Page 1 Autism Spectrum Disorder/Condition Information for Families in South West Kent Tonbridge & Malling, Tunbridge Wells, Sevenoaks
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Autism Spectrum Disorder/Condition
Information for Families in
South West Kent Tonbridge & Malling, Tunbridge Wells, Sevenoaks
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Introduction Autism is a developmental condition which affects around 1 in 100 people. It is a lifelong condition that affects how a person communicates with and relates to other people, and how they experience the world around them. Autism is not an illness or disease and cannot be 'cured'. Often people feel being autistic is a fundamental aspect of their identity.
Children with autism have persistent difficulties with:
i. Social interactions and communication ii. Restricted and repetitive patterns of behaviour
These difficulties can impact their ability to function every day
Children with these difficulties are often said to have an Autism Spectrum Disorder (ASD). This is because there is a wide spectrum of ability among children with autism, ranging from children with severe needs to those with high ability.
All children with autism have complex needs and they and their families need help and support. There is no 'cure' for autism and therefore no medical ‘treatment’ as such exists but children can develop and learn with the assistance of individualised strategies and approaches.
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Assessment and Diagnosis Children may be referred for an assessment by their GP, health visitor, a therapist or other health or education professional.
Children are typically assessed in a Social Communication Diagnostic Assessment Clinic by a specialist Paediatrician and a Speech and Language Therapist who work in the West Kent Community Child Health Team.
Following a diagnosis being made, the paediatrician will liaise with other health professionals, as well as education and social services where necessary.
Contact details for the West Kent Community Child Health Team are:
Cornerstones
58 Tunnel Road
Royal Tunbridge Wells
Kent TN1 2BU
Tel: 0300 123 4084
Email: [email protected]
Specific information on ASD can be accessed via:
www.kentcht.nhs.uk/service/community-paediatrics/
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Support Following Diagnosis Multi-agency ‘Drop-in’ Sessions
These are regular termly sessions where you can meet professionals
and other families. Dates are given out following diagnosis,
alternatively contact:
i. Specialist Teaching and Learning Service Broomhill Bank Outreach Services Tel: 01892 502466
ii. Wendy Boorman ; Family Liaison Officer Kent Autistic Trust Tel: 01634 405168 Email: [email protected]
Children’s Social Services
The Young People’s Team or the Disabled Children’s Team can
provide advice and support including an individual assessment of
need which may lead to package of support for children with:
i. severe and profound learning difficulties ii. physical and sensory disabilities iii. a combination of disabilities
Tel: 03000 41 11 11 Email: [email protected] Website: www.kent.gov.uk/social-care-and-health/care-and-support/how-to-get-help
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Speech and Language Therapist Some children with ASD can have particular difficulties with language and communication. You may be referred for speech and language therapy and will be informed of this at your diagnosis assessment.
Additional Therapy Input Some children with ASD can have sensory processing difficulties. You may be referred to a sensory processing workshop and will be informed of this at your diagnosis assessment. This is a one session parent or carer only group that provides information on sensory difficulties and strategies to manage these.
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Age Specific Support Following Diagnosis
Pre-school Children
Early Bird Programme This is a 3 month autism-specific course which combines group training sessions for parents and carers with individual home visits. Please see separate information provided for further details.
Specialist nursery or help in community mainstream nursery Some children require specialist nursery input or additional support in mainstream nurseries to enable them to learn and thrive. Further information can be found with regards to this on the following website: www.kent.gov.uk/education-and-children/special-educational-needs/children-under-5-with-send
Portage Portage is an Educational Service for pre-school children with Special Educational Needs and Disabilities, offering bespoke packages of intervention to support a child’s development through Pre-school learning groups and or home learning sessions. For further information contact: Tel: 01892 501897 Email: [email protected]
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Age Specific Support Following Diagnosis
School Age Children The specific courses available differ depending on where you live. As per January 2019 the following courses are available but are subject to change. You will be informed of which courses you are eligible for upon diagnosis.
