PDA Partner

The Side Door?

Before discovering PDA, I would speak to my daughter in a way that was upsetting to her. It was not, however, in an unusual or unkind manner. For example, I would look at her and say, “Go brush your teeth please”, “Come over to the table, your breakfast is ready”, “Please get your shoes on, it’s time for school”. I have now come to understand that, however innocent these statements may seem to most of us, they can ignite a great deal of anxiety in my PDA daughter. Why? Simply put – they’re just too direct. In fact, it would not be an exaggeration to say that they may come as a full-on threat to my daughter’s sense of well-being.

These types of direct comments are what I refer to as Front Door communication. When my PDA daughter is feeling safe and the anxieties assaulting her mind are at bay, using Front Door communication is fine. They are received as “safe” comments. However, when she’s battling anxious thoughts and feelings, these direct Front Door approaches unquestionably hold the power to amp up her existing anxiety to massive levels.

For example, years ago I would walk into my daughter’s bedroom in the morning, approach her and say, “Good morning honey, it’s time for you to get up”. I would leave the room and return later only to find that she was still in bed. Not unusual you say? I agree. It’s not at all unusual to find our neurotypical children hibernating under the bed covers, playing possum in response to the thought of getting up. What is unusual, however, is the extreme degree to which my neurodivergent PDA daughter would fight the process – day after day, year after year, regardless of the strategies I tried to get her moving. It just wasn’t happening.

Returning to her room while still using the Front door approach to get her moving I would go over to the bed and say, “Come on, honey. It’s time to get up”. In reply, she would say, “I can’t”. I’d think to myself, “Oh no. Not again. Not this morning. I really, really need to get going!” Determined to get her up and out of bed I would remind myself that I am the parent, and she is the child. If for no other reason than that, she needed to get out of bed. After making 3 or 4 attempts to which I'd only hear her reply," I can't", I'd usually say, “Gwen, you CAN get up. You’re just CHOOSING not to. Let’s go. We need to leave in 20 minutes”. To which she would again reply, “I can’t”. Ughhh. Back and forth, and back and forth we would go…both of us ultimately feeling defeated and exhausted. Clearly, something had to change.

So, changed I tried. Over the years I attempted countless approaches. With each one I followed the guidelines: Maintain consistency; Give ample time for change; Look for and acknowledge successes however small they may be. I also kept in mind what many professionals would emphasize, “Things may get worse before they get better”. Some of the approaches had short-term success but, inevitably, each one became ineffective. In fact, over time they actually made matters worse.

The strategies included (but not limited to): Having conversations with my daughter about the situation when she was calm and receptive, using positive reinforcements (immediate and delayed rewards, sticker charts, praise, words of encouragement), using negative reinforcements (giving time outs, losing privileges, implementing consequences), utilizing both applied and cognitive behavior therapies, setting an alarm, setting 2 alarms, using visual supports, programming Alexa to play music, turning on the tv, making the environment uncomfortable by opening a window or pulling off the covers, wrestling her out of bed, and yes…. even spanking. Yet, regardless of the strategy, not one of those offered positive change. Countless times I questioned myself, “What do I need to do to get her up?? Why isn’t she changing?".

It took a full 17 years before learning there existed such a thing as PDA (Pathological Demand Avoidance) Autism. There it was. Bingo. The “Ah-ha!” moment that finally gave definition to what we had been struggling with all these years. I was beyond excited to learn more about this unique profile of autism and wasted no time in learning more.

Jumping into educational courses and podcasts I learned so much. It was through these resources along with the incredibly insightful personal testimonies of PDAers (who can voice their experiences) that I found myself confronted with a very different type of existence. What evolved for me was a vision as to how my daughter felt and what she thought every day of her life. I was stepping into her world. And what I discovered was sobering.

When she was told it was time to get up her thoughts would look something like this: “Mom keeps saying it’s time to get up. I can’t. I can’t do it. When I pull the covers off, what will the air feel like on my skin? I don’t want my feet to touch the carpet. If I get up, I will have to go to the bathroom. Oh no, getting up means getting dressed. Then I’m supposed to leave my room. I can’t. I can’t! Today is a school day. Noooo!!…the people…the sounds. I know I’m different than everybody. Even if they say it’s ok, it feels different. The teachers will ask me to do things that my brain just won’t let me do sometimes! I mean, I know HOW to do them, but it’s weird… it's just like I CAN’T sometimes…like I’m paralyzed! My mom and my teachers say, “We know you can do this Gwen. You’re smart”, or “Gwen, we know you can do this. You just did it yesterday”. They’ll think I’m being naughty. They’ll think I’m being stubborn. It’s just that I can’t! I don’t know why! Why doesn’t anyone understand me?? Maybe I am bad. I don’t think I belong here”.

