Article

Navajo and autism: The beauty of harmony

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Abstract

With so much unknown about autism, the disability tends to reflect the sociocultural preconceptions people project onto it. The predominant narrative in Western society of autism as a ‘disease’ within the medical model contrasts with the more positive, empowering view of autism as a ‘difference’ in the social model and neurodiversity movement. Society has also discriminated against and disabled the Navajo Native Americans since the arrival of Euro-Americans. Navajos resiliently balance between exercising self-determination within their own nation and adapting to outside society, with a culture that remains remarkably intact. The Navajo thus presented exceptional opportunity for cross-cultural analysis. It suggested that the traditional Navajo social constructs of harmony and beauty, as encompassed by a wellness philosophy called Hozho, better serve the needs of Autistic people than the Western notion of ‘progress’ through science and technology.

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... Although ASD prevalence is reported to be rising globally, autism appears to be under-detected among First Nations children in BC, Canada (Lindblom, 2014). In a review of publications on Indigenous Peoples and ASD in the global context, possible reasons for under-detection of autism could possibly be diagnostic substitution (Coo et al., 2008), symptom representation (Roy & Balaratnasingam, 2010), ethnic or cultural, or effects of historical discrimination (Anthony, 2009;Begeer, Bouk, Boussaid, Terwogt, & Koot, 2009;Bernier, Mao, & Yen, 2010;Burstyn, Sithole, & Zwaigenbaum, 2010;Kapp, 2011;Kim, 2012;Leonard et al., 2011;Mandell & Novak, 2005;Mandell et al., 2009;Ouellette-Kuntz et al., 2006;Roy & Balaratnasingam, 2010;Tincani, Travers, & Boutot, 2009). In conclusion, I noted, It is essential that barriers of ethnic bias, discrimination and the impact of historical oppression are eliminated to ensure that First Nations and other aboriginal children with autism have the possibilities to reach their full potential and that their rights are recognized and respected. ...
... (Lindblom, 2014, p. 1,257) There are two publications on specific Indigenous Peoples, their worldviews, and autism. One is about the Navajo in the USA (Kapp, 2011), and the other concerns the Māori context in New Zealand (Bevan-Brown, 2013). Indigenous Peoples are diverse and views cannot be generalized. ...
... However, these examples can broaden the understanding of how worldviews can affect the life of a First Nations child with ASD. Kapp (2011) explains Navajo philosophy as favorable for individuals with ASD as there is an acceptance of diversity. Furthermore, Western culture is described as disabling and the Navajo culture as empowering. ...
Article
This research project set out to examine the meaning of music for five First Nations children diagnosed with autism spectrum disorder in British Columbia, Canada. A pan-tribal framework within an Indigenist research paradigm was used. Data were collected during visits in 2013 and 2014. Five First Nations children with different tribal affiliations and living locations, their families, and professionals were engaged in the project. Methods were conversations, observations, filmed observations, interventions, and notes. It was found that current autism discourses and practices are based on a deficit model within Western paradigms, and therefore not compatible with inclusive, First Nations worldviews and perceptions of autism representations. Music is used for purposes such as relaxation, communication, and when studying. Indigenous music is not used in targeted music interventions. This article presents unique material, emphasizing the lack of cultural sensitivity, and colonial residue in music interventions for First Nations children with autism.
... There are no timescales or deadlines, and appropriate behaviour can take as long as necessary (and we have seen in chapter two that children with autism can take longer to reach emotional milestones). Where disability is severe, adults are often seen as still children and not expected to make any contribution (Kapp 2011). ...
... However, individuals with autism also benefit in more subtle ways from the group imposition of firm pro-social rules. Using the example of the Navajo, Steven Kapp (2011) argues that encouraging responsibility (rather than removing autonomy through labels of disability) and encouraging appropriate behaviour in firm ways make small scale hunter-gatherers societies far more supportive places for the integration of individuals with autism. ...
... Our culture doesn't only affect how we behave but also how we feel about ourselves. Living within societies with strict egalitarian ethics and no concept of 'disability', individuals with autism will not have felt different or any less valued than others (Kapp 2011). More than this, however, concepts of self are different in small scale hunter-gatherers. ...
Chapter
Is autism part of what makes us ‘human’ today? Autism has traditionally been seen as a condition of people somehow outside society. However recent research has challenged this view, suggesting in contrast that autism is part of the processes that allow societies work together. In the light of the potential value of autistic insight and action in certain contexts it is possible to view the archaeological record rather differently. Rather than a progressive sophistication of a single human ‘mind’, a more plausible explanation for much of the patterning in the archaeological record is as the marked emergence of autistic traits within a modern ‘humanity’ made up of complex interrelationship between different minds.
... There are no timescales or deadlines, and appropriate behaviour can take as long as necessary (and we have seen in chapter two that children with autism can take longer to reach emotional milestones). Where disability is severe, adults are often seen as still children and not expected to make any contribution (Kapp 2011). ...
... However, individuals with autism also benefit in more subtle ways from the group imposition of firm pro-social rules. Using the example of the Navajo, Steven Kapp (2011) argues that encouraging responsibility (rather than removing autonomy through labels of disability) and encouraging appropriate behaviour in firm ways make small scale hunter-gatherers societies far more supportive places for the integration of individuals with autism. ...
... Our culture doesn't only affect how we behave but also how we feel about ourselves. Living within societies with strict egalitarian ethics and no concept of 'disability', individuals with autism will not have felt different or any less valued than others (Kapp 2011). More than this, however, concepts of self are different in small scale hunter-gatherers. ...
Book
Full-text available
Were individuals with autism influential thousands of years ago? In this ebook we ask what technological and innovative skills, moral qualities and other contributions autism might have brought to human societies, and consider the archaeological and anthropological evidence for the influence of autism in prehistoric art and artefacts. In light of our findings, we argue for a new perspective on autism spectrum conditions and their integration in modern society.
... Using the keywords prevalence, aboriginal, culture, ethnicity, indigenous and British Columbia Canada in combination with autism, international databases were searched to find relevant peer-reviewed publications. None of the publications included First Nations children in BC diagnosed with autism and only one paper about First Nations and autism was found (Kapp, 2011) ...
... In Australia Leonard et al. (2011) found that aboriginal mothers are less likely to have a child with ASD than a caucasian mother and that due to the complexity of the diagnosing process of ASD that aboriginal children may more readily be diagnosed with intellectual disability, (2010) According to Kapp (2011) the Navajo nation has a wellness philosophy that is beneficial for full inclusion and therefore has many qualities that are autism friendly. Viewing a person with autism from a Western society's perspective, they have a disease, whereas the Navajo culture has acceptance for diversity. ...
... The belief that the Creator pre-determines the identities of people helps the Navajo, with and without autism, with their self-worth and the parenting style of being a positive role model instead of disciplining suits the learning styles of people with autism. Furthermore Kapp (2011) notes that society has discriminated and disabled both Navajo and other aboriginal people, and individuals with autism, raising the issues of condescending stereotyping of both groups and forcing aboriginal children to boarding 7 schools and segregating children with autism to special educational settings. Tincani et al. (2009) andBernier et al. (2010) state that labels such as autism or other disabilities may not exist in certain cultures. ...
Article
Full-text available
This article shows that First Nations children diagnosed with autism in British Columbia, Canada are under-represented in publications regarding autism and the prevalence thereof, and that this group appears to be under-detected. The aim of this review of publications regarding autism and aboriginal populations in Canada and other countries is to examine possible explanations. The research review results suggest that possible reasons for under-detection of autism among aboriginal populations, and consequently First Nations peoples, can be diagnostic substitution and symptom presentation, ethnic or cultural, area of residence or the impact of historical oppression and discrimination.
