COULD THIS BE AUTISM?

Introduction

"I can't quite put my finger on it, but there's something wrong with John. At first we thought maybe he was deaf, as he didn't respond when we called his name, but the doctor says his hearing is fine. And there's nothing wrong with his intelligence, judging by the speed at which he completes jigsaws. But he doesn't play with his toys like normal kids his age. Instead he spends hours watching the washing machine go round and round. Other people tell me I'm just being neurotic, but I'm his mother. I know something's up. I just wish I knew what it was...."

All too often this is the type of story told to front-line professionals, as parents and carers desperately seek answers to the cause of their child's distressing and strange behaviour.

Yet a great deal of misery could be prevented if sufficient numbers of the professionals involved had the knowledge and information to hand to ask themselves whether this could be autism

Autism is a disability that prevents children making contact with other people. It can profoundly affect their behaviour, their outlook and their ability to communicate. Its impact can be debilitating. A recent survey shows that, in many authorities, a large percentage of children with autism are not identified - with tragic consequences.

For unless the condition is diagnosed, children with autism face a bleak future. They are condemned to a peripheral existence, deprived of self-esteem, locked into cycles of repetitive and obsessive behaviour, and unable to communicate with those around them.

It is not just the child who suffers, but also those closest to them. Their condition can destroy the lives of their families, placing immense strain on parents and siblings. In mainstream education they can pose teachers (who are unsupported) tremendous problems with classroom management.

The purpose of this article is therefore to stimulate awareness of autism, to explain the condition, and highlight the signs to look out for. It is aimed at everyone working in health, education and social care (from GPs, health visitors, medical officers, clinical psychologists and speech and language therapists to social workers, educational psychologists, paediatricians and teachers). By identifying autism as early as possible in a child's life you will be giving them the best opportunity to achieve their full potential.

Definition

Autism is a disability that affects the way a child communicates and relates to other people around them. Though it describes a condition with wide ranging degrees of severity (hence the description, "autistic spectrum disorder"), all those affected have a triad of impairments which affects:

• social interaction
• social communication
• imagination

In addition to this triad, repetitive behaviour patterns are a notable feature.

Autism also includes the condition known as Asperger syndrome which describes children who show the characteristics of autism, but are of average or above average intelligence and have good communication skills. The estimated prevalence rate of autistic spectrum disorders, including Asperger syndrome, is 56 per 10,000 people in the U.K.

Causes

The exact causes of autism have not yet been fully established. It is, however, evident from research that autism can be caused by a variety of conditions affecting brain development and which occur before, during or after birth. They include maternal rubella, tuberous sclerosis, lack of oxygen at birth, and complications of childhood illnesses (such as whooping cough and measles). In many instances, genetic traits appear to be important, although the sites of the relevant genes have yet to be identified.

Treatment

As yet there is no cure for autism, but specialised education and structured support can help maximise a child's skills and minimise any behaviour problems. The right kind of education and care programmes are essential. They make a real difference to the child's life enabling each individual, whatever their level of disability, to achieve as great a degree of independence as possible.

Early diagnosis

It is crucial that autism is recognised early in a child's life to enable effective intervention and management of the condition. Early diagnosis and intervention is also essential, to ensure families and carers have access to appropriate services and professional support.

Certainly the signs are there to be recognised. In most cases, the triad of impairments emerges in the first two to three years of life. Indeed, there are often indications of developmental problems in the first year. However, because autism is a complex condition it is easy to miss important clues.

Points worth remembering are:

• the severity of the impairments differs from person to person
• different aspects of the behaviour pattern are more obvious at some ages than at others
• three quarters of children with autism also have mild or severe learning disabilities
• the child's personality, education and social environment can markedly affect their behaviour
• there may be other associated disabilities including epilepsy, cerebral palsy and sensory impairments

Symptoms

Autism is a pattern of abnormal development that unfolds over time, so diagnosis depends upon obtaining a detailed history of the child's development, and a careful assessment of skills and abilities.

In infancy one of the most important indications that autism could be present is the absence, or very delayed development of drawing the attention of parents and others to objects or events. In normal childhood development, by the time a child is 12-18 months they are usually pointing at things and trying to engage the interest of the person they are with to invite them to look too. They also gain attention by bringing toys and make eye contact when doing this. If this behaviour does not occur or begins very late and is limited to the child's own interests, an autistic disorder should be suspected.