Wow…and she hasn’t even gotten out of bed yet. While she’s remaining calm and masking on the outside, her PDA anxiety still dominates on the inside. Even if she can muster getting out of bed, it’s still in control when she is asked to brush her teeth. It’s still there when she’s told to put on her shoes. It grows even greater when I say, “We’re leaving in five minutes”. It hasn’t suddenly disappeared when she walks into school or when a worksheet is placed in front of her (even if she seems happy to see her friends), or when it’s time to transition to another class. It’s overpowering when she’s asked to wash her hands, go to gym class, go shopping, put on her pajamas, or climb into bed. It’s ever present, every day, all day. With each demand (expectation, request) an instinctive self-preservation response follows. Sometimes it looks like masking and shutting down…only to have outbursts later. Sometimes it looks like fight or flight. Regardless of how it's displayed, there always exists some form of resistance.

A PDAers resistance is their self-protection. Protection from experiencing even greater levels of anxiety than they already feel. It makes no difference how non-threatening the demand or request may seem to us because it’s what the PDAer feels that is important. It feels to them like a base threat to their safety, and demands them to self-protect. It is not a choice. This instinctive self-protective response is an important characteristic that distinguishes PDA from the more familiar “classic autism”.

It became imperative (yes, imperative) for me to learn a new form of communication with my daughter. Was it Einstein who said insanity is doing the same thing repeatedly and expecting different outcomes? Or was that Dr. Phil, lol. Regardless, I found myself asking, “If I don’t change the way I’ve always interacted with her, then how can we move forward in a truly positive way?”. Through the process of learning about PDA, I kept seeing a type of communication being encouraged by parents and professionals. For ease of reference, I simply gave it the name "Side Door".

The Side Door is all about indirect communication. It becomes really important to use when my daughter is struggling. It means intentionally not making eye contact or positioning my body in front of her. It means intentionally rephrasing how I say something, and definitely keeping my voice and attitude benign. The Side Door is very relaxed, almost to the point of being nonchalant. It provides the PDAer with two critical elements of communication: low demand and autonomy. Without these you will not pass “Go”.

Stepping back to the example of getting my daughter out of bed in the morning, I would now approach her using the Side Door by saying, “Good morning. The clothes are at the bottom of the bed.” And then leave the room. I don’t touch her, look at her, open the blinds, turn on the tv. Nothing. I don’t say “It’s time for you to…” or “You need to…”, I simply let her know the clothes are there and walk out. Now, it becomes essential to give her time. Probably more time than what feels natural or comfortable to most of us as parents. However, if given enough time, this strategy alone has proven extremely effective.

If a second visit to her room is needed, I continue using the Side Door by asking, “Would you like any help, honey?”. My voice is not tense or impatient. Nor is my body language. I generally find something else to do in the room as opposed to standing by the bed talking directly to her or looking at her with anticipation. If she doesn’t need help, I lightly say, “Ok” as a form of acceptance and add, “Thank you for trying to get dressed, honey” and I walk out of the room. Thanking her in advance can be extremely helpful. If I say it with a clearly peaceful intent, she will receive my thanks as a “You’ve got this, honey”. Most often, she gets up and successfully gets herself around.

When, on occasion, a third trip is required to the bedroom I realize that my daughter is truly struggling. Sitting on the side of the bed (not staring at her), I’ll ask, “Is it feeling especially hard to get up this morning?”. If she says yes, I’ll respond, “I’m sorry. Can I do anything to help?”. Because I’ve been using this approach for a while, she is now more willing to let me know how I can help. It wasn’t that way at first.

When she’s allowing me to help, she might say, “I need help getting dressed”. Now, do I know she knows how to get dressed? Yes. Does she know she knows how to get dressed? Yes. Does she understand why she feels anxious about it or feels like “I can’t”? No. So I help her get dressed. It’s INCREDIBLY important that I do so without irritation, judgement, or resentment. If I give off that negative vibe or impression, my daughter will feel it and immediately change course. Pushbacks and verbal altercations will ensue because now she feels the threat of My anxiety, in addition to her own anxiety. And as a PDAer, she cannot risk taking on anything additional.

If she answers “no” to needing help, I share with her to not worry; she can take her time. These reassuring comments alone can be powerful as she feels the pressure is taken off. It also means the morning is likely look very different. We may not remain on schedule. But if an additional hour is spent healing and moving towards a productive place verses arguing, creating a bigger relational gap, and being totally unproductive, I’ll invest that time in the former.

What I’ve shared is one example of an approach I had to learn in order to help my daughter. In the coming entries I’d like to share common Side Door approaches I’ve personally found very helpful.
Coming soon I’d also like to address a really important question I struggled with both before and after discovering PDA: “Am I being manipulated?”.

Blessings to you all and may Peace be yours!!