I must admit that I've never heard of Margerite Kelly. Apparently she's some sort of advice columnist for the Washington Post. Apparently she's also fairly clueless, if her column from last Friday is any indication. At least, she's clueless about autism. In her column Diagnosing Autism Is Never an Easy Process, she betrays a whole lot of ignorance about autism, autism treatments, and the quackery that is being sold to parents as a "cure" for autism.
A parent writes to Ms. Kelly about her two-year-old nephew, who is throwing tantrums and showing signs that concern her that he may be autistic. Ms. Kelly responds with advice that is initially reasonable but then descends into a truly irresponsible advocacy of quackery that does not belong in the pages of a major newspaper. First the semi-reasonable:
It would be both foolish and unkind to tell your sister that her son might be autistic, however, because the possibility is frightening and because you might well be wrong. Instead, tell your sister that you think her son has a physical problem; that it's not her fault; and that the sooner it is diagnosed, the more successful the treatment will be.It will take a doctor, not an auntie, to figure out why your nephew speaks poorly and has tantrums every day. He could be autistic but he could also be -- like many little boys -- a slow talker, and his tantrums may last a long time simply because he has allergies or a sensory processing disorder. Autistic children usually have these problems, but so do many children who aren't autistic.
While it's reasonable for this woman to urge her sister to take her son to see a pediatrician about these problems and it may even be reasonable to use the diversion of a physical problem (which could be true) to distract her from the possibility of autism, it is disturbing that she views autism as so frightening. The main reason it's frightening is because that's the message in the media and the anti-vaccine movement: that autism is terrifying, that it "steals the child's soul" (that's what Jenny McCarthy's co-author has said); that it is beyond hope. While there's no doubt that raising a child with severe autism is an incredible challenge, the image of autism many parents have is that it is all like the most severe cases, when it is not. As the term "autism spectrum disorders" implies, it's a spectrum, from the very mild to the very severe.
Here's where Ms. Kelly goes straight off the cliff:
No one knows why one child in 150 is autistic today when only one out of 2,500 was autistic 50 years ago, but there are a lot of theories. Some cutting-edge doctors think the disorder is caused by oxidative stress or by certain proteins in the body. Others blame autism on mercury, the preservative that was used in vaccines -- and in some cases, still is -- or they think autism occurs if a child gets too much aluminum in his body or not enough vitamin D. And those are just some of the theories.
First, the pedant in me can't help but express my irritation that Ms. Kelly doesn't know that the word "theory" in science does not mean what she apparently thinks it does. She means hypotheses, not theories. In actuality, they're not even hypotheses; they're more like wild guesses, and these "cutting edge" doctors to whom she refers are, for the most part, quacks who subject children to dubious therapies such as hyperbaric oxygen, chelation therapy, and others. True, there are real scientists studying oxidative pathways in autism, but they are not the ones to whom she is referring, and they are not the ones pushing all sorts of supplements. How do I know this? Because this is what Ms. Kelly writes next:
Your sister can probably learn about most of them if she goes to the Autism Research Institute's next semiannual DAN (Defeat Autism Now) conference in Dallas from Oct. 8 to 12 and if you give her some books on autism, such as "Healing and Preventing Autism" by Jenny McCarthy and Jerry Kartzinel (Dutton, $27) or "Overcoming Autism" by Lynn Kern Koegel and Claire LaZebnik (Penguin, $15). "Could It Be Autism?" by Nancy D. Wiseman (Broadway, $13) is another good book, and so is "Eating for Autism" by Elizabeth Strickland, written with Suzanne McCloskey (DaCapo, $18). Strickland, a registered dietitian, gives some excellent recipes for the GF/CF diet and a lot of good advice.
Yep. She's actually recommending books by Jenny McCarthy and, even worse, that this mother attend the DAN! conference. Just look at the list of speakers. It includes luminaries of the anti-vaccine/autism quackery movement as Jeff Bradstreet, Dan Rossignol, Anju Usman, and Lisa Ackerman. If you peruse the list, the usual "biomedical" topics are all there: vaccines as a cause of autism, supplements, "biomedical" treatments, "detoxification," it's all there.
Ms. Kelly's also parroting a key myth of the anti-vaccine movement, namely that there has been a huge increase in autism in the last 20 years and therefore "something" must have caused it. Of course, that "something" isn't what Ms. Kelly or other "biomeddlers" think it is. That something is a combination of the broadening of the diagnostic criteria for autism spectrum disorders that occurred in 1994, increased awareness, increased screening, and diagnostic substitution. She also falls for the myth of "toxins" in vaccines, in particular the now discredited idea that mercury in vaccines somehow causes autism. Apparently, Ms. Kelly is unaware that there hasn't been mercury in childhood vaccines other than the flu vaccine (which most children still don't receive) since early 2002 and that autism rates have not declined.
It's always depressing to see such ignorance proudly displayed by a columnist with a national reach and such truly bad recommendations being given to a woman who is facing the possibility of autism in her nephew, recommendations that show a shocking lack of understanding, an embrace of quackery, and a belief in the lies of the anti-vaccine movement. That's why I think some polite e-mails to Ms. Kelly are in order setting this woman straight. It may be a waste of time, but perhaps she is educable.
- Log in to post comments
More like this
On a guess, she googled autism and then amazon searched for autism books.
Meanwhile, the University of Toronto's "School of Public Health" is proudly hosting Canada's first Autism One conference http://www.autismcanada.org/calendar.htm I believe this is what the word "gobsmacked" is for.
Margerite Kelly?
Into the sack.
I've read her over the years - she's dotty.
Well written-it's important to call out ignorance when it's published. Free speech does not men equal speech.
Thanks for this. I hope our emails can help to keep the infectious disease promoters off the pages of national advice columns aimed at parents, or at least make the Post aware that some advice is, in fact, dangerous.
Your "skepticism" is little more than name calling, taunting anyone who does not subscribe to your Neurodiversity articles of faith.
Autism disorders are disorders, identified as such in the DSM. They restrict the lives of those affected by them particularly the severely affected who do not share the many blessings of the "gobsmacked" Michelle Dawson. Even Ms Dawson with her considerable intellect and media skills and experience filed a complaint against her previous employer Canada Post on the basis of her disability ... autism.
