The Claim of the Autism Epidemic
It’s April 15th, halfway through Autism Awareness Month 2008, and you’ve surely heard more than a few mentions about the supposed “autism epidemic” that we’re currently facing, and musings about what is causing the recent rise in the prevalence rate of autism: In the 1960s, autism was considered a rare disorder that occurred in only about 3 in every 10,000 children; now the prevalence rate for autism is, according to the most recent figures released on February 8, 2007, by the Centers for Disease Control and Prevention, 1 in 150 among children in the United States. And in New Jersey, where I live, the prevalence rate is 1 in 94.
A recently published study in the Developmental Medicine and Child Neurology by Dorothy Bishop, et al., found that some adults who received a diagnosis of language disorder during childhood might now have been diagnosed with autism. 38 adults (age 15 to 31) were included in the study, which has rekindled discussion about two hypotheses for the recent rise in the autism rate: Is there truly some epidemic of autism caused by some external, environmental agent? Or, can the change be accounted for by diagnostic substitution, by our being better able and equipped to identify, diagnose, and understand autism?
The answer to this question is not simply academic. To say that there is currently an epidemic of autism means that, until recently, there just were not a lot of autistic people, and that most of the increase in the autism rate is because there are more children with autism. According to this argument, there are a lot more autistic children than there are autistic adults. Prof. Bishop’s recent study disputes such a notion, as she suggests that if today’s diagnostic criteria for autism and autism spectrum disorder were to be applied to many adults who were diagnosed with various language disabilities, mental retardation, and other conditions in the past, the autism rate among today’s adults might well be similar to what it is in today’s children.
The April 10th Economist state that it’s not that there is more autism, but that how we define autism is different:
Fashion is a strange thing, and many fields are susceptible to it—not least, medicine. There has, for example, been a vogue (among commentators, if not among doctors) to ascribe the rising number of cases of autism diagnosed over the past couple of decades to childhood vaccinations against measles, mumps and rubella. That this is fashion rather than reality is suggested by the fact that the explanation proffered in Britain has been that such vaccines provoke an immune response that damages the nervous system, whereas Americans have blamed residual mercury in the same vaccines.
It’s not that autism is some new “trendy” diagnosis to apply to a child who might have been termed “quirky” or a sort of “funny-looking kid” (”FLK”) in times past. The diagnostic criteria have changed, as you can see if you examine the evoluation of the DSM criteria for autism through the years. The Economist rather suggests that what’s in “vogue” is ascribing the “rising number of cases of autism” to “childhood vaccinations”; to some external, environmental agent. Vaccinations have been also linked to ADHD and asthma, to Alzheimers, to juvenile diabetes, et alia. Alternative treatments for autism such as chelation—which some claim has “cured” their child from autism—-are also used to treat Lou Gehrig’s Disease, heart disease, and cancer. People talk about detoxifying autistic children of heavy metals; people talk about detoxification as a cancer treatment and as a treatment for obesity.
Might it be the case that it is (per the Economist) the “fashion”—that it is how we intuit and understand the world, to say there is an “epidemic” of certain childhood conditions, that something in the “environment” can be pointed to, and that removal of certain “toxic” elements can “cure” a child?
These aren’t easy questions to respond to as, in order to accurately answer them, one has to consider the changing definitions and cultural understandings of words like “epidemic” and “normal” and “mental retardation.” One has to keep in mind that it is only fairly recently in the history of the world that we look at disease from a psychiatric and psychological perspective. In a review of Prof. Bishop’s study, blogger Kev at Left Brain/Right Brain referenced Unstrange Minds: Remapping the World of Autism by anthropologist Roy Richard Grinker. Published in January of last year, Unstrange Minds makes a cogent case for how the changing diagnostic criteria for autism and rising understanding have contributed to a sort of “epidemic of discovery” of autism, and hence to the notable increase in diagnoses. From Unstrange Minds:
Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better. (p. 4)
…the newer, higher, more accurate statistics on autism are a sign that we are finally seeing and appreciating a kind of human difference that we once turned away from and that many other cultures still hide away in homes or institutions or denigrate as bizarre. (p. 5)
Prof. Grinker, who is the father of a child with autism, will be speaking at New York University this Thursday, April 17th, 3-5pm, about “What in the World is Autism?: How Culture Shapes an Illness. He’ll be discussing how the shift in how we view and count autism is part of a set of “broader shifts taking place in societies throughout the world”: Autism and neurological and mental health disorders are understood differently in different cultures around the world. (This is topic that I’ve long been sensitive to as I’m a third-generation Chinese American and I still don’t know exactly know how my parents explained about Charlie’s autism to my grandparents, one of whom does not speak English).
