What is neurodiversity?
People experience and interact with the world in different ways and there is no one right way of thinking, learning and behaving. Neurodiversity is a word used to describe the different thinking, learning and processing styles that may affect how people communicate with the world around them. It reflects normal variations in brain function and behaviour.
Neurodiversity can affect someone’s behaviour, memory, or ability to learn but this is not always the case. It is an umbrella term – a word that sums up lots of different things. Neurodiversity includes autism, attention deficit hyperactivity disorder (ADHD), dyslexia, dyspraxia, dyscalculia, and Tourette’s.
If you have questions or concerns about your child or young person’s thinking, learning or behaviour and would like to understand how you can support them, it can be helpful to speak with a professional who knows them well and has regular contact with them.
For school age children and young people, concerns should usually be discussed first with their teacher or Special Educational Needs Co-ordinator (SENCo). They can help identify any support that may be available in school, and there are often strategies that families and schools can put in place without the need for a specialist assessment.
You may also wish to speak to your school nurse, health visitor (for younger children) or GP. It can be helpful to increase your own understanding by reading trusted information, talking to professionals, or connecting with other parents and carers who have had similar experiences.
Every local Council will have a ‘Local Offer’, which is available online. The local offer details all the help and services available for young people with additional needs in that area.
Support for neurodivergent children and young people should be coordinated across education, health and care. Every child or young person is different, and the support they and their family need will depend on their individual strengths, needs and circumstances.
Neurodiversity exists across a broad spectrum. While some children and young people may meet the diagnostic criteria for conditions such as autism or ADHD, others may experience similar challenges without meeting the threshold for a formal diagnosis. Many children and young people can benefit from support regardless of whether they have a diagnosis.
If you are wondering whether your child may be neurodivergent, there is a range of information, guidance and support available to help you understand their strengths and needs and navigate the support available.
For some children and families, it may be appropriate to seek further help through an assessment for a possible neurodevelopmental condition. However, a formal diagnosis of autism, ADHD or another neurodevelopmental difference is not required to access many forms of support. Support should be based on a child’s individual needs rather than diagnosis alone.
Not all families choose to seek a diagnosis, and that choice is entirely up to you. Some families find a diagnosis helpful in understanding their child’s strengths and needs and accessing appropriate support, while others prefer to focus on meeting their child’s needs without pursuing a formal diagnosis. Both approaches are valid.
Not every child experiencing differences in areas such as communication, interaction, attention, emotional regulation or behaviour will require a neurodevelopmental assessment. The decision to refer for assessment should be based on the nature, severity and impact of a child’s needs on their everyday life.
Every local authority has a ‘Local Offer’, which is available online. The Local Offer provides information about services, support, groups and resources available for children and young people with additional needs and disabilities in the local area. It can be a useful starting point for understanding what support is available and how to access it.
Whatever you decide, support is available to help you and your child, and you do not need to face this journey alone.
If your child is waiting for an assessment, you do not need to wait to access support. Schools, early years settings and community organisations can provide support based on your child’s individual needs. You can also find practical advice and local support through the resources below:
Norfolk local support – Guide to Neurodevelopmental support – Just One Norfolk
Suffolk local support – Autism, ADHD and Neurodevelopment – Suffolk SEND Local Offer
NHS Norfolk and Suffolk, with colleagues from the wider system, have developed further advice and signposting. The following quick guides are created for any family who feels their child may be showing signs of neurodevelopmental differences. They can signpost you to resources and services to support you on your journey.
The Just One Norfolk Neurodiversity Digital Library can also help you access trusted advice and practical support. It includes information about neurodevelopmental differences, strategies to support your child, and links to local services. The resource is relevant for families in both Norfolk and Suffolk.
Please see below information about requests for neurodiverse assessments for children and young people
NHS Commissioned pathways Norfolk and Waveney – Requests for Assessment from Schools
Within Norfolk and Waveney, schools can now directly request assessment from NHS Neurodevelopmental services for children and young people. NHS services who accept requests directly from schools are:
- Norfolk Community Health and Care (NCHC) for Central and West Norfolk
- James Paget University Hospital (JPUH) for Great Yarmouth and Waveney
Families and education colleagues are advised to look at the service websites to see what supporting information will be required to send to services as part of the request. Detailed information from parents and carers, plus information from other professionals (such as teacher/SENCo) relating to neurodevelopmental difficulties is usually required to be submitted alongside the request form.
Requests for assessment from GPs
Not all children and young people attend a school setting, so GPs can also still refer to NHS assessment services as well make referrals for those wishing to take up their Right to Choose.
