Autism spectrum disorders Booklet for parents and carers- Scottish Intercollegiate Guidelines Network 2012

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Acknowledgement
We would like to thank all the young people who took part in
the focus groups to provide us with their ideas and illustrations
for this booklet.
© Scottish Intercollegiate Guidelines Network
ISBN 978 1 905813 27 8
First published 2008
Reprinted October 2012
SIGN consents to the photocopying of this booklet for the
purpose of implementation in NHSScotland
1
Contents
2 What is this booklet about?
3 What are autism spectrum disorders (ASD)?
4 Initial concerns
10 Assessment and diagnosis
16 What can help?
23 Services
25 Information and support
42 List of useful terms
2
What is this booklet about?
This booklet is for parents and carers of children and young
people who:
hhmay have autism spectrum disorder (ASD); or
hhhave already been diagnosed with ASD.
We have written another booklet especially for young
people, and there are details about this on page 34. Both
booklets are based on a national guideline on children and
young people with ASD.
The booklet explains:
hhwhat ASD is;
hhhow it is diagnosed; and
hhwhat can help.
There are details of support organisations and other places
where you can get more information at the end of the
booklet on pages 31-41.
We have also explained the terms we use in this booklet
on page 42.
3
What are autism spectrum disorders (ASD)?
Autism spectrum disorders (ASD) is the name for a group
of similar conditions including autism, atypical autism and
Asperger’s syndrome. We use the name ASD in this booklet
to cover all of these.
If a young person has ASD, they usually have three areas of
difficulty during their development. These are:
hhsocial difficulties;
hhdifficulties with language and communication; and
hhdifficulties with their behaviour and using their
imagination.
Some signs of possible ASD are listed in the tables on pages
5-9. Children may show early signs of ASD during their
childhood, or only later in their teenage years.
We know that ASD can be linked to some medical
conditions. But, for many young people, the cause of ASD
is not known.
In Scotland there are about 8000 young people who have
ASD. Studies show about one in 100 young people have
ASD. ASD is more common in boys than girls.
4
Initial concerns
How will I find out if my child might have autism
spectrum disorder (ASD)?
As a parent or carer, you may be able to see for yourself
that your child has a problem with their development.
Sometimes your child’s difficulties in communicating with
other children may only become clear once your child
starts nursery or school. Concerns which other people
such as nursery staff or teachers have are also important.
It is important that health professionals respond if you
are concerned. You should expect them to discuss these
concerns with you.
The signs of ASD show themselves in different ways at
different ages. We have set out this information in the tables
on pages 5-9. This information may seem complicated but
it is important that you know about these signs.
You can ask any member of your child’s health-care team or
other professional to help you understand the information
in these tables. Not all children and young people with
ASD will show all of these signs. Also, it is important to
remember that if your child has some of these signs, they
may have other conditions instead of ASD.
5
Signs of possible ASD in pre-school children
Your child may:
yynot speak as well as would be expected for a child of their age,
or may not speak at all;
yynot appear to notice other people around them;
yynot respond to other people’s facial expressions or feelings;
yyhave little or no imagination or not pretend when playing;
yynot be interested in other children or play with them;
yynot take turns when playing;
yynot share enjoyment or happiness;
yyhave problems with non-verbal communication (for example,
eye contact, facial expressions);
yynot point at objects to get someone else to look at them;
yyhave problems looking to see where another person is looking
(known as ‘gaze monitoring’);
yynot start activities or play;
yyuse unusual repetitive hand and finger movements; or
yy react, or not react at all, to particular sounds or sights.
6
Signs of possible ASD in school-aged children
Communication problems
Your child may:
yyhave had unusual language development when they were
younger (used language which is different to that used by other
children their age);
yy sound unusual when they speak;
yy repeat words or phrases which they have heard rather than
responding to them;
yy refer to themselves as ‘you’, ‘she’ or ‘he’ after the age of three;
yyuse unusual words for their age; or
yyuse only limited language or talk freely only about things they
are interested in.
Social difficulties
Your child may:
yynot be interested in playing with other children;
yy try inappropriately to join in with other children’s play (for
example, your child may seem aggressive);
yybehave in a way which other people find difficult to understand
(for example, they may criticise teachers or not do as they are
told);
yybe easily overwhelmed by being around other people;
yynot relate normally to adults (for example, they may be too
intense or not have any relationship at all); or
yynot like people coming into their personal space or being
hurried.