... There are no timescales or deadlines, and appropriate behaviour can take as long as necessary (and we have seen in chapter two that children with autism can take longer to reach emotional milestones). Where disability is severe, adults are often seen as still children and not expected to make any contribution (Kapp 2011). ...
... However, individuals with autism also benefit in more subtle ways from the group imposition of firm pro-social rules. Using the example of the Navajo, Steven Kapp (2011) argues that encouraging responsibility (rather than removing autonomy through labels of disability) and encouraging appropriate behaviour in firm ways make small scale hunter-gatherers societies far more supportive places for the integration of individuals with autism. ...
... Our culture doesn't only affect how we behave but also how we feel about ourselves. Living within societies with strict egalitarian ethics and no concept of 'disability', individuals with autism will not have felt different or any less valued than others (Kapp 2011). More than this, however, concepts of self are different in small scale hunter-gatherers. ...
Book
https://roundedglobe.com/books/9673edbf-0ba5-47b1-97bd-16ef244fd148/The%20Prehistory%20of%20Autism/
... A number of commentators have suggested that Indigenous peoples have fundamentally inclusive attitudes towards autistic people based on cultural values of acceptance and support of all community members (Avery 2018;Bevan-Brown 2013;Kapp 2011). In a qualitative study of attitudes towards autism in Aboriginal and Torres Strait Islander communities in Australia, we have argued that socially-inclusive attitudes and autism acceptance exist alongside experiences of social isolation, shame and stigmatisation (Lilley, Sedgwick, and Pellicano 2020). ...
... This attitude of respect encompassed a sensitivity to children's preferences and conveying a positive view of autism, based on a construct of neurological difference, to others. our participants specifically connected this respect for individuality to an acceptance of many forms of difference in Aboriginal and Torres Strait Islander communities, sometimes described in the literature as an inclusive ethos common to First Peoples (Avery 2018;Bevan-Brown 2013, Kapp 2011). More specifically, Vicary and Westerman (2004) have argued that Aboriginal beliefs about mental health do not conform to Eurocentric perceptions because differences are viewed as part of someone's innate character rather than as pathological conditions that require treatment. ...
Article
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.
... Disparities in Indigenous peoples' access to autism diagnosis and supports has also been documented in the United States (Di Pietro & Illes, 2014). Other scholars have addressed how core cultural values of Māori in New Zealand (Bevan-Brown, 2013) and Navajo Native Americans (Kapp, 2011) support the inclusion of family members with developmental disabilities, including autism, providing a positive framework that encourages the provision of culturally appropriate care across the lifespan. ...
... Avery (2018), for example, has described a widespread Aboriginal "culture of inclusion" in relation to people with disabilities. An inclusive ethos towards autistic people has also been reported in other indigenous contexts, including amongst Māori (Bevan-Brown, 2013) and Navajo (Kapp, 2011) peoples. ...
Article
Full-text available
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.
... Although this did not necessarily entail superiority of numbers, it 'involved structural, cultural, economic and political domination' (Meekosha 2011, 671) that has shaped the lives of an estimated three-quarters of the global population (Ashcroft, Griffiths, and Tiffin 1989). It has been argued that the dominative processes of colonisation are at the crux of the disablement of Indigenous people around the world (Kapp 2011;Meekosha 2011). Hollinsworth (2013) provides a powerful example of this in his overview of the relationship between the brutal history of British settlement of Australia from 1788 and disability among Indigenous Australians. ...
Article
Full-text available
Disability among Indigenous Australians lies at a nexus between the ongoing impact of European settlement from 1788 and the social effects of living with a disability. Colonisation, with its political, social, economic and cultural concomitants, continues to impact on Indigenous experience, extending to the institutions and services concerned with disability. There is little attention paid to Indigenous Australian disability in general, and the need to decolonise disability has recently been emphasised. Ethnographic research in Brisbane, Australia among Indigenous people with a disability (mostly related to diabetes) confirms the ongoing impact of colonisation. While this experience pervades all aspects of their lives, it also moderates their experience of living with a disability in positive ways. However, while individuals can negotiate their personal experience of disability, the decolonisation of disability services presents challenges that need to be addressed.
... One issue is that social robots are promoted through a medical/negative narrative of disabled people such as people labelled as having ADHD or autism (Yumakulov et al. 2012). It clearly views the interventions of the social robot as therapeutic negating a neutral or positive language around disabled people such as people labelled as having autism and ADHD as proposed by the neurodiversity movement (Broderick and Ne'eman, 2008;Robertson and Ne'eman, 2008;Kapp, 2011;Runswick-Cole, 2014;Waltz, 2014;Baker, 2006;Griffin and Pollak, 2009;Billawala and Wolbring, 2014). It reinforces the existing negative perception of disabled children in the Global South and elsewhere. ...
Article
Full-text available
Products of scientific and technological developments are emerging at an ever increasing speed whereby these developments impact the daily life of humans in numerous ways. We focus for this paper on two classes of emerging products; one being social robots and the other being products that are envisioned to increase the cognitive abilities of humans beyond the species-typical and their impact on aspects of childhood such as education and self-identity formation. We analyse the utility and impact of these two classes of products through the lens of the alternative report on India to the Convention on the Rights of the Child (CRC) Committee on the Rights of Children authored by the by National Disability Network of India and the lens of ability expectations. We posit that the discourses around these two classes of emerging products do not address the problems the alternative report raises, but could heighten the problems identified by the report. We believe the two classes of products highlight the need for ability expectation governance
... Many models have been developed to predict product acceptance. We will use the following models to focus on the user acceptance of social robotics, BMI, and neuro and cognitive enhancements: consumer theory [85][86][87][88]; innovation diffusion theory (IDT) [89][90][91][92]; theory of reasoned action (TRA) [93][94][95][96][97][98][99]; theory of planned behaviour (TPB) [100][101][102][103]; social cognitive theory (SCT) [104][105][106][107][108]; self-determination theory (SDT) [109][110][111][112][113][114][115][116][117]; technology of acceptance model (TAM) [118][119][120][121][122][123][124][125][126]; Unified Theory of Acceptance and Use of Technology (UTAUT) [127][128][129][130][131][132][133][134][135][136][137]; UTAUT2 [138]; model of PC utilization (MPCU) [137,139]; and motivational model (MM) [137]. Consumer theory is defined as the relationship between consumer preference of goods and services and expenditure; grounded in sociology, the IDT model -emphasizes the process by which an innovation or new knowledge is accepted or rejected by a particular group or organization over time‖ [91]; TRA model is based on the social psychology of human behavior and is used to predict behaviors according to an individual's attitude toward the behavior (positive or negative feelings) and subjective norm (whether a behavior should or should not be performed according to the individual's perception of what people closest to them think); TPB is an extension of the TRA model with the inclusion of perceived behavioral control which -refers to people's perception of the ease or difficulty of performing the behavior of interest‖ [97]; SCT looks at the relationship between individual behavior, the environment, and people that influence an individual's acquisition and maintenance of behavioral patterns; SDT refers to the intrinsic (e.g., inherent satisfaction, personal interest) and extrinsic factors (e.g., compliance, rewards/punishment) for motivation; TAM is the perceived usefulness and ease of use that influence an individual's acceptance and use of technology; UTAUT refers to how well new technology will be embraced by users based on the factors of performance expectancy, effort expectancy, social influence and facilitating conditions moderated by gender, age, experience and voluntariness of use [138]; UTAUT2 is an extension of UTAUT including hedonic motivation (i.e., perceived enjoyment), price value, and experience and habit without voluntariness as a moderating variable [138]; MPCU is derived from TRA and TPB with a competitive construct to predict user behavior of PCs; and MM refers to intrinsic and extrinsic motivational factors to understanding user adoption of new technology. ...
