A Good Night’s Sleep: Learning About Sleep From Autistic Adolescents’ Personal Accounts

Introduction: Autistic people often encounter barriers to social connectedness, leading to feelings of loneliness and isolation. Tabletop role play games (TTRPG) groups have shown potential as a neurodiversity-affirming way to enhance the social connectedness of autistic adolescents and young adults. TTRPGs involve interactive collaborative storytelling through player constructed characters, often with involvement of a Game Master, and include games such as Dungeons and Dragons. Our study aimed to explore the experiences of autistic adolescents and young adults participating in socially led TTRPG groups. Method: We employed a qualitative phenomenological design. Thirteen participants (10 males, 1 female, 2 non-binary/diverse gender) with ages ranging between 14 and 29 years from Australia took part in semi-structured interviews, which we analyzed using thematic analysis. Results: We identified four key themes. Theme 1: Safe space that encouraged happiness, self-expression, and escapism; explored how TTRPGs created a safe environment that encouraged participants to unmask and express themselves through escapism and creativity. Theme 2: Learning to manage group dynamics and resolve conflict; included how TTRPGs provided opportunities to learn through conflict. Theme 3: Connection and belonging through friendships; described how social confidence was facilitated through a sense of belonging in TTRPGs. Theme 4: Personal growth and learning; explored how TTRPGs facilitated development of social and emotional awareness, cognitive flexibility, and problem-solving abilities. Conclusion: Socially-led TTRPG supported autistic adolescents and young adults to explore their authentic selves, feel more socially connected and happier, develop genuine and long-lasting friendships, social confidence, and cognitive skills. Participants experienced conflict in TTRPG groups but described that this enabled development of conflict resolution skills. It is important to note that no therapists were involved in these groups. Future research could explore TTRPGs with mixed neurotype participants to further understand the roles of shared interests in communication between mixed neurotype participants. Community Brief Why is this an important issue? Autistic people are more likely to feel lonely due to negative social experiences and feelings of being excluded. This can lead to difficulties with mental and physical health, including masking, depression, anxiety, burnout, and suicidality. Tabletop role play games (TTRPGs) are games in which a group of people work together to create and experience a story, often guided by a Game Master. The most well-known TTRPG is Dungeons and Dragons. Each player can decide on their unique character. TTRPGs may help autistic teenagers and young adults feel less lonely and more connected. What was the purpose of this study? We wanted to understand how TTRPGs led by people in the community may impact the loneliness and friendships of autistic teenagers and young adults. What did the researchers do? We interviewed 13 autistic adolescents and young adults aged between 14 and 29 years who lived in Australia and had a range of TTRPG experiences. They participated mainly in socially-led TTRPGs, which had no therapists involved. We developed interview questions with input from an autistic advisor. The interview questions asked about positive and negative experiences of TTRPGs. We then found the common themes that autistic young people talked about. What were the results and conclusions of the study? The autistic people in our study said that TTRPG groups created safe spaces where they could connect with others without masking, due to being able to explore through their characters. TTRPGs brought mainly positive experiences, with long-term friendships being formed or consolidated. Autistic young people felt more socially confident, more flexible, and learnt life skills that helped outside of the TTRPGs. Most people said they experienced hard times in TTRPGs; however, these situations helped them to learn how to manage conflict, negative experiences and emotions. These findings suggest that TTRPGs can be a neurodiversity-affirming, strengths-based way to help autistic adolescents and young adults feel more connected and to develop friendships. What is new or controversial about these findings? Most research in the past has focused on how therapists can develop the social skills of autistic people. Our study found that social confidence, friendships, and connections can be developed through being in safe spaces related to the person’s interests that allow personal growth and exploration, without therapists present. What are the potential weaknesses in the study? We interviewed people in Australia and mostly male participants. Therefore, our study may not reflect the thoughts of everyone, particularly related to masking, which is more common in autistic females. How will these findings help autistic adults now or in the future? These findings suggest that autistic people can enhance their happiness and unmask by engaging in a socially led interest-based group, such as TTRPGs. Autistic adults may feel empowered to know that by finding a safe space with a group of people who have similar interests, they can develop strong friendships and life skills that can be helpful in other areas of their life.

