Autism in adulthood : challenges and management最新文献

Informed, voluntary, ongoing consent is a central tenet of ethical research. However, consent processes are prone to exclusionary practices and inaccessibility. Consent materials are often too long and complex to foster understanding and ensure that people make truly informed decisions to participate in research. While this complexity is problematic for all people, these challenges are compounded for autistic people and people with intellectual disability. Consent materials and procedures rarely incorporate accommodations for processing and communication differences common in autism and intellectual disability. Failure to provide such accommodations ultimately threatens the conduct of ethical research. We describe lessons learned across multiple major U.S. research institutions that improved informed consent materials and procedures, with the goal of fostering responsible inclusion in research for autistic people and people with intellectual disability. We used these alternative materials and procedures in multiple research projects with samples of autistic people and people with intellectual disability. Each contributing team partnered with university human research participant protections personnel, accessibility experts, community members, and researchers to develop rigorous procedures for improving the readability and accessibility of informed consent materials. We present guidelines for designing consent materials and procedures and assert that participatory methods are vital to the success of ongoing accessibility initiatives. Adoption of understandable consent materials and accessible consent procedures can cultivate more equitable, respectful, and inclusive human research practices. Future work should expand on this work to design inclusive practices for populations with additional considerations.

Background: Drawn from aspects of the autistic self-advocacy movement, the neurodiversity movement is a conceptual framework and sociopolitical movement that views neurological differences and disabilities (e.g., autism) as natural human variations that can form a central component of one's identity. This study presents the development and validation of a scale to assess endorsement of neurodiversity beliefs with respect to autism among both autistic and nonautistic adults.

Methods: Diverse samples of adults were utilized to conduct exploratory (N = 249) and confirmatory (N = 259) factor analyses, resulting in a 17-item second-order three-factor model that demonstrated adequate evidence of reliability and validity.

Results: The three factors consisted of Autism Anti-Stigma, Autism Permanence, and Autism as Difference. Additional analyses of measurement validity revealed that endorsement of the neurodiversity framework is positively correlated with sociopolitical engagement, and that endorsement of the neurodiversity framework is negatively correlated with negative attitudes toward people with disabilities. Self-identified autistic adults endorsed the neurodiversity framework to a greater extent than nonautistic adults.

Conclusion: The validity results are congruent with the historical roots of the neurodiversity movement and the attitudes endorsed by many autistic adults. Given the factor structure and reliability results, researchers can use this scale to assess neurodiversity-affirming attitudes as a unitary construct or can use the anti-stigma subscale to assess stigma-related attitudes toward autism. This scale has utility for researchers that seek to understand and promote well-being in autistic adults, as well as research related to potential support systems in the lives of autistic adults. It can also be used to increase self-understanding among autistic individuals and allies, as this scale can be used for both autistic and nonautistic adults.

One barrier to meeting autistic adults' health care needs is the dearth of physicians with autism training. We developed an adult autism training for residents, who are postdoctoral physicians training to become specialists, in internal medicine or family medicine. We used formative evaluation to design the training with autistic adults and family members of autistic adults, who were paid consultants. The training includes six prerecorded presentations, six case studies, and two standardized patient scenarios. We conducted focus groups and interviews with 23 residents and 14 faculty who educate residents. We described the curriculum, reviewed the content in one module, and obtained feedback on maximizing feasibility and scalability. Using semantic-level inductive rapid qualitative analysis we identified three themes and two subthemes. First, "flexibility is key" described ways to increase flexibility to accommodate resident and faculty schedules across programs. Second, "time is the most valuable asset" described the need to minimize duration and maximize impact. Third, "buy-in is necessary" described ways to increase buy-in from residents and residency leadership. Two subthemes, "we don't talk much about neurodivergence" and "this content applies to all patients," describe how to increase buy-in by highlighting how this training fills a gap in resident education and can be generalized to multiple populations. Results highlighted ways to modify our training to maximize implementability across different residency programs. Next steps include pilot testing of feasibility, acceptability and effects on resident self-efficacy, attitudes/beliefs, and knowledge. In the long term, we expect this will yield more adult care physicians prepared to meet autistic adults' needs.

Background: When someone receives a diagnosis they may need support with information and emotional needs. These are called psychoeducational needs. For adults diagnosed with autism, these can include needing to understand and make sense of the diagnosis and finding self-management strategies that work for them. When autistic adults do not receive the psychoeducational support they need their mental health and self-confidence in managing everyday life is affected. However, many diagnostic services do not provide psychoeducational care. In this study, we investigated autistic adults' and autism specialist staff's views on the psychoeducational care that diagnostic services should provide.

Methods: We recruited 26 autistic adults and 30 staff working in 8 UK autism services commissioned to provide both diagnostic assessments and post-diagnostic care. The staff sample included five autistic adults employed as "experts by experience" to co-deliver psychoeducational support. We used group discussions (or, where required, 1:1 interviews) to explore their views and experiences.

Results: Study participants believed psychoeducational needs arose during the assessment process (e.g., possible emotional reactions to diagnosis), and when the diagnosis is divulged (e.g., managing disclosure) as well as during the weeks and months following diagnosis. In this period, study participants agreed that the psychoeducational care offered by diagnostic services should include a debrief appointment, psychoeducation program, and the provision of "curated" information. That is, information resources carefully selected by staff and in multiple formats (e.g., text-based, videos). Study participants believed autism professionals and "experts by experience" had distinct contributions to make in meeting psychoeducational needs.

