Preparing for an autism assessment

Autism assessments

The Cheyne Child development service offer’s autism assessments for children and young people aged 2-18 years with a GP in the following postcodes who meet our criteria for an assessment:

  • Hammersmith and Fulham: SW6, W6, W12, W14, NW10 (Partial)
  • South Kensington and Chelsea: SW6, W6, W12, W14, NW10 (Partial)
  • South Westminster – SW1

Your child or young person may have been referred by their nursery, school, GP or health visitor. We can’t accept referrals from parents themselves.

This assessment can help you and your child or young person understand some of the challenges or difficulties they are facing and also identify some of their strengths.

At Cheyne our autism assessments are focussed on the whole person approach, which is also known as a holistic approach. This is when you view every aspect of your child or young person's care as equal. 

Waiting times

We are aware that waiting times are long and this can be a difficult time for families. Over the last five years, we've seen referrals to our service increase and there are lots of different reasons for this. We know it can be hard for families waiting for answers. We want you to know that over the last two years waiting times for families have gone down at the Cheyne Child Development Service and our waiting times, whilst still longer than we would like are now below national averages. 

How you can help us keep waiting times down

We are asking families to help us manage the waiting list and keep waiting times down by helping us with the following:

  • If you move out of the area or no longer need an assessment with us please let us know as soon as possible.
  • If you are unable to make an appointment for any reason please let us know as soon as possible so that we can re-arrange the appointment for you.
  • If you don’t turn up to an appointment without telling us in advance it is possible that your child will be discharged from the service and will need a new referral meaning a longer wait for your child to be seen.
  • Please complete any questionnaires that are sent to you as quickly as possible and return them to the service so we have all the information needed for your appointment.
  • Please ensure your contact details such as phone number, home address and email address are up to date with us.
  • If we are unable to make contact with you to arrange an appointment it is possible that your child will be discharged from the service and we will need a new referral meaning a longer wait for your child to be seen.
  • Please let us know if your circumstances change e.g. if there are any significant child protection concerns or if your child has changed school or is no longer attending school. Please seek advice from your GP or local CAMHS service if your child requires a review or support for their mental health needs.

Support whilst waiting for an assessment

We know the importance of supporting your child's needs as early as possible. Your child should get the support they need at school or at home, even if they haven't seen a specialist or even had an assessment. Support should be based on what they need help with in their daily lives rather than based on a diagnosis. But we do understand that a diagnosis can be important to families for many other reasons.

We hope that some of the resources in our support whilst waiting page can help empower you to understand and support your child. This can be found on the following web page:

Risk and support

Drawing by Anjali

The Cheyne Child Development Service is not an emergency service. Our service does not manage or monitor risk issues for children/young people on our autism assessment waiting lists.

However, it is important that we are informed of any change in risk or any safeguarding concerns that arise for children/young people awaiting assessment within our service. In such cases, we will review the safeguarding concerns and may consider prioritising assessments or referring on to more appropriate services. We can also support parents/carers to access appropriate help.

Please use the contact details below if you have any concerns about your child’s safety or wellbeing:

  • If you have any concerns about your child whilst they are on our waiting list please contact your GP in the first instance.
  • If you have escalating concerns about your child's mental health or behaviour, or concerns around risk, please contact the following:
    • 1) The Cheyne Autism Pathway co-ordinator on 020 3315 6571.
    • 2) If your child is open to a local CAMHS team, contact them and ask to speak to the duty and liaison team.

FOR URGENT CONCERNS:

If you are concerned about immediate risk to your child or someone else, contact:

1) CNWL Single Point of Access (SPA) on 0800 023 4560 - a 24-hour crisis line providing urgent mental health support for families in Brent, Hillingdon, Harrow, Kensington & Chelsea, and Westminster.

2) West London NHS Trust - Crisis Line - 0800 328 4444 - a 24-hour crisis line for children/young people in Ealing, Hounslow and Hammersmith & Fulham.

3) For imminent risk, contact 999 or attend your local Accident & Emergency Department.

Autism (ASD) pathways

Our service is divided into 2 different Assessment pathways depending on how old your child is when they are accepted for an assessment. You will be notified in your letter from us as to which pathway they are on. Click on the links below for more information about the pathways.

