Denialist. One who denies. It is a phrase that gets thrown around a lot on the internet. You don’t agree with me? Well, you must be a denialist. The term has risen in prominence lately with Michael Specter’s recent book, “Denialism, How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives” One of his prime examples is the anti-vaccine movement, so this book has been discussed on a number of autism blogs (including this one).
Denial–here are definitions from dictionary.com
1. an assertion that something said, believed, alleged, etc., is false: Despite his denials, we knew he had taken the purse. The politician issued a denial of his opponent’s charges.
2. refusal to believe a doctrine, theory, or the like.
3. disbelief in the existence or reality of a thing.
4. the refusal to satisfy a claim, request, desire, etc., or the refusal of a person making it.
5. refusal to recognize or acknowledge; a disowning or disavowal: the traitor’s denial of his country; Peter’s denial of Christ.
6. Law. refusal to acknowledge the validity of a claim, suit, or the like; a plea that denies allegations of fact in an adversary’s plea: Although she sued for libel, he entered a general denial.
7. sacrifice of one’s own wants or needs; self-denial.
8. Psychology. an unconscious defense mechanism used to reduce anxiety by denying thoughts, feelings, or facts that are consciously intolerable.
Many people “deny” that vaccines work. Many people “deny” that the diseases vaccines prevent are dangerous. People who do so are, in my book, denialists.
Case in point, a recent blog post by Kim Stagliano of the Age of Autism blog: An Autism Mom Goes Back to Christmas 1962. In it, she presents a doll from 1962. A doll with a changeable face, and one face shows the baby doll with measles. The message of the blog post is clear: measles wasn’t so bad. Ms. Stagliano writes:
Yes, in 1962, measles were a common childhood illness. And little girls played with dollies that had the measles, and made them all better. So did doctors for children who got the measles.
Well, yes. Most of the time children got better.
Let’s check what people wrote about measles in the early 1960’s, shall we? From Time Magazine, 1961 (with emphasis added by me).
When famed Harvard Nobel Laureate John Franklin Enders announced at a Manhattan meeting three years ago that he had isolated measles virus, his fellow virologists stood up and cheered. It would not be long, they hoped, before a vaccine could be developed to wipe out a disease that sends one child in 4,000 to institutions for the feebleminded. But the first live virus vaccine developed by Enders left much to be desired; four of five children got severe fevers, roughly half developed a rash. Last week, after much toil by Enders and others, a group of Pennsylvania physicians and virologists announced that they had successfully tested a measles vaccination technique. Children are first inoculated with Enders vaccine, which gives nearly 100% protection. Then, almost immediately, they are injected in the same arm with gamma globulin, which holds undesirable side effects, such as fever and rash, to a minimum. The Public Health Service still must approve the new measles technique, establish manufacturing standards. If all goes well, a vaccine will be on the market next year, just as measles heads toward its next cyclical peak.
Yes, virologists cheered, 1 in 4,000 children were sent to institutions.
Life Magazine, in 1963, discussed the new vaccines for Measles.
Though often joked about, this commonplace disease kills about 400 Americans each year–twice the number that polio now kills. Several thousand cases each year develop encephalitis, which can damage the brain.
The Age of Autism, where Ms. Stagliano blogs, was quite upset by Mr. Specter and his book for singling out anti-vaccine groups as denialists. My suggestion: if you don’t want to be labeled denialist, don’t be a denialist.
Left Brain Right Brain 
Obviously, many refer to me as a denialist since I do not subscribe to the idea that there is good evidence for an autism epidemic and I don’t subscribe to the idea that there is good evidence that vaccines cause a significant amount of autism cases.
I think, at the back of Stagliano’s post, is a valid point about changing sensitivities. I was just thinking of another example: I’ve seen an old Disney short where Donald Duck fires a tommy gun in a crowded theater. Rather more difficult to romanticize now…
How can you be so disconnected from the reality of your child’s life to constantly blog about vaccines is beyond me Sullivan. At a certain point, there are more important issues than this to the well being of your child’s life than battling back and forth on the vaccine issue. I can understand if this is all new to someone and they might feel energized by the issue because its easily accessible, its sort of a no brainer. But after a period of time, as you grow and advocate for your child, realize the issues that truly do effect your child, vaccines become the propriety of those whose job is to advocate for their acceptance, primarily the AAP. I would say the same for the Age of Autism folks.
I simply don’t understand the continued focus of this issue for you. You’ve been around for a couple of years now online. Aren’t there bigger issues to advocate for that will actually help your child? Your never going to convince the AoA folks and they are never going to convince you.
Tell me, how does this advance the needs of your child? Perhaps I’m missing something such as you blog about other issues somewhere else? Perhaps?
Wait, Kim’s evidence that measles was not that bad is a doll?
Back on Science Based Medicine there was someone who was using the cyclic nature of measles, plus the fact that fewer deaths occurred as medical care improved through the twentieth century. He disliked that the anti-anti-vax folks only used the ten years before and after the vaccine to show vaccine efficacy. So I found some census data, which showed the falling rate of incidence starting in the 1960s (see link above).
