Sunday, April 3, 2016

Autism by Numbers: The Latest CDC Report

“People say believe half of what you see, Son, and none of what you hear, but I can’t help but be confused. If it’s true, please tell me, Dear.” ––Marvin Gaye, “I Heard It Through the Grapevine”

Just in time for April first and the beginning of Autism Awareness Month, the U.S. Centers for Disease Control and Prevention (CDC) released a new report this week regarding the prevalence of autism. [To read this report, please click here. To read a summary of this research, please click here.] This report, which has been updated every two years since 2000, has indicated a startling increase in the rate of autism from 1 in 150 children in 2000 to 1 in 68 children in 2010. However, their newest data from 2012 indicates that the rate has stayed relatively stable, and they cite the current rate of autism as 1 in 68.

Of course, the media has run with this statistic, proclaiming that autism rates have reached a plateau and are no longer increasing. With headlines such as, “Latest CDC Figures Show Autism Rates Holding Steady,” “US Autism Rate Unchanged at 1 in 68 Kids: CDC,” and “Autism rate among US children held steady 2010-2012: CDC,” one would think that something miraculous has occurred to stop the rising tide of autism. However, we need not be jumping for joy or jumping to any conclusions just yet.

First, one must consider the samples used for the study. This ongoing research only includes eight-year-old children. The newest report released a few days ago is four years old, with the “surveillance year” being 2012, and only considers children born in the year 2004. Consequently, no children who are currently under the age of twelve have been included in this data.

In addition, this data was only collected from eleven select sites around the country, the so-called CDC Autism and Developmental Disabilities Monitoring (ADDM) Network. These children lived in select communities in eleven states: Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin in 2012. Do these communities accurately represent trends in autism throughout the United States? Including specific communities in only eleven states seems to be a rather small sampling for a rather important issue.

Even the researchers admit potential problems with the data, noting, “The findings in this report are subject to at least seven limitations.” Among these cited limitations are problems with “source records” used to identify children with autism, such as health care records and education records. These records provided the only data, and the amount and quality of data varied, especially from state to state. For example, some states did not provide educational data, which “might have led to an underestimate of ASD [autism spectrum disorder] prevalence in those sites.” Moreover, education records were usually not available for children who were enrolled in private schools or who were home schooled. If the data were limited, perhaps the conclusions of the study lack reliability.

Other limitations of the study, the researchers admit, include the lack of population data available during non-census years, which necessitated estimating population figures. However, the most startling admission the researchers make lies in the selection of the ADDM Network sites. As the fourth limitation listed, they state, “the surveillance areas were selected through a competitive process and were not selected to be representative of children aged 8 years in the United States or the state where the surveillance site was located.” If these ADDM sites are not representative, what is the point of doing the survey at all? Clearly, these methods seem to lack the needed controls for research accuracy and take away reliability from the study.

Undaunted by questions in the methodology of this study, the CDC has released “Five Important Facts to Know” regarding the “statistics” released this week. [To read this document, please click here.] Essentially, they state that children are not being diagnosed with autism early enough, minority children with autism are not being diagnosed early enough, and schools are important in evaluating children with autism and providing services for them. This poses a problem, however, since children typically start school at age five, meaning that many preschoolers with autism are not getting the valuable early intervention they need. Perhaps pediatricians and primary care physicians need to do a better job at helping parents whose infants and toddlers present symptoms of autism.

In addition, the CDC notes that the percentage of children with autism remains high and states that the new report “shows no change between 2010 and 2012 in the percentage of children identified with ASD.” However, they also note, “It is too soon to tell if the percentage of children identified with ASD is still increasing or has stabilized.” They provide two reasons why people should not jump to any conclusions about autism rates. Specifically, they note that although the average percentage in the eleven sites combined remained the same, two communities reported significant increases in the percentage of children with ASD between 2010 and 2012. Also, they state that the percentage of children identified with ASD varied “widely by community” with the lowest percentage in parts of South Carolina and the highest in parts of New Jersey. Again, one wonders how reliable the data is when the sampling areas were admittedly “not selected to be representative.”

After reading through the CDC research and reports, I found myself totally frustrated, wondering how much time and money has been wasted on worthless studies of autism. As an autism mom for more than two dozen years, I would like to share my own “Five Important Facts to Know” about autism.

1. The CDC has no idea how many kids actually have autism because their research methods lack reliability.

2. The CDC recommends early diagnosis of autism and early intervention but doesn’t understand the difficulty of getting services once those kids have an autism diagnosis. Parents know that when services are available, they are costly. Often, providers have long waiting lists, and children can’t immediately get the help they need.

3. The CDC has no clue (or will not admit) what the actual cause of autism is, nor do they know (or will they admit) what has caused the significant rise in the percentage of children diagnosed with autism.

4. The CDC doesn’t seem to be working on finding out what really causes autism, a medical condition they should be investigating. Our society cannot provide the services and resources needed for all those who have autism as well as those who will be diagnosed with autism in the future.

5. Instead of the CDC, autism parents, whose deep love for their children and tremendous tenacity motivates them to keep looking for the answers, will solve the autism puzzle. Count on it. Now, all we do is wait on the Lord to answer our prayers.

“I will answer them before they even call to Me. While they are still talking about their needs, I will go ahead and answer their prayers!” Isaiah 65:24

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