Picking up on PDA early
I’ve known about PDA , or Pathological Demand Avoidance for 5 years, but I’ve lived it my whole life. When you have a baby or toddler, there are indicators to look for, but they are not all widely known and they are not universal. Seeing one of these traits does not mean your child is autistic or has PDA. The ways in which these get diagnosed is by having a critical mass of traits that interfere with or pose big enough issues for them to be remarked upon. Almost all of the behaviors exhibited at times by PDAers are just typical human behaviors, but they come at different times, in response to unexpected triggers and with greater intensity. The journey of finding these triggers and figuring them out can be overwhelming because PDA does not present consistently, but rather based on capacity. Some days I am not disabled at all. Others I am incapable of doing what many expect from a person. This lack of consistency leads many parents to not trust themselves or the notion their child needs help. It can appear like many PDAers are willfully causing issues for others, instead of being incapable of responding as expected or desired. Understanding the lack of choice in many PDA behaviors is hugely important towards helping your child or yourself learn to live with PDA.
I put together this list of things I remember being harder than what I expected. These are all based on my personal experience as a person with PDA and as a parent to two PDAers.
1. Struggle with and fussy/difficult during any time of transitions. Babies and toddlers might cry a lot during the going to sleep and waking up process. Sleep has transitions we don’t choose and that’s often forgotten about. Short naps as babies, difficulty sleeping in general. My sone never took long naps, my daughter would cry for 30-45 minutes after waking.
2. Getting them to do anything/go anywhere is super hard, once they are doing it they seem fine though. This is part of the transition thing but also demand of changing gears/participating. This looks like all sorts of big emotions around even good things like drama at the ice cream shop. You might find yourself saying “even when I try to treat you there is a problem…” like they come up with reasons not to just let it be easy. This is a sign of not understanding the root of their avoidance.
3. Huge reactions that can feel aggressive and seem to come out of nowhere to small requests. My first would spit in my face when asked to clean up at age 2-3. His nervous system was set to fight when he felt his autonomy was challenged.
4. Needing food all the time or seemingly never at all. Extreme relationship with “needing” anything and difficulty admitting needs.
5. Having a love-hate/complicated relationship with being perceived/getting attention. Some PDAer’s need attention or validation or feedback constantly. My son needs a witness and co-regulator almost at all times. It’s almost like if he isn’t witnessed he isn’t sure he’s there. But he also hates “standing out,” and being extra perceived. It feels like an existential safety drive need to remain validated but not noticed. My daughter is more independent but also has a bigger imaginative play habit and vivid internal visualizations. She often feels the need to hide and escape perception. As a child, I would hide in large groups and scream “Don’t look at me!” This could look like a lot of different behaviors depending on the nervous system response closest to the surface. This parallels ADHD a lot in my experience. Needing a witness and to know you’re ok more than others, sensitivity to rejection etc.
6. Constant counterpointing or needing to have the last word. Just like constant challenge to what other people say, even if not aggressive. Almost like someone else declaring something is a threat if you don’t also get to declare. It feels like a need to equalize always.
7. Seemingly threatened by the smallest thing, upset when others have more, deep insecurity that there won’t be enough for them. Within PDA comes a core feeling that maybe our needs won’t be met because of too many other people having needs. There is a component of seeing others as competition for resources that feels very primitive.
8. Collecting/hoarding, behavior that demonstrates an increased need for safety-lots of stuffies, treasure, younger kids wanting “grownup things” like bank accounts and credit cards-they perceive security in the agency. There is not safety in numbers for most PDAers but there is safety in objects.
9. Peer to peer relationships are not natural/innate for many PDAers. Some PDA Kids prefer to be around adults more than peers-pda kids struggle to see social hierarchies in which they aren’t on top so they often are perceived as bossy or little grownups. They may attach themselves to those they perceive as being at the top of the hierarchy, but more likely they will challenge the existence of the hierarchy and feel misunderstood or villified for it. This can become a self fulfilling prophecy. They may also often stand up for those they see as more oppressed, even if gets them in trouble. If a parent is undiagnosed PDA, there is a strong chance in my opinion that the PDA child may therefore be extra dominant at school because they are not afforded as much autonomy at home.
10. Refusing bodily demands like going to the bathroom and sleeping and eating. All of these behaviors may show up only during times of stress as they are last resort grasps at autonomy when most of it has been stripped. As a child I refused to pass bowel movements and was hospitalized more than once for extended stays because of it. My daughter will also withhold. My son resents having to use the bathroom before bed. They both will not stop an activity they are enjoying or focused on in order to meet bodily demands. The body will come last for most PDAers.
12. I internalized a lot of my life as a way of never showing vulnerability and was an over achieving perfectionist until I’d explode and have to find new friends or job. Adults who seem talented but can’t stay employed or in relationships because they think they know better than the boss…that’d be me…I am not a good team player, group projects were always hard. Acknowledging that working with others can bring up our threat response should not be used to create shame in PDAers. We cannot help that we feel unsafe amongst others often.
The images accompanying this post were taken during some of the lower points of early parenting when I was really struggling to figure out how to relate to my kids and before I understood our PDA. They depict very real emotions and struggles of motherhood, unfiltered.