Two world views: Perspectives on autistic behaviours

Abstract

This article reports on a study, utilising phenomenological methodology, which used interview and video narratives to collect data from 10 young people with autism and their parents. Data analysis employed multistage, primarily ethnomethodological methods in order to interpret and understand experiences of autism. The study found that parents, arguably influenced by the medical and psychological perspectives through which ‘autism’ has evolved, problematise what children with autism do as pathological. This article juxtaposes parents’ understandings against how children with autism, themselves, account for what they do, by exploring respective accounts of children’s obsessions and ritualistic behaviours.

Keywords

autism obsession parents repetitive rituals

Background

Autism is a developmental condition characterised by social communication and imagination impairment along with the presence of repetitive and ritualistic behaviours (Medical Research Council (MRC), 2001; World Health Organization (WHO), 2010). The precise nature of autism is difficult to ascertain given that no biological diagnostic tests exist (MRC, 2001; Schreibman, 2005). Aarons and Gittens (1999) state that ‘every autistic child is autistic in his/her own way’ (p. 7). However, this says little about the nature of autism except that it is interpreted, identified and understood in specific relation to the experiencing child.

WHO (2010) criteria cite restricted and repetitive patterns of behaviour and activities to include, encompassing preoccupation with stereotyped and restricted patterns of interest, specific attachments to unusual objects and apparently compulsive adherence to specific, and non-functional, routines and rituals. However, these behaviours are subject to multiple interpretations, as one man’s obsession is another man’s drive and determination. In addition, the term ‘non-functional’ is applied by the observer, not the individual who may understand their routines to be perfectly functional.

Historical development

The psychiatric construction of autism emerged against a backdrop of behavioural and emotional classification of autistic-like behaviour (Schreibman, 2005), which was retrospectively reinterpreted through the psychiatric lens (see, for example, Frith, 1989). The construction of autism did not occur in a social vacuum but was constituted via historical influences in the manner of all social objects (Hacking, 2002; Holmer-Nadesan, 2005).

Psychiatric origins

During the late 19th century, observable differences and difficulties, such as those which became associated with autism, were viewed as factual, pathological and objectified diseases (Maudsley, 1900). Psychiatry increasingly asserted its dominance over mental health and developmental knowledge and understanding (Illich, 2010). Autistic disorder as we know it now has its roots in psychiatry, pedagogy and psychology, evolving within these influential perspectives. In 1943, German psychiatrist Leo Kanner drew attention to a group of children for whom impairments in affective contact characterised their personalities from the very beginning of life. Kanner (1971) summarised autism as an

Inability to relate to people and situations in an ordinary way from the beginning of life … [and] anxiously obsessive desire for sameness. (p. 140)

This new identification of childhood autism is described as crucial in classifying the condition and developing child and adolescent psychiatry as a specialist branch of medicine (Neumärker, 2003).

Adhering to the principles of his medical background, and the paradigm in which he was located, Kanner largely disregarded subjective experience, focusing instead on recognising and differentiating pathologies. Things, objects, people and bacteria were all considered reducible, measurable and classifiable under medicine’s microscope. Kanner (1943) described his young patients as ‘pure-culture examples’ (p. 250) of an organic trait, depicting clear and uncomplicated diagnosis. Kanner’s training as a physician, his location in an advancing treatment centre in the United States, and his conditioned outlook, all set the context for the origin of autism as a distinct type of psychiatric emotional response.

Pedagogical perspective

The historical context for Kanner’s classification of autism also provided similar conditions for Hans Asperger, an Austrian physician with a special interest in remedial pedagogy. In 1944, Asperger wrote a paper detailing a group of children noted for their conduct difficulties which he categorised according to personality disorder, defining the basic problem of the children’s conduct disturbance as autism, relying, like Kanner, upon Bleuler’s (1916) definition of autism as aloneness. Utilisation of this concept defined extreme aloneness and also differentiated the autistic personality disorder from schizophrenia. As well as autistic aloneness, Asperger’s patients were observed to have fetishes and absorption regarding particular objects, toys and fantastical events or stories. Collecting, which might be seen as an ordinary human habit, was also described as extreme and abnormal in these children. By the time Asperger’s paper (1994) became familiar to researchers in English-speaking countries, both his and Kanner’s accounts had been used to illustrate and enlarge a number of psychological deficit theories, which have since dominated autism literature.

