Educational Provision for Children with Autism and Asperger Syndrome

Meeting Their Needs

Glenys Jones

• Publisher: David Fulton Publishers
• Year: 2013
• ISBN:
  9781136611643
• Edition: 1
• Topic: Education
• Subtopic: Education General

The range of educational options available to a child with Autism and Asperger syndrome is broad, but choosing the right path can often be a complex task for all involved. This book provides information and advice for professionals and parents making crucial decisions about meeting the needs of children with autistic spectrum disorder. It covers the range of intellectual ability from those having severe learning difficulties to those of above average intelligence. Practical advice for those working with children from preschool to post-16 is given on: choosing the most appropriate educational placement; making decisions on which educational interventions to follow; creating an effective educational environment; working with staff and other children to maximum effect; writing effective individual education plans; working with parents and families; enabling a smooth transition between classes and stages of education; and life beyond school.

Chapter 1
Autistic spectrum disorders and
implications for education

Introduction

During the last 20 years, knowledge and understanding of autism and Asperger syndrome have grown tremendously. Valuable information has been provided by adults with autistic spectrum disorders (ASDs), and professionals now attempt to understand autism from an ASD perspective, rather than solely speculating from the outside on why individuals behave as they do. Those with ASDs are important collaborators in designing provision and services (Peeters, 2000). In writing this book, I have drawn on my experiences from research, from my work as an educational psychologist and from teaching sessions with students, teachers and parents. In addition, time spent with adults with ASDs, particularly with Ros Blackburn and Richard Exley, has influenced my perspective and thinking. My colleague, Rita Jordan, has also provided many valuable insights from her many years of experience within the field of autism.

Elizabeth Newson's work and my discussions with parents have shown the huge importance of taking the parents' knowledge and perspective into account. Conversations with parents have shown that having a child with an ASD significantly affects the lives of families, but often in very positive ways. Parents say that they have acquired skills in living with their child, and in negotiating with professionals and supporting other parents, that they would never have developed otherwise. Many have seen the value of living with a child who brings a different perspective to their lives, whilst acknowledging the very difficult times they have faced as a family. Their energy, skills, determination and love have done much to develop provision and services in the UK. My research and teaching has enabled me to visit many schools to observe and discuss practice. It is heartening to meet staff and professionals who question their work and seek out information and who are committed to making the best provision they can for children with ASDs. Practice in many schools has improved tremendously over recent years and there are many more opportunities for exchanging information and ideas. Guidelines on good practice in ASDs are currently being produced by the Department for Education and Skills (DfES, in press), for policy makers and practitioners, and these should be very useful. There is still much to be done though, in reaching staff in schools who are not yet familiar with the very particular needs of pupils with ASDs and who struggle to teach them effectively. Support for families too is very limited, in many areas, particularly outside of school hours. Parents and siblings are often emotionally and physically exhausted from the constant demands and the harrowing situations they experience, which may be unseen and not voiced, as families have little energy left, or few resources, to convince others that they need support.

Aims and plan of the book

The main aim of this book is to consider educational provision and interventions for pupils with ASDs and the issues which arise when making decisions on these. A consensus is developing on what makes good sense in the education of children with ASDs and the aim is to share knowledge and ideas and pose questions which still need to be explored to enable practitioners and parents to reflect on and enhance their work. It is written for all those working in schools and education authorities, as well as for professionals working in health, social services and voluntary agencies. For all pupils, the main purpose of education is to develop understanding and skills and the ability to apply this knowledge. In the process, it is important that staff develop an effective relationship with, and an understanding of, the particular needs and learning style of each pupil. For pupils with ASDs, this relationship is crucial and needs to be achieved before any effective teaching and learning can occur. On the whole, normally developing children are able to relate effectively to teaching staff and are ready to learn. For pupils with ASDs, though, the relationship is often harder to establish. Given the problems these children experience in understanding communication and social behaviour, teaching staff need to create an environment which is calm and where it is clear what is required. Knowledge and understanding change in the light of research and practice, and ways to define, identify and diagnose ASDs continue to be modified and developed. A brief summary of the current state of knowledge on ASDs is therefore given in this chapter to serve as a background for chapters which follow.

