Participatory autism research: Early career and established researchers' views and experiences.

Participatory research is one pathway for advancing the agenda of autistic advocates; however, little is known about the attitudes and values of autism researchers toward participatory research. This is a participatory research mixed-methods study of 215 survey respondents and 21 interviewees, all corresponding authors of published autism research papers. Our aim was to identify attitudes and practices about participatory research with autistic and non-autistic community partners. We found relatively low rates of various participatory strategies, moderate rates of barriers to participatory research, and moderate endorsement of the importance of participatory research. The interviews elucidated participatory research's best practices, complexity of barriers, and transformative power to positively impact autism research. Interviewees discussed the connection between participatory research and decisions about language. The survey responses indicated that 30% of autism researchers never used identity-first language. An emergent theme from the interviews explored the unique contribution of insider research-research in which an autistic person brings their expertise derived from lived experience and formal research training. This research provides descriptions of the current state of participatory autism research and guidance for its utilization.Lay AbstractParticipatory research is a way for autistic advocates, other community advocates, and researchers to work together for the benefit of the autistic community. Participatory research is when community members are partners throughout the research process, for example, selecting research questions, determining research methods, and interpreting results. However, little is known about autism researchers' attitudes and values about participatory research. This research describes the participatory research strategies autism researchers use, researchers' attitudes toward participatory research, and researchers' insights into best practices in participatory research. We looked at participatory autism research involving autistic people and non-autistic people who are connected to the autistic community, such as parents and teachers of autistic people. We surveyed 215 autism researchers to find out how much autism research is participatory, how important autism researchers think participatory research is, and what barriers get in the way of doing participatory autism research. On average, researchers who responded to the survey reported relatively low rates of participatory research, medium rates of barriers to participatory research, and medium agreement on the value of participatory research. The survey also asked what language they use regarding autism; a significant proportion of researchers in the study reported never using identity-first language (e.g., autistic person, as opposed to person-first language; person with autism). We also interviewed 21 of the researchers who responded to the survey. The interviews covered topics such as possible strategies to increase participatory research, examples of barriers to participatory research, and the interviewees' views on the importance of participatory research. Interviewees also discussed the connection between participatory research and decisions about language regarding autism. Several interviewees talked about the unique contributions of autistic academics, who have both lived experience as autistic people and formal research training.

An Expert Roundtable Discussion on Experiences of Autistic Autism Researchers.

Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well.

Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an “ivory tower,” disconnected from community members’ lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members’ roles tended toward tokenism. Third, our participants spoke of the need to “bridge the gap” between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as “the way of the future.” Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research.

Participatory approaches, in which researchers work together with members of the autism community (e.g., autistic people, family members, caregivers, or other stakeholders) to design, conduct, and disseminate research, have become increasingly prominent within the field of autism research over the past decade. Despite growing academic and community interest in conducting participatory studies, stakeholder collaboration remains infrequent in autism research, at least partially due to systemic barriers. To help reduce barriers to engaging in participatory autism research, the International Society for Autism Research (INSAR) Autistic Researchers Committee has launched the INSAR Community Collaborator Request (ICCR; https://www.autism-insar.org/page/iccr), a platform on the INSAR website that allows autism researchers conducting participatory research to seek out stakeholder collaborators from the autism community (including both autistic people and their family members/caregivers, as relevant to a given research project). Interested stakeholders also have the opportunity to subscribe to ICCR posts, allowing them to be alerted of new opportunities for collaboration and potentially increasing their involvement in autism research. Overall, the ICCR provides a venue to connect autism researchers with potential community collaborators, reducing barriers to participatory autism research and increasing the frequency of successful community-academic partnerships within the field. We are hopeful that in the long term, such changes will lead to greater alignment between research outputs and the goals of the greater autism community, and consequently an increase in the overall quality and relevance of autism research.

There has been a focus on autistic-led and participatory research in autism research, but minimal discussion about whether the field is hospitable to autistic involvement. While the focus on participatory and/or autistic-led research is abundantly welcome, a wider conversation should also happen about how autistic people are treated in the process of knowledge creation. As such, I present a critical reflection on my experiences of academia as an autistic autism researcher. I open by questioning whether I am an academic, an activist, or an advocate before discussing my journey through academia, and my exposure to dehumanizing, objectifying, and violent accounts of autism. I highlight how the construction of objectivity has resulted in a failure to question the validity of these dehumanizing accounts of autism, which are regarded as “scientifically-sound” by virtue of their perceived “objectivity.” Furthermore, I discuss how the idea of objectivity is used to side-line autistic expertise in disingenuous ways, especially when this knowledge challenges the status-quo. Despite claiming to be value-free, these dehumanizing accounts of autism embody social and cultural values, with a complete lack of transparency or acknowledgment. I then discuss how these dehumanizing accounts and theories—entangled in values—reverberate into autistic people's lives and come to be ways of constituting us. Following this, I discuss the rationality of the anger autistic people feel when encountering these accounts, and instead of urging people to distance themselves from these emotions, I discuss the value of “leaning-in” as a radical act of dissent in the face of research-based violence. I then make a call to action urging all those who write or speak about autism to engage reflexively with how their values shape their understanding and construction of autistic people. Lastly, I conclude by answering my opening question: I have emerged as an advocate, activist, and academic. For me, belonging to the autistic community, acknowledging our marginalization, and recognizing our suffering within society means that hope for a better and just future has always, and will always underpin my work.

