Thompson, G. A., Raine, M., Hayward, S. M., & Kilpatrick, H. (2020). Gathering community perspectives to inform the design of autism-friendly music-making workshops for wellbeing. International Journal of Wellbeing, 10(5), 117-143. https://doi.org/10.5502/ijw.v10i5.1497 Grace A. Thompson The University of Melbourne graceat@unimelb.edu.au Copyright belongs to the author(s) www.internationaljournalofwellbeing.org 117 ARTICLE Gathering community perspectives to inform the design of autism-friendly music-making workshops for wellbeing Grace A. Thompson · Melissa Raine · Susan M. Hayward · Hannah Kilpatrick Abstract: Many autistic people report experiencing social isolation, a recognized risk factor for poor psychological wellbeing. Promoting social inclusion is therefore a vital yet complex task. Community-based creative activities such as music groups can improve individuals’ sense of social connection and reduce the experience of social isolation. However, limited literature is available that describes autistic people’s perspectives about how to foster successful engagement in these creative and inclusive group opportunities. This project aims to gather perspectives from autistic individuals aged between 18 to 25 years to inform the design of autism-friendly music- making workshops for wellbeing. This co-design project involved a research team comprizing autistic and non-autistic academics, and an advisory group that included autistic young adults and autism advocates. Together, we designed an online survey and structured interview questions to gauge autistic people’s preferences for engagement in group-based music activities. There were 30 responses to the online survey questions which collected demographic information, opinions about group music-based activities, and views about ways to best support access and participation in the local community. In addition, five structured interviews were conducted with survey participants who volunteered to provide in-depth follow-up responses. Survey data are presented descriptively, and interview data underwent inductive thematic analysis. Participants described being motivated to join music-making workshops offered in the community and proposed various ways to improve accessibility. The qualitative themes from the survey free text and interviews suggest that both environmental and social factors work together to create a sense of safety and inclusion. In particular, a welcoming atmosphere and acceptance of diversity were expected from the workshop facilitator and group members. These findings have important implications for the co-production of future music-making workshops for the wellbeing of autistic people. Keywords: autism spectrum, young adults, music participation, co-design, creativity, wellbeing Introduction Social activities in the community that are accessible to a diverse range of people are scarce (Shiloh & LaGasse, 2014). The number of autistic people in Australia is estimated to be somewhere between one in 70 people (Autism Spectrum Australia, 2018) and one in 150 (Australian Institute of Health and Welfare, 2017). Autism is hallmarked by challenges with social interaction, and often sensory sensitivities (American Psychiatric Association, 2013). The autistic community in Australia is substantial, yet a recent survey by a peak body for autistic people reported that the majority of the general public in Australia (84%) perceive that discrimination against autistic people occurs (Jones, Akram, Murphy, Myers, & Vickers, 2018). Perhaps unsurprisingly, 70% of the autistic participants surveyed in the same report felt socially about:blank Autism-friendly music-making workshops Thompson, Raine, Hayward, & Kilpatrick www.internationaljournalofwellbeing.org 118 isolated, while others indicated they had lost friends and jobs as a result of their condition and worried about how others would behave towards them. These relational concerns seem to spill over into their participation in Australian cultural life, with 54% of autistic people reporting their main reason for avoiding going out to venues was because they had nobody to go with (Jones et al., 2018). A study of 220 Australian autistic adults reported that the combination of environmental factors, such as noise levels, and social interaction challenges often create substantial anxiety and exhaustion leading to avoidance and isolation (Ee et al., 2019). Social Isolation and Mental Health The mental health of people living with disability is increasingly being recognized and reported, particularly within the Australian autistic adult population (Uljarević et al., 2019). Compared with the general population, as many as 60% of autistic people in Australia experience anxiety (Uljarević et al., 2019), and up to 49% experience depression (Uljarević, Hedley, & Cai, 2020; Uljarević et al., 2019). Both anxiety and depression increase suicide risk (De La Vega, Giner, & Courtet, 2018; Hand, Benevides, & Carretta, 2019), as highlighted by a large population-based study from Sweden reporting risk of death by suicide as seven times greater in autistic people compared with those in the general population (Hirvikoski et al., 2016). Loneliness is frequently reported amongst autistic adults (Ee et al., 2019) and adolescents (Lasgaard, Nielsen, Eriksen, & Goossens, 2010). Combined with a lack of perceived social support, loneliness also plays a role in suicide risk (Hedley, Uljarević, Wilmot, Richdale, & Dissanayake, 2018). The majority (63%) of autistic Australians aged under 21 years report experiencing difficulty fitting in socially (Australian Institute of Health and Welfare, 2017). Some autistic people camouflage their autistic traits in social settings in