Quality of life (QoL) is a core outcome of occupational therapy, but it is decreased among autistic adolescents and adults. This is the first review of QoL from an occupational therapy standpoint. To identify self-reported QoL differences between autistic and nonautistic samples; investigate sex differences in QoL among autistic people; examine consistency in QoL among autistic people across age, intellectual disability (ID), and self- versus proxy-report method; and appraise occupational therapy-related interventions addressing QoL among autistic people. Articles published in peer-reviewed journals between 2010 and 2020, located through Academic Search Ultimate, PubMed, and OTseeker, along with the American Journal of Occupational Therapy, British Journal of Occupational Therapy, Canadian Journal of Occupational Therapy, and Australian Occupational Therapy Journal. Study Selection and Data Collection: Article samples consisted of at least 20% autistic females and used self-reported QoL measures. Qualitative research was excluded, as well as studies with participants younger than age 13 yr. Twenty-seven articles qualified (3 Level 1B, 13 Level 3B, and 11 Level 4). Autistic adolescents and adults demonstrated decreased self-reported QoL compared with nonautistic peers across age and ID presence. One article compared sex differences in QoL among autistic people. Interventions improved QoL among autistic people. Autistic adolescents and adults demonstrate decreased QoL in comparison with nonautistic peers. Questions remain related to sex differences in QoL among autistic people, an area for future research. Multiple evidence-based approaches to improve QoL in the autistic population are relevant to occupational therapy practice. What This Article Adds: Self-reported QoL among autistic adolescents and adults is clearly lower than among their nonautistic counterparts. This article provides information on multiple interventions related to occupational therapy to improve QoL among autistic people.

Autistic adolescents and young adults face barriers to accessing health care, particularly during the pediatric-to-adult care transition. This study compared health care access, utilization, and provider interactions between rural and urban autistic adolescents and young adults. Autistic adolescents and young adults (N = 180) aged 14-25 were recruited through autism registries and community agencies across multiple US states from October 2022 to June 2023. They completed the Health Care Transition Experience Survey, a 51-item questionnaire evaluating health care experiences. Rural-urban differences were analyzed through descriptive and inferential statistics. Rural autistic adolescents and young adults (n = 84) relied more on a single health care location, while urban autistic adolescents and young adults (n = 96) more often used multiple providers (72.6% vs 56.3%, p = 0.046). Rural autistic adolescents and young adults reported greater challenges with providers lacking autism-specific knowledge (40.5% vs 24.0%, p = 0.017) and limited nearby providers (57.1% vs 26.0%, p < 0.001). They also encountered more issues with dental insurance acceptance (46.4% vs 12.5%, p = 0.015), while urban autistic adolescents and young adults more often lacked dental insurance (33.3% vs 3.6%, p = 0.008). Significant rural-urban disparities were found in health care experiences, particularly provider availability and autism expertise in rural areas. Targeted interventions addressing rural health care barriers and enhanced provider training in autism care are needed.Lay abstractHealth care can be especially challenging for young autistic people, particularly when they move from child to adult health care. Our pilot study looked at whether the health care experiences are similar or different for autistic young people living in rural areas versus urban areas. We surveyed 180 autistic people aged 14-25 years about their health care experiences, including 96 from urban areas and 84 from rural areas. The survey asked about their experiences in finding providers, getting appointments, working with providers, and how well their providers understood autism. The results showed that rural young autistic people face some unique challenges. They often had to travel farther to find providers. They were more likely to work with one provider and report that their providers did not understand autism well compared to urban young autistic people, who often could choose between different providers. Interestingly, both rural and urban participants felt similarly about how well they could talk with their providers once they started working with them. Dental care stood out as particularly challenging among different health care services-rural participants had trouble finding dentists who accepted their insurance, while urban participants were more likely to have no dental insurance at all. These findings highlight important areas for improvement. Rural communities need more autism-trained providers and better access to nearby health services. In urban areas, addressing gaps in insurance coverage is critical. Together, we should improve care for all young autistic people, no matter where they live.

