After diagnosis Services and support for children with autism and their parents and carers
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1 After diagnosis Services and support for children with autism and their parents and carers
2 If your child has recently been diagnosed as having autism (including Asperger syndrome) you will have a lot of questions. In many ways, getting a diagnosis can feel like the start of a journey. Many people contact us to ask, What next? Here, we detail some of the services and support that exist for children with autism and their families. We also offer some information about behaviour and tips on how to support a child with autism. Services for children and young people with autism General understanding and awareness of autism is increasing, meaning that services and support particularly for children with autism are slowly becoming more widely available. Often, different services are available in different areas so you may find that you can t access all the support you might wish for in your local area. Autism is a hidden disability you cannot tell that someone has autism just by looking at them and some people with autism can appear to be very able, so you may need to educate some people, including professionals, about your child s condition and their need for support. Depending what support your child needs, you would usually contact your local social services department (social work services in Scotland) if they need extra support at home; your child s school or local education authority (LEA) if they need extra support in school; or both. Education Education can do a lot to improve a child s quality of life and long-term opportunities. Children with autism who have special educational needs (SEN) or additional support needs (ASN) in Scotland are entitled to receive extra help in school. This may be provided by your child s school or, if their needs are more complex, it will be funded by your local authority: > in England, Wales and Northern Ireland your local authority will fund the support through a statement of special educational needs > in Scotland, education authorities will fund the support through a co-ordinated support plan. Your child may already be receiving extra help in school but if they aren t, and you or their teaching staff think that they need it, an assessment of their needs may be carried out. Children with autism may go to mainstream schools, special schools, autismspecific schools or mainstream schools which have a specialist teaching base attached to them. Not all local authorities offer all these types of provision. Some parents and carers challenge the decision made about where to educate their child at tribunal. > Our Advocacy for Education Service can give you more information about educational rights and entitlements for children and young people with autism, and appealing at tribunal. Tel: (interpretation service available). > For general information about education for children with autism, visit or to find out about the six schools that we run, see > Our publication, Special educational needs: a guide for parents and carers, is available to buy online at This has information about the education system in England and Wales only. Help from social services The role of social services is to support and help people to live more independently. Children with a disability are entitled to have an assessment of their needs carried out by their local social services department.
3 As a result of an assessment of needs, you may be entitled to a number of services which your local social services department provides. These may include: > day services, residential services or housing > home help or respite care > aids, equipment or grants for housing adaptations > services for carers, if you (the carer) are judged to need them. An assessment of needs should be a straightforward process but in reality, you may find that your local social services department does not offer all the services you need, or that you disagree with them about the level of support your child needs. If your social services department cannot provide certain services they should talk to other agencies and ask if they do. Alternatively, you can be given a Direct Payment, which you can use to arrange services for your child. Other services which children with autism may benefit from, but which are not generally provided by social services, include: > a speech and language therapist > an occupational therapist > a psychiatrist or psychologist. These services can be accessed through the NHS following a referral from your GP, or privately. Alternatively, they may sometimes be provided by your child s school. If you are unhappy with any part of your child s assessment of needs, including the services they are thought to need, you have the right to complain. Social groups Social groups are a way for young people with autism to meet and socialise. Some groups invite brothers and sisters along too. Social groups operate in different areas of the UK and are run by local support groups, organisations such as the NAS, or local authorities. > To find out if there are any social groups in your area, telephone our Autism Helpline or visit our Autism Services Directory, Services for parents and carers Carer s assessment If you are asking your local authority to carry out an assessment of needs for your child, you can also ask them to carry out a carer s assessment for you. As a result of this, you may be entitled to extra help such as respite care, travel assistance, training, counselling or help at home. It depends on the needs your local authority identifies. You may also be eligible for Carer s Allowance see the Benefits section for more information. Support for parents and families Courses, conferences and events for people with autism of all ages, and their parents and carers, take place across the UK. Other events are aimed at professionals but may also be of interest to you. Details can be found at: There are also a number of parent support programmes which offer information about autism and ways of supporting your child. The NAS runs the EarlyBird and help! programmes, and a parent support programme is also offered by the charity Barnardo s.
4 You may also benefit from respite services or befriending schemes both are a way for families to have a short break and for children with autism to get out and about with a volunteer or a support worker. These services are provided across the UK and may be offered to you as a result of your child s social services assessment. > Our Autism Helpline can give you more information on parent support programmes and respite services in your area, or you can search online at > For more information on NAS services for parents and carers, including befriending schemes, visit Contact with other parents and families It can be helpful for families of people with autism to speak to other people in a similar situation. > There are many family support groups around the UK; search for details on NAS branches also operate across the country; most are run by local parents and carers of people with autism. Find out where your nearest branch is by visiting > Our Parent to Parent Line offers free, confidential telephone support to parents of people with autism. Telephone leave a message and one of our volunteer parents will call you back. Please note that this service is only offered in English. > There are many online support groups, blogs and forums run by people with autism, their parents, carers and family members. Some of these are listed on our website: > The charity Contact a Family can put parents of children with disabilities in touch with other parents. Find out more at: Benefits Some of the benefits that you or your child may be entitled to include: > Disability Living Allowance (DLA) > Carer s Allowance > Blue Badge car parking permits > Motability > Child Tax Credit > Income Support > Housing/Council Tax Benefit > Working Tax Credit. You can find out more about these benefits by visiting our website: The benefits enquiry line can give basic advice about benefit entitlement and send you DLA claim forms. They can also tell you who to contact to claim other benefits. The telephone number for the benefits enquiry line is if you live in England, Scotland or Wales; or if you live in Northern Ireland. Many of the benefits administered by the Department of Works and Pensions can be claimed online at Information about filling in claim forms is available from: > our welfare rights service; telephone to make an appointment to speak to our adviser (interpretation service available) > your local Citizens Advice Bureau > professionals involved with your child may also be able to offer advice on filling out particular sections of claim forms.
