Autism Spectrum Disorder (ASD) - An advice pack for parents and carers - East Kent Hospitals University NHS ...
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Autism Spectrum
Disorder (ASD)
An advice pack for parents and carers
This leaflet has been produced with and for patients
If you would like this information in another language,
audio, Braille, Easy Read, or large print please ask a
member of staff.
Any complaints, comments, concerns, or compliments please
speak to your doctor or nurse, or contact the Patient Advice and
Liaison Service (PALS) on 01227 783145 or 01227 864314, or email
ekh-tr.pals@nhs.net
Further patient leaflets are available via the East Kent Hospitals
web site www.ekhuft.nhs.uk/patientinformation
Information produced by Child Health
Date: January 2019 Review date: May 2021 Web 333
Autism Spectrum Disorder (ASD) (January 2019)
Contents Page You have been given this leaflet because your child has been
diagnosed with autistic spectrum disorder, or ASD. The leaflet gives an
• What is ASD? 3 overview of ASD, how to look after yourself and siblings of your child
• Social interaction 4 with ASD, as well as listing further information and support groups in
• Communication 4 East Kent.
• Behaviour and imagination 5
This booklet will use the term ASD. However, you may also see it
• What causes ASD? 5 referred to as ASC, or autistic spectrum condition. These are the same.
Before 2013, ASD was divided into autism (lower functioning) and
• My child’s individual report 6 Asperger’s syndrome (higher functioning). Although these labels are
out of date, some people and information sources may still use them.
• What might help my child? 7
• How can I help support myself and my child? 8 What is ASD?
Autism Spectrum Disorder is described by the National Autistic
• How can I support my other children? 8 Society as “a lifelong developmental disability that affects how a person
communicates with, and relates to, other people and the world around
• Siblings’ Group 9 them”.
• Strengths 10 ASD is a spectrum disorder. Some people with ASD may need a
significant amount of support through their lives, others may be able to
• EarlyBird course 12 live relatively normal and functioning lives. It is important to remember
this when reading this booklet and the information about ASD in
• Cygnet course 13 general.
• How can I use visual resources to help my child? 14-17
• What support and information groups are in East Kent? 18-22
• Are there any books I can read? 23
• What next? 24
2 3 Autism Spectrum Disorder (ASD) (January 2019)
Challenges typical of people with ASD are social interaction difficulties, • Behaviour and imagination
communication difficulties, and differences in behaviour and Children who have ASD may show restricted, repetitive, and
imagination. stereotyped behaviour. They often prefer to play alone and often are
not interested in imaginative play. Rather, they may choose to
• Social interaction engage in repetitive behaviour, such as lining up their toys in an
This group of symptoms can be described as ‘difficulty order, instead of playing with them. They may choose to play the
understanding and getting along with people’. This can include same games repeatedly and these may be more geared to
behaviour such as: younger children.
- not making eye contact, or making less eye contact than expected Intense interests may develop in older children and adolescents,
- not wanting to be kissed or cuddled which may continue into adulthood.
- not wanting affection
- a difficulty in making friends
- not understanding social rules What causes ASD?
- ignoring or appearing insensitive to other people’s needs, thoughts, Nobody knows the exact cause of ASD. Evidence suggests that
and feelings genetic factors are involved, affecting the development of the brain.
- getting on better with adults than other children. However, it is certain that parenting does not cause ASD.
Although it is certainly possible that children with ASD are born into
• Communication families with no history of ASD, it does often run in families. Sometimes
Communication problems are often the first signs of ASD. These many members of the same family have a diagnosis of ASD, or many
communication problems usually affect both speech and family members can have traits associated with the autistic spectrum
understanding. Some children who are most severely affected by but not at a diagnosable level. Researchers found that identical twins
ASD may never learn to communicate, whereas others on the milder (who share the same genes) have a 70% overlap of ASD, suggesting a
end of the spectrum may have a problem understanding sarcasm strong genetic influence. It is possible that ASD is caused by the
and a literal understanding of sayings (for example ‘pull your socks combination of several hundreds of genes, rather than just a few.
up’, or ‘it’s raining cats and dogs’).
There are also external factors in the development of ASD. We know of
Some children with ASD have echolalia, which means they repeat other, non-genetic factors that may cause ASD. More research is
(or ‘echo’) a person’s words exactly. Children on the milder end of needed on this, but possible suggestions include birth weight,
the spectrum may not be slow to speak, however, their language difficulties in pregnancy and labour, blood and oxygen flow in the
may be formal and sound adult. womb. Parenting is not one of these factors.