Autistic people are more likely to be transgender and gender diverse than the general population. Furthermore, co-occurring trait-level autism and transgender and gender-diverse identity are associated with symptoms of depression and anxiety, and autistic adolescents who identify as transgender and gender diverse have more internalizing behaviors than both non-transgender and gender-diverse autistic adolescents and non-autistic transgender and gender-diverse adolescents. However, no study has yet examined the extent to which transgender and gender-diverse identity predicts specific co-occurring mental health diagnoses in autistic adolescents. In a sample of 9027 autistic adolescents aged 13 to 17 drawn from the Simons Powering Autism Research for Knowledge cohort, 36 of whom we identified as transgender and gender diverse, we estimated univariate models of transgender and gender-diverse identity as a predictor of individual diagnoses. Depression, but no other diagnosis, remained statistically significant after adjustment for multiple comparisons. In a multiple regression model that incorporated known risk factors for adolescent depression (e.g. language impairment and disturbed sleep), transgender and gender-diverse identity remained a significant predictor (odds ratio: 4.01, 95% confidence interval: 1.87-8.67, p = 5.94 × 10-4) with an effect size at least as strong as that of a depression family history. This suggests transgender and gender-diverse autistic adolescents, who often face stigma and discrimination, are particularly vulnerable to depression.Lay abstract"Transgender and gender diverse" (TGD) people have gender identities that differ from the sex they were assigned at birth. Many autistic people have a TGD identity. Autistic adolescents who are TGD have more "internalizing symptoms," which include symptoms of depression and anxiety, than autistic adolescents who are not TGD. In this study, we examined a group of 9027 autistic adolescents, 36 of whom had a TGD identity, to determine which, if any, mental health diagnoses would be associated with TGD identity, and whether those associations would remain even after accounting for known risk factors for a diagnosis. We found that depression, but no other diagnosis, was associated with TGD identity. This association remained even when accounting for known risk factors for depression, and in fact, TGD identity was associated with depression at least as strongly as a family history of that diagnosis. This strong association is perhaps not surprising. TGD adolescents often face stigma, social rejection, and discrimination, which can lead to depression. Autistic adolescents can face similar difficulties. Autistic youth who also have a TGD identity may therefore be at particular risk of developing depression. Our study highlights that providers who work with autistic youth in the community should be aware of this risk so they can identify and treat depression when it is present. Future studies should investigate the relationship between depression and TGD identity in autism further, to determine how providers and caregivers can support these youth.

BackgroundAutistic adolescents are more likely to experience depression than their non-autistic peers, yet risk factors for depression in autistic adolescents are not well understood. Better mechanistic knowledge of depression in autistic adolescents is critical to understanding higher prevalence rates and developing targeted interventions. Altered reward responsiveness and social processes, as assessed by clinical and neural measures [i.e., electroencephalography (EEG)], are important risk factors for depression in non-autistic adolescents that remain largely unexplored in autistic adolescents, even though autistic people have higher rates of depression, exhibit reward differences, and often experience difficulties in social interactions. Therefore, a multimethod investigation of social and nonsocial reward responsivity and their associations with depression symptoms in autistic adolescents, particularly over time, is needed.MethodsThe current project will employ clinical and neural measures (i.e., interviews, EEG tasks) of social and nonsocial reward responsivity and depression to test associations between these constructs in autistic adolescents for the first time. A clinical sample of 100 autistic adolescents (14–17 years old) without intellectual disability and with varying severity of depression symptoms (at least 50% with current depression) will be recruited. Clinical and neural measures will be administered at two timepoints one year apart. Planned analyses will test cross-sectional and longitudinal relations between clinical and neural measures of reward responsivity and depression symptoms.DiscussionThis systematic study of reward responsivity and depression in autistic adolescents is likely to advance our collective understanding of depression in this population by informing risk stratification models and identifying potential intervention targets. Findings may also establish the reliability of several clinical and neural measures of reward responsivity in this population that can eventually be used to measure treatment outcome and identify predictors of treatment response.

Autistic adolescents are vulnerable to sleep difficulties, with up to 80% experiencing sleep problems, most commonly insomnia. Little is known about how autistic adolescents are involved in their own sleep treatment, and their depth of knowledge about their sleep difficulties. The aims of this study were to investigate autistic adolescent and parent perspectives of experiencing and managing insomnia, and what factors influence the development of these perspectives on insomnia and treatment. Semi-structured interviews were conducted with 11 autistic adolescents with insomnia (45% female, mean age 11.6 years) and 16 parents of an autistic adolescent with insomnia (94% female, mean age 45.1 years). A qualitative content analytic approach was used to identify categories in the data. Adolescents often perceived themselves to sleep well, despite reporting symptoms and functional outcomes of insomnia. Insomnia was managed through a range of intentional routine activities involving sounds, stimulus reduction, and regular bedtimes. Parents generally sought their own information about sleep, while adolescents obtained most of their knowledge from their parents. Findings from this study highlight a range of techniques that autistic adolescents and their parents use to address sleep difficulties. Findings suggest the need for increased professional awareness of sleep problems in autistic adolescents and further recommendations to parents for available sleep services.

