Visiting Ann Arbor

Ann Arbor, Michigan is one of my favorite places. I was there on Tuesday, visiting the places that were familiar to me when I was a student at the University of Michigan.

I was a student at UofM for only a year. I had taken some time off from my studies at MIT, and since I was an in-state student, it made sense for me to go there and pick up some credits.


During the summer of 1987, I lived in this dormitory, Mary Markley Hall. I will have to find out later who Mary Markley was; at the time I was living there, I was not too curious about it. I suppose that she was an alumna of the University.

I lived there from May to August of 1987. During that time, I studied Microeconomics, Linear Algebra and Complex Variables. At the end of the Summer, I decided to stay and take some physics courses.


From September 1987 to April 1988, I lived in Oxford Housing. It was an unusual arrangement for a dorm, because they were more like apartments than dorm rooms. Most of the residents were graduate students, but there were a few upperclass undergraduates there too.


Dennison was where most of my classes were taught. Rumor had it that the upper floors were unsuitable for most experimentation because the building swayed too much in the wind.

Does Tylenol + MMR Cause Autism? Really?

Apparently a group at UC San Diego thinks so. Kristina Chew's blog, AutismVox, tipped me off about this in a posting today. The abstract for the article can be found here¹. The text of it follows:

The present study was performed to determine whether acetaminophen (paracetamol) use after the measles-mumps-rubella vaccination could be associated with autistic disorder. This case-control study used the results of an online parental survey conducted from 16 July 2005 to 30 January 2006, consisting of 83 children with autistic disorder and 80 control children. Acetaminophen use after measles-mumps-rubella vaccination was significantly associated with autistic disorder when considering children 5 years of age or less (OR 6.11, 95% CI 1.42—26.3), after limiting cases to children with regression in development (OR 3.97, 95% CI 1.11—14.3), and when considering only children who had post-vaccination sequelae (OR 8.23, 95% CI 1.56—43.3), adjusting for age, gender, mother's ethnicity, and the presence of illness concurrent with measles-mumps-rubella vaccination. Ibuprofen use after measles-mumps-rubella vaccination was not associated with autistic disorder. This preliminary study found that acetaminophen use after measles-mumps-rubella vaccination was associated with autistic disorder.

Let us try to break this down:

• The study was performed to determine if acetaminophen, taken after the Measles Mumps Rubella (MMR) vaccination is associated with autism spectrum disorder.


• The data were collected via an online survey of parents over the course of about six months (16 July 2005 to 30 January 2006).


• The samples were 83 autistic children and 80 control children.


• This survey found that acetaminophen use after the MMR vaccination was significantly associated with autistic disorder in children under the age of five.

The first alarm bell that went off in my head was the use of an online survey to collect the data. The abstract does not reveal how the survey was presented to the parents, whether the parents selected themselves to participate in the survey, or even where the surveys were conducted. I probably will not find out, since the publishers of the journal Autism allow only subscribers to view the article.²

Childhood vaccination has become a political and emotional issue these days, and there is no doubt that some parents have strong opinions about it. I would think it remarkable to expect parents to put aside their biases and emotions and then fill out survey form in a dispassionate manner.

Next, how were these children chosen? Did the authors post something on a website seeking test subjects? How did they screen for suitable subjects? Did they actually examine the children at any point, or did they simply rely on the parents' word? Can a parent's memory, already pretty biased, be relied on for data on when and how much acetaminophen was administered?

The sample sizes are also suspicious. If we accept the statistic that 6 out of 1000 people are on the Autism Spectrum, why then did they only sample 80 children for their control group? A real control group ought to be much larger.

My thoughts on this are that the researchers were doing a lot of hand-waving and were pretending to be performing a double-blind study. I am very much reminded of Feynman's dismissal of "cargo-cult" science, in which people will use scientific terms and methods in a slipshod manner in order to make their research look "respectable".

