Understanding

autistic
spectrum
disorders
 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 cant tell that a person
has an ASD just by looking at them. Some people feel that
because an ASD is invisible, its harder for others to understand
or empathise with them. Although its 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.

? 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
2
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 theres a high
rate of mental health problems among them (see p. 6, below).
But many people with Asperger syndrome go on to achieve highly
in terms of employment, develop satisfying relationships and lead
fulfilling lives.

How many people have ASDs? ?

Its 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.

Its 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 dont 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.

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
3
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
Its 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 dont play
lets pretend or develop imaginative play. Its very difficult for
them to put themselves in someone elses shoes, or to grasp
symbolic or metaphorical speech. Everyday phrases like I laughed
my head off, can be very disturbing for them, and they dont
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
4
unexpected happens.
What causes ASDs? ?
We still dont 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 its very important that
parents dont 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 its 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.)

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 peoples level
of disability.

Its 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
5
to detail mean they can excel in certain jobs.
? 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. Its
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 someones 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.

? 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.
6
If you feel you have difficulties in the three areas described above,
its 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, on p. 12). You may be able
to benefit from support groups, communication skills training,
befriending schemes and counselling or psychotherapy.

Its 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 neednt stop you leading ordinary
life to the full, especially if other people can be understanding
and supportive.

How does it affect family life? ?

Its 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. Its vital that parents
seek out all the support available. Child and Adult Learning
Disability services can offer information and advice on behaviour
7
management. Some areas also have respite facilities, where the
child can stay for short periods to offer the family a break.
 Its important too, that brothers and sisters arent 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.

? 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 childrens
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 isnt quite right.

? 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, on p. 12.)
8
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. (See p. 12.)

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.

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.
9
? 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 its time to do the cooking, or a flannel
for bath time, for instance.

Because people with ASDs have difficulty understanding whats

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 whats going on, challenging behaviour
often decreases.

? 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 thats designed around their individuals needs.
There should be a plan to increase the individuals social interaction
10
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.

References

Autism and Asperger syndrome ed. U. Frith (Cambridge

University Press 1991)
Autism: an introduction to psychological theory F. Happ
(University College London Press 1994)
Autism. preparing for adulthood P. Howlin (Routledge 1997)
14.99

11
i Useful organisations

Mind
Mind is the leading mental health organisation in England and
Wales, providing a unique range of services through its local
associations, to enable people with experience of mental distress
to have a better quality of life. For more information about any
mental health issues, including details of your nearest local Mind
association, contact the Mind website: www.mind.org.uk or
MindinfoLine on 0845 766 0163.

Benefits Enquiry Line

tel. 0800 882 200, web: www.dss.gov.uk/ba/
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

Citizen Advocacy Information and Training (CAIT)

Unit 162 Lee Valley Technopark, Ashley Road, London N17 9LN
tel. 020 8880 4545, web: www.citizenadvocacy.org.uk
For people wanting an advocate, or information about advocacy

Contact a Family
209211 City Road, London EC1V 1JN
tel. 020 7608 8700, web: www.cafamily.org.uk
Help and advice for families. Parent support groups
12
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, 1820 Crucifix Lane, London, SE1 3JW
infoline: 0800 328 5050, web: www.skill.org.uk
Promotes education, training and employment

13
 Further reading

The burden of sympathy: how families cope with mental illness

D. A. Karp (Oxford University Press 2001) 10.99

The complete guide to mental health E. Farrell (Mind/Vermilion
1997) 9.99

Disabled people and mental health support services (Mind
2003) 1

The food and mood handbook A. Geary (Thorsons 2001) 12.99

Freaks, geeks and Asperger syndrome: a user guide to
adolescence L. Jackson (Jessica Kingsley Publishers 2002) 12.95

Good mood food M. Van Straten (Cassell 2002) 10.99

How to cope as a carer (Mind 2003) 1

How to cope with loneliness (Mind 2004) 1

How to deal with anger (Mind 2003) 1

How to improve your mental wellbeing (Mind 2004) 1

How to increase your self-esteem (Mind 2003) 1

How to look after yourself (Mind 2004) 1

How to stop worrying (Mind 2004) 1

Making sense of herbal remedies (Mind 2004) 3.50

Making sense of homeopathy (Mind 2004) 3.50

Mental Illness; a handbook for carers eds. R. Ramsay,
C. Gerada, S. Mars, G. Szmukler (JKP 2001) 15.95

The Mind guide to advocacy (Mind 2004) 1

The Mind guide to food and mood (Mind 2004) 1

The Mind guide to managing stress (Mind 2003) 1

The Mind guide to massage (Mind 2004) 1

The Mind guide to physical activity (Mind 2004) 1

The Mind guide to relaxation (Mind 2004) 1

The Mind guide to spiritual practices (Mind 2003) 1

The Mind guide to yoga (Mind 2004) 1

Understanding anxiety (Mind 2003) 1

Understanding depression (Mind 2004) 1

Understanding learning disabilities (Mind 2004) 1

14
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Mind works for a better life for everyone
with experience of mental distress
Mind does this by:
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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
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