'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children.

Background and aims: Participatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project. Methods: Using key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study. Results: We found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being. Conclusions: These findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners. Implications: This study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities.

Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers.

LAY ABSTRACT: A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work.

'Somali parents feel like they're on the outer': Somali mothers' experiences of parent-teacher relationships for their autistic children.

LAY ABSTRACT: Good relationships between parents and schools can improve autistic children's school success. There are many reasons why families from different cultural backgrounds find it harder to develop good relationships with schools, such as language barriers, discrimination and unfamiliarity with education systems. We know little about what 'good relationships' look like for these families. Here, we worked with a team of autistic and non-autistic researchers as well as an Advisory Group of Somali parents to conduct interviews with 15 Somali mothers of kindergarten and school-age autistic children. We asked mothers about their experiences of their child's education, communication with teachers and what a good relationship with schools would look like. We also asked how they felt the Somali community understood autism. We looked for common things that mothers said. We found that mothers were very proud of their children. They had high expectations, particularly about what children could do by themselves. Mothers found it frustrating that teachers had low expectations, that schools were not good at communicating with them and that autism-specific skills and experience were uncommon in schools. They also reported racist attitudes towards their children. Mothers experienced stigma and lacked resources, but support was gained from their daughters and their religion. Mothers themselves were proactively increasing community awareness and knowledge about autism in the hope that they and their autistic children would be valued and better supported. Our work has implications for how teachers and schools can work together with Somali parents to forge better futures for autistic children.

"Peas in a pod": Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults.

In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: 'conceptualising the Autistic family', 'creating Autistic community', and 'contesting Autistic identity'. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults.

"They Were Saying That I Was a Typical Chinese Mum" : Chinese Parents' Experiences of Parent-Teacher Partnerships for Their Autistic Children.

Effective parent-teacher partnerships improve outcomes for autistic students. Yet, we know little about what effective partnerships look like for parents of autistic children from different backgrounds. We conducted interviews with 17 Chinese parents of autistic children attending Australian kindergartens/schools to understand their experiences. Parents appreciated the acceptance, opportunities and supports they received in Australia. They had high expectations of children; expectations not often shared by educators. Parents were respectful of teachers' expertise and polite and undemanding in interactions. Nevertheless, parents were frustrated by inconsistent teaching quality and inadequate communication. Navigating systems was also challenging and parents faced discrimination from teachers and their community. Recommendations include fostering open home-school communication, proactively seeking parents' expertise about children and explicitly scaffolding parents' self-advocacy.

A capabilities approach to understanding and supporting autistic adulthood.

There is little comprehensive research into autistic adulthood, and even less into the services and supports that are most likely to foster flourishing adult autistic lives. This limited research is partly because autism is largely conceived as a condition of childhood, but this focus of research has also resulted from the orthodox scientific approach to autism, which conceptualizes autistic experience almost entirely as a series of biologically derived functional deficits. Approaching autism in this way severely limits what is known about this neurodevelopmental difference, how research is conducted and the services and supports available. In this Review, we adopt an alternative research strategy: we apply Martha Nussbaum's capabilities approach, which focuses on ten core elements of a thriving human life, to research on autistic adulthood. In doing so, we identify areas where autistic adults thrive and where they often struggle, and highlight issues to which researchers, clinicians and policymakers should respond. The resulting picture is far more complex than conventional accounts of autism imply. It also reveals the importance of engaging autistic adults directly in the research process to make progress towards genuinely knowing autism and supporting flourishing autistic lives.

"I Knew She'd Get It, and Get Me": Participants' Perspectives of a Participatory Autism Research Project.

Introduction: Autistic advocates and their supporters have long argued that conventional research practices provide too few opportunities for genuine engagement with autistic people, contributing to social disenfranchisement among autistic people. We recently described one attempt to develop and implement a participatory study in which a team of autistic and nonautistic researchers worked together to gather life histories from late-diagnosed autistic people. In the current study, we sought to understand the impact of this participatory approach on the participants themselves. Methods: We spoke to 25 Australian late-diagnosed autistic adults (aged 45-72 years), who had been interviewed by an autistic researcher using an oral history approach. We asked them about their experience of being involved in that project and the research process more broadly. We thematically analyzed participants' interviews. Results: Participants responded overwhelmingly positively to the opportunity to tell their life history, considering it illuminating and empowering. While recounting their life history was often described as "exhausting" and "draining," participants also reported feeling "supported all the way" and agreed "it was made easier because I had an autistic researcher interviewing me." One participant went so far as to say that they "probably would have dropped out [of the project] if it was run by people who weren't autistic." Conclusions: These findings demonstrate that the benefits of coproduction to researchers and community partners extend to study participants and to the quality of the research itself. Involving autistic partners in the research process, especially in its implementation, can play a crucial role in enhancing autism research.

