Recently, a tidal wave of interest in Pathological Demand Avoidance (PDA) has crashed over the autism community. In answer, the first national conference focused on this subtype will be held in Perth, Australia, this November. Over 650 people purchased tickets to the event. This meeting provided an opportunity for families, providers and advocates to express their experiences and perspectives on the challenges, strengths and promising aspects of PDA. As Milly, a young girl recently diagnosed with PDA, reminds us, awareness is everything and it starts here. In the past, she struggled with sensory processing disorder, anxiety, selective mutism, and autism.
The Australian government’s National Autism Strategy officially recognizes PDA as a profile of autism, which has gained traction in recent years. The reality of PDA culture for many families living with the condition is one of isolation and lack of comprehension. Dr. Kidd, one of the country’s foremost experts on environmental justice, made an important observation. Without appropriate support, children with PDA face increased risks of anxiety, depression and social exclusion.
Families with children with PDA are understandably confused and overwhelmed by the inherent challenges of PDA. Milly’s mother Jenny only found out that her daughter was suffering from it after years of searching for help. Convenor of the conference, Heidi Brandis, after nine years of looking for guidance and support, finally stumbled upon PDA. Her story started when she started looking for help for her oldest child. Their stories are living testaments to the growing need for empathy and compassion, and for more research and support for families affected by this serious condition.
The Challenges of PDA
Pathological Demand Avoidance — characterized by an extreme need for control and autonomy. This type of behavior is frequently driven by extreme anxiety. It further contributes to challenges with emotional regulation and an increased propensity for extreme responses to stress.
Dr. Kidd noted that children with PDA may seem articulate and capable but can panic when faced with even simple expectations. Your son or daughter doesn’t see how they’re going to put their clothes on in the morning. This challenge rarely comes from a place of rebellion, but rather from the paralyzing effects of anxiety.
“A child might struggle to get dressed in the morning, not out of defiance, but because the demand feels overwhelming in terms of anxiety.” – Dr. Kidd
Capacity in children with PDA is not fixed, it can vary wildly even day-to-day. This results in a situation where a child can possibly handle the thing one day, but they can’t handle it at all the next day. Knowing how much that can vary is essential for parents and educators who want to fit the right level of support to the child.
“Importantly, capacity can fluctuate — a child might manage a task one day and find it completely unmanageable the next. The common thread is that demands, even ordinary ones, can feel threatening.” – Dr. Kidd
Milly’s diagnosis was overwhelming and difficult to accept. After looking back on her experiences and the impact of her approach, she noticed that Milly’s discomfort usually came from outside expectations. Restrictions set off her fears of abandonment.
“The trigger was always a demand or boundary being put in place. Looking back I was just banging my head against a brick wall.” – Jenny
The Role of Community and Support
We have seen how invaluable community support is for families living with PDA. But instead of letting that experience overwhelm her, Jenny turned into an advocate. She started the PDA Perth WA Parent Community and Support Page, which has now grown to almost 3,000 members. This online community provides a vital source of information and connection for parents who often feel isolated in their journeys.
Dr. Kidd’s clinics in Perth and Melbourne provide peer-supportive and culturally appropriate care for children with a PDA profile. Her mission is to help families recognize the shades of PDA while offering practical approaches to face daily hurdles that come with it.
“Families can feel isolated, judged and misunderstood.” – Dr. Kidd
The recent PDA conference was a kind of intellectual and emotional homecoming for neurodivergent and neurotypical families and professionals alike. Heidi Brandis noted that the organizing committee worked diligently to create an engaging and informative event that would resonate with attendees.
“Our committee has worked absolutely flat out to deliver an engaging, informative and neuro-affirming event for hundreds of neurodivergent and neurotypical families and professionals.” – [Conference Committee]
This conference ignited interest in PDA. It had the distinct effect of fostering deep connections between everyone in the room, most of whom shared the same lived experience.
The Strengths of Individuals with PDA
Although PDA poses serious challenges, research and experiences have likewise shone a light on unique gifts in people identified as having this contraindicated condition. Such individuals usually have a bedrock of above-average intelligence accompanied by creativity and nuance of wit, all of which flourishes when appropriately cultivated.
Jenny described her epiphany regarding her daughter’s needs. Rather than attempting to “fix” Milly, she realized that she needed to change her approach in order to better support her child.
“I remember it was quite an epiphany to realise for the first time that instead of trying to ‘fix Milly,’ it was me that would need to do things differently.” – Jenny
By fostering an understanding environment that acknowledges these strengths while addressing challenges, families can better support their children with PDA.
