One of the very first, most thorough, special education assessments we received for Isla within a school district had this in the report:
“Isla does not display a hyper- or hypoactive reaction to sensory input or unusual interest in sensory aspects of the environment. Isla does not display any sensitivity to loud noises, textures, or her surroundings.”
Um. No.
I remember being shocked at this statement and that’s because this happened super early in the game for me before I really “knew” my stuff.
We had been to many birthday parties where my little girl had just shut down.
At first she would be excited about being somewhere new, but as kids ran in and screamed and shouted and played and ran and people talked and hit piñatas, she would hit the proverbial wall.
It would start with a signature scowl on her face and then she would sit close to me. All of a sudden she would become nonverbal and start to mumble and groan like she was uncomfortable.
But because she did not physically cover her ears to show the special education team that she was obviously bothered, that meant – per standard rubrics – she was not sensitive to loud noise or her surroundings.
The seventh characteristic of Pathological Demand Avoidance (PDA) involves sensory differences.
Just like all other children on the autism spectrum, children with PDA can have difficulty processing everyday sensory information and can also have balance or body awareness difficulties.
Let me insert a quick quote here from my book “Waiting for the Light Bulb”:
“All the kids got up and walked over to the special circle-time rug. All the kids, of course, except Isla. She scrambled off to another corner, and I followed her quickly and pretended we were walking to the sink together to wash her hands. “Good job Isla,” I said, pretending it had been her idea. I quickly cleaned her up and sent her to the rug. The circle-time rug had individual squares on it for each student, but Isla plopped down almost on a kid’s lap instead of on her own section. The kid, understandably annoyed, kind of squirmed, so Isla moved off his lap, but she was just so lost. Why was she so lost? I started to feel panicked. I am so ashamed to admit that I even considered picking up my cell phone and faking an “urgent” call from work just so I would not have to witness this anymore. Like everything else up to this point, I wanted to just pretend it wasn’t happening. My mind knew the truth, but my heart hadn’t caught up.”
Let’s cue the slideshow of Isla’s continued clumsiness.
Isla is super lanky so for years we assumed it was just awkwardness, but there have been so many times she has fallen off a chair when she seemed to be perfectly seated or missed steps up or down stairs or fell backwards because she couldn’t gauge whether the sofa was directly behind her or not. Oh, and her clothes. Let’s cue scene after scene of trying to get her to feel that her entire dress was in her tights and her booty was proudly revealing itself. And the times when she would have clothes and shoes on backward and not realize it.
Isla could have hair all over her face, a wedgie that was out of this world, or drool all over her chin and not feel a thing.
So let’s go over some basics.
When it comes to sensory issues, a person can be hypersensitive (over sensitive) or hyposensitive (under sensitive). Almost all children with autism and/or PDA are both hyper- and hypo- sensitive depending on the sensory input.
When someone is hypersensitive to something, also called a hyper-responder, he/she will more than likely try to avoid that particular stimuli and/or become agitated and overwhelmed if they aren’t able to escape it when they are exposed to it.
When someone is hyposensitive to something, also called a hypo-responder, he/she will seek out activities and sensations to help fill the void of what they feel is a sensory imbalance.
It is also possible that someone may be both a hypo-responder and a hyper-responder to the same thing, like a hug. A child may avoid a light touch but really seek out a firm deep hug which to them is more comfortable.
Based on what I have read and researched, Isla is considered a proprioceptive under-responder in some respects—she is very heavy footed and she is most comfortable with heavy blankets completely surrounding her while she sleeps—and an over-responder in others—she shows difficulty knowing where her body is in relation to space or to others just like the circle time rug scene.
Tactilely, she is a hypo-responder—since she was very small, she had and still has a very high threshold for pain. Isla also loves messy play and engages in messy play more frequently at home, especially when she is bored and knows she is not being watched closely.
She often empties entire bottles of soap or shampoo, or sometimes even glue, into her hands, on her bed, or anywhere else that she decides is a good place for a mess. She can spend a significant amount of time just feeling and squishing all of these substances in and through her hands and fingers, on her legs and feet and on the floor.
While this equates to a mountain of work for me at home, when I truly started to understand where Isla’s sensory overloads and/or sensory cravings were coming from, I was able to make changes to our lives to help my girl.