Of course, they all want to concentrate on deaths, but do not realize that for every child who dies, at least one is permanently disabled. A quick look on PubMed for “mental retardation measles” brings up 90 papers, the first being: Impact of Specific Medical Interventions on Reducing the Prevalence of Mental Retardation, which says for measles :
Which pretty much repeats the Time quote, especially the “approximately 15% die and 25% of survivors develop complications” bit (this did not let me do superscripts, the numbers after sentences are references in the paper).
Being more politically correct, I also plugged in “disability measles” into PubMed and got 90 hits, some which probably overlap the previous search, though many are different. At a glance there are several papers on Subacute sclerosing panencephalitis.
KA:
Nice of you to be so concerned about Sullivan’s child. But many of us find this an important issue because we have had children injured by actual diseases, and have children with other medical issues that require herd immunity.
Now, do you ask the “Age of Autism” blog why they harp so much on vaccines? Obviously it is important to them, and recently much more so than services for disabled children (by the way, I have a child who is disabled, has been injured by a disease and has had to rely on herd immunity).
Actually Sullivan.. how many children that have had the vaccine are sent to institutions for the “feeble minded”.
That is a question they still haven’t answered. How many have had adverse reactions?? How many Hannah Polings are there out there??
Mine have had autism since birth…. but my eldest had “adverse reactions” to both MMR vaccines… why is this “ok”?? Why is it deamed “ok” to give children adult doses of the H1N1 vaccine and simply send them on their way – after a trip to the hospital – with some tylenol for their fevers.
Nobody is denying their place in history…. what people are questioning is their long term effects on people and their children.
It isn’t “denial” by parents.. it’s “denial” by the scientists that maybe they aren’t perfect.
“Now, do you ask the “Age of Autism” blog why they harp so much on vaccines? Obviously it is important to them, and recently much more so than services for disabled children ”
I sure do.
I’m sorry that your child was harmed by a disease. You should lobby the AAP to be more aggressive in its advocacy.
KA,
Your statement comes across as a thinly veiled attack, rather than true concern. Since you quite obviously have no idea of what I do to advocate for my child, your opening sentence is clearly intended to either (a) annoy me or (b) inform others of your apparent opinion that I am not to be listened to.
It is unfortunate that you took such a tactic, since you do bring up some valid questions and demonstrate some common misconceptions as well.
You make two assumptions about my blogging and advocacy.
First, you assume, incorrectly, that my blogging is about advocacy. Mostly I write about what interests me.
However, I do advocate in some ways on this blog. I advocate for a more research into a better life for autistic adults. That is, in my mind, enlightened self interest. It is also a subject that is actively avoided by groups that promote the “epidemic”.
I advocate for people to take part in the research process by commenting to the IACC.
While I do not discuss vaccines as part of my advocacy, the question of whether keeping the vaccines-cause-autism crowd from taking over all of autism advocacy advances my child’s interests is a good one. I would answer that, yes it is a valid thing to try.
I do not think I can convince the people at AoA that I am correct. I am not attempting to do so. What ever led you to believe that?
As to them convincing me–yes, if they have some data, they can convince me. If I thought I had all the answers, I wouldn’t read opposing views and I likely wouldn’t blog.
In your comment, you make a statement that assumes I do not advocate for my child. “as you grow and advocate for your child”. I would ask, if you discount everything I do on this blog as not advocating for my child (again, I disagree with that stance), what evidence do you have that I do not advocate for my child elsewhere? The world is not made up only of what you see.
In my state we had 3 children with autism in our school system in 1990. This year we have 12,356. Are the folks who say autism hasn’t increased denialists (disbelief in the existence or reality of a thing)?
KA,
another statement–
Knowing what I know about vaccines, the danger of vaccine preventable disease and the dangers posed by groups like the Age of Autism to public health, am I supposed to remain silent?
How is autism advocacy furthered if autism advocacy is linked in the public’s mind to outbreaks of disease (should that come to pass)?
Amy, you make an unsupported assertion. My guess is that you are basing your belief on IDEA data. Can you state absolutely that there were no unidentified autistics in 1990?
I’d be suprised if the 12,356 is an accurate number. As in, I expect that most states (if not all) are still dramatically under counting the number of autistics.
One of the problems with claiming an “epidemic” is that people deny the existence of autistics who are not already identified. Largely, this is the older children and mostly this is adults.
Can I say that the autism rate is constant with time? No, and I don’t say that. However, can I say that IDEA data are not valid for monitoring the real number of autistics? Absolutely.
Sullivan, I’m just asking a question I don’t understand, as one Dad to another. I don’t mean to attack you. I’d ask the same question if we were at a backyard bb-q and sharing a beer. That’s how I’m asking, just Dad to Dad. Like I wrote, I don’t of course know what else you do, this is all I know which I’m sure is a tiny sliver of your life.
You owe me no explanations or justifications. I just had a thought I wanted to ask you, sort of a gut response. I don’t want to derail your thread here.
KA,
sorry that my response was harsh.
Actually your questions are the most interesting part of this thread. I’ve often considered doing a post on why I write what I do.