The aim of this article was to think with and elaborate on theories developed outside of autism research and the autistic community, and through this support the production of new autistic-led theories: theories and concepts based on autistic people's own embodied experiences and the social worlds we inhabit. The article consists of three different sections all of part of the overall umbrella, Being, knowing, and doing: Importing theoretical toolboxes for autism studies. In each section, we import useful concepts from elsewhere and tailor them to autism studies. Throughout, we mingle our own autoethnographic accounts and shared discourse in relation to research accounts and theories. Illustrating being, we explore and discuss the possibilities of critical realism in autism studies. Illustrating knowing, we explore and discuss the possibilities of standpoint theory in autism studies. Finally, illustrating doing, we explore and discuss the possibilities of neurocosmopolitics including epistemic (in)justice in autism studies. Our proposal here is for an epistemic shift toward neurodiverse collaboration. We are inviting nonautistic people to work with, not on, us, aiming at to make autism research more ethical, breaking down bureaucratic structures, and questioning poor theory and shoddy methodology. Acknowledging intersecting axes of oppression in which an individual seeks to renegotiate and reimagine what it means to belong also means to understand what needs changing in society, as it is and how we might do things differently.

Research during residency training: good for all?

High-impact academic experiences, particularly research and internship experiences, have positive impacts for engineering students on engineering task self-efficacy (ETSE), a measure of students’ perception of their ability to perform technical engineering tasks. However, underrepresented racial/ethnic minority students (URM) and women in engineering are found to have relatively lower self-perceptions across several academic and professional self-efficacy measures. Previous studies examined the impact of research and internship experiences on ETSE for students categorized by gender and URM status separately. The current study explores the impact of these experiences on ETSE for the intersection between these two identity categories. This study found that both non-URM and URM women that participated in research and internship experiences had lower ETSE scores than non-URM and URM men, respectively. However, URM women that participated in both research and internship experiences had a statistically similar ETSE score to non-URM men that had not participated in either. This study uses multiple linear regression to measure the association between engineering internships and student’s reported ETSE (effects of participating in research were not found to be significant across identities). Preliminary findings indicate that differences in ETSE between internship participants and non-participants are highest for URM women when compared to their counterparts. Consistent with the literature, this research finds that there is a greater positive effect in ETSE scores, as a result of participation in both research and internship experiences, for URM women than their majority counterparts. These preliminary results provide a foundation for further studies to causally investigate the link between academic experiences and self-efficacy levels for students who are underrepresented in engineering programs. Future implications of this work include the creation of targeted intervention efforts to increase support for all URM students’ access and participation in research and internship experiences. Additionally, this work seeks to challenge the bias towards monolithic interpretations of women and URM engineering students as separate categories and encourage intersectional perspectives when analyzing data to produce more inclusive results

Family Caregiver Partnerships in Palliative Care Research Design and Implementation.

Why was this research developed?: Autistic adults taking part in research do not always have good experiences. An autistic member on our team thought that a Research Passport could help improve people's experiences. This idea was inspired by "passports" or "toolkits" that autistic people can use when visiting professionals such as doctors (so the doctor knows about the person and how to support them).What does the Research Passport do?: The Research Passport lets autistic people tell researchers about themselves before taking part in a research study. Autistic people can decide how much, or how little, they tell the researcher. Autistic and/or nonautistic researchers can use the Research Passport to try and make sure that their autistic participants have good experiences when taking part in research.How did the researchers evaluate the Research Passport?: First, nine autistic adults (who did not have an intellectual disability) and six autism researchers took part in group discussions. We asked what they thought about our Research Passport idea and what it should include. We made a Research Passport mock-up based on these discussions. Nine autistic participants who did not have an intellectual disability used the mock-up in one of three university research projects. Autistic participants completed a survey to tell us good and not-so-good things about the Research Passport. Also, we interviewed three researchers about using the Research Passport (asking what they liked and what could have been better).What were the findings?: Autistic adults and researchers involved in designing the Research Passport thought the Research Passport (1) could be useful but could not solve all problems in autism research, (2) needed to be suitable for many different people, and (3) could have many different benefits (e.g., collecting participants' scores on tests that researchers use a lot, so participants do not have to keep doing the same tests each time they take part in a new research study).Autistic adults and researchers used the Research Passport in ongoing studies and told us that it (1) led to good relationships between participants and researchers, (2) helped researchers make sure that the way they did their research was acceptable, and (3) was useful. However, participants need to be told what the Research Passport can/cannot help them with.What were the weaknesses of this project?: This study involved a small group of autistic adults and researchers, and the results may not be the same with autistic adults and researchers who have different needs. Also, participants said the Research Passport was not very easy to complete, and a bit long. We need to change the Research Passport so that a wider range of autistic people (like those with intellectual disability) can use it.What are the next steps?: The Research Passport needs to be professionally designed so it is easier to be used by a wider range of autistic people. A bigger evaluation of the Research Passport could allow us to test it with more participants and in more research studies.How will this work help autistic adults now or in the future?: Using the Research Passport could, with some changes and alongside other supports, improve the experience of autistic adults taking part in research.

