Music Therapist, BLENNZ Homai Campus School, Auckland. Erin Upjohn-Beatson, MMus Ther, NZ RMTh. Freelance Music Therapist, Wellington. ABSTRACT.
(2015). New Zealand Journal of Music Therapy, 13, pp. 8-32 Music Therapy New Zealand
Music therapy with people who have Autism Spectrum Disorder – Current practice in New Zealand Daphne Rickson, PhD, LTCL, MHealSc(MenH), MMus Ther, NZ RMTh Senior Lecturer, Te Kōkī, New Zealand School of Music, Victoria University of Wellington, New Zealand Claire Molyneux, MA (Music Therapy), BA (Hons), PGCertHealSc (Adv Psychotherapy Practice), NZ RMTh Private practice, Auckland and Hospice West Auckland Helen Ridley, MMus Ther, MMgt(dispute resolution), GradDipDispRes, MEd(Hons)(Adult Ed), BMus(Hons), Cert. Supervision, NZ RMTh Freelance Music Therapist and Mediator, New Zealand Ajay Castelino, MMus Ther, LLCM (TD), BE (Hons), NZ RMTh Music Therapist, BLENNZ Homai Campus School, Auckland Erin Upjohn-Beatson, MMus Ther, NZ RMTh Freelance Music Therapist, Wellington ABSTRACT This paper describes contemporary music therapy practice with children and young people who have Autism Spectrum Disorder (ASD) within New Zealand. Currently very little is known about the numbers of children and adolescents with ASD who are receiving music therapy in New Zealand, their goals, or outcome measures. Our paper draws on the results of an exploratory study which aimed to gather information regarding the practice of music therapy with children who have ASD in New Zealand, in order to scope and design research appropriate for the New Zealand context. Because the field is small, we also included information regarding music therapy work with adults who have ASD when it was offered. Music therapists agree that a variety of evidence is needed to underpin the practice of music therapy. However we found
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that opportunities for experimental research in this context are limited by paucity and heterogeneity of practice. KEYWORDS Music therapy; autism spectrum disorder; New Zealand; music therapy research; music therapy practice
Introduction Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterised by persistent deficits in two core domains of social communication or social interaction; and restricted and repetitive behaviours, interests or activities (APA, 2013). It usually manifests in early childhood and persists throughout life (APA, 2013), and in New Zealand affects the lives of over 40,000 people and their families (Autism NZ, 2014). Children with ASD often have a unique attraction to music and may have special musical abilities (Carpente & LaGasse, 2015) especially with regard to pitch perception (Heaton, 2004). Internationally, work with children who have ASD is a major area for practice in music therapy; arguably it is the client group with which music therapy has the highest reputation (Dimitriadis & Smeijsters, 2010). A relatively large body of literature describes music therapists using a wide range of approaches to address an array of ASD symptoms (Carpente & LaGasse, 2015). In a recent survey of 328 professional members of the American Music Therapy Association (Kern, Rivera, Chandler, & Humpal, 2013) 27.3% of respondents indicated that between a quarter and one-half of their clients had Autism Spectrum Disorder. In a further analysis of ASD studies, mostly from the United States, Carlon, Stephenson, and Carter (2014) found that approximately a quarter of all parents of children with ASD favoured music therapy as an intervention. Music therapy is considered to be particularly helpful to support the development of social interaction and communication skills in this population (Gattino, Santos, Longo, Loguercio, & Faccini, 2011; Gold, Wigram, & Elefant, 2006; Kim, Wigram, & Gold, 2008; Thompson, 9
McFerran, & Gold, 2013). While the results of Gattino et al’s (2011) randomised control study to investigate the effects of music therapy on communication were inclusive overall, there was a statistically significant difference on the aspect of non-verbal communication. Similarly, Thompson, McFerran, and Gold (2013) found that familycentred music therapy led to improvements in social interactions in the home and community and the parent–child relationship, but not in language skills or general social responsiveness.
Methods Methodology The goal of exploratory research is to discover ideas and insights, to find out ‘what is going on here’. The aim is to generate a grounded theory, hypothesis and/or design for future research (Stebbins, 2001). We employed a convergent parallel mixed methods design which included (1) an online survey which enabled us to obtain demographic data from as many people as possible, and to recruit participants for interviews, and (2) a more in-depth exploration of issues via openended interviews. Data were analysed separately and integrated at the point of report writing.
