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You are here: Home > Your visit > Patient leaflets > Paediatrics > Cheyne Child Development Support Leaflet - For parents who have a school aged child with a diagnosis of Autism Spectrum Disorder (Hammersmith & Fulham)

Cheyne Child Development Support Leaflet - For parents who have a school aged child with a diagnosis of Autism Spectrum Disorder (Hammersmith & Fulham)

What is Autism?

We each have our own set of strengths and difficulties.

Autism spectrum disorder (ASD) describes a particular pattern of these strengths and difficulties across three main areas:

Many children with autism also show differences in their sensory processing:

 

The way we understand the world depends on how our brain processes all of the information streaming through our senses. People who have autism process this information in a different way. They perceive their world and communicate with others in a way that may be considered unusual or different.

These differences can make everyday life difficult for a person who has autism; their responses to situations may seem unexpected, unusual and sometimes challenging. 

How is Autism different from Asperger’s, Atypical Autism and other forms of Autism?

In the past, Autism was categorised into different “types”. Now only one term is used when a child is diagnosed: Autism Spectrum Disorder (ASD). It may be useful to think of ASD as an “umbrella term” for the different “types” of Autism you may hear of.

What causes ASD?

ASD is referred to as a lifelong neurodevelopmental condition; this means it is present from birth and results from differences in brain development.

The exact cause of ASD is still being investigated. Research suggests that a combination of factors (genetic and environmental) may account for changes in brain development.

Autism is not caused by a person’s upbringing or social circumstances.

Is my child’s autism “mild” or “severe”?

All people with autism share three main areas of difficulty. The extent to which these difficulties impact on their life will vary according to a number of factors, for example:

  • The individual’s set of strengths and difficulties
  • Their language skills i.e. their ability to safely and effectively communicate their needs to others
  • Any other conditions that affect information processing e.g. Attention Deficit Hyperactivity Disorder (ADHD)
  • Social factors e.g. having opportunities to socialise 

A person may develop skills that help them manage or cope with their difficulties in certain situations and they may be better able to use these skills on some occasions more than others. A person’s difficulties will likely shift between “mild” and “severe” across settings and at various stages of their life.

Whilst your child may develop skills that help them cope or manage their (e.g. learning how to initiate a conversation), they may be better able to use these skills on some occasions more than others (e.g. with familiar adults compared to unfamiliar peers).

As strengths and difficulties change over time and across settings it is not possible to judge whether someone has “mild” or “severe” Autism. Autism is better understood as a spectrum. Gaining a clear understanding of your child’s individual strengths and difficulties is a useful first step when thinking about the support they will need after diagnosis.

The following visual guide explains what is meant by autism spectrum: https://autismanimated.com/dolph/m/feed/view/Understanding-thespectrum-a-comic-strip-explanation

Receiving a Diagnosis

When you first receive your child’s diagnosis of ASD it can be a lot to take in. Some families are expecting to receive a diagnosis whereas for other families it might come “out of the blue”. Either way, the emotional effects of the diagnosis can seem quite overwhelming. 

Feelings and reactions vary from person to person; some people may feel worried, sad, relieved, guilty, angry or a combination of any number of feelings. Some people might be more unsure on how they feel or just feel numb. It is important to acknowledge all feelings and talk about these with somebody you trust or a health professional.

Family members are likely to have different reactions to the diagnosis and some may take longer than others to accept and understand the diagnosis. Sharing information from assessment reports, encouraging them to speak to professionals or attend a post-diagnosis parent group can be helpful.      

Telling your Child   

When to tell your child about their diagnosis is your decision. This will vary depending on you and your child. Some children may notice they are different and ask questions at a young age. Others may struggle to understand the concept of Autism until they are a bit older. 

There isn't one 'right' way to tell your child about their diagnosis, but it may help to take the following things into consideration: 

  • Who is the best person in the family to bring up the subject? Who is the child most comfortable with? 
  • Choose a good moment to bring it up, when the mood is calm and the environment is familiar. 
  • Try to avoid being interrupted if possible as your child may have questions.
  • Follow your child’s lead. It is often helpful to provide information over a series of small conversations rather than having one big conversation.  
  • If your child asks you something that you are unsure about, it’s okay to tell them you don’t know but will find out and come back to them with an answer. 

