Validity and ethical considerations

Epistemologically, the study data were mainly rooted in the individual cases of each child and the parent and teacher relationships that formed around them through the home- school reading programme. Teachers and parents worked collaboratively as co- producers of knowledge, using their unique perspectives of being with the child and finding ways to combine aspects of home and school through home-school reading. Whilst commonality would be examined in the barriers and enabling factors for home- school reading, there was no guarantee that the findings and outcomes for one teacher and family would be the same or similar to that found in any other home-school reading partnership. This is particularly pertinent when working with children with autism who span a spectrum of needs and abilities.

As other studies have indicated (Hewison and Tizard, 1980; Kelly-Vance and Schreck, 2002; Loveday and Simmons, 1988), it is not always possible to ensure a matched control group of children not taking part in an intervention programme with those who are, because the parent participants are self-selected in that they volunteer to take part. However, in this case it was possible to identify pupils not taking part in the study with similar characteristics to those in the study, based on children’s existing Childhood Autism Rating Scale (CARS) score, academic level in reading from school assessment records and communication level. This provided a matched control group for whom school assessment data could be compared.

The majority of the data were based on participant self-reporting and it was therefore important to be able to substantiate and triangulate findings in one data set with those another, where possible, and to be able to ‘address the same aims by different

50 methodological approaches’ (Oliver, 2003:140). If during the final interview, for example, a parent reported progress in their child sitting for longer, I would expect to see this in video evidence or in diary entries made during the programme.

Ethical issues were considered in light of the ethical guidelines laid down by BERA (2011). From the outset, I adhered to the ethical principle of complete openness about the purposes of research with all participants (Oliver, 2003:13). All families in the school were sent a briefing letter (see Appendix 1) with the initial parent questionnaire, and I presented the same information to staff during a staff meeting. The research aims were reiterated again for participants at each phase of the study. I stated that homework interventions can be stressful for children with autism and their parents and that all participation would be entirely voluntary; those who agreed to participate would have the right to withdraw at any point without giving a reason. All data generated or used for the study would be stored safely in accordance with the data protection act (1998) and all reasonable steps would be taken to protect the anonymity of participants in reporting. Parents and staff would be asked separately if videos were to be used in study presentations, as these may reveal the identities of the participants if shown to a familiar audience.

Informed consent was important for each aspect of work and it was sought from the adult participants for each stage of the study. Although the study was primarily about teachers and parents working together, the children had a vital role in being the subjects of the home-school reading programmes. The children’s willingness to participate in the work was therefore an important consideration. Many children could not give informed consent themselves because of their low levels of language and cognition. It was important that all children were monitored by the adults working with them and that participation was never forced. In situations where children displayed signs of unwillingness, this was respected. An example of this included the videoing of the children; in one case a boy refused to read when the video camera was on, both with his teacher and with his parent; another child took his mother’s mobile telephone after she had used it to film him and he deleted the video she had taken. In both of these cases teachers and parents suspected that the children were not happy with being filmed and so stopped this aspect of the study.

51 With regards to the children’s school assessment records (CARS scores, B Squared records and communication assessments) I advertised my intention to use this (anonymised) data in my briefing letter to all parents and I obtained written consent from all teachers and the SLT to access this data for the study.

The impact on parents

When parents read with neurotypical children, they are likely to benefit from the ‘reward’ of increased social interaction and relationship building between parent and child (Vandermaas-Peeler et al, 2012:3). However, such rewards might not be forthcoming for parents in this study when reading with their autistic children. It is well- documented that raising a young child with autism can be extremely stressful for parents (Dillenburger et al, 2010; Glazzard and Overall, 2012; Gray, 2006) and that ‘homework’ of any kind can place further burdens on parents and their children which may be unmanageable (Winner, 2011). This is particularly so in the early stages of a programme, before the children have had the opportunity to develop their compliance and joint attention skills. Parents may well experience rejection and tantrums from their children, particularly when trying to begin new routines and encourage social interaction (Sicile-Kira, 2003). For some children with autism, it may take a considerable time, longer than the programme’s intended duration to gain any social engagement benefits because it is so difficult for them to acquire skills in this area (Frith, 2003; Vermeulen, 2001). Furthermore, if progress takes longer than might be expected (Wing, 1996), parents may feel they have failed or that it is not worth the considerable effort needed to succeed when home-life might already be difficult. Although school staff may be sympathetic to these issues and attempt to be supportive towards parents, these kinds of difficulties may cause some parents to drop out of a programme such as this. Studies have indicated that parents of children with autism often feel isolated and need more help than parents of neurotypical children or children with other special needs (Dabrowska and Pisula, 2010; Tehee, Honan and Hevey, 2009). Parents of autistic children often rely on the school for support with their child (Dillenburger et al, 2010; Hodge and Runswick-Cole, 2008; Tehee, Honan and Hevey, 2009). Bearing in mind the stresses and strains the parents may well have been placed under, it was important that

52 the introductory letter for this study outlined the potential benefits to the parents and children (see Appendix 1).