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A guide for families about
autism spectrum disorder (ASD)
Information for families in north and west Kent: Dartford, Gravesham and Swanley; Tonbridge and Malling; Tunbridge Wells and Sevenoaks. 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'. People often feel being autistic is a fundamental aspect of their identity.
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.
Children with autism have persistent difficulties with: • social interactions and communication • restricted and repetitive patterns of behaviour
These difficulties can impact their ability to function every day.
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Support following diagnosis
West Kent multi-agency ‘drop-in’ sessions These are regular term time sessions where you can meet professionals and other families. Dates are given out following diagnosis or you can contact: Specialist Teaching and Learning Service Broomhill Bank Outreach Services 01892 502466
Wendy Boorman; Family Liaison Officer Kent Autistic Trust 01634 405168 [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 a package of support for children with: • severe and profound learning difficulties • physical and sensory disabilities • a combination of disabilities.
Phone: 03000 41 11 11 Email: [email protected] Website: www.kent.gov.uk/social-care-and-health/care-and-support/how-to-get-help Early help Support with parenting techniques, support for family and group sessions. Website: www.kent.gov.uk/education-and-children/early-help-support-for-families 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, which provides information on sensory difficulties and strategies to manage these. Dental service Provides dental care for children who experience difficulty in accessing treatment general practices. There are community dentists in the local area. Please phone 01634 334660 for more information.
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Age specific support following diagnosis
Pre-school children Early Bird Programme This is a three- 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 at www.kent.gov.uk/education-and-children/special-educational-needs/children-under-5-with-send Early years LIFT A team of professionals, including your child’s teacher will discuss their learning needs and formulate a plan. Your child’s key worker will fill in the form with your consent. 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. More information can be found at KELSI or from Kent County Council. Visit: www.kelsi.org.uk/special-education-needs/kent-portage Email: [email protected] Phone: 03000 41 77 04 School age children The specific courses available differ depending on where you live. As of 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. Cygnet course Available for Dartford Gravesham and Swanley, Tunbridge Wells and Sevenoaks families. This is a seven-week parenting support programme for those with five-to-18-year-olds. The programme is delivered over seven sessions, each between two-and-a-half and three hours. Please see separate information provided for further details. Cygnet course Available for Tonbridge and Malling families. This is a seven-week parenting support programme for those with eight-to-18-year-olds. The programme is delivered over seven sessions, each between two-and-a-half and three hours. Please see separate information provided for further details. Early bird plus Available for Tonbridge and Malling families. This is a 10-week programme for those with four-to-nine-year-olds. The programme is delivered in eight sessions, each two-and-a-half hours, as well as two home visits. Please see separate information provided for further details. 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
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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 at www.kent.gov.uk/education-and-children/special-educational-needs/assessments-and-statements-of-special-educational-needs LIFT As with pre-schoolers, if additional needs are identified the SENCO will fill in the form with your consent.
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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. Phone: 01634 405168 Email: [email protected] Website: www.kentautistic.com Address: 14 High St Bromptom, Gillingham, ME7 5AE Ifield SMILE Centre This is a parents’ education support group, run by Ifield Special Needs School in Gravesend. The SMILE Centre also runs the Cygnet Programme and other educational sessions on sleep, dyslexia etc. Phone: 01474 536924 Email: [email protected] Address: Ifield School, Cedar Ave, Gravesend, DA12 5JT BEAMS A family support service, providing confidential advice and group support. They also help with short breaks, after-school clubs and holiday activities for ASD children and their families. They provide help with educational support and educational health care plan (EHCP) applications, and other benefits and disability allowances advice. Phone: 01322 668501 Website: www.wearebeams.org.uk Email: [email protected] Address: 38-40 St David’s Road, Hextable, Kent. BR8 7RJ Kent County Council The council provides support through funding the special need schools, approve the EHCP, and providing social care support if needed. It can also provide educational psychology assessment for learning difficulties. The website has a lot of information regarding school placement, support, free transport and allowances and benefits. Website: www.kent.gov.uk/autism Autism Support Group Facilitated by the Helen Allison School and NAS Dartford and Gravesham Branch. This group is for any parent or carer of children and young people with autism, and meets regularly to discuss any areas around autism and to share information in an informal and supportive environment. Meets during term time on Friday mornings from 10 to 11.30am at Emmanuel Baptist Church, Windmill Street, Gravesend DA12 1BB For further information, please contact Tim Cook at [email protected] or on 07990 742081. Father’s Club This group supports fathers and grandfathers of children with autism. It is informal and meets to talk about any issues or problems members may face They have a north Kent and a Maidstone and mid-Kent group which meet monthly. For further details, please email [email protected] or phone 01634 405168.
