Autism is an epidemic, New Jersey is toxic, and other urban myths
February 9, 2007 by Kristina Chew, PhD
Filed under Health
It is a sort of urban myth about the ancient world that the Roman empire fell because the Romans were poisoned by lead from their pipes and cooking vessels. Quite to the contrary, the Romans (for instance, Vitruvius, author of De Architectura, who lived in the time of the emperor Augustus) were aware of the dangers of lead poisoning, which did not lead to the decline and fall of Rome (as noted in this Encyclopædia Romana from the University of Chicago). Rome fell (as I reminded my students this morning) from a complex interplay of forces within the limits of the Roman empire and outside of it; we have been studying how the growth of slavery starting around the 3rd century B.C. wrought significant, and not immediately detectable, changes on Roman society and culture. The great Roman writer of comedies, Terence, was a slave from Africa, as were many of the well-educated Greeks whom the Romans brought back as captives and who taught their children.
Say “Rome fell because of lead poisoning” and students look up, say “oh yeah?”, and shake their heads at those crazy ancient people marching off to conquer the Gauls while wearing sandals. Say “Rome fell because of a number of forces acting in concert and developing slowly over time and now let’s consider what legally defined a person in the Roman Republic” and eyes sneak to the cell phone ill-concealed in a jeans pocket.
Say “an epidemic of autism is being cause by a vaccine or some environmental cause; say “the CDC announced yesterday that the prevalence of autism is now 1 in 150″; say (as the Star-Ledger noted in a front-page story this morning) that “one of every 94 children in New Jersey has autism, the worst rate among the states tested in the most comprehensive study of the disease”—and you’ve got the kind of story that turns heads and fuels calls for a “cure” for autism and “more resources” devoted to finding a treatment. This is a “public health crisis,” Walter Zahorodny, the principal researcher for the study in New Jersey and of the University of Medicine and Dentistry of New Jersey, is quoted as saying in today’s Bergen Record. The Bergen Record quotes one mother whose autistic daughter is 15 year old as saying “‘One in 100? Oh my Lord. I’m shocked’”; another mother of an 11 year old daughter says that this new number is “‘frightening’”: “‘If I were having children in this day and age, I’d be really scared.’” Xue Ming, director of the Autism Center at the New Jersey Medical School in Newark is quoted in the Star-Ledger article as suggesting that the increase in the prevalence rate is due to the “interaction of environmental factors on genes that are predisposed to the disorder, and what state regularly gets bad marks for its environmental hazards than New Jersey? “‘If you look at the EPA’s toxic sites, New Jersey has a lot of that,’” says Ming.
But the rate of 1 in 150 is really not news, as such rates have already been seen in England, Sweden, and elsewhere, as Kev noted yesterday on Left Brain/Right Brain. Indeed, one could argue that New Jersey, with its 1 in 94 rate, is simply ahead of the game. Suzanne Buchanan, head of clinical services for the New Jersey Center for Outreach and Services for the Autism Community (COSAC) is quoted in the Bergen Record as saying that
“New Jersey … is much more knowledgeable about autism than other states. You’re working with professionals in the educational system here who are much more aware of autism than professionals in other states.”
The Star-Ledger also notes that
“Officials suggested one reason for New Jersey’s higher rates is an aggressive system of assessment and treatment for children with autism”
although Zahorodny says that “researchers ruled out the possibility they were overly zealous in identifying autistic children.”
What is “frightening,” indeed, about the CDC’s new study is that it has taken as long as it has for us to count cases correctly—-”New Jersey is Autismland” because of all the specialists, services, the unstinting advocacy of organizations here and especially of COSAC, and—perhaps most of all—the number and variety of schools and school placements and programs for autistic children in this state. It seems to me that the number of toddlers in Early Intervention programs in New Jersey has been rising (as State Health Commissioner Fred M. Jacobs notes in the Star-Ledger) because parents are on the lookout for any signs of developmental delay in their toddlers. I have spent the semester talking on and off to a father whose son has been in Early Intervention and who is thought to have autism, though he has yet to receive a formal diagnosis: This child just turned two years old.
