Pharmaceutical Company Threatens Blogger

Boiron, a multinational pharmaceutical company, have threatened an Italian blogger with legal action, the BMJ reports.



Many people are concerned when big pharmaceutical companies do this kind of thing. So I don't think we should make any exception merely because Boiron's pharmaceuticals happen to be homeopathic ones.



Samuel Riva, who blogs (in Italian) at blogzero.it, put up some articles critical of homeopathy

which included pictures of Boiron’s blockbuster homoeopathic product Oscillococcinum, marketed as a remedy against flu symptoms. The pictures were accompanied by captions, which joked about the total absence of any active molecules in homoeopathic preparations

Boiron wrote to Riva's internet provider threatening legal action, if the offending references to Boiron weren't taken down. They also wanted them to lock Riva out of his blog, the BMJ says. In response Riva removed the references to Boiron, including the pictures and captions, but kept the posts on homeopathy in general.



Hmmm.



Above you can see a new picture I made of a Boiron product, with some captions you may find interesting. I've made sure to limit these to quotes from Wikipedia, and from Boiron USA's own website, and some simple mathematical calculations.



Beyond that, I make no comment whatsoever.



Turone F (2011). Homoeopathy multinational Boiron threatens amateur Italian blogger. BMJ (Clinical research ed.), 343 PMID: 21840920

Pharmaceutical Company Threatens Blogger

Boiron, a multinational pharmaceutical company, have threatened an Italian blogger with legal action, the BMJ reports.



Many people are concerned when big pharmaceutical companies do this kind of thing. So I don't think we should make any exception merely because Boiron's pharmaceuticals happen to be homeopathic ones.



Samuel Riva, who blogs (in Italian) at blogzero.it, put up some articles critical of homeopathy

which included pictures of Boiron’s blockbuster homoeopathic product Oscillococcinum, marketed as a remedy against flu symptoms. The pictures were accompanied by captions, which joked about the total absence of any active molecules in homoeopathic preparations

Boiron wrote to Riva's internet provider threatening legal action, if the offending references to Boiron weren't taken down. They also wanted them to lock Riva out of his blog, the BMJ says. In response Riva removed the references to Boiron, including the pictures and captions, but kept the posts on homeopathy in general.



Hmmm.



Above you can see a new picture I made of a Boiron product, with some captions you may find interesting. I've made sure to limit these to quotes from Wikipedia, and from Boiron USA's own website, and some simple mathematical calculations.



Beyond that, I make no comment whatsoever.



Turone F (2011). Homoeopathy multinational Boiron threatens amateur Italian blogger. BMJ (Clinical research ed.), 343 PMID: 21840920

A Ghostwriter Speaks

PLoS ONE offers the confessions of a former medical ghostwriter: Being the Ghost in the Machine.





The article (which is open access and short, so well worth a read) explains how Linda Logdberg became a medical writer; what excited her about the job; what she actually did; and what made her eventually give it up.



Ghostwriting of course has a bad press at the moment and it's recently been banned by some leading research centres. Ghostwriting certainly is concerning, because of what it implies about the process leading up the publication.



However, it doesn't create bad science. A bad paper is bad because of what it says, not because of who (ghost)wrote it. Real scientists can write bad papers without a ghostwriter's help.



When pharmaceutical companies pay a ghostwriter, they are not doing this to get access to special dark arts that real scientists are innocent of. As far as I can see, it's just more efficient to use a specialist writer to do your scientific sins, when you're doing it all the time.



Rather like every evil sorcerer has an apprentice to do the day-to-day work of sacrificing animals and mixing potions.



Logdberg says:

My career came to an end over a job involving revising a manuscript supporting the use of a drug for attention deficit-hyperactivity disorder (ADHD), with a duration of action that fell between that of shorter- and longer-acting formulations.



However, I have two children with ADHD, and I failed to see the benefit of a drug that would wear off right at suppertime, rather than a few hours before or a few hours after. Suppertime is a time in ADHD households when tempers and homework arguments are often at their worst.



...Attempts to discuss my misgivings with the [medical] contact met with the curt admonition to ‘‘just write it.’’ But perhaps because this particular disorder was so close to home, I was unwilling to turn this ugly duckling of a ‘‘me-too’’ drug into a marketable swan.

Many scientists will recall being in that kind of situation, albeit in a different context.



When writing a grant application, for example, you are almost literally trying to sell your proposed research to the awarding committee, on several levels. You need to sell the importance of the scientific question; the likely practical benefits of the research; the chance of success using your methods; what makes you the right person to do this work, and so on.



Writing a paper is much the same, although in this case you're selling research you've already done, and the data you collected.



Turning ugly ducklings into fundable, or publishable, swans, is part and parcel of modern science. Of course, the ducklings are not always as ugly as in the case Logdberg describes, but they are rarely as beautiful as they eventually end up.



Logdberg, L. (2011). Being the Ghost in the Machine: A Medical Ghostwriter's Personal View PLoS Medicine, 8 (8) DOI: 10.1371/journal.pmed.1001071

A Ghostwriter Speaks

PLoS ONE offers the confessions of a former medical ghostwriter: Being the Ghost in the Machine.





The article (which is open access and short, so well worth a read) explains how Linda Logdberg became a medical writer; what excited her about the job; what she actually did; and what made her eventually give it up.



Ghostwriting of course has a bad press at the moment and it's recently been banned by some leading research centres. Ghostwriting certainly is concerning, because of what it implies about the process leading up the publication.



However, it doesn't create bad science. A bad paper is bad because of what it says, not because of who (ghost)wrote it. Real scientists can write bad papers without a ghostwriter's help.



