What is the ASD Pathway?

The ASD Pathway involves assessment, diagnosis, support and intervention for children referred to the Child Development Service who present with social communication difficulties. We hope to gain an understanding of your child’s strengths and difficulties across three areas: social interaction, social communication and social imagination. Following the assessment, we will decide if a diagnosis of Autism Spectrum Disorder (ASD) will be useful in explaining your child’s pattern of difficulties.

What is Autism Spectrum Disorder (ASD)?

ASD is a developmental disability that affects how people perceive the world and interact with others. Individuals with ASD have difficulties with social interaction, social communication and social imagination. For more information on ASD visit the National Autistic Society www.autism.org.uk

How long will the assessment take?

It is difficult to give an exact time because each child requires a different combination of assessment appointments. Please contact the ASD coordinator for further information on your child’s waiting time.

Why do I need to give consent?

We require consent to ensure that you understand and are happy with why we are assessing your child and what will happen during, and after, the assessment. We also seek consent for us to gain and share information with other agencies (e.g. school) that support you and your child, so we can understand your child’s strengths and difficulties across different contexts. If you are unsure about giving consent, please contact us to discuss this further as this may impact on whether the assessment goes ahead.

What assessments will be completed on the ASD Pathway?

Families may be invited to a number of different appointments. These are detailed below. Please note that not all assessments will be required. Your child’s assessment will vary depending on their individual needs. We may also liaise with your child’s school/nursery to gain further information:

• Developmental history: A structured interview with parents about your child asking questions about their birth, development and medical history focussing on communication and social interaction.
• Structured Diagnostic Interview: A structured interview with parents which ask specific questions about your child’s social communication skills.
• Cognitive Assessment: A standardised assessment of your child’s thinking and learning skills.
• Speech and Language Therapy (SLT) assessment: An assessment of your child’s speech and language skills with a Speech and Language Therapist through a variety of tasks and activities.
• Autistic Diagnostic Observation Schedule (ADOS): A structured play and question-based assessment completed with your child.
• School/ Nursery Questionnaires: To gain additional information about your child within the school/nursery context we ask a member of staff who knows your child well to complete a series of questionnaires about your child’s social communication, learning and behaviour.
• School Observation: An observation of your child within the classroom setting to observe their social communication with peers. We also meet with their class teacher/familiar adult to complete a questionnaire to gain an in-depth understanding of their social communication within the school context. 

Who is involved in assessing my child on the ASD Pathway?

• Paediatrician: A team of community paediatricians with a special interest in Social Communication Disorders
• Clinical Psychology: A team of Clinical Psychologists and an Assistant Psychologist who support the assessment of social communication difficulties for school-age children and offer post- diagnostic support.
• Speech and Language therapist: A team of specialist Speech and Language Therapists experienced in the assessment of social communication difficulties.

Are any other agencies involved?

We will normally contact your child's school/ nursery and any other professionals involved in your child’s care. This helps us to get a fuller understanding of their strengths and difficulties across different settings.

Sometimes we will ask one of the specialist teachers at the Kensington and Chelsea Early Years and Autism Outreach team or the Westminster Outreach team to liaise with school on our behalf.

Who should I contact for further information?

The ASD Pathway Coordinator is the main point of contact for all queries regarding appointment times, cancellations etc.

• Woodfield Road ASD Coordinator: 0207 266 8776
• Cheyne ASD Coordinator: 020 3315 3121

What to expect when your child is referred for an ASD assessment:

Contact Us:

Cheyne Child Development Service
Chelsea and Westminster Hospital
Doughty House
369 Fulham Road
London
SW10 9NH

Main Reception: 020 3315 6488
ASD Coordinator: 020 3315 3153

• Cheyne Child Development Service page

Parent Carer Forums:

• Kensington & Chelsea: www.fulloflifekc.com
• Westminster: www.wppg.org.uk/
• Hammersmith & Fulham: www.parentsactive.org.uk

Local offer information:

All councils are now required to have a Local Offer on their website. This provides information on the local services and support available to children and young people with special educational needs and/or disabilities (SEND) aged 0-25 and their families: 

• Kensington & Chelsea: www.rbkc.gov.uk/localoffer
• Westminster: www.localoffer.westminster.gov.uk
• Hammersmith & Fulham: www.lbhf.gov.uk/localoffer

If you live outside of these areas, you can find your area’s Local Offer on your council’s website.

Who’s Who

Clinical Nurse Specialist

The specialist nursing team have experience of community paediatric nursing, and health visiting, this includes children with special needs. They will work together with your family health visitor or school nurse to help you access the community services and support for your child. They mainly work with children aged 0–6 although are available for advise with older children.

They can offer telephone advice and clinic—email ccds.cnsteam@nhs.net or call 020 3315 6470.

Community Paediatrician

Paediatricians are doctors who have specialised in Children’s Medicine. Community Paediatricians have specialised in the care assessment and diagnosis of Children with developmental problems or difficulties.

Physiotherapist

Physiotherapists assess and treat children who have delay or difficulty with their motor skills and independence moving around (on the floor, sitting, standing, walking and doing more advanced skills like running and jumping). They have expertise in:

• Typical and atypical development of motor skills
• How motor skills are linked to the child’s play, cognition, communication, sensory and other skills
• Assessing strength, mobility, balance and coordination

The physiotherapist will assess your child by:

• asking about your concerns and how your child moves at home and outside
• observing your child playing, they may ask your child to carry out some specific activities
• structured assessments

 Following assessment, appropriate therapy input, if needed, will be discussed and planned with you.

Music Therapist

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.

Speech and Language Therapist

The Speech and Language Therapist looks at your child’s communication including;

• Understanding
• Play and Social Development
• All aspects of communication including looking, pointing., gestures as well as speech

The speech and language therapist will do this by asking how your child communicates with you and by observing their play. They may ask your child to carry out some specific activities using familiar toys and pictures.

Following assessment, appropriate therapy input, if needed, will be discussed and planned with you;

Speech and language therapy provide a service to pre-school children with speech, language, communication and/or swallowing difficulties.

If your child is school-aged please speak to the Special Educational Needs Coordinator (SENCO) at your child's school about supporting your child's language and communication skills.

Clinical Psychologist

The Psychology team at Cheyne are part of the multidisciplinary assessments and provide support and advice to children, young people and their families.

This may involve:

• Direct assessment of development and learning (cognitive) abilities.
• Discussion and advice regarding your child’s emotional, social and behavioural development.
• Discussion and advice regarding family relationships.

The team use a range of assessment methods such as play, conversation, structured assessments, observations (in clinic and at school) and questionnaires.

In terms of support following assessment, the Clinical Psychology team offer groups for parents, consultation to staff working with children and short-term individual interventions. We typically offer support in relation to understanding diagnosis, behaviour, emotional development, sleep and feeding.

Occupational Therapist

Occupational therapists assess and treat children who have delay or difficulties that effect their ability to independently achieve everyday occupational activities. Occupational therapist have expertise in;

• Sensory development
• Motor (movement) skills
• Cognitive (learning) skills
• Psychological and emotional areas
• Social skills
• Play development

The occupational therapist will assess your child by;

• Discussing your concerns
• Observing play and activity
• Using standard assessments

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.

Additional Information

Parent forums are parent led organisations that provide information and support to families who have a child/young person who has special educational needs and /or Disability. This includes children referred to the Child development service pre and post diagnosis.

• Hammersmith and Fulham: Parents Active
• Kensington and Chelsea: Full of Life
• Westminster: Make it Happen

SEND Local Authority Offer

All councils now have to provide information on services and support available to children and young people with special educational needs and/or disabilities (SEND) aged 0-25 via the local offer website:

• Royal Borough of Kensington and Chelsea
• London Borough of Hammersmith and Fulham
• Westminster City Council

Cheyne Child Development Service

Our service provides specialist assessment and healthcare therapy for children significant developmental needs, including those who are likely to have difficulty accessing learning.

The service is committed to a child and family centred approach, and is organised into two clinics:

The Cheyne Child Development Service

Chelsea and Westminster Hospital
Doughty House
369 Fulham Road
London
SW10 9NH

T: 020 3315 6488

Parkview Health and Wellbeing Centre

First Floor
Cranston Court
56 Bloemfontein Road
London
W12 7FC

T: 020 3704 6060

For questions about your appointment or waiting time: contact the appointments coordinator on 020 3315 3121. For questions about the assessment, what to tell your child and resources while you wait contact the reception on 020 3315 6488.

Why is the medical necessary?

A medical examination has been requested as there have been concerns about the welfare of your child.

What happens at the Child Protection Medical?

• The doctor, with attending social worker will see you and your child in the Children’s Outpatient’s department. The doctor may want to speak to the social worker alone at the beginning of the appointment.
• The doctor will then have a discussion with you about your child's current health, past medical history and development, and will conduct an examination of your child.
• The examination will be carried out by a children’s doctor (Paediatrician) who has experience in conducting such assessments
• The doctor will explain to you and your child what will happen.
• The entire assessment should take around 1 to 1½ hours, but may be longer if we need to do assessments for more than one child.

Discussions

As the doctor wants to know about the overall health of your child, you will be asked about:

• Any illnesses or accidents your child has had
• Their birth history
• Development
• Immunisations
• Allergies
• Any medication
• Behaviour and progress at school
• Their day to day health
• Family history
• Social history

What happens during the examination?

• Your child will have a full physical examination which requires them to be fully undressed, in a respectful way. A chaperone will be present during the examination. If your child has any obvious injuries these will be noted, measured and drawn in the child’s records.
• The doctor may request for photographs to be taken of any marks or injuries seen on the child during the examination
• More specific investigations such as blood tests, scans or X-rays may need to be done. These will be explained and discussed with you.
• Your child will also be told that the examination can be stopped at any time if they/ you wish.

What happens next?

• The doctor will explain the findings of the assessment to you and your child (depending on your child’s age and understanding) as well as to the social worker.
• The doctor will advise you if any further medical treatment is necessary.
• The doctor will write a report which will be sent to your child's general practitioner, health visitor/school nurse, social worker and police officer (if police are involved).
• A copy of the report will also be made available to you.

What happens if you refuse to let your child be examined?

• Usually a child's parent is asked for consent for the examination. If consent is not given and if the social worker and/or police feel an examination is in your child's best interest, they may need to discuss this further with you.
• Sometimes young people may be able to give their own consent and the doctor will decide if this is possible.

We appreciate that having a child protection medical can be stressful for the family. It is important that:

• You understand what is happening.
• You and your child's views are listened to.
• If required, you will be advised on the best way you and your child can be supported during this time.

This information has been developed for parents and carers of children awaiting an multidisciplinary social communication assessment.

We have put together some information for you to support your child’s development while you wait.

There are many things that parents and carers can be doing to help support their child’s development and many resources available for children and their families.

Why your child has been accepted for a multidisciplinary social communication assessment

• Parents may have asked for the referral following concerns of their child’s development including  some  questioning if their child`s has autism
• Communication: Some children are referred because they have difficulties with their speech and language or other aspects of their communication. For example, they may be delayed in learning to speak, or may not use non-verbal gestures.
• Social Interaction: Children are often referred because of difficulties interacting with others. They may find it difficult to make friends or engage in social conversations, they may misunderstand social cues, or may appear uncomfortable, awkward or anxious in social situations.
• Other behaviours: Children may be referred because they show certain behaviours or interests. They may flap their hands, have unusual interests, or want to follow certain routines. Others have sensory difficulties and are over-sensitive to sounds, smells or textures.
• Concerns by professionals including speech therapists, health visitors, nursery and school staff –of your child’s delayed development and or related difficulties – sometimes questioning if these might be explained by a diagnosis of autism spectrum disorder

Expected outcomes of assessment 

• Getting a diagnosis for a child can be helpful, as it enables parents, as well as others, to understand and support your child better. 
• Documentation from your child’s assessment should include explanation of  your child’s individual strengths and difficulties
• The assessment will aim to advice on the support  your child might need to help them achieve their maximum potential
• Possible outcome of assessment might include a diagnosis of, Autism spectrum disorder ( ASD), developmental delay or a specific language difficulty
• You may find it helpful to read about autism spectrum disorder or other difficulties that your child is experiencing (see information section below). 

Signs of autism in children

NHS website: Click here

What is autism

National autistic society: Click here

Developmental language disorder

Developmental Language Disorder (ican.org.uk): Click here

What you can do whilst waiting for assessment

• Access a nursery or school place for your child
• Access support from speech and language therapy assessment – please see additional information under communication websites towards the end of this document 
• Encouraging you child’s play skills under the section on SEND/Health/Speech and Language therapy. You can also look at the website: https://hungrylittleminds.campaign.gov.uk/ which has lots of ideas/activities to support play and communication
• Accessing support for your child’s individual needs, including behaviour, sleep, feeding, and toileting, advice. We have included some advice in this booklet and would suggest for you to look at this before discussing any further support with the team at your child’s assessment
• Before your child’s assessment you will be offered contact from the specialist nursing team, if you need to contact them beforehand then please email ccds.cnsteam@nhs.net or call 0203 315 3121
• You can access support from your local Early intervention social care team, Cheyne specialist nurses can help with this: ccds.cnsteam@nhs.net or call 0203 315 6470

Benefits of nursery or school before assessment 

• Accessing nursery placement will help provide your child with additional play opportunities including access to indoor and outdoor activities.
• Nursery provides a routine and structure to your child’s day. This routine should help your child feel more confident and secure, in control of their feelings and is great preparation for school readiness.
• Attending nursery provides ongoing evidence of your child’s strengths, progress, and challenges in areas they may need support with.
• Nursery will help with your child’ social communication assessment –including additional reports on their progress and interaction with children of similar age.

