Autism in Adulthood

Pieslinger, Johan F. ; Igelström, Erik; Igelström, Kajsa

doi: 10.1089/aut.2024.0262pmid: N/A

Background: The social interaction styles of autistic individuals are determined by neural differences across multiple brain systems, and these are not necessarily pathological in nature or entirely specific for autism. Interventions that aim to modulate social function to simulate more neurotypical behavior can be detrimental to self-acceptance and quality of life (QoL). Therefore, this cross-sectional study aimed to test contributions of six specific social dimensions to the autistic neurotype and then use causal inference to identify which of them have adverse effects on QoL. Such autism-relevant dimensions that impact QoL may be more useful as intervention targets than more global autistic characteristics.Methods: We quantified individual differences in multiple dimensions of socially relevant functions (social anhedonia, theory of mind, affective empathy, social anxiety, prosopagnosia, and alexithymia), as well as confounding constructs, using validated questionnaires in a sample of 366 adults with a wide range of autistic traits (ATs), including 78 with diagnosed autism. We first used Bayesian linear regression to identify the most likely predictive model of social ATs. Then, we constructed a causal model with a sufficient adjustment set to estimate the differential roles of the constructs in lowering QoL.Results: We found that 76% of variance in social ATs was explained by a combination of social anhedonia, theory of mind differences, social anxiety, alexithymia, and face blindness, while individual differences in affective empathy did not contribute. However, only alexithymia and social anhedonia were found to adversely affect QoL.Conclusion: We suggest that autistic social function can be explained by variation across multiple dimensions that are more specific, neurally and behaviorally, than the broad AT construct. There were autism/AT-related differences across most tested dimensions, but QoL was disproportionately affected by alexithymia and social anhedonia, suggesting that these transdiagnostic constructs are relevant markers of poor outcomes.

Herbert, Gemma; Smith, Abbie; MacLennan, Keren

doi: 10.1177/25739581251375879pmid: N/A

Background:Up to 94% of Autistic people have sensory responsivity differences, associated with experiences that can range from being distressing to highly pleasurable. Despite the importance of live music in fostering social inclusion, many venues and events are not inclusive, creating barriers for Autistic people. Given the challenges Autistic people face in accessing live music events, our study aimed to explore their experiences to improve inclusivity, using a critical realism epistemological approach.Methods:We conducted a qualitative study with 16 Autistic adults aged 21–52 through online focus groups (n = 13), individual interviews (n = 1), and email exchanges (n = 2), allowing for spoken or typed communication. Each focus group lasted 1 hour, and we analyzed the data using reflexive thematic analysis, following good practice guidelines.Results:We developed four main themes and two subthemes: (1) “This is a military operation”—Planning to manage uncertainty and overwhelm; (2) “Hating a crowd and loving a crowd at the same time”—Social connection; (3) The duality of an intense sensory environment; (3a) “The music, the vibrations bring out the colors … in my mind”—Immersive sensory joy; (3b) “My brain is screaming at me”—Sensory overload; and (4) “I think the biggest difference, always, is the staff”—Combating stigma and creating safe spaces.Conclusions:Our study highlights the positive and negative aspects of attending live music for Autistic people, offering actionable recommendations for inclusivity. Key suggestions include providing advance information, earplugs/quiet spaces, minimizing crowd exposure, and ensuring staff are trained to support Autistic attendees. These measures can help create accessible, enjoyable live music experiences, fostering social connections and reducing isolation for Autistic people.

Wilson, Jodie; Brown, Claire M.; Hayward, Susan M.; Stokes, Mark A.; Nicholas, David; Hedley, Darren