Conclusion: Findings support the case for diagnostic services to have the resources to address psychoeducational needs across the diagnostic pathway, including the offer of a debrief appointment and group-delivered psychoeducational program (with the option for 1:1 delivery) post-diagnosis. "Experts by experience" should be integral to the development and delivery of psychoeducational care.

Background: Better identification of autistic people and increased life expectancy for people with intellectual and developmental disabilities have given rise to an urgent need to better understand end-of-life care in autistic people. We compared hospice utilization of autistic older adults to non-autistic older adults and examined if known inequities in hospice utilization among the general population are exacerbated among autistic older adults.

Methods: We analyzed hospice claims from Medicare, which insures Americans over 65 years and covers hospice costs. Our sample included 5,468 autistic older adults and 10,934 matched population comparison older adults who died during 2013-2021. We used multivariable logistic regression to compare these groups on the odds of any, early, intermediate, and late hospice utilization. We defined early hospice utilization as at least 28 days before death, intermediate as 4-27 days before death, and late as within 3 days of death. Interaction terms were used to assess whether effects were modified by beneficiary's sex, race, or rurality. In a sensitivity analysis, we repeated our analyses in unmatched samples.

Results: The autistic older adult and matched population comparison groups had similar odds of any hospice utilization (OR: 1.05; 95% CI: 0.98-1.13), early (OR: 1.01; 95% CI: 0.91-1.11), intermediate (OR: 1.03; 95% CI: 0.95-1.13), and late hospice (OR: 1.07; 95% CI: 0.96-1.19). In our models evaluating the impact of other known inequities, we did not find significant interactions between autism diagnostic status and sex, race, or rurality. Results were similar in the unmatched samples.

Conclusion: Given the body of literature documenting health disparities in autistic people, our findings are heartening, suggesting Medicare-enrolled autistic older adults experience similar receipt and timing of hospice as non-autistic peers. Our findings highlight the potential power of health policies that provide zero cost, universal benefits to Americans in reducing healthcare utilization disparities among autistic people.

Background: Controversy regarding the neurodiversity movement (NDM), the social and medical models of disability, autism intervention goals, and causal attributions of disability contributes to divides in the autistic and autism communities. The present study investigates the views of autistic and non-autistic autistic and autism community members on these topics. We explored whether these views are shaped by having close relationships to autistic people with intellectual disabilities (ID) and nonspeaking autistic (NSA) people.

Methods: A total of 504 autistic and autism community members (278 autistic, 226 non-autistic) completed an online survey about theoretical models and intervention goals. Participants reported whether they had one or more close relationships with NSA people, autistic people with ID, neither, or both.

Results: Overall, there was considerable consensus regarding desired intervention goals: normalization goals were generally opposed, while participants generally supported well-being, societal reform, supportive environment, and adaptive skill goals. While autistic participants reported less support for normalization and adaptive skills goals than non-autistic participants, they expressed somewhat more enthusiasm for societal reform and supportive environments than non-autistic people. Autistic people supported the NDM more and the medical model less than non-autistic people. Those close to autistic people with ID gave higher ratings to adaptive skill goals. On average, participants not close to autistic people with ID saw the challenges of those without ID as being slightly more due to environmental/social factors than the challenges of those with ID; there was no such statistical difference among those close to autistic people with ID.

Conclusion: Further research investigating community views, with the inclusion of more autistic people with ID and NSA people themselves, is needed, but the results of this study suggest that the broader autistic and autism communities see NDM-consistent intervention goals as appropriate for all autistic people, including NSA people and those with ID. As autism interventions have often pursued unpopular normalization goals, this suggests directions for reform.

Background: Emotion dysregulation is associated with mental health challenges and suicidality in autistic adults. Little is known about how emotion dysregulation manifests in adulthood and whether current services adequately support their needs. We explored autistic adults' experiences of emotion dysregulation and identified key contributors to emotion dysregulation to inform future service development.

Methods: We performed qualitative semi-structured interviews with autistic adults, in which they shared emotion dysregulation stories. Three researchers developed the codebook using a consensus approach, coded interviews, and completed thematic analyses. Autistic adults were part of our study team and involved at every step.

Results: Fifteen autistic adults participated in the interviews. Emotion dysregulation was described in the context of a pervasive lack of control in various settings, most often experienced in health care settings. Limited awareness of internal states (i.e., emotions, sensory) until it was too late was a prominent theme. Many participants described emotion dysregulation as indistinguishable from sensory overload. Interpersonal conflict, largely social rejection because of being misunderstood by a neurotypical person, contributed to difficulty regulating emotions and low perception of self-worth. Participants described feeling powerless in health care settings and workplaces, where they experienced disproportionate and inappropriate responses to their emotion dysregulation, including involuntary sedation, termination of care, and job loss. Most participants described a lack of safety and supports for adaptively coping with emotion dysregulation, leading to tension between the personal costs of masking and the societal consequences of not masking.

Conclusions: Autistic adults attributed their emotion dysregulation to a lack of control across all contexts. It is important for autistic adults to develop emotion regulation skills, but more work is needed to understand and remediate the impact of social marginalization on autistic adults, as this directly contributed to instances of dysregulation.

[This corrects the article DOI: 10.1089/aut.2021.0099.].