1. Nayyar JM, Stapleton AV, Guerin S, O’Connor C. Exploring Lived Experiences of Receiving a Diagnosis of Autism in Adulthood: A Systematic Review. Autism in Adulthood. 2024; 7(1): 1-12.

Background: Growing numbers of adults are seeking and receiving autism diagnoses. This systematic review collates, evaluates, and synthesizes evidence on the lived experiences of receiving a diagnosis of autism in adulthood. Methods: A keyword-search was performed on six databases, with results systematically screened to identify relevant studies. Data extracted from the studies were analyzed using thematic synthesis. Results: Initial searches produced 12,785 articles, 26 of which were included and subjected to thematic synthesis. We identified two meta-themes: Constantly Struggling, related to (1) events that prompted diagnosis, (2) struggling to get a diagnosis, (3) haphazard supports, (4) costs of a late diagnosis, and (5) stigma; and Revelation, involving (1) emotional reactions to diagnosis, and (2) forging an autistic identity. Discussion: While diagnosis can grant understanding, acceptance, and community, autistic adults continue to struggle with stigma, regret, and inadequate support post-diagnosis. Understanding the first-person perspectives of those who have acquired an autism diagnosis in adulthood is vital in developing sensitive and effective assessment and support services for adults.

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2. Beresford B, Mukherjee S. Incorporating Psychoeducational Care in the Autism Diagnosis Pathway: Experiences, Views, and Recommendations of UK Autistic Adults and Autism Professionals. Autism in Adulthood. 2024; 7(1): 13-24.

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.

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3. Camilleri LJ, Maras K, Brosnan M. Self-Set Goals: Autistic Adults Facilitating Their Self-Determination Through Digitally Mediated Social Stories. Autism in Adulthood. 2024; 7(1): 25-38.

Background: Personalized and practical support can facilitate autistic adults’ independence and agency and can enable enhanced self-determination while influencing quality of life. Notwithstanding, traditional supports or interventions for autistic adults typically seek to address perceived challenges associated with autism, rather than identify what the autistic person wants support with. In this research, we explored the potential to empower autistic people by attaining their own self-set goals with the support of digitally mediated Social Stories. Methods: We conducted a pre/post quasiexperimental design to investigate the usefulness and effectiveness of digitally mediated Social Stories for autistic adults to support the attainment of their self-set goals. Thirty-three autistic participants self-set goals and self-developed Social Stories using a digital application. We collected closeness-to-goal measures at baseline and after 2 weeks of reading their digitally mediated Social Stories themselves and we compared them with a control condition. We then evaluated the goals participants were interested in. The autistic adults also evaluated the usefulness of the intervention for them. Results: Over 2 weeks, the use of self-set goals, combined with a digitally mediated Social Story, elicited a statistically significant increase in closeness-to-goal ratings with a large effect size. The majority of participants reported that digitally mediated Social Stories were an appropriate and effective form of self-support. Our analysis of the participants’ goals indicated that autistic adults predominantly identified a need for support with increasing nonsocial behaviors. Conclusion: Self-developed digitally mediated Social Stories can effectively support autistic adults in reaching their self-set goals. Digitally mediated Social Stories can support reflection on one’s goals, increase commitment toward goals, break down tasks into meaningful parts, as well as create meaningful predictions for autistic adults. Thus, digitally mediated Social Stories have the potential to empower autistic adults to self-support reaching self-set goals.

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4. VanDaalen RA, Dillon FR, Santos CE, Capielo Rosario C. Development and Initial Validation of the Autism and Neurodiversity Attitudes Scale. Autism in Adulthood. 2024; 7(1): 39-51.

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.

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5. Tamura M, Cage E, Perry E, Hongo M, Takahashi T, Seto M, Shimizu E, Oshima F. Understanding Camouflaging, Stigma, and Mental Health for Autistic People in Japan. Autism in Adulthood. 2024; 7(1): 52-65.

