Adult Interactive Style Intervention and Participatory Research Designs in Autism

Bridging the Gap between Academic Research and Practice

Lila Kossyvaki

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781317515791
• Edition: 1
• Topic: Education
• Subtopic: Education General

Regardless of their cognitive and linguistic abilities, people with autism can often find it difficult to develop basic communicative skills that are necessary to gain full control over their environment and maintain their independence. Building on the author's own cutting-edge research, Adult Interactive Style Intervention and Participatory Research Designs in Autism examines the impact that the interactive style of neurotypical individuals could have on the spontaneous communication of children with autism.

This book provides clear and detailed guidance on how to conduct research into autism in real-world settings such as schools and homes. Kossyvaki critically evaluates a wealth of relevant case studies and focuses on a number of methodological issues that researchers are likely to face when carrying out research of this complex nature. The author walks the reader through present literature on the importance of spontaneous communication and the atypical way that this tends to develop in autism, before bringing the results of her own research to bear on the question of how the interactive styles of neurotypical individuals can impact on the spontaneous communication of people with autism.

Adult Interactive Style Intervention and Participatory Research Designs in Autism is essential reading for academics, researchers, and postgraduate students in the fields of special educational needs, inclusion, autism, research methods, and educational and clinical psychology.

1
Introduction

1.1 The origins and significance of the book

Both academics and the wider society (which includes stakeholders such as practitioners, parents and people with autism) have identified a gap between academic research and everyday practice in real-world settings. McIntyre (2005), for example, focuses on the need to bridge the existing gap between academic research and school practice whereas David Mitchel in Higashida’s (2013) book very eloquently claims:

[…] often the gap between the theory and what’s unravelling on your kitchen floor is too wide to bridge.

(p. 6)

As an academic and practitioner myself, I have witnessed that University knowledge reaches real-world settings after considerable delay (if it ever does reach them). Moreover, good practice at school and even more at home is rarely disseminated beyond the specific setting. Therefore, the primary aim of this book is to take a small step towards bridging the gap between academic research and practice at school and at home, and in particular, to highlight this as a bi-directional journey. I take my doctoral thesis on enhancing spontaneous communication in children with autism as the starting point. This is further enriched by knowledge, thoughts, experiences and discussions on relevant topics throughout my professional career to date (pre- and post-PhD).

It has always been my philosophy to conduct research with ecological validity and societal impact. In short, I have always wanted to carry out research which directly transforms people’s lives. My PhD supervisor, Dr Glenys Jones, advised me that in order to achieve this, my work has to be presented in an ‘accessible for all’ manner. More specifically, she remarked that if what I say or write is not understandable by everybody ‘it is not good enough’. Following a presentation on my PhD topic I gave for Autism West Midlands in August 2014, an attendee commented on Twitter,

The presentation was the best example I’ve seen yet of an academic ensuring work is accessible for a lay audience.

This was the best compliment I have received about my work, and it is a driving force which keeps me energised and focused on the above goal. Since then, I was lucky enough to have been often receiving similar comments when working with practitioners and parents. Nowadays, there is a demand from universities and research councils for research with impact (i.e. research which contributes to understanding of the world and promotes applicable solution to real-world problems) and public engagement. This last consists of experts working alongside and sharing knowledge with non-experts. This will, hopefully, encourage more academics in the field of education and social sciences to build partnerships with schools, parent organisations and the wider community.

Although autism is a whole spectrum including individuals of different abilities and needs (Wing, 2012), the focus of this book is on children and individuals with autism and additional severe, profound and multiple learning difficulties (SPMLD) for two main reasons. Firstly, this field has been largely under-researched, with limited literature available on the topic. To date, most studies have focused on individuals with autism without learning difficulties or individuals with SPMLD without autism. From lengthy discussions with colleagues in schools and in academia as well as parents, I realised the necessity of conducting research and exploring ‘best practice’ for people with autism and SLD/PMLD such as Baggs (2007), Fleischmann (2012) and Higashida (2013). It is encouraging that there are examples of books either authored or co-authored by people with autism and learning difficulties, which provide authentic insight on how it feels to be autistic or live with autism (e.g. Higashida, 2013; Gallardo and Gallardo, n.d.). Nonetheless, more needs to be done in this field in the form of a more holistic but also hands-on approach (e.g. general guidelines but also individualised strategies to understand behaviours, teach a number of skills). Secondly, this is an area of great interest for me and a topic I feel passionate about.

1.2 Theoretical frameworks

The main study presented in Chapters 5 and 6 of this book and much of the research I have been involved in so far draw upon two theoretical frameworks widely used in disability research and developmental psychology. These are the social model of disability and the transactional model of child development. I will summarise them in this section.

