Minnesota Has the Highest Autism Rate?: Depends on How You Count It
August 20, 2008 by Kristina Chew, PhD
Filed under California, Cause, Education, Environment, Epidemic, New Jersey, Vaccines
Darn, I thought it was my own state of New Jersey that does: According to the most recent figures released by the Centers for Disease Control and Prevention in 2007, about 1 in 150 8-year-old children in multiple areas of the United States had an ASD, and New Jersey has the highest prevalence rate, 1 in 94. An article in the August 20th CityPages in Minnesota suggests that it’s rather the North Star state that has the highest rate, 1 in 81.
The CityPages article mentions a 2001 CDC study but not the more recent one in 2007, though it does cite the 1 in 150 figure. For the 1 in 81 figure, the article relies on a chart made up from data from public school districts around the country. (You can see the chart here via a parent’s website.) The parent of an autistic child, Dan Hollenbeck, arrived at this figure by finding the number of cases of autism services provided by each state’s public schools and then dividing this by the number of children enrolled. The figures that Hollenbeck arrived at provide an idea of how many children who are classified under the code of autism are receiving services in school districts across the US. But, it should be noted that school districts around the country vary in how they classify children as needing to receive services for autism, and services and programs for autistic children in public school vary widely from state to state (and within states—that’s certainly the case here in New Jersey–between rich and poor school districts, for instance). More than a few children classified under the autism code wouldn’t be diagnosed with autism if a full diagnostic assessment was done.
Further, Hollenbeck is the Director of Technology at Thoughtful House, an Austin-based center which is “fighting for the recovery of children with developmental disorders through the unique combination of medical care, education, and research.” Dr. Andrew Wakefield (the figure at the center of the MMR-autism controversy) is on the research staff of Thoughtful House, which says that we are “in the midst of an epidemic of developmental disorders that includes autism, Asperger’s Syndrome, attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), pervasive development disorder (PDD), and nonverbal learning disorder (NLD). And, Hollenbeck and his wife, Laura Hewiston (the researcher behind a certain infamous poster presentation on monkeys and vaccines) are listed as litigants (see #437) in the Autism Omnibus proceedings in which some 4800 families are claiming that vaccines injured their children and causes them to become autistic.
In other words, there is some motivation for Hollenbeck to offer data that suggest that the rates of autism have risen “epidemically,” and especially due to vaccines or something in vaccines. (And, CityPages needs to make a few clarifications about the data that it is using.)
The 1 in 81 figure suggests that educators in Minnesota are very aware about autism and about providing services for children. And that’s certainly also the case in New Jersey which, according to Hollenbeck’s figures, has 1 in 115 children with autism, which is rather counter to the CDC’s 2007 figures, and rather counter to what the “Jerseyan in the street” would tell you about autism here. Down here at the shore on Tuesday morning, my son Charlie got over-stimulated in a bakery—chock full of vacationers and display cases—-and someone who is probably the owner appeared from the back; he has an autistic grandson. (We’d always noted a collection jar for autism events on the counter.) Last week, there was a young autistic man in the waves with his father every day, and this week there’s a boy a bit older than Charlie. And there’s Charlie himself; when we tell the lifeguards about why it’s so hard for him to understand about “swimming flag to flag,” saying “autism” is pretty much all that needs to be said. Back home, there’s our school district which has a quite high rate of autistic students compared to the overall total of students—-because it’s a district with a very strong autism program and also special education services, and many families (like us) have moved to it for that reason.