I write what I want to write about, not what I think I should write about. I write to work through ideas, mostly. When I read something like the ridiculous post by Kim Stagliano, I write to help me get past the nonsense. Yes, what I should do is just avoid what she writes as the noise to signal ratio is extremely high.
Good posts, the sort of things I want to write about, are rare and time consuming. Finding a way to write about Sky Walker, for example, was difficult. I didn’t want to get him and his mother caught in the crossfire of the blogs. At the same time, I had to write something. Similar story with a recent lost child incident. How to address the issue? But, in the end, if you asked me for two posts I’ve recently done that show why I blog, those would be the examples.
Disability advocacy depends on the goodwill of the public at large. If we waste that (or allow others to waste it) by allowing or encouraging the outbreaks of vaccine preventable diseases, where will we be? What if 10 years from now the autism communities are seen as the people who pushed a public relations campaign that resulted in outbreaks of disease? Will research funding drop? Much more, will people fund good supports for adults?
I am also infuriated by the way the so-called autism advocacy groups can actively deny the existence of adult autistics. I firmly believe that the needs of autistics are often distinct from other disability groups. As such, I believe that there are a large number of adults with poor, little or no appropriate support. Since the same groups who push this form of denialism are typically the vaccines-cause-autism groups, I tend to keep tabs on them.
I also hate bad science.
There is some of what drives what I write.
Sullivan, I would think identifying a person with autism would be the easiest job in the world. Counting them would be even easier. How many highly paid autism experts does it take to screw in a lightbulb? I guess that depends on how much money they can continue screwing the taxpayers out of.
Wow. Just plain wow. What a statement.
Seriously, take the time to look at the data for yourself, or please consider the fact that you don’t understand what you are talking about. Seriously.
By your logic, all autistics should be identified by kindergarden teachers, passersby, friends, neightbors…it is obvious, isn’t it?
Are all autistics identified by age 3? By Kindergarden? By age 8? The answer to all three questions is a clear and resounding “no”. This is according to the very IDEA data you use to push an “epidemic”. I guess all those teachers were just screwing over the taxpayers? I guess the parents were just fools? That’s the part of this that is so insulting. “It’s so easy”. Tell that to the parents of the kids who are diagnosed at age 8 or later. Go ahead.
A recent UK study found that there are very many adults with autism who were never identified. Ever.
You seriously have shown a high level of ignorance in your comment.
“Sullivan, I would think identifying a person with autism would be the easiest job in the world. Counting them would be even easier. How many highly paid autism experts does it take to screw in a lightbulb? I guess that depends on how much money they can continue screwing the taxpayers out of.”
OK let’s take a walk back to the ghost of diagnostics past. 1990? Change your thinking about who should be counted because who should be counted was different in 1990:
http://autismaspergerssyndrome.suite101.com/article.cfm/history_of_autism_in_the_dsm
Next, Let’s look at a little piece of legislation passed in 1990 and effective in 1992 that changed WHY a parent might want a child counted:
http://en.wikipedia.org/wiki/Americans_with_Disabilities_Act
Lastly, we can finally get to the other reason that so many ‘denialists’ love to quote as what people say is the reason for the increase of autism…better diagnosis (which of course, IS another reason why there is an increase, but only one of several).
The question is not how many autism experts does it take, but how many federal, state and local agencies does it take to count an autism population? Depends on how they are incentivized to do so…
IDEA was also finalized and enacted Oct 30,1990:
http://www.help4adhd.org/en/education/rights/idea
Why think rationally about an increase in autism rates when you can easily ignore facts because they don’t fit into the catastrophic vaccine causation conspiracy theory?
KA, thank you for your concern trolling. My son is older so he became ill from a disease before the vaccine was available. He also was getting services without an autism label, just like many of the kids I got to know over the years.
What I prefer is to stick with the real data and evidence, something that I don’t think you brought to this discussion.
A message for Amy
In Cumbria, the county where I teach in the UK, when I began teaching in 1983 we had no autistic children, or rather no children with an autism diagnosis. A few years later the local authority launched an enquiry into autism and found elderly parents caring for their adult autistic children who had never been diagnosed and were completely unknown to the system.
At the same time it was obvious to me and the staff in the special school where I still teach that a number of our pupils were autistic. But we were not allowed to say so. Autism was a medical condition. It could only be diagnosed by a senior medical doctor, a consultant paediatrician or child psychiatrist.
But here is the rub. In 1997 we could not find a specialist in our county who had enough confidence in their own expertise to diagnose our son. He had been identified with special needs aged 3 but was still without a formal diagnosis aged 12. We had to go to the National Autistic Society’s specialist diagnostic unit on the other side of the country to get a diagnosis.
Problems with diagnosis are a well documented fact of life for parents of autistic children. See Pat Howlin’s study from 1997 for one example. Things have improved. More of us are getting a diagnosis and we do not have to wait so long.
If you are relying on administratve data for your assertion about numbers in your state it would help to know which state you are talking about and the source for your figures. Many states use criteria that do not even begin to approach the rigour and precision of DSM-IV. And even DSM-IV has its critics. As Sullivan has pointed out, this is not about conflicting opinions but about gathering reliable data and judging our opinions according to how closely they are supported by or conflict with the data.
