Neurodivergent children and young people need greater understanding if they are to flourish. Journalist Anna Scott reports.
Just one autistic pupil in four (26%) feels happy at school, more than 150,000 people are awaiting an autism assessment in the UK, and 70% of autistic people experience mental health problems (National Autistic Society (NAS), 2024). And these statistics only refer to autism. The term neurodivergence also includes conditions such as attention deficit hyperactivity disorder (ADHD), dyslexia and dyspraxia (see Definitions, below). It’s estimated that about one person in seven in the UK is neurodivergent (The Donaldson Trust, 2024). This means that their brain functions, learns and processes information differently to a neurotypical person. And yet neurodivergent children and young people face a range of significant issues in society.
‘There is a myriad of issues facing autistic children and young people, which is compromising their rights to an inclusive education,’ says Tim Nicholls, head of influencing and research at the NAS. ‘At every level of the system – from identification and assessment to educational provision and in the transition to adult life – parents and young people face significant barriers in accessing the right support at the right time.’
Worryingly, this includes autistic young people who are detained in mental health hospitals. ‘When it comes to under-18s, there are 200 children and young people in inpatient units [in England] that are autistic or have a learning disability. Of these, 95% are autistic.’ Tim adds: ‘It is widely recognised that for most autistic people, care in an inpatient unit is rarely helpful – in fact, it can be deeply damaging.’
Neurodivergent children and young people generally face a lack of understanding of their needs and unique abilities in a world ‘largely set up to cater’ for neurotypical people, according to Dr Jason Lang, a clinical senior lecturer in mental health and wellbeing at the University of Glasgow.
SOCIETAL CHALLENGES
‘Neurodivergent people generally think, see and experience the world differently, and many may also have differences in their social communication styles,’ says Dr Lang. ‘This may make it difficult for them to work in a neurotypical environment. Perhaps more importantly, this means that neurotypical people may not understand neurodivergent behaviours or ways of being.’
Traditional exams are an example, explains Dr Lang: ‘To succeed in school one largely needs to pass written in-person examinations – often lasting several hours – which can be hard for someone with an ADHD neurotype to complete,’ he notes ‘That doesn’t mean that people with ADHD neurotypes can’t learn as well as anyone else, just that they may benefit from a different approach to sitting in one space focusing on one question for several hours at a time.’
At every level of
the system, parents
and young people face
significant barriers
in accessing the
right support at
the right time
There is also often misunderstanding on the sensory issues neurodivergent people can experience. ‘Sensory differences are much more complex than something being “too bright” or “too loud”,’ says Christina Beaumont, children and young person’s project co-ordinator at The Brain Charity. ‘It could be a type of light that a child is hypersensitive to. Fluorescent lights flick on and off 50 times a second and if you are hypersensitive to it, your eyes can detect that flickering. Imagine being in a space where the lights were constantly flickering on and off.’
Temperature, touch and sound can all be experienced differently. ‘Reflective surfaces can be a real problem because of being able to distinguish between foreground and background noise,’ Christina adds. Children may be experiencing sensory distress that is incorrectly labelled as ‘challenging behaviour’, she says. ‘Getting the environment right is massively important.’
Neurodivergent children
and young people
generally face a lack of
understanding of their
needs and unique abilities
in a world ‘largely
set up to cater’ for
neurotypical people
Neurodivergent children and young people can have difficulties in coping with social situations such as birthday parties and school break times, explains Tracey Kenyon. A former nurse consultant and specialist health visitor working with children with disabilities, Tracey is now a specialist adviser with the charity Nerve Tumours UK.
‘These days there is such pressure for children to be sociable from a very early age,’ says Tracey, who is a member of the CPHVA Executive. I’ve kept in touch with some families who found lockdown a relief because they didn’t have to go to soft play, for example. But for parents who [want to yet] may feel unable to socialise with their peer group [because their children don’t enjoy it] this has huge mental health implications [for the adults].’
AVOIDING ASSUMPTIONS
We should avoid making assumptions when supporting neurodiverse children, according to Jessica Streeting, a nurse consultant for public health with Central London Community Healthcare NHS Trust. ‘For example, not all dyslexic children will struggle with reading; they may be slower to learn to read than their peers, but their ongoing challenges may be more generally around organisation, thought process and short-term memory,’ she adds.
There can be huge differences in how boys and girls present with neurodiversity. An example is the issue of underdiagnosis in neurodivergent girls caused by a phenomenon known as ‘masking’. ‘Lots of girls are able to present as neurotypical,’ Christina says. ‘They are very sensitive to how they might be perceived by others. The problem with masking is it takes a huge personal toll.’
