Theoretical Framework

The building of my theoretical framework was influenced and shaped by several factors, which I now discuss below.

Prior to embarking on my PhD study, personal experiences led me to question where the autistic voice was in matters impacting on and relating to autism. For this reason, I decided to explore ways to contribute to a process whereby the voices of autistic individuals could be heard - informing, guiding and shaping research on autism and consequently inclusive service provision. This process is evident across the agenda of other minority groups, including the wider field of disability rights, and is echoed in the sentiment to which ASAN (Autistic Self-Advocacy Network) subscribes: ‘Nothing about us without us’. As such, I considered this to be both an exciting and necessary move towards change in a field evidencing oppression.

Reflection on the purpose and impact of social theory regarding my study seemed an interesting starting point. The critical role of real life experiences in informing and transforming service provision has been experienced first-hand by me and my family, so I sought for a way to express this in my framework. This and my wider interests in disability studies and equality and diversity led me to use the following quote by Oliver (Oliver, 1990; Oliver, 1999) as a meaningful reminder about what I wanted to explore, and the visual representation included illustrates how I envisaged the relationship of these three elements:

121

‘For me, all social theory must be judged on three interrelated elements: its adequacy in

describing experience; its ability to explain experience; and finally, its potential to

transform experience.’

Oliver (1990, In: Oliver

2009, p89)

describe

transform

explain

Figure 34: Illustration of Oliver’s (1990) stance on social theory

In relation to the development of theory, I also reflected on the point made by Thomas, as it is one which encourages exploration and the pushing of boundaries in an attempt to make new discoveries:

122

‘…what is needed is more ad hocery,

more thought experiments, more

diversity.’ Thomas (2007, p46)

Furthermore, Thomas also aligns himself with the view proposed by Foucault (1981, In: Thomas, 2007), namely, that theory inhibits and that creative, unpredictable and unrestricted thought are, in fact, instrumental in the development of progressive practice.

I reflected on this point time and again while developing my own framework and the elements feeding into this, namely interpretative phenomenology, narrative enquiry and critical realism. These are discussed below, together with their specific contributions to my study, and this blend is a new approach to the field of autism research.

This next section describes my positionality in terms of addressing the key points in my theoretical framework, namely describing experience,

123 explaining experience, and highlighting the potential to transform experience. This subsequently informed later choices in my study.

Ontological position

The first step in developing my framework concerned decision-making around the breadth and depth of experiences to be explored since my data had been gathered for the purposes of evaluating a support service for autistic people. I needed to reflect on which data to include, as this was inter-related with the experiences expressed, and subsequently provides an explanation of my choices (Ridout, 2014d; Ridout et al., 2011). Critically, it was important not to decontextualise the experiences of participants (Phoenix, 2008; Riessman, 2005).

Maintaining a focus on methods that demonstrated a respect for and acknowledged the perspectives of others was essential in tackling potential power issues which arose as a result of me being the ‘new narrator’ (Andrews, 2002a; Squire, 2012) of the experiences of autistic participants. This was important in recognising diverse individual and collective perspectives on autism among autistics (Arnold, 2012; Chown and Beavan, 2012; Grandin, 2009; Milton, 2012b; Murray et al., 2005). My engagement with autistic people, researchers and practitioners would, therefore, be a critical factor facilitating this. So in order for my theoretical framework to address the issue of power in relation to the autistic voice, I considered how autistic individuals engage with others in

124 social settings, and how the phenomenological aspects relating to all parties could be brought together without dismissing the experiences of either. Critical Realism (CR), with its tool box of Critical Discourse Analysis (CDA) is one response to this.



Attempts to recognise the reality of the natural order

and social events and discourses



Exploration of power and differential access to public

discourses



Social analysis of discourse in a range of genres



Explores power abuse and issues of social inequality



Differential discourses according to identities at play

Figure 35: Critical Realism (author’s summary)

CR lends itself well to exploring how discourse may help identify a specific social wrong (in respect of my study, the absence of the autistic voice in matters pertaining to them) and obstacles to its resolution. As such, it endeavours to ‘recognise the reality of the natural order and the events and discourses of the social world’ (Bryman, 2012, p29). My reading around critical discourse studies, enabled me to see how social power could be explored in terms of differential access to public discourse (van Dijk, 1993; 2008, p2). At its core, CDA concerns itself with issues

125 pertaining to power and control and endeavours to explore and critique societal practices and customs (Bloor and Bloor, 2007). Therefore, CDA had an invaluable contribution to make to my framework.