As for epidemics: If you want to read about a real epidemic, see today’s New York Times about cholera and how it “shaped the modern metropolis,” and spread throughout Five Points and lower Manhattan—another favorite, and a fashionable, site for us to wander and walk with Charlie.
Tags: april, asd, asperger, autism, chinese, cholera, cure, detox, diabetes, Epidemic, father, five points, Health, new york, obesity, parents, pdd-nos, pscyhology, Psychiatry, unstrange mindsRelated Stories
POSTED IN: Cause, Diagnosis, Environment, Epidemic, Health, Intelligence, Psychiatry, Psychology
60 opinions for The Claim of the Autism Epidemic
Bishops wife
Apr 15, 2008 at 6:58 am
Wonderful!! Excellent post.
Chuck
Apr 15, 2008 at 8:04 am
It is a straw man argument to say that it is either an epidemic or diagnostic shift. It is both. The DSM now casts a much larger, and poorly made, net to “catch” more people in the autistic spectrum. I believe I saw a good comparison on Autism Street. The net being used is catching more big fish at this time and it is catching many many more little fish then it had before the net was re-made.
Regan
Apr 15, 2008 at 8:05 am
I guess at some point I should take a look at Dr. Grinker’s book because I would like to get some broader global perspective. It’s on the to-get list.
History sidebar.
I have been looking at some very old medical texts (1850’s to 1918), and there are too many reports of infantile dementias which document regression, loss of speech, development of tic like behavior, indifference to reprimand or affection and variable mental depressions to make me think that this is a started as a purely 1930’s-1940’s phenomenon. I wonder if they would have counted this as a 1/10,000 phenomenon or ?
Interesting evolution on thoughts of etiology–way back it was teething, or the transition from crawling to walking or perhaps a severe fright or, subsequent to some of the common childhood illnesses of the time. By WWI, the thought was moving to the psychiatric with speculation about mind-states and parenting. The treatment recommendation was pretty much to send the child to an institution or training school.
jypsy
Apr 15, 2008 at 8:23 am
ASA has decided there is indeed an epidemic and Michelle just pointed out these Articles of Membership of this Autism Collaboration that includes :
2. Autism Research Institute
3. Autism Society of America
4. Defeat Autism Now
5. Generation Rescue
6. National Autism Association
7. SafeMinds
8. Schafer Autism Report
9. Talk About Curing Autism
10. Treating Autism
11. Unlocking Autism
and states :
Statements of Agreement
1. There is an autism epidemic;
2. Autism is preventable and treatable;
3. Environmental factors including vaccines are causative agents in autism;
4. Actively support the above three statements in a manner befitting the best
interests of children and families affected by autism.
Chuck
Apr 15, 2008 at 8:29 am
Correction:
It was Andrea’s Buzzing “Trap Bias”, not Autism Street. Too many blogs to keep track of and all I could remember is that it started with an “A” and that doesn’t help much, but I knew it was wrong the moment I saw my post.
Chuck
Apr 15, 2008 at 8:36 am
There is a problem with doing retrospect review of historical document. It is not an “apples-to apples” comparison. Medical and sanitary conditions are not equivalent. Vaccines did not exist. Mercury, cocaine, heroin were considered acceptable medical treatments. Both the medical and psychological institutions were in their infancy with few requirements to become a member.
Laura
Apr 15, 2008 at 8:57 am
I tend to subscribe to the “it’s both” theory too. But because the diagnostic criteria have changed, it’s impossible to measure the increase (if any). In the absence of reliable data, we’re left with hysterical claims of an epidemic and sweeping dismissals.
Joseph
Apr 15, 2008 at 11:11 am
Mental retardation (as an assessment, not a special ed category) is stable. The institutionalized population is declining slowly, contrary to the fears of many. These are just two of the facts that lead me to believe there’s no epidemic of neurological injury.
