Sociocultural context and autistics’ quality of life: A comparison between Québec and France

Caron, Vicky; Jeanneret, Nuria; Giroux, Mathieu; Guerrero, Lucila; Ouimet, Mélanie; d’Arc, Baudouin Forgeot; Soulières, Isabelle; Courcy, Isabelle

doi:10.1177/13623613211035229

Cited by 14 publications

(9 citation statements)

References 56 publications

(100 reference statements)

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“…Grappling with a disconnect between perceptions of how they view their autistic identity and societal misconceptions is found across the autistic life span. A recent study on the quality of life of autistic adults showed that the most important predictor of quality of life in this population was the experience of social stigmatization—reportedly even more impactful than autistic traits, employment status, or biological sex (Caron et al, 2021). Hence, shifting narratives that promote the stigmatization of autistic individuals (Den Houting et al, 2021), while simultaneous fostering supportive communities that embrace the multitude of autistic identities, are imperative for the well-being of autistic youth and adults.…”

Section: Autistic Identitiesmentioning

confidence: 99%

Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth

Tesfaye

Courchesne

Mirenda

et al. 2022

Autism

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The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how these insights shared by autistic youth can facilitate active involvement in their communities, promote well-being, and promote optimal transition into adulthood. Autism Voices demonstrates that partnering with multiple stakeholders and the use of inclusive methodologies are pivotal steps toward capturing the voices of all autistic youth. Lay abstract Currently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11–18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.

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Section: Autistic Identitiesmentioning

confidence: 99%

Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth

Tesfaye

Courchesne

Mirenda

et al. 2022

Autism

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“…134 The lower social standing of stigmatised minority groups is believed to lead to exposure to more stressful life events, alongside fewer resources to manage these events. 3 Autistic people have reported a wide range of stressors common to minority groups, including victimisation, violence, discrimination, rejection and felt stigma 3,35,135 , which predicted heightened psychological distress, reduced wellbeing 3 and reduced quality of life. 135 Similarly, only 7% of autistic adults felt accepted as an autistic person within society, with feelings of acceptance protecting against depression.…”

Section: Moderating Factorsmentioning

confidence: 99%

“…3 Autistic people have reported a wide range of stressors common to minority groups, including victimisation, violence, discrimination, rejection and felt stigma 3,35,135 , which predicted heightened psychological distress, reduced wellbeing 3 and reduced quality of life. 135 Similarly, only 7% of autistic adults felt accepted as an autistic person within society, with feelings of acceptance protecting against depression. 136 These findings are particularly relevant given the high prevalence of co-occurring mental health conditions in autistic people.…”

Section: Moderating Factorsmentioning

confidence: 99%

Understanding Stigma in Autism: A Narrative Review and Theoretical Model

Turnock

Langley

Jones

2022

Autism in Adulthood

130

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The experience of stigma by autistic people is relatively understudied, despite contributing to a range of poor outcomes and having an overarching impact on wellbeing. The current review of the literature synthesises research to determine what is currently known and presents a theoretical model of autism stigma. Autism stigma is primarily influenced by public and professional understanding of autism in combination with interpretation of visible autistic traits. Moderating factors include the quality and quantity of contact with autistic people, cultural factors, sex and gender, individual differences, and diagnostic disclosure. Stigma can reduce wellbeing as well as increase the presence of camouflaging behaviours, which mask autistic traits. Caregivers of autistic people can experience stigma by association, i.e. affiliate stigma, which can impact their own wellbeing. A variety of interventions and approaches to reduce stigma are discussed, including 'autism friendly' spaces, positive media representation, educational and psychosocial training for the public and professionals, as well as cultural and systemic shifts that foster inclusivity and recognise neurodiversity.

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“…However, our data showed no correlation between the time since diagnosis and attitudes towards autism. Fifth, cultural setting may play a role because attitudes towards autism, the quality of life of autistic people and therapeutic approaches may vary by country (Caron et al, 2021). This study was conducted in Poland.…”

Section: Discussionmentioning

confidence: 99%

The spectrum of attitudes towards the spectrum of autism and its relationship to psychological distress in mothers of children with autism

Ferenc

Byrka

Król

2022

Autism

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Attitude of mothers towards their children’s autism may play a role in mothers’ psychological well-being. We investigated the predictive value of how mothers understand autism (as a neurodivergence or a developmental disorder) on their psychological distress. A group of 371 mothers of children on the autism spectrum participated in this study. We found that understanding autism as a neurodivergence was related to lower psychological distress in mothers, even after controlling for the level of autism symptoms. However, when controlling for caregiver burden, their attitude towards autism was no longer significant in explaining their psychological distress. These findings suggest that the way mothers understand autism may be important for their psychological adjustment. However, it also suggests that mothers of children on the autism spectrum may adopt different attitudes towards autism, depending on their child’s level of autism symptoms and the caregiver burden. Lay abstract Mothers of children on the autism spectrum experience high levels of emotional distress. Mothers cope with stress by having their own thoughts and opinions about their children. In this study, we tested whether the way mothers perceive autism may contribute to the level of distress they feel. Some mothers see autism as a developmental disorder that needs to be cured, but some see autism as a type of mind that needs to be accepted. Our findings showed that mothers who see autism more as a type of mind are generally less stressed. But we also showed that it matters how severe are the child’s symptoms, and how heavy was the perceived burden of caring for the child. These results imply that it is worth working on attitudes towards autism to help mothers cope better. But at the same time, we argue that mothers should not be judged for their perceptions of autism, as there is a huge spectrum of a child’s characteristics and family’s life circumstances.

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Sociocultural context and autistics’ quality of life: A comparison between Québec and France

Cited by 14 publications

References 56 publications

Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth

Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth

Understanding Stigma in Autism: A Narrative Review and Theoretical Model

The spectrum of attitudes towards the spectrum of autism and its relationship to psychological distress in mothers of children with autism

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