Zahorodny is also quoted as saying that: “Our study can’t rule out something specific to New Jersey. You don’t see thousands of adults with autism in state institutions.” What is “specific to New Jersey” is the intensity and depth of awareness about autism, more than any number of toxic dumps and chromium sites in this state. (As my husband Jim reminds me, when dioxin cascaded onto roadways from trucks laden with recycled oil products back in the 1970s-1980s in Missouri, residents didn’t think that reason enough to move; when we lived in St. Louis in the late 1990’s, we read numerous reports about a nearby town named Herculaneum, its century-plus-old lead smelter, and the contamination of the soil. According to an EPA report, “lead pollution from the Herculaneum facility has led to the contamination of air, water and soil, breaching all elements of environmental regulation,” as stated in a University of Missouri newsletter.)
As for there not being “thousands of adults with autism in state institutions”—some “hidden horde” of autistic adults—a question to ask is, how many thousands of adults with autism are living in our communities among us and we do not even know it? Before you go to click on the “comment” button and write “what do you mean? I don’t see any non-verbal adults flapping their arms living across the street from me on my block—-no one would not have missed seeing all these autistic kids today,” consider this: There are no established and reliable way to screen adults for autism and what we understand, define and identify as autism today may well have been called something else not too long ago. Look at the evolution of the DSM criteria for diagnosing autism to see that separate criteria for autism were not published by the APA until 1980. We have not been able to see all the autism that has always been around us because we did not even know to look for it. As I wrote yesterday in The Meaning of Autismland: Why I see autism everywhere:
We have simply not been looking for the symptoms of autism because we did not even know that we had to. We simply did not know that we were in Autismland until we found that we were already there and had indeed bought real estate and secured our green cards and started to study a new language.
Autism is general all over.
And ought that not be cause for some kind of celebration—-that autistic children (like my autistic son) are not considered anomalies and freaks best not talked about? Far from “feeling sorry” to meet someone “because of autism,” I am always happy to meet and speak with another parent of an autistic child, however much we might differ on our views of treatments or aetiology; I have too many questions to ask when I meet a teacher or therapist or other autism professional; I can see something of Charlie in every autistic child and person I have met or learned about.
The prevalence of autism today is a virtue, maybe even a prize. (p. 170)
writes Roy Richard Grinker in Unstrange Minds: Remapping the World of Autism. The number of autistic persons—an “epidemic” number, if you will—-is nothing to be frightened about, but something to see as the fruit of a complicated interplay of societal and cultural forces, from the aforementioned changes in the DSM criteria to changing views of mental illness and of children’s mental health, to greater numbers of child psychiatrists trained to identify autism, even to a society that (in the spirit of e pluribus unum) acknowledges and, yes, celebrates diversity and all the varieties of human experience.
Despite the numerous news stories you may have read yesterday and will be reading regarding the “skyrocketing” increase in autism, autism only appears to have sprung forth on us, just as Athena, goddess of wisdom, spring forth in full armor from the head of her father Zeus. Autism has been with us for a long time, even though we have only had a name for it—autism—very recently. Just as, by way of comparison, the fact that I (third-generation Chinese American native California woman with an Ivy League education, an illiterate 101 year old grandmother, and a position teaching Latin and ancient Greek at a small, Jesuit, Jersey City college that looks to “the best of Brooklyn and Ireland” for its traditions) am writing here to you might have been equally unthinkable not too long ago—-as unthinkable as saying that, for instance, the prevalence rate for autism in the general population is 1%.
Autism has long been with us, and why we have only begun to notice it has happened due to a number of forces acting in concert.
Rome was not built in a day, and it did not fall because of one single cause either.
I think Rome fell because of mercury in vaccines didn’t it? Yea, yea, that’s the ticket. I remember now:
Veni, Vidi, Vaccinni
Isn’t that the way it happened?
