Navigating the unseen: why Pervasive Drive for Autonomy Impacts body awareness in children and teens.

As parents, we often find ourselves marvelling at the unique intricacies of our children’s minds. For those of us raising children with Pervasive Drive for Autonomy (PDA), a profile on the autism spectrum, these intricacies can sometimes present in unexpected ways, particularly when it comes to body awareness. 

It’s a challenge that many of my friends and I have navigated, leading to moments of frustration that eventually give way to understanding and adaptation. I remember vividly when my daughter first started having her period. It was a constant source of stress, not because of the usual adolescent anxieties, but because she simply wouldn't feel if anything was leaking. We had so many accidents. I used to wonder if she was just being careless, but when we spoke about it, her explanation was eye-opening. "I don't know it's happening," she told me, “Until I feel myself sitting in a wet patch on my pants, and of course then it's too late." This immediately resonated with stories from many of my friends whose children have struggled with bedwetting or accidental daytime urination. It seems to be a common thread. 

For us, the solution was surprisingly simple: we set a timer on her watch to remind her when to go to the bathroom and check. And, of course, packing spare clothing became a non-negotiable part of her school bag. But it's not just in this area that we experience issues. My child will also never tell me she is sick until she is VERY sick. I used to get so frustrated, constantly prompting her, trying to figure out what was wrong. Then, I realised that she herself often does not even realise how bad she is feeling or even where the pain comes from. So now, when my child tells me she is sick, I pay attention. On Saturday, she casually mentioned that her ears really hurt and that she couldn't put pressure on them. A trip to the doctor later confirmed a raging ear infection. It was a stark reminder of just how disconnected she can be from her own physical sensations. 

So, why is it that children and teenagers with PDA are often so unaware of what’s happening within their own bodies? There are several contributing factors: Interoception Challenges: This is a big one. Interoception is our eighth sense, the ability to perceive and interpret internal bodily sensations such as hunger, thirst, pain, and temperature. 

Many individuals with autism, including those with a PDA profile, have difficulties with interoception. This means the signals from their bodies might be weak, delayed, or even misinterpreted, making it hard for them to notice subtle changes or discomfort.

 Focus on External Demands and Interests: Children and teens with PDA are often driven by a strong need for autonomy and can become deeply engrossed in their own interests and pursuits. Their attention is frequently directed outwards, towards managing demands or engaging in preferred activities, rather than inwards, towards their own physical state. 

Anxiety and Overwhelm: The pervasive drive for autonomy in PDA can stem from high anxiety levels. When a child is constantly navigating and avoiding perceived demands, their nervous system can be in a state of heightened alert. This can make it difficult to process internal bodily cues, as their system is already overloaded. 

Sensory Processing Differences: While interoception focuses on internal senses, broader sensory processing differences can also play a role. Some children with PDA might be hypersensitive to certain sensations, leading them to tune out others, or hyposensitive, meaning they require a stronger stimulus to register a sensation. This can impact their ability to notice things like bladder fullness or growing pain. 

Alexithymia: This is a difficulty in identifying and describing emotions. While not exclusively tied to physical sensations, alexithymia can contribute to a general lack of self-awareness, making it harder to connect physical discomfort with a particular feeling or need. As parents, dealing with these challenges requires a shift in perspective and a good dose of patience. Here are some effective strategies I've found, and that my friends have shared, that can make a real difference:

 Become a Body Detective: Instead of asking "Are you sick?", try more specific questions like "Do your ears hurt?" or "Does your tummy feel funny?" For younger children, pointing to body parts and asking, "How does this feel?" can be helpful. 

Visual Supports and Reminders: As we found with the period timer, visual aids can be incredibly effective. Setting alarms on watches or phones, creating visual schedules for bathroom breaks, or even using visual scales to rate pain can provide concrete cues that bypass the internal processing difficulties. 

Teach Body Cues (Explicitly): We often assume children will naturally learn to recognise hunger pangs or the feeling of a full bladder. For children with PDA, this may need to be taught explicitly. Describe what these sensations should feel like. "Your tummy might feel rumbling when you're hungry," or "Your bladder might feel full and tight when you need to go to the toilet." 

Lower Demands and Reduce Anxiety: A core principle of PDA is demand avoidance. When a child is under less pressure and feels more in control, their nervous system is calmer, and they may be more able to tune into their bodily signals. Creating a low-demand environment and offering choices whenever possible can indirectly support body awareness. 

Trust Their Cues (Even When Subtle): If your child mentions a slight discomfort, take it seriously. Even if it seems minor to you, it could be a significant sensation for them. Prompt investigation, as I learned with my daughter’s ear infection, can prevent minor issues from escalating. 

Emphasise Self-Care Tools: Encourage them to develop their own strategies. For my daughter, packing spare clothes and using the timer became her own way of managing. Empowering them with tools for self-management can reduce their anxiety and increase their sense of autonomy. 

Consult with Professionals: If you're concerned, a paediatrician or occupational therapist specializing in sensory processing or autism can offer invaluable guidance and strategies tailored to your child's specific needs. Raising a child with PDA is a journey of constant learning and adaptation. While the challenges of body awareness can be frustrating, understanding the underlying reasons and implementing proactive strategies can empower both parents and children to navigate these unseen landscapes with greater ease and confidence. It's about meeting them where they are and providing the support they need to connect with their own unique internal world.