Accessing nursery or school placements

• 2 year old offer: some children 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; you can also contact your Health visitor for support with this or the Cheyne specialist nursing team ccds.cnsteam@nhs.net)
• 3-4 year old offer: All parents / carers with a child aged 3-4 years are entitled to receive 15 hours (see local SEND offer for list of available nurseries)
• School placement: mainstream and specialist –you will need to apply to your local education department by the 15th January to access placement for the following September (see local SEND offer for list of available schools)

Additional support in nursery and school

If you are concerned about your child’s progress at nursery or school, speak to their nursery key worker, or class teacher or the school/ nursery Special Educational Needs Coordinator (SENDCO). You might want to ask them the following questions:

• What progress is your child making?
• What support is being put in place for your child?
• How will your child’s progress be monitored/what are their targets?
• What will be done if your child does not make progress?
• They may also be able to advise you on what approaches they have found useful at nursery or school, which you can try at home.
• If for some reason you or your child’s nursery or school , feels your child might need additional support to access education then you can access further information from the SEND local offer or Cheyne specialist nurse team, ccds.cnsteam@nhs.net

Support with behaviour

If you are struggling with your child’s behaviour or other specific issues: Speak to your Health visitor or contact the Cheyne specialist nursing team ccds.cnsteam@nhs.net. We would advise for:

• Discussion with your child’s speech therapist to further help guide you with helpful communication strategies for your individual child- including special play time advice
• Access advice from the following NHS and Family lives websites www.nhs.uk/conditions/baby/babys-development/behaviour/dealing-with-child-behaviour-problems/ and www.familylives.org.uk/advice/early-years-development/behaviour/
• Contact your local children’s centre or Health visitor for information on additional  parenting courses in your area

Sleep Advice 

We understand how difficult life can be when your child has a sleep issue and how there are many factors which can be can affect children’s sleep. We would advise you to access advice sleep guidance whilst you are waiting for assessment.

Further support can be discussed at your child’s assessment. Please see the following links:

• https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/sleep-hygiene-children/
• https://sleepcouncil.org.uk/advice-support/sleep-hub/family-matters/children-with-additional-needs/
• https://www.familylives.org.uk/advice/your-family/special-educational-needs/sleep-advice-for-parents-with-disabled-children/

Support with Feeding Concerns 

• If you have concerns for your child’s growth we would advice for you to access support from your child’s health visitor for weight and height measurement and discussion of further support as required
• If you have concerns your child is a very fussy eater and their diet is often restricted to certain foods, then you can access advice from the infant and toddler forum – with further support discussed at your child’s assessment: https://infantandtoddlerforum.org/health-and-childcare-professionals/factsheets/

Toileting Advice 

• Toileting- we would advice you to access advice from the following Eric – website – with further support discussed at you child’s assessment https://www.eric.org.uk/potty-training-children-with-additional-needs
• If your child is aged 4 plus and not yet fully toilet trained, contact your child’s Health visitor or specialist Cheyne specialist nurse, ccds.cnsteam@nhs.net –you should be eligible for support with free nappies until your child is successfully toilet trained  

SEND Local Offer 

Each local council has a SEND Offer for children with disabilities and complex health needs. The local offer aims to bring together useful information across education, health and social care within one website 

Look on your council’s Local SEND Offer website to find out what other support or services are available locally. Many services are inclusive and do not require a diagnosis to be able to access them. 

Local Services: Kensington and Chelsea

Kensington and Chelsea residents: www.rbkc.gov.uk/localoffer

Kensington and Chelsea Social Care Disabled Children’s Service

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

The Early Intervention & Support Team

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

• To receive support from this team the child must have a diagnosis or 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 families needs.
• They will have a range of Interventions and to offer to the family. These include support with Autism Spectrum Disorder awareness, Fussy Eating support, Sleep and behavioural advice, Health and Safety in the home, support with accessing nursery or school and many more. To access the team contact Cheyne specialist nursing team email ccds.cnsteam@nhs.net or contact number 0203 315 6470

Full of Life

• T: 0208 962 9994
• Email: info@fulloflifekc.com
• Website: www.fulloflifekc.com

Local Services: Westminster 

Westminster residents:

https://fisd.westminster.gov.uk/kb5/westminster/fis/localoffer.page?localofferchannel=0

For more info search “SEND Local Offer Westminster” in your internet search engine: https://fisd.westminster.gov.uk/kb5/westminster/fis/localoffer.page?localofferchannel=0

Westminster Social Care Disabled Children’s Service

Support from Kensington and Chelsea Disabled Children’s Service is provided by the Social Work Team, and 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 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 families needs.
• They will have a range of Interventions and to offer to the family. These include support with Autism Spectrum Disorder awareness, Fussy Eating support, Sleep and behavioural advice, and Health and Safety in the home, support with accessing nursery or school and many more
• To access the team contact Cheyne specialist nursing team email ccds.cnsteam@nhs.net or contact number 0203 315 6470

Make it Happen 

This information has been developed for parents and carers of children awaiting an multidisciplinary social communication assessment.

We have put together some information for you to support your child’s development while you wait.

There are many things that parents and carers can be doing to help support their child’s development and many resources available for children and their families.

Why your child has been accepted for a multidisciplinary social communication assessment

• Parents may asked for the referral following concerns of their child’s development including some questioning if their child`s has autism
• Communication: Some children are referred because they have difficulties with their speech and language or other aspects of their communication. For example, they may be delayed in learning to speak, or may not use non-verbal gestures.
• Social Interaction: Children are often referred because of difficulties interacting with others. They may find it difficult to make friends or engage in social conversations, they may misunderstand social cues, or may appear uncomfortable, awkward or anxious in social situations.
• Other behaviours: Children may be referred because they show certain behaviours or interests. They may flap their hands, have unusual interests, or want to follow certain routines. Others have sensory difficulties and are over-sensitive to sounds, smells or textures.
• Concerns by professionals including speech therapists, health visitors, nursery and school staff –of your child’s delayed development and or related difficulties – sometimes questioning if these might be explained by a diagnosis of autism spectrum disorder

Expected outcomes of assessment 

• Getting a diagnosis for a child can be helpful, as it enables parents, as well as others, to understand and support your child better. 
• Documentation from your child’s assessment should include explanation of  your child’s individual strengths and difficulties
• The assessment will aim to advice on the support your child might need to help them achieve their maximum potential
• Possible outcome of assessment might include a diagnosis of, Autism spectrum disorder ( ASD), developmental delay or a specific language difficulty
• You may find it helpful to read about autism spectrum disorder or other difficulties that your child is experiencing (see information section below).

Signs of autism in children

What is autism

National autistic society: Click here

Developmental language disorder

Developmental Language Disorder (ican.org.uk): Click here

What you can do whilst waiting for assessment

• Access a nursery or school place for your child
• Access support from speech and language therapy  assessment – please see additional information under communication websites towards the end of this document  
• Encouraging you child’s play skills under the section on SEND/Health/Speech and Language therapy. You can also look at the website: https://hungrylittleminds.campaign.gov.uk/ which has lots of ideas/activities to support play and communication
• Accessing support for your child’s individual needs, including behaviour, sleep, feeding, and toileting, advice. We have included some advice in this booklet and would suggest for you to look at this before discussing any further support with the team at your child’s assessment.
• Before your child’s assessment you will be offered contact from the specialist nursing team, if you need to contact them beforehand then please email ccds.cnsteam@nhs.net or call 0203 315 6470
• You can access support from your local Early intervention social care team, Cheyne specialist nurses can help with this: ccds.cnsteam@nhs.net or call 0203 315 6470

Benefits of nursery or school before assessment 

• Accessing nursery placement will help provide your child with additional play opportunities including access to indoor and outdoor activities
• Nursery provides a routine and structure to your child’s day. This routine should help your child feel more confident and secure, in control of their feelings and is great preparation for school readiness
• Attending nursery provides ongoing  evidence of your child’s  strengths, progress, and challenges in areas they may need support with.
• Nursery will help with your child’ social communication assessment –including additional reports on their progress and interaction with children of similar age.

Accessing nursery or school placements

• 2 year old offer: Some children 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; you can also contact your Health visitor for support with this or the Cheyne specialist nursing team ccds.cnsteam@nhs.net
• 3-4 year old offer: All parents/carers with a child aged 3-4 years are entitled to receive 15 hours; see local SEND offer for list of available nurseries
• School placement: Mainstream and specialist – you will need to apply to your local education department by the 15th January to access placement for the following September; see local SEND offer for list of available schools

Additional support in nursery and school

If you are concerned about your child’s progress at nursery or school, speak to their nursery key worker, or class teacher or the school/ nursery Special Educational Needs Coordinator (SENDCO). You might want to ask them the following questions: 

• What progress is your child making?
• What support is being put in place for your child?
• How will your child’s progress be monitored/what are their targets?
• What will be done if your child does not make progress?
• They may also be able to advise you on what approaches they have found useful at nursery or school, which you can try at home.
• If for some reason you or your child’s nursery or school , feels your child might need additional support to access education then you can access further information from the SEND local offer or Cheyne specialist nurse team, ccds.cnsteam@nhs.net

Support with behaviour

If you are struggling with your child’s behaviour or other specific issues: Speak to your Health visitor or contact the Cheyne specialist nursing team ccds.cnsteam@nhs.net. We would advise for:

• Discussion with your child’s speech therapist to further help guide you with helpful communication strategies for your individual child- including special play time advice
• Access advice from  the following NHS and Family lives websites www.nhs.uk/conditions/baby/babys-development/behaviour/dealing-with-child-behaviour-problems/
• www.familylives.org.uk/advice/early-years-development/behaviour/
• Contact your local children’s centre for information on additional parenting courses in your area: For more information you can contact: Ushma Bal (Parenting programme Manager) 07713 077 585 or email; ushma@upg.org.uk  

Sleep advice 

We understand how difficult life can be when your child has a sleep issue and how there are many factors which can be can affect children’s sleep  We would advise you to access advice  sleep guidance  whilst you are waiting for assessment. Further support can be discussed at your child’s assessment.

Please see the following links:

• Sleep hygiene advice GOSH: https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/sleep-hygiene-children/
• https://sleepcouncil.org.uk/advice-support/sleep-hub/family-matters/children-with-additional-needs/
• https://www.familylives.org.uk/advice/your-family/special-educational-needs/sleep-advice-for-parents-with-disabled-children/

Support with feeding concerns 

• If you have concerns for your child’s growth we would advice for you to access support from your child’s health visitor for weight and height measurement and discussion of further support as required
• If you have concerns your child is a very fussy eater and their diet is often restricted to certain foods, then you can access advice from the infant and toddler forum – with further support discussed at your child’s assessment: https://infantandtoddlerforum.org/health-and-childcare-professionals/factsheets/

Toileting advice

• Toileting- we would advice you to access advice from the following Eric – website – with further support discussed at you child’s assessment https://www.eric.org.uk/potty-training-children-with-additional-needs
• If your child is aged 4 plus and not yet fully toilet trained, contact your child’s Health visitor or specialist Cheyne specialist nurse, ccds.cnsteam@nhs.net –you should be eligible for support with free nappies until your child is successfully toilet trained

SEND local offer 

Each local council has a  SEND Offer  for children with disabilities and complex health needs .The local offer aims to bring together useful information across education, health and social care within one website.

Look on your council’s Local SEND Offer website to find out what other support or services are available locally. Many services are inclusive and do not require a diagnosis to be able to access them. 

Local Services: Hammersmith and Fulham 

For more info search “SEND Local Offer Hammersmith and Fulham” in your internet search engine: www.lbhf.gov.uk/localoffer

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. Your child doesn’t need a diagnosis to access support.

They operate a duty phone line between the hours of 9am - 4pm, Monday to Friday. The duty line is available for enquiries of accessing support including general support and signposting, to stay and  play groups, nursery  and school  and short term support from individual integrated key support workers.

To contact the duty line, please call 0208 753 4443 or contact the Cheyne nursing team ccds.cnsteam@nhs.net or 0203 315 6470

• Email: Enquiries_toStephenWiltshireCentre@lbhf.gov.uk
• Address: Queensmill Rd, (behind Queen’s Manor Primary school), London SW6 6JR

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. Parents are kept informed through coffee mornings, events, website, training, workshops and newsletters.

• Website: https://www.parentsactive.org.uk/
• T: 020 8 748 5168 
• Email: info@parentsactive.org.uk

Communication websites 

• Speech and language therapy website: https://www.clch.nhs.uk/services/speech-and-language-therapy-children
• NSPCC’s ‘Look, Say, Sing, Play’ campaign’ with the following link: https://www.nspcc.org.uk/preventing-abuse/keeping-children-safe/look-say-sing-play/sign-up
• Vroom: Boost your child's learning with Vroom's fast and fun tips to your phone , visit the website: https://www.vroom.org
• The Hungry Little Minds campaign provides lots of ideas that can help boost your child’s learning. https://hungrylittleminds.campaign.gov.uk/
• Parent forums: Contact for support if your child has additional education/health need
• The Communication Trust: for what to expect at different ages www.thecommunicationtrust.org.uk
• ICAN: a children’s communication charity www.ican.org.uk

Helpful Organisations

National Autistic Society (NAS)

• Website: https://www.autism.org.uk/
• T: 0808 800 4104
• Toilet Training a Guide for Parents and Carers: www.autism.org.uk/advice-and-guidance/topics/behaviour/toileting/parents

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

Contact a family

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

• Website: https://contact.org.uk/       
• T: 0808 808 3555

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.