Ita vero! and Mercury himself being the messenger god brought the vaccines courtesy of the cows he stole from Apollo ……. but I digress……
I saw another article that quoted Suzanne Wright of Autism Speaks as saying that the 1 in 150 number meant there was now an urgent need for more early intervention and services for autistic kids. And I thought, “now” you see the need??? We had the same “need” 10 years ago, lady. We “need” to move some of the wealth coming from those blue puzzle pins into services rather than research.
Also in the article above this quote really stuck out for me:
“another mother of an 11 year old daughter says that this new number is “‘frightening’”: “‘If I were having children in this day and age, I’d be really scared.’”
I think the push is on for a prenatal test for autism and scare tactics will make more women have the test and subsequently abort their babies, using a kind of eugenics to end the “autism epidemic.” My husband thinks I’m paranoid.
I think the push is on for a prenatal test for autism and scare tactics will make more women have the test and subsequently abort their babies, using a kind of eugenics to end the “autism epidemic.”
You’re not paranoid. We live in a society that values the perfect self and the perfect family.
We’re all supposed to live in Lake Wobegon, where all the kids are above average, and go to Ivy League schools. Anything less is failure.
Combine this with such trends as the rise in plastic surgery (again searching for an idealized perfection) and the documented increase in abortions to terminate Down’s syndrome kids, and we all know where this is heading.
1 in 60 boys being diagnosed with autism in NJ, and that’s not reason to wonder what’s happening and search for a cause?
“New Jersey is Autismland because of all the specialists, services, the unstinting advocacy of organizations here and especially of COSAC, and—perhaps most of all—the number and variety of schools and school placements and programs for autistic children in this state.”
You’re suggesting that what happened first was that people started opening schools for autism; and then the services like OT, PT and speech got really popular; and then everyone with the diagnosis flocked to NJ? That’s the cart pulling the horse. The reason there are services here in NJ is because there are so many children with autism.
“And ought that not be cause for some kind of celebration—-that autistic children (like my autistic son) are not considered anomalies and freaks best not talked about?”
I agree with you on this, but I think there are two separate issues. One is causation and finding out why our kids are facing so many strange new symptoms like delayed speech, delayed motor skills, horrible gut/bowel problems, etc. The other issue is fighting for equal rights, tolerance, human rights.
“…We have not been able to see all the autism that has always been around us because we did not even know to look for it…”
I’ve been talking w/ my mother about this a lot lately because now that I’ve gotten my son’s diagnosis, I honestly believe without a doubt that my father has Asperger’s syndrome. He’s a “textbook” case (if we could agree on who they would be). If he had been born today, as opposed to in 1947, my father might be more than “barely literate,” might actually have some friends, and might’ve been spared the unrelenting physical, emotional, and verbal abuse he endured by my grandmother because he wouldn’t “pay attention,” “sit still,” “stop talking to himself,” “focus at school,” “stop wetting himself.” My father might’ve actually graduated from high school and might be able to read and write at higher than a 5th grade level.
I know you’ve touched upon this in your blog before, Kristina, but has anyone else “noticed” autistic adults now that you’ve learned about the condition? It’s like someone pulled back the curtain on a man I’ve never really “understood” until the last year.
Minnie wrote: “The reason there are services here in NJ is because there are so many children with autism.”
Yes! There have long been many children here and their parents started calling for these services long ago. You may infer from what I wrote that I am “suggesting that what happened first was that people started opening schools for autism; and then the services like OT, PT and speech got really popular; and then everyone with the diagnosis flocked to NJ?”—–this is a reasonable interpretation of what I wrote, but it is also a simplification. There were many children here who needed these services when the schools opened, and even before. We have lived in numerous places in the US and have met autistic children and adults, diagnosed and undiagnosed, everywhere.
Perhaps the two issues you mention are more entwined than might appear.
Rochelle: I’ll look up previous entries to see……I think my grandfather (maternal) had Asperger’s. A lot of factors; he was a civil engineer, not easy to get along with, always did his own thing—building his own house only with his children’s help, eating green vegetables before anyone thought that was healthy, lacing his shoes up backwards—-those are just some details, but there are more.
