Autism in adulthood : challenges and management最新文献

Background: Autism researchers often use questionnaires to gather the views and experiences of autistic people. However, questionnaires may not always be designed in accessible ways. In addition, answering questions within a questionnaire involves decision making, which some autistic people have reported finding difficult. Therefore, this exploratory study aimed to enhance our understanding of autistic people's experiences of decision making, and to analyze their feedback on questionnaire measures to further understand decision making within the research context.

Methods: One hundred seventeen participants completed an online questionnaire. In the questionnaire, they answered an open question about what affected their ability to make decisions. They then completed four questionnaire measures and after each one provided feedback. We used content analysis to categorize participants' qualitative answers.

Results: Participants discussed how their internal state, other people, the quality and quantity of information, pressure on choosing a response, external distractions, and lack of time all affected their decision making. Feedback on the questionnaires highlighted how questions needed context, often questions themselves were unclear and difficult to understand, that there were issues with Likert scales, and how measures could have questionable validity for autistic people.

Conclusions: Autism researchers need to consider how they can make their research as accessible as possible for autistic people. Our study highlights how decision making is not a straight-forward process, and researchers have a role in ensuring they give their participants clear and contextualized information. Involving autistic people in the design of research is a potential way of improving the quality of research.

Early-career researchers (ECRs) are among the most creative, talented, and energetic researchers, and they play an important role in knowledge production and pushing scientific boundaries. Recent debates have implied that many early-career autism researchers are compelled to shift their areas of focus within autism research as a consequence of their work being scrutinized by the autistic and autism communities. In this Perspective, I draw on my own experience as an early-career autism researcher having recently pivoted my research focus to become more aligned with community priorities. I reflect on whether these putative shifts in research direction are, indeed, a tragedy, as has previously been suggested, or, in fact, an opportunity for autism researchers. I argue that pivoting in research is a demonstration of science adapting to the ever-evolving needs in society and changes in our understanding of neurodiversity, neurodivergence, and research methods. While disagreements between the autistic, autism, and research communities may well feel uncomfortable, these tensions also present an opportunity for us-as non-autistic autism researchers-to reflect and to act toward building trust with the community. I recommend three areas for reflections: the purpose of our research, our position of power, and the epistemic limits of our academic expertise. I end by encouraging ECRs to consider taking actions, however small, to lead the charge in improving practices in autism research.

Background: The COVID-19 pandemic resulted in large-scale public health restrictions and lockdowns across many countries. There is an increasing literature on the varied impact of such lockdowns in autistic adults. However, there is very little research on how the pandemic and related public health measures may impact the willingness of autistic people in engaging and taking part in research. The aim of this qualitative study was to explore autistic adults' experiences of the COVID-19 lockdown and how the pandemic may affect future research participation.

Methods: We conducted in-depth interviews with 31 autistic adults between March and July 2020. Transcripts were analyzed thematically within a critical realism framework.

Results: Participants identified positive aspects of lockdown such as enjoying the lack of social pressures and using their well-developed skills for dealing with uncertainty. Autistic people also shared challenges of adjusting to lockdown, for example, rapid change in daily routines. While hopeful about the freedom gained from easing restrictions, participants were concerned about the inconsistent communication and application of rules during the transition out of lockdown. This may have exacerbated already rising mental health issues among autistic people. The participants viewed research participation and engagement with increased relevance during the pandemic and welcomed efforts to conduct research using online methods of communication.

Conclusion: The COVID-19 lockdown had a varied effect in the lives and routines of autistic people. However, health care providers and researchers need to be mindful of rising mental health issues in the aftermath of the pandemic, especially for people who were already vulnerable. The response to the pandemic may have offered opportunities for innovation in research processes enabling more autistic people to engage with research and making studies more inclusive.

[This corrects the article DOI: 10.1089/aut.2023.0003.].

Background: The COVID-19 (coronavirus disease 2019) pandemic-related isolation measures caused significant unexpected changes in learning experiences for all university students, including autistic students. So far, there has been a lack of information on autistic university students' lived learning experiences caused by the changes in the teaching delivery formats from face-to-face to online during this time. Our study addressed this gap by investigating eight autistic students' reported learning experiences during the rapid changes caused by the pandemic and discussing student-advocated learning supports.

