NEURODIVERSITY HUB
Profiling Tool
Neurodiversity Profiling Tool
Children and young people who are showing signs of neuro-developmental needs can now access a new Neurodiversity Profiling tool which can help identify what support a child or young person may need.
The neurodiversity (ND) profiling tool is the first step in identifying neurodiversity within children and young people aged 0-19. It was initially piloted with 50 families in Portsmouth from March 2021 to April 2022 and has now been approved for use across the city.
It has now been adopted by Cornwall and the Isles of Scilly to support the early identification and early help of children and young people presenting with neurodevelopmental needs.
What is Neurodiversity?
Neurodiversity is the concept that there are a variety of ways that people’s brains process information, function, and present behaviourally. Rather than thinking there is something wrong or problematic when some people don’t operate similarly to others, neurodiversity embraces all differences. The concept of neurodiversity recognises that both brain function and behavioural traits are simply indicators of how diverse the human population is.
Neurotypical is a descriptor that refers to someone who has the brain functions, behaviours, and processing considered standard or typical. Neurotypical people may have no idea they are because the subject has likely never come up for them before. These people usually hit all of their developmental and behavioural milestones at the same times and ages that are considered standard for most people. Once grown, they generally move through life without having to wonder if their brains function in the same way as others do.
Neurodivergence is the term for people whose brains function differently in one or more ways than is considered standard or typical. There are many different ways that neurodivergence manifests, ranging from very mild ways that most people would never notice to more obvious ways that lead to a person behaving differently than is standard in our society. We’ll examine the most common types of neurodivergence and the ways they manifest ahead.
What is the ND Profiling Tool?
The ND profiling tool is a visual document that assesses nine developmental strands of a child or young person aged 0-19. This includes speech and language, energy levels, attention skills, emotion regulation, sensory processing, flexibility and adaptability, and empathy.
It provides a holistic view of a child or young person’s needs and suggests types of strategies that can be put in place to help manage those needs in different areas of a life, such as at home, at their early years setting, school or college, and in the community.
The process of completing the profile is done with the family, and not for or to the family.
What are nature and nurture?
The term nature versus nurture highlights that humans are shaped by biological factors (nature) and environmental factors (nurture). Professionals work with parents and children and young people to discover whether certain behaviours are due to the way a person’s brain is wired (nature) or whether environmental factors play the main role or a mixture of both.
Environmental factors include other people surrounding the person, physical factors like diet and cognitive stimulation from socializing or through play. It can also include trauma, which is described as an adverse childhood experience, like domestic violence, sexual abuse or a serious injury, which a child or young person might experience firsthand or witness We know that these environmental factors have tremendous effects on a human being, especially during the formative years of childhood.
Nature can be described as biological factors, factors that people are born with or develop due to their biology. These include their genetics, the hormones that are secreted in their body and the way their body developed during puberty. Without medical interventions, these nature factors are very difficult to control or change in a person.
For example, why might a child have a high attention span? It could be due to an innate brain wiring (Nature), or it could be related a strong need to get everything right (perfectionism) learnt through the influence of parenting style or experience at school (Nurture).
Professionals investigate the observed behaviours, and use information from the persons past events, family and medical history to understand behaviour. However, the human mind being such a complex phenomenon, makes and it difficult to explain with 100% certainty that factor A along with factor B was the cause of this behaviour. Importantly, things can go wrong, and misinterpretations can happen which can have damaging effects later in life; giving the wrong diagnosis or treating a child as a labelled condition can cause problematic behaviour in the future. Or another way of putting it, mis-labelling a child can cause a self-fulfilling prophecy, where the child who may not have had ADHD will start to behave as if they did. Professionals trained to work with children work closely with parents and think very hard to see if the behaviour that is on display is due to nature or nurture or a combination both. This is so everyone can be clear on right intervention to be made.
Why use the Neurodiversity pathway?
Research tells us that that neurodevelopmental traits are indeed spread along a spectrum of difference in every case. Current diagnostic criteria simply set a somewhat subjective point on the spectrum above which a child can be said to “have” a disorder, and below which it can be said they do not. One example of this is the Childhood Autism Rating Scale (CARS) assessment, where if a child scores above 30 points they will be diagnosed with autism, while if they score below 30 points they will not. This risks misleading people into believing that all who “have” the disorder are the same, and all who do not have the disorder are “normal” which causes confusion. This label of have or have not makes no mention of their social skills, their attention, and cognitive ability, instead it is condensed down into a “yes” or “no” which is not useful information when supporting the person. Pair this with the fact that those who are just below the threshold for a formal diagnosis, will still have needs.
