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Cheyne Child Development Support Leaflet - For parents who have a child with a diagnosis of Autism Spectrum Disorder: pre-school age

What is Autism?

We all have our own set of strengths and difficulties. Autism Spectrum Disorder (ASD) describes a particular pattern of difficulties across three main areas.

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

Your child 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: Click here

Dealing with 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 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.

Local Parent Groups for children with disabilities can be helpful- they offer access to support groups and additional support.

What happens next?

Consistent with national guidelines, after diagnosis we offer a follow-up appointment with a Speech and Language Therapist and specialist nurse from the Cheyne Child Development service. You will also be offered follow up support from your child’ speech therapist.

We will discuss the benefits of sharing your child’s reports with their nursery or school normally through their SENDCO teacher –outlining their individual strengths and any need for additional support.

There can be a lot to take following your child’s assessment and 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.

Groups at the Cheyne CD

Raising Healthy Eaters

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. Contact: 0203 315 3196

The Behaviour Group

Ran by Clinical Psychologists for parents/carers whose child has some challenging behaviours. It aims to help parents understand their child’s behaviour and suggests strategies to change behaviours. Contact: 0203 315 3196

Westminster and Kensington and Chelsea parents - PACT-Understanding Autism Group 

Parent Workshops for Kensington and Chelsea, and Westminster: for parents/carers whose child under the age of 5 years has received a diagnosis of autism spectrum disorder. To access the Autism and Early Years Intervention Team, Contact 0207 854 5885

Hammersmith and Fulham parents - Understanding Autism workshops 

Online Parent workshops with a Speech and Language Therapist and Specialist teacher from Hammersmith & Fulham + Specialist Nurses and support staff from the Stephen Wiltshire Centre. For your invitation, email Simran Sylvan:  or call: 07393 802 025 to book a place.

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. To access, contact: 0203 315 3196

Before any referral to sleep clinic is accepted parents are advised to access helpful advice: National Autistic Society: Click here

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

Occupational therapy service for children promotes engagement, performance and independence in meaningful, daily activities. For pre-school children support is normally offered when children are delayed in reaching expected self-care skills, with delay identified in 2 age-appropriate functional concerns  – for example at aged 3-5 with concerns of feeding and toileting.

Referrals can be discussed with your child’s community paediatrician, speech therapist, or Cheyne specialist nursing team 

For more information see www.healthmatters.clch.nhs.uk/occupational-therapy-children

The OT team run regular workshop on understanding sensory processing in ASD. Please contact: 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. Early years speech therapy is for pre-school children and by referral only.  They offer individual and group therapy and can also support your child with offering advice to nursery. SLT for school aged children is accessed via your child’s school when they access reception class.

Clinical Psychology

The Clinical Psychology team offer group support, for a range of difficulties (e.g. behaviour, emotional development sleep and feeding).Telephone: to access groups 0203 315 3196

Music Therapy

Music therapy uses shared music making as a way of supporting children who may have communication, social, physical or emotional difficulties. Referral to music therapy can be made for children up to the age of 5 years and 11 months. 

For referral contact Cheyne specialist nurses: 

SEND Local Offer 

The Local Offer aims to bring together useful information across education, health and social care within one website. You can find information, advice and guidance and a range of local service providers who support children and young people with Special Educational Needs and Disabilities (SEND)

Local Services: Hammersmith & Fulham

For more information search “SEND Local Offer LBHF Autism Infographic” in your internet search engine.

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. They operate a duty phone line between 9am-4pm, Monday- Friday, for enquiries of accessing support, including stay and play sessions or short break access.

They also offer short term support from integrated keyworkers for children aged 0-5 years To contact the duty line, please call 0208 753 4443

Parents active

Is a local parent led organisation supporting parents of children and young people with disability. This includes a support network for parents to gain and share information, make new friends and most importantly realise that they are not alone. Parents are kept informed through coffee mornings, events, website, training, workshops and newsletters

Parent Coffee Mornings

For parents of children and young people with ASD.

Let’s Unite for Autism, Hammersmith and Fulham

This is a Local parent led organisation: provision of advice, guidance, support and information to those affected by Autism.

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.

Local Services: Kensington & Chelsea

For more information search “SEND Local Offer RBKC Autism Zone” in your internet search engine.

Kensington and Chelsea Social Care Disabled Children’s Service 

Support from Kensington and Chelsea Disabled Children’s Service is provided by the Early Intervention & Support Team  

The Early Intervention & Support Team 

This team will support families with children aged 0- their 5th birthday.

  • To receive support from this team the child must have a Diagnosis, or have been referred to the Child Development clinics with a likelihood of a Diagnosis.
  • Once the referral has been accepted, the Practitioner will visit to look at the family’s needs.
  • These include Autism Spectrum Disorder awareness, Fussy Eating support, Sleep Advice, Health and Safety in the home, support with accessing nursery and school and many more.
  • To access the team contact 0207 598 4921  or Cheyne specialist nursing team email or call 0203 315 6470

St Quintin’s Disabled Children’s Centre

A specialist play service for children with a disability. This service includes play schemes, stay and play for families, summer holidays and family day trips.

