Neurodiversity- How to have a (Social) Return on Investment

Neurodiversity – 'More bang for your buck'

We have only so much money to spend and there are increasing demands on services. How can we actually ensure more people have equitable opportunities to succeed? There have been suggestions we screen ALL children for ND conditions. This newsletter provides some reasons ( and some questions at the end too ) why I believe this is not the right approach.

Let me know what you think!

So what is SROI?

It's an obvious statement but we need to have value from each ￡ spent both in the short and longer term. Not everyone who is neurodivergent will be a CEO but each person can be a part of society if given the opportunity to do so.

This is not just considering a Return on Investment?(ROI)- a performance measure used to evaluate the efficiency of an investment BUT considering the Social Return on Investment (SROI). This is a method for measuring values that are not traditionally reflected in financial statements, including social, economic, and environmental factors. This approach can identify how effectively organizations use their resources to provide value for their communities.

The facts

A conservative estimate of prevalence rates of neurodevelopmental conditions [4] is 1 in 8 children in every classroom. In the UK, there are more than 1.5 million children (0–19 years) with one or more challenges that may require support.?

We all recognize the impact Covid-19 has had and how this has put huge pressures on health care professionals. NHS general waiting lists for services are growing. This includes neurodevelopmental services, where there are already?long waiting lists?but are getting even longer[ 5], with some areas already holding waiting lists for ADHD of?more than 5 years. A child could potentially be identified in primary school as possibly having ADHD and may not get a diagnosis until they have left school at 16 years!?

Don't screen everyone...

Screening everyone for neurodivergent traits such as Dyslexia and Autism is not the answer as it doesn't resolve the 'what next.'.. and begs the questions how, when, how often, and by whom...( ***Read more questions at the end of this blog** )

If limited funds are diverted to deliver screening there would be less money for support, including helping people who are not in school, those unemployed, or in prison because of or compounded by their learning differences and challenges.

We need to start upstream

In?2008?I wrote an article describing the need to empower parents of neurodivergent children and concluded that:

"Increased emphasis on encouraging patient empowerment and creating a patient-centred approach to health care (Stuart, 2001; Bax, 2001) provides a stimulus to consider new and innovative ways of both supporting and informing parents as soon as they have a concern about their child, in order for them to feel that they are in control of care".

10 years later I again wrote with colleague Deb Judge about today's version of Tudor Hart's?inverse care law?in relation to neurodiversity and the need to start upstream. To maximize our resources we need to utilize what we have.

• We will never 'run out' of parents who want to help their children.
• Many community groups are already doing amazing work and schools working in partnership also makes communities grow and thrive even more.
• We are short of professionals so we need to use them judiciously and to support those with the most complex needs. We need a stepped model. Look at the great Partnering 4 Change model from Canada.
• A central repository of accessible /translatable materials that can be accessed dependent on functional needs. I see too often one authority/organization and then another creating their own resources.
• Initial Teacher Training including a deep understanding of child development- typical and atypical.
• Implementation of a Graduated response as outlined in education in relation to SEND.
• Implementation of Universal Design Principles - woven into the fabric of every school, the design of curriculum and assessment frameworks.
• Neurodevelopmental pathways that are clear - with a 'no wrong door' approach taken.

Economic and emotional costs

We have big numbers to content with. Around 15% of the general population of adults are neurodivergent along with 1 in 3 people in prison?having one or more neurodevelopmental conditions, with ADHD, low literacy skills, and undiagnosed?Developmental Language Disorder (DLD) being common.

Siloed services cost us a lot

I completed an economic impact study for?DCD?and others have done one for?ASD.

There is evidence of the life-long impact socially, emotionally and on educational and employment outcomes [3] especially where identification of need has not been made or appropriate support and opportunity given. Despite the knowledge that neurodivergent traits are very common in children in alternative provision including TBI, ADHD, and DLD they are not routinely screened for.

There are clear indicators that screening in silos hasn't worked and early identification of needs undertaken upstream may have a real value for us all. Parents often go from place to place telling their child's story again and again. This is costly in all ways.

The ‘pure’ child is rare. Few children have isolated challenges in just one cognitive domain [1]. There are also higher rates of co-occurrence of neurodivergent conditions with a range of physical and psychological conditions. But the professional lens we look through biases the diagnosis given and is influenced by training and the tools we have.

We are all a bit messy!

Despite the pathway to support usually influenced by the most dominant symptom ( and reported in stats as such), we need to take a more dimensional view as?Thapar?discusses so well.

We use categorization to try to deal with the messiness. But we need to recognize and?embrace this complexity.

There is a need to consider the impact of cumulative adversity+neurodiversity and take a child/person-centered approach rather than a label-led approach. This moves from a purely?medical model?to taking a more?bio-psychosocial model?of delivery which seeks out talents and strengths as well as recognizing and not dismissing the challenges that exist. Each child/person will be different in their life trajectories.