... Many models have been developed to predict product acceptance. We will use the following models to focus on the user acceptance of social robotics, BMI, and neuro and cognitive enhancements: consumer theory [85][86][87][88]; innovation diffusion theory (IDT) [89][90][91][92]; theory of reasoned action (TRA) [93][94][95][96][97][98][99]; theory of planned behaviour (TPB) [100][101][102][103]; social cognitive theory (SCT) [104][105][106][107][108]; self-determination theory (SDT) [109][110][111][112][113][114][115][116][117]; technology of acceptance model (TAM) [118][119][120][121][122][123][124][125][126]; Unified Theory of Acceptance and Use of Technology (UTAUT) [127][128][129][130][131][132][133][134][135][136][137]; UTAUT2 [138]; model of PC utilization (MPCU) [137,139]; and motivational model (MM) [137]. Consumer theory is defined as the relationship between consumer preference of goods and services and expenditure; grounded in sociology, the IDT model -emphasizes the process by which an innovation or new knowledge is accepted or rejected by a particular group or organization over time‖ [91]; TRA model is based on the social psychology of human behavior and is used to predict behaviors according to an individual's attitude toward the behavior (positive or negative feelings) and subjective norm (whether a behavior should or should not be performed according to the individual's perception of what people closest to them think); TPB is an extension of the TRA model with the inclusion of perceived behavioral control which -refers to people's perception of the ease or difficulty of performing the behavior of interest‖ [97]; SCT looks at the relationship between individual behavior, the environment, and people that influence an individual's acquisition and maintenance of behavioral patterns; SDT refers to the intrinsic (e.g., inherent satisfaction, personal interest) and extrinsic factors (e.g., compliance, rewards/punishment) for motivation; TAM is the perceived usefulness and ease of use that influence an individual's acceptance and use of technology; UTAUT refers to how well new technology will be embraced by users based on the factors of performance expectancy, effort expectancy, social influence and facilitating conditions moderated by gender, age, experience and voluntariness of use [138]; UTAUT2 is an extension of UTAUT including hedonic motivation (i.e., perceived enjoyment), price value, and experience and habit without voluntariness as a moderating variable [138]; MPCU is derived from TRA and TPB with a competitive construct to predict user behavior of PCs; and MM refers to intrinsic and extrinsic motivational factors to understanding user adoption of new technology. ...
... Miles (2003) writes: "There is a growing menace of simplistic globalised packages, promoted by deeply confused 'flying experts', ignoring or dismissing the indigenous concepts, knowledge and skills that are essential to success in disability service innovation ' (p.1) With the aim to further test the social model cross culturally, Kapp (2011) makes an analysis of people defined in the minority world as socially disabled (people within the autism spectrum) and people who even lack a word for disability (the Navajo). He concludes that Navajo society seems to be a much better place for people within the autistic spectrum and that minority world cultures are much more disabling. ...
Article
There is a strong controversy of how disability should be understood and if the models suggested in the minority world can or should be used in other places. Is the social model as relevant to the disabled people in the majority world as it is to disabled people in the minority world? It is exactly part of this controversy that we will try to examine in this paper. This article will begin by defining key concepts relevant to the discussion and following that it will address issues and ques-tions raised by critics of the social model and some answers to them. First, we will examine whether the dominance of the minority world has resulted in a "colonization" of ideas and practices on the majority world (including the social model approach). Secondly, reference will be made to the social model of disability, and whether it is or is not ignoring what impairment means for disabled people in the majority world. Thirdly, an analysis of whether it is relevant to apply the social model of disability in the majority world; is the issue of poverty forgotten? Is survival a first priority for disabled persons in some places? A brief analysis of the links between poverty, impairment and disability will be presented.
... Additionally, cultural ideologies are influential in shaping normalcy and in recognising the needs of people with autism. For example, an appreciation of non-Western ideas regarding disability may offer greater inclusion for people with autism than Western medical models allow (Kapp 2011). ...
Article
The opposing positions of the social model of disability and the biomedical framework of impairment have created tensions regarding what constitutes 'normality'. In this article, we drew upon focus group data of parents, professionals, and people with autism, to explore how the dilemmatic tensions of normality and abnormality and of disability and ability were managed. Our findings illustrate how the boundaries of normality in relation to autism are blurred, as well as how the autistic identity is fluid. The members of the focus group invoked their epistemic rights to assert their positions and delicately considered the limitations of the rhetoric of cure. Our findings have implications for professionals working with families of children with autism, specifically as they aim to maintain a balance between providing sufficient support and not being intrusive, and we show how a medical sociology can facilitate an understanding of autism as a social category.
... Indeed, the entire neurodiversity movement could be seen as a response to such a way of being and emergent cultures being wholly pathologised within a medical model perspective: … right from the start, from the time someone came up with the word 'autism' , the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced. ( Williams 1996, 14) Despite the growth of the neurodiversity movement and autistic scholarship ( Arnold 2012;Kapp 2011;Murray, Lesser, and Lawson 2005;Robertson 2010), the amount of influence that such work, or indeed sociological or critical theory, has had on the field has been limited ( McWade, Milton, and Beresford 2015;Milton and Bracher 2013;Pellicano, Dinsmore, and Charman 2013). Recently, I coined the neologism 'psychsplaining' to try and account for the way those categorised by psych-professionals are often reduced within such relationships to that of the 'sick role' ( Parsons 1951), with one's own interpretations of oneself undermined by the 'expert knowledge' being projected upon the autistic person, who by default is positioned in a relatively powerless social position of medical 'patient' . ...
Article
This brief commentary piece looks to apply the theories of Iris Marion Young to the social position and oppression of autistic people, as previously theorised by Milton. The concepts of ‘Asymmetrical symmetry’ and the ‘Five faces of oppression’ are explored in this regard. The article concludes by arguing that autistic people, particularly those who have significant intellectual impairments, can be socially marginalised to the extent of occupying the social position of ‘non-human’ with the staggering consequences for social well-being that this implies.
... When groups who are in opposition of germline gene editing use the medical narrative as their supporting argument, it ignores that what is seen as medical is based on contested ground (see for example [62][63][64][65]68,70,[82][83][84][85][86][87][88][89][90][91][92]) and it ignores the potential negative consequences that come with a medical label. It may be advantageous for parties that want to push germline gene editing to use the medical narrative; however, the use of the medical narrative by groups with a social justice angle to support their case against germline gene editing seems contradictory to their social justice focus and cause. ...
Article
Full-text available
open access http://www.mdpi.com/2075-471X/5/3/37/pdf
... Additionally, cultural ideologies are influential in shaping normalcy and in recognising the needs of people with autism. For example, an appreciation of non-Western ideas regarding disability may offer greater inclusion for people with autism than Western medical models allow (Kapp 2011). ...
Conference Paper
Background: From a diagnosis that was considered rare historically, Autism Spectrum Disorder (ASD) has now become an increasingly mainstream condition, with significantly higher prevalence rates. While ASD is a condition which evokes strong emotional reactions in families and individuals undergoing the diagnostic process, anecdotal evidence suggests that this outcome is one actively sought by families. The apparent fluidity of the diagnostic boundary, however, has implications for our accepted understanding of the ‘normal child’ and who has a pathological disorder. Aims: The paper aims to demonstrate how families and individuals construct their understanding of ASD and what constitutes the boundary between disability and ability. Methods: Two data sets are utilised for this paper. First is a naturally occurring data set of child mental health assessments from the UK-based Child and Adolescent Mental Health Service, in the form of video recordings. Second is a series of focus groups with stakeholders about ASD and ASD services. These were audio-recorded. Conversation analysis is used to analyse both sets of data. Findings: Families utilise different strategies in the assessment data to actively convince a clinician that the child warranted a diagnosis of ASD, the desired outcome. However, the failure to endorse this diagnosis is treated as problematic and required additional time. In other words, the ‘ASD’ outcome was treated as the preferred outcome by clinicians. The assignation of such a label creates tensions for viewing the child as disabled or not, which reflects the broadness of the label and the spectrum of the condition. In this sense the families may resist the biomedical semantics of the diagnosis, which was a focus of the discussion in the stakeholder focus groups. Conclusions: Over time ASD has become a more accepted description of children’s behaviour, one which is not necessarily synonymous with disability, by some with the condition.