Psychological deficit theory

Perspectives from the field of experimental psychology also heavily influenced social constructions of autism (Holmer-Nadesan, 2005). Uta Frith, in particular, asserted various theories of psychological deficits in the autistic mind. Frith (1989) relied greatly on the deficit/defect model to describe autistic subjects as different and abnormal, utilising comparison with robots, aliens and other science fiction and fairy tale characters. Creating a method within which autism made sense from a psychological perspective Frith (1989) described autistic disturbances as

Cognitive dysfunction of a particular dynamic operating characteristic of a very high level. (p. 102)

Through discussion of various behaviours noted by Kanner and Asperger, such as language, speech, gesture, rituals and so on, Frith described theories of underlying cognitive defects. However, despite abundant theorising within psychology (e.g. Baron-Cohen, 1995, 2000; Baron-Cohen et al., 1985; Blackshaw et al., 2001; Carpendale and Lewis, 2004; Rosnay and Hughes, 2006; Russell, 1997), deficit theories have proved inconclusive.

Developing selves

Despite inconsistent results and questionable validity (Hill, 2004; Rutter and Bailey, 1993), psychological deficit theories remain the focus of debate and discussion (e.g. MRC, 2001; Schreibman, 2005). Although these theories have so far failed to identify a core autistic deficit (MRC, 2001; Haq and Le Couteur, 2004), their basic presumptions become ingrained in how autism is talked about and experienced. Hence, one of the key issues discovered in literature referring to the experience of autism is the concept of difference (Esdaile 2009; Rumsey and Harcourt, 2007) and, related to this, issues of stigma (Farrugia, 2009; Mak and Kwok, 2010; Mukolo et al., 2010). In addition, obsessive and repetitive behaviours are cited as a cause of difficulty for parents of autistic children and classified as challenging behaviour (Ludlow et al., 2012).

Construction of self within such paradigms is of key interest to this article. Rumsey and Harcourt (2007) suggest that difference has considerable psychological ramifications for young people, the most frequent of which relate to a negative impact on self-esteem, self-perception and social interaction. A number of studies exploring views of disabled children highlight the impact of disability discourses on children’s developing identity (Davis and Watson, 2001; Kelly, 2003, 2005; Marchant et al., 1999). A critical point to be made regarding the above perspectives is that although autism is described as uniquely affecting each individual, it is talked about as a concrete entity with identifiable boundaries and components. The differentiation and uniqueness of each case is therefore lost in the discourse.

Methods

The study’s methodology drew primarily on interpretive phenomenology. Re-search has been described as a way of seeing again the representation of phenomena, or re-presenting phenomena, in order to elicit deeper understanding about the nature of contextual reality (Heidegger, 1962). This means taking an alternative viewpoint of what is already seen, or what is obvious, and reframing it to highlight the influence of context in a given situation (Gadamer, 1989). This in turn provides a deeper, more rounded, view of the phenomena under study. The aim of obtaining a deeper understanding of individual experience led naturally to the study’s underpinning methodology of interpretive phenomenology, as described by Martin Heidegger and expanded by Hans George Gadamer. It was considered that this approach would allow for a shared conversation through blending participant and researcher interpretations, alongside rich description of participant experience. Fundamental to this approach is the experience of unique individuals as they construct and navigate everyday life (Gadamer, 1989; Heidegger, 1962). Hence, the aim is to elicit engaged understanding through conversation, culminating in a fusion of experienced realities and interpretations of both researcher and the researched (Gadamer, 1989), culminating in the development of new knowledge.