Footnotes

1. S.T. Schultz, H.S. Klonoff-Cohen, D.L. Wingard, N.A. Akshoomoff, C.A. Macera, Ming Ji, "Acetaminophen (paracetamol) use, measles-mumps-rubella vaccination, and autistic disorder", Autism, Vol. 12, No. 3, 293-307 (2008) DOI: 10.1177/1362361307089518


2. This is another one of the high horses that I sometimes ride: the practice by academic journals of restricting access to their articles. Considering that the vast majority of the research that the articles are based on are paid for with taxpayer money, and that the journals rely on what is essentially free labor by both the authors and the peer reviewers, it strikes me as unjust for these journals to then demand great sums of money to access these articles. This is, however, a subject for a later post.

Heading out...

I will be going up to Detroit this Saturday (2008-07-12) and coming back in a week and a half.

Why Detroit? I agree that nobody vacations there, but I grew up in the suburbs there, and I like to go up there to see places and things that are familiar to me that may have changed. I will be uploading photographs in later entries showing the places I have been during my visit.

What Makes a Hero?

Some months ago, Paul Graham wrote an essay entitled Some Heroes. Paul gave us a list of his own personal heroes, and their reasons for greatness¹. I think I might have pissed him off when I wrote a comment that brought up the allegation that P.G. Wodehouse collaborated with the Nazis. Wodehouse's fans are very protective of his legacy, it seems.

Lately, the notion of what makes a hero has been severely debased. Sports stars, musicians and actors are considered to be heroes by many youngsters (as well as by adults who ought to know better). If you ask someone why Tom Cruise is his hero, he will often cite a role that he played in a film. "Yeah, Tom Cruise was so cool in those Mission Impossible movies, man!" Tom Cruise never did any of the stuff shown in the films, though. Not once was his life at risk: stunt doubles and special effects are what made him look cool. Did he ever actually save someone's life or put his own life on the line for a great cause? Well, no. He is just some guy blessed with good looks who appears in films.

I am not trying to heap abuse on Tom Cruise. It is nothing personal and I am sure that he is a pleasant enough fellow. All I am saying is that he does not quite measure up to what a real hero is.

When I think of what a real hero is, it is someone like Raoul Wallenberg, a man who risked his own life to save the lives of thousands of Hungarian Jews during World War II. Sometimes, I wonder how I would have acted, were I in his shoes.

Another hero of the War was Douglas Bader. In December 1931, Bader lost his legs in an aircraft accident. Writing about it in his logbook, he simply remarked:

Crashed slow-rolling near ground. Bad show.

Bader's understatement serves to show how very English this Englishman was. This minor handicap ultimately did not keep him out of the Royal Air Force. Instead of taking a desk job, he requalified as a fighter pilot and flew the Hurricane and the Spitfire in combat, shooting down 22 German aircraft. After he was shot down in August 1941 over Occupied France, he was captured by the Nazis and held as a prisoner of war. He took the POW's obligation to escape to heart, and made many attempts, eventually frustrating his captors so much that they took away his prosthetic legs. After the war, Bader was promoted to Group Captain (equivalent to a Colonel in the U.S. Air Force) and knighted.

One thing though, is that I believe you really should not meet your heroes, if you want them to remain your heroes. They are human beings, not gods, and will have the same weaknesses and biases that anyone else has. I am sure that even Martin Luther King had his bad days.

I am reminded of a story that I heard once about how Mel Brooks met Cary Grant. Back in the day, when Mel Brooks was starting out, he met Cary Grant at a party, and he invited him out for lunch. Cary Grant was Mel Brook's idol; he thought that he was the coolest guy who ever lived, so of course, he was thrilled to be able to hang out with him.

They went out for lunch at someplace like Sardi's or The 21 Club and they stayed for about three hours. Mel Brooks was entranced by Cary Grant's stories about Hollywood in the 1930s and 40s, and so when Cary Grant invited him out for lunch the next day, Mel Brooks enthusiastically agreed.

The next afternoon, they met at the same place and dined for three hours. The only problem was that Cary Grant told exactly the same stories that he told the previous day. Mel Brooks was shocked. "Oh my God, My hero is a bore!" After that, whenever Cary Grant called his office to invite him for lunch, Mel Brooks dodged them, begging his secretary to make up excuses.