... In light of evidence that stigma toward mental health conditions is heightened in collectivistic cultures (Abdullah & Brown, 2011;Griffiths et al., 2006;Papadopoulos et al., 2013) and evidence that stigma toward autism is heightened among college students in Japan and Lebanon relative to the United States Someki et al., 2018), we considered the possibility that stigma toward autism might be positively associated with collectivism. However, other literature suggested that stigma toward autistic individuals may be reduced in potentially more collectivistic cultural contexts such as Morocco (Haldane & Crawford, 2010), the Navajo Nation (Kapp, 2011), and Nicaragua (Kim, 2012), and that a preference for social inequality may more closely relate to prejudice (Duckitt & Sibley, 2017;Ekehammar et al., 2004;Sibley & Duckitt, 2008). After discussing these conflicted patterns in the prior literature, the authors of this report were unable to agree upon a unified hypothesis concerning cultural values and stigma. ...
Article
Full-text available
Although stigma negatively impacts autistic people globally, the degree of stigma varies across cultures. Prior research suggests that stigma may be higher in cultures with more collectivistic orientations. This study aimed to identify cultural values and other individual differences that contribute to cross-cultural differences in autism stigma (assessed with a social distance scale) between college students in Lebanon (n = 556) and the US (n = 520). Replicating prior work, stigma was lower in women than men and in the US relative to Lebanon. Heightened autism knowledge, quality of contact with autistic people, openness to experience, and reduced acceptance of inequality predicted lower stigma. Collectivism was not associated with heightened stigma. Findings highlight the need to address structural inequalities, combat harmful misconceptions, and foster positive contact to combat stigma.
... Severe loss of hearing and intellectual disability as assessed by non-Indigenous practitioners are often not considered abnormal or a disability (Ariotti 1999; cf. Kapp 2011). Self-reported rates for diabetes are several times lower than clinically assessed rates. ...
Article
Full-text available
Cultural diversity and social inequality are often ignored or downplayed in disability services. Where they are recognized, racial and cultural differences are often essentialized, ignoring diversity within minority groups and intersectionality with other forms of oppression. This is often an issue for Indigenous Australians living with disability. This paper argues that understanding Indigenous disability in Australia requires a critical examination of the history of racism that has systematically disabled most Indigenous people across generations and continues to cause disproportionate rates of impairment. Approaches that focus on the cultural ‘otherness’ of Indigenous people and fail to address taken-for-granted normative ‘whiteness’ and institutional and discursive racism are unable to escape that history.
Technical Report
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The Sonoran UCEDD in conjunction with the Native American Research and Training Center (NARTC) at the University of Arizona performed a needs assessment of selected American Indians and Alaska Natives (AI/AN) in the spring and summer of 2011. The purpose of the project was to provide Commissioner Sharon Lewis, Administration on Intellectual and Developmental Disabilities (AIDD), with a snapshot of the AI/AN experience with DD in selected Tribal and urban American Indian communities. Specifically, the report provides information about the availability of services and support for individuals with developmental disabilities (DD) and their families, the needs of DD tribal members and their families, and tribal members' familiarity and contact with the DD Network agencies.
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This pilot ethnomethodological study examined perceptions of parents/caregivers of children diagnosed with autistic spectrum disorders concerning actions, norms, understandings, and assumptions related to adjustment to this chronic illness. The sample included 14 caregivers (75% Hispanic of various ethnic groups). Maximum variation sampling was used to compare participants on variables that were inductively derived via constant comparative methods of analysis. The following action categories emerged: "Seeking Diagnosis," "Engaging in Routines to Control behavior," "Finding Therapies (Types of Therapies)," "Finding School Accommodations," "Educating Others," "Rising to Challenges," and "Finding the Role of Spiritual and Religious Belief."
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The process of copying figures with a pencil, crayon, or similar tool is a fun activity for young children, enabling them to express their ideas and learn about the world. While copying skills typically emerge in first and second grades, some children with autism spectrum disorder (ASD) struggle to copy the whole form of figures, producing a fragmented final product. In this article, we propose an intervention protocol for children with ASD who possess a detail-focused cognitive style (weak central coherence) that restricts their skills to see and copy complete drawings. Employing these children's unique cognitive style, we propose intervention principles to develop visual searching skills. Visual searching skills allow children to see all components in a picture and to understand the relationships between all components. Once children learn how to search drawings thoroughly, they can analyze the components of a new figure and copy it more accurately.
Article
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http://www.mdpi.com/2227-7080/1/1/3 th paper Social robotics, brain machine interfaces and neuro and cognitive enhancement products are three emerging science and technology products with wide-reaching impact for disabled and non-disabled people. Acceptance of ideas and products depend on multiple parameters and many models have been developed to predict product acceptance. We investigated which frequently employed technology acceptance models (consumer theory, innovation diffusion model, theory of reasoned action, theory of planned behaviour, social cognitive theory, self-determination theory, technology of acceptance model, Unified Theory of Acceptance and Use of Technology UTAUT and UTAUT2) are employed in the social robotics, brain machine interfaces and neuro and cognitive enhancement product literature and which of the core measures used in the technology acceptance models are implicit or explicit engaged with in the literature.
Chapter
As a group intersecting two marginalized populations, Australia’s Indigenous people with disability experience greater social inequality compared to other groups in society, including Indigenous people without disability and people with disability who are not Indigenous. Human rights frameworks and social policy that are designed to address one aspect of their rights have proven inadequate in securing their composite rights as an Indigenous person and as a person with disability.
Technical Report
Full-text available
The Sonoran UCEDD in conjunction with the Native American Research and Training Center (NARTC) at the University of Arizona performed a needs assessment of selected American Indians and Alaska Natives (AI/AN) in the spring and summer of 2011. The purpose of the project was to provide Commissioner Sharon Lewis, Administration on Intellectual and Developmental Disabilities (AIDD), with a snapshot of the AI/AN experience with DD in selected Tribal and urban American Indian communities. Specifically, the report provides information about the availability of services and support for individuals with developmental disabilities (DD) and their families, the needs of DD tribal members and their families, and tribal members' familiarity and contact with the DD Network agencies.
Conference Paper
In the UK there has been a marked increase in children from minority ethnic families receiving an autism diagnosis but there continues to be a dearth in research that has explored the diversity of families’ lived experiences. The research sought to address this under-representation by using a transcultural approach to understand how families are drawing on multiple cultural influences in response to having an autistic child. Eleven parents from nine families who lived in one London borough were interviewed using a non-directive narrative approach. The families included two parents who were born in the UK, five who migrated to the UK as children and four who came to the UK as adults. All the families had a child with autism aged between four and seventeen years old, who attended either a special school or a mainstream school in the same London borough. Combining transculturalism with a narrative interview approach made it possible to pay attention to the ways in which families’ lives are transformed when they have an autistic child, how parents develop multiple identities in their interactions with professionals and family members across different social and cultural contexts and the impact this has on their sense of belonging to the community and networks of support. Analysing the interviews followed a case-based approach with themes examined within and across all cases. A thematic analysis of the families’ transcultural experiences showed that there were commonalities in their experiences of parenting children with autism as well as distinct and relevant cultural values and resources which influenced their individual responses to having an autistic child. The families wanted teachers in mainstream schools and those in their community to have more understanding and knowledge about how autism affected their lives and positive recognition of the solution-focused strategies that they were using to advocate for their autistic child’s healthcare and education. The findings from this research supported the development of a transcultural model that will be of value in developing culturally responsive pedagogical practice in autism education. The recommendations are that there is a need to further address culture and ethnicity in research on autism and special education, encouraging teachers to think about how they work with autistic children and the social and cultural realities that are an essential aspect of families’ transcultural lives.
