Frequently asked questions: Cheshire and Merseyside neurodevelopment pathway
Below are responses to frequently asked questions (FAQs) regarding the Cheshire and Merseyside neurodevelopment pathway.
I have heard that the profiling tool used in Portsmouth will be used in Cheshire and Merseyside. Is this true?
This is not true. Early adopter sites Wirral and St Helens used a profiling tool from Portsmouth and Cornwall (called This is Me) to understand how well this worked. Over the last 6-9 months, Centre for Autism, Neurodevelopmental Disorders, and Intellectual Disability (CANDDID) have developed a new Cheshire and Merseyside profiling tool with stakeholders and people with lived experience. This is called the Knowing ME profiling tool. It is neuroaffirmative and builds on good practice across a range of profiling tools used throughout the country. Wirral are using the This is Me profiling tool until they transfer over to the new tool, Knowing ME, before May 2026.
How will the Knowing ME tool benefit my child?
The Knowing ME tool is used to build a profile of your child’s individual strengths and needs so that we can offer you flexible, tailored support. For some children and young people, this might mean reasonable adjustments at school or a referral to a sleep service, for example. For others, it may highlight the need for assessment or diagnosis sooner.
In the past, children, young people and families may have had to wait for a formal diagnosis before they could access this support. However, the Knowing ME tool means that support needs can be identified much earlier, with no requirement to have a neurodevelopmental assessment or diagnosis first.
We are currently developing a digital version of the tool for those who prefer to complete it electronically.
Is the Knowing ME tool going to replace formal neurodevelopmental assessments?
No, the Knowing ME tool will not replace neurodevelopmental assessments. It is designed to help the teams working with you and your child to learn about their strengths and needs so that they can offer personalised support earlier in the process. Children and young people can receive this support while they wait for an assessment, after they have been assessed, or if they have not been referred for an assessment.
Will the Knowing ME tool stop my child from getting a diagnosis?
No. We understand how important a neurodevelopmental diagnosis can be to children and families for many different reasons. The tool is not intended to be a barrier to this; it is designed to help children, young people and families access support based on individual needs before, during and after the assessment process. If you decide to access support as a result of the Knowing ME tool, it will not prevent your child from receiving a diagnostic assessment.
What if we don’t have an assessment or diagnosis – can we still get support?
Yes. We know that not every neurodiverse child will need or want a diagnosis, but they may still benefit from support in some areas. The tool will help to identify these areas based on your child’s individual needs, regardless of their formal diagnosis (or lack of). If you decide not to pursue an assessment for your child, or if they don’t meet the criteria for referral or diagnosis, you can still access support via the Knowing ME tool.
Were neurodivergent children and their families involved in developing the tool?
Yes. It is very important to us that the voices of children, young people and families are at the centre of the Knowing ME tool, so we have been working closely with them, and with local organisations, to co-produce and evaluate the tool. We chose our training partner, Koala North West, based on their excellent track record of supporting and advocating for neurodiverse children, young people and families in the region. Additionally, project meetings involve representatives from Parent Carer Forums and third sector/voluntary organisations from across Cheshire and Merseyside to ensure that the voices of children, young people and families are represented at every level. Many of our clinicians and leads also have personal lived experience of neurodiversity in addition to their professional experience.
Is there a risk that this will encourage children to mask?
We understand that masking can have a negative impact on neurodivergent people, and we have consulted with children, young people and families to ensure that the tool does not encourage this. The tool uses neuro-affirmative language, does not portray neurodiversity as inferior or deficient, and focuses on recognising strengths and support needs. It does not seek to change, discourage, or “re-train” valid neurodiverse behaviours or communication styles. We will continue to refine and improve the tool based on the co-production feedback we have already had from children, families and professionals, and on further co-production feedback going forward.
Will the Knowing ME profiling tool now be the only route to my child getting an assessment or diagnosis?
The profiling tool forms part of the graduated approach to neurodevelopment assessment and is considered best practice for understanding a child’s needs. While it is expected that the majority of referrals will include a completed profiling tool, clinical judgement will always be applied to ensure that children with the most urgent needs are not delayed in accessing diagnostic assessment. The tool should support, not hinder, timely access to appropriate services.
Will my child have to wait after the Knowing ME profiling tool is completed before they can be referred for an assessment or diagnosis?
The new neurodevelopmental pathway prioritises meeting the needs of neurodivergent children without waiting for a formal diagnosis. When a professional completes the profiling tool with a child/young person and their family, they should agree an appropriate review date based on the needs identified and the support in place, with 12 weeks as a maximum timescale. If a diagnostic assessment is needed, referrals can be made using the information in the Knowing ME tool. Referrals are triaged locally to determine the best support, and community support remains available throughout. NHS providers in Cheshire and Merseyside use a standard prioritisation tool to ensure children with the highest needs are seen as quickly as possible. The 12-week review is a guideline, not a mandatory waiting time, and earlier action should be taken if this meets the needs of children, young people and families.