Most Americans don’t remember those days. Why? Because four years after I got sick, the Centers for Disease Control and Prevention began a mass measles immunization program. By 2000, the number of reported cases of measles had decreased to 86 and the number of deaths to one.

So it is distressing to see that this year measles is on the upswing.

As of July, there were 131 measles cases reported to CDC, the highest number since any comparable period since 1996. Most pediatricians and public health officials believe that’s because fewer parents are bringing their young children in to get vaccinated.

And why is that? Because since 1998 the idea that the measles-mumps-rubella (MMR) vaccine causes autism has scared them away.

This is not just shameful. It’s scandalous. The entire phenomenon was spawned by a few studies by one research team with results that nobody else has able to replicate and publish in the peer-reviewed medical literature.

Measles is not “just a charming appearance of red spots on a two-year old’s stomach” and Kiely calls on federal public health officials to step up, speak out, make it clear that “The MMR vaccine doesn’t hurt kids. Letting them go without it will.”

Organizations and advocates who support the notion that vaccines or something in vaccines causes autism often suggest that nothing could be worse than autism; that measles, cancer, any disease is a fate preferable to the dreaded “autism.”

It’s a notion that I find really troubling and ultimately harmful and hurtful. Yes, we’ve had our struggles to help Charlie and do the right thing by him but life’s always better with Charlie, and Charlie has autism, and that’s all part of the story.

Charlie was diagnosed with autism when we were living in Minnesota. It’s now eight years since we left the Twin Cities, and we’ve stayed in touch with a family whose child and Charlie share almost the same birthday. Our trajectories and choices have been different but so much more is the same. Both Charlie and our friend’s child are in new schools this year, are older, and many changes lie ahead.

Jim had to go into his office for a university event and Charlie and I were late getting into meet our friends, due to certain subways not running on the weekend. We had to take a different subway than usual and I realized that we were at our stop too late; Charlie, amid all the unfamiliarity, did not want to get up. A man with a boy of about 5 said to me, not unkindly, “don’t worry, there’s another stop coming up really soon.” It did and Charlie and I got out around Lincoln Center and hurried over to meet our friends. We talked and walked around the Fordham campus some and then Jim got the idea of taking the subway to lower Manhattan. Our friend’s child liked that idea a lot and down we went.

Charlie was excited and exuberant to be amid old friends and made what Jim describes as a sort of Olympics-worthy run with a shopping basket in had through a store on the way to finding some dinner. There’s always too much to talk about when we see our friends, about schools and how far we’ve come and life. Because we’ve all indeed come far, done much, changed.

Jim hailed a taxi for our friends to take back to their hotel. Charlie hopped in first when it pulled up and had to get out (and then the taxi started to drive off without all of our friends getting in). I felt like I had started several conversations with my friend and not been able to finish any; there’s just too much to talk about, too much to cram into a meal and a good walk. Too much.

The three of us walked through Chinatown and Little Italy to take the PATH train back to Jersey City. When we got on the train, Jim and I saw red on Charlie’s fingers and around his mouth: Another tooth loose.

Another night with Charlie, with our bestest friend, and some very good old friends who are walking on the same path us.

Autism a fate worse than measles—I have to think not.

Share This

• Got Autism? (asks PETA)
  PETA puts up a billboard in Newark NJ and takes it down.
• Is That a Tattoo With……Your Mom’s Cell Number?
  Of Safety Tats and other ways to keep a child safe.
• McCarthy’s, Er, “Autism” Pole
  Jenny McCarthy puts a stripper pole in her son’s room.
• What! No Hoodies?!!!!?!!!?!
  Imagine life without a hoodie for warmth and to block out noise—no thanks.
• Beware Jenny McCarthy and Her Angry Mob
  She’s got a mob (of “mother warriors,” presumably”—quite an image.
• Autism Genes, Math, and Music
  The genes that are thought to cause autism may also give mathematical, musical and other skills to those without
• Mental Health Parity Bill Passes
  Included in the economic bailout bill signed by President Bush last Friday, October 3, was a new law requiring equal coverage of mental and physical illnesses.
• Here We Go Again: Family can sue vaccine maker, Georgia court rules
  e decision allows Marcelo and Carolyn Ferrari to proceed with a civil lawsuit against vaccine maker American Home Products Corp.
• An Imitation Deficit
  A study by researchers at the UC Davis M.I.N.D. Institute suggests that autistic children have “impaired imitation skills” because they spend less time looking at the faces of people who are modeling actions or skills.