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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. It is an excellent resource that additionally provides a helpline service. Phone: 0202 7833 2299 Helpline: 0845 070 4004 Email: www.autism.org.uk Address: 393 City Road, London, ECV1 1NE Autism Spectrum Database UK (ASD-UK) Upon diagnosis you will be provided with information from ASD-UK. This is a UK research family database of children with 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 at www.asd-uk.com
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Other useful organisations and contacts Association for all speech-impaired children (AFASIC) Offers advice on all speech and language difficulties. Phone: 03020 666 9410 Website: www.afasic.org.uk Address: Lower Ground Floor of ‘Contact’ Offices, 209-211 City Road, London EC1V 1JN Contact a family Gives advice, support and information to local parents’ groups and to individual parents anywhere in the UK. Phone: 07910 795960 Email: London&[email protected] Website: www.cafamily.org.uk Address: 209 City Road, London EC1V 1JN 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 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. Phone: 03003 03 1555 Email: [email protected] Website: www.carersfirst.org.uk/kent 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 SPACE 2 BE ME SPACE 2 BE ME provides support to disabled children through a range of clubs for six-to-25-year-olds. They additionally provide support to parents and the whole family. Phone: 01622 764566 Email: [email protected] Walk Tall Local drama group for five-to-19-year-olds to build self-esteem. Phone: 0845 270 8130 Disability Sportslink For information about sporting activities for young people with disability living in the local area
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Phone: 01474 536254 Website: www.gcll.co.uk IPSEA Organisation that gives independent advice on special educational matters, law, appeals etc. Website: www.ipsea.org.uk
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Benefits D.I.A.L North West Kent Free confidential advice, including welfare benefits, leisure, housing, equipment and motoring. Phone: 01474356962 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 • with personal care.
Many children with ASD are entitled to Disability Living Allowance. Further information can be found at www.nas.org.uk Personal Independence Payment (PIP) If you are aged 16-to-64 you may be able to claim PIP. For more information visit www.gov.uk/benefitsadvisor or contact Carers First on 0300 303 1555 or DIAL North West Kent on 01474 356962. 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 Asperger’s Syndrome: A guide for parents and professionals ISBN 1 978 1 84310 669 2: Tony Attwood The Complete Guide to Asperger’s Syndrome ISBN 978 1 843 10 669 2: Tony Attwood I Am Special ISBN 978 1 849052 665: Peter Vermeulen 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 Autism specific community library This service is free of charge. It is available at Helen Allison School. For further information or to arrange a visit to browse please contact [email protected] or phone 01474 814878 or 07425 624456. Beams library Beams have a lending library of books about ASD for members to borrow. Phone 01322 668501 for more information.
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Useful additional resources
Autism alert card This plastic card, same size as a credit card, alerts the emergency services that the holder has an autism spectrum diagnosis. It is available free of charge from the Kent Autistic Trust to anyone with ASD in Kent. For an application form please contact The Kent Autistic Trust by visiting www.katfamilysupport.co.uk/autism-alert-cards or phoning 01634 405168. Medic alert Autism wristbands have been designed by people affected by autism. They provide vital personal and medical details in an emergency or if a person with autism wanders off or goes missing. Phone: 01908 951045 Access to public toilets A personal RADAR key for access to an accessible toilet can be purchased for a small charge. You will need proof of disability. Gravesend: Box office, Woodville Halls Windmill Street, Gravesend DA12 1AU
Dartford: Cash office, Main Reception, Civic Centre, Home Gardens, Dartford DA1 1DR Kartouche: Social Skills (key stages one, two and three) Visit http://creativeedutech.com Black Sheep Press Speech and language resources that can be viewed and purchased on-line at www.blacksheeppress.co.uk CBBC Video: My Autism and Me. Educational toys, games and resources For emotional awareness, traffic light timers and motor skills etc. Website: www.learningresources.co.uk Ready Laminated social stories, reward charts, PECs support eBay shop - ‘extra-special-friends’ Useful daily tips for parents Facebook - ‘Autism Sparks’ Cinema card Carers go free. Visit www.ceacard.co.uk Merlin’s magic Wand www.merlinsmagicwand.org
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Bus pass www.kent.gov.uk/roads_and_transport/getting_around/travel_by_bus/bus_services/bus_passes_for_the_elderly.aspx iPhone and iPad apps for communication www.mashley.net Concessions for the Orchard Theatre Contact Dartford Borough Council.
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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.”
Contact the Community Paediatrics Service You can find more specific information on ASD at www.kentcht.nhs.uk/service/community-paediatrics/ASD Phone: 0300 123 3067
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