Neurodevelopmental pathway: information for parents and carers

At the first appointment it is important for you to bring your child. This means we can meet them, talk to them, complete some activities or play with them – this all forms part of our assessment. 

However there can be some appointments where you might just want to focus on talking with the doctor. For these, it might be better if your child remains at school/nursery or home. We will let you know in advance if it will be beneficial for your child to be there. 

Yes! The appointments can be long and it might be nice for your child to have familiar things with them to keep them entertained. This will not affect the assessment process as it is important for us to understand what interests your child and how they play. 

During the appointment, we may use specific toys and items to assess your child’s development and behaviour. We will let you and your child know if and when these will be needed. 

We need your consent prior to starting your child’s assessment. This shows that you understand why we are assessing your child and what will happen during and after the assessment.

We also seek consent for us to obtain and share information with other agencies that support you and your child – such as your child’s school.  This helps us understand your child’s strengths and difficulties in different contexts and environments.

If you are unsure about giving consent, please contact us to discuss this further as this may impact on whether the assessment can go ahead.

There are several reasons why a child’s referral may be rejected by our neurodevelopment diagnosis service.

Often, this happens because the screening forms have not been sent with the referral. Please ensure these are all completed in full and sent with the referral.

When reviewing referrals and questionnaires we may also determine that the child does not meet the criteria for ADHD/ASD assessment. ADHD and autism can cause behavioural and emotional difficulties but so too can other mental health problems like anxiety, poor anger control or learning difficulties. 

Each referral is reviewed and discussed with a multi-disciplinary team. Following this discussion, if we feel there is sufficient evidence that your child is unlikely to suffer from ADHD/ASD we will advise you of alternative services rather than leaving you to wait for an assessment.

We will give you reasons and provide information to help you find appropriate ongoing support and alternatives to ADHD/ASD assessment. 

Remember that a child or young person does not need a medical diagnosis in order to get support in education. Please see the ‘further support’ section for details of local support for children with neurodevelopmental needs. 

We are sorry that your child is struggling at the moment and we wish we could provide an assessment quicker.

However, there are currently long waits for neurodevelopmental assessment due to the number of children being referred for this services. We are working very hard to tackle this long wait and shorten waiting lists.

Parents/guardians who have concerns for their child’s neurodevelopment may wish to access a range of local resources in the first instance. You can see details of these under the ‘further support’ tab.

You can also discuss your concerns with your child’s Special Educational Needs and Disabilities Coordinator (SENDCO) at your child’s school or educational setting. You should discuss any provision currently in place and consider any changes required.

Children who have certain disabilities or long-term conditions who are being assessed for a neurodevelopmental condition (ADHD or ASD) will be offered support via the neurodisability pathway.

This pathway is for children who will need regular review and may need support from a paediatrician. Children who may be seen on this pathway include children with cerebral palsy, Down syndrome, genetic disorders, global developmental delay and children who are being investigated who are presenting with developmental delay or difficulties.

Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental condition. There are three subtypes: ‘inattentive’, ‘hyperactive’ and ‘combined’.

The symptoms of ADHD include:

• Inconsistent attention (struggling to focus on something expected of the child or young person but may hyper-focus on something else).
• Hyperactivity (fidgety and finding it difficult to stay still when needing to)
• Impulsiveness (frequently suddenly doing or saying things without considering the consequences)

People with ADHD may also find it difficult to organise, plan, start tasks, finish tasks, and self-regulate.

As part of development, children typically will take time to learn how to listen, concentrate and follow expectations in everyday activities such as listening to a story, sitting down to dinner, playing with their friends. As a child grows, they may find it difficult to develop these skills at the same rate as their peers. This may suggest that further assessment in these areas could be considered. ADHD is often diagnosed in childhood but sometimes in adolescence or later. 

For an ADHD diagnosis, characteristics must be present in two or more settings (for example, home and school) and must not be better explained by another diagnosis. As we are all different, some children may present with inconsistent attention, hyperactivity or impulsivity but be below the threshold for a diagnosis.

ADHD is diagnosed through assessment and review, not through blood tests or scans.

Once a referral has been accepted, an assessment process takes places. There are several stages to the assessment process:

Information gathering
The ADHD team gathers information from parents, carers, schools and any other key professionals using standardised questionnaires. Information in the questionnaires is then assessed and the questionnaires scored to determine if they reach the clinical threshold for ADHD. Parents can also provide any additional useful information such as school reports as supporting evidence.

The questionnaires can help identify specific symptoms of ADHD that may not otherwise emerge and reveal how well a person functions at school, home, or work.

As part of the ADHD assessment process, your child or young person will need a physical examination. We will listen to your child or young person’s heart. We will also measure:

• height
• weight
• pulse
• blood pressure

Your child or young person may need to attend a Qb test. You may receive an appointment to bring your child for a Qb test. 