More than a few friends and/or acquaintances of both Jim’s and mine is (we have realized) on the spectrum.
“Perhaps the two issues you mention are more entwined than might appear.”
Kristina, can you explain how they are entwined?
They are both the concerns of Autismland dwellers.
“Look at the evolution of the DSM criteria for diagnosing autism to see that separate criteria for autism were not published by the APA until 1980. We have not been able to see all the autism that has always been around us because we did not even know to look for it. ”
The underlying premise of this statement is absurd; namely that I might not have known there was something wrong with my non communicative, headbanging, hand flapping, no eye contact son without APA criterion with which to make this determination.
Thank goodness there was someone there to give a classification to my son; else I would have thought he was completely normal! Without an appropriate set of categorizations I never would have noticed the differences between my son and every other child I came into contact with, or every kid I grew up with.
In fact, people have their children tested for development delays (and thus learn of APA criteria for autism) for exactly the opposite of what you describe; they DO know what to look for in normal children, and their autistic children are very, very different.
- pD
Thanks for writing in here, pD; I think our sons share many of the same behaviors. What therapies have helped him?
Hi Kristina Chew –
Biomedical interventions have had far and away the most impact on Luke. In our case, dietary interventions (SCD), probiotics, and varied digestive enzymes and anti fungal agents have had the biggest impact.
We are also supplementing quite a bit and are investigating mechanisms to reduce oxidative stress and heavy metal removal. Some of those are, shall we say, controversial in some quarters. I’d be happy to point you to some resources on this kind of thing if you are not already investigating them; though this is likely not an appropriate venue. Email me if you want more info.
- pD
- pD
pD, thanks for the info!—we have tried more than a few biomedical remedies for Charlie; our main focus now has become education.
I think that statements such as “Thank goodness there was someone there to give a classification to my son; else I would have thought he was completely normal!” assume that every autistic child presents exactly the same way. Without the DSM evaluation criteria, my son, for one, would be one of the thousands who never received appropriate treatment and modifications.
I think Kristina’s point (which is one similarly presented by Grinker) is that children, like my son, who don’t headbang and who are very communicative, but who have enormous difficulties with focusing both in class and out and with learning to read and write, are the children who would’ve slipped through the cracks if there weren’t DSM criteria to help identify them.
I’ve always been enormously frustrated with autism websites and literature because they only present the most “typical” of symptoms and behaviors. However, no autistic child is typical. Yes, I knew my child wasn’t “normal” but getting a pediatrician, diagnostician, or neurologist to see him as “not normal” was practically impossible. My point being: the DSM isn’t necessarily as beneficial to parents to help determine what’s “normal” or “abnormal” as it is for psychiatrists and psychologists to identify those who would’ve otherwise been overlooked.
Ten years ago, my child would’ve been one of those thousands otherwise overlooked and dismissed as lazy and spoiled with a terrible mother.
Hi Rochelle –
“I think Kristina’s point (which is one similarly presented by Grinker) is that children, like my son, who don’t headbang and who are very communicative, but who have enormous difficulties with focusing both in class and out and with learning to read and write, are the children who would’ve slipped through the cracks if there weren’t DSM criteria to help identify them. ”
We are in agreement that all children display symptoms differently.
Are focussing and reading and writing problems the only symptoms your son has? Becuase I can’t find anything on reading/writing issues in the DSM link provided. Unfocussed, maybe.
From the description you have provided, I cannot see how your son does fit the criteria of autism provided at the link above. Specifically the text reads, “A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)”
By way of example, my son meets 9 of the criteria from the first 12 choices, and both criteria from choices two and three for DSM-IV (1994) and DSM-IVR (2000) as provided by the link. From the description you provided, your son perhaps meets one of those criteria, far and away less than what is required to meet the definition of autism. Please don’t get upset at this armchair diagnosis, but remember all I have to work with is your description.
