28
Mar
14

The CDC has new numbers for autism

Every time the CDC publishes a report with a new ratio for how many children are diagnosed with autism, I see a massive posting about it in my newsfeed on Facebook. This is because many of my friends on Facebook either have autism themselves or have children with autism. My friends span the political spectrum (Yes, governmental political spectrum as well, but I’m talking about autism politics). So, every time numbers come out, new panic arises among a certain sect of the autism community–namely those who are against vaccines as they believe that autism is caused by vaccines. However, just because they believe it to be true, doesn’t make it so. And every time numbers come out, I feel like I have to defend my right to exist as well as my children’s right to exist. Those who insist on instilling FEAR of autism make me feel like they wish *I* and my children didn’t exist.

This is what I posted on my timeline after reading the news about it online.

forblogpost1JPG

 

I have omitted the names of those who have commented on my wall, etc. as I do not wish to embarrass them or cause them any drama! Not my point here. Note how the parent of a child immediately went to the “but you’re excluding those with severe autism!”

What I responded with is true and factual. What she wrote was true and factual. However, there was a lot left unsaid.  And even after this blog post, I suspect I will not have addressed all aspects. If there’s any you wished that I bring up but didn’t, feel free to post in the comments on the blog.

In fact, one article quoted the CDC report thusly: “The largest increase was seen in children who have average or above-average intellectual ability, according to the CDC. The study found nearly half of children with an autism spectrum disorder have average or above-average intellectual ability — an IQ above 85 — compared with one-third of children a decade ago.”

Now, I know that “severe autism” does not necessarily mean “low IQ”. However, it can appear that way. If a person is so severely and pervasively affected by their autism, it is not likely they will score well on an IQ test. So, it seems the CDC is actually stating the rise is in “higher functioning” autism. Of course, in this parent’s own post on her timeline, that was overlooked entirely.

This is what she posted on her timeline. I’m not sure if she wrote it (she didn’t quote any source, either herself or another) but it does look like “talking points” type of post that many people will copy and paste to help spread fear of autism.

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Let’s take it one line at a time, shall we?

“If 1:68 people suddenly lost the ability to use their cell phones, panic would ensue.”

Yeah, because the loss of the ability to use a gadget equates to a neurological condition, how? Panic would ensue, don’t get me wrong. I know a lot of autistic folk use gadgetry to survive in this world and not just for its entertainment value, either. But I don’t see this as a good analogy for what they’re trying to convey at all.

“If 1:68 homes suddenly lost power, there would be “experts” seeking answers & researching solutions.”

One would infer from this that there are no current “experts” seeking answers and researching solutions. That would be false. There is millions of dollars being spent all the time on research. Even research that would develop a test to determine if a fetus has autism so that the mother has a “choice” on whether or not she *wants* a child with autism, because.. ya know.. we’re so difficult and cramp a woman’s style. We destroy marriages! We drain all your retirement savings! Because ya know, we’re not worth the cost.

“If 1:68 Homes were destroyed by a natural disaster at this exact minute, we would see a nationwide state of emergency.”

So, we’re a natural disaster now? Wow. Okay. But yeah, a state of emergency would be declared because homes were destroyed by a natural disaster. Is your home destroyed by an autistic child/adult? It’s possible as some do have behaviors that would put holes in walls, etc. But there is a way to correct that! And not every child (not every 1:68 child with autism) has those behaviors.

“If 1:68 people died from a “mysterious illness”, it would be breaking news.”

Well, you betcha! But when was the last time someone died from autism? Never. No one has ever directly died from having autism. Some people have been murdered because they have autism. Yep, but that’s not the same as dying from autism. Again, just another fear tactic.

“With the CDC reporting that autism is prevalent in 1:68, where’s the panic? The researchers and solutions? “

Um, I know many researchers are out there. There is some great researchers at the Kennedy Krieger Institute, for example. And they’re not alone. Remember, Autism Speaks spends MILLIONS of donated dollars to research, according to their supporters. So, who do you think they are paying that money to? Families who have children on the spectrum? Nope! People with autism? Nope! Researchers.  And the panic is there, too.

