Autism in adulthood : challenges and management最新文献

Background: Autistic people in France have called for community education to reduce autism stigma. As such, training is needed to help university students appreciate autistic peers and autistic people they may work with in their future careers.

Methods: We adapted an autistic-affirming training from a training developed in other cultural contexts and evaluated it with 107 university students in France using a pretest-post-test design.

Results: Questionnaire responses suggested that our brief online training helped improve attitudes toward inclusion, autism knowledge, and stigma among future educators and psychologists in France. Participants' open-ended definitions of autism revealed increased alignment with the neurodiversity movement after training.

Conclusions: Findings suggest that wider-scale autistic-led adaptations of autism trainings like the one described in this report could begin to ameliorate autism stigma in France.

Background: Autistic individuals might undergo a magnetic resonance imaging (MRI) examination for clinical concerns or research. Increased sensory stimulation, lack of appropriate environmental adjustments, or lack of streamlined communication in the MRI suite may pose challenges to autistic patients and render MRI scans inaccessible. This study aimed at (i) exploring the MRI scan experiences of autistic adults in the United Kingdom; (ii) identifying barriers and enablers toward successful and safe MRI examinations; (iii) assessing autistic individuals' satisfaction with MRI service; and (iv) informing future recommendations for practice improvement.

Methods: We distributed an online survey to the autistic community on social media, using snowball sampling. Inclusion criteria were: being older than 16, have an autism diagnosis or self-diagnosis, self-reported capacity to consent, and having had an MRI scan in the United Kingdom. We used descriptive statistics for demographics, inferential statistics for group comparisons/correlations, and content analysis for qualitative data.

Results: We received 112 responses. A total of 29.6% of the respondents reported not being sent any information before the scan. Most participants (68%) confirmed that radiographers provided detailed information on the day of the examination, but only 17.1% reported that radiographers offered some reasonable environmental adjustments. Only 23.2% of them confirmed they disclosed their autistic identity when booking MRI scanning. We found that quality of communication, physical environment, patient emotions, staff training, and confounding societal factors impacted their MRI experiences. Autistic individuals rated their overall MRI experience as neutral and reported high levels of claustrophobia (44.8%).

Conclusion: This study highlighted a lack of effective communication and coordination of care, either between health care services or between patients and radiographers, and lack of reasonable adjustments as vital for more accessible and person-centered MRI scanning for autistic individuals. Enablers of successful scans included effective communication, adjusted MRI environment, scans tailored to individuals' needs/preferences, and well-trained staff.

Several critiques have emerged of the neurodiversity paradigm and of claims made by activists in the Neurodiversity Movement. These critiques include concerns that the Neurodiveristiy movement downplays the differences between Autistic people. In this article, I argue that the neurodiversity paradigm is a strategically adopted response to current realities. Sometimes, it is strategically necessary to appeal to existing narratives about Autism, or to emphasize solidarity within the Autistic community over the autism spectrum's internal diversity. At times, this can lead activists to neglect a more nuanced articulation of the Neurodiversity paradigm, which allows for the diversity of our community while still calling for solidarity in the face of shared experiences of discrimination. I compare this strategy with strategies of strategic essentialism utilized in the Indigenous Rights movement in Canada. I also explore the ways in which discourses of ableism and racism have historically been intertwined. Both Autistic people and Indigenous people represent diverse communities that must grapple with externally imposed identities to access legal rights, and both identities have been denigrated as mentally inferior by non-Autistic and colonial powers. I conclude that it is sometimes necessary to employ these types of strategies to secure needed resources and protections. I call for both scholars and advocates to take a more intersectional approach to understanding how strategic essentialism is being deployed within the Neurodiversity Movement.

Background: Autistic people experience higher rates of most mental health conditions and report more difficulties with change than nonautistic people. As such, the periods of national stay-at-home orders (known in the United Kingdom as a "lockdown") endured since the beginning of the COVID-19 (coronavirus disease 2019) pandemic in March 2020 may have been particularly challenging for autistic people.

Aim: This study explored autistic adults' experience of quality of life and well-being during the start of the COVID-19 pandemic (specifically March to August 2020) using open-text responses from an online survey.

