Saturday, June 21, 2008

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 co├Ârdinate 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.

Diagram of a Standard Deviation
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.


  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

Saturday, June 14, 2008

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 here2,3,4. 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.


  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.


  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.

Friday, June 13, 2008

The Pleasure of Finding Things Out

Back in the early 1980s, the BBC science newsmagazine Horizon interviewed Richard Feynman. I have been a fan of his ever since I was in high school and read volume 1 of his Lectures. So, I thought it was really neat that the show is available on YouTube. Here is the show, along with some of my own comments.

Part 1

The artist that Feynman is referring to is probably Jirayr Zorthian, whom he talks about in his book "Surely You're Joking, Mr. Feynman".

Feynman's way of pronouncing "processes" sounds unusual for an American. Was this something he picked up from his wife Gweneth?

Feynman expressed warm memories of his father, who cared deeply about his education and upbringing. From what Feynman says, it was he who instilled in him a deep curiosity about the natural world as well as a healthy dose of skepticism.

Part 2

Part 3

Feynman's decision to not worry about what other people may think of his work and just do the kind of research that he finds interesting, is a sane and healthy one. Too often, people will do things not for their own pleasure, but to impress other people. I believe that if people made more sensible lifestyle choices, they would not be in so much debt and would be much happier.

Feynman's story about the spinning plate illustrates the power of serendipity. The questions surrounding quantum electrodynamics would have been solved, but not nearly as elegantly, if Feynman had not been fascinated by that spinning plate.

Part 4

I appreciate Feynman's stance on the need for solitude and quiet. In my work, I need to be alone and undisturbed in order to move ideas around in my mind. Ideas are my livelihood, and if I cannot think, I cannot work. This is a big reason I do not work for a large corporation.

Part 5

Wednesday, June 11, 2008

Ich bin ein Asperger

When President Kennedy declared "Ich bin ein Berliner", he was trying to tell the people of West Berlin that he was one of them and that their struggle was also his. A few Germans giggled when he said that, because Berliner can also mean "jelly donut". JFK's speechwriters should have had him say "Ich bin Berliner", meaning that he is a resident of Berlin, and not a jelly donut.

I learned this little bit of trivia when I took a semester of German while I was an undergraduate. In the German language, a person from someplace will often be described by a noun that has an '-er' to the end of the word. Thus, if I wanted to say "I am an American", I would say "Ich bin Amerikaner". Someone from Brazil would be called a Brasilianer. And yes, a resident of Vienna (Wien) would be called a "Wiener".

Some of these names are now used to describe certain foods. So, we have Frankfurters, Wieners, Hamburgers, etc. This got me thinking: what is an Asperger?

As it turns out, there actually is a small town in southern Germany called Asperg. They even have a coat of arms:

Hans Asperger was born in Vienna and practiced medicine there for most of his life. It is entirely possible, however, that some of Dr. Asperger's ancestors came from Asperg, and that is how he got the name.

There is not very much to Asperg itself. It is a small town north of Stuttgart, in the state of Baden-W├╝rttemberg. A Google search turned up a website for the city of Asperg. Everyone there seems to be very proud to be an Asperger!

So. If I were to say "Ich bin Asperger", I would be saying that I live in the town of Asperg, or that I identify with the town. Now, if I said "Ich bin ein Asperger", I believe that I would be saying something more. I would be identifying myself with the town's most famous son, as it were.

The next time we all decide to have some sort of convention, we should definitely consider holding it in Asperg, Germany.

Tuesday, June 10, 2008

Controversial New Movement: Autistic and Proud

Well, it is controversial from ABC News' point of view.

I am not normally a viewer of Good Morning America, but I was alerted to this story broadcast this morning, by Kristina Chew, author of the excellent Autism Vox blog. She and Ari Ne'eman were interviewed, and I suspect that a lot ended up on the cutting-room floor. The video and a transcript are here.

The thing that annoyed me about this was the adversarial tone that the interviewer took with Mr. Ne'eman and Prof. Chew. The interviewer, Deborah Roberts, sounded incredulous when both of them, in separate interviews, told her that they were not interested in a cure for autism.

Now, I am going to tread into some very dangerous ground. Deborah Roberts is African American. What would her response be if someone told her that there should be a cure for being Black? Although racial prejudice is far less of a problem today than it was when she was born (1960), it is still something that African Americans have to deal with. What if she could be "cured" of being Black and be transformed into being White? This way, she would no longer have to face discrimination due to her skin color. Would she want to do this?

I think that this sort of research would be considered monstrous by people of all races. Even though there are still enormous problems with racial bigotry in this country, we have also made a great deal of progress. I highly doubt that any African American would want to change who he or she is.