Recruitment Music Therapy New Zealand (MThNZ) disseminated information about the study and invited all registered music therapists to participate in an online survey. The 29 survey respondents represented almost 50% of eligible participants. At the end of the survey, music therapists were asked to inform other professionals and parents who work with music therapists and children with ASD about the study, and to invite them to express interest in participating in interviews.
Survey Participants Survey respondents comprised an equal spread of recent graduates, those who had been practising between 4 and 10 years, and those who had practised for more than 10 years. The majority of respondents were 10
from Wellington and Auckland. The number of people with ASD currently receiving music therapy from survey respondents is estimated to be 150 children and 30 adults. 18 16 14 12 10 8 6 4
2 0 1 to 5 6 to 10 11 to 15 More that 15 people with people with people with people with ASD ASD ASD ASD Individually
In groups
Figure 1: Numbers of music therapist respondents working with people with ASD
160 140 120 100 80 60
40 20 0 Children
Adults
Figure 2: Estimated number of people receiving music therapy from respondents
Interviewees Twenty-four (24) people (13 music therapists, eight parents, and three stakeholders) expressed interest and gave informed consent to be interviewed individually or in one of four focus groups. Stakeholders included a therapist from another field working with children who have 11
ASD in music, and two people who have both been members of the ASD guidelines group, and have significant research, education and/or managerial experience working with people who have ASD.
Interview methods and analysis Interviews were semi-structured, and in-depth, with interviewers guiding the interviews by asking relatively specific but open-ended questions. All interviews were audio-recorded and transcribed in full. Interview and focus group data were analysed using thematic analysis procedures (Braun & Clarke, 2006). Braun and Clarke describe six major steps in their thematic analysis process, specifically: becoming familiar with the data; generating initial codes; searching for themes; reviewing themes; and defining and naming themes. Four interviewers (coresearchers) transcribed interviews, reviewed them with participants, and returned them to the primary investigator (PI) with initial coding and margin notes. The PI combined the data and sorted according to initial codes; reviewed the codes, and renamed, combined, and developed new codes after checking with interviewers; examined each category and applied secondary coding with descriptions; met with interviewers to review, revise, and agree on secondary coding; developed themes (ideas generated by several participants), exceptions (ideas mentioned by only one person), concepts (combinations of ideas), and stories (examples from practice); and reproduced themes, exceptions and concepts in the form of findings.
Ethics statements Approval for this study was granted by the Victoria University of Wellington Human Ethics Committee (Ref: 0000021142). Informed consent in writing was obtained from all individuals participating in this study. Real names have been changed.
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Findings and Discussion The results are a combination of survey and interview data.
Music therapy referrals and assessments The largest number of survey respondents, by far, work in private practice and in school settings (see figure 3).
Community Facility 8%
Other 7% Private practice 34%
DHB 7%
Music therapy centre 8%
Schools 36% Figure 3: Music therapists’ work contexts
The context in which music therapists work naturally has an influence on the ways referrals are made, and by whom. The origins of the referrals are summarized in figure 4. Survey data suggested speech and language therapists were the most frequent referrers. Interviewees observed that referrals are often generated when someone who has witnessed a session suggests that music therapy might be helpful for another particular person: I think a lot of it is word of mouth. Or somebody has watched a session, and … has I guess developed an understanding of music therapy that way. Yeah, there is a lot of that. Once, I 13
guess, an allied health professional, or someone has sat in on a session … then they talk to their colleague and go ‘well maybe for that student, music therapy might be a good approach.
% 80 70
60 50 40 30 20 10
0 Self referral
Family member
School
Other Other institution professional
Other
Figure 4: Origins of music therapy referrals
‘Interest in music’ was the most cited reason for referring a child with ASD to a music therapist. Other reasons include anxiety; the development of curiosity/motivation; relationship skills; sustained and joint attention; communication; social interaction; behavioural needs; emotional development; failure to thrive at school; supporting transition; and having fun. Interviewees suggested music therapy is sometimes considered to be the ‘last attempt’ to intervene; an opportunity to ‘reach’ someone when other therapies have been unsuccessful. The process of deciding what to focus on involves listening to what people think is important, aligning their wishes with what has already been documented e.g. in the learners’ individual education plan (IEP) and with broader guidelines such as the Ministry of Education’s Key Competencies 1 (Ministry of Education, 2007).
1. ‘Key Competencies’ are defined by the Ministry of Education as “the capabilities people have, and need to develop, to live and learn today and in the future” (2014, http://nzcurriculum.tki.org.nz/Key-competencies). The Key Competencies encompass knowledge, skills, attitudes, and values and help teachers to identify and strengthen students' capacity to participate in the world.
