Autism in adulthood : challenges and management最新文献

Background: Language around autism plays a crucial role in shaping public attitudes toward autistic people. The use of identity-first versus person-first language and impersonal references to autism can affect how autistic people are perceived. These factors should impact the representation of autistic people in newspapers, where negative and stereotypical representations are often perpetuated.

Method: We asked five autistic people to judge the sentiment toward autism and autistic people in 1000 quotes from British newspapers (2011-2020). The coders, who did not know the newspaper title and time of publication, made their judgments based on two dimensions, warmth and competence, from the Stereotype Content Model (SCM). We examined the overall judgments of warmth and competence and considered variations in language context and terminology, such as the use of impersonal references to autism or identity-first and person-first language. We also examined potential differences between broadsheets and tabloids, left- and right-leaning newspapers, and changes over time.

Results: The majority of quotes from British newspapers fell under a low warmth and low competence area within SCM. Furthermore, impersonal references to autism tended to be rated lower in warmth and competence than references linking autism to an individual, whereas identity-first language was judged higher in warmth and competence than person-first language. Quotes from broadsheets were assigned similar warmth and slightly higher competence than quotes from tabloids. However, left-leaning and right-leaning papers did not differ regarding warmth and competence, and there were inconsistent changes over time.

Conclusion: Our study confirms that the portrayal of autistic people in British newspapers tends to be negative. According to autistic raters, associating autism with a person and using identity-first language are linked to more positive representations. Although we found subtle variations in sentiment related to reporting style, our study shows little progress over time toward more positive portrayals.

Background: To accurately measure quality of life among autistic adults, researchers need surveys that are psychometrically validated for autistic populations. Researchers have demonstrated that the short version of the World Health Organization Quality of Life instrument (WHOQOL-BREF) has strong psychometric properties in the general population. Although there has been some research exploring basic psychometric properties (reliability, convergent validity, etc.) of the WHOQOL-BREF in autistic populations, the underlying latent structure of the measure has not been tested in autistic adults. Our goal in the current study was to compare different confirmatory factor analysis (CFA) models to test which one best captured the underlying latent structure of the WHOQOL-BREF data in a sample of autistic adults.

Methods: A total of 842 autistic adults between the ages of 18 and 83 years completed the WHOQOL-BREF. Based on participant responses, we compared four a priori CFA models-correlated four-factor, unidimensional, higher-order, and bifactor models-to demonstrate which model structure best captures the underlying latent structure of the measure in this population.

Results: Similar to past research, the WHOQOL-BREF showed strong internal reliability in our sample of autistic adults. The bifactor model demonstrated the best fit to the data-demonstrating that the WHOQOL-BREF is best conceptualized as having both domain-specific quality-of-life factors (i.e., the Physical, Psychological, Environmental, and Social domains of the WHOQOL-BREF) and a general quality-of-life factor.

Conclusion: Our results provide researchers with psychometric validation of the underlying latent structure of the WHOQOL-BREF in autistic populations. Items on the WHOQOL-BREF capture both domain-specific and general quality of life among autistic adults. Researchers can use the bifactor model to accurately capture multiple dimensions of quality of life in autistic adults, advancing the ways that the WHOQOL-BREF can be used as a measure of quality of life among autistic people.

Background: Separately, autistic and LGBTQIA+ people report experiencing negative social participation outcomes. Specifically, autistic individuals report fewer friendships but a desire for them. LGBTQIA+ individuals report experiences of family rejection, microaggressions from friends, and discrimination. Based on intersectionality theory, we hypothesize that individuals who are both autistic and LGBTQIA+ may have additional challenges with social participation and require unique support. Therefore, in this study, we aim to describe the experiences of social participation and the supports and barriers for autistic LGBTQIA+ adults.

Methods: This analysis utilized data from a mixed-method, participatory research study, including qualitative data from 57 LGBTQIA+ autistic adults and quantitative survey data from 107 LGBTQIA+ autistic adults. Qualitative data were collected through virtual semi-structured interviews or focus groups and analyzed using interpretative phenomenological analysis. Analysts used an audit trail and negative case analysis and checked for representativeness of the data across participants to ensure trustworthiness of data. A survey was developed using the findings from the qualitative data and built in Qualtrics for dissemination. Survey data were analyzed using descriptive statistics and merged with qualitative data.