In order to explain the social model of disability, I will start by outlining the medical or deficit model of disability, still currently predominant. The latter assumes that society is set and pre-determined and the person should be adapted or ‘treated’ (Rieser and Mason, 1990). Llaneza’s et al. (2010) article provides an example of using the medical model to interpret autism. This article compares autism prevalence to that of paediatric cancer, diabetes and AIDS and concludes that funding for autism research should continue, hoping that a cure will be yielded. Many individuals with autism are vehemently against the also so-called medical tragedy model. For example, Luke Jackson (2002), a person with autism, highlights that ‘looking for a cure for autism can be linked to Hitler trying to create an Aryan race’ (p. 77).

On the contrary, the social model of disability asserts that the problems are often socially constructed and reside outside the individuals themselves (Rieser and Mason, 1990; Tregaskis, 2002). Society should, therefore, provide the support that people need to access their physical, sensory and educational environment. According to Thomas (1999, cited in Reeve, 2004) social disablism can take two forms: (i) structural (e.g. people being excluded from physical environments because they cannot access buildings) and (ii) psycho-emotional (e.g. the emotional cost of being excluded from certain aspects of life such as the impact of looks of disapproval or pity). Reeve (2004) has very successfully pointed out that considerably more emphasis has been given to the structural component whereas far less attention has been paid to the psycho-emotional dimension. The Adult Interactive Style Intervention (AISI) study, my doctoral research, explores the extent to which staff provide children with autism with the reasons why they need to initiate communication at school, and the methods for doing this. It also addresses the psycho-emotional dimension as in school, children feel accepted as they are, adults being the ones who have to adjust their interactive style and not vice versa. Additionally, the social model of disability promotes self-advocacy by people with autism. This was greatly respected in the AISI study. For the development of AISI, personal accounts written by individuals with autism (e.g. Grandin, 1984; Sinclair, 1992; Lawson, 1998; Gerland, 2000; Jackson, 2002; Sainsbury, 2009) were considered. AISI also has been supported by two PhD students (now graduates) with autism who attended doctoral student conferences at the University of Birmingham, where the intervention and the initial findings of the study were presented (Kossyvaki, 2010; Kossyvaki 2011).

According to the transactional model of child development, adults’ behaviour may influence and shape children’s development (Wetherby and Prizant, 2000). Since communication is ‘a continuous dynamic interplay’ (p. 2), neurotypical (NT) adults bear the same responsibility with children, if not more, when communication breaks down (Aldred et al., 2001; Willis and Robinson, 2011). Developmental/relationship-based approaches which were used as a basis to develop AISI (see Chapter 3, ‘Reviewing the Literature on Adult Interactive Style to Inform Practice for More Details’) embrace the transactional developmental perspective. If, for example, adults speak too much or do not wait long enough, the child is very unlikely to initiate communication, not because they cannot do so but because the adults do not give them the time to do so. Similarly, if the adults do not respond to the child’s ‘inappropriate’ initiations, this might discourage the child from initiating again.

There has been limited evidence of the impact of these two models specifically on individuals with autism and SPMLD. Some people might even challenge the ability of individuals with SPMLD to experience psycho-emotional disablism. Echoing Shakespeare’s (2004) point that people with learning difficulties have been largely marginalised in the disability movement which has been dominated by people with physical and sensory disabilities, I would argue here that the impact of the aforementioned theoretical models needs to be further explored on the former population.

1.3 A note on terminology and the target readership of this book

I have always believed that actions should speak louder than words and I consider debates on terminology of secondary importance, especially when these take place at the expense of more ‘hands-on’ and solution-focused debates and research projects (e.g. should 2nd April be called ‘autism awareness’ or ‘autism acceptance’ day?; is ‘severe learning difficulties’ or ‘severe learning disabilities’ a more appropriate term to use?). I also believe that it is beyond my knowledge and expertise to decide upon terminology. Nonetheless, I would like to provide some clarifications here regarding the terminology used in this book. These are provided in order to avoid misunderstandings and feelings of offence for readers for whom terminology might be a sensitive issue.

