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Monday, April 2, 2012

Today is World Autism Awareness Day!

Hi everyone!
Today is the big day: World Autism Awareness day. In the next day or two I will be collecting pictures from all of our family and friends showing their support for all of our kiddos. At our own home we've all dressed in blue today. I even have on blue nail polish! We've also turned on blue lights on our doorway and in our window! Our wonderful neighbors agreed to turn on a blue light at their homes to show their support for Nathan (thanks, guys!). Yesterday at church I handed out blue ribbons and asked members of our church family to pray for all of those touched by autism. Today I handed out blue ribbons at the school where I work. One teacher even asked me to come and speak to her class about autism. I was so pleasantly surprised to hear some of the things kids already knew... they seemed to all have the correct information, they just needed someone to pull all the pieces together to make sense to them. Some of them felt embarrassed asking certain questions but I reminded them that I wanted them to ask everything they needed to ask so they would not walk away with incorrect assumptions. What an amazing moment!!!!!

I have been incredibly humbled at the outpouring of support from my family, friends, co-workers and even folks on Facebook with whom I hardly ever communicate. Ironically, the people I thought would be most supportive weren't, yet those who were the most enthusiastic were folks I barely socialize with. This has been a truly eye-opening experience.

Exactly one year ago we decided to go public with the news that Nathan had been diagnosed. Even then we were shocked at how the people we least expected were the most supportive, caring and understanding. It had been almost one full year since his diagnosis and we were just coming out of the "fog" of the initial maze of therapists, appointments, home programs, etc. I often forget how well Nathan is doing in comparison to those early days. I have a co-worker, a wonderful speech/language pathologist, who frequently reminds me to think back to where we were a year ago (those were NOT happy times). Ironically it's only on those "off" days now, the ones where I find myself either pulling out my hair, walking away from Nathan while I count to ten (deep breaths!) or thanking God that the straps of our car seat are so strong, that I realize how far we've come. Just a year ago, those "off" type of events occurred numerous times in one day and now they are maybe once a month! It truly is amazing how far Nathan has come and it's been ONLY by God's grace!

This week I found out that our awesome little friend, David, said his first unprompted word: "outside." He really wanted to go outside, I suppose! That same week we found out that David had played with a friend at daycare!!!!!!! I must admit I cried tears of joy when I read the news. I know God has very, very special plans for David and his family and this is just the beginning! I am sure his parents often sit back and see where he's come in the past year and cry some tears of joy, too.

Watching the progress each of these boys has made, along with all the other kids with ASD that I deal with on a daily basis, got me thinking. The whole idea came clear in my mind as I spoke in that classroom today: why do some kids respond differently than others to the same exact therapies? I've been listening to the audiobook for "Strange Son" by Portia Iversen (http://www.strangeson.com/). One of my co-workers gave it to me. It, too, is a wonderful story of how differently kids respond to the same exact type of therapies. Why is this so? I know ASD is a wide spectrum and not two children with ASD are the same. But why do some respond so amazingly well to their therapies and for others things just don't click? I went back to graduate school to try to understand, yet I still don't! Today the article below was published. It describes a research study that was just conducted that tries to answer that exact question. I hope you find it helpful. No definite answers but certainly positive information for us to read. http://www.chicagotribune.com/health/sns-rt-us-improvements-autismbre8310na-20120402,0,3391812.story

Have fun lighting it up blue today!

Improvements in autism symptoms vary kid by kid

Tarya Seagraves-Quee dresses her six year-old autistic son Joshua in their room at a motel in Cambridge
Tarya Seagraves-Quee dresses her six year-old autistic son Joshua in their room at a motel in Cambridge (Brian Snyder, REUTERS / July 10, 2009)

NEW YORK (Reuters Health) - A new study suggests that social and communication skills in some kids with autism may improve over time with therapy, but other kids will continue having problems functioning as they get older.

Not surprisingly, kids who had milder symptoms when they were first diagnosed tended to be doing better a few years later than those who started out with more severe autism.

But among close to 7,000 children followed by researchers, there was also a group of so-called "bloomers" who started out with lots of communication and social problems but made fast gains during their elementary-school years.

"There's a wide variety of children with different kinds of symptoms that fall within this (autism) umbrella," said Christine Fountain, the lead author of the study and an autism researcher at in New York. "We were interested in how these symptoms play out over time."

The new findings, published Monday in Pediatrics, come just a few days after the Centers for Disease Control and Prevention released new data suggesting that one in 88 kids in the United States now has an autism spectrum disorder, which includes less-debilitating conditions such as Asperger's syndrome (see Reuters story of March 29, 2012).

Using data from California centers responsible for testing and treating kids with autism, Fountain and her colleagues tracked kids ages two to 14 who'd had at least four evaluations. During those approximately annual evaluations, staff recorded kids' symptoms of social and communication difficulties as well as their repetitive behaviors.

The researchers found that especially when it came to social and communication scores, most kids improved over time -- though some much faster than others.

White kids, and those whose parents were more educated, tended to have less severe autism symptoms during treatment. They were also more likely to be among the 10 percent or so of kids deemed bloomers, whose symptoms improved dramatically between ages three and 12.

Kids who had other intellectual disabilities along with autism weren't likely to have very large improvements.

"The conclusion is, if you have mental retardation as a co-occurring condition with autism, your prognosis is worse," said Johnny Matson, who studies autism spectrum disorders and intellectual disabilities at Louisiana State University in Baton Rouge.

That's not new, he said -- previous studies have shown that kids with autism and a normal IQ improve more from intensive therapy than those who have both autism and intellectual disabilities.

Unlike social and communication skills, repetitive behaviors didn't tend to improve or worsen much over time among the majority of kids in the study.


The gaps in improvement based on parents' race and education are probably about access to good-quality treatment, according to Matson. The good news is, "those gaps are narrowing very rapidly," he told Reuters Health, because of laws requiring insurance companies to cover intensive treatment for all autistic kids.

Matson, who wasn't involved in the new study, had some doubts about the specific "symptom trajectories" the researchers used to separate kids, and said a lot of autism assessments aren't done correctly to begin with -- which makes interpreting changes over time difficult.

"I think all (kids with autism) are going to improve, it's just a matter of how much they're going to improve," Matson added. "I don't believe you can cure autism. Having said that, you can make it a lot better," especially if kids with autism continue to get therapy as they get older.

Still, another autism specialist not involved in the research said the different patterns in improvement -- or lack thereof -- jibe with his own experience.

"We deal with this problem every day, and we sense that there are different patterns or trajectories... in the kids as they develop," said Dr. Andrew Zimmerman, from the Lurie Center for Autism at Massachusetts General Hospital for Kids in Lexington.

"For some kids, you work very hard and you do a lot of therapy and nothing happens or very little, and then some kids seem to do really well," Zimmerman told Reuters Health.

Fountain said the findings suggest that providing equal access to the best autism treatment for minority and less well-off kids will be important going forward. Some states including California provide services to all kids with autism regardless of their ability to pay, she added, but others don't.

Kids' specific conditions and symptoms may play a role in their long-term improvement, but the treatment they get at certain points in development is also likely to be important, she added.

She and Matson said that parents of children with autism should be persistent in making sure their kids get the help they need, but agreed they can also be optimistic.

"There is a bit of a hopeful note in that we did find that most children get at least a little better over time," Fountain told Reuters Health.

Zimmerman agreed, adding that the idea of some kids being bloomers is especially exciting.

"There's a lot of hope here," he said.

SOURCE: http://bit.ly/cxXOG Pediatrics, April 2, 2012.

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