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 is worthwhile talking to any professional who has regular contact with your child, about your concerns to see what help may be available.
For school age children and young people, concerns and observations should be discussed in the first instance with the young person’s teacher or Special Educational Needs Co-ordinator (SENCo) as there are lots of things that you and the school can do to help your young person without further assessment.
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 and support needs will be different for each individual and their families.
For some children and families, it may be necessary to seek further help through an assessment of possible neurodiversity.
Although an assessment for neurodevelopmental differences such as autism or ADHD is helpful for some families, a formal diagnosis of neurodiversity is not required to access additional support.
Further information on supporting neurodevelopmental needs can be found on the Just One Norfolk website. Please note that this information is relevant for families in Norfolk and Suffolk.
If you, your young person’s teacher/SENDCO or GP have decided that an assessment may be required, it does not mean that you need to wait to access support.
It is important to note that confirmation of neurodiversity is not required to access support for your child at school or pre-school so you should talk to the school staff to ask what they can do to help.
There are other services, charities and support groups in the community who will also be happy to help without a formal confirmation that your child or young person is neurodivergent.
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.
Visit the Just One website to browse a neurodiversity (ND) digital library for parents and carers. Please note that this information is relevant for families in 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
SENDIASS (Special Educational Needs and Disabilities Information, Advice and Support Service) is available for parents and carers of children and young people with SEND. It is impartial source of information, advice and support for families and young people navigating SEN Support, assessment pathways, school support and related SEND processes. For further information please visit the Suffolk SENDIASS website.
Is there a list of quality assured approved providers available?
This 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.
The following provider offers ASD assessments only: Paloma Health.
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. It is important that families are supported to understand how these pathways operate in order to facilitate informed decision-making and avoid duplication of NHS-funded assessment pathways.
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 an active assessment start?
For clarity, completion and return of screening questionnaires, developmental history forms, or triage documentation would not ordinarily be considered commencement of an active assessment pathway under NHS Right to Choose arrangements. These stages are generally undertaken as part of the processes undertaken by the NHS provider.
A Right to Choose pathway would usually be considered to have commenced once the referral has been formally accepted by the chosen provider and the individual or their parent/carer has accepted and/or attended their first clinical outpatient appointment for their assessment as part of that pathway. At this stage, the RtC provider becomes the active provider responsible for the assessment and any associated onward clinical management relating to that referral.
Patients who commence assessment with a RtC provider would not remain on, or continue to progress through, the local NHS waiting list assessment pathway.
Families are therefore encouraged to carefully consider their provider choice and discuss any questions regarding referral pathways, waiting times, or eligibility with their referring GP before commencing assessment with a RtC provider.
Access to medication for ADHD after a RtC assessment
Medication is not the first-line option for treating children and young people with ADHD. However, it is important to be aware that not all providers offering services through the Right to Choose can initiate and prescribe medication if it is subsequently deemed clinically appropriate for the patient.
Advice for Families considering Independent or Private Neurodevelopmental Assessments
If you’re considering private or independent assessment for neurodiverse conditions such as ADHD and Autism for your child, these are paid for by the family and not funded by the NHS. Costs can vary by the provider.
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
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.
Can my child stay on the local NHS waiting list if we choose a Right to Choose provider?
Families may remain on a local waiting list while considering a Right to Choose referral. However, once an assessment pathway has started with a Right to Choose provider, children would not usually continue to progress through a local NHS assessment pathway for the same assessment. Please discuss any questions with your GP before proceeding.
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.