The National Autistic Society suggests that a popular way to bring up the conversation about Autism is to talk about differences and think about family member’s strengths and weaknesses. Autism is just a particular pattern of strengths and weaknesses. For more information on how to tell you child, please visit the National Autistic Societies website: www.autism.org.uk

Below are some books which you may find useful: 

  • AUTISM: TALKING ABOUT A DIAGNOSIS by Rachel Pike
  • HOW TO LIVE WITH AUTISM AND ASPERGER SYNDROME by Chris Williams and Barry Wright
  • I AM SPECIAL by Peter Vermeulen
  • I HAVE AUTISM... WHAT'S THAT? by Kate Doherty, Paddy McNally and Eileen Sherrard 

What happens next?

Consistent with national guidelines, after diagnosis we offer a follow-up appointment that is provided by a member of the assessment team.

There can be a lot to take in during the review appointment; emotions and questions are likely to arise once you have had time to process the diagnosis given to your child. We offer support to all families whose child has received a diagnosis of ASD.

Families can also often access support within their local community. 

Groups at the Cheyne 

ASCEND

The ASCEND group is run by Clinical Psychology for parents/carers whose school-aged child has received a diagnosis of ASD. The group provides an opportunity to gain a greater understanding about what Autism is, what underlies difficulties and to develop strategies that can support your child’s social and emotional skills.

Raising Healthy Eaters

Raising Healthy Eaters is a program aimed at supporting parents of children with additional needs who are experiencing difficulties with feeding or eating. This group is offered by Occupational Therapists and Clinical Psychologists.

The behaviour group

The behaviour group is run by Clinical Psychologists for parents/carers whose child with additional needs has challenging behaviours. It aims to help parents understand their child’s behaviour and suggests strategies to change behaviours. 

Sleep Well

The Clinical Psychology team and specialist nurses at Cheyne also run ‘Sleep Well’ workshops for parents of children with additional needs who have difficulties sleeping. 

A member of the Cheyne team will refer you to these groups if it is appropriate. If you have any questions about these groups you can contact the Psychology team on

Other services at the Cheyne Child Development Service

Please discuss with a member of the assessment team if you would like to discuss a referral to another service within the Cheyne Child Development Service.

Occupational Therapy  

The Occupational Therapy Team works collaboratively with children, their families and school communities to enable children to achieve their potential within their occupations at school, home, and the wider community. Our Occupational Therapists (OTs) may see a child or young person who requires help with: developing the skills needed to participate in self-care tasks (e.g. tooth brushing, toileting, washing, dressing, eating); participating in learning tasks (e.g. writing, using scissors, selecting and organising tools/belongings); positioning and posture to support participation in everyday activities; accessing play/leisure resources and physical access - this may include supporting a child with motor coordination difficulties. 

The OT team also run a regular workshop on understanding sensory processing in ASD. 

  • T: 0208 102 4008

Speech and Language Therapy  

Paediatric Speech and Language Therapists work with children with a wide range of speech, language and communication needs. Speech and Language therapy offered at Cheyne is for pre-school children and by referral only.

Speech and Language therapy for school aged children is accessed via a referral from your GP or your child’s school. 

Clinical Psychology

The Clinical Psychology team offer mainly group support and consultations with school/nursery staff and other professionals for a range of difficulties (e.g. behaviour, emotional development sleep and feeding). 

Local services: Hammersmith & Fulham 

The main location to find out what is available in your local area is the SEND (Special Educational Needs) ‘Local Offer’.

H&F: SEND Local Offer

Or search “Local Offer” and your local area. Each borough has a specific Autism page.

EarlyBird and EarlyBird Plus

EarlyBird (under five years) and EarlyBird Plus (ages four-nine) are additional support programmes for parents and carers, offering advice and guidance on strategies and approaches for dealing with young autistic children. Both programmes work on understanding autism, building confidence to encourage interaction and communication and analysing and managing behaviour.

The following service runs these courses, please contact them for further details:

  • Hammersmith and Fulham INSPIRE team: 0208 753 1021

The National Autistic Society West London Branch 

The West London Branch of the National Autistic Society was set up by a group of local parents in 2012. We are a purely voluntary group that campaigns for the boroughs of Westminster, Hammersmith & Fulham and Kensington & Chelsea. Anyone from West London can join us as a member and attend our events and activities. We have various social events lined up and we need you to volunteer with us! If you are interested, please get in contact.

