Neurodiversity: What’s in a name?

Assessment for suspected neurodiversity is one of the most common requests we receive. What might seem a relatively simple query has many essential nuances. For example, neurodiversity is complex, and there are often significant overlaps. Educational and Child Psychologists have specialist training to assess and contribute to the complex differential identification process with colleagues in health, education, and care.

In this blog, we will discuss the rich picture of neurodiversity. We will review what neurodivergence means, the considerable variability between and within the various names used to describe different neurodivergence, and how we can help untangle this web with you.

What is ‘neurodivergence’?

Neurodivergence is a conceptual umbrella term that describes differences in how a person perceives, interacts, and experiences the world. What this looks like for each person varies widely but can include differences in learning, sensory processing, communicating, socialising, sleep, mood (or, more broadly, emotion control), motor coordination, and cognitive function (e.g., planning, attention, reasoning, perception, and so on).

However, as an idea, neurodivergence is often misunderstood and oversimplified. Such simplification has led to specialisation – a narrowing of how a person is seen – which risks losing the person and largely ignores the interwoven nature of human beings:

We are so insistent on the distinction between disorder and not disorder (normalcy) that clinics and clinicians become more and more specialised and cater to the needs of children with “autism spectrum disorder/ASD only,” “Attention-Deficit/Hyperactivity Disorder/ADHD only,” “Language Disorder only,” “Reactive Attachment Disorder/RAD only,” or “Tourette syndrome only.”

p.1: Gillberg, Fernell, & Minnis, 2013

Those with an identified neurodiversity may adopt the label(s) given to them to understand themselves and share their experiences with others. Some will not. Others – particularly children – will have limited agency in the matter. There is also a growing number of people without a formal identification who self-identify as neurodivergent.

Defining ‘difference’

Neurodivergence affects around 1 in 10 people in the UK, with an exponential increase in identification in recent history. By way of example, studies into Autism have found an almost 800% increase in diagnosis over ten years. ADHD – which is amongst the most prevalent neuro-differences in the UK – is estimated to affect around 5% of children and 4% of adults. Yet the number experiencing ‘ADHD-type’ characteristics – that is, those who display ‘traits’ of but do not meet ‘diagnostic thresholds’ – is thought to be much higher.

The context in which neurodiversity exists has invited attempts to (re-)define what exact combination of observable characteristics ‘qualifies’ someone for a diagnostic label. Typically, diagnostic manuals – the DSM and ICD – provide a list of variables upon which a person is compared to the ‘typical’ population. ‘Typical’, of course, is an ever-changing benchmark. For example, ADHD did not exist before the late 1980s when it was included in the revised DSM-3 and was not entirely recognised in the UK until 2000. Yet, that is not to say no one presented in a way we might now describe as ‘ADHD’. So, ideas are changeable, which is essential because a single idea (e.g., ADHD) can overlook important knowledges (that is, knowledge held by the person, within the family, of carers and teachers, culture, and similar). Such excluded knowledge could lead to an alternative conclusion – which may or may not be related to neurodiversity. In other words, what we ‘know’ can only be relative to the context, including language, culture, personal experiences, and societal norms. All of which are forever changing, too.

Neurodivergence in three strands

Current thinking around neurodiversity can be (cautiously) separated into two broad categories: developmental and acquired. Developmental neurodivergence can be further split into clinical and non-clinical.

Neurodevelopmental differences are those which are present from birth. In the case of clinical differences, a medical practitioner – typically a psychiatrist or a paediatrician – must be involved in the identification process. For example, in the case of ADHD, Tourette’s Syndrome, and Autism. An essential reason for having a medical practitioner involved is that these diagnoses’ characteristics can mimic several other medical conditions. For example, ADHD may be better understood as a problem with sleeping, language, hearing, learning, anxiety, absence seizures, and food intolerances (e.g., problems with blood sugar). Similarly, Autism may be better understood as a problem with obsessive or compulsive behaviour, speech delays, disruption of emotional regulation (e.g., social anxiety, trauma-response, or selective mutism), genetic conditions (e.g., Prader-Willi Syndrome, DiGeorge Syndrome, and Fragile X, amongst others), medical causes (e.g., Foetal Alcohol Syndrome or Acquired Brain Injury). Of course, each of these overlaps with the other and maybe comorbid (appear together) for some people.