For Tunbridge Wells and Sevenoaks Families: Cygnet course
This is a 7 week parenting support programme aimed for 5 to 18 years olds. The programme is delivered over seven 2 ½ to 3 hour sessions. Please see separate information provided for further details.
For Tonbridge and Malling Families: Early Bird Plus
This is a 10 week programme aimed for 4-9 year olds. The programme is delivered in eight 2 ½ hour sessions and 2 home visits. Please see separate information provided for further details.
Cygnet course This is a 7 week parenting support programme aimed for 8 to 18 years olds. The programme is delivered over seven 2 ½ to 3 hour sessions. Please see separate information provided for further details.
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All School Age Children:
Your child’s school will be informed with your consent of your child’s diagnosis. We encourage parents and carers to work closely with their child’s teacher and SENCO. Teachers and SENCOs will assess whether your child has special educational needs. There are different stages for helping children with special educational needs depending on an individual needs.
These stages include:
• SEN (specialist educational need) support • Assessment (education, health and care assessment) • Education, health and care plans (EHCPs). These have replaced
statements of special educational needs. Further information can be found on the following website: www.kent.gov.uk/education-and-children/special-educational-needs/assessments-and-statements-of-special-educational-needs
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Local Support : The Kent Autistic Trust
Wendy Boorman is a Family Support Officer who can provide telephone support, home visits, information and advice in addition to running a local parents/carers group. She and her colleagues can help families work with Education, Health and Social Services and can provide information about local support groups.
Contact:
The Kent Autistic Trust
14 High St Bromptom, Gillingham, ME7 5AE
Tel: 01634 405168
Email: [email protected]
Website: www.kentautistic.com
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UK Support : The National Autistic Society
This is a UK charity that provides education, treatment, welfare and care to people with ASD. They are an excellent resource that additionally provide a helpline service. Contact:
The National Autistic Society
393 City Road, London, ECV1 1NE
Tel: 0202 7833 2299
Tel: 0845 070 4004 (helpline)
Email: www.autism.org.uk
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UK Support : ASD UK
Autism Spectrum Database UK
Upon diagnosis you will be provided with information from ASD-UK. This is a UK research family database of children ASD. The aim of ASD-UK is to provide accurate data about children with ASD to facilitate research and give families the opportunity to take part in research studies. The project is funded by Autistica (www.autistica.org.uk). Autistica is a charity that is committed to ensuring that increased understanding and new scientific knowledge will improve the lives of individuals with ASD and their families.
Your decision to include your child’s details on ASD-UK is entirely voluntary. The services you and your child receive will not be affected in any way by not being included on the database.
Further information including a newsletter can be found on the following website:
http://www.asd-uk.com/
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Other Useful Organisations/Contacts
AFASIC (Association for all speech-impaired children)
Offers advice on all speech and language difficulties
Lower Ground Floor of ‘Contact’ Offices, 209-211 City Road, London, EC1V 1JN
Tel: 03020 666 9410
Website: www.afasic.org.uk
Contact a Family
Gives advice, support and information to local parents’ groups and to individual parents anywhere in the UK
209 City Road, London, EC1V 1JN
Tel: 07910 795960
Email: London&[email protected]
Website: www.cafamily.org.uk
Information, Advice and Support Kent (IASK)
Provides support to parents and families when dealing with education issues related to their child’s health and social needs.
Website: www.kent.gov.uk/education-and-children/special-educational-needs/who-to-contact/kent-parent-partnership-service
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Carers First
Aims to give comprehensive help to all carers through access to information and resources, discussion, advocacy, one-to-one support and groups where they can meet other carers. They also offer short breaks or respite to adult carers including parent carers of children with learning difficulties.
Tel: 03003 03 1555
Email: [email protected]
Website: www.carersfirst.org.uk/kent
Father’s Club
This group supports fathers of children with autism. They have a Maidstone and Mid Kent group which meet monthly.
Tel: 01634 405168
DSUK South East Group
DSUK South East Group is a local branch of Disability Snow Sport UK. This group gives people with all disabilities including ASD from across the South East the opportunity to share in the joys and freedom that skiing offers, with the help of others and through the use of adaptive equipment and techniques.
