Autistic youth and their families: Experiences of moving around and participating in the community

Research output: ThesisDoctoral Thesis

Abstract

Importance:
Autistic youth face decreased community participation for employment, education and social activities, compared to their non-autistic peers. Being able to move around the community independently to participate in these activities is vital as youth transition to adulthood. Autistic youth can have specific challenges with moving around their community, particularly with public transport and driving. Dependence on family may result in reduced community participation, work, training or social opportunities. Whilst research has focused on supporting driving skills, and to a lesser degree, public transport skills, there is limited research to help clinicians and families understand influences on the development of community mobility skills which support participation throughout childhood and young adulthood. A deeper understanding of these influences could guide interventions to support families to develop age-appropriate community mobility and participation throughout adolescence and build the foundations for independence in adulthood. Understanding the experiences of autistic youth will also provide critical evidence for establishing community space and transport policies which are inclusive of autism.
Objectives:
This PhD thesis by publication had three objectives. Firstly, to explore parental experiences of facilitating the development of community mobility for their autistic youth, secondly, to explore autistic youths’ everyday experiences of moving around their communities, and thirdly, to explore relationships between these experiences and how they shape the participation, social connectedness, quality of life and wellbeing of autistic youth. These objectives were met via four published studies.
Methods:
The first study was a literature review exploring the complex interplay of psychosocial environments which influence the development of non-autistic children’s independent mobility and drawing on autism research to conceptualise considerations for autistic children and youth.
The second study was a scoping review to map the focus of previous community mobility research with autistic people, and explore autistic adults’ experiences of independent community mobility and driving. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guided methodology and reporting. Seven databases were searched for papers published between 2000 and 2019, yielding an evidence map detailing 56 empirical studies regarding community mobility of any form, and autism, for people older than age five years. Thirteen studies were reviewed for the scoping review.
The third and fourth studies resulted from inclusive, focused ethnographic research with youth and families undertaken in Australia during 2018-2019. The third study explored the development of community mobility, driving and participation skills throughout adolescence and youth, from a parental perspective. Fifteen Australian mothers were interviewed about what it took to develop community mobility and participation for their autistic youth. The fourth study explored the community mobility and participation experiences, within their own communities, of autistic youth who were either independent or developing independence. Eight autistic youth from rural and urban Eastern Australia participated in interviews and community excursions. Data from mother and youth participant groups were analysed separately, using grounded theory. A participatory research group assisted in the interpretation and contextualisation of data.
Results:
Firstly, the literature review of psychosocial environmental influences on autistic youths’ community mobility development found different patterns of friendship, participation, parental concerns for safety and social development may result in a different developmental trajectory compared to non-autistic youth.
Secondly, the scoping review analysed 13 studies reporting specifically on experiences of autistic people with public transport, driving, and pedestrian navigation. None used inclusive methodology involving autistic adults. Those studies examining driving primarily focused on learner driver experiences. Most studies reported on personal and environmental factors; however, fewer reported on the broader social skill and personal narrative factors identified in the first study. The evidence mapping of autism mobility literature undertaken during the scoping review indicated broadly that most autism research had focused on learner driving, frequently in driving simulators.
In the third study exploring mothers’ perspectives of community mobility development, four major themes emerged. These described mothers’ actions across childhood and youth, to gently push development, teach skills, and then finally to let go in order to facilitate youths’ progress towards their hopes and dreams.
In the fourth study, which explored community mobility experiences with autistic youth, the key construct identified was the need to find a personal equilibrium to sustain community independence, because community participation and mobility were exhausting. This equilibrium comprised of balancing the energy demands of functioning in uncertain, socially complex, exhausting community spaces, versus being at home, where youth could be themselves and recharge. Youth developed a personal armour of strategies consisting of practice, planning and protection, to function in community spaces. Family support throughout childhood and adolescence built the foundation skills for community independence. The youth in this study identified childhood bullying as a major influence on their confidence to move around in the community. This contributed to their preferences for home-based activity, and reduced their opportunities throughout development to participate in the community, learn community skills and develop community independence.