For the severely autistic living in institutional care autism truly is a very limited life style. I have visited two such institutions and made actual direct observation of those realities. I trust you have made such first hand visits and observations as well? I have provided pro bono legal services to some autistic and Aspergers youths who ran afoul with the law and seen the difficulties their disorders presented for them. I trust you have such first hand direct observation as well?
I also see the realities of my son's severe autistic disorder deficits. These realities are not reflected in the experiences of the high functioning Ms Dawson nor in your somewhat childish rhetoric. I have seen severe autistic disorder first hand. It is not the autism of career "autists" or the autism of this superficial name calling web site. I have seen severe autism reality first hand. I know you have not.
The DSM was modified in 1993-4. There have been several very dramatic increases since then. These old excuses are getting very tired and worn out. Your unquestioning resort to these excuses to argue against a real increase does not indicate the mind of a skeptic, a scientist or a lawyer who must look at the evidence.
The recent University of California study suggested that the increases in autism can no longer be explained by simple resort to these diagnostic and social factors. One of the lead researchers in that effort has stated that it is time to address the imbalance in autism research funding that has seen genetic autism research receive 10 -20 times the amount of environmental autism research. Surely even a so called skeptic can acknowledge that if you research only genetic factors of autism you will find only genetic factors.
Simon Baron Cohen has stated on at least 3 occasions that the fact that the existence of cases where one identical twin is autistic but not the other indicates the presence of environmental factors. It is time to do the research to explore those factors. Even the IACC is reluctantly coming to that conclusion in its strategic autism research plan.
As for the vaccine connection I have never asserted such a connection but I have recently come to the view that the issue is not closed. The studies done are marked by conflicts, ties to pharmaceutical companies. Former NIH head Bernadine Healy whose academic credentials I believe come close to matching your own has said that the epidemiological studies are not specific enough to address the possible impact of vaccines on vulnerable populations subsets. She also points out that flu vaccines have continued to contain thimerosal and have been given to pregnant women an experience we may see again in large numbers with the Swine Flu vaccine.
Dr. Jon Poling is a neurologist and a professor who advocates successfully on behalf of his daughter whose autism resulted from the impact of vaccinations on her preexisting mitochondrial disorder. The government's use of the term "autistic like symptoms" in settling that case was somewhat comical since autism is currently defined only by symptoms and not by biological markers. I am sure that proud skeptic like yourself can understand that the government did not settle because the Polings did NOT have a case. They settled before the case went to the court and became more readily publicized. A similar situation occurred in the Banks case.
Mocking everyone and every idea that disagrees with your pet beliefs is not skepticism. It is school yard nonsense. Grow up.
I always turn to movie actors for advice on highly technical topics. Why just the other day, Kevin Costner told me in a caffeine-induced vision that cold fusion is right around the corner.
"The child may or may not be autistic, and you should really try to avoid scaring the mother, so DEFINITELY encourage her to attend a DAN! conference."
WTF??? And then she goes on to suggest more interventions, including dietary interventions without first even determining whether the child has any dietary issues. This *after* saying that there are many possible explanations for the kid's behavior, and that the kid should see a doctor to rule out physical or neurological problems.
Crazy. But then, it's an advice column, and sometimes advice columnists feel compelled to give advice beyond what is necessary.
Mr Doherty -- autism is indeed a disorder. That doesn't mean it deserves the stigma it has received. Decades spent trying to get the public to accept mentally retarded children for who they are has been thrown out the window by those who are now working to stigmatize autism the way that mental retardation once was. It is a serious condition, and it generally needs treatment (or at least understanding; the great thing about understanding a developmental disorder is that once you understand how a particular child learns, you can tailor the child's education to fit that learning style). But fear should not be the first reaction.
BTW, are you aware that Hannah Poling's condition is extremely rare, cannot account for even a significant proportion of autism cases, and could have been triggered just as easily by a garden-variety viral or bacterial infection? That it happened to be a vaccine is immaterial; her condition could be triggered by anything which causes a fever. It is therefore impossible to determine whether the vaccine actually caused it, beyond a shadow of a doubt, but it is sufficiently plausible that she was awarded compensation. That's what VICP is for. It's intended to be generous. You seem to labor under the delusion that this has some meaning outside of her case.
(Also, did you know that "autistic like symptoms" isn't bullshit but is in fact a statement that she did not meet the diagnostic criteria for autism?)
I second Sigmund...
into the sack!
50 years ago parents disciplined their children. They didn't tolerate prolonged tantrums and certainly didn't cater to the children who were engaging in them. I think "modern" parenting malpractice contributes a lot to the explosion of diagnoses of ADHD and autism.
Personally, I take serious offense at her contention that the "cutting edge doctors" are the ones using the loopy stuff. Meanwhile, serious doctors who are actually making breakthroughs in real research into the diagnosis and treatment of autism are, what? Not cutting edge enough, apparently? Because they don't make up strange shit and try to actually base their treatments on science?
"Conventional" doctors can certainly be "cutting edge," without resorting to whackery. The autism center at Indiana University, for example, is outstanding and doing great, _cutting edge_ work on autism.
And I think you're a fecking idiot.
"The DSM was modified in 1993-4. There have been several very dramatic increases since then. These old excuses are getting very tired and worn out. Your unquestioning resort to these excuses to argue against a real increase does not indicate the mind of a skeptic, a scientist or a lawyer who must look at the evidence."
Indeed, if the increase in autism were only due to broadening of diagnostic criteria, it seems that we should see a leveling off at some point, as everyone becomes "more aware" of the changes. We're not seeing that. Furthermore, the increase in autism started long before 1994, (more like 1981) so the idea that changes in the diagnostic criteria and increased "awareness" account for the increase in autism is a crock of shit.
"it is disturbing that she views autism as so frightening. The main reason it's frightening is because that's the message in the media and the anti-vaccine movement: that autism is terrifying"
Why is this "disturbing?" For many families, including mine, autism IS frightening.
Imagine the terror that Trudy Steuernagel must have felt as she was being beaten to death by her 18 year old autistic son. Imagine the horror that the family of Antoinette Reed must be feeling right now, knowing that their autistic son killed her. Try imagining your out of control autistic teenager dragging you through the house by your hair, and having him handcuffed and shipped off to the state hospital, drugged with Haldol and Ativan and placed in 4-point restraints. Not quite the rosy picture of autism that you neurodiversity types paint, eh?
