After Diagnosis – What Happens Now?

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AFTER DIAGNOSIS

“……what happens now?”

A guide for parents whose child has just been diagnosed

with an Autistic Spectrum Disorder

This document is also available in Microsoft Word for printing as a 4 page, 2 column leaflet. To go to it click on this link: www.mugsy.org/happens.doc

If you have recently found out that your child has an Autistic Spectrum Disorder (ASD), you may be feeling overwhelmed. Lots of questions will be going through your mind, and you may have a feeling of sadness that your child is not going to be the son or daughter you expected. It is quite natural for you to feel this way. Even if you suspected that your child had an ASD, it may still be upsetting to have it confirmed by a doctor. Some people say it feels like a bereavement with the accompanying grief and feelings of loss, but others find it a relief that their concerns have been acknowledged and they were not being over-anxious parents.

When you receive a diagnosis it is worth remembering that the diagnosis has not changed your child in any way, but it has given you the opportunity to better understand him or her and what help he/she needs. Right now you will want to know what autism means for your child and the impact it may have on the family as a whole. Some typical questions you are likely to ask are:

Ш What is an autistic spectrum disorder?

Ш What caused it?

Ш Is there a cure?

Ш What are the long-term prospects?

Ш Is there someone I can talk to about all this?

Ш What help am I entitled to?

Ш What can I do to help my child?

In this leaflet we will try to answer those questions, and give you phone numbers for various organisations which might be able to help. There is also a separate sheet with full contact details for the organisations and other information.

First there are two points we would like to stress :

1. It’s not your fault!

Autistic Spectrum Disorders have nothing whatever to do with the way you have been bringing up your child. Parents of children with ASD’s are just like everyone else.

2. You are not alone.

In Britain there are over 500,000 people who are on the autistic spectrum. Each one’s behaviour, including your child’s, will be unique, but there are underlying common problems which bond the whole group together. Although in the past there was widespread ignorance of autism, today there is a growing awareness of the particular needs and difficulties that children with autism face, and many more professionals specialise in autism.

1. What is an autistic spectrum disorder (ASD)?

Autistic spectrum disorders such as Autism and Asperger Syndrome are disabilities that affect the way a person communicates and relates to people around them.

There are varying degrees to which people with an ASD are affected, but they will all have in common what is known as the triad of impairments. These affect:

· Social interaction (difficulty with social relationships).

· Communication (difficulty with verbal and non-verbal communication)

· Imagination (difficulty in development of imaginative play, and repetitive behaviour)

Many people with ASDs also have senses which are different, often either intensified or under-sensitive (such as very acute hearing or unusual reactions to touch.)

Specific diagnoses such as ‘autism’ or ‘Asperger Syndrome’ are sometimes used instead of ‘Autistic Spectrum Disorder’. ‘Asperger Syndrome’ is generally applied to somebody at the more able end of the autistic spectrum, with normal or above average intelligence and fewer problems with language. ‘Autism’ is usually applied to those people who also have learning disabilities, but may sometimes be used as a short way of referring to the entire autistic spectrum. ‘High functioning autism’ is another term used to describe some people at the more able end of the spectrum.

Onset of autism is almost always before the age of three years, although high functioning autism/ Asperger Syndrome may not be recognised until much later. ASDs affect more boys than girls, and have no class or racial barriers.

2. What causes it?

This is one of the most difficult questions to answer because the pattern of behaviours from which ASDs are diagnosed may not result from a single cause. There is, however, evidence that ASDs have a variety of physical, environmental and genetic causes, all of which affect brain development. It is not a mental illness, nor is it caused by poor parenting or emotional deprivation.

3. Is there a cure?

Autism is not curable but education and other strategies may result in significant development, especially if it is diagnosed early in life. As more people are diagnosed with ASDs there is an increasing amount of research being done into potentially helpful strategies.

4. What are the long-term prospects?

Autistic Spectrum Disorders are life-long conditions – children do not grow out of them. Unlike most other conditions the severity of it in adulthood cannot be judged when the child is first diagnosed. There are a number of indicators, such as the development of speech, that provide clues as to the likely outcome, but even these are not conclusive. Experts believe that the first 5 years of the child’s life are the most crucial and that is why intensive help before school is important, although intervention at any age is beneficial.