Background: Camouflaging refers to behaviors in which autistic individuals mask their autistic characteristics and ?pass? as non-autistic people. It is postulated that camouflaging is a response to stigma, and preliminary evidence supports this hypothesis. However, research on this topic outside of Western countries is limited. This study replicated and extended previous work in the West that examined the relationships between camouflaging, stigma, and mental health of autistic adults, with a Japanese sample. Methods: Two-hundred eighty-seven autistic people living in Japan (146 men, 120 women, 14 nonbinary, 5 other gender identities, 2 preferred not to say; mean age?=?37.5 years, standard deviation?=?9.8 years) completed an online survey on camouflaging, perceived stigma, coping strategies for stigma, mental well-being, generalized anxiety, social anxiety, and depression. We used hierarchical multiple regression analyses to investigate the relationships between camouflaging and stigma and coping strategies for stigma. Mediation analyses were also employed to examine whether camouflaging mediated the relationships between stigma and autistic people’s mental health. Results: Replicating previous work, we found that higher camouflaging was associated with higher perceived stigma. Both coping strategies of hiding/denying and valuing/embracing stigmatized characteristics were positively related to camouflaging. Camouflaging mediated the association of stigma with depression, generalized anxiety, and social anxiety (but not well-being). Conclusions: Our findings support the hypothesis that camouflaging is closely related to autism-related stigma and can influence the impact of stigma on mental health. More work around social outreach and addressing autism-related stigma would be beneficial to reduce the negative role of camouflaging.

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6. Adams N, Jacobsen K, Li L, Francino M, Rutherford L, Tei C, Scheim A, Bauer G. Health and Health Care Access of Autistic Transgender and Nonbinary People in Canada: A Cross-Sectional Study. Autism in Adulthood. 2024; 7(1): 66-80.

Background: The existence and health care needs of individuals who are both autistic and transgender and nonbinary (TNB) are increasingly discussed publicly. While research demonstrating a greater prevalence of autism among TNB individuals continues to grow, little captures their experiences with primary, mental health, and gender-affirming care (GAC), particularly between self-identified and diagnosed autistic TNB individuals. This article explores this nexus. Methods: We conducted a subgroup analysis of the Trans PULSE Canada 2019 national survey (n?=?2873). We included both individuals who self-reported a diagnosis of autism (n?=?230) and those who self-identify as autistic without one (n?=?176). We compared participant demographics, health status, and health care experiences by autistic status (diagnosed, self-identified only, or allistic [non-autistic]) using weighted chi-square tests and logistic regression analyses. Results: Of Trans PULSE participants, 14.3% were autistic (8.1% diagnosed, 6.2% self-identified). Compared with their allistic peers, autistic participants were younger, had lower levels of education, employment, and income, and were more likely to identify as asexual. They also reported worse overall general health, a higher rate of unmet health care needs, and significant mental health disparities. While few diagnosed (3.7%) or self-identified (1.1%) autistic participants reported being directly denied GAC due to autism, 25.5% of diagnosed and 36.1% of self-identified individuals preemptively avoided sharing information about it during GAC readiness assessments in the past year. Conclusions: Our findings highlight the need for changes to treatment of autistic TNB people in primary and mental health care. Future research should explore both individual responses and systematic changes to these challenges.

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7. Wu C-S, Tsai H-J, Chien Y-L, Gau SS-F. All-Cause Mortality and Specific Causes of Death in Autism: A Nationwide Analysis. Autism in Adulthood. 2024; 7(1): 81-92.

Background: Western studies have reported a higher mortality risk in autistic individuals. However, the specific causes of death and the roles of age, sex, and concurrent intellectual disability (ID) remain unclear. This study aimed to analyze the causes of death in autism and the moderating effects of age, sex, and concurrent ID. Methods: This nationwide population-based study, conducted between 2008 and 2019, identified 64,685 autistic individuals and were age and sex matched with 1,279,174 nonautistic controls. All-cause mortality and specific causes of death were compared between autistic and nonautistic controls. The modifying effects of age, sex, and concurrent ID were also examined. Results: The risk of all-cause mortality (hazard ratio?=?2.28) is higher in autistic individuals than in nonautistic controls. The elevated all-cause mortality in autistic individuals was consistent across sex, age, and the presence or absence of ID and was higher in autistic women, adults, and those with concurrent ID than in their counterparts. The mortality risks for most examined specific causes, except cancer, are higher in the autistic group than those in nonautistic controls. Although autistic individuals with concurrent ID showed higher mortality risks in neurological, respiratory, and gastrointestinal categories and accidents, the risk of suicide is lower. Autistic women had higher mortality risks in most categories, whereas autistic adults had a higher mortality risk in the neurological and respiratory categories. Conclusion: Autistic individuals face higher mortality risks across various disease categories, regardless of sex, age, or concurrent ID. Health care policies should prioritize the implementation of specific strategies for the early detection of diseases and health promotion, as well as accident and suicide prevention among autistic women and those without ID. Clinical Trial Registration number: NCT04010422.