• Website: https://www.ambitiousaboutautism.org.uk/
• T: 0208 815 544

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. 

• Website: http://www.challengingbehaviour.org.uk/
• T: 0300 666 0126

Accessing support for yourself 

We appreciate that waiting for your child’s assessment can be a stressful time. It is very important that you try to seek support from friends and family whilst waiting for your child’s assessment

If you are more isolated and do not have a supportive social network, there are other services available that can provide support.

You might benefit from accessing a parent carer forum group- they offer regular meetings and individual support:

• Parents Active: 0208 748 5168

Any further questions?

Please don’t hesitate to contact us if you have any further questions or concerns.

For questions about your appointment or waiting time, contact the social communication appointments coordinator on 0203 315 3121.

For questions about the assessment, and resources whilst you wait email the specialist community nursing team ccds.cnsteam@nhs.net

Preparing for the assessment 

• We understand that bringing a child for an assessment can be an anxious time for parents. We recommend that both parents attend the assessment where possible. If this is not possible, you are very welcome to bring a friend or relative to support you. 
• We might send pre assessment questionnaires to completed by parents or carers  – normally questions about their health and development history, so that you and the team are better prepared.
• The assessment involves detailed interviews with you as the child’s parent or carer, concentrating on the child’s early development , current behaviour and direct play assessment with your child, as well as collecting information from nursery or school
• We will ask for a nursery or school functioning questionnaire to be completed shortly before or after the assessment especially of their interaction with children of similar age.
• It is helpful for you to bring your Child’s Red book (child health records) so that we can see information on their growth and immunisation history. 
• We advise for you to bring a drink and snack for your child as some appointments will be 1-2 hours; a favourite toy might also be helpful
• Another common question asked by parents is how to prepare their child. This will vary depending on the age of your child- however for young children the assessment is very much play based so hopefully they will enjoy their experience.

Contact details 

Cheyne Address

Chelsea and Westminster Hospital (main location)

The Cheyne Child Development Service

Doughty House

369 Fulham Road

London, SW10 9NH

T: 0203 315 6488

Parkview Centre for Health & Wellbeing

The Cheyne Child Development Service

Cranston Court

56 Bloemfontein Road

White City, London W12 7FG

T: 0203 704 6060

• Cheyne Website: https://www.chelwest.nhs.uk/services/childrens-services/community-services/cheyne-child-development-service
• NAS_National Autistic Society: https://www.autism.org.uk/

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.

• Hammersmith and Fulham : Parents Active
• Kensington and Chelsea : Full of Life
• Westminster : Make it Happen  
• Post Autism Group Kensington and Chelsea: AEYIT@rbkc.gov.uk    
• Post Autism Group Westminster: qe2referral@qe2cp.westminster.sch.uk
• Post Autism Group  Hammersmith and Fulham: Sioux.Fisher@lbhf.gov.uk
• National Autistic Society (NAS) Parent to Parent support: Parent to Parent is the NAS' award winning UK wide confidential emotional support service, provided over the phone by trained volunteers who are all parents of autistic children : 0808 800 4106 https://www.autism.org.uk/directory/p/parent-to-parent

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: s.sylvan@nhs.net 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 ccds.cnsteam@nhs.net

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.

• Tel: 0203 315 6478
• Website: Click here

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: ccds.cnsteam@nhs.net

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)

• Kensington and Chelsea residents: Click here
• Hammersmith and Fulham residents: Click here
• Westminster residents: Click here

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

• Email: Enquiries_toStephenWiltshireCentre@lbhf.gov.uk
• Address: Queensmill Rd, (behind Queen’s Manor Primary school), London, SW6 6JR

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

• Website: www.parentsactive.org.uk
• Tel: 02087485168

Parent Coffee Mornings

For parents of children and young people with ASD.

• Mobile: 07765 406 862 / 07920 084463
• Email: adem.cetindamar@lbhf.gov.uk / Sioux.Fisher@lbhf.gov.uk

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.

• Email: info@letsuniteforautism.org 
• Tel: 0203 191 6214

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. 

• Email: team@wlac.org.uk 
• Tel: 020 7352 1155
• Website: https://www.wlac.org.uk/

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.

• Tel: 0208 840 9099
• Email: wlpp@insightsesc.co.uk  
• Website: https://insightsesc.co.uk/iass/

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 ccds.cnsteam@nhs.net 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. 

• Tel: 0208 962 9994
• Email: info@fulloflifekc.com
• Website: www.fulloflifekc.com

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 clare.sumpter@rbkc.gov.uk 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.

• Tel: 0207 289 7918
• Email: admin@tellitparentsnetwork.co.uk
• Website: https://tellitparentsnetwork.co.uk/

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 ccds.cnsteam@nhs.net

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. 

• Tel: 07376 777 205
• Email: info@wppg.org.uk
• Website: https://www.wppg.org.uk/about-us/

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. 

• Email: Westlondonbranch@nas.org.uk
• Website: http://naswestlondonbranch.webeden.co.uk

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.  

• Tel: 0207 641 5355   
• Email: iass@westminster.gov.uk           
• Website: www.westminsteriass.co.uk

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.

• Tel: 0207 724 1345
• Email: admin@hswestminster.co.uk
• Website: www.homestartwestminster.org.uk  

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.

• Website: https://www.autism.org.uk/
• Tel: 0808 800 4104

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.

• Website: https://www.ambitiousaboutautism.org.uk/ 
• Tel: 0208 815 544

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”.

• Website: https://www.autismeducationtrust.org.uk/
• Tel: 0207 903 3540

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.

• Website: http://www.challengingbehaviour.org.uk/
• Tel: 0300 666 0126

Contact a family

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

• Website: https://contact.org.uk/  
• Tel: 0808 808 3555

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.

• Website: https://www.sibs.org.uk/

Cerebra

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

• Website:  www.cerebra.org.uk           
• Tel: 01267 244200

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.

• Website: https://www.ipsea.org.uk
• Tel: 01799 582 030

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. 

• Website: https://www.understood.org/our-mission

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. 

• Website: www.theautismdirectory.com
• Tel: 01443 844764

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 ccds.cnsteam@nhs.net

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 ccds.cnsteam@nhs.net 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,ccds.cnsteam@nhs.net 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: Doreen.Taggart@actionondisability.org.uk : 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.

• Website: www.cerebra.org.uk
• Tel: 01267 244 216

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:

• https://www.picturehouses.com/accessibility
• https://dimensions-uk.org/get-involved/campaigns/dimensions-autism-friendly-environments/
• https://www.odeon.co.uk/accessibility/

Football Clubs

Football clubs offer some disability football programmes.

• Chelsea FC: rob.searle@chelseafc.com
• QPR FC:conorm@qpr.co.uk

Gambado

SEN & Autism Friendly FREE Soft Play Sessions at Gambado - Sessions available in Chelsea, Beckenham and Watford.

• Website: www.gambado.com

Otakar Kraus Music Trust

This Music trust provides opportunities for young people with special needs. 

• Website: www.okmtrust.co.uk  

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.

• Tel: 020 7942 4777
• Website: www.sciencemuseum.org.uk

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

• Speech and language therapy website: https://www.clch.nhs.uk/services/speech-and-language-therapy-children
• Speech Therapy Twitter page (for SLT tips and sharing resources): https://twitter.com/CLCH_SLT_CHD  If you don’t have Twitter find us online and paste links into your browser. If you have an account and would like to share helpful tips for other parents then tag us for a re-tweet with the following handle: @CLCH_SLT_CHD
• NSPCC’s ‘Look, Say, Sing, Play’ campaign’ with the following link: https://www.nspcc.org.uk/preventing-abuse/keeping-children-safe/look-say-sing-play/sign-up
• Vroom: Boost your child's learning with Vroom's fast and fun tips to your phone or via email. https://www.vroom.org
• The Hungry Little Minds campaign provides lots of ideas that can help boost your child’s learning. https://hungrylittleminds.campaign.gov.uk/
• Parent forums: Contact for support if your child has additional education/health need
• The Communication Trust: for what to expect at different ages www.thecommunicationtrust.org.uk
• ICAN: a children’s communication charity www.ican.org.uk
• 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
• Help for Families with autistic children: including how to help with your child’s behaviour: www.nhs.uk/conditions/autism/autism-and-everyday-life/help-for-families/
• More Than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder (Sussman, 1999)
• SENSORY AND MOTOR STRATEGIES by Corinna Laurie; Practical ways to help children and young people on the autism spectrum learn and achieve
• IT CAN GET BETTER by Paul Dickinson and Liz Hannah, Dealing with common behaviour problems in young children with autism
• HELPING YOUNG CHILDREN WITH AUTISM TO LEAR by Liz Hannah , A practical guide for parents and staff in mainstream schools and nurseries
• THE SURVIVAL GUIDE FOR KIDS WITH AUTISM SPECTRUM DISORDERS by Elizabeth Verdick and Elizabeth Reeve

Contact Us

Cheyne Child Development Service

Cheyne Pathway Co-ordinator: 0203 315 3121

Specialist Nurses: ccds.cnsteam@nhs.net

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/

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

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 or 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 CCDS.psychology@nhs.net

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). 

• E: CCDS.psychology@nhs.net
• T: 0203 315 3196

Local services

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

• K&C: Click here
• H&F: Click here
• South Westminster: Click here

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

Local Services: Westminster/RBKC/LBHF

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 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 (RBKC & SW1)
• The Tresham Centre : 0207 641 5095
• Bessborough Family Hub: 0207 598 4917
• Westminster Disabled children’s service: 0207 641 5095
• 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. 

• E: Westlondonbranch@nas.org.uk
• W: http://naswestlondonbranch.webeden.co.uk/

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.

• T: 0203 204 5500 (Westminster) 0208 383 6123 (RBKC) 020 8483 1979 (LBHF)
• W: CAMHS :: Central and North West London NHS Foundation Trust (cnwl.nhs.uk)

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. Westminster, Kensington & Chelsea and 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

W: http://cnwltalkingtherapies.org.uk/refer-yourself

Local Services: Hammersmith & Fulham

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.  

• T: Contact the duty line, please call 0208 753 4443 or email
• E: StephenWiltshireCentre@lbhf.gov.uk
• W: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=YhvL7YW7bOk
• Address: Queensmill Rd, (behind Queen’s Manor Primary school), London, SW6 6JR 

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’.

• T: 0208 748 5168 
• W: www.parentsactive.org.uk

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. 

• T: 020 7352 1155
• E: team@wlac.org.uk 
• W: https://www.wlac.org.uk/

Autismlinks (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.

• T: 0208 840 9099
• E: wlpp@insightsesc.co.uk
• W: https://insightsesc.co.uk/iass/

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.

• T: 0208 753 1021
• E:inspire@lbhf.gov.uk
• W: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=PHYzuYXNdBs&localofferchannel=0

Local Services: Kensington & Chelsea and Westminster

Autism and Early Years Intervention Team

This Specialist Service supports children and young people with ASD within the school setting. Schools are encouraged to refer to the service. 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 ASD awareness training. For the latest dates and to book onto a course, please contact Christa Morley by emailing Christa.Morley@rbkc.gov.uk or searching the local offer.

Care Planning and Review Team 

This team will support Families with a child who has additional needs aged 5 -13 years. 

• New online Parenting Support sessions/Webinars
• Parenting groups: Early Bird, Early Bird Plus, Teen Life, Triple P
• Monthly Q and A sessions with Practitioners and other colleagues.
• On-going support from the Disabled Children's Centres- St Quintin and Tresham  Care Package Delivery
• Drop Ins
• Activity Sessions
• ASD Girls group
• Sibling Support 

Preparing for Adulthood Team - Age 14+  

Once the child is 14 they will transfer or can be referred into this team. They will continue to support the families till the young person’s 18^th Birthday.

• This team will start to think about the future?
• Will they go to college or start to think about work?
• They will offer practical support for the young person to prepare for the next stage.

Short Breaks

Children with autism may be entitled to short breaks if they are affected in their everyday living by one or more of the following:

• Severe physical, learning disability or sensory impairment, which is substantial and has a negative effect on their ability to do normal daily activities
• Following diagnosis referrals are accepted, and can be requested by parents and professionals

T: 0207 598 4921  

Full of Life

Full of Life is a charity that supports and provides services to parents/carers and their disabled children/adults. They give free practical independent advice to parents/carers through their direct services including carers advocacy, family support, disability allowance and education. They also provide parent training groups and forums and services for young people (age 14+).

• T: 0208 962 9994
• E: office@fulloflifekc.com
• W: https://www.fulloflifekc.com/

Education: Full of Life Information and Advice and Support service (IASS)

The service offers independent advice, information and guidance on issues relating to SEN and Disability. The service is for parents of disabled children and young people.

• T: 020 8960 9064
• E: sen@fulloflifekc.com 
• W: https://www.fulloflifekc.com/sendiass/

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. 

• T: 020 7352 1155
• E: team@wlac.org.uk
• W: https://www.wlac.org.uk/

K&C 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.

• T: 0207 289 7918
• E: admin@tellitparentsnetwork.co.uk
• W: https://tellitparentsnetwork.co.uk/

The Venture Centre Stay and Play (Sessions for families of children with special needs)

The Venture Community Association has partnered with local parent groups to offer a series of free stay and play sessions for families of children with special needs.