H6
Apr 15, 2008 at 11:52 am
I think a thought experiment might be in order. People who don’t think there is an autism epidemic should ask themselves if they could handle it if it turned out that there is an autism epidemic or an autism spectrum epidemic that points to an environmental or transmissible factor as the source of the problem. If the very idea is unthinkable or makes one angry to even contemplate, one might see that one is only looking for evidence of one’s own predetermined outcome. The same holds true for those on the other side of the argument.
The Chronic Fatigue Syndrome epidemic ceased to be an epidemic the minute that patients realized that they might be stigmatized as carriers of a CFS virus or other agent. At that moment the truth about CFS ceased to matter and the social status of CFS patients became the primary issue. The community turned on the doctors and journalists who had worked hard to uncover the socially unacceptable facts about CFS.
We’re in a patient-empowerment era in which the patients and their advocates can help decide how to package their medical problems. Science is involved, but so are politics and public relations.
Hopefully, autism spectrum disorders will avoid the same fate as CFS. It’s hard to see how those suffering from autism spectrum disorders will truly be helped by anything other than the whole truth and nothing but the truth.
passionlessDrone
Apr 15, 2008 at 11:52 am
Hello friends -
One wonders how long it will be before instead of applying wishy washy behavioral characteristics, we instead use biological markers to determine if the adults with mental retardation are really the same as the children with autism.
For example, when fatty acid profiles of those with autism, and matched controls of those with a mental retardation diagnosis are compared, there are great differences found in the ratio of fatty acids.
http://www.ncbi.nlm.nih.gov/pubmed/11487301
Now that would be a study I’d like to see; compare plasma concentrations of fatty acids for the MR adults who might match an autism diagnosis today, alongside the children who have an autism diagnosis. Then we could really start to answer the question of if what we are seeing is novel or not.
Take care all!
- pD
RAJ
Apr 15, 2008 at 12:27 pm
There is no autism epidemic. In 1987 the APA published its new diagnostic scheme for autism.. DSM-IV. Kanner’s core defining feature a profund indifference to the existence of people was relegated to one of five symptoms in the category of social difficulties. In 1994 the revised DMS-IV completly removed the highly specific core feature that Kanner defined in 1943 and replaced it with the vague, ambigous and subjective ‘Qualitative impairment in social recriprocity’. ICD-10 has also adopted this new definition as well as all the Gold Standard diagnostic schemes that followed (ADOS, ARI-I, the Autism Qoutient Test, etc).
In 1965 Kanner wrote a paper on the history of autism in the two decades following his 1943 article. He also noted how diagnostic substitution has resulted in the sudden appearance of a multitude of autistic children appearing seemingly out of nowhere. Mentally retarded children with inappropriate behaviors but who did not have an indifference to the existence of other people were given the ever ready rubber stamp of ‘autistic’.
http://neurodiversity.com/library_kanner_1965.html
With the removal of Kanners highly descriptive and specific core defining feature beginning in 1987, it is quite clear that the ever increasing number of isolated symptoms, all of which are shared by many neurological or neuropsychiatric conditions are in fact not specific to Kanner’s definition.
When Romanian orphans who were abandoned at birth and suffered extreme emotional deprivation, neglect and abuse could have enough isolated nonspecific isolated symptoms to qualify for an ASD diagnosis it is clear there is something
completly wrong with this new definition of autism, unless you believe that autism can be caused by maternal neglect.
Joseph
Apr 15, 2008 at 12:38 pm
People who don’t think there is an autism epidemic should ask themselves if they could handle it if it turned out that there is an autism epidemic or an autism spectrum epidemic that points to an environmental or transmissible factor as the source of the problem.
As someone who at one time entertained the possibility of a real increase, I can assure you I’m not going to drop dead if it turns out there actually is one. Facts are facts, and I’m not one to deny what has been demonstrated.
