The Donaldson Trust are delighted to be working with Professor Amanda Kirby, who is providing an external evaluation of our services and training our staff in the use of the Do-IT Profiler, which will benefit the person centred approach valued by the Trust.
Amanda has kindly written this blog for us, explaining why the separation of services is not always effective, and the need for person centred and needs led support approaches, focused on the individual.
You can find more of Professor Amanda Kirby’s blogs here: Neurodiversity 101
Rationale for Do-IT Profiler
There is extensive evidence that neurodevelopmental conditions including Dyslexia, Dyscalculia, Developmental Coordination Disorder (DCD), Attention-Deficit/Hyperactivity Disorder (ADHD, including ADD), Autism Spectrum Disorder/Condition, Developmental Language Disorder (DLD)(including speech and language difficulties) and Tic Disorders (including Tourette’s Syndrome and Chronic Tic Disorder) co-occur. Everyone will come with strengths and challenges, and their support needs might vary because of things at home and at school, both now or in the past.
Defining neurodiverse conditions
One of the key issues regarding each child is that diagnosis is made based on a set of symptoms using international sets of criteria. However, other factors, such as Adverse Childhood Experiences (ACEs, including childhood abuse) and head injuries (potentially causing Traumatic Brain Injury (TBI)) may also result in attention, concentration, social, memory, cognition and/or other difficulties that can mimic neurodiverse conditions and symptoms of one may be misdiagnosed as another.
Lack of identification of Neurodiverse conditions
Some children and young people fail to have their neurodivergent condition(s) identified and so do not gain the support they require. Lack of identification may be attributable to the route to diagnosis, the access to it or knowledge of how to gain support. This is particularly true of individuals with multiple neurodiverse traits that don’t quite meet a specific diagnostic criterion or who have been assessed by different professionals. It may also happen where individuals have both neurodiverse sand mental health condition(s) intersect and where professional training and knowledge of both areas may be lacking.
Some children may have missed out on gaining the appropriate support because they have been excluded from school or moved around the care or school systems. The diagnosis an individual receives remains, in many cases, determined by the services provided in their local area and the knowledge and biases of parents and gatekeepers, such as teachers and GPs.
How can you provide appropriate child centred support?
Everyone will be different, but individuals often experience cumulative adversity – increasing, accumulating negative experiences over time.
The current diagnostic systems often categorise individuals as having distinct, categorical, symptom-based disorders (ADHD, or ASD or Dyslexia, etc.). However, a categorical approach like this ignores the fact that Neurodiverse conditions appear to be inter-related and often co-occur with each other as well as other common, potentially confounding factors such as adverse childhood events. They also co-occur commonly with mental health conditions such as anxiety and depression.
Providing accurate, appropriate, and targeted support requires a comprehensive, person centred and holistic assessment. It moves away from rigid cut offs and screening of one condition in isolation. The cumulative challenges experienced by some young people with multiple Neurodivergent traits may be functionally more impairing than the challenges experienced by someone who meets diagnostic criteria for, and has symptoms of, a single condition only.
This is where we are working with The Donaldson Trust to provide the initial screening tools to understand each young person (including their strengths).
Working in silos and focusing on some specific conditions and not others results in a lack of adequate support and could mean the child has developed nascent mental health difficulties, disaffection with school and/or a negative relationship with their parents. They may have spent years unable to access the curriculum, with long-term consequences for their educational and employment outcomes, as well as offending behaviour.
In contrast, if they had initially been referred for a comprehensive Neurodiversity screening process, they could have been screened and monitored for all commonly associated Neurodivergent conditions, resulting in timely diagnoses (if appropriate), earlier initiation of support and potentially better long-term outcomes.
Another issue associated with the separation of services into silos is that data-sharing is frequently inadequate, if it happens at all. Thus, for example, in a prison context the mental health team may not inform the substance abuse team about an individual’s ADHD diagnosis, even though this may affect their likelihood of drug relapse (Bihlar Muld et al., 2015). Equally, education may not inform either the mental health team or the substance abuse team about the individual’s Dyslexia, resulting in the individual being given self-help materials that they cannot read. This lack of joined-up thinking and working has the potential to severely affect people in prison.
