Posted 26 Mar 2021
Emerging Neurodivergent Identities: A Lesson On Pathological Demand Avoidance From Kristy Forbes
We are learning and evolving in our understanding of the human brain all the time. The neurodiversity movement is a conversation, in which we are updating and evolving our language, labels and identities in a dynamic interaction between human cognition and what is considered “normal” in the modern world. For example, it is only been “normal” to communicate through literacy for 100-150 years. Many people wonder what are the “right” words to use to describe neurominorities /neurodivergence / neurodiversity and report feeling confused about how to think about it. It feels confusing because creating structure out of complexity is confusing and for those of use with professional expertise and lived experience, we are also still finding our way.
This is especially true when it comes to Pathological Demand Avoidance (PDA), a condition widely associated with Autism but one that is emerging as an identity in its own right. Even the name has come under scrutiny from many who experience it since the word “pathological” implies a medical condition that requires treatment. Once again, we have used language to otherise a way of being, framing it around the inconvenience it may cause and implying a deficit, despite the fact that many PDAers lead full and happy lives. For this reason, some people prefer to simply say “Demand Avoidant”. Perhaps a few years from now the language will have evolved on this particular subject and a new name will emerge. Either way, the UK’s PDA Society report that 70% of PDA young people were missing education, which is an exceptionally high level, with ongoing potential implications into adulthood and careers.
This week I wanted to provide some education and insight into PDA so I had a talk with Kristy Forbes from InTune Pathways and The Neurodivergent Co. Forbes is an Autistic support specialist for neurodivergent people, she is passionate about radical acceptance and the celebration of neurodiversity and a PDAer herself.
Understanding PDA
I started by asking her to help us define what Pathological Demand Avoidance is. She said “It tends to be a powerful inherent protective factor for a person who requires extreme autonomy and is autodidactic by nature. Anything that compromises the autonomy of that person escalates their anxiety to an extreme state, causing them to appear to be grasping for phenomenal amounts of control over people, places and things. The truth is, we are complying with a neurobiological response to compensate for the perceived loss of control. We are not always consciously choosing or deciding this but following a neurological command which is what PDA is.
For PDAers, that neurobiological response to our environment can often be disabling, preventing us from complying with the ideas, thoughts, wants and needs of others. It is often also disabling for us in terms of our own wants and needs. If I plan too much or get too excited about my own hobbies, for example, my brain will confuse that excitement and joyous anticipation with threat and danger, resulting in demand avoidance. The brain does not care for details; it is one job is to keep me alive and the PDA brain operates in a similar way to a brain that has experienced trauma.
The earlier years of a person’s life are hardest with PDA as these are the years we have the least amount of autonomy. It is an extremely complex neurobiology that is more often than not grossly misunderstood.”
Forbes makes an excellent point here about the misunderstandings that can occur when someone unfamiliar with PDA encounters it. For children this often comes in the form of being labelled “defiant” and the response is to try even harder to make them submit to an adults control. For adults it is usually being called “controlling” or “lazy”.
As a society we are too quick to assume negative motivation and will generally interpret a PDAers actions through a neurotypical lens, when in fact we should be offering acceptance and finding ways to work through it.
Supporting PDA Adults
Since Pathological Demand Avoidance in children is usually more noticeable and more widely discussed I wanted Forbes to share more about what PDA looks like in adults. She said “For many, it can be absolutely debilitating, but this is really in alignment with the social model of disability. That is, how well understood, supported and accommodated a person is in their environment. PDA expression can be anything from never placing ourselves in a position of vulnerability, to completely avoiding anything that is not on our terms. Many people go their lives not knowing they are PDAers and just label themselves as lazy, stubborn, defiant, insubordinate, pathological procrastinators and worse”.
It is an aspect of the social model of disability that is so important to keep focus on. Disability inclusion is not only about practical accommodations like ramps, video captions and quiet spaces, it must also be about changing attitudes that teach us to assume the worst when we find someone’s behaviour challenging.
I asked Forbes what she thought we could do to better support PDA colleagues at work? She said “Understanding. But even before that, suspension of disbelief. As humans, we tend to be completely fixated on behaviour-the outer expression of a person, and we make many assumptions about the behaviour without further exploration. PDA behaviour may “look” like the behaviour of another person but indicate something completely different.
