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

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‘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.

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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

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factors. It is the level of psychological functioning - the way the individual perceives, thinks, learns and feels that offers a better guide as to what is needed.

Individual Differences

Individuals with autistic spectrum disorders are very different from one another, reflecting differences in the severity of the autism, any additional disorder, the level of intelligence, the level of language ability and the personal qualities and experiences of each individual. They will share the triadic difficulties, but the way these are expressed will differ. Each person needs to be understood as an individual. There is nothing that children with autistic spectrum disorders do that the rest of us do not, at least under similar conditions of stress, but it is likely that what they do may be inappropriate in the social situation or differ in severity and extent.

Associated Conditions

There will often be additional developmental difficulties, such as language disorders, although there will seldom be a dual diagnosis. If a child with an autistic spectrum disorder develops no speech, for example, in spite of good non-verbal intellectual development, one would suspect an additional language impairment, but many associated language disorders are more subtle.

Motor problems too may co-occur (not just the ‘clumsiness’ associated with AS) including dyspraxia, which is disturbance in the planning and implementation of voluntary movements, while leaving automatic or cued actions undisturbed. Some children are extremely agile, with an ability to run along ledges without faltering and to climb up anything, no matter how precarious, while others

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are extremely disturbed by any activity involving balance and may not even manage to walk on uneven surfaces such as grass or sand.

Children with autistic spectrum disorders may have other developmental disorders such as sensory loss or Down’s syndrome, although there may then be a considerable delay in picking up the ‘autistic’ difficulties. Other conditions may be associated with the spectrum as a possible cause; these include tuberous sclerosis and Fragile-X syndrome. Tourette’s syndrome can cause problems with differential diagnosis but the two conditions often co-exist. Epilepsy, especially late-onset epilepsy, is strongly associated with autism, especially, but not exclusively, when there are additional learning difficulties. Additional learning difficulties (mild, moderate, severe or profound) occur alongside autism itself in around three quarters of cases and, like all the other developmental difficulties, interact with the autism in their effects on development and learning.

Mental health problems: Autistic spectrum disorders can become associated with mental health problems. In late adolescence there may be depression, allied to lack of self-esteem and anxiety about the future. This is particularly so where problems are misidentified and appropriate help is not available. Bi-polar disorders may also occur, with problems sometimes in distinguishing the manic and depressed stages from the symptoms of the autistic spectrum disorder. Some adolescents receive a diagnosis of schizophrenia, due to some superficial similarity of symptoms, or misunderstandings during the diagnostic interview. It is possible to develop schizophrenia when one has an autistic spectrum disorder, but misunderstandings about the interpretation of ‘symptoms’ are more likely.

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Identification and Diagnosis

First signs: Parents are usually the first to recognise that something is wrong, although that depends on the severity of the autistic spectrum disorder, whether there are accompanying difficulties, and the experience of the parents. Typically, it is an accompanying problem that may first cause concern such as failure to develop speech, delay in developmental milestones, or hyperactivity. Parents may often sense that there is something else - that their child is simply not responding to them as they should and (crucially) not initiating contact. At one extreme is the passive child who is ‘too good’ as a baby - content to be alone unless hungry, or uncomfortable. At the other, is the hyperactive baby who never seems to sleep, is constantly irritable and fails to be comforted or soothed. Sometimes, there is a combination, with the baby never seeking attention but reacting negatively to human contact even when having basic needs met, such as feeding.

The more able the child, and the fewer the accompanying difficulties, the harder the autistic spectrum disorder becomes to detect. Children with AS, for example, are less likely to be picked up before school since they may react relatively well to parents and known adults but have increasing difficulties in relating to peers, especially in groups. Even at school or nursery, when difficulties become apparent, they are often put down to other factors. Parents find it hard to manage their young children with an autistic spectrum disorder, but problems in the parent-child relationship are more likely to be the result of the child’s difficulties than the cause of them.

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Obtaining a diagnosis: Evidence shows that there is considerable geographical variation in the age at which diagnosis is obtained and there are still many late diagnoses (Howlin & Moore, 1997). Early diagnosis is the gateway to understanding the child and beginning to provide the education and support needed. There are two diagnostic systems on which a diagnosis may be based:

ICD-10: World Health Organisation, 1992

DSM-IV: American Psychiatric Association, 1994.

There are now screening tools (e.g. CHAT: Checklist for Autism in Toddlers: Baron-Cohen et al., 1996) that can be used as a first screen by GPs or health visitors as part of a developmental check at 18 months. Ultimately, the diagnosis is a medical one, based on clinical judgement, but there are different clinical tools such as questionnaires and observation schedules, that have been standardised to provide a more reliable way of making a diagnosis. Some are focused more on classical autism (ADI-R) while a more recent one covers the full range of autistic spectrum disorders (DISCO). ADI-R and DISCO are based on parental interview while there are play-based diagnoses (ADOS or Newson’s system).

These methods are time-consuming and not always practical in first-line services. Tertiary services that specialise in developmental disorders may offer multi-professional diagnosis which includes an assessment from psychologists, teachers and therapists, that indicate the child’s cognitive ability, language and communicative stage, responsiveness to therapy, and academic skill level. In reality, a three-stage process to diagnosis is probably needed: screening, local and tertiary services.

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Co-ordinating diagnosis and provision: A medical diagnosis is only the start in determining a child’s needs and deciding how they should be met. It is very important that local education, health and social services are closely involved in the diagnostic process so that the family can be supported immediately, educational and therapeutic input can also be planned, and service needs assessed. Local assessment should be the norm, with national tertiary centres being used in only the most complex cases. There is little point in an early diagnosis if it does not lead to educational and therapeutic support for the child (as needed) and social support for the family. If there is good local provision and parents are supported well, there is more likely to be a common view of what is needed. The Royal College of Paediatrics and Child Health (1995) has issued guidelines on how specialist input to tertiary services should be supported, to ensure national coverage of expert diagnoses.

Prevalence

Prevalence figures for classical autism tend to give consistent figures of four or five per 10,000, with the figure of about 20 per 10,000 for the group with autism and additional difficulties. Autistic spectrum disorders cover a wider group, including those with high functioning autism and AS, although there is not yet good epidemiological data for this wider group. The one study of AS was conducted in Sweden and suggested a much higher prevalence for this group (Ehlers & Gillberg, 1993). It is difficult to know whether the current apparent increase in numbers is real or due to the increase in awareness, and the growth in numbers of professionals competent to diagnose. A 10 year Californian study suggested a 273% increase in numbers (California Health and Human Services Agency, 1999) and a recent publication (Kaye et al., 2001) using data

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from the UK, showed a sevenfold increase between 1988 and 1999 in newly diagnosed two to five year old boys. Scott (2000) reported a prevalence rate of one in 175 in school children in Cambridgeshire, with one in eight children with a special educational need having a diagnosis of an autistic spectrum disorder. There have been even higher rates suggested by informal surveys (National Autistic Society, 2000). Surveys of parents and educational authorities, however, (Howlin & Moore, 1997; Jordan & Jones, 1996) show that the numbers identified often do not reach even the lowest rate of five per 10,000, indicating that many children with autistic spectrum disorders remain unidentified or misdiagnosed, even now. Thus there is a large unmet need which must be identified and then planned for, in future services.