• T: 0208 960 3234
• W: www.venturecentre.org.uk

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.              

• T: 0207 641 5355              
• E: iass@westminster.gov.uk
• W: Westminster Information Advice Support Service :: Home (westminsteriass.co.uk)

Westminster Special Schools Training and Outreach Service

The Westminster Special Schools and Outreach and Training Service delivers dynamic and creative special education support to pupils, staff, parents and a wide range of related services. This includes a course for parents and carers of children with a diagnosis of ASD (Cygnet Training). You can access more support in the Westminster SEND local offer ‘Autism Zone’. 

• T: 0207 641 5825               
• E: DCT@westminster.gov.uk 

Caxton Youth Organization

Caxton Youth Organization offers evening activities for young people aged 11-25, who live in Westminster and have disabilities.  

• T: 0207 834 1883
• E: caxtonyouthorg@btconnect.com
• W: Home - Caxton Youth Organisation

Learning Disability Network London (previously called the Westminster Society)

The Westminster Society is an award winning charity providing a range of group sessions and support for both adults and young people with Learning Disabilities from 14-18 years. Please note that not all children with ASD will qualify for this service.

• T: 020 8968 7376               
• W: Home - LDN London

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.

• T: 0808 800 4104
• W: https://www.autism.org.uk/  

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.

• T: 0208 815 544
• W: https://www.ambitiousaboutautism.org.uk/

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”.

• T: 0207 903 3540
• W: https://www.autismeducationtrust.org.uk/

Scope

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

W: https://www.scope.org.uk/

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.

• T: 0300 666 0126
• W: http://www.challengingbehaviour.org.uk/

Autism Links

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

W: http://autismlinks.co.uk

Contact a family

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

• T: 0808 808 3555
• W: https://contact.org.uk/       

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.

W: https://www.sibs.org.uk/

Cerebra

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

• T: 01267 244200
• W:  www.cerebra.org.uk             

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.

• T: 01799 582 030
• W: https://www.ipsea.org.uk                  

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. 

W: Understood - For learning and thinking differences

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. 

• T: 01443 844764
• W: www.theautismdirectory.com         

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
• W: ERIC

Further Healthcare services  

Dietetics

The paediatric dieticians 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.

• T: 020 7534 6524 / 6529 or 111 out of hours
• E: clcht.dental@nhs.net
• W: https://clch.nhs.uk/services/dentistry

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. 

Autism Outreach Team:

H&F Inclusion and Specialist Outreach Service (Inspire)

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 on the H&F Local Offer page: 

W: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=PHYzuYXNdBs&localofferchannel=0 

RBKC/Westminster: Autism and Early Years Intervention Team

This Specialist Service supports children and young people with ASD within the school setting. Schools are encouraged to refer to the service. 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 ASD awareness training. Further information can be found on the RBKC Local Offer page:

W: https://www.rbkc.gov.uk/kb5/rbkc/fis/advice.page?id=n3OtP7-bx4o

Information and Advice Support Service (IASS)

Information and Advice Support Services (IASS) were formerly known as Parent Partnership Services (PPS). It 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.

Hammersmith & Fulham

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

Kensington & Chelsea

• T: 0208 962 9994
• Address: Full of Life, Kensal House Annex, 379 Ladbroke Grove, London, W10 5BQ, 

Westminster

• T: 0207 6415355
• E: iass@westminster.gov.uk
• W: www.westminsteriass.co.uk
• Address: City Council, Children and Young People, 1st Floor, 215 Lisson Grove, London NW8 8LF

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: 

Touch screen computers/holidays(up to £500)/specialist car seats/approved therapies/trampoline/sensory toys/specialist cycles.

• T: 01267 244216
• W: www.cerebra.org.uk

Disabled Parking Badges

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

Recreational Activities 

Cinema

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

Websites

• Autism-Friendly Screenings (picturehouses.com)  
• Find Autism Friendly Cinema Screenings Near You | Dimensions (dimensions-uk.org) 
• ODEON - Autism friendly
• Accessible Screenings | UKCA (accessiblescreeningsuk.co.uk)

Football Clubs 

Football clubs offer some disability football programmes.

• Chelsea FC: rob.searle@chelseafc.com
• QPR FC: conorm@qpr.co.uk

Gambado

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

W: www.gambado.com

Otakar Kraus Music Trust

This Music trust provides opportunities for young people with special needs.

W: www.okmtrust.co.uk

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.

• T: 020 7942 4777
• W: www.sciencemuseum.org.uk

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
• The Den - Autism Education Trust - an online resource for teens on the autism spectrum
• https://www.autismeducationtrust.org.uk/kids-zone/ - an online resource for children on the autism spectrum 
• A useful short film ‘Amazing Things Happen’ explains autism in a clear and positive way: https://www.youtube.com/channel/UCZYtA26fbFCYIecm-WsEaeQ

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 CCDS.psychology@nhs.net 

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). 

• T: 0203 315 3196
• E: CCDS.psychology@nhs.net

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

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 or 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 CCDS.psychology@nhs.net  

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).

• T: 0203 315 3196
• E: CCDS.psychology@nhs.net

Local services: Kensington & Chelsea  

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

K&C: www.rbkc.gov.uk/localoffer 

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 services run these courses, please contact them for further details:

• Autism and Early Years Intervention Team: 0207 854 5885 (RBKC & SW1)
• The Tresham Centre : 0207 641 5095
• Bessborough Family Hub: 0207 598 4917

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. 

• E: Westlondonbranch@nas.org.uk
• W: http://naswestlondonbranch.webeden.co.uk/  

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.

• T: 0208 383 6123 (RBKC)
• W: CAMHS :: Central and North West London NHS Foundation Trust (cnwl.nhs.uk)

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. Westminster, Kensington & Chelsea and 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

• W: http://cnwltalkingtherapies.org.uk/refer-yourself  

Autism and Early Years Intervention Team

This Specialist Service supports children and young people with ASD within the school setting. Schools are encouraged to refer to the service. 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 ASD awareness training. For the latest dates and to book onto a course, please contact Christa Morley by emailing Christa.Morley@rbkc.gov.uk or searching the local offer. 

Care Planning and Review Team 

This team will support Families with a child who has additional needs aged 5 -13 years. 

• New online Parenting Support sessions/Webinars
• Parenting groups: Early Bird, Early Bird Plus, Teen Life, Triple P
• Monthly Q and A sessions with Practitioners and other colleagues.
• On-going support from the Disabled Children's Centres- St Quintin and Tresham  Care Package Delivery
• Drop Ins
• Activity Sessions
• ASD Girls group
• Sibling Support

Preparing for Adulthood Team - Age 14 plus  

At 14-years, the child will transfer or can be referred into this team who will continue to provide support until the young person’s 18^th Birthday. The team will start to think about the future. For example, will the young person go to college or start to think about work?  They will also offer practical support for the young person to prepare for the next stage.

Short Breaks

Children with autism may be entitled to short breaks if they are affected in their everyday living by one or more of the following: severe physical, learning disability or sensory impairment, which is substantial and has a negative effect on their ability to do normal daily activities

Following diagnosis referrals are accepted, and can be requested by parents and professionals:

• T: 0207 598 4921 

Full of Life

Full of Life is a charity that supports and provides services to parents/carers and their disabled children/adults. They give free practical independent advice to parents/carers through their direct services including carers advocacy, family support, disability allowance and education. They also provide parent training groups and forums and services for young people (age 14+).

• T: 0208 962 9994
• E: office@fulloflifekc.com
• W: https://www.fulloflifekc.com/

Education: Full of Life Information and Advice and Support service (IASS)

The service offers independent advice, information and guidance on issues relating to SEN and Disability. The service is for parents of disabled children and young people.

• T: 020 8960 9064
• E: sen@fulloflifekc.com 
• W: https://www.fulloflifekc.com/sendiass/

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. 

• T: 020 7352 1155
• E: team@wlac.org.uk 
• W: https://www.wlac.org.uk/

K&C 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.

• T: 0207 289 7918
• E: admin@tellitparentsnetwork.co.uk
• W: https://tellitparentsnetwork.co.uk/

The Venture Centre Stay and Play (Sessions for families of children with special needs)

The Venture Community Association has partnered with local parent groups to offer a series of free stay and play sessions for families of children with special needs.

• T: 0208 960 3234
• W: www.venturecentre.org.uk

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.

• T: 0808 800 4104
• W: https://www.autism.org.uk/  

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.

• T: 0208 815 544
• W: https://www.ambitiousaboutautism.org.uk/

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”.

• T: 0207 903 3540
• W: https://www.autismeducationtrust.org.uk/

Scope

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

• W: https://www.scope.org.uk/

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.

• T: 0300 666 0126
• W: http://www.challengingbehaviour.org.uk/

Autism Links

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

• W: http://autismlinks.co.uk

Contact a family

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

• T: 0808 808 3555
• W: https://contact.org.uk/      

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.

• W: https://www.sibs.org.uk/  

Cerebra

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

• T: 01267 244200
• W: www.cerebra.org.uk             

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.

• T: 01799 582 030
• W: https://www.ipsea.org.uk                  

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. 

• W: www.understood.org/en   

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. 

• T: 01443 844764
• W: www.theautismdirectory.com         

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..

• T: 020 7534 6524 / 6529 or 111 out of hours
• W: https://clch.nhs.uk/services/dentistry
• E: clcht.dental@nhs.net

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.

RBKC/Westminster Autism and Early Years Intervention Team

This Specialist Service supports children and young people with ASD within the school setting. Schools are encouraged to refer to the service. 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 ASD awareness training.

Further information can be found on the RBKC Local Offer page: https://www.rbkc.gov.uk/kb5/rbkc/fis/advice.page?id=n3OtP7-bx4o

Information and Advice Support Service (IASS)

Information and Advice Support Services (IASS) were formerly known as Parent Partnership Services (PPS). It 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.

Kensington & Chelsea

• T: 0208 962 9994 
• Address: Full of Life, Kensal House Annex, 379 Ladbroke Grove, London, W10 5BQ

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: 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:  Touch screen computers, holidays (up to £500), specialist car seats, approved therapies, trampoline, sensory toys, and specialist cycles.

• T: 01267 244216
• W: www.cerebra.org.uk

Disabled Parking Badges

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

Recreational Activities 

Cinema

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

Websites

• Autism-Friendly Screenings (picturehouses.com)
• Find Autism Friendly Cinema Screenings Near You | Dimensions (dimensions-uk.org)
• ODEON - Autism friendly
• Accessible Screenings | UKCA (accessiblescreeningsuk.co.uk)

Football Clubs 

Football clubs offer some disability football programmes.

• Chelsea FC: rob.searle@chelseafc.com
• QPR FC:conorm@qpr.co.uk 

Gambado

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

Beckenham and Watford: www.gambado.com  

Otakar Kraus Music Trust

This Music trust provides opportunities for young people with special needs.

• W: www.okmtrust.co.uk

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.

• T: 020 7942 4777
• W: www.sciencemuseum.org.uk

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  

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 or 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 CCDS.psychology@nhs.net 

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).

• T: 0203 315 3196
• E: CCDS.psychology@nhs.net  

This information has been developed for parents and carers of children awaiting an autism assessment. 

The number of referrals to our service has been steadily increasing in recent years, which has led to longer waiting times. This is a national problem affecting services across the UK. We know that this can be a stressful time for parents/carers, waiting for their child to be assessed. 

We have put together some information for you to support your child’s development while you wait. 

There are many things that parents and carers can be doing to help support their child’s development and many resources available for children and their families.

What you can do while waiting for your child’s assessment

You may find it helpful to read about autism spectrum disorder or other difficulties that your child is experiencing. 

If you are struggling with your child’s behaviour or other issues: 

• Speak to your GP
• Contact your local children’s centre, online borough parenting courses or the Early help team in your borough; they should be able to support you in accessing a local parenting course.
• Access the online ‘Understanding Behaviour’ short video series developed by the Psychology Team at Cheyne https://vimeo.com/showcase/7307608

Access online information on managing other common issues: 

Sleep

• Home - The Sleep Charity
• https://www.familylives.org.uk/advice/your-family/specialeducational-needs/sleep-advice-for-parents-with-disabledchildren/

Feeding 

• www.childfeedingguide.co.uk

Toileting

• https://www.eric.org.uk/potty-training-children-withadditional-needs
• If your child is school age and not yet fully toilet trained, contact your child’s school nurse to access further support. 

• If you are concerned about your child’s mental health, speak to your GP and ask for a referral to the local CAMHS service. Should you continue to be concerned you can contact the Early help team in your borough to request further support.
• Speak to your child’s school about your concerns. Ask how your child is progressing and what support they have in place for your child. They may also be able to advise you on what approaches they have found useful at nursery or school, which you can try at home.  
• Look on your council’s Local SEND Offer website to find out what other support/services are available locally. Many services are inclusive and do not require a diagnosis to be able to access them.  
• If your child has difficulties with speech and language or communication, the local offer websites have information on communicating with your child and encouraging you child’s play skills under the section on SEND/Health/Speech and Language therapy.
• You can also look at the website Hungry Little Minds – Simple fun, activities for kids aged 0 – 5 (campaign.gov.uk) which has lots of ideas/activities to support play and communication. 
• Think about your own needs. This can be a stressful and lonely time for parents. Try to seek support from friends and family. If you are more isolated and do not have a not have a supportive social network, there are other services available that can provide support. 
• If you have specific questions or concerns, you can contact the admin team on 0203 315 3121 and your call will be directed to the appropriate professional. 
• Closer to the time of the assessment, you may find it helpful to give your child some information about the assessment. We have provided further information on preparing your child for the assessment

Information resources

There is lots of information now available on the internet and it can be overwhelming to know where to start or which information is helpful. Not all information will be helpful. We have put together a list of books and websites that we would recommend if parents want to access information while waiting for their child’s assessment. 