Why is this an important issue?: Autistic people are often left out of decisions that affect them, including in research. We wanted to change that. We, a group of autistic and nonautistic researchers, worked together to come up with a research project. In that project, we wanted to know more about autistic people who were diagnosed late in their lives. What was the purpose of this study?: We wanted to know about their experiences of taking part in the research. We also wanted to understand what it was like for our study participants to tell their life story to another autistic person. What did we do?: We spoke to 25 autistic people about their experiences of telling their life history. We asked questions like, "Can you tell me a bit about why you wanted to share your life history?" and "What was your overall experience of taking part in this research project?" We interviewed participants for about 25 minutes. What were the results of the study?: We found that participants felt good about taking part in this project. They felt supported and were pleased that the project was being run by autistic people. They also told us that telling their story was often painful. However, it was made easier because they had an autistic researcher interviewing them. They also felt that they could share more with this person than with someone who was not an autistic person. What do these findings add to what was already known?: This study shows that research that is done together by autistic and nonautistic researchers has a positive effect on participants. What are the potential weaknesses in the study?: Most of our participants were well educated, White, and were in some form of work. We do not know if participants' positive experiences would also happen with other autistic people, including those from different cultural groups. This study was also unusual because it allowed participants to tell their own stories in their own way. That might have made participants more positive about it. How will these findings help autistic adults now or in the future?: These findings show how important it is to include autistic people in research. It makes a real difference to the participants and to the quality of the research.

'A way to be me': Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood.

LAY ABSTRACT: Using oral history methods, we interviewed and recorded 26 autistic adults in Australia about their life history. We wanted to better understand interviewees' self-reflections about their lives. The interviewers were autistic researchers and the interviews were analysed by autistic and non-autistic researchers. All of the adults we interviewed were born before 1975 and formally identified as autistic after age 35 years. This group of people is sometimes referred to as 'late-diagnosed autistic adults'. In general, there is not much research done about autistic adults and even less is known about those diagnosed late in life. In this article, we explore what these adults said about their sense of self and how that changed over time. These autistic adults told us about many negative experiences, including trauma, which had shaped how they think about themselves. For most, autism diagnosis had a very positive impact on their sense of self, allowing them to understand more about their own past and to feel good about their autistic identity. Previously some researchers have said that autistic people have a limited or impaired sense of self. Instead, our results show some autistic people can actually reflect deeply on their lives and their changing sense of self-identity over time.

Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology.

INTRODUCTION: Receiving a diagnosis of autism in adulthood is increasingly common for a subset of individuals who were either misdiagnosed in childhood or missed out on a diagnosis altogether. This qualitative study, coproduced with autistic people, invites late-diagnosed autistic adults to share their life histories to (1) understand better the consequences of living without a diagnosis, (2) elucidate what precipitates an autism diagnosis in mid-to-late adulthood and (3) identify the perceived impact of receiving that diagnosis. METHODS AND ANALYSIS: Oral histories have been a successful way to uncover overlooked and marginalised voices. We therefore adopt qualitative, oral history methodology in this study to understand these adults' experiences, especially of living in an era when autism was not well known. We will recruit 24 participants who will (1) have been born before 1975, (2) have received a clinical, autism diagnosis after the age of 35, (3) be English-speaking and (4) have spent most of their childhood and adulthood living in Australia. Participants will take part in four sessions, including the main, qualitative, oral history interview, through a range of possible formats to facilitate inclusion. The interview data will be analysed using reflexive thematic analysis. ETHICS AND DISSEMINATION: The protocol has received institutional research ethics approval from Macquarie University's Human Research Ethics Committee (Ref.: 52019556310562). This study will yield understanding of the life experiences of autistic adults, especially middle-aged and older Australians, should inform more effective diagnostic practices and provide insight into the key factors that might promote resilience and enhance quality of life in autistic people. The findings will be disseminated to academic and clinical audiences through journal articles and conference presentations and to the autistic and autism communities through accessible reports. The interviews will also be prepared for digital archiving, which will enable ongoing access for future generations and communities.

Inclusion, acceptance, shame and isolation: Attitudes to autism in Aboriginal and Torres Strait Islander communities in Australia.

LAY ABSTRACT: There has been almost no research done about autism in Aboriginal and Torres Strait Islander communities in Australia. This article is the first detailed report on attitudes to autism in these communities. Understanding attitudes to autism is important because they influence whether or not children are diagnosed, as well as the kinds of support autistic people are getting. Twelve families who lived in different parts of Australia were interviewed. They told us that there is a range of attitudes to autism in Aboriginal and Torres Strait Islander communities. These include negative ideas such as sometimes feeling shame associated with children's unusual behaviour, as well as feeling stigmatised and socially isolated. The negative attitudes reported may mean that some children are missing out on an autism diagnosis or being wrongly diagnosed with a different condition in these communities. They also included positive ideas such as the importance of looking after each other and of accepting autistic people and their differences. We can all learn from these positive attitudes. It will be interesting to know in future projects whether these accepting attitudes lead to better outcomes for autistic children and adults in these communities. This research helps us to understand how autism is thought about in different cultures and how attitudes impact diagnosis and support. It will also help people to plan supports that reflect what Aboriginal and Torres Strait Islander families actually want and need.