Supporting Change in Autism Services

Bridging the gap between theory and practice

Jackie Ravet

• Publisher: Routledge
• Year: 2015
• Print ISBN: 9780415508278
• eBook ISBN: 9781136451515
• Topic: Education
• Subtopic: Adult Education

Supporting Change in Autism Services explores the theoretical and practical dimensions of improving service provision for children, young people and adults with autism. The core aim of the book is to identify and critically examine some of the key factors that either facilitate or inhibit the implementation of good autism practice at both practitioner level and workplace level. It shows practitioners and students how to successfully translate autism theory into practice across service contexts and showcases a range of practitioner case studies throughout the text in order to illustrate effective implementation.

Topics explored include:

• controversies and ambiguities in autism policy, theory and discourse;
• understanding autism in an inclusive context;
• enabling participation;
• making sense of behaviour;
• autism and interprofessionalism;
• strategic planning for autism friendly services;
• bridging the implementation gap

This book is essential reading for anyone interested in improving services for people with autism in the education, social care, health and voluntary sectors.

Chapter 1 Autism

DOI: 10.4324/9780203125670-2

Controversies and ambiguities

In order to set the context for this book, it makes sense to begin by exploring the nature of autism and the main theories that claim to explain it. In doing so, the many controversies and ambiguities associated with the condition, which can create confusion for practitioners, will be highlighted and explored. This discussion will help to explain why good autism practice can be difficult to implement.

However, before we start we must decide what to call the condition throughout this book and how to refer to those with a diagnosis. This is important because words are powerful. Whether we are aware of it or not, our words betray our attitudes and beliefs about autism, and thus have an influence on others and, crucially, on the autism community. It therefore matters very much how we label the condition and those who live with it.

The vast majority of books currently on the market refer to ‘autism spectrum disorder’ and to those with the condition as ‘autistic’. It might be argued that use of the term ‘disorder’ discriminates negatively against people with autism as it emphasises dysfunctionality and occludes strengths (Baron-Cohen 1). Similarly, it might be argued that to label people ‘autistic ’ is highly disrespectful since it suggests that their entire being and identity cannot be disassociated from their medical condition.

By contrast, throughout this book, and in a growing number of more recent publications, you will notice use of the terms ‘autism spectrum condition’ and ‘people with autism’. These terms are used to avoid negative language. The word ‘condition’ is, arguably, more value neutral than the word ‘disorder’, but at the same time it does not obscure the existence of a medical category or deny the reality of those with a diagnosis. Likewise, using the phrase ‘people with autism’ rather than ‘autistic people’ avoids the assumed association between autism, being and identity.¹

There has been much debate about the value and impact of these new terms and others like them (Roth 1), but there is currently no consensus as to which terms best apply. The debate will, doubtless, rage on for a time, until a critical mass of publications are using the new terminology and the old negative labels slip into disuse. It is important to be in the vanguard of this transition, given its profound implications for individuals with a diagnosis, and for research and practice in the field. The issue of labelling is explored in greater detail in chapter 2.

Autism spectrum condition: what is it?

This section must begin with a note of caution since we still do not know, with any certainty, what autism is or what causes the condition. However, this is not to imply that we have not learnt a great deal about autism since 1943 when the severe and complex form of autism was first identified and delineated by Leo Kanner, an American paediatrician, and 1944 when the more subtle, high-functioning form of autism was first investigated and named by Hans Asperger, an Austrian Psychiatrist (see box 1.1). The point is that much of what we allegedly ‘know’ has continually been challenged, refined or revised ever since, with direct implications for perceptions of the condition, the forms of support we provide and the interventions we design.

Box 1.1: Early descriptions of autism

Leo Kanner

Kanner was an American psychiatrist who wrote ‘Autistic Disturbance of Affective Contact’ (1943), based on a five-year study of eleven children whom he described as ‘odd’ and as having an ‘inability to relate themselves in an ordinary way to people and situations from the beginning of life’.

Kanner produced a nine-point scale of the nuclear features of the condition:

• Inability to develop relationships
• Delay in acquisition of language
• Non-communicative use of spoken language
• Delayed echolalia
• Pronominal reversal
• Repetitive, stereotyped play
• Maintenance of sameness
• Good rote memory
• Normal physical appearance

Hans Asperger

Asperger was a Viennese paediatrician who wrote ‘Autistic Psychopathies in Childhood’ (1944, translated by Wing 1), in which he described a number of boys who found it difficult to ‘fit in’ despite a seemingly good level of ability and fluent speech. The boys had significant difficulties with:

• Social language interaction
• Repetitive steroetypical behaviours
• Intense fixations
• Limited understanding of gesture and facial expression
• Poor motor co-ordination

There is clear overlap between Kanner’s and Asperger’s observations. They both borrowed the term ‘autism’ from psychiatrist Eugen Bleuler, who first used it in 1911 to describe the social withdrawal associated with schizophrenia. Literally translated, the word autism means ‘selfism’.

After the publication of Kanner’s work, many other researchers began to develop point-counting systems for the identification of autism (e.g. Rutter et al. 1971, Gillberg & Gillberg 1).

