'Friendships' for young people with a learning disability or who are autistic: a participatory action research project

Abstract

Friendship has been ill defined for young people with autism and/or learning disabilities. Traditional definitions of friendship, which have been created by those who are not autistic or do not have a learning disability, often do not reflect the friendship experiences these young people have (Brownlow et al., 2015; Ostvik et al., 2017; Petrina et al., 2015). The scarce research about friendships for young people with autism and/or learning disabilities has highlighted that having friendships can support good mental health, aid inclusion and increase feelings of acceptance (Lafferty et al., 2013; MacArthur, 2013; Salmon, 2013; Sigstad, 2016). Despite these benefits, young people with learning disabilities or who are autistic often experience multiple barriers to developing and sustaining their friendships (Beckett, 2014; Bossaert et al., 2015; Diaz-Garolera et al., 2019; Forster and Pearson, 2020).

Autistic young people and those with learning disabilities rarely have a say over how their experiences, interpretations and understandings of these are represented within research. Often this is because young people with a learning disability and/or autism are viewed by some researchers as lacking the capacity or ability to take part in research (Werner and Roth, 2013; Haas et al., 2016; Thurm et al., 2022). When researchers do try to include the voices of young people with autism and/or learning disabilities, they can be confronted with multiple barriers as the ethical application processes of academic institutions are often laden with views that people with autism and learning disability are vulnerable, incapable and as lacking capacity (Biros, 2018; McDonald et al., 2018; Thurm et al., 2022). This research seeks to challenge these dominant deficit views which restrict and limit their participation and provides an example of their competence and capacity to be fully involved as co-researchers rather than as objects of research to be studied by ‘experts’.

Using the philosophical construction of epistemic injustice, this research explores the multiple ways young people with learning disabilities and/or autism experience testimonial and hermeneutical injustice through their friendship experiences. Epistemic injustice occurs when the value of the voice of a marginalised individual, or group, with less social power is diminished by those individuals, or groups, who hold more social and identity power. People are harmed in their capacity as knowers in two key ways: testimonial injustice and hermeneutical injustice. Testimonial injustice occurs when someone relies on negative prejudicial stereotypes to judge the credibility or trustworthiness of testimony of someone from a marginalised social group as less credible than those from other social groups. Hermeneutical injustice occurs when an individual or social group is unable to make sense of or convey their experiences because of a gap in shared understanding which is often created by systematic marginalisation.

This participatory action research project was guided by a group of co-researchers consisting of seven young people (aged 14-19) with a learning disability and/or autism, two of their youth workers from Mencap NI and a PhD researcher. The co-research team chose friendship as the topic of focus as it was an area of their lives that they felt was important and an area they wanted others to know more about so that they could get better support. The co-researchers chose to use qualitative paper and online questionnaires for research cycle one, and online and email interviews for research cycle two. These were used to explore the perspectives of young people with learning disabilities and/or autism, teachers, youth workers and parents. Different qualitative methods were chosen to be inclusive of a wide range of abilities and needs in the hope of increased participation. A total of 109 questionnaires and 24 interviews were completed across the four participant groups.

The key findings are that friendships are important for young people with learning disabilities and/or autism as they are critical to their mental health, wellbeing and feelings of acceptance. However, young people with learning disabilities and/or autism experience multiple practical, personal and epistemic barriers to their friendships. These barriers make it difficult for them to develop and sustain their friendships potentially resulting in fewer friendships than similar aged peers. Significant adults in young peoples’ lives, such as parents, teachers and youth workers, provide many different types of support for their friendships. However, this does not always reflect the types of support young people with learning disabilities and autism want nor need. This research also illuminates the multiple ways in which autistic young people and those with a learning disability experience epistemic injustice as part of their friendship experience (Fricker, 2010). Young people with a learning disability and/or autism continue to be subjected to negative attitudes and stigma which influence the credibility accorded by adults to their words and results in testimonial injustice. Credibility deflation has a significant impact on their ability to share their concerns about friendship and social experiences (such as bullying) as their testimony is not taken seriously. Testimonial injustice also restricts their ability to influence the type of support they are given with their friendships. The thesis concludes that young people with learning disabilities and autism should be consulted about the types of support they are offered with their friendships within formal and informal educational settings and that their suggestions are taken seriously and acted upon.

Date of Award	Jul 2025
Original language	English
Awarding Institution	Queen's University Belfast
Sponsors	Northern Ireland Department for the Economy & Belfast City Council
Supervisor	Siobhan McAlister (Supervisor) & Alison MacKenzie (Supervisor)