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Book part
Publication date: 9 November 2020

Helen Rottier and Morton Ann Gernsbacher

Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children…

Abstract

Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. However, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advocacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence.

Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars.

Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and non-autistic parent advocates and offer three principles for building future alliances to bridge the divide between autistic adults and non-autistic parents.

Implications: The chapter ends with optimism that US national priorities can bridge previous gulfs, creating space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people and their families and communities.

Details

Disability Alliances and Allies
Type: Book
ISBN: 978-1-83909-322-7

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Article
Publication date: 15 March 2010

Jan Blacher, Bonnie Kraemer and Erica Howell

The differential impact of young adult diagnosis on families during the period of transition from school to adult life was examined. Participants were parents of 246 young…

Abstract

The differential impact of young adult diagnosis on families during the period of transition from school to adult life was examined. Participants were parents of 246 young adults with severe learning disability aged 18‐26. Young adults were classified into four diagnostic groups: autism (N = 30), Down's syndrome (N = 68), cerebral palsy (N = 95) and an undifferentiated learning disability group (N = 53). Research questions pertained to parent expectations about their young adults' transition to living and working environments post high school. Parental satisfaction and worries were also assessed. The results indicated more community expectations of work for young adults with Down's syndrome, and more restrictive expectations for young adults with autism, including more expectations that young adults with autism would move out of the family home into a residential environment. Parents of young adults with autism also worried significantly more about various aspects of transition than other parent groups.

Details

Advances in Mental Health and Learning Disabilities, vol. 4 no. 1
Type: Research Article
ISSN: 1753-0180

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Article
Publication date: 29 April 2021

Essam Mansour

The purpose of this study is to investigate the information-seeking behavior of Egyptian parents of autistic children.

Abstract

Purpose

The purpose of this study is to investigate the information-seeking behavior of Egyptian parents of autistic children.

Design/methodology/approach

The study sample consists of 61 parents across Egypt, divided into six focus groups, as equal as possible, to represent Northern, Middle and Southern Egypt.

Findings

Dmographically, of the 61 parents, 32 (52.5%) were fathers, and 29 (47.5%) were mothers. A large number of parents' ages ranged from 31 to 45 years old. The highest percentage of them was holding a BA, followed by a high school/diploma, and the highest percentage was found to be married. The parents of autistic children followed many methods and channels to obtain supportive information related to their children's disease. They used many types of information, which varied between formal and informal sources. While just over a quarter of Egyptian parents prefer to use formal sources (books, newspapers, magazines, health publications, pamphlets, as well as specialized libraries), more than three-quarters of them used informal sources, such as mobile/smartphones, the Web, social media and social networking sites. The information related to the search for institutions supporting autistic people came in the first place, then that information related to searching for specialized centers in treating autistic children, then information related to rehabilitation, integration and psychological support centers for these children and then information related to the search for financial aid provided by charitable or even government agencies. Some parents were found to have limited awareness of their children's treatment mechanism, as some of them do not consider the need to treat their children in a systematic, continuous, and systematic manner. Similarly, the lack of basic services and shortage of government centers specializing in the treatment of these children. Parents also emphasized the lack of government support, as well as the lack of curative research centers. Some also pointed out that there was a shortage of workshops for the rehabilitation of their children and themselves as well.

Originality/value

This research is considered to be the first research of its kind at the local and Arab levels, which is also one of the few studies at the regional level that is interested in this community of information seekers. The findings of this research can raise awareness about the information behavior of Egyptian parents of autistic children among those who are interested in the role of the information and its use by specific groups of the information society, as well as decision makers.

Peer review

The peer review history for this article is available at: https://publons.com/publon/10.1108/OIR-11-2020-0494

Details

Online Information Review, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 1468-4527

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Article
Publication date: 6 February 2017

Susy Ridout

The purpose of this paper is to recognise communication as a central challenge between autistic and non-autistic individuals as the autistic voice is not silent, but lacks…

Abstract

Purpose

The purpose of this paper is to recognise communication as a central challenge between autistic and non-autistic individuals as the autistic voice is not silent, but lacks involvement at any level other than that of the observed participant (Milton and Bracher, 2013; NAS and Ask Autism, 2014; Parsons et al., 2009). The main research question, therefore, explores data to understand how some autistic individuals conceptualise their experiences.