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.

Cheyne pre-school ASD coordinator:

  • Telephone: 020 3315 8839
  • Email: chelwest.ccdspreschoolasd@nhs.net

Cheyne school-age ASD co-ordinator

  • Telephone: 020 3315 5671
  • Email: chelwest.ccdsschoolageasd@nhs.net

Pre-school autism (ASD) pathway

Picture of the Cheyne child development service by Hannah, age 6

What is the pre-school autism (ASD) pathway?

The pre-school ASD pathway involves assessment, diagnosis, support and intervention for children referred to the Cheyne Child Development Service who present with social communication difficulties who are under the age of 4 years 6 months at the time of the referral.

By completing the assessment we hope to gain an understanding of your child’s strengths, differences and difficulties across three areas: social interaction, social communication and social imagination. The assessment will determine if a diagnosis of Autism (ASD) will be useful in explaining your child’s pattern of difficulties.

Please watch this video for more information:

 What is autism (ASD)?

Autism (ASD) is a neurodevelopmental condition. This means that autistic people think and work differently. Their brains work and develop in a different way. Autism influences how people experience and interact with the world. Individuals with ASD can have difficulties with social interaction, social communication and social imagination.  Please see our autism page for more information and resources Autism — Chelsea and Westminster Hospital NHS Foundation Trust

This video may be helpful to watch:

What happens when I am accepted onto the pre-school ASD pathway?

  • When you are accepted onto the pathway we will send a letter stating that we have accepted the referral onto our autism pathway.
  • We will get consent from you to contact the nursery or school directly to ask them to complete questionnaires.
  • We will want to make sure that we have the correct contact details for you. Please could you make sure that we have the correct phone number, email and address for you. We will also need to make sure we have the correct GP details for you. If any of these change whilst you waiting for an assessment please let us know.
  • If we try to contact you, please do call or email us back. If we try to contact you and we do not hear back from you we may then discharge your child from our service.
  • We will also send you a leaflet explaining the preschool ASD pathway and we will send you some information about what support you can access whilst you are waiting.
  • If you change your mind or have had an assessment done elsewhere please let us know so that we can update our records.

 

What can I do whilst I am waiting for an assessment?

Your child should get the support they need at school or at home, even if they haven't had an assessment. Support should be based on what they need help with in their daily lives rather than based on a diagnosis.  We hope that some of the resources in our support whilst waiting page can help empower you to understand and support your child. This can be found on the following web page:

What information will you need before an appointment?

  • Forms and questionnaires
    • These will be sent to you and sent to your child or young person's nursery or school.
    • These forms and questionnaires will have lots of questions asking about your child or young person's behaviours and difficulties.
    • We will 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.
    • It is really important this is returned back to us before the assessment appointment.

Pre-assessment workshops

  • To help support you whilst waiting we will invite you to join one of our pre-assessment workshops that are run by our Clinical Nurse Specialists (CNS).
  • These workshops are run at different sites and we will inform you when we contact you which site your workshop will be at.
  • The parent may be offered an individual phone contact appointment if they contact the CNS team and are not able to attend the group appointments.
  • These workshops cover various topics (reasons for referral, understanding autism, information about the assessment pathway, and possible outcomes such as autism diagnosis).
  • Additional advice offered including :
    • Accessing speech and language therapy support
    • SEND Local Offer and Family Hub support
    • Parent and carer forums
    • Accessing educational nursery and school placements
  • Advice and resources are provided including
    • Sleep advice
    • Feeding concerns
    • Toilet training
  • Parenting courses to assist with behaviour challenges
  • Parents are provided with CNS team email address should they have further queries or need for support

How can I prepare for an appointment?