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8. Allen AM, Burk JA, Dickter CL. The Effect of Labeling During Simulated Contact on Attitudes Toward Autistic Adults. Autism in Adulthood. 2024; 7(1): 93-9.

Background: Autistic adults are perceived more negatively than neurotypical (NT) adults by NT individuals. These negative perceptions can contribute to discrimination toward and social exclusion of autistic adults, which is detrimental to their mental and physical well-being. This study examined whether reading a vignette and imagining an interaction with a peer labeled as autistic would improve implicit and explicit attitudes toward autistic people. Methods: NT adults (n?=?120) read a vignette and were asked to imagine an interaction with an unfamiliar person who was either labeled as autistic or not and displayed perseverative behavior, limited eye contact, or no described behavior. Results: Overall, participants associated autistic terms with negative attributes rather than positive attributes, but those who imagined interacting with an individual labeled as autistic had less negative implicit bias toward autistic people than those who imagined interacting with a person without a label of autism. Explicit bias was not affected by the simulated scenario. When assessing some of the factors that are associated with implicit and explicit attitudes, we found that implicit attitudes and prior contact with autistic individuals were significantly related while controlling for Societal Attitudes towards Autism (SATA), while explicit attitudes were associated with SATA controlling for prior contact. Discussion: These findings suggest that a brief exercise in which participants imagine a positive encounter with a person labeled as autistic can reduce implicit bias toward autistic people.

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9. Long R-EM. Access Points: Understanding Special Interests Through Autistic Narratives. Autism in Adulthood. 2024; 7(1): 100-11.

Background: Although autistic people have shared how important their interests can be, sometimes using the phrase ?special interests,? autistic interests are commonly pathologized. Research has begun to recognize the benefits of special interests for autistic people. These benefits are often investigated primarily in childhood and in relation to neuronormative aims. In addition, existing research leaves the definition of ?special interests? unquestioned. This study adds to the literature by examining not only what autistic adults mean by ?special interests,? but how they explain why these interests matter. Methods: The researcher interviewed 15 adult autistic advocates in the United States about their ?special interests? to understand what this term meant to them based on their own life experiences. Through critical qualitative analysis of interview transcripts, including iterative inductive-deductive coding, hierarchical code organization, and positional mapping, the researcher looked for similarities and differences in how participants conceptualized special interests. Results: Participants used three different narrative strategies to describe special interests and their importance: explaining the amount of time spent on the interest, discussing how they experience the interest, and comparing special interests with other types of interests. Autistic people said that their interests mattered to them personally, as well as helped them communicate and connect with others. Participants also shared that it was important for non-autistic people to know about why special interests matter to autistic people and create a more accepting society. Conclusions: The concept of ?special interests? meant different things to the autistic people in this study. Even so, participants saw special interests as generally important and an aspect of their lives that should be societally supported. The narratives of special interests collected in this project challenge stereotypes of autistic people as disconnected and asocial. Instead, this study demonstrated how special interests take on increased individual and societal importance for autistic people.

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10. Hand BN, Gilmore D, DeVassie H, Longo A, Juckett L, Hanks C, Havercamp SM, Coury D. Development of PREPARE for Autistic Adults: An Adult Autism Training for Resident Physicians Designed with Autistic Adults and Family Members. Autism in Adulthood. 2024; 7(1): 112-20.

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.

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