Natural Variation - Autism Blog

Comment Spam at Blogger Getting Out of Hand

2010-07-09T05:43:00.000-07:00

I've changed my comment policy slightly. I'm enabling comment moderation in posts that are older than 365 days.

This morning I got spammed in a way I've never been spammed before. A spam-bot with the handle xiaoyu posted the same comment spam in what appears to be each and every one of my blog posts.

It's a shame that Blogger doesn't have a good way to deal with comment spam. Their captcha obviously isn't working very well. Unfortunately, I don't believe spam-filtering is a breeze in other platforms either.

80% Divorce Stat is Complete Garbage

2010-05-19T12:58:00.000-07:00

Of course, we already knew that. There's a prior survey by Easter Seals on the question of divorce among the parents of autistic people.

Readers might remember I also tackled another 80% stat having to do with the divorce rate of autistic adults.

Both 80% stats are clearly made up. They are impossible to track back to original sources. The question is: Who made them up, and for what purpose?

Either way, do check out the story:

80 Percent Autism Divorce Rate Debunked in First-of-Its Kind Scientific Study.

The Anti-Vax Movement Still Peaked in 2002-2003 and MJ's Excuses are Trivial to Address

2010-04-19T06:31:00.001-07:00

MJ has written yet another rebuttal of my post on the media's interest in the anti-vax movement.

MJ's primary argument is basically that the absolute article count for "autism vaccines" has grown. The count for "autism" has simply grown more. I say that the relative count is what matters, but let's look into this in more detail.

As I've noted in comments, MJ fails to take into account that the total number of articles indexed by Google News Archive has also grown from year to year. Presumably, this doesn't mean people are reading more newspapers, but simply that Google is adding sources to its index all the time.

Estimating the total number of articles in Google News Archive could presumably be problematic algorithmically for Google. I have some ideas which I mentioned in comments, but I'm not confident that they would be unbiased.

Instead, let's check if searches for "autism genetic" relative to "autism" have the issue MJ thinks relative counts have.

They do not. There's no peak in 2002 here. There's no downward trend after 2002. There's no dilution of the word "genetic" in autism articles as more topics are covered. What we see instead is a remarkably stable trend.

We previously also looked at relative counts for "neurodiversity", which MJ had verified as well. This analysis also fails to support MJ's hypothesis. The same is the case of several other trends I've checked which I'm not going to go into here.

It's also illustrative to look at the raw article counts for "vaccine injury" (in quotes). These counts are presumably also biased by increasing coverage of autism topics, but maybe less so.

What we see here is consistent with a peak in 2002-2005, and a brief recovery in 2008 due to substantial propaganda efforts in relation to Jenny McCarthy and Hannah Poling. This effect cannot be expected to last very long, though.

MJ has failed to explain why the pattern of media coverage for "autism vaccines" generally matches VAERS autism submission trends and the number of autism cases filed with the vaccine court. It's lazy and convenient to simply say "the data was not meant to track this." What is the explanation?

Additionally, Smith et al. (2007) reports that:

MMR vaccine remains the number one ‘top of mind’ vaccination issue for parents. The proportion of parents believing MMR to be a greater risk than the diseases it protects against has fallen from 24% in 2002 to 14% in 2006. The proportion of ‘hard-core rejectors’ of MMR vaccine remains stable at 6%. There has been a gradual and sustained increase in the proportion of parents across all social groups saying MMR was completely safe/slight risk rising from 60% in 2002 to a current level of 74%. There now appears to be a sustained move away from fears over MMR safety and belief in the unfounded link to autism towards a more positive perception of the vaccine.

(My emphasis.)

Finally, an immunization report by the British NHS shows that MMR coverage had a low in the 2003-2004 period.

Conclusion

I've perseverated on this a lot more than I probably should, and I've gone out of my way to address ridiculous criticisms put forth by MJ.

MJ Reproduces A Result of Mine

2010-04-17T11:21:00.000-07:00

The anti-vax movement peaked in 2002, maybe in 2003. There are several different lines of evidence that point in this direction. I recently presented just two of them: Google News Archive articles matching "autism vaccines" relative to "autism" articles, and VAERS report submissions. Additionally, Sullivan over at LB/RB has put forth a graph of cases before the US vaccine court.

It's not surprising that such easy-to-confirm observations would hit a nerve with some people. Commenter MJ took issue with my methodology, at first claiming that as more autism articles are written, the word "vaccines" would tend to become rare in them, and later claiming that Google News Archive does not have the right bias for this type of analysis. None of this made any sense to me, and you can read the exchange in comments.

Then MJ wrote a post in response to my analysis where, evidently, MJ has come up with a reproduction (not repetition) of my prior result. You can see MJ's graph (which I copied with "fair use" in mind) on the right.

MJ takes comfort in the fact that newspaper articles matching the word "neurodiversity" are quite uncommon, relatively speaking. But see – and I doubt MJ doesn't realize this – that's a comparison of apples to oranges. Articles matching "autism vaccines" are about a public health issue, one that is bound to interest all kinds of readers. They are articles about court cases, studies, etc. Articles on neurodiversity are about an ideology, which reporters might not cover simply because they don't see a payoff in covering it.

If you're going to compare them, it obviously only makes sense to compare trends, not absolute article counts. MJ's scaling obviously doesn't allow us to see a trend, so I've produced the following graph.

It's an entirely different pattern. (Note that since article counts are relatively small, there's bound to be more noise in these series.)

One More Thing

Regarding VAERS, MJ says:

As for VAERS, it wasn't meant to do this sort of tracking nor is it an accurate measure of all children who had a reaction to a vaccine - especially for controversial relationships like autism.

I didn't look at a measure of "reactions" – and it's not clear if reports with "autism" as a symptom are even valid. I looked at submission counts. These are clearly a valid proxy of new parents recruited into either an anti-vax mindset or vaccine litigation.

IDEA's Bass Diffusion Model

2010-04-16T09:39:00.000-07:00

In the previous post I argued that a Bass Diffusion Model fits the administrative prevalence of autism in California remarkably well, and made specific predictions based on this observation. You can think of a Bass Diffusion Model as a word-of-mouth or an adoption-of-innovation type of model.

For the sake of completeness, I will now present a couple of Bass models I derived for the administrative prevalence of autism at the US level, based on data from the Department of Education, otherwise known as IDEA data. The following is a graph of the 6-17 IDEA prevalence along with Bass model hind-casting and forecasting all the way to 2030.

Model # 2 (the red line) is the one I prefer in this case. (I'll explain why shortly.) It predicts that prevalence will eventually level off at almost 1.1%. This is completely plausible, not only because that's roughly the new consensus prevalence of ASD, but also because Minnesota is already there.

I also find it to be a fascinating prediction of the model. If you recall, a Bass model predicts a maximum prevalence of about 0.65% (at most 0.7%) for children 6 to 9 in California DDS. This absolutely makes sense. California DDS is not like IDEA. DDS does not find every autistic person to be eligible for services, and not all developmentally disabled Californians pursue eligibility with DDS. So, in my view, a Bass model makes predictions that are remarkably consistent with our current reality.

If the models are correct, by 2013 IDEA prevalence should just have surpassed 80 in 10,000. Additionally, a leveling-off trend should not be completely evident yet. It may be slightly noticeable. Meanwhile, in the California report of Q4 2013 (and let's hope they produce data equivalent to that of reports currently available) a leveling-off trend should already be evident in the 6-9 cohort.

Technical Details

For formulas and variable names, see the California post. Parameters of both models are, again, estimated by means of genetic programming. For model # 1 I simply tried to fit the 1993-2007 prevalence series without any modifications. The resulting parameters were:

p = 4.808·10^-8
q = 0.22
t₀ = 1938.809 (year)
m = 118.32 (per 10,000 population)

Model # 2 is based on the observation that IDEA practically did not have an autism category prior to 1993. However, once the category was introduced, many children would've been put in the category all at once. It's like introducing a product into the market that already has a number of owners. So I performed the calculation by reducing the prevalence in all report years by 3.864, which is the 1993 prevalence. Hence, t₀ should be equal to 1993. The parameters actually derived by the code I wrote were:

p = 0.0072
q = 0.222
t₀ = 1993.03 (year)
m = 105.992 (per 10,000 population)

Note: In this case, model results must be added to 3.864 to obtain the projected prevalence.

The rationale of the derivation of Model # 2 makes sense to me, and that's why I prefer it. However, there's not a huge difference between the models.

Addendum (4/16/2010)

I forgot to mention that the correlation coefficient R for both models was approximately the same: 0.99993. This is exceedingly good, and better than the fit for CalDDS.

The Administrative Prevalence of Autism is a Bass Distribution

2010-04-15T10:08:00.000-07:00

There's a new paper on the rise of autism diagnoses in California: Liu et al. (2010). Its findings are probably not surprising to my readers, I would imagine. It finds that children living in close proximity to a child already diagnosed with autism are more likely to be diagnosed with autism themselves. This reminded me of an observation I made once about administrative prevalence growth curves. They look like "word of mouth" growth curves, and they are devoid of abrupt "step" changes.

[Note: Also see Dr. Novella's take on Liu et al. (2010).]

It occurred to me to try to model this "word of mouth" type of process. The idea is that a model could be helpful in making predictions and understanding the reasons for the observed rise in prevalence ascertained from passive databases. I even wrote a simulation, and had some preliminary results. As much as I like to come up with my own models to explain things, however, I'd much rather use a proven model. So I kept trying to find an existing solution to this sort of problem.

Eventually I found something that looked very promising: The Bass Diffusion Model. This is a highly successful model that has been applied to the acquisition of durable goods, adoption of innovations, and more recently, the growth of social networks. Evidently, the model is unheard of in the autism world, and practically undiscovered in epidemiology in general. Interestingly, though, Liu et al. (2010) repeatedly uses the term "diffusion of information" to explain its findings.

Mathematically, the Bass Diffusion Model can be expressed using the following formula.

Model variables and parameters – adapted for our purposes – are defined as follows:

N(t) is the administrative prevalence of autism at time t.
t is the time, typically represented by a year.
t₀ is the initial time, when prevalence is zero.
The coefficient p is called "the coefficient of innovation, external influence or advertising effect" (Wikipedia.)
The coefficient q is called "the coefficient of imitation, internal influence or word-of-mouth effect" (Wikipedia.)
m is the maximum administrative prevalence of autism – i.e. the prevalence value reached when the prevalence curve finally levels off.

In order to apply it to real world data, we need to derive the parameters of the model. This is fairly difficult because it's non-linear. So I used genetic programming to estimate the parameters that produce the best fit between the model and observations. I did this with the 6 to 9 California DDS prevalence, and I "trained" the model with two different time ranges. I will later explain the rationale.

For 6-9 prevalence data between 1993 and 2007, the correlation coefficient was 0.9994, and the parameters were:

p = 5.959·10^-8
q = 0.253
t₀ = 1943.246 (year)
m = 65.395 (per 10,000 population)

When trained with prevalence between 1986 and 2007, the correlation coefficient R for the model fit was 0.9991. The resulting parameters were:

p = 1.415·10^-8
q = 0.237
t₀ = 1934.1 (year)
m = 70.45 (per 10,000 population)

Anyone familiar with modeling and/or statistics will tell you that a correlation coefficient of 0.9994 is not only good, it's actually hard to believe. It might even be beyond law-of-physics good.

The following is a graph of the observed 6-9 prevalence in California DDS, along with the 2 derived Bass models, with forecasting all the way to 2020.

If the first model turns out to be correct, as early as Q4 2013 the 6-9 prevalence should be very close to 60 in 10,000, and a leveling-off pattern should already be evident. The first model predicts that prevalence will level off when it reaches 65.4 in 10,000. The second model predicts it will top at 70.5 in 10,000. I think these projections are reasonable, considering California DDS has eligibility restrictions. But we'll just have to see if they pan out.

Limitations

The main limitation of the models derived in this post is that they assume m is constant. In reality m could change, not just because of possible environmental factors, but also because of changes in diagnostic criteria, and changes in eligibility policy. That's why I used a shorter time range to derive the model I actually prefer: the one based on the 1993-2007 prevalence series only.

The Media's Interest in the Anti-Vaccine Movement

2010-04-13T06:03:00.000-07:00

Over at Science-Based Medicine, Dr. David Gorski has written a post about email exchanges he had with a reporter named Steven Higgs. I exchanged some emails with Dr. Gorski myself, prior to his post, about some rudimentary data analysis Mr. Higgs had done with special education counts. I sent Dr. Gorski a number of graphs in order to illustrate Mr. Higgs' interpretation errors. Do check out the post.

What I actually wanted to discuss here is Dr. Gorski's observation about the apparent lack of anti-vax activity in Autism Awareness Month.

The anti-vaccine movement’s usual suspects haven’t been all over the mainstream media, as they usually are this time every year, often as early as April 1 or even March 31.

Could the anti-vax movement be losing steam? Are they regrouping? I have no idea. But we can check how much interest the media has had in the anti-vax movement in the last 13 years.

This is a graph of Google News Archive "autism vaccines" articles per 100 "autism" articles. Google News Archive has its own graphs where you can sort of see the trend as well, but it's methodologically better to look at article counts relative to "autism" articles, for obvious reasons.

I also added a VAERS "autism" submissions series to the graph. Clearly, media coverage of anti-vax speculation correlates well with VAERS submissions. See also how it compares to Sullivan's graph of the number of autism cases before the vaccine court.

2008 was a good year for anti-vaxers, given that it was the year when the Hannah Poling story broke, and Jenny McCarthy started to publicize her autism books on TV. But if you look at the graph, 2008 provided only a marginal boost. I doubt anti-vaxers will have another 2008 ever again.

That's the reality of the situation, even though in the blogsphere we seem to perceive things differently sometimes. Anti-vaxers often talk as though they are "winning the debate." Next time you find an anti-vaxer who says they are winning the debate, ask them what they are basing that opinion on, and send them over to this post.

Blogger Shuts Down John Best?

2010-02-18T09:47:00.001-08:00

Note: This post is about John Best Jr. from Hew Hampshire, owner of the Hating Autism blog, AKA Fore Sam. The name John Best is a fairly common name, evidently.

[UPDATE 2/18/2010: No such luck. His 3 blogs are back. John Best claims he showed Google "who they are messing with." It's probable that people have flagged his blog so much over time, that a Google employee decided to shut down his blogs, but I'm guessing it doesn't take much to get Google to unblock blogs.]

After years of blatantly violating Blogger's Content Policy, John Best's blog, Hating Autism, has apparently been shut down for good.

I guess it's all part of the Illuminati/BigPharma/Reptilian-Alien conspiracy to control the world's population through vaccines. First Wakefield, then John Best. Next thing you know, the FDA will be raiding the Geiers' house/clinic. One can only hope.

And John, don't even try to comment. I have not changed my comment policy, and as a matter of principle, I will delete your comments, simply because I've said I would. Managing the comments section of a blog with a stated comment policy is not censorship, despite what you'll no doubt contend. What AoA does, which basically consists of arbitrarily disapproving comments in a case by case basis might be closer to censorship, but even that isn't censorship, arguably. I'm sure you'll create a blog somewhere else, so you'll have a new platform for your views, questionable as many people think they are.

Wakefield is not Galileo

2010-01-29T11:05:00.001-08:00

For those who keep trying to invoke the "Galileo gambit" in order to defend Andrew Wakefield, let me explain something real quick. Wakefield is not Galileo for two key reasons:

1. Galileo was right.

2. Galileo did not engage in scientific misconduct.

It's as simple as that.

A Word About Hertz-Picciotto & Delwiche (2009)

2009-11-24T06:45:00.000-08:00

The recent Chicago Tribune Articles have resulted in a flurry of reactions, particularly from AoA. I'd like to discuss just one of them in this post. Kent Heckenlively was complaining that the Chicago Tribune reporters did not give weight to any of the documentation he had provided them. Specifically, to support the assertion that we are in the midst of an autism epidemic, Heckenlively cited a press release by the MIND Institute.

Why cite the press release and not the paper? Well, that's because the conclusions of the paper said the following.

Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

A true increase... remains unclear. Is that clear enough?

The paper is titled "The rise in autism and the role of age at diagnosis." I'll refer to it as Hertz-Picciotto & Delwiche (2009). I've already criticized multiple aspects of the paper (last time here) but I'd like to say a few more things about it.

The conclusions of the paper seem refreshingly honest, but I'm guessing they are that way simply to get through peer-review. The missing artifacts are not just any artifacts, either. One of the artifacts that did not enter the calculations is key: awareness. It would be nonsensical to assume that awareness of autism has not changed since the early 1990s.

But what did the press release say?

“It’s time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California,” said UC Davis M.I.N.D. Institute researcher Irva Hertz-Picciotto, a professor of environmental and occupational health and epidemiology, and an internationally respected autism researcher. Hertz-Picciotto said that many researchers, state officials and advocacy organizations have viewed the rise in autism's incidence in California with skepticism.

(source)

This is completely at odds with the conclusions of the paper, and I find it quite dishonest. To make it perfectly clear, yes, I'm accusing Dr. Hertz-Picciotto of intellectual dishonesty.

Dr. H-P further states that:

“These are fairly small percentages compared to the size of the increase that we’ve seen in the state,” Hertz-Picciotto said.

Is that even true? The paper finds that a 2.2-fold increase may be explained by changes in diagnostic criteria, 1.56-fold due to inclusion of "milder" cases, and 1.24-fold due to changes in age at diagnosis. If you multiply these factors, you come up with a 4.26-fold increase that may be explained by just these 3 artifacts.

That's 62% of the entire rise the authors were attempting to explain. Maybe 62% is a "fairly small percentage." In this case I'm going to give Dr. H-P the benefit of the doubt and say that she likely didn't know the factors needed to be multiplied. There are no indications in the paper that a calculation of the overall contribution of the 3 artifacts combined was even attempted. I won't even get into statistical uncertainty.

The flaws of the analysis are not what bother me the most, however. Consider this. What is the value of this study? Why was it carried out? If you're trying to determine whether artifacts can explain the rise in autism service classifications in California, and you cannot estimate the contribution of all relevant artifacts, what is the point of the analysis?

Here's an analogy. Suppose you wanted to determine if global warming can be explained by the greenhouse effect. In order to do this, you estimate the contribution of methane, water vapor and nitrous oxide to recent temperature increases, but you leave out CO₂. You conclude that those 3 gases alone cannot explain the entire rise in temperatures, but perhaps that's because you did not consider the biggest contributor to the greenhouse effect: CO₂. Then you tell the media that greenhouse gases cannot fully explain the rise in temperatures.

Wouldn't such a study be better understood as a propaganda effort, rather than a contribution to scientific knowledge?

Someone might complain that Hertz-Picciotto & Delwiche (2009) does contribute to scientific knowledge, because it tells us about the impact of certain artifacts. But does it actually do that?

Take what is perhaps the most important artifact the paper does take into account: changes in diagnostic criteria. What would you do if you wanted to determine the impact of changes in criteria? You might carry out a prevalence study with good case-finding that uses two different criteria on the same population: DSM-IV and DSM-III (or perhaps Kanner criteria.) Hertz-Picciotto & Delwiche (2009) does not do anything that even resembles this. They use data from a separate study, so they didn't even contribute new data. We can't even be sure how well the data from Finland might apply to California. The case-finding of the Finnish study is not necessarily very good either. Plus it's just one data point, with all the uncertainties implied by that.

To determine the impact of inclusion of "milder" cases (i.e. anything that is not "autistic disoder"), what would you do? I think you could evaluate a random sample of CalDDS autistic children and diagnose them with either autistic disorder, PDD-NOS or Asperger's. What the researchers did instead was use data from a separate MIND Institute study where CalDDS children had been evaluated with the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Inventory (ADI.) Are these diagnostic tools even able to accurately distinguish between autism spectrum diagnoses? I'm not aware of any evidence that they do.

In other words, the MIND Institute study is not even informative about the impact of the artifacts it did take into account. I frankly can't see this study as a contribution to scientific knowledge at all. It gives the appearance of being part of a propaganda effort.

Chicago Tribune Articles

2009-11-23T11:54:00.000-08:00

I'm just going to link to the Chicago Tribune Articles below.

What do readers think?

You can probably tell I "stole" those links from Orac. I'll also link to his post:

The Chicago Tribune: Telling it like it is about the antivaccine autism "biomed" movement

I noticed that "biomed" pushers have shown up in comments, and their primary counter-attack seems to be roughly this: "FDA-approved drugs also have serious side-effects!"

They do. Anti-psychotics, especially, can have nasty albeit rare side effects like neuroleptic malignant syndrome. But the biomed people are just trying to change the subject, aren't they?

Feel free to use the comments section to discuss the ethics of FDA-approved drugs for autism. Do the benefits documented in trials outweigh their more serious side-effects? Are there concerns about the evidence of their efficacy? Do we even understand how they work?

False Despair

2009-11-10T11:50:00.000-08:00

What would be the value of telling a parent of a recently diagnosed autistic child that the child will never be able to hold a job, if this is unlikely to be true for a good majority of autistic children diagnosed at present? Is there any? I just don't see it. In fact, I think this would be at least as harmful as telling a parent that their child will grow up to be just like Dr. Temple Grandin.

I was recently told that I shouldn't divulge data that could be interpreted as painting a "rosy picture" of autism. It's not only rude to tell people what they should or shouldn't write about, but this kind of suggestion is quite unreasonable in my view.

Beyond the merits of the idea that it's best to presume competence, I believe one should have realistic expectations based on actual data, rather than vague assumptions based on stereotypes and outdated information of unclear origin.

I also think it's highly questionable to dismiss new findings solely on the basis that they "don't feel right" or because they fail to confirm one's preconceptions and personal experience. This is the very definition of closed-mindedness. (A lot of people seem to think "closed-mindedness" means you are not willing to accept pseudo-scientific claims, but this is simply not true.)

It's important that data is current too. It would be completely dishonest to pretend that autistic children diagnosed today are just like the children who were called autistic in, say, the 1960s. That's simply not a realistic view. I have discussed adult outcome studies in the past, and I think they are relevant, but they need to be understood in their proper context. For example, 61% of autistics born in 1983-1985 receiving services under the autism category in California were identified as having intellectual impairments. Meanwhile, only 27% of those born in 1993-1995 are identified the same say (Gernsbacher et al. 2005; The MIND Institute 2002.) This is despite the fact that California DDS has eligibility restrictions, sometimes interpreted to mean that only persons with "full syndrome" autism are eligible (which is probably an untrue assumption, but it's also the case that not all persons with an ASD diagnosis are necessarily eligible.)

I say this knowing full well that my own son is different to most autistic children diagnosed today, and perhaps more like children who were called autistic in the 1960s. I expect my readers to be similarly capable of distinguishing personal realities from population-level realities. If I divulge data applicable to autistics who don't have intellectual disability, and you have an autistic child with intellectual disability, then the data does not apply to your situation. I think this should go without saying.

If you look at really good paper critiques, you will find a common characteristic: They don't just point out limitations and errors; they explain how the limitations and errors could make the results what they are, in the event that the hypothesis the authors have advanced is incorrect. This typically involves pointing out details the authors have apparently overlooked. For examples of remarkably good paper critiques, see the Photon in the Darkness Blog.

Then you have really poor paper critiques. These come in various flavors. Perhaps the lowest form of critique is the ad hominem circumstantial, otherwise known as an appeal to motive: "I suspect the author is biased, therefore the results of the paper are probably wrong." This is essentially a useless critique, since all authors of all papers could be suspected of having a bias. Some additional criteria is required to make it worthwhile. For example, if a researcher is known to have engaged in substantial scientific misconduct (e.g. plagiarism), then it is reasonable to hold all subsequent works by the same author to be suspect a priori. It would also help to explain how the bias might alter the results. In a hypothetical case, it could be reasonable to speculate along these lines: "Since the study was not blinded, it's probable that researcher bias could have inadvertently altered the results of the assessments." This is a plausible explanation, as opposed to a simplistic insinuation.

Another precarious form of critique is what I'll call the critique by anecdote or personal experience. Example # 1: "How could this global warming theory be true? It was really cold this winter." Example # 2: "I have never seen any autistic adults, and I know 'em when I see 'em, so this really expensive and exhaustive prevalence study just cannot be right."

BTW, how is it that David Kirby knows 'em when he sees 'em, if he's never seen them at all?

There are some reasonable forms of critique that don't require much effort. Appealing to the unreplicated status of a result is one example. This is a good convention that is part of the scientific method. "The result could be of interest, but let's reserve judgment until it's replicated."

Some people have said they don't yet buy the prevalence result from the NHS study because the study is unreplicated. In this particular case, I believe they are mistaken. For one, there's considerable prior evidence that autism can be found in various populations of adults where previously it was largely unrecognized. Furthermore, Kadesjö et al (1999) found a prevalence of 1.21% among children born in 1985 in the small town of Karlstad, Sweden. The "children" happen to be 24 now. If the study were done today, on the same exact cohort, it would be considered an adult prevalence study. In this sense, the NHS study may be considered a replication.

Let me make this clear. There's simply no excuse to continue to claim that autistic adults are a non-significant population compared to the population of autistic children. Doing so is just another form of denialism.

Jonathan's Completely Dishonest Attack on My Latest Posts

2009-11-04T11:04:00.000-08:00

Dear reader: Please go read Jon Mitchell's utterly dishonest attack on my two latest posts. It's titled Some neurodiversity potpurri.

First of all, I'd like to inform Jon that even though I've said this blog is pro-neurodiversity, I'm not a leader of neurodiversity proponents or anything of the sort. All my opinions are personal and should in no way be seen as opinions put forth by something called neurodiversity. It's very uncool to try to use what I say (or what other bloggers say for that matter) as a way to attack the neurodiversity philosophy as a whole.

Now, the most outrageous misrepresentation of what I said is the following:

I see that Joseph of the autism natural variation blog has decided based on one published report based on the statuses of only 19 people that adults with autism don't have problems with employment nor with marriage.

I could've predicted this was going to be Jon's response, and it's not the first time he's tried to misrepresent what I've said. I'll leave statistics for the end of the post. I want to discuss the misrepresentations first.

What I said about lack of employment is that (1) figures used in prior estimates appear to be exaggerated; (2) that it would seem adult autistics who live in private households across the UK are largely productive individuals who contribute to the economy in a manner similar to their non-autistic peers.

I never said autistic people don't have problems with employment. All I said is that autistics are largely employed. There's a big difference. The data can't tell me anything about specific problems autistic people have with employment, and I have no doubt there are a variety of problems.

I stated that there appear to be some differences in the employment rates of autistics and non-autistics, but the authors didn't find them statistically significant. This is what the authors said:

No significant variation in rate of ASD by economic activity status was found.

That's a true statement. If you want to lash out at the authors for daring to say that, be my guest.

The misrepresentation of my claims about marriage is even more outrageous, since my post clearly said in bold that autistic people in the UK are apparently about half as likely to get married than non-autistic people.

In the past Joseph presented some statistic saying that 25% of autistics were employed. As far as I can tell he neglects to mention any source or reference or link for this statistic in any post on his blog.

OK, that one is my fault. I failed to cite a reference in the old post, and I don't even remember the exact reference. I'm usually careful about that sort of thing. If you're interested, Howlin et al. (2004) reports that almost one third of the adult autistics in that study had some form of employment. Szatmari et al. (1989), a follow-up of adults without intellectual disability, reports a rate of employment of 50%.

So Joseph seems to imply that autistic persons are making just as much money as an NT.

I never talked about salaries, and if you made inferences from my post in regards to salaries, that's really not my fault. The study does have data on salaries. The summary of the findings was the following.

While the likelihood of having ASD appeared to increase among men as household income decreased, this was not significant (when analysis was run using household income
grouped into tertiles).

In this case, again, there might have been some differences, and if you look at the numbers in Table 2.3 it would be difficult to deny that autistics are making somewhat less money than non-autistics. But in a statistical sense, the numbers cannot tell us for sure that there's a difference.

So again, we have ND trivialization of an autistics inability to get married or make a living.

To Jon Mitchell, any figures and facts that don't agree with his personal views and experiences with autism constitute "trivialization." Reality doesn't exactly matter if it doesn't jive with what he sees as the necessity of continuing to have a grim worldview.

The Stats

Jon doesn't like the stats of the study because:

The authors of the reports extrapolated this number 19 to the greater population claiming that 1% of adults in the UK in private households have autism. However this was just a guess based on mathematical projections.