Friendship has been identified as an important way to support autistic adolescents' social, emotional and cognitive development. However, research examining autistic adolescents' friendships has tended to use methodologies inaccessible to children with complex communication and learning needs. We examined the friendship experiences of 12 autistic adolescents (aged 12-15 years) with complex communication and learning needs who attended a specialist school. Using reflexive thematic analysis, we identified two themes. Within the first theme of 'reconceptualising friendship', the adolescents identified friends who evoked strong emotions and connection, without distinguishing between positive or negative interactions, or the standard boundaries of friendship. 'Friendships' with adults were also highlighted. Within the second theme of 'the context dependent nature of connection', the adolescents' descriptions of friendship communicated a preference for engagement via physical play in spaces that facilitated such interaction. Our findings underscore the importance of directly eliciting the views of autistic adolescents with complex communication and learning needs. They also highlight the value of facilitating opportunities to build social connection with peers and adults through physical play and activities that provoke strong emotions within a safe and contained context.Lay abstractFriendship plays a key role in helping autistic young people develop: socially, emotionally and cognitively. However, much of the research on friendships among autistic children and young people has overlooked those with complex communication and learning needs, using methods that are not accessible to them. As a result, their views on friendship have often been underreported. We investigated the friendship experiences of 12 autistic adolescents, aged between 12 and 15 years, who have complex communication and learning needs and attend a specialist school. By using methods that were adapted including visual resources, the children were able to share their views on friendship. Our two main findings were (1) children identified friends who evoked strong emotions and connection, without distinguishing between positive and negative interactions or the standard boundaries of friendship; and (2) children's descriptions of friendship communicated a preference for physical play in spaces that facilitated this. They also identified the need for space within structured settings. Our research gave the children the opportunity to identify their friends and express their preferences, offering important insights for future studies. These results highlight the value of supporting autistic children to build social connections by providing opportunities for active play and exploration of strong emotions within safe and familiar settings.

Autism is increasingly seen as a social identity, as well as a clinicaldiagnosis. Evidence suggests that autistic adults who have stronger autismsocial identification have better psychological well-being. Autism is acondition which impacts on social interactions, and so one’s sense of autismidentification may be particularly important for reducing social anxiety, whichis common in autistic adolescents. We aimed to investigate how the subcomponentsof autism identification relate to social anxiety in autistic young people. Wehypothesised that autistic young people who had a higher satisfaction with theirautism identity, and more solidarity with other autistic people, would havebetter psychological well-being and lower social anxiety. 121 autistic youngpeople between the ages of 15–22 completed questionnaires measuringself-reported autism traits, social anxiety, psychological well-being, anddifferent components of autism social identification. We conducted regressionanalyses controlling for age, gender, and autism traits. We found that higherautism satisfaction was associated with higher psychological well-being andlower social anxiety. Young people with higher autism solidarity had higherpsychological well-being, but there was no significant relationship betweensolidarity and social anxiety. We conclude that it is important to supportautistic young people to develop autism social identification.Lay abstractAutism is a diagnosis given to individuals by professionals but is alsoincreasingly seen as an identity which an individual can choose forthemselves. We wanted to explore how having autism as an identity affectsautistic young people. There is evidence that autistic adults have betterpsychological well-being when they feel more solidarity with other autisticpeople and feel positively about being autistic. We know that autisticteenagers often feel anxious in social situations. Having a positive autismidentity might help alleviate social anxiety associated with being autistic.We wanted to find out if autistic young people who felt more solidarity withother autistic people, and had more positive feelings about autism, hadbetter psychological well-being and less social anxiety. We asked 121autistic people aged 15–22 years to complete some questionnaires. Thesequestionnaires asked about the young person’s autism traits, social anxiety,and psychological well-being. The questionnaires also asked how satisfiedthey felt to be autistic (satisfaction) and how much solidarity they feltwith the autism community (solidarity). We found that autistic young peoplewho had higher autism satisfaction had better psychological well-being andlower social anxiety. Young people who felt more solidarity with otherautistic people had higher psychological well-being. There was noassociation between autism solidarity and social anxiety. We conclude thatis important to support autistic young people to develop positive feelingsabout autism and to feel solidarity with other autistic people.