Fairclough and Wodak (1997) saw CDA as the social analysis of discourse, using a range of different theories and methodologies and applicable to a wide range of topics, and this was a useful explanation for me to consider. Bloor and Bloor (2007, p1) note that: ‘the word discourse itself has a number of complex uses’, and is often used interchangeably with ‘text’ depending on the situation. However, they adopt it to signify diverse symbolic human interaction, such as spoken or written text, and visual forms, such as pictures and diagrams. Any or all of these forms could mislead, persuade, or inform, and so serve to illustrate the complexities of social inequalities highlighted by van Dijk (1993). Later, in his introduction to discourse, van Dijk (2008, p1) takes this further by emphasising the development of theory embedded in this approach and combined with ‘a critical analysis of the discursive reproduction of power abuse and social inequality’. The distinction is important, as power can rest in the hands of both individuals and institutions (Bloor and Bloor, 2007), and this has impacted negatively on many autistic individuals (ARGH and HUG, 2011; Beardon et al., 2009; Harker and King, 2004; Hendrickx, 2009; NAS, 2011b). These were practical viewpoints for me to reflect on in my research design (Chapter 4).

126 Rudman (2013) observes the need to understand how the problem and related solutions have come to be defined, since discourse occurs on different levels according to the identities at play. This relates to the argument posed by Bornstein (2013), which considers different spaces, or identities, and the regulations or rules that govern them. Regarding my study, this would concern where authority and responsibility have been situated in the construction of a dominant narrative of autism (Waltz, 2012). In addition, awareness should also be addressed concerning the power to control this definition and carry forward any action or decisions, and implicit in this is reflection as to whose needs are ultimately being met (Ne'eman, 2010). The disentangling of socially constructed problems and solutions is, therefore, a key political issue as regards service provision, and CR provides an important contribution for consideration of the identities brought by both researcher and participants.

Tew et al. (2006) argue that equality within the research context can best be obtained by acknowledging the ‘unique contribution of each’ and the ‘pooling of expertise’. This angle offered a fresh perspective and approach to research in the field of autism, and was one that I was keen to pursue. Critically, the perspective on autism, as offered by many autistic individuals, pays attention to the issues of power, imposed identities and language that are addressed by Critical Realism (Autistic Hoya, 2015; Milton and Moon, 2012; Sequenzia, 2012; Yergeau, 2010). For this reason, the detail of my ontology introduces an autistic perspective, which

127 runs counter to the traditional narrative and enables the reader to determine for themselves the ways in which a non-autistic narrative has established an agenda at odds with the views of many autistic people.

Photo: http://www.countinggreenstars.wordpress.com Figure 36: Autism definition

The detail of my ontology is informed by personal experiences and those of family, friends and colleagues and reflects my belief, that social barriers and attitudes prevent autistic individuals from accessing their basic human rights (DoH, 2014c; EHRC, 1998; HMSO, 2010). In addition, knowledge of contributory factors to inclusion or exclusion has assisted me in shaping my approach. Therefore, I propose an ontology of autism, which can be explained by exploring social barriers to inclusion and a social model of disability, which includes both the structural and psycho- emotional dimensions of disability (Reeve, 2002).

128



My assumptions



Contribution of autistic researchers and writers



Factors impacting on autistic people:

- Individuality

- Sensory sensitivity

- Anxiety in relation to sensory and social overload

- Wellbeing

- Unemployment and homelessness

- Individual reactions to a diagnosis of autism

Figure 37: Influences on my ontology

Initially, I considered my assumptions and made myself “familiar with the unfamiliar” (Peim, 2010) to build a wider understanding of autistic experiences, particularly the range of different and shared experiences and explanations provided. I also reflected on the diverse contributions to research and literature with autistic individuals as active researchers and writers, as this plays a critical role in redressing the balance of views on autism (Arnold, 2012; Milton, 2012b; Milton and Bracher, 2013; Murray and Aspinall, 2006; Murray et al., 2005).

As described in my literature review (Chapter 2, Section 3), autistic researchers and writers have counteracted the historical position on autism as defined by a deficit-focused medical model of disability. Rather

129 the autistic voice emphasizes individual differences and experiences (Graby, 2015; Milton and Ridout, 2014; Robertson, 2010b). For this reason, the diversity of autism is central to my ontology and has been informed by Arnold (2012), who views autism ‘not [as] a two dimensional thing with a high and a low functioning end, but rather as a ‘palette of colours that can be assembled from the primaries.’