For starters, saying that the result is a "guess" is clearly an inaccurate characterization, and I've explained this previously. Many of the 19 autistic people identified must have been assigned a probability of selection that is less than 1.0 in phase 1. For example, if 10 of the 19 autistic people had been assigned a probability of 0.25, then clearly there must have been about 40 autistic people in the original group who were assigned a probability of 0.25. This is a probabilistically sound projection, not a "guess." (It's a bit more complicated than I explained, because there's also some weighing due to participation refusal based on some household variables.)

Now, no study can prove a negative, i.e. that there's absolutely no difference between the characteristics of two groups (this is the "null hypothesis.") All you can say is that you found the null hypothesis cannot be rejected. Of course, some studies are better able to rule out small differences as opposed to big differences, with statistical confidence.

It does matter that only 19 autistic people were found, but what mostly matters is the overall sample size. In Table 3.6 they indicate the confidence interval for ASD prevalence is 0.5% to 2.0%. They list the sample size as 2854 and the "weighed" sample size as 7358.

There are prevalence studies smaller than this, and existing data on the characteristics of autistic adults are usually based on comparable or smaller samples of autistic people.

The confidence interval is actually what you would get if you had found 7 autistic people out of 700 in a standard sampling (and I have some thoughts about implications of this, but I won't go into them here.)

Prevalence of ASD among adults who are employed was 0.9%. The confidence interval would be roughly equivalent to what you'd get if you had found 5 autistics out of 555 people, or 0.4% to 2.1%. (About 75% of all adults are employed in the UK.)

So on the one hand you have a prevalence of [0.5% - 2.0%] and on the other hand you have a prevalence of [0.4% - 2.1%]. Is there a difference? We just can't say there is.

Marriage Among Autistics, Or Why the NHS Study Obliterates CADD

2009-11-02T08:00:00.000-08:00

In the previous post I discussed data that contradicts the common belief that autistic adults are largely unemployed.

In this post I want to discuss marriage. Marriage, again, is something that is considered very rare among autistics. It's a stereotype like any other stereotype, of course, but it's not an entirely unjustified one.

Of all the autistics Leo Kanner wrote about, I believe only one (Robert F) is known to have married. Said Kanner:

The contacts thus established led to the discovery that the boy-meets-girl issue was paramount in the talks of the companions. Again, there was a vaguely felt obligation to "conform." Those attempts were sporadic and short-lived. The "explanations" offered indicated that there was not too much displeasure with the absence of any real involvement. Henry C. reported that he was single, that several girls "had hoped to change that" but that he had "no desire to get tied down for a good long time." Thomas G. declared categorically that girls "cost too much money." Clarence B., who "socialized" with a girl for a short time in college, stated that he "ought to get married but can't waste money on a girl who is not serious." Bernard S. was said to have approached a girl once for a date "in a very negative way" (inviting rebuff). Fred G. "experimented" once with a double date arrangement (never repeated). George W. made things easy for himself by deciding a priori that girls were not interested in him. Sally S., the only girl in our group, once asked seriously at 23 years of age what she ought to do if ever she fell in love with someone, an experience she had never had before. She said: "I have never had the interest in boys most girls my age have." At 30 years, she dated a man for a few months but gave this up because she was "frightened by any intimacy."

(Kanner et al. 1972)

In several outcome studies we see the same pattern. Of the 16 autistic adults without intellectual disability from Szatmari et al. (1989), only one was married, even though 4 were dating regularly. Average age at follow-up was 26.1. From a recent outcome study out of Utah involving 41 autistic adults, we learn that only "a few" were married.

One problem with these findings is that adults in outcome studies are young adults. Additionally, we should not assume that diagnosed autistic adults, first identified when they were children, are representative of all autistics from the general population, known and unknown. Current understanding of autism is different to what it was in the past.

Once again, the NHS adult prevalence study proves useful in addressing these sorts of limitations in available data. The report tells us that the prevalence of ASD in three marital status groups is as follows.

Married/cohabitating: 0.5% Single: 2.5% Widowed/divorced/separated: 0.6%

There's also information on a "base" population that is not exactly representative of the general population, but it's probably close enough to being representative that it can be used to come up with estimated proportions of autistics and non-autistics in each of the categories.

	Married/Cohabitating	Single	Widowed/divorced/separated
Autistics	33%	57%	10%
Non-Autistics	61%	22%	15%

Data for men only:

	Married/Cohabitating	Single	Widowed/divorced/separated
Autistic Men	30%	63%	7%
Non-Autistic Men	61%	26%	14%

There are some differences. Autistic people in the UK are apparently about half as likely to get married than non-autistic people. I would not say the characteristic is diagnostic, however.

I should point out once more that the study only looked for autistic adults who live in private households. The data will likely change somewhat when autistics who live in "communal establishments" are considered.

Implications For CADD

I've previously criticized the concept of Cassandra Affective Deprivation Disorder (CADD). It's a pseudo-scientific, made-up and damaging idea to the effect that autistic people make for terrible significant-others and spouses to such an extent that they can cause their partners to develop psychological problems and health issues, even cancer.

If CADD had an ounce of truth to it, you'd expect divorce to be rampant among autistics. Heck, you'd expect autistics to widow more often, if the claim about effects on health were true.

Yet, the divoced-to-married ratio for autistics is 0.29, whereas the same ratio is 0.24 for non-autistics. (It's 0.24 vs. 0.22 for men only.) That's a minor difference, not significant by any stretch of the imagination.

It's clear that the reason a lot of autistic people in the UK are single is not because they fail at relationships. It's because they are not good at starting relationships.

The claim that autistic marriages fail much more often than expected is mythical, evidently. Nevertheless, many web pages state the following: "Dutch research suggests that the divorce rate for people with Asperger syndrome is around 80 per cent." Interestingly, this exact phrasing appears throughout the web, as if it had been copy-pasted. I have tried to locate the original source of the claim, to no avail. One person says they "lost the link."

The claim appears in a book by Ashley Stanford for people whose significant-other has Asperger's: "Preliminary research performed in Holland suggests that the divorce rate for couples in which one partner has AS may be as high as 80 percent (Relate leaflet)."

The Relate leaflet in question appears to be this webpage by none other than FAAAS. FAAAS, for those who don't know, is an organization of people who moan about their "frustrations" with their adult autistic relatives. FAAAS, not surprisingly, is connected to Maxine Aston of CADD infamy.

The claim that appears in the Relate leaflet is exactly the following:

For the partner of a person with AS, their bewilderment at the puzzling behaviour of their spouse can cause deep distress and a breakdown in their health. Inevitably this means that there is a high divorce rate amongst marriages where one partner has AS. Research in Holland suggests that this is as high as 80%, and research recently done in the UK is due to be published next year.

It's entirely unsourced. I'm currently skeptical as the the existence of the famous Dutch research.

Unemployment Among Adult Autistics in the UK

2009-10-27T06:25:00.000-07:00

I've previously criticized estimates of the "costs of autism" to society. The whole rationale of coming up with such estimates is objectionable to begin with, but I've also criticized what appear to be exaggerations in the figures that form the basis of these analyses.

One key component of such estimates is "lost productivity" due to lack of employment and related metrics. I've pointed out that old data on the employment rate of adult autistics no longer applies. If you want to come up with cost estimates based on an ASD prevalence of 0.6% or 1%, you have to know the employment rate that corresponds to the ASD criteria that results in said prevalence. You can't just look at diagnosed adult autistics, and hope they are representative of all adult autistics, especially considering autism has been very much under-recognized in the past.

Of course, data that addresses this objection was not available until recently. That did not stop me from coming up with a guesstimate, though. I suggested that perhaps 70% of autistic children diagnosed today might end up being employable a generation from now.

I think it was clear in the blog post that this was a rough estimate extrapolated from other trends. The estimate, predictably, was met with accusations that I trivialize the challenges of autistics and so forth, specifically from Jon Mitchell. It seems that whenever I do some math or look up figures in the literature, I'm automatically engaging in trivialization.

Jon was of course "mystified" as to how I came up with the 70% figure, and implied that it's unbelievably high. Whenever he wants to snipe at me, this is the one thing Jon likes to bring up. He also proclaims I'm "one of the more prominent ND bloggers" so he gets to criticize not just me, but he probably thinks he's criticizing the entire neurodiversity movement in the process.

Readers are probably aware by now that the UK National Health Service recently released its first report on a prevalence study of autism in adults living in private households. The report includes some data on employment, but all the report says about it is this:

No significant variation in rate of ASD by economic activity status was found.

That's interesting enough by itself, but let's look at data from Table 2.4. There are 3 groups of persons considered in the study: Those in employment, those who are unemployed, and those who are economically inactive. The following is the prevalence of ASD in each group:

In employment: 0.9% Unemployed: 1.6% Economically inactive: 1.5%

The report also gives a "base" population, which consists of all persons from phase 1 who had been assigned a near-zero probability of ASD. You may recall that 7461 respondents were interviewed in phase 1. The base population consists of only 5998 persons, divided as follows:

In employment: 4492 Unemployed: 291 Economically inactive: 1215

The base population is not exactly representative of the general population (it's more "non-autistic" than normal if you will) but it will have to do. I will use it to estimate rates of employment and unemployment in autistics and non-autistics, as shown in the following table.

	In Employment	Unemployed	Economically Inactive
Autistics	64%	7%	29%
Non-Autistics	75%	5%	20%

There are some differences, but the study authors didn't find them to be statistically significant. In any case, it would seem that adult autistics who live in private households across the UK are largely productive individuals who contribute to the economy in a manner similar to their non-autistic peers.

Of course, this particular report doesn't tell us about autistics who live in "communal establishments." I've suggested that when all is said and done, pooled prevalence of ASD might turn out to be around 1.3%. Even if all autistics who live in communal establishments are considered unemployed, total unemployment among autistics might be around 35%.

Is It More Like 1.2% to 1.5%?

2009-10-08T14:01:00.000-07:00

Over two years ago I wrote a post titled Moving Toward a New Consensus Prevalence of 1% or Higher. At the time the prevalence of ASD was generally considered to be 0.6%. If you Google it, you'll find this figure is still the one that's cited most frequently. At present, no one has come out and precisely said the consensus prevalence has been revised to 1%, but I think that's pretty much where we're at. Consider what Roy Richard Grinker said recently to Time Magazine.

"It provides what scientists call convergent validity: no matter how you shake the bushes, you come up with this 1%," says Richard Roy Grinker, an autism researcher at George Washington University who has worked to determine ASD prevalence in South Korea.

(source)

Two years ago, and even long before this – as suggested by Lorna Wing – there were already some indications in the literature that 1% might be a more accurate figure. It was not a lucky guess or anything like that. My concern, which came to pass, was that as study methodologies evolved and awareness improved, the public would be frightened by what might appear to be a real increase in the prevalence of autism, with no end in sight. Ms. Clark (you remember her, right?) speculated that the process might be very gradual, with people getting increasingly surprised, and finally collapsing from exhaustion. It turned out to be a little more quick and relatively painless, at least so far.

I believe the question at this point is whether we've reached a plateau. Is prevalence going to stabilize at 1%? Have identification methods been pushed to their limits? Is the level of awareness (important in phone surveys and passive systems) the highest it's ever going to be?

I think that's possible, provided the same criteria and diagnostic tools continue to be used. But I gotta tell you, I have some reasons to believe we haven't seen the end of this just yet – not very many reasons, admittedly, but some. We might find that a more accurate number for prevalence is a little bit higher, perhaps 1.2%, or even 1.5%.

I'm not going to discuss cultural trends or the inherent subjectivity of psychiatric diagnoses, simply because this would be difficult, if not impossible, to quantify. But I do want to discuss case finding in this post.

What brings this about is the recent NHS prevalence study of autism among UK adults. The study has already been discussed by Anthony Cox, Kev Leitch, Sullivan, Catherina, and others. It found that 1% of adults living in private households had ASD. This result should come as no surprise to regular readers of this blog, particularly those who have read High Prevalence of Autism in Adults.

The NHS study did not look for autistic adults living in "communal establishments" (institutions.) According to the NAS, the report is "the first part of a much more detailed research project" (source) so I have little doubt there will be a follow-up that looks for adults in institutions. What will happen then? The NHS report says that 2% of all adults live in communal establishments. I believe pooled prevalence from both studies might turn out to be around 1.3%. It will easily be 1.2%.

Of course, there's some room for statistical uncertainty in these figures, and we'll have to wait for replications that use roughly the same methodology to see how the figures converge. But taking them at face value, 1.2% or 1.3% are a little higher than might be expected. Shouldn't the prevalence among children in the UK be even higher than this? Presumably, diagnostic stability to adulthood is not 100%, and autistics might have a slightly lower life expectancy than normal.

It's important to understand that the NHS study is not only the first of its kind, but also one with a methodology that is both novel and innovative. The methodology is designed so that the prevalence of ASD can be estimated even if the screening tools available to the researchers are unreliable and not well researched. The method does not require knowing how a screening tool performs a priori. It's preferable that the tools perform well – it helps with statistical power – but this is not a requirement per se.

I realize most people can't seem to make heads or tails of the methodology of the NHS study. I've tried to explain it with examples (e.g. here). You have my assurance that it's probabilistically sound. This can be proven mathematically.

That's not to say the methodology doesn't have any problems. Like any new methodology, it will be scrutinized in the scientific literature. Potential issues will be identified. Guidelines on how the selection probabilities should be defined will be proposed, etc. This is generally acknowledged by the authors:

The present methods are therefore felt by the authors to be to the highest standard achievable at present. However this is a first methodological development of its kind in the autism field and it is to be hoped that future surveys could build and improve on the present procedures.

Don't be surprised, though, if this methodology becomes a sort of standard that is subsequently used in studies of children, and not just those dealing with autism prevalence. Don't be surprised either if this in turn results in slightly higher prevalence figures.

The methodology of the NHS study is such that it doesn't leave any autistics behind, so to speak. It produces only an estimate, but it's an estimate that includes all autistics in principle (if we discount participation refusal biases.) A study that relies on a conventional screening process, on the other hand, can easily leave out autistics who did not pass the screening.

It's not easy to know a priori how many autistics a screening tool might miss. Suppose you evaluate 1000 random persons with a reliable diagnostic instrument and also a screening tool you want to test. You might identify 10 autistic people by means of this undoubtedly expensive endeavor. Suppose 5 of them also passed the screening. Can you assume 50% of autistics are missed by the screening tool? Not really. With statistical confidence, you can only say that anywhere from 20% to 80% would pass a screening.

Sure, you could test a much larger group of previously identified autistics. But how do you know this group is representative of all the autistics you intend to identify in a subset of the general population? This is clearly a limitation of pre-NHS methodology.

In the old days, they didn't even take into account the likely unreliability of screening methods. In Lotter (1966), for example, they just provided a questionnaire for teachers to fill out and only considered children reported as having "certain types of behavior." At various other levels of screening, it was always assumed the screening was perfect.

This brings me to a relatively recent study, Kadesjö et al (1999). It reported the prevalence of ASD was 1.21% in the small Swedish town of Karlstad. All children involved were born in 1985. What's interesting about this study is its intensity. The primary author personally evaluated 50% of 818 children attending normal classrooms. Unfortunately, it was a small study. They found 10 autistic children out of 826. If they had only found 9 autistic children, prevalence would be 1.1%. If they had found 11 children, prevalence would be 1.3%. I can't help but wonder, though, what might have happened if 100% of the children had been evaluated. Is it possible that at least one more autistic child would be found among the remaining 409 children who were not assessed for autism past the initial screening?

To summarize, diagnostic criteria and diagnostic methods are not the only thing that matter in a prevalence study. Case finding is also crucial, but now the NHS has introduced a methodology that could make case finding practically a non-issue.

Why is it so difficult to find the "autism gene"?

2009-05-16T15:57:00.000-07:00

There was media coverage recently about the discovery of the "first common" set of autism gene variants. The alleles are apparently found in 65% of autistic people. What's interesting is that they also occur in about 50% of non-autistic people. (Some sources say 60%.)

That doesn't sound like a finding that, by itself, could be practically applied to the genetic screening of autistic people. I'm not too worried about that. Additionally, autism-related studies of this sort don't replicate a lot of times.

It seems to be a very difficult problem. Why is that? I'm sure different people have different views about this.

What I was wondering is whether experts dealing with a similarly elusive problem could provide some insights of note. The problem I'm referring to is that of finding the "race gene." The following are the recommendations regarding race and genetics by the National Human Genome Center of Howard University.

1. When the human species is viewed as a whole, underlying genetic variation and expressed physical traits exhibit gradients of differentiation, not discrete units. Therefore, modern extant humans do not fracture into races (subspecies) based on the modern phylogenetic criteria of molecular systematics. 2. The biological “boundaries” between any human divisions (groups, populations, nationalities) are circumstantial and largely dependent on what traits are chosen for emphasis. 3. The demographic units of human societies (and of the U.S. census) are the products of social or political rules, not the forces of biological evolution. The names and characteristics of demographic groups can change and have changed over time. 4. Group differences in health parameters are not encoded in the human genome as part of an evolutionary pattern of divergence. Thus, differences in health or disease cannot be treated as causally related to ethnoancestral groups. 5. Genotype-environment interactions are more important in explaining group differences in health than genotype, environment, or a factor called “race”. 6. The non-existence of human races (subspecies) does not mean the non-existence of racism. Racism is the structured systematic oppression against individuals and groups defined based on physical traits that reflect an extremely limited fraction of the human genome. Racism must be addressed. 7. Individuals cannot be treated as representative for all those who physically resemble them, or have some of the same ethnohistorical ancestry. Ancestries of individuals and groups should be ascertained in order to evaluate differential expression of genetic effects.

(source)

I thought that sounded quite pertinent.

I'm not saying that it won't ever be possible to fairly accurately distinguish an autistic person from a non-autistic one by simply looking at a genome sequence. As someone with a Computer Science background, I can theoretically speculate that someone will figure out a method eventually. I just don't think it will get done by simply looking for alleles that represent statistically significant "risk" factors.

See also: Race and Genetics at Wikipedia.

Another Way to Tell the "Epidemic" in California is Bogus

2009-05-08T11:04:00.001-07:00

There's been some renewed California "epidemic" talk recently because of a report released by California DDS (this one) despite the usual DDS disclaimer to the effect that report numbers don't represent epidemiological counts of all autistic persons in the state. Kristina discussed it and there's been some media coverage as well, with the usual Rick Rollens scare-mongering about an upcoming surge of autistic adults that the state of California allegedly doesn't have any experience dealing with. There are a number of inaccuracies and faulty assumptions in the media coverage of the report, to be sure, but I wanted to focus on one particular claim found here:

The percentage of people with both autism and mental retardation has dropped significantly, a trend that may provide clues for those trying to solve the autism puzzle.

That's not stated accurately, but in fact there has been a gradual drop in the prevalence of mental retardation within the population of recognized autistics, at least for the last 17 years. See page 20 of the report.

This is a well known fact, or at least I'd like to think it is. I've discussed it several times previously (here, for example.) It is mentioned in Gernsbacher et al. (2005) as well.

I'm sure broadening ascertainment denialists can find ways to rationalize this finding. But what if I told you that the phenomenon is not only a time-based phenomenon? It can also be observed when you compare one regional center to another. That is, regional centers with a higher administrative prevalence of autism will tend to have a lower proportion of autistics who also have a classification of mental retardation.

You know a chart is coming, but as usual I'd like to be clear as to where the data comes from, so anyone reading can double-check if they so wish. I'm using a file provided by California DDS upon request, named CDERQtrData.zip. It only goes up to January, 2006, but it contains more autism-specific information for each regional center than you normally find in the regular report. I don't have population data for each regional center (and gathering that would be a bit much for a blog post) but I will use the Autism-Epilepsy ratio as a proxy of administrative prevalence. The administrative prevalence of epilepsy in California is roughly stable (just below 0.1%) so dividing the autism caseload by the epilepsy caseload of a regional center should provide us with an adequate proxy of the administrative prevalence of autism.

The figure demonstrates an inverse association between the Autism-Epilepsy ratio and the proportion (%) of autistics who also have an MR (or unkown MR) classification. The downward trend is statistically significant with 99.6% confidence.

Now, you'll note the distribution of the dots in the chart is fairly random. I wondered why that might be, especially why the Central Valley regional center would have a low administrative prevalence of autism and a low proportion of autistics with MR.

The Central Valley RC has 9,284 clients with mental retardation as of January, 2006. That's comparable to other big RCs. Of all individuals with MR, only 247 (2.7%) also have an autism classification. This is ridiculously low. I'm sure that if someone went to the Central Valley RC and screened the individuals with an MR classification, they would find that a lot more than 2.7% of them are also autistic.

It's generally understood that there's been increasing recognition of autism in the population without mental retardation. This is what they call HFA. What's not so intuitive is that there's also been increasing recognition of autism in the population with mental retardation. Clearly, regional centers have different levels of recognition across both populations. In average, 7.7% of persons with mental retardation will have a classification of autism in California (which is still rather low.)

Let's look at what the result would be if we were to adjust the autism numbers under the assumption that every regional center should have a level of recognition of 7.7%.

That's a lot more clear, isn't it? This suggests that differences in the recognition of autism in the population with MR across regional centers are an artifact.

Thought Experiment

Imagine there's a hypothetical regional center where recognition of autism has gotten out of hand, to the point where every person who resides in the area served by the RC is classified as autistic by it. In this case the Autism-Epilepsy ratio would be about 1,000.

You'll note the first chart above has a power regression model (the formula on the upper right.) The type of model is theoretically justifiable, and I can discuss that on another occasion.

y = 32.235 x^-0.4525

In the model, x is the Autism-Epilepsy ratio and y is the proportion of autistics with MR.

So what if x is 1,000? This model predicts that the proportion of autistics who have MR would then be 1.41%. This is basically what you'd expect for the general population. In other words, DDS data is entirely consistent with a cultural explanation of the differences in administrative prevalence of autism between regions.

Dr. Jay Gordon Caught Making Stuff Up?

2009-04-27T10:48:00.000-07:00

Just when I thought I wouldn't encounter better examples of the intellectual bankrupcy of anti-vaxers, comes Dr. Jay Gordon, pediatrician to Jenny McCarthy's son, with the following anecdote:

I just saw an eight-month-old boy who got two vaccines then lost his language, motor skills, reaction to his own name and responsiveness to his 3 year old sister. This all happened three hours after a DPT/HIB combination. All previous observation and video of this little boy is normal. Lots of great video of a vibrant, talkative happy baby. He has autism now. No proof, but the temporal proximity of the regression to his vaccines is daunting to those of us who would like more rigorous proof rather than just a collection of hundreds of pieces of anecdotal evidence. Tempting to assume causation even if only this one case/child. Just thought you'd want to know. I usually see these kids in my office months or years after the event the parents think caused the problems. I have read hundreds of emails and spoken to thousands of parents who are certain that vaccines triggered or mightily contributed to their children's autism. Not this time: This family came to my office just days after the vaccines, distraught that he was no longer talking, smiling, acknowledging his sister or his mom and dad and was flapping his hands a lot.

(Respectful Insolence - Comment)

Don't worry. I waited for confirmation from Orac before writing this post. Some people doubted that was actually Dr. Jay, but it is. Since he posted at 00:44 Pacific, there's some speculation he might have been drunk, but who knows.

That is monumentally absurd, isn't it?

First of all, who in the hell diagnosed an 8 month old with autism? That simply can't be done. Even an 18 month diagnosis is pushing the envelope.

Then we're supposed to believe an 8 month old "lost his language" and that this was noticed in a matter of 3 hours. Typically, 8 month old babies do not talk. This is completely normal.

In so far as responding to his own name, this is possible for an 8 month old. The "name test" is supposed to be done on the baby's first birthday, however (source).

Eight month old babies have little in the way of motor skills that they could noticeably lose, unless the baby becomes paralyzed or something like that. A baby of that age can't yet walk. He should be sitting by then. In any case, loss of motor skills is unrelated to autism, and in fact should be cause to consider explanations other than autism. If it was a really obvious loss of motor skills, I'd think the baby should be rushed to a hospital, but instead the parents decided to see Dr. Jay again in 3 days.

Enjoyment of play with other children should occur around the age of 2 years.

Hand flapping is entirely normal in infants, and it seems to me that, as a pediatrician, Dr. Jay should be aware of this. Plus, in order to hand-flap, the baby needs some motor skills.

The DTP vaccine is no longer used in the US. The DTaP vaccine is what is used. It's administered at 2, 4 and 6 months of age. Same with the Hib vaccine.

So what do we have here? Did Dr. Jay make it up completely? Perhaps this is a non-event that was blown out of proportion.

Now, I wonder, was this child vaccinated by Dr. Jay? If not, why would parents take a child with the apparent symptoms noted to a doctor who is not qualified to diagnose developmental disorders, in just 3 days? Then again, is it plausible that Dr. Jay would administer 2 vaccines in one visit?

I suppose that a pediatrician who scares parents about autism and discourages vaccination could cause them to notice things that are completely normal all of the sudden.

Maxine Aston and CADD - A Different Level of Crankery

2009-04-25T07:11:00.000-07:00

I'm sure readers are aware fellow blogger Alyric passed away last week. Subsequent to her passing, there has been some discussion about something called Cassandra Affective Deprivation Disorder (CADD), which Alyric had felt strongly about. (See the ASAN Petition, this post by Gonzo, and this older post by ABFH with over 60 comments.)

I have to admit this CADD thing had completely passed me by. It was only after I read the documentation related to the recent activity that I realized it pertained to yours truly in a personal sense. But I wanted to see if the claims around CADD had any merit from a more objective point of view, personal implications aside.

The Syndrome

Maxine Aston claims to have discovered a new syndrome called CADD, observed in the significant others of autistic adults. Unfortunately, the only definitions of the syndrome are found in websites and books that simply list the characteristics of the alleged syndrome. I could find no mention of it in the scientific literature.

I haven't found a "how to" on making up new syndromes. But it's possible to research how it has been done historically.

In order to define a syndrome, it's not sufficient to just come up with a list of symptoms. You have to show that it exists. Testimonials are not sufficient. Consider Kanner (1943), which defined autism for the first time. Kanner wrote the case histories of 11 autistic children in detail, based on meticulous research observations.

This was not sufficient, though. For "autism" to be considered valid, subsequent research was required. For example, if autism had been found to be the same as other constructs like mental retardation or schizophrenia, say, when you match groups by IQ, then it would've been deemed an invalid construct.

The syndrome should also have some usefulness (e.g. Does it help predict something useful? Does it help define unique needs the individual might have?)

In fact, today there's some controversy about the validity of Asperger's Syndrome, since the differences between HFA and Asperger adolescents and adults (when matched by IQ) are nearly non-existent. Asperger's could very well be an unnecessary construct. But I digress.

For CADD to be considered valid, there not only needs to be a write-up of case histories in the scientific literature, you also need to show that it is different to everything that has been reported previously. Unhappy significant others and failed relationships abound. Are the relationships with autistic adults unique in this sense, say, when matched for socio-economic status and disability in one partner? And if so (which I don't doubt is true) are they uniquely bad, or are they simply different? Can any problems be explained by lack of acceptance?

Causes

The existence of the syndrome has not been established, so it seems a little spurious to talk about causes. Nevertheless, let's look into what the alleged causes are.

As far as I can tell, "sufferers" of CADD claim that it is caused by lack of empathy and lack of emotional reciprocity in the part of the autistic significant other.

Regarding empathy, there's some recent research that shows adults with Asperger's Syndrome score lower in measures of cognitive empathy, but not in affective empathy. Persons with Asperger's actually experience higher levels of distress when observing others in distress.

These findings bring into question the means by which empathy is measured in research.

I'd also recommend reading Dr. Gernsbacher's Toward a Behavior of Reciprocity.

Symptoms

The symptoms of CADD are claimed to be essentially the same as the symptoms of Seasonal Affective Disorder (SAD), including sleeping problems, depression, etc.

Again, in order to make these sorts of claims, some evidence, perhaps in the form of a case-control study, is needed. Testimonials are not sufficient. It would also be necessary to show that the symptoms can't be explained by socio-economic status, assortative mating, or disability in the significant other.

There are more far-fetched claims attributed to Aston, like CADD resulting in cancer. I'm sure this is based on one or a few anecdotes. Since cancer is fairly common in adults (the lifetime risk of developing some form of cancer is over 40%) such anecdotes are nearly useless.

Besides, there's some evidence that psychological stress does not contribute to cancer risk (e.g. Johansen & Olsen, 1997). The matter appears to be unresolved.

