Friday, January 8, 2010

#26 Developmental Patterns

I'm reading several books at once right now (things are getting back to normal around here!) and starting to search out some new autism blogs. A common theme I've stumbled upon is how shockingly uneven development in autistic children can be. In some areas, a child may do quite well, even precociously, and in other areas, the same child may exhibit little to no age-appropriate progress.

Books like What to Expect the First Year and What to Expect the Toddler Years are pretty useless for helping parents identify autism. Last time I checked (a few years ago before I threw my copies in the trash), the information on autism was largely incorrect or misleading, and definitely focused on extreme cases...which are not the majority of cases. Since these were my developmental bibles for my children, no wonder I didn't see the warning flags for what they were.

Most developmental books I've read stress that normal children have uneven development. A friend had her baby daughter the day after I had my firstborn (Nick), and her daughter showed precocious gross motor development, climbing stairs at six months, walking at 8 months. But her fine motor skills were poor in the first year. Nick, on the other hand, walked at 12 months, but could handle and manipulate very small objects with ease, even stacking blocks as high as he could reach when What to Expect said he should be stacking four blocks. Both children were developing normally.

So where is the line between normal uneven development resulting from natural variations in brain growth and abnormal uneven development resulting from a Pervasive Developmental Disorder?

As parents of autistic children, we often ask the question, "Where is the line....?" And damn it, there's no answer. Or at least no clear-cut answer.

I knew something was wrong after Jack had been in preschool for 8 months and still didn't act at all like his peers. Hints came sooner, but my ignorance was astonishing. I had read dozens of early development books (even the scary parts about autism and fragile X and cerebral palsy, because I'm thorough that way). Had I known then what I know now, he would have had evaluation at least 8 months sooner than he did. But I just did not know. The right information just wasn't available to me in the books I'd read.

Some parents beat themselves up for delaying, and I don't see the point in that. How could I have known? Who would ever have thought my happy, healthy, giggly boy had autism? He wasn't Rain Man or a savant or sitting in a corner banging his head. There just weren't any dramatic signs like the books indicated there should be.

The books need to be rewritten.

Anyway, how did/do you--as a parent, relative, care-provider, teacher, therapist, or doctor--recognize that some invisible line had been crossed with your/a child?


JoLynn said...

I remember walking in to Max's day care and other children were saying either, "Max's mommy" and pointing at me, or even, "There's Max's mommy." It hit me like a brick wall at that point. Max wasn't calling me by name. He used hardly any words or gestures, and here were his peers saying sentences. That was my line. That's when I knew we had a speech issue.

The other invisible line was when a friend said, "I tried to play with him, but he didn't even recognize I was there. He just kept playing with his ball table in the same way over and over." Another thing that made me go, "hmmmm."

itsallrosi said...

Hi, Susan. I found your blog through Ann Cox's. I think the approach to the book you're writing is a great idea.

For us, no talking was the "big" red flag. Looking back now I realize there were some other clues that I didn't pick up on. As soon as Willie started walking he would play a little game with himself where he would drop a ball on the ground, kick it, then run after it and kick it again. He'd go all around the house doing this, but if I rolled a ball to him he would never roll it back and sometimes would just let it bounce off him. I thought this was odd, but also was so impressed with his little kicking game.

I'm going to poke around here a little more and take a look at some of your other threads.

tinamarie said...

I just knew when he was a baby that something was not right. Tony would tighten up when held. He barely ever cried. Peopel used to tell em he was such a good baby and so easy to care for.
He actually drank his bottle better when he was sitting in his infant seat than being held.
He also rarely ever smiled.
Then he did not start talking. Everything was jibbereish. At 18 months hecould not say any words. His first true words were at around age 4.