NHS Commissioned pathways Suffolk
The Suffolk Neurodevelopmental Pathway supports children and young people aged 5 up to the age of 18 who live in Suffolk (excluding Waveney) and where there are concerns about autism and/or ADHD. Information about the services and support available through the pathway for children, young people and their families is on the Suffolk Local Offer website.
What does the pathway include?
At the current time, this pathway is only for autism and ADHD. If you are concerned that your child may have a different neurodevelopmental condition, such as OCD or Tourette’s, your GP is the best first point of contact for advice and guidance on next steps.
Is there a separate pathway for children under 5 years of age?
For children under the age of 5, there is a separate pre-school pathway. If your child is under 5, please speak to your GP or Health Visitor, who can advise whether this pathway may be appropriate. Information on how to contact your local health visiting team can be found by contacting children’s health and children’s centre services – Suffolk County Council.
How does a family typically access the Suffolk Neurodevelopmental Pathway?
To access the Suffolk Neurodevelopmental Pathway, families need to work with a professional who knows your child and can support the referral. This is called a Lead Professional and is most often someone from your child’s school, such as a teacher or SENCO.
Referrals can also be made by other professionals, including a health visitor, school nurse, GP, social worker or mental health practitioner. If the lead professional is not from your child’s school, we recommend that the referral is completed together with the school, so your child’s learning and education needs are fully included.
Can families self-refer?
At the moment, families cannot self-refer, a professional must submit the referral. To help parents and carers understand how the Suffolk ND Pathway works, the Suffolk ND Pathway Parent Carer Guide was produced by the ICB, working in partnership with West Suffolk NHS Foundation Trust, Norfolk and Suffolk NHS Foundation Trust, and the Suffolk Parent Carer Forum. You can access the guide on the Suffolk Local Offer website
Further support
Suffolk offers a range of newly commissioned neurodevelopmental (ND) support services to help parents, carers, children and young people before, during and after diagnosis. Local organisations, including KIDS, Home-Start, Suffolk Mind, 4YP, Suffolk Family Carers, Family Action and The Maze, provide emotional support, practical guidance and opportunities to connect with other families who may have similar experiences. Families can also access support from SENDIASS (Special Educational Needs and Disabilities Information, Advice and Support Service), which provides free and impartial information, advice and guidance on SEN Support, assessment pathways, school-based support and other SEND-related processes.
For further information please visit the Suffolk SENDIASS website.
Is there a list of quality assured approved providers available?
Below is a list of quality assured approved suppliers who have successfully evidenced that they meet the Norfolk and Suffolk ICB accreditation, which includes NICE compliant assessment models involving teams and face-to-face assessments for children aged 6-18 years.
The below providers all offer autism assessment, ADHD assessment and combined assessments.
Provider and prescribing arrangements
Community Assessment Therapy Services
Provider can offer initiation of ADHD medication following assessment.
Evolve Psychology
If ADHD Prescribing is recommended following diagnosis, patient would need onward referral.
The provider can make this referral directly, but it will incur further waits for the child or young person
Help for Psychology
Provider can offer initiation of ADHD medication following assessment.
National Neurodiversity Assessments
If ADHD Prescribing is recommended following diagnosis, patient would need onward referral.
The provider can make this referral directly, but it will incur further waits for the child or young person
Seven Care Services
If ADHD Prescribing is recommended following diagnosis, patient would need onward referral.
The provider can make this referral directly, but it will incur further waits for the child or young person
The Owl Centre
Provider can offer initiation of ADHD medication following assessment.
Paloma Health
Provider offers ADHD, autism (ASD) and combined ADHD/autism assessments for children and young people.
Why is NICE compliance important?
NICE (National Institute for Health and Care Excellence) sets out the national standards for ADHD and autism assessments. Using providers that follow NICE-compliant assessment processes helps ensure assessments are thorough, evidence-based and carried out in line with recognised clinical standards. Parents and carers should check that any provider they choose uses NICE-compliant assessment models and provides a comprehensive assessment report.
Choosing the correct pathway/ waiting on NHS and RTC pathways simultaneously
In some circumstances, children and young people (CYP) may remain on a local NHS waiting list whilst also considering a referral through an NHS Right to Choose provider.
Can individuals be on more than one waiting list?
They can only be on one waiting list at a time.
If you are considering a referral through an NHS Right to Choose provider while your child is already waiting for an assessment, it is important to discuss your options with the professional who made the referral, such as your GP or another healthcare professional involved in your child’s care.
Because local pathways and provider arrangements can differ, families should speak to their referrer before making any changes to an existing referral. Your referrer can explain the options available, any implications for current referrals, and whether a referral to an alternative provider would be clinically appropriate.
What rights do individuals have?
Under NHS Right to Choose arrangements, individuals (children and young people) and families have the legal right to choose an alternative, qualified provider for a first outpatient appointment, provided the eligibility criteria is met and the provider holds an appropriate qualifying NHS standard contract for the required service.
