Saturday, September 29, 2007

The Epidemic Of Autism... Among 18-21 Year Olds

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?

Thursday, September 27, 2007

Sallie Bernard and a Novel Form of Sour Grapes

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?

Tuesday, September 25, 2007

Ahmadinejad: "No homosexuals in Iran"

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.

Monday, September 24, 2007

Thank You Jenny McCarthy... For The Extra Traffic

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.

See Also

Sunday, September 23, 2007

Take a Guess

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.

  1. 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....

  2. 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...

  3. 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.

  4. 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.

  5. 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."

  6. 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).

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. 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."

Saturday, September 22, 2007

More on What Institutionalization Does To Autistics

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?

Thursday, September 20, 2007

Thought Screen Helmet Creator Michael Menkin Honors Us With His Visit

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?

Wednesday, September 19, 2007

Amazing Results With... Anything!

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.

Sunday, September 16, 2007

Avoiding Institutionalization is Key to a Good Outcome in Autism

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.

Saturday, September 15, 2007

Severe Asperger's? Quick Note About Humor, Einstein and Stereotypes

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.

Friday, September 14, 2007

Have Chelation or Biomed Done Anything For Their Major Proponents?

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.

Thursday, September 13, 2007

Absurd Autism Treatment # 4: Exorcism

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.

Wednesday, September 12, 2007

The Emperor's New Pathology

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.

Tuesday, September 11, 2007

Absurd Autism Treatment # 3: Thought Screen Helmet

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.

Sunday, September 09, 2007

Jenny McCarthy, Indigo Children and Other Gobbledygook

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.

Saturday, September 08, 2007

Absurd Autism Treatment # 2: Foot Detox

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

The video speaks for itself.

Friday, September 07, 2007

On Siblings Who Hate Autism

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.

See Also

Thursday, September 06, 2007

High Prevalence of Autism in Adults

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.

Wednesday, September 05, 2007

Invisible Good Outcomes

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.

Monday, September 03, 2007

A Simple Selection Bias Model Explains Generation Rescue's Survey Results

A while back Kev, Prometheus and Orac discussed how underwhelming Generation Rescue's survey results were and some peculiarities of the data that seem to invalidate the survey. What I want to do in this post is go over a model that explains the survey results, including discrepancies between its findings and those of prior phone surveys. Data of this nature can sometimes result in knowledge that wasn't expected, as I will hopefully demonstrate. (I am using data Kev helpfully put into an XLS file here).

ASD - Both Sexes

Strikingly, the survey found that while 3.01% of all vaccinated children had an ASD diagnosis, about 3.73% of all unvaccinated children did. That's right. The survey found autism to be more common among the unvaccinated. While this difference is not statistically significant, I think Kev was correct when he characterized it as disastrous for Generation Rescue's political goals. It also contradicts years of claims by GR itself and Dan Olmstead in regards to the Amish and so on.

Later on I will explain how they managed to spin this result.

[Note: 'Statistical significance' means that we can assert the survey found a difference, with 95% confidence.]

As noted shortly after Kev posted his analysis, both ASD rates are very high relative to the consensus prevalence of autism. Let's compare them to a recent CDC phone survey which found the diagnosed prevalence of autism in the US to be 0.57%.

What might explain the discrepancy? For that, we need to consider the survey's methodology. This was an automated phone survey. That is, households are contacted at random by a computer with a short recorded introductory message, in this case one that read as follows.

This is SurveyUSA calling Sonoma County parents with a private, confidential survey about vaccinations and children's health. If you have a child age 4 to 17, press 1. Otherwise, press 2.


(source)

Most persons answering the phone will hang up at this point. But that would be fine if the introduction weren't so obviously biased. Evidently, parents of autistic children who are familiar with the anti-vaccination debate will be more likely to continue with the survey. In fact, given the results of the survey, it is clear that households with autistic children are about 5 times more likely to continue with the survey than households in the general population. (We can also conclude something about SurveyUSA's best-case response rates, but that's not important to this analysis).

This bias in the introductory message ('introduction bias' from now on) easily explains the high prevalence of ASD found in the vaccinated population of children. Consider that the vast majority of children are vaccinated.

I do not, however, believe it fully explains the high rate found in the unvaccinated group. I say this because households with unvaccinated children are no doubt likely to continue with the survey, regardless of the presence of autistic children. This is a key point. In fact, Generation Rescue was somewhat surprised to find 6% of children were completely unvaccinated. Heightened interest in the part of parents of autistic children is not going to be as significant a factor in the unvaccinated group.

Therefore, a second bias, in the opposite direction, seems necessary to explain the high prevalence of autism (6.5 times the CDC prevalence) in the unvaccinated population of children. I will call this the 'genetic bias', one that is well known. That is, parents of autistic children will often not vaccinate subsequent siblings, and such siblings have a considerable higher rate of autism compared to the general population. Even in the relatively small group of parents who blog, I know of two parents who have unvaccinated autistic children: Not Mercury and Kim Stagliano.

ASD - Boys vs. Girls

In boys, vaccination was found to be a non-significant risk factor relative to ASD (OR = 1.17). In girls, however, vaccination was found to be a statistically significant "protective" factor (OR = 0.37). That is, girls are almost 3 times more likely to be diagnosed with ASD if they are not vaccinated, according to the survey results.

The Generation Rescue leadership must not believe the results of their own survey. Otherwise, I'd expect them to post a warning such as the following on their website.