**Take 5 minutes and read the work by?Minnis and Gillberg?for even more evidence.**

Technology can help deal with complexity

Today's technology can manage complex data and machine learning and help deliver personalized responses. Interestingly this month's ACAMH journal is all about the potential for this to happen. It allows for the clinicians to bring data together from multiple sources to gain this complete view.

The ACAMH paper highlights what happens when there is a delay.

"Without accurate recommendations for each individual, the possibility of longer-term impairment increases along with the personal, societal, and economic cost of delayed diagnoses?"

More than 10 years ago I started building Do-IT Profiler to try and respond to this complexity and as a consequence of my clinical, academic and personal experiences.

We have built a secure Cloud-based modular, accessible, and contextually driven assessment system that allows for both personalized and localized guidance. It can speed up the collation of multi-source information needed to gain a more complete understanding of a child such as from parent, teacher, and the child themselves. Guidance is delivered in different accessible formats. It is not THE answer but is a tool to help professionals manage some of the complexity and reduce the administrative load.

We have screened and supported 10s' of 1,000s' of people from different settings including health, education, justice, and employment, and provided instant and functional guidance for each person in the context of their age and life setting. Data is instantly presented in different formats. At a group, level it can aid planning of educational and clinical services and target group interventions.

This system can be translated into multiple languages. Large data sets are starting to allow us to be able to create cumulative adversity markers and we can use predictive analytics. We recently were voted in the top 10 EdTech companies in the UK for 2022.

The tools are continuously being adapted for different settings through discussion and collaborative working across professional groupings and are being trialed at present in several CCGs.

Start by identifying learners of concern

There is a need to determine who are the most complex and vulnerable children in order to manage increasingly long waiting lists. A number of models for reducing?waiting lists for single conditions?such as ADHD have been mooted.

But for real SROI we need to identify and focus on the 'at risk groups'. I have called children/young people and adults as Learners of Concern .

'Learners of Concern' are individuals who are more likely to be neurodivergent.

Navigators not gatekeepers

Most services have a gatekeeper who needs to agree when and if a referral can be made to specialists. To access services in the UK, the gatekeepers (who are usually GPs and/or teachers in schools or educational psychologists from local education authorities) need to know the processes for action, when to make referrals and into which service. The ‘bad enough’?principle is used to limit the numbers and is an all-or-nothing approach.

Navigators on the other hand can help parents to access support early rather than finding reasons why they can't gain help and provide guidance and help to reduce the long-term impact.

Reduce biases

Routes into services may vary from area to area, with some areas in the UK having developed defined pathways into the services. The reality is that social and family factors may make it harder for some families to seek help or access services, or even know where to go even if they are referred for assessment. Prevalence rates increase with higher socioeconomic status (SES) in a dose-response manner [9]. A study in 2021 from the Education Policy Institute (EPI), highlighted the?significant?inconsistencies in how children with special educational needs and disabilities (SEND) in England are identified and supported. The primary school the child attends makes more difference to their chances of being identified with neurodivergent traits/SEND at a lower or higher level than anything about them as an individual, their experiences, or which LA they live in. This represents inconsistent and variable screening and assessment systems, The least disadvantaged children in the most disadvantaged neighbourhoods have the highest chances of being identified with SEND. The better off in these areas capture resources.

It is ironic that: “children with ASD are significantly more likely to receive support from schools and SLTs, independent of children's language, literacy, cognitive scores and behavior.” as shown in?Dockrell et al’s?important research study in 2019. The result of their study showed that children with a label of ASD with lower levels of language challenges got more Speech and Language support than those with a more severe developmental language disorder. The 'golden ticket' of gaining a diagnosis of ASD gave more resources and this had nothing to do with the level of need. Isn't this Illogical? It provides perverse incentives.

Listen to what parents want

Ceri Reed, chair of Parents Voices in Wales, and an amazing person recently asked parents what was their greatest concern. Late support was their greatest concern.

Waiting can also mean parents have been left adrift and/or the child develops secondary consequences of lack of support. Functional approaches mean help can happen regardless of label.

Take a 'do-no-harm' approach.

Many parents find the process of knowing what to do and where to go for help baffling. It also requires and assumes good literacy, organizational and digital skills ( and time and energy). So many parents have told me it feels like a battle or fight.

By giving teachers the knowledge across all neurodevelopmental conditions we can all have an impact.

Can't we provide?functional?guidance if a child has difficulties writing, spelling, dressing, or sleeping? As a doctor, I see that ‘do no harm’ is important to me but ‘doing nothing’ or 'waiting for something doesn’t seem to be much good at all! Personalized guidance provided in a timely manner along with using universal design for learning principles will mean our ￡￡s can stretch further.