an attempt to “fit in” (Hull et al., 2017). Camouflaging can lead to feelings of shame and internalized stigma (Cage & Troxell- Whitman, 2019), and the effort and energy required to hide autistic traits can be detrimental to wellbeing (Hull et al., 2017). Therefore, finding ways to build inclusive social support networks appears to be fundamental to addressing mental wellbeing in an autistic population. First-Hand Perspectives on Social Isolation from Autistic People The neurodiversity paradigm (Singer, 1999, 2016) positions autism within the social model of disability, highlighting that society “tends to be physically, socially and emotionally inhospitable towards autistic people” (den Houting, 2019, p. 271). First-hand accounts from non-academic sources such as blogs and artworks provide deeply personal recounts of some of the social barriers experienced. Sarah Kurchak (2018) vividly describes the attitudinal barriers she faces, explaining “I’ve spent my whole life being told that non-autistic people are so brilliant and intuitive when it comes to social issues. Like many autistic people, though, I haven’t always felt like I’ve seen much empathy, compassion, or understanding.” Tim Chan’s powerful poem I Can similarly comments on the impact of negative social attitudes: In a non-comprehending world, in which I am an alien, a social misfit with no friends, I believe “I can't”… I am going to see me as a person, guided by inner purpose, with the resources to fulfil my needs and dreams, And I realize “I CAN” live the life I dream of. (Chan, 2015)1 1 This excerpt of the full poem is reproduced here with permission. Autism-friendly music-making workshops Thompson, Raine, Hayward, & Kilpatrick www.internationaljournalofwellbeing.org 119 Within the social model of disability, the wellbeing of all citizens is a collective responsibility (Oliver, 1983, 2013). Disability theorists highlight this collective responsibility by noting a “double empathy problem” in society when autistic people are expected to understand non- autistic people, but non-autistic people do not seek to understand autistic ways of being (Milton, 2012). When autistic ways of being are perceived as abnormal, these negative impressions have been found to lead to social exclusion in Western countries (Sasson et al., 2017). Runswick-Cole (2014) reflects that while the neurodiversity movement has fought for the rights and recognition of autistic people, this position may intensify a binary sense of “us” and “them” which could unintentionally entrench beliefs about difference. In contrast, fostering knowledge and understanding of autism decreased stigma in college students from North America who participated in online training courses (Gillespie-Lynch et al., 2015) and briefing sessions (Curtis & Mercado, 2004), suggesting that the “double empathy problem” can be improved through education and advocacy. Further, psychiatrists who call for greater acceptance of the broad spectrum of “autistic humanity” (Mottron, 2017, p. 823) emphasize that services for autistic people should focus on strengths rather than deficits, and foster individuals’ access to social and cultural experiences. Music Participation, Social Engagement and Wellbeing Music forms a core part of the social life and cultural identity of many young adults (McFerran, 2020) including those on the autism spectrum (Allen, Hill, & Heaton, 2009; Heaton, 2003). Participation in community music activities is associated with perceived positive wellbeing in Australian adults, particularly group-based activities where people feel socially connected to others (Krause, North, & Davidson, 2019). Music therapy research also emphasizes the importance of shared moments of pleasure within creative group experiences for young people, along with validation of their identity from peers (McFerran, 2020). As such, music experiences have also been widely recognized as supporting the mental health and wellbeing of adolescents and young adults, both in the general population and people with disability (McFerran, 2020; Wilson & MacDonald, 2019). Further, neuroscientists have documented music’s influence on human emotions, finding that music-making can intensify social bonding and affiliation (Molnar-Szakacs et al., 2009; Peretz, 2019). Particularly, singing and active music-making in groups is more effective in promoting social cohesion than listening to music (Peretz, 2019). This acknowledgement of the benefits gained from more active forms of music participation points to the important role that creativity plays in group social experiences and the potential flow-on benefits for enhanced wellbeing. Creativity in music making draws upon core features of human communication such as rhythmicity and predicable narrative form. These basic music potentials, or proto-musicality, are present in day-to-day acts of self-expression in all human beings from birth (Malloch, 2000; Malloch & Trevarthen, 2018; Roginsky & Elefant, 2020). As such, success in sharing aesthetically elaborated forms of self-expression is a benchmark for creativity that can be universally accessed since proto-musicality is a born potential that is present across the spectrum of neurodiversity (Roginsky & Elefant, 2020). Opportunities for distributed creativity (Burnard & Dragovic, 2015), as well as for dynamic engagement with culture (Wright & Pascoe, 2015) may also promote connections between creativity and wellbeing. Group music-making is therefore a potentially powerful way to address the double-empathy issue and foster acceptance of autistic humanity, as it can provide an opportunity for these connections between creativity and wellbeing to be accessible to autistic participants. The