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Bias, Stigma and Stereotyping and their Effects on Autistic People

8 Jul

One of the presentations I made at the University of San Diego Summer Autism Conference was titled Bias, Stigma and Stereotyping and their effects on Autistic People. In the talk I explained that one tool researchers use study bias is called the Implicit Association Test or IAT . I don’t have extensive knowledge about IATs but I know a little about them because when I was an undergrad at UC Davis (a couple of years ago) I had a volunteer position as a research assistant to a professor who used IATs to study bias, specifically bias against particular ethnic groups.

My job was to interact with the research participants (who were likewise undergraduates), one of my most important duties was to get a signature from each participant on a release form that explained their rights as test subjects. I also had a little memorized statement to tell them about what they they were to do and what they should expect while taking the test (on a computer). Afterward, I was supposed to answer any simple questions that they had and tell them how to contact the professor or a post-doc to answer more complicated questions.

Occasionally the students really wanted to talk about what the material used in the experiment or about how the experiment was designed, and occasionally I had time to talk about it with them. Besides directing them to direct their questions to the researchers, I told them that if they wanted to learn more about the IATs, in general, there was a popular book called Blink, by Malcolm Gladwell, that would give them a little more information. I also told some of them about the Harvard University website called, Project Implicit which is dedicated to sharing information about the Implicit Association Test and is also used to gather data from the (anonymous) people who take the tests online (for free).

The experiment with which I was assisting wasn’t designed didn’t give the “results” of the tests to each individual participant, their data were not “attached” to them as a person with a name, but it was aggregated, more or less, with dozens of other people’s data. But, if you take an IAT on the Project Implicit site, the computer tells you your “results”. Here’s a link to the Project Implicit website:
https://implicit.harvard.edu/implicit/demo/takeatest.html

Near the beginning of this presentation in San Diego I read the following quote:
Every man has reminiscences which he would not tell to everyone but only to his friends. He has other matters which he would not reveal even to his friends but only to himself, and that in secret. But there are other things that a man is afraid to tell, even to himself, and every decent man has a number of such things stored away in his mind. – Fyodor Dostoyevsky
Dostoyevsky was writing about what people know at different levels of consciousness. I would say that he was pointing out that there are things that people believe that they would prefer not to believe, and those things are sometimes subconscious. I got the quote from the Project Implicit website.

If you read the book Blink, you may remember that he explained that everyone has biases and we don’t all like or agree with our biases. We may even have subconscious biases against people of our own group or ethnicity. Those biases might be there because of negative portrayals of people of our own group in the media and in the dominant culture we are surrounded with.

This picture is a sample of a page from one of the IATs on the Project Implicit website. If you saw this particular page during a test you would have been instructed to place the face in the category on the left or the one on the right, and as quickly as possible. Basically, you hit the “e” key on your keyboard if you think the picture or word in the middle if the screen belongs in a category that is listed on the left of the screen, and you hit the “i” key if you think that picture belongs in a category that is found on the right side of the screen.

For this particular IAT photographs of faces of White Americans or Native Americans (all the photos of faces were from late 1800s as far as I could tell). So for this particular page you would probably want to hit the “i” key because this fellow looks like a Native American and that category is on the right side of the page at this point in the test. The photos of faces were interspersed with modern color pictures of places that were located either in America or in a Foreign country. I don’t remember which places they showed, but for instance, a picture of the Eiffel Tower, or the Great Wall of China, might be shown and if you were taking this IAT you’d decide quickly if it was a photo of an “American” place or if it was a “Foreign” place.

Project Implicit offers free access to some journal articles about IATs, as far as I could tell, they don’t have any that touch on bias and autism. But they did have a paper there called: Implicit and Explicit Stigma of Mental Illness: Links to Clinical Care. It’s by Peris et al. It is “in press.” Obviously, keeping in mind that this is not a paper about stigma and autism, but about stigma and mental illness, I think it’s still worthwhile looking at what these researchers found.

In total, 1,539 participants were interviewed online and took an IAT (not unlike what I described above, using a keyboard to categorize words as quickly as possible as belonging to a category shown on the left or right side of the screen. More than half of the participants had studied psychology. This group ranged from undergrads studying psychology up to practicing psychologists. The bulk of the participants were professionals who not only had training in psychology, but presumably lots of experience of being around people with varying sorts of mental illness. They also had a control group of people without psychology training.

If you download the paper you can get the details, but to give you a very brief idea of what they did. The experiment the participants were asked to report what they thought about mentally ill people. Quoting the paper:

Participants rated their attitudes toward “mentally ill people” on a 7- point semantic differential scale (1 = bad to 7 = good). Analogous scales were completed for two other common stereotypes about persons with mental illness: blameworthy/innocent and helpless/competent. Note, the same ratings were also made regarding “people on welfare” to match the relative comparison category used on the IAT measure. In this way, we could more readily evaluate the relationship between the implicit and explicit bias measures.

They took an Implicit Associations Test designed to look for implicit associations or biases that the participants might have that would tend to link mental illness with negative words.The test compared judgments about people with mental illness with judgments about people who are on welfare.

In the first sorting condition, items representing the category Mentally Ill People (e.g., diagnosis, disorder) were categorized with the same response key as items representing the category Good (e.g., wonderful, joyful), while items representing Welfare Recipients (e.g., unemployed, poor) were categorized with the same response key as items representing Bad (e.g., terrible, awful). In the second condition, Mentally Ill People and Bad items were categorized with one response key, and Welfare Recipients and Good items were categorized with the other.

You may have to read the whole paper and perhaps some other background information on IATs to understand how they are designed and scored in order to get the rationale behind the study design.

The participants were also shown clinical vignettes which were “DSM IV based” clinical descriptions of people with problems who could be diagnosed as mental illness. They also looked at one vignette of a person with “general psychological difficulties” that didn’t really fit into any mental illness category.

This study reported the interactions between explicit and implicit biases and “clinical decision making”. Explicit biases are ones that the participants self-reported. Implicit biases were those not stated openly, but were “implicit associations” that were revealed by the IAT.

The were some findings that I thought were possibly applicable to the experience of autistic people being treated or diagnosed in “clinical settings.” The more training a person had in psychology, and presumably the more exposure that person had to people with mental illness, the more positive view they tended to have of mentally ill people. Which is good news. The bad news, which is old news to most people, is that the controls which are meant to represent the average person on the street without particular training in psychology (when compared to those with training) had more explicit and implicit bias against the idea of mentally ill people. Mental illness carries with it a heavy load of stigma. It may seem natural enough for us to fear and stigmatize mental illness, but it’s not so fun for those with mental illness to deal with being treated badly and thought of badly simply because of a label, not necessarily because of anything in particular that they have done.

