Professor Amanda Kirby, CEO of Do-IT Solutions., Campaigner for Neurodiversity, Medic, Knowledge Translator, researcher
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 and have a considerable impact on individual.
Prevalence of Neurodiversity
Neurodiversity is common within the general population. For example, among UK and international children estimates of the diagnosed prevalence of ADHD are-2.2-4 % whereas for Dyslexia these range around 5-10% and for Developmental Coordination Disorder from 2-5% depending on the screening tools used and definitions. (Cleaton and Kirby, 2018).
Defining Neurodiverse conditions
One of the key issues regarding Neurodiversity is that diagnosis is made on the basis of a set of symptoms – using, for example, include DSM-5 (APA, 2013) and ICD-10 (WHO, 1993) 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 (Babikian et al., 2015; Chang et al., 2018; Van Der Kolk, 2005; Yang et al., 2016). Neurodiverse conditions, TBI and ACEs are also highly co-occurrent (Cleaton and Kirby, 2018) and symptoms of one may be misdiagnosed as another (e.g. Bishop et al., 2008).
How can you provide appropriate support?
Providing accurate, appropriate, and targeted support requires a comprehensive, person centred and holistic assessment.
Lack of identification of Neurodiverse conditions
Many Neurodiverse children and young people fail to have their Neurodivergent condition(s) identified and so not gain support. Lack of identification may be attributable to the route to diagnosis or the access to it or knowledge of how to gain support.There are various routes to gaining a diagnosis of a Neurodevelopmental condition, which may be inconsistent and for some difficult to access (e.g. Jones et al., 2014). This is particularly true of individuals with multiple Neurodiverse traits that don’t quite meet a specific diagnostic criteria or are assessed by different professionals (Brett et al., 2016; Kentrou et al., 2018) . This is also true where individuals with co-occurring Neurodiverse and mental health condition(s) intersect and where professional training and knowledge may influence the diagnostic process and the intervention or support provided (Barkley and Brown, 2014; Takara et al., 2015).
There are many reasons why a person’s Neurodivergent traits may be missed. In childhood this may be related to parental engagement with health and educational services, which may be limited (Astle and Bathelt, 2019; Hamed et al., 2015). Some children may be or have been excluded from school and/or may also be moving around the system (e.g. as a result of being a Looked After Child and/or Young Person (LACYP)) (Jacobson et al., 2010; Oak Foundation, 2019). One or more of these intersecting factors may result in the person being less likely to have gained or gain a diagnosis.
Varying levels of provision of services
There are also ‘postcode lotteries’ affecting the provision of diagnostic services in the UK (Lamb, 2018) and increasing waiting lists in many areas because of the impact of the pandemic.
The diagnosis an individual receives remains, in many cases, determined by the services provided by their local healthcare board (Ross, 2018), the knowledge and biases of parents and of gatekeepers such as teachers and GPs (Miyasaka et al., 2018), for those in education.
In addition to this is the knowledge of the particular specialists that are seen (Astle and Bathelt, 2019) and the ability of the individual and/or their parents to access services (Keenan et al., 2010). In particular, some less well-known conditions, such as DCD and DLD, often fail to be considered and assessments for these may be particularly difficult to access (Missiuna et al., 2006).
Misdiagnosis is also a potential issue affecting individuals with Neurodivergent traits.
For example, ADHD (Horton-Salway, 2011), ASD (Midence and O’Neill, 1999), DLD (Ripley and Yuill, 2005) and other Neurodiverse conditions are frequently misdiagnosed as ‘bad behaviour’ or young people are put under the banner of SEMH (Social, Emotional, Mental Health) rather than being screened for neurodivergent traits such as ADHD or DLD.
In other cases, a neurodisability may be misdiagnosed as another condition (e.g. Aggarwal and Angus, 2015). Confusion may also occur when history of head injury is not considered, as TBI can result in ‘secondary’ ADHD as well as symptoms that mimic ASD and ID (Babikian et al., 2015; Chang et al., 2018; Compton et al., 2017; Keenan et al., 2008; Max et al., 2005a, 2005b; Yang et al., 2016). In particular, some children may appear to ‘recover’ from their TBI(s), as the behavioural impact may not become apparent until adolescence (Tonks et al., 2017). In these cases, symptoms are infrequently correctly attributed to the TBI.
Females appear to be at particular risk of under- and misdiagnosis of Neurodivergent conditions, although so far this has only been investigated for ADHD (Nussbaum, 2012) and ASD (Loomes et al., 2017). This has been also seen in DCD (Kirby et al in press).
Females with ADHD more often have the predominantly inattentive type (Biederman et al., 2002; Gershon, 2002), which is usually associated with less disruptive and externally-obvious symptoms (APA, 2013). Females with ADHD are also less likely than males to exhibit physical aggression and other externalising behaviours (Rucklidge, 2010). Likewise, females with ASD generally present differently to males. They tend to have more age- and gender-typical restricted interests (Hiller et al., 2014) and often mimic peers’ social interactions, although without necessarily understanding them (Dean et al., 2017; Lai et al., 2017). Additionally, females with ASD tend to have higher levels of social motivation (Sedgewick et al., 2016) and lower levels of repetitive behaviour (Harrop et al., 2015; Mandy et al., 2012; Van Wijngaarden-Cremers et al., 2014). These differences in presentation likely contribute to the under- and misdiagnosis of Neurodiverse females.
