Understanding autistic spectrum disorder

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What is autism?
What is Asperger syndrome?
How many people have ASDs?
How are ASDs diagnosed?
What causes ASDs?
Is there a cure?
What other difficulties might be involved?
What if I think I may have Asperger syndrome?
How does it affect family life?
What should I do if I think my child has an ASD?
Why is it important to get a diagnosis?
What kind of support can I get?
What about education?
What help with communication is available?
How can people with ASDs be supported to live full lives?
References
Useful organisations
Further reading

This booklet explains autistic spectrum disorders and Asperger syndrome. It looks at the causes, the symptoms and how a diagnosis is made. It also examines the impact these problems can have on the individual and their family, tells you what help is available for all concerned and how you can access it.

What is autism?

Autism is a problem people grow up with, affecting how they interact with the world around them and other people. An American doctor, Leo Kanner, first identified autism in 1943. Today, we refer to these disabilities as "autistic spectrum disorders" (ASDs), because some people are more severely disabled than others.

ASDs cause difficulties with the ability to communicate and to interact socially with other people, and also restrict the way people lead their lives. Unlike some disabilities, you can’t tell that a person has an ASD just by looking at them. Some people feel that because an ASD is 'invisible', it’s harder for others to understand or empathise with them. Although it’s not thought of as a learning disability itself, a large number of people who have ASDs have some level of learning disability as well. Most people with ASDs receive services and support from learning disability organisations.

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What is Asperger syndrome?

Someone with Asperger syndrome may have autistic symptoms but be of average or above average intelligence. In many ways, this condition can be harder to cope with because it is much more subtle and more difficult to diagnose. People with Asperger syndrome may not receive appropriate help and support, because the problem is not officially defined as a learning disability and they tend to fall between services. Other people may also be less forgiving of their difficulties; people with Asperger syndrome often become the target of bullying.

Someone with Asperger syndrome is also more likely to be aware of the restrictions and loneliness they face, and there’s a high rate of mental health problems among them. But many people with Asperger syndrome go on to achieve highly in terms of employment, develop satisfying relationships and lead fulfilling lives.

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How many people have ASDs?

It's difficult to say. ASDs are hard to diagnose because, superficially, they resemble a number of other difficulties, including severe learning disabilities and impaired hearing. Experts estimate that there are many undiagnosed cases, and there is no central register for people with ASDs. It's currently estimated that between one and five people in every thousand could be affected. Of these, about 50 per cent may also have severe learning disabilities, while about 20 per cent have average or above average intelligence. Boys are three times more likely to be affected than girls, but we don't yet understand why. ASDs seem to be more common nowadays, but this is probably because more people are aware of the condition and health professionals are getting better at detecting it.

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How are ASDs diagnosed?

ASDs affect people in three different ways, to varying degrees. Clinicians refer to these three characteristics as 'the triad of impairment' and need evidence of each to make this diagnosis. They are only able to do so once children reach a certain level of development, at around two or three years old.

Communication
People with ASDs have difficulty with words and other ways of expressing themselves, and some never develop any speech. It also affects their ability to understand what others are saying to them. This can lead to great confusion, anxiety and frustration.

Body language, facial expression and other non-verbal ways of communicating, can be just as puzzling to them, and may lead them to behave inappropriately. People who have Asperger syndrome may have very good language skills, but the way that they speak - their tone of voice or choice of words – may seem unnatural or very formal.

Social interaction
It’s not surprising that communication difficulties bring problems with social situations. Someone with a severe ASD may seem completely withdrawn and uninterested in other people. In milder cases, a person may not understand the unspoken 'rules' of certain social situations. Conversations can feel odd or one-sided, and subtleties such as humour or teasing may be completely lost. Group situations can be very anxiety provoking, and someone with an ASD may withdraw, or express this anxiety in their behaviour, by rocking back and forth, for example. It can be devastating for a parent to feel that their child is not interested in loving or cuddling, but is in a world of their own.

Restricted activities and imagination
Imaginative or creative thinking is limited. Children don’t play "let's pretend" or develop imaginative play. It’s very difficult for them to put themselves in someone else’s shoes, or to grasp symbolic or metaphorical speech. Everyday phrases like "I laughed my head off", can be very disturbing for them, and they don’t usually grasp abstract concepts, such as time passing. All this increases their social difficulties. In compensation, people with ASDs place great value on structure and routine. They will often follow a limited range of pursuits, rigidly and repetitively. In milder cases, this may be an interest or hobby, which is obsessive or taken to extremes. Most people with ASDs prefer very predictable patterns and routines, and can become extremely upset when anything unexpected happens.

