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Autism and diagnostic substitution

11 Apr

As we all know, one of the planks underpinning the platform of the vaccine/autism hypotheses is the idea of an autism epidemic. This ‘supporting idea’ says that there was a sudden, massive increase in the amount of people with autism. This is as opposed to a sudden massive increase in the amount of people _diagnosed_ as autistic, or even more accurately, a sudden, massive increase in the amount of people _eligible_ to be diagnosed.

This was all in and around 1992 when two things happened. The first thing is that the vaccine schedule was altered. The second thing is that the DSM was altered, widening the criteria and allowing in many more people to collect an autism diagnosis then pre-1992.

The first idea – that there was a de facto increase in the amount of people with autism – is the one favoured by those who think autism is caused by/triggered by vaccines. Personally, I feel that numbers two and three have more validity. But the anti-vaccine people need to have an epidemic in order for the vaccine hypotheses to hold water. No epidemic = no sharp rise = no need for an obscure hypothesis to account for it.

However, as Professor Grinker points out in Unstrange Minds:

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.

Unstrange Minds, Page 4

Five big pieces of the awareness puzzle started to come into play. Another one (and yes, I’m stretching this a bit) is what’s called the ‘Rainman‘ phenomenon. This refers to the first real emergence of autism in popular media which purportedly led to many more people becoming aware of autism within their own communities.

As part of Unstrange Minds, Grinker went to Korea and looked at the autism experience there. This is part of what he found:

When [Milal School] was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism.

Its my opinion that this sort of thing was not too uncommon in the not-too-distant-past of the West. I know from my own experience that offering services for some forms of mental illness are protested against by residents close to the proposed services in the UK. People fear what they don’t understand.

In the case of autism, I think we in the West are past Korea’s point. We are very much more accepting of autism as an existing state and thus people are more prepared to see it and more people _do_ see it. Would you have wanted to take your autistic child out for a walk to the shops if you lived in Korea in the mid-90s? No, me neither. In this country in 2008 I do so with no worries at all.

But believing these things are accurate and having evidence to support that belief are two different things.

Professor Dorothy Bishop of Oxford University led a team to study:

whether some children who previously had other diagnoses are now being diagnosed with autism. We applied contemporary autism diagnostic criteria to adults with a history of developmental language disorder, to discover whether diagnostic substitution has taken place.

The results were eyebrow-raising. In total, 12 (31%) of the participants would’ve been diagnosed as being on the spectrum, of which 8 (21%) would have been diagnosed with ‘classic’ autism.

Bishop et al are quick to point out that:

….it would be rash to conclude that increasing prevalence of autism is entirely explicable in terms of broadening diagnostic criteria

which is very true but it also an inescapable conclusion that, in the words of some of the anti-vaccine believers, these kids were ‘missed’. Or as Bishop et al put it:

….this study provides direct evidence of diagnostic substitution, indicating that many children who were diagnosed with severe language disorders in the 1980s and 1990s displayed behaviours that would be regarded as meriting a diagnosis of ASD according to contemporary criteria. This appears to be a direct result of changing diagnostic criteria from DSM-III through DSM-IIIR and DSM-IV.

One aspect of the study has already caused it to be ignored by the anti-vaccine believers. The fact that Professor Bishop is a Wellcome Research Fellow. I wanted to talk to her about this and find out what that meant. She replied that:

The Wellcome Trust is not involved with manufacture of pharmaceuticals – that’s a common misperception….

And she attached a brief commentary on the subject that is produced by the Trust.

We do not make pharmaceuticals.

The Wellcome Trust is frequently and erroneously thought to be a drugs company, or to have been the charitable arm of a drugs company.

The confusion stems from the fact that from 1936 the label ‘Wellcome’ was shared by two entities, both founded by the same man:

1) the Wellcome pharmaceutical company (confusingly known as the Wellcome Foundation Limited in the UK)
2) the Wellcome Trust.

The Wellcome Trust (the charity) was established by the will of Henry Wellcome to be the sole shareholder of the pharmaceutical company, and to use the profits for charitable aims. Until 1986, the Wellcome Trust was the sole owner of the pharmaceutical company, which generated all of the charity’s income.