For information about Autism, Activities we run and activities by other organisations, have a look at our website, social media platforms or send us an email, become a member and receive information.

Child and Adolescent Mental Health Service (CAMHS)

CAMHS provides a comprehensive range of targeted and specialist community mental health assessments and treatments for children and young people with moderate to severe mental health difficulties, learning disabilities, neurodevelopmental difficulties (such as ASD) and Attention Deficit Hyperactivity Disorder.

Psychological Support for Parents (adults 18+)

Brief, talking therapies and counselling services are suitable for people experiencing feelings of low mood, anxiety and/or particular fears or problems coping with daily life and relationships. Hammersmith and Fulham offer a free, confidential NHS service which provides psychological treatment. You can be referred via your GP, other health professionals or by self-referral

Stephen Wiltshire Centre

The Stephen Wiltshire Centre is a purpose-built specialist centre for children with special educational needs and/or disabilities (SEND) and their families, who live in Hammersmith & Fulham. The Stephen Wiltshire Centre operates a duty phone line between the hours of 9am - 4pm, Monday to Friday. They offer advice, post diagnostic support from integrated key workers and stay and play sessions.  

Parent’s active

‘We endeavour to keep parents informed through coffee mornings, events, website, training, workshops and a newsletter. Our mission is to provide a support network for parents to gain and share information, make new friends and most importantly realise that they are not alone. We have a membership of more than 400 parents’.

West London Action for Children

West London Action for Children offers a range of counselling and therapy services for children and families in need who are based in the London boroughs of Hammersmith & Fulham and Kensington & Chelsea. We support families under stress to develop their confidence and skills to cope with the ordinary and extraordinary challenges of family life. Our services are primarily available to those on Income Support or receiving Tax Credits. 

H&F Independent Advice and Support Service

Advice and support relating to Special Educational Needs including getting support at school, EHC Assessment and Plans, and general SEN advice, information and/support.

INSPIRE-ASD Outreach service

The Inclusion and Specialist Intervention Outreach Service provides specialist interventions to inspire Children and Young People with SEND to transform their lives and achieve the best outcomes. Specialist interventions, assessment, teaching and advice are provided specifically for children and young people with hearing impairment, visual impairment, Autistic Spectrum Disorder and Dyslexia as well as advice for young children with significant developmental delay.

National Organisations 

NAS (National Autistic Society)

The leading UK charity for people with Autism and their families. They provide information, support and pioneering services, and campaign for a better world for autistic people.

Ambitious about Autism

The national charity for children and young people with autism. Their parent hub provides practical information and resources about ASD. They also have an online community for adults with autism, parents and professionals.

The Autism Education Trust

Provides information and support relating to young people and their access to education. They also have specific information for children “child zone” and young people “the den”.

Scope

Provide support and information for people who have a physical impairment, learning disability or any other condition.

The Challenging Behaviour Foundation

A charity for people with severe learning disabilities and challenging behaviour. They offer information about challenging behaviour both online and over the phone or email.

Autism Links

Website providing practical information about services and resources for children and adults living with autism

Contact a family

They offer practical information and resources about support for families who have a child with a disability

Sibs

Support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.

Cerebra

This is a great website with lots of leaflets to download. 

Independent Parental Special - Education Advice

A registered charity that offers free and independent legally based information, advice and support to help get the right education for children with special educational needs (SEN). They provide support with Local Authorities’ legal duties to assess and provide for children with special educational needs.

Understood

This website holds a compilation of different resources and information about attention and learning issues, school and learning, friends and feelings and family relationships. They provide customised advice and interactive tools based on a child’s issues and their conditions. 

The Autism Directory

Created by parents, carers and professionals the Autism Directory signposts people to the wealth of information, support groups, autism friendly business and useful information. 

Eric

Eric is the children’s bowel and bladder charity and offers advice, parent workshops and a helpline to support toileting in children. 

  • T: 0808 169 9949 

Further Healthcare services 

Dietetics

The paediatric dietitians provide full nutritional assessment, diagnosis and advice on how best to meet the nutritional requirements for individual patients. Children and young people with diagnosed conditions- especially for those needing additional nutritional supplementation or advice.

