Stress-Free IEP® with Frances Shefter, Episode 79
In this episode of Stress-Free IEP ®, Frances Shefter speaks with Diane Gould, Founder & Executive Director of PDA North America. PDA North America provides support and resources for individuals, families, and professionals living with Pathological Demand Avoidance.
Episode Summary:
Introduction
Host Frances Shefter welcomes Diane Gould, a licensed clinical social worker and Executive Director of PDA North America. Diane specializes in supporting autistic individuals, particularly those with Pathological Demand Avoidance (PDA), which she prefers to frame as Persistent Drive for Autonomy. Diane discusses her work with families, her annual PDA-focused conference, and her book Navigating PDA in America. This episode delves into understanding PDA, addressing school challenges, and providing strategies to support PDA individuals.
Understanding PDA: Pathological Demand Avoidance
Pathological Demand Avoidance refers to a profile of autism characterized by a heightened need for autonomy and an instinctive avoidance of perceived demands. These individuals often show high creativity, imaginative thinking, and a tendency to mask their struggles through social strategies, making their needs less visible. Diane explains that PDA students can present very differently in various environments, often holding it together at school but falling apart at home. This masking can lead to misunderstandings, with schools attributing the struggles to parenting issues rather than recognizing the underlying challenges. PDA individuals frequently face misconceptions, such as being labeled as non-autistic due to having traits like social motivation or eye contact.
Challenges Faced by PDA Students in Schools
One of the biggest issues PDA students encounter in schools is the lack of recognition of how emotional regulation impacts learning. Diane highlights that students under constant stress or masking are not truly absorbing lessons, as their energy is consumed by trying to fit in and conform. Traditional school systems, with rigid schedules and attendance policies, often fail to accommodate these students’ needs. This rigidity can lead to severe emotional distress and eventual refusal or inability to attend school. Diane stresses that these issues are not about students being unwilling to attend but rather about the environment not meeting their needs, making it unsafe for them.
Supporting PDA Students in Schools
Diane emphasizes that effective support for PDA students begins with fostering trust and focusing on co-regulation. She explains that a safe, emotionally regulated environment is essential for any learning to occur. Flexibility in attendance and accommodations, such as allowing students to take breaks or leave when overwhelmed, can make a significant difference. However, Diane acknowledges the challenges in convincing schools to adopt such measures due to systemic rigidity. She advises parents to work collaboratively with schools, focusing on pragmatic solutions like partial attendance as a step toward creating a more supportive environment.
Parenting and Advocacy for PDA Students
For parents, Diane underscores the importance of avoiding traditional parenting traps, such as rewards, consequences, or ultimatums, which often backfire with PDA children. Instead, she advocates for listening to children’s needs, providing safe spaces, and supporting self-regulation without guilt or shame. Mental health days and flexible routines can be crucial for helping PDA children maintain balance and emotional well-being.
Diane also stresses the need for IEPs to serve as a roadmap for adults, outlining strategies to support the child rather than expecting the child to adapt to rigid systems. She critiques goals like “The child will use coping strategies,” noting that these should instead focus on how adults will help children learn and apply those strategies over time. Diane also highlights the harm of reward-based systems, which can increase pressure and anxiety for PDA students, suggesting instead that humor, creativity, and trust are more effective approaches.
Resources and Final Thoughts
Diane shares information about PDA North America’s resources, including a trusted provider directory and their annual PDA conference. The conference provides a space for families and professionals to connect, learn, and share experiences. Diane closes by encouraging parents to document what works and doesn’t work for their child, creating a guide for educators and caregivers. She reminds listeners that understanding and trust are the foundation for helping PDA children thrive.
Learn more about Diane Gould:
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Stress-Free IEP®:
Frances Shefter is an Education Attorney and Advocate who is committed to helping her clients have a Stress-Free IEP® experience. In each podcast, Frances interviews inspiring people to share information, educate you, empower you and help you get the knowledge you need.
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