Friday, March 30, 2012

Autism epidemic, anyone?

From Reuters, “About one in 88 children in the United States has autism or a related disorder, the highest estimate to date and one that is sure to revive a national argument over how the condition is diagnosed and treated. The estimate released on Thursday by the Centers for Disease Control and Prevention represents an overall increase of about 25 percent since the last analysis in 2006 and a near-doubling of the rate reported in 2002. Among boys, the rate of autism spectrum disorders is one in 54, almost five times that of girls, in whom the rate is one in 252.”

Earlier this month I was preparing for the new autism numbers from the CDC to drop. In anticipation of how bad the new autism prevalence could be, I began to wonder at what moment the world would finally see autism as a medical epidemic.

We all remember how quickly everyone got on board in dealing with the supposed pandemics of bird flu and swine flu. The whole world seemed to be talking about the flu and quickly mobilizing to deal with the perceived problem.
Well, where the hell is the concern over autism? The only people I ever hear talking about autism are autism parents. I hardly ever hear or see feedback from anyone else. Autism parents aren’t vocal because we want to be, or because we like to talk about autism. It’s because we have to be. We are fighting for our kids AND we are fighting for your kids.

I guarantee that those who think autism will never touch their life have another thing coming. It will cross their path at some point. So, we better all open our eyes and recognize that there is a problem.

When is an epidemic really an epidemic? When will the public at large wake up from their ignorant slumber? What does the incidence rate of autism need to be before we see national and global change to combat this epidemic? Does it need to be 1 out of every 10 kids? We are headed there quickly.  
The thing that frustrates me the most is that the “new” CDC data and the subsequent “new” rates generated from that data is NOT NEW AT ALL! The data is OLD!

The study was conducted in 2008 (yes, that is 4 YEARS AGO!) on what were then 8-year olds. Those children were born in 2000 and are now 12 years old. As a result, almost none of the children I know on the spectrum (including my own boys) are included in that data set.

Want to know something else about that? My children wouldn’t have been included in the data anyway. Want to know why? Because they only collected data from 14 locations across the US! And, none of those locations were in my state.

Is it just me, or is it insanely tragic that the CDC is reporting “new” data that is horribly out of date from just a small handful of locations?
This does not sit well with me.

When I saw Facebook go full tilt yesterday with all of the articles and stories about the new autism numbers and the links and comments from all of my autism mommy friends, I started feeling more and more depressed about it. I actually had to turn off my computer and walk away because I couldn’t take it anymore. I did not expect to react that way. I mean, this is not a shock to me or to any parent of a child with autism. We all know in our hearts that the numbers are hideously underreported. I see a higher prevalence of autism in my own zip code for crying out loud! 

So at this point, instead of continuing my rant and getting more upset, I will focus on some selected quotes from some articles I read yesterday about this “new” data. Check out the articles and let me know how you feel about the CDC’s announcement.

From ABC News:  “The data was collected by The Autism and Developmental Disabilities Monitoring network, an organization funded by the CDC to track autism rates. For this report, the ADDM reviewed medical records of 8-year-old children from 14 different areas across the country. The study focused specifically on 8-year-olds because most autism spectrum diagnoses are made by the time a child reaches their eighth birthday.”

“The CDC study released Thursday is considered the most comprehensive U.S. investigation of autism prevalence to date. Researchers gathered data from areas in 14 states - Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin. They looked specifically at 8-year-old children because most autism is diagnosed by that age. They checked health and school records to see which children met the criteria for autism, even if they hadn't been formally diagnosed. Then, the researchers calculated how common autism was in each place and overall.”

So, they are only looking at SOME records of SOME 8-year olds in a FEW scattered places. We need to seriously consider doing some research like they did in South Korea that was population based and reflected an incidence rate of 1 out of 38. I would venture to say that their study is more indicative of what the true number could be here in the US.

From Reuters:  “CDC investigators warned, however, that the 14 sites are not ‘nationally representative.’ As a result, the rate of autism being reported on Thursday in CDC's Morbidity and Mortality Weekly Report, ‘should not be generalized to the United States as a whole,’ they wrote.”

You got that right. The rates are probably much higher!
“Scientists had long estimated that 90 percent of autism risk was genes and 10 percent reflected environmental factors. But a 2011 study of twins by scientists at Stanford University concluded that genes account for 38 percent of autism risk and environmental factors 62 percent.”