Participants

As the study’s main aim was rich description, a smaller sample size was required to meet available time and resources, and considered appropriate to the underpinning methodology. A purposive sample of 10 young people aged between 8 and 16 years with a diagnosis of autism was recruited. In addition, 10 parents of autistic children, 5 of whom were related to aforementioned group, were included within the sample. All young people were deemed capable of consent and therefore those with severe autism were excluded. The study was approved by Glyndwr ethics committee, and participants were recruited from within local schools and autism advocacy groups. All respondents were mothers, with the exception of one father. All respondents were English-speaking, White, British families.

Data collection

Informed written consent was obtained from each participant prior to data collection. Both parents and young people were given written and verbal information regarding study particulars. In addition to ethical issues inherent in research with vulnerable groups, children with autism present varied and challenging communication issues, requiring creative research methods. Practical everyday activity is the primary source of knowledge in interpretive phenomenology (Benner, 1994) and was the focus of data collection. Some young participants were given a video recorder with which to document their thoughts and feelings, as well as responses to a list of topical questions regarding their experiences. Others, declining use of video equipment, participated in semi-structured interviews. A number of young people carried out both video and interview methods. Video cameras were considered to have a number of advantages in exploring everyday life worlds of young people with autism. Use of video cameras empowers young people through participation, providing greater control over the research process. This provided opportunity to capture as much experiential data as possible, utilising both a semi-structured and emancipatory research environment. There were vast differences between some young people’s video and interview data. One young participant produced a vibrant and informative video recording but during interview sat looking at his knees, repetitively stretching his face.

As advocated by Gillham (2005) interviews themselves were semi-structured by grouping questions into categories based on a natural chronological sequence. Pre-structuring interview questions in this way retains flexibility and enables a ‘narrative sequence’ of events (Gillham, 2005: 19). Open-ended questions were used to encourage storytelling. All interviews were audio recorded with participants’ permission. Data collection with the 10 young participants yielded 7 interviews and 5 videos, in addition to 10 parental interviews.

Data analysis

Analysis was carried out alongside data collection. The study adopted thematic analysis, as described by Benner (1994), as a method of analysing transcribed accounts. From this an ethnomethodological (Garfinkel, 2002; Sacks, 1995) approach was taken, followed by a more post-structural analysis of data. Ethno-methodology draws on the reflexive nature of social practice, enabling greater understanding of particular phenomena. For example, ethnomethodological methods can be utilised to show what love or greed looks like in a variety of social practices, and how they are carried out as social practices, making concepts identifiable and more visible. Rather than merely interviewing and producing a thematic rearrangement of the parts, the study set out to explore influences and motivations, often take-for-granted, which are used by people affected by autism to construct everyday experience. Hence, an ethnomethodological approach was taken in order to disclose methods and resources used by participants. The emerging data then, arguably, produced a deeper kind of knowledge about autism and provided the better understanding advocated by Gadamer (1989).

Findings

Findings from the study, which narrated participants’ journeys prior to and through service provision, suggested that the social construct of autism is reproduced in experience through everyday discourse.

Parental constructions of obsession and repetitive behaviours

Parental accounts indicated two main types of ritualistic and repetitive behaviours: ritualistic behaviour patterns and obsessive traits. Both of these appeared to be categorised according to functionality. Ritualistic behaviour patterns, which involved competencies that might be considered useful, such as maths, were described by parents in terms of gifts and skills. Useful obsessive traits were also described by some parents in terms of passion, motivation and determination. Parents described these ‘valued’ behaviours as ‘extraordinary’ and ‘amazing’, ‘bizarre’ and ‘phenomenal’, sometimes making reference to Einstein and other famously gifted individuals. Generally, such skills and rote learning abilities were encouraged by parents.