7
Signs of possible ASD in school-aged children
Difficulties with interest, activities and behaviours
Your child may:
yy struggle to take part in pretend play with other children or play
in which they need to co-operate and take turns;
yyhave difficulties in large open spaces (for example, they may stay
round the edge of the playground); or
yyfind it difficult to cope with changes or situations that aren’t
routine, even ones that other children enjoy (for example, school
trips or teachers being away).
Other factors
Your child may have:
yyunusual skills (for example, have a very good memory or be
gifted in maths or music); or
yynot like the sound, taste, smell or touch of certain things.
8
Signs of possible ASD in teenagers
General
Your child may:
yy show differences between their ability at school and their
intelligence in social situations (for example, they may have
difficulties with school breaks or work breaks, but not with the
lessons or work);
yynot be ‘streetwise’ (in other words, have the skills and
knowledge needed to deal with modern life); or
yynot be as independent as people the same age as them.
Language, social skills and communication
Your child may:
yyhave problems with communication, even if they know a lot of
words and use grammar in the normal way – for example,
they may be quiet, talk at other people rather than have a twoway
conversation, or may provide too much information on
things they are especially interested in;
yynot be able to change the way they communicate in different
social situations (for example, they may sound more adult than
other people their age, or be overfamiliar with adults);
yynot understand sarcasm (when someone is making fun of
them); or
yymake eye contact, gestures and facial expressions at unusual
times.
9
Signs of possible ASD in teenagers
Social difficulties
Your child may:
yyfind it easier to make friends with adults or younger children,
and struggle more with their own age group;
yynot share the same attitudes or interests as other people of the
same age; or
yyfind it hard having someone get physically close to them or may
not know how close they should get to someone else.
Thinking and behaviour
Your child may:
yyprefer very particular interests or hobbies, or may enjoy
collecting, numbering or listing things;
yyhave a strong liking for familiar routines, or may have repetitive
behaviour; or
yy show difficulty in using their imagination (for example, in
writing or planning ahead).
10
Assessment and diagnosis
What should happen if my child has possible signs of
ASD?
If health professionals have concerns that your child may
have ASD, they should refer your child to a team of specialists
(see below) for an assessment. If a health professional is
considering referring your child for an assessment, they
should discuss this with you and organise support for you
and your child while you wait to go and see the specialists.
The tables on pages 27-30 tell you what information and
support you should receive.
What happens at a specialist assessment?
A specialist assessment will usually be carried out by
different professionals from health services (known as a
multi-disciplinary team), or even a ‘multi-agency team’
including professionals from outside the health service (for
example, from education and social work).
The assessment should involve:
hhfinding out about any problems your child is having,
how they have developed, and about the family
situation (known as ‘history-taking’);
hhseeing how your child behaves, plays or does tasks
while at the clinic (known as ‘direct observation’); and
hhgetting information about how your child behaves in
other situations outside the clinic.
11
History-taking will include:
hhasking about any problems your child is having now;
hh looking into your child’s development from when they
were born to the present time;
hhasking if members of your family have had any speech
and language difficulties, mental-health disorders,
learning disabilities or epilepsy; and
hhasking about any changes in the family (such as divorce
or a family member dying) which may be affecting your
child’s behaviour.
When asking about your child’s history, the specialists may
sometimes use a special approach (for example, the ADIR,
3di or DISCO). These are interviews that help specialists
to be consistent when asking about important issues
connected with ASD. The specialists involved in your child’s
assessment can tell you about these kinds of parent and
carer interviews.
It is also important for the specialists to observe your child.
They will either observe your child playing or doing tasks,
or interview them in the clinic. Sometimes the specialist
team will use a specific instrument – for example, the
Autism Diagnostic Observational Schedule (ADOS) or the
Childhood Autism Rating Scale (CARS). Again, these help
the specialists to make consistent observations about
children.
12
The specialist team will also want to gather information
about how your child gets on in their day-to-day life. They
will do this by contacting other people who can provide
relevant information (for example, your child’s teacher or
social worker).
Sometimes the specialist team will ask for specific reports
(for example, from your child’s school or from an educational
psychologist). This may mean carrying out other assessments.
For example, an educational psychologist can observe your
child at school. They can identify any particular strengths or
difficulties your child has with their performance in the class,
or how they act in social situations in the more unstructured
parts of the school day (for example, playtime).
The specialists may also consider assessing your child’s
mental-health needs if this is appropriate.
The assessment process will let the specialist team decide
whether your child has ASD.
Understanding your child’s profile
Children and young people with ASD have different strengths
and weaknesses and all have communication problems.
