Guide Services Children ASD

the
F o u n d a t i o n f o r Pe o p l e
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
‘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.
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
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
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.
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.
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.
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
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
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.
Services
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.
Services
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
Services
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
Services
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
Services
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.
Services
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.
Services
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.
ervices
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
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.
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).
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.
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.
■ 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.
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.
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.
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.
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?
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
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.
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.
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
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).
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
‘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.
■ 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
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.
References and Further Reading
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Needs of Children with Autistic Spectrum Employment (1999) The Children’s Fund.
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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.
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Department of Health (1999)
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March 1, 1999. Sacramento, CA.
Quality Protects. London: DoH.
Christie, P., Newson, E., Newson, J.
& Prevezer, W. (1992) An interactive
The Children Act. London: HMSO.
approach to language and
communication for non-speaking
Department of Health (2001) Valuing
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People: A new strategy for learning
Child and Adolescent Therapy, Milton
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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
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The Education Act: Children in need of
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Gerland, G. (1997) A Real Person.
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Howlin, P. (1998) Children with Autism
and Asperger Syndrome: a guide for
practitioners and carers.
Chichester: Wileys.
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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.
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Kaye, J.A., del Mar Melero-Montes, M. Communication. London: David Fulton.
& Jick, H. (2001) Mumps, measles and
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autism recorded by general practitioners: Understanding to Educational Intervention.
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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.
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Rutter, M. (1999) Autism: two-way UNESCO (1994) The Salamanca statement

interplay between research and clinical on Inclusion. Salamanca: UNESCO.
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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
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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
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& Practice, 5. 49-56 International Classification of Diseases
10th revision. Geneva: World Health
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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
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: nas@nas.org.uk
email: ACCPROG@dial.pipex.com
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
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.
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: mhf@mhf.org.uk
Scotland Office
5th Floor
Merchants House
30 George Square
Glasgow G2 1EG
Tel: 0141 572 0125
Fax: 0141 572 0246
Email: scotland@mhf.org.uk
www.mentalhealth.org.uk
www.learningdisabilities.org.uk
Registered Charity No: 801130
Price: £16.00
ISBN: 1 903645 15 8
© The Mental Health Foundation July 2001

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A Guide to Services for Children with Autistic Spectrum Disorders

The Foundation for People with Learning Disabilities would

This guide is for commissioners and providers in education, health,

What is an Autistic Spectrum Disorder?

Autistic spectrum disorder is the name given to a range of

The Triad of Impairments

Social understanding and interaction: This is the most characteristic

There is, nevertheless, great variation in the social difficulties and

Understanding and using communication: Only in autistic spectrum

The problem is making sense of communication in all its forms -

Flexibility of thinking and behaviour: Some formulations of the

More characteristic are difficulties in flexible thinking and behaviour,

Autistic spectrum disorders can be considered at three different

factors. It is the level of psychological functioning - the way the

Individuals with autistic spectrum disorders are very different from

There will often be additional developmental difficulties, such as

Motor problems too may co-occur (not just the ‘clumsiness’

are extremely disturbed by any activity involving balance and may

Children with autistic spectrum disorders may have other

Mental health problems: Autistic spectrum disorders can become

Identification and Diagnosis

Obtaining a diagnosis: Evidence shows that there is considerable

■ ICD-10: World Health Organisation, 1992

■ DSM-IV: American Psychiatric Association, 1994.

These methods are time-consuming and not always practical in

Co-ordinating diagnosis and provision: A medical diagnosis is only

Prevalence figures for classical autism tend to give consistent

Ideas that parents could ‘cause’ autistic spectrum disorders have

Just as knowledge of autistic spectrum disorders and subsequent

There is little definitive research on the factors leading to different

■ Functional language before five years old

■ Good intellectual ability

■ Milder forms of autism

■ Early appropriate intervention

Sound inter-agency working will be the key to success in provision

Health services should provide services to:

■ Assess and diagnose children with an autistic spectrum

■ Support families in the management of their child.

■ Encourage the development of skills in pre-school children,

■ Support individuals and families in promoting positive aspects

The new Children’s Fund (1999), the National Carer’s Strategy

The role of health services in diagnosis and assessment: The first

Behavioural Strategies and Supports: Health authorities will also

Managing ‘challenging’ behaviour is often a priority for parents and

It is particularly hard for children with autistic spectrum disorders to

There is no way of dealing with troublesome behaviour that suits

may sometimes be violent or destructive but the most common

A fundamental operating principle of behavioural support teams

Health promotion: Children with autistic spectrum disorders will

Health authorities may also be asked to fund particular

Purpose Provider Nature

Diagnosis Health authority ● Screening

● 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

Respite Social services ● Respite care with