Is Autism an “Epidemic” or Are We Just Noticing More People Who Have It?

By Guest Blogger | July 11, 2012 4:37 pm

Emily Willingham (Twitter, Google+, blog) is a science writer and compulsive biologist whose work has appeared at Slate, Grist, Scientific American Guest Blog, and Double X Science, among others. She is science editor at the Thinking Person’s Guide to Autism and author of The Complete Idiot’s Guide to College Biology.

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In March the US Centers for Disease Control and Prevention (CDC) the newly measured autism prevalences for 8-year-olds in the United States, and headlines roared about a “1 in 88 autism epidemic.” The fear-mongering has led some enterprising folk to latch onto our nation’s growing chemophobia and link the rise in autism to “toxins” or other alleged insults, and some to sell their research, books, and “cures.” On the other hand, some researchers say that what we’re really seeing is likely the upshot of more awareness about autism and ever-shifting diagnostic categories and criteria.

Even though autism is now widely discussed in the media and society at large, the public and some experts alike are still stymied be a couple of the big, basic questions about the disorder: What is autism, and how do we identify—and count—it? A close look shows that the unknowns involved in both of these questions suffice to explain the reported autism boom. The disorder hasn’t actually become much more common—we’ve just developed better and more accurate ways of looking for it.

Leo Kanner first described autism almost 70 years ago, in 1944. Before that, autism didn’t exist as far as clinicians were concerned, and its official prevalence was, therefore, zero. There were, obviously, people with autism, but they were simply considered insane. Kanner himself noted in a 1965 paper that after he identified this entity, “almost overnight, the country seemed to be populated by a multitude of autistic children,” a trend that became noticeable in other countries, too, he said.

In 1951, Kanner wrote, the “great question” became whether or not to continue to roll autism into schizophrenia diagnoses, where it had been previously tucked away, or to consider it as a separate entity. But by 1953, one autism expert was warning about the “abuse of the diagnosis of autism” because it “threatens to become a fashion.” Sixty years later, plenty of people are still asserting that autism is just a popular diagnosis du jour (along with ADHD), that parents and doctors use to explain plain-old bad behavior.

Asperger’s syndrome, a form of autism sometimes known as “little professor syndrome,” is in the same we-didn’t-see-it-before-and-now-we-do situation. In 1981, noted autism researcher Lorna Wing translated and revivified Hans Asperger’s 1944 paper describing this syndrome as separate from Kanner’s autistic disorder, although Wing herself argued that the two were part of a borderless continuum. Thus, prior to 1981, Asperger’s wasn’t a diagnosis, in spite of having been identified almost 40 years earlier. Again, the official prevalence was zero before its adoption by the medical community.

And so, here we are today, with two diagnoses that didn’t exist 70 years ago (plus a third, even newer one: PDD-NOS) even though the people with the conditions did. The CDC’s new data say that in the United States, 1 in 88 eight-year-olds fits the criteria for one of these three, up from 1 in 110 for its 2006 estimate. Is that change the result of an increase in some dastardly environmental “toxin,” as some argue? Or is it because of diagnostic changes and reassignments, as happened when autism left the schizophrenia umbrella?

To most experts in autism and autism epidemiology, the biggest factors accounting for the boost in autism prevalence are the shifting definitions and increased awareness about the disorder. Several decades after the introduction of autism as a diagnosis, researchers have reported that professionals are still engaging in “diagnostic substitution”: moving people from one diagnostic category, such as “mental retardation” or “language impairment,” to the autism category. For instance, in one recent study, researchers at UCLA re-examined a population of 489 children who’d been living in Utah in the 1980s. Their first results, reported in 1990, identified 108 kids in the study population who received a classification of “challenged” (what we consider today to be “intellectually disabled”) but who were not diagnosed as autistic. When the investigators went back and applied today’s autism diagnostic criteria to the same 108 children, they found that 64 of them would have received an autism diagnosis today, along with their diagnosis of intellectual disability.

Further evidence of this shift comes from developmental neuropsychologist Dorothy Bishop and colleagues, who completed a study involving re-evaluation of adults who’d been identified in childhood as having a developmental language disorder rather than autism. Using two diagnostic tools to evaluate them today, Bishops’ group found that a fifth of these adults met the criteria for an autism spectrum diagnosis when they previously had not been recognized as autistic.

Another strong argument against the specter of an emergent autism epidemic is that prevalence of the disorder is notably similar from country to country and between generations. A 2011 UK study of a large adult population found a consistent prevalence of 1% among adults, “similar to that found in (UK) children” and about where the rates are now among US children. In other words, they found as many adults as there were children walking around with autism, suggesting stable rates across generations—at least, when people bother to look at adults. And back in 1996, Lorna Wing (the autism expert who’d translated Asperger’s seminal paper) tentatively estimated an autism spectrum disorder prevalence of 0.91% [PDF] based on studies of children born between 1956 and 1983, close to the 1% that keeps popping up in studies today.

One study in South Korea found a significantly higher rate of autism, but it used a different methodology and different study population. In fact, the part of the Korean study that was most comparable to other studies found an autism rate of .8%—about the same as in other countries.

Toting up these three known reasons for why autism prevalence is rising—consistent clinical prevalence rates across generations, many people who fit the criteria for autism going unidentified, and evidence of diagnostic substitution—we don’t need to dig much further to explain what looks superficially like an “autism epidemic” in the U.S. Because of greater awareness of autism and the flexibility of the diagnostic tools used, we’ve recently been diagnosing people with autism who previously would have received other diagnoses or gone unidentified.

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And now, after the autism rate’s 70-year boom, it may soon take a sharp drop—but that will have nothing to do with environmental factors. The manual currently used to make mental-health diagnoses, the DSM-IV (the “bible of psychiatry”), is in the process of being updated. The proposed DSM-V criteria for diagnosing autism would, according to some studies, shift down the number diagnosed. In fact, Asperger’s and PDD-NOS would disappear altogether. If the number of people diagnosed as autistic decreases under the new criteria, as predicted, should it send us scurrying to look for environmental factors that are decreasing to explain the decline? Obviously not.

These evident explanations for rising autism rates don’t stop many, many people from hopping on the autism-cause bandwagon to shill research, books, and “cures” for the “epidemic.” The MO in nearly every case is, as Baroness Greenfield might say, pointing to a rise in some alleged problem, pointing to the rise in autism, and insinuating a link between the two. But there are two problems with this obsessive focus on misleading connections.

Problem one is that as we now have what is probably a more realistic picture of autism prevalence than ever before, we’re ignoring the fact that autistic adults are also walking around in these numbers, as the UK study suggests. Autistic adults may not be seeking a “cure” for autism, which many consider to be a part of who they are, but the autistic adult community could use attention, support, and resources that all too often go to misguided efforts to find one delivish, monolithic cause of the alleged epidemic.

Problem two relates to understanding the causes of autism, another obsession for many people. Homing in on new or recently increasing environmental factors shifts attention from always-present factors that might actually be involved in causing some cases of autism. Does autism have environmental components, such as parental age or interacting factors in the womb? Probably. Do these environmental components have to show an increase to confirm an association with autism? No. Let’s not let fright words like “epidemic” and “toxin” distract us from what the data really say. Any true increase in autism prevalence, if there is one, is likely quite small. The data suggest that autistic people have always been here, whether diagnosed or not.

  • http://www.gamesandtoysforautisticchildren.com JJ

    You make some great points. This is a similar issue with other conditions where there isn’t a pretty obvious physical diagnosis such as prostate cancer. It’s the same case with things like depression, where it’s unclear whether there are actually more people clinically depressed today or whether we have changed our diagnosis criteria or people are just being more aware of it. Hopefully as the science of autism diagnosis there will be some more objective measures and we’ll be able to analyze if rates are really increasing.

  • Jay Gordon, MD, FAAP

    Any pediatrician can tell you that there are just plain lots more kids with ASD than ever before and the condition–not just the diagnosis!–is becoming more common. The increase may have absolutely nothing to do with vaccines–the most controversial discussion–but it certainly has to do with environmental impact on genetic predisposition. To suggest otherwise ignores everything from CDC and NIH publications to common sense. Your article is truly disappointing and does a great disservice to children and families affected by autism spectrum disorder.

    Jay

  • http://www.sarnet.org Lenny Schafer

    Autism is a real disability that is profoundly restrictive. You cannot have hordes of undiagnosed autistic adults walking around untreated any more than you could have blind people going around unnoticed. Read the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) and you see that autism is a serious handicap and a mortal risk. The CDC says that the autism prevalence rates are now 1 in 88. It is an absurdity to suggest that there are such numbers of disabled adults walking around untreated or undiagnosed. If they exist, where are they? Perhaps the writer is confusing Asperger Syndrome with autism. Aspergers is related to autism but it is not a part of the counted 1 in 88 and is a separate diagnosis than clinical autism. There is no scientific justification for downplaying the very real explosion in autism in order to take away the urgency in finding the causes and cures .

  • http://twitter.com/epiren Ren

    My big problem with people who say that the PREVALENCE number increasing is significant of an epidemic is that that’s totally wrong. Prevalence is the number of existing cases divided by the total population. What 1 in 88 is telling us is that there are more autistics living in the population. The “epidemic” could very well have gone in reverse or stopped, and you’d still see the prevalence rate going up. To declare it an epidemic, you have to look at incidence rates, and that number for autism is hard to come by.

