‘Our campaign AGAINST PBS & ABA is intended as a disruptive act.’
In this blog, Neurodiverse Connection’s Founder and Director, Jill Corbyn, reflects on our campaign ‘AGAINST PBS & ABA’ , how the campaign has been received and why we believe we need to oppose the status quo.
Last week, Neurodiverse Connection launched our campaign ‘Against PBS & ABA’.
We’ve already heard reflections that we aren’t doing it right, that we will upset people, that we’re being too abrasive and that we should find a middle ground.
The official definition of tone policing is ‘a conversational tactic that dismisses the ideas being communicated when they are perceived to be delivered in an angry, frustrated, sad, fearful, or otherwise emotionally charged manner.’ It resonates with our experience of speaking out on this topic.
Autistic people have been advocating for change and sharing their experiences of harm and their concerns for others relating to PBS and ABA for many years. Yet, there is little change in policy and practice in Health and Social Care.
Neurodiverse Connection’s campaign ‘Against PBS & ABA’ is intended as a disruptive act.
We are choosing to amplify the concerns and the evidence that has been largely unheard to date. We are choosing to speak out, to question and to challenge.
We believe that, sometimes, we need to be unambiguous. We need to oppose the status quo. We need to ask difficult questions. We need to lean into the discomfort to enable necessary change.
Our ambition is not to vilify. We don’t want to argue, to start a fight, to make people feel bad for choices they made when they had limited information.
We want to challenge oppressive and neuronormative practices.
We want to support the voice of people with lived experience in health and social care policy. We want to support a shift to Neurodivergent affirming practice that aligns with the current evidence base. We want to support a ‘gold standard’, best practice approach. We want to share the evidence so that practitioners can make informed decisions about how they work with people.
“Do the best you can until you know better. Then when you know better, do better. ”
We’ve been accused of being unbalanced, one-sided, biased. It’s curious that the proponents of these approaches, that have been found to be harmful and cause trauma, but who haven’t amplified these concerns or included them in advertising, haven’t been called out on their own biases.
It’s interesting that sharing a different perspective, amplifying the voices of people who’ve been harmed in services, and inviting people to question an accepted approach is met with such strong reaction. Why is that?
Neurodiverse Connection’s campaign aims to support a change in policy and practice. We hope that we can support policy makers and practitioners to question the widely accepted practice and to consider if better alternatives are available. We believe that there are.
We know that some advocates of PBS say that it has been helpful to them and their families. We’ve particularly heard this from some family carers of Autistic people and people with a learning disability. However, we’ve also heard numerous accounts of when PBS hasn’t worked, of when it has harmed, of when it hasn’t been applied ‘properly’, of when ‘it wasn’t PBS’. We wonder if it was ever really PBS that was working, or if it was the context in which it was used – if it was really the relationship, love, care and attention of the person supporting that made the difference.
One of the reasons that we advocate for the Autistic SPACE framework as a suitable alternative is because if offers clear and helpful suggestions for needs that can be considered when supporting someone. We regularly work with teams who refer to the person they support as ‘violent’ or ‘disruptive’ when they are distressed. Often the sensory environment hasn’t been considered, the support approach isn’t relational, the communication is unclear and confusing, all contributing to overload, distress and dysregulation. Adjusting the external environment, focusing on co-regulation, trusting relationships and approaching with care are often transformative. Life changing.
The evidence base against PBS is pretty clear for Neurodivergent people who don’t have a learning disability. Even the International Journal of PBS agree that ‘it isn’t intended’ for this group. But why would it be different for a Neurodivergent person, just because they do have a learning disability?
Arguably, there is a stronger evidence base for use of PBS with people with a learning disability, Neurodivergent or not. However, NdC believe that many of the same concerns apply.
We want to know what people with a learning disability think about this. Our experience is that many people with learning disabilities aren’t aware of the concerns about PBS and have never been supported to make a choice – or to give consent – to its use.
Our Easy Read and video are almost ready. We want to know what people with a learning disability think about this. It’s curious that in over 40 years of use, there isn’t a robust study to find people’s views and experiences. We want to change that.
We also know that PBS and ABA is being used for anyone accessing certain services (eg in schools, in dementia care, in mental health inpatient services). If you’ve experienced this, we welcome hearing from you, too.
So, whether you agree with our position or not, we hope that you support a variety of voices and information on an important topic. We hope that you welcome the amplification of people’s experiences and the sharing of resources and alternative approaches that might support positive change for people, by enabling an understanding and meeting of need, consensual practice and a relational approach.
Let’s stay curious.
Are you ‘AGAINST PBS & ABA’?
Show your support and get involved in the campaign.
✔️Sign your support for the campaign position statement