“Where’s the nationwide state of emergency? Where’s the breaking news?”

Again, this does not warrant a nationwide state of emergency. Besides, FEMA only pays for things like housing, food and other shelter. Autism does not cause one to lose their house, food and other shelter. This makes NO sense. As for where is the breaking news? On CNN, MSNBC, FOXNEWS, ABC, NBC, CBS, HLN,  and talk radio shows. It’s been covered since the report came out the day these snapshots were captured. You’re talking about because you heard the report being reported on, during a news segment, or most likely read an article about it online. That’s where your breaking news is.

“And to think, it’s even worse than the 1:68 that the CDC is admitting to with their latest reports. You see, they changed the diagnosis criteria trying to skew the numbers.”

Well, yes, let us think. Did the criteria change? Yes, the DSM-V did change the diagnostic terminology and criteria. It was NOT to “skew the numbers” at all but to clarify them. Because there are many parents doing diagnosis shopping. They *want* an autism diagnosis for their child. Or an adult *wants* an autism diagnosis for themselves. They don’t want to be left out of this newest trend! And that causes some challenges.

The criteria was changed in 1994 to include “Asperger’s Syndrome” among other changes. And it was not to skew the numbers then either.  To quote: It was the culmination of a six-year effort that involved more than 1000 individuals and numerous professional organizations. Much of the effort involved conducting a comprehensive review of the literature to establish a firm empirical basis for making modifications. Numerous changes were made to the classification (e.g., disorders were added, deleted, and reorganized), to the diagnostic criteria sets, and to the descriptive text based on a careful consideration of the available research about the various mental disorders. Developers of DSM-IV and the 10th Edition of the International Classification of Diseases (ICD-10) worked closely to coordinate their efforts, resulting in increased congruence between the two systems and fewer meaningless differences in wording. [emphasis added]

I know a lot of people who believe vaccines directly cause autism do not seem to believe that empirical basis is needed in studies, but it is if the study is to be believed as scientific. Because of the changes in 1994, many people were added to the spectrum who may not need to have been there. With the changes mentioned in this post, to the DSM-V, things WERE changed. But again, it was not to skew numbers. It was to clarify them.  To quote:

“How were decisions made about what would be included, removed, or changed?

APA’s goal in developing DSM-5 is an evidence-based manual that is useful to clinicians in helping them accurately diagnose mental disorders. Decisions to include a diagnosis in DSM-5 were based on a careful consideration of the scientific advances in research underlying the disorder, as well as the collective clinical knowledge of experts in the field. Advances in the science of mental disorders have been dramatic in the past decades, and this new science was reviewed by task force and work group members to determine whether diagnoses needed to be removed or changed.”
[emphasis original to source]

Please note that the clinical knowledge of experts was used.  So, the outcry for researchers and experts is being addressed.

oh! And to note, the definition of autism used in 2012, when the ratio was 1:88? They used the same definition this time, so no, they didn’t actually change any criteria to skew the numbers in the CDC’s report. So, whether this referred to the criteria in the diagnostic manual or the CDC’s report, it’s not true.

“They only estimate based on 14 states out of 50..and last, but not least- the data they released this information is based on data from 2006! That’s right, no child born or diagnosed after 2006 was even included in this report. “

Not True. It was 11 states out of 50. To be exact: Alabama, Wisconsin, Colorado, Missouri, Georgia, Arkansas, Arizona, Maryland, North Carolina, Utah and New Jersey. You will notice that population varies by state and so we get an average population rate, and averages are used in *every* CDC report. They take a sampling from each state that they sample every time they make this evaluation. They randomize which states they sample, too. This is called randomization and it makes a review more reliable, actually.  And they used averages in their final ratio, too. “The incidence of autism ranged from a low of 1 in 175 children in Alabama to a high of 1 in 45 in New Jersey, according to the CDC.” The average of their sampling came out to 1:68. This randomization and averaging helps weed out some variable factors. And repeat the claim before moving on to next point:

“They only estimate based on 14 states out of 50..and last, but not least- the data they released this information is based on data from 2006! That’s right, no child born or diagnosed after 2006 was even included in this report.”