Back to the study’s findings, even though people with training in psychology tended to have relatively less bias the mentally ill, there was still enough bias among them to measure and make correlations with how they tended to see those in the clinical vignettes. Peris et al found that if a clinician openly expressed a bias against mentally ill people, that he or she would tend to give a worse prognosis for a person whose description he had read. A bad prognosis might look something like, “this person is unlikely to be able to remain employed,” or “this person is likely to harm himself or others.”

On the other hand, if the person openly expressed no bias against mentally ill people, but nonetheless showed a perhaps hidden bias against the mentally ill via the IAT, that person tended to give a better prognosis, however tended to “over pathologize” or add on extra labels, the paper called this, “over-diagnosis”. In over-diagosis the person described in the clinical vignette got additional labels that the writers of the vignettes didn’t intend. For instance, the person in a clinical vignette who had symptoms best fitting a single diagnosis of alcohol dependence might get additional inappropriate labels like, anxiety disorder or major depression.

To quote the paper’s authors: “… the finding of a link between bias and clinical decision-making is striking and suggests that negative views toward mental illness may influence clinical care, even among individuals with considerable mental health training.” Of course, the authors say that the study should be extended to see if the way the psychologists reacted to the clinical vignettes is the same as they would diagnose and give prognoses in their practices.

Coming back to autism, maybe we need the think about whether or not bias against autistic people could likewise influence clinical care of autistic people. It’s well known that parents will work to get clinicians to either give or not give particular autism spectrum diagnoses. A parent of a child with bipolar disorder may prefer that their child be diagnosed with Asperger’s since Asperger’s is still a recognized disorder or disability, but maybe it has a cachet of “genius” that bipolar doesn’t have. And if you are very much involved with autism at all you probably know that people will try to get a kid who generally would be seen as “Asperger’s” to get an “autistic disorder” diagnosis so that the kid can get more services paid for by some entity. And some parents of obviously autism spectrum kids pressure diagnosticians to take the label off their kid because they don’t want the child to be ….uhm… stigmatized. And, unfortunately some parents want to have their efforts at curing their child to be officially recognized as successful, so maybe they’d like to say, “See I gave my kid 5,000 methyl B12 shots and she had 40 rounds of IV chelation and 300 dives in an HBOT tank and it all paid off!” or maybe they’d like to say, “Selling our home and taking on extra jobs and begging money from all our relatives to pay for ABA therapy has left us in tatters financially, but we got our real boy back.” Of course, it is appropriate to re-diagnose autistic kids sometimes. Some do start out looking very autistic and end up looking close to normal, at least some of the time. You can watch a couple of talks by Deborah Fein on the MIND Institute website about this very thing. She points out that kids sometimes move from looking autistic to looking ADHD, perhaps plus OCD, or plus ODD or anxiety… which makes me wonder about how much the clinician’s biases are influencing the desire to rid the kid of a single diagnosis or PDD,nos and replacing it with mulitples like “ADHD plus social anxiety plus depression.” Hmmm?

We know that clinicians sometimes give negative prognoses for very small children, such as, “this two year old child is autistic. He will never marry, never have a job, you might as well lock him up now in an institution and get on with your lives….” and we also know that some autistics have lots of different diagnoses on top of an ASD. We might ponder about why that is, is it because of bias against autistic people and autism in general? We don’t know because, as far as I can tell no one is studying it. Autism clinicians are pretty much all assumed to be blank slates who don’t bring to the table their own biases that influence their ability to judge a situation fairly or accurately. Autistic people are, in my opinion, inherently “irritating” to most folks. We aren’t so ingratiating or charming, we aren’t precisely acting on typical social rules, generally speaking, to say the least. Still if you learn more accurate things about autism as opposed to stigmatizing misinformation such as is commonly found on the Autism Speaks website or from the mercury parent organizations where you may read that autistics destroy families and are walking toxic-waste carrying “train-wrecks,” or you may hear that autistic teens are tsunamis of fiscal devastation, thank you Stephen Shore.  If you learn the true things about autism and autistic people you may actually start to like autistic people. You might think we are pretty fabulous. I think we are pretty fabulous. If you listen to people like me say things like, “autistics are pretty fabulous,” you can actually start to think differently about autism and perhaps change your biases.

I also found three other papers that I thought were interesting, they were referred to in this book chapter on IATs. (Lane, K. A., Banaji, M. R., Nosek, B. A., & Greenwald, A. G. (2007). Understanding and using the Implicit Association Test: IV: Procedures and validity. In B. Wittenbrink & N. Schwarz (Eds.), Implicit measures of attitudes: Procedures and controversies (pp. 59-102). New York: Guilford Press.) You can request this chapter from the project implicit website.  It’s free.

Could similar problems caused by bias against autistic people be affecting autistic people now?

In one study, physicians who held stronger negative stereotypes of African American people were more likely to give them less adequate care after a heart attack. Or you could say, “Belonging to a group your doctor has a bias against can be bad for your health.”

People with a bias against African Americans score lower on a test of intelligence in the presence of an African-American person. Or, if you are in the presence of someone who has a bias against you you can expect them to behave less intelligently.

Stronger implicit stereotyping of members of a group was associated with more negative judgments of ambiguous actions by a member of that ethnic group. Or, if people have a bias against you they will tend to interpret your neutral actions as negative.

What biases or attitudes about the autism spectrum, autistic children and autistic adults might we be hiding from ourselves? Is this important to ask?

Does 'autism' disrupt? And what does it disrupt?

8 Jul

Interesting post in the Seattle Times today. The title is _”Autism disrupts work and pay, article says”_ .

The article in question is a new study from Pediatrics:

<blockquote>An emerging body of work is showing the impact an autism diagnosis has on a family….<blockquote>….families with a child with ASD were 7 times more likely to report that child care problems affected employment than comparable families with typically developing children. These accommodations probably result in lower household income.</blockquote></blockquote>

Now, I’ll be upfront and say that I know those circumstances to be true. A combination of my own diagnosis (of manic depression) and my child’s diagnosis of severe autism with associated learning difficulties has made things very difficult at times. It is a simple truth that I cannot progress in my chosen career (I am a web developer) much past the stage I am at now because doing so means committing myself  (excuse the pun) to a schedule of work I cannot possibly meet, given our home circumstances. A lot of my professional friends and colleagues who are about my age and are of a similar skill level to me are now either owning their own companies or heading up teams of designers.

But…is it right to say that autism is the disrupting influence? Obviously In my own life there are my own personal medical issues but even so, I do not think it is right to say that it is _this_ which is the disruptive influence.

It is a simple truth that much more is expected of workers of this generation. People of my parents age never had the work pressures we do now. Employees are expected to work ‘above and beyond’ if they want to progress. To work hours beyond – way beyond – their contracted hours, to never be ill, to keep holidays to a time that is non disruptive to the employer. We in the West have started to live to work rather than working to live.