4 5 Autism Spectrum Disorder (ASD) (January 2019)
My child’s individual report What might help my child?
After your child’s diagnosis, a report will be produced. This report will There is no cure for ASD. However, certain specialised treatments can
be split into two sections. The first section will be an overview of your have a positive impact on a child’s development and can help reduce
child’s developmental history and include evidence from your child’s difficult behaviour and negative emotions.
life. This will include many different aspects of your child’s life such as
school, sleep, and physical attributes. • Special education
Some children with ASD need special education. For some, this
The second section will focus on the Autism Diagnostic Observation may take the form of a special school. However, most children with
Schedule (ADOS) assessment undertaken with your child. This will ASD are based in a mainstream school, perhaps with some
highlight in detail your child’s strengths and difficulties. additional support.
What happens next with the report is up to you. With your consent the • Behavioural therapies
report can be shared with other professionals (including schools and These may help a family cope with any behavioural issues
therapists). This may help your child receive additional support, such associated with ASD. They can also help to teach those with higher
as an education, health, and care plan. functioning ASD to better deal with social situations. This can
include channelling behaviours into strengths and encouraging
them to see their strengths.
• Medicine
Sometimes medication can be used to help improve specific
symptoms. For example, to reduce obsessive, hyperactive, or
agitated behaviour. However, these may have side effects if used
for a long time.
6 7 Autism Spectrum Disorder (ASD) (January 2019)How can I support myself and my child? Siblings’ Group
Having a child diagnosed with ASD is different for everyone. Some In order to provide support for siblings of children with ASD, we run
people feel upset and surprised, others feel relieved that their child’s siblings’ groups at various times throughout the year across East Kent
difficulties have been identified and others feel frustrated and helpless. - these groups are run in Canterbury, Ashford, Dover, and Folkestone.
Whatever your reaction is, it is perfectly natural and nothing to be The siblings’ group is for siblings aged 7+ years old and consists of
ashamed of. It may be helpful to remember that your child is the same weekly 90 minute sessions, for four consecutive weeks. Groups usually
now as they were before their diagnosis. All that has changed is that have four to six children and include two or more staff members.
their difficulties have been identified. This identifying of difficulties early
will be helpful for your child and allows you to be equipped for the The group covers issues such as expressing feelings about having a
years ahead. sibling with ASD; sharing experiences of difficult times with siblings and
building coping skills; information about ASD; and enjoying brothers
It is important to look after yourself. Take time from your day just to and sisters.
focus on you. This could be as simple as going for a short walk or
reading a book. Look for a support network. Family and friends can The group aims to increase children’s understanding of their siblings’
provide invaluable help. There is no shame in asking for and accepting condition and also to enhance their coping skills. The group also offers
help. the opportunity to meet with other siblings and share experiences.
If you would like more information, or feel that your child would benefit
How can I support my other children? from joining the siblings’ group, contact the Psychological Services (ask
You may feel that your child with ASD takes a lot of your time and a member of staff for contact details).
attention. Siblings might feel this way too. When possible:
- make time for siblings
- do some activities with them separately
- allow siblings to have time to themselves, for example a sleepover
at a friend’s home
- allow siblings to bring their own friends home sometimes and enjoy
themselves without interruption
- listen to their worries, concerns, and the things that are important to
them
- listen to their ideas; older children in particular may have good ideas
about how best to manage certain situations. If they have a good
relationship with their brother or sister with ASD, they may be able to
ask them to do things that parents or carers cannot.
8 9 Autism Spectrum Disorder (ASD) (January 2019)Strengths Many people with ASD are talented and successful. Here are just a
People with ASD can have many strengths. They may have long handful of people who have (or in the case of historical figures, are
attention spans and work with things many people would not find believed to have had) ASD.
interesting. Some individuals on the milder end of the spectrum may
have successful careers, often in the sciences. They can have a good - Albert Einstein and Issac Newton, influential scientists (proposed
eye for detail, being very precise and accurate. They are often by Ioan James, Royal Society of Medicine, 2003)
particularly good at logic, as well as factual skills.
- Susan Boyle, singer (as quoted in the Guardian, 2013)
People with ASD may have similar traits and skills to each other,
however, they are just as individual as typically developing people. - Daryl Hannah, film actress (as quoted in the Guardian, 2015)
Each person with ASD has their own likes, their own dislikes, their own
strengths and weaknesses, and their own character and personality. - James Durbin, American Idol contestant (as quoted in Autism
Speaks, 2013)
“I see people with ASD as a bright thread in the rich tapestry of life.”