When pharmaceutical companies pay a ghostwriter, they are not doing this to get access to special dark arts that real scientists are innocent of. As far as I can see, it's just more efficient to use a specialist writer to do your scientific sins, when you're doing it all the time.



Rather like every evil sorcerer has an apprentice to do the day-to-day work of sacrificing animals and mixing potions.



Logdberg says:

My career came to an end over a job involving revising a manuscript supporting the use of a drug for attention deficit-hyperactivity disorder (ADHD), with a duration of action that fell between that of shorter- and longer-acting formulations.



However, I have two children with ADHD, and I failed to see the benefit of a drug that would wear off right at suppertime, rather than a few hours before or a few hours after. Suppertime is a time in ADHD households when tempers and homework arguments are often at their worst.



...Attempts to discuss my misgivings with the [medical] contact met with the curt admonition to ‘‘just write it.’’ But perhaps because this particular disorder was so close to home, I was unwilling to turn this ugly duckling of a ‘‘me-too’’ drug into a marketable swan.

Many scientists will recall being in that kind of situation, albeit in a different context.



When writing a grant application, for example, you are almost literally trying to sell your proposed research to the awarding committee, on several levels. You need to sell the importance of the scientific question; the likely practical benefits of the research; the chance of success using your methods; what makes you the right person to do this work, and so on.



Writing a paper is much the same, although in this case you're selling research you've already done, and the data you collected.



Turning ugly ducklings into fundable, or publishable, swans, is part and parcel of modern science. Of course, the ducklings are not always as ugly as in the case Logdberg describes, but they are rarely as beautiful as they eventually end up.



Logdberg, L. (2011). Being the Ghost in the Machine: A Medical Ghostwriter's Personal View PLoS Medicine, 8 (8) DOI: 10.1371/journal.pmed.1001071

Do We Need Placebos?

A news feature in Nature asks whether placebo controls are always a good idea: Why Fake It?



The piece looks at experimental neurosurgical treatments for Parkinson's, such as "Spheramine". This consists of cultured human cells, which are implanted directly into the brain of the sufferer. The idea is that the cells will grow and help produce dopamine, which is deficient in Parkinson's.



Peggy Willocks, a 44 year old teacher, took part in a trial of the surgery in 2000. She says it helped stave off the symptoms for years, but the development of Spheramine was axed in 2008 after a controlled trial found it didn't work any better than a placebo.



The placebo was "sham surgery" i.e. putting the patient through a full surgical procedure, and making holes in their skull, but without doing anything to their brain.



It's cheap and easy to do a placebo controlled trial of a drug - all you need is a sugar pill. But with neurosurgery, it's clearly a lot more involved. A placebo has to be believable. Convincing sham surgery is expensive, time-consuming, and it has real risks, albeit small ones.



Is it ethical to put patients through that?



That, I think, can only be decided on a trial-by-trial basis. It depends on the likely benefits of the treatment, and whether the trial is scientifically sound. Obviously, it'd be wrong to do sham surgery as part of a flawed trial that won't tell us anything useful.



The Nature article, however, goes further than this, and suggests that placebo controlled trials may be unsuitable for testing these kinds of treatments, failing to detect a real benefit in some patients:

There are hints from some of the failed phase II trials that patients followed up beyond study endpoints might tell a more positive story. Some say, therefore, that sham controls are sinking the prospects of valuable drugs.



Anders Björklund, a neuroscientist at Lund University in Sweden who is collaborating with [Roger Barker of Cambridge], says that sham surgery can lead researchers to throw out a strategy prematurely if the trial fails because of technical or methodological glitches rather than a true lack of efficacy.

A patient advocate agrees:

According to Perry Cohen, who leads a network of patient activists called the Parkinson Pipeline Project, that’s exactly what is happening. He had always questioned the need for sham surgery, he says, but after the string of phase II failures, “We started saying, ‘Hey, this is a problem. These trials failed, but we know they are working for some people.’”

...Cohen [says] that patients have different priorities and that researchers must take these into account. Researchers use placebo controls to weed out false positives. But for patients, the real ogre is the false negatives — which can sink a therapy before it has been optimized.

I'm not sure about this. If I had Parkinson's, I would certainly hate to miss out on the genuine cure because a trial had failed to recognize that it worked. But equally, I would not be happy to be given a rubbish treatment that would have failed a placebo controlled trial, but never got one, because of arguments like this.



Placebo controlled trials can fail to detect benefits if they are too short, too small, methodologically flawed, or whatever. Certainly, a trial can be placebo controlled, and still crap. But the answer is surely to do better trials, not no trials.



It may well be that we shouldn't rush to do placebo controlled trials until later in the development process, when the technique has been properly refined. But the history of medicine is littered with treatments that "we know work for some people" - that didn't.



Katsnelson, A. (2011). Experimental therapies for Parkinson's disease: Why fake it? Nature, 476 (7359), 142-144 DOI: 10.1038/476142a

Do We Need Placebos?

A news feature in Nature asks whether placebo controls are always a good idea: Why Fake It?



The piece looks at experimental neurosurgical treatments for Parkinson's, such as "Spheramine". This consists of cultured human cells, which are implanted directly into the brain of the sufferer. The idea is that the cells will grow and help produce dopamine, which is deficient in Parkinson's.



Peggy Willocks, a 44 year old teacher, took part in a trial of the surgery in 2000. She says it helped stave off the symptoms for years, but the development of Spheramine was axed in 2008 after a controlled trial found it didn't work any better than a placebo.



The placebo was "sham surgery" i.e. putting the patient through a full surgical procedure, and making holes in their skull, but without doing anything to their brain.