Please Note: We believe vaccines pose a non-significant risk of autism in boys, but they are a protective factor when it comes to girls. We urge parents to vaccinate girls.


OK. They might believe only some of their results, or they might have decided that throwing girls under the bus is the politically beneficial course of action.

It seems far fetched that something would be a risk factor in boys, but a protective factor in girls. From a quick Google search I conclude this would be unprecedented. Nevertheless, the boy vs. girl discrepancy in the survey is of interest. How might it be explained?

I first checked if the introduction bias is the same across boys vs. girls. It turned out to be close. I calculated the CDC prevalence of autism for boys vs. girls given the ratio reported in the press as "nearly 4:1". The resulting prevalence was 0.91% for boys and 0.23% for girls. The resulting bias factors (survey prevalence divided by CDC prevalence) were 5.07 and 5.57 respectively. This tells me that parental interest in the anti-vaccination issue is not significantly skewed by the child's sex.

It follows that the genetic bias must be skewed, and this does appear to be the case. The bias factors in the unvaccinated group were 4.33 for boys and 15.17 for girls. That's quite surprising. To emphasize, unvaccinated girls participating in the survey were found to be diagnosed with ASD 15 times as often as in the general population of girls.

Either not vaccinating girls is a significant cause of ASD, or familial autism is more common in the families of autistic girls. (Any other explanations?) I'm inclined to believe the second explanation, though I haven't found much support for this in the literature. Tsai et al. (2005) comes close. Either way, this seems to be an interesting direction of future research.

"Like" Autism and ADHD

So far we have noted that the survey did not find vaccines to be a significant risk factor for ASD, either in boys or children in general. It did find vaccines to be a "protective" factor in girls. Despite this, Generation Rescue made the following claim.

We surveyed over 9,000 boys in California and Oregon and found that vaccinated boys had a 155% greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys.


(source) (Emphasis mine)

What they did is aggregate the data for ADHD and autism and made a general claim about "neurological disorders". The claim is technically true. I'm sure they could've aggregated asthma and diabetes and made a general claim about health outcomes, but that would've been too transparent. The statement is clearly not a bastion of honesty. (I'm sure readers can tell I'm holding back on my characterization of the statement).

Another thing they did in their survey information page is cherry pick the highest risk ratio they found for boys with ASD, the one for plain autism, which is 1.61. They did not mention the ASD risk ratio, 1.17, which not as impressive, or the risk ratios for PDD-NOS or Asperger's in boys.

ADHD

The survey did find significant risk ratios in the ADHD population, and these deserve to be analyzed in their own right. About 11.02% of the vaccinated children were reported to have ADHD vs. 5.15% of the unvaccinated children.

[Note: What I'm calling ADHD here corresponds to both ADD and ADHD in the survey results. Concensus in Psychiatry is that there's just one condition called ADHD and not two.]

The rate of ADHD in the vaccinated group is a bit high, although not by much. A 2003 CDC survey found that 7.8% of all children in the US had an ADHD diagnosis. (It did not vary a lot from state to state). This tells me that the introduction bias exists in ADHD too, but is not as significant as in ASD households, and this makes sense. The vaccine hypothesis is not as politically hot in the ADHD world. It follows that the genetic bias will also not be significant, because it's unlikely that parents will stop vaccinating subsequent siblings based on an ADHD diagnosis.

We're still left with a relatively low prevalence of ADHD in the unvaccinated population. But I think this can be easily explained by a third bias, which I will call the 'healthcare bias'. That is, households where children are not vaccinated are also less likely to seek diagnoses of ADHD. This is quite plausible when it comes to ADHD, given that it's such a subjective and controversial diagnosis. This bias probably exists in ASD as well, but I'd suggest it can't be nearly as common.

Partial Vaccination

The survey included a category called "Partially Vaccinated." No doubt Generation Rescue's intention was to find some sort of dose-response relationship between ASD and vaccination. But they did not. What they found is that ASD is over-represented among the partially vaccinated, more so than among both the vaccinated or unvaccinated. This is an obvious finding, in retrospect, considering that many parents will stop vaccinating a child once he or she is diagnosed with ASD. The survey designers must not have considered this problem.

Comment and Predictions

Given that fairly obvious biases explain the survey results, and given that the risk factors involved are underwhelming, I do not believe that public resources should be spent on a methodologically valid follow-up. Generation Rescue could decide to invest on a follow-up, but I see a couple problems with this: (1) Eliminating the introduction bias will result in a much more expensive survey, as more calls (probably 5 times as many) will need to be made to achieve the same level of statistical significance; (2) Generation Rescue probably realizes that by eliminating the introduction bias, vaccines will be found to be a clear "protective" rather than a risk factor for ASD. (Yes, you may consider that a "dare").

Generation Rescue has brushed off the introduction bias. I don't know if they realize this bias is only unimportant if it affects both the vaccinated and unvaccinated populations equally. I have explained why it obviously does not.

Either way, a phone survey can only tell us about the approximate rates of diagnosed ASD in a population. It doesn't tell us much about the true prevalence of ASD. For that, we would need a whole-population screening. Even then, other biases, such as the genetic bias, need to be accounted for.

The most interesting finding of the survey, in my view, is that unvaccinated girls are 15 times as likely to have ASD than expected based on prior surveys. This is probably not explained by the introduction bias. I believe it would have to be explained by an extraordinary genetic bias or some other bias not considered thus far.