Sullivan, I would think identifying a person with autism would be the easiest job in the world. Counting them would be even easier.
Amy
I don’t know how many autistics share this experience, but I find it very easy not to be noticed. I can get within 6 inches of someone, with no attempt at stealth, without him/her knowing I’m there. I think it has something to do with the fact that I used to avoid people just to escape bullies. Wouldn’t abilities like mine interfere with an accurate census?
The reason why so many autism parents think the increase is real, is mainly because 1) they didn’t have children before so they weren’t really concerned with/aware of the autism issue; 2) once you have an autistic child you learn about the symptoms and then it becomes easier to identify autism in other children you see in the playgrounds or schools or at your friends’ homes.
There are studies being done to explain the increase (if it accounts for better diagnoses only or other factors). Meanwhile I’m waiting to see what the real data reveals before I go around freaking me and other people out about a possible autism “epidemic”.
Sullivan, I would think identifying a person with autism would be the easiest job in the world.
Sullivan had already pointed out how asinine that statement is, but let me give you another persepctive as someone who is on techicolor spindizzy that is the autism spectrum.
I was born in 86 and was diagnosed with ADHD at age 4. I had all the symptoms of Aspergers and I remember when I was with my therapist at age 4-5 how completely oblivious to my repetative interest with the fishing game. I couldn’t tell right from left, I had no concept with sequencing I couldn’t comprehend time (I was four so that was reasonable but time didn’t latch on until I was seven I think) Somehow I had impulsive mind and ran on a motor as the DSM-IV describes ADHD-ers not someone that had some delays.
If it was so easy to catch someone with autism? Why was I misdiagnosed?
Oh. That’s right. I could talk and I was a girl. Duh.
I won’t jump on the “dump on Amy” bandwagon because I’m different. Literally.
I don’t agree with her but I just don’t see the need to add redundancy to the discussion.
Epidemic? Vaccines cause autism? I do not know. I do care because I have Asperger’s and my oldest son has Asperger’s and my youngest son has PDD/NOS. I was diagnosed finally in my early 20s. Or mid-20s. Somewhere in there. Time and memory do not always come together like how I would want them.
It wasn’t easy to count me because once I finally started talking, you couldn’t shut me up. I had hyperlexia, so I was super-bright (not savant) and I’m not a visual person. I didn’t fit the preconceived notion of “autistic” that teachers, parents, administrators had of it at the time. So no one suggested to mom and dad that I go to a neuropsychologist for help. Instead, they (my parents) helped me to the best of their own ability which based on my success in life, I’d have to say was pretty damn good.
With awareness, comes better diagnosing… that just makes sense that the increase in autism can be explained SOME by increased diagnostics.
Then, of course, comes the “me too” factor. It’s akin to the whole hypochondria, Munchhausen’s, Munchhausen by proxy, type of stuff. Parents (for some unknown reason) want their child to have something wrong with them. For attention. And another part of the “me too” factor comes from parents whose children cannot be diagnosed just hoping it’s autism so that they can finally have an “answer” to their problems and push and push until someone finally says “ok, if we move this symptom over here, and call this symptom that… then yeah, he’s autistic.”
What was I saying?
Sullivan, I would think identifying a person with autism would be the easiest job in the world.
Alas, the ways in which this statement is flawed. While the stereotypical autistic can easily be identified by the general public, thanks to the brilliant awareness spread by movies such as “Rainman”, the rest of the autistic population (ie, more than you realize) are not quite as easily identifiable.
Just as Night Storm as pointed out, many of us, especially us speaking girls, have been half-way diagnosed and misdiagnosed with all sorts of diagnosis. A lot of us get labeled bipolar, for our apparent-out-of-nowhere extreme mood swings, ADHD for erratic attention spans and ” wild child” behaviour, Learning Disabled for, well, our difficulties in school, plus others I’m sure I haven’t touched on. Not that an autistic cannot have ADHD and LD, but there is reason to believe that there is a number of us that have not been diagnosed because some doctors and professionals do not see us as presenting autistic traits, or realize exactly WHY we do what we do, or refuse to believe that a person can be both autistic and ADHD.
There is also, of course, that some people are still working with the whole “autism affects boys more than girls”, so that when diagnosing, autistic traits as seen in boys are being used to assess girls. As has been pointed out by Attwood and others, this means that autistic girls whom display autistic traits differently are not being diagnosed.
So no, as the large population of undiagnosed autistic adults will confirm, it’s not so easy to identify an autistic. As some of us have not been diagnosed until (in my case) 17 years old to at least 40 years old, I would hold off on that assumption that autistics are easy to identify, based on stereotypes and based on administrative data.
Let’s see. A ten year old kid can’t read, write or talk. They are still in diapers! If you let go of them they run off to the nearest highway, river, etc. And you folks think this is not noticed until you are 20? Are we talking about the same condition here?
Amy,
You don’t think the child you describe could be misdiagnosed?