Conclusion

What we have here is a syndrome that has not been shown to exist, with alleged causes that might be erroneously attributed to autism, and with symptoms that haven't been shown to be associated with the alleged causes.

Sound familiar? This is no different to crankery like "autistic enterocolitis" or "mercury-induced autism." Except the promotion of CADD has the potential to result in a lot more direct damage to the personal lives of autistic adults.

Adult Outcomes from Toronto and Utah. Then and Now.

2009-04-20T18:09:00.000-07:00

After some recent discussion around the performance of autistics in college, I decided to read Szatmari et al. (1989). I was aware this adult outcome study looked at the academic achievements of autistics without intellectual impairment (IQ >= 70).

I found that this 20 year old paper has a lot of other information of interest. Additionally, the population it studied is similar to that of the recent outcome study out of Utah that Sullivan had written about over at LB/RB.

Even though the Utah paper is apparently not yet available, there is some information from it which we can use to compare and contrast. I thought it would be useful to go through Szatmari et al. and see how it compares to the Utah study when possible, and to other outcome studies I'm familiar with.

Group Sizes

One limitation of Szatmari et al. is that it was small. They only managed to find 16 autistics who agreed to participate. The Utah study included 41 adults.

General Outcome Assessments

Szatmari et al. doesn't really provide ratings of "good" or "very good" but a fair assumption is that half of the adults would've been given these ratings, which is basically the same thing the Utah study finds.

It also reports that 4 of the 16 (25%) might be considered "recovered." This is how the paper puts it:

If a naive individual were to meet the first four probands from Table II without knowledge of their early history, one might conclude they were essentially normal.

The Utah study reports that 6 of the 41 (15%) no longer had autism diagnoses. As Sullivan notes, we don't know if they have Asperger or PDD-NOS diagnoses.

Employment & Independence

Szatmari et al. finds that 8 (50%) were in full-time employment, 3 involving regular contact with people. Five were living independently, 10 with parents, and 1 in a group home.

In the Utah study, half had full-time or part-time employment. About half lived in group homes or with parents.

Dating & Marriage

Szatmari et al. reports that 4 individuals had dated regularly and had been in long-term relationships. One was married.

The media report of the Utah study states: "A few are married and have children. They have friends or acquaintances."

Predictors of Outcome

The usual predictors of outcome, like IQ, are noted in Szatmari et al. What I wanted to go over are some of the predictors and non-predictors, measured or qualitative, which are not well known but have been mentioned elsewhere.

On early severity as a predictor, Szatmari et al. says:

Nevertheless, the results do suggest that, for this group of HFA probands, early history explained little of the variance in outcome. Indeed, the good and poor outcome groups differed little with respect to early impairments in social responsiveness, deviant language, and bizarre behaviors.

From the Utah study:

While all participants had baseline IQs in the nonimpaired range, there was limited evidence to support the use of other early childhood variables to predict adult outcome.

About the time frame when most gains were observed, Szatmari et al. tells us that:

Parents noted that the good-outcome cases had improved considerably by late adolescence. By this age, parents felt their children were still somewhat shy and awkward but not odd or eccentric.

This is something I had previously read about in Kanner (1972):

They have not completely shed the fundamental personality structure of early infantile autism but, with increasing self-assessment in their middle to late teens, they expended considerable effort to fit themselves — dutifully, as it were — to what they came to perceive as commonly expected obligations.

And:

It was not until the early to middle teens when a remarkable change took place. Unlike most other autistic children, they became uneasily aware of their peculiarities and began to make a conscious effort to do something about them.

Szatmari et al. has something to say about the involvement of the parents:

The mothers of these probands were, however, able to advocate forcefully for their child in terms of educational and recreational resources.

A similar observation can be found in Ruble & Dalrymple (1996):

What seemed to be an important predictor of success was that whenever individuals and their families were confronted with challenges, they sought and successfully accessed various supports. For example, when families were told to "place" their young children, their parents sought and created alternatives. Some of the families were the first to push for integration in school and used their natural community and family ties to include and support their child.

College Outcome

Unfortunately, we don't have data on college attendance from the Utah study. I will go over what Szatmari et al. finds, and also some data from Kanner (1971) and Kanner (1972).

Eight (50%) of the group from Szatmari et al. had attended college or university. Seven had obtained degrees. The remaining one was beginning his second year as an undergraduate.

I find this quite interesting, statistically. As of 1990, about 42.7% of persons 18-19 in the US attended college (source). It was 38.5% for 20-21 year olds. Of course, when it comes to Szatmari et al. we're talking about Canada, not the US. Additionally, the autistic individuals came from affluent families, according to the paper. Diagnosed autistics tend to be urbanites.

Now, as of 2004, about 33% of college students in the US graduate in 4 years or less, 50% in 5 years or less, and 55% in 6 years or less. About 45% take 7 years or more to graduate, or never do (source.) I think it's remarkable that none of the autistics from Szatmari et al. who attended college had failed school at the time of the study. Only one (age 19) had not obtained a degree yet, but was still in school.

Note that the autistics from Szatmari et al. were not a bunch of geniuses by any means. The average IQ of those autistics who attended college was apparently 102 (range 86 - 110.) This is similar, probably even less than the IQ of the average college student.

They generally did not obtain graduate degrees. One had an MBA. A couple had Bachelor of Science degrees. This is probably not surprising statistically. Plus, again, the study is 20 years old.

College was a relatively adequate environment for autistics, according to Szatmari et al.

Living in residence at university seemed to make a major difference to the probands themselves. It was as if the forced confinement of living with others had a beneficial effect on their socialization. Certainly, this was a time when the probands felt most accepted by their peers. To many, these were their happiest years.

I also scanned Kanner (1971) and Kanner (1972) for mentions of autistics who had attended college. I found 7 such persons, not counting "the gifted student of mathematics killed accidentally and the young man whom we have so far lost track after 1962 when he was in college." Of the 7, 5 had obtained some sort of college or university diploma. One of them had a Master's degree in Economics. One was said to be struggling in general college, but there's no follow-up as to outcome. One was a student, doing well at university, and gifted in Math.

One issue with the Kanner papers is that they were qualitative in their entirety, so it's possible some of the autistics he saw went to college and failed, but he didn't write about that.

Comment

When you look at the outcomes of autistics who have a distribution of IQs similar to what you find in the general population, certain difficulties and impairments will be evident: autistics struggle a lot when it comes to marriage, dating, friendships, independence, etc.

When it comes to employment, we know that autistics are under-employed. It's not clear how well the autistics who are employed do at their jobs. Some qualitative data from Kanner (1972) suggests that autistics who grew up in the 1960s and who got jobs did fairly well. It's also not clear why half the autistics from Szatmari et al. were not employed.

As far as college enrollment, there doesn't appear to be much of a difference between autistics and non-autistics of the same intelligence. In fact, autistics seem to do (or used to do) rather well in college, judging by the rates of graduation reported.

Very Quick Note About Self-Concept and Achievement

2009-04-07T06:53:00.000-07:00

I was looking for something else entirely and I happened to come across an old paper titled "Self-Concept of Ability and School Achievement" (Brookover & Thomas, 1964.) I thought it was pertinent to the discussion around the BRAINHE study on neurodiversity and particularly Jake Crosby's contention that self-confidence does not have an effect on "real" success. His claim was counter-intuitive all in itself. This might also be of interest to Billy Cresp, who appears to believe intelligence is the only variable that matters.

The abstract follows.

Three hypotheses concerning self-concept were tested using a sample of 1,050 seventh grade students and a selected subsample of 110 over- and under-achieving students. A significant positive relationship was found between self-concept of ability and grade point average; this relationship persisted even when measured intelligence was controlled. Specific self-concepts of ability related to specific areas of academic achievement were found; in some areas these were better predictors of achievement in the subject than general self-concept of ability. Self-concept was significantly and positively related to the perceived evaluation of significant others. A direction for further research is indicated.

(Emphasis mine)

One Handley Turd I Left Out

2009-04-06T07:24:00.000-07:00

In my previous post I looked at a few statements JB Handley made during his recent appearance on Larry King Live. Whether the statements were dishonest or simply wrong, I can't tell, but they were notable in their wrongness. They have even been referred to as fractally wrong.

I left an important one out, which I was pretty sure was wrong, but I needed to research it a bit more.

So I would tell you either go back to the 1989 schedule before this whole mess happened or go to Finland's schedule, Sweden's schedule, Norway's schedule and use theirs. Because their autism rates are one tenth of ours.

He must mean their rates of identified autism are one tenth of what they are in the US. I don't like it when people don't make that clarification.

But let's see what a quick search of the literature has to say.

Sweden

One study in the town of Karlstad, Sweden (Kadesjö et al. 1999) had found the prevalence among 7 year olds to be 1.21%. I'll let Lorna Wing summarize why this study is of interest:

Kadesjö et al (1999) report a study in Karlstad, a Swedish town. Although this was small scale it was very intensive (over 50% of the 7 year old children seen and assessed personally by the first author). The study found a prevalence for all autistic spectrum disorders for all levels of IQ, of 1.21%!!! Children were followed up four years later and had the diagnoses confirmed.

That's not all, though. You have, for example, Arvidsson et al. (1997), a study that set out to identify "all individuals with severe degrees of autistic behaviour." They found a prevalence of 31 in 10,000 among 3 to 6 year olds. This is more like half of the consensus prevalence in the US.

Then there is Gillberg et al. (2006) which finds a prevalence of 20.9 in 10,000 for autistic disorder, and 32.9 in 10,000 for "other ASDs." That's 53.8 in 10,000 total.

There are several other studies from Sweden we could look at, but I think the wrongness of Handley's claim has been clearly established just with the ones mentioned.

Finland

Mattila et al. (2007) found a prevalence of 25 in 10,000 for Asperger's Syndrome alone. This is actually higher than what the prevalence of Asperger's in children is normally found to be.

An older study, Kielinen et al. (2000), finds a prevalence of 20.7 in 10,000 among 5 to 7 year olds. This is lower than the US consensus prevalence, but it's only 1/3rd of it, not 1/10th. Additionally, note that 50% of the children had IQs below 70. This is different to what you see in California DDS, for example.

Norway

The most recent epidemiology from Norway is a bit old, and here we do see that the prevalence is similar to what it traditionally was for Kanner autism. For example, Sponheim & Skjeldal (1998) find a prevalence of 4 to 5 in 10,000 for 3 to 14 year olds, using ICD-10 criteria.

However, there's a recent screening of 7 to 9 year old children using the ASSQ. That's Posserud et al. (2006). It finds that 2.1% of children were high scorers in the ASSQ when both teacher and parent questionnaires were considered. (It was 2.7% if they considered teacher forms only, as some parents declined to participate.) That seems high.

Unfortunately, Posserud et al. don't tell us how many were confirmed to be diagnosable with ASD after the screening. There's an update of that study, Posserud et al. (2009). I wish I had a copy. All I know is that the ASSQ is found to have a sensitivity of 0.91 and specificity of 0.86, which appears good.

In any case, JB Handley's assumption is kind of simplistic even if we only consider the country of Norway, as it ignores all the issues involved in identifying autism.

JB Handley - Poorly Informed or Outright Liar?

2009-04-04T07:40:00.000-07:00

Last night I was changing the channel and I stumbled upon Larry King Live (transcript here.) It must have been only a couple of minutes before they switched to Anderson Cooper. During that time, I got to watch JB Handley make a monumentally false statement. I'll go over several statements he made during the show, but first I want to address the one that caught my attention.

Did you see the January study from UC Davis using California's numbers that said unequivocally there's been a clear rise, it's not do [sic] to diagnostic substitution.

Handley is referring to Hertz-Picciotto & Delwiche (2009). This is what the conclusions of the paper actually said:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

That's not an unequivocal determination of a clear rise, by any stretch of the imagination. Besides, that paper was surprisingly poor. None of the figures used by the paper approach anything that might be called certain or accurate. One of the artifacts the paper fails to take into account is probably the most pertinent artifact of all: awareness. A summary of all the very serious problems the paper had can be found at the end of this post.

Next statement:

We're looking for something that's caused this epidemic. It went from one in 10,000 in the 1970s to less than one in 100 today in many states.

The first epidemiological study of autism was Lotter (1966). It finds a prevalence of 4.5 in 10,000. That was in the UK. Wing et al. (1976) finds the same prevalence in the US. Mike Stanton has a good summary of historical prevalence studies. I don't think this is the first time I've corrected Handley and others about this.

I happen to have read Lotter (1966). What they called 'autism' back then is very different to, say, what the DSM-IV calls 'autism' today. It's apples and oranges. Here's a excerpt from Lotter (1966) to give you an idea:

The two categories of the Creak criteria concerning a "'pathological preoccupation with particular objects" and "an insistence on the preservation of sameness" were therefore combined.

These are similar to criteria C2 and C4 of the DSM-IV, but in the DSM-IV they are basically optional (only 1 item from C is required.)

The paper explains they located 666 out of 75,930 (88 in 10,000) children who had "certain kinds of behaviour" that couldn't be simply characterized as "backwardness." They initially excluded 87% from this group, based on the opinions of two judges familiar with the syndrome of autism.

They ended up with 32 autistic children, 22 (68.8%) of whom had IQs under 55, another 5 (15.6%) with IQs between 55 and 79, and the remaining 5 (15.6%) with an IQ of 80 or above. Again, this is quite different to what we call 'autism' today.

Moving on:

I want to talk about this issue of autism prevalence. It's going to be shocking for parents to learn that the CDC and the AAP don't actually acknowledge that there's been a real rise in autism cases. Larry, the Department of Education in 1992, 16,000 kids were getting autism services. Today 225,000. That means in 1992, they were missing 93 percent of kids with autism. Where are all the adults with autism? They don't exist.

Adults with autism don't exist? That's not only insulting and potentially damaging to the quality of life of autistic adults; it's completely wrong. It becomes embarrassingly wrong every time someone goes and surveys adults to see if autism can be found among them.

Again, I doubt this is the first time this has been pointed out to JB Handley.

Heck, Handley's Age of Autism has a token autistic adult who contributes to that blog from time to time.

His Special Education figures are essentially correct, except the year is 1993, not 1992. What he fails to mention is that 489,000 students were receiving services under the mental retardation category in 1993, and only 425,000 as of 2007.

Let's consider Specific Learning Disability and MR together, and let's also consider population growth. The prevalence of both categories combined was 645 in 10,000 in 1993, and 584 in 10,000 as of 2007 for 6 to 17 year olds. That's a drop of 61 in 10,000 – more than enough to cover the increase in the administrative prevalence of autism.

Is it possible that JB Handley has never heard of diagnostic substitution in IDEA? Doubtful.

Those are all the statements I will address in this post. Readers are welcome to point out other errors, if any.

My impression is that JB Handley is either completely misinformed about some basic facts having to do with autism epidemiology, or he decided to go on Larry King to simply lie with a straight face.

To conclude, here's some advice for Larry King: In the future, if you want to discuss the "autism epidemic," you would do well to invite recognized experts on the matter, such as Roy Richard Grinker or Eric Fombonne.

Autism Awareness and its Relationship to the "Epidemic"

2009-04-03T09:27:00.000-07:00

Yesterday was World Autism Awareness Day. (That's right, its acronym is WAAD, and it's the day after April Fool's day.) Given the occasion, I thought I would discuss "awareness." More specifically, I wanted to discuss how we can tell that awareness has had an impact in what is usually referred to as the "autism epidemic."

That awareness could account for much of the increase in autism diagnoses since the early 1990s is taken for granted. You will find awareness mentioned in many autism papers. In the recent MIND Institute paper (Hertz-Picciotto et al. 2008) awareness was acknowledged but not taken into account in the calculations. While H-P et al. apparently did not believe awareness to be an important factor, many other researchers seem to think it is. I personally believe it's supremely important. Changes in criteria can't in themselves cause the number of diagnoses to rise. Autistic persons need to be found and diagnosed (with autism) before they are counted. If diagnostic substitution is increasingly occurring, there's probably a reason why it's occurring: awareness.

Nevertheless, as far as I know, no one has ever demonstrated that awareness explains the rise, statistically. Thus, we fall into the same trap that proponents of most environmental hypotheses fall into. We assume that because awareness has increased in the information age (as it obviously must have) and rates of autism have also increased, one causes the other. Could it simply be a coincidence?

How do you measure awareness? Here's one way. I will use Google News Archive Search to search for the phrase "autism california" every year from 1992 to 2006. I propose that the number of results is an adequate proxy of autism awareness in California, though like all proxies, it's just an approximation.

I'd like to have data on diagnoses of autism to be able to make a comparison. I don't have that, however. Here's the next best thing. I will use data on number of California DDS clients with a classification of autism as reported on March of every year from 1993 to 2007. More specifically, I selected the number of autistic children born only 3 years prior to the report.

Let me explain the rationale. If we were to choose 5 year olds, that wouldn't work very well, as they could've been diagnosed when they were 2, 3, 4 or 5. It would be difficult to correlate caseload in the report year with awareness in several prior years. If we instead choose children born only 3 years before the report year, they almost necessarily have to have been diagnosed the year prior to the report year. This is especially true if we use the March report. If we were to use the December report, this again might not work very well.

Without further ado, the following is the graph I came up with.

The blue line represents awareness. The green line represents autism caseload of 3 year olds, approximately. There are 2 Y axis scales, left and right respectively. I think the 1 year lag between one and the other is pretty clear. If you prefer to visualize the data in a scatter chart, here it is:

It's true that correlations that are purely coincidental (e.g. pirates vs. global warming) can result in convincing scatter charts like the one above, and I haven't done further statistical analysis to rule out coincidence, but I think there are a couple of clear features of the series that make me think we're looking at causation. First, I already noted there's a 1-year lag in the expected direction. Second, awareness seems to start to shoot up in 1999. Autism caseload, in this cohort of very young children, starts to increase noticeably in 2000. Then there's also a clear spike in awareness in 2005, which corresponds to a spike in caseload in 2006.

Considering there's also plausibility, I think we can safely say awareness did have an impact in the rise of autism diagnoses. I only looked at very early diagnoses, but this is because I don't think I have other data that could be adequately used instead. I would imagine awareness has an impact on diagnoses at any age.

This is not a Parody of Dan Olmsted. This is Actually Him.

2009-03-11T16:52:00.000-07:00

From Age of Autism:

Olmsted on Autism: Man Kills Ten, Self. Why?
Aluminum poisoning
By Dan Olmsted

It's way too early to conclude anything about the reason behind yesterday's rampage in Alabama, in which a man killed his mother, 9 others and himself. But it is not too early to point out a couple of facts.

First, the place he chose to end his life was the parking lot of a former employer, Reliable Products in Geneva, Ala.

Second, according to Reliable's Web site, "Reliable Products is the leader in louver manufacturing for the thru-the wall a/c and heating industry." All these products -- grilles, louvers, vents -- appear to be made of aluminum. Reliable is, in essence, an aluminum products manufacturing facility.

Aluminum, as we know, is toxic ...

What's the standard response in these situations? Oh yeah...

For background, see this post.

AoA's Token Aspie Reacts to BRAINHE Study With Error-Filled Article

2009-03-04T04:20:00.000-08:00

Anti-vaxers have a lot to be upset about lately. First, it turns out that Wakefield probably falsified his data. Second, they took a beating scientifically and legally at the Omnibus Autism Proceedings. Third, their attempt to counter-attack by recycling a weak vaccine injury case from 2007 and acting as if it were new and "hidden" did not bear fruit.

To top it off, they've recently come to realize that neurodiversity is actually studied by scientists and sociologists. To be clear, neurodiversity is not the opposite of anti-vaccination. One has little or nothing to do with the other. Anti-vaccination has to do with causation, science, autism quackery and public health. Neurodiversity is a social concept, essentially independent of causation, which is not exclusive to autism by any means. Anti-vaxers, nonetheless, see neurodiversity as a threat for various reasons that are beyond the scope of the post.

In my last post I wrote about the BRAINHE Project report on neurodiversity. There's one paragraph in the report that I think is worth quoting again.

13 of the participants viewed their neurodiversity as an entirely negative matter. These participants frequently used negative or medical terminology when talking about their labels which indicated that they felt in some way broken or damaged. Of the 13 students who had this view, 8 indicated low academic self-esteem and expressed confusion and uncertainty about their future plans. Participants who viewed their neurodiversity as a difference which included strengths were more likely to have higher academic self-esteem, to have experienced unpleasant epithets from teachers and to have a clear ambitious view of their future.

Jon Mitchell reacted to this report, and I already discussed that. It's not surprising that AoA'ers would also react. To do that, they brought out their token Aspie, one Jake Crosby, who writes for AoA from time to time. I hadn't heard of Jake Crosby previously, but I guess we can add him to the short list of autistics who actively oppose neurodiversity, and who always happen to be high functioning.

Jake Crosby's article, titled "The Age of Neurodiversity," is filled with errors. I'm saying it's filled with errors because I'm giving Mr. Crosby the benefit of the doubt. I could just as easily have said it's filled with lies and misrepresentations. Any other major blog (or "internet newspaper") would be embarrassed to publish an article with these many inaccuracies. Let's go over some of them.

[Paul Offit] strangely cites two neurodiversity moms, Kathleen Seidel and Camille Clark for medical evidence, neither of whom have any medical background.

I've read False Prophets and my instinct was that Mr. Crosby was mistaken. I read it again just now, and at no point are Kathleen or Camille cited as experts who provide medical evidence. They are in the book simply to show that not all parents of autistic children are anti-vaxers.

He would simultaneously oppose any alternative therapy or pathological theory for autism, however effective or true, even if it is on the basis of what a few ND moms say.

I haven't seen any evidence that Dr. Offit would oppose any "pathological" theory of autism. Reading False Prophets gave me the opposite impression. As most doctors, he most likely sees autism from a purely medical perspective.

As to opposing "alternative" therapies that are "effective and true," that's an oxymoron. If a therapy is shown to be "effective and true," it's no longer an "alternative" therapy. It's simply a therapy. There's no evidence that Paul Offit would oppose therapies that are "effective and true." In fact, he seems to favor ABA because he's been led to believe it's effective, even though he is, in my view, mistaken in that regard (as high quality evidence on the effectiveness of ABA is lacking.)

In his final chapter, "A Place for Autism," Offit continuously touts the views of the five autism parents he dedicates his book to, the majority of whom believe in neurodiversity while the remaining have pharmaceutical industry ties.

Other than Kathleen and Camille, Dr. Offit's book features Peter Hotez, Professor of Microbiology and Tropical Medicine at George Washington University School of Medicine; and Dr. Roy Richard Grinker, Professor of Anthropology at George Washington University. I don't know about Dr. Hotez, and doctors are obviously bound to have connections to the pharmaceutical industry (just as, say, the Geiers do) but I seriously doubt Dr. Grinker has such ties.

This is strange, as apparent confidence or career ambition does not dictate real success or happiness.

This is a perplexing statement. It does not make sense, first of all. If you have zero confidence and zero ambition, it's improbable you will achieve much, regardless of how smart you are.

More importantly, there's a significant body of science on the effects of self-confidence on success, failure and performance. Mr. Crosby might want to read up on that before making statements that are nonsensical.

After a closer look of the study, “Student experiences of neurodiversity in higher education: insights from the BRAINHE project,” I quickly noticed that not all the people in the study were autistic. For one, it was published not in a journal about autism, but dyslexia. In fact "Dyslexia" is the name of the journal. It was not even focused on autism.

This discovery is kind of funny. It shows that Mr. Crosby has no idea what neurodiversity is. As the word suggests, neurodiversity is about, you know, neurological diversity. It's not a concept that is married to autism. The fact that neurodiversity as a term was coined by autistics and is most often discussed in the context of autism is of interest, but ultimately immaterial. It's good to see that researchers are applying the term broadly, as they should.

This is how the researchers define neurodiversity:

Neurodiversity is an umbrella term for many types of learning difference.

The study is about neurodiversity, not about autism. I'm not sure what's so hard to get about this.

Furthermore, this study does not contribute to how prevalent the idea of "Neurodiversity" is within the autistic community because this study examines six autistic people.

So? However prevalent the idea of neurodiversity is among autistics now, what the results of the study tell us is that it's in everyone's best interest for it to be more prevalent among anyone with a learning difference. From the study, it appears that the split on views is about 50/50 among those with learning differences.

Presenting it as if it reported that autistic students and graduates adhere to neurodiversity is a misrepresentation within the article that cited it.

The article that cited it was actually quite critical of neurodiversity. At no point did it make it sound like most autistic students adhere to neurodiversity. That's simply a fabrication. The following is what the article said.

According to recent research, people with autism who accept the neurodiversity platform have more self-esteem, and have more academic and career ambition that those who see autism as a medical condition with its array of disadvantages. In one study, students with autism who held the latter view more often applied for special assistance and monetary allowance through disabled students programs. Not surprisingly, most neurodiversity advocates with autism are high functioning, with little to no significant intellectual impairment.

I don't know if Mr. Crosby was pressured to produce his critique, and had a hard time coming up with proper arguments to refute the research in question. Either way, his critique is a complete disaster, and frankly, he should be embarrassed.

Nevertheless, There Are Differences Between Autistics Who Approve of and Disapprove of Neurodiversity

2009-03-03T09:40:00.003-08:00

In a departure from the more scientific topics I usually write about, my latest post argued that autistics who actively oppose neurodiversity are generally high functioning. Obviously, my intention was to point out the non-rationality of using a similar observation to try to invalidate the views of autistics who actively favor neurodiversity.

That post had over 200 comments. I wasn't aware before then that Blogger starts to page comments at 200. The number of comments is surely the result of a fight that ensued with one troll in particular, but it was impressive nonetheless, considering this is not an active blog. (I've seen posts with more comments outside of Blogger, e.g. this one about Wakefield over at LB/RB, with 395 comments; Kev had to close the thread.)

Recently I went over to Jon Mitchell's blog to see what he's up to. In his post titled "Does neurodiversity help autistics with self-esteem?" we see that he's using exactly the "high functioning" argument I had discussed.

I pointed out to Jon Mitchell that he hasn't demonstrated the existence of the group differences between autistics who approve of and disapprove of neurodiversity which he believes exist. The group sizes make this difficult if not impossible.

What he did do is bring attention to a published report titled "Neurodiversity in higher education: Insights from qualitative research by the BRAINHE project." There are many findings of interest in this report, to be sure, but there's one paragraph in particular that I wanted my readers to be aware of. I would like parents of autistic children, specially, to read this paragraph and understand its implications.

13 of the participants viewed their neurodiversity as an entirely negative matter. These participants frequently used negative or medical terminology when talking about their labels which indicated that they felt in some way broken or damaged. Of the 13 students who had this view, 8 indicated low academic self-esteem and expressed confusion and uncertainty about their future plans. Participants who viewed their neurodiversity as a difference which included strengths were more likely to have higher academic self-esteem, to have experienced unpleasant epithets from teachers and to have a clear ambitious view of their future.

Jon Mitchell, as you might expect, argues that it's not the participants' worldview which causes them to have self-esteem, but something outside of that; more specifically he argues that those with low self-esteem are lower functioning than those with high self-esteem, and that functioning level is also what causes them to either accept or reject the ideals of neurodiversity.

To be sure, the report is not terribly scientific, and there's no discussion of control for confounding. Yes, the report is lacking in that regard. We can't completely reject Jon Mitchell's speculation about a possible confound.

Let me ask the following, however. Which is more plausible? Is worldview more likely to affect self-esteem, or is functioning level more likely to affect self-esteem? Do bright people always have high self-esteem, whereas not so bright people always have low self-esteem?

There is a lot of research on cultural influence in self-esteem, which I'm not really familiar with, but you can search for it. Leaving that aside, does it seem plausible that someone with the views of Jon Mitchell could ever have high self-esteem regardless of their personal situation, and still be autistic?

So yes, I think there are probably group differences between those autistics who favor and those who oppose neurodiversity. I haven't seen convincing evidence that functioning level is one of those differences. Self-esteem most likely is a difference. To some extent it's possible that self-esteem affects functioning level and achievement too.

All Autistics Who Oppose Neurodiversity are High Functioning

2009-02-24T04:42:00.000-08:00

A common observation about the neurodiversity movement is that its vocal proponents are all "high functioning."

This is technically true. Consider the definition of "high functioning" used in research. Any individual who does not have mental retardation, i.e. anyone with an IQ of 70 or higher, is considered high functioning. Based on this definition, I believe all of the prominent proponents of neurodiversity or autistic rights are in fact high functioning.

Whatever other challenges autistics who are part of the neurodiversity movement might have now or might have had in the past, critics can always fall back to complex written opinion and proclaim "this person is obviously high functioning, intellectually."