In contrast, repetitive behaviours and obsessions appearing to serve no purpose, or which complicated everyday life, were described negatively and parents sought to control and modify these behaviours in their child. Children’s ‘limited range of food likes’ (Janet) were presented as aspects of autism, rather than of typical childhood or personal preference. Not only was the colour of food relevant but also food texture and presentation. Parents explained that

Everything had to be homogeneous … can’t have bits, everything’s … everything has to be separate. So if he has beans on his plate they have to be in a bowl, so they don’t touch anything else. (Helen)

He has to have everything separate on his plate, any gravy or bean juice on the wrong thing contaminates it and it can’t be eaten … he has exactly the same packed lunch every day, and eats things in a particular order, as previous tastes affect the current one. (Janet)

In addition to colour and presentation preferences, parents also reported on children’s insistence on order.

Another ‘repetitive’ aspect of autism described by parents was children’s ‘rituals’ and ‘obsessions’. In the extract below, Janet notes how, during his early years, her son Jonathan

Seemed to have obsessive rituals whereby past comments or conversations had to be repeated exactly or actions were carried out in a set pattern.

Reporting this behaviour as indicative of autism, Jonathan’s mother described Jonathan’s likes and hobbies in terms of ‘fixation’, ‘ritual’ and ‘obsession’. Parental use of such professional language was used, for example, by Harry’s mother, to convey the effect of this type of behaviour:

[Harry’s] obsessions are, can become, not tiresome … but it so preoccupies him, and it so directs, so controls his life, that it can be really difficult sometimes … making sure that everything is in place that is important … it’s controlled huge amounts, chunks of our lives.

Behaviour patterns described as ritualistic and repetitive were reported by parents as chores, requiring control and management. The different ways of depicting rule-driven and obsessive behaviour, described by parents, highlights the qualitative, or uniquely experienced, nature of autism, and the shaded boundaries between order and disorder.

Children’s accounts of their behaviours

Young people in the study also described food issues as part of autism. For example, 10-year-old Jonathan, in answer to how he is affected by autism, described himself by saying,

I have a limited range of foods, as there are many things I don’t like. I also don’t like certain foods mixed together, like chips and gravy. That may seem weird, but just imagine chocolate sauce on your sausages and you’re halfway to understanding.

Describing favourite foods in terms of a ‘limited range’ is arguably unusual for a 10-year-old boy. The term was also used by Jonathan’s mother Janet in her narrative, to describe his autistic symptoms. Arguably, many people do not like chips and gravy, or other combinations of food, and have varying preferences over flavours, food presentation and utensil use and so on In young people without autism, these preferences are not considered ‘weird’ and do not usually require justification.

Within the young people’s accounts, obsessions and hobbies were interchangeably linked, and here they often evoked the professional label ‘obsession’. Ten-year-old Jonathan, for example, told me,

My games are definitely an obsession, as mummy keeps reminding me.

While there is no question for Jonathan that his hobbies are an obsession, and therefore associated with his autism, he clearly indicated that he has learned this from his mother.

Many of the young participants expressed fondness for Pokémon, a computer-based game which originated in Japan. The word Pokémon comes from the Japanese for ‘pocket monsters’. The game has been successfully targeted towards young people’s partiality towards collections. From its early beginning as a computer game, Pokémon and its popular characters quickly became available in a wide range of plush toys, posters, bedroom furnishings, cartoons, trading cards, toys, books and other merchandise. In the world of Pokémon, pocket monsters are chosen from a range of different types (i.e. fire, electric and water monsters) in terms of strengths and weaknesses, and battled against Pokémon from other players’ collections. The global success of Pokémon is testament to its popularity among young people of many different cultures, and also highlights collecting as an ordinary and non-pathological pastime for young people. Ten-year-old Jonathan described his reasons for liking Pokémon as follows:

There are so many different games and so many Pokémon to collect, and each Pokémon is different and has a whole bunch of facts associated with it.

Jonathan highlights the unique differences between Pokémon characters as a significant aspect of his interest. While this contrasts to what might be expected of a condition marked by a desire for sameness, it also may reflect Jonathan’s own experience of himself as different and unique.