Design/methodology/approach

The research design, informed by autistic people, used a flexible methodology to accommodate their communication preferences. Methods contextualised autistic narratives regarding support requirements and service provision and located power within these, acknowledging autistic individuals as the expert “insider”. This is critical in tackling access to services and social barriers to inclusion impacting negatively on well-being. Visual and written data were gathered using collage and narrative diary methods, and presented and analysed as three individual case studies (anonymised as Michael, Sophie and Peter) and as a meta-analysis providing a broad picture of themes.

Findings

Findings showed similarities and differences in a number of key areas, so highlighting the importance of the smaller narratives within the broad picture of autism.

Originality/value

This study’s key contribution to autism research is that it blends IPA, narrative analysis and discourse analysis with distinct sites of analysis (narrative process, images of autism, audiencing, turning points and discourse). Furthermore, the flexible methodology employed facilitates inclusion of autistic voices by embracing their diverse communication preferences.

Details

Qualitative Research Journal, vol. 17 no. 1
Type: Research Article
ISSN: 1443-9883

Keywords

Content available
Article
Publication date: 24 July 2020

Anu Helkkula, Alexander John Buoye, Hyeyoon Choi, Min Kyung Lee, Stephanie Q. Liu and Timothy Lee Keiningham

The purpose of this investigation is to gain insight into parents' perceptions of benefits vs burdens (value) of educational and healthcare service received for their…

Abstract

Purpose

The purpose of this investigation is to gain insight into parents' perceptions of benefits vs burdens (value) of educational and healthcare service received for their child with ASD. Parents are the main integrators of long-term educational and healthcare service for their child with ASD.

Design/methodology/approach

Design/methodology/approach included (1) a sentiment analysis of discussion forum posts from an autism message board using a rule-based sentiment analysis tool that is specifically attuned to sentiments expressed in social media and (2) a qualitative content analysis of one-on-one interviews with parents of children diagnosed with ASD, complemented with interviews with experienced educators and clinicians.

Findings

Findings reveal the link between customized service integration and long-term benefits. Both parents and service providers emphasize the need to integrate healthcare and educational service to create holistic long-term care for a child with ASD. Parents highlight the benefits of varied services, but availability or cost are burdens if the service is not publicly provided, or covered by insurance. Service providers' lack of experience with ASD and people's ignorance of the challenges of ASD are burdens.

Practical implications

Ensuring health outcomes for a child with ASD requires an integrated service system and long-term, customer-centric service process because the scope of service covers the child's entire childhood. Customized educational and healthcare service must be allocated and budgeted early in order to reach the goal of a satisfactory service output for each child.

Originality/value

This is the first service research to focus on parents' challenges with obtaining services for their child with ASD. This paper provides service researchers and managers insight into parents' perceptions of educational and healthcare service value (i.e. benefits vs. burdens) received for their child with ASD. These insights into customer-centric perceptions of value may be useful to research and may help service providers to innovate and provide integrated service directly to parents, or indirectly to service providers, who serve children with ASD.

Details

Journal of Service Management, vol. 31 no. 5
Type: Research Article
ISSN: 1757-5818

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Article
Publication date: 11 March 2021

Bethany Driver and Verity Chester

Autistic women and girls have received comparatively less attention within clinical practice and research. Research suggests women tend to be diagnosed later than men, and…

Abstract

Purpose

Autistic women and girls have received comparatively less attention within clinical practice and research. Research suggests women tend to be diagnosed later than men, and are more likely to experience misdiagnosis.

Design/methodology/approach

This paper aims to report a narrative literature review that examines research on the presentation, recognition, and diagnosis of autistic women and girls.

Findings

Findings suggest that autistic females present differently to males and highlight low recognition of the female presentation of autism among the general public, in social spheres, educational, clinical and forensic settings. This lack of recognition appears to affect the likelihood of females being referred for diagnosis, the reliability of diagnostic assessments and subsequent access to support.

Originality/value

Recommendations for clinical practice focus on initiatives to increase awareness of the female presentation of autism, improving the diagnostic process for females, increasing female representation within autism training and for future research to support these goals.

