Learning disability: beyond the cognitive

The neurodiversity movement has helped to destigmatise neurodivergence and encourage acceptance and celebration of those who process the world in a non-neurotypical way. However, there seems to be a lack of a clear position about how people with a learning disability (LD; known as intellectual disability in diagnostic manuals and UK research) fit within and benefit from being included within a neurodiversity framework.

In this article, I reflect on the importance of the inclusion of people with LD in the neurodiversity movement from my perspective as a neurocognitive and behavioural researcher interested in supporting the social and communication functioning of people with genetic syndromes and LD. Many of the ideas I outline are explored in more depth in a recent chapter by myself and my colleagues (Ellis et al., 2023); below I consider these points more explicitly in the context of neurodiversity.

Masking diversity

My understanding is that there are two key aspects that are generally agreed upon by the neurodiversity movement. The first is that the movement advocates that neurocognitive and behavioural differences observed in neurodivergent people are not something to be pathologised or 'fixed' and instead reflect the natural variation and spectrum of human diversity.

The second is that whilst neurodivergent people do not need to be 'fixed', the movement nevertheless recognises that they are often 'disabled' by their social environment. Put simply, neurodivergent people are not disordered but different, and instead, it is the barriers in a person's environment that determine the extent of disability that someone experiences.

Tension seems to have arisen concerning how people with an LD fit within and benefit from this framework. Some have argued that people with LD are a group of individuals a neurodiversity framework may not fit as well for, perhaps because of an idea that severe difficulties with learning and communication reflect 'disorder' rather than 'neurodiversity' as conceptualised within the social model of disability.

We should of course strive to support and develop learning and communication to support a person to express their needs and wants and facilitate participation in their community – this is true regardless of whether someone does or does not have an LD. However, this view arguably reflects an oversimplified characterisation of people with LD.

People with LD are an incredibly diverse group, each with their own strengths and challenges that, within current normative social environments, may support, or impede their well-being and participation within their community. However, this diversity is often not recognised in much of the research with people with an LD beyond distinguishing individuals based on their level of ability (i.e. whether a person has a mild, moderate, or severe level of LD). Whilst this information is important for knowing how to support an individual, a sole focus on a person's LD masks this wide range of diversity.

Within the research community, such oversimplification is likely to reflect the practical challenges of working within this field; namely a lack of dedicated research funding, leading to restricted sample sizes, and a lack of development and availability of tools needed to capture important individual differences reliably and accurately. Yet this approach, whilst likely unintentional, risks translation into a day-to-day unidimensional view of people with LD that is based solely on their broad level of cognitive ability.

To overcome these barriers, the neurodiversity framework may be exactly what is needed to push the research agenda and associated funding for work that adequately represents and understands the variety of neurocognitive and behavioural styles in people with LD. To achieve this, the neurodiversity movement may support a shift in society in two ways.

Firstly, from a mind-frame that focuses only on an individual's challenges, to instead identifying, emphasising, and utilising their strengths. Secondly, from a position which considers neurotypical ways of communication, interacting and processing the world as the only 'right' way of doing things to a mindset that is open and flexible to alternative and inclusive social and communication styles that develop atypically.

Capitalising on strengths and interests

Whilst the broader LD literature tends to lack acknowledgement of diversity in this group, research in people with genetic syndromes associated with LD has highlighted the benefits of capitalising on an individual's strengths and interests. This work has demonstrated the vast diversity of social and communication strengths, challenges and styles that are characteristic of a syndrome yet independent of a person's general cognitive ability; two people with the same level of LD may show very different social and communication preferences and styles.

Research has highlighted notable social strengths even in those with severe to profound levels of LD and those with no speech, such as those with Angelman syndrome (AS). Specifically, people with AS often show high levels of social motivation and social enjoyment relative to even those with mild to moderate levels of LD (Moss et al., 2016). These strengths are characterised specifically by high levels of laughing and smiling that greatly encourage others to respond in kind in those with AS – it is extremely difficult not to respond and many will leave with aching cheeks from smiling so much!

People with Cornelia de Lange syndrome (CdLS), a group characterised by a breadth of cognitive ability (profound to mild ID), show a contrasting social style, with low levels of observed sociability, characterised by situational mutism, and high rates of social anxiety and withdrawal. These examples show that cognitive ability does not solely dictate the degree to or way in which someone may or may not participate in the social world.

At a simple level, understanding a person's individual social advantages and interests, rather than solely focusing on their challenges, may help identify environments that are supportive for a person with LD. For example, single-case experimental designs have demonstrated that increasing social contact can support and encourage learning in children with AS (Heald et al., 2021). In comparison, we may be cautious about causing unintended harm and stress for a person by assuming the benefits of social contact for those who have a greater cognitive ability but show social withdrawal and anxiety, such as those with CdLS.

However, oversimplified characterisations of these profiles (e.g. someone who finds social interaction enjoyable versus those who find it aversive) risk overlooking important nuances that help identify the barriers that uniquely prevent someone from interacting with others. For example, whereas people with fragile X syndrome show heightened social anxiety across a range of social situations, people with CdLS only show heightened social anxiety during unstructured social interactions that require them to generate speech, such as during a back-and-forth conversation (Crawford et al., 2020).