A better test, in my view, is whether you can address facts contrary to your position in a manner that is rational and plausible. The alternative being simply ignoring said inconvenient facts.
xtiluv
Apr 15, 2008 at 12:57 pm
In addition to diagnostic substitution, there is a large population that was not diagnosed with anything. In my family there are at least 3 people who would have been diagnosed with ASD in today’s world. They all have made it through to adulthood with the labels “quirky”, “weird”, “loner”, “geek” etc. All are very capable, intelligent people who have found their place in the world, but they all would have been part of the statistics if they had been born in this era.
I am not saying there is not an increase in autism, because I don’t know the answer to that, but I am saying the it is not possible to compare the statistics accurately. Asperger’s was not even a possible diagnosis in the US until the ’90’s, now it is included under the ASD blanket. How do you measure the increase when the criteria has changed so dramatically?
Chuck
Apr 15, 2008 at 1:26 pm
Should the “quirky”, “weird”, “loner”, “geek” of the past be counted as part of the autism epidemic or not?
xtiluv
Apr 15, 2008 at 2:22 pm
Well, obviously everyone who has ever been called a geek is not autistic, but conversely a large majority of people on the spectrum have been singled out as “nerdy”.
Just to clarify, these labels are not the criteria upon which I rely to see autistic behaviors in my family. There are *many* obvious signs of autism apparent now that we are educated on what to look for. It has been a relief to them to have some explanation for their struggle to fit into social situations. If my son had not been diagnosed with autism, my extended family members may not have ever researched the topic and may never have discovered the likelyhood of their placement on the spectrum. Incidentally, none of them feel the need to get a medical diagnosis, as they are all capable of managing their lives independently.
Kristina Chew, PhD
Apr 15, 2008 at 3:00 pm
Plenty of “autism” in my family and my husband’s too…….
Regan
Apr 15, 2008 at 4:07 pm
There is a problem with doing retrospect review of historical document. It is not an “apples-to apples” comparison. Medical and sanitary conditions are not equivalent. Vaccines did not exist. Mercury, cocaine, heroin were considered acceptable medical treatments. Both the medical and psychological institutions were in their infancy with few requirements to become a member.
—————–
Wasn’t making an apples-to-apples comparison. Just noting something that I found interesting.
Those geezers might not have had sophisticated diagnostic tools but they were almost obsessive observers and measurers. Apparently infantile dementia and developmental idiocy was notable enough to have been described and recorded. To say that all their observations were unreliable would mean that their descriptions of other medical issues would be similarly so, and they are actually quite good.
Chuck
Apr 15, 2008 at 4:15 pm
I cannot identify any “autism” in any family tree of my children. There were medical conditions that limited communications or social exchanges, but that is it.
Kristina Chew, PhD
Apr 15, 2008 at 5:06 pm
I’m not clear that any of my relatives would agree with my thinking of them as on the spectrum even if I pointed out patterns of thinking to them.
Working Dad
Apr 15, 2008 at 7:30 pm
This site generates some of the most thoughtful debate on autism and parenting. I was wondering if the fact that doctors may place a child on the autism spectrum, or lower on that spectrum, to ensure that family gets access to services. I have stumbled across this more than once in reporting, and while it may not be the sole or even a primary force, could it be a possibility.
Joseph
Apr 15, 2008 at 8:47 pm
I was wondering if the fact that doctors may place a child on the autism spectrum, or lower on that spectrum, to ensure that family gets access to services.
I understand this is common in California, where a child who would otherwise have a diagnosis of Asperger’s or PDD-NOS might get a diagnosis of autism in order to qualify for services. In the data you can see how the prevalence of assessed mental retardation has declined considerably in the autistic population served by DDS.
Kristina Chew, PhD
Apr 15, 2008 at 8:52 pm
@Working Dad,
thanks for your kind words!
I have also heard parents here in NJ note that they are seeking an autism diagnosis in order to get more services, vs. a diagnosis of PDD-NOS, Asperger’s, or, too, cerebral palsy.
C. S. Wyatt
Apr 15, 2008 at 10:08 pm
I charted mental retardation versus autism, as well as other OSEP categories, from 1993 through the last reporting cycle I could obtain:
http://www.tameri.com/csw/autism/table_diagrates.html
The percent change in retardation cases went negative as autism rates increased dramatically. This is particularly true in California and Minnesota, though I do not know why. I won’t even hazard a guess — the Grinker text has several theories dealing with education and public services. I simply can’t claim to be certain.