Potential impact of missed diagnoses and misdiagnosis
Neurodivergent individuals will be all different but more often experience cumulative adversity – increasing, accumulating negative experiences over time. This includes a range of poor psychosocial outcomes relating to offending behaviour, physical and mental health, education and employment (Cleaton and Kirby, 2018).
Mental health and Neurodivergent conditions
Neurodivergent people are at increased risk of mental health difficulties (Cleaton and Kirby, 2018). These include common conditions such as Anxiety Disorders and Depression, but also a range of other conditions such as Eating Disorders, Obsessive-Compulsive Disorder, Personality Disorders and Schizophrenia (Cleaton and Kirby, 2018). This may mean there are multiple access points where they may enter services and again is dependent of the knowledge of those gatekeepers such as General Practitioners.
Neurodivergent conditions are also associated with elevated risk of suicide. Suicidal ideation, suicide attempts and suicide completion are all more frequent in individuals with ADHD (Impey and Heun, 2012) and individuals with ASD are 7.6 times as likely to die by suicide as general population controls (Hirvikoski et al., 2016). Individuals with Dyslexia and/or Dyscalculia are 2.2 times as likely as controls to have ever attempted suicide (Fuller-Thomson et al., 2018). As well as suicide attempts, Dyslexia is also associated with self-harm and suicidal ideation (Alexander-Passe, 2016), as is ID (Giannini et al., 2010).
Current diagnostic and support systems
Categorical or dimensional?
The current diagnostic systems categorise individuals as having distinct, categorical, symptom-based disorders (ADHD, ASD, 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 (Kaplan et al., 2006, 1998, 2001) as well as other common, potentially confounding factors such as TBI and ACEs. They also co-occur commonly with mental health conditions as well such as anxiety and depression.
As well as commonly co-occurring, Neurodiverse conditions also commonly exist at a sub-threshold level. A dimensional approach is similarly to other human characteristics such as height, any cut-off between ‘normal’ or ‘typical’ and ‘abnormal’, ‘disordered’ or ‘atypical’ is arbitrary. It is quite common, for example, for individuals with ADHD or DLD to have what is described as ‘Autistic tendencies’ – i.e. sub-threshold ASD (Conti-Ramsden et al., 2006; Green et al., 2015). Some individuals, despite having functional difficulties in many areas (e.g. attention, social communication, reading, mathematics, memory), do not reach the diagnostic threshold for any of the particular conditions associated with these difficulties. Some people are referred to as the ‘missing middle’ who keep missing out again and again on support. This is because service design and support is usually based on dimensional, not categorical characteristics with minimum thresholds to be met to have access to support.
Diagnostic thresholds can result in inequitable provision of support and services, as they mean diagnosis functions as an all-or-nothing model. They also rarely consider other contributing factors such as TBI, abuse experiences and family disadvantage, when diagnosing.
The cumulative challenges experienced by someone with symptoms of multiple Neurodivergent traits at a sub-threshold level may be functionally more impairing than the challenges experienced by someone who meets diagnostic criteria for, and has symptoms of, a single condition only.
However, without a diagnosis, individuals with sub-threshold Neurodiverse conditions are rarely deemed eligible for educational or medical support even if their overall needs are potentially greater. In a prison or youth offending context, this may be why so few people have received diagnosis – their pattern of needs doesn’t fit the current, categorical service model.
Working in professional silos
A challenge facing Neurodivergent people is that services often operate in different professional silos. For example, Dyslexia, Dyscalculia and, to some extent, DCD ‘sit’ in education, ADHD often ‘sits’ in CAMH services and ID may be separated from both of these into Learning Disability provision. The diagnoses people receive may often reflect the professionals that they have seen rather than the actual difficulties that they have (Astle and Bathelt, 2019).
Working in silos and focusing on particular conditions has severe consequences, as many if not most Neurodiverse individuals have more than one Neurodiverse condition (Cleaton and Kirby, 2018). Even if all of an individual’s diagnoses are, eventually, made, working in silos means delays may be exacerbated. For example, if a child with DCD, ASD and Dyslexia was referred to a clinic because of social communication concerns, they would (after reaching the top of the, typically very long, waiting list) receive a diagnosis of ASD. However, they would then have to be referred to a motor disorders (DCD) clinic, with another very long waiting list, to be diagnosed with DCD. Later, perhaps after a few years at school, their reading difficulties might become increasingly obvious and they might be referred to an educational psychologist for a Dyslexia evaluation, with yet another long wait. By this point, years without adequate support 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 services, social care, health, and education 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 appear to be the predominant service models, both within the community and within the Justice Sector.
Taking a person-centred, needs-led approach
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 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 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 approached. This will allow parents and teachers to gain a thorough understanding 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 rapidly, efficiently, and comprehensively the most in need of support.
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.
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