Mainstream is not for all: the educational experiences of autistic young people

Abstract

This article highlights two current issues facing autistic young people in their pursuit of suitable education. First, mainstream education is advocated for all, from a rights-based perspective on inclusion, yet, as 12 autistic young people from Northern Ireland demonstrate, being academically able does not mean they are mainstream able. Second, autistic young people, who are largely missing from the debate on educational improvement, and in particular the inclusion debate, ought to be central to this discussion and have much to add. The social model of disability is considered relevant to autism. For the young people referred to in this article, inclusion is a feeling (a sense of belonging) not a place (mainstream or otherwise).     

‘They just seem to live their lives in their own little world’: lay perceptions of autism

The prevalence of autism spectrum disorders is believed to be higher than that of other conditions, such as Down syndrome or diabetes, yet few studies have explored the ideas lay people have about autism. Semi‐structured interviews were used to explore how 10 lay people with no knowledge or experience of autism conceptualised autism. Interpretative phenomenological analysis and discourse analysis illuminated four discourses: (1) autism as transgressing normative expectancies; (2) dependency and functional ability discourse; (3) autism and the discourse of mental status; (4) autism and explanatory discourses. Participants demonstrated clear views (although not necessarily correct) about the nature, origins and manifestations of autism. They drew upon their understanding of normal child development to make these assessments and they made judgements about the ability of individuals with autism to attain social independence. It is recommended that interactions between lay people and people with autism may help develop positive conceptualisations of autism.     

Validating difference and counting the cost of exclusion in the lives of people who identify as on the autistic spectrum

This current issues piece will explore how autobiographies written by people with autism can help identify sensory processing differences that might be viewed as possible attributes in an enabling society, but for which ableist perceptions are often negative. In concrete terms, these constructions may be preventing people from entering employment and making an economic contribution. The first autobiography written by someone who identified as being on the autism spectrum was by David Eastham in 1985. Since then, over 50 such books have been published. The emergence of such autobiographies challenges assumptions about what it is to be on the autism spectrum. It was often assumed people with autism were incapable of such social communication, as autobiographies assume abilities such as self-awareness, imagination and the ability and desire to communicate. These were all traits that were thought to be absent in someone diagnosed with autism. Consequently, the presence of these autobiographies destabilises and questions the dichotomy that was set up between what constitutes ‘normal’ and ‘abnormal’ behaviour.     

Communicating with children with autism spectrum disorder and their families: a practical introduction

Impaired communication and social interaction are symptoms central to autism spectrum disorder (ASD). Children or young people with ASD have varied intellectual ability, learning difficulty, and needs. For caregivers and health care professionals providing care to children with ASD, many challenges are encountered in everyday conversations. Enhanced knowledge of the spectrum and understanding the child or young person with ASD may improve conversation and social experiences. This article provides a practical introduction for health professionals seeking to improve their interaction with young people with ASD. Fictional vignettes, in which children with ASD are seeking care and support are presented, followed by discussion on communicating with children with ASD.     

Mapping the social geographies of autism – online and off-line narratives of neuro-shared and separate spaces

This paper draws together empirical work that has been produced by the authors in two different autistic spaces: the Swedish magazine Empowerment produced by and aimed at adults with autism, and English-speaking autistic communities online. While the two points of data collection are quite different, there are important points of commonality that enable us to explore central issues concerning autistic and neurotypical space and the meanings assigned to these in different contexts. The paper aims to introduce the notion of social geographies of autism, based on talks among adults with autism and a social movement to promote autistic identities, giving examples from our previous work that has spanned both online and off-line spaces. Key issues discussed in the paper include a focus on autistic political platforms and the carving out of both social and political spaces for people with autism. In doing so, neuro-separate and neuro-shared spaces must be negotiated.     

Improving research about us,with us: a draft framework for inclusive autism research

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.     

