Supporting neurodivergent people and their families

Key concepts

When trying to understand and learn more about neurodivergent people and their families, there are some common terms you might come across.

Neurodiversity, neurodivergence, and neurodevelopmental disorders

Neurodiversity refers to the variation in how humans think, feel, and experience the world. The term ‘neurodiverse’ describes the variation that exists among people, rather than describing any individual experience (Walker, 2021). We use the term ‘neurodivergence’ to describe the individual experience of having a brain that works differently from that of most people. Types of neurodivergence include autism, attention deficit hyperactivity disorder (ADHD), dyspraxia, and learning disabilities. People sometimes differentiate between learning difficulties, that affect specific functions, and learning disabilities, which affect intellectual ability (Mencap, 2024). Neurotypical is the opposite of neurodivergent. Sometimes, some types of neurodivergence are described as neurodevelopmental disorders, especially in medical contexts. In this evidence summary, we use the term neurodivergence instead of neurodevelopmental disorder to emphasise the need for non-stigmatising language.

Autism

Autism is a form of neurodivergence that’s often defined as a disorder. It's often described as encompassing difficulty communicating, understanding how other people feel, dealing with change, and coping with sensory input, such as loud noises or bright lights (NHS, 2024). As our understanding of autism expands, definitions have begun to focus on the experiences of autistic people, rather than on deficits other people might identify. Walker (2021) describes autism as a neurological difference where people have a higher level of synaptic connectivity and responsiveness. This means their brains register more information and they experience the world more intensely. Autism is often referred to as a spectrum. This means the experiences of autistic people vary greatly, but it doesn’t mean that people can be more or less autistic than each other.

Attention deficit hyperactivity disorder (ADHD)

ADHD is often understood as a condition that causes people to struggle with organisation and attention. But Bertilsdotter Rosqvist et al. (2023) argue that people with ADHD may not have a deficit of attention or less ability to focus than others. The intensity with which they focus just varies much more. Sometimes they’re much less focused than people who don’t have ADHD, but sometimes they’re much more focused. In Bertilsdotter Rosqvist et al.’s (2023) study, researchers analysed their own histories and experiences of having ADHD. They all reported sometimes experiencing some form of hyperfocus or ‘deep flow’ – a form of intense concentration in which they felt their work flowed easily – while struggling with attention at other times. Most of the people in the study experienced these flow states as intensely pleasurable and productive at least some of the time. They also found focusing more difficult when they weren’t interested in a topic or task (Bertilsdotter Rosqvist et al., 2023).

Other forms of neurodivergence

There’s not a definitive list of conditions and differences that fall under the neurodiversity umbrella. There are many different reasons why someone’s brain may function differently from others. Other neurological differences include dyslexia, dyscalculia, dyspraxia, obsessive compulsive disorder (OCD), post traumatic stress disorder (PTSD), acquired brain injury (ABI), and learning disabilities.

What is the neurodiversity paradigm?

There are many areas of disagreement and discussion when it comes to neurodiversity. The way we understand people whose brains work differently from the norm has changed significantly in the last few decades. With this change has come a shift in how we understand what support works best for people. One important change is the rise of the neurodiversity paradigm. A paradigm is a set of ideas, values and perspectives that help us understand something and work out what kind of support is appropriate in a situation. When people say there’s been a ‘paradigm shift’, they mean that the way we understand something is changing in a fundamental way. There’s been a paradigm shift away from understanding neurodivergent conditions as something that’s wrong with the individual and towards understanding neurodiversity as something that’s natural and normal.

The view that neurodiversity is a deficit is rooted in the medical model of disability (Llewellyn and Hogan, 2000). In this view, neurodivergent people struggle with their environment because their brains function less well than neurotypical brains. This view of neurodiversity causes us to focus on helping neurodivergent people to ‘heal’ their neurodivergences and learn how to act more like a neurotypical person would. This is often done through certain types of behavioural therapy, which teach people to act in a way that’s deemed ‘appropriate’ (Ne’eman, 2021; Pellicano and den Houting, 2021). In contrast to this, proponents of the neurodiversity paradigm argue that neurodivergent people struggle because the world is inaccessible to them, rather than because there’s something wrong with them. It’s harmful to expect neurodivergent people to behave in a way that’s unnatural to them or to cope in environments that cause them sensory distress (Walker 2021, Chapman, 2023).