The Qb test is a tool used to help clinicians assess ADHD (attention deficit hyperactivity disorder) in children, young people and adults. The test monitors how much a person moves. It focuses on attention, impulsivity and activity levels. There are no right or wrong answers in this test. It is used to track how your child or young person responds. Clinicians cannot diagnose ADHD only using the Qb test. It’s used alongside other tools like observations or assessments from professionals. You will not be able to get any immediate results as to whether or not your child or young person has ADHD.

What will happen during the appointment?

Our clinician will greet you and bring you and your child or young person into the clinic room. We will check that all your personal details are correct. We will explain the Qb test and the guidelines for the test. 

You will be asked to sit outside the clinic room during the test. This is so your child or young person can focus on completing the test with minimal distractions. We will ask you to fill out some questionnaires whilst you are waiting.

Before the test, your child or young person will watch a instruction video on how to complete the test. They will also be given some practice tests to help them feel more comfortable and confident taking the test. Your child or young person will be able to ask as many questions as they need before the test starts.

The clinician will be in the room with your child or young person. If you child or young person has any issues or problems with the test, the clinician can help them.

Taking the Qb Test

Qb Test Instruction video https://youtu.be/KU_Tl0ycoDk

Depending on your child or young person’s age, the Qb Test will last between 15 or 20 minutes. The test will automatically end after the required time of 15 or 20 minutes. 

The Qb test uses:

• Soft headband with a reflective ball on
• Responder button
• Laptop
• Infrared tracking camera

Cameras and filming

The test uses an infrared tracking camera. This camera films the movement of the reflective ball attached to the headband. It will only record how much your child or young person moves.

This is why it’s important your child or young person doesn’t wear anything sparkly, shiny or reflective. 

For the test itself, your child or young person will be sitting down in front of a laptop screen. They will wear the soft flexible headband with a reflective ball attached to it. This will measure your child or young person’s movement during the test.

They will also be given a responder button to use. They will click the button when they see certain shapes on the screen. 

The test will automatically end after 15 or 20 minutes, depending on your child or young person’s age. 

There is no wrong way to take this test. Your child or young person cannot fail it. It is not a pass or fail test. The Qb Test is used to gather information about your child or young person.

Diagnostic and management plan
Following the Qb test screening, an appointment will be made for a consultation with Community Consultant Paediatricians or ADHD Advanced Clinical Practitioner and a Non-Medical Prescriber. The appointment usually lasts about an hour and 15 minutes and collates all of the information gathered through the questionnaires and previous assessments. Time is spent carefully going through the child’s history with them and their parents and/or carers.

Information gathered is assessed and an appropriate management plan is discussed. 

If your child is diagnosed with ADHD, treatment options will also be discussed.

At this appointment, parents and/or carers have the chance to ask any questions they might have and you will also be signposted to sources of advice, guidance and support including Parent Information Sessions. Lots of helpful resources are available on this webpage including leaflets about ADHD and behaviour management.

Please note that not all children who are assessed will receive a diagnosis of ADHD.  However, a child or young person does not need a medical diagnosis in order to get support in education. Please see the ‘further support’ section for details of local support for children with neurodevelopmental needs. 

Treatment interventions
With parental consent (and agreement from the young patient), the service can provide a range of treatment interventions including stimulant and non-stimulant medications. Working with parents and the child’s GP, the medications are regularly monitored and reviewed.  While medications are not a cure for ADHD, they have been proven to help people with the condition, improving their ability to concentrate, control their impulses and feel calmer.

Medication isn’t always an option for everyone and, understandably, some people prefer to try other options in the first instance. What would be most suited to the young person’s needs will be discussed with the ADHD Clinical Nurse or Consultant Community Paediatricians, however non-medication interventions can include Cognitive Behavioural Therapy (CBT), psychoeducation, parental training and education programmes and social skills training. You will also find lots of guidance and advice on coping strategies, improving sleep and managing emotions on this web page.

These resources can also support for families while they wait for an appointment.

Before receiving a diagnosis of ADHD, it is important that your child has a detailed assessment completed by a specialist paediatrician or ADHD Advanced Clinical Specialist Practitioner.

They will seek detailed information about your child’s ADHD symptoms, behaviours, emotional difficulties and school progress. Parents/guardians and teachers will be asked to complete medical questionnaires (also called rating scales).

The doctor can then make a diagnosis of ADHD if your child meets the diagnostic criteria set out in medical manuals: The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) or International Classification of Diseases 11th Revision (ICD 11).

To meet the criteria for a diagnosis of ADHD, your child must have had ADHD features before the age of 12 years, for at least 6 months, present in more than one setting (usually home and school), and with ongoing significant impairment.

There are no specific blood tests or brain scans recommended to prove the diagnosis of ADHD. Your child’s doctor may carry out certain tests, as required, depending on your child’s clinical condition or difficulties.