doi: 10.1089/aut.2024.0200pmid: N/A

Background:Autistic adults have a high incidence of mental health challenges, including suicidal thoughts and behavior (STB). Our objective was to gain a nuanced understanding of autistic adults’ experiences in seeking and receiving support for their mental health, including STB, presented in a format that could be operationalized to improve service provision for autistic adults.Methods:We applied an integrated codesign approach involving autistic adults at every stage of the research, acknowledging them as experts on their own lives. Thirty-three autistic adults with a history of STB participated in semi-structured narrative interviews, discussing their experiences seeking and receiving support for their mental health. We analyzed data using reflexive thematic analysis.Results:We constructed an overarching theme, “We Don’t Know What We Don’t Know,” representing the bidirectional misunderstandings that occur between health care providers and autistic people. Within the overarching theme were four central themes: (1) Communicate with Me (understanding the uniqueness of autistic communication); (2) Understand Me (developing a nuanced understanding of autism and being autistic); (3) Help Me to Understand Myself (developing self-understanding); and (4) Support Me (empowerment when supported). We constructed an underpinning theme, “Trust and Safety,” representing the need for psychological safety in all domains of mental health care. We centered the lived experiences of autistic adults to acknowledge the need for autistic people to feel safe and for service providers to build trust to effectively support the mental health of autistic adults.Conclusions:Our analysis demonstrates the need to facilitate access to mental health care and improve the quality and effectiveness of service utilization for autistic adults. Recommendations include improving understanding of and communication with autistic people, embedding education, cultural humility, and psychological safety, acknowledging power imbalances, adapting interventions, and validating autistic experience. Our thematic map serves as a framework to inform and improve health care services for autistic people.

Burns, Taylor M.; Botha, Monique

doi: 10.1177/25739581251365476pmid: N/A

Background: Autistic people experience worse mental health outcomes than non-autistic people. Masking (concealing autistic traits) is found to relate to poor mental health. Research shows that autistic people indicate relationships between masking and difficulties creating or maintaining a sense of identity. Personal identity is rarely studied within autism research. This study aims to bridge this gap by exploring the connection between identity formation difficulties (both social and personal) and its impact on poor mental health in autistic people. It examines levels of identity conflict and distress in autistic and non-autistic people and whether identity distress mediates and identity conflict moderates the relationship between masking and psychological distress.Method: Data were collected for autistic (n = 139) and non-autistic people (n = 133) using an online survey.Results: Autistic people were found to experience higher levels of identity distress, conflict, and psychological distress. Identity distress represents a full mediation of the relationship between masking and psychological distress in the autistic cohort, but a partial mediation in the non-autistic cohort. Identity conflict did not moderate any relationships within the model for either cohort. However, it did have a significant direct relationship with masking identity distress and psychological distress.Conclusions: These findings suggest that autistic people may experience worse mental health outcomes due to difficulties with cohesive identity formation. Additional research into the role of autism in identity development may identify other areas in which identity difficulties negatively impact autistic people, such as long-term planning and suicidality.

Conde-Pumpido Zubizarreta, Sabela; Lois-Mosquera, Miguel; Tubío-Fungueiriño, María; Alemany-Navarro, María; Hull, Laura; Carracedo, Angel; Gándara-Gafo, Berta; Fernández-Prieto, Montse

doi: 10.1089/aut.2024.0003pmid: N/A

Background:Researchers have proposed that camouflaging contributes to delayed or absent diagnosis and mental health problems in autistic individuals. Therefore, there is a need for validated measures of this construct. This study aimed to culturally adapt the Camouflaging Autistic Traits Questionnaire (CAT-Q) for the Spanish population (Spain) and assess its psychometric properties, addressing the need for camouflage assessment tools in Spain.Methods:We conducted a cultural adaptation process, which involved direct-back translation and pretest with autistic individuals. We tested internal consistency, test–retest reliability, construct validity, including structural validity (confirmatory factor analysis), measure invariance, and hypothesis testing for construct validity with a larger sample of 490 participants, including 379 non-autistic individuals and 111 autistic individuals. We assessed a subsample of 32 non-autistic participants for test–retest reliability.Results:The cultural adaptation process yielded the CAT-Q–Spanish version (ES), culturally adapted for the Spanish population. Autistic volunteers identified minor comprehension issues in three items and the researchers revised them. The CAT-Q-ES showed excellent internal consistency among non-autistic (McDonald’s omega [ω] = 0.95) and autistic individuals (ω = 0.89). The subscales (Compensation, Masking, Assimilation) demonstrated internal consistencies ranging from adequate to excellent. Test–retest reliability showed a strong relationship (r = 0.99, p < 0.001). Associations between CAT-Q-ES scores and related constructs, including autistic traits, and symptoms of anxiety and depression confirmed its validity, with autistic individuals scoring higher on the test.Conclusion:The CAT-Q-ES is conceptually and semantically equivalent to the original instrument, offering a valid and reliable measure of camouflage for Spanish adults. These findings enhance the assessment and understanding of camouflage within the Spanish context, addressing a crucial gap in the field.