This may be similar with other services in the community e.g., housing, voluntary, social care, health, and education services all seeing the same person and not realising they are ‘bouncing’ around the system.
All of the above models (i.e., single-condition ‘siloed’ services, Neurodevelopmental-specific services and services that rely on prior diagnosis/support to identify service users) are highly unlikely to be sufficiently comprehensive, equitable or fair. They fail to recognise the reality of the conditions they purport to assess.
Neurodivergent conditions are complex and interrelated, they have high levels of symptom commonality with other conditions such as TBI and they are frequently undiagnosed and misdiagnosed. Thus, these systems risk leaving the most needy individuals unidentified and unsupported, consequently rendering them highly vulnerable and for some a risk of entering the justice system and becoming an offender. (Bradley, 2009; Coates, 2016; Jacobson, 2008; Loucks, 2007a, 2007b; Loucks and Talbot, 2007; Talbot, 2007, 2008; Talbot and Riley, 2007). Unfortunately, until recently these systems appear to be the predominant service models, both within the community and within the Justice Sector.
Taking a person-centred, needs-led approach
So, categorical approaches to the diagnosis and support of Neurodivergent individuals have many serious shortcomings.
An alternative to these, are dimensional approaches – approaches which consider an individual’s unique needs as a whole, rather than determining whether the individual fits certain diagnostic criteria and then providing support only if these diagnostic criteria are met.
Dimensional approaches are needs-led rather than diagnosis-led.
A shift away from categorical approaches towards more holistic, profile-based, dimensional approaches have been suggested by some psychiatrists (NIMH, 2014). This approach creates a formulation-based assessment and management plan based on all of an individual’s needs, whether they group neatly into diagnostic criteria or not. The key areas of challenge for that individual are identified with respect to their current social and physical environment and appropriate, holistic support is provided.
Dimensional approaches are also typically person-centred – they put the person first and consider them as an individual rather than a category or type.
Person-centred approaches are often based on a biopsychosocial model of disability. This model incorporates the best aspects of two previous models of disability: the medical model and the social model (Engel, 1977, 1980). It is based on the idea that disability is the combination of differences in people’s bodies (bio-), differences in people’s minds (psycho-) and the mismatch between people’s needs and the physical and social environment that they live in (social).
By taking a person-centred approach using the biopsychosocial model, we can better support Neurodivergent people, resulting in better outcomes for all.
Accessible and effective profiling of complex adversity using Do-IT Profiler
There is a clear need for timely, practical, and comprehensive profiling using dimensional, needs-led, person-centred approaches. This will allow parents and teachers to gain a thorough understanding of each child’s specific strengths and challenges. This approach works at later stages in life as an apprentice, in the workplace or in justice settings.
To do this, more holistic screening and support approaches are required, as needs and suitable interventions will vary between individuals and over time.
One challenge to delivering this sort of approach to screening and support has been how to practically capture this information, especially if there are no specialists available to undertake this work.
Accessible, voiced, computer-based screening solutions can be self-administered and can automatically and immediately generate functional guidance as a first step to providing support. As scores and personalised initial support recommendations are automatically generated, the administrative burden of screening participants is greatly reduced and the risk of errors during manual data-entry or scoring is eliminated.
Computer-based screening solutions like the tried and tested Do-IT Profiler allows for information to be easily communicated to relevant stakeholders across services, breaking down silos and allowing easier interdisciplinary working. Overall, they have the potential to identify those most in need of support rapidly, efficiently, and comprehensively.
This may save time upstream, identify strengths and allow conversations about support needs and recommended practical interventions to occur earlier in an individual’s pathway through the educational system, and resulting in more equitable access and improve outcomes.
Professor Amanda Kirby, CEO of Do-IT Solutions., Campaigner for Neurodiversity, Medic, Knowledge Translator, Researcher