The National Autism Society (UK) suggests more than half of adults living with autism, especially over the age of 35, are undiagnosed. They did a survey of more than 1400 individuals and found that many had other diagnoses until a new assessment was offered.
Jill
Apr 15, 2008 at 10:12 pm
@Joseph - IAN research touched on this a little bit when during their first survey. Many parents said that their child had been diagnosed with autism but were not mentally retarded. I can’t remember the percentages but a vast majority of parents said their child had only autism. IAN was surprised by this so they had another survey in which they asked parents if their child had an IQ less than 70. It then turned out that 50 percent of the children had mental retardation and there were even more children that had not had their IQ tested. I honestly believe that I receive more services from my local MRDD because I was up front and told them that my children have mental retardation as well as autism. I am not ashamed of that word nor that diagnosis. It is a fact that my children have an IQ below 70. Well, my younger son now has a non verbal IQ near 80 after one year of intensive ABA treatment in which his IQ increased 16 points.
Chuck
Apr 15, 2008 at 11:27 pm
“Mental retardation (as an assessment, not a special ed category) is stable.”
“In the data you can see how the prevalence of assessed mental retardation has declined considerably in the autistic population served by DDS.”
How can an assessed diagnosis be both stable and declining?
If MR is now being diagnosed as ASD in CA, was the state incompetent in making the MR diagnosis, the ASD diagnosis, or a combination of both?
Regan
Apr 16, 2008 at 12:04 am
See charted data for Oregon and Minnesota and explanation of evaluation criteria.
How “Educational Assessments”
Skew Autism Prevalence Rates
James R. Laidler, M.D.
Data displayed 1993-2002
http://www.autism-watch.org/general/edu.shtml
Kristina Chew, PhD
Apr 16, 2008 at 12:56 am
And educational criteria are not the same as those made in a clinical setting—-as some of the contents suggests, parents can seek a certain diagnosis for a pragmatic end (getting more services).
C. S. Wyatt
Apr 16, 2008 at 1:32 am
The curious change in IDEA numbers, which some epidemiological meta-analyses have mistakenly used, is that MR peaked in 1999 at 600K cases and is now at approximately 510K based on trends (the last figure was 533K two years ago).
That implies a drop of 90K students, while the U.S. population continued to grow. That’s not a minor change.
At the same time, autism/ASD reports on OSEP forms increased by nearly 100K students (give or take, based on the different sources used). Not every “lost” MR case became autism.
What is very, very curious was a sudden spike we saw in the 12+ year bracket. Now, I don’t imagine “autism” suddenly appeared in middle school. Instead, something else happened at the category level. Grinker has pointed to changes in various IDEA/OSEP forms, and I have posted copies of the category changes that I found, as well.
The main link to definitional issues I have addressed for the Univ. of Minnesota:
http://www.tameri.com/csw/autism
Numbers are useless without standards for counting… and we don’t have many standards in educational reporting. (I wish I were overstating the problem.) The Univ. of MN now requires a new assessment for students with ASDs because too many were being categorized at the public schools without formal assessment.
I had a student tell me, “Well, my school nurse said I have an autism thing, so I must.”
The university had their own psychiatric eval of me when I presented the HFA diagnoses from a neuropsychologist and my neurologist. It’s a real mess deciding who to count… a mess.
Kristina Chew, PhD
Apr 16, 2008 at 1:41 am
Thank you for the graphs—-they are very helpful.
At what point in the process might a student at the Univ of MN be assessed for ASDs: When applying? When seeking accommodations through disability support services?
(We do not have any such assessments at the college where I work now.)
Synesthesia
Apr 16, 2008 at 1:52 am
If there are that many cases of autism, does that mean there are more services to help autistic children and adults?
I feel like that gets overlooked.
I’ve learned that 1 in 50 children have been traumatised. That is a horrible epidemic, but I don’t think it gets the same attention as autism does.
C. S. Wyatt
Apr 16, 2008 at 3:01 am
The UofM only asks for an assessment when a student seeks services. The Univ Counseling Services only supports / confirms an external diagnosis and can help craft disclosure letters for students to present to faculty.