Results: Participants discussed relationships with family, friends, and intimate partners-however, primarily focused on friendships. Participants described how they "found their people" serendipitously, through shared interests or hobbies, or intentionally online. A subset of participants reported challenges "finding their people," with specific barriers being challenges online and inaccessibility within LGBTQIA+ spaces and events. Participants reported strategies to safely move relationships from online to in-person, such as identifying safe, accessible social activities of shared interest with their friend or intimate partner(s).

Conclusions: Autistic LGBTQIA+ adults validate the importance in "finding their people," yet not all autistic LGBTQIA+ adults have successfully developed these relationships. Identified supports and barriers indicate a need for more support to help LGBTQIA+ autistic individuals connect in person, including moving online relationships safely to in-person activities. In addition, these results suggest the need for increasing accessibility of LGBTQIA+ events, such as additional structured activities within the LGBTQIA+ communities and sensory-friendly Pride event options.

Background: Although previous qualitative work has identified the role of intolerance of uncertainty in the development of anxiety in autism, there has been little research on what uncertainty means exactly for autistic people and/or what types of uncertainties may be particularly anxiety provoking.

Methods: Fifteen autistic adults (five women) took part in this qualitative interview study in which we probed their understanding and experiences of uncertainty and its links to feelings of anxiety. We applied a grounded theory approach to transcripts of the interviews, broadly following Charmaz's constructivist epistemology, to derive a theory of uncertainty as it is experienced by the autistic people we interviewed.

Results: From the interviews, we derived a model of uncertainty, which identified three different levels of uncertainty, ranging from the certainty of the "known," through to the relatively manageable uncertainty of the "known unknown," to the anxiety-provoking "unknown unknown" or that which cannot be made known. We propose in this model that anxiety can be understood as resulting from difficulties with avoiding or controlling the latter types of uncertainty through planning or information gathering.

Conclusion: Previous researchers had treated uncertainty as a unified construct. However, they may not have explored what uncertainty might mean for autistic people. We have shown in this study that not all uncertainties are experienced equally. We hope that this research will help develop a more nuanced understanding and that it constitutes the first step in disentangling anxiety from intolerance of uncertainty in autism.

Background: Nonsuicidal self-injury (NSSI) affects many autistic individuals, and has been linked to suicidality in this group. It has been closely linked to difficulties with intrapersonal emotion regulation, but a role of interpersonal emotion regulation processes in NSSI has been underexplored. Empathic disequilibrium is a state of imbalance between a person's cognitive empathy (CE) and emotional empathy (EE). We recently found that autistic people exhibit heightened EE relative to CE, consistent with their firsthand reports of hypersensitivity to the emotions of others. Because this kind of empathic imbalance is associated with hyperarousal and emotional reactivity, we hypothesized that it might increase the risk of NSSI, which often occurs as a means of trying to regulate overwhelming or distressing emotions.

Methods: We measured CE, EE, emotional reactivity, and NSSI behaviors in 304 autistic and 289 nonautistic participants, and used polynomial regression with response surface analysis to examine empathic disequilibrium as a predictor of emotional reactivity and engagement in NSSI.

Results: Replicating previous research, individuals with an autism diagnosis were more likely to show a pattern of EE-dominance (OR = 4.51 [2.66, 7.63], p < 0.001), although they did not differ significantly in overall empathy levels. While empathic disequilibrium was associated with NSSI in autistic and nonautistic people, the nature of these pathways differed between groups. In autistic people, empathic disequilibrium toward EE-dominance was associated with a higher incidence of NSSI through emotional reactivity. In contrast, for nonautistic individuals, the incidence of NSSI was associated with overall empathy and, when accounting for emotional reactivity, with empathic disequilibrium toward CE dominance.

Conclusions: While future studies should investigate the direction of relationships with longitudinal designs, these findings highlight different mechanisms for NSSI in autistic and nonautistic people. They corroborate growing evidence that the relative imbalance between empathic abilities may be relevant for meaningful outcomes, such as psychopathology.