Actually, no the data was not from 2006. It was data obtained in 2010 from children who were born in 2002, making them all 8 year olds. A lot of factors were included and assessed in the CDC report. ““We look at all of the characteristics of autism,” says Coleen Boyle, the director of the CDC’s National Center on Birth Defects and Developmental Disabilities.

“So we look at the age in which they’re identified. We look at their earliest diagnosis. We look at co-occuring conditions that these children might have, other developmental disabilities, whether or not they have intellectual disability, so essentially their IQ.””

And no, they are not going to look at children born after 2006. They are looking at 8 year olds, every two years. And to make sure they have complete records, they look at data once these children are 10 years old. So that means, those children who are eight years old in 2006, will be reviewed next time. And children who are born after 2006, will be assessed later.

Why? Because children are still only getting their first diagnosis, on average, at age four.  So that plays a factor at what ages they need to study. They want to make sure that children have had the time to get their diagnosis in. The CDC pushes for early detection as it is believed that the sooner a child is diagnosed, the better off that child will be once he or she becomes an adult. They track the progress of their push by evaluation of older children. Also, most importantly, they started with 8 year olds. So, if you’re going to compare eight year olds from 2010 to one year olds in 2014, kind of hard to get a direct comparison there to get accurate data. Accuracy actually matter in the sciences. I realize it might not matter in fear tactics. In 2012, the last time they evaluated 8 year olds from 2008, the rate was 1:88. So there was a 30% increase in two years of diagnoses. That is an accurate accounting of diagnoses, NOT necessarily an increase in occurrence of autism. That’s an important distinction to remember. “The report is not designed to say why more children are being diagnosed with autism, Boyle says. But she believes increased awareness in identifying and diagnosing children contributes to the higher numbers.” Obviously, it is not the only contributing factor, that diagnosis shopping I mentioned earlier is also a factor, etc. Schools giving diagnoses to children is also a factor.

I will also point out the person states that the data was collected in 2006. That means, the evaluation was done in 2008 (which report would have come out in 2009) and this post has probably been circulating since then, with folks just changing the ratio to fit the current CDC numbers. The evaluation done that year sampled 14 states. Maybe that’s where that confusion comes from?

 “My personal calculations estimate autism to be prevalent in 1:25!”

I do not know who “my” refers to. I don’t know if this person is a scientist. I do not know if this person has any knowledge of statistics and research. The claims made thus far suggest not. The fact that the source data used in this person’s calculation isn’t shared or disclosed is a huge red flag. The fact we do not know the sample size, who conducted the sampling, any affiliations this person has, their calculations cannot be trusted.

“No matter which data you use, you simply cannot deny that Autism rates are exploding. More and more families have a child (or more) with Autism. It simply cannot just be genetics!”

I’m glad this person allows us to use data that is peer-reviewed, scientifically based, controlled, double blind, etc.! Whew. Yes, rates do seem to be “exploding” at a 30% increase at present. Again, the factors contributing to that rise has already been discussed. It does not mean it’s an actual increase in occurrence of autism, just the diagnoses. So, no it’s not “just” genetics.  No one has ever claimed it was “just” genetics, either, that cause autism.

From John Hopkin’s: “However, part of the reason why no other risk factors have been identified may be that genetic and non-genetic factors need to be studied together in order to get a clear picture.  In other words, only when studying ASD cases with a certain genetic background may we be able to see that a particular non-genetic trigger was important.  Studies like this are only just now getting underway.” (March 28, 2014, online)

Maybe if they weren’t so bogged down trying to replicate the study done (and manipulated) by Andrew Wakefield, we’d be further along.