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What causes ASDs?

We still don’t know. At one time, some doctors believed childhood autism to be the result of "refrigerator parenting"; that is, a lack of emotional warmth, which caused the child to withdraw. Experts now strongly disagree with this idea, and it's very important that parents don’t consider themselves to blame. Most specialists now believe that ASDs are due to physical causes in the brain, and not upbringing. Some research shows that genetic factors play a part, and it’s likely that a number of different conditions affect the brain development before, during or just after birth.

Autism and MMR
Today, autism is well known largely due to a piece of research that alleged a possible link between autism and the MMR (measles, mumps and rubella) vaccination. Health professionals have heavily criticised this research. The popular opinion today is that there is no conclusive evidence linking autism with the MMR, and that there are far greater risks involved in not giving children this vaccination. (More information on this is available through the Department of Health. See Useful organisations, below.)

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Is there a cure?

Autism is a lifelong condition, for which there is no known cure. However, there are many treatments and interventions, which can greatly improve their quality of life, whatever people’s level of disability.
It's possible, for instance to teach someone who lacks words to use signs or symbols to express themselves. Some people with ASDs are able to develop some social skills, such as making eye contact, smiling, and even showing affection. More able people with ASDs find that their honesty, love of routines and attention to detail mean they can excel in certain jobs.

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What other difficulties might be involved?

Some individuals with ASDs have sensory difficulties, which means that they can get upset if they are over or under stimulated. It's possible that many of the typical behaviours that are associated with autism are attempts to even this out. Rocking, hand flapping, twiddling or flicking objects and even self-injury might be attempts to self-stimulate. Some people have motor control problems, which affect movement, and they may appear clumsy, or have an unusual way of walking. Toilet training can present problems, which some individuals never overcome. Sleep problems are also very common and both of these can be particularly hard on the whole family.

People with ASDs are more likely than usual to experience mental health problems. Given the problems they face each day, this seems scarcely surprising. Social situations, changes in routine and unstructured time provoke anxiety. Not being able to communicate basic wants and needs or to understand what someone’s trying to explain is frustrating, confusing and even frightening. Being unable to talk about or make sense of all these extreme feelings may lead people with ASDs to express themselves through aggressive, self-injuring or similarly challenging behaviour. Unfortunately, common problems such as anxiety disorders and depression, which may result, often go unrecognised and untreated, particularly if the person has severe learning disabilities.

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What if I think I may have Asperger syndrome?

Some people with Asperger syndrome are diagnosed at a young age and can get to know and understand their condition early on. Many others do not receive a diagnosis until well into adulthood, because their symptoms may seem relatively minor. This can mean growing up feeling very isolated and somehow different from their peers, without understanding why.

If you feel you have difficulties in the three areas described above, it’s important to discuss your concerns with your GP. Some GPs are still quite unfamiliar with Asperger syndrome and you may wish to see someone who specialises in ASDs. Often, obtaining a correct diagnosis can bring reassurance and relief, but it can also be a very difficult time. There is help and support available specifically for people who have Asperger syndrome, if you are persistent. (See Useful organisations.) You may be able to benefit from support groups, communication skills training, befriending schemes and counselling or psychotherapy.

It's important to bear in mind that along with certain difficulties, Asperger syndrome can also bring special skills and strengths, which can bring great satisfaction, for example, through your job. Having Asperger syndrome needn't stop you leading ordinary life to the full, especially if other people can be understanding and supportive.

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How does it affect family life?

It's very common for parents to feel guilty and angry with themselves, each other or even the baby. Parents often describe feeling bereaved, and in a sense they have suffered the loss of the non-disabled baby they had hoped for. Talking about these emotions to a counsellor or psychotherapist may help you to come to terms with what has happened. You may find that joining a support group for people in similar situations can be a great source of both emotional and practical support.

A child with an ASD may seem withdrawn, unreachable and uninterested in expressions of affection, which can make it especially hard to develop loving bonds, and this can be heartbreaking. Day-to-day problems, such as sleep disturbances or challenging behaviour, can be a real strain. It's vital that parents seek out all the support available. Child and Adult Learning Disability services can offer information and advice on behaviour management. Some areas also have respite facilities, where the child can stay for short periods to offer the family a break.