Aetiology

Ideas that parents could ‘cause’ autistic spectrum disorders have largely disappeared in the UK. There is a consensus that they are organic disorders with a genetic component (Rutter, 1999) but as yet, there is no definitive identification of any single biological cause. There may be genetic susceptibility, but needing an environmental ‘trigger’. There is an overall gender bias of four plus males to each female. Different views on the aetiology are given in Appendix 1.

Prognosis

Just as knowledge of autistic spectrum disorders and subsequent ability to diagnose has increased over the years, so there has been development in educational and treatment approaches. Some individuals live independently, hold down a job and may even have a partner and children. However, this ‘rosy’ picture is also somewhat misleading, even for the more able group, who remain vulnerable

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and may need access to support for most (if not all) of their lives. The companion guide, on services for adults with autistic spectrum disorders, gives the range of outcomes to be expected.

There is little definitive research on the factors leading to different outcomes but some predictors of good outcome are:

Functional language before five years old

Good intellectual ability

Milder forms of autism

Early appropriate intervention

Supportive parenting

Supportive education.

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Section 2: Services

Introduction

Sound inter-agency working will be the key to success in provision for the needs of children and young people with autistic spectrum disorders and their families. Health is likely to be the lead agency in pre-school years, working alongside education and social services. Education will play the leading role in the years of compulsory schooling. The involvement of social services will increase during the transition to adult services.

Health - An Overview

Health services should provide services to:

Assess and diagnose children with an autistic spectrum disorder.

Support families in the management of their child.

Encourage the development of skills in pre-school children, particularly in the areas of communication, through speech and language therapists.

Support individuals and families in promoting positive aspects of health, including mental health.

The new Children’s Fund (1999), the National Carer’s Strategy (DoH, 1999), the opportunities for pooled budgets under the Health Act (DoH, 1999), The White Paper, Valuing People (DoH, 2001), and the Scottish Review, The Same as You? (Scottish Executive 2000) should enable many of these services to be planned on a co-ordinated basis to provide a service to children and their families into adulthood.

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The role of health services in diagnosis and assessment: The first concerns that a child may have an autistic spectrum disorder will most likely be picked up by the primary health care team, the general practitioner or the health visitor. Primary care staff who are the initial contact points for families need continuing professional development to make them aware of autistic spectrum disorders and how to administer and interpret screening procedures. They also need to be aware of who provides a specialist diagnostic service locally. The prime responsibility for setting up such a service - which should be multi-disciplinary - lies with the health authority. This service should be capable of making most diagnoses but there should be cross-district or regional co-operation between health authorities to provide tertiary centres of particular expertise for more complex differential diagnoses. Once a diagnosis has been made there will be a need for a comprehensive assessment and for setting up a programme of intervention and support.

Behavioural Strategies and Supports: Health authorities will also have a key role in developing services to provide support in behavioural management to families and the children and young people themselves, to schools, residential and respite services. The personnel for such services will be clinical psychologists and community nurses, both of whom will need additional training about children with autistic spectrum disorders in order to develop and support holistic developmental approaches to the prevention and management of severely challenging behaviour. Thus, while needing knowledge of applied behaviour analysis, they will also need to know about functional analysis, ways of developing communicative ability and strategies for reducing stress and providing a supportive environment for such children.

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Managing ‘challenging’ behaviour is often a priority for parents and staff, failure to do so accounts for most school exclusions and the breakdown of family life. The goal of service, or those supporting families, should be to understand the reasons for the behaviour of the child and to use this understanding to train and support alternative behaviours that offer the same function. It is important to recognise that behaviour cannot be treated separately from the autism. Care staff will need specific training also, and practical courses could be arranged through clinical psychologists.

It is particularly hard for children with autistic spectrum disorders to change their behaviour when they do not understand why. Executive function difficulties mean that it is almost impossible for them to inhibit their responses, and communication difficulties mean they cannot communicate their confusion or distress, seek help from others, or even understand exactly what it is they must do or not do. Straightforward behavioural approaches may not be entirely satisfactory, unless they take these specific ‘autistic’ difficulties into account.

The child will benefit from a clear structure that indicates what they should do. Even children who have speech may benefit from a visual (written words or pictures) timetable that gives them security in knowing what comes next and may prevent them developing repetitive questions through anxiety. They will also find it easier to ‘obey’ a written or pictorial instruction than to follow a spoken command.

There is no way of dealing with troublesome behaviour that suits all situations or all children. There is need for careful observation, informed by understanding of autism and the likely difficulties the child may be experiencing. Children with autistic spectrum disorders

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may sometimes be violent or destructive but the most common reason is panic and the best approach is to try to avoid situations of panic (exposure to phobic triggers, an over-stimulating environment, uncertainty or something unexpected happening), wherever possible. Since this is not always possible, the child needs to be taught strategies for coping with his/ her panic without violent or difficult behaviour.

A fundamental operating principle of behavioural support teams should be proactive training, so the team is not just used as crisis intervention (when situations in schools and families may be difficult to repair) but to advise on the supportive environment and the development of skills that may prevent or reduce challenging behaviour. There should be good communicative links with speech and language therapists and any other therapists involved in the care of the child as well as with educational personnel such as teachers and educational psychologists. The procedures outlined in the report Don’t Forget Us (Mental Health Foundation, 1997) are a useful guide to how such services could be developed, with the added need for attention to the particular difficulties in autism.

Health promotion: Children with autistic spectrum disorders will have the same needs as other children for good primary health care. Careful preparation may be necessary to ensure that a visit to the doctor or dentist is not unnecessarily stressful. Some children may have additional mental health needs, particularly in teenage years. There is a danger of children with autistic spectrum disorders falling between Child and Adolescent Mental Health Services (CAMHS) and Learning Disabilities Services and receiving an inadequate service. Ideally, health, social services, education and the voluntary sector will work together at a Local Authority level to develop a strategy to

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understand, address and meet the needs of these children and their families, as part of the mandatory requirement to plan children's services on an inter-agency basis. CAMHS, in particular, have a key role in preventative mental health and in the positive promotion of well being, if they function in a proactive way.

Health authorities may also be asked to fund particular interventions, such as Auditory Integration Therapy (AIT: Mudford, 2000) or special diets (Whiteley et al., 1999). There is no scientific evidence for either of these interventions (or others) but there is case study evidence of improvement in individual cases and decisions for support should be based on the overall health benefits to the child and family. Sometimes a parent can be persuaded to try a less disturbing (and expensive) option such as daily playing of music through ear phones at home rather than AIT, since the evidence suggests this may be just as effective.