Many young study participants described the attraction of individual Pokémon and the variations between them:

There are just so many to catch, and everyone is different! Some are really cool like Steelix. Some are really beautiful like Milotic. Some are really smart like Alakazam. Some really tough like Mewtwo. And some are really cute like Togepi. (Jonathan)

My favourite is Raichu who only has one weakness because it’s an electric type. (Joseph)

While individual differences between Pokémon were valued by participants, as noted earlier, these differences were not always experienced as valued in the young people themselves. Differences between the strengths and weaknesses of each individual Pokémon also seemed important for participants. That Raichu (see Joseph above) has only one weakness means it is able to protect itself against many of the strengths of other Pokémon. The ability to protect oneself and overcome adversaries is arguably popular with young people like Joseph because of (in this case) his self-reported experience of being bullied and an understanding that all young people with autism are bullied.

The ability to overcome a malignant force or foe appeared to be a key factor in attracting young participants towards particular games or hobbies. Nine-year-old David, for example, reported an interest in World Wrestling Entertainment (WWE) in which each wrestling character is associated with particular attributes related to size, build, strengths and weaknesses. David said ‘my favourite is Rey Mysterio. He is cool. He is little like me but still won lots’. Here, David compared himself to his favourite wrestler, identifying with the character’s physical height and build. There is also an understanding that success is not necessarily associated with size. Other young participants appeared to identify with particular characters, particularly where these possessed powers to overcome enemies and exert powerful control over their circumstances. Jonathan, below, explained the appeal of his particular interests stating,

Some of the characters I definitely would want to be like, Mario especially … stomping marshmallows, beating Bowser to a pulp, whacking stuff with a ‘hamma’. Not that I’d be violent in real life. Also I think some of the Pokémon powers would be kinda neat.

Despite earlier professing to have a lack of imagination, here Jonathan imagines what it would be like to possess Pokémon powers, while maintaining a clear grasp on reality.

Some young participants invented personalities and identities for their collections. Nine-year-old Harry displayed his collection of Bionicles, which belong to a catalogue of robots made by the Lego Group. He described his own family of Bionicles, saying,

I don’t name them the names they are in the movie. I call them like human names … This big one here is Jack, this one’s Luke … Isaac and his brother, Zac. (holds up figures) you’d never tell they were twin brothers would you? Zac – wooooooh. Sorry, he’s a little bit over tempered isn’t he? Really over-tempered.

Applying human characteristics to his robots, Harry highlights unique differences between each robot.

Descriptions of favourite, and not so favourite, characters provided an insight into the way young people valued particular personality traits and experienced, and understood, interactions between self and other. Introducing his Bionicles Harry said,

There’s a person called Chris, he’s green and kind of (stretches arms) that big. … he’s got knives, and a mask, he’s been hiding … Joe … everyone thinks he’s a bad guy, but he’s a good guy. He’s cool.

That, in the above narrative the character Chris is hiding behind a mask and Joe is misunderstood, arguably reflects a level of complexity of individual character development.

For some young people, identifying with these figures meant tailoring their appearance to match that of their favourite characters. Harry, who proudly displayed his ‘boy’s kind of baseball shoes’, which ‘David Tenant (Dr Who actor) wears’, said,

I have long hair, this bit at the back has been growing since I was year two. And it’s up to here. (points out hair length) Supposed to be by here because, you know Star Wars, well, some people might know Star Wars, well I grew this hair like Anakin off episode two and three … As you can see I’m wearing pink socks. I stole them from my mum. My other socks don’t fit me anymore. I ripped them so I can wear them as gloves. Like Anakin does. He wears these big gloves in episode three, and Attack of the Clones volume two.