- Tony Attwood, ASD expert - Ladyhawke, singer (as quoted in the Independent, 2008)
“What would happen if the autism gene was eliminated from the gene - Danny Beath, award-winning landscape and wildlife photographer
pool? You would have a bunch of people standing around in a cave, (as quoted in Shropshire Star, 2013)
chatting and socializing and not getting anything done.”
- Temple Grandin, autism activist - Jessica-Jane Applegate, swimmer (as quoted in Great Yarmouth
Mercury, 2010)
“Autism, is part of my child, it’s not everything he is. My child is so
much more than a diagnosis.” - SL Coelho, author - Derek Paravicini, blind British musician (as quoted on BBC, 2011)
“I’m not damaged, I don’t need fixing. I’m just different. Embrace
different” - Tina J Richardson, social networker with ASD
“The positives outweigh the negatives.” - Tina J Richardson, social
networker with ASD.
“Autism - a different way of thinking.” - Tina J Richardson, social
networker with ASD
“If you’ve met one person with autism, you’ve met one person with
autism” - Stephen Shore, ASD expert with ASD
10 11 Autism Spectrum Disorder (ASD) (January 2019)EarlyBird course Cygnet course
At the point of diagnosis, the professional involved will have directed The Cygnet course is designed for the parents/carers of children with
you to the EarlyBird, if age appropriate. an ASD diagnosis who are of school age (5 to 18 years). If
appropriate, this may be something you could do now, but also may be
“Whilst there is no cure for autism, and no magic wand, EarlyBird is the something to consider attending in the future to help you navigate your
closest thing you could wish for.” - parent who has attended the way through your child’s adolescence.
EarlyBird is a three month training programme run by local Not all ages will be in the same session - families will be put with
professionals, with experience and understanding of ASD, who have other families who have similar-aged children so that the sessions are
been trained to deliver the programme by the National Autistic Society. tailored to their age. It consists of six weekly two and a half hour
sessions. Note that you can only attend the Cygnet course if you have
The programme is for families of a pre-school child with a diagnosis of not attended the EarlyBird programme.
ASD. The aims of this programme are to empower parents/carers, to
support families in the period between diagnosis and school entry, and The course is designed to help parents and carers’ understanding of
to establish good practice during the early years of child development. how their children see the world and what drives their behaviour. They
provide practical advice and strategies which can be used to help sup-
The EarlyBird programme is held in Thanet and Canterbury. port your child and manage behaviour. The course covers sensory is-
sues, communication, understanding behaviour, supporting behaviour,
• If you are interested in the course and within the Thanet area, and parental experiences. It is also a good way to meet other parents,
please contact: Laleham GAP school and ask for Sarah Cole, who may have very similar experiences to yourself.
Thanet Inclusion Support Service.
If you are interested in this course and are within the Canterbury and
• For Canterbury, please refer to the NAS EarlyBird Programme Coastal district, please talk to any professional involved in your child’s
leaflet, given at time of diagnosis. This is a self-referral process, and care and they will complete a referral - referrers include schools,
will involve you completing the Parental Referral Form on the back paediatricians, CAMHS workers, and EarlyHelp workers.
of this leaflet and returning to the address below. Your name will
then be placed on the waiting list and an invite will be sent to you. If you are interested and within the Thanet area, please email Claire
Grant, Admin Assistant at Foreland Fields School on email
Your EarlyBird team’s contact details for Canterbury are: ffiss@foreland.kent.sch.uk or phone 01843 268997.
Lisa Rigden and Ali Goodsell
ITACC, Children’s Assessment Centre,
Kent and Canterbury Hospital, Ethelbert Road
Canterbury CT13NG
Telephone: 01227 464316
Email: alison.g@st-nicholas.kent.sch.uk
12 13 Autism Spectrum Disorder (ASD) (January 2019)How can I use visual resources to help my child? • Social stories
Sometimes children with ASD become overloaded with too much Social stories are stories written for a particular child by a parent/
verbal information. One way of helping them is to write a visual carer or a professional who knows the child well. The story will be
timetable, social story, or comic strip conversation, which will include specific to an individual child and addresses a difficult situation that
visual images to help their understanding. they are either currently experiencing or need to prepare for (such
as encouraging them to use the toilet correctly or what will happen
• Visual timetables as they go through puberty).
These are timetables which have symbols and pictures alongside
words. This can reduce confusion. Pictures can help children with Rather than being a list of things for the child to do or not to do, the
ASD to make sense of a situation. Children can regularly refer to the social story communicates a message in an engaging manner using
visual timetable, so that they know what to expect. an appropriate level of visual support. It is important that the story
is based around the child (using, ‘I’ in the first person). This makes it
They can be used both for normal routines, such as morning clear that the story is about them – they do not have to draw
routine, or the school day, or for events which the child may be inferences about someone else’s behaviour.
unfamiliar with, such as a special day or trip out.