I have no idea of whether this story is true or merely apocryphal. But it does sound plausible.

On the Misuse of Statistics

The conventional wisdom holds that something like 0.6% of the population is a part of the Autism Spectrum. This translates to 6 out of 1000 people. That does not sound like much, does it? Schizophrenia, for instance, has been estimated to have a prevalence of 4.6 out of 1000 people¹. The National Institutes of Health estimates that 70 out of every 1000 Americans has diabetes²

Now, let us play with the numbers. We could say 6 out of 1000, but we could also say 1 out of 150. The two figures are approximately the same. "OMG! 1 out of 150!?" is probably the reaction of most people when they hear 1/150. The thing is, 6/1000 does not sound as bad, because most of us do not think they know a thousand people. A percentage like 0.6% does not sound that big. But 1 in 150? Most folks are acquainted with at least 150 people. It is a number that is easy for the mind to wrap itself around.

---

Accusations are often hurled at people who espouse Neurodiversity, by those who have agendas of their own. Neurodiversitists³, they say, are not "really" Autistic. Either that, or we are not "representative" of the "Autism Community".

I believe that it is presumptuous for anyone to declare that someone like me is not "really Autistic". If you are an "autism mom" reading this, feeling incensed that some pretender is mocking your child's condition, by claiming to be autistic, please remember that you do not know me. You did not grow up having to struggle to understand social cues, or dealing with the awkwardness of being the "weird kid" in school. You have never spoken with my teachers or my parents. I suppose you might think that because I graduated from a prestigious university and can hold down a job, I can be called "high functioning" and not be considered to have any problems.

The reason that I could be labeled as "high functioning" is that over the years, I have developed my own methods for dealing with the larger world. These tools, however, are things that I have worked out cognitively; there is nothing instinctual about them. Most people are able to handle the give and take of conversation, whether it be small talk or flirting. I can speak easily enough with people that I know well, but it take considerable mental effort for me to hold a conversation with a complete stranger. Afterwards, I feel that I need to be alone, in order to let out the pressure inside of me.

On the other hand, being on the Spectrum has helped me a lot. I am not one of those AspiePride people who think we have "superpowers", but I do believe that my talents more than compensate any sort of social awkwardness that I may still have, Like many of us, I do think in pictures and my spatial reasoning is very well developed. I have always been very good with Mathematics. My understanding of it has always been very intuitive; I have hardly had to think about it in order to learn something new. This has helped me a lot in developing computer software. It is all about algorithms. They just snap into place in my head, without giving them much thought. Recently, I have started learning to play the piano. The music theory has come very easily to me. The hard part is getting my hands to coördinate themselves.

Then there is the debate over whether people like me are "really representative" of people who are on the Spectrum. Usually, these arguments come from people who are pushing one agenda or another, whether it be a "cure" for Autism, mercury or other toxic metals, or the idea of the "Indigo Children"⁴. We are an affront to their deeply cherished conspiracy theories, because we get along just fine without them and their "help".

S.L., writes about this in her excellent blog. In "High Functioning? Then Shut Up!", she lays out an interesting conundrum. Autism Speaks and the Mercury Militia crowd present a picture of Autistic people as a bunch of children who violently act out, fling feces, bang their heads against walls, and make their parents' lives a living hell. Anyone who does not fit this model is not "really" Autistic, according to these people.

On the other hand, S.L. opines, these same groups are very inclusive of us when it comes to compiling statistics. How else could one gin up a figure of 1 in 150?

I will go even further. Just how representative are the "autism moms" in the Spectrum. I have not seen any hard evidence going either way, but my hunch is that they are not very representative at all. An elementary knowledge of statistics and probability theory will tell you that extreme cases are very rare and that a population will tend towards a mean. This is the reason why Einstein's children did not become extraordinary scientists, or Mozart's children did not become great musicians: Einstein and Mozart were enormously talented and gifted men, far off to the right on the distribution curve of genius. Most people are not geniuses, and will be somewhere close to the mean, well within the standard deviation.