For a family with a special needs child (of any age) it is simply not realistic that they can meet this expectation. And so we _do_ need to expect a less financially comfortable life.

But what is the disrupting influence? Is it autism? Is it manic depression? Is it Down’s Syndrome? Is it Cerebral Palsy? Is it any other physical or mental difference?

Or is it the demands of a society that is putting less and less stock on the family and more on work?

Vaccine Court Judicial Conference: Panel Discussion Cancelled

3 Jul

Every year the Court of Federal Claims holds a “Judicial Conference”. The point seems to be a good one: get the Special Masters (Judges) and the lawyers together to discuss the system. The Vaccine court is essentially non-adversarial and it is a pretty small community.

As noted in a letter from the Chief Special Master discussing this year’s Judicial Conference:

I believe wholeheartedly that the Bench and Bar must communicate periodically to improve the system of justice. I believe this Conference program – the panel discussions of general vaccine policy issues and of the information underpinning vaccine compensation decisions – can provide that important dialogue.

Sounds great. Let’s face it, the community of professionals involved is fairly small: a few Special Masters, a few law firms. The purpose of the Vaccine Act was to make a non-adversarial program. They should take advantage of that to make the system work as well as possible for the people.

This year’s Conference was going to be different: amongst other events, they were going to hold a couple of panel discussions.

The first panel is tentatively titled “Vaccines: Balancing Benefits with Parental Concerns (the autism issue?).” It will be moderated by Sharyl Attkisson, a reporter with CBS Evening News. The panelists will be Arthur Allen, author of “Vaccines”; David Kirby, author of “Evidence of Harm”; Dr. Ed Marcuse, Professor of Pediatrics at the University of Washington, who has served as a member and Chair of HHS’ National Vaccine Advisory Committee, and as a member of CDC’s Advisory Committee on Immunization Practices; and, Dr. Bernadine Healy, Health Editor, TJS News and World Report and former Director of the National Institutes of Health. There is no doubt that this discussion will be lively and informative.

Yep, that’s what David Kirby has been talking about, to the point of adding it to his bio for his recent speaking engagements.

Well, the word on the street is that this first panel has been can canceled. There are no public details of why. I would not expect to hear the details of “why”. That leaves the field open for people to interpret as they will. We see way too much of that in the autism community, so I’ll try to stick to my own predictions and my own view of the panelists.

I can already imagine the posts to the yahoo EOHarm group and other places. I hope to be pleasantly surprised, but I suspect to hear talk about how the subject was “too controversial” and how “controversial reporters” are being kept from talking.

I don’t know why this panel was canceled. I do know that I would not have wanted to participate. It doesn’t have anything to do with the fact that there would be people, perhaps a majority, on the panel whose opinions I disagree with. I agree that discussion is important, and I think getting the right message out is vital. But I wouldn’t want to share the panel with people it has to do with the methods used by some of the people on the panel.

So far, I have found Dr. Healy’s comments to be without substance. Notice that I didn’t say without merit, but without substance. I’ve heard vague statements about how people were “scared” to look for susceptibility groups. I’ve heard about how the vaccine question was put to rest “too soon”. Nothing that really backs those statements up; they stand as opinions. Nothing about the actual science that exists–especially about the lack of quality of the science that purports to support the vaccine-causality question. I’ve heard opinions, but not facts. I see someone who has made a minor media splash, but not someone with autism credibility.

I honestly don’t know why she was on the panel.

My major issue with the panel would have been the fact that it included Mr. Kirby. While someone like Dr. Marcuse could be said to be lending their credibility to the panel, Mr. Kirby would be using the panel to enhance his own credibility.

Why should David Kirby be be allowed to represent himself as an expert (on similar footing as, say, Dr. Marcuse?) and add to his credibility by being on this panel at all? David Kirby is certainly no expert. He has a book riddled with errors. He has blog post after blog post demonstrating his lack of scientific acumen. The one thing he would bring to the table would be his information about Hannah Poling. In that he is an expert, but only because he is the only one given the information. I don’t see how his, well, interesting interpretations would be of benefit to the members of the Court.

But, being wrong is the smaller issue. If you aren’t wrong sometimes, you aren’t pushing the envelope. I am certainly wrong at times, as has been demonstrated on this blog quite recently.

But when I am wrong, I am wrong in my quest to figure things out. If I am correct, it is in the quest to figure things out. It isn’t about me. but asking and, hopefully sometimes, answering questions about autism. (OK, and sometimes venting a little). One thing you will never hear from me: “This isn’t my crusade“. If I am wrong about vaccines, I can’t walk away. If I am demonstrably wrong about vaccines and autism, you’ll see me fighting hard on the other side. Autism isn’t something I can leave behind if a new book deal comes through. If someone leaks a Court document to me, it won’t be a boost to my career. And this doesn’t even touch on blog post after blog post misusing the CDDS data to create the image of an epidemic or little hints of “bombshells” which may or may not materialize. Again, being wrong isn’t the point. Being wrong in search of self promotion, that I have issues with.

If I could, I would give a gold star to Arthur Allen for agreeing to be on this panel. Not because I agree with him, but because it was obviously going to be a painful experience based on the makeup of the panel. Maybe I haven’t been watching closely, but the only times I’ve seen his name mentioned as a panelist for this Judicial Conference has been in David Kirby’s announcements.

I would give a great big gold (heck, platinum-iridium) star to Dr. Marcuse for even considering being on the panel. Of the entire panel, he’s the one person with real credentials in the field of vaccines.

If I were Dr. Marcuse or Arthur Allen, I would have considered seriously pulling out of this panel discussion once the details became known.

This panel discussion was only a fraction of the Judicial Conference. The rest is, as far as I can tell, still going to happen. For example, the second vaccine panel discussion appears to be still “on”:

The second panel will utilize some of the information from the first discussion and apply it when discussing the effects of decisions under the Vaccine Compensation Program. The title for the second panel is “Vaccine Compensation Under the Act: A Mix of Science and Policy?” This panel will be moderated by Senior Judge Loren A. Smith, who was the Chief Judge when the Vaccine Program first began at the court in 1988. The panelists will be Kevin Conway, a petitioners’ counsel since the Program’s inception; Randolph Moss, a partner at WilmerHale and co-chair of the firms’ Government and Regulatory Litigation Group, who represents vaccine manufacturers; Dr. Paul Offit, the Chief of Infectious Diseases at the Children’s Hospital of Philadelphia, a professor of pediatrics at the University of Pennsylvania School of Medicine, and the co-inventor of the rotavirus vaccine, RotaTeq; Marguerite Wilner, former Vice-Chair of the Advisory Commission on Childhood Vaccines; and Ruth J. Katz, Dean of the School of Public Health at The George Washington University. Previously, Dean Katz served as counsel to the Subcommittee on Health and the Environment in the U.S. House of Representative (then chaired by Congressman Henry A. Waxman), where she helped develop the National Vaccine Act. With these different perspectives, this promises to be an interesting discussion! ! ! !

