In the context of this PhD thesis, the altered perceptions inherent in autism presented barriers to communication within the family. The flexibility and openness of PAR enabled the contributions from our young autistic family members through their own methods of communicative action. McTaggart (1997) refers to the ‘authentic participation’ that can be achieved through ownership and “responsible agency in the production of knowledge and improvement of practice” (p.29). Sinclair (1992), pioneer in the autism rights movement advocates, “Question your assumptions. Define your terms. Work with me to build more bridges between us” (Sinclair, 1992, p. 302). By allowing our autistic young people to engage in their typical communications we were able to engage their situated and
authentic communication methods, allowing us to learn from their communicative actions in a safe communication space of the family home environment. Fundamental to the PAR process is reflecting in action on action (Schön, 1990), and as such the researchprocess
Collaborative action-reflection, also fundamental to PAR, encouraged contribution across the community of families engaged in this research process.
Our understanding of autism is typically driven by a clinical and educational perspective. This study sought the insider view of communication in families with autistic young people. PAR enabled us to learn from the interaction and dialogue between our family members and through the communicative action between families. This approach held the potential to involve all family members as co-researchers engaged in discussion and growing understanding. This community action approach runs counter to the prevailing research narrative in autism. Zuber-Skerritt and Farquhar (2002) advocate for the need to challenge dominant approaches to research and not leave a paradigm unchallenged simply because of its majority status.
In the context of this PhD study, PAR provided a powerful process which enabled us to explore our communication interaction through communicative action, both within our homes and our collaborative learning group. For our autistic young people verbal
communication was either not available or restricted as a form of expression, as such this situated and authentic communicative action expanded to acknowledge and engage communicative approaches beyond traditional linguistics and inclusive of individual
communication overtures enacted in our homes. A practice orientation of learning through doing (Kemmis, 2009) allowed us to learn from one another inclusive of all family
members, and to act upon this communication landscape seeking transformation. In practice, it was the mothers who selected to engage in the formal group learning process establishing a Collaborative Learning Group (CLG), allowing us to share the learning experience between families. The structure of this study established an action reflection cycle within and between families, as such, communication moved through and between
families allowing co-learning and multiple perspectives to inform one another. The
nonlinear approach and the parent led exploration offered potential to enable the inclusion of the silenced voice of the unique perspective of the family communication interaction where a young person has autism and furthermore, also held potential to engage the silent expression of the non-verbal young person through mutual learning in their own unique language and form of expression (Caldwell 2007, 2012). It is within the autoethnographic data generated by parents that we were able to surface these authentic communication interactions.
Autoethnography
Autoethnography provided an approach to research that acknowledged both my insider view as PhD researcher and the autoethnographic insider accounts of the family members as co-researchers engaged in the research process. Mothers as co-researchers provided autoethnographic data through reflective and storied accounts focussed on the
communicative interaction with their young person with autism and within their family. These accounts served to carry the narratives of their autistic family member through nuanced artefact and interactions. Through these accounts we were able to recognise the varied methods and processes of family communication a where a young person has a different and unique way of communicating, including those who are minimally verbal and non-verbal. Our stories and shared dialogue with other parents allowed us to reflect upon the ways that we engage with our young people and how we can understand our
communications to identify inclusive approaches. Autoethnography became the
Contemporary autoethnography is a methodology evolved from historic ethnographic practice. Such ethnographies were typically carried out through objective methods of observing other cultures. Whilst contemporary ethnography has become a more situated immersive engagement with a culture, autoethnography provides the voice from inside a cultural narrative offering rich and illuminating accounts that are difficult to access through other methodologies (Denzin, 2006, Denzin and Lincoln, 2018).
Geertz (1973) describes culture as;
“historically transmitted patterns embodied in symbols, a system of inherited
conceptions expressed in symbolic forms by means of which [people] communicate, perpetuate, and develop their knowledge about and attitudes toward life” (p. 89). Geertz’ perception of culture as reliant upon symbolic forms of communication troubles the cultural integration of a non-verbal autistic presence. The reliance on symbolic
representation of language suggests exclusion from the cultural context of home where this form of communication is not accessible. Without verbal communication or where our young people do not engage typical forms of symbolic body language such as eye contact or facing their partner, social engagement may be reliant upon very different forms of expressions and interaction: Expressions which may be missed or misread. Yet communicative interaction remains rich and the cultural identity of home is unique to a family. The concept of culture as reliant on this symbolic representation must therefore be challenged to enable inclusion of the non-verbal autistic presence. In effect, we may not rely on historically transmitted patterns to draw on as in typical social interactions, but may need to develop our own unique histories and methods of shared meaning.
Autoethnography offers the complete insider account of a full member researcher (Anderson 2006), this approach allowing us to immerse ourselves and gain critical awareness of situated family communication. This situated positioning combines the
principles and techniques of autobiography and ethnography, providing a first-hand
narrative of a situated and personal cultural experience. It is therefore well placed to draw in the authentic cultural narrative of homes that engage more than verbal and symbolic communication. Autoethnography ranges from the social-science based Analytical Autoethnography of Anderson (Anderson, 2006) through to Evocative Autoethnography (Ellis, 1999, 2004). Manning and Adams (2015) acknowledge the various forms of autoethnographic writing which emphasise different aspects of “the social research-life writing continuum” (Manning and Adams, 2015). This continuum expresses the differing forms of autoethnography, which exist in between evocative and analytical approaches. These varied forms include critical autoethnography (Holman-Jones, 2016), collaborative autoethnography, (Chang et al., 2016) and community autoethnographies (Toyosaki, 2011). Le Roux (2017) considers that between the polarities of evocative and analytical there are many ways of approaching, and forms of writing autoethnography which carry the affective, yet apply an analytical interpretive approach. As such, research may take very different forms. Beyond more traditional written reports; performance, dance, monologue, song, film or photography may all form methods or outcomes of an autoethnographic research study yet will share the common heritage and core characteristics of critical reflection and reflexivity.
The autoethnographer uses ‘thick description’ (Geertz, 1973) of the cultural experience to develop an understanding and critique of the cultural life. This reflexive account
encourages the reader to engage with the narrative and to challenge and question the norms and preconceptions. Adams et al (2014) acknowledge that autoethnography is not fixed and encourage the creative evolution of this methodology suggesting; “As you create
perspectives on the varying application and validity of autoethnography. Wall (2016) argues for a moderate autoethnography that takes the middle ground, offering opportunity for evocative narrative but within an analytical framework. In a similar vein, the evocative form has been criticised as prioritising the therapeutic over analytical importance
(Anderson, 2006). Autoethnography in all forms demands, and must engage, reflexivity, and requires the researcher to question their assumptions about objectivity, meaning and truth (Williams and Jauhari bin Zaini, 2016).