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Focus of music therapy programmes Music therapists talked about the need to do specific music therapy assessments, usually over six to ten sessions, to help decide whether music therapy is the appropriate medium for this person, whether group or individual work is needed, to determine goals, and/or whether the way a child interacts in music therapy can contribute to a diagnostic picture. Music therapy programmes focus on a range of goals. These are summarised in figure 5, below. Communication and social skills are the most common areas of focus. Emotional expression Engagement Independence Key Competencies Wellbeing Interaction Resourcing families Creativity Mood regulation Speech Participation Anxiety Sensory integration Inclusion Relationships
Social skills Communication 0
5
10
15
20
Figure 5: Areas of focus for music therapy
Communication is a complex concept that encompasses many forms of interaction. Interviewees talked directly about focusing on specific communication modes such as facilitating speech or emotional expression. Others simply said that communication was a focus for them, and variously mentioned aspects that they might work on. For example they mentioned supporting participants to develop skills related to receptive communication such as listening, attending (including shared attention), concentrating, and engaging; facilitating 15
non-verbal expressive communication such as vocalisation and creative musical expression; fostering verbal expression through singing and speech; and promoting the development of language. Increasing interaction and participation were specifically mentioned as a foci for programmes, with the development of motivation, expressive communication, turn-taking, play skills, and building relationships as aspects of that. Developing relationships was another frequently cited focus. Interviewees emphasised the importance of the participant and therapist relationship, but also talked about helping people with ASD to improve their communication skills specifically so they might make or maintain friendships with peers; be able to engage in meaningful activity with others; and develop social networks. The focus of music therapy can be to develop independence, or to develop relationships with people other than family members. Families can be resourced to engage with children who have ASD, to rehearse specific strategies with them outside of the session (e.g. working on oromotor skills), or to give family members time out. Like 'communication', 'social skills' is a broad category mentioned frequently by interviewees as a focus for their music therapy programmes. Developing an awareness of others and their needs, listening, engaging, participating, sharing, turn-taking, cooperating, and developing confidence were subcategories that have maintained importance in music therapy work: Tolerating others is the beginning point for interaction, engagement, connection, and intimacy. Some described working on social skills or developing confidence, with the ultimate aim that their participants could be included with peers. They argued that connecting with the musical culture of peers and sharing musical skills or knowledge were powerful inclusive strategies. Another broad category, ‘music therapy to support wellbeing or quality of life’, was also underpinned by foci on 'meaningful activity' and 'inclusion'. Facilitating their participants' inclusion, mostly in school communities, seems to be a big focus for interviewees.
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Sensory issues, or sensory integration seems to be an important focus for music therapy too. Interviewees suggested that music therapy is helpful because participants can be in control of sound-making, and increase their tolerance for unexpected sound and for being with others (who may be unpredictably noisy). Several interviewees related their work to the New Zealand Curriculum 'Key Competencies', specifically the categories of communication, participating and contributing, thinking, managing self, and using language symbols and text. Only one person talked specifically about working on goals directly drawn from IEPs. Another was encouraged to work on goals devised by the multi-disciplinary team but found that inhibiting, preferring to “see where the (music therapy) takes us”. Finally, at least one music therapist resisted having any specific ongoing goals at all: I think I like to have quite open-ended goals if you call them that … and some of them can be musical ones and some of them can be things like 'staying in the room'. And not to have a quantitative goal like: 'we'll try to stay in the room for five minutes today' but just 'we'll try and stay in the room and we'll just keep a note of what happens week by week' or 'we'll try and expand the range of instruments and objects, and styles of play' but not to say ‘Oh we're going to play the drum, the cymbal and the xylophone’ but to have a rich selection of things that we could do and recording what happens.
Regularity of sessions, length of programmes Ninety-five percent of survey respondents offer weekly sessions. Programmes, especially private work, are predominantly ‘open ended’, and long term, i.e. for one or more years. Decisions regarding closure are predominantly made by the music therapists, but often in collaboration with institutions and families. Time frames of sessions, as well as lengths of programmes, are adapted to accommodate the therapeutic needs of participants. Frequently the context in which
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therapy takes place (e.g. school year timetable) and funding constraints will be a deciding factor regarding when programmes close.