Methods: In total, 79 autistic adults from the United Kingdom (aged 21-75 years) took part. Participants completed an online survey, including open-text questions on how various factors influencing quality of life, such as social interactions, general health, well-being, and sensory experiences, were impacted by the COVID-19 pandemic and the first set of national lockdowns that occurred between March and August 2020.

Results: Thematic analysis created four key themes, each illustrated by several subthemes. These four themes explore (1) health, (2) social changes, (3) support provisions, and (4) adopting new routines. Many participants discussed the impact that the COVID-19 pandemic and the first set of national lockdowns had on their health and expressed concerns regarding the transition out of periods of lockdown, including readjusting to new rules, going back to in-person interactions, and reacclimatizing to high-stimulation sensory environments. However, several participants reported positive experiences of the periods of lockdown, such as reduced commuting, more control over sensory environments, and more time to pursue personal interests and self-care.

Conclusions: These findings highlight the importance of giving autistic individuals the support they need to transition back to "normality" as COVID-19 becomes endemic.

Background: Emotion regulation is one of the key factors that influence mental health outcomes in autistic and nonautistic populations. Recent research has also identified self-compassion as a negative correlate of depression and positive correlate of psychological well-being in autistic adults. Empirical evidence from the general population supports the notion that being kind and compassionate toward oneself during stressful and difficult moments can help with one's ability to regulate negative emotions, which then has flow-on effects on mental health outcomes. However, the inter-relationship between self-compassion, emotion regulation, and mental health has not been examined in autistic samples. Therefore, the aim of this study was to determine if emotion regulation mediates the relationship between self-compassion and anxiety or depression in a sample of autistic adults.

Methods: Participants were 153 adults (mean_age = 35.70, standard deviation_age = 12.62) who had either self-reported a clinical diagnosis of autism spectrum disorder or self-identified as autistic. They completed an online survey capturing self-compassion, emotion regulation, anxiety, and depression. We hypothesized that emotion regulation would mediate the relationship between self-compassion and anxiety or depression, and self-compassion would not mediate the relationship between emotion regulation and anxiety or depression.

Results: As predicted, only emotion regulation mediated the relationship between self-compassion and mental health outcomes. Self-compassion did not mediate the relationship between emotion regulation and mental health outcomes.

Conclusion: This study provides preliminary evidence for the role that self-compassion plays in improving emotion regulation and mental health in autistic adults. If this mechanism of emotion regulation mediating the relationship between self-compassion and mental health is consistently found in future studies, then it would be helpful for future research to examine the clinical benefits of including a self-compassion component in emotion regulation interventions to improve mental health outcomes of autistic adults.

Background: Although disparities in mental health and subjective quality of life (QoL) have been reported for autistic adults, reasons for these disparities are poorly understood. A potential factor in these disparities is exposure to social stressors related to minority status (i.e., minority stress), including stigma and discrimination. Autistic individuals are more likely than nonautistic individuals to be from groups with other minority identities, including sexual minorities (i.e., sexual orientations such as asexual, bisexual, gay). However, to date, few studies have examined whether sexual minority autistic adults experience diminished mental health relative to heterosexual autistic adults, and no research has examined subjective QoL for sexual minority compared with heterosexual autistic adults.

Methods: Participants were 651 autistic adults aged 18.5 to 83.3 years recruited through Simons Powering Autism Research's Research Match. All participants resided in the United States. Participants completed surveys online, including measures of anxious and depressive symptomatology, perceived stress, and subjective QoL. Participants reported their sexual orientation and other sociodemographic variables.

Results: A large proportion of autistic adults reported a sexual minority identity (41.2%), and a diversity of sexual identities was reported. Sexual minority autistic adults reported poorer mental health and lower subjective QoL across all assessed domains relative to heterosexual autistic adults.

Conclusion: Understanding factors that may be associated with poorer mental health and decreased subjective QoL in autistic adults is critical and has been identified as a research priority by autistic stakeholders. The findings reported here underscore the need to examine mental health and subjective QoL disparities among autistic individuals within a societal context, taking into consideration the potential of intersecting minority identities and increased social stressors, as these added stressors may increase risks for poorer outcomes.

Background: Lesbian, gay, bisexual, transgender, or queer (LGBTQ+) people and disabled people experience disparities in access to health care compared with others. However, we have yet to understand how health care disparities may be further exacerbated at the intersection of disability and LGBTQ+ identity, particularly among autistic people.