Representations of autism in Australian print media

The mass media provides a frame for discourse around important health issues, and it has been widely demonstrated that the development and reinforcement of stereotypes of minority groups are strongly influenced by the news and entertainment media. An extensive search of academic databases failed to locate any studies which examined the representation of autism in the news media, although there were a number of articles on the media role in the autism and MMR debate. This paper reports on an examination of the extent, and nature, of coverage of ‘autism spectrum disorders’ in the Australian print media between 1996 and 2005. Key findings include a relatively limited amount of factual information and a dual stereotype of people labeled as having autism as either dangerous and uncontrollable or unloved and poorly treated. The paper concludes with a discussion of the implications of the nature and tone of this coverage of autism and its potential impact on individuals described as ‘autistic’, their families and carers and the community in general.     

Efficacy of a Facial Emotion Training Program for Children and Adolescents with Autism Spectrum Disorders

Twenty-five high-functioning, verbal children and adolescents with autism spectrum disorders (ASD; age range 8–15 years) who demonstrated a facial emotion recognition deficit were block randomized to an active intervention (n = 12) or waitlist control (n = 13) group. The intervention was a modification of a commercially-available, computerized, dynamic facial emotion training tool, the MiX by Humintell©. Modifications were introduced to address the special learning needs of individuals with ASD and to address limitations in current emotion recognition programs. Modifications included: coach-assistance, a combination of didactic instruction for seven basic emotions, scaffold instruction which included repeated practice with increased presentation speeds, guided attention to relevant facial cues, and imitation of expressions. Training occurred twice each week for 45–60 min across an average of six sessions. Outcome measures were administered prior to and immediately after treatment, as well as after a delay period of 4–6 weeks. Outcome measures included (a) direct assessment of facial emotion recognition, (b) emotion self-expression, and (c) generalization through emotion awareness in videos and stories, use of emotion words, and self-, parent-, and teacher-report on social functioning questionnaires. The facial emotion training program enabled children and adolescents with ASD to more accurately and quickly identify feelings in facial expressions with stimuli from both the training tool and generalization measures and demonstrate improved self-expression of facial emotion.     

Counselling Disabled People: a counsellor's perspective

For many years professionals have assumed that disability is a problem for impaired individuals and that it is the disability that causes emotional or psychological problems. Whether this is true and whether a specific model of counselling is needed to help disabled people to cope with the emotional effects of their disability has not been widely researched and this is examined in this piece of research. The causes of psychological distress are discussed and the ways in which counsellors work are studied. Using a grounded methodological approach, disabled and able bodied counsellors of disabled people were interviewed as this was considered to be the most sensitive way of exploring this area. The findings show that more often than not it is the client's lack of control over their physical and social environment and not the impairment that causes emotional difficulties. Counsellors indicated that, through the facilitation of counselling, a sense of self empowerment in practical, emotional and social areas could be achieved and this was the central theme emerging as the most distinctive aspect of counselling clients with physical impairments.     

Pathological demand avoidance: my thoughts on looping effects and commodification of autism

Hacking suggests autism is a human kind, and has used autism to discuss their evolution over time. Looping effects caused the autism human kind to evolve since 1995, with people identifying with the autism human kind, and the commodification of the autism human kind by the autism industry. Pathological demand avoidance (PDA) was created from the looping effects controlled by the autism industry. This has undermined autism self-advocacy by supporting the medical paradigm of the autism human kind. By refusing to engage with PDA, people of the autism human kind limit the commodification of autism; creating greater emancipation.     

Autism: understanding conceptual processing deficits

Autism is a behavioral diagnosis characterized by a triad of impairment, which includes impaired communication, impaired social skills, and impaired spontaneity. The outward behavior exhibited by people with autism represents a different cognitive processing style than that seen in typical development. Understanding the way people with autism process and store information is important for intervention. The majority of people diagnosed with autism do not have symptoms of mental retardation and need access to mainstream services to work on the problems presented by daily life.     

