When Isla turned two she only had three words, “momma” “dada” (which she said rarely) and “Hi”.
Isla said “Hi” all the time and in response to every question and comment. At first it was adorable, but after a few months I noticed the inappropriateness of it all. Take, for instance, a typical conversation with a family member or friend:
Friend: “Hi, Isla!”
Isla: “Hi.”
Friend: “How are you today, pretty girl?”
Isla: “Hi.”
Friend: “Yum, your food looks so good! Do you like bananas?”
Isla: “Hi.”
Friend: “Do you wanna go outside for a little bit? Do you wanna go play on the swings?”
Isla: “Hi.”
She said it on repeat. Monotone. Like a recording and you are pressing play over and over again.
I would try to guide her and explain that we only say “Hi” one time when we first see someone we know. I tried to teach her at least how to answer “Yes” and “No,” but I was largely unsuccessful.
The 5th characteristic of Pathological Demand Avoidance (PDA) is language delay, often with good degree of catch-up.
Some delay in speech and language development is a prominent characteristic that presents in the majority of children with PDA, and this language delay is usually dependent on their intellectual ability.
These children have a more socially acceptable use of eye contact and conversational timing than others on the autism spectrum.
This was just another reason why a diagnosis for Isla came so late in the game. I remember like it was yesterday being told she was not autistic because she had looked a person in the eye.
Some children even become fluent in using expressive language but can have problems with comprehension.
For example, there was a time when I would ask Isla a question and I could tell she would search my face and body language to determine how to answer.
So if I asked her, “Isla are you going to behave today?” She would answer, “No.” BUT she would be nodding her head as if signaling yes.
If I reworded the question, “Isla are you going to disobey again?” She would answer, “Yes.” BUT she would be shaking her head as if signaling no.
These children can have difficulty processing what they hear, which can lead to misunderstanding and disruption to the communication process. This can greatly contribute to their anxiety-driven behavior.
Then there were the brain mapping results.
When Isla was eight years old we opted for brain mapping. We were told that brain mapping would tell us whether appropriate areas of Isla’s brain were being stimulated depending on the source of information, and if she was using both sides of her brain to process information or just one.
It all gets very complicated, but because there were so many things Isla could do and so many things she could not do, we were still looking for the missing link at that point.
In the end, the physician who administered the exam told me that Isla’s brain was functioning normally WITH THE EXCEPTION of some lag time in how quickly Isla responded to someone else’s speech. All areas of her brain lit up when they were supposed to, but there were some delays in how fast they lit up which correlated with her delayed time to respond to the spoken word.
As Isla matured and started learning more words slowly, you could tell that Isla craved interaction but was not always tactful, so when she ran out of questions she would ask them all over again. She replaced “Hi” with “Whad ah you doin?” over and over and over again. Then it began to advance to repetitive conversational questioning.
For example, each day when we would get in the car I would give my kids a recap of the day ahead.
“OK, girlies, today is a fun day! First, we all have school, and I want you to remember the three things we do every day: do your best, obey your teachers, and be kind to others. Got it?
“Yes mom,” June would say, and then I’d continue.
“Then, when I pick you up from school, we have to get ready quickly to go to Daddy’s football game. We don’t want to be too late.”
After about two minutes of silence Isla would ask, “Mom, today Daddy’s game?”
“Yes, Isla,” I’d say.
“Mom, football?” she’d repeat.
“Yes, Isla.”
“Mom, you pick me up?”
“Yes, Isla.”
“Mom, today Daddy have game?” and so on and so on.
She wanted to keep the conversation going, but she didn’t know how, so she simply repeated.
You can imagine that, when she would do that to children her age, they would get frustrated fast and determine that she was “weird” or “annoying.” Then they would ignore her—or worse, make fun of her.
In regards to the “catch-up”, this DID happen and is still happening for Isla. She adds to her vocabulary every week it seems. Isla uses words that I never knew she was capable of saying or understanding—and using them in the correct context.
One day, when Isla was about nine years old, we were in the car, and she sneezed, and let’s just say she needed a tissue pronto. “Oh Isla I hope you aren’t getting sick,” I said.
“No, no, no, Mom. It allergies,” she replied.
Allergies? Wow. I had chronic allergies, so Isla had heard that word for years and observed what I was doing when I said it.
At nine years old she was starting to put complicated things like that together in her head.
Isla is now eleven years old. If you were to meet her today knowing ZERO about her, you would suspect NOTHING, until she opened her mouth to say her first word or sentence to you. Her speech is still delayed for her age and she lacks proper pronounciation and sentence structure BUT the girl is a CHATTER BOX.
There is hope guys. There is hope.