It's important too, that brothers and sisters aren’t forgotten. Other children risk becoming isolated if they feel unable to bring friends home. Older siblings who act as assistant carers may become resentful. Family or systemic therapy can help everyone to think and talk about their feelings together.

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What should I do if I think my child has an ASD?

Discuss any concerns with your health visitor or GP. If your child is already in school, then talking to a teacher or school nurse may be the first step. Many difficulties are picked up through children’s regular developmental checks, but autistic features can often be overlooked or misinterpreted. You may want to ask for a referral to a specialist with expertise in ASDs. Pin down in what way you feel your child is restricted, and having problems communicating and socialising. Trust your parental instincts, but bear in mind that doctors will rarely diagnose ASDs before a child is two or three years old, even if you feel something isn’t quite right.

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Why is it important to get a diagnosis?

Some people see a formal diagnosis as an unhelpful label, but many find it helpful for many reasons. You can begin to gather knowledge and develop an understanding of the condition. Parents can stop blaming themselves or their child for their odd or withdrawn nature, and can access the right services to support their complex needs. This should all help reduce the stress. Some professionals also feel that the earlier a child with an ASD begins receiving interventions, the more effective they are likely be.

Your family can also become part of the ASD community, which can mean feeling less isolated. You may wish to join a local support group or get information and advice from organisations such as The National Autistic Society. (For details, see Useful organisations.)

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What kind of support can I get?

On a very practical level, gaining a diagnosis of an ASD means you can ask for appropriate services and support, including financial support. In the first instance, you should contact the Benefit Enquiry Line for information, advice and application packs. You may be entitled to payments under The Carers and Disabled Children Act 2000 or the Disability Living Allowance (DLA). Children on the middle or higher rate of DLA may be eligible for Invalid Care Allowance. You may also be entitled to Income Support, Council Tax Benefit and Housing Benefit. Some voluntary and charity organisations offer grants.

Services
Most areas have Community Learning Disability Teams, run by Social Services and local Health Authorities. These usually include psychologists, psychiatrists, speech and language therapists, occupational therapists and community nurses. In some areas there are also specialist teams, experienced in managing challenging behaviour, who have expertise in ASDs. Residential and day services, can offer both long and short-term placements. These may be government-run or funded by private, voluntary or charitable agencies. The quality varies considerably.

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What about education?

Once a child has a diagnosis of an ASD, "statementing" can begin. This is an assessment of their special educational needs. You will need to decide whether you would prefer a mainstream school or a more specialist establishment. Some children with Asperger syndrome, achieve very high academic standards in a mainstream school, although they may benefit from extra support at break times to help them truly integrate with their peers. Parents need to be supported to view as many different options as are available. The National Autistic Society can provide a list of schools that are accredited by them.

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What help with communication is available?

People with milder conditions and good verbal skills can join a social skills training group to help them learn the "rules" of social interaction, such as body language and how people "take turns". A speech and language therapist can help people with learning disabilities find other ways of expressing themselves, for example through a simple form of sign language called "Makaton", or through photos, pictures or symbol cards. Many places use "objects of reference" to keep individuals informed, showing them a wooden spoon when it’s time to do the cooking, or a flannel for bath time, for instance.

Because people with ASDs have difficulty understanding what's said to them, it helps to offer as many visual clues as possible. A visual timetable can help keep things predictable. Remember that symbolic speech and metaphors are confusing, and even disturbing. Saying exactly what you mean can avoid any difficulties. Thinking creatively and sensitively about how to help someone with an ASD develop his or her communication skills is extremely important. Once a person is able to communicate their basic needs and understand what's going on, challenging behaviour often decreases.

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How can people with ASDs be supported to live full lives?

A structured, consistent and predictable environment is always reassuring. Avoid changes  to routine, wherever possible. Sensory stimulation is important, so have plenty of things to look at, feel or smell. Although symbolic play is meaningless for children, they can enjoy and share activities based on sensory experiences, such as blowing bubbles, having a massage or watching lights.

Services for people with ASDs should include regular reviews, and a care plan that’s designed around their individual’s needs. There should be a plan to increase the individual’s social interaction opportunities, as well as to teach them strategies to enhance their independence.

Where challenging behaviour presents a problem, appropriate professionals should be asked to help devise plans to cope with this. Making a note of the behaviour can help to identify and eliminate any triggers. Behaviour management techniques, such as positive reinforcement, reward systems and redirection, are also very effective. Some people with ASDs also benefit from emotion identification training and anger management programmes, which help them learn to understand and monitor their feelings.

