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Validity Of CDC Autism Rates Questioned

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Tamara Hicks plays with daughter Skylar, who has autism. An editorial in this month's issue of the journal Autism calls into question the methods the CDC uses to determine how many American children are on the spectrum. (Mark Schultz/Raleigh News & Observer/MCT)

Tamara Hicks plays with daughter Skylar, who has autism. An editorial in this month’s issue of the journal Autism calls into question the methods the CDC uses to determine how many American children are on the spectrum. (Mark Schultz/Raleigh News & Observer/MCT)

With autism numbers rising every few years, some researchers in the field are sharply questioning the reliability of the government statistics.

An editorial published this month in the journal Autism is taking the U.S. Centers for Disease Control and Prevention to task for the methods they use to assess prevalence of the developmental disorder.

The current approach is based on data collected on 8-year-olds in multiple communities across the country. Researchers review medical and education records for the children to identify any existing diagnosis of autism or symptoms that suggest a child is on the spectrum.

Since the CDC began releasing national prevalence estimates based on this surveillance method in 2007, rates of autism have jumped from 1 in 150 to 1 in 110 reported in 2009 to 1 in 88 in 2012.

The most recent figures released in March indicate that 1 in 68 American children are on the spectrum, reflecting a 30 percent rise in just two years.

“We believe that this apparent increase should raise as many concerns about the study methods themselves as it does about other reasons for the observed change in prevalence,” reads the editorial authored by two of the journal’s editors, David Mandell of the University of Pennsylvania School of Medicine, and Luc Lecavalier of Ohio State University.

Specifically, the researchers question how autism prevalence could be determined through a records review alone without assessing a single child.

What’s more, they say the wide variety of results collected from the different study sites should be a red flag. In the latest CDC data, for example, 1 in 45 kids in New Jersey were said to have the developmental disorder compared to 1 in 175 in Alabama. There were also variances by race and ethnicity across the study’s 11 sites and there were differences in the number of children found to have co-occurring intellectual disability.

“Simply put, without direct assessments of children, we will not know the extent to which the CDC-determined ‘cases’ include false positives, or the extent to which children who it was determined do not have autism are really false negatives,” wrote Mandell and Lecavalier, adding that they believe it would be a “mistake” to continue relying on the CDC figures any longer as “meaningful estimates of prevalence.”

For their part, the CDC did not respond to an interview request, but defended its current approach in a statement to Disability Scoop.

“CDC is committed to scientific integrity and a high standard of quality for the autism data that we report. There are different methods to estimate the number of children with autism, each with its strengths and limitations. CDC stands behind the (Autism and Developmental Disabilities Monitoring) Network’s autism tracking method for providing the most complete picture of autism in communities across the United States,” the statement said.

Furthermore, a CDC spokeswoman pointed to a 2011 study published in the Journal of Autism and Developmental Disorders that the agency said backs its current surveillance methods, finding that the autism rate reported is likely a conservative estimate.

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Comments (22 Responses)

  1. Heather says:

    well that makes sense. Instead of acknowledging an epidemic, let’s just question the numbers! That way we don’t have to look into WHY the rate is different in different states and find out that there may be environmental factors at play. Cuts into our “it’s not that big a deal and it’s just genetic” philosophy! At this rate, by 2025, if the IACC continues to nap during their meetings, prepare for one in every two children to be diagnosed. But hey—- it’s not an epidemic!

  2. Jodi says:

    I know many, many children with language disorders who were falsely labeled with autism by school districts. So all these children would fall in the 1 in 68 number — even though developmental pediatricians and other experts have ruled out autism in their cases. I’m glad that there’s some actual scrutiny of the numbers now. It’s about time!

  3. Autism parent says:

    The people questioning the autism numbers are either in denial or trying to cover up what amounts to one of the biggest medical disasters of all time. Instead of facing the truth that autism is truely skyrocketing they question the validity of CDC data or change the definition of autism as if that will lower the numbers. The only reason they questioning CDC is because they haven’t been able to explain the rising autism numbers which the public is now questioning.

