Hey you! You made it all the way to the last characteristic of PDA!
The 8th and final characteristic of Pathological Demand Avoidance (PDA) is severe behavioral difficulties. Studies show that a large majority of children with PDA have great difficulty controlling and regulating emotions. This usually results in prolonged meltdowns, and it’s important to see those meltdowns as extreme anxiety or panic attacks and treat them appropriately.
Let’s talk about behavior vs emotion.
This my friends, was another big game-changer for me as a momma to a child with autism.
A behavior is something you can see and hear and count and measure and time. Behavior is NOT emotions. Behavior is how the emotion is expressed.
So if I asked you what is the biggest problem behavior you have with your child and you answered anger, you would be wrong.
Anger is not a behavior. Anger is an emotion and looks very different for different people.
Have you ever angry smiled? I have.
You know the one. It’s the smile where you squint your eyes a little, press your lips together, and force the corners of your mouth upward.
Do you know someone who laughs hysterically when they are anticipating pain like getting a shot? Well they aren’t happy are they? No. They are terrified and their body responds uniquely. You can’t equate laughter with happiness all the time.
If I asked you what is the biggest problem behavior you have with your child and you answered flopping, you would be correct. Flopping is a behavior. It can be seen and you can count how many times it happens.
So why is this important? Oh friends, this is so, so important. This is important as a parent and teacher to troubleshoot interventions (coming up in next post) and VERY important when communicating with teachers and administrators when your child is having behavior issues at school. This is important because without this knowledge you could be wildly misunderstanding your child like we did for years which prolongs appropriate HELP.
Let’s play out a school scenario so you see how this could be problematic.
Tommy is in 4th grade and has autism. He is in a self-contained class. Tommy flaps his hands during certain subjects of the day and it distracts the students next to him. Sometimes he extends his arms to flap so it physically hits (on accident) another student. The teacher is concerned for student safety and calls Tommy’s mom and dad and says that Tommy is very anxious during the day. He looks nervous and starts flapping and disturbs others. So the parents are concerned and sad. It is the WORST feeling in the world to know your child is hurting others on accident or not and it totally SUCKS to feel so helpless about something like this. I mean what should the parents do? Talk to Tommy? Yeah, no. (Talking it out was not effective for us at all.) So they take Tommy to the pediatrician and tell the doctor Tommy is anxious and hurting others. So they put Tommy on medication to help with anxiety. This medication makes Tommy’s stomach hurt many times during the day and he starts to have other behavioral difficulties because he feels so uncomfortable most of the day. The medication also makes him sleepy and so he feels groggy and not himself which also presents as more behavior problems. This results in Tommy having to be restrained often, more ARDs to change IEP and BIPs and administration time and attention and sad, frustrated parents and overwhelmed teachers and ALL BECAUSE EVERYONE ASSUMES TOMMY IS ANXIOUS.
Let’s try this again.
Tommy is in 4th grade and has autism. He is in a self-contained class. Tommy flaps his hands during certain subjects of the day and it distracts the students next to him. Sometimes he extends his arms to flap so it physically hits (on accident) another student. The teacher is concerned for student safety and calls Tommy’s mom and dad and says that Tommy is very anxious during the day. He looks nervous and starts flapping and disturbs others. So the parents are concerned and sad. It is the WORST feeling in the world to know your child is hurting others on accident or not and it totally SUCKS to feel so helpless about something like this. BUT Tommy’s parents read this series (*winky face) and they know that anxiety is not a behavior. So they ask the teacher to keep a small log the following week of the times of the day when Tommy flaps the most and during which subjects. The next week Tommy’s teacher calls his parents and says her log shows that Tommy flaps the most during any subject where they have to use a worksheet and pencil which is math and writing. All of the other activities that are hands on, Tommy has no issues with flapping. So, Tommy’s teacher and parents agree that Tommy can do math on an iPad from now on and right before writing assignments Tommy has the choice to sit on a bean bag chair or at a cool standing desk away from other students so he can practice writing but flap if he needs to without hurting others.
No crying, sad parents. No overwhelmed teacher. No pediatrician. No new medications. No side effects. No stomachaches. No new ARDs. No administration involvement needed. AND now the teacher and parents feel empowered and connected and like partners in this journey to help Tommy.
This is why defining and describing behavior is so important.
Here is a master list of all of the behaviors I can think of that we have experienced with Isla:
Biting
Hitting
Tearing items (with hands or teeth)
Flopping
Urinating on herself (purposefully)
Kicking
Shouting mean words (ex. “I don’t like you.”)
Pulling hair
Throwing items (across a room or off a desk)
Disrobing
Skin picking
Crying
Repeating requests
Groaning/moaning
As of the last year, the list now looks like this:
Biting
Hitting
Tearing items (with hands or teeth)
Flopping
Urinating on herself
Kicking
Shouting mean words (ex. I don’t like you)
Pulling hair
Throwing items
Disrobing
Skin picking
Crying
Repeating requests
Groaning/moaning
As Isla is growing and hormonal changes are coming into play, much of this list happens rarely with the exception of crying and repeating requests.
I don’t have all the answers my friends, but I do know what has not worked and what has worked for our family.
Stay tuned.