In 1986, the first of two share sales created a public limited company, Wellcome plc, which owned the Wellcome pharmaceutical company. The second sale took place in 1992, reducing the Wellcome Trust’s shareholding to around 25 per cent of Wellcome plc. Further asset diversification resulted from the 1995 merger of Wellcome plc with Glaxo plc, creating Glaxo Wellcome plc, which subsequently merged with SmithKline Beecham plc to create GlaxoSmithKline plc.

The Wellcome Trust maintains a small stake in GlaxoSmithKline, as part of a broad portfolio of investments that includes equities, property and other forms of corporate investment. It has always made all of its funding decisions completely independently of the pharmaceutical company.

Professor Bishop is the first to point out the limitations of this study – its small sample size. But this is, as she states, direct evidence of diagnostic substitution and, should the percentages be mirrored elsewhere, somewhere between 20% – 30% of the ‘epidemic’ could in fact be attributed to diagnostic substitution.

Ya ken that hidden horde, aye?

24 Feb

So – the ‘Hidden Horde’ – the term that anti-vaccinationists like to smirk about as evidence of an autism epidemic. The logic goes like this: if there’s no autism epidemic then where are all the [insert age here] year old autistic adults? I’ve heard people asking for evidence of 75 year old autistics (conveniently forgetting that the average mortality age in the US and UK is around 70), 50 year olds – even 30 year olds.

Never mind that there’s been plenty of evidence for adult autistics. Thats not convenient for the anti-vaccinationist agenda so it gets ignored.

Anyway, todays Sunday Herald carries another story about adult autistics in Scotland called ‘Revealed: ‘invisible’ adults living with autism’.

According to the National Autistic Society (NAS) Scotland report, due to be launched this week, 52% of adults have not had an assessment of their needs since the age of 18…..It is estimated that more than 35,000 adults in Scotland have the condition, but campaigners said they were “invisible” to local authorities, who are failing to record the number of people with autism in their area.

The population of Scotland is 5,062,011. The latest prevalence estimates for the UK are 1 in 100. This means that 50,620 people are autistic. If 35,000 adults in Scotland are autistic then 69% of autistic people in Scotland are adults.

Hidden horde aye?

The evolution of Eli Stone

1 Feb

This is a Guest Blogged piece written by new bloggers from Hollywood Spectrum.

For those who don’t know (I wish I were one of you), there is a TV show about to premiere called "Eli Stone". It was likely going to be a pretty run-of-the-mill premiere. Possibly, it was going to be a total non event.But, the plot includes autism. Not only does it include autism, but it involves a lawyer doing what has never happened in real life-he win’s a case about how mercury in vaccines caused autism in a child. This led to a number of news stories, internet discussions and blog posts.

Well, after the initial press on this, the American Academy of Pediatrics (AAP) sent a letter to ABC/Disney asking them to pull the show since it could erode confidence in vaccines.  Somehow this was characterized as big-bad AAP trying to bully ABC/Disney.  Now, Disney is a company that has revenues of nearly $9B per quarter.  Yeah, AAP was twisting their arm by giving them free publicity.

Did anyone really believe that ABC/Disney would pull the show?  I mean, really, they just got a lot of free publicity for what was likely to be a pretty forgettable show.   How can I say this was going to be forgettable?  Because the original script was something worth forgetting.  Consider when Eli Stone visits a Chinese acupuncturist (who somehow brings about visions in Stone).  The good Dr. Chen was given such amazing lines in pigeon English as:

"You go regular doctor? Dr. Chen not MRI."

and

"I have patient, you come back half hour."

and

"No good hate dead people. Relah. Think good memory father. Dr. Chen help ungrateful son" 

OK, so, the dialogue was lame.  And, believe me, this isn’t the only example.  A whole blog post could be devoted to it, but this is an autism blog not a TV critic blog.  Maybe Dr. Chen is  supposed to be "comedy".  But, is it OK to stereotype for comedy?  If so, how about stereotyping (incorrectly) autism for drama.  Let’s look at how about the "autism" part of the script is portrayed. Here is their stage direction for the William character from the script:

William doesn’t smile. His autism doesn’t permit it.