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Early Interventions

Purpose Provider Nature

Diagnosis Health authority Screening Local assessment Tertiary regional centres

Information & Local specialist Access to support groups support Voluntary agency Benefits Social services Appropriate literature

Home Health authorities Behaviour – psychologists Management Education authorities Parent training – home visits by teachers and nursery nurses

Education Education authorities Specialised nursery education Health authorities Speech and language therapy Social services Joint funding

Respite Social services Respite care with specialist input

Pre-school: One parent-led development is the growth of intensive programmes with the child, such as Option or Lovaas (see Appendix 2). There are also autism-focused programmes that facilitate parental interactions such as Hanen, EarlyBird and PECS, there are more general programmes such as Portage (Bluma et al., 1976) and home visiting teachers. There is often clinic or home-based

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intervention from therapists, most frequently speech and language therapists. Some child development centres, or specialist centres, run programmes to support the child and the family. Other areas have specialist nurseries (usually part-time) or nursery classes attached to specialist schools. In some areas social services make provision in nursery classes or day care. The Schools Standards and Framework Act (DfEE, 1998) and the guidance for 2000-1 give regulations for early years development and childcare partnerships and plans.

Generally, the level of specialist provision is inadequate, largely because of the recent rise in numbers presenting autistic spectrum disorders in this early age group. In some areas, children are given places in mainstream nurseries (with or without support) or placed in generic special school nursery classes; this can be appropriate if it fits the child’s level of ability, and there is expertise available in that setting. Some pre-school services are also run by health authorities (usually attached to child development centres) and by social services.

Education

Access and remediation: Education Acts give entitlement to all children (DES, 1970; DfE, 1988; 1996) SEN Code of Practice (DfE, 1994; DfES, in press) and the SEN and Disability in Education Act (DfEE, 2001) set out the framework for ensuring access and involving parents. However, education also has a role in remediating the effects of autism and most specific interventions have this goal of ‘therapy’ for the autistic condition itself.

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Current educational provision in the UK: Educational services in the UK are eclectic, reflecting custom and the view that no single approach has been demonstrated superior (Jordan et al, 1998). The interventions that claim to work for all, on the other hand, tend to be single approaches. Education, health and social services will all need to be aware of the claims being made by such approaches, any supporting evidence, and how that evidence relates to particular cases. When sponsoring particular interventions, education authorities have a duty to monitor progress and to protect against abusive treatments; opportunities to engage in more formal evaluations, through ‘waiting list’ methodologies should be considered, to build up evidence of relative efficacy (Jordan, 1999).

There is a wide range of provision to meet the differing needs, although there is still inadequate provision in terms of quantity and quality. Appendix 2 gives the history of specialist education for children with autistic spectrum disorders in the UK. The current situation reflects the tension between increasing recognition of the need for specialist teaching and the movement (enshrined in the Salamanca declaration) towards full inclusion (UNESCO, 1994).

Primary - Children with autistic spectrum disorders attend all kinds of schools: specialist, specialist units in special or mainstream schools, special or mainstream schools, with varying degrees of support, and ‘resource bases’ where there are staff with training and experience who can provide support to the children and to other staff. In other areas, the LEA or EA has the resource of expertise and has a mechanism (outreach or advisory teachers, training courses) to support children and staff. Staff, other than teachers, may also be

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specialists (e.g. specialist speech and language therapists or educational psychologists) and provide input to the schools.

There is good practice in developing peer support, using buddy systems, for example to manage free-time and the ‘Circles of Friends’ strategy (Letherten-Jones, 2000) to challenge attitudes and to find ways to deal with potential bullying. Many children in mainstream will be allocated a learning support assistant (LSA) for a number of hours a week, the usefulness of which depends on their training and support (Jordan & Powell, 1994).

Secondary - The range of placements at this stage mirror those at primary level, except that there are far fewer specialist units or resource bases available and the need for specialist and residential provision grows rapidly. This is partly due to the changing needs of the child, who may experience problems at puberty, but also the changing needs of families and the nature of secondary schools. Families come under particular stress because their child becomes more difficult to manage physically and emotionally, their family needs (e.g. sibling needs to study and have a social life) come into conflict with the needs of the child with the autistic spectrum disorder and the need to prepare for adulthood is a growing anxiety. Secondary schools are usually larger than primaries and more difficult for the child with an autistic spectrum disorder and less flexible in themselves. Their pupils are more self-conscious and may need more skilled help to engage in buddy or Circle of Friends schemes. They are also more pressured by government systems of accountability and may be less willing to accommodate young people with severe difficulties.

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Inclusion versus specialist provision: Decisions on educational placement for a child should not be about location per se (i.e. mainstream, special or specialist) but about the kind of educational need that exists and how that need can be met in the least segregated way (see Excellence for all Children, DfEE, 1997). There is no intrinsic merit in ‘inclusion’ if that is just locational and the child is not able to participate in, and gain from, that situation. Equally, setting-up a specialist resource for autism does not automatically mean that it is the best place to meet the needs of all children with autistic spectrum disorders. Research shows that most children benefit from integrated settings, but only if there is specialist help in enabling them to do so.

The idea that a child should start in mainstream (because they are more easily accommodated when younger) and only get specialist help when other placements fail is a potentially damaging approach for many children. It may be better to start with specialist settings (or specialist support in other settings) so that a child can learn how to learn and can develop the skills needed to cope in less structured settings. Reverse integration brings normally developing children into that setting and is a useful bridge to later full inclusion. Inclusion is as much about altering mainstream settings to be more ‘autism-friendly’ as it is about getting the child with an autistic spectrum disorder to adapt. It is also important that systems of transfer and support between specialist and non-specialist placements are flexible and different levels of support at different times are provided as appropriate. If specialist schools are to function as support for mainstream colleagues, staff will need additional training for that role and the process would benefit from periods of staff exchange between specialist and mainstream settings.

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Integration and inclusion:

Degree of integration Purpose Criteria

Full segregation Specialist setting Need for detailed Basic skill acquisition structure and specialist staff

Reverse integration Tolerance of others Skills of imitation Developing play skills Still need for structure

Partial integration Learn to learn in Able to learn in group group Need for extended Enriched subject curriculum teaching

Full integration/ Develop ‘normal’ Able to learn inclusion skills incidentally Full academic Academic ability curriculum

Even when the child is judged to meet the criteria for full integration or inclusion, this will not mean that s/he is able to cope without additional support and without some understanding of likely causes of stress and strategies for helping. After considerable improvement in basic and social skills, children with autism remain vulnerable in what is likely to still be a confusing and difficult world.

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Specific approaches within eclectic situations: Although some approaches would claim that they must be adopted as the sole methodology, there is no evidence for this and in practice it is very rare for any approach to be given in absolute isolation. Some approaches lend themselves to any setting, although it is important that staff understand the principles of the approach they are adopting and do not just copy aspects blindly. Using individual assessment to create and monitor functional Individual Educational Plans (IEPs) is part of legislation under the Code of Practice (DFE, 1994) and is also an important part of both TEACCH and ABA approaches. The revised Code of Practice (DfES in press) keeps the leagal requirement of an IEP but simplifies it. The visually mediated instruction of TEACCH is relatively easy to incorporate into mainstream and other settings and work is ongoing into how TEACCH can be fully incorporated into the National Curriculum.