In adulthood, a few at the most severe end of the spectrum will require round-the-clock support. Some others will be unable to go out of their home unaccompanied – they are too vulnerable and don’t understand concepts such as money or the dangers of traffic. But many adults with ASD’s can live semi-independently or independently. Some are able to hold down a regular job. Some go to university, even become professors. Some marry or live with partners and have children. A lot of progress has been made over the past 20 years in understanding ASD’s – and hopefully this will in turn lead to significantly better outcomes in adulthood for those children recently diagnosed.

5. Is there someone I can talk to about all this?

It is often helpful to talk through your feelings with someone who understands what you are going through. Even well meaning friends and relatives sometimes find it hard to accept that anything is wrong: “He’s just a little bit quiet – he’ll catch up” ; “she looks normal enough to me”; “you just need to be firm with him”. Sometimes your partner too has difficulty in understanding how you feel. All this can lead to a sense of isolation and of having no one to talk to who understands. There are several ways to find someone to talk to who has been through the same experience.

One way to get is to join a local autism support group. Whilst it can be daunting going out and meeting new people, it can be well worth making the effort. By getting to know other parents who have children with an ASD you will find people who can understand your difficulties and who will support you and your child in the years to come. Many of them will have already dealt with issues you are facing and can pass on their experiences. The National Autistic Society (NAS) Surrey branch is a support group run by parent volunteers which holds regular meetings and other events throughout Surrey, and also has a website and library, all of which will provide you with much needed help and information.

Contact NAS Surrey Branch Officer Sara Truman. Tel: 01483-822630. Email: nas@mugsy.org

The National Autistic Society (NAS) Parent to Parent Line is a conf > Volunteer parents access the line on their shift and ring callers back at a convenient time. Tel: 0800 9 520 520

If you would prefer to talk to someone in person then in Surrey an organisation called Face to Face can put you in touch with a trained volunteer befriender who has been through the experience of having a child diagnosed with a disability. Tel: : 01932 567123 (West) or 01737-779979 (East).

The NAS runs occasional HELP! courses which provide parents and full-time carers with post diagnostic information and advice, either over 6 three-hour sessions or in one or two day courses. For more details call the NAS HELP! officer for the South East on 0207 704 3804. (Also see Earlybird, below.)

6. What help am I entitled to?

You may qualify for financial help. Many children with autism and their carers are entitled to additional financial benefits and allowances. The main benefits for younger children and their carers are Disability Living Allowance (DLA) and Carers Allowance (CA). These benefits are payable regardless of parental income and provide money to help offset the additional financial costs of having a child with ASD.

DLA should be applied for first. Don’t be put off by the size of the application form – you should be able to get help filling it in from your social worker, health visitor or local Citizens Advice Bureau. Once obtained you may be entitled to CA and claiming this is a much simpler process. You should consider claiming these benefits as soon as possible as there is no back-dating of payment. Claim forms are available on the internet at www.dwp.gov.uk or from the local DSS, Citizens Advice Bureau, Children’s Unit, or Hospital Social Services department. Or you can call 0845-712-3456 for a DLA Claim Pack and 01253-856123 for a CA form.

You may be able to get some help from your local Social Services office. They are required under law to have the main responsibility for providing support for children with disabilities and their carers. This support may be arranged by Social Services and could involve liaising with other authorities such as health or education.

Social Services are obliged to assess any person who appears to be in need of services, and will dec > Carers are also entitled to a separate assessment of their needs if they provide ‘a substantial amount of care on a regular basis’. Start by contacting your local Social Services department (the number will be in the phone book).

The kind of help that Social Services may offer is short breaks (giving you a break from caring for your child); advice nd counselling; childminding and playschemes. However, Social Services departments have limited resources and will not be able to give help to all those to request it.

Your child may meet the criteria to go on Surrey’s Children’s Disability Register, which is used by Surrey Children’s Service to plan services and to send information to parents of children with disabilities. For more details contact the Register Administrator on 020-8541-8792.

7. What can I do to help my child?

You know more about your own child than anyone else, especially when it comes to the question of his or her particular problems, likes and dislikes. As with all children, a child with autism is a unique individual and you, as the parent or carer, are the expert.

Education is perhaps the most important issue facing parents, with so many crucial decisions to make. What kind of school will be best for my child – mainstream or special school? What extra help will be prov > The local Educational Psychologist may then visit your child to assess his or her needs.