The system is flawed and ineffective. My experiences have been lousy, as letters and other communications get backlogged. 55k students will do that to a university. We are much too large to deal well with special needs.
passionlessDrone
Apr 16, 2008 at 8:40 am
Hello friends -
Maybe someone can help me with something that has me confused. It seems as if a great number of children now being included in the spectrum that ‘wouldn’t have been in the past’, are on the higher functioning end; i.e., PDD and/or Aspergers.
Yet, we also seem to have an apparent decrease in mental retardation; I can see a diagnostic substitution error for flat out autism and MR, but PDD?
There seem to be two contradictory arguments being made:
1) Most of the children diagnosed now are very subtlely affected; and would not have been diagnosed twenty years ago.
2) At the same time as increased autism diagnosis, MR diagnosis have decreased, thus, diagnostic substitution explains the difference.
Doesn’t this have an foundation of confusing a child with PDD / Aspergers as one with mental retardation? This, on the face of it, seems to be patently absurd.
No doubt, the classification system is messy and until some way can be figured out to clean it up (biomarkers!), everything will be little short of WAGs.
Take care everyone!
- pD
Cliff
Apr 16, 2008 at 10:47 am
That would assume the two arguments were mutually exclusive, which they aren’t.
Cliff
Cliff
Apr 16, 2008 at 10:49 am
Let me clarify that, actually. That would assume that the arguments are basically working on the same individuals, which isn’t necessarily the case. The two effects can work on different individuals and both have the effect of creating an epidemic. You don’t need to make room to explain why Asperger’s individuals were considered retarded (because most likely they weren’t).
Cliff
Joseph
Apr 16, 2008 at 11:25 am
Doesn’t this have an foundation of confusing a child with PDD / Aspergers as one with mental retardation? This, on the face of it, seems to be patently absurd.
Clearly, there are two things that are going on: (1) Increasing recognition of autism in the population with mental retardation; (2) Increasing recognition of autism in the population without mental retardation.
That seems very simple in retrospect, doesn’t it?
To be clear, the prevalence of mental retardation is not declining. It’s stable. It is declining as a preferred diagnosis or as a category, most notably in IDEA.
Joseph
Apr 16, 2008 at 11:38 am
How can an assessed diagnosis be both stable and declining?
This seems to be a point of confusion.
If you give people an IQ test, I have reason to believe you would see that the prevalence of those with an IQ below 70 is stable. That’s what I call “assessed mental retardation.”
But if you look at the “mental retardation” category in IDEA, you will see that, relative to the population of children, it is declining. Clearly, children might be in a category other than “mental retardation” in IDEA, and still have mental retardation.
In California DDS reports, to contrast, MR is reported as an assessment. For autistic children and all other children, they will tell you how many have mental retardation and how many do not. (They also have an “unknown” category). As you might expect, MR in DDS reports, unlike IDEA, is stable.
H6
Apr 16, 2008 at 11:46 am
If you agree that HHV-6 is an issue in autism, then you could easily conclude that the word “epidemic” is appropriate in the sense that autism is part of an epidemic of medical problems related to HHV-6.
HHV-6 has been thought to be a secondary problem in several neurological and immunological disorders, but evidence is mounting that it is a more important key to their aetiology and treatment. Autism may turn out to be one of them. HHV-6 activations seem to have come out of the woodwork at the same time as AIDS, CFS and the hypothetical increase in autism spectrum disorders.
The three debates or investigations needed here are:
1) Is there really what could be called an epidemic of activated HHV-6?
2) Is autism part of an epidemic of activated HHV-6?
3) Can the lives of autistic people be improved by therapies directed at activated HHV-6?
HHV-6 was dismissed after it was discovered in 1986 in AIDS and CFS patients as unimportant.
But look at this new overview of its role in AIDS:
http://www.hhv-6foundation.org/hhv6_prog_AIDS.htm
And a more general overview:
http://www.hhv-6foundation.org/overview.html
HHV-6’s role in autism deserves at least a little due diligence.
Chuck
Apr 16, 2008 at 1:45 pm
If you give people an IQ test, I have reason to believe you would see that the prevalence of those with an IQ below 70 is stable. That’s what I call “assessed mental retardation.”