My autistic child, and many others like him are rapidly approaching adulthood, and the need for services will overwhelm available resources. My child will never live a normal life. Ever. He can't even tie his shoes or write his name. He is 15 years old. The thought of what his life will be like after I die does indeed terrify me, so pardon me if I no longer feel like waiting around another 10 years for you "scientists" to 1) admit that there is indeed a problem and 2) to do something about it. I'm going to do everything in my power to help him NOW, and that includes "biomeddling".
Damn it, we're going to need a bigger sack.
Well, these personal stories certainly convinced me beyond what any, ahem, 'scientists' say.
Harold,
[first 8 or 9 or 15 paragraphs omitted]... Mocking everyone and every idea that disagrees with your pet beliefs is not skepticism. It is school yard nonsense.
Welcome to the internet, have you never been here?
Grow up.
The best irony is unintentional.
As a surgeon who was very successful you can't possibly understand the hardships of someone with mild autism like myself. Not being able to make a living or have romantic relationships, the uncontrollable self-stimulatory behaviors, the phobias, in addition to the very bad perceptual motor impairments, that prevented me from being able to handwrite properly and do other motor activities. The fact that I had to go to special education schools and could not get the same sort of education you could get and become a surgeon.
Even the specter of mild autism can indeed be frightening and the prognosis even for this is not very favorable or good. It is wrong for you to imply that mild autism is not frightening or an innocuous condition
I think you spend too much time listening to neurodiversity propagandists who really don't know how much some even mildly autistic persons suffer and the hardships of our lives.
Neurodiversity is a movement predicated on lies, hate and propaganda. They only increase the stigma that autism receives with their behavior. Just the opposite of their claimed effect.
Dammit. It always hurts when it's your alma mater that succumbs to the woo (not that I'm a graduate of the School of Public Health, but I am a U of T alum).
"50 years ago... discipline... modern parenting malpractice"
All the right words are there, but in the wrong order. Just move malpractice to the front, near discipline.
Rearranged a little, this captures the entire "autism spectrum" issue. My son has mild autism. At age 4 he liked to recite the capitals of all the countries in the world. The "autism" was identified, we modified our approach to raising him, he received services at school, and he's doing well. 40 years ago, I recited the brightest 3 stars in each constellation. My teachers told my parents that I should play outdoors more often. In spite of not being diagnosed or receiving services, I'm doing well. 70 years ago, my dad liked to recite poems in their original language. His teachers beat him with a stick. And he did well. All three of us had the same characteristics. Society changed.
...and thus the Dara O'Briain "get in the f***ing sack" meme entered the mainstream blogosphere. And there was much rejoicing.
"No one knows why one child in 150 is autistic today when only one out of 2,500 was autistic 50 years ago, but there are a lot of theories."
You scientists are hopeless. What you call "autism" is increasing because over the past 50 years, the Yin part of the body of the average citizen in the west has decreased as a result of lifestyle changes and poor health advice.
I could talk alot about what is going on but that doesn't work. What works is people seeing things with their own two eyes.
If you want to know why autism is more prevalent today than it was 50 years ago, all you have to do is watch TV or movies from 50 years ago.
If the scientists among you will observe the people in those 50 year old TV and movies, you will find that they are different than the people of today. If you got out your pencil and paper and wrote down your observations like a first year college student, you would then be able to associate body characteristics of people back then with low autism rates, and the body characteristics of people today with high autism rates.
What you will find is that people 50 years ago were thicker and stronger. Those people matured at a younger age. A 20 year old of 50 years ago looks like an adult of today. What you will find about the people of today is that they are thin and weak. The people of today look like children into their 40's and 50's. They don't look like young looking mature people, they look like children who never matured.
If you simpleton scientists could do just this little tiny bit of easy research, you would gain insight into autism and the Yin part of the body that you seem to think does not exist.
It is all so easy. Watching you scientists scratch your heads about it is teeth grindingly frustrating. You people are supposed to be curing these autism sufferers and all you are doing is feeding them expensive pills that will never do anything about the root cause of their autism problem. Inadequate development of the Yin part of their body.
Remember. Simple observation and thinking about what you see is all that is required to learn about this. No expensive equipment. No labs. Nothing. Just your eyes and your brain.
Don't be afraid. Using your eyes and brains instead of hiding behind an impressive lab full of expensive equipment may be scary, but I think you can do it.
And if you smart guys with Phd's really can't figure it out, I suppose I could round up the pictures for you to compare to each other. Sheesh!
Jonathan, I'm confused. On one hand you blame "neurodiversity," but then bemoan being sent to special ed classes. Maybe I am confused, but it seems that these are opposite approaches.
I think you spend too much time listening to neurodiversity propagandists who really don't know how much some even mildly autistic persons suffer and the hardships of our lives.
Ummm... since many of the self-same advocates are themselves mildly autistic, I think they are very well aware of the hardships... That said, I think you misinterpret Orac's point, which is that blanket characterizations of autism as a "frightening" condition are likely to dissuade parents from seeking realistic and effective medical advice (and interventions as and where appropriate), and instead drive them towards "therapies" that are ineffective and frankly dangerous.
Hahahahahahahahahahahahahahahahahaha :D
And if you smart guys with Phd's really can't figure it out, I suppose I could round up the pictures for you to compare to each other. Sheesh!
Dunning-Kruger effect for the win!
"As a surgeon who was very successful you can't possibly understand the hardships of someone with mild autism like myself."
I challenge you to say all that to Temple Grandin, who doesn't just have "mild" autism, but the kind of autism that was actually diagnosable fifty years ago. She's very successful, and quite influential in the world of livestock handling. Her contributions to abbatoir design have revolutionized the industry and greatly improved the wellbeing of animals raised for slaughter.
No one here is disputing that autism is a serious condition. Are there challenges? Yes. Should they concern any parent who hears the diagnosis? Yes, absolutely. But they should not be associated with so much overriding terror that parents are afraid to get their children properly diagnosed, or panic and subject the kids to dangerous experimentation. Truth is, the real problem isn't that some people have autism. It's that there is a lack of services to cope with it. And that lack of services has come about because of precisely the kind of stereotyping that Orac is talking about.
