OAARSN Book Review
Adults with Autism: A Guide to Theory and Practice. By Hugh Morgan, editor (1996).
This important book is a pioneering study of issues involved in effective support of adults with autism. As suggested by its subtitle, it relates the theoretical underpinnings to specific projects and practices. In her foreword, Geraldine Peacock describes this book as "a comprehensive introduction to the needs, philosophies and research... While adults with autism have many needs in common with other people with disabilities, the complexity of the condition...dictates that specific needs must be recognised and worked with if real progress is to be made. Adults with autism do not fit neatly into existing systems."
Adults with Autism is distinctive in several ways. First is the focus on adulthood, still very rare in the autism literature. Second is its assertion of the need to move beyond the "increasingly tired rhetoric of generic ideology and practice" so that those who plan and deliver services can "demonstrate understanding of the unconventional patterns of learning of people with autism." Another is the emphasis of the third attribute, often neglected, of the Triad of Impairments in autism spectrum disorders. Impairments in communication and socialization are more often usually, but the inflexibility in thinking and behaviour is shown to be critical in designing daily living programmes and support strategies. Fourth is the wealth of detail about particular individuals (whose real names are not used), practices and projects.
This book contains so much that an outline of chapters is useful.
Chapter One presents an international perspective on services for adults with autism, with evidence from Greece, England, Chile, India, Japan, Australia, Iceland, Luxembourg, Spain and Portugal. Progress just about everywhere is found to be slow and no country provides a full range of services sufficient to meet the needs of all adults with autism.
Chapter Two is a critique of "underpinning philosophy" and of "global values related to specific practice" including normalisation, quality of life, quality of relationships, teaching strategies, and independence. Hugh Morgan concludes that "the success or failure of individual adults with autism in society will depend more on the skilled networks of support... which accept and understand [their] specific perceptual difficulties ... and create the environments in which they can learn and experience everyday activities... Clearly normal practice by itself is not good enough for people with autism" (p.47).
Chapter Three describes the background and process of the Autism Quality Audit and Accreditation programme of the National Autistic Society (UK) in relation to the more than 70 local regional autism societies, most of which by the early 1990s had started or planned to start practical services. By 1995, at least 1,200 people were living in services registered under the NAS audit programme.
Chapter Four is particularly interesting in its concern with encouraging flexibility in adults with autism to address their difficulties with change, lack of spontaneity and initiative, and difficulties with creativity and imagination, as well as their stereotypical thought and behaviour. Strategies include creating anxiety-free situations, and teaching understanding and awareness so that adults can learn to attend to relevant meanings, and develop memory strategies and abilities to make choices. The authors of this chapter conclude that "we are not dealing with wilful stubborn behaviour (though it can sometimes appear like that), but with a core difficulty in having access to and reflecting on one’s own thinking... The real difficulty is in being aware of one’s own thinking and behaviour and thus having the ability to plan actions, monitor them, adapt them according to their effectiveness... and remember and apply them in new situations... We need to respect the fact that...they are doing the best they can within their own understanding and the resources available to them" (p.87).
Chapter Five explores the significance of attachment and loss, taking up the hypothesis that the lack of imagination directly and adversely influences how an adult with autism can cope with any process of change. Caregivers and staff (called practitioners in British autism services) "need to understand how and why attachments are formed, to plan the timing and sequencing of transitions." In addition, "people with autism usually have only a very limited number of close relationships and the loss of one of these may be catastrophic" (p.111).
Chapter Seven presents a model for supporting adults with autism to attend colleges of further education, while Chapter Eight report on the first three years of an innovative employment scheme in a rural area. Chapter Nine considers the physical health concerns of adults with autism, including the distress caused by malaise and medical examinations and procedures, as well as emotional disorders to which they are more subject than the general population. Chapter Ten is concerned with psychiatric and behavioural problems and pharmacological treatments.
In Chapter Eleven, Hugh Morgan appraises some of the shortcomings of traditional intervention strategies for tending to respond to symptomatic behaviour rather than appreciating the style of learning of people with autism as the basis for intervention. It is recognized that "symptomatic behaviour may derive from a mismatch between expectations arising from individual perception and the organisation of the environment around them." It is argued that we should help to enable people with autism to make sense of their world, recognizing their greatly restricted capacity to understand the social and communication rules of mainstream society. "Signposting" and alternative forms of communication are advocated. Practical guidelines are also offered for anticipating and responding to immediate challenging behaviour.
Chapter Twelve investigates the training needs of "practitioners" who work with adults with autism. Too often such staff are poorly supported, "leading to a particularly vulnerable client group." Training for practitioners in both residential and day centre settings should be planned strategically and focus on two levels of good care practice and autism-specific practice. Various initiatives for providing autism-specific training are outlined. Key topics needed in such programmes echo the main chapters of this book:
Finally, in the epilogue, some future trends in practice within the UK are noted—including support to families and to high-functioning adults with autism, influencing the public sector, respite services, practitioner training, "miracle cures," and the use new technologies to make the world more understandable.
For a later summary by the author of the underlying approach and main strategies needed in practitioner training: http://trainland.tripod.com/hugh.htm