  • MH

    Here’s the elephant in the room: diagnosis or no diagnosis, epidemic or no epidemic: we are slowly coming to the realization that the needs of a large portion of the population are not being met. These needs vary in intensity from person to person, but meeting them means that a whole, large group of people can move from being trapped by their limitations to contributing members of society.

    I am very, very tired of all the focus on “causes,” from my favorite – the helicopter parent to the chemophobia mentioned in the article. How about we sit up, take notice, and realize that all human beings are not the same and don’t have the same needs? A good half to three-quarters of the “therapy” offered to people on the spectrum could just as easily be presented as a classroom curriculum; I bet all kinds of people who don’t qualify for a diagnosis would benefit from them.

    We don’t expect people to enter kindergarten reading and writing – even though many kindergarteners do. Why is it we expect all kindergarteners to have innate social skills and speech?

  • https://www.facebook.com/acetaminophenhealthissues Jen in TX

    I still think acetaminophen (or to be more specific, sulfate deficiency) “provoked” the autism epidemic, (H/T Peter Good, and yup, I will use *that* word)

    I’ve been pointing this out for the past 4 years in various forums, and I’ll do it again…the increase in autism parallels the increase in acetaminophen use following the Reye Syndrome/aspirin link, the aggressive J&J marketing of Tylenol after the ’82 & ’86 cyanide tamperings, and I believe that this explains the regressions that some parents report after vaccinations, since the ACIP started recommending acetaminophen prophylaxis before DTP vaccination in 1987. And then there’s the whole problem of the increase in the use of acetaminophen/opioid combinations like Vicodin, Percocet, etc., including in pregnant women. We seem to be awfully comfortable medicating pregnant women these days, forgetting that perhaps the developing fetal brain might be exquisitely sensitive to all these pharmaceutical cocktails, or TOXINS? (yup, I used *that* word, too, NAPQI is a NASTY TOXIN!!!!eleventy1111!!!!)

    Oh nevermind, let’s continue to ignore the evidence supporting a tylenol/autism link and pretend that all this autism has always been with us, and we just never noticed all those non-verbal, hand flapping kids before, because to do otherwise might just mean that those wackaloon antivaxers might have gotten it partly right.

  • DRV

    Have the numbers of all disabilities increased or are they the same as they have been? In college we learned that about 10-20% of any school population would have disabilities. It rises and falls more so because of the communities services (health care, schools, government programs) rather than anything to do with the community environment. So overall are the total numbers rising, falling, or maintaining, considering all of the usual disabilities; CP, Down’s and other trisomme diagnosis, Prader Willie, etc.?

    If the total percentage is rising then there must be more children being diagnosed with Autism Spectrum disorders. If the percentage is the same, then diagnosing of Autism disorders is better, if the percentage is decreasing (which I doubt) then medical science deserves an applause and we need to stop fretting about why, and continue to make progress with prevention, diagnosis, and education.

    All children can learn.

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  • Mary

    What an excellent assessment. I find myself explaining frequently that there wasn’t even a diagnosis of autism possible prior to the middle of the last century, and therefore family history of not having autism is essentially meaningless. It’s true of a lot of conditions that we have names and specifics for now, which were something else in the past.

    And the misguided blame of everything = “toxins” is such an unhelpful discussion point in all the threads around the intertubz. Flailing wildly does not help us.

    I wish there were more solid answers for families. But it’s a hard problem with likely multiple aspects.

    (And may I add that I’m stunned this hasn’t drawn the toxin crowd…yet…).

  • http://leftbrainrightbrain.co.uk Matt Carey

    “Problem one is that as we now have what is probably a more realistic picture of autism prevalence than ever before, we’re ignoring the fact that autistic adults are also walking around in these numbers, as the UK study suggests. ”

    Unfortunately, we not only are ignoring it, but we have people actively denying even the possibility. When I mentioned autistic adults, and the fact that they are an under-identitified and under-served population, I got hissed at by the audience in the IACC meeting.

    We didn’t need the UK studies to say there was a good possibility of a large population of undiagnosed adult autistics. And with that possibility came the responsibility to try to identify and support them appropriately.

    For some reason a lot of people think “adult autistic” means “person with asperger diagnosis”. Adult autistics–even those not correctly diagnosed–include people with intellectual disability.

  • Maurine Meleck

    Maybe if scientists actually understood what autism is, then we wouldn’t even be having this discussion. Autism is not a mental disorder, but a metabolic one that affects every organ in the body. Most suffer from such things as oxidative stress, immune dysfunction, encephaopathy, and inflammatory bowel disease. If scientists ever bothered to really study some of the affected children and their specific conditions, they might understand what autism really means. Sadly, most writers choose to repeat the mantra of the government health officials, drug companies and doctors—that there is no increase in autism–only better diagnosing or they say–over diagnosing. Which is it? Must be genetic or formed in utero. Never do they ask for that important fully vaccinated vs fully unvaccinated study of children, which has never been done.My, how this writer and so many others try so hard to make the epidemic go away. Sadly, it won’t, no matter what kind of jibberish they throw out in the media. By the way, that British adult study of numbers was a sham-even admitted by most autism authorities. They made telephone calls and asked the person if he or she was autistic. They even asked the home less-altho they must have used tin cans and a string for that.
    Maurine Meleck, SC

  • Susan

    The problem with this theory is that 50 years ago there were not 1 in 88 insane, mentally challenged or challenged children. No matter how you look at it, more children have learning disabilities at the present time than in the past. In my development alone, I know of two other significantly affected children, including my own daughter. When I was growing up, I only knew 1 learning disabled child and she was not autistic by any standards. Autistic children do not “blend” in with general population children and there disabilities would not have been overlooked. If autism has not increased in prevalence than there should have been children 50 years ago or so labeled with a psychiatric or learning disability diagnosis in the same number. Were there? No. I agree that some children receive the label when they are minimally affected but I see so many more severely autistic children today than I did even 15 years ago, and I was a pediatric nurse.

  • Blackheart

    The physiology and co-morbidity of Autism speak loudest for an effective and real rise in Autism or alternatively a real change in severity of presentation.

    30-50% of ASD children have co-morbid epilepsy that is generally lifelong and has a clear effect on learning and quality of life.

    “The data suggest that autistic people have always been here, whether diagnosed or not.”

    That would mean that medical professionals not only misdiagnosed 1% of the paediatric population in regards to ASD but also a substantial population of children with epilepsy / seizure disorders.

    Seems unlikely …

  • http://www.doublexscience.org/ Emily Willingham

    @Lenny, you are mistaken when you say that people with Asperger’s syndrome “are not counted as part of the 1 in 88.” You say, “Autism is a real disability that is profoundly restrictive. You cannot have hoards of undiagnosed autistic adults walking around untreated any more than you could have blind people going around unnoticed. Read the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) and you see that autism is a serious handicap and a mortal risk.” Autism is not a “mortal risk” unless you’re talking about the family members who kill autistic people because the world has convinced them that the diagnosis carries sufficient hopelessness to warrant that. Autism is a disability, but like many multifactorial and complex disabilities, it doesn’t manifest in a binary all or none way, as total blindness does. Indeed, as the UK study shows, there are autistic adults walking around, struggling mightily and either diagnosed with nothing or with something else, as Bishop’s study suggests. Asperger’s and PDD-NOS are autism spectrum disorders as well as autistic disorder, and the CDC numbers include them.

    @Blackheart The rates I’ve seen are that one in four autistic boys will develop seizures in adolescence. But that of course is a rate that’s reliant on whatever diagnostics are used for *autism* simultaneously. Were all autism diagnosed, the rate of seizure disorder would likely be much less in the autistic population.

    As for any personal anecdotes, etc., from commenters–for every one of those, I’ve got one of my own. That’s why I looked at the science instead of making inferences from personal experience. For example, a pediatric nurse mentions seeing more severely autistic children today than 15 years ago. Perhaps that’s because 15 years ago, they would have been diagnosed as something quite different. Studies suggest that indeed, they were. You also say that 50 years ago, there were not 1 in 88 “insane, mentally challenged, or challenged children.” The bizarre, generalist labels don’t describe autism across the spectrum, so I can’t see how that assertion is relevant.

    @Maurine You say, “Most suffer from such things as oxidative stress, immune dysfunction, encephaopathy, and inflammatory bowel disease.” That is untrue. These are severe disorders with identifiable manifestations. There is a subset of autistic people who may have a syndrome linked to metabolic/mitochondrial dysfunction, but that’s not “most.”

    @JayGordon As with the above regarding anecdata, for your “any pediatrician can tell you,” I can get you a pediatrician who will counter with, “because previously, we didn’t pay attention to the signs of autism and directed attention elsewhere.” Your being a pediatrician doesn’t make your anecdotes science. This article presents what the science says about diagnosis and how it has shape-shifted over time, resulting in accompanying shifts in diagnostics. That’s not a disservice to anyone, and it’s dramatic to say otherwise.

  • Blackheart

    “@Blackheart The rates I’ve seen are that one in four autistic boys will develop seizures in adolescence.”

    Autism and epilepsy Nature 2011 15% – 30%

    http://www.nature.com/nm/journal/v17/n4/full/nm0411-408.html

    Epilepsy and regression

    http://vectorblog.org/2012/05/when-a-child-loses-milestones-consider-sleep-eeg-studies/

    “They found that 100 of the 147 children indeed had prominent spikes in their EEGs during the night – and about one in five of them did not have known epilepsy.”

    That’s another 20% you could add to ASD children.