The gender, sexuality, and reproductive health research node seeks to improve sexual and reproductive health care and outcomes for autistic people, with a focus on the lifespan of autistic women and lesbian, gay, bisexual, transgender, queer, intersex, and asexual individuals (LGBTQIA+). For most adults, sexuality and relationships are among the primary everyday contributors to life satisfaction, health, and well-being. Most people on the autism spectrum experience sexual attraction, and many adolescents and autistic adults are sexually active. All, including those who are not sexually active, benefit from sexual and reproductive health services. These services, which support self-determination, promote the ability to have safe, satisfying, noncoercive sexual experiences if desired and to make and implement informed decisions about reproduction. Although limited, research on sexual and reproductive health services for autistic people indicates an urgent need for investments, particularly in the areas of sexuality education; sexual violence; prenatal, perinatal, and postpartum care; and LGBTQIA+ health.Autistic people often have complex medical and educational support needs that may affect puberty, sexuality development, autonomy, and personal identity. This means they may require adapted or specialized sexual and reproductive health services, including sexuality education. Despite this, half of families raising autistic adolescents report that no health care provider ever talked with them about puberty or sexuality, and autistic adolescents are the least likely to receive school-based sexuality education compared with other disability populations.1 Service access disparities continue in adulthood, as multiple studies show autistic individuals are half as likely to receive basic sexual and reproductive health care, such as gynecology visits and cervical cancer screenings, compared with non-autistic individuals.2Rates of parent-reported sexual victimization for autistic children and adolescents are significantly greater than rates among non-autistic youth, and autistic college students experience more unwanted sexual contact compared with their non-autistic peers.3 For autistic youth, sexual abuse in childhood has been associated with running away from home, sexual acting out or offending, and suicide,4 but there is limited information about resulting physical, mental, or sexual and reproductive health sequelae across the lifespan.Research on the obstetric health and prenatal care experiences of pregnant individuals on the autism spectrum is currently limited with a paucity of large epidemiologic studies. However, early evidence suggests that pregnant autistic people have elevated risks of several pregnancy complications and may experience exacerbations of anxiety, stress, and challenges with sensory processing as a result of the biological and social changes of pregnancy.5 We do not yet know the reasons for these disparities. One issue raised by autistic people and health care providers is that adult care providers may not be aware of the needs of autistic patients.A substantial proportion of autistic adolescents and adults are LGBTQIA+. Autistic people are more likely to be transgender or gender nonconforming compared with non-autistic people, and findings from a recent autism registry study suggest that among autistic people able to self-report on a survey, up to 18% of men and 43% of women may be sexual minorities.6 Examining the intersection of LGBTQIA+ identity and autism reveals compounded health disparities that have not been adequately addressed by insurers and service providers, particularly as individuals transition to the adult medical system. The National Survey on Health and Disability showed autistic LGBTQIA+ respondents had worse self-reported health and health care access compared with non-LGBTQIA+ autistic people, with 2 times the rate of psychiatric diagnoses, 10 times the rate of smoking, and 2 times the number of poor physical health days per month. Although most autistic LGBTQIA+ individuals in this study had health insurance, they still reported more unmet health care needs than autistic non-LGBTQIA+ individuals, and approximately one-third had been refused services by a provider.7The gender, sexuality, and reproductive health priority research area will systematically address service gaps and health disparities for autistic individuals regarding sexuality education, sexual violence prevention, reproductive health and pregnancy, and LGBTQIA+ health. We will convene a stakeholder advisory group comprising people with relevant lived experiences and conduct a needs assessment to identify urgent knowledge gaps in autistic sexual and reproductive health, prioritize sexual and reproductive health research questions, and disseminate findings to our research networks. We will identify facilitators and barriers to gynecologic, obstetric, and primary health care for autistic women and LGBTQIA+ individuals. Finally, we will develop, implement, and evaluate interventions to improve access and utilization of sexual and reproductive health care and health status for this population. An important part of this priority research area’s work will be training early career professionals in the sexual and reproductive health of autistic people and LGBTQIA+ health so that emerging priorities continue to be addressed well into the future.