Social withdrawal in those specifically with CdLS may therefore not reflect a lack of social motivation, but rather anxiety driven by speech difficulties. People with CdLS have developed adaptive strategies to communicate with others via greater use of gestures relative to their neurotypical peers and other people with genetic syndromes perhaps because of their social interest and in spite of their speech difficulties.

Importantly, we can consider these findings in the context of the social model of disability, which highlights how variation in someone's environment can support or restrict those with non-neurotypical communication styles. It's possible that the high levels of day-to-day social withdrawal and anxiety reported in those with CdLS may not emerge if normative social environments were more accommodating, flexible, and responsive to non-verbal forms of social communication.

What are we missing?

The examples above highlight the need to challenge neuronormative ideas that neurotypical ways of communicating and interacting are the only 'right' way. The consequence otherwise is the exclusion of those with LD who want to engage with others but are restricted by normative social environments. As researchers, we inadvertently promote this thinking via our reliance on measures used to assess a person with LDs social and/or communication abilities, which are based on neurotypical norms.

For example, the most used tools to evaluate communication functioning in people with LD typically consist of a range of standardised measures (e.g. cognitive and functional measures) that prioritise speech, with a limited range of items that assess non-verbal communication skills as these are used by neurotypical children within the first year of life. However, we miss a wealth of information about someone's unique non-verbal communicative potential and strengths, that can be built upon and developed.

These alternative communication strategies are not used just by those with severe to profound ID (e.g., those with AS who use little-to-no speech), but also those who do have speech but experience articulation difficulties (e.g. those with Down syndrome) or anxiety around speaking (e.g., those with CdLS).

Greater acceptance and understanding of alternative communication styles supports individuals to share what is important to them and is also critical to upholding the neurodiversity movement's commitment to include the voices of all neurodivergent people. Including these voices is vital in battling false stereotyped views of what is and isn't important or experienced by a person with LD; for example, historically people with LD were wrongly assumed to not be interested in building meaningful social relationships.

Likewise, our assumptions about what we think is important to people with LD may lead to well-meaning but misguided attempts at support. Reuzel and colleagues (2013) asked both people with LD (clients) and their staff-carers to rate the quality of their social interactions with one another. Whereas staff-carers rated interactions higher when the client led the conversation and spoke more than the staff-carer during the interaction, clients rated the interactions more highly when both partners' speech and eye gaze were more synchronised with one another.

The authors suggest that findings may reflect a well-meaning attempt by staff to support their clients in having a voice at the expense of a more nuanced verbal and non-verbal reciprocal interaction that clients were sensitive to. We see wide variation in social and communications skills and preferences across people with genetic syndromes – so it's important to recognise that there is likely also wide variation across the LD population more broadly. This diversity makes it all the more vital to be truly inquisitive about the perspectives and experiences of people with LD and their social world.

I make the point above with the full awareness that I am not a person with an LD and the arguments I've made above are very much reflections from a researcher's point of view and understanding. Collectively, there needs to be greater inclusion and collaboration of those with LD in both research and within the neurodiversity movement.

Nevertheless, I hope that reflection of these points highlights how the neurodiversity movement may be critical in preventing an ableist, stereotypical and nihilistic view that limits people with LD simply within their level of cognitive ability. The work from the genetic syndrome literature is important for capturing and understanding neurodiversity in the LD population; a large proportion of individuals with an LD have a genetic syndrome and the rate will likely increase as access to genetic testing becomes more common.

However, the critical point is that the lessons learned from this work extend to the broader population of LD, providing evidence and support for neurodiversity as a framework to encourage a 'shift of attitudes' towards a recognition of neurodiversity in those with LD that is not simply defined by their level of cognitive ability.

Dr Katherine Ellis (she/her) is an Associate Lecturer at UCL and Research Fellow at the University of Surrey. She researches how differences in social cognitive development, as well as sensory processing, may contribute to the social and emotional wellbeing in people with genetic syndromes, intellectual disability and/or autism.

Key sources

Ellis, K., Pearson, E., Murray, C. et al. (2023). The importance of refined assessment of communication and social functioning in people with intellectual disabilities. International Review of Research in Developmental Disabilities (Vol. 65: Social and Communication Functioning in Populations with Intellectual Disability: Rethinking Measurement).
Crawford, H., Moss, J., Groves, L., et al. (2020). A behavioural assessment of social anxiety and social motivation in fragile X, Cornelia de Lange and Rubinstein-Taybi syndromes. Journal of Autism and Developmental Disorders, 50, 127-144.
Heald, M., Adams, D., Walls, E., & Oliver, C. (2021). Refining the behavioral phenotype of Angelman syndrome: Examining differences in motivation for social contact between genetic subgroups. Frontiers in Behavioral Neuroscience, 15, 618271.
Moss, J., Nelson, L., Powis, L., et al. (2016). A comparative study of sociability in Angelman, Cornelia de Lange, fragile X, down and Rubinstein Taybi syndromes and autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 121(6), 465-486.
Reuzel, E., Embregts, P.J.C., Bosman, A.M., et al. (2013). Conversational synchronization in naturally occurring settings: A recurrence-based analysis of gaze directions and speech rhythms of staff and clients with intellectual disability. Journal of Nonverbal Behavior, 37(4), 281–305.