Thom-Jones, Sandra; Brownlow, Charlotte; Abel, Susan

doi: 10.1177/25739581251385735pmid: N/A

Background: Research into the experiences of autistic parents is limited, with the majority of existing studies focusing on pregnancy, childbirth, and raising infants. We sought to capture the experiences of autistic parents across the journey from pregnancy to parenting adult children.Methods: We conducted semistructured online interviews with 92 autistic parents across all stages of the parenting journey. Participants were invited to share their reflections on the challenges and strengths of parenting as an autistic person. Data were analyzed using qualitative content analysis, combining deductive and inductive coding.Results: Challenges external to the parent–child relationship were most frequently coded in the categories of “support” and “discrimination/stigma.” Challenges internal to the parent–child relationship were most frequently in the categories of “self-child balance” and “parental well-being.” When exploring parenting strengths, the most frequently coded categories were “empathy and understanding” and “parental joy.” Across all three focus areas, the majority of the most frequently occurring codes arose from the inductive coding and were not represented in the existing literature.Conclusion: The most significant challenges external to the parent–child relationship were lack of access to appropriate supports and provision of inappropriate supports, along with discrimination from professionals and service providers. The most commonly coded internal challenge was feelings of not being good enough or failing as a parent, likely reflecting the negative judgments experienced by many autistic people. Participants reported experiencing great joy in their parenting experience, and evidenced a range of strengths, including egalitarian parenting, open and honest communication, and insight and understanding.

Khaw, Jessica; Vernon, Ty

doi: 10.1089/aut.2024.0124pmid: N/A

Background:Autistic individuals report high levels of interest in pursuing and maintaining romantic relationships but indicate fewer and less satisfying relationships when compared with non-autistic populations. In this mixed-methods study, we investigated the self-identified factors that contribute to successful romantic relationships for autistic adults with the additional goal of understanding if and how their partners’ neurotypes may influence relationship satisfaction.Methods:We compared levels of relationship satisfaction among 106 autistic individuals by categorizing each participant into one of three groups based on the specific neurotype of their partner: (1) autistic/autistic (A/A) dyads; (2) autistic/neurotypical (A/NT) dyads; and (3) autistic/non-autistic but neurodivergent (A/ND) dyads. All participants completed a series of online surveys to gather information about their autistic traits, overall relationship satisfaction, reciprocal communication and support, and perceived impact of autism on relationships.Results:Across the three dyads, participants reported similar levels of relationship satisfaction, and we found no statistically significant differences when comparing the mean satisfaction of each sample group. Participants indicated a wide variety of positive and negative relational aspects, with a few themes changing in frequency based on partner neurotype. Participants with autistic partners tended to focus on an inherent and deep sense of understanding when discussing the positive aspects of their relationships, while those with non-autistic partners were more likely to discuss the presence of mutual support and accommodation. In addition to some differences in reported themes, participants tended to report that their autistic traits positively impacted satisfaction in A/A dyads, while those in A/NT and A/ND dyads tended to report that their autistic traits posed challenges in their relationships.Conclusions:The results of this study indicate that the neurotype of an autistic individual’s partner may influence some of the reported positive and challenging aspects of their relationships. However, survey results indicate that autistic populations generally find comparable levels of satisfaction in romantic relationships irrespective of neurotype, which suggests that while partner neurotype may shape the enabling and barring factors for relationship success, it does not directly affect the overall health of a relationship. Finally, how an autistic individual perceives the impact of autism on their relationship may be affected by the neurotype of their partner.

Ames, Jennifer L.; Anderson, Meredith; Cronbach, Emily; Gassner, Dena L.; Greenberg, Mara; Lee, Catherine; Giwa Onaiwu, Morénike; Croen, Lisa A.