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Article
Publication date: 26 March 2019

Marion Hersh and Sharon Elley

The purpose of this paper is to present new empirical data on the experiences of 120 teachers and professionals working with autistic children and young people across…

Abstract

Purpose

The purpose of this paper is to present new empirical data on the experiences of 120 teachers and professionals working with autistic children and young people across different settings in Poland where autism research on inclusive education is scarce. It explores the relationship of inclusive education to the social and neurodiversity models of disability. It makes evidence-based recommendations for good practice and modelling and evaluating future education and inclusion practices.

Design/methodology/approach

It uses a survey approach involving a combination of qualitative and quantitative data collection and embeds practical findings in theory, including the relationship of inclusive education to the social and neurodiversity models of disability.

Findings

The findings include the barriers teachers and related professionals experience in facilitating inclusive teaching and learning and how the following would be useful to autistic students: opportunities to exercise responsibilities and take leadership roles; social as well as educational inclusion; provision of a safe environment; regular funded autism training in work time; and appropriate use of additional classroom teachers.

Research limitations/implications

A survey-based approach has limitations.

Practical implications

Opportunities to exercise responsibilities and take leadership roles; social as well as educational inclusion; provision of a safe environment; regular funded autism training in work time; and appropriate use of additional classroom teachers.

Social implications

This study can be useful in the development of social skills and communication, social and educational inclusion.

Originality/value

Polish teachers’ attitudes, experiences and support needs, including some previously overlooked issues, are related to the broader international context beyond Poland. Analysis of the findings is used to derive evidence-based recommendations for good practice and modelling, and evaluating future education and inclusion practices.

Details

Advances in Autism, vol. 5 no. 2
Type: Research Article
ISSN: 2056-3868

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Article
Publication date: 11 May 2012

Ereny Gobrial and Raghu Raghavan

Children and young people with co‐morbid intellectual disabilities and autism are more prone to experience mental health problems compared to people with intellectual…

Abstract

Purpose

Children and young people with co‐morbid intellectual disabilities and autism are more prone to experience mental health problems compared to people with intellectual disabilities but without autism. Children and young people with intellectual disabilities and autism may experience symptoms of anxiety at a greater level than the general population; however, this is not supported with research evidence in relation to the prevalence of anxiety in people with intellectual disabilities and autism. The aim of this study is to identify the prevalence of anxiety disorders in children and young people with intellectual disabilities and autism.

Design/methodology/approach

In total, 150 children and young people (age range of 5‐18 years) from a metropolitan district in the North of England were screened for anxiety using the Reiss Scales for Children's Dual Diagnosis and the Glasgow Anxiety Scale.

Findings

The results indicate that the prevalence of anxiety was 32.6 per cent for children and young people with intellectual disabilities and autism on the Glasgow Anxiety Scale. One of the important questions that arise from this study is the risk factors for the high prevalence of anxiety in children and adolescents with autism.

Originality/value

The findings highlight the prevalence of anxiety in children and young people with co‐morbid intellectual disabilities and autism. This has implications for assessment of anxiety disorders for children and young people with intellectual disabilities.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 6 no. 3
Type: Research Article
ISSN: 2044-1282

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Book part
Publication date: 24 March 2015

Abstract

Details

The Broad Autism Phenotype
Type: Book
ISBN: 978-1-78441-657-7

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Article
Publication date: 17 August 2021

Sue Mesa and Lorna G. Hamilton

A key development in early adolescence is the active construction of individual identity; for autistic young people, integrating the idea of “being autistic” forms part of…

Abstract

Purpose

A key development in early adolescence is the active construction of individual identity; for autistic young people, integrating the idea of “being autistic” forms part of this process. The purpose of this paper is to explore identity development from a contextualist perspective, foregrounding young people’s experiences within mainstream educational settings.

Design/methodology/approach

A longitudinal, qualitative methodology was used: semi-structured interviews were conducted annually with 14 autistic young people, their parents and teachers between school years 6 and 9.

Findings

Young people felt different from their neurotypical peers and their acceptance of their diagnosis changed over time as they managed their developing personal and public identities. In pursuit of being treated “normally,” many camouflaged their differences at school, which sometimes involved opting out of school-based support. Adults described their own understandings of autism and discussed the responses of others in the school environment to autistic differences.

Originality/value

The influence of sociocultural discourses of autism on young people’s identity development is discussed and implications for both school based and post-diagnostic support for young people and their families explored.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

Keywords

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