Group, individual, and family therapy Music therapists described facilitating individual, group, and family music therapy work, according to the needs of their participants. From survey responses we can determine that the majority (66%) engage in individual work with one to five clients with ASD, while almost half also reported working with children with ASD in a group setting. Most groups will comprise of four or five participants, but will often typically include developing children, children who have another diagnosis, family members, or ‘others’. Only nine music therapists reported working with groups that include more than one person with ASD. Group work was thought to be particularly helpful to address peer or family relationship issues. Interviewees outlined several reasons why children might benefit from individual sessions before joining group work: if they experienced auditory sensitivity, were very easily distracted, or needed to develop more awareness of self and other. However, group work can be particularly important when the focus of the therapy is on the development of social skills. Groups often include children with considerably diverse needs, however, and often several adults will be present. Interviewees recognised that this diversity presents significant clinical challenges in terms of responding to individual needs, especially in terms of timing, pacing, and adapting music. Smaller groups are therefore preferred, with one respondent noting that group work tends not to work well unless a highly structured approach is employed. Taking a structured, focused and planned approach was considered to be important when working with children with ASD overall, but especially with larger groups. However, interviewees recognised that while structure and routine can be important, 'rigid' expectations that people with ASD will be able to adhere to typical social norms can be unrealistic. They noted that music therapy can provide a balance of structure and freedom, as dictated by the child's needs.
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14 12 10 8 6 4 2 0 Family members
Other clients with ASD
Other clients with Peers without different identified needs/diagnoses additional needs/ diagnoses
Other
Figure 6: Whom people with ASD work with in music therapy groups
Almost all survey respondents (27) reported having family present in sessions for some or all of the time, and the majority also describe working collaboratively with other team members (23). However, survey respondents took a broad view of the term ‘collaboration’ citing activities from sharing reports, having parents and other professionals observe and/or participate in sessions, supporting interactions between siblings and classmates, to empowering others to facilitate music sessions. Teachers, teachers’ aides and other staff members were frequently cited as group participants. Interviewees offered various reflections on family involvement in sessions. Firstly, they suggested children’s music therapy groups can provide helpful opportunities for parents to meet other parents who might be having similar experiences. However, music therapists can find it hard balancing the value of working with the family with the needs of a child when, for example, the child seems happier and more engaged in the process on their own. They noted that when parents are involved, children present differently and can be disadvantaged in terms of their developing independence. Some music therapists seemed satisfied with communicating their intentions and actions to the family, and asking for feedback regarding the perceived impact of the music therapy intervention. However, it was also acknowledged that 19
communicating regularly face-to-face with families can be difficult, especially when music therapy sessions are taking place in schools. Families who have children with special needs are very busy, and often tired. Some music therapists therefore utilise resources such as homeschool communication diaries to keep in touch. Conversely, it was argued that the therapist needs to be aware of the fundamental and ongoing nature of the child's relationship with the parent – something that can only be understood in the context of ongoing interaction. Further, some music therapists felt that it was important for families to understand the music therapy process and that this would only occur if they were thoroughly involved. Others see the music therapy session as an important opportunity for meaningful family interaction, such as having fun together. Parents also reflect on their own needs as well of those of their children when considering whether to attend sessions. One said she values having a ‘break’ from her child, and would prefer not to attend; another said that she would only attend a session if her child invited her to.
Music therapy approaches Survey respondents suggested their work is, relatively evenly, predominantly informed by creative, psychodynamic, improvisational music therapy theory, and that they engage with ‘client-centred’ (also known as person-centred or humanistic) and 'community music therapy’ approaches. Interviewees also referred to medical, behavioural, creative, relationship-based, and music-centred approaches. Some were unspecific, and/or named the theories they drew on rather than naming a specific music therapy approach, and many identified with more than one approach because they were working across contexts that demanded different ways of working. Interviewees resoundingly reinforced the centrality of the therapeutic relationship in music therapy practice, and their narrative explanations highlighted a humanistic approach as dominant. Strong humanistic (sometimes referred to as person-centred or client-centred) and holistic values were emphasised during interviews. Respondents value being ‘with’, in the moment, and developing a caring, respectful, 20