“I’ve always been enormously frustrated with autism websites and literature because they only present the most “typical” of symptoms and behaviors”
LOL!! You should try from the position of having a completely non communicative child that fits nearly every criteria in the DSM (as well as many other problematic behaviors), and finding websites that tell you that we’ve always had children like this around; we just ‘didn’t know’ to look for them. Children like my son WERE NOT missed 10 years ago, or ever.
BELIEVE ME, if you had a four year old that had zero words, never pointed, never waved, stimmed constantly, engaged in self destructive behavior, didn’t share experiences, showed no imagination, and didn’t understand any abstract concepts, you’d start to take umbrage at the notion of the neurodiverse claiming it’s been there all along at this level; and in fact, it is not something to be cured.
The problem, I believe, is that we are describing two different conditions that have been given a common name and grouped into a spectrum for the lack of better information.
Someone missing their pinky finger and someone missing their arms and legs are both amputees, but the similarities end very shortly thereafter.
-pD
pD, I have to say first that I see the point of your analogy but I wanted to underscore that it is an analogy and that I don’t think it right to quantify suffering based on the level of a person’s impairment, physical or cognitive.
I continue to see commonalities in a child like Rochelle’s and a child like my own son, who has been given the “classic autism” label, and to think that autism and Asperger’s are both autism spectrum disorders. It seems to me that my son may well have been given a diagnosis of MR in previous generations, due to his lack of speech, behaviors, difficulties learning, etc.. I cannot know any of this for sure, of course, short of being able to travel back in time…..
I’m sorry I missed this response when it was originally posted. And, if pD is still reading, I will say that there are other criteria that my son meets besides reading and writing difficulties. Those were just two I pointed out. I’m not feeling inclined to justify at this point how my son meets the DSM-IV.
But, I think the point is accurate that our children are on different areas of the spectrum. I do, like Kristina, see more similarities between my son and hers as time goes by. I do find the analogy troublesome for the same reasons that Kristina identifies–I think it’s getting into a “who’s more disabled/suffering/impaired than the other” that’s neither productive nor relevant to the discussions at hand. And, honestly, without knowing anything about my son (especially considering the fact that we’re on an online forum and are really virtual strangers), I think it’s presumptuous to assume that my son’s impairments pale in comparison to your’s based on a posting here. I think it’s also rude to diminish my son’s autism simply because it doesn’t present like your’s. If your purpose is to increase awareness and services for autistic children, getting into a “who’s more autistic” is neither productive nor ethical.
Back to the issue at hand. An analogy I’ve been thinking about more lately is my son and the Rocky mountains. Just because my son has never seen then, doesn’t know they exist, and hasn’t a conception of what “mountains” are, doesn’t mean that these mountains don’t exist.
In other words, just because autistic children weren’t identified as common 10, 20, or 30 years ago as they are today doesn’t mean they weren’t there. We didn’t have the experience, knowledge, or understanding to know that such “mountains” existed. I think it’s equally presumptuous to assume that just because we didn’t see it for ourselves that it didn’t exist. Especially when we’re going to quantify “autism” based on suffering and impairment.
And, I just hate having to type “suffering” in the same posting as autism…
I realize this post is kinda old, but I have to agree with the Rocky Mountain analogy. Look to the early 20th Century and the American Eugenics movement. Back then (imo, not long ago) “feeble-minded” was diagnosis enough. Especially since education or rehabilitation was not their solution; separation and sterilization was.
Are you advising parents to not seek evaluations for their children who appear to have signs of autism? What is the downside of being diagnosed -Early Intervention therapy? What is the downside of no Early Intervention therapy for a condition like autism? Early Intervention is benign and proven effective in numerous studies while the wait and see approach works only when there is no diagnosis. Early Intervention for a child that doesn’t require it – if anything will stimulate speech and other skills -and then that misdiagnosed child would no longer be qualified for services. In the nonprofit I run -there is no pain greater than that of parents who take the comfortable wait and see approach for years and they learn that they missed the most valuable years to get their child up to speed and be mainstreamed -prior to starting school. In the nonprofit I run -the majority of the children may not be “normal” but they are mainstreamed. While vaccines have not been linked by the CDC to autism – it has been linked to an increase in speech impairments -and that’s just what we are seeing.