What?!?  Autism "doesn’t permit" smiling?  So, people who smile aren’t autistic?  That should bring down the autism "epidemic"!  Just reject the diagnosis for all the people with autism who smile.  My guess is that it would be a pretty rare condition then. 

In the original script, the fight is with an insurance company who won’t pay for the treatments of the young "William", who is autistic.  The first mention of the word "autism" comes when the mother is describing this situation:

My son has autism. He needs Risperidone every day..

Whoa.  Was that about mercury?  Nope.  It’s about Risperidone.  Yep, instead of mercury causing autism, the story was about how the fictional kid needed an off-label prescription for an antipsychotic drug and the insurance company wouldn’t pay.

How does that jive with the writer’s idea of autism?  Well, the mother describes the value of Risperidone as:

After a month on the drug, he actually smiled.

For the record, Risperidone is pretty serious medication.  It has been shown to benefit some people with autism.  But, "smiling"?  I guess that scripts don’t need science advisor approval before being approved.

Somewhere between first and, let’s face it, lame final draft and premiere, the story shifted to vaccine/mercury caused autism.  A story line guaranteed to generate controversy.  A story line guaranteed to get publicity.

It’s too bad.  Yes, the reliance of the original script on Risperidone might have caused some consternation amongst the autism community.  Yes, the stereotype of the kid "whose autism prevents him from smiling" was lame at best, damaging at worst.  But, insurance coverage for autism is a big deal right now.  A good presentation of how insurance companies deny claims for autism could have actually helped people and families with autism.

Epidemic or greater awareness?

4 Oct

OK, this one has been beaten to death. I am amazed that it still think that there is evidence of an “epidemic”. This is especially true of those who rely on the California Department of Developmental Services (CDDS) data. These data are so muddy as to be able to hide a real increase or a real decline.

These data have severe limitations as noted before on this blog. They are not “epidemiological” data. They are not a census of those with autism in California. They are a count of who is getting services and this can and does vary dramatically over time and geography.

1984 Birth CohortThat said, let’s take a look at how service rates change with time for a given birth cohort. (click to enlarge). [edit: this is the 1984 cohort] This is much as you would expect. Kids start being listed at age 3. The number increases year after year until a plateau is reached. This happens at about age 7 or 8. There is some slope to the curve: additional kids are being added to the roll even after 8 years old.

This is very straitforward and expected. But, what happens over a longer time to this cohort? Click to enlarge this graph.1984 Birth Cohort CDDS Data Ignoring the obviously leading arrow and label for now, it is abundantly clear that something unexpected has happened. A second large increase in the number of clients is observed. Why would this happen? Well, one of the possible explanations is shown by the arrow. In 1997, the “epidemic” was declared. Autism awareness increased dramatically.  One possibility is that the 1984 cohort was still in school where people might notice them and identifiy them. This cohort nearly doubled in numbers from 1997 to 2003. 

This brings up so many questions, many of which we just can’t answer with the data we have access to.

It would be interesting to see if there was substitution. Were these kids (heck, teenagers) listed by CDDS under a different label?

How did roughly half the kids in this cohort avoid detection? I think the new phrase is “it’s like missing a forrest fire”. Well, these forrest fires were blazing for 13 years before people started noticing them.

Also, what happened to other cohorts? Well, for one thing, a similar jump in cohort size around 1997 is observed for birth years in the 1980’s and early 1990’s. It isn’t as clear or as consistent birthyear-to-birthyear as you go back in birthyears, but it is observable in some birth cohorts. One example where one can see this is the 1960 birth cohort, which increased about 15% around year 2000.