These can range from speaking very little to having subtle
problems in communication (for example, not being able
to understand sarcasm). When your child is being assessed
for ASD, their speech, language and communication skills
should also be assessed. This will involve observing your
child both in the clinic and at nursery or school. This will
help the health-care staff decide what type of approach
should be taken to help your child.
13
Also, children and young people with ASD may have a
range of skills or problems with:
hh intelligence;
hheveryday tasks; and
hhpsychological skills.
Health-care professionals should also consider assessing
these to help them decide on the best possible ways to
help your child.
If the health-care professionals involved with your child’s
care think it would help, they may ask an occupational
therapist or physiotherapist to assess your child.
The specialists should discuss the findings of their
assessment with you, and your child, when appropriate.
14
They should explain these to you and answer any questions
you may have.
Will the doctor be able to find out what causes my
child’s ASD?
There are many different known causes of ASD, but for
many children and young people a cause is not found.
Your doctor may suggest some investigations to try and
find the cause of your child’s ASD.
In some families who have a child with autism, there is a
higher risk that any brothers and sisters will also have the
condition. There is interest in other possible causes of ASD,
but at the moment there is not enough research evidence
to justify investigating these factors in clinical practice.
Does having an ASD make my child more vulnerable
to other problems?
Some other problems are more common in children with
ASD, including:
hhmental-health problems (particularly anxiety and
depression);
hhattention deficit and hyperactivity disorder (ADHD);
hhunusual behaviour when separated from or reunited
with people who provide care (known as ‘insecure
attachments’);
hhsleep problems; and
hhdifficulties with movement (for example, clumsiness
and tics).
15
Children and young people with ASD may also be more
likely to have:
hhepilepsy;
hhsight problems; and
hhhearing problems.
Your child’s health-care professionals should regularly check
your child for signs of these conditions. If they suspect that
your child may be affected, they should make sure that
these problems are accurately identified and managed.
It is also important to remember that your child may have
the same medical problems or emotional difficulties as
other children or young people without ASD, and they
should receive appropriate medical care for these.
Could my child’s condition change?
All children with ASD change as they grow up. In some
cases, your child’s ASD may get worse or improve (with or
without being treated or managed). There is some evidence
that the outlook may be better in children with ASD who
do not have a learning disability.
Some children in their early years lose skills in
communication and how they behave around other
people. This does not necessarily mean that they will
behave differently in later childhood to children who are
not affected in this way.
16
What can help?
When your child is diagnosed with ASD, you should expect
to be able to discuss different interventions (approaches) and
treatments for ASD with your doctor and other professionals.
It is also important to remember that your child has a right
to benefit from their education and wider life experiences.
The professionals should start interventions with your child
as soon as they identify concerns. Everybody working with
your child needs to promote and develop your child’s skills.
They will also need to consider adapting the environment
to help with your child’s difficulties.
This guideline is looking at health-service interventions but
educational support is also very important. The support
given to your child and wider family through other agencies
such as social services and the voluntary sector is important
too.
We use the term ‘interventions’ to acknowledge that, at
the time of writing, ASD cannot be cured. Although there
is no treatment to cure ASD, there is good evidence to
show that there are benefits to the many interventions that
can be included in your child’s care.
17
Education, skills and training for parents
Some programmes take the form of a type of education
for you as the child’s parent or carer. These programmes
(known as ‘parent mediated intervention programmes’)
can teach you skills to help your child’s development and
communication, and should be considered as an option if
your child is affected by ASD.
Help with early communication skills
Your child should be offered support for early communication
skills. This support might include visual approaches such as
pictures, and interventions to help your child communicate
in social situations. Behavioural interventions can be
considered to help a wide range of behaviour in children
and young people with ASD (for example, sleep problems).
18
However, you and the health-care professionals working
with your child need to understand that some behaviour
only takes place because your child is using it to make up
for their lack of skills, such as a problem communicating.
There is no evidence that behavioural programmes will
result in a child having normal communication skills in the
future.
Some interventions, such as auditory integration training
and facilitated communication (see the list of terms), have
no proven benefits and should not be used with your
child.
Other treatments such as occupational therapy may help
by adapting your child’s environments and helping them
with day-to-day activities and routines.
ASD affects children in different ways and it is important
to remember that what works for other children might not
work for your child. Professionals will talk with you and
your child to decide on the best treatment based on your
child’s individual needs.
19
Are special diets helpful?
There continues to be very active research into the
role of some interventions, such as diet and nutritional
supplements for children and young people with ASD. The
research has not shown that there are definite benefits in
these interventions, and so your doctor cannot prescribe
nutritional supplements to treat ASD symptoms. If your
child has gastrointestinal (tummy) symptoms (for example,
constipation and diarrhoea), they should be treated the
same way as they would be for a child who does not have
ASD.