There is no need to prepare anything in particular for the appointment. However some families may find the following helpful:

  • Learn more about autism
  • Get the ball rolling on intervention services
  • Arrange support for the day of the appointment
    • Help prepare your child by talking to them about what to expect.
    • Many parents also find the diagnosis process emotional and overwhelming. Rather than go it alone, consider inviting someone you trust to accompany you, help take notes on what was said and make sure your questions get answered.
  • Gather your child’s information ready for the appointment
    • It can be helpful to have the red book available at the appointment. 
    • We have created a document which will be sent out to you once your appointment is scheduled. This is called the Cheyne Pre-assessment questionnaire.
    • You might find it helpful to complete this ahead of the appointment and bring it with you on the day.
    • There is no need to send us the document, this document is for you.
    • Download the pre-assessment questionnaire

 Booking an appointment

  • You will be contacted by a member of our team when we are ready to book the appointment to check that you can attend the appointment we will be offering.
  • The appointments will be on a Tuesday, Wednesday or Thursday
  • Appointment may be at our Chelsea site or our Parkview site. Your appointment letter will state which site your appointment will be at.
  • When booking an appointment, you will be asked if you need an interpreter. Please let us know if that would be helpful.
  • Please don’t bring any other children to the appointment as we want you to focus on your child that is having their assessment.
  • We recommend that you bring along someone who can support you during the appointment, this could be a partner, relative or friend.
  • If you need any adaptations to be made for you for the appointment please let us know and we will do our best to help.
  • If you confirm that you will be attending the appointment and then don’t show up without letting us know your child will be discharged from our service and a new referral will be needed.
  • If your child is unwell on the day of the appointment please call us to let us know as far in advance as possible and we can reschedule the appointment.

What to bring to an appointment

We would encourage you to bring:

  • Questions or concerns you have.
  • Toys or books for your child or young person to keep them entertained as they are waiting.
  • Snacks or drinks if you think your child or young person will get hungry.
  • A completed copy of the Cheyne Pre-assessment questionnaire. This is not required, but you may find this helpful.

 

The autism assessment appointment

Face-to-face appointments are a chance for us to meet your child or young person. You may be asked to go to more than one appointment. We want to get as much information as possible before assessing your child. This is a completely normal part of the process. It helps us to get more information about your child or young person. Families may be invited to a number of different appointments depending on their child’s needs.

This video explains more about these appointments:

In general there is an initial appointment where we get to know your child better. During the assessment, your child will engage in a playful interaction with the assessor with lots of toys and objects. This allows for close observation but also provides a comfortable and interactive environment. Through this engaging play session, we aim to gain valuable insights into your child’s behaviour and responses. Autism is a broad condition, and each child’s journey is unique.

This appointment may consist of the following:

  • 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.
  • Physical examination and developmental assessment
  • Autistic Diagnostic Observation Schedule (ADOS): A structured play and question-based assessment completed with your child.

Who is involved in assessing my child on the preschool autism (ASD) assessment pathway?

The assessment is usually completed by a multi-disciplinary team that may be made up of the following professionals:

  • Community paediatrician: A paediatrician with a special interest in child development
  • Speech and language therapist: A specialist speech and language therapist experienced in the assessment of social communication difficulties.

Are any other agencies involved?

  • We may contact your child's school or 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.

  Outcome of the assessment

Once your child has been assessed, we will arrange an appointment to discuss the findings of your child or young person's assessment. Sometimes this is on the same day as the assessment and at other times it is on a different day. At this appointment we will also talk about your child's strengths, differences and needs. If you think it will be helpful, you can bring a family member or friend. 

If your child or young person does not meet the criteria for an autism diagnosis, we will explain why and will talk through with you about their individual strengths and needs.

If your child or young person does meets the criteria for an autism diagnosis, we can tell you more about their diagnosis and the support that is available.

Regardless of the outcome, we will give you information and resources to help your child or young person's needs. These will help you find the right ongoing support for your child or young person. 

Whatever the outcome of the assessment process, it's important to celebrate your child or young person for who they are. This is only one part of the journey for your child or young person. 

Make sure to celebrate their strengths and what makes them unique. 

 Who should I contact if I need further information?

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

Cheyne Pre-school ASD Coordinator:

  • Telephone: 020 3315 8839
  • Email: chelwest.ccdspreschoolasd@nhs.net

What will happen after the assessment?

This video explains a little bit more about what happens after the assessment.