The accounts above also appeared to demonstrate how young participants used their constructions of autism to develop their interpretations of self and other. Hence, descriptions of obsessions and rituals included temporal and emotional associations. Young people provided intricate details about the abilities, commitments, intentions and desires they associated with the objects (fictional characters) of their ‘obsessions’, which offered insight into how they saw themselves and what they did. Here, young people described significance they attached to the order and time associated with individual toys or characters, saying, for example,

The first Pokemon I ever battled with was Turtwig but I still like all Pokemon. But my Turtwig has evolved into Tortella now. And I named it Hoppy because I like the name Hoppy but I don’t know why. (Matthew)

He was the first one I ever got … Joe … He’s the third one I ever got. (Harry)

Despite his progression through the game levels, Matthew remained attached to the character Hoppy, who belongs to an earlier level of the game. Such emotional attachment to game characters arguably implies that young people may experience self and the world through their play interests. Certainly, descriptions of interests and hobbies appeared to frame young people’s experience of the world and their interaction with it. For example, Harry described how he had been in his new home ‘eighteen months’ which was the same period as the ‘Master (from Dr Who) had been in Cardiff’. Young people also portrayed understandings of the world through their interests. Hence, holding up a Dr Who figure Harry said,

This is Christopher Eccleston, and he’s going to go with a sonic screwdriver with you. Vroom. He’s got funny ears doesn’t he. Must be the way he was born mustn’t it.

In this narrative, Christopher Eccleston has unusual ears, which are likely inherited. However, Harry does not indicate that there is necessarily anything wrong with Christopher Eccleston’s ears; they are merely different.

Another example of the way in which young people’s narratives around their interests arguably reflected how they interpreted self and the world is apparent through Harry’s reported fascination with science fiction:

I like having Asperger’s because it makes me different. I don’t like being the same. Makes me feel like a clone, one of those things off sci-fi, you know, sci-fi movies? … I like being different. It’s just that sometimes people call me weirdo, or they don’t like me being different. But it’s my choice really isn’t it, well, it’s not my choice having AS but I think it was a good no choice.

The interpretive phenomenological methodology underpinning the study describes amalgamation of participant and researcher perspectives, a shared conversation which reframes interpretations within more obvious contextual influences. Hence, the data collected and the researcher interpretations combine to create new knowledge and deeper understanding of phenomena which is grounded in participant experience.

Discussion

Both parental and young people’s descriptions appeared highly informed by a much medicalised version of autism, as evidenced in their use of professional language in everyday interactions. This has been noted previously by Avdi et al. (2000), whose research described three main discourses surrounding parents’ accounts of autism; these being ‘normal development’, a ‘medical’ discourse and that of ‘disability’. It is considered here, however, that these three are simply different variants of the medical discourse. No research was found which compared accounts of parents and young people within these methods of interpreting and describing everyday life.

Within the study under discussion, a number of differences were encountered between young people’s and parents’ accounts. Some of these differences involved young people’s interests and ‘obsessions’. It is difficult to define exactly where a specific interest becomes an obsession. In parental accounts, while children’s interests were not presented as severely restricting children’s everyday lives, obsessive and ritualistic behaviours were perceived as highly restrictive. In contrast, ritualistic patterns of behaviour were rarely reported by the young people themselves. Moreover, whereas parents described obsessive symptoms as compelling among children with autism, young people demonstrated considerable agency and autonomy in the choice and execution of their interests.

Parents presented obsessive and repetitive behaviours as symptomatic of children’s conditions, labelling these behaviours as either functional or non-functional. Functional ‘obsessions’, which were behaviours reported to confer some social advantage upon children, included those attributed to extraordinary talent. Here it was noted that parental presentation of skills as manifestation of this talent drew on wider (media influenced) discourses around giftedness. Abilities manifesting perceived giftedness, including for example mathematical prowess and musical proficiency, were encouraged by parents. In contrast to giftedness, parents also described non-functional repetitive behaviours, including uncompromising food likes/dislikes, and some interests and hobbies. The contrast between functional and non-functional types of repetitive behaviours can be found in the literature. For example, Ludlow et al.’s (2012) designation of obsessive and repetitive behaviours as non-functional reflects the pathologising of autistic behaviours. Many childhood activities may be described as non-functional, and repetitive behaviours appear to serve purpose in children’s lives. The pathologising of young people’s experience is one example of how their world views are dismissed within the medical model.

