03 Mar 2024
Local blogger and mum of two Steph Curtis has recently celebrated the launch of her much-anticipated book, ‘PDA in the Family’, about her fight for support for the rare condition Pathological Demand Avoidance.
Steph began her blog Steph’s Two Girls 14 years ago, on the day her younger daughter was diagnosed with autism. Her path to becoming a prominent voice in the PDA community was borne out of what she describes as “a lightbulb moment’ when she happened upon the term Pathological Demand Avoidance several months after her daughter was diagnosed.
Steph had been meeting with other mums of autistic children but felt that her own daughter was different to those children in some ways. She also attended autism specific parenting courses but was puzzled when the approaches suggested didn’t seem to work for her daughter. She was searching for some kind of explanation in order to help her daughter when she came across descriptions of the key features of PDA and realised these all accurately described her daughter.
Pathological Demand Avoidance was first recognised by Professor Elizabeth Newson in the 1980s and is described as a profile, or type, of autism. PDA individuals will display an extreme avoidance of everyday demands and an overwhelming need for control alongside other autistic characteristics.
Steph originally hoped that sharing how her daughter’s behaviour differed from other children of a similar age would lead to more understanding and a smoother path through life for their daughter. The result was Steph’s Two Girls, a blog that has become recognised as a huge support for families navigating the challenges of family life with PDA.
Steph has since become an ardent advocate for PDA, using her blog as a platform to raise awareness, share personal experiences, and foster a supportive community. Her authentic storytelling breaks down
stereotypes and builds bridges of understanding for families grappling with PDA.
Steph received a blogging award in 2022 as a testament to her many years of sharing online in order to help other families and to the impact her words have on those facing similar challenges.
She said: “The truth about SEND is often shrouded in misconception and misunderstanding, leaving many families feeling isolated and overwhelmed. My blog dismantles these barriers, offering a glimpse into the daily triumphs and tribulations of raising a child with SEND.”
Steph’s Two Girls is now considered a comprehensive resource for families, educators, and anyone seeking a deeper understanding of PDA. Parents of children with SEND often find solace in knowing that they are not alone in their struggles, and Steph’s candid approach provides a lifeline for those in need.
The launch of ‘PDA in the Family’ marks a significant milestone in her family’s journey. Steph wanted to bring all of their experiences together in one place in order to provide a resource for families facing similar challenges. The book offers a rare glimpse into the highs and lows of raising a child with PDA. From the initial struggles to the breakthrough moments, ‘PDA in the Family’ weaves a narrative that is both personal and universal.
Following the release of the book, Steph opened up about the motivations behind it: “This journey has been about more than just sharing our story. It’s about raising awareness of PDA while encouraging a more profound understanding.
“It is also intended to provide support to parents and carers who might be feeling alone and isolated.”
The book follows the family’s journey from that day of autism diagnosis, exploring topics such as mainstream and specialist schooling, anxiety and mental health, sensory issues and relationships.
It has also been a family affair; Steph’s husband Chris has written a chapter on how this unusual journey has felt to him and both girls have had their thoughts included in the book.
It delves into the intricacies of PDA itself, demystifying the condition and challenging preconceived notions.
Steph is quick to point out that PDA is not a one-size-fits-all diagnosis: “It’s a spectrum, and understanding that spectrum is crucial to providing the right kind of support for PDA individuals.
“It’s not just a book, it’s a conversation starter, a catalyst for change.
“I hope it sparks discussions within families, schools, and communities about how we can better support PDA individuals.”
Local independent bookshop Books on the Hill will be holding an event entitled ‘In Conversation With Steph Curtis’ on Wednesday March 6 at 7pm; tickets available via their website.
Find out more on the Steph’s Two Girls blog at
www.stephstwogirls.co.uk/2024/02/pda-in-family-life-after-lightbulb.html