Um, duh. Most of us parents have known this for years, since a majority of us do not have autism anywhere in our families.

From the Associated Press:  “The study also found that autism disorders were almost five times more common in boys. And that an increasingly large proportion of children with autism have IQs of 85 or higher - a finding that contradicts a past assumption that most autistic kids had IQs of 70 or lower.”

And now for the exceedingly annoying quotes...

From USA Today: “A professional group is now considering changing the diagnosis of autism spectrum disorders, eliminating some people on the milder end. If the formal definition is changed next year, the rate of autism will certainly fall, experts said.”

DO NOT GET ME STARTED on this quote. Don’t you just LOVE the idea that they can get rid of the autism epidemic by changing the criteria and eliminating some of those higher-functioning kids right off the spectrum? Grrrr…

From ABC News:  Dr. Isabelle Rapin, professor of pediatrics and neurology at the Albert Einstein College of Medicine said, “Not only physicians, but parents, teachers, therapists and the public are much more aware of the symptoms of autism, and I suspect some may apply the diagnosis based on one symptom, which is inadequate.”

Oh, good Lord. The things I could say about this quote. What I will say is that diagnosing professionals (pediatricians, neurologists, psychologists, etc.) have to follow the DSM IV criteria. If the proper criteria are not met, the child does not have autism. Period. To say that professionals are handing out autism diagnoses like lollipops is preposterous to me. Autism cannot be diagnosed based on one symptom. Anyone who does this is not a reputable and should be held accountable for medical malpractice. To allude that this is commonplace is just ludicrous.

From CNN:  Mark Roithmayr, president of the advocacy group Autism Speaks, says more children are being diagnosed with autism because of “better diagnosis, broader diagnosis, better awareness, and roughly 50% of ‘We don't know.’”

Uh huh. Better and broader diagnosis? Nope! The diagnostic criteria HASN’T CHANGED IN YEARS because the DSM IV hasn’t changed in years! The DSM IV was published in 1994 (with a revised edition published in 2000). We have had the same version for diagnosing children for 18 years! Doctors should know this manual inside and out by now. I cannot see how this is an issue, unless we have a huge pool of rogue diagnosticians making up their own criteria for autism (see quote above from Dr. Isabelle Rapin).
Then, there is the matter of this 50% that “we don’t know.” I will admit that there is a lot that we don’t understand about autism, but more children are being diagnosed with autism because more kids have autism! It’s not a diagnostic anomaly. It’s not a genetics thing. The huge increases seen in autism rates cannot be accounted for by genetics or better diagnostics.

Our kids are sick. And, not just neurologically sick. Most of them have significant medical complications that accompany their autism diagnosis. We have a systemic problem that crosses all boundaries, demographics, classes, races, and locales.

I know that there are many more kids with autism than the CDC will admit to, or can even begin to account for with their current reporting methods. We’ll just have to sit back and wait for them to report on today’s kids…years from now.  I wonder what the autism rates will be when they catch up to my kids? I shudder to think of it.

Want to know what the autism rate is at my house? 2 out of 2. 100% of my children have autism. And, that’s all I need to know.

Tuesday, March 27, 2012

A confused word

Prince Charming said something to me the other day that caught me by surprise. It was really cute, but in thinking about it afterward, I realized that what he expressed is not uncommon for those who are on the spectrum.

We were nearing the end of our morning routine and it was time to get shoes on before heading out to catch the school bus. I said, “Hey baby, can you go get your shoes please?”

Prince Charming gruffly retorted, “Why did you call me a baby?”

I immediately stopped what I was doing and turned my head to focus on him and process what he just said. Prince Charming had a scowl on his face, obviously displeased with my choice of words.

“Oh! I wasn’t calling you a baby because I think you’re a baby! I was using the word baby as a way to get your attention. It’s kind of like if I called you sweetie or handsome. I know that you’re a big boy!”
He responded, “Baby is a confused word." He thought about it for another few seconds and said with continuing disapproval, "That word is confusing to me. It’s a confused word.”

You know what? He’s right!
We haven’t had many instances of this kind of confusion around our house. Yet. I know that it is very common for people on the autism spectrum to interpret things literally. Prince Charming’s comment was not unexpected.