doi: 10.1089/aut.2024.0323pmid: N/A

Background: Early evidence suggests that autistic individuals face unique challenges around pregnancy health, including increased risks of perinatal depression and pregnancy complications such as preterm birth. We aimed to compare pregnancy health and obstetric care utilization among autistic individuals, those with other developmental disabilities (DDs), and those from the general population (GP) in the United States.Methods: In Kaiser Permanente Northern California, we identified all pregnancies that occurred between January 1997 and July 2024 among members with a clinician-documented autism diagnosis (n = 431) or other DD (n = 3893). From electronic health records, we extracted data on diagnoses during pregnancy and postpartum, birth outcomes, and obstetric care utilization. We matched pregnancies among the GP 100:1 (n = 43,100) on birth year and singleton/multiple status to the autistic group. We used adjusted logistic regression to compare outcomes and utilization between the three groups.Results: Compared with the GP, the autistic and DD groups had higher rates of hyperemesis gravidarum (6.1% and 3.3% vs. 1.9%), prenatal depression (52.8% and 27.7% vs. 15.6%), and preterm birth (11.2% and 14.2% vs. 7.5%). Additionally, the autistic group had a higher rate of therapeutic abortion, whereas the DD group had higher rates of pregnancy-related hypertensive disorders than the GP. We did not see disparities in the use of standard prenatal care. However, both the autistic and other DD groups were more likely than the GP to visit the emergency department during pregnancy and postpartum and deliver via cesarean section. Furthermore, the DD group was less likely than the GP to have a postpartum visit.Conclusions: These findings emphasize the importance of addressing the unique obstetric needs of individuals with autism and other DDs, including facilitating access to family planning services, enhancing the quality of prenatal and postpartum care, and providing adequate perinatal mental health support.

Curnow, Eleanor; Maciver, Donald; Johnston, Lorna; Murray, Mairead; Johnstone-Cooke, Victoria; Utley, Izy; Jenkins, Natalie; Meff, Tamsin; Muggleton, Joshua; Rutherford, Marion

doi: 10.1089/aut.2024.0168pmid: N/A

Background:This study aimed to explore the experiences of autistic professionals working in the public sector in Scotland and investigate the factors that supported them in achieving employment in their chosen career.Methods:We interviewed 34 autistic adults employed in professional roles in the health and education sectors in Scotland about their successes and challenges during training, recruitment, and employment. Interview conversations of 60–90-minute duration were transcribed verbatim. The research team, which included autistic and non-autistic researchers, conducted inductive thematic analysis.Results:Resultant themes included complexity of disclosure; navigating differences in social communication and across employment stages; and control of the environment. Autistic professionals face inequalities and unsupportive environments. Participants described multifaceted decision-making processes behind choices to disclose or withhold their autism diagnosis, which could determine their right to workplace accommodations or provoke unfavorable treatment. The styles of communication preferred by colleagues could engender misunderstanding and lead to challenges negotiating social situations, recruitment processes, and organizational culture. Participants’ needs and preferences for predictability and routine required them to use strategies to overcome the negative impacts of suboptimal social and physical environments.Conclusion:Findings confirm the importance of acceptance and inclusion and demonstrate that there is a need for culture change within public sector education and health workplaces to improve accessibility. Applying minor changes to the environment and individual communication styles can enhance workplace conditions for autistic employees.

Paris, Katie; Lodestone, Alexandru “Zeph”; Houser, Melissa; Lewis, Laura Foran

doi: 10.1089/aut.2024.0193pmid: N/A

Background:Autistic adults commonly experience shutdowns, which are distressing events widely discussed within Autistic communities. Yet, few studies to date have explored firsthand accounts of shutdown experiences. In this study, we aimed to identify figurative language that Autistic adults use to describe shutdowns, thereby broadening the understanding of and providing language for this complex phenomenon.Methods:We used a participatory research approach to conduct a secondary analysis of qualitative data from two prior studies on shutdowns in Autistic adults. Primary studies used asynchronous interviews and a survey, with a total sample size of 86 participants. We analyzed a corpus of 87 typed pages using the Pragglejaz Group’s metaphor identification procedure to identify figurative language that Autistic adults used to describe shutdowns.Results:Autistic adults in this sample used six metaphors to explain shutdowns, including the following: being frozen, a computer crash, going inside myself, when I can’t keep up, survival mode, and playing a role.Discussion:These metaphors help to externalize the internal experience of shutdowns. Participants described shutdowns as a state of being stuck, often involving physical and/or vocal immobilization. They frequently described shutdowns as a response to perceived threats, connecting them to a sense of survival and self-protection. Metaphors provide a rich context for understanding and talking about shutdowns. Findings also highlight how Autistic adults organically construct metaphors to articulate their experiences. Future studies could use metaphor analysis to explore other affective experiences of Autistic individuals.