Objectives: The primary goals of this study were to (1) examine differences in unmet health care needs and health status between LGBTQ+ autistic people and straight/cisgender autistic people and (2) explore how state policies and demographics predict the unmet health care needs of the autistic LGBTQ+ people.

Methods: We conducted a cross-sectional analysis using data from the 2019 National Survey on Health and Disability that included a subsample of autistic participants, with 62 LGBTQ+ adults and 58 straight/cisgender adults. To address our first study goal, we used an independent samples t-test, and to address our second study goal, we used Poisson regression.

Results: The LGBTQ+ group reported significantly more days of poor physical and mental health, more co-occurring diagnoses, and more unmet health care needs than the straight/cisgender group. For LGBTQ+ people, protective state health care laws and a lower income resulted in significantly more health care needs being met.

Conclusions: Findings from this study suggest that the intersection of an LGBTQ+ identity and autism is associated with greater disparities in physical and mental health as well as unmet health care needs; however, state policies prohibiting discrimination of LGBTQ+ people may act as a protective factor and result in fewer unmet health care needs. Future research should examine additional structural factors that may mitigate health inequities for autistic LGBTQ+ people.

Many transgender people are autistic. Community expressions of the autism transgender intersection abound. Some commentators have questioned the proportional overrepresentation of autism among gender-diverse people, suggesting these individuals may not be truly autistic or truly transgender. However, increasing evidence challenges assertions that deny the authenticity of co-occurring autistic and transgender identities. Specifically, research by authors of this article indicates autistic transgender people show neurophenotypes generally consistent with cisgender autistic people and implicit gender phenotypes consistent with nonautistic transgender people. This article features a dialogue between eight leading experts in the field of intersectional autism and gender diversity, including clinicians, researchers, community advocates, and experts who are themselves autistic transgender. Key topics of discussion included: how research findings on autism and gender diversity inform respectful and supportive responses to autistic transgender people; the benefits and harms of increased societal attention toward the autism transgender intersection; and research and advocacy priorities. The expert panel concluded the following: (1) it is important to respect transgender autistic people's wellness and resilience, while also acknowledging the pathologization and stigmatization they face; (2) autistic gender-diverse people are experts of their own identity and should be involved in all aspects of research and clinical care; (3) research is needed to understand the disparities autistic transgender people face; (4) attempts to restrict autistic transgender people's access to gender care are unsupported by existing research; (5) adult gender care may benefit from incorporating universal design principles and neurodiversity-affirming strategies to reduce barriers to care and improve clinician-client communication in treatment delivery and the informed consent process; (6) cross-cultural and cross-societal research will improve best care practices in diverse contexts; (7) research and advocacy must be inclusive across ethnoracial identities, including in leadership and perspectives represented; and (8) a life span developmental framework is needed for adult research in this field.

Background: This study sought to obtain an in-depth understanding of autistic transgender and/or non-binary adults' experiences in accessing, or trying to access, gender identity health care (GIH). To our knowledge, no prior study researched this topic.

Methods: Through semi-structured interviews, we obtained the first-hand experiences of 17 participants. H.B. (cisgender, non-autistic) conducted a reflexive thematic analysis using an inductive approach, in collaboration with K.M., an autistic transgender disability community researcher, and under the supervision of S.K.K., a cisgender autistic autism researcher.

Results: Thematic analysis determined that poor knowledge of professionals, accessibility issues, and bureaucratic and economic barriers impacted participants' experiences when accessing GIH. Participants experienced a perceived lack of professional knowledge around autism and gender diverse health care needs, limited communication methods and accommodations, and misdiagnosis of mental health difficulties. Accessibility issues included unmet sensory needs, disruption to routine, and a lack of local provision. Further, participants shared that they struggled with unclear processes, standardization of care, long waiting lists, and confusing or inaccessible insurance coverage. Recommendations for improvements highlighted the need to listen to service users to positively impact their experiences in accessing GIH.

Conclusion: This study suggests that more training needs to be given to health care providers and professionals around autistic experience to help improve providers' competence in communication and providing person-centered accommodations. More training around gender diverse identities is needed, as well as increased knowledge on the co-occurrence of autism and transgender/non-binary identities, to positively impact patient experiences and help improve access to care.