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Growing up and becoming an active participant in society can be challenging for young people. Factors such as ethnicity, disability and gender can, separately, pose difficulties. When combined, they can develop into insurmountable obstacles. The use of music interventions and activities to overcome some of these obstacles is explored in this article, using two cases of young First Nations people diagnosed with autism, in British Columbia, Canada. Although there are similarities, the differences in severity of ASD, place of residence and school situation, to mention a few factors, make a huge difference in their daily lives. Their contrasting possibilities to be present and participate in society may have implications for their social inclusion in adulthood. Results show that both traditional and contemporary music interventions can provide foundations for inclusion and they need to be carefully designed for each individual.
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Lay abstract: We know that parents of autistic children experience poorer mental health and lower well-being than parents of non-autistic children. We also know that poorer mental health among parents of autistic children has been observed across different cultures. Most research focuses on Western cultures, so we know little about parental mental health and well-being of parents from different cultural backgrounds; yet, it is likely that cultural background contributes to how parents view their child's condition and respond to the diagnosis. Here, we compared mental health, quality of life and well-being between families raising an autistic child from Australian backgrounds to families from South-East Asian backgrounds. All children in the current study were receiving the same community-based early intervention. When compared to the general population, parents had poorer mental health overall, but there were no differences between the two groups of parents. However, parents from South-East Asian backgrounds reported higher well-being and fewer difficulties associated with their child's autism. These findings suggest that cultural background likely influences not only parent's view of, and response to, their child's autism, but also their own sense of well-being. As researchers and clinicians working with families of autistic children, we should more explicitly consider family's cultural background within our work.
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Through its hegemonic ideologies, colonialism and its constituent underpinnings of religious and racial superiority, necessitates the erasure of the cultural identity of people outside the dominant Euro-Western culture and as non-normative groups, Indigenous Peoples and autistic people disabled per colonized paradigms, experience oppression, and subjugation harmful to self-identity and mental health. This article discusses culturally responsive interventions aimed at supporting strong cultural identity formation and safeguard Indigenous and autistic people from stigmatization, misrepresentation, and erasure of identity. Promising research uses Indigenous knowledges in education and arts programming to disrupt patterns of social injustice, exclusion, and cultural genocide while promote positive identity formation, pride, and resilience for Indigenous autistics. While Indigenous and autistic people exist globally, this article reviews literature from Canada, the United States, Australia, and New Zealand.
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The topic of Autism is highly within academic literature (over 20000 articles in the database PubMed of US National Library of Medicine, National Institutes of Health and the public domain (79 Million hits in Google). Newspapers also show a great interest in autism. However despite the prevalence of autism coverage very little media analysis has been performed. We present here an analysis of the coverage of autism in the New York Times from the time the term autism first appeared (1973) to 2012. Ability expectations and preferences are one dynamic through which members of a group judge others, themselves and their lives. Ability preferences and judgments are at the root of many rules of behaviours and customs. Ableism was one lens through which we analyzed the discourse surrounding autism in the NYT. We found that readers that rely on the NYT as a primary source of information get very limited information about what autism is and what factors are associated with autism and they are heavily exposed to a medical narrative. We suggest that the negative, medical narrative adds to the problems people with autism face. Keywords: autism; perception; media; New York Times; language; ableism
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Current research examining self-determination in cultural contexts has yielded mixed findings. This qualitative interview study collected rich information from parents of four major cultures about their understanding of self-determination and their daily engagement in self-determination related activities with their children with disabilities. Various culturally-related patterns were found indicating differences between parents of mainstream culture and other cultures. Differences existed in the following areas: understanding the concept of self-determination; talking to the child about strengths and weaknesses; promoting self-efficacy; and teaching independent living, goal setting, problem solving, and decision making skills. Implications and recommendations for future research are provided.
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On the basis of self-determination theory (R. M. Ryan & E. L. Deci, 2000) and cultural descriptions drawn from H. C. Triandis (1995), the authors hypothesized that (a) individuals from different cultures internalize different cultural practices; (b) despite these differences, the relative autonomy of individuals' motivation for those practices predicts well-being in all 4 cultures examined; and (c) horizontal practices are more readily internalized than vertical practices across all samples. Five hundred fifty-nine persons from South Korea, Russia, Turkey and the United States participated. Results supported the hypothesized relations between autonomy and well-being across cultures and gender. Results also suggested greater internalization of horizontal relative to vertical practices. Discussion focuses on the distinction between autonomy and individualism and the relative fit of cultural forms with basic psychological needs.
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In this article, we examine the experiences of Navajo youth living on the contemporary Navajo reservation with the aim of conceptualizing how they position themselves between overarching discursive tensions of what it means to be Navajo and the everyday constraints of existence on the Navajo reservation. We take up three topics in particular: the categorical problems and processes of Navajo youth specifically in terms of their use of such organizing terms as tradition, the multifaceted reservation and off-reservation worlds that Navajo youth move through, and the mediating role of Navajo ritual healing in cultivating a sense of connectedness for adolescents, which in turn feeds into the broader task of negotiating a uniquely Navajo identity. This article is based on interviews with 11 adolescents and postadolescents who took part in the larger Navajo Healing Project
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This paper draws on an analysis of forty-five published autobiographical accounts of individuals with an autistic spectrum disorder (ASD) to highlight the important role of their, often intense, emotional relations to 'natural' things and places. In doing so, it offers a partial corrective to clinical and popular views of people with autism as almost entirely asocial and unconcerned with the beings and doings of others. A textual hermeneutic of the phenomenal insights reported by authors reveals instead that their personal geographies are characterized by rich, rewarding, and meaningful relationships with the wider more-than-human world, and that aspects of their lives can be undeniably, agreeably, 'social' in this broader sense. Such an analysis may offer important, albeit methodologically limited, insights into experiences of ASD while also challenging dominant understandings of 'sociality'-in the sense of 'being-with-others' - and of emotional involvement, that focus entirely on interactions between human beings. Indeed, to some extent, these emotionally charged experiences of the 'natural' world resonate with the feelings of many more neurotypical individuals.
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Native American languages, contemporary youth identity, and powerful messages from mainstream society and Native communities create complex interactions that require deconstruction for the benefit of Native-language revitalization. This study showed how Native youth negotiate mixed messages such as the necessity of Indigenous languages for cultural continuity and a belief in the superiority of English for success in American society. Interviews and reflective writing from Navajo and Pueblo youth constituted the counter-narratives that expressed the youth's concerns, values, frustrations, celebrations, and dilemmas with regard to their heritage language and identity. The youth perspectives extended across 5 thematic areas: respect, stigmatization and shame, marginalization, impact on identity, and agency and intervention. These counter-narratives demonstrate that the Indigenous language plays an important and complex role in contemporary youth identity. Yet, their Indigenous consciousness was not diminished by limited fluency in their heritage language—an important finding for inspiring a commitment to language revitalization.