Useful books 

• MORE THAN WORDS: HELPING PARENTS PROMOTE COMMUNICATION AND SOCIAL SKILLS IN CHILDREN WITH AUTISM SPECTRUM DISORDER by Fern Sussman - a useful guide for younger and non-verbal children.
• SENSORY AND MOTOR STRATEGIES by Corinna Laurie - Practical ways to help children and young people on the autism spectrum learn and achieve.
• IT CAN GET BETTER by Paul Dickinson and Liz Hannah - Dealing with common behaviour problems in young children with autism.
• AUTISM: UNDERSTANDING AND MANAGING ANGER by Andrew Powell.
• THE PANICOSAURUS, THE RED BEAST AND THE DISAPPOINTMENT DRAGON by Kay Al-Ghani - These books aim to help children understand their emotions including anxiety, anger and disappointment.

Useful websites  

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 people. 

• T: 0808 800 4104
• W: www.autism.org.uk

The Challenging Behaviour Foundation 

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

• W: www.challengingbehaviour.org.uk

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.

• W: www.ambitiousaboutautism.org.uk

Contact 

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

• W: www.contact.org.uk  

Autism Links

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

• W: http://autismlinks.co.uk

Accessing support for your child

Some parents may want to access support while they are awaiting assessment. The following services may be able to offer support:

Local Parenting Courses

Provided in most local Children’s Centres. We would recommend that parents access local courses as a first step. Parents can sign up to these courses directly. Your local early help team can also help you access a suitable course.

• In H&F: www.upg.org.uk
• In K&C: https://www.rbkc.gov.uk/kb5/rbkc/fis/family.page?familychannel=7 or call Di Thomas on 07875 125 288
• In Westminster: https://www.westminster.gov.uk/children-and-education/ parenting-groups-and-courses or email earlyhelpparentingteam@westminster.gov.uk  

Cheyne Child Development Service Therapy teams

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.

• T: 0208 102 4008

Speech and Language Therapy 

The Speech and Language Therapy team provide a service to pre-school children with speech, language, communication and/or swallowing difficulties. Further information can be found here: https://clch.nhs.uk/services/speech-and-language-therapychildren or by telephoning the number below. 

If your child is school age, please speak to their class teacher or the school’s special educational needs co-ordinator about supporting your child’s language and communication skills or call on the number below.

• T: 0207 266 8777

Clinical Psychology

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

Parents are able to access this support once their child has attended their initial paediatric appointment within the service. 

Physiotherapy

Physiotherapy can enable your child to develop his or her motor skills and physical independence. The paediatric physiotherapist has detailed knowledge and experience of typical and atypical physical development in children.

If your child looks like they might need physiotherapy, the physiotherapist will be present at the assessment and will want to look at your child to assess his or her physical skills and talk to you about your concerns. The physiotherapist always works in partnership with families and other professionals. 

It is vital for all children that their parents, carers and physiotherapist work together as a team. The physiotherapist will show you activities that you can do at home, and train you so you can help your child’s physical development. 

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.

Resources are available on our webpage www.chelwest.nhs.uk/musictherapy     

• T: 0203 315 6472 

Mental Health Services (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.

• T: 0203 204 5500 (Westminster) 
• T: 0208 383 6123 (RBKC)
• T: 020 8483 1979 (LBHF)
• W: CAMHS :: Central and North West London NHS Foundation Trust (cnwl.nhs.uk)  

Local Services: Hammersmith & Fulham

For more information search “SEND local offer LBHF” 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 offer advice and post diagnostic support from integrated key workers via an open advice line for parents Monday to Friday 09:30 am to 14:00pm.  

• T: 0208 753 4443
• E: Enquiries_toStephenWiltshireCentre@lbhf.gov.uk  
• W: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=YhvL7YW7bOk
• Address: Queensmill Rd, (behind Queen’s Manor Primary school), London, SW6 6JR

Parent’s active          

This is a parent led organisation for parents of children with additional needs in H&F. They 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.

• T: 0208 748 5168
• W: www.parentsactive.org.uk  

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. 

• T: 020 7352 1155 
• E: team@wlac.org.uk  
• W: https://www.wlac.org.uk/

(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.

• T: 0208 840 9099
• E: wlpp@insightsesc.co.uk
• W: https://insightsesc.co.uk/iass/

Local Services: Kensington and Chelsea

Visit the SEND Local Offer Autism Zone

Full of Life

Full of Life is a charity that supports and provides services to parents/carers and their disabled children/adults. They give free practical independent advice to parents/carers through their direct services including carers advocacy, family support, disability allowance and education. They also provide parent training groups and forums and services for young people (age 14+).

• T: 0208 962 9994
• E: office@fulloflifekc.com
• W: https://www.fulloflifekc.com/

Education: Full of Life Information and Advice and Support service (IASS)

The service offers independent advice, information and guidance on issues relating to SEN and Disability. The service is for parents of disabled children and young people.

• T: 020 8960 9064
• E: sen@fulloflifekc.com 
• W: https://www.fulloflifekc.com/sendiass/

K&C 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.

• T: 0207 289 7918
• E: admin@tellitparentsnetwork.co.uk
• W: https://tellitparentsnetwork.co.uk/

Early Help for families 

The Early Help Team work with families who have children aged 019, where there are indications of emerging difficulties and/or additional needs and offer a range of different interventions, including parenting work, sleep support, individual support and family health and wellbeing. 

• T: 020 7598 4608
• W: www.rbkc.gov.uk/health-and-social-care/early-help-families
• E: earlyhelp@rbkc.gov.uk

Local Services: Westminster

NEW: Visit the SEND Local Offer Autism Zone via SEND local offer Westminster  

Early support for children and families can be accessed through Westminster Early Help 

• T: 020 7641 5923 
• E: cdrakewilkes@westminster.gov.uk
• W : Early Help | Westminster FIS
• Address: Family Hub, 1 Bessborough Street, SW1V 2JD. 

Education: 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.       

• T: 0207 641 5355      
• E: iass@westminster.gov.uk                
• W: www.westminsteriass.co.uk  

Caxton Youth Organisation

Caxton Youth Organization offers evening activities for young people aged 11-25, who live in Westminster and have disabilities.  

• T: 0207 834 1883
• E: caxtonyouthorg@btconnect.com
• W: www.caxtonyouth.org

Accessing support for yourself

We know how stressful it can be for parents having concerns about your child and having to wait for assessments. It is very important that you try to seek support from friends and family.

If you are more isolated and do not have a supportive social network, there are other services available that can provide support. 

• Try to take time for yourself on a daily basis, even if just for a few minutes.
• If you are struggling to manage your feelings or are feeling very low, it is important that you speak to your GP about how you are feeling. They may be able to refer you to counselling services. 

Useful links

• Every Mind Matters NHS: Every Mind Matters - NHS (www.nhs.uk)
• Talking Therapies NHS https://www.nhs.uk/conditions/stress-anxietydepression/types-of-therapy/

Supporting your child in school

Many children awaiting an assessment will already be attending school. All Schools have a statutory duty to provide care for children with additional needs or disabilities and to make necessary adjustments to support children with disabilities.

If you are concerned about your child’s progress at school, speak to their class teacher and/or the school Special Educational Needs Coordinator (SENDCo).

You might want to ask them the following questions:

• What progress is your child making?
• What support is being put in place for your child?
• 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. Not all children will require an Education Health Care Plan (EHCP). However, for some children, their needs cannot be met within the school’s current resources. For these children, schools may request an EHCP assessment. This is carried out by the local Education Authority.

It is also important to note that not all children who receive a diagnosis of Autism Spectrum Disorder will need an EHCP. There are many support strategies that schools and nurseries can put in place to support a child with ASD. We provide further information on this in our assessment reports.

There are also outreach teachers who can provide schools with further advice on supporting children with ASD. 

In Hammersmith & Fulham, schools can access outreach support from the Inspire Team. Further information can be found at: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=PHYzuYXNdBs&localofferchannel=0

In Kensington & Chelsea and Westminster, the Autism and Early Years Team (AEYT) provides outreach support to schools. Further information can be found on the following link: https://www.rbkc.gov.uk/kb5/rbkc/fis/advice.page?id=n3OtP7-bx4o

Preparing for the assessment

Parents have told us that they would like more information about the assessment process and what the assessment will involve, to help them know what to expect at the assessment. We understand that bringing a child for an assessment can be very anxiety-provoking for many parents.

We recommend that both parents attend the assessment where possible. If this is not possible, you are very welcome to bring a friend or relative to support you.  

Another common question asked by parents is how to prepare their child.  This will vary depending on the age of your child. 

We answer these questions more fully in our ASD Assessment Pathway Leaflet which you will receive before your assessment.  

Any further questions?

Please don’t hesitate to contact us if you have any further questions or concerns.

For questions about your appointment or waiting time, contact the appointments coordinator on 020 3315 3121

Address

Chelsea and Westminster Hospital (main location)

The Cheyne Child Development Service

Doughty House

369 Fulham Road, London, SW10 9NH 

T: 020 3315 6488 

Parkview Centre for Health & Wellbeing 

The Cheyne Child Development Service 

Cranston Court 

56 Bloemfontein Road, White City, London W12 7FG

T: 020 3704 6060 

W: https://www.chelwest.nhs.uk/services/childrensservices/community-services/cheyne-child-developmentservice 

This information has been developed for parents and carers of children awaiting an autism assessment. 

The number of referrals to our service has been steadily increasing in recent years, which has led to longer waiting times. This is a national problem affecting services across the UK. We know that this can be a stressful time for parents/carers, waiting for their child to be assessed. 

We have put together some information for you to support your child’s development while you wait. 

There are many things that parents and carers can be doing to help support their child’s development and many resources available for children and their families.

What you can do while waiting for your child’s assessment

You may find it helpful to read about autism spectrum disorder or other difficulties that your child is experiencing (see information section below). 

If you are struggling with your child’s behaviour or other issues: 

• Speak to your GP
• Contact your local children’s centre, online borough parenting courses or the Early help team in your borough; they should be able to support you in accessing a local parenting course.
• Access the online ‘Understanding Behaviour’ short video series developed by the Psychology Team at Cheyne https://vimeo.com/showcase/7307608

Access online information on managing other common issues 

Sleep 

• Home - The Sleep Charity
• https://www.familylives.org.uk/advice/your-family/specialeducational-needs/sleep-advice-for-parents-with-disabledchildren/

Feeding 

• www.childfeedingguide.co.uk

Toileting

• https://www.eric.org.uk/potty-training-children-withadditional-needs

If your child is school age and not yet fully toilet trained, contact your child’s school nurse to access further support. 

• If you are concerned about your child’s mental health, speak to your GP and ask for a referral to the local CAMHS service. Should you continue to be concerned you can contact the Early help team in your borough to request further support. 
• Speak to your child’s school about your concerns. Ask how your child is progressing and what support they have in place for your child. They may also be able to advise you on what approaches they have found useful at nursery or school, which you can try at home.  
• Look on your council’s Local SEND Offer website to find out what other support/services are available locally. Many services are inclusive and do not require a diagnosis to be able to access them.
• If your child has difficulties with speech and language or communication, the local offer websites have information on communicating with your child and encouraging you child’s play skills under the section on SEND/Health/Speech and Language therapy.
• You can also look at the website Hungry Little Minds – Simple fun, activities for kids aged 0 – 5 (campaign.gov.uk) which has lots of ideas/activities to support play and communication. 
• Think about your own needs. This can be a stressful and lonely time for parents. Try to seek support from friends and family. If you are more isolated and do not have a not have a supportive social network, there are other services available that can provide support.  

If you have specific questions or concerns, you can contact the admin team on 0203 315 3121 and your call will be directed to the appropriate professional. 

Closer to the time of the assessment, you may find it helpful to give your child some information about the assessment. We have provided further information on preparing your child for the assessment.

Information resources

There is lots of information now available on the internet and it can be overwhelming to know where to start or which information is helpful. Not all information will be helpful. We have put together a list of books and websites that we would recommend if parents want to access information while waiting for their child’s assessment.

Useful books  

• MORE THAN WORDS: HELPING PARENTS PROMOTE COMMUNICATION AND SOCIAL SKILLS IN CHILDREN WITH AUTISM SPECTRUM DISORDER by Fern Sussman - A useful guide for younger and non-verbal children
• SENSORY AND MOTOR STRATEGIES by Corinna Laurie - Practical ways to help children and young people on the autism spectrum learn and achieve
• IT CAN GET BETTER by Paul Dickinson and Liz Hannah - Dealing with common behaviour problems in young children with autism
• AUTISM: UNDERSTANDING AND MANAGING ANGER by Andrew Powell
• THE PANICOSAURUS, THE RED BEAST AND THE DISAPPOINTMENT DRAGON by Kay Al-Ghani - These books aim to help children understand their emotions including anxiety, anger and disappointment.  

Useful websites

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 people. 