| DEFINITIONS |
| Humanity is neurodiverse. ‘That means that no two people have the same personality, neuro-cognitive (thinking), and functional styles, otherwise known as their neurotype,’ says Dr Jason Lang. |
| ‘However, some people are neurodivergent. That means that they have differences in, for example, their cognitive patterns, social communication style or sensory processing style which is significantly different from average or more typical neurotypes,’ he adds. |
| Dr Fiona Gullon-Scott points out that neurodivergence is ‘not worse than neurotypicality’. ‘But because fewer people are neurodivergent most systems, environments, communication method, social expectations and so on are ones which fit with the neurotypical and do not always suit the neurodivergent person.’ |
| Fiona adds: ‘Neurodivergence as a concept includes autism, ADHD, dyslexia, dyspraxia, dyscalculia, Tourette Syndrome and similar neurodevelopmental presentations, and there is a lot of overlap between each of them. |
It’s also important to remember that conditions can overlap. Dr Lang recently led a study which found that individuals often have more than one neurodivergent condition (Lang et al, 2024). More than 76% of children diagnosed with autism in Scotland also had traits of other neurodivergent neurotypes, including ADHD, and learning and motor differences. Services are moving away from making single neurotype assessments to a more holistic model, in which all possible overlapping neurotypes are explored, the study found.
EARLY IDENTIFICATION MATTERS
The early identification of neurodivergence is crucial for parents, whose child may be having what appears to be episodes of challenging behaviour, sleep disturbance and eating difficulties. However, they are more likely to face a long waiting list for a diagnosis. National Institute for Health and Care Excellence (2011) guidance states that no-one should wait longer than three months for an initial appointment after being referred for an autism assessment. ‘But data shows that the vast majority of people (85%) (134,815 people out of nearly 160,000) have been waiting longer,’ says Tim from the NAS.
‘An autism diagnosis is vital to getting the right help and support, and it can be life changing. We often hear from people who can’t get support without a diagnosis,’ Tim adds. A diagnosis can also help people who are neurodivergent understand why they feel differently – waiting for one can have a big impact on their mental health and how they experience the education system.
Dr Fiona Gullon-Scott is a senior lecturer in clinical psychology and director of the Neurodevelopmental Assessment Service at the University of Newcastle. She refers to a meme that explains the importance of a diagnosis for an autistic person. ‘Because there is comfort in knowing you are a normal zebra, not a strange horse,’ it reads. ‘Because you can’t find a community with other zebras if you don’t know you belong. And because it is impossible for a zebra to be happy or healthy spending its life thinking it is a failed horse,’ (@OMGImAutisticAF, 2022).
Fiona adds: ‘If we can identify neurodivergent presentations early, that brings with it access to the right community, support, and understanding. We can then work with that person, and their family, to help value and empower their strengths, understand why some things may prove more challenging for them, enable access to the right kind of support for their way of processing the world around them, and – hopefully – help them delight in being a zebra. And, for example, reduce the risk for mental health difficulties that can so often stem from believing one is “a failed horse”.’
LEADING BY NEED
And yet there is greater complexity than just waiting for and receiving a diagnosis. ‘I think we’ve been very diagnosis-led, historically,’ says Melissa Watkin, the designated clinical officer and strategic health lead for SEND [special educational needs and disabilities] at Kirklees Health and Care Partnership, NHS West Yorkshire Integrated Care Board. ‘And because of the complexity of the world we currently live in, we need to start diverging away from being diagnosis-led and be more need-led,’ Melissa suggests.
She adds: ‘A lot of presentation of neurodiversity can be easily confused with behaviours linked to trauma or adverse childhood experiences. It’s a fine line between what is neurodivergence and what is because of complex family systems, for example.’
Neurodivergent
people do not
‘grow out’ of their
condition, but helping
them to develop
support strategies
understanding
and building self-
confidence can make
all the difference
Behavioural support is crucial. Specialist Tracey’s work has involved training and supporting HVs in the early identification of neurodivergence. ‘It’s really important they’re aware of the signs of any neurodiversity. But that training needs to be delivered in a multidisciplinary way,’ she says. ‘They need to be supported by, for example, speech therapists, who are so valuable, but their caseload pressure mean they are often not able to prioritise [activities] such [as] education and training.’
In the absence of a diagnosis, support from CPs is critical, nurse consultant Jessica explains. ‘It’s important that the family’s experience is validated, so signposting them to local forums and online information or support groups can help families connect with others going through similar experiences.
‘When supporting with referrals to further support services, it’s important to be objective. Listen actively to the child, describe how they present, and record your own professional opinion on the implications of this. You are the child’s advocate, so represent their voice and empower them,’ Jessica adds.
HOW YOU CAN HELP
Health visiting and school health practitioners can also offer support with day-to-day parenting issues such as sleep, children’s emotional wellbeing, toileting and behaviour management, according to Amber Bond, head of the Kent School Health Service. ‘[In Kent] practitioners will tailor the support around the needs of the family and child,’ Amber explains. ‘That could include more time or specific resources that might support a child with their unique needs, including the Kent “local offer” and online parenting courses. Referrals can be made to health or education specialists if a child needs further support.’
| RESOURCES |
| A guide to neurodiversity in the early years |
| A teenager’s guide to ADHD |
| ADHD Services for families |
| Supporting topics |
| Working to achieve a dyslexia- friendly society for all, plus information on dyspraxia and dyscalculia |
| The 2024 World Autism Acceptance Week, the NAS’s fundraising campaign to ‘help create a society that works for autistic people’, runs from 2 to 8 April |
She explains: ‘The School Health Service and Community Paediatrics Service work with schools to implement a whole school approach to neurodiversity. This means viewing things from the child’s perspective, [while] understanding and accepting that we all think differently and learn in different ways.’ Amber adds: ‘We can support schools to understand how to implement reasonable adjustments and the approaches, strategies and adaptations needed to make school an inclusive learning environment for all children.’