Research looking at how neurodivergent conditions can be cured or eradicated, such as with certain behavioural measures, is still being produced today (Leaf et al., 2021). Behavioural measures are interventions that focus on teaching and enforcing wanted behaviours through rewards and punishments. Some behavioural measures focus on making people show less visible neurodivergent behaviours – such as differences in eye contact or social skills – in the short term. But some people following the neurodiversity paradigm suggest that these kind of outcomes are harmful. They propose that young neurodivergent people should be able to access support that’s based on enabling them to live a good life according to what’s important to them, rather than according to neurotypical standards of behaviour (Chapman, 2023; Walker, 2021).

This can sometimes include interventions and support that enable neurodivergent people to manage conditions on an individual level. For example, many people with ADHD or OCD find medication helpful. Similarly, there’s evidence that some behavioural measures, such as Positive Behavioural Support, might be helpful in supporting people to manage destructive behaviours. The Welsh Government’s Reducing Restrictive Practices Framework (Welsh Government, 2022) proposes that Positive Behavioural Support can also reduce the use of restraint within health and care settings. Proponents of this approach emphasise that, unlike some other behavioural measures, their goal is not to force behaviour change on people (Jones, 2022; Bild 2022). Instead, these approaches focus on improving well-being and giving neurodivergent people control over their own lives.

What research says about supporting neurodivergent families

The move towards the neurodiversity paradigm has been coupled with an increase in research on how neurodivergent people can be supported to navigate the different challenges they might face. In this section, we look at what research says about the importance of strengths-based practices, access to diagnostic services, and creating accessible environments.

Strengths-based approaches to neurodiversity

Neurodivergent people may struggle with things that they believe other people find easy and this can impact upon their well-being. A strengths-based approach can support neurodivergent people to gain confidence and improved well-being by focusing on building their strengths and resources instead of focusing on their deficits. Research indicates that strengths-based approaches can lead people to experience more hope and belief in their capabilities (Devaney et al., 2023; Park and Peterson, 2006). We explore strengths-based practices in more detail in our evidence summary on building trust with marginalised families (Krause et al., 2024).

Neurodivergent people may have negative past experiences of support that wasn’t strengths-based or they may feel they’ve been measured against unhelpful standards. For example, Rappolt-Schlichtmann et al.’s (2018) study involved offering dyslexic students more flexibility around the format of learning materials and how they accessed them. They found that, when offered these choices, students were able to navigate more complex material and their engagement rose significantly. Rappolt-Schlichtmann et al. (2018) argue that the students’ negative past experiences caused them to have negative emotions regarding activities that included reading. They had low motivation to engage with tasks that involved reading, even when the topic was of interest. The need to read was therefore a barrier to learning. When students were offered more choice and autonomy, they were able to access and process information without feeling demoralised. Students in the study were given the choice of receiving information via video, audio or graphic/picture content. These types of content didn’t eliminate the need for students to read, but they made it much easier. The researchers found that, with these adjustments, dyslexic students weren’t just able to learn the content better, their reading and writing skills also developed (Rappolt-Schlichtmann et al., 2018).

In a different study (Lee et al., 2020) researchers did a survey with 52 parents of young autistic people who were involved in a strengths-based science programme. Autistic people, like many other neurodivergent people, experience strong interests in specific topics which are referred to as “special interests”. The programme allowed the young people to develop their special interest in an accessible way. Parents involved in the study reported that their children not only developed skills in the area they were learning about, they also credited the programme with improving their children’s self-esteem, well-being and sense of belonging.

The neurodiversity paradigm offers us important insight into how best to support people who’ve traditionally been seen as having disorders or deficits. By acknowledging and supporting people’s strengths, effective support can help people develop their potential without minimising any of the difficulties they face.

The importance of diagnosis

In Heady et al.’s (2022) study of social workers supporting children and young people in care, diagnosis came up as an important part of helping young people to access support. However, it can be hard for children and young people to access specialist support services. Rappolt-Schlichtmann et al. (2018) noted that neurodivergent children and young people also have a high likelihood of struggling with their mental health, which can make putting the right support in place challenging.

