Animation-based learning for individuals with Fetal Alcohol Spectrum Disorders (FASD)

The purpose of this thesis is to explore the animation production process and determine alignment and suitability to best practice educational approaches for an identified user group, in order to propose an engaging, multisensory educational intervention centred around creative storytelling and animation film making. It draws on knowledge and expertise from literature, professional and lived experience of a widely unknown and misunderstood condition, in order to challenge the lack of academic understanding beyond the realms of clinical evidence. It evolves from a place of passion, as I simply stumbled upon this condition at the beginning of my research journey, unaware of how the discovery would shape not only my research, but my career, as I went on to develop the UK's first educational intervention service for children and young people with Fetal Alcohol Spectrum Disorder (FASD) and complex neurodevelopmental profiles, before taking a role with the National Organisation for FASD to work on their education projects. The need for such works is growing as FASD is the 'most common preventable cause of learning disability/difficulty in the UK' (Carpenter 2011, 37) and estimates of its impact range between 6 - 17% (McQuire et al. 2019, 344) and 1.8-3.6% (McCarthy et al. 2021, 2271) of the UK's population, yet societal awareness and academic literature remains sparse almost 50 years after its identification. However, research does suggest benefits of engagement in creative, multisensory practices for this population, presenting opportunities for the development of educational interventions centred around such. People with FASD face numerous challenges, notably in the realms of education, which led this study to develop a mixed-method approach, required in order to address the significant gaps in knowledge and form much-needed foundations of understanding from which interventions and supports can evolve. Co-design is used through autoethnography, interviews and stakeholder consultation in the form of evaluative research to generate, collect, reflect on and analyse data around caregiver experience. This is then translated to an educational context from which an educational intervention can be hypothesized. The framework design is supported by environmental and facilitation recommendations and delivery guides to ensure transferability. With this knowledge in place, the study continues to propose a Learning Programme based on best practice approaches, a framework specifically designed to address the educational needs of individuals with FASD, with focus placed on individuals in upper primary and lower secondary (UK) school age ranges (approximately 7 - 14 years). The framework is an interactive and individualised intervention built on the animation production process, drawing on years of my own experience and academic study. My passion for, dedication to and fascination with the uses of this practice outside of the context of entertainment is a result of the process being a creative, visual method of narrative building. Its multisensory and adaptable nature, in this context encourages full individualisation of the programme dependent on the participants cognitive ability, forming the starting point of exploration for this research. Ward argues, "one of the key theoretical and practical considerations for anyone trying to offer an outline of animation - as a mode of practice, a pedagogy, a knowledge area - is its multi-sitedness." (Ward 2006, 230). Current academic literature provides extensive, and highly valued knowledge on the medical, neurological and scientific perspectives of FASD, but is yet to address the caregiver experience. This study therefore addresses a significant gap in knowledge where the current literature does not offer guidance or evidence from which studies beyond the science/medical fields such as this, can base their understanding and draw foundational knowledge from. As this intervention takes inspiration from such an unlikely source as animation production, it became imperative to consider facilitation, delivery as well as the knowledge and experience of the individual delivering the programme. Is the facilitator to be primarily trained and experienced in animation production, or FASD? Drawing heavily on my own unique experience and knowledge of both fields, later supported by data generated and gathered within this study, it became apparent that considering the knowledge and skillset of any potential facilitator and determining an appropriate training programme for facilitators to complete was imperative.