  4. Whitney says:

    Human narcissism is more at play and greed. I would question the numbers to make sure diagnoses is correct. I don’t see how the environment factor cause the mutation in genetic of both DNA structure of the parents is really affected. Americans had been reckless in the pursuit of the all mighty dollar to see what they been doing to children it is no different lead paints. Here in Texas toxic chemicals can be stored without the community knowledge courtesy of the Koch brothers. It is not their families children that might have autism or cancer. They also are not paying for any of the treatments either. This is what the study implies to get society “we don’t have to pay for it card” by ignoring the problems at hand.

  5. Dan says:

    Not to worry. . . I believe the higher likelihood with government numbers is that they always lean to the conservative side for numbers when they make their reports. . . .

  6. Marlene says:

    I’m seeing ‘Autism’ used as a catch-all DX lately by professionals. It may be that it is the result of the availability of earlier, more intensive services for autism that have become available to those having the dx. I’m also seeing that after a few years the dx is either removed, or the child is re-catorgorized. That leads me to question the dx in the first place since if a child has autism, it doesn’t disappear in a few years. The question is whether the DX was made more as a precautionary measure, or if it was a true dx of autism in the first place?

  7. Jim says:

    I think we have looked at a lot of paper and come up with some startling statistics. I believe what is now being said is ‘let’s look at the kids and see if we can find out why the variance from state to state, culture to culture and from race to race’. Discovering the reason why may give us clues to how we can address this epidemic.

  8. Joe says:

    An epidemic can be acknowledged while questioning the numbers. From my experience in schools working as a mental health professional, there are many many children misdiagnosed by physicians without conducting any direct assessment. It’s a shame because it takes away from the availability of the limited number of trained individuals who could be providing therapy to the children correctly diagnosed. There can be good that comes out of acknowledging that children are being misdiagnosed at an alarming rate.

  9. geeegee says:

    questioning a tiny percentage discrepancy is a lot easier than facing the tsunami of developmentally problems our kids are being born with…..a few decades ago when my son who has autism was born, it was one in 35,000. it problem is environmental. but our lobbyists at monsanto and in the white house cabinet can’t talk about such things….they would rather nitpick to distract. other more sane countries like sweden and norway banned dyes and gmo and pesticides long ago. we are poisoning and fouling our nest because our politicians and lawmakers are bought…right up to the top.

  10. Paul Strand says:

    In my opinion the rush to diagnose so many people with autism has something to do with special ed funding at school. The joke around here is you either have ADD or Autism. Add a couple more diagnosis and the only one left free of a disabling condition is the school psychologist.

  11. Tacitus says:

    How unsurprising that the paranoiacs are wetting themselves over this. Evidence that supports the conspiracy theory is inherently unimpeachable, while evidence calling it into question just shows how deep the conspiracy goes!

    An estimate on prevalence that *does not include examination of a single alleged patient* is preliminary at best, no two ways about it, but since the numbers it gives you support the conspiracy theory, naturally anyone calling it into question is either in denial or in on the conspiracy themselves!

    And ask yourselves, just how big does this conspiracy have to be? How many doctors who have never seen each other’s faces have to be in on it for it to succeed? How many researchers have to be lying about their results? But the idea that bean-counters in a government bureaucracy could possibly be incompetent–goodness no! Where could the far reaching power of the conspiracy come from then?

  12. Autism parent says:

    Did anyone even bother to look at how the CDC obtained their numbers as in methodology? It’s online. “Prevalence of Autism Spectrum Disorder among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, March 28, 2014″‘ period covered 2010

  13. Autism parent says:

    Tacitus it’s easy to sit back and defend these men who question the CDC numbers and call their critics “conspiracy theorist”. Perhaps you need to get out in the field and talk to the families affected by autism. We are not hard to find at 1 in 68. Fact is many have denied the increase is real attributing it to changes in criteria or so called better diagnosing. If the autism increase is due to massive screwup resulting in serious injury of millions of kids you better believe the powers at be would be reluctant to acknowledge a true increase. The legal cost would be staggering. Better to deny, deny, deny.

  14. beth says:

    As a parent of a child on the spectrum, and seeing firsthand how varied the diagnostic process looks among mental health practitioners, I think it is fair to say that the data is probably skewed in some direction. My husband works in the field and says we all have “a touch of the ’tism” and as a school nurse I tend to agree. If the reports raise awareness of the complicated factors involved in diagnosis and treatment, I fully support the dialogue that involves questioning the validity. I would hope the dialogue would result in more funding for research and treatment and less finger-pointing at vaccines or gluten or the latest “culprit”.