Current understandings of autistic spectrum disorders

Individuals with ASDs differ from each other, reflecting differences in the severity of their autism, their intellectual ability and any additional difficulties. Their personality and experiences, in terms of the response of staff, their family and the wider community will also have an impact. Each pupil needs to be understood and responded to as an individual and caution is needed about making assumptions on the ASD population as a whole. Having said that, it is helpful, initially, to consider the general areas in which a pupil with an ASD differs from other children, to direct staff and parents in assessment and teaching. Common principles are emerging from research and practice which make sense for the majority of pupils with ASDs and which are considered to underpin good practice.

Definitions of autistic spectrum disorders

The term autistic spectrum disorder was suggested by Lorna Wing in 1996 (Wing, 1996a). It is used to describe individuals who have features in common, but who might be quite different from each other. Different subgroups within the spectrum have been described, based on differences noted in behaviour (e.g. Asperger syndrome; high functioning autism; semantic pragmatic disorder (SPD), atypical autism and pervasive developmental disorder - not otherwise specified (PDD-NOS)). All the children in these subgroups share difficulties in three areas to a greater or lesser extent, which are commonly referred to as the triad of impairments (Wing, 1988). The children are affected in:

• their ability to understand and use non-verbal and verbal communication
• their ability to understand social behaviour, which affects their ability to interact with children and adults
• their ability to think and behave flexibly.

There is increasing evidence too, that for some individuals, their sensory perception and responses might be different. Some individuals appear to be over-sensitive and others seem under-sensitive, relative to normally developing children.

Understanding and using non-verbal and verbal communication

Some children with ASDs are delayed in acquiring language, but others develop speech at the usual age. It is estimated that between a third and one half of children do not develop speech (Prizant and Wetherby, 1993) and so need to be taught an alternative means of communication. Other children may develop the ability to speak in complex sentences with an elaborate vocabulary, but may not be able to use this to communicate effectively. Whereas children with other disorders such as severe hearing loss, a specific language disorder or severe learning difficulties will all have communication difficulties, they usually appreciate the purpose of communication and do their best to communicate using gesture, facial expression and other body language. Children with ASDs, however, usually do not understand the purpose of communication and rarely use gesture, facial expression or tone of voice effectively to convey meaning. Individuals with ASDs may find interacting with other people aversive as they do not know how to respond and find others' approaches confusing and anxiety-provoking. They might move away, block out the other person or, in some cases, hit them. Observations of a child's attempts to communicate are often significant in determining whether or not that child has an ASD. All children with ASDs will have difficulty in the pragmatics of language, that is, in the social and functional use of language. They will have semantic difficulties too in understanding the meaning conveyed and the non-verbal elements such as tone, gesture and facial expression.

In summary, in terms of communication and language, a pupil with an ASD:

• may not understand the purpose of communication
• may initiate very little communication with others
• may not show or share an interest with others

• may be delayed in learning to speak or speech may not develop at all
• may make limited or inappropriate use of gesture, eye contact, facial expression and body language
• may have a good vocabulary and speak fluently but not communicate effectively
• may talk at, rather than with, the person
• may have problems in the social timing of conversations.

