Autism in Adulthood – 4-1 – March 2022
1. Matthews R. The Night I Lost My Freedom, and Got It Back Again. Autism in Adulthood;2022 (2022/03/01);4(1):1-2.
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2. Rifai OM, Fletcher-Watson S, Jiménez-Sánchez L, Crompton CJ. Investigating Markers of Rapport in Autistic and Nonautistic Interactions. Autism in Adulthood;2021 (2022/03/01);4(1):3-11.
Background: Autism is considered to entail a social impairment whereby autistic people experience difficulty interpreting others’ mental states. However, recent research has shown that nonautistic people also have difficulty understanding the mental states of autistic people. This mismatch of understanding may explain lower rapport in interactions between autistic and nonautistic people. As mental states can be expressed externally through socially normed signals, it is important to investigate the role of such signals in autistic, nonautistic, and mixed interactions. This study explores variability in two social signals between autistic, nonautistic, and mixed interactions, and how their use may affect rapport within interactions. Methods: Videos from a previous study of autistic, nonautistic, and mixed pair interactions in a diffusion chain context in which participants were aware of others’ diagnostic status were video coded for mutual gaze and backchanneling as candidate indicators of interactional rapport. Results: Although use of mutual gaze and backchanneling was lower in mixed pairs than in nonautistic pairs, corresponding to lower ratings of interactional rapport, less backchanneling in autistic pairs of both nonverbal and verbal subtypes corresponded to higher ratings of rapport. Conclusions: We observed differences in the use of candidate rapport markers between autistic, mixed, and nonautistic interactions, which did not map onto patterns of rapport scores, suggesting differences in reliance on these cues between autistic and nonautistic people. These results suggest that visible markers of rapport may vary by neurotype or pairing and give clues to inform future investigations of autistic interaction.
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3. Baczewski LM, Pizzano M, Kasari C, Sturm A. Adjustment Across the First College Year: A Matched Comparison of Autistic, Attention-Deficit/Hyperactivity Disorder, and Neurotypical Students. Autism in Adulthood;2021 (2022/03/01);4(1):12-21.
Background: Although the number of autistic students attending higher education has grown substantially in recent decades, little is known about factors that support their retention and persistence in college. First-year experiences and adaptability to the college environment greatly impact students’ decisions to remain enrolled. Despite the importance of first-year adjustment to persistence and retention, few studies have examined the adjustment experiences of first-year autistic students compared to those of matched nonautistic students. Methods: This study used national survey data to compare the first-year college adjustment experiences of 222 freshmen, including 74 self-identified autistic students, 74 students with attention-deficit/hyperactivity disorder (ADHD), and 74 students without diagnoses (referred to as neurotypical; NT), matched on mental health and demographic characteristics. Students were compared on measures of academic, social, emotional, and institutional adjustment at the end of freshman year. Separate general linear models were used to investigate predictors of positive self-reported first-year adjustment. Results: Autistic students reported significantly lower levels of social self-confidence than their NT and ADHD peers at the end of freshman year. On all other adjustment domains, students in the autism, ADHD, and NT groups did not significantly differ. Autistic students were not significantly different from their ADHD and NT peers in terms of satisfaction with their college experience or sense of belonging to their institution. Social factors, including social self-confidence and ease of making friends, emerged as important contributors to positive first-year adjustment outcomes across all groups. Conclusions: When controlling for demographic factors and mental health characteristics entering college, autistic students do not significantly differ from their NT and ADHD peers on several domains of college adjustment. Future studies should further investigate the impact of mental health and student characteristics on college trajectories and outcomes for autistic students.
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4. Cope R, Remington A. The Strengths and Abilities of Autistic People in the Workplace. Autism in Adulthood;2021 (2022/03/01);4(1):22-31.