The same is very likely to be true of how people on the Autism Spectrum are distributed. Simon Baron-Cohen⁵ has suggested that everyone has varying degrees of empathizing and systemizing, and that how much or how little of each quality one has, depends a lot on one's genetics. In general, he says that males are better at systemizing and females are better at empathizing. There are exceptions, people who do not fall within the standard deviation about the mean.



Image created by Peter Strandmark. Used under the Creative Commons License.


People on the Spectrum, Simon-Cohen believes, are people who are outside of the standard deviation, falling on the left side of the empathizing curve and falling on the right side of the systemizing curve. Extreme cases, those on the tail ends of the curve, are very rare.

How rare? Nobody knows for sure, however, it is unlikely that the extreme cases form the majority of those on the Spectrum. What is more probable, is that the spectrum is mostly made up of people who range between "high-functioning" and "needs help with some things in order to get by." Many of us are grown-ups who have jobs and families and stuff. Hardly the feces-smearing children portrayed by Autism Speaks.

Footnotes

1. "How Prevalent is Schizophrenia?" PLoS Med (2005) 2(5): e146
   
2. National Institute of Diabetes and Digestive and Kidney Diseases. National Diabetes Statistics fact sheet: general information and national estimates on diabetes in the United States, 2005. Bethesda, MD: U.S. Department of Health and Human Services, National Institute of Health, 2005.
   
3. Look everyone! I believe I have invented a new word!
   
4. Finally! A set of beliefs even sillier and stupider than those espoused by the Mercury Militia.
   
5. Baron-Cohen, S. (2003), The Essential Difference: Male and Female Brains and the Truth About Autism, New York, Basic Books ISBN 0-465-00556-X
   

1 in 150? Really? Part 1.1?

Jonathan, of the Autism's Gadfly blog, pointed out in a response to my previous entry¹, that the 1 in 150 prevalence rate for Autism in the US came from an ongoing study by the Centers for Disease Control.

Here is their information about Autism prevalence. Their report is here^2,3,4. As a layman⁵ in the public health field, I will need to go over these papers a bit more closely in order to produce an analysis.

The only thing that I find to be consistent in all of these studies is how divergent their conclusions are, running the gamut from 2 in 10,000 to 62.6 per 10,000. Changes in the definition of Autism over the years accounts for a lot of the differences. Diagnoses can vary as well, because clinicians will often have to make a judgment call when faced with borderline cases.

Footnotes:

1. Needless to say, I am thrilled that my blog is getting responses. I do not really care if you disagree with me, as long as you keep it civil. B^)
   
   
2. Centers for Disease Control and Prevention. "Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2000" Surveillance Summaries, 2007-02-09 Morbidity and Mortality Weekly Report (2007) 56:SS-1
   
   
3. Centers for Disease Control and Prevention. " Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002" Surveillance Summaries, 2007-02-09 Morbidity and Mortality Weekly Report (2007) 56:SS-1
   
   
4. Centers for Disease Control and Prevention. " Evaluation of a Methodology for a Collaborative Multiple Source Surveillance Network for Autism Spectrum Disorders —Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002" Surveillance Summaries, 2007-02-09 Morbidity and Mortality Weekly Report (2007) 56:SS-1
   
   
5. Although I make my living writing computer software, my background is actually in physics.
   

1 in 150? Really?

A figure that is much bandied-about by groups such as Autism Speaks, is that one out of 150 people in the United States is on the Autism Spectrum. Michelle Dawson, in an excellent blog entry entitled The Epidemiology of Autism Speaks, shoots lots holes into the arithmetic used by that group. Michelle reports that Autism Speaks has made the remarkable¹ claim that one in 150 children is on the Spectrum and that there are 1.5 million autistic children living in the United States. That would mean that according to Autism Speaks, the U.S. has over 225 million children. (!)

This has left me more than a bit curious. Just how accurate is the 1 in 150 statistic? Is it true? It is repeated in news stories about Autism so often, it sounds like an incantation used to make the story more authoritative and believable. But where did this number come from? Was there any research to back it up?

