Navigating PDA, a New Landscape of Autism
Pathological Demand Avoidance in the House
Fairly New Addition to Our Spectrum
As many of you know I have two autistic sons, Harrison, 24 years old and Lazlo, 10 years old. Both were diagnosed at 19 months, didn’t talk until age three and love Disneyland, the ocean, chocolate, dogs and their family, and that’s about the end of what they have in common.
When Lazlo was four, he suddenly started speaking in close to complete sentences. We have a video of him belting out, “I wanna rock!” At five he started reading and emotionally connecting; he was still in special education classroom, but Michael and I were thrilled with what seemed like a smoother path ahead of us as far as communication. We were pretty seasoned with the regular stressors of managing autism like insurance coverage, regional centers, the public gaze. We also were adept at addressing sensory needs, installing a hammock swing in our living room, buying headphones, and offering lots of supports. It didn’t feel like the same emotional and logistical heavy lifting that I had gone through with Harrison thirteen years earlier.
Changes in the Way We Understand Dysregulation
In 2009, Harrison’s dysregulation became so intense (riding his bike onto a freeway and hitting himself until he was black and blue) that we felt compelled to turn to western meds to help him and those around him stay safe. It was one of the hardest decisions I’ve ever had to make, but it has worked for him, enabling him to attend school and now his day program. Harrison’s speaking remains unreliable and echolalic, though he communicates a ton using a lot of other strategies. He can still become dysregulated and yell or stim a little extra, but mostly he’s a jokester who has a lot of hobbies: rock-climbing, listening to music, dancing, duck-diving in the ocean, archery, hiking, and getting his nails done.
When Lazlo experienced dysregulation at ages four, five, and six that manifested in meltdowns and eloping, we weren’t shocked, but they didn’t seem to be the same as Harrison. Lazlo could talk a little bit about how he felt, so we had more clues. We noticed that the mood swings associated with them felt bigger, with more intense sadness and rage. In the last few years, we had also been educating ourselves about our own nervous system regulation, altering our tone, proximity, and our own bodies’ sense of calm. We thought we were prepared using more co-regulation and CBD/THC gummies that had worked well for him since he was five.
We weren’t.
Emotional Tornados
Lazlo sometimes can’t tolerate simple requests like brushing his hair or having the car window rolled up—and no amount of old style (visual chart, bribing or firm tone) or new style (remaining quiet, getting on his level) will help him return to stasis. His dysregulated meltdowns are made worse or (if we are lucky) averted by different things, but they typically consist of running away, screaming, throwing, hitting, kicking or destroying property. They also include a flood of negative feelings he seems to drown in—about himself and others. We have learned to not take any of it personally, even the slap in the face, lying on the sidewalk in front of a Barnes and Noble writhing and screaming for someone to adopt him, or the foul name calling. The moods pass like weather. We just know he needs us and is stuck. While it used to be heartbreaking for me to navigate, I now regulate and attune to him without taking on his pain. I have to hold space.
What is PDA?
The US hasn’t officially added Pathological Demand Avoidance to the DSM but Australia, the UK, and other countries are moving forward with it as a diagnosable condition and subset of autism. This avoidance is called “pathological” because it interferes with their functioning at home or at school. Here are the main features of PDA:
Resisting ordinary demands
Extreme mood swings, led by a need to control
Surface sociability
Comfortable in role playing and pretending
Obsessive Behavior
Lazlo’s main areas are his need for autonomy and getting triggered by a lack of equality for himself or others. Like many kids with PDA, he doesn’t naturally respond to someone’s authority—he only works with people who feel like allies. If a teacher tries to use a firm tone or correct him or someone else in the class, it’s a no go.
How We Try to Address the PDA Challenges?
We lower as many unnecessary demands as possible and build trust through consistency, clear communication, and lots of physical touch and closeness. Lazlo needs to feel safe and secure, and that we are his allies. Here are some of our unique ways that most parents find hard to believe.
Avoid demand words like “must, now, or have to”
We use more statements, “ I wonder if we can”… or “let’s see if we can.”
Praise indirectly. Lazlo’s anxiety can get triggered by direct praise
Be consistent with non-negotiables and explain them.
As you can imagine, school has been tricky.
Here are more resources for PDA that could be helpful to you or people you know.
The tips at the end I think will be helpful. Sometimes when you’re in the moment it’s hard to stick to a different way of doing things especially when you’re used to a certain way of parenting but it’s not helpful in the long run. My granddaughter really needs something different than what I did with my kids and even my other grandkids but that’s ok she’s worth it. I need to grow and adapt for her. Which can be challenging sometimes we can be set in our ways. Thanks Kim
If more of us sought to understand one another the way you seek to understand your son, this world would transform. So beautiful to witness your unique, multifaceted, and deeply touching journey of motherhood, Kimberly. Thank you for sharing it with the world. I love you!