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1.
Autism ; : 13623613241248713, 2024 May 13.
Article in English | MEDLINE | ID: mdl-38741516

ABSTRACT

LAY ABSTRACT: Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven't asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members' views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process.

2.
Autism ; 28(3): 786-792, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37212144

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child Development Disorders, Pervasive , Child , Humans , Communication , Parents
3.
Autism ; 28(6): 1344-1356, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38148639

ABSTRACT

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.


Subject(s)
Autistic Disorder , Social Stigma , Students , Humans , Universities , Australia , Male , Female , Students/psychology , Young Adult , Autistic Disorder/psychology , Adult , Adolescent
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