Background: Although autistic individuals can require more health care services than the general population, the care they receive is often suboptimal. During young adulthood, autistic patients face additional developmental barriers and achieve poorer medical outcomes as they transition between pediatric and adult health systems. However, little is known about their transition needs, perceptions, and experiences.

Methods: This study examined the health care experiences and transition perceptions of 213 autistic young adults aged 18-26 years (mean age 22.72). Both formally diagnosed and self-identified autistic individuals participated in the study. Our research team used mixed methods online survey, including an original health care experience questionnaire, an adapted measure of health care transition readiness, and short-answer questions. We used nonparametric statistical tests to examine relationships between quantitative variables, and qualitative responses were analyzed using an inductive, open-coding approach.

Results: Quantitative analyses revealed health care environments to be least accessible for individuals who are female or gender nonconforming, nonspeaking, and/or in their late teenage years. These individuals also showed lower levels of involvement in their own care compared with other subgroups. Conversely, those with a history of regular medication management reported higher levels of readiness for health care transition. Open-ended survey responses clustered around the following five themes: (1) deciding whether to disclose an autism diagnosis, (2) medical staff's current understanding of autism, (3) discrimination, (4) communication challenges, and (5) unique needs.

Conclusion: Participants in this study preferred to be actively involved in their health care and required supportive, knowledgeable providers and inclusive environments to accomplish this goal. Noting this, it is important for health care providers to assess individual needs and preferences and design focused supports for autistic patients transitioning from pediatric to adult care.

Given the dearth of research on adulthood in autism prior to the last decade, we need methods to accelerate progress. One area of interest is mental health, but studies focusing on isolated methods or limited sets of constructs are unlikely to rapidly identify the many contributors to autistic adult mental health outcomes. We argue that adopting a multimethod, dimensional approach will more rapidly speed progress. One framework designed to encourage this approach is the National Institute of Mental Health (NIMH)'s Research Diagnostic Criterion initiative (RDoC). In this paper, we describe the utility of RDoC and considerations for the design of an RDoC-inspired autism study. We demonstrate this via an example focused on suicide because suicide is one serious and well-documented sequelae of poor mental health. This paper begins with a brief overview of the significance of suicide to autism. Then, the paper outlines key aspects of the RDoC, including consideration of the following: dimensional processes, development, different units of analysis (methods), content domains, and environmental influences. We describe the University of Pittsburgh Autism Center of Excellence (Pitt ACE) as project context; it adds an example of how RDoC can work and concepts to consider when designing an RDoC-inspired autism study. Specific methods and constructs are highlighted that may lead to improved understanding of suicide and mental health in autistic adults, and ultimately more tailored interventions and supports.

Background: Previous literature indicates a proportional overrepresentation of both autism and autistic traits within gender-diverse populations (individuals who experience their gender identity as different from their sex assigned at birth). Emerging but limited evidence also suggests a proportional overrepresentation of gender-diverse identities in autism. To our knowledge, this is the first study to report gender diversity prevalence in autistic adults in the United States.

Methods: We report the prevalence of gender diversity within two well-characterized samples of autistic adults recruited from SPARK (Simons Foundation Powering Autism Research for Knowledge), the largest online research database of autistic individuals to date. This study includes both an original sample (Dataset 1, n = 205) and a replication sample (Dataset 2, n = 243). In addition, we looked at the co-occurrence of anxiety and/or mood disorders with gender-diverse identities.

Results: We found that 16.1% of autistic adults in Dataset 1 and 19.8% of autistic adults in Dataset 2 were gender diverse. This compares with prior findings of 0.5% to 4.5% in the general adult population. Autistic participants who were gender diverse, compared with those who were not, were up to six times more likely to report diagnosed anxiety and/or mood disorder(s). The finding of proportional overrepresentation of gender diversity in autistic individuals is consistent with reports from other countries, and higher than some previous estimates (e.g., 15%).

Conclusion: These findings point to the necessity for autism research to take gender identity into account in addition to sex assigned at birth, and to pay particular attention to the mental health challenges that gender-diverse autistic individuals may face. These important steps will lead toward increased understanding of the needs of gender-diverse autistic individuals and ways to improve care.