Autism epidemic, continued

Last week I told you how I felt about the new autism numbers per the CDC. In case you missed it, the prevalence of autism is now 1 in 88. My post prompted a rather lengthy comment from Heidi that I felt needed further discussion. I reached out to my blogger friend, Cari from Bubble Gum on My Shoe (an awesome gal who has done guest posts for me before – here and here), to help me field the questions that Heidi posed. Without skipping a beat, she got right to it and added some great value to the discussion. Unfortunately, my mind doesn’t work that fast and I needed a bit more time. I want to continue on what Heidi and Cari started, and weigh in with my own thoughts, too.

Well, what I didn’t realize is how much I would have to say about this! My post got to be out of control and way too long for any sane person to read. In an effort to save you from reading for over an hour, I broke up some of it into a separate post on Monday to coincide with World Autism Awareness Day.

So, now I’ll bring you back to the original comment that spurred this on and begin the discussion. Get ready....here we go!

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.

Environment is a top suspect in autism

Finally! And perfect timing, too. The National Institute of Mental Health dropped a bomb about autism on a national holiday. How convenient. When most of us were having picnics and spending time with family in preparation for Independence Day fireworks, the NIMH decided to quietly “surprise” the public with the fact that the environment is now considered a main causation of autism, more than genetics.

I think the Managing Editor of Age of Autism said it best:
Autism affects upward of 1% of American kids today. There "is no cure." There is no test. There is precious little hope for treatment in mainstream medicine. It's a crisis for America the likes of which we have never seen. And so the NIMH puts out a press release ON A NATIONAL HOLIDAY. Meanwhile, how many of our kids are cowering under a bed right now instead of reveling in the fireworks and family celebrations because of their autism? And what does THEIR independence look like tomorrow?

From The New York Times: The new study marked an important shift in thinking about the causes of autism, which is now thought to affect at least 1 percent of the population in the developed world. “This is a very significant study because it confirms that genetic factors are involved in the cause of the disorder,” said Dr. Peter Szatmari, a leading autism researcher. There has been growing acceptance that genes do not tell the whole story, in part because autism rates appear to have increased far faster than our genes can evolve.

From the San Francisco Chronicle:
Environmental factors play a more important role in causing autism than previously assumed and, surprisingly, an even larger role than genetics, according to a new study out of UCSF and Stanford that could force a dramatic swing in the focus of research into the developmental disorder.

Does this come as a surprise to anyone? Anyone? Anyone? Bueller? Heck, no! Apparently the scientists were surprised. ((insert sarcastic “DUH!” here))

Parents like me have been saying the environment is a problem for years. I can’t think of a single parent of a child with autism (and trust me, I know a lot of them!) that believes their child’s autism is purely genetic. Most believe that the environment is the culprit. If it was not the reason, than it was one of the top reasons. I believe this to be true in my own family with both of my sons.

My own personal opinion is shared by many others: genetics loads the gun and the environment pulls the trigger. I definitely think there is something to be said about genetic susceptibility and environmental assaults adding to toxic load, ultimately leading to an autism diagnosis. I wrote about this and other things when I reviewed Jenny McCarthy’s book, Mother Warriors. Here’s a little snippet from that post:

The way I like to think about autism is that our kids each have a row of dominoes stacked just so, with each one a possible trigger or tipping point. There are many dominoes, and each domino on their own is seemingly insignificant, such as: allergies, reflux, eczema, ear infections, diarrhea, food intolerances, asthma, chemicals in the home, pesticides on our food, heavy metals exposure, fluoride and chlorine in our water, candida overgrowth, the vaccine schedule, genetic predisposition, etc. The list seems to be endless and I have by no means included everything that could ultimately be involved. When one or more of these dominoes gets bumped and the dominoes are close enough together for the bump to make an impact, I believe it triggers the cascading fall into autism. The sum of all of the parts equates to a life-changing diagnosis.

As a parent, studies like this have 2 sides. First, they are extremely gratifying. They prove that the hardcore parents who research endlessly for ways to treat and help their children with autism are not the crazed lunatics they are made out to be. In most cases, the medical system has failed them. The parents keep vigil on behalf of their children, paving new roads for their care because no one else will, and yet they’re made out to be a villain for doing so because it goes against the grain. We are justified. Our choices are sound. In fact, we were right all along!

Second, the other side is that studies like this are extremely frustrating. Sometimes they feel like a huge waste of time and money, often proving what most of us already knew to be true just by living our lives with our children. It doesn’t help us get through today or tomorrow any better.

I understand the need for scientific study, especially since my original choice of study and intended career were in Biology. I get it. We need the scientific process. But, I am now a bit disillusioned by the whole thing. Frankly, I don’t really care all that much if there is a higher incidence of autism in families who live near the freeway or that autism and birth order might be related. I care about helping the generation of children with autism and their struggling families TODAY.