Just as being Black is a very large part Ms. Roberts' identity, being an Asperger is a big part of who I am. Just as being Black has affected how Ms. Roberts grew up and learned to deal with the world, being an Asperger has affected how I developed and learned how to come up with ways to deal with a society that was not really built for me and others on the spectrum.

I did not mean to make anyone uncomfortable by drawing these parallels. Racism is one of those topics, I suppose, that nice people are not supposed to talk about. I believe that that is an intellectually dishonest position. The Autism Rights movement needs to draw from the experiences of the Civil Rights movement of the 1950s and 60s, as well as the Gay Rights movement of the 1970s and 80s, if we are to get anywhere.

Monday, June 9, 2008

No More Television!

Today, I turned in my cable television tuners. I am no longer an inhabitant of Newton N. Minow's "vast wasteland".

For me, television stopped being interesting. The local cable company offers over sixty channels with its basic service, and even with that incredible variety, I often could not find anything that was remotely watchable. If I did watch anything, I would then feel guilty afterwards, knowing that I could have used that time much more productively.

Then there is the cost of cable. Even though I am only subscribing to the basic service, I am paying a little less than $60 per month. This was such an incredible rip-off. Why should I pay that much money for an inferior product that does not even give me any pleasure?

And so, this morning I unplugged the cable boxes and returned them to the company. I was surprised that they did not give me a hard time or try to get me to reconsider. They must get a lot of people who bounce back and forth between cable and satellite, so they must have assumed that I will be back soon. Don't hold your breath, Liberty Cablevision.

Fixed the Language Issue

Alright, it looks like I have everything in English now. I had to go to the main website and set it there, and then had to do it again when I logged into my account. It is amazingly stupid, but it works.

Sunday, June 8, 2008

Getting old

Orac's Respectful Insolence blog had an interesting post today.

He is not fifty years old just yet, though. I turned forty a while back, and what made me feel a bit old was something that I saw on late-night television. It was a ad for a pre-paid funeral plan asking me if I was born between the years 1923 and 1968.

Oh shit, that's me!

I am on the upper edge of their criteria, but I can finally qualify for a crappy life insurance policy. It does not have the same feeling as when I turned 21 and could drink.

What will my next milestone be? Turning fifty so that I can join the AARP? How old do I have to be to be eligible for a senior citizens' discount at Denny's? I can hardly wait.

More about Asperger Syndrome

Faithful readers of my old blog over at WordPress will know that I am a self-diagnosed Aspie (a shorthand term for a person who has Aspergers). I have not been as active in the autism rights movement as I probably should have; blame it on my lack of time. Still, there are a few things that bear comment:

1. Jenny McCarthy's "Green Vaccine" movement.
Honestly, I have never seen anything so ridiculous as anti-vaccinationist movement. The fact that Jenny McCarthy, essentially a stripper who hit the lottery, is recognized as a leader of this movement just goes to show how intellectually bankrupt it is.

2. "The Autism Rights Movement", New York Magazine, 25 May 2008
The author, Andrew Solomon, tried to be even-handed to all sides of the debate. All in all, I think it was a good article, though there were a couple of points where I have problems.

I do wish Solomon had left John Best out of his article. His "Hating Autism" blog is something to be read while holding one's nose. There is no reason to give him any more publicity.

Solomon seems to be fairly "neurotypical". His tone is one of bafflement that people would want to remain autistic and not have many close relationships with other people. Speaking for myself, I am very satisfied with my relationships. I prefer to deal with people on my own terms, which often means that I seem isolated from the rest of the world. Like many aspies, I find social interaction to be tiresome and annoying, unless the topic of conversation is interesting. It takes me a while to "depressurize" myself after I am among people. Solomon finds it hard to understand why anyone would not want to be gregarious. I think that he needs to understand us a bit more.

3. Hillary Clinton
I am not sorry to see her leave the presidential race. The Clintons have exerted a rancid influence on American politics for nearly 20 years, and now it seems that the long nightmare will soon be over.

There are plenty of things wrong with Barack Obama; his notions about economics are simplistic and I am absolutely certain that his foreign policies will be a disaster of Carteresque proportions if he is elected. Even so, he has been supportive of Autism Rights, as part of a larger fabric of Civil Rights. I do appreciate this, and I wish my preferred candidate, John McCain, would embrace this.


Hello and welcome to my blog.

Previously, I was using WordPress for my blogging, but I was finding that there were a few problems associated with it. Chief among them was that I could not set my own password: I had to use the one they gave me. I also had a need to switch between systems (my desktop, my Apple iBook and my Asus Eee) and it was a hassle for me to synch everything up.

Now, the only problem I am having with Blogger is the language settings. I live in Puerto Rico, but I prefer to blog in English. Blogger insists on having all of the controls and text in Spanish. I realize that they may think that they are being "helpful", but I do not see it that way. If anyone has any suggestions for fixing this, I would be very grateful.