• T: 0808 800 4104
• W: www.autism.org.uk

The Challenging Behaviour Foundation 

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

• W: www.challengingbehaviour.org.uk 

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.

• W: www.ambitiousaboutautism.org.uk

Contact 

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

• W: www.contact.org.uk  

Autism Links

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

• W: http://autismlinks.co.uk

Accessing support for your child

Some parents may want to access support while they are awaiting assessment. The following services may be able to offer support:

Local Parenting Courses

Provided in most local Children’s Centres. We would recommend that parents access local courses as a first step. Parents can sign up to these courses directly. Your local early help team can also help you access a suitable course.  In H&F this can be found at: www.upg.org.uk  

Cheyne Child Development Service Therapy teams

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.

• T: 0208 102 4008

Speech and Language Therapy 

The Speech and Language Therapy team provide a service to pre-school children with speech, language, communication and/or swallowing difficulties. Further information can be found here: https://clch.nhs.uk/services/speech-and-language-therapychildren or by telephoning the number below. 

If your child is school age, please speak to their class teacher or the school’s special educational needs co-ordinator about supporting your child’s language and communication skills or call on the number below.

• T: 0207 266 8777

Clinical Psychology

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

Parents are able to access this support once their child has attended their initial paediatric appointment within the service. 

Physiotherapy

Physiotherapy can enable your child to develop his or her motor skills and physical independence. The paediatric physiotherapist has detailed knowledge and experience of typical and atypical physical development in children.

If your child looks like they might need physiotherapy, the physiotherapist will be present at the assessment and will want to look at your child to assess his or her physical skills and talk to you about your concerns. The physiotherapist always works in partnership with families and other professionals. 

It is vital for all children that their parents, carers and physiotherapist work together as a team. The physiotherapist will show you activities that you can do at home, and train you so you can help your child’s physical development. 

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.  Resources are available on our webpage www.chelwest.nhs.uk/musictherapy 

• T: 0203 315 6472 

Mental Health Services (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.

• T: 020 8483 1979 (LBHF)
• W: CAMHS :: Central and North West London NHS Foundation Trust (cnwl.nhs.uk)

Local Services: Hammersmith & Fulham

For more information search “SEND local offer LBHF” 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 offer advice and post diagnostic support from integrated key workers via an open advice line for parents Monday to Friday 09:30 am to 14:00pm.  

• T: 0208 753 4443
• E: Enquiries_toStephenWiltshireCentre@lbhf.gov.uk
• W: TSWC leaflet 2019 (LO version) (openobjects.com)
• Address: Queensmill Rd, (behind Queen’s Manor Primary school), London, SW6 6JR

Parent’s active

This is a parent led organisation for parents of children with additional needs in H&F. They 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.

• T: 0208 748 5168
• W: www.parentsactive.org.uk  

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. 

• T: 020 7352 1155
• E: team@wlac.org.uk  
• W: https://www.wlac.org.uk/

(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.

• T: 0208 840 9099
• E: wlpp@insightsesc.co.uk
• W: https://insightsesc.co.uk/iass/

Accessing support for yourself

We know how stressful it can be for parents having concerns about your child and having to wait for assessments. It is very important that you try to seek support from friends and family.

If you are more isolated and do not have a supportive social network, there are other services available that can provide support. 

• Try to take time for yourself on a daily basis, even if just for a few minutes.
• If you are struggling to manage your feelings or are feeling very low, it is important that you speak to your GP about how you are feeling. They may be able to refer you to counselling services. 

Useful links

• Every Mind Matters NHS: Every Mind Matters - NHS (www.nhs.uk)
• Talking Therapies NHS https://www.nhs.uk/conditions/stress-anxietydepression/types-of-therapy/

Supporting your child in school

Many children awaiting an assessment will already be attending school. All Schools have a statutory duty to provide care for children with additional needs or disabilities and to make necessary adjustments to support children with disabilities.

If you are concerned about your child’s progress at school, speak to their class teacher and/or the school Special Educational Needs Coordinator (SENDCo).

You might want to ask them the following questions:

• What progress is your child making?
• What support is being put in place for your child?
• 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. Not all children will require an Education Health Care Plan (EHCP). However, for some children, their needs cannot be met within the school’s current resources. For these children, schools may request an EHCP assessment. This is carried out by the local Education Authority. 

It is also important to note that not all children who receive a diagnosis of Autism Spectrum Disorder will need an EHCP. There are many support strategies that schools and nurseries can put in place to support a child with ASD. We provide further information on this in our assessment reports.

There are also outreach teachers who can provide schools with further advice on supporting children with ASD. 

In Hammersmith & Fulham, schools can access outreach support from the Inspire Team. Further information can be found at: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=PHYzuYXNdBs&localofferchannel=0

Preparing for the assessment 

Parents have told us that they would like more information about the assessment process and what the assessment will involve, to help them know what to expect at the assessment. We understand that bringing a child for an assessment can be very anxiety-provoking for many parents.

We recommend that both parents attend the assessment where possible. If this is not possible, you are very welcome to bring a friend or relative to support you.  

Another common question asked by parents is how to prepare their child.  This will vary depending on the age of your child.

Any further questions?

Please don’t hesitate to contact us if you have any further questions or concerns.

For questions about your appointment or waiting time: contact the appointments coordinator on 020 3315 3121

Chelsea and Westminster Hospital (main location)

The Cheyne Child Development Service

Doughty House

369 Fulham Road, London, SW10 9NH 

 020 3315 6488 

Parkview Centre for Health & Wellbeing 

The Cheyne Child Development Service 

Cranston Court 

56 Bloemfontein Road

White City, London W12 7FG

T: 020 3704 6060 

W: https://www.chelwest.nhs.uk/services/childrensservices/community-services/cheyne-child-developmentservice

This information has been developed for parents and carers of children awaiting an autism assessment. 

The number of referrals to our service has been steadily increasing in recent years, which has led to longer waiting times. This is a national problem affecting services across the UK. We know that this can be a stressful time for parents/carers, waiting for their child to be assessed. 

We have put together some information for you to support your child’s development while you wait. 

There are many things that parents and carers can be doing to help support their child’s development and many resources available for children and their families.

What you can do while waiting for your child’s assessment

You may find it helpful to read about autism spectrum disorder or other difficulties that your child is experiencing (see information section below). 

If you are struggling with your child’s behaviour or other issues:

• Speak to your GP
• Contact your local children’s centre, online borough parenting courses or the Early help team in your borough; they should be able to support you in accessing a local parenting course.
• Access the online ‘Understanding Behaviour’ short video series developed by the Psychology Team at Cheyne https://vimeo.com/showcase/7307608

Access online information on managing other common issues

Sleep

• Home - The Sleep Charity
• https://www.familylives.org.uk/advice/your-family/specialeducational-needs/sleep-advice-for-parents-with-disabledchildren/

Feeding

• www.childfeedingguide.co.uk

Toileting

• https://www.eric.org.uk/potty-training-children-withadditional-needs

If your child is school age and not yet fully toilet trained, contact your child’s school nurse to access further support.

• If you are concerned about your child’s mental health, speak to your GP and ask for a referral to the local CAMHS service. Should you continue to be concerned you can contact the Early help team in your borough to request further support. 
• Speak to your child’s school about your concerns. Ask how your child is progressing and what support they have in place for your child. They may also be able to advise you on what approaches they have found useful at nursery or school, which you can try at home.  
• Look on your council’s Local SEND Offer website to find out what other support/services are available locally. Many services are inclusive and do not require a diagnosis to be able to access them.
• If your child has difficulties with speech and language or communication, the local offer websites have information on communicating with your child and encouraging you child’s play skills under the section on SEND/Health/Speech and Language therapy.
• You can also look at the website  Hungry Little Minds – Simple fun, activities for kids aged 0 – 5 (campaign.gov.uk) which has lots of ideas/activities to support play and communication. 
• Think about your own needs. This can be a stressful and lonely time for parents. Try to seek support from friends and family. If you are more isolated and do not have a not have a supportive social network, there are other services available that can provide support. 

If you have specific questions or concerns, you can contact the admin team on 0203 315 3121 and your call will be directed to the appropriate professional. 

Closer to the time of the assessment, you may find it helpful to give your child some information about the assessment. We have provided further information on preparing your child for the assessment.

Information resources

There is lots of information now available on the internet and it can be overwhelming to know where to start or which information is helpful.

Not all information will be helpful. We have put together a list of books and websites that we would recommend if parents want to access information while waiting for their child’s assessment.

Useful books 

• MORE THAN WORDS: HELPING PARENTS PROMOTE COMMUNICATION AND SOCIAL SKILLS IN CHILDREN WITH AUTISM SPECTRUM DISORDER by Fern Sussman - A useful guide for younger and non-verbal children
• SENSORY AND MOTOR STRATEGIES by Corinna Laurie - Practical ways to help children and young people on the autism spectrum learn and achieve
• IT CAN GET BETTER by Paul Dickinson and Liz Hannah - Dealing with common behaviour problems in young children with autism
• AUTISM: UNDERSTANDING AND MANAGING ANGER by Andrew Powell
• THE PANICOSAURUS, THE RED BEAST AND THE DISAPPOINTMENT DRAGON by Kay Al-Ghani - These books aim to help children understand their emotions including anxiety, anger and disappointment.  

Useful websites 

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 people. 

• T: 0808 800 4104
• W: www.autism.org.uk

The Challenging Behaviour Foundation 

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

• W: www.challengingbehaviour.org.uk

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.

• W: www.ambitiousaboutautism.org.uk

Contact 

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

• W: www.contact.org.uk  

Autism Links

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

• W: http://autismlinks.co.uk

Accessing support for your child

Some parents may want to access support while they are awaiting assessment. The following services may be able to offer support:

Local Parenting Courses

These are provided in most local Children’s Centres. We recommend that parents access local courses as a first step. Parents can sign up to these courses directly. Your local early help team can also help you access a suitable course.

In Kensington & Chelsea, go to https://www.rbkc.gov.uk/kb5/rbkc/fis/family.page?familychannel=7 or call Di Thomas on 07875 125288.

Cheyne Child Development Service Therapy teams

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.

• T: 0208 102 4008

Speech and Language Therapy 

The Speech and Language Therapy team provide a service to pre-school children with speech, language, communication and/or swallowing difficulties.

Further information can be found here: https://clch.nhs.uk/services/speech-and-language-therapychildren or by telephoning the number below. 

If your child is school age, please speak to their class teacher or the school’s special educational needs co-ordinator about supporting your child’s language and communication skills or call on the number below.

• T: 0207 266 8777

Clinical Psychology

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

Parents are able to access this support once their child has attended their initial paediatric appointment within the service. 

Physiotherapy

Physiotherapy can enable your child to develop his or her motor skills and physical independence. The paediatric physiotherapist has detailed knowledge and experience of typical and atypical physical development in children.

If your child looks like they might need physiotherapy, the physiotherapist will be present at the assessment and will want to look at your child to assess his or her physical skills and talk to you about your concerns. The physiotherapist always works in partnership with families and other professionals. 

It is vital for all children that their parents, carers and physiotherapist work together as a team. The physiotherapist will show you activities that you can do at home, and train you so you can help your child’s physical development. 

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.  Resources are available on our webpage www.chelwest.nhs.uk/musictherapy     

• T: 0203 315 6472 

Mental Health Services (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.

• T: 0208 383 6123 (RBKC)
• W: CAMHS:: Central and North West London NHS Foundation Trust (cnwl.nhs.uk)

Local Services: Kensington and Chelsea

Visit the SEND Local Offer Autism Zone

Full of Life

Full of Life is a charity that supports and provides services to parents/carers and their disabled children/adults. They give free practical independent advice to parents/carers through their direct services including carers advocacy, family support, disability allowance and education. They also provide parent training groups and forums and services for young people (age 14+).

• T: 0208 962 9994
• E: office@fulloflifekc.com
• W: https://www.fulloflifekc.com/

Education: Full of Life Information and Advice and Support service (IASS)

The service offers independent advice, information and guidance on issues relating to SEN and Disability. The service is for parents of disabled children and young people.

• T: 020 8960 9064
• E: sen@fulloflifekc.com 
• W: https://www.fulloflifekc.com/sendiass/

K&C 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.

• T: 0207 289 7918
• E: admin@tellitparentsnetwork.co.uk
• W: https://tellitparentsnetwork.co.uk/

Early Help for families 

The Early Help Team work with families who have children aged 019, where there are indications of emerging difficulties and/or additional needs and offer a range of different interventions, including parenting work, sleep support, individual support and family health and wellbeing. 

• T: 020 7598 4608
• E: earlyhelp@rbkc.gov.uk
• W: www.rbkc.gov.uk/health-and-social-care/early-help-families

Accessing support for yourself

We know how stressful it can be for parents having concerns about your child and having to wait for assessments. It is very important that you try to seek support from friends and family.

If you are more isolated and do not have a supportive social network, there are other services available that can provide support. 

• Try to take time for yourself on a daily basis, even if just for a few minutes.
• If you are struggling to manage your feelings or are feeling very low, it is important that you speak to your GP about how you are feeling. They may be able to refer you to counselling services.

Useful links

• Every Mind Matters NHS: Every Mind Matters - NHS (www.nhs.uk)
• Talking Therapies NHS: https://www.nhs.uk/conditions/stress-anxietydepression/types-of-therapy/

Supporting your child in school

Many children awaiting an assessment will already be attending school. All Schools have a statutory duty to provide care for children with additional needs or disabilities and to make necessary adjustments to support children with disabilities.

