Sources of further understanding

Description:

In addition to the information signposted throughout our website, we’d like to draw your attention to these additional sources of information, topics or fields of study which we feel are helpful in furthering understanding about PDA. This is a living list which we'll add to over time - if there's something you've found especially helpful and relevant please do get in touch with us.

Neurodiversity

The neurodiversity 'movement' views neurological differences (relating to cognition, sociability, learning, attention, mood and so on) as part of natural human variation - as a difference not a deficit - and embraces the social model of disability, whereby it is society's barriers that cause neurodivergent people to be disabled rather than their conditions per se.

There are a great many neurodivergent advocates - experts by experience - sharing invaluable information and insights. Some offer training or mentoring, others are engaged in research, writing books/blogs and creating memes. From a PDA specific perspective you may wish to read more from:

Many academics, authors and speakers' work is also very relevant and informative - here are a few to get started:

  • Peter Vermeulen's work is on understanding autism "in the context of how an autistic brain experiences the world"
  • Steve Silberman's book NeuroTribes "upends conventional thinking about autism and suggests a broader model for acceptance, understanding and full participation in society for people who think differently"
  • Dr Wenn Lawson is an autistic consultant, psychologist, author and researcher and shares many valuable resources on his website
  • Dr Damian Milton's 'double empathy' theory (you can read his original academic paper and/or an explanation for non-academics) highlights the empathy divide that arises because of the differences between autistic and non-autistic life experiences
  • Monotropism (a cognitive style based on tightly focused attention) is explained in this academic paper by Dinah Murray, Mike Lesser and Wenn Lawson and this article in The Psychologist by Fergus Murray.
  • Luke Beardon is a senior lecturer in autism at Sheffield Hallam University - his 'golden equation' of autism + the environment = outcome, together with other guidelines for the goal of achieving happy autistic adults, is covered in this presentation

Low Arousal approach

The Low Arousal approach, developed by clinical psychologist Andy McDonnell and his colleagues, is an internationally recognised model for supporting people who are highly distressed . Whilst originally developed for adults in in-patient settings, the low arousal approach aligns closely with helpful approaches for PDA and is applicable for all ages and settings.

Ross Greene – Lives in the Balance

Dr Ross Greene’s Collaborative & Proactive Solutions approach - described in detail on the website Lives in the Balance - challenges conventional views on "challenging behaviour" and offers a compassionate and practical roadmap to follow. Whilst the main focus is on children in education, the approach is applicable for all ages and settings and isn't diagnosis-specific.

Interoception 

Interoception is one of our 8 senses: it’s our ability to notice our body’s signals, understand their meaning and react in an effective way. Many neurodivergent individuals have differences in interoceptive awareness, which underpins many of our emotions and behaviours. The Department for Education in South Australia has a range of very helpful, free resources on interoception and Kelly Mahler's website is also very informative.

Trauma-informed approaches

Trauma is much more widespread than we may think and isn't confined to the 'big' things that might immediately come to mind (abuse, war, natural disasters etc.). It's a response to an environment, event or series of events that causes someone to feel unsafe, threatened and/or highly distressed. For autistic individuals, trauma can often arise from having to function in a non-autistic world. Trauma causes actual physiological change and leaves an individual hypervigilant - many seemingly 'extreme' reactions or responses are often expressions of traumatic stress. Trauma-informed approaches focus on building a feeling of trust and safety. These links give more information:

Polyvagal theory

Polyvagal theory, developed by Stephen Porges, explains the neurobiology of safety and danger and the three autonomic states we move through in response to threats: 'safe & social', 'fight or flight' and 'shutdown'. It's possible that, in PDA, demands may be 'coded' as threats and tapping in to which 'state' an individual is in at any one moment can help guide us as to how best to help. Deb Dana uses a polyvagal lens to help understand and resolve the impact of trauma and has developed this free worksheet and short demonstration video to help with regulating the nervous system.

Regulation 

It's very hard to be well-regulated when you’re in a constant state of hypervigilance; it's equally hard to be well-regulated when those around you are in a dysregulated state. Stress is 'transactional' - in many cases when someone is faced with a distressed individual they become very stressed themselves, creating a vicious circle. Co-regulation with reliable, well-regulated caregivers is the first step on the path to self-regulation. These resources provide more information on this concept:

Peer support

Last but by no means least, peer support is incredibly important. Finding your tribe and being able to share experiences and tips with others who "get it" can be literally life-saving. There are lots of Facebook-based PDA support groups, some regionally based, some focused on particular topics or audiences, and a small network of PDA support groups who arrange meet-ups. The PDA Society also runs a discussion forum and an enquiry line service.