That last paragrah wasn’t clearly written, I admit. But if you are thinking, “what? The CDDS ‘found’ 15% more 40 year olds?” you read it right.CDDS clients by year as listed in 1986 and 2007 This graph (click to enlarge) shows the number of CDDS autism clients as listed in 1986 and 2007 by birth year. The 1986 (in black) data are the same as shown before. The drop in the client count in the early 1980’s is an artifact: those kids weren’t identified yet in 1986. The 2007 client count (in red) show something very interesting, at least to me.

There is an increase in autism clients for almost all the birth year groups. 40-year olds, 50 year-0lds, even older people were added to the client list as “autistic”. Again, we don’t know if or how these people were classified before the “epidemic”. They could have been (and likely were, in my opinion) clients listed in another category in 1986.

Let’s take a look at the difference between these two curves. I included data for people with birthdays in the early 1980’s, but these are not reliable. Those people weren’t through the first round of identification by 1986. 

CDDS Autism Clients in 1986 and 1997 by birth yearThe graph shows the difference as a percentage increase. This allows us to see the older cohorts easier. At the same time, it allows people to accuse me of doctoring the data to make it seem like a bigger effect than it really is. That would be an obvious way to try to divert attention from the fact that the “epidemic” caused a roughly 40% increase in CDDS autism clients born in the 1960’s. For those clients born from 1940-1955, the increase was 70+/-28%.

Think about that a second. Autism amongst forty year old people increased by 70% during “the epidemic” years.

How can this be? How could CDDS have missed people with autism for forty or fifty years? Sure, some of these people may have moved into the state. Some of them may have been cared for by family and not been served by CDDS. The trends of these birth cohorts with time do not show the sharp rise in the late 1990’s as observed above for 1980’s cohorts.  For me, this is suggestive that the those who could be identified in the school systems, were.

Obviously there are a lot of open questions here.  How and why these increases were observed is a big question.  Why no one has seen fit to mention this before is another question.  The CDDS did not create these data sets for me.  Someone else has been paying for that for some time, according to Mr. Kirby…who also hasn’t mentioned this.

People keep saying, “you can’t have a genetic epidemic”.  Well, you can’t have an epidemic of a childhood onset “disease” in forty-year-olds either.

____________________________________________

Edit: 

CDDS Clients vs. year for multiple birth cohorts First, note that the birth cohort in the first figue above is from 1984.  That is not clear.  Second, here is a graph with multiple cohorts.  Note that all the cohorts have an upswing in the client-numbers in the late 1990’s.  Even the 1990 cohort does this.  It does not appear to be based on age, but on calendar year.

In 1931…

27 Sep

In 1931 Eli Lilly invented autism.  Or so the story goes.  Again, as the story goes, all autism is mercury poisoning or, more specifically, Thimerosal poisoning.  Thus, Autism didn’t  (and couldn’t) exist before the invention of Thimerosal in 1931.

Dan Olmsted has made a number of bloggish press releases on the “original” autism cases. You know, those kids that Dr. Kanner first reported on. According to that story, somehow all of the first cases (since there weren’t any before then) somehow found their way into Dr. Kanner’s practice.

Wouldn’t it be strange if there were autistic individuals born before 1931? Wouldn’t you expect Mr. Kirby or Mr. Olmsted to let us know if there were evidence of autism that didn’t fit this little model?

In a recent blog post, David Kirby noted that:

“But it turns out that a private citizen has paid the state each quarter to analyze the autism numbers according to year of birth, and not just by age group. State law requires that such privately funded analyses be made available to anyone else who asks for it

So I asked for it. What I got was rather interesting.”

Well, someone else asked for these data sets. Now I have them too.  Joseph has them as well.   And they are rather interesting.

The spreadsheets list the number of clients getting CDDS services by year of birth.  Open the most recent one and there, at the very top, are three of clients born before 1931.  Top of the list, someone born in 1920.   If you look through the past years, you will find as many as five in a single year.  There is evidence for more as some people come and go.

I can already write one of the responses to this post. “Thank you for pointing out that the number is so much less than 1:150 for the older generations”.

While you hope that we all go running after that particular red herring, reread the statement above: “..as people come and go from the system”.  Consider our now 87 year old client mentioned above.  He/she entered the system as autistic in late 1999.

