I’ve been reminded an awful lot lately that autism is a developmental disorder. Yes, we all know that, but we know it as one blurry word, don’t we? Autismisadevelopmentaldisorder.
Sometimes we miss the most important part.
Autism is a developmental DIS-order. Development happens IN A DIFFERENT WAY than the typical order of business.
‘A’ does not necessarily lead to ‘B’. Sometimes, ‘A’ leads to ‘F’, then back through ‘C’ and ‘D’ long before ‘B’ shows up. Sometimes ‘B’ doesn’t show up at all, but ‘R’ does and turns out to be a doozy.
Our kids development is not delayed. It is disordered – differently ordered.
For me, this has been a HUGELY important distinction. I think we lose a lot waiting for our children to ‘catch up’ to their peers. One can’t catch up to someone who is walking on a different road. It simply doesn’t work that way.
But God, our kids DO change and grow and learn and develop, don’t they? IN THEIR OWN WAY, IN THEIR OWN TIME, WHEN THEY ARE READY.
The following is from a post I’d written in August of 2009. It says it all. Which is good, because I’m out of time. 🙂
I walked around Brooke’s room tidying things up for bed. The musical instruments had quieted their songs for the night and were put back in their wooden crate one by one. The books promised to keep their stories to themselves and settled into their places side by side on the shelf. The room was bathed in the soft light of the bed-side lamp. All was quiet, but for the freshly scrubbed little girl chattering away on the bed.
“OK, friends,” said Pablo the blue penguin, “You would all line up for picture time.”
Slender little hands deftly moved the ‘friends’ into place. They lined up along the pillow and presumably smiled.
“OK now. You would all say, ‘Cheese’!”
She stretched Pablo’s little arm as far as she could up to his face. “Say ‘Cheese’!”
With a “Click!” the picture was taken.
“Good job, friends,” said Pablo. “You said Cheese!”
I tried to wrangle the Backyardigan friends for bed, but she wasn’t having it. “Oh, no. They would stay with me,” I was told in no uncertain terms. I settled onto my knees next to the bed as if in prayer and watched.
Uniqua was the first to go. She slid down the pillow with a “Wheee!” followed by an, “Uh oh! I bumped my head. It hurts me very much!” Her voice was deep, even slightly raspy, just like on TV.
Tyrone came quickly to the rescue, air-lifted into the scene by a tiny arm. “Oh no. Uniqua, are you OK?” A deeper voice, appropriately boyish. He leaned in to check on his friend.
“I am not OK,” replied Uniqua. “I bumped my head and it hurts me very much.”
“Oh no! I will give you a hug, Uniqua,” said a very concerned Tyrone.
Once they were securely intertwined, they were set aside – apparently to hug it out.
Tasha sprung into action from her place at the top of the pillow. She flew down with a flourish and a twist. “Ow!” she cried out. “I bumped my knee and it’s ba-leeeeding!”
Pablo swooped in. “Do you want me to take the blood out?” he asked.
“Yes, please,” she answered politely. Gotta love Tasha.
A pretend band-aid and a hug sent them on their way.
I don’t know how to describe everything going through my head or my heart while I watched this scene unfold.
“She came to us with absolutely no functional play skills.”
Her integrated preschool teacher. She had marveled at the fact that she did not know how to play AT ALL.
Those words haunted me for years. It seems they still do. I remember wondering .. Don’t children just play? Is playing a skill? Is it something you learn? I was flabbergasted. For the millionth time that year, I felt like I had dramatically failed my child when I heard those words. How could I have not noticed that she didn’t know how to play?
But damn it all, here was my kid playing. And playing BIG. This was elaborate, dramatic, pretend play. Characters interacting with one another as part of a grand scene. Voices! Different, distinct, appropriate voices for each character! A sentence ran through my head.
She’s catching up!
Followed by another one.
“This is a disorder, Jess. Not a delay.”
“Her development will not ‘catch up’, per se; it will simply happen in a different order.”
The first specialist we ever saw. The speech therapist who directed us to the autism clinic – Do not pass Go, she had said. Do not collect $200. Just get help. The one who spent twenty minutes with our baby and knew. Just knew. And she was right about so many things. Not a delay; a disorder. A different order.
I’ve come to dislike disorder. I prefer Brooke-order. She shows us time and again that she will come to it, whatever ‘it’ is when she is good and ready. I guess our humble job is simply to make sure she’s armed and ready when that time comes.
Apparently she can take it from there.
Ed note: There was a great conversation in the comments on that post. I’ve copied it in part in the comment section below.