Perhaps you don't read this blog regularly, so you're not aware of the context of Orac's comments. He doesn't dispute that autism is a serious condition which can require lifelong care. What he disputes is the sort of fearmongering (with, yes, language such as "soulless monster") that leads to panic. When a parent hears their pediatrician say "I think you should get him evaluated for autism", the first reaction shouldn't be to rush the child off for chelation therapy, to abandon vaccination of any other children in the household, to radically alter the diet of a growing child, or to start dumping thousands of dollars a month into therapies with no evidence of efficacy. Yet that is what's happening, because of the fearmongering of those who offer these dangerous and unproven therapies for a condition which isn't really curable, but is manageable.
People get the idea that autistic people are monsters, and then they don't want to spend money to help them. They want to lock them away where they will not hurt the general public. That's what was done with autistic people a century ago. People were so afraid that they decided that these people were not really people, and that it would be okay to take away their rights to life, liberty, property, and self-determination.
jonathan, I think making "neurodiversity" a movement a la feminism has some of the same dangers that feminism itself has -- that is, it runs the risk of becoming a parody of its goal. That doesn't mean it's always wrong, nor does it mean that the basic idea isn't sound. Feminists are definitely known to go overboard; but women do deserve equal rights to men. Neurodiversity could eventually go too far as well; but that doesn't mean autistic people (and depressed people, and addicted people, and so on) aren't every bit as worthy as "normal" people.
You say that neurodiversity has had the opposite effect, that it has increased stigma -- could you elaborate, please? I'm not aware of any instances of this happening, especially since very people in the general public are even aware of the movement. (They're more aware of Age of Autism and such.)
What you will find is that people 50 years ago were thicker and stronger. Those people matured at a younger age. A 20 year old of 50 years ago looks like an adult of today. What you will find about the people of today is that they are thin and weak. The people of today look like children into their 40's and 50's. They don't look like young looking mature people, they look like children who never matured.
So, are you suggesting the cure for autism is to start sending children back down the mines to give the little buggers some proper exercise? That's certainly a novel idea, but with diagnosis now possible at 14 months they're not going to be able to drag particularly profitable amounts of coal :(
Gotta love how the "sob stories" of people with autism who "will never achieve anything" could (and should) be addressed by... social supports and accomodations! Of course, the biomed types never mention how time and money committed to the quackery is time and money taken away from those needed supports. After all, if they can "cure" autism, there's no need for those support services.
@Harold L. Doherty
But then there is the flaw in that study in that it used a database the records requests for service. Certainly, as people become more aware, as the diagnosis changes, as earlier screening is performed, and so on, more people are going to be classified as being on the spectrum of ASDs, leading to more requests for services. I might be wrong, but I don't recall that being controlled for in that study.
And at #22, the inevetable return of the great crazy Happeh...
"Your comment has been received and held for approval by the blog owner."
Has this blogs former troll in residence become He-Who-Shall-Not-Be-Named?
@ jonathan: I disagree. I think Orac's writing shows a great deal of compassion for people who are *not* in the same situation as he himself is.For example, he speaks so eloquently about cancer patients' experiences,those of parents of autistic children,and others. Personally,I have counseled people who are very different from myself- you learn to *try* to put yourself in their position, asking yourself,"How would *I* feel if this happened to me?". I know it is not an exact equivalence,but it is an attempt that we *do* make that goes alongside our education.I did very well in school but I might work with a young person who is bright but has to compete in English, which is not her native language- so I might think:"What if I had to go to college in India, after living there for only 5 years".....etc.My best childhood friend chose to become a special education/speech correction teacher *precisely* because of her experiences with a neighborhood child who had CP when she was a teenager: she volunteered to help his mother with his PT at home.Now, I'm not saying that everyone tries to understand, but some people do.
"Damn it, we're going to need a bigger sack."
And lots of sticks...
50 years ago parents disciplined their children. They didn't tolerate prolonged tantrums and certainly didn't cater to the children who were engaging in them. I think "modern" parenting malpractice contributes a lot to the explosion of diagnoses of ADHD and autism.
Posted by: military wife | August 24, 2009 9:53 AM
In the vernacular of kids these days, "B*tch, please..."
I have a brother who is nearing 55 years of age, whom I believe to have Asperger Syndrome. My military Dad did his damnedest to beat the autism out of my brother during his youth, and all that resulted from that was that my Dad lives on the east coast and my brother lives on the west coast. He got the message loud and clear that his differences were not acceptable, but it never stopped him from being different.
Wow, maybe a couple of sacks...
Thank you, Orac, for these posts. We need bloggers like you to question the shallow and fearful and wrong views about autism and autism spectrum disorders.
As a person who was diagnosed over forty years ago with autism under the narrower standards, and who is now dx with Aspergers, I am confused at the politicization of the disorder. There is hope for nearly all cases of ASD and I am proof of that as a student who's working for a PHd and with a family. The biggest leap forward came for me when I accepted it. I also realize there are cases who won't develop to the level I have, but they are still human beings who deserve support, respect, and care.
These stories of the most extreme cases of autism do nothing but spread fear and ignorance about the condition, and stigmatize ASDs as well.
Again, thanks, Orac. We need as many rational voices as possible, and hopefully those who make policy decisions will rely on those, and not ignorance or blindered thinking.
Yeah, let's go back to the good old days when child and spousal abuse wasn't anyone else's business, anti-depressant prescriptions were at record highs, colored folk couldn't drink from the same fountain, and quirky kids were quietly shoved into institutions and ignored.
Nostalgia is the destruction of history.
hopeless said, "If you want to know why autism is more prevalent today than it was 50 years ago, all you have to do is watch TV or movies from 50 years ago."
There is going to be a nexus of crazy in that sack.
@22
Happeh! So nice to see you again.
Orac, you do draw the nutbars, don't you.
I know fifth-graders with more common sense than Marguerite Kelly. If all the mainstream doctors and scientists say one thing, and a few wild-eyed profiteers say another...sure, Marge, slurp up the claims of the profiteers! It's the Kelly Way!
How sad, Orac, you've been demoted to "scientist", quotation marks and all :(
"Imagine the terror that Trudy Steuernagel must have felt as she was being beaten to death by her 18 year old autistic son. Imagine the horror that the family of Antoinette Reed must be feeling right now, knowing that their autistic son killed her. Try imagining your out of control autistic teenager dragging you through the house by your hair, and having him handcuffed and shipped off to the state hospital, drugged with Haldol and Ativan and placed in 4-point restraints. Not quite the rosy picture of autism that you neurodiversity types paint, eh?"