Yessir, at 79 years old this person was added to the CDDS autism roll.   There are a lot of possible reasons.  He/She could have moved into the state, his/her family could have found that they no longer could handle the job alone or, and this is the big question, he/she was already in the system but was only identified as autistic at this late age.

That’s not the only example.  In 1992, a 70 year old was added to the list under autistism.  In 1992 a 64 year old was added, followed by another in early 1993. 

There are more, but you get the point.  These people, people born before the invention of Thimerosal are autistic and are being added to the CDDS lists as autistic late in life.

I do wonder why Mr. Kirby didn’t mention this.  I do wonder why he didn’t shoot a quick email to Mr. Olmsted to point this out.  One has to think that Dan Olmsted would be interested in getting the stories of the pre-Thimerosal, pre-Kanner autistics.  Then again, one has to imagine that Dan Olmsted probably has seen these data for himself already.  Why neither of them has seen fit to mention this or dig deeper into this is an open question.

For once I agree with David Kirby, “What I got was rather interesting”.

What is in a number?

25 Sep

As just about any parent in the US (and probably a lot elsewhere), “what is the prevalence of autism and you will get a nearly instant response, “1 in 150”.  They may know that this is also 6.6 per 1,000.  They will probably know that it was reported as 1 in 166 before that, and so the numbers are climbing.

Ask the same parents, “Where is the prevalence highest?” and you will probably hear, “New Jersey”.  They will probably know that it is 10.6 per 1,000 there, or more that 1 in 100.

Ask the parents, “What group had the lowest prevalence?”  My guess is that few will answer.  Some might recall that Alabama reported 3.3 per 1,000. 

Even that is pretty staggering:  Alabama has less that 1/3 the prevalence of New Jersey? Why aren’t people from New Jersey flocking to Alabama to avoid autism? Why isn’t moving to Alabama high on the Generation Rescue protocol for avoiding autism? Why isn’t anyone asking Congress to study “Autism amongst the Alabamans”?

Take a closer look, though.  Include subgroups.  Include ethnicity.  Who then has the lowest reported prevalence?  Almost no one knows.  Take a look at page 18 of the MMWR report by the CDC on autism. Who has the lowest prevalence?  Hispanics in pretty much everywhere checked.  More to the point, Hispanics in Wisconsin have 0.3 per 1,000 as the reported prevalence.

No, that isn’t a typo.  0.3 per 1,000 lowest compared to 10.6 per 1,000 as the highest:  a factor of 35 different.  It’s a factor of 22 lower than the national average.

Drop the Amish!  (well, since no one has ever bothered to ask their permission, don’t start with the Amish!) Let’s do a study on the Hispanics of Wisconsin!  Demand that your congressman/woman support a bill to study Autism in the Wisconsin Hispanics!

Maybe we will find out they don’t vaccinate!  Maybe we can spend $200,000 on a phone survey!

Maybe the numbers aren’t accurate.

The thing is, it is so obvious that no one commented on this.  For those invested in the epidemic, the reasons are fairly likely the obvious.  You can’t claim an epidemic with innacurate numbers.  You really can’t if we are still in catch-up mode to identify subgroups.

If we do a better job identifying people with autism, the numbers go up. Simple.  It could be hiding an increase in real prevalence.  Heck, it could be hiding a drop, for all we know.  You don’t need enough scientific background to even understand an “r” value to get that.

This isn’t news to the real front line.  Take a look at page 19 of the 2003 report on Autism by the CDDS.  Between 1987 and 2002 the total number of people served under autism by the CDDS increased by 733%.  That supports the epidemic, right?  But, at the same time, the numbers of Hispanics went up by 1,743%! 

How could this happen?  Were Hispanics more susceptible to the vaccines in the 1990’s, causing their numbers to skyrocket?  If so, why is the fraction of Hispanics served in the Regional Centers lower than the White fraction?

You don’t have to speculate, the CDDS tells us:

Increased efforts on the part of regional centers over the past 15 year to reach specific ethnic groups may have contributed in part to the proportional increase in Asians and Hispanics with autism entering the system.