    Boston’s Children’s Hospital

    http://vectorblog.org/2012/05/preventing-autism-after-infant-seizures/

    “We already know that there’s some kind of connection between epilepsy and autism: Children who have seizures as newborns not uncommonly develop autism, and studies indicate that about 40 percent of patients with autism also have epilepsy.”

    This is one of the most serious consequences of autism,

    Mortality in autism: a prospective longitudinal community-based study.

    http://www.ncbi.nlm.nih.gov/pubmed/19838782

    The study group, which constituted a total population sample of children with these diagnoses, were followed up in Swedish registers. Nine (7.5%) of the 120 individuals with autism had died at the time of follow-up, a rate 5.6 times higher than expected. The mortality rate was significantly higher among the females.

  • Blackheart

    I forgot the exciting thing is diagnostic and treatment regimes that clearly identify epilepsy in autism at the earliest possible time can lead to some fantastic outcomes.

    http://vectorblog.org/2012/05/preventing-autism-after-infant-seizures/

    If 50% of ASD children have co-morbid epilepsy which is quite well within the bounds of our current understanding then we could bring about great change to outcome.

    The identification of seizure risk genes like SCN1A and CNTNAP2

    [Autism, epilepsy and genetics].

    http://www.ncbi.nlm.nih.gov/pubmed/18302128

    “The rate of epilepsy in autism is higher than in other developmental disorders and estimates point to a frequency range of between 7% and 42%. Between 40% and 47% of autistic children suffer from clinical epilepsy. Onset of epilepsy may occur at any age.”

    “…candidate genes (FOXP2, WNT2, subunits of GABA receptors, neuroligins, ARX, SCN1A, SCN2A, MECP2, CDKL5 and DLX5).”

    Absence of CNTNAP2 leads to epilepsy, neuronal migration abnormalities, and core autism-related deficits.

    http://www.ncbi.nlm.nih.gov/pubmed/21962519

    Think of that 50% of autism children, carers and parents having a whole new quality of life …. That’s Real Autism Science

  • http://twitter.com/epiren Ren

    I’d like the folks in the audience, especially the good Doctor Jay, to explain to me the following epidemiological finding:

    A group of children with autism and a group of children without autism are both assessed for environmental exposures from mercury and other heavy metals to drugs like acetaminophen and even ultrasounds or blood transfusions. This is done time after time here in the United States and abroad. Time after time, both groups (autistic and non) are found to have equal odds of exposure to the theorized causative agents of autism.

    Never mind. You don’t have to explain it. I understand it very well.

    Rather, how about you tell us how much more you need these things to be studied? How many resources do you want poured into finding a cause that has pretty much been elusive for almost half a century?

    Ten more studies? Twenty? One funded by millionaire conspiracy theorists or people with enough money to pay for a rather large hacienda in Texas? One funded with money that can go to developing proven ways and programs to help parents deal with autistic children and older people with autism to become productive, happy, and self-sufficient?

    Please, enlighten us. Tell us what more you want.

    My prediction is that studies will be demanded on the next thing that someone blogs about.

  • Thomas

    Ms. Willingham: Thanks for your article. Judging from the outraged responses you’ve gotten, you’ve really struck a nerve. Keep up the good work.

    Just another autism parent.

  • http://www.doublexscience.org/ Emily Willingham

    @blackheart 15-30% in the Nature piece is probably where I got the 1 in 4. I’ve not said that there is not an association between autism and epilepsy/seizures and as the parent of an autistic son entering adolescence, often a time of seizure onset, I’m even more acutely aware of it now. I’m also aware of autistic adults who have seizures. Nevertheless, with the shifting diagnostics, the rate of co-morbid seizure disorder would likely shift, as well.

    You cite genetics studies to support what you’re saying, and I appreciate that. You also mention directly addressing epilepsy and seizures in autism, which fits with an argument I’ve made before: We need to home in on the factors that require mitigation–for any neurobiological condition.

  • Carl

    We live in a world where the rate of information is exponentially doubling at a rate that has never occurred in the entire history of humankind. Perhaps the human brain simply can’t process this load of information input. In the end, will all of this be diagnosed as evolution at work?

  • Puppetmistress

    I think that the rise in ADD, ADHD, and Autism stems from overdiagnosis. Lately there are so many ‘conditions’. Intermittent Explosive Disorder for the people who can’t control their temper. Oppositional Defiant Disorder for kids who don’t listen. Many of these diagnoses come from doctors who are paid to prescribe, not cure. I’ve met some supposedly ADD or Autistic kids and most of them are just a little hyper or socially awkward, and the rest of the time function normally. Also, do these numbers factor in people who fake their symptoms so they can sell prescription drugs? It’s easy to act unfocused and report an inability to concentrate. I’m sure some people actually suffer from these problems, and medical advances are probably allowing us to detect and treat more of them. But there are plenty of awkward or hyper children that just need some time to grow out of their childish behavior, not therapy, labels, and pills.

  • http://leftbrainrightbrain.co.uk Matt Carey

    Emily,

    when Sue Swedo presented to the IACC this week, she mentioned that in California (home to both Lenny Schaefer and myself), diagnosticians give autistic disorder (autism) about 90% of the time. She said this was due to the fact that services are only given for autism diagnoses, not Asperger.

    Frankly, any time you are dealing with a person who says “real disability”, you should use caution.

    Susan, the statement above “The problem with this theory is that 50 years ago there were not 1 in 88 insane, mentally challenged or challenged children.” is incorrect. I have copies of New York Times articles from 100 years ago citing about 2-3% “feeble minded” children.

    Maurine: “By the way, that British adult study of numbers was a sham-even admitted by most autism authorities. They made telephone calls and asked the person if he or she was autistic. ”

    Why make such statements? They are patently false. The UK adult study is considered a major accomplishment (cited as one of the top studies by the IACC). Also, did you bother to read the methods of the study? If so, why are you misrepresenting them?

  • http://www.visionsofautism.com D.R. Stratton Sr.

    It would be easy or possible to find out real numbers of those in school with autism! Have all schools report to the CDC (public and private) all students enrolled from preschool through 12th grade. The government knows the real numbers, they pay extra for these kids every day they go to school. Like buses, special teachers, all the ARD meeting know who have autism in their schools! Ask any teacher or school district have you seen autism increase in last 10 years? See what answer you get it will be YES!!!

  • lilady

    Great article and great analysis about the “autism epidemic”, Emily

    I see that the Pediatrician to the Stars, Dr. Jay, has weighed in, with more of his inanities. Dr. Jay has been in forefront of the contingent, including Age of Autism… and its political arm the Canary Party…to defeat the passage of California AB 2109. Why are you against the passage of this bill, Jay? It doesn’t restrict a parent’s right to “opt out” of vaccines, but it does ensure that parents receive correct information about the Recommended Childhood Vaccines Schedule and the serious, sometimes deadly diseases they prevent.

    Don’t you think it is time you updated your website and revise your opinions about vaccines, Jay:

    http://drjaygordon.com/vaccinations/mmrnote.html

    Feb 23, 2010
    MMR Vaccination, An Important Notice from February 2006

    “I no longer give or recommend the MMR vaccine. I think that the risks exceed the benefits. Obviously, discuss this with your doctor but please know that the CDC declared rubella officially eradicated in the U.S. in 2005, measles remains a rare disease in America (30-40 cases/year) and mumps is also not very common.”

    “The Prevnar vaccine is too new for me to recommend. The number of cases of Pneumococcal ear infections which could be prevented is very small and the number of cases of meningitis prevented is also small. I have no quarrel with doctors who recommend the shot or with parents who choose to get it. I have very strong objections to advertising this immunization to the general public on television. I don’t think enough information can be disseminated in 60 seconds.”

    Jay, the Prevnar-7 valent vaccine became available more than 10 years ago and recently the Prevnar-13 valent vaccine which includes protection against the 19-A strain of S. pneumoniae was approved. Just how long does a vaccine have to be licensed and available for you “to recommend”?

    http://www.cdc.gov/vaccines/vpd-vac/pneumo/fs-parents.html

    http://www.immunize.org/photos/pneumococcal-photos.asp

    BTW Jay, don’t you think it is “inappropriate” for your “lactation specialist” to be advising parents on your website, about delaying vaccines?

  • Nan

    To the people who deny the existence of autistic adults: What does autism look like?

    My entire life was spent trying to call attention to something I had no words for. Everyone told me it did not exist, it could not exist, to just do things differently, that there was nothing actually going on but wrongful insistence of the validity behind the “abnormal behaviour”.

    As an adult autistic, now diagnosed, it is clear that my childhood experience (the emotional frustration, quirky behaviour, learning difficulties, interests, similarities, etc.) could have been more engaged had people listened and accepted instead of dismissed.

  • https://www.facebook.com/acetaminophenhealthissues Jen in TX

    Ren says:

    “A group of children with autism and a group of children without autism are both assessed for environmental exposures from mercury and other heavy metals to drugs like acetaminophen and even ultrasounds or blood transfusions.”

    Please provide a link to the study that has shown equal odds of exposure to acetaminophen in autistics and non-autistics. As far as I know, there are none.

    Thanks.

  • Jen

    Quick answer from someone who has worked with kids since the mid eighties: yes, it has become epidemic; no it is not just that we are ‘noticing’ it more. I worked in an institution (childrens’) for a year in late eighties (just before de-institutionalization) and the etiology for most kids who were severely/profoundly handicapped there was known. Many had Down syndrome, quite a few had cerebral palsey (seems to be much less of that now), hydrocephalus (again seems to be much less of that now), and there were kids/babies who had genetic syndromes. Dr. Jay would probably be able to elaborate from his perspective. Honestly, I do feel there was the odd child there who had autism and I had even seen some adults back then whom I suspect had autism. But, having said that, the number of people having autism (which they would have just labelled ‘mentally retarded’ back then) was nowhere near what it is today. And now they actually have identified some new syndromes that they didn’t know about back then. It’s definitely something in the infant’s environment and now we have the most vaccinated generation of people having children. Who knows what the epi-genetic effects will be.