That does sound like an interesting discussion. How does the Court does mix science and policy? How should they balance the two? Those seem likekey questions.

And there is another panel on ethics involving expert witnesses:

In addition to these two “must see” vaccine discussions, this year’s Conference offers an Ethics panel that vaccine practitioners will find quite meaningful. Judge Mary Ellen Coster Williams will moderate a discussion regarding ethical issues involving expert witnesses. The panel will include Special Master Denise Vowel1 and a law professor, Joseph Sanders from the University of Houston. With the extensive involvement of experts in vaccine litigation, this panel discussion should provide important information and considerations to all vaccine practitioners.

I hope it is a very productive Conference for the Court. It already seems to likely to be one of the more memorable Conferences, and it hasn’t even happened yet.

Autism Hub at USD and on NPR

25 Jun

Under the care of Dave Seidel and HollywoodJaded, the Autism Hub has gone from strength to strength. They are to be massively congratulated for all that the Hub has become.

However, two other people have driven the Hub into new areas this past year. These two people have demonstrated both singly and jointly exactly the ethos I hoped the Hub would have. Parents and autistic people speaking together.

One of the key areas Steve and Bev have worked in is getting the Hub to an academic audience and a public audience. Steve has worked tirelessly to arrange not one, but two Autism Hub based presentations to an academic audience. I’ve blogged it already but the University of San Diego is currently holding a conference at which Autism Hub bloggers are taking a large part.

Autism Hub at USD

Also on this issue, Steve and Bev appeared on National Public Radio station KPBS show ‘These Days’ to talk about the USD conference and the Autism Hub.

You can listen to the show in MP3 format. Bev and Steve do a fantastic job and it was great to hear the personification of the main idea behind the Hub (that of autistic person and parent to autistic people speaking together).

I wanted to offer a hearttfelt thank you to Steve and Bev for doing all that they have. It really does matter and it really is important. Thank you.

Is the Prevalence of Low Functioning Autism Among the Amish Actually Lower Than Expected?

2 Jun

Note: For purposes of this post, the term ‘low functioning autism’ will refer to autism that co-occurs with mental retardation, or an IQ evaluated at less than 70. The validity of this accepted nomenclature is not the topic of this post.

–

Summary

The prevalence of low functioning autism among 2-9 year-old Amish children in Lancaster County, Pennsylvania, has a lower bound of 14.2 in 10,000. This is in line with the prevalence of reported autism with mental retardation in the California DDS system (at most 13.1 in 10,000) for the same age cohort. Additionally, it is not too far away from the prevalence of low functioning autism as ascertained by more methodologically rigorous epidemiological studies.

While no assertion can be made about the prevalence of high functioning autism among the Amish, the existence of an “Amish anomaly” is unsupported and appears increasingly unlikely.

Background

Dan Olmsted had written a well-known series of articles where he claimed (1) that Amish children are never vaccinated [source] or that only a small percentage are [source], and (2) that the Amish either don’t have autism or that autism is exceedingly rare among the Amish.

These claims were subsequently scrutinized by Prometheus, Autism News Beat and Lisa Jo Rudy. They investigated the matter and found that both claims are most likely mistaken. Autistic children do exist among the Amish, and the Amish do indeed vaccinate. The Amish of Illinois appear to vaccinate at a rate of 90%. Lisa Jo Rudy’s source provided a figure of 70% for the Amish in Lancaster County.

Apologetic responses by Dan Olmsted and Mark Blaxill (PartI and Part II) followed. The gist of the responses is that Dan Olmsted was not actually negligent in his reporting. Olmsted claims he did attempt to contact The Clinic For Special Children without much success. Additionally, Olmsted and Blaxill claim that while the Amish do vaccinate, they do so at a lower rate than that of surrounding communities, and therefore, they argue, the finding of an “Amish anomaly” is still relevant to the hypothesis that vaccination is an autism risk factor. (The responses also appear to indicate that those who scrutinize Olmsted’s reporting are “wackos” and say “some stupid things” — I’m guessing this was done to discourage further criticism).

Notwithstanding these responses, it is clear that the credibility of Olmsted’s reporting suffered a substantial blow. Take, for example, one of his most popular findings: That the few autistic children he came across happened to be ones who were vaccinated. This finding is rendered completely inconsequential by the mere fact that most Amish children are vaccinated at least once.

What I really want to address in this post, nevertheless, is the persistent claim that autism is exceedingly rare among the Amish, with a focus on low functioning autism.

Why low functioning?

Dan Olmsted was not likely looking for high functioning children, and even if he was, it is improbable he had the means to properly ascertain the prevalence of high functioning autism. The expertise required for such an endeavor is non-trivial. A methodology that consists of “asking around” is not likely to produce an accurate result.

Furthermore, Dr. Strauss of The Clinic For Special Children had told Autism News Beat that they do not screen for ASDs, nor do they see high functioning autistic children at their clinic.

Strauss says he doesn’t see “idiopathic autism” at the clinic – children with average or above average IQs who display autistic behavior. “My personal experience is we don’t see a lot of Amish children with idiopathic autism. It doesn’t mean they don’t exist, only that we aren’t seeing them at the clinic.”

Strauss says a child in the general population is more likely to have autism detected early and to receive a diagnosis than an Amish child. “An Amish child may not be referred to an MD or psychologist because the child is managed in the community, where they have special teachers,” he says. “We know autism when we see it, but we don’t go actively into the Amish community and screen for ASD.”

[source]

With all due respect to Dr. Strauss, I think a clarification is in order before we proceed. I believe he mixed up terminology in his statement to ANB. Idiopathic autism simply means that no cause has been determined for a particular child’s autism. There may or may not be mental retardation in idiopathic autism. The same is true of non-idiopathic autism.

It seems plausible that The Clinic For Special Children generally only sees autistic children who are low functioning. The important thing is that this is the case of the children in a study we will discuss shortly.

Another important clarification is that when I talk about low functioning autism I am not referring to Autistic Disorder vs. “full syndrome autism” vs. PDD-NOS vs. Asperger’s Syndrome. This appears to be a common point of confusion. There may or may not be mental retardation in Autistic Disorder. It is not a requirement in the diagnosis.

Minimum Prevalence Calculation

I am not going to count autistic children Dan Olmsted claims to have found. This is because it is unclear how many exactly he found where, given his reporting methodology, nor is it clear what the characteristics of the children are. Furthermore, I personally don’t consider his reporting reliable.

