The families recruited to this study each had a child/young person or, in the case of one family, two young persons with a diagnosis of autism. Our children were in a period of childhood described as middle-childhood or early puberty, aged between 9 and 14 years of age. Other siblings in the families ranged from 4 to 16.
The six children diagnosed with autism participating in the study had varying use of verbal communication and each a unique profile of abilities. One child was non-verbal with no spoken words, two children had very limited or restricted communication, and currently or previously used extensive echolalia. Two children had vocabulary typical or beyond their age yet struggled to access this in conversation or when pressured or anxious. As such, the children in this study accessed the wide range of spoken language skills typically associated with autism. I make explicit this range of spoken language use or accessibility, not to define or suggest levels of ability, functioning or capacity but to describe the
availability of spoken language available to our children. This was an area of potential tension for me as the instigator of this process. The differing skills or abilities of our
children could have left parents feeling an increased sensitivity to the pressures or worries of having a child with no verbal communication and had potential to cause distress. The distance between the presentation of a child with no verbal expression and a child with strong vocabulary could also have had a negative impact on the ability of the parents to empathise and connect, and to be able to draw meaning from their discussion and engagement. However, this difference and space between experiences became an important aspect of our learning (as alluded to in the discussion on methodology and further explored in the discussion chapter). I was aware of this tension and also remained mindful of this potential for distress through the course of the meetings and interaction. My tension around this area decreased as the CLG almost immediately began to refer to this topic, this provided opportunity for discussion and sharing of perspectives around the differences of communication abilities of our young people. This range of unique skills in our children was typical of the families I regularly meet through the various social
opportunities and encounters. Recruitment reflected the typical encounters and networking of families and the range of skills and abilities our community of children typically have.
Where children with autism were non-verbal or used few spoken words, and could not explicitly acknowledge understanding or give consent, we inevitably looked to the ethical considerations of the study. Whilst we sought consent from all young people involved in the study, we were not able to establish consent or assent from the children who were unable to communicate through spoken, written or visual language. Whilst I attempted to provide materials in relevant form, this was a tension in the study as discussed in the ethics section within the previous chapter. As previously suggested, it was the
people in the process of families exploring communication, it did not offer a solution to our ability to gain consent from all of our young people. Similarly, the inclusion of the whole family and the child within the family aimed to take a holistic look at the communication environment, and as such, we did not problematise our autistic child. Where children were unable to articulate their consent, we looked to their behaviour as a means of describing any distress or negative effects of the study and used the collective response of the children and young people to guide our perceptions and understanding of what was appropriate, relevant and acceptable to them in terms of methods of engagement in the study process.
Consent
The majority of participants provided consent to full participation in the research process. The exception being two of the young people where their mothers were unable to reliably communicate the nature of the study and where the young people did not have the
established communication abilities to engage in the consent process. It was explained throughout the recruitment process that consent would be at each individual family
member’s discretion. Three family members chose to not actively engage but were happy that the family would be involved, and their presence and participation would be
acknowledged and represented in the data generated. This position was particularly relevant to older siblings of one of the autistic young people, one father in the study also adopted this participatory position, comfortable with the family involvement but not in a position, due to personal circumstances, to actively or proactively contribute to data generation.
Our consent forms asked if family members would be willing to be photographed and/or videoed as part of the data generation for the study. With the exception of one family who were all willing to be videoed there was a general rejection of the notion of video from the children and many parents. Whilst this had been a very useful tool in my interaction with my son in my previous Masters study, the children in this PhD study were older, and the message from many of the children who could reliably say no, was no! This reluctance across most families also suggested the level of discomfort in other family members. This provided a clear and effective message that we would not be using video. It also suggests that such a method whilst highly useful for reviewing interaction with non-verbal
communicators may not be a method that we can assume they are comfortable with, as such it is something that should be used with care and consent should be sought through relevant and appropriate actions where researchers choose this approach.