I bet that cheered up a lot of people with autistic kids.
"@22
Happeh! So nice to see you again."
Happeh-eh-eh-heh-heh-heh-heh!
In reply to Harold Doherty
As early as 1994 on the basis of epidemiological studies by Wing and Gould (1979) and Ehlers and Gillberg (1993) it was apparent that autism in all its manifestations including the classic Kanner type and the Asperger type affected at least 91 in 10000. The National Autistic Society in the UK issued a fact sheet to that effect. The modern version is available on our website. In 15 years the figure for all autistic spectrum disorders in the UK has moved from 91 in 10000 to 116 in 10000 (Baird et al 2006) or around 1 per cent for the whole period.
So there is no need to invoke vaccines or any other environmental cause for a non-existent epidemic. That is not the same as denying an environmental contribution to autism. But it will have to be a subtle interaction that leads to autism in one identical twin and not another. Incidentally, Simon Baron-Cohen has been arguing for an environmental component to autism since at least 1993 when he co-authored the book Autism - the facts with Patrick Bolton. He also pointed out that
"Some studies have checked for more general psychological dfficulties in the twin that does not develop autism (such as language problems, mental handicap and reading difficulties), and these studies have found that such difficulties occur quite often. This suggests that what may be inherited is not autism but a range of psychological difficulties. About 10 - 15 per cent of brothers and sisters of children with autism also have these difficulties."
All of this is a world away from the anti-vaccine nonsense spouted by DAN and their acolytes.
"I bet that cheered up a lot of people with autistic kids."
Yeah, sometimes reality isn't pretty.
imagine the terror that these autistic victims must have felt as they met with violent deaths at the hands of parents and caregivers. Taken from This Way of Life.
Casey Albury (Age 17, died 1997)
Angelica Auriemma (Age 20, died 5 Dec. 2003)
Dale Bartolome (Age 27, died 29 July 2002)
Charles-Antoine Blais (Age 6, died Nov. 1996)
Eric Bland (Age 38, 2004)
Jeffrey Bogrett (Age 9, died 1 Dec. 1995)
Gabriel Britt (Age 6, died 3 March 2001)
Casey Collier (Age 17, died 21 Dec. 1993)
Maggie Caraballo (Age 38, died 20 Aug. 2003)
Jonathan Carey (Age 13, died February 2007)
Terrance Cottrell, Jr. (Age 8, died 22 Aug. 2003)
James Joseph Cummings, Jr. (Age 46, died 16 Nov. 1999)
Jason Dawes (Age 10, died Aug. 2003)
Christopher DeGroot (Age 19, died 19 May 2006)
Brahim Dukes (Age 18, died 29 Dec. 2001)
Marcus Fiesel (Age 3, died August 2006)
Lillian Leilani Gill (Age 4, died March 2002)
Matthew Goodman (Age 14, died 6 Feb. 2002)
Jim Helm (died 1998)
Stephanie Jobin (Age 13, died 17 June 1998)
Daniel Leubner (Age 13, died 4 Sept. 1999)
Katherine McCarron (Age 3, died 13 may 2006)
Patrick Markcrow (Age 36, died 29 March 2005)
Justin Malphus (Age 5, died 19 April 2000)
Charles Mancill (Age 24, died 13 Feb. 2002)
Sean Miles (Age 37, died 2 May 2006)
Abubakar Nadama (Age 5, died 23 Aug. 2005)
Mark Owens-Young-Rogan (Age 11, died 17 Sept. 2001)
Pierre Pasquiou (Age 10, died 28 Dec. 1998)
Tiffany Pinckney (Age 23, died 2 April 2005)
Michael Renner-Lewis (Age 15, died 25 Aug. 2003)
Nozomu Shinozaki (Age 22, died 25 Feb. 2003)
Craig Sorger (Age 12, died 15 Feb. 2003)
Ulysses Stable (Age 12, died 22 Nov. 2006)
Tanaka (Age 14, died 24 July 2002)
Matthew Vick (Age 23, died 25 May 2002)
Wayne Winter (Age 39, died 15 Jan. 2001)
Willie Wright (Age 15, died 4 March 2000)
@44, no it isn't, but the false promises and quackery of Jenny McCarthy and her ilk are no way to approach it.
Jen -- it's not that reality's always pretty, it's that painting autistic children as incipient murderers is not helpful to getting them the services they need. These children desperately need love, not fear, because only love can motivate their parents and the community enough to give them the help they need. Otherwise, if we scare enough people, lie to them enough, we'll be back to institutionalizing all autistics, and that, I think, would be a very sad outcome.
Imagine the terror that Trudy Steuernagel must have felt as she was being beaten to death by her 18 year old autistic son.
Thank god that non-autistic teens never, ever brutally murder their parents!
Missy Miss, #48
Thank God parents never abuse their teenage kids.
Alan Kellogg, #49 - Agreed!
(pardon my un-indicated sarcasm in previous comment)
Acutally it didn't. Here's what it stated:
Those "other artifacts" would be huge potential factors like massively increased awarness and diagnostic substitution.
Californiaâs Invisible Autism Epidemic
As an aspie who has her unique personality to thank for her life's success (peer pressure has no allure or effect on me, allowing me to truly improve my intellect as a young person when others were wasting the prime time to mold their brains), go fuck yourself. It's one thing to say that the spectrum has been hard on you, but another thing entirely to say that it's hell for all of us. I don't let Autism Speaks speak for me and neither will you. I wouldn't change it for the world, because I don't think I'd be doing anything with my life if I had been the type who had any inclination to need to be social. Neurodiversity makes my life easier because it allows people to understand that when I do have problems that it is only the downside to some wonderful things about me. It lessens the stigma because it makes people see me as a person rather than as a disease. I hope that your life works out better for you in the future, but please stop assuming that your experience is the only legitimate one and that anyone who says otherwise must be deluded and doesn't understand what ASDs are 'really' like. We exist as much as you do.