Take a child and family-centered approach

International Classification of Functioning, Disability, and Health (ICF)?is a World Health Organisation great framework recognized globally, for describing a child's needs and the impact that challenges have on activity, participation, and functioning. It emphasizes the important relationship between the environment and outcomes?[6].?Let us use the professionals we have ( because they are in short supply) including helping parents (who are the expert of their own children) and maximizing the local community resources that already exist.

We could potentially save money!

On the basis that the average annual cost of a person in prison is a very conservative ￡41,000 in the UK?and there are more than 82,000 people in prison – if we could identify earlier and support even a very 'conservative' 10% of those who are neurodivergent (so they wouldn’t get to prison) that could save over ￡400 million pounds per year! The reality if we start sooner a large percentage of people would be actually contributing to society and we could change the pattern of intergenerational adversity that we see.

The author

Professor Amanda Kirby comes from a very neurodivergent family with very spiky profiles. This has driven her interest and passion to make a difference over the past 25 years. She ran a transdisciplinary service for more than 20 years. She’s not ready to stop helping to make change happen.

She is CEO of Do-IT Solutions - a tech for good company - www.doitprofiler.com.

Some references

1.Kaplan BJ, Wilson NB, Dewey D, Crawford SG. DCD may not be a discrete disorder. Hum Mov Sci. 1998;17:471–90.

2. Kirby A, Williams N, Koelewijn L, Brindley LM, Muthukumaraswamy SD, Te Water Naudé J, et al. Benign: childhood epilepsy with centrotemporal spikes (BECTS) and developmental coordination disorder. Epilepsy Behav. 2017;72:122–6.

3. Blank R, Smits-Engelman B, Polatajko H, Wilson P. European Academy for Childhood Disability. European Academy for Childhood Disability: recommendations on the definition, diagnosis and intervention of developmental coordination disorder (long version). Dev Med Child Neurol. 2012;54:54–93.

4.American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Washington, DC: Author; 2013.

5.NHS Waiting Times. Myer, Landon (Editor). https://www. kingsfund.org.uk/publications/articles/nhs-waiting-times PLoS ONE. 2010;5(7): e11551.

6.Zwicker JG, Missiuna C, Harris SR, Boyd LR. Developmental coordination disorder: a review and update. Eur J Paediatr Neurol. 2012;16(6):573–81.

7.Mancini OV, Erigoli D, Cairney JE, Roberts LD, Piek JP. The elaborated environmental stress hypothesis as a framework for understanding the association between motor skills and internalizing problems: a mini-review. Front Psychol. 2016;7(2):239.

8. Kirby A. Developmental co-ordination disorder and emerging adulthood: not just a motor disorder. J Adult Dev. 2011;18(3): 105–6.

9.Durkin MS, Maenner MJ, Meaney FJ, Levy SE, DiGuiseppi C, Nicholas JS, et al. Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study (socioeconomic status & autism). Dev Med Child Neurol. 2012;54:54–93.

10.Mary Ann Megan Cleaton,?Paula Kate Lorgelly,?Amanda KirbyDevelopmental coordination disorder in UK children aged 6–18 years: Estimating the cost. (2019)

11. Kirby, A, Judge D (2018) Addressing the Inverse Care Law in Developmental Coordination Disorder and related Neurodevelopmental Disorders.

Why screening everyone is not the answer....some questions to possibly consider.

1. What are you screening for? How are you defining what is 'in' or 'out'? Who determines cut-offs? What happens if you are not 'quite bad enough'? Is this framing about disorder/deficit and disability?
2. How are you screening across neurodivergent conditions as they all overlap with each other or are you going to choose some over others.. not? Do you value Autism more than Dyspraxia(DCD) OR Dyslexia more than ADHD/ DLD or Tic Disorders?
3. What tools are you going to use? How will you choose and how will they be administered/scored? Who determines the cut-offs?
4. Who will do the screening and how will it be undertaken? What happens if there is a lack of time or the learner doesn't speak English as their first language?
5. What is the role of the SENCO?
6. When will you screen? Once or more than once? Some children change their presentation over time or have acquired neurodivergent traits after trauma for example.
7. What happens when you identify one condition - will this lead you to screen for others that often overlap e.g. ASD+DCD+ADHD?
8. How does the screening link to local neurodevelopmental services in the area and then back to schools?
9. How will the identification of specific challenges link to individual learning plans?
10. How will parents be involved?
11. What happens while people are waiting 2-3 years for a diagnosis?
12. What happens at times of transition when demands may increase?
13. What is the knowledge of teachers to intervene by specific conditions?
14. Has 'universal design' been considered to reach more learners equitably and effectively?
15. What about considering neurodiversity training as standard in ITT and post-qualification?
16. Who misses out on this approach? The missing middle- again and again e.g. low SES, parents with neurodivergent traits, schools with higher rates of exclusion
17. Will services be diverted from other conditions if we focus more on neurodiversity? Physical challenges, childhood cancers, degenerative conditions, genetic conditions?
18. How do you square the budget if it is spent all on screening and there is none left for intervention?