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Effective parent-teacher partnerships can improve outcomes for autistic students. Yet, we know little about what effective partnerships look like for parents of autistic children from diverse backgrounds. Using participatory methods, we conducted semi-structured interviews with 15 Somali mothers of autistic children attending Australian kindergartens/schools to understand experiences of parent-teacher interactions. We used reflexive thematic analysis to identify key themes. We found that mothers were proud and accepting of their children. They had high expectations, particularly around children's independence. Mothers wished their children's differences were understood and supported by other people, including teachers. They were frustrated by low expectations of children, a lack of genuine communication from teachers and limited autism-specific knowledge, skills and experience within schools. They described racist attitudes towards their children and reported that they themselves had experienced stigma. They also had few sources of support to rely upon, although their non-autistic daughters and their faith were important foundations for resilience. Despite all of these challenges, mothers themselves were increasing community awareness and knowledge about autism in the hope that they and their children would be valued by others. Our work has implications for how teachers and schools can foster successful relationships with Somali parents of autistic children.

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.

In this article, we report on an oral history study documenting the lives of autistic adults in Australia. This qualitative study, co-produced with autistic researchers, offers insight into the lived experiences of autistic adults diagnosed in mid-to-late adulthood. Oral history methodology was utilised to understand the experiences of autistic adults who grew up in an era before autism was well-known. The 26 interviewees were born before 1975, receiving a clinical autism diagnosis after age 35 years. All interviews were conducted by autistic researchers, transcribed and thematically analysed by a team of autistic and non-autistic researchers using the six-step process outlined by Braun and Clarke. We identified four themes relating to perceptions of the self: being different, exploring identity, the suffering self and being Autistic. Some interviewees reported a direct relationship between trauma, negative self-conceptions and suffering. For most, formal diagnosis had positive impacts on sense of self, contributing to a greater focus on strengths. Contra research suggesting autistic impairments in self-awareness, these interviewees demonstrated a deep capacity for self-reflection, highlighting the variability of autistic lives and the socio-historical contexts that shape individual biographies, including experiences of stigma and discrimination as well as the empowering potential of identifying as autistic.

This is the first qualitative study to investigate experiences of, and attitudes towards, autism in Aboriginal and Torres Strait Islander communities in Australia. Understanding the complexity of these attitudes is crucial because they influence the recognition of autism as well as the ways in which individuals and families are supported. Twelve families with 16 autistic children living in diverse regions of Australia participated in a semi-structured interview. The interviews were thematically analysed using the six-step process outlined by Braun and Clarke. The analysis identified a marked tension in participants' accounts. On the one hand, participants described negative feelings, including shame associated with atypical behaviour, stigmatisation and the social isolation of families, which potentially point towards under-identification or misdiagnosis. On the other hand, they also described inclusive attitudes, including 'looking after each other' and a growing acceptance of autistic differences. This positive model of support for and acceptance of autistic children and their families may well contribute to good outcomes for autistic children and adults in Aboriginal and Torres Strait Islander communities. More research is needed on cross-cultural and pluralistic understandings of autism, parental perceptions and family experience.

There has been intense debate within the autistic and autism communities about the use of autism biobanks – repositories containing biological and phenotypic materials – and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource. 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. [ABSTRACT FROM AUTHOR]

This article investigates the experiences of students diagnosed with autism who change schools during the early primary years in New South Wales (NSW), Australia. Using the narratives of eight mothers, the article documents the circumstances leading to school change, usually towards more segregated provision. Mothers highlighted the difficulty of these school transitions and the family distress that often prompted change. The eight cases of school change that are analysed provide a stark picture of the extent to which Australian schools are unable to adapt to these students. Rather than searching for the causes of these difficulties in the behaviour of students, it is argued that we need to look at the pattern of deficits found in classrooms and schools, as described by concerned mothers. In this article the pattern is referred to as Autism Inclusion Disorder. The defining features of this disorder are the co-presence of persistent school deficits in social communication/interaction (including teacher inability to interact with students) and school restricted and repetitive behaviours (such as rigid adherence to negative behaviour management). Maternal school change narratives suggest that for a genuinely inclusive education system to develop more attention should be directed towards changing schools rather than changing children to fit traditional classrooms.

This article explores the pivotal role of rumour in shaping primary school choice decisions for parents of children diagnosed with autism. Drawing on semi-structured interviews with 22 mothers conducted in Sydney, Australia, this study points to the varied functions of grapevine knowledge about schools gleaned in diverse contexts, including early intervention settings, support groups and neighbourhood communities. Parents, especially mothers, provide one another with pragmatic information about schools as well as advice on how the education "system" works. They also repeat "horror" stories of bullying incidents and social exclusion that have a powerful affective force. Educational sociologists have referred to this as "hot" knowledge. These data demonstrate the need for more detailed analyses of hot knowledge in understanding how families of children diagnosed with autism make choices between segregated and mainstream education options, as well as deciding on particular schools or classrooms within the various sectors of the education market. In studying these processes, we gain a better understanding of how mothers negotiate multiple forms of knowledge during periods of school transition and of the importance of this process in forging maternal identity. The qualitative research presented helps us to conceptualise broader processes of social inclusion and exclusion experienced by these families.

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. [ABSTRACT FROM AUTHOR]

This article explores the different forms of professional guidance negotiated by mothers as they search for a primary school placement for their child diagnosed with autism. The intensely contested terrain of whether segregated or "regular" classrooms would be "better" for the child shapes the contours of both professional guidance and maternal decision-making. Interviews with 22 women whose children were about to start primary school in Sydney, Australia, allows an exploration of the ways women engage with or reject professional guidance, offered by paediatricians, psychologists, early intervention professionals, and education providers. Mothers frequently received conflicting professional guidance, and felt conflicted about their schooling decisions, especially when students are labelled "borderline." Overall, recent suggestions of a democratisation of autism expertise are not supported by this research, which underlines the need to analyse both the agency of mothers and the power differentials that continue to exist between families and experts.

This article draws on the first qualitative research on lived experiences of autism in Aboriginal and Torres Strait Islander communities in Australia. Twelve women supporting 16 autistic children living in remote, regional and urban areas of Australia participated in a semi-structured interview. Through thematic analysis, we identified four focal themes in women's conceptualisation of the practical work of mothering autistic children. These are (i) navigating a complex autism system to 'achieve' diagnosis and connect to culturally-safe services and supports; (ii) helping children to learn to live in the big world by engaging in everyday care and enhancing capacities; (iii) protecting children by keeping them safe, dealing with stigma and respecting individuality and; (iv) asserting family belonging by emphasising children's strengths, encouraging extended family relationships and advocating for others. Listening to these marginalised voices is vital to establishing a participatory research agenda in a field that has received inadequate attention. This is the first research on lived experiences of autism in Aboriginal and Torres Strait Islander communities in Australia. Twelve women from remote, regional and urban areas spoke about their experiences of loving and supporting their autistic children. Women talked about the practical work of mothering their autistic children including achieving autism diagnosis, trying to access culturally safe services and supports, undertaking everyday care needs and enhancing capacities and abilities. Women emphasised children's strengths and their belonging in community; they were very concerned with protecting them and keeping them safe in the context of intersecting racist and ableist attitudes. More participatory research on autism within Aboriginal and Torres Strait Islander communities is urgently needed. [ABSTRACT FROM AUTHOR]

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