intimate, and creative environment in which people can share meaningful experiences and grow: You can just be together in music, so it comes back to that relationship for me, about the therapist creating that environment where a person can tolerate and be challenged, in a musical or sound way. And through that, in a sense, a trusting rapport is developed. And along the line you can actually work specifically towards developing certain interactions or certain communications, interpersonal communication. The ability to take a flexible approach, to respond to the varying needs of participants in the moment and to construct the process together, is highly valued. Interviewees linked flexibility with empowerment and the potential for people with ASD to ‘open up’ and to show their abilities and potential within the context of the therapeutic relationship: I believe that humans are intrinsically musical and … I’ve got a humanist philosophy about accepting everybody where they are, respecting and valuing each individual and their uniqueness, believing in the possibility of growth and the importance of self-expression, creativity, self-esteem, choice, relating to others, experiencing success and independence. I think music is a really powerful tool to connect with people and motivate people to be involved.” While many music therapists might use improvisation in their work, some also referred to an ‘improvisatory approach’ or working with an ‘improvisatory model’. Interviewees noted how the principles of humanistic philosophy can be enacted in music-making, arguing that flexibility in the music, the potential to adapt, compose, and improvise in the moment is crucial, because it is the way music and its elements are used in relation to vitality affects and attunement that makes music therapy unique. Several interviewees suggested they employed a ‘music-centred’ approach:
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It's not about music as an object or an artefact or a song, it's about music, it's about musicking 2 and about what we do to make the experience of being part of the music really come alive. In contrast, others talked about music and/or the elements of music being a ‘tool’ for therapy, and the importance of developing underlying techniques in the use of music in therapy. Music therapists indicated that they were working with participants in multiple environments including homes, classrooms, and community settings. Thus they linked their work to community music therapy (CoMT), which focuses on resourcing not only the child but their wider cultural, institutional, and social contexts. The community music therapy approach is exemplified by therapists who describe helping children to settle in the classroom and working with staff to encourage the use of music therapy strategies across contexts. However, while it was deemed important to consider the participant in context, music therapists also seemed to value the music therapy session as an opportunity to give children, their parents and other team members a 'break' from the challenges associated with other environments. Their predominant emphasis was on ‘linking’ music therapy to other aspects of participants' lives, by having peers in the music session, taking artefacts from the music room to the classroom, and ensuring the music that is familiar is used across contexts, rather than working within, or developing other programmes outside of the music therapy room. It seems though that some music therapists move quite readily between contrasting community music therapy and psychotherapeutic approaches: When we’re working with a group, I think you kind of have more of a community music therapy hat on because you’re thinking of the context that the child is within. And also helping the other children to understand how they can play with that particular student. And then at the same time, the very next
2. Small (1998) coined the phrase ‘musicking’ to emphasise that music is not a ‘thing’ (noun) but an activity. Meaning is generated through the process of producing and engaging in music.
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week, you’re working in more of a psychotherapeutic music therapy approach, where it’s very individual, and you’re working sort of on that level. So, I feel like it’s a very fluid … movement between different approaches. But I guess at the centre of it is … what’s important for that child at that particular time. How do I need to work with this child, at this … in this moment? Music therapy programmes are based on participant’s strengths, interests and needs, and a variety of individualised strategies and techniques are introduced to meet those needs and to cultivate potential. Some music therapists indicated that they employ behavioural strategies in their work, by considering behavioural antecedents and consequences, and introducing strategies to help children manage their behaviour. Moreover it seemed, to a relative extent, to be expected and/or desired by some parent interviewees. However, others suggested they would feel constrained by the high levels of structure and measurable outcomes that can be associated with behavioural approaches, and were concerned that behavioural approaches resulted in limited generalisability of behaviours. A holistic approach was generally preferred.
Music therapy experiences, activities, and tasks to meet goals Music therapists identified a variety of experiences, activities, and tasks that were used to meet specific goals or focus areas. In particular, improvisation was quoted as being an important way of connecting people and increasing interaction. Musical structure and repetition provide important nonverbal cues about when and how participants might contribute, and are therefore used to both contain and facilitate emotional expression and support emotional regulation; and in turn to support the development of turn-taking and other social skills. Interviewees suggested allowing participants to listen to familiar music, to be in control of sound-making, and/or to move to structured or free form music, can reduce anxiety. The use of instruments was cited as a way to engage in meaningful activity with others, develop relationships, and to promote inclusion. 23
The process of learning to play a musical instrument can promote reciprocal interaction, and provide opportunities for expressive communication. Singing is considered to be a highly engaging, expressive, and inclusive medium that can be used as an expressive or creative communication in its own right, or to support vocalisation and speech development. Music therapists also reported developing songs that can describe what their participants are doing, thus adding meaning or purpose to their activity, and/or providing language for what they are doing. Music therapy is used as a process to develop inclusion. Music therapists described supporting children with ASD to participate in music in their classrooms and, in at least one case, in assemblies. Facilitating classroom music allows music therapists to monitor and promote interaction, and to support participants to move from peripheral to full participation. Their classroom work is specifically focused on supporting learners with ASD to develop relationships and friendships with peers, by increasing their awareness of others’ needs, facilitating cooperation, connecting them with the musical culture of peers, and encouraging them to interact by sharing their musical knowledge and skill (increasingly with the use of audio or video technology). Interviewees also suggested that they use music to support learners to engage in school routines and manage activities of daily living.