In Surrey , Outreach Teachers from schools for children with ASDs can support children in mainstream and other special schools, and offer some family support. They also run Earlybird and Earlybird Plus courses, in which parents of pre-school children with autism learn how to help their child. The Portage service offers a similar programme for children with all kinds of learning or developmental difficulty. For outreach call Freemantles School, Tel: 01483-545680. or Linden Bridge School, Tel: 020-8330-3009. For information on Earlybird and Portage contact the co-ordinator on 01737-737979.

In Hampshire the LEA run ‘Thomas Training’ courses for parents and professionals, which aim to develop and improve the education and early years experiences of Hampshire children with complex communication difficulties/autistic spectrum disorders. There are also Earlybird courses run by the Hampshire Autistic Society. Tel: 01489-880881

Some children may require a ‘Statement of Special Educational Needs’ – a legal document that specifies the extra provision that your child will receive from the LEA and other agencies such as the NHS. However, it is important to note that it is not necessary to have a Statement in order for your child to receive additional support. You can find out more about the Special Educational Needs (SEN) process from Partnership with Parents offices. Partnership with Parents – Surrey Tel: 01737-737300. Parent Partnership – Hampshire Tel: 01962-845870

The number of therapies available to children with autism has increased considerably during the past 10 years or so. In addition to speech and language therapy or occupational therapy there are different educational approaches; special diets; medication; homeopathic or complementary medicine; sensory, music or art therapies; auditory stimulation, and more. Many make great claims as to their effect, but it is important to remember that many of the approaches are not widely accepted by professionals; most involve some financial outlay and there is no guarantee of success. However it is clear that some children, particularly those of a young age, do benefit from some of these approaches, so it is certainly worth investigating therapies in order to decide for yourself whether a particular approach might be suitable for your child. Further information about the various therapies available can be obtained from the National Autistic Society Helpline tel: 0845-070-4004.

…. you are entitled to seek a second opinion about your child’s diagnosis . It is important that your child is correctly diagnosed as early as possible, because accessing appropriate provision (education etc.) is generally much easier with a firm and accurate diagnosis. Sometimes there may be difficulties in getting a firm diagnosis. This might be due to your child’s young age and apparently subtle difficulties, or the doctor’s inexperience with ASD’s or to a preference to adopt a ‘wait and see’ approach. If you are in any doubt about the diagnosis (or lack of it) then it may be appropriate to ask for a second opinion. Your G.P. can make a second opinion but if possible discuss it with your child’s Consultant first. The Consultant will be able to discuss the ‘pros and cons’ and best timing of a referral as well as the most appropriate second opinion for your child.

  • The National Autistic Society 393 City Road, London EC1V 1NE. Telephone 0207-833-2299. Autism Helpline 0845-070-4004. Email: autismhelpline@nas.org.uk Website: www.nas.org.uk. The UK’s main charity for autistic spectrum disorders. Provides information, advice, advocacy, publications etc.
  • The National Autistic Society (Surrey Branch) Branch officer: Sara Truman. 4A West Meads, Onslow Village, Guildford, Surrey GU2 7ST. Tel: 01483-822630 Email: nas@mugsy.org Website at www.mugsy.org.Support through meetings for parents and activities for the whole family. The website contains local information, including sound recordings of talks from experts in ASDs, and there is also an email support group.
  • For details of Hampshire branches call the Autism Helpline 0845-070-4004
  • NAS Parent to Parent line Confidential telephone support. Leave a message on the answer line at any time and parent will call you back at a convenient time. 0800 9 520 520
  • Face to Face West Surrey: c/o White Lodge Centre, Holloway Hill, Chertsey. KT16 0AE Tel: 01932-567131. East Surrey: c/o YMCA, Princes Road, Redhill RH1 6JJ Tel: 01737-779979. Website at www.face2facenetwork.org.uk.
  • The Hampshire Autistic Society 1634 Parkway, Fareham, Hampshire. PO15 7AH Tel: 01489-880881 Email: info@has.org.uk
  • Carers National Helpline offers advice about carers assessment, benefits and general information about care issues. 0808 808 7777 (Mon-Fri 10-12, 2-4pm)
    • Carers UK website: www.carersonline.org.uk.
    • Surrey carers website: www.carersnet.org.uk
  • Disability Living Allowance or Invalid Care Allowance claim packs Call 08457-123456 for a DLA claim pack and 01253 856123 for an ICA form. See the NAS website at www.nas.org.uk for information about claiming DLA and other benefits.

