Autism Spectrum This leaflet has been produced with and for parents and carers Disorder (ASD) If you would like this information in another language, An advice pack for parents and carers audio, Braille, Easy Read, or large print please ask a member of staff. You can ask someone to contact us on your behalf. Any complaints, comments, concerns, or compliments please speak to your doctor or nurse, or contact the Patient Advice and Liaison Service (PALS) on 01227 78 31 45, or email ekh-tr.pals@nhs. net Patients should not bring in large sums of money or valuables into hospital. Please note that East Kent Hospitals accepts no responsibility for the loss or damage to personal property, unless the property had been handed in to Trust staff for safe-keeping. Further patient leaflets are available via the East Kent Hospitals web site www.ekhuft.nhs.uk/patientinformation Information produced by Child Health Date: April 2021 Review date: August 2024 Web 333 ASD (April 2021) 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? 3-5 overview of ASD, how to look after yourself and siblings of your child with ASD, as well as listing further information and support groups in • What causes ASD? 5 East Kent. • My child’s individual report 6 This booklet will use the term ASD. However, you may also see it referred to as ASC, or autistic spectrum condition. These are the same. • What might help my child? 7 Before 2013, ASD did not exist as a diagnosis; instead other diagnoses were made such as childhood autism, atypical autism and Asperger • How can I help support myself and my child? 8 syndrome. All of these have now been replaced with the diagnosis of ASD. Although these labels are out of date, some people and • How can I support my other children? 9 information sources may still use them. • Siblings’ Group 9 • Strengths 10-11 What is ASD? • EarlyBird course 12 Autism Spectrum Disorder is described by the National Autistic Society as • The Cygnet Programme 13 • How can I help my child? 14 “A lifelong developmental disability that affects how people perceive the world and interact with others.” • How can I use visual resources to help my child? 14-19 • National support and information 20 ASD is a spectrum disorder. Some people with ASD may need a significant amount of support through their lives, others will build • What support and information groups are in East Kent? 20 independent, successful lives and careers. • Are there any books I can read? 21-22 Challenges typical of people with ASD are social interaction difficulties, communication difficulties, and differences in behaviour and • What next? 23 imagination. ASD (April 2021) 2 3 • Social interaction • Behaviour and Flexible Thinking This is about joining in with people, ‘reading’ people, understanding Children who have ASD may show some repetitive and unusual and expressing emotions. Problems experienced by those with ASD behaviours. These may include: may include: - moving their bodies in unusual ways such as stretching their - avoiding or limited eye-contact, or staring fingers, flapping their arms or spinning round - standing too close to people - preferring to play alone or wanting to tell others what to do in play - wanting to spend a lot of time alone - not being very interested in a range of imaginative play - wanting affection on their own terms - tending to inspect and arrange toys and possessions rather than - not readily understanding social rules - they may seem ‘odd’ or playing with them for example lining them up socially inappropriate - developing intense interests which, in older children and - ignoring or appearing insensitive to other people’s needs, adolescents, may continue into adulthood. These may lead to thoughts, and feelings careers for example in IT, engineering, science and the law - difficulties making and keeping friends - finding it difficult to see situations from others’ points of view; and - getting on better with adults or younger children rather than - difficulties coping with change. children of the same age; and - finding ‘having a chat’ difficult, perhaps ignoring what is said to them, talking ‘at’ people, tending to interrupt or to needing What causes ASD? prompting to know when to speak. Nobody knows the exact cause of ASD. Evidence suggests that genetic factors are involved, affecting the development of the brain. • Communication However, it is certain that parenting does not cause ASD. This is about using spoken language and body language to communicate with people for a range of reasons. For example to Although it is possible that children with ASD are born into families request something, to point things out, to explain, to share a joke. with no history of ASD, it does often run in families. Research findings Some children (those most severly affected by ASD) may never suggest that identical twins (who share the same genes), have up to learn to communicate. Most will, and some may develop good 90% overlap of ASD - which means that up to 90% of the time if one language skills, but challenges may remain. These may include: twin has ASD, the other will have it as well, suggesting a strong genetic influence. It is possible that ASD is caused by the combination of - using words and phrases repetitively several hundred genes, rather than just a few. - speaking without always understanding - copying what others say There seem to be other factors that can be associated with ASD. More - speaking voice sounding different to others, perhaps high-pitched research is needed, but possible factors include low birth weight, or too quiet difficulties in pregnancy and labour, blood and oxygen flow in the - differences to others in facial expressions and gestures, and womb. Parenting is not one of these factors. - difficulties understanding what these mean in others; and - forgetting what is said to them. ASD (April 2021) 4 5 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, people with the diagnosis can be be split into two sections. happy, proud, and successful. However, difficulties with development, learning, behaviour, emotional wellbeing, communication, and social • The first section will be an overview of your child’s developmental life can be experienced. history and include evidence from your child’s life. This will include many different aspects of your child’s life such as school, sleep, and Specialised treatments and approaches are always being developed. physical attributes. These can have a positive impact on a child’s development. • The second section will focus on the assessment carried out with • Education your child. This will usually be the ‘Autism Diagnostic Observation Some children with ASD have special education, for example they Schedule’ (ADOS-2). The report will highlight in detail your child’s may go to a special school or a specialist unit in a mainstream strengths and areas of weakness, as observed in clinic. school. However, most children with ASD are part of an ordinary class in a local school. Teachers are often experienced in working The conclusion will be clearly stated. Recommendations may be made with children on the autism spectrum and know how to access and what happens next for you and your child with the Child Health further support and training. This is often via the Specialist Teaching team will be stated. and Learning Service. To help them do this, you may be asked to give consent for them to talk about your child at a Local Inclusion What happens next with the report is up to you. With your consent, Forum Team (LIFT) meeting. it can be shared with other professionals (such as schools and therapists). This may help people understand your child better. It may • Behavioural therapies lead to additional support. You are welcome to share it with any person These may help a family cope with any behavioural issues or service you wish. associated with ASD. They may also be helpful to teach your child social skills. • Medicine For some children medication can be an option to help improve specific symptoms, for example obsessive or agitated behaviour. ASD (April 2021) 6 7 How can I support myself and my child? How can I support my other children? The experience of having a child diagnosed with ASD is different for You may feel that your child with ASD takes a lot of your time and everyone. Some people feel upset, some surprised, others feel relieved attention. Siblings might feel this way too. When possible: that their child’s difficulties have been identified, and others can feel frustrated and helpless. Whatever your reaction is, it is perfectly natural - make time for siblings and nothing to be ashamed of. It may be helpful to remember that your - do some activities with them separately child is the same now as they were before their diagnosis, all that has - allow siblings to have time to themselves, for example a sleepover changed is that their difficulties have been identified. Identifying their at a friend’s home or their own TV time difficulties early will help your child and allows you to be equipped for - allow siblings to bring their own friends home and enjoy themselves the years ahead. without interruption - listen to their worries, concerns, and the things that are important to It is important to look after yourself. Take time from your day just to them; and focus on you. This could be as simple as going for a short walk or - listen to their ideas; older children in particular may have good ideas reading a book.