5 minute read
Meet the Hevelone Family: Understanding Pathological Demand Avoidance
BY CHRISTINA MCGAIRK: EDITOR-IN-CHIEF • PHOTOS BY MAGDALENE A.R. MASTIN
In recent years, there has been growing awareness of neurodevelopmental disabilities, shedding light on many lesser-known profiles. One such profile is Pathological Demand Avoidance (PDA), a behavioral profile, often considered within the autism spectrum that can be difficult to grasp, both for those diagnosed and for those interacting with them. According to PDA North America, PDA individuals experience an intense resistance to delay everyday demands and expectations, even those that may seem routine or enjoyable. Despite gaining more recognition, PDA continues to be underdiagnosed and misunderstood.
Ruth Hevelone, Director of Strategic Growth & Marketing for PDA North America, is a late-diagnosed AuDHD mom of 2 twin boys, age 5, who are both PDA and autistic.
“Parenting through the lens of caring for a disabled nervous system is no small feat,” said Hevelone. “It takes more patience than you can even consider, the most mental gymnastics you can imagine, and as my friend Zach Morris says, it’s LEGENDARY level parenting.”
Recognizing the signs of PDA can be difficult, but involves behaviors such as:
• Extreme resistance to everyday demands like eating, drinking, getting dressed, and sleeping.
• Use of social strategies such as distraction and negotiation.
• Sudden mood swings ranging from hyper-vigilance to intensity of emotions.
• A strong anxiety driven need to control their environment, which can lead to struggles with sticking to a routine or schedule.
Diane Gould, Founder and Executive Director of PDA North America and a Licensed Clinical Social Worker, believes that PDA behaviors are misunderstood.
“PDA at its core is both a nervous system disability and an invisible one, said Gould. “This isn’t defiance or manipulation, but a survival-based reaction. Understanding this is crucial for offering the right kind of support.”
Although there is no universal approach, certain strategies have proven effective for PDA individuals. The key lies in recognizing and adjusting to their specific needs.
“There are many different coping strategies for supporting PDA people but one of the biggest ones is reducing perceived demands through collaboration and autonomy.” said Hevelone. “This is a strategy to helps lower their stress and anxiety levels.”
According to Hevelone, conventional parenting, teaching, or behavioral strategies (like rewards/punishments) usually don’t work—and can even backfire. “Telling a PDA child “no” or giving them a direct demand will only increase their anxiety and lead to more behaviors. Many PDA people are master negotiators - and we see that as a strength, not a weakness. Most PDAers use negotiation as a coping strategy in order to comply. Some PDAers escape into role-play to lower their anxiety. Engaging in roleplay or adopting a different persona can make tasks feel less demanding, providing a psychological buffer.”
PDA awareness is vital to ensure that individuals with this disability receive the support they need. “There needs to be better diagnostic tools for assessing PDA,” said Hevelove. “More research on PDA so we can get more providers & educators on board to supporting this population in ways that doesn’t increase their stress/behaviors.” Gould, who is late-diagnosed autistic herself, is concerned about how PDA minorities are misunderstood.
“PDA children with disabilities, Black and Brown children especially, are disproportionately affected by exclusionary discipline like restraint, seclusion, or suspension,” said Gould, “this is very unfortunate.”
In the effort to increase awareness, Hevelove urges more schools and workplaces take a compassionate, informed approach. “By embracing flexibility, understanding, and inclusion, society can create an environment where PDA people and their families feel supported and empowered, not ashamed and judged.”
As our understanding of neurodiversity increases, it’s important that we acknowledge and support the distinct challenges faced by PDA individuals. Through increased awareness and implementing personalized strategies, we can support PDA individuals live fulfilling and successful lives.
Pathological Demand Avoidance may be a complex condition, but the key is to raise awareness to provide better support for PDA individuals. This includes educating school staff and professionals such as social workers and therapists, and PDA North America does just that.
Hevelone also stresses the importance of caregivers finding community. “Community is everything. Parenting through a PDA lens can be really transformative for your child, but can also be extremely lonely as it goes against everything you’ve likely ever been taught about how to parent and we are often harshly judged.” She suggested finding PDA Facebook groups and PDA affirming providers who can support caregivers and their families. PDA North America also offers peer support groups, weekly webinars, tons of free resources and trainings about every aspect of PDA.
To learn more about Pathological Demand Avoidance, visit https:// pdanorthamerica.org. Diane Gould has also published a book with Ruth Fidler entitled “Navigating PDA in America.”