Increased efforts results in higher numbers identified.  Not a tough one to figure out.  Just like increased awareness results in higher numbers identified.

Sorry all you epidemic believers.  If you really believed your own story you would have made a big deal out of the low numbers amongst Hispanics in Wisconsin and called for a study to understand their “resistance” to autism.  But, then you would have to admit that part of the reason the numbers in California went up was better identification amongst minorities. 

The thing is, we need to make a big deal out of these numbers.  It is shameful that we are allowing a large amount of our people to go unidentified.

That’s one big problem with the epidemic party line.  It allows, heck it requires, that we neglect the fact that we are undercounting and underserving people.

That is just plain wrong.

What if you could prevent autism?

21 Sep

What if you could prevent autism?  What if there were a way that people could dramatically reduce the number of people born with autism? What if it took a concerted effort on the part of everyone to make it happen?  Should we do it?  Would people complain?

Would we respect the lessons of  the past if it had already happened?

Well, it may have already happened.  “May” as in it requires correlating one set of trends with California DDS numbers on Autism.  We all know how dangerous that can be.  CDDS data are not epidemological.  They don’t tell you how many people in California have autism, they tell you how many people in California are getting services under autism.  People who forgot the importance of that distinction have found themselves promoting an epidemic that didn’t happen. 

With that lesson in mind, let’s look at some CDDS data.  Let’s look at the number of clients with autism by birth year.  Further, let’s look at these data as they looked in 1986.  That is pre “epidemic”.  Pre DSM-IV.  That is before schools added autism as a separate category. 

  CDDS autism clients by birth year as recorded in 1986The data show something I didn’t expect: a drop in the number of autism clients.  Not just the noise that gets those promoting the epidemic to say, “look from one quarter to the next we see a drop”.  Nope, this looks like it could be the real deal, that elusive goal of those claiming an epidemic.  It happened in the 1970’s. 

Keep in mind that these data are from 1986.  So the drop in numbers in the 1980’s is because those people hadn’t been identified yet.  It isn’t “real”.

Also, keep in mind that these are raw numbers.  No attempt to normalize into a rate (individuals with autism per 1,000, say) has been made.  California went through a notable population increase over this time.  So, any drop in rate estimated (from these non-epidemological data) would be even greater.

Given this great amount of limitations, take a look at this graph.  These are the autism clients by birth year as reported in 1986.  The data are noisy, but I see a big plateau for kids born in the 1960s with about 100 clients per birth year followed by a second plateau in the 1970’s at about 75 clients per birth year.

That is an indication that there may have been  a roughly 25% drop from one decade to the next in the number of people with autism.   What happened?

Rubella prevalence in the USWell, since I recently posted about the dangers of only digging deep enough to support your own pet theory (and that is good advice), I’ll put this forward as a “Medical Hypothesis”.  Consider this: the Rubella vaccine was licensed in the U.S.  in 1969.  What happened before that?  There was a Rubella epidemic in the 60’s.  Lot’s of kids were born with CRS, Congentital Rubella Syndrome: a known cause of autism.

What if the Rubella vaccine is reducing the number of kids born with autism?  Wouldn’t that be a good thing that should catch the attention of the “autism community”?  It is a little strange that one would have to use this route. Keeping Rubella at bay results in a lot fewer deaths, including the unborn.  Also, fewer would become deaf, fewer would have congenital heart defects.

From the CDC:

The greatest danger from rubella is to unborn babies. If a woman gets rubella in the early months of her pregnancy, there is an 80% chance that her baby will be born deaf or blind, with a damaged heart or small brain, or mentally retarded. This is called Congenital Rubella Syndrome, or CRS. Miscarriages are also common among women who get rubella while they are pregnant.

I would have thought that would be enough to get the point across: Rubella is something to prevent.  Perhaps the vaccine is a good thing?  Perhaps it is working?  I don’t think there is any “perhaphs” about it.  Overall, preventing Rubella is a great thing.  But some people seem to want to deny that vaccines even work.