The story uses three different types of sentences.
- Descriptive sentences – fact based and accurate (Christmas day
is 25th December or everybody gets ill sometimes).
- Perspective sentences - what others might think, believe, or feel
(mummy and daddy know when it is time for me to go to bed or
some children believe in Father Christmas).
- Directive sentences - a response (or responses) for behaviour in a
particular situation. It is always positive and allows for mistakes
For example ‘try’ is used rather than ‘must’, to allow for mistakes (I
will try to cover my mouth when I cough or I might like to play
outside during lunchtime).
The story can then be read in a calm place, to prepare them for the
situation.
For more information and examples, visit
www.carolgraysocialstories.com/social-stories
14 15 Autism Spectrum Disorder (ASD) (January 2019)• Comic strip conversations
Comic strip conversations can help to increase social understanding
for those whose ASD is higher functioning. They are a visual
conversation which is represented using symbols, stick figure
drawings, and colour. By presenting this visually, some more
‘abstract’ aspects of conversation (for example, the feelings and
motivations of others) are made more ‘concrete’ and easier to
understand.
When writing a comic strip conversation, it is worth considering the
following:
• where is the child/young person?
• who else is there?
• what is the child doing?
• what happened?
• what did the child think?
• what did others do, say, and think?
More information can be found on the following web site
www.autism.org.uk/about/strategies/social-stories-comic-strips/com
ic-strip-conversations.aspx
16 17 Autism Spectrum Disorder (ASD) (January 2019)National support and information • Square Pegs Arts
The National Autistic Society (NAS) are the leading UK charity for
autistic people (including those with Asperger syndrome) and their What? Square Pegs Arts deliver a range of different projects and
families. They provide information, support, and pioneering services, groups, all aimed at children with learning disabilities, ASD, or social
and campaign for a better world for autistic people. communication difficulties.
NAS Autism Helpline: 0808 800 4104 Drama groups: weekly drama groups for children, young people,
Web: www.autism.org.uk/ and adults. These are held in Maidstone and Canterbury.
Singing group: monthly group for age 14+. This is held in
What support and information groups are in East Kent? Canterbury.
By making contact with these groups, you will be able to speak to
both parents/carers and professionals who have experience of ASD Accessible Film Club: monthly film screenings and social. Relaxed,
and who will therefore be able to discuss any concerns with you and fully accessible environment. Films are captioned and open to all,
provide support. especially those with ASD and learning disabilities. These are held
at the Gulbenkian Cinema, Canterbury.
• Information, Advice and Support Kent (formally Kent Parent
Partnership Service) Contact details: for information on the drama and singing groups
email assistant@squarepegsarts.com or phone Mia on 07415
What? Free, impartial and confidential advice for parents/carers of 128885. For Film Club information email Cherie@squarepegsarts.
children with special education needs, including ASD. com or phone the Gulbenkian Box Office on 01227 769075.
Where? Individual appointments can be made at locations suitable Web: www.squarepegsarts.com
to you. Telephone and email correspondence is also available.
When? Helpline is available Monday to Friday 9am – 5pm. Emails • SNAAP: Special Needs Advisory and Activities Project
will be replied to within a maximum of two working days.
What? SNAAP provides a number of services and activities for
Telephone: 03000 413000 children with disabilities, as well as having a focus on the family.
Email: iask@kent.gov.uk
Web: www.kent.gov.uk/iask Where? Windchimes, Reynolds Close, Herne Bay, Kent, CT6 6DS
When? There are a variety of services available at different times.
Telephone: 01227 367555
Email: cyp@snaap.org.uk
18 19 Autism Spectrum Disorder (ASD) (January 2019)• Independent Parental Special Education Advice (IPSEA) When? First Monday of every month from 9.30am to 11.30am (
except school holidays and bank holidays).
What? A national charity that provides free, expert advice to parents
of children with special educational needs. Contact details: email spotspectrum@talktalk.net (note there is
only one ‘s’ between spots and spectrum) or phone 07717 064944
Where? Online and via telephone. or 07788 670721
Web: www.ipsea.org.uk
• For Us Too
• Kent Autistic Trust (support group for parents and carers) What? For Us Too is a charity run by parents of children with
disabilities in Swale, Canterbury, and Thanet. Their mission is to
What? An opportunity for parents and carers to talk and listen to improve the lives of children with disabilities, young people and their
others with similar experiences. To exchange ideas and information families across East Kent.
and discuss concerns.