There are multiple organizations for medical and psychologically defined disorders that have legitimate reason to questions any organizations ability to objectively measure IQ.
Emily
Apr 16, 2008 at 2:02 pm
My son, who is diagnosed with Asperger Syndrome, scores in the mentally retarded range on some parts of the scale and in the upper percentiles in others. He has one of the largest spreads in his scores (60 points) that the school psychologist has ever seen. Given his behaviors in the classroom and common presentation of being in “la-la” land and not keeping up, my husband and I both feel that he would have been labeled as mentally retarded or “slow” 20 or 30 years ago and placed in a special ed classroom, our personal knowledge of his abilities notwithstanding.
xtiluv
Apr 16, 2008 at 2:13 pm
To add to the conversation, when my cousin was in kindergarten and 1st grade, both of his teachers suggested to his parents that he was MR, based on his inattentive attitude in class and lack of ability to look at the teacher and join class activities. We all knew that he was very intelligent, so none of us seriously considered this possibility, but they were pushing for a diagnosis.
My cousin graduated high school as valedictorian, was a national debate champion in college and is now a lawyer. Education became his special interest…after a stint with superheroes, wrestling and another with football. He is definitely on the spectrum (Asperger’s) and of high intellect, but still there were questions about mental retardation. Point being, these questions about diagnostic substitutions and high functioning spectrum diagnoses are not mutually exclusive. An extremely bright person can still be considered of low IQ because of a lack of interest, or an inability to perform well on a test design for NT’s with good language skills.
Joseph
Apr 16, 2008 at 2:14 pm
There are multiple organizations for medical and psychologically defined disorders that have legitimate reason to questions any organizations ability to objectively measure IQ.
The validity of IQ tests is not the point, of course.
Emily
Apr 16, 2008 at 2:49 pm
xtiluv, thanks for telling that story.
C. S. Wyatt
Apr 16, 2008 at 5:22 pm
I’m another of those “slow” individuals whose parents were told I would be mentally retarded. Clearly, someone was wrong. It took a couple of years for a school district to recognize a brain is not reflected by the body in which it resides.
Now, 40 years later, I’ve co-owned several small businesses and am completing my Ph.D.
I have met a lot of people with similar experiences. I wobble, use a cane sometimes, and am not going to juggle. Teachers used to care way too much about such things. These same teachers thought being left-handed was a bad thing.
Forms filled out by schools, which too many people cite, are not accurate counts / assessments of any condition. They never have been. Plus, the more we learn about human beings, the more “conditions” we define that were previously lumped together. Better trained teachers, nurses, and school psychologists help, too.
jypsy
Apr 17, 2008 at 7:08 am
hmmm. I had commented here, would have been about the 4th comment. Caught in a spam trap? (it had 2 links in it…)
Kristina Chew, PhD
Apr 17, 2008 at 9:21 am
Found one—-sorry about that! Did you just make them—
C. S. Wyatt
Apr 17, 2008 at 4:31 pm
@jypsy et al…
An advocacy group using the term “epidemic” does not make something so. In medical terms, an epidemic must spread quickly and be communicable. Colloquial usage as a synonym for “widespread” would require a rate higher than 1:100 (1%) which no major epidemiological study has cited.
In historical terms, an epidemic runs at greater than 10% of a localized population and appears/disappears within a defined period of time, usually under 24 months. “Infectious” is a key part of the medical definition. A pandemic is beyond a single region / country.
The misuse of the term for rhetorical purposes is like declaring “war” on everything from poverty to illiteracy. Epidemic is a medical term — you can’t have an epidemic that is not transmittable to the uninfected.
Rhetorical flourishes only serve to confuse people when researchers insist on medical / research terms and the public embraces the hyperbole.
Kev2
Apr 17, 2008 at 4:54 pm
This isn’t going to make me any friends here (I have a hard enough time with that as it is), but should “cured” have quotation marks around it?
Chuck
Apr 17, 2008 at 5:04 pm
Many words have both medical and non-medical definitions. The use of words like disease, sickness, cancer, epidemic for non-medical issues do not make the statements rhetorical. Many words have more than one meaning.