This observation is usually made as if it were a curious and surprising discovery. "Of course they don't want a cure! Look at them, they are all high functioning!"

What is never mentioned is that all autistics who are vocal opponents of neurodiversity, and all autistics who write in length about the need for a cure, are also high functioning.

Is that also a curious discovery? Can we infer from this that only high functioning autistics would want a cure? Can we say that these high functioning individuals don't have a right to speak for all autistics?

It's true, though. All the vocal pro-cure autistics I know of are clearly high functioning. Let's go through a short list.

Jon Mitchell.- He's clearly high functioning, as he himself admits.

Sue Rubin.- She has written about her being pro-cure. While she calls herself "low functioning," she's mistaken about that. Her IQ is reportedly 133. Intellectually, she functions at a much higher level than most NTs.

Raun Kaufman.- He's so high functioning that he even claims to have turned into a non-autistic. (I realize he works for ~~his parents~~ the organization his parents founded [corrected 2/27/2009] and is apparently single in his late 30s or early 40s, but he obviously wants to market himself as non-autistic.)

Thomas McKean.- I know of him from his article titled A Danger in Speaking. He's clearly high functioning.

Then I've also heard of Asperger autistics who speak from time to time at rallies organized by the anti-vax autism community. Those autistics are clearly high functioning as well.

So there you have it. Prominent anti-cure autistics are high functioning. But so are prominent pro-cure autistics. Is that surprising? Not in the least. Yet, it's used as an argument against anti-cure autistics exclusively.

Anti-cure autistics, given they are high functioning, are told they should not speak for all autistics (even though there's no evidence that any of them claim to speak for all autistics.) Parents of autistic children, on the other hand, can apparently speak for all autistics (see Autism Speaks), even though the parents themselves are high functioning and non-autistic. That is, unless the parents are also autistic, in which case they again don't have a right to speak for all autistics.

Are Autistics More or Less Likely To Commit Murder?

2009-02-14T20:31:00.000-08:00

I'm sure many readers must have heard about the case of Sky Walker, an autistic teenager who has allegedly murdered his mother.

As you might expect, some people are using this case to support their views about autism. Kim Stagliano, for example, apparently argues that treatment is both necessary and effective in preventing this sort of circumstance. Plausible as her argument may sound to many, she has not presented any data to support it that I know of.

Harold Doherty has written about the case, trying to connect it to awareness of self-injury. Interestingly, Harold Doherty had been recently arguing that Andrew Wakefield should not be considered guilty until he is convicted by a tribunal of some sort. Harold has not expressed the same reservations about the media treatment of the Sky Walker case.

I'm not going to talk about the philosophical implications of the case, or possible root causes, etc. Others would be much better at doing that. What I will do is see if we can confirm or reject the hypothesis that autistics commit murder more (or less) often than non-autistics.

As you can imagine, there's no published data on the rate of murders committed by autistics. So do we give up and say we just don't know?

Let us first determine if autistics are more or less likely to murder than to be murdered. (I realize it's not the same question, but I think it's an important preliminary question we should try to answer.)

Consider this. The number of non-autistics who commit murder is roughly the same as the number of non-autistics who are murdered. If you discount mass murders and conspiracy murders, this is roughly correct. Is the same true of autistics?

I will assume that both murders of autistics and murders committed by autistics are reported in the media with good and fairly equivalent frequency. I contend this is a reasonable assumption, though I admit I could be wrong.

I carried out a Google News archive search of "autism murder" between 2008 and 2009. I'll just go over the first 3 pages of the search results (as I don't intend to spend days on this.) These are the persons accused of murder mentioned in the stories:

Karen McCarron (non-autistic)
Flower Nicole Tompson (non-autistic)
Robert Napper (autistic)
Xuan (Linda) Peng (non-autistic)
John Odgren (autistic)
A schoolboy (non-autistic)
Allen Grabe (non-autistic)
Judith Leekin (non-autistic)
Andrew Reid Lackey (autistic)
Unnamed boy (autistic)

That's 6 non-autistics and 4 autistics who have been accused of murder according to the set of stories that was examined. It's close. I'd say we can't reject the null hypothesis here, but it's possible that autistics are slightly more likely to be murdered than to murder.

An obvious counter-point is that the carers of autistics might be more prone to murder than non-autistics in the general population, so the comparison does not tell us whether autistics are less violent than non-autistics, only that we are equally or less violent than non-autistic carers of autistics. However, if it is true that the stress related to caring for an autistic person tends to increase the murder rate by carers, wouldn't the same hold true about the stress experienced by the autistic persons who are cared for?

Let's try to estimate what the rate of murder by autistics should be in the US, if autistics were just as prone to committing murder as non-autistics. There were 16,929 murders in the US in 2007 [source]. Using a conservative estimate of murderers who should be autistic (50 in 10,000), it would seem that about 85 murders should have been committed by autistics in 2007, by chance alone, without assuming autistics are more prone to murder.

Clearly, 85 murders by autistics were not reported in the media in 2007, otherwise you'd see daily blog posts about it from people like Harold Doherty, John Best and Kim Stagliano. One probable reason why we don't see those reports is that autism is more than likely underrecognized in adults. Is it possible autistics are less prone to murder than non-autistics? I wouldn't rule it out, but we just don't have enough evidence to say this.

Conclusion

There is simply no evidence that autistics are more prone to committing murder than non-autistics. Such views are only supported by anecdotes and socially constructed notions of autistic characteristics. A cursory look at available reports in the media does not support the claim that autistics are more violent than non-autistics.

The Age of Diagnosis Analysis is Also Wrong

2009-01-13T11:07:00.000-08:00

I've written a theoretical critique of H-P et al. and also looked at the figures from the paper to see if in fact the artifacts the paper does take into account cannot possibly explain the rise observed (as emphasized in the media by the primary author and other persons associated with the MIND Institute.)

In my first critique I basically skipped the section on Age of Diagnosis. I did not consider it the most important section, and the result (1.2-fold rise for the proportion of diagnoses by age 5) seemed plausible. The more I look at the paper, however, the more I come away thinking it's an exceedingly naive paper that got past peer review who knows how.

So I decided it was probably a good idea to have a closer look at the section on Age of Diagnosis. As it turns out, that section is also wrong.

Wrong Assumptions

What the paper does is compare the proportion of diagnoses before age 5 in the 1990 vs. the 1996 birth year cohorts. It finds that the proportion increased by only 12% in the 1996 cohort. Then it extrapolates from this to 2002. (I'll look at the extrapolation method later.)

That seems fine, right? You basically find out to what extent diagnoses by age 5 have changed, relative to all diagnoses you might expect to have in the cohort.

Except that's not what the paper does, nor would it be able to do that. What the paper looks at is the proportion of diagnoses by age 5 relative to diagnoses by age 10.

If there are few if any diagnoses after the age of 10, then that would work, correct? Intuitively, it seems reasonable that there wouldn't be too many diagnoses after the age of 10. But intuition and reality don't always agree. I knew that was an incorrect assumption because I've been looking at California DDS data for a number of years. (For example, see my post titled The Epidemic of Autism... Among 18-21 Year Olds.)

I have birth year data that California DDS provides on request (a file named Job5028.zip.) Let's look at the number of autistic clients born in 1990 as reported at different times.

In June, 1995 (approx. age 5): 404 In June, 2000 (approx. age 10): 663 In March, 2007 (approx. age 17): 918

Clearly, there is a non-trivial number of diagnoses after the age of 10. Of all the diagnoses by age 17, about 28% occur after the age of 10. There will no doubt be diagnoses after the age of 17 too.

Suppose things have changed since 1990. Perhaps in the 2002 birth year cohort close to 100% of California autistics are diagnosed before age 10. We can't know this, but if this were the case, I estimate that the impact of age of diagnosis would be about 1.6-fold and not 1.2-fold. With this, the total rise explained would get pushed over a factor of 5.

Of course, diagnoses after age 10 are confounded by changes in criteria. Some issues the paper has sort of compensate for one another, and this obviously makes it difficult or impossible to interpret the paper.

Wrong Math

The statistical analysis of age of diagnosis in the paper consists of exactly the following.

A shift toward younger age at diagnosis was clear but not huge: 12% more children were diagnosed before age 5 years in the 1996 birth cohort (the most recent with 10 years of follow-up) in comparison with those in the 1990 cohort. Extrapolation into the later birth cohorts (eg, 2002) would suggest a 24% rise in the proportion of diagnoses by age 5.

Basically, they do a linear extrapolation: 12% for 1990-1996, then assume it's probably another 12% for 1996-2002, which gives a total of 24%.

Is a linear extrapolation reasonable here? What if there's an acceleration in the age of diagnosis after 1996?

It would be a good idea to look at the trend, wouldn't it? That's why I made the following graph of the proportion of clients at age 5 vs. those at age 10 for birth years 1990-1997.

You tell me, is a linear extrapolation reasonable there?

There are also considerable random fluctuations in the series, so the authors should have calculated a confidence interval on the slope of the linear regression, which is easy to do.

Comment

Let me recap. There appear to be major issues throughout the paper.

Age of Diagnosis - As noted, the assumption that there are few if any diagnoses after age 10 is mistaken, plus the statistical analysis is basically non-existent and naive.

Changes in Criteria - It gets its result from a single Finnish epidemiological study of a population of intellectually disabled children. Finland and California are not necessarily equivalent genetically and environmentally. The ascertainment methods are also not equivalent in the least.

Milder Cases - It assumes that only Asperger's and PDD-NOS would have been missed by a study such as the Finnish one. (There also seems to be a contradiction as to what California DDS says in regards to Asperger's and PDD-NOS, and what the authors believe, which probably needs clarification; the contradiction was noted by Kev.)

What's left?

Awareness - Not considered at all, but noted in the paper as an artifact that should be evaluated later.

Diagnostic substitution - Not addressed at all. The authors probably assume that diagnostic substitution is subsumed by the other artifacts, but it's non-obvious that this would be the case.

Migration - Dismissed in one paragraph as probably not having much of an impact.

Access - There's discussion on access, but no statistical analysis of its impact at all. It's unclear why it's included in the paper.

Statistical Analysis - Basically non-existent. No ranges of statistical confidence are provided. The authors seem to be under the impression that because they are looking at whole population numbers, there's no room for uncertainty in their figures.

Claims about results - The paper claims that artifacts account for a 4.26-fold rise, which does not come close to explaining a 6.85-fold rise. How so? Furthermore, if they had used a 3.6-fold figure for the impact of criteria (a figure from a meta-study), the entire rise would have been explained.

OK. I've read papers having to do with autism epidemiology that are quite poor. For example, I've read several papers by the Geiers. Even so, I'm debating whether H-P et al. is the worst such paper I've ever come across.

In my view, the credibility of the MIND Institute and that of the authors has dropped a notch with this paper. Perhaps a big issue has been the way the paper was described in the media. The language in the paper itself is somewhat skeptical in comparison.

I think they need to think about the implications of being associated with something so naive, mistaken, and so poorly communicated to the public. I wouldn't be surprised if some of the authors decide to retract the paper at some point in the future. That's also something the editors of the journal Epidemilogy should think about.

Some Facts of Interest About the Numbers From the MIND Institute Study

2009-01-10T09:15:00.000-08:00

I recently critiqued H-P et al., a paper by the MIND Institute that claims the rise in autism cases in California cannot be fully explained by a number of factors like age of diagnosis, changes in diagnostic criteria, etc. What bothered me most about the paper is an apples-to-oranges comparison between California DDS ascertainment and a Finnish epidemiological study.

You wouldn't know it from the conclusions, but the researchers also admit that they didn't consider a factor that ought to be important in a database like that of California DDS: awareness.

What I want to discuss in this post is something else. It's interesting that the researchers don't mention how much of the rise in "cumulative incidence by 5 years of age" (prevalence at age 5 really) is explained by the factors they did consider, taken together. You have to do the calculation yourself. Let's take a look at the numbers, shall we?

First, what's the extent of the rise? The conclusions of the paper say 7- to 8-fold. But the results from the abstract actually say the following.

Cumulative incidence to 5 years of age per 10,000 births rose consistently from 6.2 for 1990 births to 42.5 for 2001 births.

That's a 6.85-fold increase. Now, how much of this is explained by the factors the researchers considered?

Quantitative analysis of the changes in diagnostic criteria, the inclusion of milder cases, and an earlier age at diagnosis during this period suggests that these factors probably contribute 2.2-, 1.56-, and 1.24-fold increases in autism, respectively, and hence cannot fully explain the magnitude of the rise in autism.

If we multiply 2.2, 1.56 and 1.24, we get a 4.26-fold increase. That's not too bad. With all the problems the paper has, it actually explains 62% of the rise. It doesn't admit to that anywhere, but it does.

(If it's unintuitive why you have to multiply the factors, try the following mental exercise. Suppose the rise in "full syndrome autism" is 3-fold due to changes in criteria, and there currently are also 3 times as many autistics due to inclusion of Asperger's and PPD-NOS. Obviously, you have a 9-fold increase total.)

The interesting aspect of this has to do with the 2.2-fold factor due to changes in diagnostic criteria. I say it's interesting, because the researchers choose this one number, based on a single Finnish study, in favor of the results of a meta-study, Williams et al. (2006).

A meta-analysis of 37 studies of autism prevalence found a 3.6-fold higher risk from DSM-IV or ICD-10 criteria versus other criteria, but this figure would have been confounded by the year of study.

I'm not sure what they mean by the year-of-study confound; they don't explain it. They could very well be right. I don't know.

But just for kicks, let's see what would've happened if the researchers had chosen the 3.6-fold factor instead of the 2.2-fold factor. That is, we multiply 3.6, 1.56 and 1.24.

In this case, the study would explain a 6.96-fold rise. The actual rise was 6.85-fold. In other words, the study would have explained 102% of the rise. Does anyone else find that kind of suspect and hilarious at the same time?

The MIND Institute's Second Attempt: More of the Same Type of Reasoning

2009-01-08T10:16:00.000-08:00

The MIND Institute has published a new study titled The Rise in Autism and the Role of Age at Diagnosis (hereby referred to as H-P et al.) Among its conclusions: "Younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases." As you can imagine, the paper is being cited uncritically in the usual places.

I would like to discuss what it is the paper finds, how it finds it, and whether the findings are accurately characterized. Before I do that, however, I think some background is in order.

Back in 2002, a MIND Institute report to the California Legislature concluded basically the same thing: That a loosening of the criteria had not contributed to the rise in autism diagnoses in California. Back then the MIND Institute report was considered evidence of the "autism epidemic." But it contained a significant error in reasoning, first noted in Gernsbacher, Dawson & Goldsmith (2005).

Basically, the 2002 report found that an earlier cohort of children met DSM-IV criteria at about the same rate as a more recent cohort of children. As Gernsbacher et al. patiently explain, it's not surprising that the more recent DSM-IV criteria is met by nearly all the children, the younger ones and the older ones. What would be more relevant to find out is whether the older children meet some narrower criteria that the younger children do not meet. Gernsbacher et al. illustrate the fallacy using a height analogy and call the researchers' conclusions "imprudent."

There are two main areas of the new paper that I want to discuss: Changes in diagnostic criteria, and inclusion of milder cases (birth cohorts 1990-2006). The paper looks at other areas, but I'd like to focus on the two that are key.

Changes in diagnostic criteria

Finding: Changes in diagnostic criteria have contributed a 2.2-fold increase in the rise of autism incidence in California.

How is this determined? This being the most important area of the paper, my expectation was that I would find new data produced by H-P et al. showing that only a 2.2-fold increase may result from changes in diagnostic criteria. This is not the case at all. H-P et al. rely on prior work.

Specifically, they rely on Kielinen et al. (2000), a study out of Finland based on data "collected from hospital records and the records of the central institutions for the intellectually disabled in the Provinces of Oulu and Lapland in 1996–1997."

The 2.2-fold increase is the difference found by Kielinen et al. when comparing autistics diagnosed with Kanner's criteria vs. those diagnosed with ICD-10 or DSM-IV.

So what's wrong with this result? You need to ask yourself if the results from Kielinen et al. are applicable to changes in the California DDS autism population.

You see, even if we assume that all California autistics from the birth cohort 1990 were diagnosed with Kanner's criteria, why should we assume that all persons matching this criteria were identified and registered with California DDS? Isn't it more likely that only a small minority of such persons were recognized at the time? Furthermore, Kielinen et al. only look at the population with autism or other psychiatric conditions as recorded in known databases. California DDS has a much broader population pool to draw from, which would be more than relevant at the present time.

Also note that the DSM-IV prevalence found by Kielinen et al. is low compared to that of other DSM-IV studies: 20.7 in 10,000.

In essence, I do not believe there is any basis for comparison of Finnish ascertainment done in a 2000 study vs. California DDS ascertainment, either in 1990 or in 2006.

Inclusion of milder cases

Finding: Inclusion of milder cases contributes a 1.5-fold increase in the rise of autism incidence in California.

How is the result determined? H-P et al. again rely on work from a separate study: The Childhood Autism Risks from Genetics and Environment study. In this study, 64% of California cases were confirmed to meet criteria for autism (excluding Asperger's and PDD-NOS) when evaluated using two separate diagnostic instruments.

I was initially confused as to why inclusion of "milder" cases is necessary to take into account, if the paper already claims to have looked at changes in diagnostic criteria. The reason is probably that Kielinen et al. would not have studied PPD-NOS or Asperger's cases.

So what's wrong with the result? If you're trying to account for cases that Kielinen et al. would have missed, I'm not sure that PDD-NOS and Asperger's are enough. What about high functioning autism in general? That's not the same thing.

There's also the question of why only "milder" cases should be considered. Why not more severe cases? Should we assume that Kielinen et al. would've detected all of those? Then there are cases that are neither more severe nor milder but just not diagnosed as autism traditionally. For example, would Kielinen et al. have recorded cases of autism in Down Syndrome or Cerebral Palsy, where California DDS obviously does?

In the end, this particular result does not tell us much. What it says is that if you exclude all autistic children who should not be eligible for California DDS services, the impact on the number of cases is not too great. I could've told you that.

Did They Miss Anything?

One question that comes to mind is why the researchers did not discuss diagnostic substitution, particularly from mental retardation.

Would this be part of the "changes in diagnostic criteria" analysis? Yes and no. To the extent that children previously diagnosed with mental retardation are currently diagnosed with autism because DSM-IV criteria says so, then yes, the analysis by H-P et al. would suffice (assuming that analysis were valid, which I don't believe it was). If there are reasons for the shift that go beyond criteria, then no, it is not enough.

Diagnostic substitution in California is interesting for other reasons. I think there's sufficient data there to do a proper analysis. For example, you can look at cases of mental retardation without autism over time and see if they decline. I have reason to believe such an analysis will be available in the near future.

Comment

H-P et al. is a surprisingly poor paper. It does not produce any new data in order to support its two main results. It makes an apples-to-oranges comparison between a Finnish epidemiological study and California DDS ascertainment over time. It tells us the obvious about "milder" cases. In the end, I don't think this is an improvement over the 2002 MIND Institute report to the California Legislature. In fact, it could very well be worse.

The way H-P et al. have gone about trying to show there's a real rise in autism incidence over time is not a very good way to go about doing things, in my view. There are other ways. For example, I've suggested trying to replicate Lotter (1967) in detail. This would not be as easily challenged.

Error in Scientist Mom's Vaccine & Autism Data Analysis

2008-11-11T07:39:00.000-08:00

Back in September there was some noise about a post by someone I'll call "Scientist Mom" (apparently she doesn't use a pseudonym at all) titled The Correlation that Does Indicate Causation. I didn't want to even read the post back then because I had a feeling I would become involved in analyzing the data and spend way too much time that I was supposed to spend doing something else. The obvious critique of such an analysis, without knowing much about it, is that it was a pirates vs. global-warming type of correlation. Orac slammed Scientist Mom for it, and rightly so.

In my last post on the (lack of) association between rainfall and autism I had used birth-year data from California. I thought a natural extension of that work was to apply a detrended cross-correlation analysis to the caseload data and Scientist Mom's vaccine data.

Well, to my disappointment, the post doesn't provide any usable vaccine data. It's more of a qualitative analysis, where Scientist Mom just lists vaccines that were recommended during different time periods.

I noticed a significant error in the analysis, however. It has to do with Scientist Mom's key claim:

Most compelling of all, there was no increase in the percentage of autism cases in 2002-2004, when no vaccines were added to the childhood schedule.

I wonder if the error is obvious to some of my readers. If I mention "left censorship" as a hint, do you see the problem now? What if I mention that in my last post I decided to left-censor California birth-year autism caseload such that I only used data up to 2000?

You see, autism prevalence by birth year series always have a hook shape on the right hand side of the graph. It doesn't matter if I survey the prevalence in 2004 or 1994. They always do. The following is an IDEA graph representing prevalence by birth year, as reported in 2001, 2002 and 2003.

Not only is there a natural decline in prevalence by birth year because some autistics are diagnosed late; it's also the case that prevalence by birth year data is not fixed in time. If we request new data from Califonia DDS next year, the data potentially changes in all birth years, and it likely changes considerably in recent birth years.

This is a common mistake. Mark Blaxill has fallen for it. The Geiers have as well, assuming they didn't know what they were doing.

One way to solve the issue is to left-censor the data. Basically, you only consider the birth year data that is more likely to remain stable in the future.

I believe a much better way to solve the issue (although this is not always feasible) is to use data on prevalence by a given age in a given year, e.g. prevalence of 3 year olds in the system in a given year. This data shouldn't change with time. This is the type of data that was used when there was a debate over the expected decline in the California DDS 3-5 caseload. And as you may recall, the 3-5 prevalence continued to increase.

Since California DDS provides birth year data as reported in different years, we can estimate the caseload of autistic 3 year olds from, say, 2000 to 2007. You basically look at each of the 32 files (8 years times 4 quarters) for the years we're interested in, and get the birth-year caseload of the report year minus 3. The resulting graph follows.

This is an approximation, of course. Consider that on 03/2002, the number of children born in 1999 will not be as many as you'll have in 12/2002. Hence the seesaw pattern.

The point is that Scientist Mom is mistaken in her finding that the prevalence of autism dropped or was stable after 2002. This completely undermines her analysis, since that was her key claim.

Is Precipitation Associated with Autism? Now I'm Quite Sure It's Not.

2008-11-06T07:58:00.001-08:00

In the last post I attempted to confirm if there was a naive ecological state-level association between precipitation and IDEA autism prevalence. To my surprise, there wasn't, and there was no need to control for urbanicity.

Technically what the result means is that, just considering this one analysis, we can't reject the null hypothesis. Of course, one could argue that state-level data is poor. The confidence interval is too big, and a real effect could easily hide in it. (In part this is what "not being able to prove a negative" means).

So I couldn't leave it at that. I wanted to confirm it in some other way. I remembered I had birth-year caseload data from California DDS dating back to 1920 (contiguous since 1930) that David Kirby had originally requested, and a copy of which I had obtained in order to rebutt one of his posts. This is data from a file called AUT_200703.xls contained in Job5028.zip, which may be requested from California DDS. Corresponding precipitation data is not difficult to obtain.

The year range I will use is 1930 to 2000. (I'm left-censoring autism caseload starting at 2000). For precipitation we have to assume some sort of a lag. I will use precipitation at 1 year of age. The autism and precipitation time series follow.

The time series in themselves don't look very promising, do they? But I wanted to apply some math to them in order to confirm if there's at least a trend, even if not a statistically significant one.

Whenever you compare two time series, there's always a possibility that you'll end up with a pirates vs. global-warming type of association. There are different ways to control for this. One that I particularly like is called detrended cross-correlation analysis (Podobnik & Stanley, 2008). Basically, you remove the trends from the series, and then compare them. The reason I like this technique is that it's intuitive, can be illustrated graphically, and is easy for anyone with passing knowledge of Excel formula syntax to reproduce.

Now, one problem is that there isn't something we can call the trend of the time series. There are many different ways to model trends. What we should ideally do is try many different types of trends, e.g. linear, quadratic, and cubic. For simplicity I will skip the linear and quadratic trends (they don't look adequate) and use cubic trend lines, which you can see in the graph above.

The following graph represents the cubic detrending of the original time series.

At this point we can just put the detrended data points in a scatter chart and see if there's an association.

This is the kind of scatter you'd expect to see if you compare two completely independent random variables. That is, you see a random distribution of dots and a linear regression slope that is almost completely horizontal.

Of course, we're still left with the problem of not being able to prove a negative. The slope of the linear regression is 0.11 (0.11 more California autistics for every extra inch of rain in a year) with 95% confidence interval of -3.896 to 4.133.

But I think the scatter graph is compelling. What we see in it is entirely consistent with a complete lack of association between autism and precipitation.

Is Precipitation Associated with Autism? Apparently Not.

2008-11-05T06:53:00.000-08:00

A while back I wrote a critique of the TV hypothesis by Waldman et al. I noted the likely confound is population density, which should not be considered a "fixed effect" in Waldman's methodology (an interesting statistical methodology that is apparently used in Economics frequently). When we talk about population density as a confound, we're really using it as a proxy of other confounds that are clearly not fixed in time. These more specific confounds could be things like awareness, availability of autism specialists, etc.

In general, studies like Waldman's and Palmer's likely suffer from the fundamentally incorrect assumption that regional differences in the administrative prevalence of autism reflect a real difference in actual prevalence. But I do believe it is possible to use administrative data to draw preliminary conclusions, so long as confounding factors are accounted for.

My intention in writing this post was to walk through an analysis of publicly available data, controlling for population density, to see if the rainfall effect remained. I fully expected there to be a naive ecological association between precipitation and autism. To my surprise, the effect didn't appear to exist in the first place at the US level, and there was no need to control for confounding.

The following is a scatter graph of annual precipitation by state (1971-2000) vs. the 3-5 IDEA prevalence of autism (estimated for 2006).

There's not even a trend in the expected direction. This is quite the head-scratcher, and it left me wondering what was going on. Why is it unexpected? Let's first look at a population density map of the US.

It would be reasonable to expect that counties with a higher concentration of people will have higher rates of autism diagnoses, due to increased awareness and a greater availability of autism specialists. Let's now look at a map of precipitation in the US.

The correlation between precipitation and population density is quite clear, isn't it? Why didn't we see an association trend in the expected direction in the scatter graph then? First, it seems that a few states bring the slope down. These would be states with a low autism prevalence but high precipitation rates, like Louisiana, Alabama and Mississippi.

That's a bit of bad luck for Waldman et al. Additionally, we don't have that many data points. There's unfortunately too much variability in this US-level data, which makes it pretty inadequate. Perhaps using 6-11 IDEA prevalence would be better than 3-5 prevalence. In any case, it's doubtful statistical significance would be achieved, and even if it were, it is doubtful it could withstand controlling for population density.

I think the association needs to be revisited in a different way. But this exercise left me wondering why Waldman et al. decided to only look at counties from certain states, namely, California, Oregon and Washington (with California not showing a clear association).

I'm going to suggest cherry-picking might have occurred when it comes to Oregon and Washington. In order to argue this point, I will simply post population density and precipitation maps of each of these states. You will see that the pattern in these two states is fairly unique. Most people live in the west side of the state, and that's also where it rains.

To summarize: (1) It was not easy to confirm the reported association. (2) Analysis of any such associations should account for population density. (3) Cherry-picking might have occurred in this particular case.

Are the children of first-generation immigrants more likely to be autistic?

2008-07-24T18:33:00.000-07:00

I've known about this for about a year, but I never got around to writing about it. I was reminded of it by a recent David Kirby post where he informs us that "an unusually large proportion of Somali-speaking children in Minnesota have autism." I suppose David Kirby is trying to make this about vaccines. The thing is that a link between autism and immigration has been suspected since at least the 1970s, even though it apparently never became an area of research that interested many investigators. Let me just quote from some abstracts, in chronological order.

Harper & Williams (1976): "In a survey on the occurrence of infantile autism in New South Wales it was found that 21-9% of children had at least one foreign-born parent whose native language was not English."

Gillberg et al. (1987): "Urban children with autism more often than age-matched children in the general population had immigrant parents from 'exotic' countries."

Gillberg et al. (1995): "The prevalence for autistic disorder in Göteborg children born to mothers who were born in Uganda was 15% which is almost 200 times higher than in the general population of children."

Gillberg & Gillberg (1996): "Fifteen of these children (27%) were born to parents, at least one of whom had migrated to Sweden."