The Autism Intervention Research Network on Physical Health (AIR-P) has a strong emphasis on cultivating the next generation of researchers committed to promoting the health and well-being of autistic individuals across the lifespan. As we begin our roles as scientists on this ambitious project, we are confronted with the tension between aspects of research culture that are both progressive and dynamic and outdated and static, particularly in the autism field. As we reflect on the current state of the field, we increasingly recognize the importance of conducting interdisciplinary research and using participatory methods to ensure that our research will enhance health outcomes for autistic individuals.Throughout our short careers, it has become readily apparent that the research community recognizes, at least in name, the value of working on diverse interdisciplinary teams, particularly with respect to addressing complex public health issues.1 We are acutely aware, however, of traditional research culture wherein mentors have historically encouraged trainees to master a single focal area and protect it as their own.2 In effect, we continuously experience conflicting messages. On one hand, we are urged to identify a narrow area of expertise, pursue it with fervor, and work to establish our independence as researchers. On the other hand, our experience in autism research requires us to approach complex problems from multiple angles, cultivate a vast array of methodological and theoretical tools, and cull together diverse teams.We believe that an interdisciplinary approach to research is an asset to early-career investigators’ professional development and to the field. We urge mentors to encourage early-career investigators to learn from peers in other fields, even those that do not, at face value, appear complementary. In practice, autism researchers would collaborate with physicians and clinicians, social justice advocates, educators, and other leaders and stakeholders. We believe that these collaborations will promote out-of-the-box thinking and dismantle antiquated models that do not further the development of innovative, health-promoting research for autistic individuals.Researchers underscore the critical role of participatory methods for autistic individuals.3 However, a pervasive undervaluing of the role of lived experiences still exists in shaping research questions and methodologies, which translates into an additive approach wherein the stakeholder perspective is layered on top of the empirical research study rather than sought out at the beginning to inform the research process in a meaningful way. When participatory methodologies are secondary to the research study, researchers often position those with lived experience in tokenistic roles that do an injustice to their perspectives in the research process.One of the earliest developments within the AIR-P is the Autistic Researcher Review Board. This group of international autistic researchers is tasked with reviewing all studies that will be supported within the AIR-P and developing collaborative theoretical articles and empirical research studies that will advance the field. As the neurodiversity movement continues to gain traction and individuals with neurodivergence continue to serve as self-advocates and assume prominent leadership positions, we hope that participatory research becomes the status quo in autism research.We call on our peers, early-career investigators, as well as colleagues steeped in traditional research culture, to join us in placing a precedent on moving the field of autism research forward through interdisciplinary and participatory approaches. We look forward to collaborating with novices and experts across disciplines in developing and implementing research that is directly responsive to lived experiences in an effort to address our broader goal of having a robust impact on the health and well-being of autistic individuals across the lifespan.

Building the Pipeline: Surveying Medical Student Interest in Hematology and Rare Disease Research

This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings - involving four Autistic community leader members and three Autistic researchers - was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member 'field' notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.Lay AbstractIn recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other's sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights.

Objectives: Medical students are the bright future researchers and giving priority to their early research experiences will have its remarkable effect on research evolution. Recent advances in medical fields are challenging and increase the importance of attracting new researchers. This study describes knowledge, attitude, practice, and barriers to participation in research among undergraduate medical students. Methods: This is a cross-section study on 260 medical students. Data collected included: knowledge about research (nine multiple questions); attitude towards medical research (eight questions); practice of research (five questions) and barriers against participation in research (nine questions). Results: Some aspects of research knowledge were affected by students’ sex, previous year grade, academic phase, and premedical school type. About 44.6% gave right answers about parts of scientific papers. Academic phase medical students had better research knowledge than clinical phase students. More than 80% of study participants agree on the importance of being oriented about clinical research methodology. Lack of time was the most addressed barrier against participation in research projects by the students (50.5% of clinical phase students). Conclusions: Raising students’ awareness about the importance of research, improving students’ attitude, and removing barriers could improve their participation and experience in research.