Of course the type of children that grew up years ago are not the same as the children today -the diagnosis “autism” has morphed. The name “autism” has been around for years, but while children diagnosed with autism from 1800 to 1938 were diagnosed as having “childhood schizophrenia” that is not today’s autistic child. When the children diagnosed with “childhood schizophrenia” grew up -they were indistinguishable from adult schizophrenics. “Childhood schizophrenia” is not today’s view of autism and hasn’t been for decades -but those diagnosed in the majority are in institutions as adults.
Autism today has become a multifaceted neurologically based communication impairment more so than just a psychological one. There is another multifaceted neurologically based communication impairment condition such as apraxia which like autism appears to have morphed from those diagnosed 50 years ago, but unlike autism -apraxia does not involve social aspects. Multifaceted neurologically based communication impairments should be diagnosed by a pediatric neurologist/developmental pediatrician. Unfortunately because the diagnosis of autism has morphed so much -many children with apraxia -a motor planning disorder of speech -are diagnosed with autism. The problem with this is that ABA therapy while appropriate for most with autism -is highly inappropriate for those with apraxia. In addition there is an increase in those diagnosed with autism who has co existing apraxia. All these conditions are diagnosed by neurodevelopmental medical doctors. I co authored the book The Late Talker with neurodevelopmental pediatrician Marilyn Agin MD who was Medical Director for NYC Early Intervention for about a decade, and Malcolm Nicholl who is an International Journalist.
There is a dramatic rise for some reason with children with multifaceted disorders such as autism and apraxia http://www.cherab.com/information/geiermd.html …and they appear to be more frequent in areas that are toxic in regards to our uncensored grouplist. As Dr. Geier, a geneticist at John Hopkins who is behind the study in the above link said to me “We can’t have this percentage of our population unable to communicate. We need to find out what is causing these conditions for the sake of the future of the human race.”
Anyone can write an article on the internet…but if you have a child that you suspect may be a late talker or have other developmental delays -seek evaluations from medical professionals. But if you want to read an article from someone who grew up in NJ and has two children that were “late talkers”….
http://www.cherab.com/news/Save.html Or Jeannie’s story who also grew up in NJ and has one child with apraxia and ADHD, one with autism…and one that sadly died of cancer at 4.
http://findarticles.com/p/articles/mi_go2827/is_200202/ai_n6792565
We moved from New Jersey and now my son with apraxia is the only one in our town that we know with apraxia (in NJ you can literally go block to block and find a child!) But hey, perhaps that too is a coincidence…but I’m just happy there are researchers out there looking into the increase to help save the children from these horrible disorders.
=====
Lisa Geng
President CHERAB Foundation
Communication Help, Education, Research, Apraxia Base
http://www.cherab.org
Co Founder Speechville
http://www.speechville.com
The Pink Mission
http://www.thepinkmission.com
772-335-5135
“Help give our cherubs a smile and a voice”
My son has greatly benefited from Early Intervention (he was born in Missouri, actually, and diagnosed in Minnesota), and it is a great thing that there is so much autism awareness in New Jersey that children can be detected at such a young age.
All I know growing up I didn’t know or see one kid in our community displaying the behavious my autistic nephew has. All our cousins, friends and neighbors had pretty much normal kids. There could be different levels on the spectrum, maybe some that went unnoticed, but we pretty much have a tight Greek community and know everyone and no one back then had full blown autism the way my nephew does, and the way countless of our friends kids no have. They need special eduction and therapy whereas nobody needed that growing up. So I don’t buy the theory that we are better able to diagnose it today. Many of my friends have kids that don’t speak, bang their heads, spin themselves and cry all the time. I never saw any kids growing up with these disorders. Just my view. Thank you.
