Understanding the role of self-determination in shaping university experiences for autistic and typically developing students in the United Kingdom

With more autistic students enrolling in higher education, little is known about how autistic students can actively and effectively shape their own university experience through self-determination. This study explores how both autistic (n = 18) and typically developing students and recent graduates (n = 18) perceive their self-determination during their transition into, through and out of university in the United Kingdom. Students reported many shared and unique aspects of autonomy, competence and relatedness underlying self-determination. Many autistic students also discussed autism-related strengths facilitating academic pursuit at university, though found coping with transitional changes more difficult than typically developing students. Using strength-based approaches to help autistic students to actively adapt to routine changes might facilitate their self-determination during transition to university. LAY ABSTRACT: Prior research suggests that autistic students in higher education might struggle with developing autonomy, competence and establish relatedness due to their executive functioning and social communication difficulties. We interviewed 18 autistic and 18 typically developing students to explore how students perceived themselves to be in control of their university experience. Both groups provided anecdotal examples that supported similar perceptions of self-determination in shaping the academic, daily living and socialisation aspects of university life. Autistic students reflected on their cognitive strengths such as attention to detail, persistence and ability to tailor their academic studies towards their interest. Varying degrees of sociability were noted, with some autistic students preferring to focus their self-determination efforts on academic success, while others treasured the novel social experiences including peer support and friendship at university. Compared to greater flexibility endorsed by typically developing students, autistic students perceived establishing a routine at university to be a necessity and were self-determined in maintaining stability amid a sea of change. Recognising strengths and self-determination efforts in autistic students can help stakeholders support their personal development towards independent living and self-sufficiency in adulthood and to successfully transition into, through and out of university

Phenomenology of gender dysphoria in autism: a multiperspective qualitative analysis

BACKGROUND: Autistic people are overrepresented in gender clinic settings, but limited evidence is available to guide clinical decision making for this patient group. We aimed to generate a comprehensive understanding of the phenomenology of gender dysphoria in autistic people. METHODS: We conducted a multi-perspectival interpretative phenomenological analysis (IPA), from five different perspectives; autistic young people and adults with experience of gender dysphoria, parents of young people, and clinicians working with autistic people with gender dysphoria in both adult and young person settings (n = 68). RESULTS: IPA analysis resulted in two themes, 'discovering gender identity' and 'the complexities of moving towards gender comfort'. Participants agreed that there was often an interaction between gender dysphoria and features of autism such as sensory sensitivities. There was relative consensus across groups about the need for autism adaptations to be made in gender clinics. Autistic adults were more likely to see autism as an important identity than young people, but both groups were clear that autism did not impair their understanding of gender. In contrast, some parents and clinicians working with young people expressed concern that autism did impact self-understanding. DISCUSSION: While the groups tended to agree on the ways in which particular features of autism can compound gender dysphoria, there were a range of perspectives on the ways in which autism impacted on self-knowledge. CONCLUSION: Recommendations for adaptations when working with autistic people with gender dysphoria are presented

Autistic adults’ experience of restricted repetitive behaviours

Background: Restricted and Repetitive Behaviours (RRB) are a core characteristic of autism, though little is known about autistic people’s lived experience of these phenomena. Research has defined RRB in terms of: 1) a distinction between higher-order and lower-order RRB; as well as 2) a perceived lack of function and 3) a perceived lack of voluntary control. Method: Twelve autistic adults without intellectual disability were interviewed to elucidate an understanding of these three issues from their lived experience. Results: Thematic analysis identified four key themes regarding RRB: Self-regulation; positive impacts; negative impacts and suppression. The distinction between higher-order and lower-order RRB was not reflected in the adults’ lived experience. In addition to having both positive and negative impacts, the expression of RRB for some behaviours in certain contexts was largely, though not wholly, under voluntary control. Perceived negative evaluations from others can result in strategies to minimise the expression of RRB to observers, although suppressing RRB can be stressful with a cost to the individual. Conclusions: These findings provide insight into the important functions of RRB and both its positive and negative impacts. It indicates that future research should look to help maximise the positive impacts and minimize the negative, and consider the impact suppression of RRB has on mental health and functioning

