Can you hear me? - Accessing the voice of the child with Autism and their parent

The aim of this paper is to access the voices of children with Autism Spectrum Disorders and their parents. This paper engages with philosophical conceptual frameworks exploring concepts of movement and engagement in eliciting child and parent voice. Qualitative, longitudinal case studies were conducted. Semi-structured interviews [n=83] were conducted with stakeholders including parents. Children with and without the label of Autism engaged in interventions drawing on the Creative Arts. Living autoethnography was considered a methodological tenet, establishing connectivity between life and research, self and others, providing a window through which the internal world of the parent was interpreted and understood. This research enabled children and parents to explore their worlds and deliberate on areas that affected their lives. The potential value for using the Creative Arts as a means of engaging children with Autism is discussed. Implications relating to movement [literal and metaphoric] and engagement are explored.***Você pode me ouvir? - Acessando a voz da criança com Autismo e seus pais***O objetivo deste artigo é acessar as vozes de crianças com Transtorno do Espectro Autista (TEA) e de seus pais. Este artigo aborda estruturas conceituais filosóficas que exploram conceitos de movimento e engajamento como forma de dar voz a crianças e pais. Estudos de caso qualitativos e longitudinais foram conduzidos. Entrevistas semiestruturadas [n = 83] foram realizadas com as partes interessadas, incluindo os pais. Crianças com e sem o diagnóstico de TEA envolveram-se em intervenções baseadas nas Artes Criativas. A autoetnografia viva foi considerada um princípio metodológico, estabelecendo conectividade entre a vida e a pesquisa, o eu e os outros, fornecendo uma janela através da qual o mundo interno dos pais foi interpretado e compreendido. Esta pesquisa permitiu que crianças e pais explorassem seus mundos e deliberassem sobre as áreas que afetaram suas vidas. O valor potencial do uso das Artes Criativas como meio de envolver as crianças com Autismo é discutido. Implicações relacionadas ao movimento [literal e metafórico] e engajamento são exploradas.Palavras-chave: Engajamento; Crianças com Autismo, Voz da criança; Voz dos pais; Inclusão, Movimento; Imitação; Teatro de Fantoches


Introduction
It is acknowledged in the literature that children with Autism frequently fail to initiate or reciprocate social actions and communicative behaviours similar to their peers and are frequently isolated due to these challenges. This may be further exacerbated by the emergence of asymmetrical relationships in the context of increasingly nuanced forms of language associated with later childhood.
It is possible to speculate that research focusing on children with Autism frequently objectifies them in terms of their cognitive, social or communicative deficits. Research focusing on parental experiences of parenting children with Autism range from their reactions to the diagnosis to their perceptions of their ability to parent their child effectively (Twomey & Shevlin, 2016).
Accessing the voice of children with Autism is a relatively new and emerging field which emphasises the importance of ascertaining their views on their lives. Equally the voice of the parent is rarely heard except when it pertains to their children's assessment and diagnosis and parents' reactions to these events. This paper seeks to capture the intricacies of how we can access the voice of the young nonverbal child with Autism. The voice of the parent is also considered.
Drawing from a review of the relevant literature this paper is structured around a discussion of the following central themes: the social and communicative challenges of young children with Autism, the role of movement and imitation, and creative approaches to accessing voice.

Background
Research dedicated to children's voice involves the positioning of a rights-based focus and the degree to which young children are included (United Nations Convention On The Rights of the Child, 1989 It is also possible to conceptualise voice as an expression of the child's agency where children are regarded as active agents and that they are included in research with them, not on them. Although child voice may be present, their voice may be understated and occasionally silent (Lewis, 2010). This research proposes that when children are nonverbal, the absence of audible voice should not preclude them from being heard. A child's ability to communicate, develop and learn should allow for voice to be articulated differently (Twomey, 2018 (Government of Ireland, 2014) highlights Early Intervention as a transformational goal and encourages parental involvement in assessment and decision making (Rose, Shevlin, Twomey & Zhao, 2017). Inclusion is regarded as a central tenet of Early Intervention and for the purposes of this article, inclusive education is seen as creating opportunities for all children's 3/13 participation in mainstream settings regardless of their differences (Johora, Fleer & Veresov, 2019).   (Dawson et al. 2002), it is thought that these children may engage socially in a nuanced way though it may be significantly differently to typically developing children (Kasari et al., 2011). It is widely accepted that Early Intervention provides optimal experiences for young children with Autism and addresses issues with social and communication development (Parsons et al. 2009). According to Bauminger and Schulman (2003) social engagement may develop but that it may be mediated by others. Hobson (1993) suggests that children with

Social and Communication Challenges in ASD
Autism have a disturbance in intersubjective engagement with others. Put more simply, Hobson emphasises the different patterns of relational or affective relations between children with Autism and others and that these may be considered core issues. Sterponi and Fasulo (2010) emphasise the role of intersubjectivity as essential to human sociability and communication.
The authors suggest that we need to investigate nonverbal modes of interaction that may illustrate intersubjectivity for children with ASD. Due to difficulties understanding and expressing embodied social actions and communicative behaviours, children with Autism frequently fail to exhibit social fluency and are hindered in their ability to develop relationships with peers.