No discussion of autism rates among students (and no discussion of the so-called “autism epidemic“) is complete without keeping in mind Washington University Paul Shattuck’s 2006 article on The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” in which he found that, as the rates of the autism diagnosis increased from 1994 to 2003, the rates of diagnoses of mental retardation and learning disabilities decreased. George Washington University anthropologist Roy Richard Grinker’s 2007 book Unstrange Minds: Remapping the World of Autism further explains how historical and cultural factors have led many to feel and even to believe that there is an epidemic of autism, in no small part due to our better understanding of autism, broadened and refined diagnostic criteria, and a huge increase in public awareness. There’s more and more research going on about the causes of autism: The August 19th KQED has a report on northern California researchers who are studying the causes, especially environmental ones , of autism. A blog details a video report, which can be seen here. Researchers are studying seemingly everything from dirty diapers to carpet dust in an effort to find if there are any “risk factors” that an expecting mother might encounter, that might be linked to her having an autistic child.
Having gone from Minnesota back to Jersey by way of California in this post, I have to note that we’ve connections to all three of these states. Charlie was diagnosed in Minnesota, has receive most of his school education in New Jersey (Jim’s native state), and I’m California born and bred, and there’s no question that, in all of those states (and in Missouri, where Charlie was born), we’ve encountered many autistic children. But then the chicken or egg question arises: Is the increase in autism is due to something specific that can be pointed to, something external and in the environment; or is it because of our being able to better detect and diagnose autism, significant changes in the diagnostic criteria for autism, the steady rise in public awareness about autism, and the increase in services, schools, therapies for autism (and college students)?
We’ve got the technology to measure Michael Phelps winning his seventh gold medal by .001 of a second—surely we’re better able to count cases of autism?
Jeff Stimpson
Jill Cornfield
I have to agree with Mr. Kasemodel the on the epidemic thing. But he CDC are not say there is becuase of the way that count the sutism disorder.If you take each of the symptoms one at atime then there is no epidemic.That is ADD-ADHD-PAD -ASPERGER. That is what I got when I read the statement from the CDC[Punyko and Leonard] but that is there job to under state the facts. I have that chart and what got me was that how that some of the high states got that high because of there big cities[Ms-La] up in 400s.
Di I hear Michael Phelps has ADD???
Also, although some classified with Autism may not clinically have all the symptoms, there are others that in addition to Autism have other disorders like Asperger, Tourette, DeGeorge, ADHD, Spina Bifida, Downs, CP , etc. and are classified as Multiply Disabled. So it all balances out in the end :o)
Hollenbeck ought to know better, waaaay better…and somehow, I think he does.
Here’s Michael Phelps’ mom on raising an ADHD superstar.
Hollenbeck:
“… “It was a simple calculation made with simple division. I took the number of cases of autism service provided by state public schools and divided it by the number of children enrolled,” he says. “People call it a study. But it’s not really a study. Anybody can do it, but what concerns me about it is that autism is affecting a far greater amount of kids than the CDC reports.”… ”
Why these numbers may be a measure of services delivered, but not accurate estimate of prevalence of autism. In particular, see the comments in this paper about Minnesota (and Oregon).
Laidler, J. R. (2005). US Department of Education data on “Autism” are not reliable for tracking autism prevalence. Pediatrics, 116, e120-124.
At one time 70% of those diagnosed with an ASD had I.Q. scores below 70. In other words they were low functioning. Now 70% of those diagnosed with an ASD have I.Q. scores of 70 or greater. In other words not low-functioning. Doubtless children previously classified as mentally retarded are now given an ASD diagnosis, but for the complete reversal to occur the great increase in those diagnosed has to be with those who are higher functioning.
OK. And it is entirely possible that their previous “high” functioning eluded diagnosis before revisions in the diagnostic criteria. In fact, the higher frequency among this group might bear that out. God knows that was my problem as a child.
It occurs to me that we have here a couple of “scientists” (or three) who do things when they ought to…and probably do…know better. Blood draws at birthday parties? Trumpeting meeting abstracts from research based on contrived hypotheses and implying that they’re worth something? Running a “simple” calculation and averring that the results counter the much-less-simple calculations of the CDC? People oughta know better.
OT: Michael Phelps/Debbie Phelps
ADHD Moms facebook community
Debbie Phelps is one of the Leaders and has an article on the homepage.