Where a child has access to trained one-to-one support for at least part of the time, it is possible to see how this could be used for the delivery of more intensive one-to-one programmes as in ABA or interaction techniques, but a full day of this kind of teaching would not be compatible with a broad educational approach. Then it would be a case of making a judgement on the relative benefits of the broad curricular approach versus the specific intervention. In many cases, adapting the environment to make it less confusing, making instructions clearer and giving more time for a response, will benefit all children. Other approaches may also have something to offer a more eclectic approach, but would be difficult to incorporate in their entirety.

The Quality and Curriculum Authority is currently investigating support guidelines for children with autistic spectrum disorders taking public examinations, including standardised curriculum tests.

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Evidence-based Characteristics of Successful Interventions

Early specialist intervention, but there can be significant improvement and development at any age.

Parent/carer involvement - developing an understanding and supportive relationship with parents is important.

A focus on communication, regardless of the language ability of the child.

Systematic and structured teaching of key developmental skills, such as imitation and joint attention.

Enabling social interaction and play skills, but remembering to teach social understanding, not just make children conform.

A functional approach to managing behaviour, that recognises the reasons behind the behaviour and is as concerned with building skills as producing conformity.

Recognition that a supportive environment (such as in a structured home or school setting) is a poor guide to how the child will function in less structured or supportive environments.

Support in transitions (from home to school, one class to another) and in less structured ‘free-play’ sessions rather than (as in other cases of special need) in formal lessons.

Access to the academic curriculum in ways that do not depend on social or communicative skills.

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Social Services Support

Social services (The Children Act, 1989) should be able to assess the need for, and either provide, or inform the family where they might obtain, the following services.

Befriending schemes, where children are supported at home or during leisure activities.

Sitting services to enable other family members to spend time outside the home.

Respite facilities for support during evenings and/or overnight

Financial benefits and allowances potentially available for the family.

Assessment for disability registration before leaving school.

Out of school support: There will be a continuing need for services that develop leisure and independence skills in the children and provide respite to the family. In some areas, voluntary services take the lead in making provision for out-of-school clubs and playschemes which operate at weekends and during school holidays. Some education services may make this provision and voluntary societies may make provision for befrienders or a sitting service although funding for this may be sought from health or social services or from joint funding. The Childrens Fund (DfEE, 1999) will make all these initiatives easier to implement and requires local authorities to make detailed inter-agency plans. Some professional groups (speech and language therapists, psychologists, occupational therapists) may also set up such provision. Respite care and family support becomes more important as the child gets

26 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Services

older but is very rarely adequate in terms of quantity or quality, or the ability to understand (and thus manage) children with autistic spectrum disorders.

Family support: Need will vary according to the age of the child, the nature and severity of their autism, the way(s) in which their autism is manifested, and the natural support systems available to them and their family. Health and social service departments will need to overcome difficulties from strict or rigid demarcations of services on the basis of intellectual ability. The Children’s Fund and the Connexions initiatives (DfEE, 2001) should help prevent this happening in the future. A functional approach is required, based on a comparison with the degree of social and practical skills, autonomy and independence experienced by the majority of normally developing children of the same age. An intellectually able child may still be unable to perform or achieve many of the day-to-day tasks that other, normally developing peers and their families take for granted. The same child may also make significant demands on the family through their obsessive behaviour and need significantly more reassurance and support. Assessment should include the needs of the whole family. Respite services designed for other disabled children may be appropriate for some children with autistic spectrum disorders and their families, but others may need a very individual approach. Flexibility and staff training are the keys to responsive and effective services.

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 27 ervices

There are innovative play schemes for pre-schoolers and adolescents that use peer-facilitation models to provide a free-time service that is of immense benefit to the child and their family.

Transition to adult services: There needs to be careful planning with young people with autistic spectrum disorders in preparation for leaving full-time education. The new Connexions service is being rolled out from April 2001 and the process will be complete by September 2002. Its personal advisers, along with the school and other agencies, are to be involved in transition planning with young people who have statements of educational need and their families, from around 14 years old.

Those who are likely to go into higher education will require considerable support to access, participate and achieve in the less structured setting of a college or University environment. For other young people who are going to continue in further education or seek employment, when they are in their 19th year the Connexions partnerships will liaise with the local Learning and Skills Council and Employment Service to arrange for an appropriate transition. If necessary the Connexions service can remain involved untill their 25th birthday.

In many cases, particularly where young people with autistic spectrum disorder have a severe learning disability, social services will also be involved. They may support the young person to access other daytime activities, short-term care or residential provision. (See the companion: Guide to Services for Adults with Autistic Spectrum Disorders).

28 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Quality in Services for Children with Autistic Spectrum Disorders

Section 3: Quality in Services for Children with Autistic Spectrum Disorders

What counts as good practice in autistic spectrum disorders? Services for children with autistic spectrum disorders need to meet the quality standards that generally apply. Thus, schools should demonstrate general good practice in learning and teaching, as measured by OFSTED (DfE, 1988; HMI in Scotland and Northern Ireland). The management action plans for the provision of co-ordinated services for disadvantaged children, that are required under the government’s Quality Protects initiative (DoH, 1998), also help provide a base of good practice upon which autism specificity can develop. General good practice is necessary, but not sufficient, for autistic spectrum disorders.

There is not sufficient evidence on the relative merits of different interventions to recommend a particular curriculum, approach or methodology. In fact, it is likely, given the diverse needs of the population, there will be no single approach that is ‘best’ for all children with autistic spectrum disorders.

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 29 Quality in Services for Children with Autistic Spectrum Disorders

Key Features for Quality Services

Structure - Learning is improved and stress and anxiety reduced when the physical environment and the communication system make it clear to the child what they have to do, where, with whom, when, for how long, what next, and how.

Mediation - Children with autistic spectrum disorders usually learn best and understand more when they do not have to cope with social and verbal mediation of their learning (e.g. through spoken instructions in group settings) and can have visual instructions, especially through asocial means (e.g. through computer assisted learning) or 1:1 teaching.

Priorities - Whatever their linguistic ability, children with autistic spectrum disorders will need to be taught how to communicate as a matter of priority and to understand the communicative and interactive behaviour of others.

Control - There is a need for control and this must be recognised by non-confrontational explicit rules, training in effective advocacy to make needs known and the need to develop effective and acceptable ways of exerting control.

Flexibility - Difficulties with flexibility will not be helped by inflexibility in the rules of the organisation, which should recognise that fairness does not mean treating every one in the same way, but in providing equal opportunities, adapted to individual needs.

30 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Quality in Services for Children with Autistic Spectrum Disorders

Differentiation - Children with autistic spectrum disorders not only differ from other children (even other children with special needs) but also from one another and services should have the resources to recognise and provide for individual needs.

Knowledge - It is vital that whoever is working with the child has some understanding of the condition and the implications for practice. As well as knowledge, staff should have a flexible and empathetic attitude and be skilled in the range of techniques that are likely to be needed.

Measuring the quality of services: Since there is no one ‘approved’ way of working with such children, measures of quality have to look for the operation of principles and the judgement of experienced peers. Thus, it may not be possible to define what we mean by ‘quality’, but one can recognise that quality, given appropriate experience and knowledge.