It's cheap and easy to do a placebo controlled trial of a drug - all you need is a sugar pill. But with neurosurgery, it's clearly a lot more involved. A placebo has to be believable. Convincing sham surgery is expensive, time-consuming, and it has real risks, albeit small ones.



Is it ethical to put patients through that?



That, I think, can only be decided on a trial-by-trial basis. It depends on the likely benefits of the treatment, and whether the trial is scientifically sound. Obviously, it'd be wrong to do sham surgery as part of a flawed trial that won't tell us anything useful.



The Nature article, however, goes further than this, and suggests that placebo controlled trials may be unsuitable for testing these kinds of treatments, failing to detect a real benefit in some patients:

There are hints from some of the failed phase II trials that patients followed up beyond study endpoints might tell a more positive story. Some say, therefore, that sham controls are sinking the prospects of valuable drugs.



Anders Björklund, a neuroscientist at Lund University in Sweden who is collaborating with [Roger Barker of Cambridge], says that sham surgery can lead researchers to throw out a strategy prematurely if the trial fails because of technical or methodological glitches rather than a true lack of efficacy.

A patient advocate agrees:

According to Perry Cohen, who leads a network of patient activists called the Parkinson Pipeline Project, that’s exactly what is happening. He had always questioned the need for sham surgery, he says, but after the string of phase II failures, “We started saying, ‘Hey, this is a problem. These trials failed, but we know they are working for some people.’”

...Cohen [says] that patients have different priorities and that researchers must take these into account. Researchers use placebo controls to weed out false positives. But for patients, the real ogre is the false negatives — which can sink a therapy before it has been optimized.

I'm not sure about this. If I had Parkinson's, I would certainly hate to miss out on the genuine cure because a trial had failed to recognize that it worked. But equally, I would not be happy to be given a rubbish treatment that would have failed a placebo controlled trial, but never got one, because of arguments like this.



Placebo controlled trials can fail to detect benefits if they are too short, too small, methodologically flawed, or whatever. Certainly, a trial can be placebo controlled, and still crap. But the answer is surely to do better trials, not no trials.



It may well be that we shouldn't rush to do placebo controlled trials until later in the development process, when the technique has been properly refined. But the history of medicine is littered with treatments that "we know work for some people" - that didn't.



Katsnelson, A. (2011). Experimental therapies for Parkinson's disease: Why fake it? Nature, 476 (7359), 142-144 DOI: 10.1038/476142a

Vaccines Cause Autism, Until You Look At The Data

According to a much-discussed new paper, vaccines may cause autism after all: A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population.

The author is Gayle DeLong, who "teaches international finance at Baruch College, City University of New York", according to her profile as a board member of anti-vaccine group SafeMinds. She correlated rates of coverage of the government recommended full set of vaccines in the 51 US states including Washington D.C., with registered rates of autism in those states six years later.

Uh-oh - there was a correlation between vaccination in two year kids, and the rate of autism in the state six years later, when those kids were eight. As the abstract says:

The higher the proportion of children receiving recommended vaccinations, the higher was the prevalence of AUT... The results suggest that although mercury has been removed from many vaccines, other culprits may link vaccines to autism. Further study into the relationship between vaccines and autism is warranted.

Sounds rather scary. Until you look at the data, helpfully provided in the paper. First up, here's the scatterplot of all of the vaccination rates and all of the autism-six-years-later rates:

There's more than 51 data points as you can see: there's actually 355 because each state had seven different datapoints (1995 vaccines vs 2001 autism though to 2001 vs 2007). This scatterplot shows no correlation. You can tell just from looking at it, but the correlation coefficient confirms this, as it's a tiny r 0.012 (from a possible range of 0 to 1).

To be fair, that's a very noisy measure, because each state has unique characteristics, so the effect of vaccines will be diluted. However, it's still a useful sanity check, and shows that there can't be a major effect, otherwise it would be too big to get diluted.

To get around this I next looked at the change in the rates of vaccination from one year to the next, and correlated that with the corresponding change in future rates of autism, within each state. A "change" of 1 means no change, 0.5 means it halved and 2 means it doubled, etc.

Zilch. Correlation coeffiencent r is 0.034.

Maybe the changes year-to-year were too small? So I checked the changes between the last year, and the first year.

This made the changes bigger, because more tends to change over six years than in just one. And, to be fair, this does produces a slightly stronger vaccine-autism effect... but it's still tiny. The correlation coefficient here, r, is 0.18 which means that vaccination changes accounts for 3% of the variability in autism changes (r^2 = 0.034.) The p value is 0.20, statistically insignificant.

My conclusion is that this dataset shows no evidence of any association. The author nonetheless found one. How? By doing some statistical wizardry.

The statistical model used took into consideration the unique characteristics of each state. For example, each state had a unique mixture of pollution, which may have affected the prevalence of autism, yet such an effect was not included in this study. A fixed-effects, within-group panel regression (Hall and Cummins 2005) controlled for these unique yet undefined characteristics by deriving a different starting point (intercept) for each state.

The 51 different intercepts - one for each state - reflected the base level of autism or speech disorders occurring in that state that were not explained by the other independent variables (vaccination rates, income, or ethnicity). The model then produced a single relationship between the independent variables and the prevalence of autism or speech disorders.

OK, that's all very fancy, but when the raw data shows zilch and you can only find a signal by "controlling for" stuff, alarm bells start ringing. Given sufficient statistical analysis you can make any data say anything you want.

If the author had given details of the methods, and explained why she chose to control for the variables she did, and not others, that might be different. But she didn't. Nor did she justify only looking at the effects six years later, when five or seven or ten would be just as sensible... and so on.

