Whose research is it anyway? Tensions and difficulties in research that tries to include the ‘hard to research’

In this paper I consider some of the tensions and problems that can arise, and that need to be addressed, in attempting to undertake research with hard to reach groups of ‘subjects’. In terms of my research this specifically relates to studies undertaken families that include children on the autism spectrum (including the children on the spectrum themselves) as well as children with multiple disabilities and visual impairment (MDVI). I begin by summarising my work experience and how this has shaped my research interests before moving on to discuss studies I have undertaken with the ‘hard to research’. I outline the research studies and the process of the studies before moving on to look at the issues arising. Finally I identify seven key factors regarding this type of research

Effective respite care for families with children with autism spectrum disorders

Descriptive presentation regarding short breaks services for children with autism

A matter of perspective: the experience of daily life and support of mothers, fathers and siblings living with children on the autism spectrum with high support needs

Much research has been undertaken examining the impact of living with autism on the family. However our understanding of life in families with children on the autism spectrum is predominantly based on research carried out with parents. Even when siblings are the specific focus of the study, parental report may be the primary data source (e.g. Griffith et al., 2013; Hesse et al., 2013). Furthermore it has been argued that fathers’ perspectives are under-represented, and that mothers are often the primary or exclusive participant in this area of research (Cridland et al., 2013; Flippin and Crais, 2011; Johnson and Simpson, 2013). This means that assertions are often made about ‘families’ or ‘parents’ based solely upon maternal report (Phelps et al., 2009; Weiss et al., 2013). Whether mothers’ perspectives should be privileged in this way, and whether such reports can be assumed to represent the views of their spouses and children is debatable (Seligman and Darling, 1997). Whilst there is some emerging literature focused on mothers and fathers (Jones et al., 2013; Pottie and Ingram, 2008) the need for more research focused within families, looking at all members, has been identified (Griffith et al., 2013). This study seeks to address this issue by investigating the experience of daily life and social support of fourteen families that include children and young people on the autism spectrum with high support needs. It has three main aims: (a) to identify the key themes within the narratives of mothers, fathers and siblings across these families; (b) to identify key factors emerging from the consideration of whole families’ experience of living with autism; and (c) to consider the implications of these issues for research and practice

Teaching parents to understand and manage the behaviour of children on the autism spectrum

Overview of presentation: - Why is parent education important to help parents manage the behaviour of their children on the autism spectrum? - What needs to be included in parent education programmes? - Understanding of autism - Positive behaviour support - Dealing with crises/physical intervention - Research into parent education in the field of autism in the UK - Benefits of effective parent education

When puberty strikes – developing training for parents and professionals

Outline of training developed for parents and professionals regarding issues concerning self care and sexuality in adolescents on the autism spectrum

Ascertaining the views of individuals with ASD using structure and visual supports

Outline of techniques and strategies used in my MA and doctoral research to consult with children with autism