Referral can be requested from your child’s GP, paediatrician or school nurse 

Dentistry

The specialist community dental service provides care for children and young people who are unable to be treated in an ordinary dental practice. To access this they should be  registered with, a GP in Barnet, Hammersmith and Fulham, Kensington and Chelsea, and Westminster,  referral by their local dentist, GP, or other healthcare professional..

Education services 

Advice and support to parents/carers

Once your child has completed their assessment at Cheyne, we recommend that you arrange an appointment with the Special Educational Needs Coordinator (SENDCo) at your child’s school.

You might want to ask school the following questions:

  • What progress is your child making?
  • What support is being put in place for your child?
  • Is your child on the school SEN support register?
  • Is your child already known to the H&F Inspire Autism Outreach Team? If not, are school able to make a referral?
  • How will your child’s progress be monitored/what are their targets?
  • What will be done if your child does not make progress?  

State schools receive some funding to support children with special educational needs. For many children, the additional support offered by schools will be sufficient to meet their needs. It is important to note that not all children who receive a diagnosis of Autism Spectrum Disorder will need an Education and Health Care Plan (EHCP).  

There are many support strategies that schools and nurseries can put in place to support a child with ASD. Schools have access to educational psychology and autism outreach teachers, who can also speak to parents.

Schools should use this advice to implement an ‘Assess Plan Do Review’ cycle of planning and intervention for your child using their SEN resources. If, after this process has been running for some time, your child has not made adequate progress, you and the school may decide to apply for an EHCP.

What is an Education, Health and Care Plan? 

Education, health and care (EHC) plans look at your child’s needs and bring together education, health and care services to achieve agreed outcomes. The focus is very much on what is important for children and young people from birth to 25 years old. As parents/carers, you are much more involved in the process of agreeing your child’s plan. 

An Education Health and Care needs assessment can be requested by anyone, provided the parents agree and give their permission, or, in the case of young people who are over the age of 16, permission from the young person themselves.

Schools, colleges and other services and agencies provide evidence of the child's needs and progress, which will help to decide whether or not the assessment should proceed. Evidence should demonstrate that the child’s special educational needs:

  • Are significant and complex 
  • Have not responded to relevant and purposeful measures put in place by the school and supporting outside agencies 
  • May call for support that cannot usually be provided by a mainstream school from its own resources  

If the local authority agrees to proceed with an Education Health and Care (EHC) needs assessment, this takes up to five months to complete, from the time of the initial request. During this time the local authority gathers information from parents/carers and all education professionals, therapists and doctors involved in your child’s care. This information will be used to draw up a plan which states what the nursery, school, or college, along with other services or agencies can do to help your child.

Educational Psychology Team 

Educational Psychologists work with young people (0-25), their schools/educational placements and families in order to help reduce barriers to learning. If you are worried about your child’s progress you should speak to the school SENCo in the first instance and ask them if they feel a referral to educational psychology might be appropriate. Educational psychologists always seek parental permission before working with a child and value parental input as ‘experts’ in their knowledge of their child.

H&F Inspire Team

In Hammersmith & Fulham, schools can access outreach support from the Inclusion and Specialist Intervention Outreach Service (Inspire). The Inspire Team provide training and support for schools, offer some individual support to young people in schools, and run parent training courses and drop-in sessions.

Further information can be found at: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=PHYzuYXNdBs&localofferchannel=0

H&F Insights Information and Advice Support Service

The H&F Insights Information and Advice Support Service (IASS) was formerly known as the Hammersmith & Fulham Parent Partnership Services (PPS). The IASS provides independent advice and support to parents and carers of children and young people with special educational needs. This may include getting support at school, EHC Assessment and Plans, and general SEN advice, information and/support.

The IASS promotes good working relationships between parents, nurseries, schools, colleges and other educational settings and the Local Authority. Their service includes:

  • A confidential helpline
  • Parent support in preparing for and attending meetings
  • Help in filling in forms and writing letters/reports
  • Support for parents/carers in resolving disagreements with school and the LEA
  • Signposting to other statutory and voluntary services
  • Links to local parent support groups and forums
  • Ensuring that parents/carers views help inform and influence local policy/practice
  • Training opportunities for parents and professionals
  • Work with families of excluded pupils

Contact information:

  • T: 0208 840 9099
  • E: wlpp@insightsesc.co.uk
  • W: https://insightsesc.co.uk/iass/
  • Insights IASS. First Floor, 1 Craven Road, Ealing, London, W5 2UA, T: 0208 840 9099  