Note to Lisa Geng:
Mark Geier is NOT on the faculty of Johns (not John) Hopkins University.
I would also suggest to you that citing his work does nothing for your credibility. Just a friendly tip.
Lisa said: “As Dr. Geier, a geneticist at John Hopkins…”
If he is a geneticist ANYWHERE, let alone Johns Hopkins, then call me Albert Einstein and Bill Gates.
At best, he is a mediocre doctor who is rejcted as an expert witness by the courts.
All this talk about New Jersey having an especially high autism prevalence is interesting, if not particularly true.
As it turns out, USDE data from 2006 shows that New Jersey is number 12 (out of 50) in autism prevalence, at 49.5 per 10,000 (US average is 42.3 per 10,000 that year).
Minnesota is number one (must be all those lakes – and mosquitos) at 94.9 per 10,000 – almost twice the New Jersey prevalence.
Oregon – that toxic wasteland and industrial eyesore – is number two, at 92.6 per 10,000.
Indiana is number three, coming in at 69.2 per 10,000.
Again, New Jersey isn’t all that much above the national average, so if it’s true that “…in NJ you can literally go block to block and find a child [with autism]…”, then they must be all over the block in Minneapolis. Or Portland (Oregon) or Indianapolis.
This seems to be nothing more that simple parroting of autism-related “talking points” without any true understanding.
Prometheus
“If I were having children in this day and age, I’d be really scared”.
———————————-
Interesting, considering that the information in the ADDM survey, refers to data from 2000 and 2002 surveying those who were 8 years old at the time.
I think in discussing the report, which is where the numbers come from, it is worth reading all the tables and the full version found in MMWR Surveillance Summaries (Feb 9, 2007) for the cohort being counted, the method used for the prevalence count, the sample (because representative counties, and not entire states are being counted), and relative comparisons between states.
See chart p. 12: order-NJ>>GA (where the CDC is located and the source of past data)>other states in the ADDM system,>AL . So one might assume from reading the report without an additional point of comparison that NJ has the highest count. MN and OR are not in the ADDM report.
“What part of New Jersey is included in the ADDM ASD Study?
4 counties (Essex, Union, Hudson, and
Ocean) including metropolitan Newark
Autism Spectrum Disorder (ASD) Prevalence, 2000 Number of 8-year-old children identified with an ASD: 295
Total prevalence of ASDs: 9.9 per 1,000 (1/101)
Boys: 14.8 per 1,000 (1/68)
Girls: 4.3 per 1,000 (1/233)
White, non-Hispanic: 11.3 per 1,000 (1/88)
Black, non-Hispanic: 10.6 per 1,000 (1/94)
Median age of ASD diagnosis 4 years, 4 months”
(Which means cohort born in 1992 and diagnosed in 1996-1997. Range not specified)
“Autism Spectrum Disorder (ASD) Prevalence, 2002 Number of 8-year-old children identified with an ASD: 316
Total prevalence of ASDs: 10.6 per 1,000 (1/94)
Boys: 16.8 per 1,000 (1/60)
Girls: 4.0 per 1,000 (1/250)
White, non-Hispanic: 12.5 per 1,000 (1/80)
Black, non-Hispanic: 7.7 per 1,000 (1/130)
Hispanic: 9.7 per 1,000 (1/103)
Median age of ASD diagnosis 4 years,7 months”
(Which means cohort born in 1994 and diagnosed in 1998 or 1999. Range not specified).
p.24
http://www.cdc.gov/ncbddd/autism/documents/AutismCommunityReport.pdf
So comparing this particular report to IDEA data, esp. if relating it to current data, looking for assortment among states might be comparing apples to pineapples. I think that better ideas on trends may come with the next set of data from ADDM.