Thankfully, there is a peer-reviewed study we can use: Strauss et al. (2006). This is a study of Old Order Amish children from Lancaster County. In Table 1 of the paper we see they look at 9 patients, ages 2 to 9, 100% of whom have mental retardation, and 67% of whom have pervasive developmental delay or autism. In other words, this study identifies 6 low functioning autistic children. Let’s consider this the minimum number of autistic children, ages 2 to 9, among the Amish of Lancaster County. At this point we just don’t know if The Clinic For Special Children has come across other low functioning autistic children.

Also of note is that the children “had no distinguishing physical features, and growth trajectories were normal, although all patients had relatively large heads and diminished or absent deep-tendon reflexes.” This tells me that there was nothing noticeably odd about these autistic children that would lead someone to believe they are different to non-Amish autistic children. The fact that a genetic etiology was determined in these cases by top geneticists is of no consequence to a prevalence calculation in my view.

The Amish population of Lancaster County is about 25,200 (Raber’s 2004 Almanac via this web page). Their life expectancy is similar to that of the US general population. However, they have high population growth, with their population doubling every 20 years. This is similar to population doubling in India, which I will use as a reference to calculate the number of 2 to 9 year olds among the Pennsylvania Amish. According to the CIA World Factbook, 31.5% of the Indian population is 0 to 14 years of age. Extrapolating from this, I will estimate that 16.8% of the Lancaster County Amish are 2 to 9. In other words, there are 4,234 such children.

Since we know there are at least 6 low functioning autistic children in this community, the absolute minimum prevalence of low functioning autism for the cohort is 14.17 in 10,000.

California Comparison

No methodologically sound exhaustive autism screening has been carried out in the Amish population. We only know about cases that have been reported. This is why I thought a comparison with California reporting would be fair. It may not be precise, since the ascertainment methodologies are not the same, but I don’t believe it can be called an unfair comparison. Further, I do not believe the well known limitations of California DDS data make the comparison unfair either.

As of December 2007, there are a total of 17,029 children 2 to 9 in California classified as autistic and who have sought DDS services [source]. Most of them do not have mental retardation. We don’t know exactly how many have mental retardation, but we can determine a ceiling on that. For this, I counted how many autistics total have mental retardation, plus – to be fair – how many have “unknown” mental retardation status. This came to 32.67% of all autistics in the system. Since this proportion is known to have dropped considerably as more young children have been diagnosed in recent times, it follows that 32.67% is an upper bound percentage when it comes to children. In other words, there should be at most 5,564 known low functioning autistic 2-9 year olds in the California system.

Since the 2-9 population of California is 4,248,774 (2006), the prevalence of reported low functioning autism for the cohort is at most 13.1 in 10,000.
Comparison to Epidemiology

I often discuss how the prevalence of already recognized autism, and the prevalence of screened autism (or true prevalence) are two very different things. In particular, when autism is thoroughly screened in populations with intellectual disabilities, a lot of autism which wasn’t previously thought to be there is suddenly found (e.g. Shah et al. 1982; La Malfa et al. 2004; Matson et al. 2007).

Epidemiological studies are not necessarily perfect in this regard, but their methodology goes considerably beyond any work currently available as far as the Amish population is concerned. Let’s take Yeargin-Allsopp et al. (2003), for example.

Cases were identified through screening and abstracting records at multiple medical and educational sources, with case status determined by expert review.

The prevalence of low functioning autism from this Atlanta study was 23.12 in 10,000.

There are two UK studies by Chakrabarti & Fombonne (2001; 2005) ascertaining the 4-6 prevalence of PDD. The derived prevalences of PDD with mental retardation from these studies are 16.15 and 17.5 in 10,000, respectively.

Finally, we have a Chinese study, Zhang & Ji (2001), with a finding of 11 in 10,000 autistic children, all of whom were “intellectually disabled.”

Autism Conference and Autism Science

29 May

First of all, I want to let people know that the second USD Autism Conference involving Autism Hub members Has been announced.

There is a Facebook Event to allow the Autism Hub Facebook Group to disseminate information about the conference.

This is, once again, due to the tireless work of Steve. Thanks are due to him.

Secondly, an interesting piece of new science has been announced:

A Long Island researcher has pinpointed for the first time brain regions in children with autism linked to “ritualistic repetitive behavior,” the insatiable desire to rock back and forth for hours or tirelessly march in place.

…..

In children with autism, Shafritz found deficits in specific regions of the cerebral cortex, the outer layer of gray matter linked to all higher human functions, including repetitive behavior. He also mapped deficits in the basal ganglia, a region deep below the cerebral hemispheres.

So this would seem to be yet another area of autistic behaviour that has been ‘reclaimed’ from the anti-vaccine people who claim that the repetitive behaviours were a symptom of mercury poisoning. This is, of course, all to the good as it means that accuracy has replaced supposition.

Neurological diversity

28 May

It is a common tactic of some people who believe that autism should be cured at all costs to state that ‘the neurodiverse’ are a small minority of adults with Aspergers Syndrome, intent on preserving themselves at the expense of their ‘low functioning’ cousins.

Take a recent post from Harold Doherty railing against Andrew Solomon’s piece in New York Magazine:

The Alleged Autism Rights Movement isn’t much help for the severely autistic, the truly severely autistic….. like my son Conor who wondered (sic) across a busy main street oblivious to the dangers of traffic; or those like the 10 year old severely autistic boy in North Carolina who was struck by a train and killed Saturday half an hour after police received a report he was missing from his home. [Or] like the 50 year old autistic woman who could not communicate to tell the world she was being abused by staff in the residential care facility in which she lives in Long Island…

The sad fact is that, if Harold Doherty would allow himself to see it, no-one from ‘neurodiversity’ is suggesting that people like his son, the 10 year old boy he describes or the 50 year old woman he describes, should not be helped to the fullest possible extent. The trouble is, that Harold (and people who hold similar views) are so caught up in what they _think_ they never actually _see_ . The other fact is that the basic tenet of neurodiversity as _I_ understand the term is that people like Conor Doherty deserve respect. The whole ‘cure’ thing is a fairly trivial side issue. Respect is what comes first.

There is no cure for autism. Does this mean then, that we should not fight for the rights of autistic people of _all_ ages, abilities and expressions? That because they are not neurotypical they do not have rights? or deserve respect?