Keeping an open mind, exploring possibilities and options with the PDAer, but mostly allowing for as much autonomy and opportunities for self-directed tasks and learning as possible. Using language of possibility and choice rather than being too directive or instructional, and allowing the person to work in a collaborative, equal means so that respect and connection is paramount. Directive, instructional language is to the PDA brain as peanuts are for the anaphylactic. We cannot change this response. It cannot be rewarded or punished away, which is why it is best accepted as a neurobiology that requires radical acceptance.
Many of us work best for ourselves or in roles with varying tasks to keep the brain on its toes. If the PDA brain does the same thing over and over, it becomes monotonous and ends up being a demand which is where resistance comes in. If we continue on this path of monotony, and there are emotional experiences associated with it such as dread or boredom, the task then becomes a threat which the brain seeks to avoid at any cost.”
In my coaching and co-coaching practice, I often focus on what Forbes terms “suspension of disbelief.” Humans have a tendency to assume that they can read the intentions of others by relating it to their own behaviours. If I withdraw when I am furious, I might assume that others who withdraw are also furious. If I talk excitedly with my hands when I am angry, I might assume that others who are talking excitedly with their hands are also angry. But it might not be furious, it might be taking time to process. And it might not be angry, it might be scared. And when PDA-ers are misunderstood, and their intentions miscast, this can be terrifying, setting off a cycle of spiralling communication that ends in relationship breakdown. To work with this, it is necessary to unpick the behavioural evidence from the (mis)interpretations. A few co-coaching sessions with manager and employee can work wonders.
How Can We Accommodate Parents In The Workforce?
Given the number of PDA kids who are forced out of education, I also wanted to discuss with Forbes the parents who drop out of the workforce because they are supporting a PDA child. Sadly, this is most often mothers. I asked her what changes we could employers make to facilitate neurodivergent families that want to work, to be included? She said:
“It depends on the capacity of the parent, and their need for something outside the family home. I need projects to keep me thriving, my work is my absolute joy and keeps me centred and balanced which helps me to be a better parent. However, there have been periods where I have not been able to work at all due to the support needs of my children at different stages.
I have worked in extremely flexible positions for organisations deemed family friendly (and they were), allowing me to start and finish at times that suit. But neurodivergent family culture is so fluid in the sense that our disability, our supports and our needs fluctuate from moment to moment so even in our best planning there will still be times where it may not work out.
Currently, I am supporting one of my children through processing significant trauma as the result of a lack of acceptance, understanding and appriopriate supports in the educational system. Supporting a child who has experienced trauma is far more common in PDA families than it should be. My work and my availability has been compromised temporarily. I cannot imagine a workplace where I could negotiate adequate and appropriate supports for myself in my parenting and professional role.
I am currently designing a program to support parents of neurodivergent children to work for themselves. Working from home is a huge help. Autonomy, flexibility. If anything, as an entire world, we have just learned that working from home is absolutely doable and possible and I would strongly encourage employers to consider this when supporting ND families.”
Flexibility is essential for families of disabled children. As an employer myself, I have found a great deal of talent, loyalty and dedication from employees who are given a bit of flexibility and understanding. I would rather have three days a week of someone brilliant and committed to our cause than five days a week of someone who is lukewarm.
Why Does PDA Get Left Out?
Finally, I wanted to address the fact that PDA is often left out of the wider neurodiversity conversation, as if it is a secondary issue or a minor co-occurring condition. I asked Forbes why she thought that might be.
“It is a relatively new neurodivergent identity and is still being explored in research. The current research began in the 80s which in research terms is very young. Thus far, it is still being debated around it is origin as it tends to mimic trauma responses yet is different in origin. It tends to be quite simplified as well, so when people hear “Autism with extreme anxiety” or “Autism with demand avoidance”, the language is deceptive and does PDA a huge disservice. This is so much more than simple demand avoidance. It is a complex and whole being experience that lacks appropriate and adequate language to express itself. It is difficult for PDAers to be active participants in terms of being the researchers ourselves because, well…PDA! There are numbers of us out here, however, growing in numbers sharing our experiences and we can all be found on The PDA Society website which has been a wonderful resource.
PDA is not a formal diagnosis in itself as the research continues, rather it is an identification or recognition alongside autism.”
PDA is a great case study of how our understanding of neurodiversity is constantly evolving. In the last fifty years it has gone from being nameless, to a subtype of Autism, to possibly a neurodivergent identity in its own right. By continuing to research and gain valuable insight from people like Kristy Forbes we can start to find better ways to offer vital support and inclusion to PDAers everywhere. I follow her on Instagram and her insights have touched me personally, her messages about internalised self-reproach are exceptionally reassuring and empowering. She holds wise words from which many of us can learn.