When someone says that autistics were missed, that includes misdiagnosed. It is a fact that many autistics were not given the autism diagnosis–even when they were obviously disabled. A recent paper by King and Berman showed that in the California department of developmental services, many people were given autism diagnoses later in life–even though they were identified as disabled and receiving services.
KA, as someone with Asperger’s, and doing research on autism, the greatest impediment to my work and the work of others is the nonsense from the anti-vaxers who have very thoroughly poisoned the atmosphere surrounding autism causation and treatment. The main impediment to autism research right now is the insistence of a vocal minority to continue to investigate causation ideas (not hypotheses because they have already been shown to be wrong) that will never produce useful science.
I was at a talk by Thomas Insel, where he talked about where the state of autism research is, and where he thinks it needs to go. He is a brilliant researcher with great vision, and it was in large part his recommendations to James Simons that cause him to create the Autism Research Consortium in Boston. The question period was monopolized by two angry and hostile people asking questions about vaccines and mercury. They did not want “answers”; they wanted to vent their anger and rage at Dr Insel. Dr Insel responded, that there are at least 900 approaches that need to be investigated. We have looked at one of them, vaccines, and it doesn’t explain autism. Mercury is virtually completely out of vaccines and the autism rate has not changed at all. There are at least 899 approaches that have more promise than vaccines do, we need to look at them. The vaccine deniers were unable to hear that. All they can hear is anti-vaccine rhetoric.
The hostility, anger and rage that vaccine deniers have directed at autism researchers has driven some away from the field. That is why Story Landis quit the IACC. Offit has received death threats. The children of researchers have been threatened. If you are worried about your children being victims of violence, it is hard to do cutting edge creative science.
The anti-vax deniers are now the main impediment to autism research. They want vaccines to be the answer to autism, and if the answer isn’t vaccines, they don’t want an answer. They would rather wallow in their anti-vax denialism and self-pity, and hate all things connected to vaccines and autism, even their own children.
Sullivan, by putting the anti-vax denialism in its proper perspective is helping to counter the main impediment to autism research.
@Amy: yeah. In my days of working in a pediatric hospital, I could have shown you a lot of 10 year olds who weren’t speaking, wore diapers, etc. Back in the 1980’s most of them were considered mentally retarded (DSM-III standards). They were kept in a locked hospital unit and cared for by nurses’ aids. It’s very possible that several of those kids were classically autistic (when I learned about autism in the DSM-IV, I pulled my old clinical notes on my patients; several would have fallen under Kanner’s autism rather than mental retardation, from the family history – regression, loss of language, repetitive behaviors). I never heard the term during my whole psychiatry rotation. Mental retardation, yes. Autistic, no. And this was one of the biggest children’s hospitals in the state, where I was a nursing student at a world-renowned university.
I have older family members who were “late talkers”, “weird”,
“something wrong but they aren’t retarded”…all sorts of diagnoses or titles, but not given an autisic diagnosis. (And, btw, this was in a family where 3 men were doctors). When I finally learned about autism and read the DSM-IV, I found that most of them fell under either Asperger’s or autistic. Now that they are either dead or much older, there’s no diagnosing them for sure…the living ones won’t see a “shrink”.
So yeah, autism can be missed, mis-diagnosed, and ignored by doctors if the child doesn’t fit the mold, as Nightstorm, Corina, and others have said above.
Daedalus, Is this the same Tom Insel you are defending? Could this be why they were mad? It sounds like this guy should, at a minimum, be releived of his duties. And I quote;
“Thomas R. Insel, the psychiatrist in charge of autism research at the National Institutes of Health (NIH), has a family connection to one of the vaccines potentially implicated in the sharp rise in autism rates since 1990. His brother, Richard A. Insel, was part of both the research team that developed the vaccine for Haemophilus influenza B (Hib) and the company that profited from the introduction of the first commercial Hib vaccine formulation. Richard Insel was a co-founder and director of Praxis Biologics–a vaccine development company in Rochester, New York–that together with a research team at the University of Rochester developed and then sold HibTITER®, a vaccine for Hib first licensed for children in December 1988 and for infants in October 1990. Largely based on the momentum of its successful Hib vaccine, Praxis Biologics was sold in 1989 to American Cyanamid in a deal valued at $190 million. As co-founder and director, Richard Insel held shares that gave him a 2% interest in the company, making his personal share of the transaction worth close to $4 million.
Despite his family connection to the Hib vaccine, there is neither evidence nor suggestion of undisclosed financial conflict on Thomas Insel’s part; all the Praxis Biologics transactions and development activity associated with HibTITER® occurred at least twenty years ago and involved his brother, Richard Insel. Nor has Richard Insel been involved in autism research in any way. But HibTITER® contained the ethyl mercury-based preservative thimerosal, a vaccine component that has been at the center of an ongoing controversy in autism. Many organizations concerned over vaccine safety, including many autism groups, have been asking for increased NIH funding for vaccine safety research, including research into the effects of thimerosal. In that context, this investigation of Thomas Insel’s familial link to a thimerosal-containing vaccine developed by his brother raises important questions, and advocates for more research on a possible link reacted strongly to the connection.