  • http://twitter.com/epiren Ren

    No, Jen. It doesn’t work this way. We’ve discussed this before, you and I.

    YOU are the one making the accusations. So how about YOU provide your evidence that acetaminophen is the causative agent of autism. All you will find in the literature is the biologic pathway of clearing acetaminophen from a human, followed by blog posts declaring that glutathione or any other metabolite from acetaminophen metabolism is what causes autism.

    Indictments work like that, Jen. YOU provide the compelling evidence to prove your point.

  • https://www.facebook.com/acetaminophenhealthissues Jen in TX

    YOU implied in your post above that the link had ALREADY been studied. I asked you to provide a citation. You can’t, because it HAS NOT BEEN STUDIED.

    Waring’s research on sulfation problems in autistics IS compelling evidence, at least it is in my not so humble opinion, considering that I have witnessed these effects firsthand in my own severely affected child with autism. (Yeah, yeah, anecdotes…not data…I know.) Some choose to ignore it. Or hijack it to support a link between “heavy metals” and autism. (Yes, I’m looking at you, SAFEMINDS)

    To clarify my position, this does NOT mean I think that acetaminophen is the SOLE CAUSE of autism, though given its ubiquity, will likely make it one of the worst offenders. (Yes, that’s my opinion.) Lots of things can saturate the sulfation pathway, including metabolites from gut bacteria, drugs, and yes, I suppose certain metal exposures. I’ve already provided links to this evidence in other forums. Sorry if it’s not “compelling” enough for you yet. More on this is forthcoming, though, so be kindly let me know when you think the evidence is “compelling” enough.

    (One notes that we’ve now gone from demanding “evidence” to demanding “compelling evidence.” Some might call that a goal post shift. )

  • lilady

    We are still looking for any study that acetaminophen given to a child causes autism. I see one PubMed “study” that questioned parents of children on the spectrum about acetaminophen use for fever. Could you provide other studies that have been published in peer reviewed journals that confirm this?

  • Lawrence

    @Jen – I believe rain in August causes autism. PROVE ME WRONG!

    Seriously, your opinion means about NOTHING, until you can back it up with actual Science.

  • Blackheart

    As far as the adult studies by Brugha and Bishop, although interesting and now part of the broader ASD literature, are difficult to “blend’ against other more robust epidemiology from a global perspective that have all shown a significant rise.

    As far as Bishop is concerned there are two points to note 1. 38 adults was the sum total 2. The parents completed the observational schedules.

    Brugha 1. 30% of households refused the survey, only 56% individuals completed (7461)

    In Phase 2 – 849 were selected (How is not made clear) 62 refused 7.30% / 157 could not be contacted (Why is not made clear) that’s another 18.5%

    —————————————————————————–

    1. Autism is a disorder that centres around social skills , language difficulties, communication difficulties and anxiety. This should have suggested to the researchers that those ‘withdrawing’ were a significant part of the very cohort they were seeking.

    2. When the findings are analysed they present a 9 to 1 male to female ratio – that should have indicated a significant flaw.

    3. “Sampling excluded institutional residents and adults with intellectual disability severe enough to prevent them from participating in the assessment.”

    If and that’s a big “if” these figures were accurate then it would actually suggest the rate was significantly higher considering the large withdrawal rate.

  • http://twitter.com/epiren Ren

    @Jen

    Yawn. Anything else?

    Here’s a snack for you: http://www.autismspeaks.org/science/grants/early-exposure-acetaminophen-and-autism?destination=science%2Fgrant-search%2Fresults%2Fhertz-picciotto

    That’s right! Autism Speaks researched it. Why don’t you go over and see what their findings are? Then, as the awesome epidemiologist you are with all your “research”, why don’t you tell us what the findings mean, what the strengths and weaknesses of the evidence is, and why we really don’t need to flip out about acetaminophen?

    This is as much as I’m going to discuss this ridiculous, straw-grabbing theory with you anymore, Jen.

  • http://leftbrainrightbrain.co.uk Matt Carey

    Why are’t “autism” organizations in the US calling for a better study then?

    Why didn’t US “autism” organizations call for a good study on adult prevalence years ago?

    The answers are pretty obvious. They are so wedded to their failed ideas of a vaccine-epidemic that they couldn’t have their notion challenged. So what if we don’t appropriately support our disabled adults? So what if we don’t learn now what we can so our kids can be supported later?

    Instead they put all their efforts into “cures” like chelation and attempts to overthrow scientific evidence with a publicity campaign.

    Both bets failed.

  • http://leftbrainrightbrain.co.uk Matt Carey

    The above was in response to the discussion of the UK adult autism prevalence study.

  • https://www.facebook.com/acetaminophenhealthissues Jen in TX

    Ren wrote:

    “That’s right! Autism Speaks researched it. Why don’t you go over and see what their findings are?”

    Why don’t YOU post a link to the actual study? All you’ve posted is an Autism Speaks web page saying that the pilot study has been completed. As far as I know, (and I do keep close tabs on this) the findings have not been released. I’m happy to be shown evidence to the contrary.

    “This is as much as I’m going to discuss this ridiculous, straw-grabbing theory with you anymore, Jen.”

    So instead of discussing this like a grown-up, you’re going to stomp out of the room like a petulant child? Mmmkay. Thanks for playing.

  • Chromesthesia

    Enough of this hair on fire panic nonsense. Autistic people exist. They have ALWAYS existed and all of this nonsense about vaccines, which has been dis-proven over and over doesn’t do a damn thing for autistic people.

    Most of these folks never want to listen to actual autistic people. They want to dismiss them as being too high functioning or too autistic even understand the issue.

    But, if this many people are considered autistic, why not try to learn more about autistic people, their perspective and their way of looking at the world rather than shoving questionable treatments like MMS into every orifice they can?

    Because people would rather think about autism in the most negative way possible and line the pockets of people pushing things like MMS and supplements and special diets when what people who are autistic really need is empathy and support.

  • Blackheart

    In regards to environment and genes that is one of the issues addressed here one would do no better than to have a close look at Joachim Hallmayer and Stanford University colleagues work.

    Genetic heritability and shared environmental factors among twin pairs with autism.

    http://www.ncbi.nlm.nih.gov/pubmed/21727249

    Hallmayer calculated the following using gold standard diagnostic tools environmental factors account for approx 58% of autism whilst genes only 38%.

    Investigation into such issues as maternal and neonatal / postnatal environments will become increasingly important. Infections , fevers , bacteria, viruses and the GI tract are important areas of continuing investigation.

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  • Mike

    Do you really think that we wouldn’t have noticed Autism 25 years ago? We weren’t living under a rock. Only someone whose life isn’t touched by Autism would think that.

  • http://s17.postimage.org/dyi1y3m9b/image.png Autism Epidemic

    The rate is actually going up. No, we don’t yet know why that is: http://s17.postimage.org/dyi1y3m9b/image.png

  • Krebiozen

    “The problem with this theory is that 50 years ago there were not 1 in 88 insane, mentally challenged or challenged children.”

    That doesn’t fit with my experiences. I can remember two children in my year who were very likely autistic when I was at school more than 40 years ago, that’s at least 2%. I also volunteered at a hospital for the mentally handicapped which provided residential care for hundreds of adults and children 30 years ago. Many residents suffered seizures and many undoubtedly had developmental disorders such as autism. Most people living in the area didn’t even realize that these people existed.

  • http://discovermagazine.com Iain

    Okay, autism has been on the rise since the 1950′s which coincides with that most popular entertainment device the television. Therefore television is responsible.

    2 unrelated facts I put together as an example. How many times are we subjected to this kind of junk thinking every day? Also how many people buy into the conclusion?
    Hint – politicians do it a lot.

  • Gaythia Weis

    In line with Iain’s “reasoning” above, I believe that it is worth noting that another thing that has changed since the 1950′s is the decline in the prevalence of institutions for those diagnosed as mentally handicapped or mentally ill and a co-current rise in mainstreaming efforts. In the past, those who might today be diagnosed as autistic might have been diagnosed as in need of one an institutional setting. Some families chose to keep their loved ones at home, usually in a sheltered setting and out of general public view, partly because they may not have wanted to be pressured into institutionalization. Visibility is not a good measure.

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  • Blackheart

    Actually I like this chart drawn from Bach et al The Effect of Infections on Susceptibility to Autoimmune and Allergic Diseases.

    http://evmedreview.com/?p=92

    http://www.nejm.org/doi/full/10.1056/NEJMra020100

    Infectious agents can induce autoimmune diseases in several experimental settings, some of which have clinical counterparts. A variety of mechanisms have been invoked to explain these observations, including molecular mimicry and an increase in the immunogenicity of autoantigens caused by inflammation in the target organ.1 Paradoxically, infectious agents can also suppress allergic and autoimmune disorders. In this review, I will summarize the evidence that the main factor in the increased prevalence of these diseases in industrialized countries is the reduction in the incidence of infectious diseases in those countries over the past three decades.

  • vel

    autism is very vague. And vague “definitions” gather a lot of things being put under them.