Please call 0208 969 2570 or contact the Early Intervention and Support team.

Full of Life

Full of life provides free practical independent advice and support to parents and cares including benefits and advice support with accessing information on a range of services including access to education advice and access to parent carer groups. 

Autism and Early Years Intervention Team

The Specialist Service supports children and young people with ASD within the school setting. The team provides regular meetings with parents to discuss strategies and progress, resources for use at home where appropriate, links with other support group and access to National Autistic Society Early Bird program to book onto a course, please contact Clare Sumpter by emailing  or contact 0207 854 5885, you can also visit their website: Click here

Tell it Parents Network

Tell It Parents Network runs a weekly drop in and 1:1 support where parents can access advice and support with a range of issues that impact on parenthood.

Local Services: Westminster 

For more info search “SEND Local Offer Westminster” in your internet search engine

Support from Westminster Disabled Children’s Service is provided by the Early Intervention & Support Team.

The Early Intervention & Support Team (Westminster)

  • This team will support families with children aged 0 to 5th birthday.
  • To receive support from this team the child must have a diagnosis, or have been referred to the Child Development clinics with a likelihood of a diagnosis.
  • Once the referral has been accepted, the Practitioner will visit to look at the family’s needs.
  • They will have a range of Interventions to offer to the family. These can include Fussy Eating support, Sleep and behavioural advice, and  Health and Safety in the home /with accessing nursery and school and many more
  • To access the team contact Cheyne Specialist nursing team 0203 315 6470 or email

Tresham Family Centre

Including a new sensory room and soft play area:

27 Tresham Crescent, London NW8 8TW

See local offer SEND for access or contact 0207 641 1553 or the Early Support and Intervention service.

Make it Happen 

This is a local group for parents and is supported by volunteers working together to help improve services in Westminster.

All our members have an understanding of different forms of care within a wide range of disabilities and offer advice to parent and access to parent groups and news letters to help keep parents informed of local services. 

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.  Anyone from West London can join and attend events and activities.

For information about Autism, Activities have a look at our website, social media platforms or send an email, become a member and receive information. 

EarlyBird Course 

A free three-month programme for Parents/Carers of young children (2 years to 5 years) with Autism spectrum disorder; offering advice and guidance on strategies and approaches for dealing with young autistic children.

The following services run these courses. Please contact them for further details:

  • Westminster Special Schools Training and Outreach Service: 020 7641 5825
  • Autism and Early Years Intervention Team: 0207 854 5885
  • The Tresham Centre: 0207 641 5095
  • Bessborough Family Hub: 0207 598 4917

Westminster Information Advice Support Service (IASS)

Free confidential service is available to parents, children and young people. They can help by providing access to impartial guidance and support on matters relating to the law, local policy and practice, the local offer and Education, Health and Care (EHC) assessments.  

Home Start

Home Start supports families living in Westminster and Kensington and Chelsea, providing there is at least one child under five-years, or a baby on the way. Through a network of trained and DBS checked volunteers, they support hundreds of parents and children who are experiencing difficulties of one kind or another.

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”.

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.

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 other useful information. 

Further Healthcare services 

Healthcare services are made up of a range of professionals and these are all described below:

Health Visitors

Your Health Visitor will receive a copy of your child’s assessment report and will continue to support your child’s health needs until they reach the age of 5 years –helping with growth monitoring, immunisation, diet, and sleep and toileting advice.

If your child is over the age of 3 and has a diagnosis if autism and still needs nappies you can get them free through your health visitor. For families having difficulty contacting their school nurse of Health visitor then support can be accessed from the Cheyne specialist nurse on contact number 0203 315 6470 email address

Toilet Training Advice 

Teaching your child to use the toilet correctly can be a difficult task, whether they are on the autism spectrum or not. But if your child is autistic, the process of developing a toilet routine can take longer, and involve its own particular challenges, The guide below provides some useful steps that will hopefully make your toilet training a success:

  • National Autistic society 

Toilet Training a Guide for Parents and Carers: www.autism.org.uk/advice-and-guidance/topics/behaviour/toileting/parents

  • ERIC

The children’s bowel and bladder charity and offers advice, parent workshops and a helpline to support toileting in children. Contact: 0808 169 9949

Dieticians and Fussy Eating Concerns 

Many children with autism can have fussy eating; you might find helpful advice from the following website: Click here

Dieticians work with children and families to provide nutritional assessment, and advice on how to best meet nutritional requirements for individual children. Referral can be requested from your child’s GP, paediatrician, Health visitor or Cheyne Specialist nursing team or contact number 0203 315 6470 

Dentists

The specialist community dental service provides care for children 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, or Westminster.

Referrals can be requested by your local dentist, GP, or other healthcare professionals including paediatrician, health visitor or Cheyne specialist nursing team, or contact number 0203 315 6470

Education Services

Health Early Notification

Following assessment a key professional within the team will send a notification to your local (SEND) authority. This is required by law, and is called a Health Early Notification. This should help to support any additional need for educational support your child might need in order to help them to access education. You will be given an information sheet explaining this following your child’s diagnosis.