Healthcare clinician perspectives on the intersection of autism and gender dysphoria

LAY ABSTRACT: Autistic people are more likely to have a gender identity which does not match their sex assigned at birth. Some people experience distress about their sex and gender not matching, which is called gender dysphoria. Such individuals may wish to attend a gender clinic to access healthcare support for gender dysphoria. Currently, there is limited evidence to help clinicians best support autistic people who need healthcare for gender dysphoria. We wanted to find out what healthcare clinicians think about working with autistic patients with gender dysphoria. We interviewed 16 clinicians who work in healthcare services with adults and young people who are autistic and experience gender dysphoria. We recorded the interviews and carefully analysed the content to find key themes. We found that clinicians worked with patients to try and better understand their experiences of gender dysphoria. Clinicians identified features of autism that they believed were related to gender identity and dysphoria including different thinking styles, social differences, and sensory sensitivities. Clinicians noticed that autistic people spoke about their gender in different ways to non-autistic people. Clinicians tried to adapt their practice to better meet the needs of their autistic patients. These adaptations tended to focus on differences in the assessment process, for example, offering longer or shorter appointments and changing their communication style. We conclude that clinicians were offering an individualised approach to autistic patients experiencing gender dysphoria. However, these clinicians were particularly interested in working with autistic people, and so may not be representative of the wider clinician population. Clinicians working in this area should receive training on autism adaptations and the intersection of autism and gender dysphoria

The lived experience of gender dysphoria in autistic young people: a phenomenological study with young people and their parents

Gender dysphoria is distress in relation to incongruence between an individual's gender and sex assigned at birth. Gender clinics offer support for gender dysphoria, and there is a higher prevalence of autism in young people attending such clinics than in the general population. We aimed to investigate the lived experiences of autistic young people who have experienced gender dysphoria, and their parents, using a multi-perspectival IPA design. Young autistic people aged 13-17 years (n = 15), and their parents (n = 16), completed in-depth interviews about the young person's experience of gender dysphoria. We analysed each individual transcript to generate individual themes, and for each of the dyads, developed themes which acknowledged the similarities and differences in parent-child perspectives. The first superordinate theme was coping with distress which had two subordinate themes; understanding difficult feelings and focus on alleviating distress with external support. This theme described how young people were overwhelmed by negative feelings which they came to understand as being about gender incongruence and looked to alleviate these feelings through a gender transition. The second superordinate theme was working out who I am which had two subordinate themes: the centrality of different identities and needs and thinking about gender. This theme described how young people and their parents focused on different needs; while young people more often focused on their gender-related needs, parents focused on autism-related needs. We conclude that young people and parents may have different perspectives and priorities when it comes to meeting the needs of autistic young people who experience gender dysphoria

Personality traits, autobiographical memory and knowledge of self and others:a comparative study in young people with Autism Spectrum Disorder

The relationship between dissociable components of autobiographical memory (e.g. semantic personality traits and episodic memory retrieval) and other cognitive skills that are proposed to enable one to develop a sense of self (e.g. introspection) have not previously been explored for children with autism spectrum disorder. This study compared autobiographical memory (semantic and episodic) and knowledge of self (internal/external self-knowledge and introspection/mentalising abilities) in children (aged 11–18 years) with high-functioning autism spectrum disorder and typically developing controls (total N = 48). Novel and standard tasks were employed. Compared to typically developing controls, young people with autism spectrum disorder had autobiographical memory difficulties that were characterised by a reduction in the retrieval of semantic personality traits, with more initial prompts required to facilitate episodic memory retrieval and fewer episodic memories containing emotional and sensory information. Knowledge of the self and others was also impaired, with reduced introspection and poorer mentalising abilities. Young people with autism spectrum disorder were also identified as presenting with an atypical relationship between autobiographical memory and self-knowledge, which was significantly different from typically developing controls. Test performance is discussed in relation to the functions of autobiographical memory, with consideration of how these cognitive difficulties may contribute to clinical practices and the social and behavioural characteristics of autism spectrum disorder. </jats:p