07/05/2025
https://www.facebook.com/share/p/1AUT3Kt2qp/
Research in Focus: "The experience of mothers of autistic children with a pathological demand avoidance profile" by Curtis & Izett (2025).
The researchers interviewed 10 mothers of primary school-aged children (5-11 years) with PDA profiles, using interpretative phenomenological analysis to explore their experiences in depth. The findings captured four powerful themes:
1. The crucial need for shared understanding about PDA - Mothers described a profound "light-bulb moment" when discovering PDA, finally making sense of their child's behaviour. However, they faced significant challenges from professionals with limited PDA knowledge, often experiencing blame for their "lenient" parenting approach. One mother painfully summarised this as PDA being seen as "this weird, fake thing that bad people have for people who can't parent well." Several mothers reported harmful practices from professionals who didn't understand PDA, including forcing compliance which only traumatised their children further.
2. The overwhelming power of PDA in family life - The research highlighted the intense parent-child relationship, with mothers describing themselves as their child's "safe place" and some likening their support role to being their child's "wheelchair." This demanding relationship created isolation as families often stayed in their "home bubble" where the child felt safer. Mothers spoke poignantly about the difficulty of balancing competing family needs, with one mother expressing the "phenomenal problem" of feeling like "a crappy mum" to her other children when having to prioritise her PDA child.
3. The profound emotional toll - Mothers described their "capacity always at zero," experiencing constant anxiety about what might trigger their child next. The research captured their nuanced emotional journey - from empathising deeply with their child's struggles to experiencing taboo feelings of resentment, guilt and grief for the parent-child relationship they had imagined. Several mothers even attributed their physical health problems to the chronic stress of parenting.
4. The remarkable coping strategies mothers develop - Despite these challenges, mothers showed incredible resilience - cherishing rare moments of independence, focusing on how to help their child, celebrating small wins, and maintaining hope for the future. They found particular solace in connecting with other parents of PDA children who provided "magic inbuilt support because they just sort of get it."
It should be noted that, as with all research, this study has certain limitations in its scope. The participants were all biological mothers from one geographical area, without including fathers or exploring cultural differences. However, these limitations don't diminish the importance of finally giving voice to these mothers' experiences. The depth and richness of the qualitative approach offers insights that simply wouldn't emerge from quantitative studies, capturing the complex emotional landscape of parenting a child with PDA in a way that feels authentic and validating.
What strikes me most powerfully is how this research captures that intense parent-child dynamic so many of us experience - adapting our parenting to provide the autonomy and control our children need to manage their anxiety, while often facing judgment for not using traditional parenting approaches.
The findings highlight the urgent need for PDA-informed support for families and professionals. It suggests that collaborative, low-demand approaches may be more effective than traditional behaviour management strategies - something many of us have learned through lived experience, often after trying approaches that only increased our children's distress.
What's your experience? Does this research capture aspects of your journey with PDA?
https://pmc.ncbi.nlm.nih.gov/articles/PMC11747059