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Draws a distinction between attribution of responsibility for a problem and attribution of responsibility for a solution. Four general helping models are derived. In the "moral" model, actors are held responsible for both problems and solutions and are believed to need only proper motivation. In the compensatory model, people are responsible only for solutions and are believed to need power. Individuals in the medical model are responsible for neither problems nor solutions and are thought to need treatment. In the enlightenment model, actors are responsible for problems but are unable or unwilling to provide solutions; they need discipline. It is maintained that each set of assumptions has characteristic consequences for the competence, status, and well-being of actors and that the wrong choice of model in a situation will undermine effective helping and coping. Competing models of responsibility in education, psychotherapy, law, and welfare are described, and research on attribution of responsibility is recommended as a way of addressing problems of both theoretical and social significance. (128 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
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We use a systematically integrated combination of ethnoscience ethnography and survey research to provide a description of what Navajos have been taking into account when deciding how to cope with accelerating energy extraction and other industrial development. Beginning with a decision model of the adaptation process, we validate that model with a reservationwide survey. Perceptions of the most likely outcomes from development are relatively uniform across different socioeconomic groups. Three factors appear to be important in accounting for variation in attitudes toward development: degree of integration into the external economy, degree of marginality to the Navajo kinship system, and degree of marginality to the subsistence livestock economy.
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In this article, we discuss findings of a hermeneutic phenomenological study that sought to describe the experiences of parents who have a child with autism. Qualitative interviews were conducted with parents from 16 families of children with autism residing in a western Canadian province. "Living in a world of our own" emerged as the essence of the parents' experiences. In "living in a world of our own," parents described a world of isolation. Three themes representing the essential challenging elements of the parents' experiences included vigilant parenting, sustaining the self and family, and fighting all the way. Although much is known about the fundamental importance of support to parents of children with chronic conditions and/or disabilities, findings from this study indicate that knowledge has not been adequately transferred to the care of children with autism.
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Recent literature in the field of transition studies emphasizes importance of creating self-determination supports to promote independence, autonomy, and quality of life in students with disabilities. Much of that literature, however, has not taken cultural and familial factors into consideration. A review of the Navajo family and disability literature indicates that most traditional and semi-traditional Dine ´ (the preferred term for referring to the Navajo people, a term that translates in the Native language to "The People") indicates that the component elements of self-determined behavior are relevant to and important to Dinepeople, but that the ways in which these are expressed differs from an Anglo perspective. While the Dinepeople value self-regulation and autonomy, they are operationalized more in an emphasis on the importance of interdependence and group cohesion above independence and autonomy. This examination of application of self-determination within context of the Dineculture and traditions illustrates the universality of certain aspects of self-determination while at the same time indicating critical need for educational services that reflect cultural, racial, and familial values of the student.
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Autism is a widely researched area and much emphasis has been placed in research on the differences between the autistic and non-autistic populations. Such research commonly draws on proposed deficits within people with autism in order to explain differences. This paper seeks to present an alternative understanding of differences and draws on writings of people with autism in such a discussion. The construction of 'Neurologically Typical syndrome' (NT) will be presented as an inverted construction of diagnosis, which serves to challenge the dominant position of 'NTs' and 'NT traits' over autistic traits. It will be argued that such an alternative representation of people with and without autism has important implications for our construction of and understanding of autism.
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A total of 274 preservice teacher education students were surveyed at the beginning and end of a one-semester unit on Human Development and Education which combined formal instruction with structured fieldwork experiences. The latter included interviewing community members regarding their knowledge of Down syndrome and opinions on inclusive education, and writing an associated report. At the end of semester, not only had student teachers acquired more accurate knowledge of Down syndrome, together with more positive attitudes towards the inclusive education of children with Down syndrome, but their attitudes towards disability in general had also changed, and they reported greater ease when interacting with people with disabilities. The study illustrated the value of combining information-based instruction with structured fieldwork experiences in changing attitudes towards disability and inclusion. It also demonstrated that raising awareness of one disability may lead to changes in attitudes towards disability in general.
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Resolution with the diagnosis of one's child involves coming to terms with and accepting the diagnosis and its implications. Parental resolution with the diagnosis was examined among 61 mothers and 60 fathers of 61 children with autism spectrum disorders aged 2-17 years. We investigated resolution rates and subtypes, and associations between resolution status and child characteristics (CA, gender, MA, adaptive behavior, diagnosis type, time elapsed since diagnosis) and parent characteristics (age, gender, IQ, broad autism phenotype index, special needs' impact on family). Nearly half of the parents were classified as resolved. Maternal but not paternal resolution status was associated with reported negative impact of raising a child with a disability on family life, but not with other characteristics of the child or the parent.
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Assumptions of difficulties with social interaction, or lack of interest in social interaction, are central to many definitions and conventional understandings of autism. However, many individuals with autism describe a strong craving social interaction. This article uses autobiographical accounts written by individuals who identified as autistic as a source of qualitative research data and specifically explores the ways these texts address issues of social relationships. Using narrative inquiry, the authors explored how individuals with autism described their own notions of and experiences with social interaction. This article discusses the broad themes of (a) the desire to have connections and (b) navigation through the world of people. Last, implications for the education of individuals with autism are considered.
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Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome. Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.
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Recent scientific work has established both a theoretical basis and strong empirical evidence for a causal impact of social relationships on health. Prospective studies, which control for baseline health status, consistently show increased risk of death among persons with a low quantity, and sometimes low quality, of social relationships. Experimental and quasi-experimental studies of humans and animals also suggest that social isolation is a major risk factor for mortality from widely varying causes. The mechanisms through which social relationships affect health and the factors that promote or inhibit the development and maintenance of social relationships remain to be explored.
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Despite increased emphasis on self-determination for individuals with mental retardation, only a few theoretical models have been formulated that specify measurable characteristics for the promotion and evaluation of this outcome. We propose that self-determination refers to acting as the primary causal agent in one's life and making choices and decisions regarding one's quality of life free from undue external influence or interference. Self-determined behavior is autonomous, self-regulated, based on psychological empowerment, and self-realizing. We evaluated this definition by asking participants with mental retardation to complete various instruments that measured self-determined behavior and these essential characteristics. Discriminant function analysis indicated that measures of essential characteristics predicted differences between groups based on exhibition of self-determined behavior.
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Americans now live in a time and a place in which freedom and autonomy are valued above all else and in which expanded opportunities for self-determination are regarded as a sign of the psychological well-being of individuals and the moral well-being of the culture. This article argues that freedom, autonomy, and self-determination can become excessive, and that when that happens, freedom can be experienced as a kind of tyranny. The article further argues that unduly influenced by the ideology of economics and rational-choice theory, modern American society has created an excess of freedom, with resulting increases in people's dissatisfaction with their lives and in clinical depression. One significant task for a future psychology of optimal functioning is to deemphasize individual freedom and to determine which cultural constraints are necessary for people to live meaningful and satisfying lives.
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p class="MsoNormal" style="margin: 0in 0in 10pt;"> This article examines challenges to the quality of life experienced by autistic adults. The author, who is an autistic researcher, first shares how a neurodiversity perspective offers an important alternative to the deficit model of autism. Whereas the deficit model portrays autistic people as ill, broken, and in need of fixing, the neurodiversity perspective portrays it as a form of human diversity with associated strengths and difficulties. The article’s discussion then shifts to presenting Schalock’s (2000) quality of life framework as a neurodiversity-compatible lens through which domains of quality of life can be viewed. The article analyzes in detail these core domains in relation to the lives of autistic adults. The author suggests that a collaborative approach between professionals/researchers and autistic adults is needed to develop meaningful solutions to these challenges, and he presents possibilities for collaboration. Keywords Autism, Neurodiversity, Quality of life, Autistic Adults </span
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Currently, educators lack longitudinal data measuring both the qualitative and quantitative outcomes of various educational interventions used with handicapped students. As a result, there is no reliable standard to use when designing instructional programs which meet the “criterion of ultimate functioning ” (Brown, Nietupski, & Hamre-Nietupski, 1976). The criterion of the least dangerous assumption is presented as an interim standard to use until such data are available. The criterion of the least dangerous assumption holds that in the absence of conclusive data educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to function independently as adults. The use of the criterion of the least dangerous assumption in instructional program design, parent involvement, and student evaluation of students with autism is illustrated.