Some children with ASD are very choosy about food and
your doctor may need to refer them to a dietitian for advice
about whether or not your child is getting enough of the
right kinds of nourishment when they only eat a limited
diet.
Are there any medicines that can help?
Medication (drug treatment) has not been shown to help
the main problems of ASD. Your child should not take
medication on its own to help with ASD – it should be part
of their overall care.
Medication can be useful for some of the symptoms or
difficulties your child may have (for example, ADHD or very
aggressive behaviour). Medication can help in the short
term but there is currently no information to show that it
helps in the long term.
20
Your child may also have epilepsy or other medical problems
and may need medication for those. This guideline does
not cover this but you can read more about how epilepsy is
treated in our patient guideline on epilepsy in children and
young people – see page 34 for details.
Before considering medication, health-care professionals
should assess your child’s surroundings (at school and
home) and daily routines (for example, their sleep, meals
and activities). Changing some of these may help your
child. The health-care professionals should also talk to
you and your child about the risks and benefits of taking
medication. Medication can be used along with other kinds
of treatment, and sometimes they may work together to
be more effective.
Your child should only be given medication by health-care
staff who have been trained and can get help or advice if
they need it. If your child is trying any medication, there
should be a plan about how long to try it and how you will
decide if it helps.
Coping with aggression, tantrums or self-harming
If your child behaves very aggressively, has tantrums or
harms themselves (for example, by banging their head),
a treatment called risperidone may help treat this in the
short term. If your child is taking this medicine, healthcare
professionals should monitor your child’s weight as
risperidone can sometimes cause children and young
people to put on weight.
21
Coping with sleep problems
If your child still has problems sleeping despite receiving
treatment, health-care staff may consider prescribing
melatonin. Melatonin is used to treat sleep problems in
children and young people, including children and young
people with ASD.
Before giving your child melatonin, you should be asked to
keep a diary of your child’s sleep pattern (in other words,
what time they go to sleep and what time they wake up).
Once your child starts to take this medicine, the sleep diary
can show you if the medicine has helped. When your child
starts to take melatonin, you should continue to keep a
sleep diary and they should continue with any bedtime and
waking-up routine.
22
Coping with ASD and ADHD
Children and young people with ASD and ADHD may
benefit from a treatment called methylphenidate. It may
help improve your child’s attention and concentration, and
reduce how overactive they are. Your child will be able to
try a test dose to check if they have any side effects. Side
effects of methylphenidate should be carefully monitored.
They can include:
hh reduced appetite;
hh feeling irritable;
hhsleep problems; and
hhemotional outbursts.
Side effects from methylphenidate do not seem to be
worse in children with ASD than in children who do not
have ASD.
Secretin
Secretin does not help ASD.
Other medicines
Depending on your child’s individual difficulties and other
medical problems, your doctor may consider using other
medicines.
23
Services
Will people involved in my child’s care be trained in
ASD?
It is important that everyone who is working with your child
has the knowledge and skills to be able to deal with ASD.
For example, teachers should be able to include a child with
ASD in their classroom. Local authorities and NHS boards
should make sure that staff are suitably trained to work
with children who have ASD.
Will I receive information and training?
It is important that you and your child receive clear and
accurate written and verbal information about ASD. You
should be given a report of the results of the assessments
your child has had and the final diagnosis. If you do not
understand or need things explained, do not be afraid to
ask.
Caring for a child with ASD can be stressful for you and your
family. To help you cope with this, you should be offered
education and the chance to develop skills to help your
child. Having a good network of social support can also
help you to cope. Health-care professionals will ask you
about this and will consider helping you get some extra
support if you need it. You may find it useful to be put in
touch with voluntary groups who can offer you advice and
give you the chance to meet other people who are going
through a similar experience. We have listed some of these
organisations on pages 31-32.
24
What happens when my child moves from one
service to another?
What your child needs will change as they get older. There
will be times when your child has to move between services
(for example, from childhood services to adult services). This
may present you and your child with new challenges and
opportunities. To make these changes as easy as possible,
you and the services you use should plan ahead to make
sure new support is in place when your child moves. You
should also be able to contact social workers during the
move between services.
In Scotland, your child will be allowed to make decisions
about their own health care once they are judged able to
do this. If they are not able to make their own decisions,
you have responsibility for them until they are 16 and so can
make this decision for them. However, this responsibility
ends when your child reaches 16.
