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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]

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. [ABSTRACT FROM AUTHOR]

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]

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. 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. [ABSTRACT FROM AUTHOR]

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]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 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. [ABSTRACT FROM AUTHOR]

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 middleaged 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. [ABSTRACT FROM AUTHOR]

A correction is presented to the article "They Were Saying That I Was a Typical Chinese Mum": Chinese Parents' Experiences of Parent–Teacher Partnerships for Their Autistic Children."

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. [ABSTRACT FROM AUTHOR]

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. [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. [ABSTRACT FROM PUBLISHER]

In this article I analyse maternal narratives of informal school exclusion at the point of transition into primary school in Sydney, Australia. The common thread that connects these narratives is the experience of stigma. Some scholars have argued that the link between stigma and disability is weakening. The material presented here, drawn from interviews with 22 mothers of children with autism, gives a picture of the continuing pervasive stigmatisation of children with autism and their mothers, as well as a systemic failure of all sectors of the education system in Australia to meet the promises of policies of school inclusion. [ABSTRACT FROM AUTHOR]

In this article I analyse maternal narratives of informal school exclusion at the point of transition into primary school in Sydney, Australia. The common thread that connects these narratives is the experience of stigma. Some scholars have argued that the link between stigma and disability is weakening. The material presented here, drawn from interviews with 22 mothers of children with autism, gives a picture of the continuing pervasive stigmatisation of children with autism and their mothers, as well as a systemic failure of all sectors of the education system in Australia to meet the promises of policies of school inclusion. [ABSTRACT FROM PUBLISHER]

This paper draws on the narratives of Australian mothers of pre-school children with autism as they struggle to make sense of, and sometimes resist, diagnosis. My analysis investigates the conflict and collusion between professional and maternal expertise. In the process of giving meaning to their grief, mothers frequently focus on the strengths of their children and the value of their own intimate expertise, which is grounded in a recognition of the full personhood of their child. While mothers frequently perceive their children through the shaping lens of diagnostic criteria, maternal counter-narratives allow a temporary disidentification from the diagnostic process and, in their valorisation of mother/child attachments, are an important source of personal and familial resilience. [ABSTRACT FROM AUTHOR]

The field of autism interventions, as well as advice given to parents on educating children with autism spectrum disorders, is characterized by competing claims and controversy. This article compares two events targeted at parents, both of which were staged on the same weekend in Sydney, Australia, in 2007. One centered on applied behavioral analysis, holding out the promise of potential normalization for children with autism and their families. The other, mobilizing civil rights rhetoric, pushed for the full educational inclusion of all children with disabilities. This article investigates the assumptions underlying these varied positions and assesses some of the ways in which parents, especially mothers, make sense of and situationally negotiate these often emotionally charged claims and counter-claims. [ABSTRACT FROM AUTHOR]

Several letters to the editor are presented in response to the article "On the Referee System As a Barrier to Global Anthropology" published within the issue.

This essay is concerned with the political, historical and cultural contexts of teaching and learning in Hong Kong, focusing on my recent experiences of tertiary teaching there. Although an emphasis on rote learning driven by an exam oriented educational trajectory is now widely criticised, strong institutional and social forces still operate to produce a student body highly resistant to radicalising discourses. I argue that cultural indifference, chauvinism and racism pervade the classroom, posing particular challenges for anthropological pedagogy. [ABSTRACT FROM AUTHOR]

This paper investigates the efforts to exteriorise and communalise Hong Kong in the public celebrations marking the 1997 ‘handover' from British to Chinese rule. Using Bhabha's notion of the colonial stereotype, I document the importance of commodifying history and the fusion of both epitaphs to Empire and invocations of Chinese nationalism as twin forms of colonialism. The repetition of stereotypes is traced to a transnational logic aimed at marketing events to a global television audience. I conclude that the dominant representational reliance on repetition functioned to prolong the constitutive anxieties provoked by the handover, preserving them in the public domain. [ABSTRACT FROM AUTHOR]

Presents a feminist analysis of a theatrical production, `Chronicle of Women' staged in Hongkong in 1995 by the group, Zuni Icosahedron, showing a highly-nuanced representation of gendered colonial subjects. Political relevance of the production; Script format; Symbolic representations of the stage design and characters; Considerations of female subjectivity and women's issues.

In Hongkong, local identity is muted not only by the master narrative of 'history of Europe', but by that of 'Chinese history' and 'Chinese civilization'. This comprises a 'double bind' on those who write and present drama, and the dance. This paper examines the way in which the two master narratives both conflict and assist one another in the elite performing arts. It points a schematic model which tries to take account of the self-conscious efforts of some local intelligentsia to insert a specifically Hongkong dimension between the two master narratives. This cultural refiguration has much to do with the sense of instability and concern for the future which has recently gripped the island. [ABSTRACT FROM AUTHOR]

The article focuses on changes to be made to the periodical "Australian Journal of Anthropology" for 2009.