A focus on need
The Neurodiversity pathway wants to shift the culture away from diagnosis and labels into a more needs led approach, including all those who may need support despite their profiling not meeting a diagnostic threshold. This will be achieved by having agreement and understanding on the language used by care givers, health professionals and other professionals.
This is in preparation for when they do have concerns for a child, they will be able to identify where those issues are, and appropriately deal with them in an efficient and timely manner, with resources available to them on demand. It will also help install the idea of a holistic approach (looking at the person as a whole instead of a singular label), as instead of working on the diagnosis of ASD, ADHD or LD the profile will give a wider understanding of the child and their temperament.
This will allow for a more effective support to be created for them, instead of a general plan used on the diagnosis labelling. It is important to note, this profiling tool is not to remove or replace diagnosis that ASDAT or Children Adolescent and Mental Health Services (CAMHS) currently assesses. Rather, it is an additional extra structure that is to be used by professionals, parents and young people which can support and manage the needs of children and young people. This may be sufficient in itself or further assessment may still be required in some circumstances.
Emphasis on Support
The main message is that the profile is looking to set up is a mechanism by which parents can seek assistance and support if they feel their child’s needs are not being met, because the child either “has” or “doesn’t have” a diagnosis. This approach requires a conversation between caregivers and professionals who know the child, to share perspectives and co-produce an understanding of the child’s temperament to “map out” the differences that make this child unique. Since temperament changes gradually over time, the profile can be used to track a young person’s development as it changes over time. This nearly always helps families and young people to see how far they have come in various ways since they were little, and to give some sense of what the future holds.
A Person-Centred Approach
Traditional pathways consist of ‘referral’ for ‘specialist assessment’ leading to a ‘diagnosis’ of a specific ‘disorder’. At the end of the pathway users are sometimes puzzled that there is usually no further clinical input or support for educational adjustment. Likewise, there is an issue once a diagnosis is given; it is rarely personalized to the individual needs of the child or young person. This leads to a less effective support plan. This is where the profiling tool will help. We aim to input the psychoeducation during the first part of the pathway so that throughout, it will help everyone understand individual needs and how best to support them, with or without a diagnosis. At the end of the pathway, parents and professionals supporting the child, young person and their family will know where the child’s key strengths and weaknesses lie and are able to support them as best as they can.
Who is the Neurodiversity pathway/profile for?
It is not necessary or appropriate to screen every child. The profile and pathway will only be used where neurodevelopmental concerns and questions about additional needs arise between parents and professionals that it will be useful for the profiling tool to be used. Parents and carers may raise questions about their child’s development with Health visitors or early years settings, or with their child’s teacher or SENCO. Sometimes it will be the other way around. The profile can be shared with anyone or any organization that the parent or young person chooses, and of course, the child themselves when they become able to understand the idea of their own unique nature.
What does the profiling tool look like?
There are 9 areas of the profile representing areas of neurodiversity. Each profile area involves a discussion between parent or carer and professional and child or young person when they feel ready and able to engage in the process. It may be completed in one session or more likely, take longer. It is a subjective measure, but with views and contributions from parents and carers and one or more professionals, it can result in a rich and holistic picture of the child or young person’s profile. This detailed profile can then be used to identify the needs and support that may be required in different areas of life – home, school, college, community. The process of completing the profile is collaborative and person-centred; it is done with the family and not for or to the family.
Once completed there is a profile on a page which shows strengths and areas that need to be addressed and supported. Whilst this doesn’t necessarily replace a written report, the intention is to provide a way of making it quicker and easier to comprehend. It is accompanied by strategies and support requirements. This profile on a page can be shared with anyone working with the child or young person to help them understand their strength and difficulties and know what needs to be done to support them.
The Nine Neurodiversity Subsections
This Tool divides neurodevelopmental qualities into nine unique subsections. Each of these subsections has been extensively reviewed and evaluated by clinicians, specialists in that area, care givers and past service users, to ensure adequate descriptors and language was used to describe the observable behaviour, so it is accessible to everyone who may read it.
These nine subsections are:
1) Speech and Language
2) Energy Levels
3) Attention and Impulse Control
4) Emotional Regulation
5) Motor Skills
6) Sensory
7) Flexibility and Adaptability
8) Systemizing and Empathizing
9) Cognitive Ability
For professionals who wish to train in the tool to support a family:
To book into available sessions:
Neurodiversity Profiling Tool Training – EventBrite Booking Page
There is also an interest register here:
https://www.kernowhealthcic.org.uk/tbccourses/cornwalls-neurodiversity-nd-profiling-tool-training-interest-register/