If you feel that you should still be involved in decisions about
your child’s treatment after that, you can do so by getting
permission under the Adults with Incapacity (Scotland)
Act 2000. You can find out more on this law from www.
scotland.gov.uk.
25
Information and support
What information will my family get?
Living with ASD can be confusing and frustrating. Many
young people with ASD feel better once they know that
ASD affects them in particular ways. Children and young
people who have ASD may experience bullying at school
from other children who may not understand the condition.
It is important for young people with ASD to know that
they are not ‘mad’ or ‘stupid’. It can help if you talk to your
child about their ASD and encourage them to learn about
it. For example, you could encourage your child to read
the separate booklet we have written for young people, or
other books about ASD. You can find a list of books which
may help your child on pages 33-38.
When you care for your child, it can help if you understand
the condition yourself. Health-care staff should encourage
you and your child to learn about ASD and find out about
the interventions used to help children with ASD. It is
important to understand that your child may:
hhneed some space;
hhget confused;
hh lose their patience;
hhfind it hard to concentrate; and
hhneed a quiet place to go.
26
As well as discussing your child’s ASD with you, professionals
should also give you and your family good-quality
information. You can take this home and use it in your own
time to help you understand your child’s condition. You
should also be encouraged to ask questions at any time
when discussing your child’s ASD.
The tables on pages 27-30 explain the information and
support you and your child should expect to receive at the
different assessment and intervention stages.
Checklist for what services & information you should receive
Before your child is assessed
The initial professional concerned (for example, a health visitor,
teacher or GP) should:
yy explain to you and your child that their behaviour shows a
number of ‘clinical clues’ that may suggest your child has
ASD or a difficulty communicating with or being around other
people;
yy talk to you (and your child, if appropriate) about the
advantages and disadvantages of your child being assessed and
check that they have your permission to organise this; and
yy ask you about any other information which might show that
your child has other conditions (for example, ADHD,
depression) or allow the professional to make a different
diagnosis (for example, a specific language difficulty).
The specialists you are referred to should:
yy make sure you and your child receive information about what
will happen now (the information should include the likely
timescale of any pre-assessment and assessment stages, and
who will be involved);
yy consider giving you copies of any correspondence they have
sent to and received from professional colleagues about the
assessments;
yy tell you that you are welcome to bring someone else with you if
you want to; and
yy explain that, if any part of the assessment is to be recorded on
video, the team will get written permission from you and your
child (if appropriate) to keep the recording.
27
Checklist for what services & information you should receive
At the assessment
The specialists should:
yy check you and your child understand the reasons for your
child being assessed, and how far you agree with the concerns
of the professional who referred you;
yy explain the assessment and agree with you and your child how
these will be organised and which colleagues will be involved;
and
yy repeat their explanations and change their arrangements if
necessary.
At any feedback appointments
The specialists should:
yy allow enough time for them to explain the findings and
discuss them with you (they should consider that you and your
child may be upset, and meet your needs separately);
yy find out what your child and your family understand about
the diagnosis, and add information as appropriate – for example,
if your child has been diagnosed with ASD, a member of the
team should explain the three areas of difficulty (see page 3).
yy based on their current knowledge, offer basic information
about:
— the cause of your child’s ASD;
— what interventions should be used;
— how ASD will affect your child in the future;
— any investigations the specialists will carry out; and
— the next steps to take for a multi-agency team to provide
appropriate support;
28
Checklist for what services & information you should receive
yy provide information about what written feedback will be
made available, and check with you and your child (as
appropriate) how it should be made available to relevant
colleagues;
yy if any part of the assessment has been recorded on video, get
written permission from you and your child (if appropriate) to
keep the recording;
yy if your child is considered unable to have the outcome of
the assessment explained to them at the feedback appointment,
discuss with you how and when to do this; and
yy in cases where a definite diagnosis cannot be made, discuss
with you how and when to best review or repeat the
assessment, or the options for another specialist assessment to
take place.
Interventions (after ASD has been diagnosed)
Multi-agency and multi-disciplinary teams should:
yy involve relevant colleagues from other organisations
(education, social work, voluntary sector, careers advisors,
and so on);
yy work with you to tailor the interventions to meet your and your
child’s needs;
yy provide more information if necessary (for example, about the
three areas of difficulty or any other medical problems);
yy consider putting specific interventions in place, including for any
other medical problems which may have been diagnosed;
yy discuss possible educational approaches with you and your child
(as appropriate), including extra support for learning;
yy have arrangements in place for consulting and sharing
information with education services;
29
Checklist for what services & information you should receive
yy discuss respite care (giving you a break from caring), social work,
and how brothers, sisters and the wider family can provide
support;
yy provide information about :
— any benefits you or your child may be entitled to;
— voluntary or community support;
— available opportunities for being trained to deal with
ASD; and
— other sources of information; and
yy organise for your family to have a named contact for
ongoing help.