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 31 Quality in Services for Children with Autistic Spectrum Disorders

Case Study: Autism Services Accreditation Programme: Under this programme established by the National Autistic Society (but operated independently) experienced professionals form teams that carry out reviews of the service against a series of standards. This report goes to the Accreditation Committee (children’s services) which comprises independent experienced senior professionals, who decide whether the service has reached those standards and can be accredited or whether accreditation should be deferred. The purpose is continual improvement, so that even accredited services are given areas of work that constitute commended good practice, and areas that could be further developed. Where a service is deferred, it is given detailed guidance on the areas where further development is needed and a time scale, before another review can take place. The system has been developed for single specialist services (such as specialist schools) but it is being adapted for a review of the total provision within a Local Education Authority/Education Authority.

Staff training: The knowledge, understanding and skills of the staff are key factors in determining the quality of services, staff training is an important way of ensuring quality. There needs to be different levels of training:

awareness-raising so that the climate for children with autistic spectrum disorders becomes more supportive, this can be provided by voluntary agencies and professional associations;

accredited training, providing opportunities to keep abreast of current research and practice.

32 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Quality in Services for Children with Autistic Spectrum Disorders

There have been continuing professional development courses in autistic spectrum disorders available (in a few Institutes of Higher Education and by Distance Education) since 1992 and some training for LSAs. From January 2002, there will be a web-based training course available for those (e.g. parents, LSAs, residential care staff) who have experience but no formal qualifications, available at the University of Birmingham Attendance at courses in particular methodologies (such as TEACCH) can be valuable additions, but they are no substitute for broader training.

Involving Parents and Children in Services

Legislation supports good practice in ensuring that parents are involved at all stages of special educational provision and pre-school services. The older the child and the more distant the service from the home, the harder this is to foster. All boarding runs the risk of de-skilling parents, unless there is a positive programme to include parents in the management techniques used by the school and to support parents with flexible arrangements for their contact with their child. On the positive side, residential care or respite provision can enable parents to maintain their equilibrium and balance the needs of all the family, so that contact with their child becomes a more positive experience for all concerned. Parents too may be highly skilled and knowledgeable (at least about their own child) and they may have much to contribute as well as to learn.

Involving the children themselves in their own programmes is more problematic, given their difficulties in monitoring their own behaviour, thinking and emotions and in communication. However, there have been successful examples of this involvement (e.g. Barber, 1996) and most services will be involved in training for self-advocacy. This starts with allowing some child-directed sessions and negotiated choice of daily programmes. It also means that the service needs a key-worker system so that individual and idiosyncratic responses can be recognised and taken into account in planning and implementing the service.

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 33 onclusions

Conclusions

Autistic spectrum disorders involve developmental differences in social understanding and interaction, in all forms of communication (regardless of level of speech) and in flexibility in thinking and behaviour.

Early diagnosis followed by effective early intervention for the child and family can make a profound difference to outcome.

There are significant individual differences between children with autistic spectrum disorders based on the severity of the autism, degree of intelligence, language level, associated problems, personality and life experiences.

All children with autistic spectrum disorders benefit from teaching that takes account of the disorder, regardless of the location of that education (eg mainstream/specialist school).

Challenging behaviour arises through the child’s difficulties in coping in particular situations and should be dealt with by environmental support and the training of acceptable alternatives serving the same function.

Inclusion is best seen as the end product of a process of preparing the child with the autistic spectrum disorder to participate and preparing the setting to accommodate.

There is no scientific evidence of the superiority of any single approach to autistic spectrum disorders, but there is cumulative evidence of the principles on which good practice is based.

Good practice in services will include planned involvement of parents and children in the planning and monitoring of the programmes.

34 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Conclusions

All services for children should have quality control procedures which take account of the autistic spectrum disorders.

Children with autistic spectrum disorders (and their families) will need educational and social help outside of school time.

Children with autistic spectrum disorders may have other health problems and are particularly at risk of some mental health problems in adolescence.

There may be symptomatic relief through medication but there is no proven medication for autism itself; education is the treatment with the best track record of success.

Key questions to ask of service providers:

1. Which approaches and interventions are employed and are they guided by knowledge of autistic spectrum disorders?

2. How is the effectiveness of individual programmes monitored and how do the results inform practice?

3. What training is given to staff in autistic spectrum disorders?

4. Are there measurements of internal quality?

5. Is the service registered with an external quality audit programme?

6. How are transitions for children planned and implemented?

7. What involvement do parents/carers have in the development of individual programmes?

8. How far does the challenging behaviour of children challenge the service to adapt and change?

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 35 Appendix 1: The Aetiology of Autistic Spectrum Disorders

Appendix 1: The Aetiology of Autistic Spectrum Disorders

Autistic spectrum disorders as biochemical disorders: There is growing evidence that the brain chemistry of people with autistic spectrum disorders differs from the norm, but less evidence that it differs from that found in other developmental disorders (Shattock & Savery, 1997). Even if this difference is confirmed, that does not prove a causal connection; biochemical differences may reflect a core disturbance in brain functioning or may be the result of differences in behaviour and functioning from another cause. Biochemical theories of causation are not opposed to genetic ones, since there might be a genetic cause for a faulty or missing enzyme, for example, that would lead to inadequate/disordered processing of certain foods and hence to unwanted chemical by-products that could interfere with brain functioning.

Diet is implicated because of the nature of the disturbed biochemistry found and because any environmental effect would have to be from a universally available source to which certain children would have a genetic susceptibility. Some parents and professionals claim success in reducing additional (but not core) difficulties in autistic spectrum disorders from gluten and casein free diets (Whiteley et al., 1999; Knivsberg et al., 1990; 1995) but there is no fully controlled study to date and there are considerable practical and ethical problems in advocating such a diet in children who may already have a restricted diet. This theory and one linking the disturbance to the sulphurinase system (Waring & Ngong, 1993), are worthy of scientific testing, but current evidence would neither support nor refute them.

MMR and ‘leaky gut’ in autistic spectrum disorders: No-one is suggesting that MMR is a general cause of autistic spectrum disorders. This is clearly not the case, since autistic spectrum

36 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Appendix 1: The Aetiology of Autistic Spectrum Disorders

disorders pre-dating the giving of MMR are present in children who have not had this vaccination, and the majority of children who have the MMR vaccination do not go on to develop an autistic spectrum disorder. It is also important to note that measles, mumps and rubella are dangerous diseases that themselves can lead to developmental disorders, including autistic spectrum disorders.