Y'know, I do read Marguerite Kelly (the mother of the late Michael Kelly, who died in Iraq in 2003 covering the war) on a regular basis, and I've generally enjoyed her stuff. She's especially good, I think, at educating parents on what the age-appropriate behavior for their kids is in general. But I was appalled by the autism column from beginning to end. First of all, maybe I'm the only one who thinks this, but doesn't the "autistic" kid's behavior sound, well, not atypical for a two-year-old? Two is not necessarily an age of fluent verbal and physical communication, and it is often an age of tantrums. I'm not saying that the two-year-old described couldn't benefit from speech/communication therapy -- just that it seemed to me as though the letter-writer has either not spent much time around two-year-olds, or has primarily spent time around them when they're being well-behaved. I was shocked that Kelly didn't pick up on this, but instead went straight to the autism consideration. It almost read to me as though she'd been looking for a way to get out this "message" about autism. Sad. This is going to color how I see her entire body of work from now on.
About two weeks ago the truth about autism hit home. I received a call from my daughter's teacher about one of my daughter's classmates whom I'll call S. S didn't look like my daughter, K, but her mannerisms were almost identical. S was two years younger than K and both were severely autistic. The phone call was to inform me that S had drowned in the family pool. S was 10 years, her parents were away and left her with a 19 year-old who had sat S for about 3 years.
The parents and sitter are heartbroken. Anyone with a severely autistic child knows how fortunate one has been not to have had something similar happen. Just yesterday, my wife took her eyes off of K for an instant at Target. She vanished and would not come when called. The store called a code yellow and it took about 15 minutes to find her in another section of the store. She could of just as easily wandered out of it.
So please do tell the parents of S that autism is nothing to be frightened of. Autism killed their daughter.
K returns to school tomorrow. I doubt she'll notice S's absence even though they sat next to each other. About 3 months ago, we had to have the family dog put down due to a brain tumor, and now her classmate has drowned. We didn't spend much time explaining these to K, Death is something of which she has no concept. So perhaps one can add as a benefit of autism the lack of grief over losing a pet and a schoolmate.
There are those who profit from the wishes and prayers parents have for their children to lead a normal life, many them fully believing in the unproven and disproved hypothesis and tonics they sell. There are also those who seem to want to make light of the condition. S is beyond help, but we need sound research to help those like my daughter, and if that research were to help people like Jonathan instead, it would be money well spent.
Bronze Doggerel is
yours? - I am definitely going to use it when ever I hear that sort of crap.
I really don't mean to dismiss autism or the tragedies mentioned by some commenters here, but do those commenters believe that only autistic children drown or kill somebody? If so, they have a very strange view of the world.
Wren, nobody believes only autistic children drown. However autism is a developmental disorder which causes signifiant delays. Thus while an NT child's chance of drowning under the same circumstances drop significantly as the child ages. They do not do so for someone who is severely autistic. If S had been a toddler, your comment would have weight. She was 10 years-old, but in many ways with a toddler's mind. Autism is at the core of S's death.
Ian,
the child you mention lived in a protective environment and when that protection fails tragedy may ensue. Most children are not given that level of protection and are exposed to all sorts of risks that may also result in tragedy.
This report from the BBC concerns the death by drowning of a ten year old playing with his mates down by the river.
There is a perception that autistic children are more at risk from drowning than non-autistic children but very little evidence. I have seen one study from the UK that counted 104 drownings amongst UK children in 1998/99, 3 of whom were autistic. This proportion is higher than expected but still a very small number. I do not believe it is possible to generalize about autism on the basis of such a limited number of personal tragedies. We ought to be grateful that such incidents are so few in number that it is difficult to generate reliable data sets.
"I bet that cheered up a lot of people with autistic kids."
"Yeah, sometimes reality isn't pretty."
Jen, if you wanted to convince any of us that autistic children were more likely to kill and maim their parents than other kids you would have to provide a lot more than a few anecdotes. Hell there have been lots of kids that do these things to their parents.
Autistic kids deserve help and respect, not vilification.
Mike, a study was published in 2001 on autism mortality. Here is the synopsis:
"The objective of this study was to determine which causes of death are more frequent in per-
sons with autism, and by how much, compared with the general population. Subjects were
13,111 ambulatory Californians with autism, followed between 1983 and 1997. The units of
study were person-years, each linked to the subjectâs age, sex, and cause of death (if any) for
the specific year. Observed numbers of cause-specific deaths were compared with numbers
expected according to general population mortality rates. Standardized mortality rates (SMRs)
were computed for each mental retardation level. Elevated death rates were observed for sev-
eral causes, including seizures and accidents such as suffocation and drowning; elevated mor-
tality due to respiratory disease was observed among persons with severe mental retardation.
Overall, excess mortality was especially marked for persons with severe mental retardation,
but life expectancy is reduced even for persons who are fully ambulatory and who have only
mild mental retardation."
=====================================================
You are correct, S lived in a loving environment and her protection broke down. It's difficult to always be keenly vigilant for years. As my daughter is so much like S and knowing that even a second of distraction can lead to tragedy, we are extremely thankful such tragedy has not struck our household.
My mother, who is 86, is having some heart problems. While K was in camp we went down to see my parents, and enjoy sometime together. We had just finished a great day at Disneyland, when I received a call from the camp. It seemed K had snuck into the kitchen for a minute or so was eating ground coffee by the handful. The nurse was able to open her mouth and remove a couple of tablespoons, but no one was sure how much she had eaten. The camp called Poison Control, and were instructed to call 911. They then called us. We rushed back to my parents house and then headed up I 5 to the bay area expecting to get to the hospital in the wee hours of the next morning. We were near the top of the grapevine when the hospital called telling us that she was fine and resting comfortably.
She has attended camps there for the past four years, and she returned there from the hospital. The person who left the coffee out underwent extra training.
We don't live our lives thinking our daughter could meet some tragic end at any second. We have the house baby-proofed for a 12 year-old, but each year that becomes harder to do and even now is quite imperfect. Again we know how lucky we are that when we have relaxed our guard tragedy has not followed.
About six months ago, I found out (at the age of 34) that there were such things as anti-disabled hate crimes. Judging by the comments in this thread, I can see why. (I'm permanently dyspraxic -- "plays well with Aspies" -- care to put me in preventive detention, guys?)
Bronze Dog -- "Nostalgia is the destruction of history" is brilliant. There's a book title lurking in there somewhere.