30
Where can I find out more?
National organisations working with ASD
The Scottish Society for Autism
Hilton House
Alloa Business Park
Whins Road
Alloa
FK10 3SA
Phone: 01259 720 044
E-mail: autism@autism-in-scotland.org.uk
Website: www.autism-in-scotland.org.uk
Provides information, advice and support to families of
children and young people with ASD.
National Autistic Society – Scotland
Central Chambers
109 Hope Street
Glasgow
G2 6LL
Phone: 0141 221 8090
E-mail: autismhelpline@nas.org.uk
Website: www.autism.org.uk
Provides information, advice and support to families of
children and young people with ASD.
31
NHS Education for Scotland (NES)
NES has an information booklet for parents and carers
whose children have been recently diagnosed with ASD.
You can ask for a copy of this booklet from the Scottish
Autism Network by phoning 0141 950 3072 or by emailing
scottishautismnetwork@strath.ac.uk.
NES, with the University of Birmingham, has also
developed a learning resource about ASD for primarycare
professionals, including GPs. This includes a website
(www.nes.scot.nhs.uk/asd), where leaflets can be
downloaded.
Contact a Family – Scotland
Craigmillar Social Enterprise and Arts Centre
11/9 Harewood Road
Edinburgh
EH16 4NT
Phone: 0131 659 2930
E-mail: scotland.office@cafamily.org.uk
Website: www.cafamily.org.uk/scotland/index.html
Contact a Family is a charity which provides support,
information and advice to families of children and young
people with a disability or health condition.
32
Useful publications
You can buy any of the following books from bookshops.
You may also be able to borrow them from your local
library.
A mind apart: understanding children with autism and
Asperger’s syndrome
P Szatmari, Guilford Press (2004)
Explaining the enigma
U Frith, Blackwell Publishing (2003)
People with autism behaving badly: helping people with
ASD move on from behavioural and emotional challenges
J Clements, Jessica Kingsley Publishers (2005)
Sensory perceptual issues in autism and Asperger’s
syndrome
O Bogdashina, Jessica Kingsley Publishers (2003)
33
Leaflets
Autistic spectrum disorders: good practice guidance
Department of Education and Skills, DfES Publications
Free to download from
www.teachernet.gov.uk/wholeschool/sen/asds
Improving Scottish Education: education for pupils with
Autism Spectrum Disorders
HM Inspectorate for Education (2006)
Free to download from www.hmie.gov.uk/documents/
publication/epasd.pdf. You can also ask for a free paper
copy by phoning 01506 600 200.
For patients: epilepsy in children and young people
Scottish Intercollegiate Guidelines Network (2007)
Free to download from www.sign.ac.uk/pdf/pat81.pdf.
You can also ask for a free paper copy by phoning
0131 623 4720.
For young people: autism spectrum disorders
Scottish Intercollegiate Guidelines Network (2007)
Free to download from www.sign.ac.uk/pdf/pat98.pdf
You can also ask for a free paper copy by phoning
0131 623 4720.
34
For parents of younger children
You can buy any of the following books from bookshops.
You may also be able to borrow them from your local
library.
Autism: how to help your young child
Leicestershire County Council and Fosse Health Trust
(1998)
Autism in the early years: a practical guide
V Cumine, J Leach and G Stevenson
David Fulton Publishers (2000)
Sleep better! A guide to improving sleep for children with
special needs
VM Durand, Jessica Kingsley Publishers (1998)
Toilet training for individuals with autism and related
disorders: a comprehensive guide for parents and teachers
M Wheeler, Jessica Kingsley Publishers (1999)
Can’t eat, won’t eat; dietary difficulties and autistic
spectrum disorders
B Legge, Jessica Kingsley Publishers (2001)
For teenagers
For young people: Autism Spectrum Disorders
Scottish Intercollegiate Guidelines Network (SIGN) (2007)
Free to download from www.sign.ac.uk/pdf/pat98.pdf.
You can also ask for a free paper copy by phoning
0131 718 5090.
35
Books for brothers and sisters of children with ASD
You can buy any of the following books from bookshops.
You may also be able to borrow them from your local
library.