Social understanding and interaction

The nature of the social difficulties in ASDs is probably the most defining feature and potentially the most disabling. Fundamental difficulties in understanding social behaviour, reading social signals and responding appropriately in social encounters are key characteristics of ASDs. As such, it is important to investigate the child's social behaviour for diagnostic purposes. For individuals with ASDs, of all ages, and at all levels of intellectual ability, their social development is out of line with their general ability. Clearly, many other children with SEN also have problems in relating effectively to others, because of early deprivation, sensory problems or learning difficulties. However, these children generally appreciate that other people have different interests and needs, and learn to understand and read social signals from an early age. They pick up social rules and conventions incidentally, and can adapt these, seemingly effortlessly, in response to the social messages they receive. Individuals with ASDs struggle to understand social behaviour and they comment that other people seem to do things intuitively, whereas they have to work things out consciously and scientifically, which is very effortful (e.g. Grandin, 1995; Gerland, 1997). Those without ASDs are able to process social information whilst performing other tasks. Those with ASDs often need to give their sole attention either to the task or to the social aspect of the encounter. For example, using a calculator outside a social encounter might pose no problems, but operating this successfully when serving a customer might prove very difficult.

The behaviour of normally developing children is increasingly influenced by what their family and peers might think. This is not so for many with ASDs as they are unaware of or have no regard for the social consequences. This can lead to conflict and embarrassment when they do not respect the usual social conventions. Some with ASDs have found a useful analogy is to consider that they have arrived on Earth from another planet and so do not understand Earth rules (Sainsbury, 2000). Accordingly, a website called, Oops, wrong planet syndrome has been set up by individuals with ASDs.

In summary, in terms of social understanding and social behaviour, a pupil with an ASD:

• may actively avoid other people
• may show more interest in objects than people
• is less likely to share in the interests of other people
• is less likely to refer to others in play
• may make physical contact with others but on his/her terms
• may find turn-taking difficult
• may fail to read and understand others' feelings and needs.

Thinking and behaving flexibly

Children with ASDs often do not play with toys in a conventional way, and may spin or flap objects or watch moving parts of toys or machinery for long periods, with intense interest and excitement. Their play tends to be isolated or alongside others. They may imitate certain scenes but not share in the imaginative play of others. Some develop a special interest in a topic or hobby and want to spend much time engaged in its pursuit or in conversation about it. This can be very useful for staff and parents, as the interest can become an incentive to engage in activities which the child views as less desirable. It can also develop skills and activities which lead to leisure pursuits or successful employment. Care has to be taken not to be derogatory about these interests, where children are made to feel the activity is not worthwhile or that it is a problem. Obviously, problems can arise if interests are pursued to the exclusion of all else, but the places and time spent on these can be managed by others. The special interest can be a driving force for the individual, encouraging them to get up in the morning and to leave the safe world of their home.

Some individuals with ASDs can show an extreme reaction to a change in a familiar routine. Given their difficulties in understanding what to do in a particular situation, it is not surprising they feel anxious when this is changed. The desire to stick to the familiar may arise out of the need to know what is going to happen. Whereas most children without ASDs can think through the implications of a particular change and generate coping strategies, a child with an ASD has great difficulty in mentally talking through possibilities. A sense of panic can ensue which may result in challenging behaviour. Where possible, staff and parents need to warn the child about the change and tell them what to do within the changed routine.

Some descriptions of the triad suggest that those with ASDs lack imagination, but this is not strictly true (Jordan and Powell, 1995). Some of the activities in which individuals engage and the comments they make are highly creative. Spending time in their company can be inspiring and refreshing as they see and comment on aspects of everyday environments that others have screened out. They do, however, have difficulties in social imagination. They may engage in pretend play but have problems in developing a story with others. In terms of literature, they are likely to prefer factual books and those with a clear story line. Many children with ASDs enjoy watching cartoons on video and repeatedly play back, often clips of certain actions. Some parents have major difficulties in managing their child's video viewing (Nally et al., 2000) and this can be a significant source of stress. Against this, watching videos can be a relaxing leisure activity for some and may be put to educational use. One family successfully created an educational video for their son, Adam (Zihni and Zihni, 1996). They illustrated the meanings and sounds of key words and videoed specific situations where he needed to communicate, using his sister and other family members as models (e.g. going to the toilet at night; accidentally hurting himself). His parents played the same scenes repeatedly to Adam and felt his understanding and communication developed as a result over a two-year period.

In summary, in terms of flex...