Topic: Autistic life trajectories resulting from transition effectiveness

Research Question: Investigating the barriers and facilitators contributing to a successful transition from school to adulthood as an autistic person/student (AP), highlighting gender differences.

Objectives:

1) To investigate and complete a comparative analysis of the roles of transition services in Northern Ireland (NI) and the Republic of Ireland (ROI), assessing the extent responsibilities are implemented.

2) To examine student and familial expectations/experiences of transition planning/implementation prior, during and post transition from school to adulthood. The trajectory of wellbeing outcomes for students and families (e.g., mental, and physical health, relationships, finance, accommodation, education, and work), with focus on gender outcome differences, will be mapped longitudinally.

My research sets out to compare NI and the ROI (Europe) using a comparative approach. I aim to create a comprehensive overview of the issues related to an AP transitioning to adulthood and the impact of this on their life trajectories, affecting individuals in both countries. The comparison between a European country and one which has since left the European Union will also provide insight on the differences between the two contexts from the policy, legislation, and practice perspective.

Framework:

The impact of gender inequalities/disparities as AP transition to adulthood will be further understood, as an aim of this research and will be underpinned by three main theories. Bronfenbrenner’s bioecological systems theory (1) and the related model Process – Person – Context – Time will enable recognition of how trajectories of AP can be predetermined based upon gender-based issues and the quality of their transition process on life outcomes in adulthood. The framework considers developmental outcomes as a consequence of interactions between an individual and context throughout life. The Bioecological systems theory lens aptly supports us to understand the lived experiences and the effects of this most impactful transition, on AP, particularly when underpinned by longitudinal data (1).

The Schlossberg Transition Theory (2) is also pertinent; this theory argues transitions are as such if perceived so by each individual. The negative effects of transitions can be intermediated by the “4 S’s”, situation, self, support, and strategies. Situational supports include prior experience, timing, levels of stress and the duration of the transition. Self-support includes positive individual psychological well-being, emotional resilience, and personal and demographical assets. Access and disposal to external support and effective coping strategies impact the success of this transition. External support in the form of parental involvement is critical to life outcomes (3).

The self-determination theory identifies the necessity of providing opportunities throughout childhood and adolescence for AP to self-advocate developing autonomy. Self-determination should guide the transition process, reducing anxiety (4) and providing people with ownership over their lives. The precursor of self-awareness, that being understanding of one's own strengths, accommodation needs, self-belief, autonomously set goals and supportive parents is significant to transition success. The lens of self-determination theory, values self-determination as the causal link between making choices and those being heard and acted upon which is related to a quality of life, free from external intrusion (5).

Data will be collected through a mixed method participatory approach, including quantitative questionnaires and qualitative semi-structured interviews. Participatory research provides autistic participants (APP’s) meaningful input, leading the direction of research. This research is led by an autistic researcher, will partner with APP’s as co-creators and consult with community autism advocates. An inclusive research environment, methodologies and dissemination will ensure open access engagement for everyone. Within project 1 quantitative questionnaires created through deductive and participatory techniques tested through a pilot study, will triangulate perspectives from transition services, AP, and their families. A minimum of five settings in NI and five in ROI, which support transition planning will be recruited specifically. The demographic will include secondary/special schools and transition support autism charities, from rural and urban communities of various economic, political, and religious status. The questionnaire will be completed by the lead transition staff member in each setting. Cross-border research will enable open, critical, and constructive research across the island, analysing current issues, promoting a collaborative response. From each setting, a minimum of two APs, will report on transition support awareness and what is provided from the setting they attend via a questionnaire. Student inclusion criteria includes a formal diagnosis of autism at any age prior to participation, resident in NI/ROI, without an intellectual or other disability, aged between 14-18 years, with English language fluency. Parents/guardians of each AP will also complete a questionnaire. Once data saturation has been achieved, through content and thematic analysis, no further participants will be recruited. Project 2 entails a longitudinal interview schedule, created through inductive and participatory techniques, piloted to ensure inclusive methodologies, and completed through qualitative semi-structured interviews with APP’s and parents. A minimum of five APP’s and their families in the ROI and five in NI will be recruited. Five interviews will occur during the transition period per APP/family (i.e., 1 prior, 2 during, 2 post-transition) (ten interviews per household). Data saturation acquired through content analysis will signal recruitment completion. Inclusion criteria listed in project 1 will apply to project 2 family demographics and APP’s, exceptions being an older age range between 17-20 and an even distribution of APP genders. Families should include those who have one AP and families who have experienced autism transition with an older sibling. I will conduct interviews, transcribe audio recordings verbatim, anonymise data reducing bias during analysis, completed through NVivo software.

Project 1 expectations entail unsystematic approaches and ambiguous stakeholder’ responsibilities regarding transition planning (6). Lack of evidence-based transition support for AP may exist. The role of planning and responsibilities may be indiscriminately managed by differing staff within settings. Planning arbitration may contribute to parents’ uncertainty of their role/feeling ill-prepared to support their AP (2) impacting health and wider familial issues. Lack of planning consultations with AP may lead to autonomy/self-determination regression (7), endorsing mental ill health/disempowerment and negative self-fulfilling prophecy (8). Project 2 predictions comprise prior transition parental expectations, based on previous/lack of experience undertaking the process with an autistic/disabled sibling/s (9). Lack of transition experience may be beneficial; low expectations may encourage parental planning/advocacy, advantageous to AP’s outcomes. Contrastingly, knowledge limitations regarding support provided by settings may lead to unfulfilled planning, accumulating parental/familial stress, negatively impacting AP life outcomes. During transition planning, familial expectations (10) and gender (11) may influence AP outcomes. Familial expectations regarding their AP’s life capabilities/ambitions may influence the direction the AP takes. Expectations could support the AP to reach their potential or infantize due to lack of resources/knowledge, irrespective of capabilities, wants, or needs. The birth gender of AP may influence support provided. Males may have acquired an earlier diagnosis, been privy to early support leading to higher levels of self-awareness/self-determination. Equally, males may have experienced victimisation (bullying/lack of beneficial support). Females comparatively may have avoided stereotyped bias/discrimination due to camouflaging/masking/lack of diagnosis but experienced mental ill health, lacked support and have lower self-awareness. Self-awareness of strengths, accommodation needs and being able/having an advocate to communicate needs may heighten life quality post transition. Self-awareness may impact accommodation, securing an inclusive career, attendance and completion of higher education, social interest participation, management of physical and mental health needs. A poor transition likely leads to disadvantage (12).

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