Website: www.dsuksoutheastgroup.org.uk/
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BEAMS
BEAMS is a local charity that supports disabled children, young people and their families. They provide family advice including advice on direct payments and short break services ranging from after school clubs to overnight stays.
Tel: 01322 668501
Email: [email protected]
SPACE 2 BE ME
SPACE 2 BE ME provides support to disabled children through a range of clubs for 6-25 year olds. They additionally provide support to parents and the whole family.
Tel: 01622 764566
Email: [email protected]
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Benefits
Disability Living Allowance (DLA)
This is tax free benefit for adults or children with an illness or disability who need:
Help with getting around and/or Help with personal care
Many children with ASD are entitled to Disability Living Allowance.
Further information can be found at www.nas.org.uk
Carers Allowance
If you care for a child who receives the care component of DLA at the middle or higher rate and if you earn less than £84 a week, you may be entitled to Carers Allowance.
Further information can be found at www.gov.uk/carers-allowance
Family Fund
The family fund helps families caring for a severely disabled child under the age of 15. They give grants related to a child’s disability for items that are not provided by statutory agencies.
Further information can be found at www.familyfund.org.uk
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Useful Books Autism: The Facts
ISBN 0 192623 27 3 : P Bolton and Simon Baron-Cohen
The Autistic Spectrum: a guide for parents and professionals
ISBN 0 094751 60 9 : Lorna Wing
Autism: an inside-out approach
ISBN 1 853023 87 6 : Donna Williams
This book is written by a person with ASD and provides a picture of the world from their own perspective.
It Can Get Better
ISBN 1 899280 03 0 : Paul Dickinson and Liz Hannah
Published by the National Autistic Society, this provides information on dealing with common behaviour problems in young autistic children.
Autism: How to Help Your Young Child
ISBN 1 899280 65 0
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I have Autism- What’s That?
Kate Doherty, Paddy McNally and Eileen Sherrad
No ISBN; Down Lisburn Trust, Code NAS 482
What is Asperger’s Syndrome and How Will it Affect Me?
ISBN 1 899280 14 6 : National Autistic Trust
Everybody is Different
ISBN 1 899280 14 6
Published by the National Autistic Society, this is aimed for young people who have brothers or sisters with ASD.
Freaks, Geeks and Asperger’s Syndrome
ISBN 1 843100 98 3 : Luke Jackson
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Useful Additional Resources
Kartouche, Social Skills (key stages 1,2&3)
Computer software
http://creativeedutech.com/
Black Sheep Press provide speech and language resources that can be viewed and purchased on-line at
https://www.blacksheeppress.co.uk/
CBBC video ‘My Autism and Me’
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Quotes from Parents
“When your child is first diagnosed with autism it’s a great shock and very upsetting.”
“After the diagnosis our feelings were mixed. There was some
relief-the fact that our son’s difficulties weren’t simply due to bad parenting!
There was also of course, enormous anxiety.”
“Having a diagnostic label has helped; without it our son would have been
seen as a naughty or disturbed child. As it is, his teachers regard his
presence in the school as a challenge, and have gone out of their way to
help him integrate with others.”
“Be easy on yourself and help your child by giving them tools to
manage themselves-don’t do it all for them. Give your child opportunities to relax and
yourself too-you both have to work hard to understand and cope.”
“The most important thing for me has been meeting
with other parents. It’s been very valuable-you realise other
people are facing the same things. You don’t feel alone anymore.
We can learn from each other.”
“I understand the reason my child sometimes act the way
he does is his frustration at not being able to communicate with us, but also when he
finds things frightening and doesn’t understand what is happening.”
“Since diagnosis, the outlook has changed dramatically – Jack is a different child from the depressed, angry,
intimidated little boy he was last year.”
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This booklet was produced by:
West Kent Community Child Health Team
Kent Community Health NHS Foundation Trust
Cornerstones
58 Tunnel Road
Royal Tunbridge Wells
Kent TN1 2BU
Tel: 0300 123 4084
Email: [email protected]
Updated: February 2019
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