Other key signs which usually emerge in the first few years of life are the triad of impairments, combined with a repetitive pattern of activities and sometimes challenging behaviour.

Triad of impairments
Social interaction

A child with autism will:

• often appear aloof and indifferent to other people, especially other children, although some will enjoy certain forms of active physical contact
• passively accept social contact and even show some signs of pleasure in this, but will rarely make spontaneous approaches
• occasionally approach other people but in an odd, inappropriate, repetitive way, paying little or no attention to the responses of those they approach

Social communication

A child with autism will:

• not appreciate the social uses and the pleasure of communication; this is true even of those who have a lot of speech, which they use to talk "at" others and not "with" them
• not understand language is a tool for conveying information to others; they may be able to ask for their own needs but find it hard to talk about feelings or thoughts and will not understand the emotions, ideas and beliefs of other people

Imagination

A child with autism will:

• be unable to play imaginatively with objects or toys or with other children or adults
• tend to focus on minor or trivial things around them, for example an earring rather than the person wearing it, or a wheel instead of the whole toy train
• have a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively
• miss the point of pursuits that involve words e.g. social conversation, literature, especially fiction and subtle verbal humour

Repetitive activities

Alongside the triad of impairments, the child will always show repetitive activity or behaviour. At a simple level, this might involve repeatedly flicking their fingers, or an object like a piece of string.

More complex signs might include an insistence on following an identical route to certain places, a lengthy bedtime ritual, or the repetition of a sequence of odd bodily movements.

The child may also form an intense attachment to particular objects for no apparent purpose, arrange objects in lines or patterns, or collect things like pebbles or plastic bottles. They may become fascinated by certain topics, such as electricity, astronomy, birds or train timetables, even specific people, as well as asking the same series of questions and demanding standard answers.

Challenging behaviour

The child may also demonstrate challenging behaviour, such as running away, screaming, biting or kicking other people, grabbing things off counters in shops, socially unacceptable habits, or making naive and embarrassing remarks.

Special skills

About 10% of children with autistic spectrum disorders have some special skill at a much higher level than the rest of their abilities, for example music, art, numerical calculations or jigsaw puzzles. Some have a remarkable memory for dates and things that particularly interest them.

Associated disabilities

Autistic spectrum disorders can occur in association with another physical or psychological disability, such as cerebral palsy or Down's syndrome, with a learning disability such as dyslexia, or a language disorder. They may not really understand the meaning of gestures, facial expressions or tone of voice. Higher functioning children do use gestures but these tend to be odd and inappropriate.

They tend to understand and use language very literally, with an idiosyncratic, sometimes pompous choice of words and phrases and limited content of speech. Though some children are fascinated with words, they will not use them to interact socially.

Diagnosis

None of these conditions can "explain away" autistic behaviour. If autism is present as well as another disability, it is essential that this is recognised, since it has important implications for treatment and prognosis.

The task is therefore to decide whether the triad of impairments also exists. It is no use asking: "Is this autism or a language disorder, deafness etc?". The question should always be: "This child may have a language disorder, deafness etc. Does he or she also have the triad of impairments which characterises autism?".

Listening to parents

Sympathetic listening to parents and carers can provide a wealth of information and the following are parental comments that should move you to consider whether this could be autism.

• "His speech is delayed, he's not talking. He doesn't respond to his name, can he be deaf?"
• "He's not interested in playing with toys."
• "At the play-group he won't have anything to do with the other children."
• "He hits other children if they get in his way."
• "He's not very affectionate, he doesn't like being touched and cuddled. He clings to me all the time and won't let me out of his sight."
• "He insists on the same routine and is very upset if this is changed."
• "He seems very different from other children of his age."

Every child is different

In looking out for the signs, it is important to remember that features of the condition can vary widely from one child to another and that there is no single feature that, if not present, excludes autism. For example, a child with autism may make eye contact, speak with perfect grammar or put an arm round another child who is crying. Occasional behaviour of this kind does not exclude autism. It is the overall pattern that is relevant, not the intermittent flashes of "normality".

