We are getting ready to start a new project that aims to shed light on Pathological Demand Avoidance (PDA), and the preparation phase is well underway. We have already had some preliminary talks with parents to gain initial insights into how PDA impacts their daily lives, but there is still much more to learn.
The Start of Our Learning Journey
When I first heard about PDA, or Pathological Demand Avoidance, I had no idea what it was. Like many, I found myself searching online, trying to make sense of this term that seems so important to the lives of many families. I soon realised I wasn’t alone in my confusion. PDA remains relatively unknown to many, and even among those who have heard of it, there are still many misunderstandings about what it actually involves.
Understanding PDA and Its Impact
In preparing for this project, we will aim to delve deeper into what PDA is. We will be exploring how PDA, a profile on the autism spectrum, is characterised by an intense avoidance of everyday demands and expectations, driven by anxiety and a need to feel in control. We will focus on understanding how children with PDA might appear extremely oppositional or defiant, but their behaviour is actually a response to an overwhelming sense of anxiety about demands—whether they are as simple as “put on your shoes” or as complex as “make a friend” or “join a group activity.”
While PDA falls under the broader umbrella of autism, it presents differently from other profiles. Unlike those who may prefer routines or solitary activities, children with PDA can be highly social but use sophisticated strategies to avoid situations they feel they cannot cope with. These strategies may range from distraction and negotiation to outright refusal or even aggression when they feel cornered or pressured.
Seeking a Clearer Picture: How Many Are Affected?
We will also be investigating how many families in the UK are affected by PDA. Current estimates suggest PDA affects around 1 in 100 children, which aligns with the prevalence of autism spectrum disorders, but we understand that the true number could be significantly higher. Due to a lack of awareness and understanding about PDA, many cases may go unreported or undiagnosed, and some are mistaken for other conditions like Oppositional Defiant Disorder (ODD) or Attention Deficit Hyperactivity Disorder (ADHD).
To ensure our project paints an accurate picture, we will be reaching out to professionals, schools, and support groups to gather more concrete data and to understand the full scope of PDA’s impact on families across the country.
Conversations with Parents: Preparing for Deeper Insights
Our initial conversations with parents have already highlighted key challenges, but we know there is much more to uncover. We will continue these discussions, speaking with more parents who are raising children with PDA. From these conversations, we hope to gain deeper insights into their everyday struggles, particularly around schooling, social situations, and managing routines at home.
One parent, for example, mentioned how difficult it is to get schools to recognise PDA as a legitimate profile within the autism spectrum. He said, “The teachers kept telling me my son was just ‘being naughty’ or ‘acting up,’ but I knew there was something more going on. It took years before we finally got a diagnosis that included PDA, and even then, the support has been limited.”
We will also explore how social situations can feel like a minefield for many families. One parent shared, “My daughter can seem charming and social at first, but the moment she feels pressured or like she’s being told what to do, she either shuts down or lashes out. It’s so hard because other parents don’t understand, and I find myself constantly explaining.”
Highlighting the Need for Greater Awareness and Understanding
From these ongoing discussions, we will aim to highlight that there is still a significant gap in awareness and understanding of PDA. Many parents we have spoken with feel isolated, not only because of the daily challenges they face but also because of a lack of understanding from friends, family, and even healthcare professionals.
We will work to capture these stories, exploring how many families are still struggling to get the support they need. As one parent put it, “We feel like we’re constantly fighting to be understood. Even when we do find professionals who understand PDA, it can be a battle to get the right support in place.”
Moving Forward: The Next Steps for Our Project
As we continue gathering information, we will also be planning the next steps for our project. We will be developing a series of powerful photographs and stories that capture the everyday realities of families living with PDA. Our aim is to create an online and in-person exhibition that raises awareness, challenges misconceptions, and fosters empathy and understanding.
To bring this vision to life, we will be looking for funding to support the project. This funding will be essential for covering production costs, developing interactive elements like a virtual reality experience, and collaborating with charitable organisations that provide support to these families. We are reaching out to potential sponsors, applying for grants, and exploring partnerships with organisations that share our commitment to raising awareness and fostering a deeper understanding of PDA.
Looking Ahead: Building a More Understanding World
Through this project, we will aim to build a more compassionate and inclusive world for those living with PDA. We will continue to speak with families, share their stories, and learn from their experiences. Our goal will be to create a platform where their voices are heard, their challenges are understood, and their needs are addressed.
We are excited to begin this journey and hopeful that, with the right support, we will make a meaningful impact. We look forward to the opportunities ahead and to helping create a world where every child, regardless of their challenges, is given the recognition, understanding, and support they need to thrive.