    I wonder, has the number of “mentally retarded” people shrunk at the same rate e.g. those people who were in the special ed class in my elementary school and high school? It seems that parents much prefer to have their kids called autistic than “mentally retarded”.

  • Thomas

    “I wonder, has the number of “mentally retarded” people shrunk at the same rate e.g. those people who were in the special ed class in my elementary school and high school?”

    Just about – see the charts here http://photoninthedarkness.com/?p=158

  • Ned

    As a father of two kids diagnosed with autism, I haven’t spent a day wondering what caused it in them, but have spent every waking moment trying to help them “recover.” The gains I have seen in my twin three year olds, thanks to services provided by the State of California, are amazing.

    My heart goes out to children and adults who do not live in a place like California which due to the laws passed in the late 70′s has an infrastructure of amazing and effective services.

    I appreciate the author’s concern for those adults who are walking around untreated now with the condition.

    My concern for the change in the DSM-IV diagnosis language is that I fear it will make it harder for some people to receive services they would now receive – services that might go a long way to making them happy, adjusted, and contributing members of society.

  • http://Thisone Snuff1

    Let’s make sure we have a name, diagnosis and treatment for every tick and murmur. We have already medicated our entire adult population let’s go for the kids too. The pharmy companies love you.

  • Mark Buehner

    “I’ve been pointing this out for the past 4 years in various forums, and I’ll do it again…the increase in autism parallels the increase in acetaminophen”

    Its also mirrored the popularity of U2. Correlation does not imply causation.

    And on another note if I see one more alleged MD lead with ‘everybody knows’ im going to bang my head off my desk. The research as specifically cited in this article demonstrates that this is largely if not entirely an issue with diagnosis… and generally at the low end of the spectrum which is WHY they go undiagnosed.

  • Melissa

    I would be willing to bet that this emphasis on downgrading the prevalence of autism and eliminating completely diagnoses like Asperger’s are attempts to lessen the government’s obligations of providing specialized medical care and, if needed, Supplemental Security support for the disabled–if there is no diagnosable condition, no support is required.

    The tendency to downplay the need for various diagnostic tests and to claim that treatment is not efficacious or necessary for other conditions like prostate cancers marches hand-in-hand with this–I point to our changing healthcare system now joined with governmental bureaucracy.

  • jc

    The idea that autism has been steady historically but undiagnosed is bunk. When I grew up we knew who the mentally impaired kids were. A very small number of kids who’d be classified as Down’s syndrome today, another small set with varying degrees of birth defects and a small number with psychiatric issues. What I don’t remember seeing anywhere at any time was autistic kids. So why do I know so many today who conspicuously have this disorder?

  • Marie

    @drstratton: I am a special education teacher who worked only with autistic kids and intellectually disabled kids the first ten years of my career. Since that time I have worked in mainstream schools, and you’re right — the number of kids diagnosed with autism has gone up. However, the numbers of kids who are diagnosed with autism who I don’t recognize as autistic until somebody tells me they are (I worked with kids who were REALLY autistic) has also gone up. Most of the kids I come into contact with now who are diagnosed as autistic would not have been diagnosed as autistic the first ten years I worked worked with this population. Personally I think it’s WAY over diagnosed these days.

  • Marie

    “Let’s make sure we have a name, diagnosis and treatment for every tick and murmur. We have already medicated our entire adult population let’s go for the kids too. The pharmy companies love you.”

    Exactly. No personality quirk goes undiagnosed as a disorder these days. Nobody takes responsibility for who they are anymore; after all, every human foible can just be medicated away.

    As a person who has worked with kids with real disabilities my whole life (and some without real disabilities, but erroneously categorized), I am so sick of our tendency to turn everything into a disability. Kids are no longer responsible for their grades, or just accepted for not being academic superstars (for being average or just averagely dumb) . . . If they’re not performing at the upper end of the bell curve, it’s gotta be a disability. If they’re unhappy, it’s gotta be clinical depression. If they’re irresponsible, it’s gotta be ADHD. If they’re impulsive or angry, it’s gotta be bipolar disorder. If they’re spoiled brats, it’s gotta be oppositional defiant disorder. If they’re nerdy and socially awkward, it’s gotta be asperger’s. If they’re just plain dumb, it’s gotta be a learning disability or autism. God forbid they’re just human with all the individuality that used to be recognized as character before the primacy of HMOs and pharmaceutical companies(which eliminated the role of psychiatrists as analysists/therapists and confined their role to that of psychopharmacology — perscribing drugs after a once monthly 40 minute chat).

  • Marie

    @jc: Kids with conspicuous autism used to be institutionalized. That’s why you didn’t see them around.

  • GC

    This theory has been debunked by multiple peer reviewed in-depth studies. What new peer reviewed or other scientific evidence do you offer? Why offer theories when we have well developed studies? Who or how does it help to continue to hypothesize that the facts are not facts. I can agree that there is not yet a cure (duh). I also agree there are too many that are trying to use this as a new profit source (grrr). But having worked with some of the most scientific and professional researchers, I can tell you that the methods they are using aren’t just speculation. The fMRI and other biological findings and tests largely are align the DSM measures.

  • Marie

    And there was no such thing as “special education” before 1976. At least not in mainstream, public schools. Most autistic, intellectually disabled kids,mentally ill children, and kids with cerebral palsy were institutionalized and removed from society and public view. Or had short life expectancies. Which is why they are so much more visible today. Not because there are necessarily more of them born (although there might be more of them staying alive for longer). It wasn’t until the 1990s that a real proactive effort was made all over this country to mainstream and de-institutionalize children with these disabilities. I’ve worked with these kids through all of that, and I can tell you that in addition to the kids who have real disabilities, there are plenty of kids diagnosed with disabilities today who would not have been diagnosed with disabilities twenty years ago, so we are getting not only more kids diagnosed, but more exposure to the kids who used to be hidden away, which results in this public impression that the numbers of kids with disabilities has exploded in recent years.

  • Blackheart

    A couple of commenters have suggested that there is a “Hidden Horde” of adults in the community with autism and they base that on 1. anecdotal evidence and 2. Incomplete education data.

    Some points need to be considered if they wish to make their arguments

    1. Education in most parts of the world is compulsory for all children. Special Education provision and facilities are readily available to all the populace in the western developed world and have been for a longer time than the rise in autism.

    2. Many epidemiological studies studying a range of ‘environmental triggers’ with large populations have shown a rise in prevalence. If the hidden horde theory is correct then this data needs to reconsidered.

    3. Educational data is more complex than has been suggested previously for example – http://nces.ed.gov/fastfacts/display.asp?id=64 Note the differences in Intellectual Delay / Autism / Developmental Delay / Emotional Disturbance / Specific Learning Disabilities …

  • Blackheart

    More data here – Number and percentage distribution of children and youth ages 3–21 served under the Individuals with Disabilities Education Act (IDEA), Part B, and number served as a percentage of total public school enrollment, by disability type: Selected school years, 1980–81 through 2009–10

    http://nces.ed.gov/programs/coe/tables/table-cwd-1.asp

  • Farnsworth Du Pont

    As an epidemiologist, it never ceases to amaze me how individuals will create epidemics out of whole cloth, or cite personal observation (n=1) in lieu of actual statistical evidence. I realize that parents want answers and/or explanations, but sadly this fervor tends to impede their ability to look at the issue at hand objectively. The author is spot on WRT the evolution of the diagnosis of autism, and those trying to base their “science” on historical observation in search of trends, environmental changes/causes et al typically conduct “research” until they collect enough snippets of “data” until they can write an opinion, paraded out as a “study”, to justify their beliefs. The sad fact of the matter is that sometimes there is no one or nothing to blame. Disabled kids are born every day. Just love and accept them.

  • Mark Buehner

    You guys are arguing in circles. We all know autism is a spectrum, for instance Asperger’s didnt get diagnosed in a widespread fashion until the 90s (and not all at once even then). So by the logic displayed above, in the 80s Asperger’s didn’t exist? Where are all these hidden adults with Aspergers? Well, of course we know they are indeed out there. Even more severe cases were stigmatized in a such a way that children were mainstreamed (my turn for anecdotal evidence, we had one boy in my class that was a severe case but was never diagnosed). Where were those kids? Right where you would expect them to be, getting called horrible names and struggling through school. Where are they now? Probably not much different.

  • Ted

    There are some great points made, but fact is at this point, anyone who says there is definitely an increase in cases, or that the number is staying steady, or that there are fewer… overall, worldwide… is overstepping their bounds.

    Nobody knows definitively what the actual trend is.

    With this in mind, I hold both the pro and anti epidemic ideology as flawed.

    We need better data to make more certain, reasonable conclusions about this.

  • http://DiscoverMagazine SC

    When I started teaching 40 years ago, the autism rate was much lower. However, Asberger’s was not a recognized disability. We kept such kids in the classroom and intimidated them into acting normally. They became very productive people; always somewhat socially awkward but many preferred jobs they did alone such as roofing, lawn care, statistitians, researchers.

    If a child’s IQ was not in the average range, they could not be considered autistic, because the behaviors are often caused by low IQ; if a child’s IQ is low, all such children will show stereotypical behaviors.

    The biggest reason autism rates jumped: Social Security payments for autism.

    The other reasons the the numbers jumped:
    1. Broader definition of autism to include Asperger’s and Low IQ
    2. More babies saved under 2 months pre-term, low birth weight often contributes to neurological disorders.
    3.Higher tolerance for behaviors, fewer parents cooperating with coorection techniques.