(Note: whenever I've said "autism", that's my shorthand for autism + SLI, which is what the paper looked at; autism alone data are not presented. Note also that by "vaccination %" I mean "% who got the full vaccine schedule"; the other kids may have got vaccines, just not all of them.)

Delong G (2011). A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population. Journal of toxicology and environmental health. Part A, 74 (14), 903-16 PMID: 21623535

Vaccines Cause Autism, Until You Look At The Data

According to a much-discussed new paper, vaccines may cause autism after all: A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population.

The author is Gayle DeLong, who "teaches international finance at Baruch College, City University of New York", according to her profile as a board member of anti-vaccine group SafeMinds. She correlated rates of coverage of the government recommended full set of vaccines in the 51 US states including Washington D.C., with registered rates of autism in those states six years later.

Uh-oh - there was a correlation between vaccination in two year kids, and the rate of autism in the state six years later, when those kids were eight. As the abstract says:

The higher the proportion of children receiving recommended vaccinations, the higher was the prevalence of AUT... The results suggest that although mercury has been removed from many vaccines, other culprits may link vaccines to autism. Further study into the relationship between vaccines and autism is warranted.

Sounds rather scary. Until you look at the data, helpfully provided in the paper. First up, here's the scatterplot of all of the vaccination rates and all of the autism-six-years-later rates:

There's more than 51 data points as you can see: there's actually 355 because each state had seven different datapoints (1995 vaccines vs 2001 autism though to 2001 vs 2007). This scatterplot shows no correlation. You can tell just from looking at it, but the correlation coefficient confirms this, as it's a tiny r 0.012 (from a possible range of 0 to 1).

To be fair, that's a very noisy measure, because each state has unique characteristics, so the effect of vaccines will be diluted. However, it's still a useful sanity check, and shows that there can't be a major effect, otherwise it would be too big to get diluted.

To get around this I next looked at the change in the rates of vaccination from one year to the next, and correlated that with the corresponding change in future rates of autism, within each state. A "change" of 1 means no change, 0.5 means it halved and 2 means it doubled, etc.

Zilch. Correlation coeffiencent r is 0.034.

Maybe the changes year-to-year were too small? So I checked the changes between the last year, and the first year.

This made the changes bigger, because more tends to change over six years than in just one. And, to be fair, this does produces a slightly stronger vaccine-autism effect... but it's still tiny. The correlation coefficient here, r, is 0.18 which means that vaccination changes accounts for 3% of the variability in autism changes (r^2 = 0.034.) The p value is 0.20, statistically insignificant.

My conclusion is that this dataset shows no evidence of any association. The author nonetheless found one. How? By doing some statistical wizardry.

The statistical model used took into consideration the unique characteristics of each state. For example, each state had a unique mixture of pollution, which may have affected the prevalence of autism, yet such an effect was not included in this study. A fixed-effects, within-group panel regression (Hall and Cummins 2005) controlled for these unique yet undefined characteristics by deriving a different starting point (intercept) for each state.

The 51 different intercepts - one for each state - reflected the base level of autism or speech disorders occurring in that state that were not explained by the other independent variables (vaccination rates, income, or ethnicity). The model then produced a single relationship between the independent variables and the prevalence of autism or speech disorders.

OK, that's all very fancy, but when the raw data shows zilch and you can only find a signal by "controlling for" stuff, alarm bells start ringing. Given sufficient statistical analysis you can make any data say anything you want.

If the author had given details of the methods, and explained why she chose to control for the variables she did, and not others, that might be different. But she didn't. Nor did she justify only looking at the effects six years later, when five or seven or ten would be just as sensible... and so on.

(Note: whenever I've said "autism", that's my shorthand for autism + SLI, which is what the paper looked at; autism alone data are not presented. Note also that by "vaccination %" I mean "% who got the full vaccine schedule"; the other kids may have got vaccines, just not all of them.)

Delong G (2011). A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population. Journal of toxicology and environmental health. Part A, 74 (14), 903-16 PMID: 21623535

Who Gets Autism?

According to a major new report from Australia, social and family factors associated with autism are associated with a lower risk of intellectual disability - and vice versa. But why?


The paper is from Leonard et al and it's published in PLoS ONE, so it's open access if you want to take a peek. The authors used a database system in the state of Western Australia which allowed them to find out what happened to all of the babies born between 1984 and 1999 who were still alive as of 2005. There were 400,000 of them.

The records included information on children diagnosed with either an autism spectrum disorder (ASD), intellectual disability aka mental retardation (ID), or both. They decided to only look at singleton births i.e. not twins or triplets.

In total, 1,179 of the kids had a diagnosis of ASD. That's 0.3% or about 1 in 350, much lower than more recent estimates, but these more recent studies used very different methods. Just over 60% of these also had ID, which corresponds well to previous estimates.

There were about 4,500 cases of ID without ASD in the sample, a rate of just over 1%; the great majority of these (90%) had mild-to-moderate ID. They excluded an additional 800 kids with ID associated with a "known biomedical condition" like Down's Syndrome.

So what did they find? Well, a whole bunch, and it's all interesting. Bullet point time.

• Between 1984 to 1999, rates of ID without ASD fell and rates of ASD rose, although there was a curious sudden fall in the rates of ASD without ID just before the end of the study. In 1984, "mild-moderate ID" without autism was by far the most common diagnosis, with 10 times the rate of anything else. By 1999, it was exactly level with ASD+ID, and ASD without ID was close behind. Here's the graph; note the logarithmic scale:
  

• Boys had a much higher rate of autism than girls, especially when it came to autism without ID. This has been known for a long time.
  