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In this article, Donna Deyhle presents the results of a decade-long ethnographic study of the lives, both in and out of school, of Navajo youth in a border reservation community. She describes the racial and cultural struggle between Navajos and Anglos and the manifestation of that struggle in schools and the workplace. While utilizing these theories' central insights, but then moves beyond them. While differences in culture play a role in the divisions between Anglos and Navajos, Deyhle asserts that these differences intertwine with power relations in the larger community, and that Navajo school success and failure are best understood as part of this process of racial conflict. Navajos, subjected to discrimination in the workplace and a vocationally centered assimilationist curriculum in schools, are more academically successful when they are more secure in their traditional culture. This study demonstrates that those students who embrace this life-affirming vision both gain a solid place in their societ...
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This article presents findings of a pilot study on natural helping conducted in the southwestern region of the Diné (commonly referred to as Navajo) Nation in Arizona. The sample Included 25 Individuals Identified by community members as natural helpers. Researchers used the same procedures and Interview Instrument utilized in previous studies of large samples of European American natural helpers in the Northeast and Midwest. Overall findings support earlier results with respect to how help was initiated, problem type, and helping style. Helpers generally offered help before it was requested and gave Instrumental help with environmental problems. Diné natural helping differed from natural helping in other populations studied in the extent to which helping one's relations emerged as a central aspect of Individual and community Identity. Relationships between helpers and recipients were long-standing, as In earlier studies, but were characterized by a greater degree of closeness and a stronger sense of commonality and reciprocity. Accordingly, there was little sense of social distance between helpers and recipients. Recipients were also more likely to ask for help than recipients In earlier studies. Another difference between Diné respondents and those in earlier studies was the extent to which problems and their solutions were perceived in spiritual terms. Overall findings suggest the Importance of professional helpers recognizing community strengths, particularly Informal helping, as a vital resource in Native American communities. Fundings further suggest the advisability of collaboration between professional and natural helpers. Detailed Implications for research and practice are provided.
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Book review of Unstrange Minds: Remapping the World of Autism. By Roy Richard Grinker; New York, Basic Books, 2006, 340 pages, $26.95.
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In this story I listen closely to the ways in which two late nineteenth-century American Indian intellectuals, Sarah Winnemucca Hopkins and Charles Alexander Eastman, use the discourses about Indian-ness that circulated during that time period in order to both respond to that discourse and to reimagine what it could mean to be Indian. This use, I argue, is a critical component of rhetorics of survivance.
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This article is about a small group of Navajo youth and the messages they expressed through both break dancing and heavy metal. Their break-dancing performances spoke loudly against racial discrimination in their community and echoed the hope of achieving equity. Over their years in high school, they traded the optimistically rebellious music of break dancing for the somewhat fatalistic complaint music of heavy metal. The construction of these youth's identities is framed within a critique of the “living between two worlds” metaphor—the Indian world and the Anglo world—as a deficit model. The traditional world of their grandparents no longer exists, and, due to racism in the community, the Anglo world is not available to them. Instead, we need to look at the complex, conflictual world in which these youth live to make sense of their performances of resistance as expressed in their music choices.
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Self-determination has been identified with people with disabilities only since 1988. This article traces the history of the civil rights, disability rights, and self-advocacy movements. What began as a small federal initiative is presently a national effort in health care and other disability service systems and embraces ideas such as self-direction and consumer control. The road to self-determination has been different for three distinct populations: people with physical disabilities, people with cognitive disabilities, and people with Asperger syndrome and other autistic conditions. However, they all are striving to control their own lives and gain respect in their communities. Future self-determination efforts must further leadership skills and accentuate the positive values of having a disability.
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This study investigated 52 Navajo family caregiver perceptions about early intervention services. Family-related early intervention practices were rated by caregivers to identify their perception of typical and desired practices. Data also were collected to determine the relationships between caregiver satisfaction and three variables (a) selected family-related program practices, (b) program providers, and (c) family and child characteristics. Supplemental information was gathered from 15 early interventionists identified by the caregivers. Overall, caregivers were satisfied with services, although the perceived level of participation varied. Caregivers' perceptions of program family-centeredness had a strong positive relationship with satisfaction. Neither provider variables nor family variables had strong correlations with satisfaction. Discussion focuses on the importance of using a family-centered approach in this unique cultural context.
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In this article, students from a small, predominantly Navajo high school speak for themselves about their lives, their educational experiences, their culture, and their hopes for the future. They demonstrate clearly their desire to maintain close allegiance to their home language and culture, while finding ways to achieve success in the wider world. The article also demonstrates that how these youth see themselves is frequently different from how educators represent them. Thus, in the interface of competing allegiances, perceptions, and understandings, are clues for creating school communities built on difference rather than homogeneity.
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The concept of assimilation has experienced a rebirth in the last fifteen years of immigration research. In critiquing this current emphasis, I explore the case of New Mexico in the Southwest where ethnic and cultural differences have been a hallmark for 400 years. Using data from the Navajo reservation, I argue that focusing on ways that Navajo families deal with increased regional migration, economic integration, and intermarriage offers insights into the processes by which elements from a dominant society are incorporated in to distinctive ethnic repertoire that also preserves cultural practices and identities. These processes also characterize change for new immigrant populations. Recent studies have stressed the need to examine the shifting US milieu, the role of new gateway cities in the South and West, and the importance of replenishment in creating the conditions for maintaining cultural difference. This article goes further and underlines the importance of examining variations within families, networks, and communities as well as attention to the micro-practices for creating new cultural forms and retaining older ones.
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In this paper we explore the significance of metaphor and dominant cultural narratives in current autism discourse. We briefly explore the history of metaphor in autism discourse, and outline the contemporary struggle between the culturally dominant metaphor of autism as disease and the emergent counter‐narrative of autism within neurodiversity. We argue that metaphor serves very specific purposes in autism discourse, including (1) to create a commonsensical narrative congruence between common understandings of autism and currently dominant notions about its aetiology(ies) or causes(s), and (2) to create a commonsensical narrative congruence between common understandings of autism and currently dominant notions about appropriate responses to or interventions for autism. We argue that the bulk of the support for metaphorically framing autism within a disease model comes from within the non‐autistic (‘neurotypical’ or ‘NT’) community, whereas the bulk of the support for metaphorically framing autism within a neurodiversity model comes from within the autistic community (and is inclusive of some non‐autistic allies as well). In exploring these competing cultural narratives, we argue for the crucial import that counter‐narrative can play in the process of cultural critique and resistance to ideological hegemony.
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Cultural constructs of disabilities can vary from one culture to another and significantly affect how the individual with disabilities is perceived, accepted, and accorded citizenship rights and responsibilities. This anthropological study of Navajo individuals with disabilities investigates these cultural constructs in a non-Western society from the perspective of the Navajo community members. Factors analyzed include child-rearing practices, the Navajo concept of childhood, and Navajo notions of health and unwellness. Historical attitudes toward disabled people are also explored, as well as changing attitudes due to the influence of Western biomedical explanations and interventions.
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Three high-functioning adults With autism participated in a qualitative research study over a 9-month period. The purpose Was to investigate and describe their perceptions of their life experiences. Methods included conducting initial visits and intervieWs, conducting folloW-up intervieWs, and reading published and unpublished material Written by the participants. It Was determined that high-functioning adults With autism Want to be considered experts in the field of autism and Want to be consulted on issues related to autism. They are proud to have autism and do not desire to be a “neurotypical.” Over time, these adults have developed opinions on a Wide variety of topics related to autism. Recommendations to parents and professionals involved in Working With individuals With autism are provided.