  15. autism parent says:

    I don’t see anything wrong with CDC’s methodology or even why its being questioned. The process of data collecting was done in two phases. In Phase 1, they screened and collected evaluations from professionals at pediatric health clinics and specialized programs who did extensive, comprehensive evaluations on children dx autism. In Phase 2, they went back an validated the data in these comprehensive evaluations again using trained clinicians and counted those evaluation results that met criteria in the DSM. You can go online and see how the CDC obtained the data. “CDC, Prevalence of Autism Spectrum Disorder Among Children Aged 8 years”

  16. S. W. H. says:

    I am so glad that someone has finally raised this question and challenged the validity of this information reporting this huge increase in autism diagnoses! I am a school psychologist (for more than 30′years) and have seen far too many medical and psychological reports from doctors and licensed psychologists, etc., diagnosing children with autism, with NO evaluation instruments/tests administered and no comprehensive assessment completed! There are numerous assessment instruments available, and it is irresponsible and inexcusable for practictioners/professionals to diagnosis children with autism without using appropriate standardized evaluation procedures that provide reliable, valid, and sufficient evidence that a child has autism. I hope this issue is taken seriously and new standards for evaluations are required by practitioners who may irresponsibly (and often wrongly) diagnose children with autism. There are often long-term adverse consequences associated with misdiagnosis of such serious disorders! This must not be taken lightly. All disciplines affecting children by diagnosing disorders must take heed and not lose sight of their purpose–the well-being of the child (not wrongly diagnosing children with serious disorders to simply meet the needs of parents and/or obtain entitlement services for children that aren’t warranted or necessary! )

  17. Nadine Anderson says:

    Of course there is a great discrepancy among the states. Parents find out where the best programs are and move there. I work in the NJ schools. We have a student who was told by physicians to move to NJ as there would be better programs there. Were they most interested in keeping their school taxes low or in seeking the best for the student?

  18. Judi says:

    My daughter was diagnosed in middle school. If you just looked at the records of kids who are 8, she (and many others like her) wouldn’t be included in the statistics. Aspergers was ruled out when she was 7 by her primary care pediatrician who did no tests but ruled it out based on the fact that she had more than one preferred topic that she could talk incessantly about. We had noticed symptoms from as young as age 1 and were told she was typical. I think it’s missed in kids who aren’t disruptive in school.

    An earlier diagnosis would have gotten her therapy before her bad habits had more time to become ingrained. I agree that we all have a bit of autism but in her case it’s been preventing her from having an independent life.

  19. Autsmismedical says:

    Ok, what’s with people always saying that schools are over diagnosing things? Since when do school districts diagnose anything?! Pretty sure only doctors get to do that…

  20. Casey Best says:

    Let’s face it – in the scientific world the publications mentioned here as been the source of the questions are not up the better end of town. Politics – and very close examination of who said what, why and based on what. In science many like to debase others purely because that is what is done in the scientific community. (Disclosure – I have autism and Asperger’s). As far as I can tell from accessing the journals and articles I am able to there is NOT a body of evidence to debase another major organizations work. This is merely opinion. (Anyone who wants to Facebook me is welcome to do so on this topic – most interested in further information)

  21. Nicci says:

    You know, the government has a great track record of being 100% honest and competent in everything it does. They always have our best interest at heart. >eyeroll<

  22. Karen says:

    The new and recent criteria for diagnosing autism was actually meant to decrease the prevalence of the diagnosis of autism. Special Education has been terribly under funded since it was mandated by the federal government in 1976. It is now down to 25% state and federal funding and that goes mainly to administrative cost for the special education departments in school districts. Hinse, the rise and sell of “Inclusion” and “mainstreaming” services to struggling student. Reg. Ed teachers have been turned into SpEd teachers without enough appropriate training to deal with special needs students. It’s a cost saving measure. The Federal government never considered the rise of autism when special education was mandated. Originally funded at 60% percent fed and 40% state for one .06% of the student population. The special education population has exploded to 16% with 504 ( unfunded less severe disorders, such as ADHD and dyslexia) bring that number up to 24%. A lot is the rise in Autism, severe ADHD (related disorder) since the hearing impaired, blind, and down syndrome rates have remained constant in the percentages and numbers. numbers.

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