• Second- and third- born children had a higher rate of ID, and a lower rate of ASD, compared to firstborns.
  
• Older mothers had children with more autism - both autism with and without ID, but the trend was bigger for autism with ID. But they had less ID. For fathers, the trend was the same and the effect was even bigger. Older parents are more likely to have autistic children but less likely to have kids with ID.
  

• Richer parents had a strongly reduced liklihood of ID. Rates of ASD with ID were completely flat, but rates of ASD without ID were raised in the richer groups, though it was not linear (the middle groups were highest. - and effect was small.)
  

To summarize: the risk factors for autism were in most cases the exact opposite of those for ID. The more “advantaged” parental traits like being richer, and being older, were associated with more autism, but less ID. And as time went on, diagnosed rates of ASD rose while rates of ID fell (though only slightly for severe ID).

Why is this? The simplest explanation would be that there are many children out there for whom it's not easy to determine whether they have ASD or ID. Which diagnosis any such child gets would then depend on cultural and sociological factors - broadly speaking, whether clinicians are willing to give (and parents willing to accept) one or the other.

The authors note that autism has become a less stigmatized condition in Australia recently. Nowdays, they say, a diagnosis of ASD may be preferable to a diagnosis of "just" "plain old" ID, in terms of access to financial support amongst other things. However, it is also harder to get a diagnosis of ASD, as it requires you to go through a more extensive and complex series of assessments.

Clearly some parents will be better able to achieve this than others. In other countries, like South Korea, autism is still one of the most stigmatized conditions of childhood, and we'd expect that there, the trend would be reversed.

The authors also note the theory that autism rates are rising because of some kind of environmental toxin causing brain damage, like mercury or vaccinations. However, as they point out, this would probably cause more of all neurological/behavioural disorders, including ID; at the least it wouldn't reduce the rates of any.

These data clearly show that rates of ID fell almost exactly in parallel with rates of ASD rising, in Western Australia over this 15 year period. What will the vaccine-vexed folks over at Age of Autism make of this study, one wonders?

Leonard H, Glasson E, Nassar N, Whitehouse A, Bebbington A, Bourke J, Jacoby P, Dixon G, Malacova E, Bower C, & Stanley F (2011). Autism and intellectual disability are differentially related to sociodemographic background at birth. PloS one, 6 (3) PMID: 21479223

Who Gets Autism?

According to a major new report from Australia, social and family factors associated with autism are associated with a lower risk of intellectual disability - and vice versa. But why?


The paper is from Leonard et al and it's published in PLoS ONE, so it's open access if you want to take a peek. The authors used a database system in the state of Western Australia which allowed them to find out what happened to all of the babies born between 1984 and 1999 who were still alive as of 2005. There were 400,000 of them.

The records included information on children diagnosed with either an autism spectrum disorder (ASD), intellectual disability aka mental retardation (ID), or both. They decided to only look at singleton births i.e. not twins or triplets.

In total, 1,179 of the kids had a diagnosis of ASD. That's 0.3% or about 1 in 350, much lower than more recent estimates, but these more recent studies used very different methods. Just over 60% of these also had ID, which corresponds well to previous estimates.

There were about 4,500 cases of ID without ASD in the sample, a rate of just over 1%; the great majority of these (90%) had mild-to-moderate ID. They excluded an additional 800 kids with ID associated with a "known biomedical condition" like Down's Syndrome.

So what did they find? Well, a whole bunch, and it's all interesting. Bullet point time.

• Between 1984 to 1999, rates of ID without ASD fell and rates of ASD rose, although there was a curious sudden fall in the rates of ASD without ID just before the end of the study. In 1984, "mild-moderate ID" without autism was by far the most common diagnosis, with 10 times the rate of anything else. By 1999, it was exactly level with ASD+ID, and ASD without ID was close behind. Here's the graph; note the logarithmic scale:
  

• Boys had a much higher rate of autism than girls, especially when it came to autism without ID. This has been known for a long time.
  
• Second- and third- born children had a higher rate of ID, and a lower rate of ASD, compared to firstborns.
  
• Older mothers had children with more autism - both autism with and without ID, but the trend was bigger for autism with ID. But they had less ID. For fathers, the trend was the same and the effect was even bigger. Older parents are more likely to have autistic children but less likely to have kids with ID.
  

• Richer parents had a strongly reduced liklihood of ID. Rates of ASD with ID were completely flat, but rates of ASD without ID were raised in the richer groups, though it was not linear (the middle groups were highest. - and effect was small.)
  

To summarize: the risk factors for autism were in most cases the exact opposite of those for ID. The more “advantaged” parental traits like being richer, and being older, were associated with more autism, but less ID. And as time went on, diagnosed rates of ASD rose while rates of ID fell (though only slightly for severe ID).

Why is this? The simplest explanation would be that there are many children out there for whom it's not easy to determine whether they have ASD or ID. Which diagnosis any such child gets would then depend on cultural and sociological factors - broadly speaking, whether clinicians are willing to give (and parents willing to accept) one or the other.

The authors note that autism has become a less stigmatized condition in Australia recently. Nowdays, they say, a diagnosis of ASD may be preferable to a diagnosis of "just" "plain old" ID, in terms of access to financial support amongst other things. However, it is also harder to get a diagnosis of ASD, as it requires you to go through a more extensive and complex series of assessments.

Clearly some parents will be better able to achieve this than others. In other countries, like South Korea, autism is still one of the most stigmatized conditions of childhood, and we'd expect that there, the trend would be reversed.

The authors also note the theory that autism rates are rising because of some kind of environmental toxin causing brain damage, like mercury or vaccinations. However, as they point out, this would probably cause more of all neurological/behavioural disorders, including ID; at the least it wouldn't reduce the rates of any.