Nursery and School Placement 

  • Most children with Autism will attend mainstream nurseries and schools
  • The best school or educational setting for your child will depend on their needs-and will take into consideration your choice.
  • Some children may benefit from a more specialist setting, nursery or school, or a special resource base in a mainstream school. You may wish to consider looking at mainstream and specialist placement when applying for school reception age placements. This will help you make an informed choice, see Local offer SEND for details of mainstream and specialist placement.
  • You might choose for your child to have an additional year in nursery dependent on their needs and readiness for school reception class. You can discuss this with school and nursery SENDCO teachers. Your child’s assessment and relevant documentation should be helpful by advising on any additional support they might need.
  • 2 year offer – Children with autism will qualify for 15 hours free nursery placement :for further information: https://www.gov.uk/help-with-childcare-costs/free-childcare-2-year-olds see local SEND offer for list of available  nurseries
  • 3-4 year offer: All parents/carers with a child aged 3-4 years are entitled to receive 15 hours of free early education in a nursery or pre-school setting which can be accessed for 38 weeks of the year;  see your local offer for list of local nurseries
  • School placement – see local SEND offer for list of local schools –including mainstream and specialist –you will need to apply to your local education department by15th January to access placement for September.
  • All nurseries and pre-schools must appoint a Special Educational Need and/or Disability Coordinator (SENDCO). This is a specialist nursery practitioner or teacher who holds responsibility for supporting children with SEND.
  • Discussion with the nursery of school SENDCO teacher will be helpful to explain your child’s diagnosis, their individual needs and your wishes for education. They will be well placed to advise you on the next steps for any additional support your child will need -whilst taking into consideration your child’s Autism diagnosis and their progress in nursery or school.
  • Some children who need a high level of support so that they can access education will need an Education and health care ( EHCP)  plan, which looks at your child’s needs and brings together education, health and care services to achieve agreed outcomes ( see your local SEND offer for more information).
  • The need for an EHCP plan will be dependent on the support provided by the individual nursery, or school and the needs for your child. Many children with autism are provided with additional  support from schools without EHCP plans  as schools and nurseries already have additional funding.
  • If your child needs a more specialist setting, they will likely need an Education Health and Care Plan (EHCP).
  • The assessment for the EHCP Plan will include consideration of  the most suitable special school or specialist resource base for  your child:  see local SEND offer for further details
  • When considering school application  you might benefit from speaking with the SENDCO teacher to discuss the available support within the school -for example some schools provide speech therapy without the need of EHCP application
  • Reports from your Child’s assessments and sharing these will help nursery and school staff to better understand and support your child. 

Parent Partnership

Parent Partnership Services (PPS) offer advice and support to parents and carers of children and young people with special educational needs. They are statutory services, which mean there has to be one in every local authority. They are free, impartial and confidential services. The sort of things they do include running a confidential helpline.

  • Offer support in preparing for and attending meetings
  • Help in filling in forms and writing letters/reports
  • Support parents/carers in resolving disagreements with school and the LEA
  • Signpost to other statutory and voluntary services
  • Link to local parent support groups and forums
  • Ensure that parents/carers views help inform and influence local policy and practice
  • Offer training opportunities for parents and professionals
  • Work with families of excluded pupils

Your local Parent Partnership service:

  • Hammersmith & Fulham – Insights IASS: First Floor, 1 Craven Road, Ealing, London, W5 2UA, Tel: 0208 840 9099
  • Kensington & Chelsea - Full of Life, Kensal House Annex, 379 Ladbroke Grove, London, W10 5BQ, Tel: 0208 962 9994
  • Westminster - Westminster City Council, Children and Young People, 1st Floor, 215 Lisson Grove, London, NW8 8LF, Tel: 0207 641 5355

Financial Support

Disability Living Allowance (DLA)

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
  • Use the link : www.gov.uk/disability-living-allowance-children for more information: You can request the benefit forms by calling Tel: 0845 7123 45

Contact a Family

Provides support, advice and information for families with disabled children, including benefits advice: Helpline: 0808 808 3555 : or access www.contact.org.uk

Local Support with benefits advice and completing DLA applications can be requested from:

  • Hammersmith and Fulham:  : 0203 080 0381
  • Kensington and Chelsea: Full of Life: 0208 962 9952
  • Westminster Citizen’s Advice Bureau (CAB) can help you with your application for benefits. You can call Westminster Citizen's Advice on 0300 330 1191

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. Tel: 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: Touch screen 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 contact your local council or see your SEND local offer for further details or access advice from CONTACT organisation: www.contact.org.uk

Autism Alert Card website: ARGHCard  arghighland.co.uk

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, Beckenham and Watford.

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

Groups that provide free horse-riding therapy are listed through the following organisation: Riding for Disabled Association. www.rda.org.uk

Useful Reading and Websites

Contact Us

Cheyne Child Development Service

Cheyne Pathway Co-ordinator: 0203 315 3121

Specialist Nurses:

Cheyne Child Development Service: https://www.chelwest.nhs.uk/services/childrens-services/community-services/cheyne-child-development-service

NAS_National Autistic Society: https://www.autism.org.uk/