Share This

“I’ve been told many times the Clark County School District is doing the best they can to staff autism programs.

“I’m wondering if the best we can do is the best for our kids.”

Sounds like a lot of parents and others are wondering the same.

Share This

This is hardly the first time I’ve written charges of abuse by school personnel or other staff to autistic individuals and it’s hardly a fair portrait of all that most aides, teachers and others do.

We have to figure out how to do better.

Share This

Jim pulled out his MetroCard and Charlie went through the turnstile, or attempted to: Jim discovered this his card was empty and I fished out mine, vaguely aware that the woman from the escalator was going through and then down the stairs. Charlie pushed on the turnstile and Jim put my MetroCard in, and Charlie went through and us after him.

People were hurrying and then running down the stairs. Jim called for us to hurry and I ran with Charlie right behind me. We ran into the PATH car and Charlie found a seat between a tall man with iPod headphones and several big bags in front of him, and a young couple. Jim had found a seat at the other end of the car and I stood, holding onto a metal bar.

Suddenly I saw someone getting up from the other side of the train and walking towards us. It was the woman from the escalator. “There’s seats over there,” she said motioning to the man with the bags and another man in a black windbreaker. “Over there,” pointing to where she was sitting, “move over so she can sit here,” pointing to me.

There followed a confused exchange among the woman, the two men who were seated on either side of Charlie, the man with the windbreaker, and me. I thanked the woman and said I was fine standing (as I was). On the trip into New York, Charlie had taken the last seat available as I stood opposite him; no big deal. I tried to be grateful for the woman’s concern while assuring everyone else, I was fine, I didn’t need a seat, and Charlie was quite fine, thank you. After a few rounds of this, the woman went to sit back down, the doors shut, and the train left the station. Charlie sat quietly with his Leapster on his lap and the other passengers went back to being absorbed in their own concerns, except for a toddler in a stroller opposite Charlie. He looked full-eyed and all curiosity at Charlie as he ate a pack of peanut M & M’s and declined to share with his parents.

The PATH train pulled into Journal Square and Jim stood up and I called Charlie to stand up and we got off the train, saying thank you to the woman from the escalator.

Charlie ran in front of Jim and me down Kennedy Boulevard, and when the light was red, he stopped and waited for us.

Share This

Having spent the past ten days writing about vaccines and autism for the Science Blogs Book Club, it’s occurred to me that the whole vaccine-autism issue has been part of, and even dominated, public discussion about autism for most of Charlie’s life. It was in 1998 that Dr. Andrew Wakefield announced that he had found the cause of autism—-the MMR vaccine—and launched far more than a thousand discussions, diatribes, and disputed claims.

10 years, 11 years and counting of a good life with our boy.

Share This

Even though 90% of the 54 Americans with disabilities are adults, Palin, John McCain, and the news media have talked almost exclusively about children. And that talk has been mostly about “compassion” not “issues.” The McCain-Palin campaign website has a single page on “Americans with Disabilities for McCain,” but it says nothing about policy positions. Other pages mention autism and disabled veterans but no other issues.

In contrast, Barack Obama and Joe Biden have said little on the campaign trail about disability issues but their campaign website provides detailed policy proposals in a comprehensive “Plan to Empower Americans with Disabilities.”

Longmore compares McCain-Palin and Obama-Biden on healthcare, health insurance, and social services for people with disabilities. I’ve written previously about Palin on curing diseases and not on disability.

Share This

That’s what a pediatrician in the Saint Paul Children’s Hospital told me when almost 10 years ago. Charlie was a toddler and not yet talking; the pediatrician nodded about my concerns but told me to give the “joo/juice” thing a try and one day, Charlie would talk.

