : Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, Autism introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we - a team of Autistic and non-autistic researchers - searched for articles published in Autism in 2019, 2 years before policy implementation, and in 2022, 1 year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (1) improving the transparency in the reporting of community involvement and (2) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers - or even assume control of the research process. Lay abstract There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal Autism made it a rule for authors to report whether they involved community members in their work; and if they did, how they had done so. In this study, we wanted to see how this new rule has changed things. Our team of Autistic and non-autistic researchers read all 283 articles published in Autism in 2019, about 2 years before the rule was in place, and in 2022, about 1 year after. We recorded what each article was about and how the community was involved. We found there was an increase in how often articles talked about community involvement - from about 10% before the rule to over 50% after. Most of these studies, however, only involved community members giving advice, with the researchers making most decisions about the research. This was especially true for applied research (like wellbeing) rather than basic science (like causes of autism). Also, some of these articles were unclear or did not give enough information for us to understand how the community was involved. This tells us that while it is promising that more community involvement is reported, researchers need to describe this involvement more clearly. It is also important for community members to have a bigger say in research by sharing power with the researchers or even leading the research themselves. En ligne : https://dx.doi.org/10.1177/13623613241275263 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547 [article] Reporting community involvement in autism research: Findings from the journal Autism : Autism [Texte imprimé et/ou numérique] / Diana Weiting TAN, Auteur ; Laura CRANE, Auteur ; Tori HAAR, Auteur ; Melanie HEYWORTH, Auteur ; Rebecca POULSEN, Auteur ; Elizabeth PELLICANO, Auteur . - p.490-503. Langues : Anglais (eng) in Autism > 29-2 (February 2025) . - p.490-503 Mots-clés : autism  community involvement  participatory research  patient and public involvement  stakeholders Index. décimale : PER Périodiques Résumé : Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, Autism introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we - a team of Autistic and non-autistic researchers - searched for articles published in Autism in 2019, 2 years before policy implementation, and in 2022, 1 year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (1) improving the transparency in the reporting of community involvement and (2) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers - or even assume control of the research process. Lay abstract There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal Autism made it a rule for authors to report whether they involved community members in their work; and if they did, how they had done so. In this study, we wanted to see how this new rule has changed things. Our team of Autistic and non-autistic researchers read all 283 articles published in Autism in 2019, about 2 years before the rule was in place, and in 2022, about 1 year after. We recorded what each article was about and how the community was involved. We found there was an increase in how often articles talked about community involvement - from about 10% before the rule to over 50% after. Most of these studies, however, only involved community members giving advice, with the researchers making most decisions about the research. This was especially true for applied research (like wellbeing) rather than basic science (like causes of autism). Also, some of these articles were unclear or did not give enough information for us to understand how the community was involved. This tells us that while it is promising that more community involvement is reported, researchers need to describe this involvement more clearly. It is also important for community members to have a bigger say in research by sharing power with the researchers or even leading the research themselves. En ligne : https://dx.doi.org/10.1177/13623613241275263 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547

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