Re-Thinking Autism

Diagnosis, Identity and Equality

Sami Timimi, Rebecca Mallett, Katherine Runswick-Cole

• Publisher: Jessica Kingsley Publishers
• Year: 2016
• Print ISBN: 9781849055819
• eBook ISBN: 9781784500276
• Topic: Psychology
• Subtopic: Autism Spectrum Disorders
• Index: Psychology

Challenging existing approaches to autism that limit, and sometimes damage, the individuals who attract and receive the label, this book questions the lazy prejudices and assumptions that can surround autism as a diagnosis in the 21st Century.

Arguing that autism can only be understood through examining 'it' as a socially or culturally produced phenomenon, the authors offer a critique of the medical model that has produced a perpetually marginalising approach to autism, and explain the contradictions and difficulties inherent in existing attitudes. They examine and dispute the scientific validity of diagnosis and 'treatment', asking whether autism actually exists at the biological level, and question the value of diagnosis in the lives of those labelled with autism. The book recognises that there are no easy answers but encourages engagement with these essential questions, and looks towards service provision and practice that moves beyond a reliance on all-encompassing labels.

This unique contribution to the growing field of critical autism studies brings together authors from clinical psychiatry, clinical and community psychology, social sciences, disability studies, education and cultural studies, as well as those with personal experiences of autism. It is essential and challenging reading for anyone with a personal, professional or academic interest in 'autism'.

PART I

WHAT IS AUTISM?

CHAPTER 1

UNDERSTANDING THIS THING CALLED AUTISM

Katherine Runswick-Cole

INTRODUCTION

It seems popular these days to ‘go on a journey’. In the UK, television schedules are awash with reality shows where competitors take to the dance floor, or to the ice rink, or even to the jungle, to construct a ‘journey narrative’ in their efforts to win the show. Here, I want to sketch out a different kind of journey – with no prize to win, apart from, perhaps, a shift in understanding. I’m going to talk about my journey with autism. This is, I suppose, a theoretical journey, a journey that begins with assumptions of autism’s pathology, tragedy, deficit and lack but then moves through a rejection of medicalised and tragic discourses of impairment, to a continuing love affair with the social model of disability (Goodley 2011) through a brief flirtation with the neurodiversity movement (Ortega 2009) and finally, and controversially perhaps, to my current view that autism is a contemporary cultural phenomenon so that labelling people with it is no longer helpful (Goodley and Runswick-Cole 2012; Mallett and Runswick-Cole 2012; Timimi, Gardner and McCabe 2010).

THEORETICAL JOURNEY

Theoretical journeys are sometimes seen as controversial in my academic disciplinary home (disability studies), particularly in a context of economic austerity where there is a strong contemporary urge by some within academia to get back to either the material ‘basics’ of disablism (Barnes 2003) or to recognise the ‘devastating reality’ of impairment (Shakespeare 2006). And yet, it is my personal and professional relationship with what I describe as this thing called ‘autism’ (Mallett and Runswick-Cole 2012) that drives the writing of this theoretical journey, not simply a love of theory for theory’s sake, but a desire to harness theory for its disruptive and transformative potential in people’s lives (Goodley and Runswick-Cole 2014). My relationship with autism is framed by my position both as a mother of a child labelled with autism and as a university researcher in the field of critical disability studies in the UK.

ETHICS

I begin my journey, however, with a dilemma. As I describe below, my journey with autism pre-dates the birth of my son, but the fact that he has been labelled ‘autistic’ is certainly the reason that I’m writing about autism here. I have written elsewhere (Ryan and Runswick-Cole 2008) about the struggles some mothers of disabled children face as non-disabled mother-researchers, occupying a liminal space, neither disabled researchers nor ‘proper’ mothers. Mothers of disabled children find themselves in a troubling space; they have often been vilified by the disabled people’s movement as oppressors of their disabled children while simultaneously being pathologised by the professions as ‘grief stricken’ or ‘in denial’ in ‘coming to terms with’ having a child who is marked as deviant or disordered (Ryan and Runswick-Cole 2008). As mother-researcher, I face a dilemma: how much should I reveal about either my status as a mother or about the (private) life of my child? I know that being the mother of a disabled child has influenced the way I carry out research, not least the way in which I make relationships with other parents of disabled children and, indeed, with disabled children and young people. Yet, I’ve been cautious in talking and, even more so, writing about my status as mother-researcher. This is partly for fear that my research won’t be taken ‘seriously’ in (often male-dominated) academia or that, even in the context of qualitative research that pays attention to the ‘positionality’ of the researcher, my work will be dismissed as ‘biased’ and ‘partisan’.