For Us Too work with parents to identify support needs and conduct
Where? Georges Turle House, 54 London Road, Canterbury, CT2 research for families to put them on the right track to get the
8JY. services and advice they need.
When? Meet on Mondays, 10am to 12pm, every two months (dates They support parents/carers of children and young people with a
for next meeting on website www.kentautistictrust.org/). disability to access information, offer support, signpost, and refer to
other services.
Contact: Jo Blamires Telephone: 01634 405168 or
email: jo@kentautistic.com They provide school holiday activities and subsidised family focused
events such as day trips to local attractions, exclusive access to soft
play venues, exclusive autism friendly cinema screenings, and
• SPOTS (Supporting People On The Spectrum) family fun days.
What? SPOTS is a support group run by parents/carers for families They also provide 1-2-1 family support work, workshops, and
of children and young people with ASD. The group is a way of training for parents and carers, and informal groups aimed at giving
meeting families who also have children/young people with ASD and parents/carers time to catch up with other parents/carers and share
for information sharing. advice and tips. As well as this, they run drop-in support groups
every two weeks (Thursdays in Margate and Fridays in Swale).
Where? Green Banks Centre, Westfield Road, Margate, CT9 5PA.
Where? Thanet (Green Banks Westfield Rd Margate CT9 5PA) and
Swale (Orchards, Atlee Way Sittingbourne ME10 2HE).
20 21 Autism Spectrum Disorder (ASD) (January 2019)• Contact details Thanet: 01843 446030 or email anna@4us2.org Are there any books I can read?
Swale: 01795 227171 or email lauren@4us2.org
For parents
For all other enquiries email info@4us2.org.uk • Freaks, Geeks and Asperger Syndrome: a User Guide to
Adolescence: by Luke Jackson
• A Curious Incident of the Dog in the Night-Time: by Mark Haddon
With a few carefully chosen specific exceptions, this booklet has only • It’s Raining Cats and Dogs: by Michael Barton
included charities and organisations that are specific to ASD. • Ten Things Every Child with Autism Wishes You Knew: by Ellen
However, SNAAP have a very useful and comprehensive 152 page Notbohn
directory of organisations and charities that may be able to provide • The Cradle of Thought: by Peter Hobso
support. This directory can be accessed by phoning 01227 367555 • Thinking in Pictures: by Temple Grandin
and they will post you a copy, or by using the following weblink
www.snaap.org.uk/east_kent_resource_directory.pdf For children
• All Cats have Asperger Syndrome: by Kathy Hoopmann
• The Superhero Brain by Christel Land
Books about managing emotions
• When My Worries Get Too Big: by Kari Dunn Buron
• Exploring Feelings: CBT to Manage Anxiety/Anger: by Tony Attwood
• The Incredible Five Point Scale: by Kari Dunn Buron
• The Incredible Years: by Carolyn Webster-Stratton
For siblings
• Everybody Is Different (Fiona Bleach)
• I’m a teenager get me out of here (Carolyn Brock)
These are just a few of the books available. For more books on
specific areas relating to ASD, browse the internet or visit the NAS
website for more publications and articles.
22 23 Autism Spectrum Disorder (ASD) (January 2019)What next? Notes
You are now either at the end of, or nearing the end of, your child’s Please use this space to write down any information you may want to
ASD diagnostic process. take away with you from your appointment, such as phone numbers,
details of courses, and names of books.
Today you will either have been made additional appointments for
further support or you will have been discharged. The clinical nurse
specialist will have discussed this with you and made sure you were
happy with the decision.
Twice a year, we run a one day workshop for parents/carers of
children with ASD. You will receive a letter with details about the day
and how to book a place or places. If there are any changes to your
contact details, please tell the child health department to make sure the
letter arrives to you.
However, ASD is a lifelong condition and sometimes you may want
additional support. To do this, contact your GP, who will be able to refer
you to the most appropriate service. This may be the children’s
assessment centre, or for older children with specific difficulties
alongside their diagnosis, it may be the Child and Young People
Service (chYPS), or another service entirely.
As children approach their teenage years, we recommend reviewing
information about ASD. All children change at this point and those with
ASD are no different. Adolescence will entail a number of different
challenges, but will also be a very rewarding stage of your child’s
growing up. We hope this leaflet helps your understanding
of your child’s diagnosis. We know that a
diagnosis of ASD can be challenging,
but with the right information and guidance,
the journey can be made easier.
Each child is unique and individual
and an ASD diagnosis does not change this.
24 25 Autism Spectrum Disorder (ASD) (January 2019)You can also read