There are other non-clinical neurodevelopment differences. These include dyscalculia (relating to numbers), dysgraphia (relating to writing), dyslexia (relating to reading and spelling), Developmental Coordination Disorder (DCD) / Dyspraxia (relating to coordination), and Irlen’s Syndrome (pertaining to visual perception). Specialists, such as occupational therapists, may be involved in their diagnosis – as the case would be for DCD – as these differences are about specific, applied skills.

Acquired neurodiversity is when the onset occurs after an injury, health condition, or other inducing factor (e.g., drug use) is identified. In the case of some inducing factors, it can be challenging to determine whether neurodiversity existed truly. For example, those in response to ADHD may well take more significant risks, which may include, for example, substance misuse. Other factors, such as acquired brain injury (ABI), may also induce characteristics and subsequent diagnosis or identification of a neurodivergence.

Other neurodivergences which are grouped under acquired include psychosis (e.g., schizophrenia, bipolar disorder, and post-partum psychosis) and neurosis (e.g., PTSD, OCD, anxiety, depression, etc.). However, this is a little controversial. For example, as with many neurodevelopmental differences, mental ill-health has also been linked to genetics (though this idea also has its controversies). Again, many neurodevelopmental differences are only revealed once the person has experienced an episode of mental ill-health. For example, unidentified Autism in females can often manifest as extreme anxiety, depression, and similar mental ill-health.

What’s in a name?

We are all different, but to what extent does that difference negatively impact a person’s life? It is a process of elimination and systematic investigation through multi-disciplinary assessment, with the person’s experiences paramount. As psychologists, we are working with the person to understand the impact, the meaning a person makes of their experiences (including any ‘label’), and their responses (actions) against its effects. In other words, a person is always more than the sum of a label. What has happened? What are the effects? What meaning has the person made of their experiences? How does the person choose to respond?

Before I continue, I have a disclosure to make. I am neurodivergent. I will also disclose that I have a blue car. Now, I have a question for you. From what you know of both neurodiversity and blue cars, what are the implications and benefits for me?

You may have a good go at listing many possible examples of neurodivergence, and you might also attempt to consider people you know, articles you have read or documentaries you have watched to fill in the gaps. As for the blue car, well, you may reasonably guess the colour is between green and violet on the colour spectrum and that its shade could be anything from the light teal of a summer’s day sky or as deep as the blue on these pages. Of course, it could be either or neither.

Let’s try again. I know someone who is neurodivergent. They have a diagnosis of Autism. They have a green Mini. Now, you might understand what ‘Autism’ means or at least a social construct of what it might mean. But what does ‘Autism’ mean to the person I know? From this information, we cannot deduce whether this person is verbal or non-verbal, male or female, whether they experience over- or under-sensory sensitivity (or none), and so on.

Some readers may conclude that the person can drive – because they own a green Mini. If they can drive, they must reasonably be able to predict how others might act on the road, read road signs, follow directions, and so on. We might then imagine that this person has a reasonably well-paid job to afford a Mini and that they have either learnt strategies to manage in the workplace or do a job that reduces demand in the areas they find tricky. I will now tell you that this Mini is a toy car. It is part of the person’s intense interests, and everything they own is in racing car green. This new information may change how you think about this person’s experiences, but it still says very little.

A label is meaningful, to a point. But we cannot bring meaning to a name without first understanding the person, their experiences of the impact and their responses to the diagnosis. A person may identify with the label (Autism in this example) fully, partly, or not at all. Most importantly, they will be able to receive support that might make experiencing the world a little easier.