Befriending schemes offer a chance for social interaction and for developing relationships. Advocacy organisations can help people who are not able to speak for themselves to get their needs met. Many individuals find that counselling or psychotherapy helps them to overcome some of their difficulties, and research shows that cognitive behavioural therapy (CBT) is particularly effective. The National Autistic Society has a database of therapists with experience in ASDs. People with mild disabilities and Asperger syndrome can benefit from support with finding and maintaining employment. Where people with ASDs are able to work within their field of special interest, this is often very successful and fulfilling for the individual.

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References
Autism and Asperger syndrome ed. U. Frith (Cambridge University Press, 1991)
Autism: an introduction to psychological theory F. Happé (University College London Press, 1994)
Autism: preparing for adulthood P. Howlin (Routledge, 1997)

Useful organisations

Benefits Enquiry Line
tel. 0800 882 200
web: www.direct.gov.uk/DisabledPeople/FinancialSupport/
For information about benefit entitlement

British Institute of Learning Disabilities (BILD)
Campion House, Green Street, Kidderminster, Worcestershire DY10 1JL
tel. 01562 723 010
web: www.bild.org.uk
Aims to ensure people with learning disability lead full and active lives

The Centre for Social and Communication Disorders
Elliot House, 113 Masons Hill, Bromley, Kent BR2 9HT
tel. 020 8466 0098
Diagnostic unit. Trains professionals in diagnosing ASDs

Contact a Family
209-211 City Road, London EC1V 1JN
tel. 020 7608 8700
web: www.cafamily.org.uk
Help and advice for families. Parent support groups

Department of Health
Richmond House, 79 Whitehall, London SW1A 2NL
web: www.dh.gov.uk

Makaton Vocabulary Development Project
31 Firwood Drive, Camberley, Surrey, GU15 3QD
tel. 01276 61390
web: www.makaton.org/index.htm
Language programme for those with communication disabilities

Mencap
123 Golden Lane, London EC1Y 0RT
tel. 020 7454 0454
web: www.mencap.org.uk
Helps people with learning disabilities, their families and carers

The National Autistic Society
393 City Road, London EC1V
tel. 020 7833 2299
web: www.nas.org.uk
Information about autism and Asperger syndrome

People First
3rd Floor, 299 Kentish Town Road, London NW5 2TJ
tel. 020 7485 6660
web: www.peoplefirstltd.com
Self-advocacy organisation run by and for people with learning
difficulties

Skill: National Bureau for Students with Disabilities
Chapter House, 18-20 Crucifix Lane, London, SE1 3JW
infoline: 0800 328 5050
web: www.skill.org.uk
Promotes education, training and employment

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Further reading

The burden of sympathy: how families cope with mental illness D. A. Karp (Oxford University Press 2001)
The complete guide to mental health E. Farrell (Mind/Vermilion 1997)
Disabled people and mental health support services (Mind 2003)
The food and mood handbook A. Geary (Thorsons 2001)
Freaks, geeks and Asperger syndrome: a user guide to adolescence L. Jackson (Jessica Kingsley Publishers 2002)
Good mood food M. Van Straten (Cassell 2002)
How to cope as a carer (Mind 2003)
How to cope with loneliness (Mind 2004)
How to deal with anger (Mind 2003)
How to improve your mental wellbeing (Mind 2004)
How to increase your self-esteem (Mind 2003)
How to look after yourself (Mind 2004)  
How to stop worrying (Mind 2004)
Making sense of herbal remedies (Mind 2004)
Making sense of homeopathy (Mind 2004)
Mental Illness; a handbook for carers eds. R. Ramsay, C. Gerada, S. Mars, G. Szmukler (JKP 2001)
The Mind guide to advocacy (Mind 2004)
The Mind guide to food and mood (Mind 2004)
The Mind guide to managing stress (Mind 2003)
The Mind guide to massage (Mind 2004)
The Mind guide to physical activity (Mind 2004)
The Mind guide to relaxation (Mind 2004)
The Mind guide to spiritual practices (Mind 2003)
The Mind guide to yoga (Mind 2004)
Understanding anxiety (Mind 2003)
Understanding depression (Mind 2004)
Understanding learning disabilities (Mind 2004)

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This booklet was written by Justine Gibson
First published by Mind 1999. Revised edition © Mind 2004
ISBN 1-903567-57-2
No reproduction without permission