Movement and Imitation
Considering the primacy of movement in the development of relationships, Hobson (2007) and Reddy (2008; explore what happens when a child is not moved in thought and feeling (Hobson, 2007 137) (literally and metaphorically) in response to another. According to Reddy (2008;  According to Baron-Cohen (1989)  Considering the use of creative methods and their suitability for children with ASD, this research adopted the use of puppetry in engaging young children with ASD. Traditionally puppets have been employed by various disciplines in clinical and community settings, and for children with ASD, some attention has been devoted to their use as a communication and instruction tool (Schrandt Buffington-Townsend & Poulson, 2009;Dwight-Salmon, 2005;Epstein et al., 2008;Salmon & Sainato, 2005). Puppets have been used as a medium for engagement but also to teach imitation and to improve social functioning (Escalona et al., 2002). Trimingham (2010, 25) drawing on Winnicott (1971) suggests that puppets may act as 'transitional objects' in a creative space. parents' experiences as that of journeys (Twomey & Shevlin, 2016). Parents' evolving identities and how this might be impacted during the trajectory of their child's assessment, diagnosis and early education experiences. Parents in this research were considered as nomads or warriors whose role they felt was to counter the state, occupying what Deleuze and Guattari (1986;1987) describe as the 'intermezzo' allowing us to think that the in-between space is of assessment, diagnosis and intervention is characterised by movement and change.
Living autoethnography was considered appropriate in terms of the author's positionality, as the researcher is a parent of a child with ASD.
This approach to parent voice provided a window through which the internal world of the parent was interpreted and understood (Ngunjiri, Hernandez & Chang, 2010).  (Graham & Fitzgerald, 2010). Listening to children's voices and encouraging them to actively participate was integral to the research design (Smith, Taylor & Gollop, 2000). An ethics-in-practice approach was continuously observed. Even when the child was unable to give informed consent, they were provided with opportunities for assent and dissent through the use of Objects of reference, PECS and simple Irish Sign Language. These efforts aimed to emphasise the voluntary nature of their inclusion (Lewis & Porter, 2007). Similar to Tozer (2003) children with ASD were provided with a 'stop' card and a 'change' card if familiar to them, to signal their ability to withdraw or discontinue when overwhelmed or unable to understand.

Ethics
For the purposes of this article, the following section will focus on the development of creative methodologies, which was considered one of the significant elements in this research.    'Facilitated engagement using puppet imitation'this involved the researcher conducting 1:1 imitation method between Alex and a puppet. The following section will present the findings relative to the research phases. doesn't ever want to co-operate" (P1, Phase 1).

Findings
"He will play there for hours" -Amy noted play as source of disconnect between her and Alex and explained that she had procured private play therapy to improve the parent child relationship.

Movement and Imitation
Prior to the research, Amy noted that Alex wouldn't look at her…. "Or play with his brother"… preferring to "stand alone in the school yard…" (P1, Phase 2) however during the period of the research, Amy felt that Alex was "included in the playground and always had other children, he was always included, he was included in drama and he was included in Physical Education". (P2, phase 2).

Phase 4 increased puppet directed activities and
invited the children to participate as puppeteers.
A real functioning microphone was introduced to add to their authenticity as researchers. When the microphone was introduced, the researcher noted Alex's fascination. His gaze averted towards the object, his fascination becoming apparent; its functionality was evident. Pretty Girl spoke through the microphone, encouraging paroxysms of delight.
Such was their excitement that the children including Alex began to run towards the puppets.
While children became actively engaged, dialogue with the puppets also provided a window into their conceptualisations of play, belonging and inclusion.

Discussion
The

Theme 2 Movement and imitation
Alex was engaging at a bodily level which would precede knowledge of another's mind (Baron-Cohen, 1989

Theme 3 Creative Methods to Accessing Voice
The development of creative methodologies as a medium to engage the voice of young nonverbal children was enabled through refinement of the research tools. Similar to Trimingham (2010) the physical reality of the puppets meant that they could also be manipulated by the children.
Optimising their use was the introduction of a real, functioning microphone which added to the puppets' reality and the innovative quality of the research. This captured Alex's propensity for object knowledge.
On receipt of play therapy and appropriate parent child interventions, parental identity changed.
These transformations highlighted the effects of positive collaborative relationships with professionals encouraging parents to return to relational processes engaging with their child.

Implications
Based on an analysis of the findings there are implications for research and practice. This research set out to explore if creative methods can engage children with ASD. In a sense, puppets as innocuous but 'controllable physical objects' (Trimingham, 2010, p.2) engaged children.

Practice
As an approach to inclusion, this research In summary, this research has made a contribution to existing research on Early Years education and Early Intervention by advocating the need to specifically address the intersubjective challenges of the nonverbal child with ASD, using the creative Arts. This research has also established that puppetry can be developed as a key instrument in accessing children's worlds.
Parent voice was influential. Through movement there is potential to access voice. Children with Autism and their parents can be encouraged not only to 'be' but to 'be with'.