As mentioned towards the start of this piece, it has become more common for people to self-identify as neurodivergent. This is particularly the case in adult populations. Self-identification can be significant to a person. It may lead to a sense of self-understanding, facilitate access to helpful information, and make sense of life’s challenges without a diagnosis. However, self-identification also has its limits. For example, many labels can fall under the neurodivergence umbrella. How does one differentiate between labels? Is differentiation important to the person? How can one be sure that they are receiving the most appropriate support? And what happens if a self-identification is formally challenged, for example, through a disability discrimination or employment tribunal? Whilst self-identification should be respected by others, it brings with it – at best – significant limitations. At worst, it could overlook other, more appropriate diagnoses and be restrictive when seeking support.

Labels: Should they stay, or should they go?

Neurodivergence is, in its simplest form, a difference in how a person experiences the world. At Palmer and Palmer Psychology, we believe that difference should be celebrated. In a world that is often artificial and subject to distortion, the one superpower we all have is our unique self. Yet, we are social beings, and sometimes differences can feel isolating, confusing, and out of step with how we might wish to live life. So, whether to go through an assessment process (or, indeed, self-identify) is a very personal choice.

There are, however, some considerations to keep in mind should you choose to travel this path. Firstly, screeners and checklists are unreliable assessments – they may identify problems where there are none or miss a problem where there is one. While screeners and checklists can provide helpful information, they are often constrained and should not be interpreted in isolation. This is one reason why social media posts, in which creators proclaim you are neurodivergent if you have a combination of – usually vague – symptoms, are so dangerous.

There is no substitute for a high-quality, multi-agency assessment. For example, this is what the NICE Guidelines say in respect of ADHD:

As part of the diagnostic process, include an assessment of the person’s needs, coexisting conditions, social, familial, and educational or occupational circumstances and physical health. For children and young people, there should also be an assessment of their parents’ or carers’ mental health.

NICE Guidelines, 2019: Attention Deficit Hyperactivity Disorder: diagnosis and management [NG87]

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There are broadly two domains to assessments. The first is psycho-social (e.g., developmental history, psychological, adaptive, educational testing, consultations with relevant ‘others’, and social and family mapping). The second is clinical (e.g., physical examination, medical and psychiatric history, assessment of parental/carer mental health diagnoses). Some assessments require both psycho-social and clinical evaluation, while others require one.

For example, a combined psycho-social and clinical assessment is likely to be necessary when exploring differences such as Autism, ADHD, and Foetal Alcohol Syndrome Disorders (FASD). We strongly advocate for a medical professional’s involvement because of the moderate to high risk of other possible explanations. At Palmer and Palmer Psychology, we offer the entire psycho-social evaluation.

Whilst this does not result in a diagnosis of clinical neurodevelopmental differences – such as ADHD and Autism – it will go some way in helping you understand you or your child’s experiences. It can be used to inform possible intervention in school and make a significant contribution towards further, essential, clinical assessment processes or education, health, and care needs assessments, for example. In other cases, only psycho-social assessments might be necessary. For example, this is usually the case for dyslexia, dyscalculia, dysgraphia, and so on.

In all cases, we at Palmer and Palmer Psychology use a combination of dynamic assessment and closed tests. The latter can only be administered by a professional with doctoral-level training in administering and interpreting the test results. These tests include the WISC-V, WAIS-IV, and NEPSY. These tests are ‘closed’ because they cannot be purchased, administered, or interpreted by most other professionals, such as Specialist Teachers. For non-verbal children, young people, and adults, we use the WNV, another type of closed test, and draw on a wide range of play-based assessments. Other techniques such as developmental histories, genograms, projective activities, and many others are used, depending on the circumstances.

The assessments we use and how we work together allow us to make conclusions as to the nature of you or your child’s needs. These recognise the meaning of experiences, their impact, and how these have or could be managed. These should be recognised by you, schools, and other professionals. Further, our reports can be used as contributory evidence when applying for financial support.

Above all – and as we hope this blog has demonstrated – we aim to support our clients through the assessment process and understand the meaning of the outcome. And, coming soon, all of our Tier 3 packages will come with a free subscription to our brand-new member-only platform full of exclusive content and resources. Contact us now to discover how we can work with you.