As to what the IDEA data says and why there might be discrepancies, with OR and MN highlighted:
How “Educational Assessments” Skew Autism Prevalence Rates, James R. Laidler, M.D.
http://www.autism-watch.org/general/edu.shtml
FWIW, and if this is accurate, from Pat Sullivan’s blog, Dr. Mark Geier’s CV
http://www.streamload.com/UIC/DrMarkGeierCV.doc
“1979-1982 Assistant Professor, Department of Gynecology and Obstetrics, the Johns Hopkins School of Medicine, Baltimore, MD
1981-1984 Assistant Research Professor, Psychiatry Department, Uniformed School of the Health Sciences, Bethesda, MD”
So there might have been a stint at Johns Hopkins, but since there is a little overlap of the two appointments, these might not have been F/T or tenure-track positions. Usually if folks are granted tenure, based on research, publication and quality therein, you see at least “Associate” professor in the CV somewhere. Johns Hopkins is not a current faculty appointment, and judging from Dr. Geier’s recent rejections as an expert witness, I am not sure that past job descriptions bear especial relevance to current standing.
Prometheus,
You also continue to parrot the “talking points” because I am sure you know that USDE does not use clinical diagnosis as criteria for educational labels.
All I know growing up I didn’t know or see one kid in our community displaying the behavious my autistic nephew has. All our cousins, friends and neighbors had pretty much normal kids.
And yet, they had to have been there. Cognitive disability has always been very common. At least 1% of the population is cognitively disabled in any culture at any point in time.
In 1920 California, about 60 in 10,000 persons resided in state hospitals for the insane. It can’t be nearly that high nowadays.
If you didn’t see any kids like that, it’s because they were hidden away and because institutionalization of youngsters was rampant.
It can be an interesting exercise to look up the various psychological classifications that were in use a while back, say 50 to 100 years ago. Most of them are words like Cretin, idiot, moron, and imbecile. If I remember correctly the words primarily referred to what kinds of labor you would be capable of. So where did all the autistics go before Kanner mentioned them in 1943? Mental Institutions being referred to by names that we don’t even remember are scientific anymore… We would probably claim it wasn’t science if somebody tried doing it today. That’s why nobody seemed to notice they were around… when you have a relative in an Institution you pretend they don’t exist because they are embarrassing. Sure everybody noticed the handflapping and headbanging… but all handflapping meant back then was this is a person who might not be so good for doing dexterous things with his hands, therefore they are such and such subvarient of a retard. Handflapping just meant handflapping, putting a list of symptoms together doesn’t make it something different and 100 years from now calling someone autistic may be nothing more than a childish insult and somebody will be writing a post saying “now why don’t we see any of these people 100 years ago” and the real answer will be because we don’t have the uber brain scanners that will exist in the future etc… Not because the problems will be much different.
This kind of confusion is covered by neurolinguistics, you might call it a gestalt shift.
Good article! I completely agree. Autism’s increased prevalence is because of increased diagnosis. Also the definition of autism has continually expanded now encompassing what is known as highly functional autism. In NJ we have high incomes (on average). This leads to more parents seeking diagnosis.
I run a special needs scout troop in NJ. If you feel that your child can benefit, visit my website (http://troop454bsa.org)
Rochelle, I saw your post about your father, and it made me think about my cousin. He was tormented as a child, preteen, and teenager. He never fit in, and when he tried to fit in, he wasn’t let in. He and I are 27 now. I have been teaching for 5 years and have a lot of experience with 6th-8th graders with PDD. It dawned on me last year: my cousin and his father on on this challenging spectrum.
I agree with this blog. We have been in Autismland. We’re just starting to notice. I agree with the theory that NJ’s numbers are so high due to the services and keen screening systems we have in NJ. Many many people struggle with PDD, and they grow up unaware.
Thanks for sharing this, Joseph. My father was tormented as a child and teenager, too, and still experiences a lot of social anxieties and difficulties. He doesn’t have any friends, just family members who, of course, love him and want to hang out with him. But, I can’t recall my father ever having any friends.
I “see” PDD and Asperger’s everywhere now. I don’t understand how people can say there aren’t adults with ASD or PDD. I hope your father and your cousin are doing well, though, and I appreciate your feedback.