As Jenny McCarthy said in her book, “People can say there is no science to support our beliefs about the causes of autism and ways to treat it, but there is plenty of evidence. Just walk into the homes of families who have children with autism. They’ll be happy to introduce you to their science.”

I will say that I am happy that they are starting to figure it out. Keep coming our direction, highly-paid executives, doctors and scientists. We’re waiting for you! In the meantime, all of us parent warriors will continue blazing our own trails and hope that eventually the mainstream medical and scientific community will catch up to us someday. They’ll finally figure out that we were right all along. Gee, won’t they be surprised?   

P.S. I found some additional content at the 11th hour after I'd already completed this post. Rather than re-write it to cleverly include the new stuff, I'm just going to place it here at the end and save myself the time.

I stumbled upon another great read about this issue and highly recommend you check it out! Lisa Ackerman, the founder of TACA, did a great job summarizing this study and how we can move forward with this "new" information. She quoted a physician who recently gave a lecture she attended and I love what he said. “If an adult stopped talking or regressed in their skills, physicians would order a myriad of tests including an MRI.  When a child regresses or stops talking we just call it autism.”

This is the very attitude that is pervasive among pediatricians today and it needs to stop. That's my 2 cents. Or maybe we're up to a full dime by now! Anyway, please feel free to leave your comments below and add to this rant discussion.     

Crazy recycling lady

Did you know I’m famous? I even have my own commercial!

OK, so maybe it isn't me... If you are from the great Pacific Northwest, you are likely familiar with the "Northwest Profiles" commercial series from PEMCO Insurance. If you've never had the pleasure of seeing these commercials, you should really take a moment to click on the ones I have posted in this entry. I have seen every one of the characters in the series and they are hilarious to watch because they are so absolutely true to the northwest! I swear I've seen all of these people in some form or another around town before! You can view all of the characters here.

As an aside, I may also bear a very slight stunningly similar resemblance to the "Super-Long Coffee Orderer."  

But, I digress.

The “Relentless Recycler” is an avid recycler, bordering on the OCD side of life with her zeal for sustainability. I have a real passion for many environmental issues, particularly since my husband’s cancer diagnosis and my boys’ diagnosis on the autism spectrum. And, I have been known to gush about my love of recycling from time to time. I know I’m weird, but that makes me extra cool! ;-) Right? Well, maybe in my own head anyway. If I had the same amount of space this Relentless Recycler gal had in her garage, I might be just as awesome bad as her!

To bring things into perspective, you should probably know that I grew up in Oregon. Have you ever heard of the Bottle Bill? Passed in 1971, Oregon's Bottle Bill imposed a 5-cent container deposit on each canned or bottled beverage. You would pay the deposit when you purchased your soda or beer, and then you would gather up all of the empty cans and bottles to redeem for a cash refund. After all, you were a good recycler and a good Oregonian at that! One great effect of the legislation was that it helped to significantly reduce littering.  

Recycling cans and bottles was a great way for a young gal such as myself to earn a little spending money for things like candy bars and other childhood treats. I would gather our family's recycling together with whatever cans and bottles I found as litter. When the pile got large enough my parents would take me to the grocery store to go return them all. I would head to the back of the store where they accepted the cans and bottles and a guy would take them, counting and sorting them into large bins. It was always exciting to find out how much I had earned when he’d write up my redemption slip. I’d take the slip up to the front of the store and the cashier would pay me that amount. It was the beginning of my love for recycling.

Now I live in Washington state and we don't have a Bottle Bill here. I am happy to say that not all that long ago our local refuse company began single bin recycling (where you can throw everything recyclable into one large, mixed container). This makes life much simpler than a few years ago when I was still diligently sorting things into their separate containers. My boys are happy to help toss things into the bin as they accumulate. And, I am happy to say that we recycle at least twice as much as we throw away, if not much more!

The one problem with the single bin system is that they no longer accept glass bottles and jars as part of our regular recycling program. We go through a LOT of glass at our house, particularly with all of the organic products we use. Glass is a popular vessel for all of the crunchy environmentally-conscious companies that make many of the products we buy. So, I continue to sort out the glass containers and then take them to a recycling station. It’s always fun for my boys to help me sort the glass into their clear, brown and green bins when we get there.

I’ve even gotten my neighbor’s daughter involved in glass recycling. I babysit her on occasion and one of those times the glass recycling crates in my garage were overflowing. I asked her if she’d like to accompany me to the recycling station. She was super excited to go on a little excursion with me in the car and then help me sort the glass when we got there. It was so cute! She chattered about it in the car all the way back home. When she got picked up that afternoon she told her mom about our adventure and asked me when we would go recycle glass again. Now, almost every time I see her she asks me if I have any glass that needs to be recycled and if she can help. I think I may have a recycling protégé!     

Are you skinnier and more organized yet?

It's the last day of January. How many New Year's resolutions did you make and break? My record is perfect - zero made, zero broken. But, I've made changes! The following is a re-post of an entry I did earlier this month on my local support group's blog. I thought I'd recycle this one for the Caffeinated Autism Mom crowd. Find out why I don't make resolutions anymore. Enjoy! 

