Autism in Adulthood : State of the Science - 3-1 - March 2021

dimanche 22 mars 2020

1. Call for Papers : Autism in Adulthood. Autism in Adulthood ;2021 ;3(1):1-1.

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2. The State of the Science on Autism in Adulthood : Building an Evidence Base for Change. Autism in Adulthood ;2021 ;3(1):2-4.

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3. Toward a Neuroqueer Future : An Interview with Nick Walker. Autism in Adulthood ;2021 ;3(1):5-10.

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4. An Expert Discussion on Knowledge Translation in Autism in Adulthood Research. Autism in Adulthood ;2021 ;3(1):11-17.

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5. Avoiding Ableist Language : Suggestions for Autism Researchers. Autism in Adulthood ;2021 ;3(1):18-29.

In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices.

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6. Advancing Mental Health Supports for Autistic Postsecondary Students : A Call for Research. Autism in Adulthood ;2021 ;3(1):30-36.

Research has documented elevated rates of co-occurring depression and anxiety in autistic adults, with some noting particularly high rates for autistic students enrolled in postsecondary education (PSE). Difficulty coping with the stressors that accompany daily life as they navigate college campuses may contribute to development or exacerbation of co-occurring conditions. Autistic students have reported that depression, anxiety, and stress interfere with their success in college, but that they have difficulty identifying and accessing the supports that they need. Though many postsecondary institutions have established programs that provide academic supports to autistic students, few programs directly support mental health and wellness. Recently, stakeholders have advocated for mental health to be prioritized in adult autism research. We suggest that a specific focus on autistic students in PSE is warranted and provide a brief overview of the relatively limited literature in this area. To inform development of mental health services and supports that will be both accessible and acceptable to the range of autistic students attending PSE, research is recommended in four areas : factors positively and negatively affecting mental health, types of supports, outreach, and on-campus training and education. It will be essential for researchers to establish community partnerships with autistic individuals to inform study design and specific research questions. This will ensure that autistic voices guide development of supports that will foster positive mental health in PSE and beyond.

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7. Assessing Activity of Daily Living Task Performance Among Autistic Adults. Autism in Adulthood ;2021 ;3(1):37-51.

Activities of daily living (ADLs) are activities that people engage in on a routine basis, such as brushing their teeth, preparing a meal, and caring for their child. Independence with ADLs is associated with better outcomes in independent living, education, employment, relationships, and mental health. Therefore, this perspective piece includes a review of the literature and assessment databases to identify and summarize ADL assessments for Autistic adults. These assessments were compared and analyzed using the neurodiversity paradigm. Specifically, we compared assessments using predetermined priorities the authors identified : (1) assessment type, (2) inclusivity, and (3) performance factors. We identified five unique norm-referenced measures, four performance-based measures, and a variety of checklists, surveys, questionnaires, and/or interviews used to assess ADL performance among Autistic adults. The authors present their perspectives regarding the challenges with the current assessments, including the high-frequency use of norm-referenced assessments, lack of inclusivity, and failure to consider performance factors (e.g., sensory, motor, and emotional), and the paucity of assessments designed specifically for Autistic adults older than 30 years. In response to these challenges, we recommend researchers partner with Autistic adults to develop a new assessment tool. If researchers or clinicians are using existing measures, we recommend that they utilize self-report over proxy-report and include methods to improve the accessibility of the assessment. We also recommend that clinicians and researchers offer breaks, comfort objects, or sensory modifications during the assessment to decrease anxiety ; and ask follow-up questions to understand whether environment or emotional health are impacting one’s ADL performance.

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8. A Conceptual Analysis of Autistic Masking : Understanding the Narrative of Stigma and the Illusion of Choice. Autism in Adulthood ;2021 ;3(1):52-60.

Autistic masking is an emerging research area that focuses on understanding the conscious or unconscious suppression of natural autistic responses and adoption of alternatives across a range of domains. It is suggested that masking may relate to negative outcomes for autistic people, including late/missed diagnosis, mental health issues, burnout, and suicidality. This makes it essential to understand what masking is, and why it occurs. In this conceptual analysis, we suggest that masking is an unsurprising response to the deficit narrative and accompanying stigma that has developed around autism. We outline how classical social theory (i.e., social identity theory) can help us to understand how and why people mask by situating masking in the social context in which it develops. We draw upon the literature on stigma and marginalization to examine how masking might intersect with different aspects of identity (e.g., gender). We argue that although masking might contribute toward disparities in diagnosis, it is important that we do not impose gender norms and stereotypes by associating masking with a “female autism phenotype.” Finally we provide recommendations for future research, stressing the need for increased understanding of the different ways that autism may present in different people (e.g., internalizing and externalizing) and intersectionality. We suggest that masking is examined through a sociodevelopmental lens, taking into account factors that contribute toward the initial development of the mask and that drive its maintenance.

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9. A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults. Autism in Adulthood ;2021 ;3(1):61-71.

