Autism and Disability Identity
UK Disability History Month takes place each year to promote the rights of disabled people and their struggles for equality, historically and presently. It’s an opportunity to celebrate people and progress in disability activism whilst continuing to advocate and raise awareness, and challenge stereotypes, stigma, and ableism. With this, and my PhD research on autism victimology, it made me wonder – how do autistic people align with the disability identity?
It has been well established now that autism is considered a neurodevelopmental way of being, characterised by a range of experiences incorporating both challenges and strengths, and shapes how people perceive and interact with the world. However, when it comes to autism being a disability, or autistic people labelling as disabled; this is an ongoing debate both in and out with the autistic community.
Medical, social, or neurodiversity?
The way society understands disability significantly influences how autistic people are understood, but also how they connect to disability. Within disability theory, it is well-known that there are two prominent models with very contrasting views: the medical model and the social model. Through the medical model, understandings of disabled people tend to emphasise diagnosis, treatment, and cure, viewing disability as a problem centered on the individual and requiring medical intervention. Disabled people are seen as straying from ‘normal’ and are pathologised. For autism, this can mean that it is perceived as a disorder, and commonly understood traits, like social communication or sensory experiences, are often framed as problems to be fixed. Contrary to this, the social model problematises society, viewing disability as a social issue rather than an individual one. It considers the barriers within society that create disability, such as inaccessible environments, societal norms, or lack of considerations for needs or differences. By this logic, autistic people are therefore not inherently disabled by neurological differences, but instead primarily by a society that is based on neurotypical people, giving rise to disability.
Source: USAID (2024) Medical Model and Social Model of Disability.
Historically, the medical model has dominated autism, where research and healthcare have often tried to cure individuals, and they are expected to ‘normalise’ their behaviors to fit in with neurotypically dominant societal expectations. Their autism is often portrayed as a disability that is distinct and separate to the person, rather than wholly part of them. More recently, the social model has been preferred by much of the community and many of its advocates challenge the idea of pathologising autism. Rather than focusing on limitations, it highlights the importance of equality, inclusion, and accessibility. However, both models are very much still used interchangeably across society, shaping a complex relationship between autism, disability, and identity.
For many autistic people, identifying with disability can feel limiting as it can fail to capture the unique cognitive styles and experiences of neurodiversity. In a move to seek a more fitting representation of experience, many autistic people are embracing the neurodiversity paradigm, celebrating neurological differences as the natural variation of human experience. This can challenge the notions behind the medical model, understanding autism as inherently part of an individual’s identity that is to be accepted and supported, building on the social model, taking a more holistic view of the autism experience within disability, and centering the often-forgotten voices of neurodivergent people. Importantly, neurodiversity is framed as being invaluable and at times challenging, meaning “autism can be both an identity and an embodied disability”[1]. Yet, although the neurodiversity paradigm can be empowering, it is important to acknowledge that not everyone on the autism spectrum resonates with this developing perspective. For example, autistic people who face more significant challenges navigating daily life and those with greater support needs may feel better reflected in traditional medical models, particularly those who have co-occurring conditions.
Practical considerations of labelling
It is important to consider the practical costs and benefits that go with the disability identity. For some people, being labelled disabled can be validating and used to recognise daily struggles and provide an easier route to supports, particularly when the disabling experience is often ‘invisible’ or ‘hidden’. It can open doors to access relevant services, workplace accommodations, educational adjustments, and financial benefits that can all make life more accessible in a world that is not made for neurodivergent people. The disability label can help autistic people navigate these complex and often limiting systems and can provide the leverage needed to advocate for autistic rights. Although for some people this may be purely practical; labelling themselves as disabled as a means to strategically present to access support, rather than core to their identity. However, it is worth noting that many autistic people have experiences of being told they aren’t even disabled enough to receive this support and societal attitudes like this can play a significant role in both societal- and self-perception relating to disability. Some have suggested that important limitations of the disability benefits system we currently have in the UK stem from medical model-thinking.
In many cultures, disability (including autism) is heavily stigmatised, and some may wish to distance themselves from any labelling at all to avoid exploitation or further discrimination. With this social stigmatisation and ableism, ‘outing’ as disabled can been seen as risky and people may feel fearful of the realities of further discrimination, rather than the potential opportunities that it can provide to reach support and connect with disabled communities. Autistic individuals can also internalise these negative stereotypes of both autism and disability which can impact their self-esteem and willingness to self-identify regardless, minimising any potential for support and community interaction. On top of this, many who experience late autism diagnosis (especially women), coming to terms with this and how it connects with their life can be enough of a hurdle, before adding disability to the mix.
Final thoughts
Autistic people’s relationship with identity and the concept of disability is as diverse as the autistic spectrum itself. People relating to and identifying as disabled is highly variable and personal; some find it empowering, a tool for advocacy, inclusion, and validation, whilst others reject the label, instead focusing on strengths and the neurodiversity movement’s vision for acceptance, and others might distance themselves from both angles. Social perspectives are slowly changing as we redefine disability and autism understanding, and with this, individuals may feel more comfortable embracing their identity, and hopefully do this as a source of strength, community, and empowerment. What is clear is that no single perspective can capture the experiences of all autistic individuals. It doesn’t have to be one or the other, and whether it is seen as a difference or a disability, supporting self-identification and understanding and accommodating diverse needs should be the priority for building an inclusive society that respects autistic people. Autistic, disabled, or neurodivergent, we should be listening to voices, understanding, applying change, and celebrating diversity.
[1] Botha, M. and Gillespie-Lynch, K. (2022) ‘Come as You Are: Examining Autistic Identity Development and the Neurodiversity Movement through an Intersectional Lens’, Human Development, 66(2), pp. 93–112. https://doi.org/10.1159/000524123.