C. S. Wyatt
Apr 17, 2008 at 6:17 pm
“Epidemic” is a scary word. Grinker has argued that advocates chose the word, intentionally, to use during political hearings. Once used in House hearings, the word took on a new force in autism discussions. I have transcripts of several congressional hearings… “Epidemic” was used with abandon for effect.
H6
Apr 17, 2008 at 6:32 pm
Maybe some people don’t use “epidemic” for political effect, but actually think there is an epidemic.
Regan
Apr 17, 2008 at 6:47 pm
I think that this was the first reference,
Rimland B. Is there an autism epidemic? ARRI 9:3, 1995.
So the question has been around awhile, and above editorial was the same question of better counts or more kids?
Rick Rollins is probably the owner of autism “tsunami”.
Autism is not alone in the use of epidemic–epidemic of Parkinson’s is one that springs to mind.
The count is still a mess for all the reasons that were already stated.
Regan
Apr 17, 2008 at 7:03 pm
The IQ test thing is tricky because I have actually been in the position of advising people to not have their child get a reported IQ score on record if such is optional. Assessment of skills,yes., but unless the situation is exceptional to be cautious of IQ testing.
The reason being, at least here, for services, once you get the MR attached to “autism”, you can forget asking for intensive services, or at least it becomes infinitely more difficult. Ditto for insurance, because MR is considered a permanent global state.
The other difficulty is that splintered profile and the dependency on language for many assessments, which if language-based assessments are used, might account for the leaps in IQ numbers after particular interventions.
So if the person smarter, or is the instrument now as better fit for how the measurement is taken?
I think the papers by Edelson, and Dawson, Gernsbacher and Mottron talk about some of the difficulties in this area.
Synesthesia
Apr 17, 2008 at 7:04 pm
Calling it an epidemic bothers me deeply
Jill
Apr 17, 2008 at 7:55 pm
@Regan - Good point in that people do assume that a low IQ level means that it will remain so if diagnosed with mental retardation. I mentioned to a supervisor that my youngest son had a double digit IQ increase in one year and she was very skeptical and said that a person’s IQ does not increase. This is the mindset of many people which is probably why it is so difficult to get funding for early intervention.
Kristina Chew, PhD
Apr 17, 2008 at 10:20 pm
Epidemic has been used for:
obesity
diabetes
ADHD
heart disease
eating disorders
Autism and Cancer
Apr 23, 2008 at 12:17 pm
[…] of 2007 by the Center for Disease Control and Prevention. To illustrate what some term an “autism epidemic” (including three presidential candidates), people regularly compare the prevalence rate of […]
Last Week’s Top Posts
Apr 26, 2008 at 8:22 pm
[…] and Cancer To illustrate what some term an “autism epidemic” (including three presidential candidates), people regularly compare the prevalence rate of […]
Susan M. Bersee
May 11, 2008 at 1:46 am
We have two biological sons with Autism. One has Aspergers the other PDDNOS which basically means he has all the symptoms of Autism.
We have video of him as a ” normal ” toddler then he stopped talking and started spinning and flapping his arms. He is now doing well as an 8 yr old but functions emotionally as a 4 to 5 yr old. He loves art and music and can name more famous artists and composers than I ever had a clue existed. Khandinsky? had no clue lol.
Our son with Aspergers is very bright but chews his clothing and is still very delayed emotionally. I can’t figure out why they both have Autism or how it came to be, but our goal is to teach them to live with their Autism and have a good life. Blame for a disability never has a good end. It just causes anger and upset. We love our kids and want them to live thier lives to the fullest.
I don’t want to upset anyone but our other two children with epilepsy, that is not curable either, they take their meds and learn to live with it and have done very well. One is married the other is a volunteer firefighter.
Our children will achieve and grow as we allow them to do so, disabilities or not.
Thank you for this forum.
Kristina Chew, PhD
May 11, 2008 at 1:58 am
@Susan,
yes—-wrote wrote “we love our kids and want them to live thier lives to the fullest.”
Thank you so much—it’s lovely to hear about your family. Very best wishes on Mother’s Day!
Now Where Was It You Heard About the Autism Epidemic?
Jun 29, 2008 at 1:08 am
[…] of an epidemic of autism are just that, claims and assumptions based on what people feel and perceive. But where did you […]
Have an opinion? Leave a comment: