Reframe

Now that you have taken a pause, I want to invite you to try out a few thought exercises. If this feels too scary and raw right now, simply skip to the next section, Clearing the Brush.

Let's start with some thought exercises:

First, ask yourself, without judgement,

What would I do if this challenging behavior was not a reflection of my child’s will, temperament, or intention, but rather is the result of panic attacks?

Your answer is probably that you would want to help your child in whatever way possible and to provide unconditional support. You would likely want to assure him that he is safe and that no matter what happens, no matter how his body moves, what he throws across the room, what he screams in your face, or how embarrassingly out-of-control his behavior seems, that it is OK. That you will help him get through it.

Although you would be willing to do anything to help a child suffering a panic attack, you may also be thinking, But my child doesn’t have panic attacks, he has behavioral problems. It might seem that, rather than suffering from anxiety, your child is aggressive, stubborn, assertive, overly-confident, controlling, or out-of-control. Perhaps rather than crying or expressing fear, he runs away, verbally attacks you or his siblings, throws things, or screams.

Experiences like this with your child can provoke initial resistance to the "anxiety" frame, and I completely understand that. I felt that too. However, it helps to remember that part of our resistance is simply an outgrowth of our conventional understanding of what anxiety “looks like” to the outside observer. It is important to recognize that the behaviors listed above are the indicators of anxiety for the PDA child. They are not behaviors under the control of the child, but rather clues that your child is in fight or flight mode and having a panic attack.

---

Now, ask yourself, without judgement,

What would I do if this challenging behavior was not a reflection of my child’s will, temperament, or intention, but was actually an indicator of trauma?

As you read this, you might ask yourself, Traumatized by what? I had the exact same question with Cooper and, truth be told, I was offended by it. When I scanned my motherhood accomplishments, I recounted that I had never raised a hand to him, had barely even raised my voice in the course of his young life, and had provided him with everything he could possibly need or want. For the first four years of his life, he had the undivided attention of me and his father, who are happily married. When I played with him, I didn’t even look at my cell phone, just so he knew that I was completely with him in the moment. I cooked all organic food, set up art projects, took him to the zoo, to the park, to see fountains, and to pick pumpkins and apples. I simply couldn’t fathom what could have traumatized him.

However, now that I understand PDA, I would assert that trauma is at the very foundation of the PDA experience – for both children and parents -- and is especially acute in the unfortunately frequent scenario in which PDA is not recognized or supported comprehensively.

For the child, this trauma is a two-sided coin.

First, because of the way the PDA brain is wired, things that aren’t objectively dangerous – teeth brushing, putting on clothes, eating, responding to a question – are registered as if they were mortal threats. The body goes into fight, flight, or freeze, which is a physiological response to perceived danger and completely out of a person’s control. The result is that the child is nearly constantly being triggered by things that seem mundane and innocuous to the neurotypical brain. They may be able to hide the fact that they are having such a physiological response, but each time they do so stress accumulates in their system until they reach a breaking point, which could ultimately be triggered by something seemingly trivial that does not correlate with the intensity of the resulting meltdown.

Second, when anyone's fight or flight response is triggered repetitively, they experience trauma, especially if they feel that they don't have control over what triggers them. In the cases of PDA children, they are often triggered by the requests and expectations of their parents, who then reprimand them (sometimes implicitly) when they cannot meet those expectations, or have a meltdown that the parents consider behavioral - a "tantrum." Thus the child is left feeling they cannot keep their bodies safe and in control, nor can they please their parents (which is the goal of nearly every child nearly all the time). This is trauma. And I say this with no judgement, as I can now recognize and accept that some of my actions traumatized my son.

---

Finally, ask yourself, without judgment,

What would I do if this challenging behavior was not a reflection of my child’s will, temperament, or intention, but rather the result of an underlying disability that I don’t know about yet?

You likely would want to help, support, and accommodate that child. For example, if your child were diabetic, you would monitor insulin levels. If she was in a wheelchair, you would set up ramps in the home and put things at waist level, instead of out of reach. If they were deaf, you would likely learn sign language.

Personally, it has taken me a while to come to terms with, and embrace, the disability frame. As difficult as this is to accept, however, I find it extremely important because it helps me commit over and over to the sacrifices and tradeoffs that I need to make to help my son thrive.

In my case, I think about monitoring my son’s stress and anxiety levels throughout the day, like I would a diabetic son’s blood sugar levels. During the course of a day, I adjust my expectations and my demands of him, according to his overall level of regulation and anxiety, in the same way I would adjust his dietary intake to regulate his blood sugar. I plan on helping him with this regulation piece for as long as it takes - until he is old enough and equipped with enough knowledge and experience to do it himself.

Similarly, although he is not in a wheelchair, we still make physical accommodations for him, due to sensory issues. Among other things, we buy special soft clothing, we keep the lights off in the living room because it bothers his eyes, we bought him a motorized scooter as a tool to help him motivate to get outside, and he uses noise-cancelling headphones. Additionally, we have crash pads in the basement, swings in the backyard, a trampoline, and we are building him a Lycra swing in the basement. These are all – in my mind – necessary accommodations so that his body feels good and so that he can access things like eating, learning, and hygiene.

Finally, like a mother of a deaf child who is becoming fluent in sign language, I am learning to become more fluent in Autism. In the case of Cooper, who is quite verbal, I am learning that he still prefers to communicate non-verbally in many ways. I understand his symbols and sounds, and I have figured out ways to “read him” that I wouldn’t have without this lens. I no longer try and “cure” or “fix” the things that are simply a reflection of different brain wiring, like when he smashes his hand loudly on the trash can as he runs by on his way to the bathroom because he is a sensory seeker, or groans loudly as he climbs on the back of the couch while watching TV, all without clothes on. Ultimately, these are not behaviors to extinguish, but rather ways he expresses and regulates himself that are simply outside of the bell curve of what most kids do at his age.

When I first started learning about PDA and Autism, I was so worn down and frustrated with my child, that I would sometimes tell close friends that if I could, I would cut off one of my own fingers without anesthesia to make his PDA go away. I am admitting this difficult secret here because I want to honor other PDA moms and dads who feel -- or who have felt -- this way. But I also want to say now, I truly don’t feel that way. Now, I am beginning to understand that Autism is a different language and culture, not better or worse than the neurotypical one/s. It is also an invisible disability – which sometimes makes it harder for others around you to get on board with this framing – and it is a social disability because the world is not set up to accommodate or support Autistic individuals.

As hard as this section might be to read, I hope that once you digest what I am saying, you will find it freeing and not disheartening. I hope that you will internalize the fact that what you have experienced thus far with your child is not your fault. It is also not your child’s fault. She is not a bad kid and you are not a bad parent. The truth is that you have both simply been living with a disability you didn’t know about, without adequate support for the family, and without making necessary lifestyle changes to accommodate your child.

---