Evaluation A wide variety of evaluation tools and techniques were mentioned during interviews, but often by only one person. This included ‘monitoring sheets’, therapist-created evaluation forms, adapting existing evaluation tools, measuring against child development charts, using the Key Competencies as a guide, and creating ‘records of learning’. Despite this diversity, it was clear that music therapists generally prefer to write descriptive evaluations based on their observations and interpretations of sessions. They usually record their observations in note form after every session, and argued that – over time – they can generate a clear picture of progress. Sometimes session notes are shared immediately with parents and/or other team members, 24
but more often a longer period would be summarised in report form for stakeholders. Information received from parents and other team members is considered to be an important part of the evaluation process, and their feedback is often incorporated into music therapy reports. Comparing a child’s responses in the classroom with those in a music therapy setting for example, can be helpful for understanding their needs. The value of parental involvement in the review process was described two-fold: it helps the therapist to gain a comparative understanding of a child’s presentation, and enables parents to gain further understanding of music therapy processes. Video seems to be one of the most frequently used evaluation tools, and it is valued because it enables practitioners to review sessions, to observe change over time, and to provide more objective reports in writing. However, reviewing video and finding words to describe therapeutic processes can be time-consuming. It can therefore be helpful for team members to view the video themselves, in order to get a more accurate picture of what is happening. One parent reported that receiving weekly session notes was valuable for increasing their confidence in music therapy, but seeing a video was even more helpful. Interviewees argued that demonstrating the music therapy process, either live or on video, can be a powerful tool for convincing people of the efficacy of the approach. Nevertheless, while music therapy ‘speaks for itself’ when viewed on video, what it is, how it works, and why it ‘works' need to be clearly articulated to help parents and other professionals understand processes and outcomes. Regardless of how the music therapy process is captured, interviewees communicated a relatively strong message that it was not easy to measure or communicate the ways in which music therapy participants ‘progressed’. They suggested that progress can look different for various people, be slow, hard to pinpoint, and difficult to quantify; and it can be difficult to communicate what a little progress can mean in a child’s life. Music therapists are very concerned, as are parents, with the issue of generalisability. However, interviewees noted that it can be difficult for children to generalise skills and/or behaviours that have been developed within a specific therapeutic relationship. The gains 25
made in music therapy cannot always be demonstrated in the classroom, for example. In contrast, interviewees also argued that comparative data across settings can help determine the value of music therapy programmes. Teachers for example have been known to articulate ‘huge benefits’ of music therapy because they observe children demonstrating new and positive behaviours in the music therapy setting. And a parent who was able to see video of her child across settings was convinced that music therapy had significantly contributed to his developing social skills: You’ve seen it in music therapy, and you’ve taken it outside of music therapy to introduce in other environments. And that’s … huge. Absolutely huge. Because it’s a big social skill to be able to interact with others, and be included to society, so … hugely valuable. But until I had seen the video of him, I couldn’t measure it myself. There’s no way.
Closing programmes It was argued that the needs of participants should dictate when music therapy programmes finish, which suggests that a final assessment would be necessary to determine whether the participants' needs had been met. However, it seems that there are a variety of reasons why music therapists are often unable to undertake formal assessments at this time, or might choose to close programmes when participants might still have significant needs. Most obviously there are occasions when programmes close suddenly and it is not possible to gather end of treatment data. Some music therapists are required to ‘turn over’ people on their caseloads to accommodate waitlisted potential participants. Some programmes are voluntary and participants choose not to return, or the therapist might consider they have simply ‘gone as far as they can’. In contrast, programmes might continue when progress is not evident due to the belief that it can be slow and hard to observe. Interviewees intimated that they use their professional judgement regarding the value of music therapy for participants, regardless of whether they are making progress. 26
Accessing music therapy Interviewees believed there is a lack of awareness and understanding of music therapy and what it can offer people with ASD, and that this can affect both access and ongoing service provision. Music therapists recognise the need to 'market' their service to target groups who support people with ASD, yet feel restricted by time limitations and their paucity of experience in the marketing field. They also argued that it can be hard to communicate to other professionals and interested parties about 'how music therapy works’ when music therapy processes, especially those involving improvisation, are unique and complex. There was general agreement that increased awareness and understanding can be promoted by talking to colleagues, sharing information through conference presentations, facilitating music therapy workshops in the community, the presence of music therapy students, official sources such as MThNZ website, and when schools enable student teachers to witness music therapy: You need to be proactive, and go ahead and have meetings with other professionals, you need to be out there, and … not just engaging with the music therapy community, but engaging with the speech and language therapy community, the Ministry of Ed, principals, families… Nevertheless, despite concerns about a general lack of awareness and understanding of music therapy, our findings suggest that the demand for music therapy for children who have ASD can exceed availability. In specific geographic locations there are examples where posts have not been filled, and/or there are insufficient music therapists to meet an increasing demand for service. On the other hand, there also appears to be a number of music therapists who want but are unable to get work in music therapy with clients with autism. In the context of private practice, they predominantly see this as related to poor education and promotion of music therapy in the community, so that they are unable to connect with those families that might want the service. However, in an institutional context, they generally see this as related to funding 27
