The Expanding Vocabulary of the Autism Mom

11/17/2011 09:02 am ET

I admit to having a potty mouth. There is one word I never use though. The "C" word. You know, that nasty, vicious four letter word for a woman's genitals. It's so mean and desperate.

Well, move over *&nt, there's a new "C" word in town. CAUSE. And no one wants to utter it.

The media is jumping all over itself to scream about the new CDC autism numbers. 1 in 150! All of which is due to better diagnosis according to most reliable reporting sources. OK - I agree. (Shocked?) There is much better awareness of autism and docs are more willing to use the term AUTISM with parents than in the past.

But can better diagnosis really account for a change from 1 in 10,000 to 1 in 150 in 20 or 30 years? I have a dear friend who was a special education major in the early 1970's. She's told me that she had a Down Syndrome population, what was called MR (mental retardation) and cerebral palsy (each of which, like Down, often have a physical "look" making the diagnosis recognizable even to lay people.) But rarely, if ever, did she have students with autism. Yes, there were autistic students, but not entire schools full of them.

My kids take special education CCD (catechism classes) at our Catholic Church. The teacher has taught the special education class for 27 years. I asked her, "Have you seen a change in your population?" Her answer was just like my friend. "It used to be Down Syndrome kids and MR, never autism." The current class consists of nine students with autism.

Would the Brady Bunch's family doctor, the one who came to the house with his black bag, have bopped by Bobby if he was 7 and in diapers? Missed Marcia repeating "Davy Jones Davy Jones Davy Jones" thirty two times in a row without ever making eye contact or greeting him? Passed by Peter without asking why he was lining up all of his trains on the table without playing with them? Are we to assume that pediatricians were THAT blind and dumb? No way. The pediatrician we had the longest (10 years) is a Mensa member. These are not stupid people.

I can recognize a child's limp body crushed in the road as having been hit by a car. Should I place ambulances every mile along the road waiting to pick up the young bodies? Should I build new trauma centers for the injured kids? Or should I determine how the child ended up in the middle of the road and try to prevent the accident from ever occurring?

Why hasn't anyone asked "WHAT IT CAUSING ALL OF THIS AUTISM?" Today's NYT editorial ran a letter to the editor from the head of the May Institute, a fine school in New England for the autism population. They say: "We must do better at educating families about early warning signs, at identifying and getting a diagnosis for these children as early as possible..."

They're right! Early diagnosis means you can jump into therapy and treatment faster and that has scientifically-proven better outcomes for the kids. Especially the intensive ABA therapy that May offers families. Studies show our kids need 20, 30, 40 hours a week of this therapy and few school districts are equipped to provide it. Hiring private costs a fortune, if you can even find the trained staff. Families are advertising on for private therapists to come to their homes and offering huge salaries. Most families have no access to this care. But with therapy and treatment some kids are dropping the diagnosis. But why didn't they ask "Why are our classrooms overflowing? Why do we have to build more schools?"

I don't claim to have the answer. I just want someone who can do some research that the general scientific community will embrace to ask this third rail of a question.
"WHAT IS THE CAUSE?" My voice doesn't mean squat. Where is the person who will speak up for my kids? It's enough to make me want to use the "C" word. The original one, that is.