Photo: http://www.artjustcause.org Figure 38: Autism and its palette of diversity

Arnold views autism as ‘a landscape, where one can move within a specific territory…’, and he is not the only autistic to describe autistic diversity, as Donna Williams uses the metaphor of a fruit salad to provide a visual image of the richness of autism (Williams, 2007).

My framework, therefore, highlights individuality, as it is a recurring theme in the writings and experiences of autistics. The individual experiences of family and friends added support to other narratives of insensitivity and discrimination, with an accompanying impact on self- esteem, and this is a frequently reported experience (Graby, 2012;

130 Greenstein, 2014; Milton and Moon, 2012; Moon, 2014b; Moxon, 2006; Murray, 2006b). Access to a support network and opportunities has had a key role in facilitating quality of life for individuals (Hesmondhalgh and Breakey, 2001; Ridout et al., 2011; Simone, 2014), and this has included friends knitted into a diversity of communities, and who have been able to enjoy their diverse identities. With a focus on independence, gaining qualifications or accessing employment, supportive communities and networks either assisted in this endeavour or at the very least maintained conversations about these possibilities (Dunn, 2014a; Hesmondhalgh and Breakey, 2001; NAS, 2011b).

Photo: https://countinggreenstars.files.wordpress.com/2013/11/so-gretchenleary1.jpg Figure 39: Sensory sensitivity

Nevertheless, another aspect informing my ontology is the impact of sensory sensitivity on autistic individuals. When combined with a lack of knowledge about autism, it has a powerful ability to skew the non-autistic person’s concept of an autistic person’s capabilities (Graby, 2012; Milton and Moon, 2012). For this reason, it was important to include CR in my

131 framework as it allowed me to explore this issue by considering the issues of power and language in diverse discourse genres (Phillips et al., 2004).

Photo: http://www.timetochangeleeds.co.uk/when-anxiety-takes-over/ Figure 40: Autism and anxiety

The anxiety provoked by sensory and social overload, is also acknowledged by my ontological approach, and I have witnessed and experienced the accumulating effects of these. In addition, high levels of anxiety and panic frequently result due to concern about change and unpredictability, and demands to conform to an agenda imposing social ‘norms’ informed by non-autistic individuals (ARGH and HUG, 2011). For this reason, I consider recognition and inclusion of the autistic voice at all levels of the research process to be integral to good practice in autism research.

Failure to include the autistic voice can only perpetuate the cycle of discrimination and exclusion, and this may then exacerbate feelings of worthlessness and negative attitudes around being different, which are often high among autistics (NAS and Ask Autism, 2014; TAP, 2014). As

132 Sequenzia (2012) says, acceptance is acknowledging the different communication preferences among autistics without trying to impose change.

Photo: http://www.timeshighereducation.co.uk/news/students-mental-health-problems- highlighted/2003957.article

Figure 41: Mental distress

Conversations with autistic friends and colleagues at Autscape 2013 and 2014 and throughout my course, in addition to personal experiences, have led me to look at the wider social impact of exclusion. The impact on wellbeing is clear: exclusion may result in isolation, which in turn often leads to mental distress. My position, therefore, is that it is unhelpful to view autism and mental distress through a medical model lens, such as that proposed by Tantum and Prestwood (1999) and Ghaziuddin et al. (2002) without addressing the wider sociological factors, such as context, power and language. CR has a positive contribution to make in listening

133 to the autistic voice on autism, and my view is that this is essential to balancing discussion.

Statistics highlight a lack of awareness and understanding of autism as reflected in high unemployment figures relating to autistics, with only 15% of autistics being employed (NAS, 2011a; Wallis, 2012). This is less than half the figure for disabled people employed.

Photo: http://www.globalnet21.org/guilt-homelessness/ Figure 42: Unemployment and homelessness

Many autistics live a life on benefits despite being highly skilled and wishing to work (NAS, 2011b). Constantly changing government legislation (DoH, 2014a; DWP, 2013; SCIE, 2013), and regional discrepancies in support assessments and provision of services (Dunn, 2014a) make this problematic, and additional stresses may also result in homelessness (Evans, 2011; Hotham-Gough, 2013).

134 Social constructions of autism and what it means to be autistic may impact on the self-confidence of autistic individuals and their ability to engage in society (Lawson, 2011; Murray and Lesser, 2006). I believe the construction of and contribution to both positive and negative images is illustrated well by Lawson’s description of autistic people as being differently abled individuals (Lawson, 2011, p17).