The argument against the triple vaccination (in a vulnerable group) stems from some studies of the gut wall of children with autistic spectrum disorders referred to a gastroenterologist for intestinal problems (again, not present in all children with autistic spectrum disorders) (Wakefield,et al., 1998). The gut wall was shown to have lesions in which the measles virus was found, and later identified as belonging to the kind found in vaccinations, rather than in the ‘wild’ form of the disease. The mechanism proposed whereby this might lead to autistic spectrum disorders relates to the biochemistry theories above. By attacking the gut wall (and possibly also the blood brain barrier) the body’s natural defences against the toxic effects of inefficient digestion would be breached, leaving the chemicals to affect brain functioning. This is where secretin came into the story, since one of its supposed effects was to restore the integrity of the gut wall and prevent this happening. Controlled trials of secretin have not supported the original claims made, but there remains much controversy about the value of secretin and the role of vaccination in autistic spectrum disorders. Kaye et al. (2001) show no time link between vaccination with MMR and the onset of autism, in a study using a large GP database from the UK. There is on-going research in this area.

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 37 Appendix 1: The Aetiology of Autistic Spectrum Disorders

Differences in degree or kind? While the question of core aetiology remains unresolved, there is a growing debate about the nature of autistic spectrum disorders and whether they should be considered as ‘disorders’ or pathologies at all. Many people with an autistic spectrum disorder themselves, do not accept that they have a ‘disease’ in need of a cure, but claim to reflect normal (and potentially valuable) human variation. There is no point in searching for a ‘cause’ when the difference is one of degree rather than kind and when their characteristics have value, given an appropriate context. Certainly, the attempts to find any structural differences in the brains of people with autistic spectrum disorders have led to conflicting results and a failure to replicate findings, for the most part. The most promising results suggest there may be differences in the development of the hippocampus and the mid-brain, including the amygdala. These structures are involved in the ‘social brain’ and in emotion and memory processing. These results need verification and, as with the biochemistry findings, examining in relation to the direction of causation.

38 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Appendix 2: Specialist Provision in the UK for Autistic Spectrum Disorders

Appendix 2: Specialist Provision in the UK for Autistic Spectrum Disorders

Background to service provision in the UK: One of the first schools for children with autism in the world was started in London by a group of parents, led by Helen Allison, under the auspices of the National Autistic Society (NAS), which she had also started. Its first teacher was Sybil Elgar, who made the revolutionary discovery that if you insist, and persist, in a gentle but firm manner, children with autism will not only comply and begin to learn but will come to anticipate and then enjoy the regular routine of ‘work’. Parents and professionals from all over the world came to look and learn, including Eric Schopler, who went on to start TEACCH (the treatment and education of autistic and communicatively handicapped children: Mesibov, 1997) in North Carolina. Prior to that, children with autism were regarded as ineducable and were often institutionalised, ending up on locked back wards of hospitals, destructive and self-mutilating and subject only to behaviour modification in the way of education or care.

An alternative, unacceptable but just as bleak, scenario was the view, that autism was a psychosis brought about by cold parents (mostly mothers). The ‘cure’ then was either a futile period when nothing was done to help the child, but the family was given family therapy, or the children themselves were given psychotherapy, often separated from the parents who were the presumed ‘cause’ of their difficulties. Some research evidence and decades of experience showed that this was not effective treatment and behavioural approaches became the treatment of choice. Behavioural approaches offered the hopeful message that all children, no matter how severe their learning difficulties, could be taught useful functional skills. However, if ‘learning theory’ and ‘operant training’ were universals that would apply to all forms of learning, then

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 39 Appendix 2: Specialist Provision in the UK for Autistic Spectrum Disorders

diagnostic categories such an autistic spectrum disorder had no place. This meant the educational treatment for children with autism was not directed at the particular difficulties of such children and there was as yet no recognition that they might need specialist help and a specialist curriculum.

Even independent specialist schools were largely using the same approaches as with children with learning difficulties, but experience of teaching these children was developing and two initiatives helped to share and build on that expertise and then make it available to others. The first of these was the Inge Wakehurst Trust, dedicated to education in autism, which began to provide an ongoing programme of weekend and day conferences to raise awareness of autism (and later, AS) and develop practice. Another was the establishment of an association for professionals, now the Association for Heads and Teachers of Adults and Children with Autistic spectrum disorders (AHTACA). This organisation meets regularly to share experiences and support one another, as well as publishing small practical books as guides to practice. There was little available in terms of practical books at that time apart from expensive American texts.

This led to many skills-based curricula and the growth of specialist schools, mostly, but not entirely, in the independent sector. The onset of the National Curriculum (NC) in most of the UK caused a change from specialist developmental curricula to programmes of access to this national curriculum, (Jordan, 1992; Powell & Jordan, 1993).

40 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Appendix 2: Specialist Provision in the UK for Autistic Spectrum Disorders

There were also other developments that affected the curriculum for children with autistic spectrum disorders:

language acquisition research showed the importance of pragmatics and this was reflected in functional approaches to teaching language with signs and symbols seen as augmentative rather than alternative to speech;

cognitive research in autism elucidated some of the learning characteristics and led to more visual and cognitive approaches to teaching;

interactive approaches were being pioneered in the UK and the USA (Christie et al., 1992; Kaufman, 1994; Nind & Hewett, 1994) coupled with research and experience illustrating the limitations of purely behavioural approaches these were increasingly being used within specialist provision in the UK.

By the beginning of the 1990’s the diagnosis of autistic spectrum disorders was expanding rapidly, with categories like AS emerging, and the need for specialist training of teaching staff became apparent. The University of Birmingham set up the first accredited programme of continued professional development in autism.

International influences on UK provision: There have been interventions that were very influential in their time but now have largely died away. This section, however, deals with interventions that are still used or which have had a continuing influence on current approaches in the UK.

TEACCH - workshops from the TEACCH training team in North Carolina (or less often from a European base) have been held in the UK for the last 15 years and many local authorities

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 41 Appendix 2: Specialist Provision in the UK for Autistic Spectrum Disorders

‘train’ relevant staff by sending them on two three or five day workshops. More in-depth training involves spending from one to six months in North Carolina and a number of local authorities now have their own TEACCH trainers and have developed ways of incorporating TEACCH into the National Curriculum and even the mainstream context. TEACCH is an approach based on principles of structured teaching that aims to provide a child with a prosthetic environment in which to learn and function most effectively. It has its own assessment techniques that identify ‘emerging skills’ that help to make the approach both positive and successful. The NAS has adopted many of the TEACCH ideas and incorporated them into its own adapted SPELL (structure/ positive/ empathy/ learning/ links) approach.

Daily Life Therapy (DLT)/Higashi - Although originating in Japan, it is the American version of this approach that has had an impact in the UK. Originally (and to some extent, still), parents sought to send their children to the school in Boston where they were given a 24 hour curriculum based on physical redirection of behaviour to functional ends, daily aerobic and focused activity, self-help skills, drilling of responses and certain arts (especially music). Currently two schools have been set up in the UK following these principles, one more directly, the other in the context of a more eclectic approach. Other schools in the UK in the past decade have taken key elements from DLT and incorporated them into their own curricula and the idea of daily aerobic exercise, as a way of reducing stress and challenging behaviour, has research validity and has influenced most, if not all, specialist UK schools.