Following your appointment the following will happen:

  • At the end of the appointment you will be given a report summarising the assessment findings and the action plan. 
  • A more detailed report will be sent out and shared with you, the referrer and your GP. We will agree with you as to whether we will send the report to your child’s school or nursery.
  • We will refer your child to other services if required.
  • If your child receives a diagnosis of autism you will be invited to our post-diagnosis support groups and you will be offered a post diagnosis appointment.
  • Please see our "what is autism" and "receiving a diagnosis page" for more information Autism — Chelsea and Westminster Hospital NHS Foundation Trust

 

School age autism (ASD) pathway

 

Picture of Cheyne Child development service by Nela, age 5

What is the school-age autism (ASD) pathway?

The School ASD pathway involves assessment, diagnosis, support and intervention for children referred to the Cheyne Child Development Service who present with social communication difficulties who are over the age of 4 years 6 months at the time of the referral.

By completing the assessment we hope to gain an understanding of your child’s strengths, differences and difficulties across three areas: social interaction, social communication and social imagination. The assessment will determine if a diagnosis of Autism (ASD) will be useful in explaining your child’s pattern of difficulties.

 What is autism (ASD)?

Autism (ASD) is a neurodevelopmental condition. This means that autistic people think and work differently. Their brains work and develop in a different way. Autism influences how people experience and interact with the world. Individuals with ASD can have difficulties with social interaction, social communication and social imagination.  Please see our autism page for more information and resources Autism — Chelsea and Westminster Hospital NHS Foundation Trust

What happens when I am accepted onto the school-age ASD pathway?

  • When you are accepted onto the pathway we will send a letter stating that we have have accepted the referral onto our autism pathway pending us receiving a School Functioning Questionnaire.
  • We will get consent from you to contact the school directly to ask them to complete questionnaires.
  • We will want to make sure that we have the correct contact details for you. Please could you make sure that we have the correct phone number, email and address for you. We will also need to make sure we have the correct GP details for you. If any of these change whilst you are waiting for an assessment please let us know.
  • If we try to contact you, please do call or email us back. If we try to contact you and we do not hear back from you we may then discharge your child from our service.
  • We will also send you a leaflet explaining the school age ASD pathway and we will send you some information about what support you can access whilst you are waiting.
  • If you change your mind or have had an assessment done elsewhere please let us know so that we can update our records.

What can I do whilst I am waiting for an assessment?

Your child should get the support they need at school or at home, even if they haven't had an assessment. Support should be based on what they need help with in their daily lives rather than based on a diagnosis.  We hope that some of the resources in our support whilst waiting page can help empower you to understand and support your child. This can be found on the following web page:

What information will you need before an appointment?

  • Forms and questionnaires
    • These will be sent to you and sent to your child or young person's school.
    • These forms and questionnaires will have lots of questions asking about your child or young person's behaviours and difficulties.
    • We will 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.
    • It is really important this is returned back to us before the assessment appointment.

 

Pre-assessment telephone appointment

  • To help support you whilst waiting we will invite you to a pre-assessment telephone appointment that is offered by our highly specialist clinical psychology team.
  • The appointment will discuss parental concerns, gather information around risk, offer advice in response to concerns raised by parents (reasons for referral, understanding autism, information about the assessment pathway, and possible outcomes such as autism diagnosis).
  • Additional advice offered including:
    • SEND Local Offer and Family Hub support,
    • Parent/carer forums,
  • Advice and resources are provided including: 
    • Sleep advice
    • Parenting courses to assist with behaviour challenges
  • We will also signpost to appropriate support, making onwards referrals to other services where needed.

How can I prepare for an appointment?

There is no need to prepare anything in particular for the appointment. However some families may find the following helpful:

  • Learn more about autism
  • Get the ball rolling on intervention services
  • Arrange support for the day of the appointment
    • Help prepare your child by talking to them about what to expect.
    • Many parents also find the diagnosis process emotional and overwhelming. Rather than go it alone, consider inviting someone you trust to accompany you, help take notes on what was said and make sure your questions get answered.
  • Gather your child’s information ready for the appointment
    • It can be helpful to have the red book available at the appointment. 
    • We have created a document which will be sent out to you once your appointment is scheduled. This is called the Cheyne Pre-assessment questionnaire.
    • You might find it helpful to complete this ahead of the appointment and bring it with you on the day.
    • There is no need to send us the document, this document is for you.
    • Download the pre-assessment questionnaire