_That_ is what (to me and I think to very many people) neurodiversity is about. Take Alex Barton – the five year old voted out of his class. That is a _lack_ of respect. There is absolutely no justification for that teacher to behave in that way toward a five year old child. Neurodiversity says ‘this little autistic boy deserves to be treated as if he were the same as anyone else in terms of his right to belong’. I fear that some people who call themselves autism advocates think the problem is easily remedied by curing Alex Barton’s autism (hypothetically of course). I think that that entirely misses the point. People used to look for cures for homosexuality – that was wrong too. The _person who is autistic_ deserves as much of a chance to be judged for who they are with their own set of unique abilities, shortcomings and character as the person who is not.

Does this mean we should ‘leave the autistic child as he/she is’? Of course not! That is the largest of red herrings. If someone cannot communicate, you help them communicate. If someone cannot use the toilet, you help them to learn.

And then, when they have reached the upper limit of the potential for learning on each of these subjects, you accept that that is who they are. For some, that might mean they can now speak. For some it might mean they can barely use one Makaton sign. The _amount_ they have learnt is not the measure of how much respect they deserve. They deserve respect regardless. So we must all work to make the environment safer for young autistic children. We must all work harder to make autistic adults living arrangements safe. These are basic human rights.

It should also be noted that, far from being an autism related term, neurodiversity touches on a whole range of things. Of course, they’re not all called ‘neurodiversity’ but well….

Are voices a symptom of illness or a variety of human experience?

Research has shown that there are many people who hear voices, some of whom cope with their voices well without psychiatric intervention, it has also been found that there are many people who hear voices who can cope with their voices and regard them as a positive part of their lives. Neither is it the case that voices have always been regarded as a negative experience.

Throughout history and even today there are people who hear voices who find their voices inspirational and comforting. These are facts that on the face of it are hard to square with the extremely negative way that the experience is regarded by psychiatry. The researchers, practitioners and involved voice hearers believe it is mistaken to regard voice hearing as part of a psychopathic disease syndrome. Rather, they consider it to be more akin to a variation in human experience – if you like, a faculty or differentiation – something like homosexuality, that it is definitely not open to cure.

Thats taken from a page on Hearing Voices from the Mental Health Foundation. I would suggest that you go read that entire page. Like neurodiversity, some members of the hearing voices community acknowledge that their condition (or the condition of a loved one) can be disabling and distressing. However, they all realise that their can be a unique benefit and comfort in knowing who they are. They believe that who they are can be best expressed as a variation in human experience.

A little closer to home (for me anyway), there is something called Mad Pride which is a movement again neurodiversity in all but name. Its a loose conglomeration of self advocates who are (or have been) diagnosed with mental illness:

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

The people in all these movements are autistic, manic depressives, schizophrenics, tourettes and many more. None of us deny the bad things that being the way we are can bring. But we do not believe that the fact that we are the way we are means that we are second-class or fodder for nothing more than quack therapies and misplaced pity.

All these peoples – and many more – are the neurologically diverse. The Neurodiverse. Belonging to neither nation, nor politics but simply belonging to the simple idea that everyone is _not_ equal but everyone can advocate best for themselves if supported and respected:

“Broken down it means ‘speaking for yourself’, ‘communicating in other ways’, but it’s personal. For me it means that I can speak for myself. It means I’ve got a voice and even without a voice I can communicate in other ways. It means yes and no- most important- ‘No, I don’t want tea, I want coffee, I don’t want sugar’- all the things we take for granted. It means people must listen to me, I can take a risk, I can have a relationship, that can be hard. I can think for myself, I can go to the shop with support and if I need help, people can help me….

Jackie Downer, Down’s Syndrome Self Advocate.

Dr. Johnson testifies in the Autism Omnibus Hearing

24 May

Dr. Johnson’s testimony was fabulous and I think it’s safe to say that it wreaks more devastation on the petitioners'(the parents) case. As of this moment, I can’t give you a lot of detail about Dr. Johnson’s qualifications, unfortunately. For some reason a portion of the audio recording (MP3) that would have included Dr. Johnson’s statement of his qualifications is missing.

One thing I think is important to point out here is that the respondents experts’ (written) reports, and even the list of the respondents’ experts has not been posted to the Autism Omnibus docket. The parents’ lawyers (the Petitioners Steering Committee, or PSC) do have their experts list posted to the docket. Some time ago (I think it was more than a year ago) the Department of Justice attorneys asked the Special Master if the Federal Court would refrain from posting the lists of the respondent’s experts for fear that their experts would be subjected to harassment. That request doesn’t seem to be on the docket now, but it used to be. It’s likely that after the experts were listed the first time the experts for the government were harassed. This would be in keeping with the way different experts, and even parents such as myself and Kevin Leitch and others, have been harassed by “mercury parents” or their friends. You can see from the Autism Omnibus Proceedings Docket Here: http://www.uscfc.uscourts.gov/node/2718 that the there are no more postings of lists of respondents’ experts after mid 2006. There’s an entry from March of 2007 that is called, “Respondent’s Notice of Expert Witnesses,” but there’s no document now linked to that entry.

The point I’m trying to make about the missing expert list is: I can’t pull up the list of expert witnesses for the respondents (the US government, essentially) for this hearing because it’s not available. So I can’t find out easily who Dr. Johnson is, though he is a professor at university, and has a lab, and has published on neurophyisology and neurodegenerative diseases, and he uses tissue slides and tissue cultures. Worse, “Johnson” is a very common name so if you go looking for experts named Johnson who publish in neurodegenerative diseases, you’ll find 3 or 4 of them in pubmed. The DoJ lawyer here is one of Mr. Matanoski’s team of attorneys. As far as I can tell the junior attorneys on the team are Bo (Beau?) Johnson, Ms. Ricciardella, Ms. Renzi and Ms. Espinoza (Espinosa?).

I don’t know which lawyer is examining Dr. Johnson. From her voice, I’m guessing (again) that it’s Ms. Renzi. Again this is my transcribing of what was said, some of it is word for word, some of it is a close paraphrase of what was said you can find the following somewhere around 8 minutes 43 seconds on the second MP3 file from Day 7 (May 20). Here is some of the very interesting testimony from Dr. Johnson:

Ms. Renzi: Dr. Deth cited a paper by Mady Hornig in support of his arguments. You mentioned that the mouse strain Dr. Hornig used was selected because it had a stronger immune response, but took issue with Dr. Deth’s explanation of the rationale behind the use of the strain. … Deth said hers was a mouse strain harboring genetic deficits in redox related enzymes… What strain of mouse was used?

Dr. Johnson: It was an SJL-J mouse. (Dr. Deth) was inferring that there was a redox enzyme differential, or some kind of differential (in this strain) and that’s absolutely not true. The mice have a this increased immune response and that’s why they were selected. … There’s absolutely no data supporting the fact that there is a redox enzyme differential. Now I can understand the reason that it’s in there because it supports his hypothesis… but it’s not an accurate representation of these mice.

Renzi: Do you have confidence in Dr. Hornig’s reported results?