“People Want to Protect Themselves a Little Bit”: Emotions,Denial, and Social Movement Nonparticipation*

Emotions can be a source of information and an impetus for social action, but the desire to avoid unpleasant emotions and the need for emotion management can also prevent social movement participation. Ethnographic and interview data from a rural Norwegian community describes how people avoided thinking about climate change in part because doing so raised fears of ontological security, emotions of helplessness and guilt, and was a threat to individual and collective senses of identity. In contrast to existing studies that focus on the public's lack of information or concern about global warming as the basis for the lack of public response, my work describes the way in which holding information at a distance was an active strategy performed by individuals as part of emotion management. Following Evitar Zerubavel, I describe this process of collective avoiding as the social organization of denial. Emotions played a key role in denial, providing much of the reason why people preferred to avoid information. Emotion management was also a central aspect of the process of denial, which in this community was carried out through the use of a cultural stock of social narratives that were invoked to achieve “perspectival selectivity” and “selective interpretation.”     

The construction of communicative (in)competence in autism: a focus on methodological decisions

Research on people diagnosed with autism spectrum disorder (henceforth autism) is often based upon biomedical understanding. Such understanding tends to view the characteristics related to autism diagnosis, such as the lack of or atypical use of speech, as a sign of incompetence that can be reduced as an underlying pathology of an individual. However, little research has explicitly investigated how methodological decisions in research might influence the perception of these characteristics. This paper draws on two separate research cases involving minimally verbal children with autism to examine how methodological decisions in research design, data collection, data analysis, and data interpretation influence the construction of communicative (in)competence in these children. The paper encourages researchers to carefully consider and reflect on the methodological decisions they make throughout the research process.     

‘You’ve got autism because you like order and you do not look into my eyes’: some reflections on understanding the label of ‘autism spectrum disorder’ from a dishuman perspective

The psychiatrists and health professionals who ‘updated’ the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders in 2013 changed how ‘autism’ is meant to be interpreted. For example, Asperger’s disorder merged into an overall collective of ‘autism spectrum disorders’, rendering Asperger’s non-existent as a separate disorder. Yet the terms ‘Asperger’s’, ‘autistic’ and ‘autism’, in general, are used on a daily basis by people who have been diagnosed/labelled in this way over the course of their lives, or indeed are used by people to label others in stereotypical and prejudicial ways that leads to their marginalisation. With this thought in mind, the author briefly reflects on his own experiences of being labelled with ‘Asperger’s’ or as being ‘autistic’ (a label he rejects), whilst thinking from a ‘dis/human’ perspective, a viewpoint that seeks to unpack and challenge the dominant concepts of what it means to be human in the twenty-first century. While it is difficult to avoid being labelled in ways that lead to discrimination and rejection, a dishuman perspective offers a viewpoint against the narrow versions of what it means to be human, relating to how disability can trouble the notion of what it means to be human and indeed inform the very meaning of what it means to be human.     

The politics of fear and empathy: emotional ambivalence in ‘host’ children and youth discourses about migrants in Cyprus

This article looks at the emotion discourses among 30 Greek-Cypriot children and youth interviewees when they describe their feelings about migrants in Cyprus. It looks at how migrant representations and narratives are highly emotional constructions that children and youth utilize to make sense of their views about how migrants are different or similar to themselves. In particular, the article focuses on the simultaneous contradictory positions and feelings of fear and empathy. Two important implications for intercultural education are discussed. First, it is suggested that it is valuable to acknowledge that the emotion work required from ‘host’ children and youth in their interactions with migrants should not be taken for granted. Second, rather than painting a ‘negative’ or ‘positive’ image of children and youth’s responses to migrants – which categorizes children and youth in simplistic ways – it might be more productive to examine how their emotions are linked to ambivalent discourses and inform actions in negotiating the presence of the other and one’s sense of belonging.     