In the search for evidence, I turned first to the National Institute of Mental Health's website. Finding information about autism was simple. Going through the online booklet on Autism, I found this:

Prevalence studies have been done in several states and also in the United Kingdom, Europe, and Asia. A recent study of a U.S. metropolitan area estimated that 3.4 of every 1,000 children 3-10 years old had autism.

This was in the first paragraph of the section What are the Autism Spectrum Disorders? Wait, 3.4 out of 1,000 children? Doing the math, that works out to 0.0034; 1 out of 150 is 0.0066. The quoted study indicates that the rate may be half of what the conventional wisdom holds.

Looking through the references, I found the study they cited: "Prevalence of Autism in a US Metropolitan Area"², published in the Journal of the American Medical Association. The article can be found here on the Journal's website. The researchers studied the records of children aged 3 to 10 in five counties in the Atlanta area in 1996.

This paper contains several revealing things:

• At the time of the article's publication (1 January 2003), there have been only four studies of the prevalence of ASDs in the United States. Three of them were conducted in the 1980s and early 1990s. The last one was done in 1998³. The authors confess that because of this, little is known about the actual number of people on the Spectrum.
  
• In the first three studies, they found a rate of 4 out of 10000. The 1998 study found it to be as high as 67 per 10000, but the article's authors warn that that figure may be badly skewed.
  
• The numbers they cite from other studies performed in the US and abroad are wildly different. Studies from before 1985 claim that only 4 to 5 out of 10000 are on the Spectrum, with 2 out of 10000 having the classic Kanner's autism. Recent work in the UK suggests that it could be as high as 62.6 per 10000⁴.
  
• In their study of Atlanta-area children, the authors found that the prevalence of ASDs among Black and White children were the same, 3.4 out of 1000.
  
• The authors did not actually examine the children. They relied on school records and the written assessments of psychiatrists, pediatricians, neurologists and other mental health professionals to determine if a child is autistic. By claiming that this was a public health issue, they were able to obtain these records without the parents' permission.
  

The UK study, published in 2001, claims a rate that is close to the 1 out of 150 figure. The trouble is that they used a much smaller sample than the 1996 Atlanta study did (about 10%) and were more inclusive in what they considered to be an ASD.

What does this all mean? The 1 in 150 meme is a product of lazy thinking and lazy fact-checking. It only took me a few minutes to find contrary data on the NIMH website and then find the referenced research. I am reminded of another phony statistic that had been tossed around for a long time, namely that one out of every ten American men are gay or leaning towards being gay. This figure is attributed to Alfred Kinsey's study, Sexual Behavior in the Human Male, which was written in 1948. Kinsey's methodology was extremely flawed; his data collection relied on interviews with volunteers, many of whom were or had been prisoners. This ten percent figure had a nice ring to it, and because of the success of Kinsey's books, it entered the public consciousness and never really left.

In the same way, 1 out of 150 is an easily understood number that anyone can repeat without actually giving it any thought. It has all of the hallmarks of a made-up statistic that may have roots in legitimate research, but has taken a life of its own.

Footnotes

1. I have always liked how the United State Supreme Court uses the word 'remarkable'. In written opinions, the justices use it as a term of polite damnation. It would not do for them to say that an argument was 'stupid' or 'a bunch of horseshit': that would be unsubtle and rude. Instead, they will call a ridiculous argument 'remarkable' and leave it to the rest of us to fill in the blanks.
   
   
2. Yeargin-Allsopp M, Rice C, Karapurkar T, Doernberg N, Boyle C, Murphy C. "Prevalence of Autism in a US Metropolitan Area". The Journal of the American Medical Association.. 2003 Jan 1;289(1):49-55
   
   
3. Bertrand J, Mars A, Boyle C, Bove F, Yeargin-Allsopp M, Decouflie P, "Prevalence of Autism in a United States Population". Pediatrics (2001) 108:1 1155-1161
   
   
4. Chakrabarti S, Fombonne E. "Pervasive Developmental Disorders in Preschool Children". The Journal of the American Medical Association. (2001) 285:3093-3099.
   The article may be found here.