Parent training/education programmes may be offered if your child has been diagnosed with ADHD. They are structured programmes which can be group-based or individual-based. They aim to equip parents and carers with relationship-enhancing strategies to support their child.

Some examples of parent training/education programmes that may be offered include Tripe P (Positive Parenting Programme) and the Webster-Stratton Programme.

Autism spectrum disorder (ASD), often known as just autism, is a lifelong developmental condition that affects how a person communicates with and relates to other people and how they experience the world around them.

An autistic person may have difficulties with  verbal and nonverbal social communication skills that affect their daily life. They may struggle to interact with other people, cope in social situations and form or maintain relationships. Autism is also associated with restricted and repetitive behaviours, such as finding it hard to cope with changes, repetitive movements, fixated interests and sensory processing differences.

These features must be present in the early developmental period but may not be recognised by others until later on in a person’s life. These may become apparent as the social demands increase, or conversely may be masked by learned strategies as a person gets older.

Having a diagnosis of autism does not mean that there is something ‘wrong’ with a person, although we acknowledge that differences in social communication and interaction can lead to challenges in life, such as finding it hard to cope at school. We also recognise that autistic people have many strengths and with the right understanding and support around them can lead a fulfilled and meaningful life.

How to best manage and live with autism is different for each individual. A diagnosis should not be required for interventions that support your child, but it will help your child and others understand the way they think and perceive the world.

The autism spectrum disorder (ASD) pathway includes assessment, diagnosis, support and intervention for children with social communication difficulties.

When a child or young person is referred to us, we hope to gain an understanding of their strengths and difficulties across three areas: social interaction, social communication and social imagination.

Following your child’s assessment, we will decide if a diagnosis of ASD will be useful in explaining your child’s pattern of difficulties.

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

• Speech and language therapy (SLT) assessment: an assessment of your child’s speech and language skills, carried out through a variety of activities and tasks accompanied by a speech and language therapist.
• Structured diagnostic interview: a structured interview with parents which asks specific questions about your child’s social communication skills.
• Developmental history: a structured interview with parents asking questions about their birth, development and medical history, focussing on communication and social interaction.
• School/nursery questionnaires: to gain additional information about your child within a 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: we may carry out an observation of your child within the classroom setting to observe their social communication with peers. We also meet with their class teacher or a familiar adult to complete a questionnaire to gain an in-depth understanding of their social communication within the school context.
• Cognitive assessment: a standardised assessment of your child’s thinking and learning skills.

The Autism Spectrum Disorder diagnostic assessment is dependent on all the gathered information above to see whether your child meets the the Diagnostic and Statistical Manual of Mental Disorders (DSM)-Fifth Edition criteria. A report summarising the findings will be sent to you and shared with your GP. 

We will refer your child to other services if required.

If your child receives a diagnosis of ASD, you will be invited to our post-diagnosis support groups – we run these in Southend and surrounding areas with a range of partners and community groups.

Please note that not all children who are assessed will receive a diagnosis of ASD. However, a child or young person does not need a medical diagnosis in order to get support in education. Please see the ‘further support’ section for details of local support for children with neurodevelopmental needs. 

Resources for parents and carers

There are a wide range of local, national and international resources available for parents and carers who are supporting a child or young person with neurodevelopmental needs. You can find these on our resources for parents and carers page. 

Your child does not need a diagnosis in order to get help in school. Schools must comply with the Special Educational Needs and Disability (SEND) code of practice (January 2015) and follow the guidance and processes described.

If a child or young person has a significantly greater difficulty in learning than the majority of other people their age, they are considered to have special educational needs (SEN).

A full guide to special educational needs and disability for parents/guardians is available on the government website.

Teachers and school staff should do all they can to give your child the support they need. This could be achieved by getting advice and support from specialists (such as an educational psychologist, a speech and language therapist or the specialist teaching and advisory service).

SEN support can take many forms depending on the needs of your child. These may include:

• offering support with personal care difficulties such as eating, getting around safely, using the toilet or dressing
• a bespoke learning programme for your child
• extra help from a teacher or teaching assistant
• having extra materials or equipment, or adapting them for your child
• working with your child in a small group
• helping your child to take part in class activities and group work
• making sure your child has understood things by encouraging them to ask questions and to try something they may find difficult
• helping other children to work with your child or play with them at break time

According to national and local guidance for schools, permanent exclusion should always be a last resort.
Parents and carers should continue to discuss their child’s situation and needs with their schools SENDCO and head teacher to review current support arrangements and agree a way forward.

SENDIASS Southend is the Special Educational Needs and Disabilities Information, Advice and Support Service for families in Southend-on-Sea.
This short video animation, aimed at children and young people with special education needs and their parents, gives an overview of the support on offer from SENDIASS. It also talks about how to contact your local SENDIASS team.

Essex SEND IASS provides free, confidential and impartial information, advice and support about Special Educational Needs and Disability (SEND) for children and young people (0-25), parents and carers.