Overall, three common themes emerged from the mother and youth studies. Firstly, bullying had an adverse impact on confidence for community participation and movement in community spaces. Secondly, youth needed to learn specific skills for navigating the community, including understanding social communication, understanding community situations and predicting social hazards, learning to blend in, and coping when things went wrong. Thirdly, youths’ development of personal autonomy was important for supporting community mobility, community participation, and ultimately, community independence. This involved learning skills for autonomy such as managing health, and setting and working towards personal goals. Importantly, learning an individual equilibrium was essential for wellbeing. Autistic youth identified that community uncertainties and social demands were exhausting, and carefully balancing multiple demands was essential for sustaining community mobility, participation, and overall community independence.
Conclusion:
The literature review identified that autistic youth face a different set of psychosocial influences on their development, compared to their non-autistic siblings and peers. It was found that reduced opportunities to participate in the community with friends and social communication challenges may result in autistic youth requiring additional support for practising community skills. Particular skills identified were social communication, safety skills, and problem-solving problems when navigating unpredictable community environments. However, the scoping review indicated that research had not addressed these issues, and therefore needed to adopt a much broader focus on autistic experiences in natural community environments. Research focus needed to be expanded to include non-driving options for community mobility, and to support community mobility skills during adolescence to prepare for the transition to community independence in adulthood. Research had also not explored contextual issues, such as community mobility experiences in rural areas, or explored the perspectives of older and more experienced autistic drivers.
The ethnographic research with mothers and youth revealed different considerations in comparison to the focus on autism community mobility research identified in the scoping review. Mothers provided perspectives on community mobility development over time, strongly indicating that earlier intervention throughout childhood and adolescence was required to build foundation skills that addressed specific social, communication and problem-solving skills required by autistic youth to navigate their community. Mothers believed that the medium for building community mobility and independence was participation in normative community activities, based on special interests. Mothers described how bullying undermined confidence for normative participation in the community with impacts lasting into adulthood. The in-depth research with autistic youth identified that feeling safe and accepted were critical to their community participation, mobility and community independence. Bullying and the resultant reduced confidence was again identified as influencing community mobility and participation decisions. Autistic youth indicated that a myriad of social interaction demands, and managing the uncertainty inherent in community environments, was exhausting. They learned an equilibrium between community participation and recovery at home, which was essential for maintaining community independence.
Significance:
The inclusive, ethnographic methodologies used in this research have revealed new insights into the development of community independence throughout childhood and adolescence. Complex interrelationships have been revealed between participation, mobility and wellbeing. These are critical for understanding how to support autistic youth with community mobility, participation, and confident community independence. Several unique contributions have been made to knowledge, which can in turn inform research and intervention, thereby supporting the community mobility and social inclusion of autistic children, youth and adults.
Firstly, bringing together the whole body of autism mobility research has called attention to the narrow scope of research, mainly focused on learner driving, and frequently in simulated contexts. The call to broaden research and clinical intervention to more comprehensively support community mobility and participation development throughout childhood and adolescence may positively influence clinical support and funding to help autistic youth achieve increased community participation.
Secondly, the research broke new ground to integrate focused ethnography with participatory research, which successfully supported autistic youth to express their perspectives in their own ways. This way of working with autistic individuals, families, supporters and communities, demonstrates how researchers can successfully work with autistic communities so that they are able to express their perspectives on the issues which are important to them.
Thirdly, this research has, for the first time, given autistic youth and mothers an opportunity to express what it is like for them to move around and participate in the community. These personal, private insights reveal the complex interplay between community environments, participation, mobility, wellbeing, and, ultimately, community independence. Their perspectives reveal strengths and challenges with driving, using public transport, and being in community spaces. These insights provide evidence to inform how clinicians can support autistic youth and their families with targeted interventions to increase community independence. They also reveal insights important for considering community, urban and transport policies which are inclusive of autism. Critically, this research indicates that further research regarding the long-term effects of bullying on autistic youths’ confidence to move around and participate in the community confidently, is urgently required.
Fourthly, this research has proposed a model to guide clinicians and families to build the essential foundation skills for community mobility, community participation, and community independence. Clinicians can use this model to provide targeted support and guidance to families to gently push and scaffold skills from the early years, so that autistic youth can more confidently traverse and participate in their communities, in readiness for launch into adulthood.
Original languageEnglish
Publication statusPublished - 2021

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