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.

16 comments:

Luna said...

Perfect. This is exactly right, and you are awesome. I'm not even going to bother writing a post, I'm just redirecting people here. :)

It's 100% at my house too. 3 for 3. And it probably is genetic in our case - it's prevalent on my side, and scattered and undiagnosed on my husband's side.

That being said, in the complex I live in, accross the street from a goddamn golf course and its pesticides from hell, 100% of the families with kids have some sort of issue. There are 12 kids. And to the best of my knowledge, 3 of them are healthy. Of the other 9, there's autism, tourette syndrome, tumours, and more autism. Three quarters. It's also interesting to note that two of the three healthy ones moved in AFTER they were born. i.e. Mom didn't breathe in all the toxins while pregnant.

It's truly sad. And I don't care what the "neurodiversity" people say.

Lizbeth said...

I saw this too and my first thought was, "Well great, I might as well go watch Red Dawn to get ready for the Cold War." Sarcastic, I know but really?

Try telling me something I don't know.....not you---the studies!!!

I heart you!

Lanie Litwin said...

Great post! Once again you nailed it! How is it that us " laymen moms" can read the entire report and understand the implications and ramifications but the main stream press and media can't? #youmightbeanautismparent if you can read a study better than a journalist. Idiots.

Caffeinated Autism Mom said...

Hey, folks. I wanted to add this comment that somehow disappeared. I saw the comment notification appear in my email but never saw the comment show up on my blog. I don't know what happened, because I didn't delete it. For all I know, the commenter deleted it... But, since she took some time to write it all out and I'm not sure if there was a glitch, I wanted to make sure that her comment shows up.

If anyone has anything they'd like to add in response to this comment, feel free to. As for me, it's a lot to digest right now and I don't think I can do it justice without a little thought first. My kids are a little too amped (and noisy) for me to engage my brain at the moment. So, I'll give it some time and come back to it.

I will post the comment now...read on please.

Caffeinated Autism Mom said...

From Anonymous:

I want to make it clear that this comment is truly my trying to ask an autism parent- I'm not trying to judge/say someone is right/wrong or that there is only one "best" way to deal with things, I just am curious as to your opinions coming as someone who deals daily with children with autism. I read your blog, but do not have any kids of my own (still going to grad school)but I have discussed autism with many different people. My roommate is a special education teacher at an all-special needs school in the city. I do scientific research (not strictly on autism per-se, but have done neuro-developmental studies, etc) and work in a gov regulatory agency. I think it is interesting and difficult to pin-point in that disorders like autism are so multifaceted in that there is no one cause be it a genetic aberration (such as the number of extra protein repeats directly correlates Huntington's severity and on-set) or environmental factor (it's all over the US and abroad in a variety of households).

My question/opinion to you would be this- I can hear your frustration coming through your post, but what would you prefer the money go to? Budgets are stretched so ridiculously thin in some places, and there is so much time involved (which I am sure you know) collecting data, checking the data sources, analyzing, checking the input, analyses, etc. By the time you do all the paperwork and legwork it easily takes years to compile this data. I personally would rather see a limited study sample like this that costs less and can come out "faster" than a study doing all states and a wider age range that takes autism money away from other programs (i.e. classrooms, community outreach/programs, etc). Would you rather see a more thorough study because you think it would change policy more? (please remember- I am truly asking as to what your opinion is as someone who deals with this daily; hard to convey this tone correctly through the computer).

My other comment would be to address the 50% unknown comment. I understand that as a parent that must be truly frustrating to read. I know that you have done extensive research on your own time about autism. However, I think that part of that 50% of the unknown would include lots of areas, such as all of the new types of RNAs in the last decade (ie miRNAs), or even just the field of epigenetics- the way in which an individual's genetic code is expressed (ie the way all of a person's genetic code plan is put into action and maintained). I was at a class at the NIH on this last year, and it is so intricate and so much is still unknown because a lot of the technology is still new that the costs are just starting to come into range of where extensive research will become a possibility. So you say it is not genetics, but there is still a strong possibility that there is something at a smaller level that has a global impact on neuro-development.

I know that this is probably the longest comment ever (sorry) but one last question- Do you as a mom of children with autism think that restricting the diagnosis will allow your children better support? So if re-defining DSM criteria does "eliminate" some children, do you think insurance companies/schools/etc would be able to better support those children that still meet the "appropriate" autistic criteria? (not that there truly is such a thing). So if there were a separation of asperger's and autism diagnoses with each getting their own allotment of funding, do you think this would allow for better use of the available financial resources for those still meeting the autism criteria?

I am sorry this was such a long post. I am not trying to offend anyone in any way- I really would like to know what you think as a mom of children with autism who has educated herself about autism (vs the people I talk with primarily being more scientists and educators). If you do not want to respond to my post, or would like to delete it I would understand.

Thank you,
Heidi

Cari from Bubble Gum on my Shoe said...

CAM- Well done, well said. I've nothing more to add. Yesterday I had a pit in my stomach and chose to ignore the hype, simply because I would've broken into tears. It is alarming! If Autism were contagious (it's not people) you bet your bottom dollar companies/government, etc. would be making this a priority. We are left to fight for our kids, because if people aren't directly affected, they ignore it. Autism has no face, so we must advocate. Soon almost everyone we know will be affected.

Cari from Bubble Gum on my Shoe said...