The term ‘autism’ is used throughout the book in order to describe people from the whole autism spectrum (e.g. Kanner’s autism, Asperger’s syndrome, Pervasive Developmental Disorder) following The Diagnostic and Statistical Manual of Mental Disorders (DSM-V) (APA, 2013) according to which autism spectrum disorder (ASD) is now the only diagnostic label for all people from across the spectrum. The terms ‘children/individuals with autism’ (i.e. people first language) and ‘autistic children/individuals’ (i.e. condition first language) are used interchangeably as there is no unanimously preferred way. The terms ‘Challenging Behaviour (CB)’, ‘behaviours of concern’ or ‘inappropriate behaviours’ are also mutually used to denote behaviours which might put the individual or people around them at risk of being physically hurt of losing their dignity. The terms ‘severe, profound and multiple learning difficulties (SLD/PMLD, S/PMLD, SPMLD)’ will be used throughout this book to denote people with substantial intellectual and cognitive disabilities. Sometimes the equivalent generic term ‘complex needs’ might be used too. More specifically, the term ‘SLD’ refers to people with significant intellectual difficulties, difficulties in mobility, coordination, communication and self-help skills and need for support in all areas of the curriculum whereas the term ‘PMLD’ includes individuals with more complex learning needs, other significant physical or sensory disabilities or a severe medical condition requiring a high level of adult support both for their learning needs and for their personal care. It is beyond the scope of this book to deal with specific learning difficulties such as dyslexia, dysgraphia, dyscalculia and dyspraxia. The more generic terms ‘special needs’ or ‘special educational needs (SEN)’ are often used (as opposed to the medical term ‘disability’) to describe individuals with different types of disabilities including autism and SLD/PMLD but not exclusively these. The terms ‘real world’ and ‘naturalistic’ settings are used as synonyms. Last but not least, I refer to myself using the personal pronoun ‘I’ as this book is a reflection on my personal professional journey and using terms such as ‘the author’ or ‘the researcher’ would have made the book look distant and foreign.

I started writing this book as a Research Fellow and school practitioner, having a range of readers in mind. I want it to be relevant to a number of people who live, work and do research with individuals with autism and SPMLD. Addressing successfully and meaningfully a number of audiences from very different contexts (e.g. school, home, university) and countries has been a challenge. Pitching it in the best manner has been challenging (different people and audiences may be in favour of certain research approaches-qualitative or quantitative, some countries consider the use of the word ‘autistic’ insulting). Therefore, I decided to keep the rigour of academic writing (e.g. systematic literature review on covered topics, provide evidence for all claims I make, explain why certain decisions were made, acknowledge limitations) but avoid jargon as much as possible, explaining terms for lay audiences where necessary, and giving examples from and for practice beyond academia.

Half way through the writing of the book (July 2015), I obtained a lecturer’s post at the University of Birmingham. Part of my role involves the supervision of undergraduate and postgraduate students (primarily teachers, TAs, therapists and parents of children or adults with SPMLD) in the collection of empirical data in order to evidence good practice or improve their skills and settings. I then realised the importance of such a book in helping to support students with limited research knowledge to collect data in real-world settings on top of, in most cases, a demanding full-time job. Therefore, I undertook to make this book of interest to part-time students in education and social science departments who are asked to conduct naturalistic research, while being employed full-time. I hope that the book makes sense to all audiences it is geared towards, and I have taken some small steps towards bridging the gap between academic research and practice at school, home and wider community when it comes to autism and learning difficulties – or more generally, SEN.

1.4 The layout of the book

This book consists of nine chapters (including Chapter 1 ‘Introduction’, and Chapter 9, ‘Conclusions’), structured in three sections. The first section (Chapters 2–4) begins by presenting literature on the importance of spontaneous communication and the atypical way this tends to develop in autism. It also examines the impact NT individuals may have on autistic people’s spontaneous communication, and suggests a set of principles that school staff, parents and other people can use to increase spontaneous communication in individuals with autism and S/PMLD. The second section (Chapters 5 and 6) describes a part of my doctoral study on the effect of adult interactive style on the spontaneous communication of young children with autism at school. Specifically, it focuses on a number of methodological issues researchers are likely to face when doing research in naturalistic settings. It also presents and discusses some of the findings of the study (both quantitative and qualitative). The third part of the book (Chapters 7 and 8) outlines some lessons learnt from carrying out real-world research with autistic participants with S/PMLD and the people living and working with them. Additional practical advice on how to enhance practice is provided to parents and school staff, together with topics and ideas for future real-world research.

2
Autism and spontaneous communication

2.1 Introduction

One aim of this book is to explore the effect of adult interactive style on the spontaneous communication of children with autism. This chapter, the first of three reviewing the relevant literature, starts by defining social communication, a term which features heavily in the literature on child development. Following this, the chapter explores the differences between Typically Developing (TD) children’s social comm...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• List of abbreviations
• Foreword
• 1 Introduction
• 2 Autism and spontaneous communication
• 3 Reviewing the literature on adult interactive style to inform practice
• 4 Adult interactive style at school and at home
• 5 The research project
• 6 Analysing and discussing the findings
• 7 Participatory research designs: implications for practitioners and parents
• 8 Participatory research designs: implications for research
• 9 Conclusions
• Appendix 1: Questionnaire for Determining Spontaneous Communication in Children
• Appendix 2: AISI protocol
• References
• Index