Everybody is different. A book for young people who
have brothers and sisters with autism
F Bleach, The National Autistic Society (2001)
Can I tell you about Asperger syndrome?
J Welton, Jessica Kingsley Publishers (2003)
Personal accounts (autism)
You can buy any of the following books from bookshops.
You may also be able to borrow them from your local
library.
George and Sam
C Moore, Penguin Publishers (2004)
Through the eyes of aliens. A book about autistic people
JL O’Neil, Jessica Kingsley Publishers (1999)
Emergence labeled autistic
T Grandin, Warner Books, Arena Press (1986)
For parents of older children and teenagers
You can buy any of the following books from bookshops.
You may also be able to borrow them from your local
library.
36
Understanding and working with the spectrum of autism
W Lawson, Jessica Kingsley Publishers (2001)
The complete guide to Asperger’s Syndrome
T Atwood, Jessica Kingsley Publishers (2006)
Asperger syndrome. A practical guide for teachers
V Cumine, J Leach and G Stevenson
David Fulton Publishers (1998)
Asperger syndrome and adolescence. Helping preteens
and teens get ready for the real world
T Bolick, Fair Winds Press (2004)
A parent’s guide to Asperger syndrome and high
functioning autism
Ozonoff, Dawson and McPartland, Guilford Press (2002)
Autism and Asperger Syndrome: preparing for adulthood
(2nd edition)
Patricia Howlin, Routledge (2004)
Transitions
You can buy any of the following books from bookshops.
You may also be able to borrow them from your local
library.
Transition toolkit. A framework for managing change
and successful transition planning for children and young
people with ASD
37
K Broderick and T Mason-Williams
BILD publications (2005)
Succeeding in college with Asperger syndrome. A student
guide
J Harpur, M Lawlor and M Fitzgerald
Jessica Kingsley Publishers (2004)
Personal accounts (Asperger’s syndrome)
You can buy any of the following books from bookshops.
You may also be able to borrow them from your local
library.
Martian in the playground
C Sainsbury, Lucky Duck Publishing (2000)
Pretending to be normal
L Holliday-Willey, Jessica Kingsley Publishers (1999)
Eating an artichoke
E Fling, Jessica Kingsley Publishing (2000)
Freaks, Geeks and Asperger Syndrome. A user guide to
adolescence
L Jackson, Jessica Kingsley Publishers (2002)
38
Leaflets for professionals which you may find useful
Supporting your patient: what GPS and primary care
practitioners need to know
NHS Scotland (2006)
Free to download from www.nes.scot.nhs.uk/asd/
documents/Flyer1270606.pdf. You can also ask for a free
hard copy by phoning 0131 220 8050.
Supporting the family: what GPS and primary care
practitioners need to know
NHS Scotland (2006)
Free to download from www.nes.scot.nhs.uk/asd/
documents/Flyer2270606.pdf. You can also ask for a free
hard copy by phoning 0131 220 8050.
Has my next patient got an autism spectrum disorder?
NHS Scotland (2006)
Free to download from www.nes.scot.nhs.uk/asd/
documents/Flyer3270606.pdf. You can also ask for a free
hard copy by phoning 0131 220 8050.
Autism Spectrum Disorders and additional conditions:
what GPS and primary care practitioners need to know
NHS Scotland (2006)
Free to download from www.nes.scot.nhs.uk/asd/
documents/Flyer4270606.pdf. You can also ask for a free
hard copy by phoning 0131 220 8050.
39
Websites
British Dietetic Association
www.bda.uk.com
Provides a range of fact sheets about diet, including diet
and autism spectrum disorders.
Careers Scotland
www.careers-scotland.org.uk
Provides services, information and support for people of
all ages.
Do to learn
www.dotolearn.com
Excellent practical educational activities, games and
organisation charts such as calendars.
Enquire
www.enquire.org.uk
Offers a flexible outreach and training service aimed at
parents, carers and people who are involved in educating
children and young people who need extra support for
learning.
National Autistic Society (NAS)
www.autism.org.uk
The NAS website is detailed and easy to use. Includes
information on parent training and support programmes,
EarlyBird and Help!
40
Asperger and ASD UK On-line Forum
www.asd-forum.org.uk
A well supported, well organised internet support group
with e-mail discussions and bulletin boards for sharing
information.
Department for Work and Pensions
www.dwp.gov.uk/lifeevent/discare
Information on benefits and Disability Living Allowance.
Skill Scotland
www.skill.org.uk
An information and advice service for young people and
adults with any kind of disability in post-16 education
training and employment.