5 Behaviour Because of the difficulties they experience, some children with autism may appear to behave inappropriately. Others will display challenging behaviour. Both may happen because: > they are trying to communicate > they do not understand the social rules for a given situation and are not sure how to behave, or are trying to avoid social contact > they are feeling anxious, scared or frustrated > they have sensory sensitivity for example, if they are hypersensitive to sound they may be distressed by noise in their environment > they may be trying to cope with change, which many children with autism can find difficult > they enjoy a particular activity but do not understand its consequences. For example, one person with autism loved the sound of breaking glass but did not realise it was not safe or acceptable to break glass > there may be a medical reason for your child s behaviour, particularly if it has changed suddenly. It can be useful to keep a behaviour diary to help you identify some of the triggers for the behaviour: what causes it in the first place? It can then be easier to develop a way to deal with it. story, a short story (often with pictures) which explains who they will meet or what will happen beforehand, so that they know what to expect. Sometimes you may not know why your child is behaving in a particular way. A psychologist, doctor or a specialist teacher may be able to help you. The important thing to remember is that it is not your fault, and that patience and a consistent approach to behaviour can help to bring about change. The ways you can help > Work with your child to encourage better means of communication, for example some may prefer to use visual symbols or sign language to communicate what they want; others will have a good grasp of language but it can be helpful if you speak in short, direct sentences with their name at the beginning to help your child understand you. > Structure your child s day so that they know what is going to happen that day and what to expect. You could make a timetable for them. > You may find a way to channel some behaviour into socially acceptable forms. For example, if your child likes clapping their hands loudly, you could encourage them to play an instrument like drums. > If your child is anxious or upset, find a quiet place where they can calm down. > If you know there is an object that will help your child to calm down, such as a favourite toy, keep this to hand. For example, is your child always upset in a particular environment where there are bright lights or a humming background noise? It may help to adapt that environment, if you can. Are they unsure how to respond to different people or social situations? You may be able to create a social > There may be a relatively simple solution to a problem. For example, if your child does not like loud noises, you could give them earphones to wear when they are out and about. > Slowly expose your child to some of the situations that they find difficult. When they cope well, you could reward them with verbal
6 praise, by giving them one of their favourite objects, or by allowing them to do something they especially enjoy. > Allow a set amount of time for your child to do their favourite activity in a safe environment, as this is likely to be calming or relaxing. > Seek a doctor s advice if you think that a medical problem may be causing behavioural difficulties. More information about behaviour, communication and play in children with autism is available on our website: If you would like to speak to our welfare rights adviser, contact the Autism Helpline and we will arrange a telephone appointment for you. Our Autism Helpline offers a telephone interpretation service. This allows us to provide information through interpreters in 150 different languages. Callers need to speak in English at first to let staff know which language they prefer to use. The Helpline will then call you back. Our website contains information which has been translated into other languages. Visit Therapies and interventions There is currently no cure and no specific treatment for autism. Children with autism grow up to be adults with autism. However, there are many approaches, therapies and interventions which can improve a person s quality of life. These include communication-based interventions, behavioural therapy and dietary changes. More information can be found on our website at: Where can I get more information? Our Autism Helpline offers information and support on autism and related issues. We also offer a welfare rights service, which provides advice about the benefits you may be entitled to, completing claim forms and what to do if you think a decision is wrong. Tel: autismhelpline@nas.org.uk Open 10am-4pm, Monday-Friday 10
7 Membership of the NAS gives you the support and strength of a national organisation, combined with the understanding of a close local network. By adding your voice, you strengthen our campaigns for the rights and entitlements of people affected by autism. Find out more at The National Autistic Society is the UK s leading charity for people affected by autism. Over 500,000 people in the UK have autism. Together with their families they make up over two million people whose lives are touched by autism every single day. Despite this, autism is still relatively unknown and misunderstood. Which means that many of these two million people get nothing like the level of help, support and understanding they need. Together, we are going to change this. The National Autistic Society 393 City Road London EC1V 1NG Switchboard: +44 (0) Autism Helpline: Minicom: Fax: nas@nas.org.uk Website: Printed by Newnorth The National Autistic Society is a company limited by guarantee registered in England (No ) and a charity registered in England and Wales (269425) and in Scotland (SC039427), registered office 393 City Road, London, EC1V 1NG Autism Helpline supported by 11 The National Autistic Society 2009 Code NAS 844
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