In the United States, autistic people face high rates of co-occurring mental illnesses and premature death due to self-harm, which are indicators of threats to mental well-being. Social inclusion may enhance mental well-being and resilience among autistic people. According to Simplican and colleague's (2015) model of social inclusion for people with intellectual and developmental disabilities, social inclusion is an interaction between community participation and interpersonal relationships. There is limited research on social inclusion that includes the integration of interpersonal relationships and community participation among autistic people or the impact of social inclusion on the well-being of autistic people. Additionally, little evidence exists regarding how autistic people prefer to be included in the community or form interpersonal relationships. The long-term objective of this project is to improve social inclusion factors to support the mental well-being of autistic people. This protocol describes a community-based, mixed methods pilot study to develop a definition of meaningful social inclusion for autistic people and to understand the relationship between meaningful social inclusion and mental well-being among autistic adolescents and emerging adults. The project uses a community-based, sequential mixed methods design with a formative phase (Phase 1) that informs a survey phase (Phase 2) and concludes with a process evaluation of the community engagement process (Phase 3). During Phase 1, we will recruit 10 community partners (autistic adults and stakeholders) and conduct sharing sessions to cocreate a definition of meaningful social inclusion and a survey of meaningful social inclusion and well-being. During Phase 2, we will recruit 200 participants (100 autistic adolescents and emerging adults and 100 caregivers) to complete the survey. We will examine whether meaningful social inclusion predicts well-being given sociodemographic factors using ordered logistic regression, with well-being categorized as low, medium, and high. During Phase 3, the community partners from Phase 1 will complete a survey on their experiences with the project. Ethics approval was obtained for this project in March 2023. We have recruited community partners and started the Phase 1 focus groups as of September 2023. Phase 2 and Phase 3 have not yet started. We expect to complete this study by March 2025. Using a community-based, mixed methods approach, we intended to develop a definition of meaningful social inclusion for autistic people and understand the role meaningful social inclusion plays in the well-being of autistic people. PRR1-10.2196/52658.

Social media sites provide autistic youth a familiar space to interact that is devoid of many of the challenges that accompany face-to-face interactions. As such, it is important to determine whether the linguistic profiles observed during online interactions are consistent with face-to-face interactions. This preliminary study took a step in this direction by examining gender differences observed in autistic adolescents in an online forum to determine whether they are consistent with the emerging body of research investigating linguistic gender differences in autistic adolescents. We analyzed the entries of self-identified autistic adolescents in an online forum to determine whether autistic girls (n = 99) and boys (n = 94) differ in their use of linguistic features as a proportion of total words produced. Transcriptions were coded across discourse, lexical, and semantic features and compared to previous research investigating linguistic gender differences in autistic people. Exploratory comparisons were also made to linguistic gender differences in neurotypical people. Of the linguistic features we examined, three out of four of the gendered usage patterns observed in the online forum language samples were consistent with previous research on face-to-face communication for autistic adolescents. Only one feature out of 12 occurred in the same gender distribution as previous research on neurotypical communication. Autistic girls and boys demonstrate largely consistent gender differences in their language use across in-person and online communication contexts. Interestingly, most of the significant gender differences previously reported in neurotypical communicators were not seen in this sample of autistic adolescents, suggesting that perhaps autistic individuals may linguistically express gender characteristics to a different extent or in a different manner than neurotypical individuals.

School is an important context for identity development across childhood and adolescence. These formative experiences impact adulthood. Minimal research has examined first-person autistic perspectives of how school experiences shape autistic identity as well as other intersecting identities. In this study, we examined the school messages that autistic individuals received and how individuals engaged with these external messages to formulate their identities. Ten U.S.-based autistic adolescents and adults ages 15-35 participated in qualitative interviews about their elementary through secondary school experiences, interactions with teachers and peers, and how these shaped their identities. Two interviewees also engaged in three follow-up interviews each for member checking and further data gathering. Using a critical constructivist approach informed by grounded theory, we coded interviews inductively. We ensured the trustworthiness of data through peer debriefing, reflexive journaling, memoing, and member checking. In the school context, autistic students received stigmatizing messages from teachers and peers regarding their autism. These messages varied in relation to students' other identities, including race and gender. Participants felt that, following autism disclosure, teachers viewed them narrowly through an autism lens. Participants actively resisted these negative messages from teachers and peers by reclaiming their autistic identity. They reframed and redefined their autistic identity, embraced their autism-related strengths, and actively made choices about how, when, and to whom to disclose their autism. Decisions around autism disclosure intersected with decisions to emphasize other identities such as race or mental health, especially when these identities were more visible or more acceptable to others. The school context conveyed powerful, stigmatizing messages around autism. In response, autistic students actively reclaimed and shaped their identities to prioritize a positive, empowered sense of self. Findings show a need for educators to model positive perceptions of autism, build an inclusive school community, and advocate for autistic representation in schools to facilitate autism-affirming messages.