If you are concerned about your child’s progress at school, speak to their class teacher and/or the school Special Educational Needs Coordinator (SENDCo).

You might want to ask them the following questions:

• What progress is your child making?
• What support is being put in place for your child?
• 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. Not all children will require an Education Health Care Plan (EHCP).

However, for some children, their needs cannot be met within the school’s current resources. For these children, schools may request an EHCP assessment. This is carried out by the local Education Authority. 

It is also important to note that not all children who receive a diagnosis of Autism Spectrum Disorder will need an EHCP. There are many support strategies that schools and nurseries can put in place to support a child with ASD. We provide further information on this in our assessment reports.

There are also outreach teachers who can provide schools with further advice on supporting children with ASD. 

In Kensington & Chelsea and Westminster, the Autism and Early Years Team (AEYT) provides outreach support to schools. Further information can be found on the following link: https://www.rbkc.gov.uk/kb5/rbkc/fis/advice.page?id=n3OtP7-bx4o

Preparing for the assessment

Parents have told us that they would like more information about the assessment process and what the assessment will involve, to help them know what to expect at the assessment. We understand that bringing a child for an assessment can be very anxiety-provoking for many parents.

We recommend that both parents attend the assessment where possible. If this is not possible, you are very welcome to bring a friend or relative to support you.  

Another common question asked by parents is how to prepare their child.  This will vary depending on the age of your child. 

We answer these questions more fully in our ASD Assessment Pathway Leaflet which you will receive before your assessment.

Any further questions?

Please don’t hesitate to contact us if you have any further questions or concerns.

For questions about your appointment or waiting time: contact the appointments coordinator on 020 3315 3121

Address

Chelsea and Westminster Hospital (main location)

The Cheyne Child Development Service

Doughty House, 369 Fulham Road, London, SW10 9NH 

• T: 020 3315 6488 

Parkview Centre for Health & Wellbeing 

The Cheyne Child Development Service 

Cranston Court 

56 Bloemfontein Road, White City, London, W12 7FG

• T: 020 3704 6060 

W: https://www.chelwest.nhs.uk/services/childrensservices/community-services/cheyne-child-developmentservice

This information has been developed for parents and carers of children awaiting an autism assessment. 

The number of referrals to our service has been steadily increasing in recent years, which has led to longer waiting times. This is a national problem affecting services across the UK. We know that this can be a stressful time for parents/carers, waiting for their child to be assessed. 

We have put together some information for you to support your child’s development while you wait. 

There are many things that parents and carers can be doing to help support their child’s development and many resources available for children and their families.  

What you can do while waiting for your child’s assessment

You may find it helpful to read about autism spectrum disorder or other difficulties that your child is experiencing (see information section below). 

If you are struggling with your child’s behaviour or other issues:

• Speak to your GP
• Contact your local children’s centre, online borough parenting courses or the Early help team in your borough; they should be able to support you in accessing a local parenting course.
• Access the online ‘Understanding Behaviour’ short video series developed by the Psychology Team at Cheyne https://vimeo.com/showcase/7307608

Access online information on managing other common issues

Sleep

• Home - The Sleep Charity
• https://www.familylives.org.uk/advice/your-family/specialeducational-needs/sleep-advice-for-parents-with-disabledchildren/

Feeding

• www.childfeedingguide.co.uk

Toileting

• https://www.eric.org.uk/potty-training-children-withadditional-needs

If your child is school age and not yet fully toilet trained, contact your child’s school nurse to access further support.

• If you are concerned about your child’s mental health, speak to your GP and ask for a referral to the local CAMHS service. Should you continue to be concerned you can contact the Early help team in your borough to request further support. 
• Speak to your child’s school about your concerns. Ask how your child is progressing and what support they have in place for your child. They may also be able to advise you on what approaches they have found useful at nursery or school, which you can try at home.  
• Look on your council’s Local SEND Offer website to find out what other support/services are available locally. Many services are inclusive and do not require a diagnosis to be able to access them. 
• If your child has difficulties with speech and language or communication, the local offer websites have information on communicating with your child and encouraging you child’s play skills under the section on SEND/Health/Speech and Language therapy.
• You can also look at the website  Hungry Little Minds – Simple fun, activities for kids aged 0 – 5 (campaign.gov.uk) which has lots of ideas/activities to support play and communication. 
• Think about your own needs. This can be a stressful and lonely time for parents. Try to seek support from friends and family. If you are more isolated and do not have a not have a supportive social network, there are other services available that can provide support. 

If you have specific questions or concerns, you can contact the admin team on 0203 315 3121 and your call will be directed to the appropriate professional. 

Closer to the time of the assessment, you may find it helpful to give your child some information about the assessment. We have provided further information on preparing your child for the assessment.

Information resources

There is lots of information now available on the internet and it can be overwhelming to know where to start or which information is helpful. Not all information will be helpful. We have put together a list of books and websites that we would recommend if parents want to access information while waiting for their child’s assessment. 

Useful books 

• MORE THAN WORDS: HELPING PARENTS PROMOTE COMMUNICATION AND SOCIAL SKILLS IN CHILDREN WITH AUTISM SPECTRUM DISORDER by Fern Sussman - A useful guide for younger and non-verbal children
• SENSORY AND MOTOR STRATEGIES by Corinna Laurie - Practical ways to help children and young people on the autism spectrum learn and achieve
• IT CAN GET BETTER by Paul Dickinson and Liz Hannah - Dealing with common behaviour problems in young children with autism
• AUTISM: UNDERSTANDING AND MANAGING ANGER by Andrew Powell
• THE PANICOSAURUS, THE RED BEAST AND THE DISAPPOINTMENT DRAGON by Kay Al-Ghani - These books aim to help children understand their emotions including anxiety, anger and disappointment. 

Useful websites 

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 people. 

• T: 0808 800 4104
• W: www.autism.org.uk

The Challenging Behaviour Foundation 

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

• W: www.challengingbehaviour.org.uk

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.

• W: www.ambitiousaboutautism.org.uk

Contact 

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

• W: www.contact.org.uk  

Autism Links

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

• W: http://autismlinks.co.uk

Accessing support for your child

Some parents may want to access support while they are awaiting assessment. The following services may be able to offer support:

Local Parenting Courses

These are provided in most local Children’s Centres. We would recommend that parents access local courses as a first step. Parents can sign up to these courses directly. Your local early help team can also help you access a suitable course.

In Westminster, go to: https://www.westminster.gov.uk/children-and-education/ parenting-groups-and-courses or email earlyhelpparentingteam@westminster.gov.uk 

Cheyne Child Development Service Therapy teams

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.

• T: 0208 102 4008

Speech and Language Therapy 

The Speech and Language Therapy team provide a service to pre-school children with speech, language, communication and/or swallowing difficulties. Further information can be found here: https://clch.nhs.uk/services/speech-and-language-therapychildren or by telephoning the number below. 

If your child is school age, please speak to their class teacher or the school’s special educational needs co-ordinator about supporting your child’s language and communication skills or call on the number below.

• T: 0207 266 8777

Clinical Psychology

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

Parents are able to access this support once their child has attended their initial paediatric appointment within the service. 

Physiotherapy

Physiotherapy can enable your child to develop his or her motor skills and physical independence. The paediatric physiotherapist has detailed knowledge and experience of typical and atypical physical development in children.

If your child looks like they might need physiotherapy, the physiotherapist will be present at the assessment and will want to look at your child to assess his or her physical skills and talk to you about your concerns. The physiotherapist always works in partnership with families and other professionals. 

It is vital for all children that their parents, carers and physiotherapist work together as a team. The physiotherapist will show you activities that you can do at home, and train you so you can help your child’s physical development. 

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.  Resources are available on our webpage www.chelwest.nhs.uk/musictherapy     

• T: 0203 315 6472 

Mental Health Services (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.

• T: 0203 204 5500 (Westminster) 
• W: CAMHS :: Central and North West London NHS Foundation Trust (cnwl.nhs.uk)

Local Services: Westminster

NEW: Visit the SEND Local Offer Autism Zone via SEND local offer Westminster  

Early support for children and families can be accessed through Westminster Early Help 

• T: 020 7641 5923 
• E: cdrakewilkes@westminster.gov.uk
• W: Early Help | Westminster FIS
• Address: Family Hub, 1 Bessborough Street, SW1V 2JD

Education: 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.       

• T: 0207 641 5355      
• E: iass@westminster.gov.uk                
• W: www.westminsteriass.co.uk  

Caxton Youth Organization

Caxton Youth Organization offers evening activities for young people aged 11-25, who live in Westminster and have disabilities.  

• T: 0207 834 1883
• E: caxtonyouthorg@btconnect.com
• W: www.caxtonyouth.org

Accessing support for yourself

We know how stressful it can be for parents having concerns about your child and having to wait for assessments. It is very important that you try to seek support from friends and family.

If you are more isolated and do not have a supportive social network, there are other services available that can provide support. 

• Try to take time for yourself on a daily basis, even if just for a few minutes.
• If you are struggling to manage your feelings or are feeling very low, it is important that you speak to your GP about how you are feeling. They may be able to refer you to counselling services. 

Useful links

• Every Mind Matters NHS: Every Mind Matters - NHS (www.nhs.uk)
• Talking Therapies NHS: https://www.nhs.uk/conditions/stress-anxietydepression/types-of-therapy/

Supporting your child in school

Many children awaiting an assessment will already be attending school. All Schools have a statutory duty to provide care for children with additional needs or disabilities and to make necessary adjustments to support children with disabilities.

If you are concerned about your child’s progress at school, speak to their class teacher and/or the school Special Educational Needs Coordinator (SENDCo).

You might want to ask them the following questions:

• What progress is your child making?
• What support is being put in place for your child?
• 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. Not all children will require an Education Health Care Plan (EHCP). However, for some children, their needs cannot be met within the school’s current resources. For these children, schools may request an EHCP assessment. This is carried out by the local Education Authority. 

It is also important to note that not all children who receive a diagnosis of Autism Spectrum Disorder will need an EHCP. There are many support strategies that schools and nurseries can put in place to support a child with ASD. We provide further information on this in our assessment reports.

There are also outreach teachers who can provide schools with further advice on supporting children with ASD. 

In Kensington & Chelsea and Westminster, the Autism and Early Years Team (AEYT) provides outreach support to schools. Further information can be found on the following link: https://www.rbkc.gov.uk/kb5/rbkc/fis/advice.page?id=n3OtP7-bx4o

Preparing for the assessment

Parents have told us that they would like more information about the assessment process and what the assessment will involve, to help them know what to expect at the assessment. We understand that bringing a child for an assessment can be very anxiety-provoking for many parents.

We recommend that both parents attend the assessment where possible. If this is not possible, you are very welcome to bring a friend or relative to support you.  

Another common question asked by parents is how to prepare their child. This will vary depending on the age of your child. 

We answer these questions more fully in our ASD Assessment Pathway Leaflet which you will receive before your assessment.  

Any further questions?

Please don’t hesitate to contact us if you have any further questions or concerns.

For questions about your appointment or waiting time: contact the appointments coordinator on 020 3315 3121

Address

Chelsea and Westminster Hospital (main location)

The Cheyne Child Development Service

Doughty House

369 Fulham Road, London, SW10 9NH 

Tel. 020 3315 6488 

Parkview Centre for Health & Wellbeing 

The Cheyne Child Development Service 

Cranston Court 

56 Bloemfontein Road, White City, London, W12 7FG

T: 020 3704 6060 

W: https://www.chelwest.nhs.uk/services/childrensservices/community-services/cheyne-child-developmentservice

How long does the cast take to dry?

The cast will set in two to three minutes but takes about 20–45 minutes to dry completely.

Do not try to speed up the process by using a hairdryer or other appliance. During this time please take extra care to protect the cast, do not rest it on a hard surface or write on it until it is dry.

What should you look out for?

The cast becoming too tight. If this happens you may notice:

• Swelling of the fingers/toes
• Numbness or pins and needles in the fingers/toes
• Pain
• White or blue discolouration of the fingers/toes and possible coldness

Remember—if the cast is hurting it needs attention!

The first thing to do is to raise the limb.

• Arm cast: Rest the cast on a pillow/cushion so that the hand is higher than the elbow.
• Leg cast: Rest the cast on a pillow/cushion so that the foot is higher than the hip.

If symptoms do not improve after one or two hours then please return to us or your nearest A&E Department.

Do not attempt to remove the cast yourself. Wherever possible do rest the cast in this way to avoid swelling.

What should you look out for?

The cast becoming too loose, cracked or soft. Under normal circumstances you should not be able to move the cast up, down or around your limb.

It should feel comfortable and should not be cracked at any point. If you notice any of these things, and the Fracture Clinic is unable to see you, please go to your nearest A&E Department.

Important precautions:

• Never use anything to scratch under the cast. The slightest scratch could develop into a serious infection.
• Never trim or cut down the length of the cast yourself, or attempt to tuck in extra padding.

Can the cast get wet?

No! You should never allow the cast to become wet.

Can the cast be walked on?

Only if the doctor says it is okay and the cast is dry.

Can exercise continue?

Yes, exercise should continue in order to avoid stiffness in unaffected joints. We recommend the following gentle movements every couple of hours during the day.

Arm cast:

• Wiggle your fingers
• Bend and straighten the elbow joint (only if cast is below elbow)
• Rotate the shoulder very gently

Leg cast:

• Wiggle the toes
• Bend and straighten the knee (only if the cast is below the knee)
• Gently clench the muscles in the back of the calf and thigh to improve blood flow.

