Critiquing PBS: it is missing lived experience
We’re joined on the blog today by Lizzie Smith, NdC’s Communications Lead, for the first blog of our latest campaign ‘Against PBS & ABA’.
Lizzie asks, are you missing the lived experience in your practice?
Last year, we ran a campaign called ‘Against PBS & ABA’. The purpose of this campaign was to challenge the status quo and disrupt the widely held assumption that Positive Behaviour Support (PBS) and Applied Behaviour Analysis (ABA) are an appropriate approach to supporting Neurodivergent people, including those with a learning disability. In today’s blog, we’re asking, are you missing the lived experience in your practice?
We know that the research base behind PBS is inadequate. In fact, recent and reputable research from Gore et al. (2022), published in the International Journal of PBS, recognised that PBS ‘…is not intended for persons identifying as Neurodivergent who do not have a learning disability’ and there is no evidence base supporting its use, or understanding the risks of its use, on Neurodivergent people.
We also firmly believe that many of the concerns around PBS and ABA are relevant to those with learning disabilities. There are considerable concerns from professionals, researchers and Neurodivergent people, including those with a learning disability, who have experienced PBS and/or ABA, that these behaviourist methods are not human-rights affirming (Irish Joint Committee on Disability Matters, 2023). Behavioural interventions frequently centre compliance and control over self-determination, prioritising the modification of behaviours to conform to societal, cultural and social norms, over the consideration of the preferences, needs and consent of the individual.
Despite the attempts by those advocating for the continued use of PBS to distance the model from its predecessor, Applied Behaviour Analysis, it is an undeniable fact that PBS is founded on and underpinned by the principles of ABA (Johnson et al., 2006). PBS is a continuation of a model that focuses upon observable behaviour, without seeking to understand the internal experience of individuals (Cooper et al., 2020). Both ABA and PBS are rooted in the medical model of disability: seeking to ‘fix’ what society perceives as ‘wrong’ or ‘broken’: failing to respect and celebrate the unique ways Neurodivergent people, including those with a learning disability, experience and interact with the world around us. And, even within the systems routinely applying these behaviourist approaches, research tells us that there are significant and troubling discrepancies in the quality of the PBS interventions (Gore et al., 2022).
We understand that educational, therapeutic and clinical settings are invested in the continued use of PBS. We recognise that our challenge may feel uncomfortable. It is difficult to have your world view challenged.
We also understand that educational, therapeutic and clinical settings have spent years training in PBS, enforcing its widespread use and potentially believing they are doing their best for Neurodivergent people, including those with a learning disability.
We recognise that many people using behaviourist models have good intentions. Perhaps these people are not even aware that there are alternatives? We want this to change.
So what can you do?
A crucially problematic aspect of PBS is the lack of lived experience in the existing literature. This failure to consult with and be informed by the real-world experiences, preferences, wants and needs of the people upon which PBS is used, often results in interventions that prioritise compliance over connection. The good intentions of the practitioner do not negate the harm and impact caused by how PBS is often experienced in practice, particularly when power dynamics and behavioural goals override individual autonomy and embed masking.
Ask yourself, is your approach informed by lived experience? Does it prioritise the unique identity, values and needs of the person you’re supporting? Or is it centred around professional perspectives and priorities?
The following questions will help you to critique your approach to assess whether it is informed by lived experience or if it centres around professional perspective.
Where has this approach come from? Who was involved in its development? Are there any conflicts of interest?
Did the development of this approach include the involvement of those with lived experiences? What do marginalised and seldom-heard communities say about the approach? Were lived-experiencecontributions centred and valued?
Is the approach adapted to be trauma-informed and human-rights affirming? How has this been achieved?
Does the approach explicitly consider consent? Is consent scrutinised, to ensure that it is consent, not compliance?
Does the approach consider intent versus impact? Has due consideration been given to power imbalances? Does the approach consider potential risk of harm?
Is the approach supported by current, high-quality literature and evidence? What does the lived-experience community say about the approach?
How does using PBS feel for you, as a professional? Are you ‘managing’ and ‘doing-to’ the people you’re caring for and supporting, or do you feel able to form respectful, attuned relationships, centred on respect for their humanity?
It is not PBS or nothing. There are empowering, compassionate, relational, Autism-informed, trauma-informed alternatives to PBS.
Want to learn more?
We’ve created a free interactive toolkit that supports a neurodiversity-affirming approach to care planning for Autistic individuals across health, education and social care.
The foundation of this toolkit is the Autistic SPACE Framework – a person-centred care approach developed by Dr Mary Doherty, Dr Sue McCowan and Dr Sebastian CK Shaw (2023) – which we build on by integrating a stronger emphasis on emotional safety, sensory support, relational trust, embodied understanding and human rights.
We believe that compassionate, relational and context-aware approaches are a more ethical and effective alternative to behaviourist models that prioritise compliance over wellbeing.