42 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Appendix 2: Specialist Provision in the UK for Autistic Spectrum Disorders

ABA behavioural approaches - Behavioural approaches have a long history in provision for children with autistic spectrum disorders but the re-emergence of them after the initial disillusion is based on the reported success of the Young Autism Project (Lovaas, 1987). This seemed to show that the previous failure of behavioural approaches to produce long- term generalisable effects could be overcome (at least in almost half of the children in the project) by a sufficiently intensive programme at an early enough age. There have been problems with the interpretation of the results of this project (Jordan et al., 1998) but they were sufficiently encouraging for replications to be attempted in many countries, including the UK. This in turn led to a growth of home-based Lovaas programmes at the pre-school stage and the establishment of at least one ABA-based ‘school’ for children with autistic spectrum disorders in London. The setting up of quasi-experimental designs to evaluate approaches has also been influential, along with the move towards ‘evidence based’ practice.

Interactive approaches - The UK has a history of its own interactive approaches but there are two interventions from North America that have also had considerable influence. One is the Option Approach (Kaufman, 1994) which has been more influential now there are start-up programmes in the UK. This ‘Son-rise’ programme is at least as intensive as the Lovaas programme but represents the opposite in terms of being child, rather than adult, directed. There is no scientific evaluation of the programme. The other interactive programme is a pre-school one, from Canada,: the Hanen

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 43 Appendix 2: Specialist Provision in the UK for Autistic Spectrum Disorders

approach. This was developed for speech and language therapists to use with parents of language disordered children but has now been adapted for parents of children with autistic spectrum disorders and for use by other professionals. In the UK, the format of enabling (rather than directing) parents and using video recorded sessions, as a way of encouraging reflection on their way of interacting with their children, has been used in two programmes for supporting parents of children with autistic spectrum disorders. One of these programmes was set up by the NAS as the EarlyBird programme (Shields, 2001) which also uses elements of PECS (see below) and TEACCH. The other is an adapted Hanen programme used in the NE of England, which is currently being evaluated.

Picture Exchange Communication System (PECS) - This intervention from America is better developed as a systematic approach to developing communication in children with autistic spectrum disorders, than UK-symbol programmes, coming with materials and a training programme, and some evaluation of its effectiveness (Bondy & Frost, 1994). PECS has become established in the UK through its adoption by a local education authority as part of its pre-school Portage (home- visiting) programme for parents of children with autistic spectrum disorders. It is now used in many settings and for all age groups (including adults). There are dangers of inappropriate use, but in some instances there has been a transformation of non-communicating environments into ones where communication has taken a central role and more children with autistic spectrum disorders are developing speech.

44 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers References and Further Reading

References and Further Reading

AHTACA (2000) The Special Curricular Department for Education and Needs of Children with Autistic Spectrum Employment (1999) The Children’s Fund. Disorders. Ascot: AHTACA. London: DfEE.

Attwood, A. (1997) Asperger's Syndrome: Department for Education and A guide for parents and professionals. Employment (1999) Excellence for all London: Jessica Kingsley. Children. London: The Stationery Office.

American Psychiatric Association (1994) Department for Education and Diagnostic Statistical Manual 4th edition. Employment (1998) The Schools New York: American Psychiatric Standards and Framework Act. Association. London: The Stationery Office.

Baron-Cohen, S., Cox, A., Baird, G., Department for Education and Swettenham, J., Nightingale, N., Drew, A., Employment (2000) Guidance for 2000-1. Morgan, K. & Charman, T. (1996) London: DfEE. Psychological markers for the detection of autism in infancy in a large population. Department for Education and British Journal of Psychiatry, 168:158-163. Employment (2001) Connexions Service Funding: a consultation paper. Bluma, S.M., Shearer, J., Frohman, A.H. London: DfEE. and Hilliard, J.M. (1976) Portage Guide to Early Education. Widsor Cooperative Department for Education and Educational Service. Employment (2001) SEN and Disability Rights in Education Act. London: Bondy, A. S. & Frost, L. A. (1994) The The Stationery Office. Delaware Autistic Programme. In Harris, S. L. & Handleman, J.S (Eds) Pre-school Department of Education and Science Education Programs for Children with (1970) The Education Act. London: HMSO. Autism, Austin: pro-Ed. Department of Health (1999) California Health and Human Services The National Carer’s Strategy. Agency, (1999) Changes in the population London: DoH. of persons with autism and pervasive developmental disorders in California’s Department of Health (1999) Health Act. developmental services system: 1987 London: The Stationery Office. through 1998: A report to the legislature Department of Health (1998) March 1, 1999. Sacramento, CA. Quality Protects. London: DoH. Christie, P., Newson, E., Newson, J. Department of Health (1989) & Prevezer, W. (1992) An interactive The Children Act. London: HMSO. approach to language and communication for non-speaking Department of Health (2001) Valuing children. In D. Lane & A. Miller (Eds) People: A new strategy for learning Child and Adolescent Therapy, Milton disability. 21st Centry. London: Keynes: Open University Press. The Stationery Office. Department for Education (1994) Ehlers, S. and Gillberg, C. (1993) The SEN Code of Practice. London: DfE. epidemiology of Asperger’s syndrome: a total population study. Journal of Child Department for Education (1996) Psychology and Psychiatry, 34: 1327-50. The Education Act: Children in need of provision. London: HMSO. Gerland, G. (1997) A Real Person. London: Souvenir Press. Department for Education (1988) The Education Act. London: HMSO. Howlin, P. (1998) Children with Autism and Asperger Syndrome: a guide for practitioners and carers. Chichester: Wileys.

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 45 eferences and Further Reading

Howlin, P. and Moore, A. (1997) Diagnosis Leicester City Council & Fosse Health Trust in autism: a survey of over 1200 parents (1998) Autism: how to help your young in the UK. Autism: the International child. London: National Autistic Society. Journal of Research & Practice, 1: 135-162. Leicester City Council & Leicester County Jones, G., Jordan, R. and Morgan, H. Council (1998) Asperger’s syndrome: (2001) All About Autistic Spectrum practical strategies for the classroom. Disorders. London: Mental Health London: National Autistic Society. Foundation. Letherten-Jones, M. (2000) Jordan, R. (1999) Evaluating practice: Circles of Friends. problems and possibilities. Autism: Colchester: Essex Educational Authority. the International Journal of Research & Practice, 3: 411-434. Lovaas, O. I. (1987) Behavioural treatment and normal intellectual and Jordan, R. (1992) The National educational functioning in autistic Curriculum: Access for Pupils with children. Journal of Consulting and Autism. London: Inge Wakehurst Trust. Clinical Psychology, 55: 3-9.

Jordan, R. & Jones, G. (1996) Educational Mental Health Foundation (1997) Provision for Children with Autism in Don’t Forget Us. London: Mental Scotland: Final Report of a research project Health Foundation. for the SOEID. Birmingham: School of Education, University of Birmingham. Mesibov, G. (1997) Formal and Informal Evaluations of the TEACCH Program. Jordan, R. & Jones, G. (1999) Meeting Autism: the International Journal the needs of children with autistic of Research & Practice, 1: 25-35. spectrum disorders. London: David Fulton. Morgan, H., Jones, R. (2001) A Guide Jordan, R., Jones, G. & Murray, D. (1998) to Services for Adults with Autistic Educational Interventions for Children Spectrum Disorders for Commissioners with Autism: a literature review of recent and Providers. London: Mental Health and current research. London: DfEE. Foundation.