These data clearly show that rates of ID fell almost exactly in parallel with rates of ASD rising, in Western Australia over this 15 year period. What will the vaccine-vexed folks over at Age of Autism make of this study, one wonders?

Leonard H, Glasson E, Nassar N, Whitehouse A, Bebbington A, Bourke J, Jacoby P, Dixon G, Malacova E, Bower C, & Stanley F (2011). Autism and intellectual disability are differentially related to sociodemographic background at birth. PloS one, 6 (3) PMID: 21479223

Herbs Are Not Your Friends

Rather than nasty artificial drugs, wouldn't it be nice if we could just take some herbs and get better? A lot of people think so. Indeed, a large proportion of our drugs and medicines come from plants, or are closely related to plant chemicals. There's aspirin, morphine, caffeine, cocaine, quinine, and many more. It's as if plants were going out of their way to help us.

In fact, it's more like the opposite. Most of these drugs are poisons, produced by the plant to stop animals (that means you) from eating them. As a plant, you don't want to get eaten, but being, well, rooted to the spot, you can't exactly run away. All you can do is to make animals not want to eat you. So you fill yourself with noxious, or at least nasty-tasting, chemicals.

By contrast, many plants do want their seeds to get swallowed (but not chewed) by animals and birds, because this ensures that they are spread over a wide area. So they wrap them in delicious, colourful packages. This is why, with only a few exceptions, fruit are sweet and safe while while plant leaves, roots and stems are unpleasant, and often toxic.

In fact, this is quite possibly why the taste of bitter is so unpleasant. Plant toxins are usually alkaloids. Animals must have evolved to find alkaloids nasty, because many of them are poisonous and you survive longer if you don't enjoy eating poison.

Caffeine, for example, is found in the seeds ("beans") of the coffee plant, and it makes them taste bitter, to deter herbivores. But those seeds are themselves wrapped in a fruit called the coffee cherry, which is apparently sweet and tasty, although most of them get thrown away in the production of coffee. Coffee wants you to eat the fruit, but swallow the seeds whole, and thereby help spread its DNA. Quinine is one of the bitterest substances on earth, and it's there to protect the bark of the tree. Nicotine is a bitter insecticide. And so on.

There are some plant chemicals which have medicinal effects which are entirely coincidental: St John's Wort for example contains some molecules with interesting effects on animals, which are probably quite unrelated to its role in the plant (it absorbs light). It's also true that plants contain lots of nutrients and the non-toxic ones are, by and large, "healthy" foods, compared to animal products. I say this as a vegetarian. But that doesn't mean that they cure anything.

So the idea that herbal medicines are "natural", and thereby safe, is completely backwards. They are natural; that doesn't make them safe; nature is red in tooth and claw and even the plants are out to get you.

Herbs Are Not Your Friends

Rather than nasty artificial drugs, wouldn't it be nice if we could just take some herbs and get better? A lot of people think so. Indeed, a large proportion of our drugs and medicines come from plants, or are closely related to plant chemicals. There's aspirin, morphine, caffeine, cocaine, quinine, and many more. It's as if plants were going out of their way to help us.

In fact, it's more like the opposite. Most of these drugs are poisons, produced by the plant to stop animals (that means you) from eating them. As a plant, you don't want to get eaten, but being, well, rooted to the spot, you can't exactly run away. All you can do is to make animals not want to eat you. So you fill yourself with noxious, or at least nasty-tasting, chemicals.

By contrast, many plants do want their seeds to get swallowed (but not chewed) by animals and birds, because this ensures that they are spread over a wide area. So they wrap them in delicious, colourful packages. This is why, with only a few exceptions, fruit are sweet and safe while while plant leaves, roots and stems are unpleasant, and often toxic.

In fact, this is quite possibly why the taste of bitter is so unpleasant. Plant toxins are usually alkaloids. Animals must have evolved to find alkaloids nasty, because many of them are poisonous and you survive longer if you don't enjoy eating poison.

Caffeine, for example, is found in the seeds ("beans") of the coffee plant, and it makes them taste bitter, to deter herbivores. But those seeds are themselves wrapped in a fruit called the coffee cherry, which is apparently sweet and tasty, although most of them get thrown away in the production of coffee. Coffee wants you to eat the fruit, but swallow the seeds whole, and thereby help spread its DNA. Quinine is one of the bitterest substances on earth, and it's there to protect the bark of the tree. Nicotine is a bitter insecticide. And so on.

There are some plant chemicals which have medicinal effects which are entirely coincidental: St John's Wort for example contains some molecules with interesting effects on animals, which are probably quite unrelated to its role in the plant (it absorbs light). It's also true that plants contain lots of nutrients and the non-toxic ones are, by and large, "healthy" foods, compared to animal products. I say this as a vegetarian. But that doesn't mean that they cure anything.

So the idea that herbal medicines are "natural", and thereby safe, is completely backwards. They are natural; that doesn't make them safe; nature is red in tooth and claw and even the plants are out to get you.

"Packing" Autistic Kids: A French Scandal

Back in the bad old days of autism they thought it was caused by "refrigerator mothers".


Well, right now, some psychiatrists have decided that the best treatment for autism is something not that far removed from sticking them in a refrigerator - literally. Enter "Le Packing", which is the target of an unprecedented consensus statement just out from a list of 18 big-name autism experts (available free here).

This alleged therapy consists of wrapping the patient (wearing only underclothes or naked in the case of young children) several times a week during weeks or months in towels soaked in cold water (10°C to 15°C). The individual is wrapped with blankets to help the body warm up in a process lasting 45 minutes, during which time the child or adolescent is accompanied by two to four staff persons.

