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A parent survey of the narrative interests and skills of children with autism, their siblings and peers: Preliminary Findings March 2013 Dr. Evelyn McGregor, School of Education, University of Edinburgh Funded by the British Academy Summary Parents of children with and without autism were surveyed about the ways in which they and their children engaged with reading and storytelling at home. Initial findings suggest that children with autism do take an interest in different forms of reading and storytelling, some of which is shared with their parents, and this is not reduced in those with language or memory difficulties, though the children with autism are less likely than other child groups (sibs and peers without autism) to read on their own or talk about stories without prompting. Parents work harder at engaging their child with autism than the other child groups. All the child groups like fiction, and enjoy humour, pictures and lively characters. Where children with autism tend to focus on individual items and details in a story, other children focus on the plot and characters’ feelings. Forms of reading do not differ much between the groups, but some children with autism enjoy fantastical stories or comics. All the groups write and tell stories, including over half of children in the autism group. All have skills in the elements of storytelling, though the skills of children with autism are less developed. Overall, findings indicate that children with autism are more engaged with a range of reading and storytelling activities than earlier research seemed to indicate, with parents providing active encouragement and support. Introduction Storytelling ability uses many of the key skills that are restricted in ASD and even very able children have difficulties. It has been assumed that the children have little interest in storytelling, but pilot research has questioned this assumption: it reports that children engage often in spontaneous narrative at home, describing experiences, listening to, reading and creating stories. Understanding the context in which that interest is awakened and maintained is key to improving communication. The study aimed to address this topic through a questionnaire survey of parents of primary schoolaged children with autism. Parents were also invited to fill in a questionnaire about the interests of a non-autistic brother or sister, to compare them. Finally, parents of children where there is no family autism were included, to provide a between-family comparison. The survey asked about interests, activities, and story-telling skills, with the aim of understanding how they might be linked. The survey spanned a range of ages to map developing skills and interests and any changes in parental involvement as children get older. The questionnaire consisted of 30 questions about (i) the child’s characteristics, reading skill, related abilities and their style of storytelling; (ii) the aspects of books and storytelling that particularly interested the child; (iii) the ways in which the parent and child engaged with stories. Parents returned 336 questionnaires, with 78 about children with autism (ASD group), 53 about their siblings (Sib group), and 205 about typically developing children in families with no autism (TD group). Parents were recruited through the children’s schools and parent support groups for families with autism in Scotland and other parts of the UK. Describing the children Age and Gender: The children’s ages ranged from 2 to 17 years. Of these, 214 were male, 124 were female and one child’s gender was not given. The sibling and typically developing (TD) groups were evenly balanced for gender. In the ASD group 90% were male. The ASD and Sib groups had a higher average age at 9 years than the TD group at 7 years. This was because the TD group were recruited solely from primary schools, whereas the groups for the families with autism were recruited both from primary schools and parent support organisations, and some parents with older children wished to take part. For this reason the data analysis reports on the full samples on some aspects, and on the age-matched children (under 13 only) for other aspects, where matching for age might be important for comparing across the groups. There were 37 children under 13 in the Sib group and 67 in the ASD group. Difficulties with language or memory In the TD and Sib groups, parents reported that 4% and 8% respectively had difficulty with language, compared with 60% of the ASD group. For memory, in the TD and Sib groups, parents reported that 2% and 6% respectively had difficulty, whereas 39% of the ASD group did so. If a child had difficulty with language they were more likely to have difficulty also with memory. Engaging with Reading Introducing books and reading: The parents typically introduced their child to books before their first birthday: 76% of TD children, 63% of ASD children and 67% of Siblings engaged with books before 12 months. Similar findings from an Australian study suggest this is not unusual. Responses indicated that children with autism learned to read a few months later on average than the other child groups, at around five and a half. Almost a third of the children with ASD who could read did not read on their own. This compared with one sixth in the other child groups. If the children did read on their own, around two thirds did so every day, and that applied to all groups, and equally to younger and older children. Reading together (under 13s only) The survey responses showed that about 40% of the parents in each group read with their child every day. Asked who suggested reading together, 59% in the TD group said both they and their child were likely to suggest reading together. This compared with 37% in the Sib group and 39% in the ASD group. It was more common in these two groups for parents to suggest reading together (44% for ASD children and 37% for sibs) than in the TD group (23%). So it appears that parents in families with a child with autism needed to encourage shared story reading more than was the case for TD children, but a large minority of children with autism and sibs nonetheless were asking for shared reading. What the children liked to read Parents were asked what kinds of reading