Methods: the research practice

Five families, including my own, were recruited to engage in research to explore inclusive communication within their family. Family members engaged in the typical dialogue and interaction that they would usually engage in with their autistic young people within the family. This allowed parents to begin to reflect and further understand their young person’s expressions and communicative abilities, and how they interact within their family.

Reflections and discussion in the CLG enabled parents to explore their communicative interactions and to identify methods and approaches, needs and interests, to inform further communicative engagement. Each family was asked to elect a representative to attend meetings and take on the role of generating a reflective journal. This person or persons would act as gatekeeper (Lavrakas, 2008) for their family and would attend our

Collaborative Learning Group (CLG) to interact through discussion and reflection with gatekeepers from the other families in the group. We became 5 families engaged in

researching our situated communication with our young person(s) on the autism spectrum within our families. APAR allowed us all as active co-researchers to contribute to the process of communicative action through whatever form of communication was authentic to the person. The action reflection carried in reflective journals and CLG discussion, provided an iterative process of action-reflection and collaborative learning within and between families in our communication-research assemblage. (see figure 4 for structure).

Figure 4: Collaborative learning group and research structure

In practice it became the mother from each of the families that chose to engage in the CLG. This dialogue enabled the sharing of insights, issues and challenges, exposing each of us to alternative perspectives, new ideas and ways of doing/being. Across a period of 10 months we held an initial meeting and then 6 audio-recorded meetings. Gatekeeper mothers in each family kept a reflective journal, generated within each family and including artefacts from their young people, where they chose to contribute. The meeting transcripts and journal provided data for analysis to understand the lived experience as we

communication in the connect of our families. Our Collaborative Learning Group

interaction and the reflective journal provided opportunity to understand the links between feeling, thinking and doing; how we feel affecting how we think and subsequently what we do (Ghaye and Ghaye, 2010). Ghaye and Ghaye (2010) describe a practice of ‘positive, purposeful action’, with the purpose of ‘bettering or improving something’. This active approach to understanding our lived experience to affect positive change seeks not only to explore inclusion in communication, but to actively engage our young people as active in the research practice as experts in their communication.

Recruitment

To understand the nature of recruitment and how our research community was formed, I will describe how the families participating in this study came to be involved. This exposes not only the process which brought the families together but also alludes to the community context of conversations which informed the research design and study aims.

Family 1

In nursery our son diagnosed as autistic went to school on the transport provided so we rarely met other parents. We sporadically met families through the network of parents and events linked to our children’s diagnosis. I regularly encountered a family whose child was in nursery class with my son, we often chatted about our experiences. Several years later they became family one. This family consisted of Mum (Maddy), Dad (now separated), Will, aged 9 and Rosie, aged 12. Will and Rosie are on the autism spectrum. Will is nonverbal and Rosie has minimal verbal communication.

Family 2

A member of the team I worked with in an educational setting was negotiating her way through the family experience which led to her son’s diagnosis of autism. She knew that my family had been through a similar experience. We met for coffee and chats on a number of occasions and talked about approaches, shared stories and listened to each other’s experience. After I left work to pursue this research study this colleague was aware that the research was around inclusive communication, families and autism; we kept in touch and the family expressed an interest in the study. A year or two later, family two: Mum (Josie) and Dad (now separated). Josh aged 9 is diagnosed with autism and has a younger sister.

Family 3

My son participated in a small number of research studies, through involvement as a parent representative I met another mother of a boy with autism. We had a few brief conversations over time relating to this proposed research study. This mother expressed an interest. Several months later this family became family three: Mum (Kate), Dad, Dan aged 14 and diagnosed with autism. He has an older brother and sister.

Family 4

I had set up a small group for young people my son knew, to engage in a movement and relaxation session. We had space for another child and the therapist delivering the session invited a child she knew to join this session. This was around the time I was recruiting to this PhD study and the therapist described my research as she understood it. The family expressed an interest in participating in the research, a few weeks later, family four: Mum (Jen), Dad and Ollie aged 13 who is diagnosed with autism and has an older and a

Family 5

My family; building on the positive experience we had in our Masters’ research study we felt that the opportunity to explore communication further as our son was older was a positive continuation. The action-reflection cycle had continued since the previous study and we were keen to reinvest in this process. My involvement as a researcher participant provided a unique and embodied perspective on the study engagement, one that would allow an immersive experience of the research process and personal investment and impact, family five: I as Mum, Dad, Charlie aged 12 and diagnosed with autism and his older brother.