Johnson: Uh, no.

Renzi: Part of that has to do with the hippocampal sections, correct?

Johnson: The quality of the images,… I’ll point this out, (the sections from the Hornig paper) .. What you can see is when you look at these images–to me these images are absolutely awful, now the staining here is hematoxylin and eosin, and it’s supposed to stain for architecture and cell integrity and a variety of other things. The pictures are diffuse, there’s no clear neuronal fields. Right here there is weak staining. … If you look here, the cells that are dark right there, those are the neuronal fields. The quality is just extremely low. … Quality of the sections themselves are low. … Let’s put it this way, I’ve seen this in my lab before. I’ve seen people come to me with sections stained like this. I’ll say: Something’s wrong. OK? The tissue wasn’t prepared right. There’s something definately wrong here. Because these do not maintain the nice cellular architecture that you should see if the experiment is done right and the tissue is harvested correctly.

Renzi: Problems with these slides led you to doubt the findings of the Hornig paper? Has a recent paper contradicted Hornig’s findings? …

Johnson: The… comparable fields in the Berman paper. To me they are absolutely beautiful. … It looks very, very, very good.

Renzi: … What dose of thimerosal was used in the Berman paper?

Johnson: …They also used a does that was 10 times higher…

Renzi: Did both studies (stain with antibodies)?

Johnson: There is a distinct difference between Berman and Hornig studies’ slides… If you look at the architecture of the tissue in the Berman study…. (there is) nice staining in the hippocampus….

Special Master:… (interrupt for clarification)

Johnson: … Berman sections are the two sections on the left side… What you can see is there’s very nice staining in the field, the neuronal field are not staining intensely (which is what they are expected to show)

Now if you look at the upper 4 panels on the right side these are from the similar panels from the Hornig study. The first thing that I want to point out is that if you look at the tissue, it’s full of holes… Look at this enhanced image right here, the bottom two panels C and D from the Hornig. You can see that the tissue almost looks like it’s disintegrating, It’s breaking down. There’s holes all over in the tissue.

I know from experience when you see tissue like this the amount of nonspecific staining by antibodies could be intense.

Basically, if someone came to me with this kind of staining in my laboratory I would say to go back and do the whole experiment again,… I would not want… for one these are unpublishable to me, and two the potential for artifactual data to be generated from this kind of (poor quality tissue) is extremely high. … This is very important. You know, you can do whatever you want after you’ve got the tissue, but it’s the process of getting the tissue so that the quality is extremely good. You need to start with high quality tissue.

… The Berman tissue was absolutely perfect. … The sections are beautiful.

One thing I took away from Dr. Johnson’s testimony is that there’s no way that the Hornig paper should

have made it past a competent peer review and into a “peer reviewed” publication. The Hornig paper has a few other problems that have been discussed before, but these problems never been reported in into a letter to the journal that published that paper, Molecular Psychology, as they should have. (Click here to download a copy of that paper from the SAFE MINDS website.)

Hornig wrote that paper with her main squeeze, Ian Lipkin, and with David Chian. This research was funded by the UC Davis MIND Institute, SAFE MINDS and by part of an NIH grant of Ian Lipkin’s. Surely someone knew how bad those tissue slides were even before it was submitted to the journal. Surely someone at the journal should have had a person with some kind of expertise review the article. Surely in 2004 some person with expertise would have noticed the problems with the degraded and uninterpretable tissue slides in the Hornig paper. I didn’t notice any problems with the slides when I read the paper because I don’t know what stained tissue of mouse hippocampus is supposed to look like and neither would most of the mercury parents who have tried to use this paper to show that their own child was made autistic by vaccines containing thimerosal.

The MIND Institute scientists must have seen the problems with Mady Hornig’s study, but they invited her to come speak about her thimerosal-causes-susceptible-mice-to-become-mindlessly-violent-killers hypothesis at the conference I call the “MIND’s mini-DAN!”. Video of her speaking at that conference is still available on the MIND’s website here: http://www.ucdmc.ucdavis.edu/mindinstitute/events/toxicology_recorded_events.html

And you can see video of John Green speaking there, too. He was described in the most glowing terms by Dr. Robert Hendren. Maybe Dr. Hendren didn’t know about the “earthworm eggs” and “fecal implantation enemas” that Dr. Green had prescribed to some of his patients. After Green spoke, Dr. Hendren knew about the problems with Green’s citing of a provoked urine toxic heavy metals lab result from Doctor’s Data Inc that was in Dr. Green’s slides, because I told Dr. Hendren about the problem with that lab report. As far as I could tell, Dr. Hendren wasn’t particularly worried about that. The video of Dr. Green “explaining” what that lab test meant to him is still on the MIND’s website. I have a problem with that, since parents can watch those videos and make poor treatment decisions for their children based on them. On the other hand, those videos seem to stand as a testimony to something less than scientific that seems to be going on at the MIND Institute. To UC Davis’ credit however, the Berman (2008) study that totally contradicts the Hornig (2004) study was also conducted at UCD.

Dr. Johnson has plenty of interesting things to say about Dr. Richard Deth and his neuroblastoma cell line experiments. Apparently, Dr. Deth will be back to testify again in the autism omnibus. Perhaps he will explain why he seemed to cut his experiments short (time-wise) and why he called neuroblastoma cells “neronal cells” when they should not be called neuronal cells, and why he didn’t show critically important “dose response curves”.credit: taminsea

I may have to devote a separate post to the issue of Deth taking data from (but not citing) a 1958 paper (pdf) that reported the level of cystathionine in duck brains (besides duck, also, human, cat, rat, guinea pig, horseshoe crab, chicken, cow and monkey).

Should Parents With a Stake in Vaccine Litigation be Disallowed From Commenting?

17 May

As I’d imagine most readers would agree, no, parents with a stake in vaccine litigation should not be disallowed from commenting simply on the basis that they have a conflict of interest. It doesn’t matter if the conflict of interest runs in the millions of dollars. Should Jon Poling, for example, be disallowed from commenting? I don’t think so in the least. In fact, some of us wish he’d be more forthcoming with information about his daughter’s case.

So why am I bringing this up? Apparently, Kim Stagliano does think it is a good idea for people with conflicts of interest in this debate to shut up, judging from a recent post of hers.

DR. OFFIT’S CONFLICT OF INTEREST SHOULD DISALLOW HIM FROM COMMENTING

(See also Orac’s take)

For those who aren’t familiar with Kim Stagliano, she’s the parent of two autistic little girls, one of whom, I understand, has never been vaccinated. Some call Kim the poster child of autism genetics. But I digress.

All of this got me thinking about conflicts of interest, though, and I’ve come to the conclusion that not all conflicts of interest are created equal. Let’s take monetary conflicts of interest, for starters. I can identify 3 groups in the autism community that do not have monetary conflicts of interest.