Referral

If you suspect that autism is present it is essential that you refer the child for a specialist diagnosis and assessment as early as possible (either your local GP, the Child Development Centre or the Child and Family Guidance Centre), or (if you are a teacher) to your LEA's educational psychologist. In theory, every local authority is supposed to provide such specialist expertise, but in practice this is not always the case. If you cannot find a local expert, then contact the information service of The National Autistic Society or one of its offices. They will be able to advise you about the nearest source of expertise and help.

Support

Autism affects every aspect of a child's life, from education through to social activity, so it is vital that professionals work together to provide the wide range of support required to help the child, family or carer.

At present however, provision for children with autism is extremely variable. A few authorities provide, or support, excellent specialist services but generally there is a considerable shortfall.

Health services

There are two main areas of Health Authority responsibility The first is to ensure that every child who has the condition is diagnosed early, the other is to ensure that an appropriate individual programme of care is developed. Their responsibilities should therefore include:

• specialist formal diagnosis and assessment; this is the cornerstone in planning effective services both for the individual and the family
• clinical support for additional problems from compulsions and disabling routines to epilepsy, hyperactivity and various forms of challenging behaviour and self injury
• the intervention of a clinical psychologist and psychiatrist experienced in autistic spectrum disorders to diagnose and treat underlying or attendant problems
• early detection and intervention, with more screening systems through primary medical services
• the formulation of effective communication strategies, by the whole clinical team including speech and language therapists to support parents and professionals

Social services

Social Services Departments have a specific duty to support and promote the interests of children in need. This includes children with autism. The 1989 Children Act identifies ways in which departments are empowered to help by: listening to children; providing home based services, or residential or substitute care; and recognising and planning for children with disabilities.

In particular, Social Services Departments should work to ensure:

• the creation of a service plan that ensures each child's unique needs are met; this plan should reflect the principles of the Children Act namely, paramount importance of the needs of the child, parental responsibility, partnership, prevention, and protection
• the development of intensive, individual therapeutic programmes involving parents and professionals, particularly to develop communication skills and reduce challenging behaviour.
• effective support to families so that children can be maintained within their home environment (e.g. respite care, counselling, including genetic counselling, sibling support, meeting other parents, practical advice, welfare benefits)
• close co-ordination and liaison between the various professionals working to help and support the child and their family

Education

As a spectrum disorder, autism demands flexible solutions. In practical terms, a range of educational provision is required.

At present, a minority (approximately 1 in 24) whose autism is severe attend a unit or school specifically for children with autism for part of their educational career, either full or part-time. Most are taught in schools for children with moderate or severe learning difficulties, while the more able child with autism and/or those who present few management problems for staff attend mainstream primary and/or secondary schools, often with additional specialist support.

Most authorities increasingly aim for all children with special needs to be taught within their local mainstream school. This gives such children access to other children who offer good models of language, skills and behaviour, and the possibility of having neighbourhood friends.

For many children with autism, mainstream education is both appropriate and desirable. With the support and advice of knowledgeable professionals, it can be adapted to meet their individual and specific needs. For others however, such an environment can be terrifying and confusing, where things happen at random and in unexpected ways. This leads to distress for the child and disruption for the school.

Higher-functioning children with autism, whose social difficulties make them vulnerable to bullying or abuse, need support and guidance to prevent them from becoming increasingly isolated in the mainstream environment.

Every local education authority should provide:

• early specialist intervention; the earlier this starts, the better the outcome
• a statement of Special Educational Needs based on the child's individual condition; the Code of Practice (DFE, 1994) sets out five stages in assessing the educational needs of any child thought to have special requirements
• an informed balance of mainstream and specialist education; there are presently 13 schools for children with autism, run by the NAS and local autistic societies; a third of LEAs have also set up their own specialist provision for children with autism, usually a unit for between 10 and 20 children attached to a mainstream or a special school; there are also a number of schools, run by other voluntary organisations; additionally, specialist provision must extend to pre-vocational and further educational services
• informed staff; everyone who teaches children with autism, whatever the type of placement, should have knowledge of autism and an understanding of the main implications of the impairments; where there is a specialist unit for autism in the authority, then this can be a local resource for information and advice on the condition
• the right environment; whatever the location, teaching approaches must be deeply empathetic and the environment organised to reduce clutter and promote calm; structure, routine and consistency are all important; this approach must pervade all areas of the school, from the buildings and facilities through to staff training and the curriculum
• individual help for the child; children with autism have highly individual needs in the areas of thinking, self organisation and communication, so a programme of support must be individually determined; this can give them a framework to understand and communicate with the world around them and reduce very high levels of anxiety

