the Foundation for People with Learning Disabilities AUTISTIC SPECTRUM DISORDERS A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Rita Jordan, Glenys Jones & Hugh Morgan The Mental Health Foundation is the UK’s leading charity working for the needs of people with mental health problems and those with learning disabilities. We aim to improve people’s lives, reduce stigma surrounding the issues and to promote understanding. We fund research and help develop community services. We provide information for the general public and health and social care professionals. We aim to maximise expertise and resources by creating partnerships between ourselves and others including Government, health and social services. Since October 1998, The Foundation’s work with people with learning disabilities has been carried out under the name, the Foundation for People with Learning Disabilities. It remains part of the Mental Health Foundation. The Foundation for People with Learning Disabilities would like to thank The Shirley Foundation for funding this publication. Contents Contents Introduction ___________________________________________________ 2 Section 1: Definition, Identification and Diagnosis ________________ 3 What is an Autistic Spectrum Disorder? _________________________ 3 The Triad of Impairments in Autistic Spectrum Disorders _________ 3 Levels of Explanation __________________________________________ 5 Individual Differences __________________________________________ 6 Associated Conditions __________________________________________ 6 Identification and Diagnosis ____________________________________ 8 Prevalence ___________________________________________________ 10 Aetiology _____________________________________________________ 11 Prognosis ____________________________________________________ 11 Section 2: Services ____________________________________________ 13 Introduction __________________________________________________ 13 Health - An Overview _________________________________________ 13 Early Interventions ____________________________________________18 Education ____________________________________________________ 19 Evidence-based Characteristics of Successful Interventions ______ 25 Social Services Support _______________________________________ 26 Section 3: Quality in Services for Children with Autistic Spectrum Disorders ______________________________ 29 Key Features for Quality Services ______________________________ 30 Involving Parents and Children in Services _____________________ 33 Conclusions __________________________________________________ 34 Appendix 1: The Aetiology of Autistic Spectrum Disorders _______ 36 Appendix 2: Specialist Provision in the UK for Autistic Spectrum Disorders ________________________________ 39 References and Further Reading _______________________________ 45 Useful Contacts _______________________________________________ 48 About the Authors ____________________________________________ 49 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 1 ntroduction Introduction This guide is for commissioners and providers in education, health, social services and the voluntary/independent sectors. Its purpose is to serve as a brief guide to autistic spectrum disorders, and developments in education and social welfare with respect to those disorders. It aims to help authorities fulfil their obligations under the United Nations Convention on the Rights of the Child (1989) and to provide a range of services to meet the needs of the individual child with an autistic spectrum disorder. 2 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Definition, Identification and Diagnosis Section 1: Definition, Identification and Diagnosis What is an Autistic Spectrum Disorder? Autistic spectrum disorder is the name given to a range of developmental disorders that share certain characteristics. It includes the core condition of ‘autism’, and categories such as Asperger’s syndrome (AS), used for those without language delay and with average or above levels of intelligence. Children who share the following triad of developmental impairments also share needs leading to similar practical and service implications (Special Educational Provision, DfE, 1996; Children in Need Provision, Children Act, 1989). The Triad of Impairments in Autistic Spectrum Disorders Social understanding and interaction: This is the most characteristic developmental disturbance in autistic spectrum disorders. The difficulty in acquiring social skills stems from a difficulty in processing social and emotional information, which is not readily solved through teaching social skills alone. The normal intuitive ‘fast track’ processing of social information is disturbed, so the child has to use slower more general cognitive processes. This has two important consequences: it is difficult to process social information while performing other cognitive tasks (making learning in normal social educational situations problematic) and processing social information without a natural intuitive route is so complex that only the most able are able to do so, and not without considerable stress. There is, nevertheless, great variation in the social difficulties and sociability of children with autistic spectrum disorders. These differences can be characterised as certain ‘types’: the ‘aloof’child is classically withdrawn, shunning social contact and appearing to live A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 3 Definition, Identification and Diagnosis ‘in a world of his/ her own’; the ‘passive’ child is happy to accept social attention from others (as long as it is not too sudden or invasive) but does not initiate it; the ‘active but odd’ child wants social contact, and tries to initiate it, but gets it wrong and cannot work out the social rules and their variations according to context. Wing (1996) added the category of the ‘mildly affected’ individual, where these difficulties are even more subtle and difficult to detect in the young child. These are not rigid categories and the child may move through them in the course of development or through education/ training. Understanding and using communication: Only in autistic spectrum disorders does language develop separately from communication. Language difficulties or delay frequently accompany autism, yet some children with autistic spectrum disorders may have language as a special area of skill. All, however, will have difficulties in communicating, regardless of any mechanical language skill. The child without a spoken language will not be able to compensate (as others do) by the acquisition of a sign language, although augmentative systems may be an aid to developing language. The problem is making sense of communication in all its forms - speech, intonation, mood, gesture, body posture, personal interactive space, sign, writing and visual symbols, although the latter are easier to acquire because they are visual and uniform. The child who fails to acquire any spoken language, and struggles with signs, is at least recognised as having a problem, even though its real nature may not be understood. The child with good speech, however, is often misunderstood, with his/ her difficulties being attributed to behaviour problems. 4 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Definition, Identification and Diagnosis Flexibility of thinking and behaviour: Some formulations of the ‘triad’ include a lack of imagination, but that is not really accurate. The real difference from their intellectual peers is in social imagination. Thus, if they have sufficient intellectual ability, they may engage in pretend play but still have problems doing so with others and in sharing pretence. More able children may engage in complex imaginative games or creative activities, but as a solitary pursuit which tends to be more repetitive. The difficulties with imagination involve distinguishing the real from the imagined or dreamt. Children with autistic spectrum disorders do not generally understand or enjoy children’s fiction but they do like repetitive tales and particular stories where the social element is reduced in favour of mechanical ‘heroes’ and exciting physical events, the classical favourite being Thomas the Tank Engine stories - especially on video. More characteristic are difficulties in flexible thinking and behaviour, no matter how high the general intelligence. The child finds it difficult to initiate actions without prompting or cueing, to inhibit behaviour, to switch attention, and to monitor or reflect on his/ her own learning, experiences, knowledge or feelings. Levels of Explanation Autistic spectrum disorders can be considered at three different levels of explanation: behavioural, biological and psychological. The behavioural level is the level currently needed for diagnosis, although eventually it may be possible to provide a biological ‘test’ for the condition. When it comes to treatment and the provision of services, biological causation may not be significant and behaviour alone may be misleading, depending, as it does, on many other A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 5 Definition, Identification and Diagnosis factors. It is the level of psychological functioning - the way the individual perceives,