Boundary Labor and the Production of Emotionless Commodities: The Case of Beef Production

This study examines cattle producers' work in conventional U.S. beef production. Producers express emotional connection to cattle, but also treat cattle as economic assets. Balancing these perspectives is central to their work. This article introduces the concept of “boundary labor” to describe the way producers' emotion management separates cattle physically and emotionally from products derived from their bodies. Producers have three central emotional skills that make this labor possible. They include (1) a sense of responsibility, (2) sentiments of dominion, and (3) faith in the cycle of production.     

How is a sense of well-being and belonging constructed in the accounts of autistic adults?

This small-scale exploratory study sought to develop an understanding of the meaning of well-being and social belonging as represented within the narratives of adults on the autism spectrum. Employing an interpretivist approach facilitated the investigation of potential contributory factors to these lived experiences in order to inform further research regarding both this topic, and service provision for adults on the autism spectrum. The project involved a thematic analysis of issues of the magazine Asperger United (AU). Four broad main themes were identified: meeting personal needs, living with the consequences of an ‘othered’ identity, connection and recognition, and relationships and advocacy. Autistic adults reported many barriers to feeling that they belonged in a number of social spaces and the detrimental effect this had on their wellbeing. Fundamental to positive narratives of wellbeing, were feelings of connection and recognition from others and positive accepting relationships, with autistic-led spaces, particularly the Autscape conference, being frequently cited as of central significance in increasing feelings of wellbeing and belonging. This study has demonstrated a need for less focus on remediation and more on limiting the social isolation of autistic people.     

Exploring Facebook: Attachment Style and Nonverbal Message Characteristics as Predictors of Anticipated Emotional Reactions to Facebook Postings

The present study investigates people’s perceived likelihood of experiencing negative emotion in response to a potentially jealousy-inducing Facebook wall post that was ostensibly sent by a rival. Facebook messages were varied so that participants (n = 821) viewed a message containing text only or text plus either an attractive or unattractive photo of the sender, a winking face emoticon, words in all capitals, or triple exclamation points. Participants were then asked to indicate the degree of negative emotion they would feel if they saw this message on their romantic partner’s Facebook wall. The addition of wink-face emoticons and physical attractiveness cues in a Facebook wall post contributed to differences in likely experienced emotion. Participants also reported a greater likelihood of experiencing negative emotion if they were high in preoccupied attachment and low in dismissive attachment. Finally, women reported being more likely to experience negative interpersonal affect in response to the Facebook post than did men. Implications for the role nonverbal cues play in computer-mediated contexts, such as Facebook, are discussed.     

Time to look in/at anger: considerations on the position and policing of young people’s anger

Mental and emotional well-being is steadily overtaking physical difficulty as the biggest health challenge facing young people. As a result, young people’s emotional well-being and needs are a significant concern within contemporary youth studies. However, the intricacies of ‘managing emotion’ have been somewhat neglected in the context of youth studies. In particular, the role of discourses of emotional well-being to produce ‘feeling rules’ [Boler, M. 1999. Feeling Power: Emotions and Education. Florence, KY: Routledge], to discipline, and to restrict expressions of emotion has been unconsidered. This article explores this problematic further with the intention of provoking a larger concentration on relationship between the policing of emotion and youth well-being discourses. Specifically, it focuses on anger as one of the emotions that young people are encouraged to move away from. It outlines how young people’s right to be angry is policed through the construction of angry subjectivities as characterised by incompleteness. It focuses on two – the unresolved subject and the unreasoned subject. Young people, who are already constructed as incomplete, are particularly vulnerable to this policing. Drawing on a range of theoretical interjections on the disciplining of ‘adult’ anger, the article explores the political importance of anger, how it is limited for young people, and the complexities of engaging with anger in the context of youth studies. Given the limited attention anger has attracted in youth studies literature, the article is intentionally provocative. However, as the article notes, this is a complex debate with many challenges and a much more detailed investigation is necessary.