Methods: The participants in this qualitative study were eight formally or self-diagnosed, English-speaking, autistic undergraduate and graduate university students from a mid-sized Canadian university. Participants took part in semi-structured interviews that focused on their learning experiences and preferences before and during the pandemic, including what supports they found helpful. To analyze and interpret the data, autistic and nonautistic researchers used reflexive thematic analysis and a consultative participatory approach.

Results: Our findings suggest that individual (i.e., organizational skills; mental health), interactional (i.e., prior experiences interacting with instructors and teaching assistants), and environmental (i.e., sensory environments, class sizes, virtual learning environments) factors, which were interrelated, determined the nature and quality of these autistic students' learning experiences and their academic preferences during the pandemic. We also found that each autistic student reported unique learning experiences and needed individualized supports for their learning.

Conclusions: Several interrelated factors (individual, interactional, and environmental) affected the nature and quality of autistic university students' experiences during the pandemic. Each student had unique experiences and needed individualized supports.

Background: While many studies have examined where and with whom autistic people live, very few have looked at autistic people's experience of moving home. Choosing where to live, and being able to move residence, could be important for autonomy, and we therefore undertook a systematic review to identify studies about autistic adults' experience of moving home.

Methods: We entered search terms relevant to autism and moving home into six databases and Google Scholar. After screening the titles and abstracts, we identified a final set of articles and screened the full text. We then checked the reference lists for potentially relevant articles; then, we conducted a search for articles that cited our final set of articles. Three raters assessed each included article for methodological quality.

Results: The search strategy identified a total of 311 articles (initial search, ancestry searching, articles from other sources). After deduplication, we screened a total of 165 articles for eligibility. A final set of seven articles was identified. Our narrative synthesis of the articles suggests that both autistic people and the relatives of autistic people think living independently is a source of positive personal development. However, autistic people reported that poor employment prospects impacted on their financial independence and hence independent living. Parents highlighted concerns about their offspring's personal care, safety, and the difficulty of navigating the housing system for those autistic people with co-occurring intellectual disability.

Conclusions: Taken together, our review suggests that autistic people and those who care for them have a positive view of independent living and are aware of the barriers to achieving this. Our review highlights a gap in the understanding of autistic adults' experience of moving home. We briefly describe our ongoing research project [the "Moving (as an) Autistic Person" project] exploring autistic people's experiences of moving house.

Background: In recent years, there have been increasing discussions surrounding the appropriate terminology to talk about autism. Initially, this debate revolved around the use of person-first language (e.g., person with autism) versus identity-first language (IFL; e.g., autistic person) but has recently expanded to other autism-related terms (e.g., deficits). However, to date, studies investigating autism-related language preferences have been limited to English-speaking countries, and little is known about preferences in other languages. This study addresses this gap by investigating the language preferences of French-speaking autistic adults.

Methods: Five hundred and forty-one French-speaking autistic adults (formal diagnosis and self-identified) completed an online survey where they selected terms they preferred to use to talk about: (1) the nomenclature of autism; (2) an autistic person; (3) someone's autistic identity; (4) autism more broadly; (5) the abilities of autistic people; and (6) people without a diagnosis of autism. Participants also revealed more about their language preferences via an open-text response.

Results: The most preferred terms were "Autisme," "Personne autiste," "Autiste," "Est Autiste," "Différence neurologique/cérébrale," "Différences," "Difficultés," "Personne neurotypique," "Neurotypique," and "Personne non-autiste." To better understand these preferences, participants' open comments were analyzed, revealing further support for IFL and the social model of disability, and a preference for simple, precise, and validated terms.

Conclusions: These results are consistent with autism terminology preferences in English-speaking countries and provide additional insight into the reasons underlying these preferences. Such work has implications for informing the language of researchers, clinicians, and other professionals in the field, as well as the general public.

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.

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.