As a mother writing about a child labelled with autism, I follow in numerous others’ footsteps. Well-known examples include Jacqui Jackson (2004) and Charlotte Moore (2004) who have both published popular memoirs documenting the lives of children labelled with autism. More recently there has been an explosion of ‘mommy blogs’ (Morrison 2011). Mommy bloggers document their domestic lives in detail, including information about their children, and share this online. In the United States, popular bloggers make money by placing products in their blogs and receiving payment from sponsors. In the United Kingdom, there are a number of ‘mommy blogs’ where parents of disabled children talk about their lives. Recently, the ethics of blogging about family life have also been the focus of some academic interest. Yet, Archer and Pettigrew’s (2011) study, based in Australia, found that about 70 per cent of the ‘mommy bloggers’ thought there were ‘no ethical issues’ in blogging about family life (as long as they were not paid by sponsors to write the blog).

In contrast to the response of the Australian ‘mommy bloggers’, it seems to me that there are several ethical issues for mothers in talking about their children in the public domain. First, there is the question of consent. Is it possible for a mother to gain consent from their own child given the power imbalances implicit in the relationship? How can mothers maintain their children’s anonymity while at the same time claiming authorship of the blog, book or chapter? How can I protect my child’s confidentiality, while at the same time talking about autism?

At first, I thought it might be possible to resolve this dilemma by arguing that my son, although labelled with autism, is not this thing called autism. Yet, it has proved impossible for me to talk about autism without reference, at times, to what people have said to or about my son or indeed what he has said himself. So I approach writing this chapter carefully and cautiously with the belief that the ethical risks to my son and to other people labelled with autism are greater if I stay silent. I acknowledge that others may not agree with this decision.

You may have noticed that in the discussion above I referred only to mothers of children labelled with autism. Fathers are often the absent presence in accounts of family life and, indeed, as the story-tellers, and so it is in my own account. This absence is not, perhaps, surprising given that it is the mother–child dyad that is the focus of attention in global North psychology and psychiatry. As Nadesan (2005) reveals in her account of the social construction of autism, the history of autism is inextricably entangled with a history of mothering. Nadesan’s exploration of the conditions in which it became possible for autism to be produced is as much an exploration of the socio-cultural production of mothering as it is of autism. Even in the twenty-first century, the ghost of Bettelheim’s (1972) ‘refrigerator mothers’ continues to haunt the lives of mothers of children labelled with autism.

THE JOURNEY BEGINS

Like most people in the UK in the late twentieth century, I imagine, I had a vague knowledge of what autism was before I became a mother, three weeks earlier than expected, on a cold winter day in the late nineties. I’d seen the film Rain Man (1988). Autism was tragic, frightening, to be avoided, someone else’s world, someone else’s problem. In the 1990s, I was an early years teacher in the south of England and a child came into the reception (entry) class at the school where I worked who was ‘autistic’. This was the first time that this had happened at a school I had worked in. The child’s parents were very keen for him to be included in mainstream school; the head teacher was too, the staff was less welcoming. As I was pregnant, a colleague suggested I should stay away from the child at playtime: ‘He is volatile… He might kick you… He might hurt the baby.’ I took her advice. Shortly afterwards, we had our baby son – perfect, ten tiny fingers, ten tiny toes…and soon to be labelled autistic.

In the first few months and years of his life, autism remained someone else’s concern and someone else’s problem – although the labels ‘bottom shuffler’, ‘very late walker’, then ‘developmental delay’ and ‘dyspraxia’ should have sounded the alarm that all was not ‘as it should be’. But I had yet to be enculturated into the world of autism; I didn’t know the ‘signs’. I didn’t know that I should have been looking for the ‘red flags’ of the disorder (McGuire 2011). I hadn’t picked up on the subtle, and not so subtle, hints from professionals anxious about hitting me with the ‘autism’ word. So it fell to an educational psychologist to ask, when my son started school: ‘Have you heard the word “autism” before?’ Of course I had: I’d seen Rain Man, I’d seen (from a safe distance) the autistic child in the playground and I was in the middle of a psychology degree, I’d read the chapter on autism. How could autism be in any way relevant to my world?

