Gaining initial consent from children to take part in research including those identified as being on the autism spectrum

I was in a similar position to Lambert and Glacken (2011) in that I found it difficult to find practical guidance on obtaining childs informed assent. There was also little in the way of visual examples to guide my thinking. I am going to move beyond the theoretical here in an attempt to articulate clearly the process of seeking child informed assent involves (Conroy and Harcourt 2005; Lambert and Glacken 2011). Developmental, individualised and a context specific view of a childs ability to consent was used to guide the process. As Couzens et al. (2004) reminds us mental age is not always a reliable measure of an individuals ability. Alderson argues that irrespective of age, development or ability children have the right to be considered as competent and legitimate participants in the research process (Alderson in Farrell 2005). It was therefore my responsibility as the researcher to present the research in ways which allowed children to make decisions based on their level of development. In my initial meeting with each group of children, I shared a powerpoint presentation with them. I was very clear with them while their parents had given permission for them to take part, this was not enough and I was seeking their approval. Cuskelly (2005) suggests it is the researchers responsibility to ensure that both parents and children understand that parent consent is not assumed to mean that children will participate (Cuskelly 2005, p. 102). Child assent is also vitally important in this study due to the child-centred research methodology being utilised (Lambert and Glacken 2011). While this was the children opting into the study, assent was seen as an ongoing process with opportunities for withdrawal built in throughout. I issued each child with a paper copy of the presentation which was going to double as a both a consent/assent form and as a form of leaflet that they could refer back to. I chose a power-point presentation as it allowed the research to be presented in a visual way and this was important as about a quarter of the research participants were identified as being on the autism spectrum. Children on the autism spectrum tend to be visual learners (Mesibov 2007). Ethically, this was also in keeping with the BERA 2004 guidelines as this research involved children including some children who did not follow a neurotypical intellectual capacity (BERA 2004, p. 7). The purpose of this presentation was try and gain informed assent from potential research participants by outlining what was expect of them and explaning why it was important that their voices were shared. I also explained what was going to happen to their information (see copy of power-point below). I felt that I provided the children with enough information initially but made the decision not to discuss the fact that in all groups children on the autism spectrum were taking part. I was unsure if the children who were identified as having an autism spectrum disorder were aware of this and also how much information did the other children have. By discussing this topic in the initial presentation I could have upset some of the potential participants and also highlighted difference in a way that I did not think would be helpful. This proved to be the right decision and with some groups the discussion around autism developed as we progressed through with some groups. David said at the end of the initial meeting that he was only here because he had autism and some other children in the same group raised questions about it. I explained that while I was interested in all their voices, I was interested in children who were identified as being on the

autism spectrum too and pointed out the fact that up until now no one had listened to them as part of a group. James also raised questions about autism during my initial meeting with his group and said that he thought it would help other children like him with disorders. He was surprised when I explained my view of autism and that I didnt see it always as a deficit. This was something he became very interested in and initiated a number of conversations on the matter with me. The presentation acted as both a tool to explain the project and as a consent form. It was also planned that considerable time would be spent with children looking at the types of diary they could keep to get an idea about how they best worked. Unfortunately, given the time constraints in some cases it was unfortunate that I could not spend the time on this that would have been ideal. Children were asked to write their name and class if they wanted to take part this is something that I can confident all participants could do prior to asking to ensure inclusivity. At the end of the consent/assent forms children could select the type of daily diary they wanted to keep. Only one pupil, Daniel (a pupil on the autism spectrum) said that he did not want to take part and due to the dilemmas this created, it is worth further exploration in a later post.