Ian, it's very true that raising an autistic child is challenging in ways that raising a normal child is not. (This is not to say that raising a normal child is easy, and I'm not really sure whether either is really easier. Certainly there are better social supports for raising a normal child; our society is built up around the assumption that most people are normal, after all, which, to be fair, isn't unreasonable. Just hard on those who aren't normal, like autistic kids.)
What we're arguing against isn't the notion that autistic children have challenges. They certainly do. There are kids who will never live independently because of their condition.
Kim Peek is a famous savant. He does not have autism; he has different developmental delays which are broadly similar to but not identical to autism. He is famous because he was the primary inspiration for Dustin Hoffman's portrayal of the title character in Rain Man. He has an eidetic memory and can calculate at an astonishing speed. However, his developmental delays mean that he is unable to live on his own. He is 57 years old, but still lives with his father. He scores poorly on general IQ tests. He cannot dress himself, or brush his own teeth, and although his fame since Rain Man has given him the self confidence needed to greatly improve his social skills, he will always need someone to look after him.
That's a huge challenge for any parent, and while Peek isn't autistic (his condition is the result of macrocephaly), the challenges faced by his father are a window into what many parents of autistic children will face. Not all. Most autistic children will grow up to be able to live partially or fully independently. Another savant, this one with Asperger's, is Daniel Tammet. He is also able to calculate prodigiously, has an intuitive grasp of whether or not a very large number is prime (he's synaesthetic, and says that prime numbers have a different texture compared to other numbers), has an astonishing recall ability, and can learn languages extremely fast. (For a publicity stunt, he learned Icelandic, a famously opaque language, in just one week.) He is what many would term a "high functioning autistic", since he is able to live independently and holds a successful career in software.
So I think everybody in this thread is well aware that some autistic people are going to need life-long services. What they are objecting to is the implication that *all* (or even most) autistic children will need life-long services.
It is sad that parents fear this. Their fear is not unreasonable. But it shouldn't be feared. If our society really cared about the disabled, we would be providing services so that parents wouldn't have to fear this. They'd know that it would be a different path than the one they originally planned, but at least they'd know they could manage it. It's very sad that in this country, you only get mental health services if you're wealthy enough to pay for them. It's getting better; special ed services in the schools have been the salvation for a lot of kids. But those services end when the kids graduate, and parents don't have a lot of choices at that point.
Sad story here in Minnesota:
We have this outfit, called Zumbro Houses, which provides housing and round-the-clock care in a home-like setting for mentally disabled or behaviorally disturbed teens and adults. This is one of the places that can provide (for a fee) a compassionate solution for parents with a severely autistic child who is becoming violent, without having to institutionalize the child. One house in a suburban neighborhood was donated to the program, and the service was very excited about getting a bunch of kids moved in.
Then someone in the neighborhood looked at the website for Zumbro Houses, and read that some of their clients have problems understanding what is appropriate sexually, made the leap to concluding that these were all juvenile predatory sex offenders, and soon community sentiment was severely raised against the project. The owner of the company appeared at a city council meeting, planning to address neighbor's concerns, but was unprepared for the level of hostility he would meet. He became afraid for the safety of his clients, and decided to withdraw from the neighborhood.
This is because people are afraid of the mentally disabled. So afraid that even being in the same neighborhood is unthinkable, even though these people will be under constant supervision, even though these people may not even have those problems at all. They've been tarred with the same brush.
It is very tragic that autism is a feared diagnosis, but it is true all the same.
Calli, there are several longitudinal studies most speak of poor outcomes. One interesting one is
Asperger Syndrome and Autism: A Comparative Longitudinal Follow-Up Study More than 5 Years after Original Diagnosis
Mats Cederlund, Bibbi Hagberg, Eva Billstedt, I. Carina Gillberg and Christopher Gillberg
Published in JADD January 2008. I have not mentioned it because it has the worst result. It definitely does not.
Abstract Prospective follow-up study of 70 males with Asperger syndrome (AS), and 70 males with autism more than 5 years after original diagnosis. Instruments used at follow-up included overall clinical assessment, the Diagnostic Interview for Social and Communication Disorders, Wechsler Intelligence Scales, Vineland Adaptive Behavior Scales, and Global Assessment of Functioning Scale. Specific outcome criteria were used. Outcome in AS was good in 27% of cases. However, 26% had a very restricted life, with no occupation/activity and no friends. Outcome in the autism group was significantly worse. Males with AS had worse outcomes than expected given normal to high IQ. However, outcome was considerably better than for the comparison group of individuals with autism.
You know, I think military mom has a point...to a point.
It seems pretty common to see kids on the street just having hissy-fits while their mum tries to logic out with them and *reason* with them why they can't have a cupcake or an expensive toy. (Hint: You do not reason with a screaming child. You are not their friend. You are their parent. Take them to the car and make them sit there until they can calm down.)
Psychology is often a reflection on societal mores, and history bears this out. We don't have hysterical, constantly fainting women anymore, and it's probably because attitudes towards female sexuality have changed a lot since the Victorian period, when we did. Hysteria as a mental disorder simply doesn't happen anymore. After the black plague, a phenomenon was seen across Europe where people would join mobs and dance until they had a heart attack. This occurred in Germanic eras and in Italy almost simultaneously. We don't have "dancing plague" anymore, either. But we do have PTSD.
I think its definitely worth studying if and how societal attitudes towards the role of a parent propel and shape the biological mechanisms behind autism. Where I disagree with military mom is that its definitely a lot deeper than "spanks against autism."
@scrabcake: "Hysteria as a mental disorder simply doesn't happen anymore. "
No - because we renamed it "borderline personality". Then there was too much of that - and too much negative feeling attached to it - so we have the rise of "complex PTSD".
Yes, social changes affect how distress (or even a major disorder) is expressed - and yes, can affect the degree of significant stress/distress within the population as well (just look at Durkheim's work on the social aspects of suicide).
As a psychiatrist who at one stage was pretty set on working in the child field, and had/has a great interest in autistic spectrum disorders, I've found a few posted comments here quite unpleasant. I'd just simply like to echo those who've reinforced Orac's original message, and who've pointed out that it is not only people with autistic spectrum disorders who do dreadful things, or do not succeed in life. I would hope we can avoid demonising autism at the same time as we don't make light of it.
