HAVE QUESTIONS ABOUT THE NEW INFORMATION RELEASED BY THE CDC?

Have questions about the new information released by the CDC? 

I have some answers! (I hope)

1) Where did the data come from?

The CDC gathers data from counties in 11 states. The data is only about children who are 8 years old. There is good reason for picking 8 but, it does miss some children who are diagnosed at an older age.

2) How old are those children now?

In 2012 the rates were 1 in 88 and those children were 8 years old in 2008 so they were born in 2000. The new rates of 1 in 68 are from data gathered in 2010 so those children were born in 2002 and are turning 12 years old this year. It is important to understand this because every 2 years the rate increases and that data is about children who were born 12 years prior to the release of that data.

3) Wait a minute, didn’t the CDC release a 1 in 50 number just last year?

Yes, in fact they did. Here is the difference. Every 2 years the data collected by the CDC from 11 states is only about 8 years olds. The data comes from offices that are trained and funded to collect it. Last years results came from a phone survey that asked about children all the way up to 17 years old. The explanation for that drastic increase was the many children that had fallen through the cracks and were getting diagnosed in their early teens. The results were interesting because the CDC did learn about older children getting a diagnosis but, that is about all I got out of it.

4) Isn’t the increase in the rates of autism just a result of better diagnostics?

Not necessarily. When the the increase from 1 in 110 to 1 in 88 came out in 2012 that was one of the first assumptions thrown around. According the reports I heard at the time, it was not the case. Of course, some the the children diagnosed were children who would have previously been missed in earlier generations so that will account for some of it. It was not considered significant enough to relieve concern that increasing numbers were part of an upward trend in children with autism (not just children diagnosed with autism).

5) What is causing the increase?

That is the million dollar question. I guarantee you that if you could answer it you would probably get at least a million dollars in grant money and possibly the Nobel Prize. Improvement in diagnosis certainly accounts for some. Genetics? Let me give you some helpful information about genetics (which I did actually take in college) and autism. It has been a couple years since I read the reports but, they had found some genes that could cause autism. Problem was, they only accounted for 1%­2% of people with autism. The increase cannot be purely genetic in my opinion. Why? If autism was a virus or disease, it would be considered an epidemic at these rates. But, unlike a virus that spreads from person to person, you cannot catch autism. There isn’t any such thing as a genetic epidemic. It would be like the numbers of people born with cystic fibrosis increasing in prevalence by double digit percentages every 2 years. It doesn’t happen. I am not saying that genetics are not involved. Understanding the genetics involved in autism is important. Our family is likely part of that 1-2%. I believe, as many do, it is more likely is that there is an environmental trigger and/or people who, with a genetic susceptibility are exposed to an environmental trigger or multiple triggers that end up with an autism diagnosis.

6) Do you think the numbers are an accurate representation of the actual numbers of children
    with autism?

Yes and no. It is probably as good as we can get right now. Remember, this is a cross section of 11 states.  What I do know is that boys are 4.5 times more likely to have an autism diagnosis than girls. While it was previously thought that it was only because boys are more likely to have autism, there is a possibility that girls with high functioning autism are less like to get a diagnosis. The rates in New Jersey are at least 3 times higher than in Alabama and this is not likely because autism is less prevalent but, because there is less access to services and testing. The rates of children in minority communities are much lower as well. While there is a chance that these differences are caused by a particular race being less likely to have autism, it is more likely that there is a lack of access to services and testing. Basically, the reported rates could be a little low.

7) Should I freak out?

In general, I am not in favor of freaking out. I tend to think the better route is to investigate and face reality. Is there reason for alarm?  I guess you could say that because there is just not enough access to support but, autism is already part of our families life and we can’t cover our eyes and ears and pretend our son doesn't have struggles related to his autism. Alarm isn’t going to change anything for us but, a sense of urgency could change outcomes for another family.

Disclaimer: Some of the information contained here is floating around the internet; I’m not going to try to notate it. Any of that type of information is on almost all the news sites as well as the CDC website. I am not a statistician, though I did take a statistics in college. I am not a scientist nor a medical professional, though having a child with autism has increased my ability to read medical studies. I can wade through medical speak pretty easily. Ok, and some of this is opinion from myself or others I know but, I am not trying to mislead you. This isn’t meant to be exhaustive, just give you a little bit of insight into the data.