Put simply, Thomas Insel presides over the NIH research into the causes of autism. In his dual capacity as autism planner and brother, responding to these concerns would require him to address a personally difficult question: Did his brother help develop a product that increased the risk of autism in children?”
Yes, Amy, the same Tom Insel.
And, no, I don’t think he should be relieved of his duties. Quoting the “Age of Autism” blog here (especially in response to a post highly critical of that blog) is not a way to convince people. The Age of Autism has waged a war against Tom Insel since he made public statements that the vaccine autism link was very low priority for autism research funding.
Perhaps you might want to actually listen in or watch IACC meetings and form your own opinion, rather than doing a copy/paste job on an AoA blog piece? Dr. Insel has led some very good discussions on looking at the rising autism prevalence. He is obviously taking a lot of time on autism.
There are people on the IACC who should be relieved of their duties, that is true. People who use the Age of Autism to intimidate and smear other IACC members. Tom Insel is not one of those people.
“Let’s see. A ten year old kid can’t read, write or talk. They are still in diapers! If you let go of them they run off to the nearest highway, river, etc. And you folks think this is not noticed until you are 20? Are we talking about the same condition here?”
I guess then you are saying that the 12,356 in your state have the same condition/symptoms as the above then? I have a 5 year old that can read, write, talk and control her bowels…and is still within the ASD criterea, does she not count? She certainly would not have been counted in 1990.
Before you roll your eyes, I also have a 7 year old who can’t do any of these things, shouldn’t I be glad that this is 2009 and not 1990 when she may have likely been misdiagnosed and ‘warehoused’ in a school with all the other disabled kids?
I think that your oversimplification does a disservice to BOTH my kids. If there is indeed an increase in kids who are more profoundly impacted over the last 20 years, screaming about generic exponetial increases (while ignoring the factors involved) only has researchers scrambling to disprove baseless theories that pop up to explain it. I’d rather have them looking at classifying subgroups within the spectrum to figure out if there are increases within subgroups and what is really going on.
According to AOA, declarations of conflict of interest now extend to siblings. Yeah, let’s fire Insel cuz his brother developed a life saving vaccine. No good deed goes unpunished.
Amy:
Here is a newsflash for you Amy: that is not the only definition of autism. It could also define many other disorders, as Dawn noted. That could also be part of the description of a young man I saw yesterday who can not read, write or talk (oh, and he couldn’t walk, he was confined to a reclining wheelchair, so he was in no danger of running onto a highway). It could also be the description of a child in my kids’ school many years ago who was both blind and deaf (who could break into a run with disastrous results).
You might want to learn about the changes in the DSM over the years:
http://www.unstrange.com/dsm1.html
My twenty-one year old son could not speak at age three, so he entered a special ed. preschool (where no one had an official diagnosis of autism, though some clearly were with our 20-20 hindsight, and I believe one little girl pretty much fit Nightstorm’s description of herself except for the talking part!). According to the preschool teacher many of these kids would have been considered mentally retarded and just sent to an institution fifteen years before just because they could not talk (and were not deaf, though sometimes deaf kids were diagnosed as mentally retarded before someone figured out they had a severe hearing loss).
Sullivan, my post did not contain the words age of autism. Do you care to respond to anything in the actual post? Trying to discredit the messenger is not a good way to convince me of anything.
Amy
You quoted the Age of Autism blog post When Vaccine Development is Family Business: Thomas Insel’s Conflicted Role on Vaccines and Autism. I don’t care if you mention the blog’s name or not, the content originated there.
I am not trying to convince you of anything. I am just pointing out where your statements are incorrect.
Amy, HibTITER vaccine in single dose vials never contained thimerosal; the multi-dose vials were unavailable after 2002.
http://www.fda.gov/biologicsbloodvaccines/safetyavailability/vaccinesafety/ucm096228
How come there is not a hint of a drop in autism since thimerosal has been removed from vaccines? The simplest explanation is that the rise in autism was never caused by mercury in vaccines, so taking the mercury out did nothing to reduce it.
The research has been done, and the research shows no connection between mercury and autism. There are multiple lines of evidence, all of which point to no connection between mercury and autism.
1. Autism rates did not drop when mercury removed from vaccines.
2. There has been no study showing toxic levels of mercury in people with autism.
3. Individuals exposed to high levels of mercury in utero (order of magnitude higher than US populations) (Faroe Islands) show absolutely no excess of autism.
4. Populations exposed to very high levels of mercury (toxic levels leading to overt poisoning and even 1,000 deaths from mercury poisoning) show no excess of autism (cohort of children exposed to mercury containing teething powders).
5. Symptoms of autism bear no resemblance to symptoms of mercury poisoning.
The “mercury causes autism” idea is dead. There is no evidence that it is correct and there is lots of evidence that it is not correct. The only people continuing to beat the dead horse of the “mercury causes autism” idea are the biomedical quacks making money by scamming parents into chelating their children, the quack lawyers trying to scam money by tricking the court into ruling in their favor, the quack anti-vax “autism advocacy” groups that are trying to scam donors into giving them money, and the naïve and gullible who believe the lies of the first three groups and continue to give them money. If the naïve, self-deluded and gullible stopped giving money to the scammers the anti-vax hype and media campaigns would stop.