Bernard-Opitz et al. (2001): "Discussion focuses on possible risk factors and psychosocial adversities for autism such as a high frequency of caregivers who are foreign maids, the use of multiple languages and the high level of punitive educational practices."

Lauritsen et al. (2005): "An increased relative risk of 1.4 was found if the mother was born outside Europe, and in children of parents who were born in different countries."

Maimburg and Vaeth (2006): "The risk of infantile autism was increased for mothers aged >35 years, with foreign citizenship, and mothers who used medicine during pregnancy."

Kolevzon et al. (2007): "The parental characteristics associated with an increased risk of autism and autism spectrum disorders included advanced maternal age, advanced paternal age, and maternal place of birth outside Europe or North America."

There are reports along these lines from Canada as well. In fact, this was discussed in Interverbal's discussion of critiques of Fombonne et al. (2006).

Now, the first thing we need to ask ourselves about these findings is whether they document an actual phenomenon or an artifact. Is there a confound that explains the apparent association?

But if in fact there's an association, what explains it? We don't really know. You will find some unsubstantiated speculation based on old ideas in the cited abstracts, some speculation that I'm sure many readers will find objectionable. It's not surprising to find these types of explanations in old papers, though. If I may engage in some speculation of my own, based on newer ideas, I would say that maternal stress during gestation – see Kinney et al. (2008) – cannot be discounted.

Finally, I'd like to bring attention to Roberts et al. (2007), a study claiming to associate autism with proximity to agricultural pesticide applications in the California Central Valley. The authors stated that they could not dismiss the possibility that the women studied may be disproportionately employed in agriculture. It just so happens that immigrant women also tend to be disproportionately employed in agriculture.

Anthropogenic Global Warming is Absolutely Occurring

2008-06-20T09:10:00.000-07:00

[Reposted at Residual Analysis.]

I need to ask for the reader's indulgence, as this post is not about autism, except insofar as determining the merit of correlations has become a perseveration of mine. You see, it is trivial to come up with naive correlations of autism trends vs. practically anything about the modern world. The administrative prevalence of autism has been increasing almost always since records have been kept. Concurrent upward trends of nearly anything, from vaccines to environmental pollution, from trans fats to electromagnetic radiation, and so on, are easy to come by.

In my latest post at LB/RB I suggested that instead of correlating trends in a naive manner, we could attempt to correlate the residuals of time regression models of each trend. A residual is a delta or difference between an observed value and a modeled value. (Here's a concise explanation).

When modeling real world phenomena, regression models will never (or almost never) be perfect fits. For all sorts of reasons, even if simply random fluctuation, there will be deviations from a modeled trend. If there's a causative relationship between two trends, the residuals of (or deviations from) corresponding close-fitting regression models should correlate with one another as well. By this I don't mean that the residuals should always be in the same direction; but they should be in the same direction more often than not, in average.

The nice thing about this technique is that it is completely accessible to anyone with Excel installed. It can also be illustrated graphically, as the reader will see.

So it occurred to me to test this idea in a different field of science where there's controversy over correlation vs. causation. I thought global warming would be a great candidate. After all, the spoof about a decrease in the number of pirates correlating with many other arbitrary trends appears to originate in the global warming debate (see this).

To summarize what I found, there is a strong and statistically significant correlation between cumulative human CO₂ emissions and northern hemisphere temperature anomalies. Because of the methodology used, I'm quite confident this cannot be explained by coincidence, data collection errors, solar output as a confound, or causation in the opposite direction.

Now, I fully recognize that I'm only superficially familiar with the debate over anthropogenic global warming. I am also not versed in climatology. Therefore, I cannot be entirely sure that this type of analysis hasn't been done before. Google and Google Scholar searches didn't seem to turn up anything, and given the importance of the topic, I thought it was not only prudent but necessary to put this evidence out there. As always, scrutiny and discussion are welcome.

Northern hemisphere temperature data from 1850 to 2004 was obtained from the Climatic Research Unit of the University of East Anglia, UK.

Global CO₂ emission data was obtained from CDIAC. I did not use CO₂ atmospheric concentration data because temperature increases can theoretically cause this concentration to increase. Human emissions are what we're interested in. More specifically, I calculated cumulative CO₂ emissions for every year since 1850. Greenhouse temperature anomalies are presumably caused by the total amount of CO₂ in the atmosphere, not by the emissions in any given year. Since CO₂ stays in the atmosphere for 50 to 200 years (source) modeling the cumulative human contribution of CO₂ should be adequate enough.

Figure 1 (click to enlarge) is a graph of the general time trends of these two sets of data. It also shows the modeled trend lines we will use to calculate residuals. In this analysis we're using third-order polynomial models. They seem to give a considerably closer fit than second-order polynomial models.

I calculated the residuals and built a scatter graph matching cumulative CO₂ (X axis) and temperature (Y axis) residuals for each year from 1850 to 2004. As expected, the slope of a linear regression of the scatter was positive (1.9x10^-5) and statistically significant (95% confidence interval 1.13x10^-5 to 2.66x10^-5).

[Note: Instructions on how to calculate the slope confidence interval of a linear regression with Excel can be found here.]

I suspected, however, that there should be lag between cumulative CO₂ fluctuations and temperature fluctuations. It presumably takes some time for heat to be trapped. I proceeded to create a moving average trend line of the temperature residuals. It did in fact have a similar shape to the cumulative CO₂ residuals graph, but it appeared to lag it by about 10 years. The reader should be able to roughly see this lag in Figure 1.

So I re-ran the whole analysis by only considering the years 1850 to 1997 and correlating CO₂ residuals with residuals of temperature 10 years later. The correlation between these two sets of data is remarkable. Let's start with a bar graph of both sets of residuals, Figure 2.

Figure 2 is a good graph to get a subjective sense of the correlation. Let's see if the math confirms this. Figure 3 is the scatter graph of the residuals.

The slope of a linear regression of the scatter is 2.6x10^-5, and it is statistically significant (95% confidence interval 1.88x10^-5 to 3.33x10^-5). Even the 99.99999999% confidence interval is entirely positive. Unless anthropogenic global warming is a reality, there is no apparent reason why the residuals of cumulative human CO₂ emissions should correlate so well with the residuals of temperature 10 years later throughout the last 150 years.

The slope of the scatter is actually more steep than expected, if you consider the naive correlation between cumulative CO₂ emissions and temperature. There are probably several reasons for this. The one I believe to be the most likely is that over time CO₂ does get removed from the atmosphere. Adding this consideration to the analysis should produce a more accurate slope. The other potential reasons don't bode so well for our species.

Critique of Palmer et al. (2008)

2008-05-02T12:46:00.000-07:00

I have posted a critique of Palmer et al. (2008) over at LB/RB. The paper claims to associate autism with coal-fired power-plant emissions, particularly mercury. I argue that the control for urbanicity in the paper is limited. Then I illustrate how it is that population density mediates the correlation in California.

I prefer that comments be made over at the LB/RB post.

Change in Comment Policy

2008-04-10T17:00:00.001-07:00

This doesn't mean that this blog is necessarily becoming active again, but I've decided I need to change my comment policy, as you can see in the blog's description above. The new policy is basically the same lenient policy I've had before specifically designed to encourage critical comments and rebuttals. In general, comments are not deleted unless they clearly violate Blogger's content policy. Messages that violate the policy include things like spam, threats of violence or death, pornography and so forth. In addition to this, from now on I will delete any comments from the following persons:

John Best Jr. (AKA Fore Sam)

As everyone knows, John does not contribute to any discussion in any productive way, and simply disrupts comment threads. Furthermore, recently he has made unacceptable personal accusations which he cannot support. For this reason, he is the first commenter to be permanently banned from this blog.

Pleasantly Surprised by David Kirby and Dan Olmsted

2008-04-09T07:12:00.000-07:00

Orac over at Respectful Insolence has received a response to his open letter to David Kirby and Dan Olmsted regarding the Seidel Subpoena. Their response reads as follows.

We both take this matter very seriously, and strongly oppose any effort to subpoena the records of Ms. Kathleen Seidel. We have also clearly expressed our feelings to Mr. Shoemaker. While we may not agree with her opinions, we consider Ms. Seidel to be a colleague. Rights to privacy, and to free speech as guaranteed by the First Amendment, must be upheld for all. We urge Mr. Shoemaker to reconsider, and drop this action against Ms. Seidel.
David Kirby Dan Olmsted

I have to admit that was very big of both of them. They did not try to be apologetic. No "yes - but" or anything like that. For this I applaud them.

I had previously said the letter would be a test of the ethical standards of both journalists. It was. And they passed. I had my doubts that they had it in them. I apologize for any suggestion on my part to that effect.

Conficts of Interest Disclosure

2008-04-06T15:42:00.000-07:00

As everyone knows, a couple of worthless pieces of shit from the mercury militia have gone after Kathleen and another blogger by means of legal bullying, with the presumed intention to not only silence two important voices of dissent but also to chill much of the neurodiversity and skeptical blogsphere.

After Kathleen was subpoenaed, she filed a top-notch motion to quash, where she happened to disclose the sort of revenue that is generated by running the site neurodiversity.com (incidentally, apparently less than its maintenance costs). I see that at least D'oC, Kassiane and Liz Ditz have also disclosed their conflicts of interest.

Earlier today Orac over at Respectful Insolence posted An open letter to David Kirby and Dan Olmsted about the Kathleen Seidel subpoena essentially asking Kirby and Olmsted to issue a position statement on what is now being referred to as the "Seidel Subpoena." Evidently, the letter will end up testing the ethical standards of these two autism journalists – as they are often thought of.

In the comments section of Orac's post, the question came up as to David Kirby's and Dan Olmsted's source of income. I think this is a legitimate question. After all, they do not appear to be employed by any major media. They are not parents of autistic children. They are not autistic. So are we to assume they write about autism because of their love of journalism? It doesn't seem plausible to me, and unlike Shoemaker's apparent suspicions regarding Kathleen, it's not necessary to invoke major conspiracy theories to conclude that Kirby and Olmsted must be payed by an organization with significant funds. I believe it would be of interest to find out whether, as some have suggested, David Kirby and/or Dan Olmsted are receiving money from parties with a stake in vaccine litigation.

Of course, neither Kirby nor Olmsted have an obligation to disclose this. No one is going to drag them to court to force them to disclose how they make a living; at least I sincerely hope not. I have decided to disclose my conflicts of interest, nevertheless. Of course, this is all done under the honor system, and that's fine. I'm willing to take Kirby's and Olmsted's word about their disclosures, if any. Other bloggers who write about vaccines and autism (from any side of the debate) should feel free to use my template below.

How much money do I make blogging?

I make exactly $0 (Zero US dollars) blogging about autism. As you can see, I don't have any ads in this blog, nor do I think I would make much money to speak of at my current traffic. I do not get payed to blog by anyone, be it pharmaceutical companies, the government, or the Illuminati. I currently do not take donations.

Why do I blog?

I blog about autism because I am the parent of an autistic child and because I am autistic myself. I also blog about autism because of my interest in science and scientific skepticism.

What is my occupation?

My formal employment is in an area of IT that is not related in any way to autism, disability, health care, vaccines or pharmaceuticals.

What about other income?

Believe it or not, I do not own any stock in any company of any kind, not even through mutual funds or 401Ks or anything of the sort. (I don't own a single credit card either). What can I tell you, I'm a strange guy.

The vast majority of my income comes from my formal employment. I do make perhaps and additional $15-$50 a month from hobbies that have nothing to do with anything I write in this blog. That is the extent of my income.

Clifford Shoemaker, What a Dick, Plus Other Views

2008-04-04T10:03:00.000-07:00

I've decided to interrupt this blog's hiatus to bring you an important message; one that is actually uncharacteristic for this blog. And that is this: Clifford Shoemaker is a dick-face. In my opinion, that is.

Now let's go over select opinions on the matter around the blogsphere.

Pooflingers Anonymous in Another Day, Another Gasket...

For shitbag lawyer Clifford Shoemaker: grow the fuck up and stop being a fucking thug... or eat a big, steaming pile of my favorite dish. I prefer "grow up", but it's your damned choice.

Letting Off Steam in We Are All Kathleen Seidel

Obviously the American anti-vaccination brigade cannot abide the fact that their arguments are being countered anywhere at all and are seeking to tie Ms Siedel up in legal knots.

Rev. BigDumbChimp in Anti-Vaccination Parents stoop to new lows

As many around the blogosphere have noted, there doesn't seem to be any supportable reason for this subpoena other than being a fishing expedition to try and flush out some paranoid fantasy of the Sykes that Ms. Siedel is an agent of Big Pharma or the government and/or to try and intimidate her into silence.

Pharyngula in Attempted suppression of Seidel

My sympathy is limited, however, by the fact that are lashing out seeking to blame someone, have bought into the thimerosal hysteria, have hired a bottom-feeding shyster to sue various pharmaceutical companies, and said unethical ambulance-chaser is now using the power of the subpoena to harrass and intimidate bloggers who aren't at all involved in the case, but have simply written about the absence of a thimerosal-autism link.

Whose Planet is it Anyway? in Clifford J. Shoemaker and Lisa Sykes: Putrid Lawyering

The next thing you know, they'll be wanting us to appear personally in court to prove that we don't have green tentacles. (Note to self: after returning from secret meeting aboard flying saucer, inspect blog sidebar picture carefully to make sure all tentacles have been completely edited out.)

Popehat in Vaccine-Litigant Thuggery: Subpoenaed For Blogging

Mr. Shoemaker, shame on you. You bullying is contemptible, and if there is any justice in this situation, you will get your critic-intimidating, oversensitive ass handed to you in the motion to quash.

The Voyage in Neurodiversity Blogger Unfairly Subpoenaed

Why would they want a judge (or whomever is responsible for deciding on these matters) to read all of Kathleen's work which shows their claim for what it truly is. She also details Sykes' involvement in the Griers IRB which approved their "research" on chemical castration agent, Lupron, as one of the cornucopia of supposed treatments foisted on autistic children, among them, the son of Rev. Sykes.

Crux of the Matter in Blogger on autism hit with subpoena

Given this incident, however, I would have to say there appears to be more to this whole anti-vaccine matter than meets the eye. In fact, all the subpoena has done is question the motivation behind the intimidation directed at Seidel personally. I mean, requesting personal bank records is way over the top. While I don’t necessarily agree with Seidel’s point of view on all matters, she does bring up some excellent points and I recommend readers take the time to read some of her writings.

Pure Pedantry in Autism cranks attempt to intimidate blogger by subpoena

However, if you are determined to advocate that point of view, let me advise against acting like malicious thugs. That is exactly what this is. It is a flagrant attempt to silence free speech. It is a flagrant attempt to silence the free press. It is a flagrant attempt to silence good science with fear and litigation.

GM/WM in Evidence of Slime

Shoemaker and Sykes (if I understand the subpoena correctly) are trying to figure out if Kathleen is being led around by and paid by shadowy figures who feed her information and direct her to persecute Lisa Sykes for her religion and parenting skills or something.

Autista in Rediculous

If the judge allows the subpoena, then no one will be able to blog freely on any subject. We will all be afraid that everything from our tax returns to our church attendance will be on trial if someone launches a civil action that has some connection to the topic we are discussing.

Law And More in Olson's Trumpet - Blogosphere Unites Behind Kathleen Seidel

This is the most important legal and ethical story in the blogosphere since DrudgeReport.com outed Monicagate. Hourly, we are checking in on the latest developments.

Respectful Insolence in More legal thuggery, this time against Neurodiversity.com

A common characteristic of cranks and denialists, be they antivaccinationists or large corporations or whatever, is an intolerance of criticism for their views. All too frequently, this has taken the form of the abuse of the legal system in order to try to silence their opponents... Mr. Shoemaker is a despicable scum-sucking piece of excrement.

Overlawyered in Vaccine lawyer subpoenas Kathleen Seidel

Instead, the first phrase that occurred to me on looking through the subpoena was "fishing expedition", and the second was "intimidation". Several clauses indicate that Shoemaker is hoping to turn up evidence that Seidel has accepted support from the federal government, or from vaccine makers, which she says she hasn't.

Impact of Treatment on Self-Concept

2007-11-19T11:44:00.000-08:00

This doesn't exactly have to do with autism, but I thought it would be of interest to my readers nonetheless.

Strength training can have unexpected effects on the self-concept of children with cerebral palsy. Dodd KJ, Taylor NF, Graham HK. Musculoskeletal Research Centre, School of Physiotherapy, Faculty of Health Sciences, La Trobe University, Victoria, Australia. K.Dodd@latrobe.edu.au PURPOSE: This study was designed to evaluate the effect of a home-based progressive resistance strength-training program on the self-concept of children with cerebral palsy. METHODS: A randomized, controlled trial was used to evaluate the effects of a six-week strength-training program on self-concept immediately after completion of the program (week six) and at a follow-up session held 18 weeks after the initial assessment. Seventeen children [eight boys, nine girls; mean age 12.1 years (SD 2.5)] with spastic diplegic cerebral palsy were recruited. Participants in the experimental group completed a home-based progressive resistance strength-training program using three exercises to strengthen the major support muscles of the lower limb. Participants in the control group undertook their normal daily activities. Self-concept was measured by the Self-Perception Profile for Children. RESULTS: Overall, the self-concept of both groups was positive at baseline and at six and 18 weeks. However, compared with controls, the experimental group showed decreased self-concept in the domain of scholastic competence and a trend for a decrease in social acceptance at six weeks. At follow-up, the experimental group had reduced self-concept in the domains of scholastic competence and social acceptance compared with the control group. CONCLUSION: These unexpected results suggest that participation in a relatively short home-based strength-training program may have an inhibitory effect on the self-concept of children with cerebral palsy. Despite the inhibitory effect, self-concept in the experimental group remained positive after strength training, suggesting that clinicians should not be overly concerned about the psychological effects of the intervention.

I believe this study has implications of note on the kinds of outcome measures that should be considered in disability treatment trials. Effectiveness is obviously not the only consideration that matters.

Quick Note About Low vs. High Functioning

2007-11-03T16:51:00.000-07:00

The other day Harold Doherty wrote a post where he proclaimed that science had demonstrated that what are called high functioning and low functioning autism are different entities.

I believe this highlights a basic misunderstanding of the criticism of the validity of the low vs. high functioning labels. No one has ever claimed that those classifed as low functioning are biologically exactly the same as those classified as high functioning. In fact, I'm not surprised at all that neurological differences would be found when you make group comparisons of this nature. I would expect the same to be true when you compare almost any two behavioral phenotypes. (I also questioned Harold's view that Jenny McCarthy could yet be proven correct, in light of the neurological findings whose significance he was endorsing, but that's neither here nor there.)

I believe a similar misunderstanding occurs when I speak of autism as a cultural construct. This seems to be taken as "autism does not exist" or "autism is basically the same as normality" which is not at all what that means.

The main technical criticism of the low vs. high functioning classifications, in my view, is that they are inconsistent. Sometimes autistic disoder means "low functioning" whereas Asperger's means "high functioning." It's not clear where PDD-NOS is. Other times, high IQ means "high functioning" whereas mental retardation means "low functioning." Then again, lack of speech could mean "low functioning" while having good speech indicates "high functioning." Some like Harold would seem to want to redefine "low functioning" to be associated with behaviors such as self-injury. None of these different ways to separate low from high functioning - none - are consistent with one another.

There are also critiques of the classification from the perspective of disability rights. Joel discussed this recently.

Rebuttal of Israel's Response to "School of Shock"

2007-10-31T10:07:00.000-07:00

Matthew Israel of the Judge Rotenberg Center has been posting a link to his response to Jennifer Gonnerman's article titled "School of Shock." This is a rebuttal of said response.

Every surgical, dental or medical treatment involves discomfort, risks or costs on the one hand, and expected benefits on the other. For most persons a reasonable approach is to weigh the discomfort/risks/costs against the potential benefits in deciding whether to undergo or approve the treatment.

There's a clear difference between the JRC's "treatment" and surgical, dental or medical treatment. First of all, infliction of pain is not a means to an end in any of the analogies mentioned. Pain is simply a side-effect of the treatment. Furthermore, in each of these cases, measures are taken to reduce discomfort. That's what anasthesia is for! So the analogy is poor.

I'm leaving aside whether the behaviors "treated" are true medical conditions in all cases, and whether the "treatment" itself is medical.

In the case of certain treatments, however, there are some persons who, for religious or philosophical reasons, are unwilling to weigh the negative aspects of those treatments against the potential benefits. These persons view the treatment in question as Wrong with a capital “W”, regardless of the potential benefits the treatment might produce. For example, Christian Scientists oppose the use of medical interventions, and Scientologists oppose the use of psychiatric drugs, regardless of what potential benefits may ensue.

What is this irrelevant nonsense? I'm picturing an immate of the JRC objecting to being tortured for "philosophical reasons." Is he serious?

Opponents of behavior modification treatment that involves aversives(sometimes referred to as “aversive therapy”) are similarly unwilling to weigh the discomfort, risks or costs associated with aversives against the potential benefits—even when those benefits could be lifesaving, life-improving or life-extending. Such persons prefer to brand aversives as “Wrong,” refusing to recognize them as part of a relatively new behavior modification treatment procedure2, and many of them sometimes do whatever they can to prevent anyone else from using them. It is clear from Ms. Gonnerman’s article that she is one of those persons.

Here I'm going to have to say that Mr. Israel is using "aversives" as a euphemism for torture. At a different time we can discuss "aversives" as they are used in behavior modification. For example, Lovaas recommends slapping a child on the rear and yelling "No!" Many of us find this in itself objectionable, but I don't think this is what we're talking about right now.

Torture is defined as "any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity" (Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, 1987).

Allowing the Judge Rotenberg Center to exist would appear to be in violation of international law under this definition. If the JRC immates were Al-Qaeda terrorists instead of the developmentally disabled, I'm sure Amnesty International would be on the case sooner than you could say "Abu Ghraib."

Ms. Gonnerman is so intent on indicting the Judge Rotenberg Center (“JRC”), the only special needs school in the country that offers this form of therapy, that she violates the normal journalistic ethics of presenting both sides of a controversial issue. Out of a total of 265 column inches that her article occupies, only 15 inches (6% percent of the article) present any of the benefits of JRC’s treatment. Even those few accounts of parents (characterized as “desperate parents”) or students who speak positively about JRC are presented with snide comments, disparaged by unfavorable observations or reported in the least favorable light possible.

Here Mr. Israel is making the common mistake of confusing journalistic balance with "equal time." This is actually a big problem in science reporting, where fringe ideas are often portrayed as being on equal footing with accepted and tested theories (source).

Summary

Matthew Israel's response to "School of Shock" contains several false analogies and demonstrates a lack of understanding of certain concepts. Hence, it adds little value to any discussion about the need to stop torturing people. Perhaps if we were to strap one of those JRC backpacks to Mr. Israel, and we were to administer a shock every time he comes up with a response of this quality, such responses might improve in time. (I'm of course not serious about that last part.)

Dr. Adams: Is there a paper in the horizon?

2007-10-27T09:31:00.000-07:00

Back in June, 2006, Dateline NBC did a story titled The unorthodox practice of chelation which was primarily about a small double-blind trial on chelation therapy that Jim Adams and colleagues had designed. The following is an excerpt of the interview where Dr. Adams is asked about publishing potential negative results of the trial.

John Larson: What happens in the end, after all this hard work? If you find that there really is no relation between mercury and autistic behavior. Will you be disappointed? Jim Adams: Disappointed, yes. But whatever way it turns out, we’ll report it. If it doesn’t help, we’ll report it. And if it does, we’re gonna report that, too.

When were the results expected? End of 2006.

Jim Adams predicts he'll have the final results of his study by the end of the year, and we'll have them first, here on Dateline.

Whatever flaws the trial might have had, it is worrisome that this much time has elapsed since the results were supposed to be made available either to the media or in the form of a paper. I don't know the reasons for the delay. Maybe there are valid justifications, maybe there aren't. D'oC over at Autism Street already discussed the delay back in June.

There are surely ethical questions as to whether such a trial should be done in the first place. But it seems to me that more serious ethical questions are raised by a failure to publish results.

Why do I say this? First, there's a general issue of scientific ethics. Imagine what would happen if researchers had the habit of sitting on results they don't like. The literature would be filled with self-selected results and random noise beyond what would be expected by mere chance.

Second, suppose the study had found there are therapeutic effects to chelation therapy. It would appear to me that the sooner the results are published, the sooner bigger and better replications of the study could be carried out to identify responders, and the sooner children could be treated.

Third, suppose the study determined there are adverse effects to the treatment. Considering the popularity of chelation therapy, it would certainly be wrong to withold this kind of information.

Is it plausible that chelation with DMSA was found to have adverse effects? Yes, in fact, a trial of DMSA with rats had found that, in the absense of lead intoxication, it could contribute to cognitive deficits (source).

Additionally, even though a paper has not been published, preliminary results from the trial are known because of presentations Jim Adams has done, e.g. Preliminary Results of 3rd DMSA Study (2007).

Dr. Adams compares a group receiving 7 rounds of DMSA vs. another getting 1 round of DMSA. In a global impression scale, 8% of the children getting 7 rounds are found to be doing slightly worse or worse vs. 0% of the children who got 1 round of DMSA. Of those who got 7 rounds, 87% are found to be doing slightly to much better vs. 84% of those who got 1 round. In the "No Change" category we find 17% of children who got 1 round vs. 4% of those who got 7. (You'll note that those percentages don't add up, but that's how they are reported in the presentation.)

This brings up a question as to whether about 8% of the children suffered adverse effects after only 7 rounds.

Dr. Adams also finds that DMSA increases excretion of potassium and chromium, and that it raised glucose and triglycerides.

Reptilian Shape-Shifting Alien Takes Over Lenny's Body

2007-10-24T06:03:00.000-07:00

There's an interesting discussion over at EOHarm. It started when Lenny Schafer posted the following.

Hello, I have inquiries along the lines of this letter from a Schafer Autism Report reader. Most of the explanations I can come up with sound a little weak. Have any EOHarm list participants seen anything new from our side to help explain the question. I am looking for a response to put in the SAR. I am sure many of my 20,000 readers would like to some sort of explanation. Lenny Dear Mr Schafer, Shouldn't we be seeing a downturn by now in the rate of diagnosed autism now that thimerasol has been removed from all childhood vaccines in California for a few years now? Do you know what the proponents of the theory have to say on the matter? I was dismayed to see the news item in today's report about the most recent numbers from the DDS. Puzzled in Mtn View.

(EOHarm message #67007)

Fellow EOHarmers explained that it's not just thimerosal in vaccines. There are other things going on with the environment. But Lenny countered that the thimerosal hypothesis was supposed to be the strongest hypothesis, not a marginal part of a general environmental hypothesis.

The strongest hypothesis we have out there for the cause of autism is the Mercury Hypothesis. This is not the Mercury and Everything and the Kitchen Sink Hypothesis. Nobody every said it was only mercury, only that it's the best suspect. The mercury is mostly out of vaccines and we should have seen some drop, not increase in autism if the Mercury Hypothesis carries weight, I would think.

(EOHarm message #67018)

It was then explained to him that thimerosal is still in the flu vaccine, that trace amounts are still there, etc. He wouldn't budge. After all, if the "epidemic" of autism was supposed to be caused by an increase in the thimerosal dose per child in pediatric vaccines, why wouldn't a substantial decrease in the dosage reverse the epidemic?

Yes, yes. But there should still be some drop.

(EOHarm message #67034)

EOHarmers tried everything. They said that any dose could sustain the epidemic; that perhaps only a decrease in severity would result. Some decided it was time to blame a different type of vaccine; maybe Wakefield was right after all. They talked about the importance of keeping the faith. Finally, someone said, "how do you know thimerosal has really been removed?" But it didn't really work.

If true, this would be the best explanation of them all, not to mention the biggest travesty. It shouldn't be too hard to test this. Random analysis of vaccines.

(EOHarm message #67038)

He thought about it further and came back with the kind of whopper that is only ever overheard in skeptical blogs.

This is another important missing element in support of the mercury hypothesis: where are the whistle blowers? Even amongst the worst thieves and scoundrels, there are a few who eventually seek to tell the truth and find atonement for their sins. Where are they? (Rhetorical question).

(EOHarm message #67113)

When asked why the question was rethorical, he answered as follows.

The question, "wherefore art thou whistle blower" is posed rhetorically because the obvious answers are unsatisfactory to the mercury hypothesis: 1. They are still in hiding after so long. 2. They don't exist.

