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Jefferson23

(30,099 posts)
Tue Jul 8, 2014, 03:07 PM Jul 2014

Validity Of CDC Autism Rates Questioned

By Michelle Diament

July 7, 2014

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.

http://www.disabilityscoop.com/2014/07/07/validity-cdc-autism-rates/19485/

7 replies = new reply since forum marked as read
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blueridge3210

(1,401 posts)
1. Let's see...
Tue Jul 8, 2014, 03:18 PM
Jul 2014

Expand the spectrum, devote more resources to treat autism than other learning disorders........nope, no reason to think that the number of those diagnosed with Autism would ever increase. The disorder clearly exists; but until a standard diagnosis is followed for several years without modification an increase alone means nothing.

proverbialwisdom

(4,959 posts)
2. Check it out.
Tue Jul 8, 2014, 04:46 PM
Jul 2014
http://pic.twitter.com/yiHBv7yDCa

"...the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected."
- Dr. Thomas Insel, Director of National Institute of Mental Health and head of Interagency Autism Coordinating Committee (IACC)

10:02 AM - 27 Mar 2014


http://www.northjersey.com/news/report-new-jersey-s-autism-rate-is-the-highest-in-the-u-s-1.752693#sthash.XyuaB0ms.dpuf

“The increase could be a growing number of children with autism or better screening or a combination of both,” said Dr. Coleen Boyle, the CDC’s director of the national center of birth defects and developmental disabilities.

Related: http://www.democraticunderground.com/1014766480

[img][/img]

Igel

(35,320 posts)
4. Insel's wrong.
Tue Jul 8, 2014, 08:51 PM
Jul 2014

The burden of proof is on the people making the claim. If they can't show that their data are valid and have sufficient integrity it's not up to somebody else to try to poke holes in it. That's the kind of attitude that just gets your data ignored.

In fact, a lot of research that's published or presented gets demolished not because the audience comes up with better data, but because they ask questions about the data's integrity and provenance that the researchers can't answer.

"Look here. I polled my Cousin Susie and she says autism rates have declined. It's up to Dr. Insel to examine her data and find her mistake. Until then, the world is obligated to kowtow to Susie's 'data' that she collected by rolling a die. Let Dr. Insel show that the data must be false--not just 'there's no way to trust that it's valid'. No. He has to show every datum is wrong."

If it nicely reduces to an absurdity, it's because it starts off as an unreduced absurdity.

proverbialwisdom

(4,959 posts)
7. You're missing the point, Insel's view was the same yours UNTIL he became convinced at which time -
Tue Jul 8, 2014, 10:58 PM
Jul 2014

- he made the statement above. NO ONE was more skeptical, according to the IACC critics I've read, so it was quite the concession when he stated at the 1/14/14 IACC meeting that given the severity of the diagnoses, the 'rubber ruler' was a false explanation for the prevalence data spike.

Link to video: http://www.democraticunderground.com/?com=view_post&forum=1059&pid=2522

proverbialwisdom

(4,959 posts)
3. NJ rate doubles: "80 to 85 percent of the children in the study had the most severe form of autism."
Tue Jul 8, 2014, 04:51 PM
Jul 2014
http://www.northjersey.com/news/n-j-autism-rate-soared-in-4-years-1.491264

N.J. autism rate soared in 4 years
Source: By Lindy Washburn, The Record, December 18, 2012


New Jersey's autism rate nearly doubled in four years, according to new research published Monday that expands upon previous national studies.

<>

"This is a call to action for the state and providers of all disciplines to endorse and utilize evidence-based practices" to give individuals with autism and their families the best odds for an improved quality of life, said Suzanne Buchanan, interim executive director of Autism New Jersey, a non-profit organization.

She found it remarkable that 80 to 85 percent of the children in the study had the most severe form of autism. "While the vast majority of individuals on the spectrum need support services, individuals on the severe end need them even more so," Buchanan said.

<>

Reposted from here: http://www.democraticunderground.com/1014343097

Igel

(35,320 posts)
5. I find it exceptional that 80-85% of the children in the study had the most severe type.
Tue Jul 8, 2014, 08:57 PM
Jul 2014

Really exceptional.

As in I doubt that it was a random sample.

That's the problem with people who conduct motivated research. They're as much advocates as disinterested researchers. Their interest in having their hypothesis validated or in turning up new, stunning results is not just about getting tenure or advancing knowledge, getting bigger grants, nicer officers and a better quality of grad student, or even filing for patents and raking in royalties that allow early retirement. It's about saving people's lives, it's social work, it's about being the guys in white hats riding to the rescue of the poor innocents in need of what only the white-hats can provide.

It's personal, it's moral. And when you start fighting for reasons personal and moral all kinds of bad things happen. Ends >> means.

proverbialwisdom

(4,959 posts)
6. That's fine, confirm it. Skepticism is great as long as it doesn't end there, agreed?
Tue Jul 8, 2014, 10:48 PM
Jul 2014

Please see minute 1:45 of this 2012 interview with Dr. Walter Zahorodny of UMDNJ (University of Medicine and Dentistry of New Jersey) where he addresses the question of severity. Isn't there an obligation to critically evaluate the actual research before dismissing it?

AND IF HIS GROUP'S WORK IS CAREFUL, ACCURATE AND CORRECT?



Published on Apr 2, 2012

A new study has found that rates of autism have increased among children. Autism Study Investigator Walter Zahorodny, of UMDNJ, called it "a health crisis" because of the number of children and families affected. He sat down with NJ Today Managing Editor Mike Schneider to discuss and explain the new findings.

http://medicalxpress.com/news/2013-03-state-highest-autism-range.html

State with one of highest rates of autism turns out to be in normal range

March 26, 2013
by Mary Jo Layton in Autism spectrum disorders


When New Jersey reported one of the nation's highest rates of autism last year - doubling in six years to one in 49 children - researchers described it as "beyond an emergency." But a federal study released this past week indicated that the high rate appears to be the norm nationally. Autism spectrum disorder now affects one in every 50 children, well above the one in 88 previously reported by the Centers for Disease Control and Prevention.