In the short run, it seemed like the doctor could not have been more wrong. Juice, rice, crackers, cookies, his favorite stacking cups: I said every word carefully and clearly, and kindly, and happily smiling, and Charlie said nothing.

This was in 1998, some months before Charlie was diagnosed with autism. When he started an Applied Behavior Analysis (ABA) program in September of 1999, imitation was one of the first skills that he was taught and little did I know, but imitation would be a long-running foundation for his learning.

A study by researchers at the UC Davis M.I.N.D. Institute suggests that autistic children have “impaired imitation skills” because they spend less time looking at the faces of people who are modeling actions or skills. From today’s Health News Digest:

The study was conducted using high-technology eye-tracking headgear and software that measures with precision the point at which a child is looking when learning a task. Researchers used an actor to demonstrate a task on a computer screen.

“We found that the children with autism focused on the demonstrator’s action and looked at the demonstrator’s face much less often than did typically developing children,” said Giacomo Vivanti, a postdoctoral researcher at the M.I.N.D. Institute and the study’s lead author. “The typically developing children may be looking at the demonstrator’s face to check for information on what to do or how to respond appropriately, information that the children with autism are less inclined to seek. This is an important finding, because children with autism have difficulty learning from others. This might be one key to why that is so,” Vivanti said.
……
In the current study, which was published online in June and will appear in print in November in the Journal of Experimental Child Psychology, 18 children aged 8 to 15 with high-functioning autism were carefully matched with a group of 13 typically developing children. While wearing special eye-tracking headgear, the children were shown video clips that ranged from seven to 19 seconds in length. After viewing each clip, the children performed the demonstrated action. The results confirm previous research that shows that children with autism have difficulty imitating tasks when compared to normally developing children. It also showed that children with autism paid just as much attention to the action being performed as the other children in the study, ruling out previous hypotheses about poor attention to the task.

M.I.N.D. Institute researcher and senior study author Sally J. Rogers speaks of an “imitation deficit” and also notes that these findings suggest that “imitation is not just about repeating an action, but understanding the reason for the action.”

“Do this” and “like me” and “Copy me” or “say this” I say now to Charlie and he looks up, looks in my direction, and tries to do what I’m doing, though in his own way—”perfect copies” aren’t required.

Share This

We three have been passing around this cold like a hot potato—Charlie first, then Jim and now me. Can’t say how grateful I felt that Jim could take care of Charlie on Charlie’s day off and that Jim was well enough to take Charlie on a long bike ride, on a very warm October afternoon.

Who will take of Charlie? Few questions run through my mind more. The question arises when I’m setting up my schedule of classes for the next year; when Charlie has a day off from school that I don’t; when I’m sick, or Jim is sick, or we’re both ill and worn-down. And what about when are older? Retired? With health problems of our own? And when one is on longer here to guide and be there, to protect and love?

How much of this worry leads people, leads parents, to wish they could ensure that a child with a lot of needs might be, would be, will be, okay?

The train was an express and took me all the way to Hoboken. I grabbed my coffee cup and pulled myself into the aisle. The words Special Needs Trust caught my eye: It part of the title of an article in what looked like the Wall Street Journal that a man in a dark gray suit was reading. I made a mental note to find the article later—–and here it is, with the title of An Estate Plan Built for Special Needs.

I’m making sure all of my family reads it. It doesn’t answer all of my questions, worries or fears about the future, but it reminds me that we can plan today to give Charlie what he needs tomorrow. And that, rather than try to wish away the future, we can face it and do what’s right for Charlie, today as surely as tomorrow.

Share This

….The gun apparently fell between the two front seats of the car as the mother leaned over to comb her daughter’s hair.

……..

Her autistic son, Jeremy Marcano, got out of his booster seat, picked up the gun and shot himself in the face, Commander Jose Marrero Rivera told The Associated Press.

Marrero said he did not know where Brenda Lee Cotto had the gun before it fell. Police did not comment on whether the boy’s autism was a factor.

Cotto was a sergeant with the San Juan police department and “her statement will be taken in more detail when she is ready.”

Share This