By following the principles of clearing the brush, you are beginning the amazing process of relearning your child. In this step, I would encourage you to think of yourself as a detective or researcher collecting subtle data, that perhaps you didn’t notice when you still viewed your child through the neurotypical lens.
First and foremost, it is helpful to remember that behavior is communication. I imagine if you are reading this, your child has likely been communicating through difficult behavior – the result of her fight or flight response. Behaviors like throwing things, running from you, hitting you, and screaming in your face, do not indicate that she is "bad" or "poorly behaved." Rather, they indicate that your child has reached the threshold of her anxiety tolerance, her rational brain has gone "offline" and her body is panicking. Remember the reframe.
With PDA children, the "outward behavior" that indicates they have reached their threshold and are panicking are the following: fight, flight, or freeze. Some children may use more than one of these behaviors, depending on the situation.
My son Cooper most often responds with "flight" by fleeing, hiding, cowering, and looking for an escape. As his anxiety rises, I sometimes notice he begins to move his body away from me. This might be subtle, as he starts to fold in on himself, turn his body and trunk away from me, turn his gaze downward, or to push his body into the couch or back against a wall. Other times it is more obvious, when he runs from the room, hides under a blanket, rolls down a window in a car or plays with the door locks. If I come too close to him at these times, he will then respond with "fight," by kicking, hitting, or screaming at me.
These behaviors are all communicating the same message -- my son is no longer able to rationally process language or “hear” what I am saying.
If your child has more of a "fight" profile, they may more immediately communicate their panic by hitting, kicking, spitting, or throwing things at no particular target, or attacking a sibling or parent, physically or verbally. Or, if your child primarily has a “freeze” profile, I suggest reading more about it here, in a blog written by a mother in the United Kingdom whose two daughters present in this way.
No matter their method of communicating, what's most important to remember is that this behavior is not under your child’s control and is in fact, part and parcel to her disability. And your task in these moments is de-escalate and help them regulate. When Cooper's anxiety is rising, I have learned not to approach him too quickly, move his body, or prevent him from doing something (unless it is dangerous). Instead, I muster up all of my energy and strength, and defy my own anxiety to shower him with love, understanding, patience, and peace.
The goal is that over time our children's anxiety reduces enough that they are not in a near constant state of fight or flight, because only then can we see what else she is communicating about her internal world and how her brain works. But once the constant fight or flight behavior subsides, and you have longer periods of time between meltdowns, outbursts, and dysregulated behavior, you will hopefully start to observe things you couldn’t see before because it was obscured and overshadowed by outward panic. Now is the time to observe -- again, without judging yourself or judging your child – what is actually going on beneath the surface.
My main recommendation for this principle is to remember to let go of a sole reliance on verbal communication and words, and really try to understand what your child is communicating through other indicators, such as behavior, movement, body language, facial expression, and the sounds she makes. These indicators may reveal that other things are going on beneath the surface that you did not know about -- perhaps that she is bothered by the noise of the ceiling fan, or very nervous about a future outing you've mentioned to her, but not fully talked through. As you parse these details of your child's inner experience, you may be surprised at what you find and realize how much she has been confronting an intensely anxiety-provoking existence.
Before Cooper’s overall anxiety – and thus behavioral challenges – started to reduce, I would have sworn on my life the following things: That he did not have sensory issues, he did not have social communication difficulties, and that he wasn’t Autistic.
Now over a year and half later, I am certain the opposite of all three statements is true. In fact, they are integral parts of his being and the premise upon which I shape the accommodations in our household, as well as my communication with him. I'll provide more detail on all three below.
First -- sensory issues. Many PDA children are sensory seekers – meaning they like to feel intense input and pressure on their bodies, through crashing, swinging, jumping, and even hitting and tackling. This type of sensory seeking can easily be confused as misbehavior, especially if they are using other bodies – of their friends, their siblings, their parents – to receive that intense input.
In the case of my son, he experiences under-responsiveness in his vestibular and proprioceptive systems and this results in extreme sensory seeking. The fact that he has trouble feeling where his body is in space means he craves feeling the sensation of deep pressure and full, deep envelopment. He has poor core and postural control and so -- to the extent that he is allowed -- will use another's body as a proxy for his own, as a stand-in for his lack of balance and body stability.