Take a very rough estimate.  Assume from these data that 25 people a year in California alone have had autism prevented by the Rubella vaccine.  From 1970 to 2007, that works out to 675 people.  And that is just a secondary benefit.

Maybe by calling the Rubella vaccine “preventing autism” it will catch the eye of those who have somehow forgotton how bad this disease is.

The Wizard Of Oprah

21 Sep

Hey, it’s Thursday evening. Why don’t we stop by and see what the cat dragged in over at Rescue Host. Holy Vaccinations Batman! It’s more autism epidemic gibberish! The current installment comes to us from Kelli Ann Davis, who writes:

I knew the day was coming. With numbers like 1 in 150 children and 1 in 94 boys, “it” was bound to happen.

Her “it” apparently refers to the recent appearances of some fellow believers on daytime television. Davis goes on to share some apparent feelings of vindication:

I must of recited “the-numbers-are-getting-larger-and-our-voices-are-getting-louder” mantra at least a bazillion times over the last 5 years, cuz that’s how many meetings it feels like I’ve been in. but it never seemed to resonate.

There’s a good reason it probably didn’t seem to, for Kelli Ann, and doesn’t resonate in general. It’s because there isn’t any data that shows that “the-numbers” are actually getting larger. There is no question that there are indeed many more people being diagnosed as “on the autism spectrum”. But the thing is, the very definition of what professionals say autism is, changed dramatically in the not too distant past – even the conceptualization of autism as a spectrum of disorders is relatively recent development.

I think there’s a reasonable explanation for many of the “vaccines dunnit” voices getting louder. I’ve noticed a similar phenomenon in my own household, and I’m even guilty of it myself from time to time. Sometimes people craving attention (or just needing to be listened to) get louder and louder. Do four or five little children always calmly discuss who should get to go first in a game? Do they always rationally reason with each other about who should have the biggest piece of cake? What about children competing for the attention of a parent? Do they always stop, raise their hands, and quietly wait their turn? My opinion is that it’s often natural to shout. Shouting doesn’t automatically make one incorrect in their assertions, but it doesn’t make one correct either. It’s just shouting.

The difference here is that while shouting like children may garner attention, it does not change scientific reality. It just doesn’t matter if there are a million voices reciting the mantras of a flat earth, an autism ‘epidemic’, or flying saucers. No quantity of repetitive nonsense will construct any assertion’s truth. Without evidence that it is true, a failed hypothesis is doomed to the clutches of a handful of village idiots – and probably inevitably, a few celebrities too.

What does Kelli Ann have for us to demonstrate that “the-numbers-are-getting- larger”? Will it be daytime TV demagoguery?

Okay. So now “it” has arrived….in full Oprah force…..and I’m anxious to see if the “powers that be” FINALLY get “it.”

Ah, the “Appeal to Oprah”. Extremely similar to a simple appeal to popularity, but garnished with a household name that’s guaranteed to stir emotion and draw both media, and popular attention.

Kelli Ann might as well just write:

“Cuz everyone knows, “if you seen ’em on Oprah, they must be right”.

Should the “powers that be” Kelli Ann refers to, whomever or whatever that means, be worried if they don’t “FINALLY get it”? Only if they pay attention to that TV personality behind the curtain. Let’s hope they aren’t fooled into asking for a brain, heart, courage, or a trip home, and instead, ask to see everyone’s data.

Is it Kirby Season Again?

21 Sep

Well, it’s September, nearly time for the California DDS to put out the latest quarterly reports.  That means it’s nearly Kirby “spin the numbers” season.  What spin, you may ask?  Last time, David Kirby announced that the numbers may be going down.  At the same time, Rick Rollens noted that they were going up.  Even though they were proposing  exactly opposite interpretations, both were claiming it as evidence of an epidemic.

Even though Kirby’s post was last July, some of his comments still stick in my mind.  Why?  In his reach for crutches to support the fake epidemic, he has started pointing fingers at immigrants.

Legal and illegal immigration continues to rise from countries that still use the full amount of mercury in childhood vaccines.