When does a Right to Choose assessment begin?
A Right to Choose assessment pathway will usually begin once a referral has been accepted by the chosen provider. Before this, families may be asked to complete questionnaires, provide developmental history information, or take part in screening or triage. These steps help the provider determine how the assessment should be managed but are not, in themselves, a full clinical assessment.
Once the referral has been accepted, the chosen provider becomes responsible for managing the child’s or young person’s assessment and any related clinical care associated with that referral.
Where a child or young person proceeds with a Right to Choose provider, they will not continue to progress through the local NHS assessment pathway for the same referral. Families are encouraged to discuss any questions about referral pathways, waiting times or eligibility with their GP before choosing a provider.
Access to medication for ADHD after a RtC assessment
If your child receives an ADHD diagnosis through a Right to Choose provider and medication is considered clinically appropriate, it is important to understand that not all providers are commissioned or able to prescribe and manage ADHD medication.
Some providers are able to assess, diagnose, initiate and monitor medication where appropriate. Other providers may provide assessment and diagnosis only and may not offer prescribing services.
Before choosing a provider, families should check whether the provider offers ADHD medication assessment, prescribing and ongoing medication monitoring, where this may be required. The provider should be able to explain the services they offer and any arrangements for ongoing care.
Advice for Families considering Independent or Private Neurodevelopmental Assessments
Families may wish to consider either an NHS Right to Choose (RtC) provider or an independent/private provider for a neurodevelopmental assessment.
It is important to understand the difference:
- Right to Choose providers are NHS-funded providers that hold an NHS contract and can accept eligible NHS referrals. There is no cost to the patient for an assessment through a Right to Choose pathway.
- Independent or private providers are not funded by the NHS for the assessment. Families choosing this route are responsible for meeting the costs of the assessment and any associated appointments, which can vary between providers.
Before proceeding with an independent or private assessment, families should check:
- whether the provider follows relevant NICE guidance for assessment and diagnosis
- whether the provider provides a comprehensive assessment report
- what support is available following diagnosis, including any medication assessment, prescribing arrangements and follow-up care where relevant
- whether any ongoing care would require involvement from NHS services or the child’s GP
When considering any provider, families should ensure they understand the assessment process, costs, and what services are included before making a decision. Families considering a private assessment should be aware that a private diagnosis does not automatically guarantee access to NHS prescribing, ongoing treatment or shared care arrangements.
NHS Norfolk and Suffolk ICB has created guidance for families who are considering independent assessments.* This includes important information to think about before you proceed, like shared care arrangements if medication is recommended.
Access to medication after non-NHS funded Independent/ Private assessments
While medication is not the first option for treating ADHD, it is important to be aware that when it is proposed, not all private providers can prescribe or manage medication. If patients wished for medication to be funded by the NHS, they would need to commence a new NHS funded assessment.
FAQs
The information above explains the key principles and support available. The frequently asked questions below provide further information on topics parents and carers commonly ask about.
Does my child need a diagnosis to get support?
No. A formal diagnosis of autism, ADHD or another neurodevelopmental difference is not required for children and young people to receive support. Schools, early years settings and other services can often put support in place based on a child or young person’s individual needs.
I think my child may be neurodivergent. What should I do first?
If you have concerns about your child’s development, learning, behaviour or communication, speak to someone who knows your child well, such as their teacher, Special Educational Needs Co-ordinator (SENCo), health visitor, school nurse or GP. They can discuss your concerns and help identify what support may be available.
What support is available while we are waiting for an assessment?
You do not need to wait for an assessment or diagnosis before seeking support. Schools and early years settings can provide support based on need, and many community organisations, charities and parent support groups can also offer advice and practical help.
Will being on a waiting list affect the support my child receives at school?
No. Schools should continue to assess and support your child based on their needs, regardless of whether they are waiting for an assessment or have received a diagnosis.
What is Right to Choose?
Right to Choose allows families, in some circumstances, to choose an alternative NHS-funded provider for a first outpatient appointment, including some neurodevelopmental assessment services. Your GP can discuss whether this is appropriate for your child and whether the chosen provider meets the eligibility criteria.
What happens to my child’s local NHS referral if we choose a Right to Choose provider?
If you are considering a Right to Choose provider, your GP can explain the referral options available and what choosing an alternative provider may mean for your child’s existing local NHS referral.
Arrangements may depend on the stage of the referral and the services involved, so families should discuss this with their GP before making a decision. This will help you understand the options available and what will happen to any existing referral.
If we choose a private assessment, will the NHS automatically accept the diagnosis?
If you wish to receive NHS funded treatment following a privately funded diagnosis, the diagnosis will still need to be reassessed and confirmed as NICE compliant by the NHS funded service at the point at which you are seen by them.
