Amplifying the voices of autistic young people: insights into puberty, school experiences, and participatory research

Abstract

Many autistic girls face the challenges of misdiagnosis, late diagnosis, or no formal diagnosis at all, and report feeling overlooked, misunderstood, unsupported, and exhausted by trying to ‘fit in’ to an unaccommodating neurotypical world. When autistic girls reach early adolescence, they experience the additional challenges of the transition to secondary school, increased school demands, the complexities of social relationships, and the onset of puberty, which can all have a considerable impact on mental health. The need to promote the voices and involvement of autistic young people in research is paramount to ensure that current literature reflects the matters which are most important to the autistic individuals themselves, and to bring about effective, meaningful, support.

This thesis is divided into two separate but related research papers: a systematic literature review and an empirical research project. The systematic literature review aimed to summarise existing research addressing autistic girls’ and women’s experiences of puberty and menstruation, as well as the views of those who care for them. This review also aimed to uncover what effective support looks like for autistic girls and women in relation to puberty and menstruation, whether this aligns with current intervention literature, and whether autistic voice is included in intervention design and evaluation. Using a narrative synthesis approach, the systematic review synthesised the findings from 14 studies to tell a story regarding autistic females’ preparation for and journey through puberty, as well as the support that they desire (the ‘what’ and the ‘how’). Lack of education prior to puberty, the detrimental impact on wellbeing, difficulties with menstrual self-care, and the reciprocal relationship between autism and puberty were highlighted as areas of challenge by autistic girls, their caregivers, and educators. While there was some alignment regarding the support desired and the focus of support within the seven identified intervention studies, particularly with regards to self-care, the majority did not include autistic voice and maintained a within-child focus. This review highlights several recommendations for pubertal support, including early education emphasising the ‘normalcy’ of puberty and menstruation, a focus on promoting self-care skills, dignity and advocacy, and the importance of individualisation. Furthermore, the need for autistic voice within research literature, as well as the need for an interactionist perspective on pubertal support is asserted.

The empirical paper aimed to uncover some of the successes, challenges, and future directions of implementing co-created resources within school settings, with the voices of autistic young people at the centre. These resources were previously created by East (2024) and a group of autistic girls and were designed to raise awareness of autistic girls’ school experiences. In the present study, a team of five autistic students were recruited to join a participatory research team, and were involved in the planning, delivery, and evaluation phases of resource implementation. Their views of being involved in this process were explored using semi-structured interviews and were analysed using reflexive thematic analysis. Using an oak tree metaphor, representing the positioning of the findings within the wider forest (or ‘societal’ context), six themes and 11 sub-themes were generated. The six overarching themes included ‘conceptualising autism’, ‘empowering, influencing, and advocating’, ‘cultivating contentment’, ‘sense of togetherness’, ‘conditions for growth’, and ‘evolution over time’. These themes bring to light the many emotional and social benefits of participatory research processes for autistic young people, including a strong sense of belonging, while also highlighting the challenges of facilitating change within a secondary school setting, with particular regard to motivation and investment. Recommendations to promote the success of participatory research teams and resource implementation are proposed.

In terms of autism awareness, it is hoped that this research will promote the knowledge and understanding of school staff and educational psychologists, with regard to autistic young people’s experiences, highlighting the importance and value of actively seeking and listening to their voices. It is also hoped that this thesis may path the way for future participatory research with autistic individuals, on topics that are meaningful and relevant to the autistic community. In terms of intentional behaviour change and impact, it is hoped that this work will continue and that the voices of participants within the empirical study will influence implementation practices within schools.

More information

Identifiers

ORCID for Laura Jane Salmon: orcid.org/0009-0000-3245-1998

ORCID for Hanna Kovshoff: orcid.org/0000-0001-6041-0376

ORCID for Sarah Parsons: orcid.org/0000-0002-2542-4745

ORCID for Henry Wood-Downie: orcid.org/0000-0003-4965-7778

Catalogue record

Export record