The emergence of critical autism studies has fueled efforts to interrogate how autistic people are studied and described in academic literature. While there is a call for research that promotes better well-being for autistic people, little attention has been paid to the concept of well-being itself. Just as the medical model limits critical understandings of autism in the academic literature, so too may psychological accounts of well-being limit, rather than expand, possibilities of living a good life for autistic people. The purpose of this critical review was to identify and critique how well-being in autistic adults is constructed in research. Based on a systematic search of peer-reviewed empirical research published from 2013 to 2020, we identified 63 articles that involved direct data collection with autistic adults and focused on well-being constructs such as quality of life, life satisfaction, and happiness. We examined the articles using the techniques of critical discourse analysis to discern assumptions underlying constructions of autistic well-being, with special attention to the axiological and teleological contributions of autistic perspectives in the research and writing processes. We identified several approaches through which the literature constructed autistic well-being : (1) well-being as an objective uncontested variable, (2) well-being as personal and not fixed, (3) well-being that warrants a specific measure for the autistic population, and (4) well-being as a situated account that privileges and centers autistic people’s perspectives. We subject these accounts to critical analysis, pointing to how they limit and open life possibilities for autistic people. We recommend that researchers and practitioners critically reflect on how they engage autistic adults and use their input to create works that support well-being in ways that are meaningful and ethical to autistic adults, as well as do justice to changing broader narratives of autism in research and society.

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10. Benefits and Risks : A Systematic Review of Information and Communication Technology Use by Autistic People. Autism in Adulthood ;2021 ;3(1):72-84.

Background : Communication via the internet is a regular feature of everyday interactions for most people, including autistic people. Researchers have investigated how autistic people use information and communication technology (ICT) since the early 2000s. However, no systematic review has been conducted to summarize findings. Objective : This study aims to review existing evidence presented by studies about how autistic people use ICT to communicate and provide a framework for understanding contributions, gaps, and opportunities for this literature. Methods : Guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses(PRISMA) statement, we conducted a comprehensive review across five databases, searching for studies investigating how autistic youth and adults use ICT to communicate. Authors reviewed the articles for inclusion and assessed methodological quality. Results : Thirty-two studies met the eligibility criteria, including 19 quantitative studies, 12 qualitative studies, and 1 mixed methods study, with data from 3026 autistic youth (n = 9 studies) and adults (n = 23 studies). Ratings suggest that the evidence base is emergent. Underrepresented groups in the sample included autistic women, transgendered autistic people, non-White autistic people, low income autistic people, and minimally speaking and/or autistic adults with co-occurring intellectual disability. Three main themes emerged, including variation in ICT communication use among autistic youth and adults, benefits and drawbacks experienced during ICT communication use, and the engagement of autistic youth and adults in the online autism community. Conclusions : Further exploration of the positive social capital that autistic people gain participating in online autism communities would allow for the development of strengths-based interventions. Additional research on how autistic people navigate sexuality and ICTs is needed to identify mechanisms for reducing vulnerability online. Additional scholarship about underrepresented groups is needed to investigate and confirm findings regarding ICT communication use for gender, racial, and socioeconomic minority groups.

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11. Supporting Autistic Adults in Postsecondary Settings : A Systematic Review of Peer Mentorship Programs. Autism in Adulthood ;2021 ;3(1):85-99.

Background : The number of autistic individuals attending college or university is increasing, yet graduation rates are low as postsecondary environments often fail to support autistic students’ individual needs. Peer mentorship programs are emerging as a promising approach for providing individualized, one-on-one support to meet this service gap for autistic postsecondary students. However, no literature has systematically described these programs. Methods : We conducted a systematic review that described existing peer mentorship programs for autistic students in postsecondary education as well as their effectiveness. Results : Our search of five databases found nine unique programs that were evaluated in 11 peer-reviewed articles. Programs reported positive outcomes in various domains, which included social skills, academic performance, and sense of belonging. The evidence for these programs was primarily qualitative, sample sizes were small, and there was considerable heterogeneity in the format, provision, and goals of these programs, as well as the evaluation methods used. Conclusions : Overall, the state of the research related to the efficacy of peer mentorship programs for autistic students remains in its infancy, and further research is needed to quantify effectiveness and enable program comparisons.

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12. Pregnancy and Parenthood Among Autistic Adults : Implications for Advancing Maternal Health and Parental Well-Being. Autism in Adulthood ;2021 ;3(1):100-115.

Background : Strikingly little research has considered how autistic adults experience pregnancy and parenthood, two key transition periods in adult development with potentially far-reaching implications for physical and psychosocial health outcomes across the lifespan. This article reviews the research on pregnancy and parenthood among autistic adults, to summarize existing research and identify future directions to advance this critical area of study. Methods : We conducted a systematic review of the literature on pregnancy and parenthood among autistic adults. Researchers extracted selected articles for key information, including methodology and sample size, study location, demographic characteristics of participants, measurement approaches, and key study findings. Results : Overall, we identified 13 studies that used a range of quantitative and qualitative approaches to study pregnancy experiences and outcomes and parenthood among autistic adults. The findings show that autistic adults (1) experience difficulties and dissatisfaction communicating with health care providers throughout pregnancy and birth, (2) are more likely to experience depression during and after pregnancy, and (3) experience higher rates of pregnancy complications, including preterm birth, cesarean delivery, and pre-eclampsia. During parenthood, autistic adults report lower parenting competence, experience parenthood as isolating, have difficulty communicating with professionals about their child and are questioned by providers about their ability to parent, experience high rates of involvement with child protective services, and express a desire for increased parenting support. Autistic adults also reported parenting strengths, including high levels of finding parenthood rewarding and putting their children’s needs ahead of their own. Conclusions : A key limitation of the literature is the significant lack of sociodemographic diversity among participants, the small number of existing studies, and reliance on cross-sectional mono-method designs. Future research should be conducted in partnership with autistic adults to develop assessment and intervention approaches for supporting pregnancy health and parental well-being among diverse and underserved communities.

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