Heidi-

Thanks so much for taking the time to write and inquire. As a parent of a child on the spectrum, it always warms my heart when people are interested or just ask anything.

I'm just going to admit, most of that was over my head. I don't presume to know which test is best or which genes to splice or study; that is not my area. And as educated on Autism as I have made myself with my own research, I am only that, self-educated and only an expert on my own child with Autism. Autism is fickle, no two children are alike or have the same symptoms.

At this point this is what I'd like to see: An Autism parents life revolves around paperwork. We are constantly filling out a myriad of questionnaires, so there is no misdiagnosis mind you. I would bet all the money I have in the bank that parents of children with Autism would be willing to do a online questionnaire or study about symptoms, genetics, pre and post natal and development, etc. We're pretty darn quick because we know it all like the back of our hand. They'd be all over it, no incentive required other than to find some common thread and perhaps we could move forward from there. And yes a broader scope for sure. Studies have shown Autism rates higher in some areas and states than others, so we do need to include everyone.

Our pediatricians need to be trained to deal with and perhaps not diagnose but spot the symptoms of Autism. A general pediatrician will not diagnose Autism. It is not something you do in an hour. Developmental Pediatricians do the work as well as other trained health care professionals. To the best of my knowledge, doctors are still taught the same old crap that is over 20 years old when it comes to Autism in medical school.

Changing medical diagnosis won't do anyone any good as far as I can see. Change in healthcare and insurance coverage need immediate attention. Our kids can barely get the minimum required therapy needed as is and insurance is cutting Autism out of covered services by the hundreds and thousands every day. Just ask CAM here, she gets an automatic denial. So maybe just a nod that this is an epidemic and that OUR KIDS NEED SERVICES NOW! The diagnosis for cancer is still cancer.

I cannot tell you anything without bias, because my life and my son's is directly affected by Autism. And while it has shown me many blessings, it has also robbed my son of so many things in life. So do not take this the wrong way when I say I don't care what gets done, but do something. I feel like these kids are tossed aside and ignored. That is not adequate in my book.

So I have no concrete answers to your questions, and for that I am sorry. Thank you so much for wanting to help, and for doing what you do. You will do great things in this lifetime. How about a Nobel Peace Prize for finding the cause of Autism? :)

Caffeinated Autism Mom said...

Cari, thank you immensely for weighing in here! I sincerely appreciate your thoughts.

Heidi, I respect your questions and your comments. I really do.

What I'm planning to do is write up something as a follow-up to this post for early next week. I will take some time to consider what you have said, what others have added, and then weigh in with my own commentary. My hope is that we can have a great dialog about this.

Autism parents can often feel at odds with the scientific community because no one ever seems to hear what we are saying. It can get very frustrating and very old, very fast. This kind of sentiment was obvious in my post today. Let's just say I don't have a very good blog poker face!

So, in an effort to share perspectives, I will take the time to go through each of your points and address them very soon. I promise.

Heidi, thank you for being willing to ask the questions and for being respectful enough to recognize that this could be a touchy matter for me and those like me.

Andi-Roo said...

The conversation in the comments is as interesting as the post itself. I do not have children with autism, nor am I associated with anyone diagnosed as such, but I do find myself fascinated by the topic. Hope that's not morbid --- I mean it in a curious, I want to learn more about it, kind of way. I appreciate all the input here & will be looking further to see what I can do to help in this cause. Thank you for enlightening me & bringing this topic to the world's attention.

Andi-Roo /// @theworld4realz
http://www.theworld4realz.com/
theworldforrealz@gmail.com

Jen @ TheUnProcessedKitchen said...

I had a similar response; I just had to stay off line for a few days. Everyone who knows about Autism talked about the study; and everyone else just kept not knowing anything. I feel like I have an entire post I could write as a response; but frankly, I am just weary right now. WHY isn't this moving forward? WHY is that the 'most comprehensive study conducted to date'? It's just so frustrating and sad.

Anonymous said...

Hello,

I left the really long post in the comments last week- I didn't delete it so it must have been a computer glitch. I really appreciate that you are going to address my many questions, and that you have all taken my questions in the spirit in which they were intended. I have had to play the games with insurance companies myself, so I have an inkling of how much red tape and time that takes.

I really am interested because you all seem to be such an involved and active group of parents who want to help you kids. I have lived with a girl who was autistic in college but her parents didn't empower her enough, and my roommate teaches children with autism (and other special needs) whose parents are not able or willing (financially) to help their kids.

Thank you,

Heidi

Ponypony87 said...

Sorry, I actually logged into Google now.

Heidi

Caffeinated Autism Mom said...

Heidi,

Thanks again for checking in. It is appreciated. I have been swamped today, but hope to wrap up my response either tonight or tomorrow sometime. It might not post until Wednesday though. I'll have to see how it goes. I'm sure we'll chat then. :-)

Emilee T. Leeper said...

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devendra singh said...

Everyone who knows about Autism talked about the study, Autism is a complex condition of the brain that has various possible causes. It cannot be diagnosed just by one symptom alone.browse this site The study also found that autism disorders were almost five times more common in boys.

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Autism is a complex condition of the brain that has various possible causes. It cannot be diagnosed just by one symptom alone. learn blogpost The whole world seemed to be talking about the flu and quickly mobilizing to deal with the perceived problem.

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