Taking care of the cast will help the injury heal properly.

Risks

The risks of having a cast are Deep Vein Thrombosis (DVT), Compartment Syndrome and pressure sores.

By following advice given in this leaflet and by your doctor, these risks can be reduced.

Benefits

The benefits of having a cast will have been discussed with your doctor during consultation. The main benefit of having a cast is to immobilise the limb to prevent further damage and to promote healing.

After your cast has been removed

You may find that the arm/leg is thin and feels strange. Some stiffness and discomfort may also be felt. Don’t worry, this is normal and will improve as soon as the muscles get stronger.

The skin may be flaky, dry and itchy. A gentle wash or bath, followed by a moisturising cream, will help.

A tubigrip (elasticated stocking) may have to be worn to give support to the arm/leg. This also helps to prevent swelling. This needs to be removed at night.

Remember the arm/leg needs to be raised when sitting and rings should not be worn if the hand is swollen.

Contact sports should not be played until the doctor says it is safe to do so. However swimming is recommended in nearly all cases. Your doctor will advise you about this.

If there is a problem with the cast please call the Fracture Clinic on 020 3315 5204 or your GP. Alternatively, go to your nearest A&E Department.

If you are not registered with a GP, we would advise you do so as soon as possible:

• Go to www.nhs.uk
• Click GPs under the heading ‘Services near you’
• Enter your home postcode in the box and click Find GP practices —this will provide you with a list of GPs close to your home

If you do not have internet access, your local pharmacy will be able to give you a list of GPs in your area.

This leaflet has been written by staff working in the Children’s Fracture Clinic at Chelsea and Westminster Hospital. We hope it answers some of your questions.

If after reading it you have any further questions, please speak to your GP or contact the Fracture Clinic.

Contact information

Fracture Clinic

Chelsea and Westminster Hospital

369 Fulham Road, London, SW10 9NH

T: 020 3315 5204

On this page

• Before the procedure
• On the day of the procedure
• After the procedure
• Frequently asked questions (FAQs)

Before the procedure

Arrival time

If your appointment is in the morning please arrive by 7:15am. If it is in the afternoon please arrive at 12:15pm. Please note this is not the time of the operation, this is the admission time to the ward. The theatre team will see all the patients and then decide the order of the list. Please be prepared to stay in the hospital for the majority of the day in case of delays. 

Fasting (nil by mouth)

7:15am arrivals

Your child must not eat or drink after the following times:

• No food, milk or juice after 2:30am
• Breast milk only until 4:30am
• Water only until 6:30am

12 noon arrivals

Your child must not eat or drink after the following times: 

• No food, milk or juice after 7:30am
• Breast milk only until 9:30am
• Water only until 11:30am 

When your child arrives on to the ward, they will be greeted by the receptionist to verify your details and check you in to the ward—you'll then be asked to take a seat and wait for a member of staff to see you.

On the day of the procedure

Preoperative assessment

Your child’s anaesthetist will discuss with you the types of anaesthetic that can be used, and the benefits and risks of the preferences.

The nursing team will see you to: 

• Do your child’s observations 
• Check your child’s allergy status 
• Complete your admission paperwork 
• Weigh your child 
• Give your child a hospital wristband

The surgical team will ask you, as your child’s guardian, to sign the consent form.

After you have seen all the various teams, your child will be asked to get changed into a hospital gown.

Play specialist

The Health Play Specialists will prepare your child for their procedure by:

• Explaining the process of attending day surgery and showing pictures of the areas they will go to
• See and play with some of the medical equipment
• Describing what to expect when they go to sleep and when they wake up
• Providing extra support if your child has complex/ special educational needs and disabilities.

After the operation the Play Specialist will come to see you and your child and give resources to distract and occupy them whilst waiting to be discharged.

Preparation will allow your child to explore medication equipment and ask questions in a safe environment which in turn can help lower fear and anxiety. 

Please ask a member of the team if you would like Play Specialist input before or after your child has their operation.

What to expect

You and your child can watch this demo about what to expect before the operation.

• Learn more about having an anaesthetic
• Your child’s general anaesthetic (leafet)

Premedication

Some children/young adults might require premedication before their procedure. The anaesthetist will discuss this with you on the day of surgery. Premedication is a term for drugs which are given before an anaesthetic to help your child to relax. They may make your child more drowsy after the operation.

Theatre list

Operation times are staggered, so you will be asked to wait until your child is called to theatre. A number of factors, including disability, age and medical history, are taken into consideration when deciding the order of the theatre list.  

Anaesthetic room

When the theatre team are ready, you and your child will go to the anaesthetic room. A nurse, an anaesthetist and an anaesthetic nurse will be present, along with other staff such as an operating department practitioner, medical student(s) etc.

General anaesthetic 

There are two ways of starting a general anaesthetic—breathing an anaesthetic gas or having medication through a cannula (a plastic straw in the back of the hand that goes into the vein). Depending on the circumstances, it might be possible for you to choose which to have.

The cannula will stay in after the operation is finished and will be taken out just before you leave the hospital. This is so we can give your child more medications if needed. 

After your child has been put to sleep, for your child’s safety you will be asked to wait in the waiting room until the surgery is complete. No photos or video recording devices are allowed to be used in the anaesthetic room and you will not be allowed to stay and watch the procedure.

Monitoring patients in the operating theatre

The team will closely monitor your child throughout the operation—this includes oxygen levels (saturations), heart rate, breathing rate and other vitals, to ensure your child is kept safe at all times. 

Recovery

After the operation, your child will be transferred to the child friendly recovery area. The time necessary for recovery is unique to every child and your child’s safety is our priority. One parent will be called to stay with the child shortly after they arrive from the operating theatre. In this area we keep your child safe, making sure they are not in pain or feeling nauseous (which sometimes can be a side effect of general anaesthesia).

The surgeon will come to explain how the procedure went and details of the aftercare. Our nursing staff will answer your questions at any time.

While your child is in the recovery area, nurses will closely monitor them as they start to wake up. They will monitor your child’s vital signs and, once they are safe, your child will be transferred to the ward.

When will your child wake up?

The length of time a child spends in recovery depends on the type of surgery they’ve had, the response to surgery and anaesthesia, and any medical conditions. It is important to remember that each child wakes up differently.

Postoperative information

Your child will be monitored on Saturn Ward after recovery. Postoperative recovery time is usually one hour if your child fulfils the nurse-led discharge criteria. However, this can vary and is dependent on your child’s condition and the procedure they have had. Here are some examples of procedures and the typical length of stay postoperatively:

• Tonsillectomy: 6 hours
• Adenoidectomy: 2 hours
• Rectal biopsies: 2–4 hours  

Some pain or discomfort is to be expected following most procedures. Pain relief (analgesia) will be discussed with you for your child. This can include paracetamol, ibuprofen, morphine, for example. Please note, if your child has morphine, they will need to be monitored for 2–4 hours.

Some children may have a sore throat after surgery, but this should settle down shortly after surgery. 

Depending on the procedure your child has had and/or if your child has pre-existing medical conditions, they may need to be reviewed by an anaesthetist and/or a surgeon after surgery. 

Your child may need to eat and drink after surgery and may need to pass urine.

Your child will receive a discharge letter once they are ready to go home and this may be accompanied with some medication to take home (TTOs), which will be explained to you.

After the procedure

General wound care 

To ensure optimal healing of your child’s wound, we advise that you:

• Ensure the wound site is kept clean and dry for 5–7 days—after this time, your child can wash as normal
• Do not let your child pick at their wound—allow any scabs to detach naturally from the skin, as pulling them off may re-open the wound

Before discharge, you will be informed by your doctor whether or not you need to come back for your child to have their sutures (stitches) removed.

When to seek medical attention

• If the wound re-opens
• Any sign of infection:
   
• Redness, pain or heat around the wound site
• Discharge, oozing or an offensive smell from wound 
• Swelling around wound site
• A temperature of 38°C or above, with or without the above symptoms

Please note: Minimal bleeding is normal, however, if the dressings are soaking through you should seek medical attention.

ENT aftercare

If your child has had an ear, nose and throat (ENT) procedure, please note the following:

• Following grommet insertion, it is normal to notice a small amount of blood from your child’s ear on the morning after the operation
• Your child may have a sore throat, ear pain, bad breath, voice changes and/or white patches in their throat after their surgery—these symptoms can last for up to two weeks after their tonsils or adenoids have been removed 
• It is important that your child is given regular pain relief—typically paracetamol and ibuprofen for the first week after the operation and other medications prescribed by the doctor
• Eating and drinking is very important after surgery as it will help to clean and heal the throat—encourage your child to drink plenty of fluids throughout the day for the first few days following surgery. There are no restrictions on what your child can eat—your child may prefer to eat softer foods, but it is also fine for them to eat hard foods, such as toast or cereals. 
• If your child is bleeding following a tonsillectomy, take them to your nearest A&E
• If your child has had their adenoids removed, do not let them sniff or blow their nose for two weeks
• Your child’s surgeon will give you a guide on how long your child should be off school

When to seek medical attention after an ENT procedure:

• Rash or bleeding from the nose or mouth, or in your child’s vomit
• Frequent swallowing (this may indicate bleeding)
• Vomiting more than four times within the first 24 hours after the surgery
• Not tolerating fluids
• Temperature of 38°C or more

Dental aftercare

• Once your child’s tooth has been removed, there will be a hole in the jawbone—blood clots will form initially before healing completely
• Your child will have been given a local anaesthetic during the procedure to minimise pain during and after the operation—this is given into the gum where the tooth is removed to cause temporary numbness to the area inside the mouth
• Blood-stained saliva is normal for the first 24 hours after tooth extraction
• Pain, discomfort and swelling to cheeks, jaw and neck are common during the first week after dental surgery—paracetamol and ibuprofen can help to provide relief, you will need to buy this from your local pharmacy
• A soft diet is encouraged for the first 48 hours after surgery and the following avoided for the first 24 hours:
• Foods that are very hot, cold, hard or sharp
• Mouthwashes or spitting forcefully
• Playing sport or exertive activity
• Touching or sucking the wound
• Take care to ensure your child does not bite or chew the cheek, lip or tongue
• Oral hygiene is important, particularly for the first few weeks after the procedure—gentle tooth-brushing is recommended as soon as possible, and mouthwash should be used for children above 5 years from 24 hours after the procedure

When to seek medical attention after a dental procedure:

• New or increased bleeding
• Pain uncontrolled with regular pain relief
• Increased swelling
• Not eating or drinking
• Temperature of 38°C or more

Orthopaedic/plastic aftercare

• It is important that your child is given regular pain relief—paracetamol and ibuprofen in the first few days of surgery
• Limb elevation can help to reduce pain and swelling
• Your child will likely have a cast on—casts following surgery are typically not waterproof and will need to be kept dry
• Your child can shower, provided you are able to seal water from getting to the cast, otherwise sponge baths to maintain hygiene are recommended

When to seek medical attention after an orthopaedic/plastic procedure:

• Increasing pain and swelling to limb
• Changes in sensation, strength or skin colour
• Temperature of 38°C or more
• If the cast comes off 

FAQs

What are TED stockings?

TED (thromboembolus-deterrent) stockings, also known as compression stockings, are a type of anti-embolism stocking which promotes increased bloodflow velocity in the legs and helps prevent  deep vein thrombosis (DVT).

A DVT can sometimes lead to a more serious condition called a pulmonary embolism, and wearing compression stockings reduces the risk of this happening.

TED stockings are typically applied to patients who are 16 or older, and it is mandatory, regardless of the procedure, unless they are having orthopaedic surgery on both legs. Sometimes TED stockings are applied to younger patients.

Pregnancy test/screening

All female patients and patients assigned female at birth aged 12–55, and those who have started menstruation younger than age 12, may need a pregnancy test. The doctor will discuss this with you.

Pregnancy testing allows us to provide you with appropriate information to make a decision on what to do next.

Pregnancy is just one factor in the decision to have an operation. If your child is pregnant, the team will discuss the implications of this with you. You will be able to decide together whether to go ahead with surgery, to consider another treatment, or to delay treatment.

It is still possible for your child to be pregnant while menstruating (having a period) in the early stages of pregnancy. This is why is it hospital policy is to test all female and patients assigned female at birth aged 12–55 to ensure we provide the best possible care.

Diet/food postoperatively

After surgery, sandwiches, water, apple juice, yoghurts and fruits are available to all patients unless it is contraindicated (not recommended).

• For dental patients, apple juice is not advised—the patient is allowed to eat straight after surgery or when ready.
• For ENT patients, any foods or drinks that red in colour are strictly not allowed. This enables the team to monitor for any blood that might appear in vomit.

Parking

There is a reduced parking fee of £10 on the day of your child’s surgery. The nursing team can assist you with this.

Combining procedures

If your child is on a waiting list for another procedure, it may be possible to combine these procedures. Please discuss this with both leading consultants before the planned date of surgery.

Can I bring my other children?

No—please do not bring other children to the hospital on the day of your child’s procedure. We do not have facilities to look after other children besides the patient. You will also need to concentrate on your child who is having surgery.

Can one of my other children be treated on the same day?

Unfortunately, not. Siblings must be scheduled for operations on different days. You will need to concentrate on one child at a time.

I have another question 

Please contact the admissions team on 020 3315 3321 or 020 3315 8858.