Titan and I tend to use a lot of creative euphemism. We even come up with our own replacement words to throw the kids off when we’re discussing things like what we’re having for dinner! It’s a strategic parenting trick that allows us to talk openly around the kids without them knowing every minute detail of what’s going on. I know that as the boys start to clue in more to our conversations, they will want explanations and clarifications on the subject matter. And, frankly, they’re so dang smart I figure they’ll have an accurate translation to everything we say soon enough.   
A day or two after Prince Charming told me about the “confused word,” I had a conversation with a young man diagnosed with Aspergers. He was playfully correcting my usage of certain words, explaining some of his personal vocabulary that more accurately fit the definition of the words. Seeing it from his perspective, it made total sense. It was really cool to get insight into an adult’s brain and better understand how they think and process information.  

I wonder when the next time something like this will come up with my boys, and how often we’ll experience these moments. We might end up having some very interesting conversations!
What is your favorite or most memorable moment when your child took something you said literally?       

Friday, March 23, 2012

Flashback Friday: Sensory Meltdown

Last year I wrote about a big meltdown that Prince Charming had while at therapy. I remember the incident vividly.

Even though I was among friends and fellow autism moms that day, I remember feeling pangs of embarrassment and slight panic as I tried to de-escalate him.

Thankfully, we haven't had one of those epic meltdowns in a while. I'll keep my fingers crossed that it stays that way.

Check out my post: Meltdowns Happen. 

Wednesday, March 21, 2012

Wordless Wednesday: Hypnotic Moments

The boys are enamored by our screen saver! Our TV is set up as our computer monitor. When this screen saver comes on they will stand motionless and stare at it for several minutes straight.
Instant quiet is a true blessing!

Wednesday, March 14, 2012

Guest Post: The Oxygen Mask Project

I got a pleasant surprise recently. I was contacted by the folks at The Oxygen Mask Project. They read my Not-So-Caffeinated Autism Mom post about how I was starting to put myself back on the priority list again, and they wanted to share my post with their readers. Very exciting news, indeed!

I love the concept for their site and their Facebook and Twitter communities. If you're on Twitter, check out #yearoftheoxygenmask.
Here is a direct quote from The Oxygen Mask Project site that speaks to their mission:

Once upon a time, a group of special needs moms started talking about their lives. They talked about how devoted they are to their children and to making sure that their kids’ needs are met. But somewhere along the way, they had forgotten to take care of themselves.

To care for others, you have to take care of yourself as well. Too often, we feel guilty as parents when we take time to do something that is just for us. But it’s how we can keep giving our best to our children.

If you’re anything like me, you have put yourself last in order to try to be a good mother and wife. This is especially true when you are a hard core people pleaser with a slight super mom complex. And, it makes things even worse when you throw autism into the mix. Sound familiar anyone?

When was the last time you put on your oxygen mask and took a breath? Maybe you should take a moment today and do just that.

You should start by heading over to The Oxygen Mask Project to read my post! Show them some Caffeinated Autism Mom love. While you’re there, I know you’ll get some self-care inspiration. So, what are you waiting for? Go! Now!

Monday, March 12, 2012

New autism prevalence numbers

Did you hear that the CDC is going to share their latest numbers on the prevalence of autism in the United States? The last time they released autism rates was in 2009, so an update is certainly due.

I read about this in an article from Disability Scoop, dated March 9, 2012. The snarky side of me wants to take bets on the day they will release the numbers, as well as what the actual numbers will be. Care to make a friendly wager?

Will the CDC release the new numbers in time for World Autism Awareness Day?
Or, will they mention it in some teeny byline on Tax Day (or some other newsworthy day), thereby diverting attention from the brand new statistic?

Will the CDC’s numbers show a significant increase, more closely mirroring the study done in South Korea that found an autism rate of 1 out of every 38 children?
I think it would be nearly impossible for the numbers to be “better” than they were. I keep hearing of new cases in my community almost every day and I have to believe that this is happening everywhere else, too.

What I really want to know is:
How high must the prevalence be in order to warrant a state of alarm across the United States?

When will people wake up to the epidemic of autism and see it for the burgeoning issue that it is?
Autism affects those with the diagnosis, their parents and families who care for them, the doctors who diagnose them, the professionals who treat them, the teachers who teach them, and the list goes on and on… 

When will every State enact legislative change in order to help this exploding population?
Here in Washington, we are still waiting for the right to not be subjected to medical insurance discrimination. Some day we will catch up with other States that have figured out that medically-relevant therapies are not only helpful, but necessary for those with autism.