Well, here we are. It's 2011. Once again, it’s time to plan how we will fill the blank pages of a new year. I went out to shop some of the after Christmas sales and found that a majority of the stores already had made the move from Santa’s red and green Wonderland to the Pepto-Bismol pink glow of Valentine’s Day. Besides the change in holidays, I repeatedly saw items related to fitness and organization. There were stacks and rows of plastic storage tubs and boxes, wicker baskets, yoga mats, water bottles, heart rate monitors and more. Does everyone in the US resolve to the do same thing year after year? Get fit! Get organized!  Are we that predictable? 

I think so. I was one of those people. Every year I would resolve to be healthier, among other lofty and unattainable goals. Inevitably, I would disappoint myself. My resolutions were typically busted by the second week of January. What can I say? Willpower is not my forte.

Things changed for me about 5 years ago when my husband was diagnosed with lymphoma. For his 30th birthday, the gift he got was recuperation from surgery and the anticipation of chemotherapy and radiation. Needless to say, it was not a banner year for us. However, something happened to me that changed me forever. In my quest to help my husband, I opened my eyes, ears, and mind to things I never gave a second thought to before.

It was this forced awakening about things like toxic load that prepared me to make significant changes when we received the diagnosis for our boys. In learning about autism and changes I might need to make for our kids, I realized I’d done this before. It wasn’t as overwhelming the second time around. Yes, it sucks and it’s really hard, but I’m a combat veteran from cancer. I got this! At least I hoped I did.

Where to begin? Clean up your environment. What do you eat? What do you drink? What do you put on your body? What do you allow into your home? Changes are needed in droves! Cue the resolutions!

As I mentioned before, resolutions and I don’t usually get along. So instead of resolutions, I now make an agreement with my husband about what issue we want to take on over the course of a year. Then we set out to do the things necessary related to that issue. You know, accountability. Two heads are better than one. That kind of thing. And, these ideas are permanent changes that we incorporate into our lifestyle. Resolutions don’t work for us, but tangible planning in unison does. What does this look like in action, you ask? Well…

Three years ago we dealt with the air we breathe. We installed a hospital-grade whole house air filtration system. We also bought in-room air ionizers and several Himalayan salt lamps.

Two years ago, we tackled food and chemicals. We had already made the switch to mostly organic produce the year before, but then I made a newly concerted effort to buy exclusively organic products whenever possible. We’re talking organic grass-fed meat, wild-caught fish, free-range organic poultry and eggs, replacing all of my spices with organic ones (which aren’t irradiated!), etc. We switched out all of our cleaning products, detergents, beauty products, etc., to ones that are plant-based, non-toxic and non-chemical. I even went so far as to carry the new standards over to my lawn and yard care products. Chemicals be gone!

Last year we focused on water. We installed charcoal filters on our shower heads to filter out the chlorine that our body was exposed to both topically and as a gas when we took a shower. We had already made the switch from tap water (chock full of fluoride and chlorine!) to spring water with naturally occurring minerals and a pH just a hair on the alkaline side of neutral. We used spring water for drinking and cooking, and typically went through a gallon a day, sometimes more. That gets expensive, especially when the government enacts a water tax on every ounce of bottled water you buy. As a result of the tax, something we’d talked about before as a “wouldn’t it be great?” item for the house became much more reasonable to entertain. We ran the numbers and decided to buy an atmospheric water generator. Yes folks, we make our own water from the air. It’s filtered in a multi-step process (reverse osmosis, UV, etc.), it adds minerals back in, and it has instant cold and instant hot spigots that you can set to whatever temperatures your heart desires. No more tea kettle for me! Now I water my plants with this water, we cook with it, we drink it, and not only is it good, we know it’s safe.

Now, we’re here at the dawn of 2011. What’s the plan for this year? We’re changing how we cook. I just bought some frying pans that don’t release PTFE when heated. The old non-stick pans are gone! I already acquired some cast iron and stainless steel pans over the past few years, and we’ve switched our daily usage containers from plastic to glass. We also took a big risk to our sense of convenience, and unplugged the microwave. I bought a toaster oven that has convection, and will use it to replace my dying toaster and my food-destroying microwave. It’s also large enough to replace my oven on most things (which will save energy). There will definitely be a learning curve here, as we’ve come to rely on the ease of tossing something into the microwave at the last minute. This change will require a little bit more planning and time, but we agree that it’s a good change and we’re willing to take the plunge.

The kinds of changes we’ve made at our house are much too intense to take on all at one time. By breaking things down into steps we can manage, we continue to better our household without incurring major sticker shock. It’s much easier and less overwhelming that way. I wonder what we’ll change for 2012? Who knows? I’ve got a whole year to think about it, and besides, I need to become an expert with my new style of cooking first.

Here’s to resolving to make permanent changes! Happy New Year!