A Children’s Commissioner for Wales (2023) report on neurodiversity showed that waiting times for diagnosis of neurodivergent conditions like autism and ADHD were a significant barrier to accessing support for many neurodivergent young people in Wales. They also found that neurodivergent people who struggled with their mental health had difficulty navigating health and social care services. When this information was gathered in 2022, there were 9014 children on the waiting list for an autism assessment in Wales. Of these, 3331 had been waiting for over a year (Children’s Commissioner for Wales, 2023). The Welsh Youth Parliament has also highlighted young people’s difficulties with getting support for mental health problems (Welsh Youth Parliament, Mental Health and Well-being Committee 2022) and individual members have reported the specific difficulties that neurodivergent and disabled young people have in getting appropriate support (Skyrme, 2023). These reports offer an important insight into the lived experience of young people in Wales, but we need more research to understand how people with more complex needs can be supported.

People seeking a diagnosis face long waiting lists and other difficulties. The Children’s Commissioner for Wales’s (2023) report on neurodiversity called for Welsh Government to make sure waiting lists for formal diagnoses don’t stand in the way of children getting support. It proposed that there should be a “no wrong door” approach, where all services deliver support in a way that accommodates neurodiversity, regardless of whether or not people have received a formal diagnosis.

It’s also important to make sure support is given to children and families during the diagnostic process. Brown et al. (2021) argue that the way professionals talk to caregivers of autistic children during and after the diagnostic process can strongly influence the way they understand their child’s diagnosis. They note that some parents feel intense negative emotions, including grief, when they learn their child is autistic. They argue that the way autism is portrayed in the media and by professionals often focuses on deficits and the hardships faced by neurodivergent people. Adopting a strengths-based approach helps parents and carers access information and support that allows them to process the diagnosis in a more constructive way.

Making environments accessible

Even when neurodivergent people have been able to shape their everyday lives to accommodate their needs, they can struggle when things change or when they have to get used to new environments. Some particularly difficult situations can arise when neurodivergent people are placed in environments that cause distress through sensory overload (Care Quality Commission, 2020).

Williams et al. (2021) developed a list of recommendations for meeting the sensory needs of autistic children and young people staying on Child and Adolescent Mental Health Services (CAMHS) wards in England. The recommendations from this report were developed by autistic people aged 16 to 25 who had stayed on a CAMHS ward, as well as academics, advocates and others with experience of working with autistic young people. Here, we’ve adapted Williams et al.’s (2021) recommendations for creating a sensory friendly environment so that they can be used by anyone working with neurodivergent people:

• create a predictable environment for example, share what will happen and when, keep to timetables, and let people know when plans change
• involve autistic people in a meaningful way when reviewing the sensory environment
• make sure all staff have training developed and delivered by autistic people and allies that understand autism and sensory needs
• assess everyone’s sensory needs to consider how they’ll be accommodated and supported in care plans, for example, creating quiet environments with appropriate lighting or providing calming activities
• personalise risk management and decision making and support people to have choice and control
• take people’s different communication needs, or time needed for processing information, into account
• swap audible alarms for ‘silent’ alarms, reduce noise and echo, and give people unlimited access to quiet and outdoor spaces
• change all fluorescent lighting for alternatives
• consider the impact of smells, touch, and texture.

This list isn’t extensive and it’s always a good idea to talk to neurodivergent people about what would make things easier for them. It’s important to keep in mind that people experience the world around them in very different ways and neurodivergent people may struggle with things that are barely perceptible to others, such as low background noises, temperatures or room layouts.

Conclusion

This evidence summary presents research on how social care workers can improve the well-being of neurodivergent people and their families. The neurodiversity paradigm can help social care workers to build on neurodivergent people’s strengths while also making sure they get the right support. This involves understanding that neurodivergent people might struggle because the world around them isn’t accessible, rather than because there’s something wrong with them. Supporting the individual well-being of neurodivergent people and their families can involve drawing on strengths-based approaches, supporting them with diagnosis, and considering accessibility in their environment.