(EOHarm message #67125)

Lenny's a goner I'm afraid. The Illuminati have him now. Well, that or, you know, something called cognitive dissonance finally kicked in.

Either way, what do you think Lenny Schafer should say to his readers? Let's help him out.

When the Mainstream is Mistaken: The Case of ABA

2007-10-22T10:06:00.001-07:00

As regular readers might have noticed, Natural Variation is, for the most part, what one might call a "skeptic blog." This, however, doesn't mean that I generally bow to scientific authority, and on occasion you will see me question mainstream views, if I feel there are rational arguments that can be advanced to question such views.

This time I will question the view that ABA/EIBI is an evidence-based autism treatment. Let me start by quoting what major mainstream authorities think of it.

Behavioral training, including communication development, has been shown to be effective in reducing problem behaviors and improving adaptation. There is a growing body of evidence that intensive early intervention services for children in whom autism is diagnosed before 5 years of age may lead to better overall outcomes.

(American Academy of Pediatrics, 2001)

Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning and appropriate social behavior.

(The United States Surgeon General, 1999)

Impressive, right? I will summarize reasons why some of us feel these statements were premature and not entirely supported by the data. Most of this has already been noted by Michelle Dawson and Morton Ann Gernsbacher, who have done a remarkable job of advancing science-based criticisms of ABA.

There are no randomized trials of ABA (with or without blinded assessments) demonstrating its broad effectiveness against "eclectic" management approaches.
One randomized trial of ABA (Smith, Groen & Wynn, 2000) was conducted to "address criticism of previous research and to increase methodological rigor." It compared a group treated with Lovaas-style ABA against a group receiving parent-instructed treatment. Only 13% of the children in the experimental group achieved "best outcome" (mainstream placement without support). No statistically significant group differences were found in either of two language scales. The paper reports a difference, but there was an error in the data analysis (Smith, 2001). No differences were found in socioemotional functioning or in adaptive functioning. Marginal differences were found in other measures.
There are controlled trials, such as Howlin et al. (2007), which have not found EIBI to be effective compared to autism-specific nursery provisions.
Adult outcomes of children who had received Lovaas-style ABA have not been reported in the peer-reviewed literature. Children from the experimental group of Lovaas (1987) must now be in their 20s and 30s. What would be the point of short-term gains if, hypothetically, adult outcomes do not differ from those of autistics who did not receive intensive interventions?

Specific Criticism of Lovaas (1987)

It is probably fair to say that the reason ABA gained mainstream acceptance was the widely reported "recovery" rate of 47% resulting from Lovaas (1987). In fact, the Surgeon General of the United States makes reference to it. The methodology of this landmark paper has been widely challenged, however.

There was no randomized assignment into groups.
Assessments were not blinded.
Male-female ratios in the experimental group and control group 1 differed from the ratio normally reported for autism (Boyd, 1998).
IQ assessment tools differed between intake and follow-up.
It is highly improbable that the reported ranges of intake IQ in Lovaas (1987) match the experimental group average IQ of 63 (source). In fact, the ranges are inconsistently reported.

Comment

There is a substantial body of Level-II-1 and lower quality evidence that suggests EIBI is an effective treatment approach. However, since there exists Level-I, Level-II-1 and other evidence that EIBI is not terribly effective, and also considering the lack of adult outcome studies, the statements by the Surgeon General of the United States and the American Academy of Pediatrics seem premature. Indeed, the trial which appears to be the most methodologically rigorous to date (Smith et al., 2000) was largely unsuccessful. The statements are also unfortunate because lowering standards of evidence could allow quackery in the door, and could result in us having to deal with "evidence based" woo.

The Importance of Acceptance

2007-10-20T09:38:00.000-07:00

I believe that accepting autistic people is simply the right thing to do. It's not something you should consider doing just to make a child "get better" or any medicalized thing of that nature. That said, in a prior discussion the question came up as to whether acceptance might be beneficial to autistic children, so I decided to research it. There is not a lot of autism-specific research on the issue, but I did find there is a large body of research on acceptance and its effects on general population children as well as disabled children.

In the general population it has been found that parental acceptance correlates with better academic performance (Hahn, 1980), optimal self-concept development (Litovsky & Dusek, 1985), self-worth and self-competence (Ohannessian et al., 1998), etc. Self-worth has been found to correlate to perceived competence in domains important to parents (Killeen, 1993).

In children with "disruptive behavior disorders", parent-child attachment has been found to correlate with lower levels of aggression and social stress (Ooi, 2006). The self-esteem of children with learning disabilities have been found to be associated with parental acceptance (Morvitz & Motta, 1992).

On a related note, I've learned there's something called Acceptance and Commitment Therapy (ACT). In randomized trials it has been found to be as effective as the dominant form of psychotherapy, CBT, in the treatment of depression, anxiety and problems of that nature. Its mechanism of action appears to be different to that of CBT (Forman et al., 2007). There has been a trial of this type of therapy with parents of autistic children (Blackledge, 2006), but it should be stressed this trial was not randomized. There is also a non-randomized trial of this therapy as a treatment of Social Anxiety Disorder (Dalrymple & Herbert, 2007).

I don't have any comments beyond that. I just wanted to report what I found, but I'd appreciate any personal experiences, or insight from readers with expertise on the topic.

Open Thread

2007-10-18T09:30:00.000-07:00

Discuss anything that's on your mind, or post information of interest.

Raun Kaufman: Completely Recovered or Success Story?

2007-10-16T08:56:00.000-07:00

I've come across some information which leads me to put Raun Kaufman on the spot. Apparently he was diagnosed at the age of 18 months. That was over 30 years ago. Isn't that rather early a diagnosis for the time? By the age of 5 he's said to have "emerged" from autism. We're in 2007 now; early diagnoses are quite common and have been studied. It turns out that it's not that unusual for children to lose age 2 diagnoses, and there's little data regarding what predicts this. Anywhere from 12% to 19% of children diagnosed at age 2 will be found to not meet ASD criteria some years later (Turner et al., 2006; Kleinman et al., 2007). Sorry Raun, but those are the facts.

But maybe he didn't lose his label at 5. He simply "emerged." Still, Raun Kaufman is unusual and generates interest because he's the only adult (that I know of) who inequivocally states he's completely recovered from autism. I've encountered adults who say they might be slightly off the spectrum now, but they tend to be ambiguous about it.

How does Raun Kaufman differ from any of Kanner's "success stories" as described in Kanner et al. (1972)? It can't be that they didn't graduate from college or didn't have jobs.

Does it matter whether we call it "complete recovery" or "success story"? I think it matters a little. Losing membership in a group is different to being a successful member of the group. For example, it will probably be quite unusual if a woman becomes president of the US. But I don't think Hilary Clinton will stop being a woman if she achieves this.

Don't get me wrong. I think it is important for science to study what might have helped Raun have a successful outcome. Some clues are already there.

Although advised to institutionalize Raun, his parents, authors/teachers Samahria and Barry Neil Kaufman, instead created an innovative home-based, child-centered program in an effort to reach their son.

I'm convinced this sort of recommendation Raun's parents got is a major cause of poor adult outcomes reported in the literature. It's a self-fulfilling prophecy if you will. I'd like to see stronger warnings against early institutionalization. I believe this is more important than saying "give me money to recover your child."

I don't doubt the parallel play, joint attention, presuming competence, and acceptance (even fake acceptance) helped somewhat.

However, I don't like a lot of the discourse used by the Autism Treatment Centers of America. It's medicalized. It claims to give "hope" but instead misleads with erroneous information, such as suggesting that poor outcomes in autism are basically a given under normal circumstances.

Gallup & Yazbak: "Prevalence is 1 in 67"

2007-10-15T08:02:00.000-07:00

Raymond W. Gallup & F. Edward Yazbak have posted an analysis titled "When 1 in 150 is really 1 in 67." As you can imagine, they did not survey children in order to arrive at a new prevalence number of 1 in 67. They estimated it as follows.

The CDC has reported that the prevalence of autism among children born in 1994 is 1 in 150.
The administrative prevalence of autism among 6 year olds, as reported in IDEA, has increased 124% (factor of 2.24) from 2000 to 2006.
Therefore, they argue, the prevalence reported by the CDC must actually be 1 in 67 for children born in 2000, if adjusted accordingly.

Anyone see why this methodology does not hold?

For this analysis to hold, IDEA ascertainment would have to be at least roughly equivalent to CDC ascertainment. It's not a matter of "not believing the statistics collected by the U.S. department of education" as the authors contend. I believe them. I just don't think they are counting all autistic children, by far. But I do think they are getting better at ascertaining autism.

In 2000, the prevalence of IDEA autism among 6 year olds was 0.23% (source, table B2C). This is 2.89 times less than the CDC prevalence reported for children born in 1994. So for every 3 autistic children, IDEA missed 2. Of course, it's unlikely they missed most of them. They were probably served under other categories, as demonstrated by Shattuck (2006).

Could it also be that the IDEA category can be changed after the age of 6? (Note that in IDEA a child is in one category or another, not multiple ones simultaneously.) The IDEA prevalence of autism among 11 year olds in 2005 was 0.47% (same table), more than double that of 6 year olds in 2000. Obviously, half of the autistic 11 year olds, as recognized in 2005, must have been served in other categories in 2000.

So Gallup & Yazbak's analysis is flawed in regards to using the IDEA prevalence of 6 year olds in 2000 to extrapolate the results of a survey done recently on children who are now older. That's just a demonstrable flaw of the analysis. I don't believe the analysis methodology is valid either way.

Kev: Any way you may reconsider?

2007-10-14T11:19:00.000-07:00

Briefly, John Best Jr. has once again made an appalling impersonation of Kev's daughter (won't link to it) and of course, this has made Kev very upset. I know I would be. Kev says he's decided to stop blogging about autism in order to prevent his family from being the victims of John's immature and reprehensible behavior.

John makes Jerry Kartzinel look like a tolerant angel from heaven.

This is one of the reasons many of us blog anonymously or pseudonymously. (I'd link to other examples, but they would be in Kev's blog.) We have to be careful to even use our kids' real names in this sort of environment.

Making comparisons is probably not nice, but has this sort of thing ever been done to anyone in the EOHarm mailing list, for example? Would they happen to care at all about the behavior of one of their own?

Kev's blog (LB/RB) is perhaps the most popular autism blog in the web. It's very neurodiversity-friendly, and it discusses science in a rational manner, without the usual nonsense you see elsewhere. Losing LB/RB would be a major loss to the autism and autistic communities.

I think it would be awful if John is allowed to win this time. I realize Kev has to think about his family first. I wish there's a way he might reconsider. I'd urge readers to send a message of support to kevleitch at gmail dot com.

And John, I know you're reading. Let me appeal to your better nature, if there is such a thing in you. Retract those posts.

How Did Neurodiversity Win You Over?

2007-10-13T17:07:00.000-07:00

Quick informal survey: How did neurodiversity/acceptance win you over? This question goes for parents, those on the spectrum and anyone else who sympathizes with the philosophy.

Clearly, we didn't all start out embracing the concept or even being aware of it. I think this is true of almost all parents, even those parents like me who are themselves on the spectrum.

For me, at first, I think it was interacting with others on the spectrum and reading what they had to say, and even arguing with them. Much has happened since then, and my views have continued to evolve, but in the very beginning, I think that was key.

In my view, those in the neurodiversity movement tend to be flexible and critical thinkers, who are ready to revise their views in light of new indisputable information. This is a generalization, of course, but a strangely consistent one if you consider the polarization of skeptical thinkers vs. anecdotal thinkers in the autism community. I can't explain it.

It also appears to be the case that parents go from being curebies to embracing acceptance, but I've not once heard of a parent going the other way.

A Dose Of Real Autism Reality

2007-10-10T06:52:00.000-07:00

It seems to me that many parents (and even some professionals) in the autism community are unaware of fundamental facts about autism. I cannot help but arrive at this conclusion when I witness factual statements such as "there is no cure for autism" twisted into mistaken or unsubstantiated statements like the following.

The bastards are telling us that our kids will never get better!
Loss of label in autism is so miraculous that some innovative cure must have made little Timmi recover.
My child would not have skills X, Y, and Z if it weren't for [insert woo].
My 2 year-old child will never be able to do X.
My child will necessarily end up in an institution.

When we deal with flawed premises of this nature, rational discussion obviously becomes very difficult. That's why I want to make this post a sort of all-purpose summary of what the science tells us in regards to developmental progress, adult outcomes, loss of label in childhood, speech, institutionalization, and shifts in parental beliefs. I will discuss factors that seem to be predictive of outcome, but don't expect any magical formulas or guarantees from me. I can only speak of possibilities and I will only report what the data tells me. I will not sugar-coat what the research says.

As always, if you find that I failed to include some relevant data, or if something I said is inaccurate, feel free to let me know in the comments section.

Developmental Progress

Recently there was some publicity sorrounding a study by Paul Shattuck which found that autistics "get better" in average (source). This type of finding is not new, however.

Even early papers by Kanner show that autistic children tend to make substantial developmental progress as time goes by. There are several other published findings as well.

Findings from Harris et al. (1991), for example, "support the notion that young children with autism can make very significant developmental gains."

Tager-Flusberg et al. (1990) found that language acquisition in most autistic children followed the same developmental path as that found in children with Down Syndrome, and that of normal children as reported in the literature.

Harris et al. (1990) found that all autistic children in the study made normative progress in their rate of language development.

Piven et al. (1996) reported "significant change over time in autistic behaviors, generally in the direction of improvement" in high-IQ autistic adolescents.

Charman et al. (2004) found that autistic children had "encouraging developmental progress" over a 1-year period, although no change in "symptom severity as measured by the Social Communication Questionnaire."

Of course, there is such a thing as "regression" and there are developmental plateaus, but these are the exception rather than the norm, and they will not necessarily persist indefinitely.

Adult Outcomes

The first adult outcomes reported in the literature can be found in Kanner (1971) and Kanner et al. (1972). The 1972 paper details the case histories of 11 (actually 13) of 96 autistic adults Kanner considered "success stories." The paper contains some discussion of predictive factors for a successful outcome, such as the presence of some expressive language before the age of 5, and effort spent to "compensate for the lack of inherent sociability" when the individuals were in their middle to late teens.

The only environmental factor Kanner found significant was a total lack of institutionalization. I see this as a key factor, and it would be difficult to do it justice with a risk ratio. Lack of institutionalization was practically a requirement for a successful outcome. On the other hand, from Kanner's 1971 paper it would seem that institutionalization from an early age practically ensured a "dismal" outcome.

There have been other adult outcome studies since then, with varying results. For example, Howlin et al. (2004) found that 12% of adults had "very good outcome" and another 10% "good outcome", with the majority (58%) having "poor" or "very poor" outcome. Billstedt et al. (2005) found that autistics diagnosed in 60s, 70s and 80s had worse outcome than previously reported, with only 3% achieving independence, and 78% having a "poor outcome."

A recent adult outcome study reports that half of the autistic adults had a good or fair outcome, and 46% had poor outcomes (Eaves & Ho, 2007). The authors indicate that "current young people had more opportunities" and thus better outcomes were expected. I would venture a guess that one of those opportunities was the opportunity not to be institutionalized.

Some factors in outcome, such as baseline IQ or symptom severity, are usually discussed in these types of outcome studies.

Szatmari et al. (1989) studied the outcome of "non-retarded" autistic adults, and found that 4 of 16 (25%), a "surprising number", had a very good outcome and could be considered "recovered." An interesting finding from this study was that symptom severity was not predictive of outcome.

Outcome studies generally use various standard measures to determine if an outcome is good or poor. Ruble & Dalrymple (1996) questions the traditional view of outcome and suggests that some good outcomes are sometimes "invisible" to traditional measures. It also found that the parents of autistic adults who were doing well had pushed for integration and mainstreaming.

You might have heard neurodiversity advocates promote the notion that "presuming competence" is beneficial. There is actually some evidentiary support for this if you look at Donohue et al. (2000), which is not autism specific, but is referred by Ivey (2007), a survey of teacher expectations of outcome in autism. The following is quoted from its summary.

Research shows that when the significant people in a child’s life do not believe that he or she has capability to achieve an outcome, it is unlikely that the outcome will be realized. For example, if a teacher feels that a student has social obstacles, then their perceptions may increase the undesirable behavior and the student may see him or herself in that light (Donohue, Weinstein, Cowan, & Cowan, 2000).

The environmental factor that seems to be of interest to medical researchers is, of course, treatment. Unfortunately, there are no adult outcome studies that could tell us if modern treatments, particulary early intensive behavioral intervention (EIBI), are predictive of a good outcome. The evidence is rather ambiguous. To take an example, you have Howlin (1997) which tells us that "appropriately structured programmes for education and management in the early years can play a significant role in enhancing functioning in later life." But later the same author, in Howlin (2003), states that "despite claims to the contrary, there is little evidence that very early, intensive interventions can significantly alter the long-term course of the disorder." It would be of interest to know, for example, how the experimental group of Lovaas (1987) is doing, now in their 20s and 30s (even if the group was not representative) but unfortunately no one has taken the time to document these adult outcomes in the peer-reviewed literature thus far.

Loss of Label in Childhood

It seems obvious that the earlier the diagnosis, the harder it is to predict if the diagnosis will hold some years later. There are some studies that support this view, such as Turner et al. (2006) which found that only 88% of children with autism or PDD-NOS diagnoses at age 2 were found to be in the spectrum at age 9. See also Sutera et al. (2006) and Charman et al. (2005).

While loss of label in childhood is rare, it's obviously not as miraculous as some claim. A gap in the science is that nothing is known about the adult outcomes of autistic children who lose their label at a young age.

Speech Development

Turner et al. (2006) tells us that 88% of children diagnosed with autism or PDD-NOS at age 2 could demonstrate some functional language at age 9. However, only 32% were able to engage in a conversation.

Kobayashi & Murata (1998) found that 48% of a sample of 187 autistic adults had good or very good speech.

Speech delay has been found to be non-significant in autistic children with normal intelligence, i.e. their outcome appears to be no different to those with a diagnosis of Asperger's (Calhoun, 2001).

Institutionalization

It is important to realize that institutionalization of developmentally disabled persons has been in decline in recent decades, probably in large part due to the deinstitutionalization movement.

Krauss et al. (2005) reports that 63% of autistic adults did not live at home with their parents. Of those, the majority (73%) lived in a community residential programme. About 17% had a semi-independent living arrangement. Only 3% lived in an institutional setting.

This is consistent with the latest data from California DDS, where we find that at least 66% of adults in the system live at home or independently, and no more than 4% live in institutional care facilities (source).

Currently about 10 in 10,000 persons in California are registered with CDDS and do not live at home or independently. There is a slight downward trend in this proportion. I would estimate that autistic children diagnosed today in California have a relatively small chance (5-10%) of not living at home or independently as adults, due to the trend in institutionalization and the broadening of the spectrum. To put it in perspective, I think they have better odds of "recovering" than of being institutionalized.

Parental Beliefs

According to King et al. (2006), expected changes in parental worldviews over time include positive adaptations concerning views on life and disability, "and an appreciation of the positive contributions made by children to family members and society as a whole." I suspect not all parents undergo these worldview adaptations, however. Some will probably oppose acceptance to the bitter end.

More evidence that the impact of biomed, if any, has been limited

2007-10-07T15:03:00.000-07:00

[ERRATA 10/13/2007: Based on commenter feedback, I have changed the title from the strongly worded "More Evidence Of The General Ineffectiveness of Biomed". A few words have been inserted in the post in relation to this clarification. The term "high functioning" is sometimes used to indicate that a child would no longer be eligible for developmental disability services.]

What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing broad results hold water. I think administrative data is adequate to test this belief, as I will explain.

So what is it that biomed peddlers are generally claiming? First, they are telling us that biomed is recovering autistic children by the "thousands." They also tell us that those of us who do not experiment with our children using biomed will soon repent, that we're guilty of child abuse, and so forth. They've been saying that for years actually.

Regular troll to the LB/RB blog, 666sigma, tells us that most of the autistic children where he lives have pretty much recovered, and the ones who are now mainstreamed without autistic traits are precisely the ones who are doing biomed (source). Let's put aside for a moment 666sigma's confirmation bias, and consider what would happen if what he says is true.

Now, keep in mind that about 74% of autistic children in the US are currently subjected to alternative medicine (Hanson et al., 2007). If biomed were generally and broadly effective, it follows that a significant number of autistic children must constantly become high functioning, if not lose their labels altogether.

I think any such effect should show up in California data. Suppose a child is born in 2001, is diagnosed with autism in 2004, and enters the CDDS system then. Your average parent in the US will naturally at that point Google their way to the biomed treatments of vogue. I would assume that by 2006 the child should be expected to be high functioning or recovered, right? This means that the child would lose their CDDS eligibility and would no longer appear in the report. It's important to realize that the state of California is very much concerned with CDDS caseload growth, to the point that in August 2003 a law was enacted (CA AB1762, W&IC 4512) with the explicit purpose of supressing this growth (source). The law requires the applicant to have three life-functioning deficits instead of just one. In fact, 2003 and 2004 saw more autistic individuals dropped from the system than any year prior, at least since 1999 (source).

Note also that CDDS reports are generally on clients with active status, and losing eligibility causes someone's status to become 'Closed' (source).

Thanks to David Kirby, who brought it to my attention, I happen to have data on caseload by birth year cohort from CDDS, as reported every quarter. We can check what happens to the caseload of autistic children born in 2001, for example. I actually went and made a graph of caseload for birth years 1999 to 2004, as reported each June from 2002 to 2007.

This graph shows that with each year that passes, the number of autistic children receiving services from CDDS born in any year between 1999 and 2004 does not drop, but instead continues to increase. The following graph, which might be clearer, illustrates what has occurred to the caseload of children born in 1999 specifically.

From these data we can conclude that autistic children born in recent years in California are not dying in significant numbers, are not moving out of the state in significant numbers, and I would also assert they are not recovering in significant numbers. There are some limitations to the data. For example, it could be argued that increasing recognition of autism is so relentless that it overshadows any recoveries, particularly those that occur before the age of 5 or 6. The data also seems to suggest that no treatment is effective, but in fairness, 40-hour ABA is probably a rare treatment in practice.

In all honesty, though, what we're looking at is the reality that autistic children are not going anywhere. The vast majority will always be autistic. I cannot have respect for parents who delude themselves into thinking some hogwash will magically turn their autistic children into non-autistic ones based on just-so stories they read on the internet.

ThreeLac Or How Biomed Is Getting Out Of Hand

2007-10-03T08:21:00.000-07:00

ThreeLac is an alternative treatment for candida/yeast/fungal infections which seems to be receiving considerable attention as a biomed autism treatment thanks to Jenny McCarthy. I wouldn't be surprised if it soon overshadows other treatments currently in vogue, such as Chelation Therapy or Me-B12 injections.

ThreeLac is unproven, of course. There are no published studies on its effectiveness as it relates to any condition, never mind autism.

However, there is one "study" underway which purports to demonstrate its effectiveness as an autism treatment. I'm not going to link to its web page but it's easy to find if you're interested. It is not a controlled study, as you can imagine. It's reminiscent of the uncontrolled work Amy Holmes did in the early days of Chelation Therapy for autism. In any such uncontrolled "studies", you will find that the children "improve", some markedly. I would go as far as to say, frankly, that non-controlled treatment studies are worse than useless in autism for reasons that should be well known by now.

What caught my attention about the ThreeLack "study" was the "existing supplement routine prior to and during the study." It's jaw-dropping. The following is a selected list of existing supplements taken by some of the children in the study.

Child #2: Magnetic clay baths finished, transdermal DMPS – ongoing. Other supplements: H. Pheno, H Enzyme HN – Mult, H. Enzy – APF – gfcf, Zn monomethionine, Folic acid, Multicarotene, Co Q10, Black Currant, V E, Epson S cream, EFA, D Plex, B Complex, Eskimo oil, CLO flavored, Myelized A, PicMins, Custom amino acid base, LGS, 5-HTP, taurine, OPC – 100, Biotin-8, Sacro-B, L-carnitine. Parent's comments: "He likes to watch picture of books. His eye contact has improved. He sleeps 7-8 hours every day. He is gentle. He enjoys his life. He often smiles. So, we all enjoy peaceful life."

Child #3: No chelation listed. Other supplements: Carnosine, H. Pheno, H. Enzyme HN – Mult, H. Enzy – APF – gfcf, Zn monomethionine, Folic acid, Multi-Carotene, Co Q10, Black currant, V E, Epson S Cream, EFA, D Plex, B Complex, Eskimo oil, CLO, Myelized A, PicMins, Custom amino acid base, LGS, 5-HTP, taurine, OPC-100, Biotin – 8, L-Lysine. Parent's comments: "He can solve many questions of Science, Social Studies, Arithmetic, and Language. He likes to read Harry Potter. He is gentle."

Child #4: TD-DMPS finished June 2005. Other supplements: Ambrotrose, Arabinex, Ascorbic acid, Amino acid, Biotin, Black currant oil, calcium Citramate, Carnosine, Cod liver oil, Co-Enzyme Q10, DMG + Flonic acid, D Plex, EFA, Enzymes – NF, ZP, AFP, Eskimo 3 fish oil, Glutathione cream, Glutathione liquid, 5-HTP Tryptophan, L-Arginine, L-Carnitine, L-Glutamine, L-Tyrosine, Magnesium sulfate, Mercurious Virus, Monolaurin, Multi-carotene, N-Acetyl Cysteine, OPC-100, Pantethine, Pic-Mins, Pyridoxal 5 phosphate, RNA – Nerve Calm, RNA – Health Foundation, RNA – Stress Foundation, RNA – Mood Focus, Sac. Boullardii, Selenium, Transfer Factor, Vitamin A, Vitamin B-12, Vitamin B Complex, Vitamin C, Vitamin E, Zinc, Zinc Sulphate.

Child #5: DMSA, Clay baths, TD-DMPS, still in progress. Other supplements: Super Nu Thera, Vitamin C, TMG/Folinic Acid/B12, CoQ10, Amino Acids, Methylcobalamin shot, Enzymes, Glutathione, Milk Thistle, Cod Liver oil, Monolaurin, Pro-Bio Gold, Hemp oil, EP oil, Multi Mineral, Transfer Factor, Zinc. Parent's comments: "Improved computer skills, improved handwriting and spelling. Has mastered tying shoes on shoe board."

Child #7: TD DMPS, ongoing. Other supplements: Lipoceutical Glutathione, Multi-vitamin, Multi-mineral, Buffered Vitamin C, Zinc, Transfer Factor, Amino Acid blend, L-Carnitine, Taurine, MB12 shots & Folinic Acid, Cod Liver oil. Parent's comments: "Toilet training improved (B.M.'s are the best)."

Child #8: Magnetic Clay baths and Transdermal DMPS gel ongoing. Other supplements: Vitamin E w/Tocotrienols 400I.U., B-Complex #3 caps, Multi-Vitamin Pro-Support, Ascorbic Acid, Magnesium Malate, Zinc Monomethionine, Calcium Citramate, Pic-Mins (multi-minerals), Epsom Salt Cream, FlorVital Iron liquid, Cod Liver oil, CoQ10, BAM (Amino Acid base), L-Carnitine, Glycine, TMG w. Folinic acid & B12, L-Theanine, Melatonin, Sacro-B, O.P.C. (oligomeric Pranthocyanidin), Lipoceutical Glutithione, Methyl-B12 shots, Enzymes: No-Fenol, Zyme Prime, AFP Peptizyde. Parent's comments: "He is much better. Overall, a much calmer boy."

Child #9: Oral DMSA, two rounds only during study. Daily application of TTFD chelating cream. Other supplements: Essential fatty acids, Multi-vitamin, amino acids, Acetyl l-carnitine, Vitamin C, B6, Magnesium, Calcium, Vitamin E, Transfer Factors, Methylcobalamin injections, Glutathione lotion. Parent's comments: "She has improved well in areas of sociability and cognition. Sociability is 60% improved, irritability is 20% improved and academic is 60% improved."

Child #10: Oral DMSA, 3/2005 – present. Other supplements: Pic-Mins, zinc monomethionine, selenium picolinate, magnesium malate, N-acetyl cysteine, L-carnitine, OPC-100, carnosine, taurine, multicarotene, CoQ10, glycine, biotin, folinic acid, Kirkman Nu Thera Everyday Companion, Kirkman EFA, amino acid mix, B-complex, vitamin A, vitamin B6 (P5P), vitamin C, vitamin E, black currant oil, fish oil, cod liver oil, glutathione, B-12 injections, T.A.P.S. (liver support), TTFD.