Serious disorder? Yes, especially in severe cases (I might point out that I worked at one stage in a forensic unit, and about 20% of my patients there had diagnosable pervasive developmental disorders - usually in addition to another major psychiatric illness, so I have definitely seen the darker side of these disorders). Cause for scare-mongering/ignoring evidence/chasing false promise of non-existent cures? Definitely, emphatically, no. That helps no-one except those lining their pockets or validating their own emptiness. It certainly is not what children with PDDs deserve.
Gosh, we're going to need some more crosses to hang Autism Parents on.
In the 1950's, a boy in my mother's neighborhood was hanged to death on a clothesline by some other boys. They were playing.
Imagine the Autism Parent at the wake: Well, at least your son was NORMAL. At least he had 8 NORMAL years. At least you haven't had to struggle with an autistic child. Count yourself lucky, honeybuns. *pat, pat*
Autism Parents--
Is having an autistic child worse than having a child with Down's?
My grandmother raised a Down's child--my uncle--from the 1950's, and looked after him in her house until her death in 1989. He then moved into a group home. (Medicaid. The family did have assets but hid them, since Down's patients have higher incidence of some sorts of heart disorders and they wanted something in reserve for the time when he would need major medical care. State medicaid will draw down all assets to zero. And it IS slightly dickish of my family, but is fairly typical as well.)
Grandpa was disappointed that his son and namesake had Down's (although he later did have a "normal" son, if by normal you mean monetarily successful but also a raging dick). Grandma came off a farm in the Depression. She rolled up her sleeves and went to work. Even back then they had support services for Down's, including special diets, which she followed religiously. (It worked, too--unlike many younger people today with Down's, my uncle was never overweight.)
Raising a child with Down's can be very difficult. Some parents even do somewhat risky pregnancy tests to make sure their fetus is packing a full set of 'somes. Hey, it's natural economy.
But I don't think anyone would seriously suggest institutionalizing Down's children today. It's well understood and our society has come up with structures--like Special Ed--to help people with Down's achieve the best functioning possible.
There is no cure for Down's, but society accepts that.
My uncle is severely retarded. His IQ is below 80. He will never leave the group home. But I have met people with Down's who do hold down regular jobs. A range of outcomes.
Why should autism be met with hysteria?
Did that tiny study with 140 subjects control for co-morbidity?
*applauds* Thank you, not a gator. That's exactly what I've been trying to get at. While developmental delays of all kinds mean the child has certain challenges and may even require lifelong care, this does not mean that hysteria is appropriate. Never assume the worst when you get a diagnosis. Hope for the best, plan for the worst, but assume nothing; let the child show you what he or she is capable of. Fear will only cloud that.
It is natural to be afraid when you get a diagnosis like this, because it's a fear of the unknown. You fear the worst-case scenario, and when you're a parent, the mind is particularly good at pulling up worst-case scenarios. But I honestly believe that if we had better social supports for families in this country, it wouldn't be so frightening.
The incidence of autism is about 1%. The incidence of Schizophrenia is about... 1%. Where are the claims of an epidemic of schizophrenia? Oh, right, there are none, and most people don't even give them much thought, because they don't really notice people like that, expect to stay away from them.
Knwo what has a higher incidence than autism, has terrible outcomes and is 100% preventable? Fetal Alcohol Spectrum Disroders. While many people affected are the children of alcoholics, many are also the children of women who were told that alcohol during pregnancy is perfectly safe. Can you imagine the difference it would make in the world if we put a fraction of the money that groups like GR get towards raising awareness of the not drinking while pregnant?
Does anyone here know whether children with FAS are sometimes given an ASD diagnosis? I have seen at least one mother on an ASD forum refer to her child as autistic, when there was known significant drug and alcohol use by the birth mother throughout the pregnancy. She seemed to see the FAS label as shameful.
I just wonder if your socioeconomic status and ethnicity play a part in diagnosis or special-ed classification. If you are a white and college-educated mother, do they look at whether it might be FAS? If you are a visible minority, do they assume it's FAS?
Unfortunately, this is almost certainly the case. I'm stunned again and again at the ineptitude of most journalists. I think getting a job like this has more to do with "paying your dues" than any kind of skill or education.
Regarding the whole autism "epidemic" debate that appears to be raging in the comments here... Let me attempt to assert a few sentences which I think ought to be uncontroversial:
1) It is abundantly clear that at least some1 of the apparent increase is due to increased diagnosis and diagnostic substitution. If you don't believe this, try reading up on the history of Asperger's.
2) It is not entirely clear whether or not all of the apparent increase can be explained by #1. There have been some intriguing studies suggesting the answer is yes, and some intriguing studies suggesting the answer is no. All of them have limitations.
3) Given 1 and 2, it is understandable and appropriate that identifying the cause of the apparent increase -- whether it eventually turns out to be purely diagnostic, or also due to one or more environmental factors -- remains an active area of research.
4) If a particular environmental factor is hypothesized to be the cause of the apparent increase, but follow-up research shows this to be highly unlikely, then it is not productive to continue to consider that hypothesis, as long as more likely alternative hypotheses remain. I'm looking at you, mercury.
5) Moreover, it is also not productive to just randomly pick a phenomenon that has a vague correlation with the apparent increase is autism diagnoses, and then trumpet it as a likely cause, demanding millions of dollars of research before we accept the need to look elsewhere. At this point in time, research into the possible causes of autism should be focused on those things for which we can posit a plausible mechanism.
So... maybe there's an autism "epidemic", maybe there isn't. And regardless of how that turns out, we are still quite justified in ridiculing Jenny McCarthy and her ilk.
@ grenouille: yes FAS and ASD have some similarities in terms of behavioural problems, at any rate, but they are quite distinct - and FAS has a bunch of physical characteristics that ASD don't share. Anyone working with ASD should as a matter of course enquire about maternal alcohol consumption during pregnancy - just as they should look to exclude other related disorders as well.
... Often people don't tell you about their alcohol consumption even if asked, of course ...
tsuken - Yes and no. Fetal Alcohol Syndrome has notable facial features. Fetal Alcohol Effect and Alcohol-Related Neurological Damage don't. All together, these three disorders are considered Fetal Alcohol Spectrum Disorders. I've known of at least three kids who were diagnosed with autism before a FASD was confirmed. And I know of a kid with both a FASD and ASD.
There's a great chart that shows the overlap at http://www.fasaware.co.uk/education_docs/Overlapping_Characteristics.pdf.