SPECIAL EDUCATIONAL NEEDS

  • Partnership with Parents – Surrey c/o Noke Drive, Redhill. RH1 4AX. Tel: 01737 737300 Email: pwp@surreycc.gov.uk. Website at www.pwpsurrey.org.
  • Parent Partnership – Hampshire Hampshire Education Dept., The Castle, Winchester, Hants. SO23 8UG Tel: 01962-845870 Fax: 01962-846219.
  • The NAS Education Advocacy Line is a scheme that aims to offer advice and support on education matters. Tel: 0845-070-4002. You will be asked to leave brief details and a volunteer will contact you afterwards.
  • Autism Outreach . For West Surrey primary schools contact Freemantles School, Smarts Heath Rd, Mayford Green, Woking. GU22 0AN Tel: 01483-545680. For secondary schools contact The Abbey School, Menin Way, Farnham, GU9 8DY Tel: 01252-725059. For East Surrey primaries contact Linden Bridge School, Grafton Road, Worcester Park. KT4 4JW Tel: 020-8330-3009. For secondaries contact West Hill School, Kingston Rd., Leatherhead. KT22 7PW Tel: 01372-814710.
  • Earlybird, Earlybird Plus and Portage . Call Sue Weston on 01737 737979
  • The Independent Panel for Special Education Advice (IPSEA) offers advice on special education needs issues. To contact IPSEA : telephone their free advice line on 0800-0184016 or send a stamped, addressed envelope to: Independent Panel For Special Educational Advice (I.P.S.E.A.), 4 Carlow Mews, Woodbridge, Suffolk IP12 1EA.
  • The Advisory Centre For Education (ACE) offers information and advice on all aspects of the maintained education service. 1B Aberdeen Studio’s, 22-24 Highbury Grove, London N5 2DQ Telephone: 0808-800-5793 (2- 5pm Mon-Fri). Website: www.ace-ed.org.uk.

OTHER USEFUL INTERNET RESOURCES

The Autism Services Directory is building up a database of information on services of all kinds for all ages across the UK. www.info.autism.org.uk/

Research Autism is building a database of interventions. http://www.researchautism.net

Do 2 Learn is an American website with a lot of free resources to help children with disabilities, including picture cards for communication. http://www.do2learn.com

  • ABA – Applied Behavioural Analysis
  • ADHD – Attention Deficit Hyperactivity Disorder
  • AS – Asperger Syndrome
  • ASD – Autistic Spectrum Disorder
  • CA – Carers Allowance
  • CAMHS – Child & Adolescent Mental Health Service
  • DLA – Disability Living Allowance
  • EP – Educational Psychologist
  • EPS – Educational Psychology Service
  • HFA – High Functioning Autism
  • IEP – Indiv >

Local Health Professionals

You may come into contact with a number of different professionals during and after the diagnosis of your child. Here is a brief guide to what they do.

Paediatricians are doctors who are experts in the health and development of children. They assess, diagnose and treat children with developmental disorders, including ASD.

Child psychiatrists are doctors who are experts in understanding how developmental disorders can affect children’s behaviour, emotional adjustment and social relationships.

Clinical Child Psychologists are experts in the development of learning, behaviour, emotional adjustment and social relationships. They provide assessment and counselling for developmental and behaviour problems.

Speech and language therapists (SaLTs for short) are experts in the development of language and communication. They can help to promote language and communication in people with developmental disabilities, including autistic spectrum disorders.

Children with learning disabilities team is a group of professionals including nurses, psychologists and psychiatrists. They provide advice and support on a range of practical issues affecting children with learning disabilities or developmental disorders.

Occupational therapists (OTs) are experts in understanding how developmental disorders can cause difficulties with senses and movement. OTs give practical advice to parents and carers about how to reduce every day problems faced by people with developmental disabilities such as ASD.

Dieticians provide advice, information and teaching on nutrition and diets, including modified diets for those who require them.

The Community Dental Service welcomes children with special needs and offers treatment and preventative advice on diet, tooth brushing and fluoride supplements.

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