Sleep Scotland
www.sleepscotland.org
A charity providing support to families of children and
young people with extra support needs and severe sleep
problems.
41
List of useful terms
Attention deficit hyperactivity disorder (ADHD) – a
condition in which a child or young person has consistently
high and inappropriate levels of activity, acts impulsively
and is unable to pay attention for long periods of time.
Auditory integration training – an approach to help
hearing disorders, such as hearing loss or distorted
hearing.
Autism spectrum disorders (ASD) – a range of conditions
including autism, atypical autism and Asperger’s syndrome
Asperger’s syndrome – a form of autism where a person
has all three main areas of difficulty (see page 3) but does
not have learning difficulties or delayed speech.
Atypical autism – a form of autism where a person does
not have all three main areas of difficulty (see page 3). The
condition may not be noticed until the person is at least
three years old.
Autism – a lifelong developmental disability affecting
behaviour and social and communication skills.
Behavioural disorders – behaviour patterns that do not
fit in with normal development.
Clinician – someone who is trained and working as a
health-care professional (for example, a doctor)
42
Facilitated communication – a method of communication
in which a child’s hand is supported by someone else to
type out messages on a keyboard with letters, words or
pictures.
General practitioner (GP) – a doctor who provides general
medical treatment.
Insecure attachment – a pattern of behaviour, shown
during a specific test used for children aged between 12
and 21 months, which involves a child being separated
from, and then reunited with, a person who provides care
(also known as the ‘Strange situation’ test). An ‘insecure
attachment’ is when the child shows either less distress
when separated and avoids the person when they are
reunited, or more distress when separated and is difficult
to comfort when reunited with the person.
Intensive behavioural programmes – techniques which
are based on behaviour theory, and can be used to increase
behaviour which is wanted, or to reduce behaviour which
is unwanted. Behaviour theory looks at what people
actually do (their behaviour) and identifies types of things
to increase or reduce it.
Intervention – an approach which will help your child but
will not cure them.
Melatonin – a drug used to treat sleep problems in children
and young people, including some with ASD.
Methylphenidate – a drug used to help reduce problems
with attention, concentration and overactivity.
43
Non-verbal – communication through the use of facial
expressions, gestures and body movements.
Occupational therapist – a professional who is trained to
help people manage their daily activities.
Paediatrician – a doctor who specialises in treating
children.
Physiotherapist – a health-care professional who helps
with physical problems.
Psychiatrist – a medical doctor who specialises in diagnosing
and treating problems people have with thinking, emotion
and behaviour.
Psychologist – a professional who specialises in the study
of the human mind and behaviour.
Risperidone – a drug used to help people with ASD to
control their aggression, tantrums or self-harm, and to
treat other conditions.
Secretin – a gastrointestinal hormone.
Social worker – a professional who works with children and
families to help with them cope with day-to-day living.
Speech and language therapist – a professional who
works with children and young people who have problems
with communication.
Tics – a sudden and uncontrolled small movement or
noise.
44
Diagnostic tools
3di (developmental, dimensional and diagnostic
interview) – a history-taking instrument used by
clinicians.
ADI-R (autism diagnostic interview – revised) – a historytaking
instrument used by clinicians.
CARS (childhood autism rating scale) – a scale used by
clinicians when observing your child to help them make a
diagnosis.
DISCO – a history-taking instrument used by clinicians.
45
Space for your notes
46
Space for your notes
47
Space for your notes
48
What is SIGN?
The Scottish Intercollegiate Guidelines Network (SIGN)
writes guidelines which give advice to doctors, nurses,
surgeons, physiotherapists, dentists, occupational therapists
and patients about the best treatments that are available.
We write these guidelines by working with doctors, nurses
and other NHS staff and with patients, carers and members
of the public. The guidelines are based on the most up-todate
evidence.
Other formats
If you would like a copy of this booklet in another language
or format (such as large print), please phone Karen Graham,
Patient Involvement Officer, on 0131 623 4740, or e-mail
her at karen.graham2@nhs.net.
49
This booklet is based on a clinical guideline issued to all NHS staff.
The Scottish Intercollegiate Guidelines Network (SIGN), developed this 2007 guideline. It is based on the most up-to-date published evidence.
You can download the full clinical guideline from our website at www.sign.ac.uk/pdf/sign98.pdf
A short version is also available at www.sign.ac.uk/pdf/qrg98.pdf
Scottish Intercollegiate Guidelines Network
Gyle Square, 1 South Gyle Crescent
Edinburgh EH12 9EB
Tel. 0131 623 4720
Website: www.sign.ac.uk