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Cheyne Child Development: While you wait leaflet - School age (Kensington & Chelsea)

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

Feeding

Toileting

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. 

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.

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.

Contact 

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

Autism Links

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

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.

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+).

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.

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.

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. 

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

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