Introduction: At present, very few autistic people are employed, even though many want to be. It is important that their strengths are identified and valued to help them to find jobs that they enjoy, and that make good use of their skills. The aim of this study was to investigate what strengths autistic people have in the workplace, self-reported by autistic people themselves. Methods: In this study, autistic participants (n?=?66) completed an online questionnaire that asked their views about employment-related strengths that they experienced. We analyzed these data using thematic analysis to identify commonalities across participants’ experiences, and areas where they felt that they could perform better than their nonautistic colleagues. Results: The main strengths identified from these data revealed cognitive advantages such as superior creativity, focus, and memory; increased efficiency and personal qualities such as honesty and dedication; and the ability to offer a unique autism-specific perspective. Conclusions: Overall, this study suggests that autistic people have many employment-related strengths that should be recognized and valued by autistic people and employers alike. By understanding the strengths that could be associated with autism in the workplace, autistic people may be better able to identify their own strengths in the workplace (with the help of support workers, where necessary). The results should also encourage employers to make an effort to recruit and retain autistic employees, making appropriate adjustments to interview processes and working conditions, and seeking out training when needed.
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5. Kirby AV, Diener ML, Dean EE, Darlington AN, Myers A, Henderson J. Autistic Adolescents’ and Their Parents’ Visions for the Future: How Aligned Are They?. Autism in Adulthood;2021 (2022/03/01);4(1):32-41.
Introduction: The expectations that individuals hold about the future can influence the decisions they make toward achieving their goals. Existing research suggests that parents of autistic adolescents hold expectations about the future that are significantly related to the postsecondary outcomes they achieve. However, less research exists about the adolescents’ own expectations and the extent to which autistic adolescents and their parents agree about the future. Methods: We used a scoring procedure to ?quantitize? semi-structured interview data about what 46 adolescent?parent dyads envisioned for the future of the autistic adolescent across three areas of adulthood (postsecondary education, employment, and living situation). Adolescents ranged in age from 13 to 19 years (85.1% male) and were able to participate in a verbal interview. We scored the dyads’ interviews on the extent to which they agreed or disagreed about the postsecondary future of the adolescent, as well as whose expectations were higher (when they differed). Results: Fewer than half (37.0%?47.8%) of adolescents and their parents partly or strongly agreed about their visions for the future in each of the three areas. Only 17.4% of dyads partly or strongly agreed across all three areas, and 23.9% did not agree in any area. When adolescents’ and parents’ views differed, adolescents were significantly more likely to have a higher expectation across all three areas (p’s?
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6. Harmens M, Sedgewick F, Hobson H. The Quest for Acceptance: A Blog-Based Study of Autistic Women’s Experiences and Well-Being During Autism Identification and Diagnosis. Autism in Adulthood;2021 (2022/03/01);4(1):42-51.
Background: Although studies have found that autism is underdiagnosed in women and that autistic women have poorer well-being outcomes than men, less is known about autistic women’s experiences with self-identification or diagnosis or how they feel such experiences affect their mental health. Methods: We explored autistic women’s experiences of coming to recognize and understand themselves as autistic. We used data collected from blogs written by autistic women about their diagnostic or self-identification experiences. We were particularly interested in well-being, and how this contributed to, was affected by, and interacted with the identification and diagnostic process. We used thematic analysis to explore and document experiences described in blogs from 20 blogsites (representing the views of 23 autistic women). Results: Acceptance was a central issue. We developed themes of self-understanding and self-acceptance, being understood and accepted by others (including peers, clinicians, and others in the autism community), and the exhaustion resulting from trying to be accepted and be understood. These issues arose both when going through the diagnostic process, and after receiving a formal diagnosis. Conclusions: Diagnosis and identification may have both positive and negative effects on autistic women’s well-being, with women often describing difficulties after diagnosis as stemming from facing male stereotypes of autism. We consider the implications of our findings for clinicians, researchers, and those who work with autistic women.
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7. Mantzalas J, Richdale AL, Adikari A, Lowe J, Dissanayake C. What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms. Autism in Adulthood;2021 (2022/03/01);4(1):52-65.