issues. There is a perception that administrators and managers don’t know how to access funding for music therapy. And when institutions don’t have the funding, music therapists feel constrained in terms of how they might gain external funding for potential participants who are missing out. Lack of evidence is often cited as the reason for lack of support for music therapy. However, music therapy and other 'actionbased therapies' seem also to be perceived as expensive and luxurious interventions. When funding is short, ‘generalists’ (i.e. people who can provide a range of services) are seen as more cost efficient than specialists such as music therapists. When people with ASD were living in larger institutions or going to special schools they could more readily receive music therapy from music therapists employed by the institutions and schools. Managers and administrators who had experienced and/or valued music therapy would sometimes be able to 'find the money' to fund music therapy from existing budgets. Increasing deinstitutionalisation means institutions have less funding to run existing programmes, and music therapy positions in this context are decreasing. Resources are scarce, and there is not enough funding even for ‘mainstream’ programmes such as speech and language therapy. When competition for therapy funding is fierce and other professionals are also experiencing job insecurity, they are not likely to advocate for the inclusion of a music therapist on the team. Potential expansion of programmes is likely to be viewed as unrealistic: The amount of funding we get to actually run the service is minute compared to the demand. That’s our biggest barrier. I’d like to be doing lots of different things than we are doing at the moment. … So funding is the major, major issue. Our baseline funding … It’s tiny. And we’ve currently got 600 children on the waiting list. … That’s what I’m faced with every day. How do we provide the maximum possible service that we can with that level of resource? Music therapists are recognised as professionals who can provide a service for children who have ongoing difficulties, via the Ongoing Resource Scheme (ORS) – a Ministry of Education initiative. Children who 28
are ORS-funded are more likely to receive music therapy at school than those who are not. However, some schools use their funding more flexibly, and when music therapy is valued by the school, administrators will prioritise and find the money from somewhere in order to provide music therapy to others who need it. As well as seeking ORS funding for their work with children who have autism, music therapists seek philanthropic funds and engage in ‘fee for service’ models in which families pay. Our findings suggest that parents often value music therapy enough to pay for private sessions. It is important to note, too, that there is no pathway for ongoing music therapy funding once children leave school. Two interviewees suggested that while music therapy has the potential to support learning in adults with intellectual disability, it is easier to get services for younger people with ASD. The importance of early intervention was acknowledged but it was also argued that music therapy can be helpful throughout the lifespan, and it can be harder for potential participants to access services once they reach adulthood. People with intellectual disability are rarely financially independent.
Summary and Conclusion New Zealand music therapists, like their international counterparts, work with relatively high numbers of children who have ASD. Nevertheless, the actual numbers of music therapists and children are still low. The work mostly takes place in private practice or schools, in music rooms; programmes predominantly focus on supporting the children’s communication and social skills; and the dominant approach is humanistic and improvisational. Local music therapists value highly the flexibility to introduce what is needed, in the moment. The work is usually evaluated from descriptive data generated from naturalistic observations made by music therapists and other team members, including parents, and from video of music therapy sessions. The music therapists in our study generally believed it is not easy to measure or communicate the ways in which participants in music therapy progress, yet also put forward a strong argument that people 29
who witness music therapy in action develop more understanding and appreciation for what can be achieved, and can be readily convinced of its importance. Video data can be powerful for ‘telling stories’ of music therapy interaction, as well as the transfer of other benefits outside of the music therapy session, including inclusion. It is therefore a very promising potential data source for research. As well as evaluating participants’ individual progress, music therapists are particularly interested in how music therapy generalises to other settings, especially to promote inclusion in classrooms and other community environments. They note that their role includes working with families, and other team members, skill-sharing and resourcing them in their use of music. However, while our interviewees argued that parents of children with ASD need personal and practical resources to help them manage their parenting tasks, music therapists referred little to the ways music therapy might resource family and other team members to engage children with ASD in music. In summary, the New Zealand music therapists who participated in this study favour naturalistic, flexible, improvisational approaches when working with children who have ASD, which allow them to respond to the needs of their participants in the moment; the focus of their programmes can be broad; and evaluation is predominantly descriptive. While participants in our study agreed that a variety of evidence is needed to underpin the practice of music therapy, these findings suggest opportunities for experimental research in this context are limited by paucity and heterogeneity of practice. On the other hand, mixed methods would be a useful paradigm for music therapy research in the current New Zealand context.