Child #11: DMPS transdermal prior to starting ThreeLac and ended in May, 2005, changing to clay baths. Other supplements: Micel A drops, Wellness LipoCeutical Glutathione, Black Elderberry extract, Cod liver oil, Eskimo oil, Transfer Factor, NAC, Multiple vitamin Pro Support, Magnesium malate, Selenium, Zinc monomethionine, Pic-Mins, ASD-Plex, Nu-Thera Everyday Companion, Amino acids, H. No-Fenol, H. HN-Zyme Prime Multi, H. Enzyme AFP Peptizyde cfgf, Kirkman vitamin C candies, Balanced Omega combination, Black currant oil, Hydrosoluble CoQ-10, Multi-carotene, Vitamin E, Taurine, L-Carnitine, O.P.C., Biotin-8, B-Complex #3, Folinic acid, Empsom salt cream, Zinc Sulfate cream, Methyl-B12 shot, Melatonin. Parent's comments: "She was off ThreeLac and all supplements completely for 8 weeks, and her diarrhea (of > 1yr) never returned. She also showed no regression and her behavior is that of a recovered autistic child (no behavioral symptoms). She is now able to tolerate moderate amounts of sugar, and we just started her on 1 packet/day maintenance and the rest of her supplements ½ dose. I think she's completely normal except for needing to stay on the diet and supplements. She still has a bit of a speech delay, but improved so much that it doesn't get in her way of making friends. She's one of the friendliest kids in her class. If you were to observe the class and guess which one is autistic, you probably wouldn't guess (my daughter). She's 90% potty trained."

Child #12: TD-DMPS ongoing. Other supplements: Custom amino acid, Carnosine, Buffered C, DMG w/ B-12 + folinic acid, Pic-Mins, OPC-100, Magnesium Malate, Transfer Factor, Co-Q10, LGS, Selenium Picolinate, Black Currant Oil, Folinic Acid, Sacro-B, Calcium Citramate, Vitamin E, B-Complex, Biotin-8, Zinc Monomethionine, Glycine, Micelized Vitamin A, Cod Liver Oil, Omega Brite, RNA, GABA, Pantethine, LipoCeutical Glutathione, TTFD cream, Glutathione cream, Epsom salts cream and baths. Parent's comments: "His imagination skills have improved. The ThreeLac has made a huge improvement with his stools. Mouthing has improved 100% and lining up objects has improved 50%."

Child #13: TD-DMPS since 12/6/2004, ongoing. Other supplements: Transfer Factor Advanced, Trace Mins, Pic Mins, Zinc Picolinate, Vit E with Tocotrienols, Evening Primrose oil, Black Currant, CoQ-10, Cod liver oil, Eskimo oil, Magnesium Malate, L-Tyrosine, D-Plex, Customized Amino Acids, Selenium, Biotin-8, B Complex #3, MB-12, Melatonin, 5HTP, GABA, Buffered C Powder, Calcium C, Taurine, Multi Vit Pro Support. Parent's comments: "Fine motor skills 50% improved. He is almost 100% toilet trained (90% improved)."

Child #16: Clay baths – ongoing. Other supplements: AFP-Peptizyde, B-12 shot, Black Currant Oil, Carnosine, Cod Liver Oil, Custom Amino Acid Base, DMG w/Folinic Acid, D-Plex, EFA, Epsom S Cream, Eskimo-3 Oil, Hydrosoluble CoQ-10, L-Carnitine, L-Glutamine, Lipoceutical Glutathinoe, L-Methionine, Lycopene, Magnesium Malate, Micel-A, NAC N-Acetyl-Cysteine, No Fenol, Nu-Thera/Everyday Companion, Pantethine, Pic-Mins, Super Nu-Thera, Taurine, Vital-10, Vitamin E w/ Tocotrienols, Zinc, Zinc Monomethionine, Zyme Prime. Parent's comments: "He went from being mostly non-verbal to a "chatter box." He enjoys talking and singing. He has been diagnosed with apraxia of speech and as a result it's not always easy to understand what he's saying...but it's a huge improvement over where he was at when we started."

Child #17: Clay baths – ongoing. Other supplements: 5-HTP, AFP-Peptizyde, B-12 shot, B-Complex w/ CoEnzymes Pro, Black Currant Oil, Black Elderberry Extract, Cod Liver Oil, DMG w/ Folinic Acid, Epsom S Cream, Eskimo-2 Oil, Floradix, Glycine, Hydrosoluble CoQ-10, L-Carnitine, L-Glutamine, Lipoceutical Glutathione, L-Phenylalanine, Lycopene, Magnesium Malate, Melatonin, Micel-A, NAC N-Acetyl-Cysteine, No Fenol, Nu-Thera/Everyday Companion, O.P.C.-100, Pantethine, Pic-Mins, Super Nu-Thera, Taurine, Vital-10, Vitamin E w/ Tocotrienols, Zinc Monomethionine, Zyme Prime. Parent's comments: "She has always been a "chatter box." We have seen amazing changes in her as well. On her annual IQ tests she scored 39 points higher than last year... and 49 points on the other IQ test. If she was reevaluated today, the psychologist expects that she would lose her diagnosis."

Damn. I hope the reason most children in the study take so many supplements is because the study self-selects for curebie parents. Additionally, I hope these kids make it through all that.

This reminds me of a supplement soup JB Handley was giving his kid, but I couldn't find the link to that.

Let's Help Out DAN!

2007-10-02T09:12:00.000-07:00

It appears that Defeat Autism Now! can no longer use the DAN! acronym after a cease and desist claim issued by the Divers Alert Network (EOHarm message #65738.) Over at EOHarm they are saying that it's because of DAN!'s "success" (sure) but it's really because both organizations have a connection to HBOT.

That's too bad, isn't it? I thought it would be nice if we could help out DAN! get a new acronym for their organization. You know, something that is not too disimilar to the old DAN! acronym. Here are my suggestions.

DAMN!
Defeating Autism, Maybe, Not sure!
DKAM!
David Kirby, Arithmetic Master!
NAD!
Now Against Diversity!

Any other ideas?

Does Data Support Claim That Developmental Disabilities Will "Destroy The US"?

2007-10-01T07:36:00.000-07:00

[ERRATA 11/24/2007: The year 2006 was mistakenly referred to as 1996 in a couple places.]

I presume most of my readers are pretty familiar with this sort of claim by now. For example, column writer Evelyn Pringle has proclaimed autism to be the "worst welfare disater in history" and further claims that "as more autistic children reach late adolescence, the need for out-of-home residential services is beginning to have a heavy impact on state budgets" (source.) When Mark Geier was interviewed by the conspiracy talk radio program Radio Liberty, he stated that if "we end up with one in six of them having brain damage, that’s fifty million Americans, we’re not going to be the number one country in the world anymore." He further suggested that "if we are not careful it’s going to destroy the United States" (source.)

These scare tactics are, of course, unsubstantiated. Note that it's not sufficient to point to the increasing administrative prevalence of autism, considering the very distinct possibility of diagnostic substitution and increasing recognition of various conditions. It's also not sufficient to point to the high costs of ABA therapy, for example, for the same reasons.

To determine if there is any merit to these claims, I think we need to look at some basic metrics, and that's what I intend to do in this post. I will use data going back to 1992 which may be requested from California DDS (CDDS). California population data is obtained from the California Department of Health Services.

Let us first look at trends in cognitive disability as a whole, by analyzing data on an aggregation of moderate, severe and profound mental retardation in the state of California as registered by CDDS. Mental retardation (MR) in CDDS is more of an assessment than a diagnosis. That is, all CDDS clients, including autistic clients, are assigned to a category such as "No MR", "Profound MR", "Unknown MR", etc. This categorization is presumably based on IQ testing. I am choosing moderate, severe and profound MR because I believe these categories would be "hard to miss" if you will, and it is unlikely that there's a recent trend of parents deciding to pursue CDDS services for these conditions where they would not have in the past. In other words, many of the caveats that would apply to the autism classification probably do not apply to these categories.

The following is a graph of the prevalence change in moderate, severe and profound MR from 1992 to 2006, as reported in July of each year.

As we can see, administrative prevalence of moderate, severe and profound mental retardation has been stable since 1992. The aggregated prevalence was 15.4/10,000 in 1992 and 15.5/10,000 in 2006.

Let us now look at a direct measure of residential costs. The following is a graph of the total number of persons, per 10,000 population, registered with CDDS, who do not live either at home (being cared for by a parent or guardian) or independently. This would include residential options such as group homes, as well as institutional care facilities, nursing facilities, etc.

As readers can see, there is actually a slight downward trend in the number of developmentally disabled persons who do not live at home or independently. The prevalence of this type of living arrangement was 10.7/10,000 in 1992 and 10.3/10,000 in 2006. I think we can all agree this is a positive trend.

Conclusion

California data does not support unsubstantiated claims by Evelyn Pringle, Mark Geier and others to the effect that "epidemics" of developmental disabilities will result in either an unmanageable fiscal burden or the destruction of the United States.

The Epidemic Of Autism... Among 18-21 Year Olds

2007-09-29T14:41:00.000-07:00

I thought it would be interesting to see what has been happening to the California DDS 18-21 cohort since 1995. So I put it into a graph.

Over the last 12 years this caseload has increased by a factor of 4.4 (or 440%). Some people might call this an epidemic. It's also interesting that in the last few years, annual caseload growth in the 18-21 cohort is roughly 20% (or about 20 times what population growth is in the state.) Contrast with the 3-5 cohort which lately has had an annual caseload growth of about 10%.

Really late onset autism anyone?

Sallie Bernard and a Novel Form of Sour Grapes

2007-09-27T07:11:00.000-07:00

Orac and Isles have already commented on the new thimerosal study from the CDC. I just wanted to add a few things.

The study, first of all, is methodologically impressive in my view. For example, they didn't look at existing diagnoses, but they actually went and evaluated the children. This in itself takes care of some confounds Verstraeten et al. likely suffered from. The new study is not perfect by any means, but anyone would be hard pressed to do any better. The confounds that remain are non-obvious and their significance unclear. This is not at all like Generation Rescue's survey, for example, where it's trivial to identify some major and obvious confounds.

It would seem that the conclusions of the CDC study are counter-intuitive to some people. After all, the study did find some statistically significant effects, and statistical significance is statistical significance. David Kirby, for instance, seems to be having a lot of trouble figuring this out. The key point to understand is that this study is not your ordinary ecological survey where they give you one or two risk ratios (RRs) and their confidence intervals. If you look at a single RR in isolation, you can be sure (barring any flaws and confounds) that there's only a 5% chance that the actual RR is outside the confidence interval. But suppose you are presented with 100 studies, each with one RR. Obviously, you should expect that, by mere chance, around 5 of those studies will be wrong; i.e. they will have actual RRs that are outside their corresponding confidence intervals.

The CDC study looked at 42 different outcomes, and determined multiple confidence intervals in each case, since different levels of exposure were tested. In total, I understand there were over 300 confidence intervals. Consequently, assuming the null hypothesis is correct, you should expect that an RR of 1.0 will be outside the 95% confidence interval in over 15 measures. What the study found was that in 12 measures there was an apparent protective factor, and in 8 measures there was an apparent risk factor. This is completely consistent with the null hypothesis. Therefore, the conclusion of the study, namely that the results of the same do not support a causal association between thimerosal-containing vaccines and neurological outcomes, is absolutely the correct conclusion.

Let's now discuss Sallie Bernard. The CDC apparently went out of its way to make this study as transparent as possible and to, frankly, appease the mercury militia (which bills itself as the "autism community" even though there's absolutely no evidence they are actually representative of the autism community.) Ms. Bernard was given a chance to participate in all stages of the study as a consultant, but when the results came in and they were not what she expected, Ms. Bernard decided to withdraw her support. That's not all. She (or SafeMinds) fired off and email/press-release titled as follows.

VACCINE STUDY IN NEW ENGLAND JOURNAL OF MEDICINE WRONG IN CONCLUDING MERCURY EXPOSURES ARE HARMLESS, STATES SAFEMINDS

(EOHarm message #65356)

Is that what the paper said? That mercury exposures are harmless? That would be wrong ane misleading. Let me check.

Our study does not support a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years.

Wow. That's quite different to "mercury exposures are harmless." Who would say "mercury exposures are harmless" anyway? If you were to ingest, say, 1 gram of mercury, you would not become autistic, but you would easily end up at the hospital or dead. Certain doses of mercury are not harmless by any means.

Clearly, the CDC study has been misrepresented by SafeMinds. Is that SafeMinds statement an intellectually honest one? Ms. Bernard?

Ahmadinejad: "No homosexuals in Iran"

2007-09-25T07:03:00.000-07:00

As widely reported, the president of Iran, Ahmadinejad, has stated that homosexuals do not exist in his country. This doesn't really have to do with autism, but I happen to have researched the history of homosexuality, which went from being criminalized to being a disease and finally depathologized in 1973 when it was removed from the DSM-II. There's something I once read on the topic which probably explains Ahmadinejad's remark.

Evidently, homosexuals exist in Iran, probably at about the same rate as they are found to exist in the West (which BTW is not the 10% usually cited.) However, I do not doubt that homosexuals are a "hidden horde" in Iran, largely unseen, if you will. They have to hide, and the vast majority of Iranians could easily be unaware of their existence, except when they are reported by the media.

You see, homosexuality is criminalized in Iran (source 1, source 2).

Let's find out what it was like in the West when homosexuality was criminalized. The following is a selection of passages about a sodomy trial taken from The Medical Construction of Homosexuality and its Relation to the Law in Ninteenth-Centry England.

Mr Archibald thought it "fortunate" that "there is little learning or knowledge upon this subject in this country; there are other countries in which I am told learned treatises are written as to the appearance to be expected in such cases. Fortunately Doctors in England know very little about these matters". Mr Archibald could not have made a better summary of the position of forensic knowledge about sodomy and about homosexual practices... Gibson also noted that this was an "uncommon condition so far as my experience goes". Gibson had read the two leading Continental authorities on sodomy, August Tardieu and Johann Casper, a fact used by the court to establish a doctor's expertise in detecting sodomical practices... Lord Chief Justice Cockburn brought to the court's attention that "although this gentleman has not seen an instance of the effect produced by such a crime, yet if his general anatomical and surgical knowledge enables him to form an opinion, and he is able to say that the result of certain acts must be to produce such an effect, that would be legitimate evidence"... This establishment of ignorance amongst medical practitioners concerning knowledge about sodomy was to become crucial for the conclusion that sodomy did not exist in England, for unlike their Continental colleagues, credible and respectable English doctors at this trial (not Paul) were on the whole unable to tell if it had occurred or not.

If a survey of homosexuality were to be done in Iran, my bet is that the results would indicate there is close to 0% homosexuality in that country. Nevertheless, whether recognized rates of homosexuality in the West are 40-fold or 6000% higher than those of Iran, that does not prove homosexuality is biologically more common in the West, of course. Someone such as David Kirby could very well disagree with that logic, though.

Thank You Jenny McCarthy... For The Extra Traffic

2007-09-24T10:39:00.001-07:00

Ever since the McCarthy circus came into town I have seen a tremendous surge of traffic to this blog, primarily through my Jenny McCarthy post. After the initial spike, traffic is stable at about twice the usual number of unique visitors. The following are some of the search phrases that are sending people here.

indigomoms.com jenny mccarthy indigo jenny mccarthy ex husband jenny mccarthy divorce reasons crystal children and autism link jenny mccarthy archangel michael evan is a 'crystal child,' and she herself is an 'adult indigo.' were any indigo children born in 1969 jenny mccarthy, what medication her child was on indigo or crystal autism exelant model girles

There are also searches for something called Threelack. It's apparently "alternative medicine" for colon cleansing, no doubt unproven.

threelac and autism jenny mccarthy threelac

There are some things I'm glad people are finding information about in this blog.

monavie and autism autism, facts and false autism and acupuncture what are the effects of autism autism detox thermisal vaccine teenagers undiagnosed with autism exorcism treatment autism chelation natural children eugenics for kids foot detox cultural construct lynn redwood autism statistics graph annual autism and telepathy marrying someone with aspergers genetic screening is wrong michael menkin

Anyway, I'd really like to thank Jenny McCarthy for causing more people to be aware of some of the issues discussed in this blog. I no doubt speak for Kev and others when I say this. It's possible Jenny McCarthy unintentionally did something to actually help autistics, namely me.

Take a Guess

2007-09-23T15:54:00.000-07:00

Check out these descriptions of several individuals. Who would you guess they are? Are they well adjusted neurotypicals? Are they perhaps some quirky persons pretending to be "Aspies" for some nefarious reason? (The bastards!) Are they autistics who emerged thanks to early and intensive behavioral intervention?

The answer will be posted later in the comments section.

At 12 years of age, he was at the top of his class in the sixth grade... Thomas' marks were excellent. He spent one term each in the school's athletic association, art club, and newspaper, and helped the librarian after school. He also took on a central part in a demonstration during a folk dance. Teachers liked him because of his good academic performance... Thomas owns a house which he bought several years ago, drives his own car, and plays the piano and tape recorder when at home....

Sally had the ambition to go to college but added: "I may be hitching my wagon to a star." ... She expressed concern about her brother who was expelled from school because of drinking and misconduct and had a job at a gasoline station. Sally called him "a strong victim of adolescence — he needs real psychiatric help." ... After finishing high school, Sally was successfully enrolled in a woman's college, graduating with a B average...

For the last few years, he has been working at a government agricultural research station in a "blue collar capacity." Edward does not like this too well preferring to associate with "educated people." He has his own apartment and entertains himself with his Hi-fi set. He has bought a car with money that he has saved. He enjoys an active social life, belonging to hiking clubs and he has led hikes. His knowledge of plants and wild life brings him respect. He has begun to date girls. He comes home on weekends when he has time, and he is very welcome.

Clarence graduated from high school in June, [year], with excellent marks and superior achievement test scores. After spending the summer with his parents, he was admitted to a college in Illinois, where he received his B.A. degree in [year]. While there, he "socialized" with a girl for a while. Going then to a college in Massachusetts on a scholarship, he felt isolated, and went home to write his thesis. After obtaining his Master's Degree in economics, he studied accounting at his home state university. Clarence got a job with the state planning office and promptly decided to study planning; he did everything required for another Master's Degree except for the thesis... Although he dated a girl, she "broke off" after about nine months. Clarence feels that he ought to get married but that he "can't waste money on a girl who isn't serious." He likes driving a car and, as a hobby, collects time tables to maintain his interest in trains.

On June 29, [year], at 19 years of age, he entered the armed services. Upon completion of basic training, he was assigned to one of the intelligence services, received a top security clearance, took courses until December 6, [year] (the nature of which he could not disclose because they were of a "highly confidential nature"), and received an honorable discharge on January 18, [year]. Then follows a list of various jobs held in California and later in Pennsylvania, (six altogether) mostly as a "general office worker"; at present he is "chief inventory controller in a Motion Picture Laboratory" where he has received "several healthy pay increases." After drifting around, he feels that "perhaps at last, I have found a place worthy of my talent for settling down in." All six jobs were described in great detail, giving dates, description of responsibilities, names and telephone numbers of supervisors, and reasons for leaving the jobs. Generally speaking, "I have never been dismissed from any place of employment because of any working habits or lack of working habits." ... "I am in excellent health with no history of any severe illnesses or injuries. I have an automobile and a permanent residence. I am also draft exempt and have no criminal record of any kind."

George's mother took him out of school when he was in the eleventh grade so that he could concentrate on music. He had played violin in a number of youth orchestras and took courses at a prominent Conservatory. Concerned about not getting a high school diploma, George has, in recent years, spent much of his time subscribing to correspondence courses. He is especially interested in languages, having learned Spanish in school, teaching himself French, and having "a working knowledge" of Italian. At present George is employed as a page in a library and is also in charge of mailing books (mostly to foreign countries).

Since June [year], he has worked at a small restaurant as a dishwasher and bus boy... He seems to enjoy his work, has pleased his employers, and has never missed a day. He is a handsome young man, takes complete care of himself and of his room, and is neat and clean at all times. There are no behavior problems. He helps with the housework and takes care of the yard, including complete care of the power mower.

He hates clothes, drives a car, does best if not pressured and helped his father in the drug store... His chief interest is the streetcar museum. He is a member of a club that goes there on Sundays, laying track, painting cars, etc. They take trips. He used to like history, is up on world politics, and reads the newspapers.

When tested at 16 years, he was found to have a full scale WISC IQ of 118 (verbal 126 and performance 104). His arithmetic score was at the ceiling with quick answers on the tests, and comprehension, similarities and rote memory were rated as being of high average... At 23 years of age, Fred is doing well at a university where he has a B plus average and is gifted in mathematics. He has adjusted well in college life and his schoolmates respect his academic prowess... Fred drives a car skillfully, with full knowledge of all the parts, and in his spare time has done some composing and built a telescope.

Since receiving his A.B. degree in [year], he has worked in the local bank as a teller. He is satisfied to remain a teller, having no real desire for promotion. He meets the public there real well. His chief hobby is golf, playing four or five times a week at the local country club. While he is no pro, he has six trophies won in local competition. . . . Other interests are Kiwanis Club (served as president one term), Jaycees, Investment Club, Secretary of Presbyterian Sunday School. He is dependable, accurate, shows originality in editing the Jaycee program information, is even-tempered but has a mind of his own.... He owns his second car, likes his independence. His room includes his own TV, record player, and many books. In College his major was French and he showed a particular aptitude for languages. Don is a fair bridge player but never initiates a game.

Since November 25, [year], he has been working in the office of the National Air Pollution Administration (HEW) every day, and all day." A letter from the Acting Director, dated April 29, [year], says, "Creighton is an outstanding employee by any standard. Outstanding to me means dependability, reliability, thoroughness, and thoughtfulness toward fellow workers. In each case Creighton is notable."

More on What Institutionalization Does To Autistics

2007-09-22T16:29:00.001-07:00

This is not a pleasant subject to write about, but I think someone needs to do it. If I try to search for formal data about it on Google, I find my own prior post on it where I quote Kanner as he notes a very consistent lack of institutionalization in autistic adults who were doing particularly well in their 20s and 30s. I also find a comment by Michelle Dawson (she has obviously already studied what institutionalization can do to autistics), plus a comment on Autism Diva's blog about Alfred N's fate. That's about it.

The more recent outcome studies, for whatever reason, also do not seem to explore the effects of institutionalization on outcome, as far as I'm aware.

The following is from Kanner (1971), a follow-up study on 11 autistic children originally reported by Leo Kanner in 1943.

Richard M., Barbara K., Virginia S., and Charles N. (Cases 3, 5, 6, and 9), who spent most of their lives in institutional care, have all lost their luster early after their admission. Originally fighting for their aloneness and basking in the contentment that it gave them, originally alert to unwelcome changes and, in their own way, struggling for the status quo, originally astounding the observer with their phenomenal feats of memory, they yielded readily to the uninterrupted self-isolation and soon settled down in a life not too remote from a nirvana-like existence. If at all responsive to psychological testing, their IQ's dropped down to figures usually referred to as low-grade moron or imbecile.

The four autistics mentioned in the preceeding paragraph were placed in institutions from an early age.

Kanner lost track of two cases, Paul A. (Case 4) and Alfred N. (Case 8). However, it's notable that Alfred, a child with an IQ of 140, was placed in many different schools and hospitals. At one point he was given Thorazine.

Two other cases, Donald T. (Case 1) and Frederick W. (Case 2), were considered success stories by Kanner. They were never placed in institutions.

John F. (Case 10) died suddenly at the age of 29.

The remaining 2 cases were not considered success stories by Kanner. But they did not do poorly. Herbert B. (Case 7) was placed in a home only for a short period of time. He was still mute in adulthood, but he ended up in a farm where he was able to help out with various chores. Elaine C. (Case 11) was apparently first institutionalized in 1950 at the age of 18. As of 1970, she was still at Hudson River State Hospital and was reported to be independent, neat and clean.

Kanner comments on the institutionalization factor as follows.

One cannot help but gain the impression that State Hospital admission was tantamount to a life sentence, with evanescence of the astounding facts of rote memory, abandonment of the earlier pathological yet active struggle for the maintenance of sameness, and loss of the interest in objects added to the basically poor relation to people; in other words, a total retreat to near-nothingness... The question arises whether these children might have fared better in a different setting or whether Donald and Frederick, the able bank teller and the duplicating machine operator, would have shared the dismal fate of Richard and Charles in a State Hospital environment. Even though an affirmative answer would most likely be correct, one cannot get away from wondering whether another element, not as yet determinable, may have an influence on the future of autistic children...

Maybe a life sentence is too dismal. It's not impossible for autistics to manage to come out of institutions and resume their lives. But this is probably extremely rare.

Not institutionalizing autistic children when they are young doesn't guarantee independence and employment, of course. But it appears to be practically a requirement if that sort of outcome is to be attained. Note that Kanner reached this conclusion after analyzing 96 cases, not just the 11 mentioned.

Now, why is it that strong warnings against institutionalization are not issued by doctors and other professionals? Why is it that instead some autism associations give the impression that institutionalization is indicated unless there's treatment?

Thought Screen Helmet Creator Michael Menkin Honors Us With His Visit

2007-09-20T09:36:00.000-07:00

Readers might recall I recently wrote about Michael Menkin's Thought Screen Helmet, which is generally used by some people to try to prevent alien telepathic mind control. Well, some people have been using it on autistic children and they have observed, as you might expect, amazing results!

Now, Michael Menkin, the man himself, has honored us with his presence right here on the Natural Variation blog. Isn't that cool? He posted the following message.

As of September 2007 several autistic children have improved by wearing hats with velostat. One girl is now in a normal school and doing well. Here brother has improved markedly and now excels in math. His mother wants me to put the children's records on a website. Another girl who could not speak began speaking after wearing the hat for three months. She is speaking better in 2007 and still wears a hat. If you have more questions please contact Michael Menkin at mmenkin@hotmail.com.

I have many readers who are parents of autistic children, so I thought they might be interested in this. After all, these testimonials sound just as convincing as those of popular interventions, such as Chelation Therapy, MB-12 and the GFCF diet. Come on. Who are we to doubt them?

Amazing Results With... Anything!

2007-09-19T09:04:00.000-07:00

For us parents who've been part of the autism community for years, new nonsensical "cures" don't really come as a surprise anymore. It would seem that everything in the world can cure autism, and you'll always find at least one parent who swears by it.

Here's the latest one: MonaVie(TM) [trytheberries.com]. Feel it. Drink it. Share it.

MonaVie™ is a delicious and energizing blend of the Brazilian açai berry - one of nature's top super-foods - and other nutrient dense fruits. Developed with the philosophy Balance-Variety-Moderation, MonaVie™ delivers the phytonutrients and antioxidants you need to maintain a healthy and active lifestyle.

Wow, that even sounds like science. And who wouldn't want a super-food?

But hold on. MonaVie apparently not only cures autism and a number of other maladies, it's also a wonderful business opportunity.

MonaVie™ offers the most innovative and dynamic compensation plan in the industry. With 8 Ways to Earn Income and 50 percent of the sales volume paid out in distributor commissions, MonaVie™ is a powerfully rewarding opportunity! What’s more, MonaVie™ leverages today’s most effective form of distribution—relationship marketing. With this person-to-person approach, you can share the benefits of the MonaVie™ independent business opportunity with others and be rewarded for doing so, based on your sales and the product sales of those in the organization you helped create.

Plus you don't want to miss out on the alternative medicine boat and all the "epidemics" of everything, do you?

MonaVie™ blends unequaled nutritional power with an unparalleled business opportunity that enables MonaVie™ distributors to capitalize on the surging health and wellness industry.

Can we be sure it works though? But of course. Oprah has endorsed it!

Besides, could you dare doubt all these parent testimonials? I mean, who do you think you are?

My son is being 100% mainstreamed 3rd grade with VE inclusion. At one time I never thought this was possible... God has truely blessed us with the juice... We have had our 7 yo son, PDD-NOS, who has been taking the Active for 5 weeks now. We have seen amazing results... Just last night, we were on our way home from an event at 9:30pm, and he talked our ears off the whole way home- asking question after question. We thought, "who is this child"... I have a 7 yo son on the Autism Spectrum and have seen amazing results during the last two months that he has been on MonaVie... I have had a working theory on the causes of autism and why MonaVie has been so successful with my son. I found this article today written by Dr. Schauss that supports my theory. Since being on the juice, his "connectivity" (as we call it) has gone from around 3 (scale 1-5) to consistently a 5. We began seeing this right before school got out (6/13) and it has continued... I feel like the lord introduced this to my family not only to recover my son, but also spread the word to as many families as I can... My precious, 11 year old adopted, Eskimo son, James, has many diagnosed [sic] with.... He is on medication (Ritelin, Prozac, Seroquel), and that has helped him lots. With the help of diet and MonaVie I am hoping to get him off of these soon... BUT, I can't really say I have noticed James responding better...
(source)

Not convinced yet? That's probably only because you have not heard all about how it cured one child.