Here the observable clues of this sensory issue were things like constant leaning on me, bumping into me or his brother or a wall, especially when dysregulated, punching or hitting me on my stomach or butt for sensory input, or climbing on the back of the couch and then jumping off and slamming onto the floor repetitively. I had to learn to see these not as behavioral problems, but rather as an outgrowth of sensory needs that weren’t being met. By understanding him through this lens, I was able to see clearly the need for occupational therapy, for creating a safe “crash” space in the basement, and redirecting his need for sensory input away from my own body in a loving and gentle way.
Second - social communication. It is often easy to overlook the social communication difficulties of a PDA child because they are subtle. Compared to the classic presentation of Autism, PDA children can appear very socially engaged, making good eye contact, and with somewhat typical verbal language development. However, compared to a neurotypical child, they do carry out social communication differently. This may be even more challenging to notice if your child masks (i.e. hides) his challenges when around peers or in certain contexts.
Cooper is among the children with PDA who mask -- not all do -- and before we cleared the brush and understood this, it created one of the most confusing aspects of parenting him. He seemed “fine” in a school setting, but was dysregulated with really extreme behavioral challenges at home. This is because he was “masking” at school – he still does -- because he cares about what his friends think of him. And the task of overriding his demand avoidance and trying to present as typical put so much pressure and stress on his system that he would come home and explode. ("Masking," and the Autistic burnout that can result from this, are topics you can read more about here, from the perspective of an Autistic individual).
I had assumed Cooper was completely capable of social communication, because he had friends at school and seemed to recognize emotions in others. The problem, however, came at a different level of social communication – of adjusting his own behavior in response to others’ emotions and understanding nuance and abstraction in verbal communication.
Some of the observable indicators of distinct social communication are subtle. For example, you might notice that when asking your child a question, he often doesn’t answer you. Or you may have to repeat yourself and he still may respond with, “I don’t know” or “I don’t want to talk about it.” This is not defiance in the case of the PDA child. Rather, there are two very good brain-wiring reasons for this: the demand of being asked to respond, and also slow auditory processing. Both of which are the case with my son Cooper.
Like many Autistic children, Cooper has trouble keeping up with the flow of verbal conversation, and often takes longer to process what I have said. I noticed this in the long pauses between our sentences and in his furrowed brow as we conversed. When I started using declarative language, and giving more time for him to respond, he started saying things like “I didn’t hear you” or “I didn’t understand,” which were clues that he was missing a lot more of verbal communication than I originally realized.
Now when I interact with my son, I sometimes see him struggle with the abstraction of verbal language. It is almost like it is not his mother tongue. He often forgets words, uses them out of context, and has a lot of trouble remembering the names of kids in his Kindergarten class, even as we near the spring of the school year. In my role as "detective," I also started noticing that rather than completely zoning out on the ipad, he was actually “studying” kids playing in Youtube videos, and would then repeat the exact phrases of the children, almost like he was practicing how to engage socially.
Third - Autism. Ironically, the more Cooper's behavior improves, the clearer it is to me that he is Autistic. As we moved through this process of clearing the brush, there were times when I felt like my chest was contracting, because I thought to myself, Oh my God, by using this approach, I am making my son Autistic when he wasn’t before. The truth of the matter was, he was always who he was, I just hadn’t seen it. I hadn't understood it or created spaces for him to feel comfortable expressing himself fully and without my judgement.
As scary as this is to read for a parent, let me just offer you my perspective: If over time your child appears "more Autistic," I would argue that this is actually a really good sign. The fact that you are creating a space where your child can be naturally herself, means you are doing a good job of establishing trust, not that you are “making” her Autistic by “permitting” these behaviors. These are the clues that she feels comfortable with and around you, so she lets her body move in the ways it naturally needs to move, or makes sounds that express how she truly feels, rather than stifling them and in turn, stifling herself.
In other words, you are on the right path, as hard as it is, but you are doing a great job for your child and your family!