The alleged goal of this technique is to “allow the child to rid him- or herself progressively of its pathological defense mechanisms against archaic anxieties,” by achieving “a greater perception and integration of the body, and a growing sense of containment.”

No, really. Frankly, they could have stopped there, because the description is condemnation enough, but they go on to write:

We have reached the consensus that practitioners and families around the world should consider this approach unethical. Furthermore, this “therapy” ignores current knowledge about autism spectrum disorders; goes against evidence-based practice...and, in our view, poses a risk of preventing these children and adolescents from accessing their basic human rights to health and education.

Le Packing, as the name suggests, originated in France, and its use seems to be confined to France and other French-speaking areas. This is the first I'd ever heard of it. Little has been written about it in English (though see this long article and this piece from 2007) so here's my loose translation of the the article on the French Wikipedia:

• Packing is used in children with autism, but also in others: psychotic adults (specifically when they're recovering from an acute psychotic episode), in the elderly, etc.
• It's intended to restore "awareness of the body image".
• It's extremely controversial. Well, duh.
• The technique was invented, in France, by a "controversial American psychiatrist" called M. A. Woodburry. It was intended for the treatment of severely autistic children and adolescents, especially those with severe behavioural problems such as self-harm, aggression, and refusal to eat.
• The patient is wrapped in towels covered in cold water: two towels for the torso, and one for each arm and leg. They're then additionally wrapped in a sheet and then blankets, over the towels. The cold water quickly warms up thanks to body heat: the child is never actually hypothermic.
• After this session, the child is "frictionné" (I guess this means massaged) and taken to their living quarters and offered a snack "in a friendly atmosphere".
• Le Packing is intended to recover a physical sense of their own body. It should be used as part of a wider package of care, and only with the consent of the patient's parents.
• The cold water is optional; some, e.g. a Dr A. Gillis, use warm water nowadays. The key point is the restraint, i.e. the fact that their attempts to move their body are restricted temporarily. Hence "le packing", huh.
  
• The scientific status of Le Packing is controversial. A group called "Léa pour Samy" say it should be banned, and replaced by the (much more orthodox) method of ABA. However, in 2007, authorities approved a randomized controlled trial led by a "Dr Goeb" of the CHU hospital in Lille.
• Critics accuse Le Packing of being an unethical, inhuman and degrading treatment, maybe even torture. There are allegations of cases in which the towels were much colder than 10°C, e.g. straight out of the freezer.
• There are also allegations of its use without parental consent. A Professor Pierre Delion, of the CHU in Lille, reportedly defended this in remarks to The Lancet "if a child is in danger following a road accident, you do not wait for the parents' agreement to give him a transfusion." But this is actually a misquote. In the Lancet piece, he was referring to the patient's consent and said parental consent was always sought.
  
• In 2009 a government minister told the French Senate that Le Packing should only be used under strictly controlled conditions according to a protocol - but others, e.g. the "Léa pour Samy" group, want it banned altogether.
  

This rather speaks for itself, but I'll say this. If someone is suffering these kinds of severe behavioural disturbances, the temptation to do something dramatic must be intense. Indeed, if someone's disturbed to the point of trying to mutilate themselves, or refusing to eat, almost by definition you're going to have to restrain them, either physically or with sedatives, temporarily. While Le Packing may be a French peculiarity, it's not like psychiatrists in other countries never resort to drastic measures.

Amaral D, Rogers SJ, Baron-Cohen S, Bourgeron T, Caffo E, Fombonne E, Fuentes J, Howlin P, Rutter M, Klin A, Volkmar F, Lord C, Minshew N, Nardocci F, Rizzolatti G, Russo S, Scifo R, & van der Gaag RJ (2011). Against le packing: a consensus statement. Journal of the American Academy of Child and Adolescent Psychiatry, 50 (2), 191-2 PMID: 21241956

"Packing" Autistic Kids: A French Scandal

Back in the bad old days of autism they thought it was caused by "refrigerator mothers".


Well, right now, some psychiatrists have decided that the best treatment for autism is something not that far removed from sticking them in a refrigerator - literally. Enter "Le Packing", which is the target of an unprecedented consensus statement just out from a list of 18 big-name autism experts (available free here).

This alleged therapy consists of wrapping the patient (wearing only underclothes or naked in the case of young children) several times a week during weeks or months in towels soaked in cold water (10°C to 15°C). The individual is wrapped with blankets to help the body warm up in a process lasting 45 minutes, during which time the child or adolescent is accompanied by two to four staff persons.

The alleged goal of this technique is to “allow the child to rid him- or herself progressively of its pathological defense mechanisms against archaic anxieties,” by achieving “a greater perception and integration of the body, and a growing sense of containment.”

No, really. Frankly, they could have stopped there, because the description is condemnation enough, but they go on to write:

We have reached the consensus that practitioners and families around the world should consider this approach unethical. Furthermore, this “therapy” ignores current knowledge about autism spectrum disorders; goes against evidence-based practice...and, in our view, poses a risk of preventing these children and adolescents from accessing their basic human rights to health and education.