These families are self-selecting in that each of them asked for information on hearing about the study and chose to participate. Keiding and Louis (2016) acknowledge the bias that this self-selecting approach brings in on-line study participation in health care. In survey study data this is likely to have a marked effect on study findings. In the context of this APAR study it this self-selection which drives the study, family members are

specifically asked to bring their situated experiences to the research process. Through discussion they enquired about the study, requested further information and expressed an interest in joining. And so began the process of full informed consent (see appendix 1 for Participant Information Sheet and consent forms). I was previously acquainted with three of the four participating mothers and this allowed me to talk about the development of the study through community engagement. The fourth family was recruited through discussion with a third party, the relaxation and movement therapist. Whilst I recruited through the community of parents of young people with autism, I made no direct requests for these

family’s choice to participate in the study. I am conscious of the subjective nature of this study and the bias that is carried in the small sample and the narrow social profile of the families who chose to engage with the study. Whilst this does not provide a broad understanding of social and cultural differences in families and how this impacts the communication interactions, this is not the focus of this study.

What this research does engage is a breadth in the autistic communicative profile of young people. The six young people on the autism spectrum in this study have very different abilities in social and functional communication and as such, provided a dynamic and deep experiential narrative of what it is to be autistic. Our aim as parents was to explore our family communication, learning with our autistic young people to better understand our communication and how to support inclusion.

Through the initial stages of the recruitment process I discussed the study in more depth with the mother from each family and the time and commitment that would be required, particularly from the gatekeeper parent. Each of the mothers talked of their family’s efforts to support their child(ren). They understood that communication was important for them and felt it was important to understand how they might respond more effectively and how they could support the broader family to interact. Three of the parents also expressed a concern relating to the levels of anxiety that their children were experiencing and hoped that investing in communication might also help them to understand and support their child’s anxiety. Critical feminist philosopher, Rosi Braidotti describes this grounded need to act;

“…the pursuit of practices of hope, rooted in the ordinary micro-practices of everyday life, is a simple strategy to hold, sustain and map out sustainable

profound sense of responsibility and accountability” (Braidotti in Van Der Tuin and Dolphijn, 2012, p. 22).

Parents in the study came from a range of educational backgrounds and attainment. Much of the literature in autism looks to explore the deficits, difficulties and difference in order to develop understanding. As previously discussed, literature on families with children with autism tells us, as families, that we experience increased stress and vulnerability, that we regularly make adjustments to meet the needs of our children and that we are challenged to engage in typical family activities. Whilst there are no-doubt significant challenges and tensions facing our families each day, there are also significant positives to share and learn from. Families chose to participate in this study, mothers expressed an interest in working together to better understand their family communication looking to include their young person with autism. In a similar vein, Biklen refers to the ”optimistic approach” (Kliewer et a., 2015, Biklen et al., 2015, in Biklen and Attfield, 2005). Biklen actively chooses to look at situations which can be described as successful and learn from them. The families in this PhD research study are actively seeking new approaches through their involvement in this study and committing to the effort and work involved in the process. By actively seeking inclusive practice our families could be described as valuing

communication and assuming the engagement of their young person and therefore engaging in an optimistic approach. Rather than asking ‘can our children be included?’ they are actively seeking to explore and understand communication and asking

themselves, ‘How can our children be included in our family communication?’ This study establishes a community of practice which has emerged through natural processes of the lived experience. It draws together families who are seeking to find inclusive ways of

subjectivity has strong influence on the recruitment process and the resulting participant profiles. As a member of the community of parents of children with autism this study draws on my/our personal situated experience.

In the emergent CLG it was the natural affinity with others which drew individuals together and determined the participation of families and the membership of the CLG. Whilst our social demographics may not be diverse, the common experiences in our communications with our children held the potential to inform practices across all families with young people with autism. Family social and political circumstances will differ across the wider

community of families with young people on the autism spectrum. The challenges of social and political forces acting upon our communication encounters will impact in different ways, amplified or mediated relevant to individual family circumstances. The challenges and situations may differ within and beyond our small group of families. However, the presence of our autistic children and their ways of engaging in communication held commonality and enabled us to understand and contribute knowledge of the lived

experience of communication engagement in our community. Far from being exclusive to our small group of five families, the findings from this participatory, community driven research have potential to inform our understanding of the experience of the many families who live with such altered communication environments and encounters, and to seek answers, direction and ways of communicating.

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