‘Are you by chance on the spectrum?’ Adolescents with autism spectrum disorder making sense of their diagnoses

Jones, Jennifer L.; Gallus, Kami L.; Viering, Kacey L.; Oseland, Lauren M.

doi:10.1080/09687599.2015.1108902

Cited by 34 publications

(61 citation statements)

References 28 publications

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“…Some autistic people seek out factual knowledge about autism while others believe that they can only be experts in their own particular form of autism (e.g., Jones et al, 2013). Autistic people have been reported to gain greater understanding of autism, themselves, and how to effectively educate others with age (Jones et al, 2015). The current findings suggest that autism trainings for autistic youth would benefit from inclusion of knowledgeable autistic adults as program mentors.…”

Section: Resultsmentioning

confidence: 99%

“…This research, typically conducted with non-autistic college students, has found that greater knowledge of autism and high-quality personal connections with autism coincide with lower stigma toward autism (Nevill and White, 2011; Gardiner and Iarocci, 2014; Gillespie-Lynch et al, 2015; White et al, 2016). A much smaller but growing body of research has examined how autistic people think about autism, including their evaluations of how it is currently represented and researched (e.g., Kapp et al, 2013; Pellicano et al, 2014a,b; Jones et al, 2015; Kenny et al, 2016; Fletcher-Watson et al, 2017). The current study is the first to compare the degree to which autistic and non-autistic people agree with extant scientific knowledge about autism, how they define autism, and the degree to which they endorse stigmatizing conceptions of autism.…”

Section: Introductionmentioning

confidence: 99%

“…Autistic people describe unique insights about autism derived from the lived experience of being autistic (Jones et al, 2013, 2015; Huws and Jones, 2015). They report that non-autistic people often do not understand autistic traits such as repetitive body movements, which autistic people say reflect sensory atypicalities (Davidson, 2010; Donnellan et al, 2012) and self-regulation strategies (Yergeau, 2016).…”

Section: Introductionmentioning

confidence: 99%

“…Autistic people commonly report feeling relieved when receiving an autism diagnosis in adulthood (Punshon et al, 2009; Jones et al, 2014) and better understood by other autistic people (Sinclair, 2010; Rosqvist, 2012b; Jones et al, 2013). Similarly, interviews with 10 autistic adolescents revealed that most did not feel that autism was a disability (Jones et al, 2015). Although they recognized challenges associated with autism, such as stigma, they valued the ways that autism made them unique.…”

Section: Introductionmentioning

confidence: 99%

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Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

et al. 2017

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Autistic and non-autistic adults’ agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

et al. 2017

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“…Additional research points out the internal and external challenges adolescents face when being diagnosed as "on the spectrum" or as "high functioning-autistic" instead of Asperger's (Jones, Gallus, Viering & Oseland, 2015;Ohan & Corrigan, 2015). Such seemingly subtle differences are anything but as a person searches for a sense of self and attempts to navigate their way through a harsh, judgmental and unforgiving world.…”

Section: Student's Self-perception Is Heavily Influenced and Reinforcmentioning

confidence: 99%

The impact of labels on relationships and identity for students and teachers in our schools

Billings¹

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This study sought to explore and better understand the importance and impact of labels in our secondary schools and society for students and educators at a small Northeast high school and how they in turn view themselves and others as a result of their interactions and experiences with labeling. What made this study important and different from previous studies was that no one particular label was investigated and that multiple labels were examined simultaneously. The twelve individuals involved in the study were a mix of staff and students from a variety of backgrounds who had both overlapping and unique experiences with labels and labeling. An interpretive phenomenological analysis (IPA) served as the methodology to better understand the intricacies and entanglements that labels have caused for the participants during their time in high school; both personally and professionally. The firsthand narratives of the participants provided detailed accounts for inductive analysis at the school under investigation. The study revealed that people's experiences with labels, while individual and inimitable, shared some commonalities in terms of impact. The four themes of normalization, liminality of labels, identity confusion and feelings of conflict were present across all of the conducted interviews to varying extents. Specifically, although people were familiar with the use of labels and labeling in schools they were far from comfortable with it. This discomfiture, if not vexation, was further confounded by the fact that the meanings and appropriateness of labels are constantly changing and, as such, ultimately contribute to confusion during the development of identity during adolescence and conflict that shapes their perceptions well into adulthood as well.

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A systematic review on autistic people's experiences of stigma and coping strategies

Han¹,

Scior²,

Avramides³

et al. 2021

Autism Research

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Autism can be understood as a concealable stigmatised identity. This is the first systematic review to synthesise the literature on autistic people's experiences of stigma and coping strategies. 2877 studies were screened and 27 were included in this review. The reviewed literature demonstrates that autistic individuals are acutely aware of being stereotyped, judged, and discriminated by others. Autistic people also show signs of internalising stigma, rendering them more vulnerable to low self-worth and poorer mental health. To manage the impact of stigma, the included studies suggest that autistic individuals may use these strategies: concealment and camouflaging, selective disclosure and self-advocacy, as well as positive reframing and reconstructing identity. However, the evidence is limited and mixed in terms of how helpful and effective these strategies are. Future studies should include autistic populations with a wider range of intellectual abilities and explore interventions that can support autistic people in managing stigma to supplement interventions that seek to reduce stigma towards autistic people. The power of language in perpetuating and challenging stigma also has important implications for research and practice, underscoring the need for researchers and practitioners to reflect carefully on the messages they are communicating about autism. Lay summaryThis review has found that autistic people often experience stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic people also have negative beliefs about themselves, which may affect their self-worth and mental health.While research suggests that autistic people use a range of strategies to manage stigma, the evidence is limited and mixed in terms of how helpful these strategies are.

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‘Are you by chance on the spectrum?’ Adolescents with autism spectrum disorder making sense of their diagnoses

Cited by 34 publications

References 28 publications

Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

The impact of labels on relationships and identity for students and teachers in our schools

A systematic review on autistic people's experiences of stigma and coping strategies

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