 Booking an appointment

  • You will be contacted by a member of our team when we are ready to book the appointment to check that you can attend the appointment we will be offering.
  • The appointments will be on either a Monday, Tuesday, Wednesday, Thursday or Friday.
  • Appointment may be at our Chelsea site or our Parkview site. Your appointment letter will state which site your appointment will be at.
  • When booking an appointment, you will be asked if you need an interpreter. Please let us know if that would be helpful.
  • Please don’t bring any other children to the appointment as we want you to focus on your child that is having their assessment.
  • We recommend that you bring along someone who can support you during the appointment, this could be a partner, relative or friend.
  • If you need any adaptations to be made for you for the appointment please let us know and we will do our best to help.
  • If you confirm that you will be attending the appointment and then don’t show up without letting us know your child will be discharged from our service and a new referral will be needed.
  • If your child is unwell on the day of the appointment please call us to let us know as far in advance as possible and we can reschedule the appointment.

What to bring to an appointment

We would encourage you to bring:

  • Questions or concerns you have.
  • Toys or books for your child or young person to keep them entertained as they are waiting.
  • Snacks or drinks if you think your child or young person will get hungry.
  • A completed copy of the Cheyne Pre-assessment Questionnaire. This is not required, but you may find this helpful.

The autism assessment appointment. 

Here is a video explaining a little more about the assessment:

Face-to-face appointments are a chance for us to meet your child or young person.  You may be asked to go to just one appointment or you may be asked to attend more than one appointment. Families may be invited to a number of different appointments depending on their child’s needs. In general we try to do assessments and feedback appointments in just one day, however if you have more than one appointment this just means we want to gather more information about your child or young person. 

During the assessment, your child or young person will engage in interaction with the therapist.  This allows for close observation but also provides a comfortable and interactive environment. Through this session, we aim to gain valuable insights into your child or young person’s behaviour and responses. Autism is a broad condition, and each child’s or young person journey is unique.

This appointment may consist of the following:

  • 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.
  • Physical examination
  • Autistic Diagnostic Observation Schedule (ADOS): A structured play and question-based assessment completed with your child or young person.

Who is involved in assessing my child on the school age autism (ASD) assessment pathway?

The assessment is usually completed by a multi-disciplinary team that may be made up of the following professionals:

  • Community paediatrician: A paediatrician with a special interest in child development
  • Clinical Psychologists: A highly specialist clinical psychologist who is highly experienced in the assessment of social communication difficulties
  • Speech and language therapist: A specialist speech and language therapist experienced in the assessment of social communication difficulties

Are any other agencies involved?

  • We may contact your child's school 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.

Assessment outcome

Once your child or young person has been assessed, we will arrange an appointment to discuss the findings of your child or young person's assessment. Sometimes this is on the same day as the assessment and at other times it is on a different day. At this appointment we will also talk about your child's strengths, differences and needs. If you think it will be helpful, you can bring a family member or friend.

If your child or young person does not meet the criteria for an autism diagnosis, we will explain why and will talk through with you about their individual strengths and needs.

If your child or young person does meet the criteria for an autism diagnosis, we can tell you more about their diagnosis and the support that is available.

Regardless of the outcome, we will give you information and resources to help your child or young person's needs. These will help you find the right ongoing support for your child or young person. 

Whatever the outcome of the assessment process, it's important to celebrate your child or young person for who they are. This is only one part of the journey for your child or young person. 

Make sure to celebrate their strengths and what makes them unique. 

Whom should I contact if I need further information?

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


Cheyne School-age ASD co-ordinator

  • Telephone: 020 3315 5671
  • Email: chelwest.ccdsschoolageasd@nhs.net

 

What will happen after the assessment?

 

 

  • A report summarising the assessment findings will be given to you on the day. 
  • A more detailed report will be sent out and shared with you, the referrer and your GP. We will agree with you as to whether we will send the report to your child’s school.
  • We will refer your child to other services if required.
  • If your child receives a diagnosis of autism you will be informed about post-diagnosis support groups and you will be offered a post diagnosis appointment.
  • Please see our autism page for more information Autism — Chelsea and Westminster Hospital NHS Foundation Trust