majority of music therapy research with autistic people has focused on developmental benefits for autistic children (Geretsegger, Elefant, Mössler & Gold, 2014) such as supporting Autism-friendly music-making workshops Thompson, Raine, Hayward, & Kilpatrick www.internationaljournalofwellbeing.org 120 relational outcomes (Carpente, 2017; Thompson, 2017) and social communication skills (Kim, Wigram, & Gold, 2008; Thompson, McFerran, & Gold, 2013). Only a few studies have focused on evaluating the benefits of group music making for autistic adults. Preliminary findings from a Canadian pilot study with eight autistic adults found that participants reported less anxiety during a singing group compared to other activities (Young, 2020). Research exploring a group music skills program in the USA for 22 autistic adolescents and young adults found numerous self-reported social and wellbeing benefits including reduced anxiety, increased self-esteem and more positive attitudes toward peers (Hillier, Greher, Poto, & Dougherty, 2012). However, while it is promising that autistic individuals report positive benefits from these music programs, the emphasis appears to be on boosting the capacities of the autistic person rather than addressing broader societal attitudes, which may reflect an ableist view of appropriate social norms (Campbell, 2009). An alternative approach to improving access to community music events is the development of “sensory friendly concerts” (Shiloh & LaGasse, 2014). These community events, often coordinated by music therapists and/or community arts organisations, seek to create an informal atmosphere and adapt the environment of the venue. Autistic people attending these events have described feeling more accepted by the community and more confident to express their autistic identity (Shiloh & LaGasse, 2014). Organizers of sensory-friendly events typically consult and partner with autistic people to ensure access requirements are well understood; i.e., they employ a co-design approach. Co-Design and Participatory Research Approaches The Australian National Health and Medical Research Council (2016) acknowledges that consumer and community involvement in the design of research projects enhances the value of the project outcomes. Systematic reviews (Greenhalgh et al., 2019) and discussion papers (Locock & Boaz, 2019) about co-design research suggest that no single approach or framework holds the key to success2. Greenhalgh at al. (2019) produced a taxonomy that consolidates the prolific and diverse approaches to co-design in the interests of clarifying their shared strengths. However, Locock and Boaz (2019) argue that in order to “avoid constructing people as vulnerable participants rather than partners with agency”, co-design research must “move beyond tokenism and overcome the gap between language and practice” (Locock & Boaz, 2019, p. 416 & 418). Identifying and bridging gaps between thought processes and conceptual differences between researchers and community members is therefore central to successful co-design (Greenhalgh et al., 2019; Parsons, Fisher, & Nalau, 2016). Research teams are encouraged to deeply consider their intentions and the purpose of engaging in co-design principles to determine which approach will be the best fit for the local context (Greenhalgh et al., 2019). Co-design research involving autistic people highlights the importance of establishing trust, supporting diverse communication, and addressing power dynamics to ensure meaningful processes and outputs (Scott-Barrett, Cebula, & Florian, 2019). Parsons et al. (2016) provide perspectives on co-design in Indigenous communities that emphasize some important advantages that might also be relevant when engaging autistic young adults in research. They report that indigenous participants drew attention to the colonialist ideals embedded in some of the concepts being utilized by researchers. When applying this notion to participants with lived experience, there may be real benefits to engaging with perspectives that challenge problematic assumptions in the research framework, such as the imposition of “neurotypical” (i.e., non- 2 While the incorporation of first-person perspectives into co-design processes is generally considered to be important, how lived experience interacts with co-construction approaches is not currently well understood (Osborne et al., 2016). Autism-friendly music-making workshops Thompson, Raine, Hayward, & Kilpatrick www.internationaljournalofwellbeing.org 121 autistic) standards of socializing and communication. In response to these dynamic social justice principles, we embarked upon a co-design project by bringing together a research team comprizing autistic and non-autistic academics, and an advisory group that included autistic young adults and autism advocates. Purpose Statement Burnard and Dragovic (2015) observe that the context in which creative collaborations are undertaken has a powerful influence on their value to the participants. This contextual perspective underscores the importance of community consultation to ensure that the potential benefits to wellbeing are appropriate for the participant community. This paper reports on our community consultation phase that aimed to gather the perspectives of autistic young adults living in Victoria, Australia. We sought to better understand whether music-making workshops would be a feasible way to address the previously reported social and wellbeing needs of the autistic community in the region where these workshops would later be offered. Information about how autistic young adults use music in their everyday life, what might motivate them to join a music-making workshop, and what they