  1. Parents with no stake in vaccine litigation.
  2. Autistic people with no stake in vaccine litigation (which would include all autistic adults).
  3. Scientists and professionals who do not make a living from research or litigation on autism or related matters.

This is a rough characterization, of course. It’s always possible for parents or autistic adults to have conflicts of interest through their employment, for example. I doubt this is usually the case, nevertheless.

Some might say I’m biased, as I have basically identified the Autism Hub and friends as not having significant monetary conflicts of interest. Be that as it may, I believe it’s a roughly accurate characterization, and I’m willing to listen to arguments to the contrary.

But let’s face it. None of us are free of conflicts of interest in general. We might oppose attempts to stigmatize us, especially if said stigmatization is based on almost certainly false claims. We might have a huge emotional investment in the outcome of our kids. We might see litigation-motivated alt-med as a threat to the integrity of science, and so forth.

The point is that if Kim were right, then none of us, from any side of the debate, should be allowed to comment. Beyond arguments about freedom of speech, this is obviously nonsensical. Kim Stagliano should reconsider her statement.

A secondary point is that there are conflicts of interest and there are conflicts of interest. It seems to me that someone attempting to make millions in court, or someone who has been actually payed nearly millions to produce evidence of causation (which is not speculation on my part) has a much bigger conflict of interest than, say, someone who is employed by the government or someone who has served in the advisory panel of a pharmaceutical company. But again, none of this should disallow someone from commenting. It can be used to make a judgement about trustworthiness, sure.

The Autism Epidemic Meme is Behind Almost All Autism Woo: A Call for Additional Research

13 May

After learning former US president Bill Clinton had indicated he believes that “the number of children who are born with autism [is] tripling every 20 years” (hat tip Orac), an understandable reaction might be to point out his ignorance. Understandable, yes, but I think we are looking at a bigger problem than lack of scientific literacy or political pandering in this case; a problem that is going to have to be addressed in a manner that is clear and generally convincing.

A lot of the discussion in the autism community centers around the anti-vaccination movement. It is true that anti-vaccination could potentially become a major problem for the world as a whole, and it is also true that it is a source of stigma for autistics. Some of us have taken it to be our fight, even though it should probably be the CDC’s or the WHO’s fight, if they were not, as it seems, asleep at the wheel. Nevertheless, I think the persistent autism epidemic meme is a much bigger issue as far as the autism community is concerned. Not only is the notion of an epidemic stigmatizing, but it results in ideas that are more than just theoretically harmful to autistics, such as the idea that autistic adults don’t exist. These ideas will be around regardless of the existence of an anti-vaccination movement.

In my regular blog I have discussed the evidence against the notion of an autism epidemic at length. If I may say so myself, I might have even managed to half persuade a few people from the other side of the debate.
What I want to do here, however, is to essentially critique the evidence I’ve discussed thus far. Let me explain why.

Those of us who are immersed in scientific discussions involving autism are well aware, for example, of diagnostic substitution, of an apparently high prevalence of autism in adults, of the changing characteristics of autistics over time, of regional prevalence differences that resemble time-dependent differences, of the stability of cognitive disability as a whole, of the stability (even the decline) of institutionalization rates, of what went on in the past, and so forth. Taken as a whole, this evidence is overwhelming and convincing to someone such as myself who has studied and perseverated on it for years. Fundamentally, though, it is evidence that has a number of problems: It is too numerous, complex, disjoint and most importantly, lacking in precision; none of it is decisive on its own. We are talking about many bits and pieces of evidence that need to be put together and thought through in order to arrive at the conclusion that there is no such thing as an autism epidemic. I don’t expect someone such as Mr. Clinton to be aware of this evidence, understand it, or think through it, much less be able to analyze some of the publicly available data that is not yet available through the scientific literature.

You see, there’s no such thing as an IOM report on the autism “epidemic.” While I’m personally not that fond of basing my beliefs on what authority tells me I should believe, I think a pronouncement by major authorities on the matter would help inform the general public of the state of the debate and the evidence. For this, however, I believe additional research that specifically addresses the matter in a clear way is needed. Allow me to propose some avenues of future research that could potentially answer the remaining questions once and for all. I encourage readers to propose their own ideas.

1) Replicate Lotter (1967). We know that the prevalence of autism as currently defined is relatively high. We also know that the prevalence of autism as defined in the 1960s was relatively low (4.5 in 10,000). What we don’t know is whether the prevalence of autism ascertained using Lotter’s operationalized criteria and methods is still relatively low in 2008. I think it should be feasible to replicate Lotter’s methodology and criteria today and find out the prevalence, not of DSM-IV autism, but of autism as it was thought of in the past. Without meaning to be disrespectful, this should preferably be done while Lorna Wing is still with us. She claims to know which kinds of children Vic Lotter considered autistic and which he didn’t.

2) Determine the prevalence of autism in adults. This one is non-trivial, as there are some ethical issues to consider, but it seems they will attempt it in the UK. I hope it’s not another case of trying to find how many adults are diagnosed with autism or receiving services under an autism category. This wouldn’t teach us anything new and would just be fodder for David Kirby’s blog. I also hope they don’t assume all autistics must be psychiatric patients, for example. They should find a lot of autistics in the general population, and there is evidence they should find many who might not be diagnosable with autism despite meeting criteria, for various technical reasons. Of course, they also need to look in institutions and group homes, since a ready rebuttal will be that “low functioning” autism must therefore be what’s rare in adults.

3) Determine if regional differences in prevalence are real. When you study administrative databases in some detail, one thing that immediately jumps out is that there are huge disparities in the administrative prevalence of autism between certain regions, be it states, regional centers or counties. I have reasons to believe these differences are not real. If these differences are not real, I’d suggest it would be reasonable to hypothesize that time-based differences in administrative autism prevalence are of the same nature. I have suggested, for example, screening children with mental retardation from different regional centers in California to determine, at the very least, if there are real discrepancies in the prevalence of autism within the population with mental retardation. Another question that needs to be answered is why population density correlates so well with administrative prevalence (independently of things like environmental pollution, as I’ve recently found).

4) Explain the changes with a mathematical model. The plausible mechanisms that explain the rise in diagnoses of autism have been discussed at some length. They might include increased awareness, changes in official criteria, an increased availability of specialists, an increased availability of certain services, changes in cultural beliefs, and so on. I have even discussed the internet as a potential driving force behind increased awareness, particularly in the 1990s. But let’s face it, these are all essentially unproven mechanisms. No one has done a multivariate analysis that gives us a coefficient for each variable. Granted, some things are hard to quantify. It would be a lot like trying to quantify word of mouth. But some of this should be doable.

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