Parents in the study interpreted obsessive behaviour through the lens of medical and psychiatric discourses. Through this lens, obsessive behaviours indicated something wrong with their children. Within a medical discourse, obsessive and ritualistic behaviours are subject to control, management and modification. Young people, however, while themselves applying medical terms to their experience of repetitive behaviours and special interests, through accounts of their behaviours demonstrated considerable agency in using their interests and hobbies to interpret their worldview and their place within it. For example, young people gave detailed descriptions of their attachment to those particular sets of computer-based characters endowed with attributes that they valued. These characters were described in terms of strengths and weaknesses, much in the same way that participants described their own strengths and weaknesses.

Young participants also described the personalities and characteristics of action figures, imagining different strengths and values, as well as flaws, for each. For some young people, these characters held value because of their association with particular times and contexts. This indicated how young people structured their experiences in relation to their activities and determinations of valued attributes and associations. Describing their interests and values appeared to help young people express their feelings about particular situations. These interests and hobbies also assisted them to interpret situations and experiences, helping them to organise their recollections of events.

Autistic selfhood

Erikson (1950) referred to identity development as a person’s ‘capacity to unify his experience and his action in an adaptive manner’ (p. 15). In terms of obsessions and rituals, the term adaptive is synonymous with functional. In terms of identity development, theories of self are conceptualised within cultural and historical experience. Dominant paradigms concerning childhood socialisation have focused on developmental processes, with different fields concentrating on areas such as personality, development and language attainment (Speier, 1971). The dominance of these ideologies therefore serves to influence ways in which identities are developed, and participant narratives testify to young people’s commitment to their foundational realities and ideals. The nature and scope of autistic disorder is measured by conformation to normative standards of functionality.

Understanding lived experience involves interpretation of dialogue and its contextual relationships (Heidegger, 1982). Knowledge, as Silverman (2001) asserts, is ‘theoretically impregnated’ (p. 23), in that theory always stems from practical knowledge (Heidegger, 1982). Separation of the two is what Heidegger (1982) refers to as the fundamental problem of the scientific method. In problematising and pathologising children’s behaviours, parents and professionals are in effect applying the scientific method to the children’s experiences, thereby constraining their own attempts to construct their identities.

A medicalised version of autism was found to pervade both parents’ and young people’s experience of autism via both linguistic and social practices. Avdi et al. (2000) also discussed how ‘emotionally charged medical material’ pervades everyday experience, to the detriment of balanced assessment of complex needs. In addition, the current treatment of autistic individuals, which is based upon behaviour modification and normalisation, arguably aims to address so-called pathological behaviours. The article suggests that this medicalised version of autism, which appears embedded within the practice of ‘doing’ autism, may be generally interpreted as a need to alter and modify young people’s speech, behaviour and actions. From both a sociological and a developmental perspective, this social reproduction of autism, and the practice of normalisation, has implications for the identity development and self-esteem of young people with autism.

The methodology and data analysis employed by the study contrasts sharply with the plethora of medical research in the field of autism. The sociological perspective offers a broader view of the experience of living with autism. Ethnomethodology in particular produces respondent accounts which provide rich description of social and cultural influences on both the development and experience of autism, thus making the social reproduction of autism visible and comprehensible. Naturally there remains a number of limitations to the study, in particular the small sample size; however, this was deemed to be overcome by the depth and flexibility of data collection. Young participants’ communication issues added to the difficulties of obtaining their perspectives. Again, flexible methods, such as use of video recordings, increased participation and experiential data. Further sociological research with this type of participant groups is recommended in order to elicit participant perspective and describe contextual influences contributing to ways of understanding the lived experience of the disorder. This in turn may influence professional understandings, leading to practices founded upon the methodological process set out above. This would encourage client-focused interventions based on a shared interpretation of perspectives.

Footnotes

Acknowledgements

The authors would like to acknowledge Professor Alex Carson who was Director of Studies for the PhD study on which this article is based.

Funding

This work was supported by an RCBC Wales fellowship award.

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