Making autism case public

Hey -- sorry I've neglected the blog for a few days. I've been busy establishing a presence on Facebook and MySpace. It's like playing with new toys. Anyway, I promise some new recipes this week. I've recently had success with a "chocolate" pudding recipe (no dairy, no chocolate) and also a cutout cookie recipe. For now, I'll reprint a recent opinion piece from the New York Times regarding the autism court case. Worth reading.
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New York Times
March 11, 2008
Editorial
A Puzzling Autism Case
The federal government’s concession that vaccines may have triggered brain deterioration with symptoms like autism in a young girl is sure to exacerbate concerns among parents worried about immunizations. It is imperative that the court for vaccine compensation unseal documents involved in this unusual case so that experts, families and their doctors can better understand exactly how Hannah Poling, now 9 years old, came to be harmed after receiving a battery of shots when she was a toddler.

For years medical authorities have been assuring us that sound epidemiological studies showed that vaccines and a mercury preservative once widely used in them were not implicated in causing autism, a condition characterized by lack of social skills, problems with communication and repetitive behaviors. That almost certainly remains true for the vast majority of youngsters.
Hannah’s case was complicated by a rare disorder that can deprive the brain of needed energy and cause neurological deterioration. When Hannah’s case was submitted to a federal vaccine compensation program, the government settled before the evidence was argued in a hearing. Government medical personnel apparently found that the vaccinations aggravated the underlying disorder. An alternative theory — that the vaccines may have caused the disorder — is viewed skeptically by government experts.

Top health officials are still urging parents to get their children vaccinated, and with good reason. All children deserve protection against infectious diseases, and even youngsters with these rare disorders may be at risk of neurological deterioration if they contract one of the diseases that vaccines protect them against.

It will be important to develop the best possible medical guidance for youngsters with rare defects. That effort would be enhanced if the government makes public all relevant documents in this puzzling case.

Autism was everywhere -- we just didn't notice (HA!)

So, if the autism rate is a creation of better diagnosis, where are all the undiagnosed autistics from past decades? They must be everywhere, right? Look around your office or hometown -- how many do you see or know over age 20?

Take me, for example. I have two children with autism. A man in the next pod over has an autistic son. The supervisor two pods in the other direction has an autistic nephew. A supervisor nearby has a child with an autism spectrum disorder. My wife's best friend from her youth has an autistic son. So does one of my friends -- two children in his family. My last boss has an autistic son. Two families in my neighborhood are struggling with autism spectrum disorders. Two families in my small church are struggling with the same. There are about six children in my daughter's kindergarten class with spectrum disorders with more coming next year.

Now, how many kids did I know in high school who fit the autism profile -- maybe one, undiagnosed of course. Or, he might have just been very shy.

This is an item from the Huffington Post...

The Boys on the Bus
Posted November 5, 2007
By Kim Stagliano

My kids get door-to-door pickup service to their public schools. It's one of the "perks" of having autism. Remember the old jokes about riding the "short bus"? Not so funny anymore. On one of the two buses that stop at my house, I see three boys in the windows. Boy #1 is a good looking kid. He also has the telltale facial traits of Down syndrome. He sits tall, alert, and looks out the window at the world. When I wave to him he returns the gesture. His smile could light up a Broadway stage. He greets my daughter as she mounts the stairs. I call him "The Mayor."

Boys #2 and 3 are typical looking kids, blond, also handsome. They sit hunched over with their faces contorted, eyes squeezed shut and their fingers in their ears, blocking out the world as if in pain. If they happen to glance at me, they cringe and turn away instantly. (I haven't always had that affect on boys, in case you're wondering.) Boys #2 and 3 have autism.

You simply can't mistake their autism for anything else. It doesn't look like intellectual disabilities, DS, cerebral palsy, or any other category of disability. And yet the drums are beating in the national media (again) to tell you that there is no autism epidemic, simply better diagnosis. Or to promote this offensive explanation for the skyrocketing numbers of kids with autism: parents clamor for the diagnosis in order to get school services. Sure, blame the greedy parents! "I'll take reading, writing, 'rithmatic, a one-on-one aide, OT and Speech and a couple of those naked lady tees please."

In my household, autism is an epidemic. We're the New England Patriots of autism. 3 and "Oh!" (Our three daughters have autism.)

Along with telling us there is no epidemic of autism, a major push is on for two pediatric autism screenings by age two. That confuses the heck out of me. Doctors are already so good at diagnosis that we've gone from CDC stats of 1 in 10,000 to 1 in 150 in twenty five years. Is there a prize if we get to 1 in 50 kids?

I'm not sure the pediatricians are ready to take on the "two by two" challenge. They have not been trained in the neurobiological symptoms of autism. After all, autism is classified as a psychiatric/behavioral disorder, even in 2007. I asked hundreds of parents how helpful their pediatrician had been as they sought answer for their kids. Their answers were disheartening. The majority said that their pediatrician was an impediment to getting a diagnosis.

For instance, when a parent expressed concern that her child had regressed in speech and started chewing his clothing voraciously, "There's nothing wrong with him. He's just not a dummy, like most kids. He's worried about the world." To the Mother whose child couldn't sit up at 12 months, "She's a late bloomer." Another gem, "Do you see the way his eyes follow this block? That proves he doesn't have autism." To a mother whose child wasn't clapping by 12 months, "If he does have autism there's nothing you can do about it."

Here's my personal favorite. "I've never heard of a family with more than one child with autism." That's what my pediatrician told me in 1998 when I expressed concerns about my second child's lack of speech. He was in his mid-forties and affiliated with Children's Hospital of Philadelphia, one of the most respected hospitals in the nation.

I believe my old pediatrician. I'm sure he had never run across a family like mine. Because I don't think we existed. The epidemic is real. It's here. The faces of those boys on the bus tell me so.

Autism, Africa and an 8-year-old boy

This is just a very sad story, but one I couldn't stop reading.

Grieving mother plans autism school

By MICHELLE MOLZ
For the Courier-Post

MOUNT LAUREL

She traveled thousands of miles from one of Africa's poorest countries to seek help for her autistic son.

Now, after her 8-year-old boy died unexpectedly, Sabelle Jelani is preparing for a new journey. The 39-year-old township resident plans to open a school for autistic children in Dakar, capital of Senegal, as a memorial to her son, Hakeem.

It would be the first of its kind in Senegal, Jelani's native country. She left her homeland and spent the past five years here caring for her son and educating herself about autism. She hoped to return to Senegal to share her knowledge with families who have no resources to help them cope.

Plans for the school were under way when Hakeem suddenly died in his sleep in Dakar on Sept. 8. They had been visiting family for the summer.

"We laid down, and I rubbed his head, his chest, his hands, and he was stroking my cheeks, my nose, my eyes. He fell asleep and never woke up," Jelani said in a telephone interview from Dakar.

"I was his shadow, he was my shadow," said Jelani, who with her husband, Ahmed, 59 have two other healthy boys, Osman, 11, and Habib, 7. "He was a sweetheart. He was a wonderful soul."

Read the rest at the Courier Post.