Sorry to be so harsh, but those who still believe mercury is important in autism are deluded. Yes, it is a delusion to persist in a belief when there is strong and compelling evidence that the belief is false. That point was passed a long time ago with autism and mercury. There is now overwhelming evidence that mercury is unrelated to autism. Until the “mercury causes autism” quacks come up with data which refutes the overwhelming evidence that mercury is unrelated to autism, they deserve to be marginalized and ignored. They are wasting everyone’s time by continuing to put out disinformation and lies. They are not adding anything to the autism causation and treatment discussion, they are poisoning the atmosphere and making finding real causation and real treatments more difficult.
The questioning period at the talk that Dr Insel gave was cut short because of the hostility of a few questioners in the audience. The talk was at MIT, and was the best attended of the many talks that I have been to there, the primary auditorium was filled, they had an overflow auditorium too. The hostility and anger from people who had nothing to contribute to the scientific discussion of autism causation and treatment cut short that discussion.
I have a feeling that Amy’s here trolling – nothing else. Just trolling.
“How come there is not a hint of a drop in autism since thimerosal has been removed from vaccines?” Daedalus
“Obviously, many refer to me as a denialist since I do not subscribe to the idea that there is good evidence for an autism epidemic”. Sullivan
OK, is autism increasing or isn’t it? You folks are kinda funny. You can’t have it both ways!
Ajd we aren’t–funny or trying to have it both ways.
The autism prevalence–that is the number of people identified with autism–has continued to rise even though thimerosal was removed. That tells us that thimerosal is not the cause of the increase observed.
There is a big difference between the number identified as autistic and the number who are autistic. As of now, there are a number of causes for the increase in prevalence that have been identified. They include a number of ways more autistics have been correctly identified.
Amy, when you cut and paste stuff from another website it only takes a quick Google of a section to find out where you got it from.
“There is a big difference between the number identified as autistic and the number who are autistic.” Sullivan
So is the study done by the Director of Immunization in California (the one that says rates of autism are still skyrocketing after the removal of thimerosal)using the number of those identified as autistic or those that really are autistic? If he is using the number of those just identified as autistic rather than those who really are autistic does he really know if autism rates are rising after the removal of thimerosal (even though thimerosal has not been removed)?
Perry, what is missing from your comment is the title, author, date and other information for someone to find what you are talking about.
But still, that in no way shows that measles is a “mild childhood infection.” Something that is actually the topic of this blog posting.
Chris,
Perry is referring to this paper,
Continuing Increases in Autism Reported to California’s Developmental Services System
He is trying to smear the first author, Robert Schechter, as publishing a biased work, since Dr. Schechter works in the immunizations branch of the California department of public health. A failed idea on its own, Perry neglects to mention that Dr. Schechter also works for the California Center for Autism and Developmental Disabilities Research and Epidemiology. Perry doesn’t mention that Dr. Grether (the coauthor) doesn’t work in immunizations, but instead works in Environmental Health Investigations Branch.
His main point, apparently, is that since we can’t say whether real autism rates are going up (or down, by the way) we can’t say that thimerosal isn’t a cause.
It is part of the intellectual dishonesty that permeates the vaccines-cause-autism groups.
The argument for thimerosal causation was twofold
1) autism “rates” increased at the same time that mercury exposure through vaccines increased
2) autism somehow is supposed to look like mercury poisoning.
(2) is just plain false. Autism does not present like mercury poisoning. Never did.
What Schechter and Grether did was remove (1). The rise in reported rates that the mercury crowd used to promote the “epidemic” wasn’t caused by thimerosal.
So, the question to Perry (and those with his view) is this: make a convincing argument that thimerosal causes autism without the rise in reported autism rate, and with the acknowledgment that mercury poisoning looks very different from autism.
The big take away message here is that the rise in autism rates is due to something else. We know that effects like changes in awareness, diagnostic practices and the like account for large fractions of the rise. It’s been shown, some in the very papers people like Perry use. Is there a real rise left over when all the artifacts are taken out? Good question. We won’t find out if we deny the artifacts, which is what those shouting “epidemic” try to do.
The sad–and I do mean sad–result of all this is the fact that there is almost certainly a huge contingent of autistic adults who are not identified. If people like Perry cared about autistics, and not just the autism “epidemic”, they would join the rest of us in calling for better services and identification of those adults.
It is the right thing to do.
It is also in the best interest of parents of young autistic children.
Perry,
if you are relying on a study to support your argument please give a citation so the rest of us can read it. I suspect you are referring to Continuing Increases in Autism Reported to California’s Developmental Services System: Mercury in Retrograde Robert Schechter, MD, MSc; Judith K. Grether, PhD. Arch Gen Psychiatry. 2008;65(1):19-24.
If you have read it you will know that the authors are very careful to point out that they are using administrative data which only records children with an autism diagnosis who are also in receipt of services from California DDS. So that excludes all undiagnosed autistic children and all autistic children not eligible for services. the authors themselves note that a change in the criteria for services means that the actually numbers of autistic children in California are probably higher than the figures from DDS. They conclude that the data show a steady increase recorded over the time period 1995 to 2007 that does not support the hypothesis that Thiomersal is a primary cause of autism.