  • Pippa

    I am the mother of an autistic adult, and a child psychiatrist who has worked with autistic children for over 30 years – and some autistic adults.
    We used to not diagnose autism when a child has mental retardation. There was no point. Everybody ‘knew’ that there was nothing that could be done, and the parents already faced one stigmatising diagnosis for which nothing could be done. When I started working there were many young adults and adults in the disabled population who were autistic but not diagnosed as such because of this. They simply led quiet lives in institutions or stayed at home.
    We now can treat, to some extent, autism and with the resulting hope stigma is reduced and parents are more willing to seek diagnosis. In the past less severely effected children grew up as best they could, (often suffering from being teased and ridiculed by peers and adults,) to be awkward adults, many of whom populate departments of mathematics and physics in universities. Some adults are totally reliable workers at menial tasks well below their intellectual abilities. Some are physicians, lawyers, accountants, teachers, soldiers – - – What they have in common is that they struggle with many parts of life including understanding social nuances, intimate relationships and dealing with change. A diagnosis helps them to understand that it is not their fault and how they can cope better with the challenges they face.
    My son is in university – yes, he studies science, and philosophy (the latter much to our surprise.) He is still learning how to make and keep friends, and why he should bother to struggle to do this. Most of the time no one would know he is autistic now – but it still makes life much harder for him than most young adults. He is the best explanation for why 1% of adults could be autistic and not noticed – he keeps himself very much to himself. He has learnt not to ‘stim’ in public, to look at people when they talk to him and to hold a conversation about topics other than math. In other words, to survive, he has learnt to act as if he is typical and some of the time people don’t notice.
    Note, I say ‘typical’ and not ‘normal’. It is normal for some people to be autistic. Challenging, frustrating, expensive etc. etc, but totally normal.
    Autism is not a metabolic disease, though some metabolic disorders can lead to autism. It is a common presentation of what are probably many neurodevelopmental differences. One cause or cure is unlikely. And if there was a cure, I am not convinced that we would encourage our son to take it, or that he would want to. Autism is a part of who he is and we love him. It has many advantages, such as a logical and scientific approach to life, a very low risk of substance abuse and irresponsible decisions, etc. What he and others need is not a cure but to find a way that he can be accepted and do what he can as a responsible member of our society.

  • Observer

    When I was in school in Ontario in the 1940s and early ’50s, there were no children in my school who had serious problems. There were no Down’s Syndrome kids, no mentally retarded kids, no crippled or handicapped kids, no Asperger’s or visibly autistic kids. Why not?

    I was startled to learn from one of my classmates in my teens that she had a brother with Down’s syndrome. It dawned on me later, when a nephew of mine developed autism at a very young age, that perhaps these kids never hit the public view. My friend’s brother was kept at home (this was in 1954-5), and had some private tutoring.

    My nephew went to a private school populated with kids who had a whole range of problems. However, with the change in attitude of the public, he was eventually able to go to public high school, and even graduated from University. These kids were never seen in the public system in the past…they were an inexplicable embarrassment to their families, and they were hidden away.

    Maybe that explains why we seem to have an increase in autism and other diseases. These kids are now mainstreamed into public schools, and are encouraged to develop to their limits. Formerly they weren’t counted into statistics, and no one could study the incidence of these problems because there was no way to seek them out.

    I think it is wonderful now what is being done for these people. The world is becoming far more accepting of them.

  • Rob N

    Interesting comments. I wonder if I would have been diagnosed with autism (Aspergers, but still part of the 1 in 88), if I were growing up today. I didn’t speak in sentences until after my 3rd birthday, had repetitive actions (hummed in monotone), and didn’t interact well with others (painfully shy, they called it). Later in elementary school I was reported as “uncoordinated”. But I received no special attention and my saving grace was that I was book smart and listened well, so the adults liked me. Unaware of my uncoordinated label, I learned to juggle and ride the unicycle.

    Eventually I went to college for engineering, had a couple awkward dates (didn’t kiss a girl until well after college, forget about 2nd base or beyond). But in my mid 20′s, I “grew out of it” like several other shy people I know, now I’m happily married and have a house and a family. I can even use the phone to call for pizza, something that scared me silly in my 20′s. What would having the label Aspergers have done for me? I’m not sure these diagnoses are a good thing. Severe cases, yes, something like mine, probably not.

  • Chris

    In 2005, my son received an official diagnosis of Asperger’s Syndrome. Based on my increased awareness of the behavior associated with this syndrome, I believe my husband and mother have AS, as do several of my mother’s relatives. None of these adults had any formal diagnosis. All of them had difficulties socializing in childhood, but found ways to be successful as adults. They now blend in quite well with a neuro-typical population, except for being viewed as “eccentric”. All of this gives me great hope for my son, and for many of the young people we have come to know who have AS. If they can just get through childhood (and our education system) with their sense of self-worth intact, they’ll do fine. My heart goes out to those whose on the autism spectrum whose prognosis is not so positive.

  • Fred’s mom

    Another thought:

    Although my son, daughter, and self, have always wondered if we leaned toward autistic, we have not been diagnosed as such. Like Rob N., we don’t interact well with others, have repetitive actions, and have difficulty with “too much input.” I have always wondered about that last piece. How much of autism is a result of too much input? If the brain does not filter out some of the “noise” around us (in whatever form that takes), it is easy to become overwhelmed, withdrawing just to survive.

    While I consider myself borderline autistic, and struggle to function in the world, I note that when I am under stress, in pain, have hormone imbalances, lack sleep, etc…I become “more autistic”. Touch makes me shrink back, noise startles me….or I struggle not to put hand over ears to muffle it, I fall into rocking behaviors, etc… As my surrounding conditions improve, my autistic-like responses improve.

    Knowing all the stresses of the modern world (less time/place for quiet & relaxation, constant noise & visual input, crowded conditions, stress etc…) it does not seem strange to me that more people are showing signs of autism. Although chemicals/toxins are a stressor, I see no reason to assume that other factors might not also contribute to autistic behaviors. Our society has decided that the loud, exuberant personality is THE acceptable model. For those who are much more reflective, it is difficult to be present in such a world.

    Think also about artists… cutting off ears, withdrawing from society, committing suicide, substance abuse. By definition, artists see the world differently. To do so, they must be open to more sensory input from the world around them. Perhaps the difficulty that some artists have functioning in the world is in trying to function with too much input…similar to a form of autism.

  • http://none Vicky

    Amazing information but as an avocate for 25 years in the field of Fetal Alcohol Spectrum Disorders, I see clinicians taking the easy way out, and that is to diagnose many conditions on the Autism Spectrum.

    Why:
    1. There is an eligibility door to services with a funding stream for Autism ( none for FASD or other complex mental health needs, especially with all the cuts to services in every state .)

    2. It lets the Doctor off the hook for having to ask the hard questions of a birth mother and then meet the need for her possible treatment.

    3. No blame for the diagnosis of Autism.

  • Katya O.

    agreed with Dr. Jay Gordon, “environmental impact on genetic predisposition” is very likely to be the cause.

    For anyone interested in solutions and who may care less about exact etiology, there are various diets that are known to halt the development of, and in the very least can improve many symptoms of autism, especially if started early. Dr. Natasha Campbell-McBride’s Gut and Psychology Syndrome Diet has documented effects.

    Best of luck to all!

  • Michelle

    I did not know I had Asperger’s until well into my 30′s. I struggled all my life up to that point, frustrated, not knowing why I was so different and other kids when I was younger treating me the way they did. I didn’t realize. I have since learned that my sister suspected as a teen, studying psychology in school, that I may have some form of Autism or something similar. Later in our lives she discussed with a counselor, who explained to her about Asperger’s. About a year or so later I got signed up with the Advocacy up our way, and my diagnosis of both Asperger’s and ADHD were confirmed by my psychologist. It has been a very long road for me.

  • http://N/A Stanley Tolle

    I am an adult, 57, that is presently considered on the Autistic Spectrum. There were a lot of diagnosis as I went to school. Dis-organized Dyslectic was one of them. It was recognized that there was some sort of language deficiency that was causing me academic difficulties but the social difficulties were not thought of as a deficiency. Final allot of the symptoms have been put together as connected to a mild form of autism. The cause appearing to be some sort of developmental brain wiring problem. I kind of suspect that Autism, learning disabilities, certain compulsive behaviors have a simular origin in the development brain wiring (White Matter apposed to the Gray Matter) which will exhibit different symptoms depending the location and extent the wiring has been altered. Maybe some thought should be given to developing a diagnosis along the lines of brain wiring with concentrations in certain areas.

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  • Tina

    for DRV:
    A shift share analysis of United States Department of Education data produced alarming national trends. The results of this analysis indicated a 15% increase in all disabilities in 2002 over the statistical data available in 1995. During the same period autism saw a 240% rise in diagnosis. This project collected data for all fifty states and demonstrated the growth rate for autism in each state. (Baker, 2004).
    Baker, Dana L. “Public Policy and the Shaping of Disability: Incidence Growth In Educational Autism.” Educational Policy Analysis Archives 12 (2004). 16 Mar. 2004. ERIC Clearinghouse. Education Public Studies Laboratory. 10 Oct. 2008.

    Marie:
    I agree with you that before Public Law 94 142 there was minimal school attendance by children with considerably minor disabilities and we almost NEVER saw children with severe disabilities.

