Rethinking child neurodiversity

What proportion of the child population is neurodivergent?

It depends on who you ask, what their definition of neurodivergence is and by what methodology you determine who is and who isn't. Narrow definitions seen through a diagnostic lens will land at around 1 per cent of the population. Expansive definitions based on lived experience will land more around 20 per cent. This debate is important because the NHS-led diagnostic system has been designed and resourced for the 1 per cent.

So what happens to the other 19 per cent? They find themselves fighting for support in other services and sectors – from mental health services to specialist education provision to youth justice services.

This debate speaks to the massive rise in demand for diagnosis and why up and down the country we are seeing waiting lists for diagnosis in excess of two years, and in some cases up to five. A child can make it through the whole of their secondary education stuck on a waiting list for diagnosis.

Back in 2019 in Portsmouth, we started a conversation between education, the NHS, children's social care and critically, parents and carers of neurodivergent children, and neurodivergent young people themselves. We learnt five things together:

• Not only were waiting times for diagnosis too long, but even once you got to the front of the queue, there was significant disappointment with what followed the diagnosis. Advice, guidance and support were missing. To quote a parent – 'We waited three years… and for what?'
• Schools told us about the significant issues they were facing in meeting the needs of a wide range of children – exhibiting itself in absence from school, behavioural issues, relationship difficulties and barriers to learning.
• The level of understanding of neurodivergence – what it was and what can be done in the home, the school and the community to make things easier for children – was low across the system.
• Families get referred around the system: from education to the GP, to CAMHS, to therapy services with no one 'holding them'.
• Children and young people experience discrimination, fear and intolerance.

We asked parents what outcomes were important to them. They came up with four:

• 'I want to have a better understanding of my child's differences'.
• 'I want my child's teachers to have a better understanding of their differences'.
• 'I want my child's needs to be met at school / pre-school setting'.
• 'I want to be able to meet my child's needs at home'.

We knew we needed a system-wide transformation. Putting more money and more resources into a diagnosis-led model wasn't going to help. We needed to be led by need.

Nine dimensions

Meanwhile, clinical colleagues in our local NHS community providers were beginning to think differently about a 'profiling' methodology – understanding neurodiversity through nine dimensions of how we function as people. We launched a major piece of co-production lasting 18 months (and throughout the pandemic) involving experts from NHS providers and commissioners, the local authority, schools, the Voluntary and Community Sector (VCS) and of course experts-by-experience - over 80 parents and young people.

Together, we fleshed out the nine-dimension model of profiling. What does neurotypical and neurodivergent look and feel like across:

• Speech and language
• Energy levels
• Attention skills and impulse control
• Emotional regulation
• Motor functioning
• Sensory levels
• Flexibility and adaptability
• Empathising and systemising skills
• Cognitive ability

The vision was to enable professionals and parents to work together to profile a child's neurodivergence using a simple-to-use tool and handbook. This in turn will educate us all on neurodiversity (a psycho-educational approach). Let's then gather together in one place, all the tools, apps, guidance, programmes and equipment that can help children and families thrive. Let's move away from the 'diagnose and close' model and develop a whole-system, 'everybody's business' approach to meeting needs.

Our strategy

Co-produced in 2020, our Strategy has five elements to it:

• Designing the Portsmouth ND Profile (the nine-dimension model), testing it through thorough research, training a wide set of professionals on using it and then spreading it out across the health, care and education system
• Developing a 'resource bank' – what our young people called 'things that help'. We have built an online repository of advice, guidance, tools, strategies, equipment, apps, websites etc that will help families and professionals respond to child neurodivergent needs.  
• ND in Schools – working with schools to make environmental and practice changes to enable children with a wide range of ND needs to feel more welcome, more comfortable and able to learn and make friendships in school.
• Implementing an ND Multi-Disciplinary Team – made up of professionals from the local authority and NHS partners – bringing together expertise from Education Psychology, CAMHS, therapies etc so that we have a 'one-stop shop' for families to get support.
• ND Competencies Framework - the skills knowledge and competencies that everyone needs to develop to enable the city to be a truly inclusive, non-judgemental, tolerant and informed place to live for children with ND needs.

Where are we now?

Following the positive outcomes from a detailed piece of research into the first 51 children to be profiled, we rolled out training to over 500 people across schools, early years settings, health services, the voluntary sector and social care. The resource bank for families and professionals has been gathered and placed online, with a high hit rate showing significant usage. The MDT has been launched and we have provided families with the 'one-stop shop' they asked for.

The impact so far has been promising. Feedback from children and families has been positive and – whilst still early days – we have seen a 92 per cent reduction in requests for formal diagnosis. That figure will not last, and there will continue to be national drivers to getting a formal diagnosis (e.g. additional support in UK universities). But in the main, we are seeing needs being met without relying on the previous clinically-led model.

There has been extensive national interest in the model we have developed. Portsmouth leads a National Community of Practice on needs-led ND models and we have presented the model to over 40 other areas – from Cornwall to Cumbria, London to Wales. The advice we provide to other areas is a good summary of the learning from our journey:

• Bring NHS clinicians, joint commissioners, local authorities and schools together to co-produce solutions – it is essential in thinking differently.
• Co-produce with families – they are your (and children's) biggest asset.
• Focus on needs and not 'activity' and 'processes'.
• Allow the space for people to define their own outcomes – they almost certainly won't be the same things we currently measure! 
• Health outcomes, education outcomes and wellbeing outcomes are interdependent – focus on care groups, not individual outcomes.
• Unmet needs around ND are almost certainly more significant and affect far more children than you may think. We believe that underpinning a range of poor outcomes for children is an unmet ND need -– one of the 'big three' together with childhood trauma and early language development. 
• Partnership and integrated working - when well facilitated, led and genuinely valued – is the bedrock of true innovation and transformation. Commissioning is an art, not a science.

Reflections from the editors

We invited Hayden to write from a position of aspirational and innovative practice in commissioning, responding to the changing understanding of neurodiversity and the national increase in demand for neurodevelopmental assessment services. We feel the Portsmouth Profiling Tool has huge potential for shifting individual and societal understanding of neurodiversity, and we have seen the national interest in it. However, as an ND service in East Sussex, we have shared our feedback on the tool and feel that developing a version two is essential to improve the tool in the following areas before it can be adopted:

• to bring it up to date with current research (especially community-informed evidence)
• to make the tool more neuroaffirmative, in its underlying assumptions, language and framing of difference
• to revise the nine dimensions that the tool measures to bring them in line with research and community preference e.g. removing empathising systemising skills
• to move away from a linear (high to low) functioning-based tool (within which is inherent judgement about what is the 'best' way to be)
• to simplify the tool for use

As we go to print, a second version may well be underway, but if you are a researcher interested in supporting the development and evidence base of this tool please get in touch with Hayden.