"The good news is that the increase in autism isn't special to New Jersey," said Walter Zahorodny, an autism researcher at the University of Medicine and Dentistry of New Jersey. "The bad news is that it's a significant increase and it's registering everywhere."

The findings released this past week by the U.S. Health Resources and Services Administration and the CDC are spurring debate: While experts attribute the increase to better reporting, it also suggests that the disorder is being diagnosed more frequently in children with milder symptoms.

According to the study, 1 million children nationally are diagnosed with autism, a complex disorder that affects brain development and a person's ability to communicate, learn and form relationships.

"The feeling all along wasn't that New Jersey has more cases of autism - New Jersey was just more rigorous in ascertaining the incidence," said Dr. Joseph Holahan, medical director of the child development center at St. Joseph's Children's Hospital in Paterson. "It's still one of the most common serious developmental disorders we see."

<>

"We still think one in 50 is an underestimate," said Michael Rosanoff, associate director for public health research and scientific review for the advocacy group Autism Speaks.

The real issue is we need to meet the demands of this public health crisis," said Rosanoff said. "This should be a wake-up call."

<>

http://www.njjewishnews.com/article/18974/timely-help-for-those-on-autism-spectrum#.UnO03akTub8

Timely help for those on autism spectrum

by Sara Mendez
October 30, 2013


Autism spectrum disorders are a set of complex developmental disorders associated with the well-known challenges of social and communication difficulties.

Jewish Family Service of MetroWest’s entry into this arena, with its trained clinicians, is timely. According to a study released by the Centers for Disease Control and Prevention in 2012, one in 49 children in New Jersey has an ASD, a rate of double the number of cases over the prior study in 2007." New Jersey records the second most prevalent rate among 14 states tested nationwide.

According to the study, 80 percent of these cases have been diagnosed as “severe.” The average age of diagnosis in New Jersey is just over three years. As a result of this troubling growth in diagnoses, multiple interventions and approaches to working with children diagnosed with ASD have been developed. Each child with ASD is unique, so intervention plans can be tailored to address such individual needs.

<>

COMMENTS:

Paul G. King
October 31, 2013

Regarding the NJ 1 in 49 rate, given the sex ratio (Male to female) reported, it is obvious that those children with lesser levels of damage are being disproprotionately missed.

Hopefully, because NJ is one of the states with 2 “independent” sources of diagnosed individuals with some overlap between the sets, the NJ public health officials can be encouraged to perform the appropriate statistical adjustment for underascertainment and correct the 1 in 49 number for that under counting.

Were this to be done, it i likely that the underascertainment-corrected rate for children with an ASD diagnosis in NJ would probably be closer to 1 in 25 than it is to the reported raw records’ level of 1 in 49.


NJ, Oregon... here's a striking and lucid comment you will read once and never forget.

http://tacanowblog.com/2014/01/27/so-autism-is-even-more-common-than-last-year-who-cares/#comment-3888

RECOMMENDED COMMENT:

Kendra
January 28, 2014 3:10 pm

George,

Let us look at my state alone. 25 years agao there were SIX children in Oregon known to have Autism and receiving services, special education, therapies. Now, let’s say there was a sudden recognition that autism might be an under-diagnosed – under-recognized disorder that might be affecting some of our children that we were labeling as something else. They often refer to this as “diagnostic substitution”. I would expect that number of SIX children to go up some, let’s say a few percentage points. How about to 50 kids in Oregon with Autism. I still would find that jump alarming, wouldn’t you. And let’s say this newfound awareness swept in some kids with NO previous diagnosis before….”increased awareness”, I would gladly and generously give you another 50 children, though again alarming, so now we would have 100 kids in the state of Oregon, diagnosed with Autism and receiving services.

Now i have to admit that even this gives me pause as i personally do not believe that 25 years ago, 50 years ago that parents, teachers, daycare providers, sunday school teachers simply didn’t notice or recognized the distinct aspects of autism and report that they had children that didn’t simply have retardation or other obvious developmental delays but children who toe-walked, flapped their hands, screeched, smeared feces, couldn’t talk, couldn’t sit still in class, had to have one-on-one educational paras shadow them throughout their day, were prone to elopement, self-injury, lashing out at others, were not just socially awkward but seemed to find it painful to interact with other children and/or adults. I just can’t seem to wrap my brain around the idea that these things would have been missed and that schools should not be going broke and screaming about the costs of these record numbers of children if we simply called them something else, because no matter what we called them, the schools would still have had to deal with them, spend on them, etc. No these number are new and costing billions of dollars, so it simply cannot be diagnostic substituion. Plus the numbers of all other disabilities have held steady in my state based on population percentages.

So, the question is George, what is the number today vs. the SIX children known over 20 years ago. Taking into account the possible 100 I have given you as possible if it is simply better diagnosis, recognition, or diagnostic substitution. Well it is over 8,000, yes approaching 9,000….over EIGHT THOUSAND children in Oregon now diagnosed with Autism and receiving services, special education, therapies, etc. Over 8,000 children who will not likely go to college, join the military, get a job, get married, get a driver’s license, who will need care or supervision for the rest of their lives. Over 8,000 children in one small state alone, that didn’t exist a little over 20 years ago, but do now, who will cost us even more billions to house, feed, assist, care for…well, for a lifetime. These are not simply socially awkward people with quirks, those we used to call geeks. These are children with a profound and devastating developmental disorder, not easily overlooked or missed.

I hope you will rethink your theory!
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