Financial Support 

Disability Living Allowance 

On top of any normal welfare benefits, you may be eligible to apply for Disability Living Allowance (which is paid for the child) and Carers Allowance. Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:

  • Is under 16
  • Has difficulties  or needs much more looking after than a child of the same age who does not have a disability
  • The allowance is non means tested, meaning this is awarded regardless of parental income 

You can request the benefit forms by calling: T: 0845 7123 456 

Tax credits

Child Tax credits and Working Tax credits are available for those working but earning less than £16,000 per year per household. There is extra allowance made also in the Child Tax Credit for a disabled child, and more for a severely disabled child. 

  • T: 0845 3003900

The Family Fund                

Financed by government and administered by the Rowntree Memorial Trust for children with a severe disability (and they include autism in this category). There is no formal means test to obtain funds from the Family Fund, though you are less likely to obtain help if your family income is over £23,000 per year or you have savings of over £8000. They have funding for over 80,000 families, so it is well worth applying. You can apply once a year every year for things such as a holiday, outings, transport costs etc. 

  • T: 0845 130 4542                                         

Cerebra

This is a small grant scheme offering practical assistance to improve the quality of life of children and young people to age 16 affected by neurological conditions. Examples of grants made are: 

Touchscreen computers, holidays (up to £500), specialist car seats, approved therapies, trampoline, sensory toys, specialist cycles.

Disabled Parking Badges

You will need to fill in a Blue Badge application form. Please access the Local offer for information.

Recreational Activities  

Cinema

The Vue, Odeon and PictureHouse cinemas do autism friendly screenings for families and schools. Contact them directly for details.

Websites:

Football Clubs 

Football clubs offer some disability football programmes.

Gambado

SEN & Autism Friendly FREE Soft Play Sessions at Gambado - Sessions available in Chelsea,

Otakar Kraus Music Trust

This Music trust provides opportunities for young people with special needs 

Science Museum ‘Early Birds’ 

Early Birds enables families with children who have an Autistic Spectrum Condition to come along and enjoy the Museum free from the busy general public.

Legoland

Allow people with DLA/diagnosis letter to skip the long queues when entering the park and going on rides. Other theme parks provide this service also.

Lion King

The Lyceum theatre provide autism friendly showings in the West End.

Other

  • Radar keys provide access to public disabled toilets. Cost= £4. Available at www.radar-shop.org.uk. Also available through HAFAD
  • Groups that provide free horse-riding therapy are listed through the following organisation: Riding for Disabled Association. www.rda.org.uk
  • Gatwick airport provide a sensory room whilst you are waiting at the airport and travelling support Accessibility | Gatwick Airport

Useful Reading and Websites

  • I AM SPECIAL by Peter Vermeulen - Introducing Children and Young People to their Autistic Spectrum Disorder
  • HOW TO LIVE WITH AUTISM AND ASPERGER SYNDROME by Chris Williams and Barry Wright - Practical Strategies for Parents and Professionals
  • THE SURVIVAL GUIDE FOR KIDS WITH AUTISM SPECTRUM DISORDERS by Elizabeth Verdick and Elizabeth Reeve
  • HELPING YOUNG CHILDREN WITH AUTISM TO LEARN by Liz Hannah - A practical guide for parents and staff in mainstream schools and nurseries
  • AUTISM: TALKING ABOUT A DIAGNOSIS by Rachel Pike - A guide for parents and carers of children with an autism spectrum disorder
  • SENSORY AND MOTOR STRATEGIES by Corinna Laurie - Practical ways to help children and young people on the autism spectrum learn and achieve
  • AUTISM: UNDERSTANDING AND MANAGING ANGER by Andrew Powell
  • IT CAN GET BETTER by Paul Dickinson and Liz Hannah - Dealing with common behaviour problems in young children with autism
  • I HAVE AUTISM... WHAT'S THAT? by Kate Doherty, Paddy McNally and Eileen Sherrard
  • A useful short film ‘Amazing Things Happen’ explains autism in a clear and positive way: https://www.youtube.com/channel/UCZYtA26fbFCYIecm-WsEaeQ
  • https://www.autismeducationtrust.org.uk/kids-zone/ - an online resource for children on the autism spectrum 
  • The Den - Autism Education Trust - an online resource for teens on the autism spectrum 

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