Ultimately, many autistics, whilst responding variously to a diagnosis of autism (Murray, 2006a), have expressed to me that it has been helpful in understanding contributory factors to their difficulties, such as those outlined above. Today many still fight imposed negative labels, which result in a constant need to manage feelings of anxiety, fear and exclusion.

Photo: http://www.kellymartinspeaks.co.uk/2011/06/managing-anxiety-fear-of- loss.html

135 My study engages with these types of arguments and tries to explore the subjective view of autistic participants and ways in which they construct their external and internal identities. An understanding of my assumptions has crystallised during my study helping me to better articulate my experiences and those of others, and I combined the above elements to inform my choices regarding research questions, methods selected and the interpretations of participant responses.

Epistemological position

Advantages

Disadvantages

My chosen area of research has been influenced by a combination of experiences mentioned in my ontology, and my approach of standpoint epistemology (Chapter 1, Motivation). My associated knowledge of autism

136 and diverse societal reactions to autistic individuals and their families has, therefore, presented both advantages and disadvantages.

In discussing some advantages of this position, as someone with insider lived experience, I had prior awareness of diverse autistic individuals’ support requirements concerning sensory sensitivity and overload, so was prepared to make and include adjustments in my study. Another advantage concerns familiarity with communication preferences (Allen, 2012; Brownlow et al., 2006; Davidson, 2008; Ridout, 2014d) and accounting for these in the planning and procedural stages. There was also a potential for the above to inter-relate with a dependency on family and benefits, so my awareness of this and the associated complexity of discussions and legislation was invaluable. As a ‘curious outsider’, I had the potential to be creative with my research to explore new and diverse ways to problematicise perspectives on inclusion of the autistic voice (Arnold, 2012; Milton and Moon, 2012; Sequenzia, 2012; Yergeau, 2010), and to explore those perspectives that had been previously offered. This had the potential to place me in a position of understanding, voicing this impact more effectively.

A disadvantage of standpoint epistemology may manifest as a difficulty being objective by distancing myself from the subject of interest, therefore making assumptions that my experience was also that of a participant (Bloor and Bloor, 2007). However, as I come from a constructivist-realist perspective, I did not align myself with a notion of

137 objectivity, since my interaction with data sets was to be constructed in the moment (Bloor and Bloor, 2007, pp26-27). Another difficulty might be the over-thinking of my research questions by assuming that participants would address the areas that were of interest to me (Graby, 2012; Waltz, 2012; 2014). Reflecting on the experiences of those from my sample based in a specific region, and combining this with those of other autistic individuals, would potentially lead to the building of a more comprehensive picture.



Relationship between education and political

assumptions



Human rights, equality and diversity



Autistic biographies and research on inclusion of the

autistic voice



Justice and fairness regarding payment for services

Figure 44: Influences on my epistemology

As a researcher, my role includes the conscious or subconscious filtering of information to demonstrate my view of autism. The relationship between education and political assumptions was embedded in my study, and I considered the contribution of Freire to explore this issue. I rejected

138 Freire’s notion of the ‘bank-clerk educator’, who assumes students to be ignorant empty vessels for receiving and incapable of critical thinking (Freire, 1993). This would have required me to dominate participants, viewing autistic individuals as having no personal knowledge of their requirements. Rather, I turned to my natural approach, which Freire describes as the ‘problem-posing educator’. As such I would reflect with participants, as this would provide opportunity to establish a more liberating and potentially empowering environment, where encouraging and listening to the views of others played a critical role. This style has been described as more organic as it reflects the natural talents of individuals and believes in innovative approaches (Robinson, 2010; Robinson, 2006b). The development of a design characterised by more organic elements seemed to me to be a process more welcoming of autistic differences and encourages expression of their views.

A further influence on my epistemology is my view that education should concern an understanding and teaching of human rights. This embraces issues relating to equality and diversity and recognises the need for effective implementation of equal rights in respect of access to services and support requirements (HMSO, 2010). Evidence from personal and shared experiences demonstrates societal barriers and poorly implemented government policy, which impact adversely on both the individual (in terms of life opportunities and experiences) and society

139 (losing resources) due to the denial of equal rights. For this reason, effective engagement with individuals and communities is critical.

Dealing with diverse identities and experiences by using appropriate, relevant and flexible methods is key to opening up opportunities for