    As a special education teacher for more than 25 years I have always been fascinated with children with autism. I have worked with hundreds and enjoyed every moment of the challenge. The current debate about prevalence, incidence, epidemic status and possible causesof autism will fuel further study and hopefully provide better insights into the disability and its likely various causes. I am not a diagnostician or a biological scientist so I won’t venture to share my opinion in those areas. I am glad to see the current discussions. Twenty five years ago when I first began working with children with autism I was on my own doing my own research to learn all I could. Today I have other research to help me be the best teacher I can be for all children with disabilities. We have grown as a society as a result of these discussion.

  • Lauren

    @ #67 Rob N.

    I think about this issue every day. Is an Asperger diagnosis negatively impacting the child in the long run? How come I got through school just fine–no diagnosis or label or special ed–despite having some of the exact same issues you had and my son has?

    Fact is, there has been a huge change in education in the US since I was a kid. NCLB has left our schools panicked over every little thing any child does in the classroom that is not exactly in line with everybody else. It’s very important for public schools to have high standardized test scores (in some places teachers are facing losing their jobs if the scores dip, or they stand to get a bonus is the scores rise), so schools swoop in on any child who is different in the classroom. Where twenty years ago a painfully shy or “different” child who was academically fine might have been seated in the back row where he’d be free to hum quietly or occasionally flap his hands, that child is now “identified” and “given services” in school. He’s “pulled out” off and on throughout the day because his behavior is “too disruptive.”

    It’s no secret that schools “identify” kids with ASD (and ADHD) these days, either because they get federal funds for each special education student (I’ve heard this said but am not sure it’s true) or because they need an official way to keep the kids who are “different” from potentially bringing test scores down. Even really bright kids, like my son, struggle in today’s classroom, with the innumerable boring worksheets, piles of useless homework, and repetitive test prep now taking the place of actual instruction. This tedious atmosphere is related to NCLB and was not typical of schools in the 60s, 70s, 80s, or 90s. Schools are run like prisons now (see: PBIS), with the student body expected to behave in a very specific way. Quiet in the lunchroom! Don’t get up from your desk! No bathroom break until lunch time! Fifteen minutes to eat your lunch! No recess at all! And on and on. Most typical kids can suck it up and accept this unpleasantness, but kids with Asperger and ADHD can have terrible trouble in this kind of atmosphere.

    The fact that you “listened well” in school was indeed your saving grace. The kids who get by today without an “identification” are the compliant children with good grades, the kids who do not present any challenge to the teacher who is trying to drill every day for a standardized test.

    I’m not saying that kids should not be identified or diagnosed with Asperger Syndrome or ADHD. I think the diagnosis can be key to understanding the child and helping him in the ways he needs help. But I do believe that some of the increase in Asperger and ADHD diagnoses is due to NCLB and our intolerant, inflexible schools.

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  • Hannah

    I think it is important to take into account that one’s memory of an experience or period of their life can be highly flawed. In many cases, hindsight is not, in fact, 20/20.

    I’m seeing a few people in the comments who insist that they have personally seen more autistic children in their work than previously. I would like to respectfully remind everyone that your memories are now from 15-3o years ago, and your mindset regarding autism was undoubtedly different. Now that there are different criteria for autism, you notice it more, but before you did not possess the same diagnostic information and thus probably did not categorize the autistic children you saw as indeed autistic. When you access your memories today, you are searching for the children who might have been autistic, but you will likely not find many because your brain didn’t commit them to memory as autistic. You may remember the more extreme cases, but not the ones who today might be considered ‘overdiagnosed’. Not all children diagnosed as autistic are clearly autistic at first glance.

    It’s like being told to count, both in the past and in the present, all of the times you saw a specific book. If you didn’t know about that book before you probably would only count one or two incidences of seeing it. But now that you are on the lookout for it, you will see it a lot. It doesn’t mean any more copies of that book were printed.

    I hope that made sense; it is a bit confusing.

  • Benison O’Reilly

    Perhaps Lenny Schafer should read before he comments. The 1 in 88 does most assuredly include Asperger’s syndrome. The 1 in 88 is for ASDs, not classical autism.

    http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w

  • Marcia

    I am a speech-language pathologist and have worked in the same elementary school for 25 years. I work with a highly experienced team of professionals who have dedicated their lives to serving to children in public schools. We are not concerned with reimbursement from medical insurance. We do not receive any profit from the marketing and sales of quick-fix, cure all programs. Our work is not dependent on grants or the results of our research. Our work will not make headlines or sell magazines. It will not go viral and be used as a link for web advertising.

    I have never contributed to any on-line debate on this topic and have no desire to do so again. However, after reading the comments above I had the feeling that I was a child at a cocktail party, l listening to a room full of adults argue about the statistics of neglected children. What is the point? Why argue about headlines and inconclusive studies? Does anyone really think that statistics will give us an answer? Or is this just a way to avoid fear.

    Here is the simple truth. No jargon. No numbers: The children that are enrolled in my classroom today, have very different needs as compared to the children who were enrolled 15 years ago. This is not because, back in the day, there were more children in institutions. It is not because my former students really had the same needs and I just don’t remember them very well, or that I just used different terms to categorize children. I don’t even use those terms unless I have to communicate with someone who needs big words to feel important. It is not because our busting- at- the- seams, school launched an advertising campaign so we could stretch our budget just a little bit more. It is most certainly not because the hard working families of these beautiful children are just following a popular new trend in in parenting.

    I will agree that , over the years, the language that has been used to describe behaviors or skills has changed. More contemporary, politically correct labels have been created. However, those of us who have actually been working with children in a public classroom did not participate in that project. We don’t have time to publish, do research, attend committee luncheons, or even go the bathroom. We teach. We observe. We take data. We spend more time with the children in our classrooms than their parents do. We don’t need to debate statistics. We know. We are not concerned about what the popular public trend is. We live it.

    So here is a fact: We have seen a dramatic increase in children being referred to us who demonstrate significant challenges in sensory processing, motor planning and communication. These children have striking and dramatic differences in the way that they play and interact with people in their environment. Their neurological and biological systems are so overwhelmed that many resort to engaging in repetitive behaviors and routines in order to protect themselves from the constant bombardment of language and sensations that they can not interpret. If they had been here 20 years ago I would remember.

    On the other hand, many of these children demonstrate academic skills that are far more advanced than their classmates who do not flap their hands, and are able to look adults in the eye. So statistically these children could help to create a new “norm curve” for academics. The possible result could be that my “typically developing” child could then be statistically, delayed or even worse…..atypical.

    Each child is an individual. Knowing how many children exist in the population, that exhibit similar behavior patterns to the individual, is as useful to me as knowing how many children used a binky or picked their nose. It is not about seeing children as a percentage of the group. It is not about identifying everything that is different or lacking and changing it. It is about finding a way to see the world through a child’s eyes. It is about understanding that the “norm” is not necessarily better, and different is not a disease. Maybe we need to just understand.

    I do not work with statistics.
    I do not work with diagnoses.
    I do not call my students Asperger’s
    or ASD, Classic or rock n roll Autism.

    They are children
    They have names

  • Kate Mia

    http://www.nimh.nih.gov/about/director/2012/autism-prevalence-more-affected-or-more-detected.shtml#1

    “One study in South Korea found a significantly higher rate of autism, but it used a different methodology and different study population. In fact, the part of the Korean study that was most comparable to other studies found an autism rate of .8%—about the same as in other countries.”

    This seems to be an understatement of the significance of the South Korean Study, in that the .75% was identified in a similar high probability demographic that is used in the US for surveillance studies for 8year old children most of whom are identified as receiving educational services in the school system for children with developmental disabilities.

    1.89 % were identified as previously undiagnosed in the general population of children in the school system in South Korea, providing a total of 2.64% of children scanned for ASD’s, ages 7 – 12.

    While the England study scans the entire adult population, it does not scan any demographic below 16 years of age. If a similar study was done in England or the US as was done in South Korea, there is the potential that the rate among children could be close to the rate found in South Korea, at 2.64%.

    The lowest rates recently measured have been in Brazil at .27%, with a much different methodology; different cultural factors potentially also play a role with testing methods that are used across cultures that don’t account for identified cultural differences, per the link below.

    http://sfari.org/news-and-opinion/news/2011/researchers-track-down-autism-rates-across-the-globe

    Until a full population scan is done among all age demographics using similar methodology in one country, it is too soon to speculate on whether or not there is a larger prevalence statistic among children as compared to the adult population as a general population scan of children was not provided in the England study that focused on adults.

    Autism Speaks is currently funding a 3 year study in the US targeted at a scan of the full demographic of the general population across all age groups with similar methodology that may provide more definitive answers as to what the real prevalence of ASD’s are across child and adult demographics, in one country.

    It is interesting from the first link above that the adults in the England study scanned for ASD’s were fairly consistent per prevalence across that entire age demographic at 1 percent. However, there could be newer factors in the environment in the last 15 years that children are more vulnerable to than adults.

    What some of those factors might be are controversial, including the potential that some children cannot adapt as well because of newer cultural influences that adults were not exposed to as young children; particularly those that are providing less opportunity for face to face interactions.

    The 1 in 88 measured in classes for children with developmental disabilities in the US, seen in the similar .75% demographic in the the study from South Korea, may miss a potential measure of the difficulty that children in the larger school population are having problems with adapting to newer cultural influences that were not part of the accessible cultural environment for most children 15 years ago, broadening a spectrum that decades ago would have been a part of what is currently described as the broader autism phenotype.