Any parent of a child with autism can tell you that it is truly a life-changing experience to have a child diagnosed with autism. (In my case, more than one child!) Your life is different than you imagined it would be. It’s definitely not typical. It can be absolutely beautiful in unexpected ways, yet it remains a difficult journey for both you and your child. It really is a spectrum of experiences, with each one unique.
I’ll leave you with a quote that a Facebook friend of mine shared (which I immediately stole for my own profile after I read it!):

If 1 out of 91 children were being kidnapped, we’d have a national emergency.
We do. It’s called Autism.
When will the prevalence of autism become a national emergency?
I’m still waiting for that day… 

Thursday, March 8, 2012

An observation about advocacy

Through the work I’ve been doing at my nonprofit, I have been very involved in educational advocacy. I can honestly say that I feel like I’ve been swimming in the advocacy pool and my fingers are getting pruney from it!
Any parent who has ever attended an IEP meeting knows that things can sometimes get very intense, especially when you do not agree with the school district’s recommendations for your child. Often those situations can be difficult to navigate and are full of emotion as you try to do the best you can.

I can tell you that my personal experience with getting my boys the education they need and deserve has been more positive than most people I know. I realize how fortunate I am to be able to say that. It hasn’t been perfect, but it could be a lot worse!  

As an advocate, I have sat through a variety of meetings in several school districts. One thing keeps coming to mind:
In an IEP meeting, why are informed and knowledgeable parents treated in an adversarial manner?

Now, this doesn’t happen all the time. In fact, I’ve been witness to some wonderful moments where things work well because the district recognizes the value of parental input.
Unfortunately, this is usually not the norm. To me, it would seem logical to expect that parents who are active participants in their child’s educational process would be treated as collaborative partners in the shaping of the IEP. Parents are often a very rich source of information about their child and much can be accomplished with a positive approach.

As a parent, you are an expert. It may not feel like it, but you are! If you have gone through the process of diagnosis, read every book you can get your hands on about the diagnosis, and have participated in various forms of private therapy in order to help your child, you are an EXPERT. If you feel like you don’t know anything because your kid is melting down again and you don’t know how to handle it today because your usual tricks aren’t working, you are still an EXPERT on your child.
Parents can be overwhelmed by the IEP process because it’s full of legal mumbo jumbo, there is vocabulary that is difficult to understand, and there are a lot of people in the room who have letters behind their name. It’s intimidating, for sure. God forbid you hear horror stories from your friends who have had awful IEP experiences! It’s a safe bet that you will feel some level of fear or dread as you participate in that setting.

When parents are able to claim a sense of expertise and power, they can ask insightful questions and help to effectively strategize with the rest of the team, which leads to positive changes for their child’s IEP. This is, of course, when things go well. Many times they do not go well. And then, that smart, powerful parent turns into an adversary in the eyes of the district.
I hate to see this happen! In my experience, and that of some of my colleagues, this can happen more often than not. The opportunity for improving a child’s IEP (and their school experience) is wasted. And it’s sad.

I don’t really have a well-developed idea to go along with this observation. This has been mulling around in my brain for a very long time now and I figured it was time to at least start the conversation. I haven’t prepared some glorious argument about what this means to me, or a list of tips and tricks to combat this kind of situation. I just wanted to share the idea of it. It’s food for thought. It’s not a complete thought. It’s a work in progress.
Educational advocacy and IEP’s are such hot button issues, that I’d be interested in your thoughts. Do you agree that sometimes the parent can be seen as the adversary? How do you respond to that? What things have helped you get what you needed for your child’s education? Feel free to share in the comments below.

Friday, March 2, 2012

Flashback Friday: Think Pink!

We made it to Friday! Happy happy, joy joy!

One of the things my boys love to do on the weekend is watch Pink Panther after breakfast. They like to have cuddle time with daddy in the big recliner under a fuzzy blanket while they watch their show. With 2 very warm boys in his lap and a jazzy, dialog-free cartoon playing in the background, Titan usually catches a quick nap. It's a nice, mellow routine for a weekend morning.  

Click here to read about how we rediscovered Pink Panther and why it's one of our favorite cartoons.  

Hope you have a great Friday and a great weekend!

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