Speaking of the link between vaccines and autism, the same source as above had this to say:

There has been much recent discussion over a potential link between vaccines and ASD.  Concern has been expressed over the MMR (measles/mumps/rubella) vaccine and vaccines that contain a preservative, thimerosal (which contains a form of mercury.)   A number of epidemiologic studies of MMR vaccination and ASD have now been completed with none finding evidence of a link between MMR vaccination and ASD.

Epidemiologic data has recently become available on the potential association between thimerosal and autism.  These data do not support an association.  While it appears that there is no link between thimerosal exposure and autism risk at the population level, there may still be small groups of individuals susceptible to neurodevelopmental effects of low-dose mercury.  Research is underway exploring the possible mechanisms.

In sum, the available epidemiologic data suggest no link between childhood vaccination and autism – these data offer no reason why immunization should be avoided or postponed.

This actually confirms what I’ve said before, without any knowledge. That there ARE children who are injured by vaccines, but that there is no direct link between vaccines and autism. Vaccine injury is not autism.

 “And autism isn’t the only issue! More and more children continue to be diagnosed with cancer, learning disorders, autoimmune system disorders, neurological disorders.

When is the public going to band together against this?! Are you going to wait until it happens to you, or someone you love? If so, it won’t be long! Sad but true!”

I agree. Autism is not the only issue facing children/adults today. Adults are diagnosed with autism, cancer, learning disorders, autoimmune system disorders and neurological disorders, too.

Sad, but true. I am sure there are researchers researching all of those issues as well as autism. But this whole post uses fear. It’s a tactic one learns in marketing 101 at any college these days. If you want donations, you have to instill fear. You have to instill urgency. Why? Because why else would anyone donate to your cause?

Already this post is so long, but please bear with me!

forblogpost4JPGThis was a response to the above that she posted on her timeline. Another person (who had “No Vax” in her name) had made a comment claiming certain things and that was my reply to her. Parent of child, who posted the original one above, replied to me. “Look, I get it, you’ve come to accept your autism. Reality is not everyone has or ever will.”

I never once claimed that she did not wish well things for her child. I never once claimed that she did not want the best possible life as she can provide to him. And my having accepted by autism? So? What does that mean?

Between that and her comment on my post (the first screen shot in this blog), I believe she thinks I “suffer” from a higher form of autism than her son does. I don’t know where on the spectrum her son lies but I tell you one thing. I’m sick and freakin’ tired of people assuming they know where *I* lie on the spectrum just because I can type!

But that is for another post 😀

 

and these are my words….

 

 

 

 

 

 

 

 

 

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2 Responses to “The CDC has new numbers for autism”


  1. April 11, 2014 at 7:11 am

    The question, for me, is where are these diagnoses coming from? Mine came from a psychologist who didn’t seem to know enough how to apply what he knew about me, to me, and he wound up limiting me. But he was board-licensed (as far as I know), had a degree, and could diagnose me. But is that as useful as a diagnosis by, say, the Cody Center (Stony Brook University’s Autism organization)? Or what about one by Autism Speaks-affiliated persons (if there are any)? Further, autism -is- a mystery disease in that, while one can say you -have- it, many do not -understand- it.
    I am skeptical of many numbers any organization puts out. But, I guess it may all come down to, it takes one to know one. I know that seems odd, but maybe that’s the only way.
    Thoughts??

    • April 11, 2014 at 6:28 pm

      I think you’re right in that it is easier for us autistics to diagnose another one… the problem is, we tend to see traits in everyone, especially if we like them! We want them to be like us.. so if autistics were to be the ones making diagnoses, they should go to school to learn how to differentiate, etc. and become licensed and certified! LOL

      I don’t think it’s the only way, however. My doctor who was a neuropsychologist was able to do just fine 😀
      Some are just better at their jobs than others–no matter the field.

      As for the numbers.. they also collect the same child’s data from multiple sources.. Child A receives a diagnosis from Doctor, but CDC also counts the same child from the opthamologist office, speech therapist, physical therapist, etc. BUt they don’t collect names so the same child can be counted like, six times.


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