Mayfly: it’s a little more complex than that: as noted here, there’s actually very little support for the notion that most autistics ever had IQs under 70; it turned out to be an “echo chamber statistic” in which secondary sources would cite other secondary sources and the few primary sources were based on the administraton of IQ tests in a manner that their developers warned was invalid. So there may have been a self-fulfilling prophecy effect; if diagnosticians believe that most autistics have low IQ, they’re going to be biased against diagnosing someone with normal/high IQ as autistic and will come up with something else.
At one point the commonly-used diagnostic criteria for autism were so restrictive that many of the kids in Kanner’s original paper wouldn’t have qualified.
Let’s also not forget the difference between a special education service category and a diagnosis. While it’s possible for a person to have multiple diagnoses (”comorbidities”), the special education rules require that a child be assigned to one and only one service category. That means that the choice of category is going to be based on which one “fits best” (even if none of them fit all that well) and on what sort of services the child could get based on the category. Those criteria can easily vary across times and places.
This is a little off of suject but it is interesting never the less.It was just on TV that from Jhon Hopkins med center that you could get diabetes from drinking thw water from the tap, because of the Arsenic in the water. What they did not say is Fluoride[lead and arsenic] that is in the water. Could this be cause the childern get diabetes at a younger age and could this may also have some small effect on autism. You may went to change thooth paste also that if it has fluoride in it. It is going to be intersting to see how that the CDC is going to spin this.
ebohlman noted that we ought not to “forget the difference between a special education service category and a diagnosis,” and I think confusion between a special education code and a formal medical diagnosis is one of the key reasons for confusion here.
@ebohlman. The article was pretty weak, certainly not enough to overturn what has been accepted. The facilitated communications supporters claim the same thing, and FC has been thoroughly demolished in studies.
Besides the I.Q.scores we also have outcomes which are projected to be brighter because the number of higher functioning autistics has increased.
Kanner is anecdotal. What was the size of his population?
Jim Laidler a few years back made the point that states can choose to have more permissive definition than those specified under DSM-IV, and made an especial mention of MN (and Oregon)
How “Educational Assessments” Skew Autism Prevalence Rates
“…Note that Oregon’s autism prevalence has been consistently between two and three times the national average and that Minnesota has recently risen to that level. At the same time, the prevalence of autism in Washington (immediately to the north of Oregon) and California (to the south) are not significantly different from the US average…So, what is happening in Oregon and Minnesota? The theories of pollution, lead poisoning or mercury poisoning cannot explain why they have a higher prevalence of autism than Louisiana, New Jersey, Texas or Mississippi. Oregon and Minnesota do not have higher vaccination rates than the rest of the country, and their parents are not any worse or any better than the rest of the US. The difference occurs because the Individuals with Disabilities Education Act lets the individual states decide the details of eligibility. They cannot be more restrictive, but they can be more permissive. As a result, most states either use a slight modification of the DSM IV criteria or have the diagnosis of autism made by a qualified medical professional. Washington does this, for example, but Oregon and Minnesota use much broader criteria…”,
In nj, an autism diagnosis is made by a neurologist.
After my last post, you may be surprised that I do feel that autistics are more skillful than the testing indicates. Autism masks this. Certainly my daughter can show unaccustomed skill when she is up to mischief.
She is also learning to swim, and can make about four dog-paddle strokes on her own without any floatation aids. Her love of the water, and a bit of pride in this accomplishment is spurring her on. It would be so wonderful if we could find a way to make other learning enjoyable to her as well. Though she is sitting down more for TeachTown than she ever did for any ABA therapist. My hope is that she is finally at a point where it is helpful and great things lie ahead.