Le Packing, as the name suggests, originated in France, and its use seems to be confined to France and other French-speaking areas. This is the first I'd ever heard of it. Little has been written about it in English (though see this long article and this piece from 2007) so here's my loose translation of the the article on the French Wikipedia:

• Packing is used in children with autism, but also in others: psychotic adults (specifically when they're recovering from an acute psychotic episode), in the elderly, etc.
• It's intended to restore "awareness of the body image".
• It's extremely controversial. Well, duh.
• The technique was invented, in France, by a "controversial American psychiatrist" called M. A. Woodburry. It was intended for the treatment of severely autistic children and adolescents, especially those with severe behavioural problems such as self-harm, aggression, and refusal to eat.
• The patient is wrapped in towels covered in cold water: two towels for the torso, and one for each arm and leg. They're then additionally wrapped in a sheet and then blankets, over the towels. The cold water quickly warms up thanks to body heat: the child is never actually hypothermic.
• After this session, the child is "frictionné" (I guess this means massaged) and taken to their living quarters and offered a snack "in a friendly atmosphere".
• Le Packing is intended to recover a physical sense of their own body. It should be used as part of a wider package of care, and only with the consent of the patient's parents.
• The cold water is optional; some, e.g. a Dr A. Gillis, use warm water nowadays. The key point is the restraint, i.e. the fact that their attempts to move their body are restricted temporarily. Hence "le packing", huh.
  
• The scientific status of Le Packing is controversial. A group called "Léa pour Samy" say it should be banned, and replaced by the (much more orthodox) method of ABA. However, in 2007, authorities approved a randomized controlled trial led by a "Dr Goeb" of the CHU hospital in Lille.
• Critics accuse Le Packing of being an unethical, inhuman and degrading treatment, maybe even torture. There are allegations of cases in which the towels were much colder than 10°C, e.g. straight out of the freezer.
• There are also allegations of its use without parental consent. A Professor Pierre Delion, of the CHU in Lille, reportedly defended this in remarks to The Lancet "if a child is in danger following a road accident, you do not wait for the parents' agreement to give him a transfusion." But this is actually a misquote. In the Lancet piece, he was referring to the patient's consent and said parental consent was always sought.
  
• In 2009 a government minister told the French Senate that Le Packing should only be used under strictly controlled conditions according to a protocol - but others, e.g. the "Léa pour Samy" group, want it banned altogether.
  

This rather speaks for itself, but I'll say this. If someone is suffering these kinds of severe behavioural disturbances, the temptation to do something dramatic must be intense. Indeed, if someone's disturbed to the point of trying to mutilate themselves, or refusing to eat, almost by definition you're going to have to restrain them, either physically or with sedatives, temporarily. While Le Packing may be a French peculiarity, it's not like psychiatrists in other countries never resort to drastic measures.

Amaral D, Rogers SJ, Baron-Cohen S, Bourgeron T, Caffo E, Fombonne E, Fuentes J, Howlin P, Rutter M, Klin A, Volkmar F, Lord C, Minshew N, Nardocci F, Rizzolatti G, Russo S, Scifo R, & van der Gaag RJ (2011). Against le packing: a consensus statement. Journal of the American Academy of Child and Adolescent Psychiatry, 50 (2), 191-2 PMID: 21241956

Autistic Children In The Media

Emory University's Jennifer Sarrett offers an interesting although sadly brief analysis of the way in which autism is treated in the mass media: Trapped Children.

She examines media depictions of children with autism, first in the 1960s, and then today. In those 40 years, professionals radically changed their minds about autism: in the 60s, a lot of people thought it was caused by emotionally distant refrigerator mothers; nowadays, we think it's a neural wiring disorder caused by deleted genes.

Yet, she says, while theories about the causes have changed, the media's view of what autism is hasn't, and assumptions from the 60s are still around (even amongst professionals). She identifies two enduring themes:

Fragmentation. The child with autism is somehow not a whole person; they are fundamentally "broken". And the family with an autistic child is emotionally shattered, too. In the 60s, the theory was that the broken family caused the autism. Nowadays, it's the other way round: having an autistic child stresses family relationships to breaking-point.

Imprisonment. The child with autism is at heart "normal", but their autism has them trapped, blocked-off from the world. Bruno Bettelheim, a leading champion of the refrigerator mother theory, called his major book The Empty Fortress. Either professionals, or parents, need to "break through" the autism to contact the "real" child imprisoned by the disorder. Likewise, this real child is eager to get out, but this is very difficult: they are crying out for help. In the 60s, it was psychoanalysis that could free the child. Today, it's anything from Prozac to chelation and other quack "biomedical" cures.

The problem with these kinds of articles is that you can really make up any themes you want, and find examples to fit. That doesn't mean it's a pointless exercise, it just means that the examples can't prove the analysis right. You need to ask yourself: does this, in general, ring true?

Sarrett's analysis does ring true for me, especially the theme of imprisonment, which is almost never made explicit, but it seems to lurk in the background of a lot of modern thought about autism. The autistic isn't really autistic. Their autism is something external - if only we could reach the normal child underneath! Every attempt to "cure" or "rescue" the autistic child relies on this belief.

I said that this paper is sadly brief. There's so much more to say on this topic; in particular, we need to compare representations of autism to those of other developmental disorders like Down's syndrome, in order to work out what's specific to autism as opposed to just general "disability" or "disorder".

However, I think if you did this, you'd probably end up agreeing with the paper. I can't remember Down's syndrome being portrayed as a kind of self-fragmentation or imprisonment; this article seems quite typical.

Sarrett recommends accounts by authors who have autism themselves for an alternative and more valid view of autism: people like Temple Grandin and Daniel Tammet:

autistic voices can promote a much needed faithfulness and tolerance to future representations of autism and those diagnosed with autism.

Although she admits that these authors only speak for a subset of those with "high-functioning" autism or Asperger's, and that

there remains a population of people with autism who are not writing, speaking and reading, making the representations advanced by these narratives subject to questions about generalizability.

Sarrett JC (2011). Trapped Children: Popular Images of Children with Autism in the 1960s and 2000s. The Journal of medical humanities PMID: 21225325