Following Consultation with the Neurodevelopmental (ND) Spoke Service, your child’s referral has been accepted by the Children and Young People’s (CYPS).

Neurodevelopmental (ND) Service for an assessment of either Autism Spectrum Disorder (ASD) Attention Deficit Hyperactivity Disorder (ADHD) or both. This letter is to provide you with some details about the ND assessment pathway and what you might expect to take place as part of your child’s assessment.

Terminology

Autism Spectrum Disorder

Different terminology is used to describe autistic individuals. Throughout the assessment process, we will use Autism Spectrum Disorder (ASD) as this is the medical terminology used in the diagnostic manuals. However, we recognise that individuals may have a preference for which terminology to use outside this assessment setting. We would recommend you refer to the National Autistic Society (NAS) website for further information. 

Attention Deficit Hyperactivity Disorder

Throughout the assessment process, we will use Attention Deficit Hyperactivity Disorder (ADHD) as this is the medical terminology used in the diagnostic manuals. We would recommend you refer to the Young Minds website for further information ADHD and mental health - Young Minds.

Consent

Before any assessment takes place, it is essential that we have consent from your child if they are 12 years or older. We assume a child of this age and upwards (unless there is information to suggest otherwise) can be involved in the decision-making about their assessment. We will ask for consent at each stage of the assessment. Regardless of age, it is helpful to talk through with your child what the assessment is for and begin to have conversations about what ASD and/or ADHD are.

If you are waiting for an ASD assessment, please make sure that you and your child review the information pack on our website (under Autism; Resources) called “Explaining ASD to your Child”. 

Assessment process

Our assessments typically take place over two sessions, followed by a feedback appointment where you will receive the results of the assessment:

Developmental History

When the young person reaches the top of our waiting list, parents will be invited to meet with a member of the ND Service who will gather a detailed developmental history for the young person. This meeting may be in person, virtual, or over the phone. The assessment usually involves discussion of the screening documents and the Pre-Assessment Developmental History (PADH) form already submitted. It will also potentially cover some new questions about pregnancy/birth, early development, education, as well as social communication, social interaction, and repetitive behaviours and/or attention, activity, and behaviour. If your child is in education, we will need to speak to their school to gather information about their presentation in a school setting. In some instances, we will also need to carry out a school observation in order to get further information about your child’s presenting needs within this setting.

Final Assessment

The assessments for ASD involve meeting with up to 3 members of the ND Service team for an interactive session (usually face-to-face in one of our clinics) using the Autism Diagnostic Observation Schedule (ADOS) assessment tool. The team will do some activities (e.g. games, puzzles, play) with the young person and will chat with them about a range of topics. This is usually done 1:1 while the parent waits in the waiting room but can be adapted if a young person is anxious about separating. Usually, this final assessment appointment is offered 2-3 weeks after the developmental appointment, but this can vary. For example, if further information is needed (e.g., additional information from school) then the final assessment appointment may be postponed until after this additional information has been collected.

The assessments for ADHD involve meeting with a team member for an assessment, in which the member of staff will observe potential ADHD behaviours as well as speak to the young person directly about their activity, attention, and behaviour.

For joint ASD and ADHD assessments, these above appointments are often combined into one session.

It is important to be aware that at each stage of the assessment, the team will make a decision regarding whether the young person’s presentation is suggestive of ASD, ADHD, or both. If it is decided at any stage that the young person’s difficulties could be better explained by other factors, the assessment will not continue and the young person may be offered alternative support and/or will be discharged from the ND Service.

*Please call us on: 0800 222 5856 if you are not able to attend an assessment appointment that has been offered to you. Unless there are exceptional circumstances, if an assessment appointment is not attended, and you have not cancelled or rescheduled within 24 hours of the appointment, your child will be discharged from the ND Service.

Feedback appointment 

Following assessment, a multi-disciplinary team discussion will take place and a decision will be made as to whether the young person meets the DSM-5 diagnostic criteria for a diagnosis. You will then be offered a feedback appointment to discuss the results of the assessment. Usually, this feedback appointment is offered 2-3 weeks after the final assessment appointment, but this can vary. For example, if further information is needed before a decision can be made (e.g., a school observation) then the feedback appointment won’t happen until after this additional information has been collected. After the feedback appointment, the clinicians will prepare an assessment report which will be sent to you and your child’s GP; we also strongly advise you to share a copy of this with your child’s school (if they are in education).

Next steps and what happens after the assessment

Our ND Service works alongside alliance organisations as part of the Mindworks team to offer support and advice following the completion of our assessments. We will therefore give you details of and signpost you to relevant support based on the outcome of our assessment. Please see the website for more information. Your child will then be discharged from the SABP part of the ND Service.

Waiting times

Currently, the waiting times for assessment are very long and children are waiting between 2-3 years for the first assessment appointment (from the point of the referral being accepted by the CYPS ND Service). We hope that in the meantime, support can be put in place at home and school to address the needs the young person is presenting with. Please see our website for advice on support strategies that may be beneficial:https://www.mindworks-surrey.org/advice-information-and-resources/neurodevelopmental-needs

We would also recommend that you reach out to the below services for support where needed.

If you have concerns about difficulties related to neurodevelopmental need or want advice on support available

Mindworks ND Service's out-of-hours phone line also provides advice to parents and carers who are struggling with behaviours or difficulties which could be related to neurodevelopmental needs, such as ASD or ADHD. Skilled and friendly advisers will talk through with families ways of calming down difficult situations, as well as possible coping strategies on 0300 222 5755 (5pm until 11pm, Monday - Sunday, 365 days a year).

If you have concerns about mental health or risk

If your child is receiving mental health support from a CYPS Community Team and you are concerned about their mental health presentation or risk, then we would advise you to contact your local CYPS Community Duty directly (Monday – Friday, 9 am-5 pm):

  • For South-West (Guildford/ Frimley clinic site), please call: 01372 216111
  • For North-West (Chertsey clinic site), please call: 01932 587066
  • For East (Redhill/Leatherhead clinic sites) please call: 0300 222 5850

For out of hours mental health crisis support, you can call the Emotional Wellbeing and Mental Health Crisis Line on 0800 915 4644 (24/7). For medical concerns, you are advised to contact your GP, NHS 111 or 999, depending on the urgency.

Should you have any concerns about your child’s mental health presentation or risk, and they are not receiving any mental health support from a CYPS Community Team, we would advise you to contact the Neurodevelopmental (ND) Service phone number on 0300 222 5856 and ask for the Duty Clinician.