believe would improve access and engagement were gathered through a collaboratively designed online survey and interview guide. Method Co-Design Approach to Developing the Survey and Interview Questions Our academic team includes autistic, disabled and non-autistic researchers with backgrounds in Psychology, Music Therapy, and Arts. We also invited young autistic adults to join an advisory group, since this age group would ultimately be invited to participate in the music workshops. The academic team created a first draft of the online survey questions to meet the research aims and then engaged with our three autistic advisors aged 18 to 24 years who reviewed the content, language, and formatting of survey questions. In addition, we took advice from the information manager of the autism peak body in Victoria, Australia, and a program coordinator of a community group for autistic young people. The wording and order of several survey questions were modified in an iterative way following this consultation period, with some questions removed and others added. Participants (Online Survey) Autistic people aged between 18 and 25 years living in the state of Victoria, Australia were invited to participate in an online survey advertized through local autism services and community groups via their social media pages, websites and eNewsletters. In keeping with our co-design aim, the survey was advertized as a call to “help us design autism-friendly music workshops”. We limited the sample to the age group we intended to target in the subsequent study to increase the likelihood that the data will be relevant to phase 2 of this project. Similarly, survey participation was limited to people residing in the state where the music-making workshops would later be conducted. Thirty young people (M age in years=19.93; SD=2.02) responded to the 22 survey questions. Of these, 12 (40%) identified as men, 12 (40%) as women, and 6 (20%) as other gender identities (transgender, gender-neutral, or gender queer). The majority of participants (26; 87%) resided in a metropolitan area and had completed 12 or more years of education. All participants had an autism spectrum diagnosis, and many reported an additional diagnosis such as depression (19; 63%), anxiety (16; 53%), and attention deficit hyperactivity disorder (12; 40%). See Table 1 for more detail. Autism-friendly music-making workshops Thompson, Raine, Hayward, & Kilpatrick www.internationaljournalofwellbeing.org 122 Participants (Follow-up Interviews) At the end of the online survey, participants were asked to voluntarily participate in a follow-up interview by providing their contact details. Ten people (33%) volunteered, and of these five (17%) made appointments when invitations were sent via email. The age of these five interviewed participants ranged from 18 to 23 years (M age in years=20.0; SD=2.0), and included two people who identified as men, two who identified as non-binary, and one who identified as a woman (see Table 2 for more detail). Interviews were conducted on the phone or via the video conferencing platform Zoom. With permission, all interviews were video and audio recorded. Materials Survey The survey consisted of 22 questions and included multiple choice, Likert scale items and free text options. The first 10 questions collected demographic information, questions 11 to 14 inquired about participants’ use of music in their everyday life, and questions 15 to 22 invited participants to contribute their perspective on the design of the music workshops such as their preference for music activities, environmental considerations, access requirements, or any other considerations (see Appendix 1). Interview Five interview questions were constructed to align with the survey questions related to the design of the music workshops. While the interview questions were structured, we intended to seek deeper responses to these questions and gently prompt for more information (see Appendix 2). We emphasized to participants that their responses would directly impact the design of the music workshops planned in the second stage of the research. Ethics This project was approved by the Human Research Ethics Committee at The University of Melbourne (ID no. 1955735.1). Online survey participants provided their consent by clicking to commence the survey after reading the project information on the opening screen. All survey responses were anonymous. Interview participants were sent a Plain Language Statement via email and provided signed consent prior to the interview taking place. Transcribed interviews were anonymized, and each participant was assigned a code for reference. Survey Data The online survey was open during March and April 20203. All multiple choice and Likert scale questions are reported descriptively in the form of percentages and rankings. 3Data collection took place during the COVID-19 pandemic, where social restrictions were in place in this community. Autism-friendly music-making workshops Thompson, Raine, Hayward, & Kilpatrick www.internationaljournalofwellbeing.org 123 Table 1 Online survey participant data Characteristics Sample group (N=30) Age: years, M (SD) 19.93 (2.02) Gender Male, n (%) 12 (40) Female, n (%) 12 (40) Transgender, n (%) 1 (3.3) Gender neutral, n (%) 2 (6.7) Gender queer, n (%) 1 (3.3) Other1, n (%) 2 (6.6) Geographical location Victoria: Melbourne metropolitan area, n (%) 26 (86.7) Victoria: outside of metropolitan area, n (%) 4 (13.3) Highest level of education Bachelor degree or higher, n (%) 3 (10.0) Diploma / Advanced Diploma, n (%) 2 (6.7) Year 12 / Victorian Cert. Education / TAFE Cert. III or IV, n (%) 15 (50.0) Year 10 / School Cert. / TAFE Cert. I or II, n (%) 7 (23.3)