Acknowledgement The authors gratefully acknowledge funding assistance for this research awarded by the IHC Foundation of New Zealand (http://www.ihcfoundation.org.nz/)
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References APA. (2013). Diagnostic and statistical manual of mental disorders (DSM-5). Arlington, VA: American Psychiatric Publishing. Autism NZ. (2014). What is Autism? What is Asperger Syndrome? Retrieved from http://www.autismnz.org.nz/about_autism. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative
Research in Psychology, 3(2), 77–101. Bruscia, K. E. (2001). Improvisation Assessment Profiles - Abridged Forum IAP
revisited (pp. 54-58): Retrieved May, 15, 2006 from http://hisf.no/njmt/forumiap.html. Carlon, S., Stephenson, J., & Carter, M. (2014). Parent reports of treatments and interventions used with children with autism spectrum disorders (ASD): A review of the literature. Australasian Journal of Special Education, 38(1), 63-90. doi:10.1017/jse.2014.4. Carpente, J. A., & LaGasse, A. B. (2015). Music therapy for children with autism spectrum disorder. In B. L. Wheeler (Ed.), Music therapy handbook. New York: The Guilford Press. Dimitriadis, T., & Smeijsters, H. (2010). Autistic spectrum disorder and music therapy: theory underpinning practice. Nordic Journal of Music Therapy,
20(2), 108–122. Gattino, G. S., Santos, Longo, D., Loguercio, & Faccini, L. S. (2011). Effects of relational music therapy on communication of children with autism: a randomized controlled study. Nordic Journal of Music Therapy, 20(2), 142–154. doi:10.1080/08098131.2011.566933. Gold, C., Wigram, T., & Elefant, C. (2006). Music therapy for autistic spectrum disorder. The Cochrane Database of Systematic Reviews 2006(2), Art. No: CD004381.pub004382. doi:004310.001002/14651858.CD14004381.pub.14651852. Gray, C. (1994). The new social story book. Arlington, TX: Future Horizons. Heaton, P. (2004). Interval and contour processing in autism. Journal of Autism
and Developmental Disorders, 35(6), 787–793. Kern, P., Rivera, N. R., Chandler, A., & Humpal, M. (2013). Music therapy services for individuals with Autism Spectrum Disorder: A survey of clinical practices and training needs. Journal of Music Therapy, 50(4), 274–303.
31
Kim, J., Wigram, T., & Gold, C. (2008). The effects of improvisational music therapy on joint attention behaviors in autistic children: A randomized controlled study. Journal of Autism and Developmental Disorders,
38(9), 1758–1766. doi:10.1007/s10803-008-0566-6. Ministry of Education. (2007). The New Zealand Curriculum. Wellington, NZ: Learning Media Ltd. Ministry of Education. (2015). Early childhood curriculum: Te Whāriki. Wellington: Learning Media Ltd. Moore, S. (2015). Music therapy advocacy for professional recognition: A historical perspective and future directions. Music Therapy
Perspectives, 33(1), 76–85. Nordoff, P., & Robbins, C. (2007). Creative Music Therapy (2nd ed.). New York: John Day. Ruud, E. (2010). Music therapy: A perspective from the humanities. Gilsum, New Hampshire: Barcelona Publishers. Small, C. (1998). Musicking: The meanings of performing and listening . Hanover: University Press of New England. Stebbins, R. A. (2001). Exploratory research in the social sciences. Thousand Oaks, CA: SAGE Publications. Taylor, D. B. (1997). Biomedical foundations of music as therapy. Saint Louis: MMB Music Inc. Thompson, G. A., McFerran, K. S., & Gold, C. (2013). Family-centred music therapy to promote social engagement in young children with severe autism spectrum disorder: A randomized controlled study. Child: care,
health and development, 40(6), 840–852.
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