Jordan, R. & Powell, S. (1994) Whose Mudford, O. (2000) Research in brief: curriculum? Critical notes on integration Auditory integration training: recent UK and entitlement. European Journal study. Autism: the International Journal of Special Needs Education, 9: 27-39. of Research and Practice, 4: 337-8.

Jordan, R. & Powell, S. (1995) National Autistic Society (2000) Understanding and Teaching Children The prevalence and diagnosis of autism with Autism. Chichester: Wileys. and Asperger syndrome Report to End of Day Adjournment Debate: Government Kaufman, B. (1994) Son-Rise the miracle Policy on Autism. continues. California: Kramer. Nind, M. & Hewett, D. (1994) Access to Kaye, J.A., del Mar Melero-Montes, M. Communication. London: David Fulton. & Jick, H. (2001) Mumps, measles and rubella vaccine and the incidence of Peeters, T. (1997) Autism: from Theoretical autism recorded by general practitioners: Understanding to Educational Intervention. a time-trend analysis. British Medical London: Whurr. Journal, 322: 460-463. Powell, S. & Jordan, R. (1993) Knivsberg, A.M., Wiig, K., Lind, G., Diagnosis, intuition and autism. British Nodland, M. & Reichelt, K.L. (1990) Journal of Special Education, 20: 26-29. Dietary interventions in autistic syndromes. Brain Dysfunction, 3: 315-17. Royal College of Paediatrics and Child Health (1995) Tertiary Services for Knivsberg, A.M., Reichelt, K.L., children and young people - A guide Nodland, M. & Hoien, T. (1996) for the purchase, provision and planning Autistic syndromes and diet: a follow-up of specialist services for sick children. study. Scandinavian Journal London: RCPCH. of Educational Research, 39: 223-36.

46 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers References and Further Reading

Rutter, M. (1999) Autism: two-way UNESCO (1994) The Salamanca statement interplay between research and clinical on Inclusion. Salamanca: UNESCO. work. Journal of Child Psychology and Psychiatry, 40: 169-188. Wakefield, A. J., Murch, S. H., Anthony, A., Linnell, J., Casson, D. M., Schopler, E. & Mesibov, G.B. (Eds) (1995) Malik, M., Berelowitz, M., Dhillon, A.P., Learning and Cognition in Autism. Thomson, M.A., Harvey, P., Valentine, A., New York: Plenum Press. Davies, S. E. & Walker-Smith, J.A. (1998) Illeal-lymphoid -nodular hyperplasia, Scott, F. (2000) Prevalence rates of non-specific colitis and pervasive autistic spectrum disorders in primary developmental disorder in children. aged children in Cambridgeshire: Report Lancet, 351: 637-41. to launch of All Party Parliamentary group on Autism. Waring, R. H. & Ngong, J. M. (1993) Sulphate metabolism in allergy-induced Scottish Executive (2000) The Same as autism: relevance to the disease You? A review of services for people with aetiology. (Shattock, P. & Linfoot, G. (Eds)) learning disabilities. Edingburgh: Scottish Conference Proceedings Durham 1993: Executive. Biological Perspectives on Autism, Sunderland: Autism Research Centre. Shattock, P. & Savery, D. (1997) Evaluation of urinary profiles obtained Whiteley, P., Rodgers, J., Savery, D. from people with autism and associated & Shattock, P. (1999) A gluten-free diet as disorders: part 1: classification of sub- an intervention for autism and associated groups (Linfoot, G. & Shattock, P. (Eds)) spectrum disorders: preliminary findings. Proceedings of Conference: Living and Autism: the International Journal Learning with Autism, Durham, 1997, of Research and Practice, 3: 45-66. Sunderland: Autism Research Unit. Wing, L. (1996) The Autistic Spectrum: Shields. J, (2001) The NAS EarlyBird a guide for parents and professionals. programme: partnership with parents in London: Constable. early intervention. Autism: the International Journal of Research World Health Organisation (1992) & Practice, 5. 49-56 International Classification of Diseases 10th revision. Geneva: World Health United Nations (1989) Convention Organisation. on the Rights of the Child. New York: United Nations.

Key Journals

Autism: The International Journal British Journal of Special Education. of Research & Practice. Sage Publications National Association of Special Educational Needs Good Autism Practice. British Institute of Learning Disabilities Journal of Child Psychology and Psychiatry. Association of Child Journal of Autism and Developmental Psychology and Psychiatry Disorders. Plenum Press

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 47 Useful Contacts

Useful Contacts

Autism Connect Parents and Professionals and www.autismconnect.org Autism (PAPA) Graham House Autism Europe Knockbracken Healthcare Park Avenue E. Van Becelaere Saintfield Road 26 B boite 21 Belfast BT8 8BH B-1170 Bruxelles Tel: 01232 401729 Belgium www.ulst.ac.uk/papa/ Tel: 00 32 2 675 7505 Scottish Society for Autism Autism Research Unit Hilton House School of Health Sciences Alloa Business Park University of Sunderland Whinns Road Sunderland SR2 7EE Alloa FK10 3SA Tel: 0191 5108922 Tel: 01259 720044 www.osiris.sunderland.ac.uk/autism/ www.autism-in-scotland.org.uk Autism Services National Autistic Society (NAS) Accreditation Programme 393 City Road 236 Henleaze Road London EC1V 1NE Henleaze Tel: 020 7833 2299 Bristol BS9 4NG Fax: 020 7833 9666 Tel: 0117 962 8962 E-mail: [email protected] email: [email protected] www.oneworld.org/autism/uk University of Birmingham World Autism Organisation The Course Co-ordinator Avenue Van Becelaere Autism Studies 26B, boite 21 Faculty of Education & B-1170 Bruxelles Continuing Studies Belgium University of Birmingham Birmingham B15 2TT

48 A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers About the Authors

About the Authors

Glenys Jones is an educational psychologist. She is currently a lecturer in autistic spectrum disorders in the School of Education at the University of Birmingham. She has been engaged in research in this field for 15 years.

Rita Jordan has long experience of working with people with autistic spectrum disorder. She now trains professionals to work with people with autistic spectrum disorder in the Department of Education at the University of Birmingham.

Hugh Morgan is Company Secretary and Chief Executive Officer at Autism Cymru. Previously he was Chief Executive for the West Midlands Autistic Society. He has worked with people with learning disabilities for 25 years and for the last 12 years specifically with people with autistic spectrum disorder.

A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers 49 The Foundation for People with Learning Disabilities works to improve the lives of people with learning disabilities through:

funding innovative research and service development projects and disseminating the findings

listening to people with learning disabilities and involving them in its work

seeking to influence policy

providing specific and appropriate information to people with learning disabilities.

Launched in October 1998, it is part of The Mental Health Foundation.

The Mental Health Foundation 7th Floor, 83 Victoria Street London SW1H 0HW Tel: 020 7802 0300 Fax: 020 7802 0301 Email: [email protected]

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