    Community wide scans for ASD’s done for children in Amish country at a rate of 1 in 271, provide a potential clue. A major element lacking in those communities is progress in technological advances driving culture away from face to face interaction. South Korea is a world leader, per this element of potential correlation.

    https://imfar.confex.com/imfar/2010/webprogram/Paper7336.html

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  • Kelly Arbor

    Reading through the comments, I was quite moved by what speech therapist Marcia had to share, as she writes with deep compassion for children with autism. I too work with children on the autism spectrum, and know that recognizing their humanity is the most important way to begin to help them navigate through the complicated “real world.”

    Willingham raises some interesting points, but she seems unaware of important epidemiological studies that have examined the very question in the headline . A study published in Epidemiology in January 2009 closely examined the question of increased diagnosis and concluded:

    “In summary, the incidence of autism rose 7- to 8-fold in California from the early 1990s through the present. Quantitative analysis of the changes in diagnostic criteria, the inclusion of milder cases, and an earlier age at diagnosis during this period suggests that these factors probably contribute 2.2-, 1.56-, and 1.24-fold increases in autism, respectively, and hence cannot fully explain the magnitude of the rise in autism.” http://www.precaution.org/lib/autism_increases_real.090101.pdf In other words, while autism diagnosis in California increased 700% in less than 20 years, only 56% is due to inclusion of milder cases, and 12% is explainable by changing age at diagnosis. http://www.ncbi.nlm.nih.gov/pubmed/19234401

    The rising numbers of children diagnosed with autism cannot be mostly attributed to changing diagnostic categories or better diagnostic techniques. We know that environment is a large component, and the many co-morbidities (such as seizure disorders and severe gastrointestinal distress) suggest that we should be looking at some systemic disrupters in the environment (so rain in August, and television since the 1950s, can probably be ruled out, and therefore do not merit study).

    I enjoyed hearing from both ‘sides’ in the discussion until it degenerated into bickering. While I note that there is no definitive evidence on acetaminophen, I think we should treat this drug with a high degree of caution, particularly among pregnant women and young children. I am looking forward to a full investigation, which should be able to tell us more about whether this over-the-counter medicine could be a strong contributing environmental co-factor in the rise in autism.

    I think we should put to rest this question of how ASD should best be diagnosed by pushing the medical community to agree upon a quite reliable diagnostic test, a brain scan. While it isn’t 100%, many cases could be easily identified, and the brain scan less expensive than currently used methods. http://newsgroups.derkeiler.com/Archive/Uk/uk.philosophy.humanism/2010-08/msg00039.html

  • Matt B.

    “Toting up” should be “Totaling up”. “Tote” means to carry.

    And in the second-to-last paragraph, was “delivish” supposed to be “devilish”?

  • UnderINK

    Aspergers and PDD-NOS weren’t actually eradicated. They were moved and included in Autism Spectrum Disorder. People with Aspergers will now properly be considered ‘Autistic’ and nobody will tell them that they can’t be autistic because they have Aspergers, not Autism.

  • http://www.facebook.com/andrew.morris.77920 Andrew Morris

    I personally think the disease is a bogus term to cover a variety of conditions and distinct illnesses of other mental disorders, or more likely children who are a little strange and don’t fit some perfect model for child development. People used to call these people eccentric or colorful, now they are autistic. kids who were active used to be called energetic, now they are “ADHD”. we are classifying people as “diseased” just because they act differently than everyone else. thats not a disease its just an unusual personality. We may point to severe cases and say “you can’t say thats not normal” in those cases, it could be a variety of different conditions or disorders, as manifested by the fact that even experts can’t agree on a uniform set of conditions for what constitutes autism, and the “spectrum” of autism is so general and broad as to be able to classify just about anyone with autism. you can be considered autistic if you “have an obsession over things” or a “preocupation with certain topics” “not making friends” “doesn’t like conversation” and “a need for sameness”. Wow, that could describe at least a quarter of the people i know to some degree or another. Not to mention for all the attention it gets, and all the funding that goes into it, there is no sound agreement as to what causes it, no consistent set of environmental or genetic factors.

    We think we need to cure these people of some disease. In all likelyhood many great artists and thinkers, most notably Leonardo da Vinci and Albert Einstein, would have been considered definitely autistic if the diagnosis had existed at the time, what if we had tried to “cure” them? It was not in spite of, but because of the fact that they thought in different ways that they contributed so much to society. I am by no means attacking people diagnosed with autism but defending them, because society seems to think there is something horribly wrong with not being just like everyone else, and that abnormal people are “diseased” and need to be cured.

    • Leslie Aquerón Fair

      Hi Andrew… I love your reply!!!! I agree with you 100% . My uncle didn’t learn to walk untill he was 3 and had a whole bunch of delays and I think he would have been considered autistic if it were today. And he grew up just fine , went to school, studied Mechanical Engineering and graduated with honors. was in the gifted class in high school.. My son currently was diagnosed with Mild Autism and at first I cried and was worried but since I have gotten him Therapy and see him improving I’m not worried. I know he’ll grow up to make something of himself and not let some label define who he is.

    • mplo

      You’re 100% wrong, Andrew! Autism is an innate, biologically-based neurological development disorder that really does impair one’s ability to socialize, communicate, process information, learn things, and, in general, interact with people. With the earliest and proper intervention, however, many autistics can and do overcome these problems and go on to lead normal, independent and productive lives.

  • http://www.facebook.com/profile.php?id=623126385 Linda Tock

    20 years ago children who were severely autistic wouldn’t have been enrolled in mainstream anything; they were institutionalized and marginalized – locked away and not discussed in ‘polite company’.

    • http://www.mhandy1.tumblr.com Mike Handy

      The correlation between older parents and autism are a more direct link.

    • Adrian Thomson

      Coming late to this conversation, I would like to add to your comment. Going back a lot further – centuries we have folk tales of ‘changeling children’ it has been hypothesized that the changeling legend may have developed,
      or at least been used, to explain the peculiarities of children who did
      not develop normally, probably including all sorts of developmental
      delays and abnormalities. In particular, it has been suggested that
      children with autism would be likely to be labeled as changelings or elf-children due to their sometimes strange behavior.

  • BJK

    Oh, come on. If you don’t know what causes autism (and you don’t), you cannot say that the neurotoxins in our food and environment are not involved. And yet you do. What is the real purpose of this article? Misinformation?

    • Prudence Dagg

      That’s exactly it. If you want some really good information from someone who cares about autistic people, look at the Gianelloni Family Blog and the many, many sources she references.

      I am so frustrated with the repeated attempts to “mainstream” autism by insisting that those with autism just want to be “accepted.” This is not the autism I know. No doubt it is misdiagnosed many times, and no doubt it is often mild, but the cases I know–and I lived with one–involve screaming, raging, out-of-control tantrums and violence that do NOT go away on their own by the teens or adulthood. Serious intervention, maybe diet, maybe more, is needed. There is severe impairment, possibly state of being non-verbal, possibly lack of toilet training even.

      Autism is nothing to sneeze at. It is a real, legitimate concern, not a “Get over it; at least he’s not dead” which is what some will throw at anyone concerned or mourning.

      For someone who wants to talk seriously about this (or about vaccines for that matter), my email address is prudence.dagg@gmail.com.

  • http://www.facebook.com/lauren.christie.1232 Lauren Christie

    There are two very good reasons why the number of Autism diagnoses have increased.
    1. We are a hell of a lot better at diagnosing it
    2. The criteria for a diagnosis has widened so much, they’re now saying that technically EVERYONE is on the Autism spectrum, the only difference is HOW Autistic you are.

    For any disease, condition, etc, if you combine those two factors, the number of cases is going to rise. Simple as that.

  • Tonya

    I do not agree with you andrew.. my daughter has aspergers and I can tell you with 4 kids there is a huge difference between the social awkwardness and sensory issue that some kids have.. my 7 year old has social awkwardness and wont even play at recess but i would not label her with aspergers.. my 12 year old has severe different issues though that are not just a different child.. you have to walk a mile in someones shoes to understand this. I have 4 kids, I know now what i would not have known before if I did not have a child with aspergers.

  • karen

    I don’t agree with this article at all, I would suggest that changes to diagnostic criteria will impact prevalence, but that this alone cannot account for the extent of the increase in ASD prevalence. If you disregard what it was called in the past, is this author trying to suggest that there was always 1 in 88 children born with ASD? Ludicrous. Think about the proportion of kids in an average classroom and decide for yourself how many demonstrated tell-tale signs of ASD. Also, keep in mind this 1 in 88 figure only covers ASD and not other sources of illness and disability. That suggests in effect that there were greater than 1 in 88 children with other mental illnesses or intellectual disabilities in previous decades? It simply doesn’t add up. The article fails to consider that diagnostic criteria are created and evolve from cumulative observations by clinicians, they arise from a need to describe and explain a condition. ASD involves profound alterations to characteristically human traits and abilities, it wouldn’t simply go unnoticed. The article also fails to mention the change in prevalence over the time period since the introduction of the Autism diagnosis in 1944, noting only the change from 1 in 110 in 2006 to 1 in 88 now (note that the DSM IV criteria did not change in that time).

  • Prudence Dagg

    Thank you, Kelly. So many are determined to defend traditional medicine at all costs and cast doubt on any possible side effect. Those who live with the fallout often become the recipients of much disparagement as well since they are questioning the system. Posts like this one are a dime a dozen.

  • mplo

    It’s not that there’s an increase in actual cases of autism, but that there’s an increased awareness of autism, which has resulted in many, many more people being diagnosed with autism than before.

  • mplo

    From what I understand, have read, and heard, Autism Speaks is a real POS organization, which doesn’t really speak for autistic people, especially because there are no actual autistics on their board(s).

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