Deficit narratives have reduced the autistic young person’s sense of self to a definition of ‘lack’, characterising autistic adolescents’ self-understanding as missing an essential ‘norm’ of social influence. The research reported on here challenges such discourses, arguing that employing alternative, inclusive research methods can enable autistic adolescents to share a complex and varied sense of self. This is a self which is influenced by, and interacts with, the social arena, including the key social environment of school. The findings, as presented through poetic transcription, incorporate the views of autistic adolescent pupils who attended a mainstream secondary school. The data illustrates how the self-view can be negatively influenced by comparisons with peers, and by the judgements of those peers. It also considers how autistic adolescents attempt to position themselves, aiming to be viewed positively by their peers and teaching staff. This demonstrates an understanding of how the self can be presented in varying social contexts to influence the perceptions of others. In so doing, the findings act as a counter to deficit-focused characterisations, illustrating how the sense of self of the autistic young people involved is both conceptualised and negotiated within the social world. Keywords: autism, social self, inclusive methods

BackgroundEmotion and peer problems tend to increase in autistic young people during adolescence. However, the extent to which endogenous (e.g., pubertal maturation) and exogenous (e.g., school adjustment, bullying) factors contribute to trajectories of emotion and peer problems in autistic young people is unclear.MethodsUsing data from the Millennium Cohort Study (MCS), we fitted latent growth curves to model initial levels and growth in emotion and peer problems during adolescence. We used generalised structural equation models to investigate whether pubertal maturation, school adjustment, bullying, and timing of autism diagnosis (none, early [<8 years] or late [≥8 years]) predict initial levels and growth of emotion and peer problems in autistic and non‐autistic young people, separately for males (n = 780) and females (n = 172).ResultsIn females, there were significant interactions between timing of diagnosis and (a) school adjustment and (b) bullying. In females with a late diagnosis of autism, lower school adjustment and greater bullying were associated with greater growth of emotion problems during adolescence. Furthermore, in females with an early diagnosis, lower school adjustment was associated with greater initial levels of peer problems. In males, later pubertal maturation was associated with greater growth of emotion and peer problems during adolescence, irrespective of autism diagnosis. In males with an early diagnosis of autism, greater bullying was associated with greater growth of emotion problems during adolescence.ConclusionSchool adjustment and bullying were associated with increasing emotion and peer problems in autistic adolescents, but their relative contribution varied according to timing of autism diagnosis and sex. Overall, this study supports the need for early identification and intervention for young autistic people experiencing poor school adjustment and bullying during adolescence.

Puberty is a transitional period presenting challenges for autistic adolescents, adolescents with disabilities and their families. There are opportunities for occupational therapy to provide support to this cohort as adolescents navigate the complexity of puberty transition. However, there is a lack of published evidence and knowledge translation to guide practice. It is important to scope the literature to gain understanding of the pubertal experiences of autistic adolescents, adolescents with a disability, their families and services accessed for support. The aim of this scoping review was to determine the current role and practice of health professionals supporting autistic adolescents and/or adolescents with disability and their families through puberty, to inform occupational therapy practice. A scoping review was conducted following JBI protocols. Four databases were searched systematically. Key search terms included health professions, terminology for the stages and process of puberty, and neurodevelopmental disorders and disabilities. Eligible articles included literature published within the last 20 years, focused on the experience or recollection of people with disabilities undergoing puberty and experience of parents, caregivers or health professionals who support them. There was no direct consumer or community involvement within this scoping review. After screening 795 articles, 90 full texts were reviewed, and 17 were retained. Studies included a range of health professions, with two studies focused solely on occupational therapy. Themes identified included (1) challenges experienced by adolescents; (2) parental concerns and caregiver burden; (3) the importance of education for clients, caregivers and families; and (4) perspectives and practice of health professionals. Autistic adolescents and people with disability experience additional challenges during puberty and require additional support needs. There is a lack of literature focusing specifically on the role of occupational therapy in this field. Evidence from health services can more broadly inform and guide future direction for occupational therapy practice. There is a need for puberty-focused training for allied health professionals and an opportunity for occupational therapy to position itself at the forefront of evidence-based, family-and-client-centred practice in puberty-related care.