In addition to Laidler, Gurney did a study in Minnesota (yes, MN, the same state this post was about) showing jumps in autism classifications in the schools at ages 11, 13 and 15! Now, no one is suddenly getting autism at age 15. Autism, by definition, emerges by age 3. The school system is adding autism programs and people are being placed there, where before they might have been placed elsewhere, or (for many) not placed in any special ed. program. Remember that the school classifications are just classifications. Schools don’t need any kind of professional diagnostic assessment to classify someone under “autism.”
This study? Gurney, et al. Analysis of Prevalence Trends
of Autism Spectrum Disorder in Minnesota.
@mayfly,
I remember you wrote awhile back about your daughter leanring to siwm—this is exciting!
Though I have to say, Charlie’s swimming ability continues to far exceed his learning in other areas.
The StarTrib has an article on the Somali-autism issue. They also mention that Minnesota is one of the few states allowing schools to classify students as autistic — not just for school services, but for general social services, as well.
Now, I realize most schools have trained personnel (my mother is an autism aide / special education support in a California school), but should school nurses be deciding who gets social services?
StarTrib’s article overlapped much with the earlier one from MinnPost.com….. from our experience, school nurses would be a less than ideal choice.
I believe that CDC reported in 2007 on the 2002 study of 8 year olds (1994 birth cohort). The CDC has not done a more recent study, as far as I know. So, the 1 in 150 is actually not a particularly “up to date” bit of data.
Here is an excerpt from Medscape (http://www.medscape.com/viewarticle/551923)
Autism Prevalence
The report tracks the prevalence (number of cases) of autism spectrum disorder cases in 407,578 children in 14 U.S. communities who were 8 years old in 2002.
The communities are in Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia, and Wisconsin.
The study identified 2,685 children in those communities as having an autism spectrum disorder.
Those children’s school or health care records either showed an autism spectrum disorder diagnosis or “unusual social behaviors consistent with an ASD [autism spectrum disorder],” the CDC report says.
Yes, the 2007 study has the most recent prevalence rate, the 1 in 150 figure (an average):
http://www.cdc.gov/ncbddd/autism/addm.htm
But it is a 2007 report-. The *study* is from 2002. This *is* an important distinction statistically— especially when the concern is the number is rising.
The Minnesota, Oregon, and Utah data is newer. (Note: The studies can’t be compared apples to apples, however, as each state had their own criteria for diagnosing autism.)
Iola,
Thanks for highlighting the lag between the cohort being reported and the issued report.
I suspect where this will be interesting is as more data is collected, to give a better handle on both prevalence and incidence.
Even the CDC themselves say within the report that the average number given should not be generally applied beyond the actual study sampling within the ADDM network, at this time.
Just ran across this in our news this PM,
“…Autism: Oregonians worried about having the highest autism rates in America are in good company. Residents of New Jersey and Minnesota have also worried in recent years about holding that title.
That’s because no one knows just how many kids in the U.S. have autism. And there’s no reason to think the rates vary dramatically from state to state. Most studies looking at geography and autism have been inconclusive, said Darryn Sikora, director of the autism program at OHSU’s Child Development and Rehabilitation Center. The best study, conducted in 2002, looked at 8-year-olds from cities in 14 states and estimated one in 150 had an autism spectrum disorder. The highest rate was found in New Jersey, but researchers looked at only four counties there. Those numbers weren’t meant to compare states.
Oregon’s autism claim, like Minnesota’s, is based not on medicine but on education policy. To provide special education services, schools must designate students as having an eligible condition. Many states, including Washington, require medical assessment in this process. Oregon does not — and so has roughly twice the rate of kids labeled autistic as Washington, Sikora said.
The state’s heavy educational labeling causes problems, Sikora said. Her clinic often sees kids labeled as autistic who actually have other conditions. Such misdiagnoses may keep children from getting proper treatments. At the same time, kids labeled as autistic who don’t actually have autism sometimes keep kids who are truly autistic from getting needed services.
– Andy Dworkin
Story: Fact or fiction: Is Oregon killing you?
The Oregonian