material their children liked. Across the groups, the most popular choice was stories. The TD children showed the strongest preference (91%) but parents rated 71% of children with ASD and 76% of their sibs also having a preference for fictional stories. Factual reading was not so popular, but across the groups the greatest preference was among the TD children (38% compared with 16% for sibs and 20% for children with ASD). Both of these findings go against the perception that children with autism have no interest in fiction and strongly favour books of facts. A few parents of children with autism were very clear that their children were only interested in factual reading, but others liked fantasy, mythical, magical, action comics, and football reading. Age differences in reading interests Different kinds of reading appealed to different age groups. Fictional stories were popular with all age groups, but particularly under 10-year-olds. Those with autism were less interested as they got older. The most popular age for liking comics was between 8 and 12 years, and for newspapers 8 years and upwards. Factual texts were popular with 8 – 10 year olds, and the over 13s among the sib group; and rhyming books and poems were favoured most by children under 6. Sharing the interest (under 13s only) The majority of the children talked about the stories afterwards, with parents reporting that around 30% of the ASD and Sib groups and 17% of the TD group did so if the parent initiated the talk. Parents reported that the child initiated talk in 49% of the ASD group, 61% of the Sib group and 71% of the TD group. This shows that the TD children were more inclined than the children with autism to talk about books, sharing their interest. However, almost half of the parents of the ASD children reported that their children did engage in talk about their reading, indicating some spontaneous interest in this activity. What children focused on (all ages) For this open question, the three groups had some similarity in focus: some in all groups responded to humour, and to bad behaviour in the characters, to events, and pictures of animals. Older children liked comics. Some parents in the ASD group reported working very hard to engage their children, who were not naturally interested in books, or not interested in sharing them. Some parents described their children growing to like or even love reading. Although there were some similarities in the focus of interest, there were also differences. Unlike the ASD group, many of the TD and Sib respondents noted their children were interested in the story plot, in what might happen next, in how characters felt, in how the characters or events might be similar to something in their lives. A few children would speculate about what might happen if the story character came to their house – or if they entered the world of the story. They seemed to set the story or the characters in a wider context, linking to them or what they knew. Writing and Storytelling Writing stories (all ages) Of the children who could read, 68% of parents of TD children, 64% of the Sib group and 48% of the ASD group said that their children wrote stories. Parents noted that the most common form of stories the children wrote was fiction, and there was no real difference between the groups (TD group, 73%, Sib group, 86% and ASD group 63%). A higher proportion of children with ASD than the other two groups wrote about, or re-wrote stories they had read. Around half of the TD and ASD children wrote stories for themselves and 73% of Sibs did so, according to the parents, and about half the TD and Sib groups wrote stories about personal experience and wrote for family. However, only a quarter of the ASD group did so. So overall, a sizeable minority of children with ASD wrote stories, mainly fiction, but they wrote mostly for themselves, not others. Telling stories (under 13s only) Parents were asked if the children ever told stories. Among under 13s, 78% of the TD group, 65% of the sib group and 65% of the ASD group did so. The children’s stories took different forms: The majority of children told their own fictional stories and there was no difference between the groups. More than half of the children re-told stories they had previously read or heard and there was no difference between the groups; 60% of TD children, 48% of the Sib group and 40% of the ASD group constructed their own fictional stories, according to their parents. The gap widened for telling stories of personal experience, with 72% of TD and 80% of Sib groups but only 37% of children with ASD doing so. Nonetheless, as with the written stories, a significant minority of children with ASD told stories in a number of forms, and the majority told some form of story. In conclusion, contrary to the assumptions based on research on formal narrative skills that children with autism do not have an interest in narrative or storytelling, the findings of the survey suggest that children with autism do have an interest in a range of aspects of storytelling. This includes reading or sharing books with parents, reading on their own, writing stories and telling stories. There are differences in the ways in which children with autism engage with storytelling compared with their siblings and children from families without autism, in the level and focus of their interest and the purpose of these activities for them. However, the findings provide scope for further research and possibly intervention on the contexts within which children with autism engage naturally with storytelling. Thanks I would like to thank the many parents who took part in this research. I really appreciate the time they were willing to give to complete the survey, often giving valuable additional information that I will be able to incorporate into the full report. It will also help me to plan future research in this area. I also wish to thank the staff and organisers from the many schools and autism support organisations in Scotland and other parts of the UK who gave their support to the research, again giving time in busy schedules to send out questionnaire packs to parents or pass information via emails and newsletters. Finally, I am most grateful to the British Academy for providing funding for the research study. Evelyn McGregor March 2013