Susan Senator

The 12/4 Boston Globe Sunday Magazine ran a piece on vaccination and autism by Dr. Darshak Sanghavi. The bit that really got under my skin, if you will, was the following quote:

AUTISM FRIGHTENS PARENTS more than almost any disorder, since it implies that the child can never function independently in society and may never fully reciprocate, or ever fully appreciate, expressions of love.

I think that this quote does more to reveal the bias of Dr. Sanghavi than any reality about autism parenting. I’ll admit that when I first heard the diagnosis “autism” when Nat was three, my heart stopped, and a part of my life closed in on itself. But looking back I think a lot of that was due to the lack of information available to me at the time, and the plethora of autism stereotypes, such as from the movie Rain Man. (Don’t get me wrong; I think Barry Levinson and Dustin Hoffman did a wonderful job in portraying a form of high-functioning autism, but what I did not know is that in this day and age a person with Ray’s abilities would probably not be institutionalized the way Ray was.

When I first got the diagnosis, I hastened to the library, only to find the very dry and hopeless DSM (Diagnostic-Statistical Manual, used by doctors to diagnose) and wanted to slash my wrists. Luckily for me, I also found the wonderful Sean and Judy Barron’s There’s a Boy in Here, in which Judy decides for herself what is what about autism, and plows ahead to help her son in the face of the prevailing theory at the time, which placed the blame on her, the mother.

What we need is more honest and positive accounts of living with autism. Parents need facts that help them strategize and advocate for their kids, not horror stories and hopelessness. They need hugs and encouragement. Autism need not be a death sentence. Our children were not stolen; we just have to look a bit harder to see them.

As the Peanuts gang sing, “Christmas time is here.” And one theory bouncing around the blogwaves this season is that Yukon Cornelius was up to something else when he licked his pickaxe in Rudolph the Rednosed Reindeer. Boing Boing says it is because there is a peppermint mine in an original version, and Cornelius realized that it is this he has been looking for all the time, not silver and gold.

I say, “Balderdash!” Spare me this Scroogelike revisionism! Even if Rankin himself told me that the original didn’t contain Sam the Snowman (apparently it didn’t!) I would cover my ears and say, “blah, blah, blah, I can’t hear you!” After all, even Count Leo Tolstoy had many versions of War and Peace before it became the War and Peace we all know and love (anyone remember A Decembrist Story?).

Cornelius is licking for silver or gold. Hence the song. Hence Cornelius’ entire raison d’etre, his modus vivendi, you name the pretentious idiom. I’m sorry; you can’t just introduce a peppermint twist forty years later. This bumble just don’t bounce.

I was on New England Cable News’ “News Night with Jim Braude” yesterday. This was one of the most enjoyable interviews yet. Braude is a terrific, dynamic interviewer with a head full of questions and intelligent conclusions. He actually made me laugh several times on camera, quite a feat for me because I am usually concentrating too much on the questions to even get near a smile. You can watch it on my Watch & Listen page.

These sections from my work-in-progress on scattered throughout the blog. To get the entire book, you’ll have to hope a publisher will buy it…

Nick looked at his bowl of chili. He heard the clatter of Mommy setting down the other bowls. Slam! Dan took his seat, on the opposite side of the table from him. The air shook around him and went deep into Nick’s ears. He lifted his arms in the air and opened and closed his hands, to push the noisy air away. “Hew, ssh,” he said, which also helped quiet the air.

Henry slid in between them. Daddy was still not there. Nick looked at Daddy’s empty chair. A question-feeling formed in his mouth. He took a quick sideways glance at Mommy, putting her own bowl down and pulling out her chair.

“Whatisitnick?”

Nick turned away from her. He did not want words right now. He wanted to remember his question. But he could not.

“Nick. What. Is. The. Matter.” Said Mommy, bringing her face close to him. “Why. Aren’t. You. Eating.”

Eating. Nick smelled his food deeply. “Yes,” he whispered. He wanted to eat. His tummy was empty and making noise. It had felt like that for a long time. He did not eat his lunch today, and Maureen wasn’t there, so he did not get chefboyardee. Maureen always made him that lunch if he didn’t like the lunch. But today it was Laura and Laura did not know about chefboyardee and Nick could not remember how to tell her.

The chili smelled hot and brown. Nick liked hot and brown smells. Chili, chocolate, leaf piles, and Mommy’s garden were all hot and brown smells. But Nick could not eat because the chili had no powder on it. He looked for his spices but they weren’t there.

Suddenly Henry stood up. He walked behind Nick’s chair, into the pantry. He came back with two small bottles, the chili powder and the onion flakes. He set them down in front of Nick without a word.

“Oh, sorry, Sweetheart!” Mommy said.
Nick turned the bottle upside down and coated his beans with the red, dusty spice. Then he did the same with the onion flakes.

“Ew, how can he eat that?” asked Dan disgustedly.

Mommy smiled. “I really don’t know, Danny. I think he likes the way it feels in his mouth, don’t you Nick?”

Nick kept chewing. He did not understand what Mommy had just said, he had only heard Dan shout. But even though his ears hurt, the powder on the beans brushed his tongue like butterfly wings and he smiled.