Avoiding Institutionalization is Key to a Good Outcome in Autism

2007-09-16T18:05:00.000-07:00

I'll make this short, as it should be self-evident, even though you'll seldom if ever find this assertion in the modern autism literature. The following was said by Kanner about 11 of 96 (11%) autistic individuals who, upon follow-up in their 20s and 30s, he described as managing to "function as self-dependent individuals, mostly well educated and all gainfully employed."

Not one of them had at any time been subjected to sojourn in a state hospital or institution for the feebleminded. This seems to be significant in view of our experience that such an eventuality has invariably cut short any prospect for improvement (Kanner, 1965).

(source)

If you read the histories of the autistic individuals seen by Kanner, it is clear that this consistent lack of intitutionalization in the good-outcome group cannot be explained by "less severity" or anything of the sort. Most of the rest seem to have been institutionalized, judging by Kanner's original 1943 paper and its 1971 follow-up.

I'll leave that as food for thought for those who supposedly advocate for good outcomes in autism, at the same time that they promote the notion that autistics naturally belong in institutions.

Severe Asperger's? Quick Note About Humor, Einstein and Stereotypes

2007-09-15T08:31:00.000-07:00

There are some good arguments against the claim that Albert Einstein was likely autistic. The most compelling one, perhaps, is that it's difficult or impossible to diagnose the dead retrospectively.

There are also pretty good arguments against overpromoting autistic traits in famous people. For example, it has been suggested that positive stereotypes are as bad as negative ones.

The rest of the arguments are not that good and are themselves based on stereotypes, e.g. autistics don't marry, autistics can't ever be successful, etc.

Then there's this odd one (or is it funny?) that I came across:

Einstein was regarded as having a good sense of humour - a trait not seen in people with severe Asperger's.

It appears that this argument has caught on, as it has been paraphrased all over the internet (e.g. here, here and here).

First off, is this "Severe Asperger's" an official classification? How is it defined? Isn't that what one normally calls, you know, "autism"?

Is the author of the argument saying that Albert Einstein had "mild" Asperger's instead? It could be interpreted that way I guess.

Now, is the claim true at all? What is the evidence? I did some research.

There appears to be limited evidence that autistics don't perform as well as non-autistics in tasks related to understanding humor. For example, Emerich et al. (2003) found that HFA adolescents had significantly poorer performance than controls in comprehension of cartoons and jokes.

There's always a possibility that these sorts of results can be explained as part of a language comprehension impairment. In fact, let me make a suggestion to autism researchers: If you ever find that autistics don't perform as well as non-autistics in some test, be it a Sally-Ann (ToM) test or a Weschler intelligence test, consider the possibility that it is due to a language comprehension impairment. But I digress.

Is there any evidence that autistics cannot produce humor? Very little as far as I can tell. There's only one PubMed-indexed study that I could find that might remotely support that conclusion. St James & Tager-Flusberg (1994) is a study involving 6 autistic children and 6 language-matched Down syndrome controls. They found that the only jokes in the study were told by 2 of the children with Down's.

That's not much to go on. Now let's see if there's evidence in the opposite direction.

Van Bourgondien & Mesibov (1987) examined humor used in a group of autistic adults. The study demonstrated that autistics "enjoy a wide range of jokes and that humor seems to enrich their lives."

Werth et al. (2001) is a case report of Grace, an HFA woman who the authors believe is "unusual" because she produces a good deal of humorous and creative word play. (Researchers are not immune to stereotypes, obviously).

Lyons & Fitzgerald (2004) also challenges assumptions about lack of humor in autism.

At the risk of naming more famous people as examples, consider that comedian Dan Aykroyd has stated he has Asperger's (source). Other comedians suspected of being Asperger autistics include Andy Kaufman and Woody Allen. That doesn't seem far-fetched to me.

Conclusion

While there is not a lot of research on the matter, the claim that humor is not seen in people with "Severe Asperger's" is clearly unsubstantiated.

Have Chelation or Biomed Done Anything For Their Major Proponents?

2007-09-14T05:57:00.000-07:00

The current generation of shot-in-the-dark cure approaches to autism (generally referred to as "biomed") has been around for a while now. It's not surprising that many parents who have tried those approaches for years are starting to doubt them (source). Kev has already documented the lack of predictive succcess of 3 of the most loud proponents of chelation and biomed (source).

What I want to go over in this post is a more systematic review of recovery outcomes in the larger group of well-known parents in the biomed camp; the celebrities if you will. I think it would be interesting to determine if there are indications that a strong cure mindset (placebo effect) and the huge variety of treatments tried by such parents (particularly chelation) have had any discernable effect beyond natural developmental progress.

I came up with the following list by considering organizations such as SafeMinds and Generation Rescue, major biomed blogs, and the EOHarm mailing list.

Jim Adams Julia Berle Sallie Bernard John Best Jr. Mark Blaxill Jeff Bradstreet JB Handley Amy Holmes Erik Nanstiel Wade Rankin Lynn Redwood Bernie Rimland Rick Rollens Lenny Schafer Kim Stagliano (3) Ginger Taylor

Considering that Kim Stagliano has 3 autistic children, we are talking about 18 children total in the group, if I'm not mistaken.

I wasn't sure if it was methodologically valid to include Julia Berle and Lynn Redwood, but that would've been a chief complaint if I didn't. Julia Berle, in particular, became well-known only after she showed up with a "recovered" child. She's also not that well-known. I'm not sure about Lynn Redwood on that, but her son was diagnosed with PDD-NOS. The outcomes I will discuss refer to classic autism or autistic disorder. (In other words, I'm trying to be as lenient as possible with the analysis).

There are 2 claimed recoveries in the group, although both are disputed. Readers can form their own judgements, since videos exist in the case of Redwood (video) and Berle (video).

The "recovery" rate for the group is then 0-11%, which is in line with the natural recovery rate of 10-15% reported in the literature. It should be noted that many of these children are still young and could change further.

There are claims of developmental progress, but they are not very impressive. Autistic children do develop (Pry et al., 2007; Charman et al., 2004), despite the impression media accounts might give.

For example, John Best has reported progress in his son's behavior, but it doesn't appear to be anything out of the ordinary. His son started out being obviously autistic, and after several years of chelation therapy, continues to be obviously autistic.

Note that chelation therapy lasts months, not years, when treating severe heavy metal poisoning. Such cases of severe poisoning are normally fatal without hospitalization.

Erik Nanstiel reports some progress as well. His account is peculiar in that he claims the biomed approaches he's put his daughter through have caused her eyeglass prescription to be reduced 60%. This claim is probably unprecedented. It's unclear what biological mechanism could force a change in the curvature of the eye. I suspect there was an error in the earlier prescription. It's a good thing the mistake was corrected, though, because good visual acuity alone can help with learning.

Jim Adams is very interested in chelation therapy, to the point that he conducted a small double-blind placebo-controlled study on the treatment. Results of the study were expected to be known late last year, but there are no indications that anything will be published (source) despite the fact that Jim Adams assured results would be reported regardless of what they were. His daughter has been on the treatment but he found it to be unhelpful.

Then we have a situation such as that of Amy Holmes, one of the first major proponents of chelation therapy as a treatment of autism. She had initially reported her son was making excellent progress in the area of communication, but many years later we find that her teenage son is non-verbal (source). I understand Jeff Bradstreet's case is similar.

Conclusion

From this admittedly not very scientific review, I conclude there are no compelling indications that extensive biomed and/or chelation therapy have proven helpful to the major proponents of the same.

Absurd Autism Treatment # 4: Exorcism

2007-09-13T09:01:00.000-07:00

Chelation therapy is not the only "alternative" treatment to have killed an autistic child. Back in 2003, an 8-year-old autistic boy, Terrance Cottrell, was killed during an exorcism intended to cure him.

“We were asking God to take this spirit that was tormenting this little boy to death,” Hemphill said. “We were praying that hard, but not to kill.”

(source)

The pastor involved was later convicted to, get this, 2.5 years behind bars, plus 7.5 years under supervision.

He told police on the night of August 22, 2003 that he had been holding a series of special prayer services, described by some as "exorcisms", during the previous three weeks to remove "evil spirits" of autism from the boy. Hemphill described how he would sit or lay on "Junior's" chest for up to two hours at a time, whispering into his ear for the "demons" to leave his body. Three women -- including the child's mother, Patricia Cooper -- described to police how they sat on the boy's arms and legs while Hemphill sat on his chest. One woman said she pushed down on Junior's diaphragm several times during the service. At some point during the service, he stopped struggling and breathing. An autopsy later determined that Cottrell suffocated.

(source) (Emphasis mine)

There have been other incidents, such as the one involving a 14-year-old in Indiana.

What's more disturbing is that doctor/parents who are looked up to in certain circles (specifically, the biomed camp) have endorsed it as a treatment that "works". Kev has documented the views of Jeff Bradstreet and Joe Pike (of the NAA) on the matter.

This is not surprising. People who believe in one form of woo seem to be prone to buy most forms of woo. For example, it's not uncommon to find someone who believes in Astrology and also buys Intelligent Design. An HIV/AIDS denialist might also be a global warming denialist. Patients of Dr. Roy Kerry, unsurprisingly, believe Homeopathy really works.

The Emperor's New Pathology

2007-09-12T11:05:00.000-07:00

What distinguishes pathology from non-pathology?

Note that I'm not asking what distinguishes disability from non-disability, or normalcy from lack of normalcy. These are entirely different questions.

Many readers probably assume I am asking a scientific question. But I do not believe it is. I think it's a question of convention, a philosophical question, and ultimately a matter that belongs in the realm of Ethics. Let me elaborate.

There are conditions that no one would dispute are pathologies, e.g. various forms of cancer. When cancer is detected in someone, a considerably lowered life expectancy is practically assured. Additionally, treatment of the condition can be demonstrated to improve the survival rate. Continued medical research will no doubt improve the survival rate even further.

Then there are conditions such as ADHD that many people intuitively find dubious. When about 10% of one end of a normally distributed behavioral spectrum are labeled with a brain pathology, and most of those labeled appear unremarkable to the untrained eye, it's not surprising that people are not going to take the condition seriously. In fact, ADHD is often made fun of. Another such example is Oppositional Defiant Disorder (ODD), a psychiatric condition that is diagnosed when a child strongly disagrees with his or her parents much of the time.

It seems that the pathology status of conditions defined by conventional medicine is rarely controversial (although some examples exist, such as hypoglycemia). On the other hand, the pathology status of conditions defined by Psychiatry is not only often controversial, but it tends to overlap with politics. Some of this could be due to the scientific methodology used in each case, but I think it mostly has to do with the way individuals experience psychiatric conditions and the consequences of their pathology status.

Admittedly, I do not understand what distinguishes pathology from non-pathology all that well, but I do not believe the "experts" do either.

When expert psychiatrists try to apologetically argue that a condition such as ADHD is a pathology, they will invoke a number of arguments that to me appear rather weak under scrutiny. I will go over some of them.

ADHD increases the risk of injury.

Research shows this to be the case and it's not surprising that an over-active child would have a higher chance of getting injured. It's not clear how this demonstrates pathology, though. I could make up a syndrome on the spot with this characteristic.

Extreme Sports Disorder: This is a neurological disorder that causes people to pursue extreme sports. No cause or cure have been identified.

If you find this counter-argument far fetched, consider increased risk of trauma and other medical problems in left-handedness (Canacki et al., 2003; Bryden et al., 2005). Is this enough to classify left-handedness as a pathology like it once was believed to be?

Making up new syndromes is not just a theoretical exercise. For example, the APA has been considering the inclusion of video game addiction in the DSM, a manual that grows considerably with every version that comes out.

There are differences between the brains of people with the "disorder" and those without.

So? Do you seriously expect there to be no differences between the brains of two groups of people who behave differently? The brains of men are different to the brains of women. I would be surprised if the brains of those with Extreme Sports Disorder are the same as those of the general population.

Another example (that Kassiane brought to my attention) is that alien abductees have abnormal EEGs in the temporal lobe. Alien abduction is not in the DSM-IV, AFAIK. While I don't doubt psychiatrists would be in theory willing to make up a syndrome related to alien abductions, it would be interesting to see how they handle the conspiracist circus that would result.

Treatment with neuroleptics controls the symptoms of the "disorder" and has effects on outcome.

There are drugs that can affect the way people behave and feel; no one disputes that. This does not demonstrate pathology either. How difficult would it be to invent a drug that causes people with Extreme Sports Disorder to be afraid of danger, for example? I'm sure it would save lives.

The spoof website on the "anti-effeminate" Hetracil also illustrates this point.

The nature of the risk factors demonstrates pathology.

I do not buy that it's about causation. Not many deaf people would consider deafness a pathology, even though there are no doubt a huge variety of causes of deafness, including injury, viruses and so on. It could be, though, that people in the general population tend to see deafness as a pathology. In that case, consider the relatively low heritability of another condition, left-handedness (Orlebeke et al., 1996).

Medical correlates demonstrate pathology.

Again, it's easy to demonstrate that many ways of being not considered pathologies have medical correlates.

Often times the "medical correlates" of a made-up disease are other made-up diseases. For example, the "scientific rationale" for depathologizing homosexuality was that it didn't correlate with psychiatric disorders. (Incidentally, I think the gay community is asleep at the wheel if they buy this as the proper rationale).

Calling something a pathology shouldn't be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?

The short answer is that it is problematic when the so-called disease refers to your way of being.

If it were no big deal, then shouldn't the gay community be OK with homosexuality being called a pathology?

The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical "cure", which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone's way of being, calling the condition a disease is effectively the same as calling the individual a disease.

This is the case whether we're talking about a disability or a difference.

Absurd Autism Treatment # 3: Thought Screen Helmet

2007-09-11T09:33:00.000-07:00

Ever heard of the term "tinfoil hat"? I'm pretty sure this is where it comes from.

The thought screen helmet stops aliens from abducting humans. It's a tested device that works.

(source)

So how does it work?

The thought screen helmet blocks telepathic communication between aliens and humans. An abductee who took voltage readings from a second helmet while wearing another one demonstrates that this communication is a form of electromagnetic energy. Aliens cannot immobilize people wearing thought screens nor can they control their minds or communicate with them using their telepathy. When aliens can't communicate or control humans, they do not take them.

An how do they know it works? Testimonials, what else.

The thought screen helmet has effectively stopped several types of aliens from abducting or controlling humans. Only two failures from standard thought screen helmets have been reported since 1998. A third failure in 2005 was from a cloth helmet with a smaller square area of Velostat and a Velcro strap which was easily removed by an alien hybrid.

The link of this claptrap to autism was first revealed by a reader over at Skeptico's blog. (One of my favorite blogs, BTW; incidentally, Skeptico has Asperger's). Over at stopabductions.com they have a list of "case histories" of thought screen helmets. One reads as follows.

December, 2000 The woman’s son, age 8, starting wearing a #3 helmet. Previous to the helmet he was diagnosed as autistic, had reoccurring nightmares of what he said were monsters, and told his mother that aliens told him to obey them. He has not been taken while wearing the helmet and his doctors report that his autism has improved markedly. However, he reported that he was abducted on his way to or from school. He had several unexplained marks on his body and told his mother that he had surgery. A neurologist who examined the boy said he has an abnormal EEG.

(source) (Emphasis mine)

Abnormal EEG? Wow. Surely, alien thought control ought to be causing that.

Jenny McCarthy, Indigo Children and Other Gobbledygook

2007-09-09T15:05:00.000-07:00

Over at the Rescue Post, that bastion of critical thinking and deep understanding of everything autism, they are falling over themselves because Jenny McCarthy (1994 Playboy Playmate of the Year) will be appearing in the Oprah Show. You see, McCarthy is TACA's spokeperson, an autism mom, and has written a book titled Louder Than Words: A Mother's Journey in Healing Autism.

This was known as early as May, when Kev wrote a post about it.

Here's someone who could use her celebrity power to really help the autistic community, but instead will apparently use it to peddle various sorts of unproven biomed quackery and, perhaps worse, ridiculous notions of what autistics are. I have no illusion that Oprah will prevent her from peddling even something as irresponsible as anti-vaccination junk.

Reviews of the book say that she found treatments that are the "key to saving Evan from autism." I don't entirely discount the possibility that ABA helped her son be trained into particular skills, but the other stuff is no doubt worthless hooey.

I've read some email messages that say McCarthy's son is "recovered". I'm pretty sure we're looking at one of those claims about children who are "recovering", you know, still very much autistic, but apparently developing. If anything, it's likely to be a Holmes/Bradstreet type of recovery, if you know what I'm referring to.

There's no mention of an official loss of label anywhere, but I should note that diagnoses at age 2 are often inaccurate (Charman et al. 2005, Gillberg et al. 1990). The child's autism was discovered at age 2 after a seizure.

Some news stories say her son is "battling autism". Really? Is that like battling cancer? What happens if he loses? Other stories say her son "has come a long way."

Confusing as all that might be, let me get to the crux of the matter.

Jenny, who runs IndigoMoms.com, is of the belief that Evan is a 'crystal child,' and she herself is an 'adult indigo.' This belief suggests that 'indigo/crystal phenomenon is the next step in our evolution as a human species.' Proponents also suggest that many indigo and crystal children are wrongly diagnosed with ADD, ADHD, and autism. Starchild has more information, for those interested.

(source)

I've critiqued all sorts of claptrap before, but this one takes the cake. Typical of new-agey mythology, they throw in scientific terms like "evolution" to give it some credibility, without even having a basic understanding of the term. That's just the beginning of what could be said about this nonsense.

I honestly don't know which is worse, the belief that the New World Order is conspiring to control the world's population by giving kids autism, or this one.

But wait, if the child is a highly evolved Indigo, why does he need biomed treatment? What's with the anti-vaccination posture? Has Jenny McCarthy experienced a shift in belief systems from one set of hogwash right into another? That wouldn't be a surprise. Note that IndigoMoms.com appears to have closed down for good.

My sense is that Jenny McCarthy is going through a time of confusion in her life. To be fair, that's normal when you have a disabled child. Let's hope she eventually leaves the illusory promises of quackery and new-ageism behind and learns to accept and advocate for her autistic son as he is, mostly for his sake. This is not far fetched. Even someone such as Amy Holmes has gotten to such a place, or close to it, even if she hasn't come out publicly and admitted it.

Absurd Autism Treatment # 2: Foot Detox

2007-09-08T16:21:00.000-07:00

This is probably (physically) harmless, but it has to be one of the most blatant forms of quackery in existence. It's very easy to show it's quackery. See Orac's overview for the details. A commenter there posted a link to a James Randi message which in turn contained a link to a news story that reported on the treatment. Here are some excerpts of interst from the news report.

"I think autistic children should really do this."

OK, that one is a must-have in any story about pseudo-medical nonsense. The interesting part follows.

So we asked the IonCleanse advocates to run the machine without any feet in the water. The water changed color. The women blamed it on bad distilled water which they'd purchased from a local grocer. "You have to understand we were working with some really sick people," said Bonnie. "And this (water) is what Barb had in the car. We were coming here out of innocence. But yes, we do sometimes get some bad water." So we offered to go buy more distilled water, this time from a drug store near our station. For the second time the water changed colors. Beth: I am getting irritated. Because we all agreed the water was not going to change colors. You told me the water only changes colors when someone is sick and needs detox - puts their feet in it. How do you explain this? Barbara: It's probably the water. Beth: And look, there is froth all over in the water which you're telling people is mucus. Barbara: Well it is. It represents that. Beth: That's not mucus. No feet have been in there. I just want to look out for our viewers. I don't want them buying something that doesn't work.

Lo and behold, parents are really doing this with their autistic kids. Check out the following video.

That mom seems quite gullible. Watch her parrot back everything she's heard from the "experts" (read: quacks) about autism and yeast, thimerosal, diets, etc.

Absurd Autism Treatment #1: Neuro Acupuncture

2007-09-08T07:47:00.000-07:00

The video speaks for itself.

On Siblings Who Hate Autism

2007-09-07T06:43:00.000-07:00

Kristina wrote a post titled ~~Hating~~ Autism, Hating Hate back in July, a post which I had missed then. The post is about John Best Jr., evidently, but what caught my attention was something a reader named BRoBBcins wrote in the comments section.

I for one do hate autism, It controls my entire family. I have a little brother with autism and everything is based on wat he can handle, i cant take it anymore. My mom litterally tells me she loves him more than me. If thats not a reason to HATE the diesese idk wat is. I cannot communicate with my little brother, i cannot touch him, he doesnt even know i exist, yet my entire world is based around him. I dont think he even has feelings, hes just kind of there. Go ahead and send me and email telling me wat an evil person i am, or mabye try and help me make since of all of thise, ive tried talking to my mom about it, and she could care less about how i feel.

I feel for this kid, I do. In that particular family the autistic child might be doing OK, but the NT kid is clearly suffering. It seems obvious to me he's not precisely suffering because of autism, though.

The first thing I notice is that there's sibling rivalry in that family. Despite what parents say, let's face it, some children are payed more attention to than others. Does it matter that the child who the parents pay most attention to is autistic in this case? What would happen if we were talking about two NT kids in the same situation?

It's clear that the autism matters to BRoBBcins though. He sees his little brother as less deserving of parental attention than himself. That's what hurts. He feels an injustice has been committed. He also feels entitled, as Kassiane put it.

I think it all has to do with the way he views autism, what he's been led to believe. BRoBBcins seems to believe that his little brother is less than human. Why should his parents pay so much attention to his younger sibling then?

I dont think he even has feelings, hes just kind of there.

As long as BRoBBcins fails to accept his little brother as a sentient being, as an equal, and as long as he sees autism in this manner, I'm afraid he will continue to suffer. It doesn't have to be this way, and I say this because not all siblings of autistic children feel this way.

I know a little bit about this, and I know that many of my readers know about this too. My classically autistic son has an older sister. I'm rather proud of the way she views her little brother. She's very loving in the way she approaches him. They get along in much the same way any brother or sister would, and in fact, if you consider that brothers and sisters often don't get along, their relationship is probably better than most.

My step-daughter has asked about autism, why her little brother is autistic and such. We have discussed difference, disability, human equality and acceptance; as best I could. I think this is key. BTW, she recently started seeing her first "boyfriend", who happens to be autistic (OK, "high functioning", but diagnosed and everything). I think she's well equipped to be an individual who not only tolerates difference but embraces it, and yes, I take much of the credit :)

I don't blame BRoBBcins's parents. Who knows why his views have been shaped the way they have. There's a lot of anti-autism propaganda in the media these days. They will even imply that siblings are supposed to feel bad about autism. The other day my wife brought home an information sheet about autism that basically said that. I read it over and thought that the reality described there was totally contrary to the reality in our family.

High Prevalence of Autism in Adults

2007-09-06T07:31:00.000-07:00

The following is a bullet-point list of pieces of evidence that strongly suggest the prevalence of ASD in adults is high, at least as high as that found in children. [This evidence was first brought together in Autism "Missed" Often, Even Today.]

Nylander & Gillberg (2001) screened adult outpatients of a psychiatric hospital and found that 89.5% (17/19) of "definite autistics" did not have a prior autism diagnosis. The most common existing diagnosis in these adult autistics was found to be schizophrenia, which was considerably more common than the diagnosis of autism itself.
Stahlberg et al. (2004) found that 30% of referred adult patients with ADHD had co-occurring ASD. The prevalence of ADHD in adults is estimated at 4.2% [source].
Over 25 years ago, Shah et al. (1982) found that 38% of the adult patients at a mental handicap hospital had impairment in two-way social interaction, which was "very significantly associated with abnormalities of communication and imaginative activities." This confirmed an earlier study of mentally retarded children (Wing & Gould, 1979). The prevalence of mental retardation is roughly 1%.
Baron-Cohen et al. (2001) assessed adults with the AQ test. About 2% of those in the group of randomly selected controls scored in the 32+ range. The researchers also interviewed 11 students who scored in the 32+ range and found that all of them met 3 or more DSM-IV criteria. About 60% of the 11 met threshold criteria. The general distribution of AQ test scores was replicated in Japan by Wakabayashi et al. (2004).

It's possible to propose alternative ways to interpret each piece of evidence, no doubt. But taken together, it's hard to argue with the inescapable no-nonsense conclusion: ASD is common in adults, albeit often undiagnosed.

When I first listed this evidence, one response was that perhaps ASD is common in adults, but that it would have to be a "mild" form of ASD. This is the "children are more severe these days" argument. There's absolutely no evidence that could lead us to believe this is the case, first of all. Second, the world doesn't work like that. In any group of people, there will be a wide range of variation of skills and characteristics. There has to be a distribution of "severity" in ASD adults that goes from very obviously autistic to nearly neurotypical. Sure, the shape of the distribution could have shifted, but is there any compelling reason to suspect this is the case? Furthermore, Shah et al. (1982) provides evidence of high prevalence of ASD in adults who are by no means "mild" anything.

Addendum (11/8/2007)

See Interverbal's post about Matson et al. (2007). The researchers found that 50% of a group of adults with intellectual disabilities met criteria for PDD.

Addendum (04/11/2008)

See Kev's post about a study by Dorothy Bishop. The researchers found that 31% of a group of adults with developmental language disorder met criteria for ASD.

Addendum (10/05/2008)

Baron-Cohen has apparently come out with a new study of university students. "In the Cambridge study, seven of 378 maths students were found to be autistic, compared with only one among the 414 students in the control group." Clearly, he has found that the prevalence of ASD among the students tested is at least 1.01%.

Final Addendum (09/22/2009)

A report on phases one and two of the Adult Psychiatric Morbidity Survey (APMS) 2007 has been published. The first key fact of the report states: "Using the recommended threshold of a score of 10 or more on the Autism Diagnostic Observation Schedule, 1.0 per cent of the adult population had ASD." See also the pertinent post at LB/RB by Anthony Cox.

Invisible Good Outcomes

2007-09-05T10:24:00.000-07:00

Longitudinal outcome studies of autism vary in their results. Roughly speaking they will report that 10% of autistic individuals have "very good outcome" and another 10% "good outcome", with the remaining 80% having "fair or poor outcome." (There are no indications these proportions have changed significantly after the introduction of early intensive behavioral interventions or any other interventions).

The concept of "good outcome" is, of course, based on neurotypical values, such as having no difficulties in social interaction, living independently without supports, and so on. There are various standardized tests they use to determine if a person has good or bad outcome.

Enter

An alternative view of outcome in autism.
Ruble & Dalrymple (1996)

This is an old paper, although very innovative in my view, and never before discussed on the web as far as I can see.

What they do in this paper is try to find an alternative way to define outcome in autism, based on concepts such as 'happiness', 'contributing to the community', 'learning', 'making choices', etc.

They start out with a non-representative group of autistics, that is, one with unusually poor standard scores. All of the adults in the group are found to have a "poor outcome" based on the traditional metrics of outcome. Nevertheless, the researchers then step outside the traditional framework.

Despite their social and communication difficulties, however, many of the adults from the present study were working in valued jobs, participating in family and community activities, learning to make choices, and generally happy. Thus the findings of this review, which indicated poor outcomes, led us to question the utility of traditional definitions of determining outcome and to reconceptualize this concept.

The authors characterize good outomes in the group as "invisible" to traditional methods of qualifying outcome. They present four "vignettes" of adults from the group who were doing well, and then discuss variables that seem to predict good outcome. Note that the predictor variables also differ substantially from the medicalized variables you will usually find in traditional outcome studies.

What seemed to be an important predictor of success was that whenever individuals and their families were confronted with challenges, they sought and successfully accessed various supports. For example, when families were told to "place" their young children, their parents sought and created alternatives. Some of the families were the first to push for integration in school and used their natural community and family ties to include and support their child. When families needed residential options, they created them. The families maintained monitoring and input into all the programs their children were in and kept in close contact with their children. They still do. These families identified new opportunities and advocated that their children be part of those opportunities. Family advocacy appears to have been a key factor in successful outcomes for Elaine, Ed, Andy, and Ellie.

It's an interesting paper. Check it out.