Background: Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental health risk, to date, only one study has been published. Early research has highlighted the harmful impact of autistic burnout among autistic adults and the urgent need to better understand this phenomenon. Methods: To understand the lived experiences of autistic adults, we used data scraping to extract public posts about autistic burnout from 2 online platforms shared between 2005 and 2019, which yielded 1127 posts. Using reflexive thematic analysis and an inductive ?bottom-up? approach, we sought to understand the etiology, symptoms, and impact of autistic burnout, as well as prevention and recovery strategies. Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight and feedback. Results: We identified eight primary themes and three subthemes across the data. (1) Systemic, pervasive lack of autism awareness. (1.1) Discrimination and stigma. (2) A chronic or recurrent condition. (3) Direct impact on health and well-being. (4) A life unlived. (5) A blessing in disguise? (6) Self-awareness and personal control influence risk. (6.1) ?You need enough balloons to manage the weight of the rocks.? (7) Masking: Damned if you do, damned if you don’t. (8) Ask the experts. (8.1) Stronger together. The overarching theme was that a pervasive lack of awareness and stigma about autism underlie autistic burnout. Conclusions: We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people’s functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.
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8. Strömberg M, Liman L, Bang P, Igelström K. Experiences of Sensory Overload and Communication Barriers by Autistic Adults in Health Care Settings. Autism in Adulthood;2021 (2022/03/01);4(1):66-75.
Background: Autistic adults have an elevated risk of many health problems compared with the general population, making health care access extra critical. Unfortunately, autistic people often find health care settings quite aversive, and many medical providers report feeling unsure about how to interact with autistic patients. We aimed at characterizing specific challenges regarding sensory experiences and communicative barriers in health care settings. Methods: We recruited adults to complete an anonymous online questionnaire on the topic of improving health care experiences for everyone. The questions covered demographics, sensory experiences in medical settings, and communication with health care providers. We quantified the associations between autism diagnosis and experiences of sensory discomfort and communication barriers in health care settings. We also did a qualitative analysis of text responses to questions on how to improve sensory environments and communication with providers. Results: Swedish adults (62 autistic and 36 nonautistic) participated in the study. The cohort was well educated, and autistic participants received their autism diagnosis late in life (median age 36 years, range 13?57). Compared with nonautistic participants, autistic participants reported greater discomfort with background sound levels in health care settings and felt more misunderstood by health care providers. Thematic analyses showed that auditory stimuli and proximity to other people were particularly bothersome for autistic participants, causing stress or avoidance and affecting the ability to interact with providers. Providers contributed to communication barriers by failing to recognize the need for individualized information, especially when respondents’ difficulties were not visible or taken seriously. Participants requested greater clarity and supplementary written information. Providers also misunderstood autistic adults’ body language or eye contact patterns, as they interpreted their clients through the lens of neurotypical expectations. Conclusions: Our results extend previous research by emphasizing sensory aspects of health care settings and suggesting specific and reasonable adaptations. The results also highlight how the provider’s implicit expectations of nonverbal communication caused misinterpretations of autistic people who were socially skilled but did not use typical body language. Based on the data, we suggest specific adaptations, many of which may also benefit nonautistic people.
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9. Turnock A, Langley K, Jones CRG. Understanding Stigma in Autism: A Narrative Review and Theoretical Model. Autism in Adulthood;2022 (2022/03/01);4(1):76-91.
The experience of stigma by autistic people is relatively understudied, despite contributing to a range of poor outcomes and having an overarching impact on well-being. The current review of the literature synthesizes research to determine what is currently known and presents a theoretical model of autism stigma. Autism stigma is primarily influenced by a 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 well-being as well as increase the presence of camouflaging behaviors, which mask autistic traits. Caregivers of autistic people can experience stigma by association, that is, affiliate stigma, which can impact their own well-being. 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 recognize neurodiversity.