A holistic approach with a strong focus on listening is also crucial. ‘Listening to parents is one of the biggest things you can do,’ Tracey says. And Melissa adds: ‘The best advice I could offer school nurses is to take the time to get to know the person.’
Government focus and action is of course needed to improve life for neurodivergent children and young people, for instance in tackling long waiting lists. In addition, the NAS says there is an urgent need for mental health law reform to stop under-18-year-olds with autism being placed in mental health hospitals.
Jessica saw how her son’s life was transformed after he was diagnosed and received support and understanding. ‘He was very slow to learn to read and is now a secondary school English teacher with a deep love of learning,’ she adds. ‘Neurodivergent people do not “grow out” of their condition, but helping them to develop support strategies, understanding and building self-confidence can make all the difference,’ Jessica says.
HOW MANY PEOPLE ARE NEURODIVERGENT IN THE UK?
| An estimated 1 in 7 people is neurodivergent |
Trust, 2024
| More then 1 person in 100 is thought to be autistic |
| About 694,000 children are thought to have ADHD |
| 1 person in 10 is thought to have dyslexia |
Association, 2024
| 1 school-aged child in 20 is affected by dyspraxia |
Foundation,
2024
‘THESE YOUNG PEOPLE NEED SOMEONE TO LISTEN AND TALK TO’
Melissa Watkin, SEND lead, has worked on a one-to-one basis with many neurodivergent children and young people, including a girl who was avoiding school, had become very socially isolated and stopped communicating with her friends, and was self-harming.
‘She kind of locked herself away,’ says Melissa. ‘She got behind academically and her parents identified that her appetite Had significantly decreased, and she had lost a lot of weight. She wasn’t accessing any mental health support at the time either.’
After she had been referred to the dietitian and school nurse, the girl then came under Melissa’s care. ‘I met her family and got a full history of their concerns, and I worked on a one-to-one basis with her for about six months. During that time, my focus was on building a relationship. We would go for walks and for coffees. I would just give her an opportunity to actually open up and speak about how she was feeling.’
Melissa also referred the girl to child and adolescent mental health services (CAMHS) for some specific mental health support and helped her gain access to home learning when she was really struggling. Meanwhile, Melissa continued to consider how they could reintegrate her back into school.
‘I got her referred on to the neurodiversity team because I had suspicions she had autism spectrum disorder. After about six months, once all the services had picked her up, she was diagnosed,’ Melissa says. ‘Because we got a diagnosis, she was accessing the right level of mental health support from the right team at CAMHS.’
Melissa arranged with social services for the young person to receive support from Early Help, which aims to help children and young people up to the age of 19. The service provides the right support from a range of agencies at the right time. ‘The young person, their family, and professionals – such as a dietitian, the school, HVs, SNs – could get together and talk about how things Were progressing and what needed to be done.
‘After 12 months, we got her under the care of our team, we got the mental health support, we got the diagnosis, we got her back in school and now she is thriving at college.’
Going through puberty, living in our complex world, and trying to unpick why you feel different to your peers is extremely complex, Melissa says. ‘Generally, these young people need somebody to listen and talk to who isn’t in education and who isn’t part of their family.’
WHAT’S YOUR EXPERIENCE?
How do you help neurodivergent children and young people, especially when they haven’t yet received a diagnosis? How else do you think society could help young people to flourish? Get in touch with editor Aviva Attias:
aviva@communitypractitioner.co.uk
REFERENCES
ADHD UK. (2024) What is ADHD. See: bit.ly/3HYubTI (accessed 12 February 2024).
British Dyslexia Association. (2024) About dyslexia. See: bit.ly/48anB77 (accessed 12 February 2024).
Dyspraxia Foundation. (2024) What is dyspraxia? See: bit.ly/48eZlAI (accessed 12 February 2024).
Lang J, Wylie G, Haig C, Gillberg C et al. (2024) Towards system redesign: An exploratory analysis of neurodivergent traits in a childhood population referred for autism assessment. See: bit.ly/42EjkYL (accessed 12 February 2024).
National Autistic Society. (2024) What is autism? See: bit.ly/3SFcRYZ (accessed 12 February 2024).
National Institute for Health and Care Excellence. (2011) Autism spectrum disorder in under 19s: recognition, referral and diagnosis. See: nice.org.uk/guidance/cg128 (accessed 12 February 2024).
@OMGImAutisticAF. (2022) Instagram post. See: bit.ly/3SX4cm3 (accessed 12 February 2024).
The Donaldson Trust. (2024) Neurodiversity. See: bit.ly/3uwaYWe (accessed 12 February 2024).
Image | Shutterstock