It wasn’t until a year later that the diagnosis was confirmed. A clinical psychologist visited me at home (while my husband was at work) to tell me that my son did, indeed, have ‘Asperger Syndrome’ (interestingly that diagnosis changed over time and he has since been labelled with autism). I remember asking, urgently, ‘Will he live independently?’ The clinical psychologist replied that four out of five children diagnosed at this age [five] would not. I don’t remember any help being offered; I remember nothing more than a gloomy prognosis. I was sure it couldn’t be right. Grief-stricken and in denial, as psychologists would have doubtless have described me (Lazarus and Folkman 1994), I wasn’t yet prepared to give up my son to the diagnosis of autism.

BECOMING AN AUTISM EXPERT

But the word was there now, troubling me, and I was curious. So, like many other parents of children given a diagnosis of autism, I read and I read. Tony Attwood (2007), an expert in Asperger Syndrome, was, I discovered, essential reading. Claire Sainsbury (2009) and Luke Jackson (2002), two people who identify as autistic, gave the ‘insider’ perspective. Jacqui Jackson (2004) and Charlotte Moore (2004) gave the mother’s point of view. Carol Stock Kranowitz (2005) taught me about sensory integration difficulties. And, slowly but surely, I learned about autism and its cultures.

Eventually, I was referred to a support group for parents of ‘autistic children’, which I was keen to attend. But I remember being asked by another mother, in the waiting room before the first meeting, ‘How bad is he?’ I hesitated, I didn’t know how to answer the question, and so she clarified, ‘Does he speak?’ ‘Is he toilet-trained?’ ‘Is he violent?’ ‘Are your other children autistic?’

Despite my initial reticence, through my reading and my interactions with other mothers, I was seduced by the autism culture. I began to speak the language of autism too and to recognise behaviours such as ‘stimming’ and ‘meltdowns’ that I had previously thought (naively?) were arm-flapping and being cross. I learnt the stories of the culture, I knew about the triad of impairments (impaired social and emotional relationships, impaired language and communication skills, and restricted imagination), lack of Theory of Mind, weak central coherence and the details of the Sally–Anne test (Baron-Cohen, Leslie and Frith 1985; McGuire and Michalko 2009). I began to look for autistic pathology in family members to spot it in my husband and in myself. I learnt about the great figures in history and contemporary culture who were ‘autistic’ – Einstein, Bill Gates, Sherlock Holmes (Frith 2003). And yet, I could never quite absorb the autism canon completely; I didn’t take the speech therapist’s advice to make him ‘look at me’.

AUTISM IS NOT THE PROBLEM

And then, through a friend, who also had a disabled daughter, I heard about the social model of disability and a love affair began! The social model sees disability as something imposed upon people with impairments; it is the result of social arrangements that oppress people with impairments (Oliver 1990). Social oppression theories of disability recognise disability not as an individual, medical problem but as the product of a disabling society that ‘is geared to, built for and by, and controlled by non-disabled people’ (Swain, French and Cameron 2003, p.2). The social model of disability has been hugely influential in the fight for equality for disabled people; it is a powerful ‘heuristic’ device or thinking tool (Oliver 1990) that has enabled disabled people and their allies to expose and challenge the discrimination they sadly continue to face. So I learned that what I had understood was wrong. Autism was not the problem; it was the systems, attitudes, and environments that disable people with autism that should be the focus of my concern. The social model gave me a tool, a hammer, with which to rain down blows against the disabling practices we as a family continue to be subjected to. A social model discourse underpins much of the current advocacy work I do for my son; I hold that hammer very tightly.

DIFFERENCE, NOT DISORDER?

A little while later, another moth...

Table of contents

• Cover
• Half Title
• Of Related Interest
• Title Page
• Copyright
• Contents
• Introduction
• Part I What is Autism?
• Part II Deconstructing Autism
• Part III Changing Practice
• Conclusion: Future Directions
• The Contributors
• Subject Index
• Author Index