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Social model theory has been developing in Britain since the Union of the Physically Impaired Against Segregation (UPIAS) published their Fundamental Principles of Disability (1976), followed shortly afterwards by Finkelstein's seminal exposition of the oppression that disabled people face (1980). Since then, various competing positions have been elaborated from this original starting point. Through a review of the literature, this paper outlines the course of those developments to date, in order to show the full range and potential of social model theory. In recording some of the commentaries on each of the various theoretical strands which have emerged, it also highlights some areas in which further theorisation may be desirable in order to make more explicit the links between social model theory and disability movement practice.
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Autonomy and agency are used extensively and often interchangeably; there is a debate regarding their intersections with relatedness and separateness. This scholarship occurs within mainly a Euro-American cultural context that provides an ideological background of individualism, shedding light on psychological thinking. The article attempts to provide a broad overview of the issues involved. Two distinct dimensions, agency and interpersonal distance, are seen to underlie the self constructs involving autonomy and relatedness that are developed in different spheres of psychological inquiry. Autonomy and relatedness are viewed as basic human needs, and though apparently conflicting, are proposed to be compatible. Problems of conceptualization and operationalization are noted that have prevented the recognition of this compatibility. A model is put forward that involves a fourfold combination of the two dimensions, leading to different types of self and the societal and familial contexts in which they develop. Recent research provides credibility to the model proposed.
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Much has been written by queer theorists about the personal and political ramifications of being out of the closet, and connections with experiences of disclosure for those with 'hidden' health conditions have been made by researchers studying critical geographies of disabilities and chronic illness. To date, however, the impact of such issues for those on the autism spectrum (AS) has received comparatively little attention. Popular re-presentations of AS suggest disclosure is irrelevant for those assumed so obviously different and unlikely to pass as 'normal.' However, AS authors reveal a broad spectrum of experience indicating that concealment and disclosure are complex and selective strategies of information and identity management. Applying discourse analysis to AS autobiographies and personal narratives, this paper explores four sense-making discourse clusters, or repertoires, that emerge from the texts under study: a 'keeping safe' repertoire, which addresses protective strategies in disclosure and coming out; a 'qualified deception' repertoire, which relates to the complexities of non-disclosure; a 'like/as resistance' repertoire, which captures the tendency of AS authors to position their individual and collective experiences of coming out on the spectrum as analogous to the process of coming out for other marginalized groups, most notably gay and Deaf communities; and an 'education' repertoire, which contributes to the project of building a community to come out to. Each of these repertoires is situated within the broader literature in social and cultural geography and critical disability studies.
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V. S. Helgeson (1994) offered a promising model to explain sex differences in well-being. Three meta-analyses of gender research relevant to this model are provided along with an empirical investigation of the relations between agency and communion, unmitigated agency and unmitigated communion, and self- and peer reports of well-being and distress in a sample of 201 college students. The results extended Helgeson's model by showing that agency and communion can be assessed at the level of interests and role behaviors and that the association of agentic traits with well-being may be inflated by self-reports. Results also point to problems in distinguishing trait measures of agency from unmitigated communion and communion from unmitigated agency. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
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The current study assessed associations among theoretically driven measures of ethnic identity and psychosocial adjustment among 137 Navajo adolescents. For both sexes, measures of students' sense of affirmation and belonging to their ethnic heritage emerged as a strong predictor of positive psychosocial functioning. Less-consistent patterns of association emerged between other measures of ethnic identity and psychosocial adjustment. Students with achieved ethnic identity status, characterized by high levels of exploration of their ethnic heritage and high levels of affirmation or commitment to their Navajo culture, reported the most positive functioning on several measures. Interesting interactions with biological sex suggested that ethnic identity may function differently for male and female Navajo adolescents. Implications of results for educators, parents, and policy makers are discussed.
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Abstract For many decades, autism has been viewed as a biomedical condition, highlighting deficits in social interaction and communication. Based on ethnographic data from a study of adults with High Functioning Autism, this article explores the emergence of the autistic community, a group composed of people with autism, who are challenging these notions. First, I suggest that three historical trends can be linked to the emergence of this community: the widening of the autism spectrum, the strengthening of the self-advocacy movement, and the explosion of technology. Drawing from ethnographic data, I describe the community, including its discourse, occupations or activities, and lexicon. Although the autistic community has grown over the past decade, it has also faced resistance from both inside and outside the group. I investigate this tension, arising in a debate regarding whether autism is a condition in need of a cure or a way of life and suggest that the autistic community has the power to transform notions of autism. Implications of this research for psychological anthropology's notions of sociality are introduced. [autism, community, social model of disability, occupation]
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There is widespread dissatisfaction with the existing diagnostic system articulated in the Diagnostic and Statistical Manual of Mental Disorders (DSM). The current DSM system is atheoretical, cumbersome to use, and plagued by the problems of comorbidity and heterogeneity. We explore two possible alternative approaches: (a) reorganizing the diagnostic classes and (b) the implementation of fully dimensional schemes. We then discuss the possibility that DSM-V will be a hybrid system, with Axis I remaining categorical and Axis II becoming dimensional. We conclude with a discussion of the merits—as well as the disadvantages—of creating two different taxonomic systems, one designed for psychopathology researchers and the other for practicing clinicians.
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In this article, we elucidate how the Navajo synthetic principle Saah Naagháí Bik'eh Hózho (SNBH) is understood, demonstrated, and elaborated in three different Navajo healing traditions. We conducted interviews with Navajo healers and their patients affiliated with Traditional Navajo religion, the Native American Church, and Pentecostal Christianity. Their narratives provide access to cultural themes of identity and healing that invoke elements of SNBH. SNBH specifies that the conditions for health and well-being are harmony within and connection to the physical/spiritual world. Specifically, each religious healing tradition encourages affective engagement, proper family relations, an understanding of one's cultural and spiritual histories, and the use of kinship terms to establish affective bonds with one's family and with the spiritual world. People's relationships within this common behavioral environment are integral to their self-orientations, to their identities as Navajos, and to the therapeutic process. The disruption and restoration of these relationships constitute an important affective dimension in Navajo distress and healing. [Navajos, identity, religion, healing, health]
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Autism spectrum disorders (ASDs), particularly the high incidence conditions of autism, PDD NOS, and Asperger's Syndrome, have become increasingly popular topics of study in the mental health field. Traditionally, the focus has been on young children and early recognition and diagnosis. However, given that these conditions are life long in nature, continued assessment in not only advisable but essential. This review covers diagnostic issues as they pertain to adults with high incidence ASD. The current state of nosology and diagnosis in adults with ASD is reviewed. A discussion of pragmatic diagnostic issues and future research needs are covered.
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The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research.
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American Indian Alaska Native people of the United States face challenges in attaining physical, mental, spiritual, and environmental health. This article presents a concept analysis of Diné Hózhó, a complex and misunderstood wellness concept the Diné (Navajo) strive to attain. Findings from a literature review are presented to explore anthropological definitions and uses of the concept Hózhó. The method of concept analysis of Walker and Avant is utilized, model cases are presented. Recommendations for application in nursing practice are presented.
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In contemporary Navajo society, traditional Navajo ceremonies, Native American Church prayer meetings, and Navajo Christian faith healing are all highly sought-after resources in the everyday pursuit of health and well-being. What is the nature of affliction among patients who turn to such forms of religious healing? Are these patients typically afflicted with psychiatric disorder? In this article we discuss 84 Navajo patients who participated in the Navajo Healing Project during a period in which they consulted one of these forms of healing. We present diagnostic results obtained from the Structured Clinical Interview for DSMIV (SCID) administered to these patients. We then present an ethnographically augmented analysis comparing the research diagnosis obtained via the SCID with a clinical diagnosis, with the diagnosis given by religious healers, and with the understanding of their own distress on the part of patients. These analyses demonstrate how a cultural approach contributes to the basic science and clinical understandings of affliction as well as to discussion of the advantages and limitations of DSM categories as descriptors of distress and disorder.