Your second question makes no sense at all.
“The sad—and I do mean sad—result of all this is the fact that there is almost certainly a huge contingent of autistic adults who are not identified. If people like Perry cared about autistics, and not just the autism “epidemic”, they would join the rest of us in calling for better services and identification of those adults.
It is the right thing to do.
It is also in the best interest of parents of young autistic children”
Why??
One of the genetics only crowd likes to claim is that there is a lot more HFA/Aspie/NLD that’s being dx’d in children to make up the numbers. My question is why would these adults that work at places like NASA, Microsoft, Google etc want to be dx’d?? They have lives, real lives, jobs, families, cars, homes etc etc etc… What is in it for them to be dx’d. NOTHING.
Also, I find it interesting for those that swear science is the “god”, that there are posts by aspies out there telling us with children with AUTISTIC DISORDER that they know exactly what our children are going through except there isn’t ONE DROP of scientific proof that links these disorders…. Not one.
So… are they part of the spectrum or not. Are they the same or not. Are they making the numbers higher now that they are being dx’d and put under the heading of “spectrum” instead of their own dx???
Lot’s of questions. And not one iota of genetic proof anywhere.
@Amy: I echo what Sullivan said. This is completely ignorant. Prevalence studies are very complex and very expensive. There’s a screening process, where some autistic persons might be missed, depending on how sensitive the screening method and cutoff is. Final evaluations usually take hours. Not everyone who passes the screening gets diagnosed. In a lot of cases it might not be clear right away if someone is or isn’t autistic, and to some extent this is a subjective expert opinion of the evaluator.
Ah, thanks guys. Sullivan said:
And what exactly does that have to do with measles? Or even the MMR vaccine? The MMR vaccine has never had thimerosal. Is he trying to divert the comments to some other direction because he has no data to show that measles was such a pleasant childhood disease that a measles doll was sold?
You people are all autistic (non-identified) aren’t you. Im sorry!
Bye Bye, Perry.
Is that meant as an insult?
Irregardless, there’s no conceivable way for any of us to prove our diagnosis without revealing who we are.
I for one, am certainly not willing to reveal who I am, even if 99% of readers here wouldn’t care.
Suffice to say, if Perry is trying to insinuate that we are self-diagnosers, he/she is most certainly factually wrong regardless of what value he/she places on it.
Actually, Perry just revealed his lack of literacy. He posted some silly stuff on mercury, when the blog post was clearly about measles. Perhaps he thought we were autistic because some of us like to stay (mostly) on topic.
Perry = Troll
Nuff said.
S/he must have a very empty life it this is all that they can think of to do.
Almost feel sorry for this poor idiot.
Joseph:
“Is that meant as an insult?”
I think it’s meant to be a ‘smart’ comment. Entirely the opposite, in fact, of how it actually comes across.
Dedj:
“Suffice to say, if Perry is trying to insinuate that we are self-diagnosers, he/she is most certainly factually wrong regardless of what value he/she places on it.”
Absolutely. And if Perry is trying to self-diagnose as intellectually competent… s/he is very wrong. Even if s/he can claim high scores on IQ tests, this does not guarantee intellectual competence. And his/her remarks here have demonstrated as much.
More on topic here. Dr. Crislip has posted an interesting comment on measles returning to the USA. Well worth a read.
He also has some podcasts. This one is very interesting, entertaining, informative and pertinent to this blog comment: Lets Kill The Children or A Defense of Vaccines.
Because the world needs more Mark Crislip.
. My question is why would these adults that work at places like NASA, Microsoft, Google etc want to be dx’d??
That’s very stereotypical insinuation there farmwife.
“That’s very stereotypical insinuation there farmwife”
Is it??
Seems Temple Grandin said so long ago about “without us geeks nothing would been done”
There’s parents making up companies – computers – for their autistic children.
The prevailing thought is that autistics are good at computers/numbers etc.
Silicone Valley etc have higher than normal rates of autistics – children and adults.
But it’s still true… ASAN and the Hub’ite’s gripe about their lack of funding… Did they think these adults with high paying jobs… the Aspies that don’t think they are “owed”… Like Aspergers square 8 and cronies… would hand over $$$ to them.
Also, talking about stereotypical.. have you read the latest posts from Asperger’s square 8… “pot/kettle/black”… you know the saying… And their assumption all “autistics” are sociable…
Silicon valley does not. You are referring to the false impression propogated by Wired magazine in “the Geek Syndrome”, a story from about 10 years ago. There is no evidence at all that this is true.
I have read the posts there. I laugh at the comics. The latest one made me think of you. You did a great job right here of proving Bev right. Seriously, if I had tried to do a parody of you responding to her post, I couldn’t have done better.
Farmwife, I believe in an open discussion, but I seriously have to consider if you ever offer anything of value to the conversation.
I know what a denialist is, being so tuned out to alternative views that you have to plagiarize someone else instead of examining the issue directly.