A privately funded diagnosis cannot be used to advance your position on this waiting list, nor can it be used to bypass the assessment stage and progress straight to treatment.
How long will we have to wait for an assessment?
Waiting times vary between services and providers and can change over time. Families are encouraged to contact the assessment provider directly or speak to their GP for the most up-to-date information.
Where can I find further information and support?
Additional information and local support can be accessed through your local authority’s Local Offer, school or educational setting, NHS websites, and local parent and carer support organisations.
Does every child diagnosed with ADHD need medication?
No. Medication is not appropriate or necessary for every child or young person with ADHD. Support may include changes at home or school, behavioural strategies, parenting support and other interventions. Medication may be considered where ADHD symptoms are having a significant impact on day-to-day life.
Who decides whether ADHD medication is appropriate?
A qualified healthcare professional will discuss the possible benefits and risks of medication with you and your child or young person. The decision to start medication is made jointly with families, taking into account the child or young person’s needs, preferences and overall health.
Will my child be able to access ADHD medication following an assessment?
Medication is not always recommended and is not the first-line treatment for ADHD. If medication is considered appropriate, arrangements for prescribing will depend on the provider that completed the assessment. Families should check this before choosing a provider.
Can ADHD medication be started immediately after an assessment?
Not always. Following an assessment, further appointments may be needed before medication is considered. This may include gathering additional information, carrying out physical health checks and discussing treatment options with the family.
What health checks are needed before ADHD medication can be prescribed?
Before medication is started, clinicians will usually carry out checks such as measuring height, weight, blood pressure and pulse, and asking about medical history and family history. Additional investigations may sometimes be required.
Will my child need regular reviews if they are taking ADHD medication?
Yes. Children and young people taking ADHD medication require regular reviews to ensure the medication remains safe and effective. These reviews may include monitoring growth, blood pressure, pulse, side effects and how well the medication is helping.
If my child is assessed through a Right to Choose provider, can they receive ADHD medication?
This depends on the provider. Some Right to Choose providers can initiate and prescribe ADHD medication, while others cannot. Families are encouraged to check prescribing arrangements before choosing a provider.
What happens if our chosen Right to Choose provider cannot prescribe ADHD medication?
If medication is recommended but the provider cannot prescribe or manage medication, your child may need to be referred to a local NHS service for medication assessment and management. This may involve an additional waiting period.
If we pay for a private assessment, will the NHS take over prescribing ADHD medication?
Not necessarily. NHS services are unable to guarantee that prescribing will be taken over following an independent or private assessment. Families should carefully consider prescribing arrangements before proceeding with a private assessment and review the local guidance available.
What is shared care?
Shared care is an agreement between specialist services and a GP which allows ongoing prescribing and monitoring of specialist medication to take place in primary care once a child or young person is stable on treatment. Shared care arrangements are subject to local NHS policies and clinical agreement between the specialist and GP.
Can my GP prescribe ADHD medication straight away?
No, GPs do not start ADHD medication themselves. Medication is initiated by an appropriately qualified specialist clinician following a comprehensive assessment and physical health checks.
What should I do if I have concerns about my child’s ADHD medication?
If you have concerns about your child’s medication, side effects, or if you feel the medication is not helping, you should contact your GP and the clinician or service responsible for your child’s ADHD care for advice.
What happens if clinicians think my child may have another neurodevelopmental condition during their assessment?
Sometimes, during a neurodevelopmental assessment, clinicians identify evidence that a child or young person may also have another neurodevelopmental condition. While a combined assessment may be clinically appropriate in some circumstances, Right to Choose providers can only undertake assessments that are within the scope of the referral they have accepted and their NHS contract.
Can a Right to Choose provider add an assessment for another neurodevelopmental condition?
No. Under current NHS Right to Choose arrangements, there is no explicit process that allows a provider to extend a single-condition referral to include assessment for another neurodevelopmental condition once the referral has been accepted. Any additional assessment must be consistent with the provider’s NHS contract and the agreed referral pathway.
What happens if another neurodevelopmental condition is suspected during my child’s assessment?
If the assessing clinician identifies evidence that your child or young person may also have another neurodevelopmental condition, they should discuss this with the young person and or you, clearly document their findings and inform the referrer. If a further assessment is considered appropriate, this would usually require a referral through the locally agreed pathway, which will ordinarily be made by your GP.
Why can’t the provider complete both assessments at the same time?
Although assessing co-occurring neurodevelopmental conditions together may reduce duplication for families, providers delivering NHS Right to Choose services must work within the scope of their commissioned contract and the referral they have accepted. They cannot routinely extend an assessment beyond the agreed referral pathway.