Approaches to autism

Because autism does not have a single cause, it requires a range of structured, flexible and imaginative solutions. Methods employed within the National Autistic Society include educational approaches involving a high level of empathy, structure, and continuity, which build on existing strengths (e.g. TEACCH - Treatment and Education of Autistic and related Communication Handicapped Children). Other methods include positive approaches (building in success for the child in a highly structured environment), relaxation, physical programmes to reduce anxiety, and neurological interventions focused on underlying disorders. All approaches involve a high level of skilled staff support and adaptations to the National Curriculum to ensure coherence with mainstream education.

Numerous other therapeutic approaches have been introduced in different countries over the years which claim to improve the condition of children with autism. These include: The Higashi approach; Options; the LOVAAS method; Facilitated Communication; Holding Therapy; Auditory Integration Therapy. The National Autistic Society has more information on all of these approaches explaining the pros and cons of each.

In general, the National Autistic Society supports all initiatives designed to improve approaches to care, treatment and education. However before endorsing any approach, some of which may have controversial elements, the society would wish to see a scientific evaluation to ensure that children and their families are safeguarded.

Accreditation

The National Autistic Society, with the help of funding from the Department of Health, has developed an accreditation scheme for autism specific education care and care programmes. This quality assurance system, which is quite distinct from existing registration or education inspection procedures, offers parents, professionals and funding authorities a way of ensuring the relevance and quality of education and care services. Piloted in the NAS and affiliated local autistic society network of schools and units, it is now available to all those offering education and care provision for children with autism. There is also an accreditation programme for services for adults with autism.

Training

The National Autistic Society, in conjunction with the Inge Wakehurst Trust, is currently expanding its training services to meet the increasing demand for courses that develop the skills and knowledge of all those involved with autism.

A range of courses, including "in-house" customised programmes for statutory, private and voluntary organisations is offered. This includes:

• a rolling programme of one-day courses and conferences for parents and professionals
• two-day intensive multi-disciplinary training courses aimed at professionals and practitioners
• one-off short courses and arranging speakers for specific groups
• packaged training materials

Additionally the NAS has worked with the University of Birmingham School of Education in developing accredited modular training courses for those specialising in teaching children with autism. These are available on a distance learning and taught basis, leading to the award of an advanced certificate in education.

The National Autistic Society is also working with a number of other independent bodies including the British Institute of Learning Disabilities (BILD) in developing conferences and specialised courses for front line professionals, and has information about a range of courses around the U.K.

Practical help

Health, education and social care professionals are in a key position to help children with autism by recognising the signs of the condition.

Talking to parents

Parents know their child better than anyone else, and will have spent a great deal of time learning about their child's behaviour and how to manage it. They are therefore an invaluable resource and many will have a ready-made library of articles, books and videos on autism which it may be possible to borrow.

Local societies and branches throughout the country can also be a source of information and assistance.

Learning about autism

All professionals who work with children with autism need a good knowledge of the condition in order to understand their behaviour, and to assess and manage their special needs. A number of training courses are available throughout the country to help you acquire these skills.

Other professionals

Other professionals can give essential advice and information on autism. Ideally, every local authority should nominate one professional, with responsibility for co-ordinating and distributing information on autism throughout the authority.

Lobbying

Professionals have an important role to play in increasing awareness and understanding of autism, and in helping to ensure that resources are made available for appropriate services throughout the country.

Information sources

Over the years, many books and leaflets on all aspects of autism have been published. An extensive range is detailed in a publications list which is available from the National Autistic Society. You can join the growing membership of the National Autistic Society and/or a local autistic society or branch and receive regular information on autism and details of services, publications and training courses.

Membership of The National Autistic Society is £11 a year, and includes three issues of the newsletter "Connection". A magazine, "Communication", containing articles by parents and professionals and with details of research publications and conferences, is available by subscription at £10 per annum for three issues.

Autistic societies

The National Autistic Society acts as an umbrella organisation working with over 70 local societies and branches throughout the U.K. to improve and develop services for the full spectrum of autistic disorders. Your nearest point of reference can be obtained by contacting the National Autistic Society offices