Thursday, September 13, 2012

Tenaciously ignoring the Magic Number.

Today I saw this article, with a change in numbers: Now we have until nine years, apparently.
From an article in Parents.com:
"The latest studies show that almost 80 percent of kids with autism now have some speech by age 9, whereas only 50 percent of these kids were talking 20 years ago." --Catherine Lord, Ph.D., director of the Center for Autism and Communication Disorders at the University of Michigan, in Ann Arbor.

Just a couple of years ago, I remember reading in several places that basically if he didn't have verbal speech by age six, it was all over with talking.  Move on, the experts said, to augmentative communication, or sign, or whatever. Statistics say verbal is not going to happen, ever.

When Dan was five, I felt like a dark door loomed ahead. I dreaded Dan's sixth birthday. It came anyway.
While his verbals existed, it was like pulling teeth for one-word, very inarticulate responses. Six came and went, turned into seven. Still, nothing major happening, just small, gradual changes.
In my heart I was crushed but in the back of my head I thought: "Wait, but most six year olds that I know aren't very mature and able to communicate that well when compromised...why would a kid with Autism be any different?" And doesn't the average six year old improve with maturity?" Also, I kept hearing stories over and over about kids at ages eleven, twelve, thirteen, even sixteen suddenly having a breakthrough and beginning to communicate in various ways. Why wouldn't speech be the same?

For Dan, motor planning is the barrier. His finest of fine motor skills --our oral motor muscles are the most crazy complicated in the body-- are just too hard to coordinate with breath control and vocal output, plus translating pictures from his head into words, not to mention just staying organized long enough to process all that! It's just too much to ask a six year old who's neurons look like a box overflowing with tangled wire. (that's a metaphor that one of Ethan's fourth-grade classmates came up with to describe disorganized brain growth in autism. I love this generation of visual thinkers!)

We know that gross motor skills provide stability for fine motor skills, as well as sensory processing which helps with overall coordination AND cognitive and emotional regulation.
I'm constantly working on trunk and gross motor foundation skills to support fine motor skills in OT, why wouldn't it be exactly the same with oral motor? Are we expecting these kids to be done and coordinated at age six, when their overall body is still figuring stuff out?
Hmm, I thought. If you can't coordinate stair descent, you surely aren't going to be able to coordinate all the consonants formed in the word "October". 

So at age six, do we give up on stairs? Or fine motor skills? Of course not.
I don't understand why speech would be different.
But at the time, when the Year of Six rolled around, I grieved a little bit --although my speech therapist friends told me to disregard those statistics. I couldn't help it.
Still, nagging in the back of my mind, I felt like it was stupid to forget about gross motor skills and the role in speech. And Daniel was showing some great strides in his whole body's ability to coordinate. He's always been on his own developmental curve, and just like ME,  (who finally ran a 5k and started a blog last year) he keeps developing.
And in year seven, as his body grew and motor planning got better, we saw changes everywhere. Last year (his seventh) he started swimming lessons and improved goss motor skills started to gradually emerge over the year. He began going down the stairs with alternating feet, instead of like a toddler. He began riding a scooter fast, demonstrating balance and strength. He began to run with more mature patterns using trunk and pelvic rotation, instead of in high guard with his hands flapping all the time. He ran down the hill in our backyard without falling.

Sure enough this summer right before he turned eight, we started speech therapy again because he was trying to tell us things with his voice, and struggling to articulate sounds for the first time ever, self-motivated to change his speech and communicate to us this way.
For Dan,  (like every kid I know with Autism, he is like no one else with or without Autism), things are still connecting in there, and his motor planning may just get there over time. He will need the motor foundations first. We are still hopeful, after a two-year hiatus from concentrating on speech, to see if this will emerge. If not, my heart is still holding a space that is protected and ready to hibernate that hope, and put it away to work on other things.
When I read this article from Parents.com, mostly things I had heard before, and saw that the statistic had changed from six to nine years of age I thought: "Gee, wish that had come out sooner."
Having had this knowledge would have saved me some serious heartache on his sixth birthday. I'm so glad things are getting better for families and that we are seeing more research, with more hope and realistic expectations for giving them what they need: TIME.
Time to mature, to process, to make connections, to become internally organized as their bodies learn how to adapt and organize with the outside world. That box of tangled wire takes time to navigate, processing is longer for these kids. We all need to follow that slow, elongated developmental curve with them.
I wonder what the statistics will say in another ten years. What can happen if we give them 12 years?

Now, autism mommies, before you run out and start PT, or yell at me about your 20-year-old who can do backflips but is non-verbal, I KNOW  Dan's issues with communication are not the same as everyone with Autism, and that the communication centers of the brain are complicated and varied in everyone. (ask me about giving my husband directions while driving in Italy for example, yikes.)
I'm not saying that if he becomes super athlete Brett Favre that he will suddenly articulate auctioneer-style, either. There are no simple correlations. There are plenty of non-verbal people out there who are coordinated, and highly intelligent, and also people who are so challenged in their processing that gross motor development may never happen, or help. There are people who are verbal with coordination difficulties, too. Those are obviously different brain issues, different mysteries.
--And thank you Autism for never being straightforward, right?

But for my kid, in my gut, I know that his body is working toward change and that it seems to make sense. So when I see statistics changing like that, it validates me, and encourages me to persevere in advocating for him, and his peers. It also gives me hope that not only is Dan changing, but our society is changing. Like I said, I could have used that change a few years ago, but I'm happy for the newer families out there who will maybe be able to skip the sadness on that 6th birthday. Lastly, it's a lesson for me to read statistics judiciously, and remember that every kid with Autism is on a different path.


 Here's the article with some interesting facts:
 http://www.parents.com/health/autism/facts/facts-about-autism/?page=1



In the meantime, just keep stimming, Families...