For example, from the 1940s right through to the 1970s, there was considerable support for the theory that autism was a psychogenic disorder caused by poor parenting and associated, in particular, with a cold, unloving ‘refrigerator mother’ (Bettelheim 1967). However, research accumulating in the field of neurology during the 1960s and 1970s, particularly that associated with the early work of Rimland (1964), gradually overshadowed and superseded this theory, though not before it caused considerable harm to a large number of families. By contrast, the latest research posits that autism is essentially a neurodevelopmental disorder, i.e. a disorder of the developing mind and brain caused by a genetic anomaly that is somehow activated by an environmental trigger as yet unidentified (Lathe 1). There is speculation that the trigger, or triggers, might be linked to trauma during pregnancy or birth, infection, hormonal influences, or to a range of pollutants, such as heavy metals in water or toxic chemicals in food. However, as yet, no clear consensus has emerged on the matter. The idea that the MMR vaccine is a key trigger has now been largely rejected (Gerber & Offit 2012), though some parents continue to insist upon a link (Hilton et al. 1). Whatever the nature of the trigger, it is speculated that this genetic pre-disposition and environmental trigger somehow ‘act on the susceptible brain to produce ASD [sic]’ (Lathe 1, p. 211). It is these brain changes that are thought to alter the developmental pathway of the child with autism and account for the behavioural manifestations of the condition discussed below.

Though the precise mechanism that underpins this causal sequence is still far from understood, autism ‘is now firmly established as a disorder of the developing mind and brain’ (Frith 2003, p. viii). Indeed, brain research utilising new scanning technologies has lent considerable weight and legitimacy to this claim (Boucher 1). Much of the brain research emerging in this area focuses on the unusually large size of the brain in very young children but the lack of brain growth in middle childhood and thereafter (Courchesne et al. 1). Atypical connectivity also seems to be characteristic of the autistic brain (Courchesne 1, Courchesne & Pierce 1). Neural changes within the following areas have been noted by several different researchers:

• Prefrontal cortex – responsible for social perception, planning and strategising
• Cerebellum – linked to motor control and associative learning
• Limbic system – associated with memory, emotion generation and recognition
• Corpus callosum – responsible for information sharing across the two hemispheres

(Just et al. 1, Sokolowski & Corbin 1, Allely et al. 1, Broek et al. 1 and Edmonson et al. 1)

It is not within the limits of this book to explore this research in any detail. However, what is interesting about the findings above are the apparent correlations between the areas of the brain that appear to have undergone neural changes, and those responsible for the various functions that operate differently in individuals with autism. Researchers therefore posit a causal connection between the two (Muller 1).

Yet, fascinating and exciting though this research is, it is still in its infancy and raises many questions (Boucher 1). For example, it already seems clear from the research that disconnectivity in autism does not follow a particular and consistent pattern but takes various forms with various effects on different neural circuits within the growing brain – some impacting on communication, some on memory, others on emotions, and so on (ibid.). It is uncertain how these different forms arise and whether they are related or entirely discrete in terms of their etiology (ibid.). If they are discrete, this suggests that the characteristics they impact upon are independent of each other. If so, why do they appear to be related when expressed in everyday behaviour (ibid.)?

Disconnectivity theory does not, therefore, provide a comprehensive explanation of all of the characteristics of autism and its various forms. However, it provides another tantalising piece of the autism puzzle. A key difficulty for practitioners lies in making sense of, and evaluating, the validity of this highly technical and specialised medical research, and understanding how it should inform our perceptions of the condition. Keeping up with the fast pace of change within the field is also an ongoing challenge.

To complicate matters further, we must remind ourselves that the understanding of autism explored within the British and European research literature is highly ‘situated’ in a socio-cultural sense, as well as temporally. Thus, though the manifestations of autism will be the same in any context, the understanding of the condition that prevails in Asian or African cultures may be very different to that which prevails in white European cultures because of the divergent underlying values and beliefs that shape them (Taylor Dyches et al. 1).

For example, in a small-scale study of beliefs relating to autism and causation amongst Asian and white British families, autism was largely understood to be caused by biomedical factors like genetics or birth trauma amongst the European parents, whereas it was largely attributed a divine or magical providence, like God’s will or punishment, amongst Asian parents (Mockett et al. 1). Thus, autism is by no means a unitary phenomenon but is subject to multiple interpretations.

Even within the UK autism research community, definitions and theories advanced by different researchers may vary in their detail, depending on researcher values and beliefs and the particular discipline from which their theories emerge. This adds yet another layer of interpretation and complexity to the issue. Years ago, Williams (1997) summed up the changing concept of autism and her words still hold true today:

Over the years ‘autism’ has been considered a form of spiritual possession, a mental illness, an emotional disturbance, a personality disorder, a communication disorder, a mental handicap, a social communication disorder, a developmental disability and more recently, an information processing problem, a movement disorder, or a sensory or perceptual condition and professionals of different sorts evolved from these camps.

(p. 7)

To add to the complexities above, there is also the problem of how autism is understood in the public sphere – especially the media. It is almost impossible to pick up a newspaper and not be confronted with a news headline announcing the latest theory of autism. Many of these reports are pure sensationalism. The theories they publicise generally come and go quickly and are never heard of again. This is either because the research they are based upon is never replicated and confirmed and is therefore quickly forgotten – like the idea that autism is caused by too much television (Waldman et al. 1), or because further analysis shows the research to be insubstantial, misleading or ill conceived in some way – like the idea that autism is caused by the MMR vaccination (Wakefield et al. 1). A problem for the public is how to distinguish speculative claims from more authoritative research. Unfortunately, exposure in any of the media ensures t...

Table of contents

• Cover Page
• Half-Title Page
• Title Page
• Copyright Page
• Table of Contents
• Acknowledgements
• Introduction
• 1 Autism: controversies and ambiguities
• 2 Understanding autism in an inclusive context
• 3 Theory into practice
• 4 Making sense of behaviour
• 5 Autism and interprofessionalism
• 6 Strategic planning for autism friendly services
• 7 Supporting change: bridging the implementation gap
• Index