First consider the fact that people like Kirby and others ignored immigration when they spun the supposed increrase seen in the 1990’s it would have been inconvenient for the “epidemic”.  But, what bugs me more is the jingoistic tone. Well, it’s the tone plus the fact that he could have spent the five minutes he should have spent to realize that it isn’t supported by the facts.

Let’s face it, when you are talking about immigration in California, especially illegal immigration, you are talking about Hispanics.  Hispanics make up about 49% of the legal immigrants, and probably most of the illegal immigrants.  Another big chunk of legal immigrants are Asian (about 40%).

Mr. Kirby notes:

But it turns out that a private citizen has paid the state each quarter to analyze the autism numbers according to year of birth, and not just by age group. State law requires that such privately funded analyses be made available to anyone else who asks for it.

That does sound like some interesting data!  I will post on that shortly.  In the meantime,  let’s take a look at the data by age-group, shall we?  Let’s look at the total number of people with autism who are White as a function of time:

Kirby Season Figure 1

Wow, it just goes up and up and up.  Doesn’t stop, doesn’t flatten out.  Doesn’t go down.  Where’s the drop that Mr. Kirby sees?  If immigration is pumping up the overall numbers, I’d have expected to see a drop in the numbers for Whites.  Take a closer look: the curve isn’t precisely straight. Let’s draw a line in through the data before 2006 (data points in red) and another through the data points after 2006 (in blue).  Oh, my, the slope for the 2005 data is 848+7 and the post 2006 data is 1058+25 (in units of individuals with autism per year).

Closeup of Figure 1

The total number of Whites is not only increasing, but the rate of increase is going up too!  I don’t see how one can spin immigration to explain that.

Now, do put any significance in the change in slope?  Yes and no.  Yes, something is going on, it’s small but there is something causing changes in slope from time to time.  The real question is why?  To just say, “Well the numbers are going up, therefore my pet idea is true” is irresponsible.  One should look closer at the numbers and decide why.

That is my basic problem with the Kirby/Geier approach to “research”.  Dig deep enough to support your theory and no farther.

So, let’s look at the Hispanic population and see what is happening.  Well, there is big increase in the number of Hispanic people served by the CDDS under autism in the time period here (mid 2000 to mid 2007) the number went from 2533 to 9212.  Or, in epidemic speak, that’s a 364% increase.  By comparison, the numbers for Whites went up by 234%.

Kirby Season Figure 3

You can easily see how that could be spun into blaming the rising numbers on immigration.  If you didn’t already know about the trends amongst Whites especially.  Still, take the five minutes to look at the data closer.  Take a look at the percentage of Hispanic clients served under autism.

An increase from about 19% to 27% in just 7 years?  The increase must be those immigrants a Kirby would say.  Or, is it?  Consider that Hispanics make up 35% of the California population.  Even with this big increase, they only account for 27% of the total number of CDDS clients under autism?  The problem, Mr. Kirby, is not whether Hispanics are driving up the numbers.  The problem is that the great State of California is probably under-serving one of its largest ethnic groups!

Anyone remember Jurassic Park?  Remember the problem with their computer program that did the census on the dinosaurs?  It counted until it reached the number it expected and then stopped.  Guess what, that’s what people who rely on the CDDS numbers have been doing.  They look until they find the data that supports their theory and they stop.

The extra steps taken here go further than a Kirby or Geier analysis, but they only scratch the surface.  And, yet, I will be bold and say that it is a crime that we are undercounting and underserving our own people.  By ignoring the fact that the CDDS could be undercounting some groups, those promoting the “epidemic” helped the undercounting continue.  This despite the fact that the CDDS is actively reaching out to minority groups.

Mr Kirby ends his post with the statement:

Regardless of one’s position on the mercury-autism contretemps, I hope everyone can agree that an actual drop in the numbers, no matter what the cause, would provide a welcome respite from the endless chorus of grim news we all seem to face these days.

Well, if we had an accurate count of the individuals with autism, we could debate that.  We don’t have an accurate count.  That’s sort of the point, Mr. Kirby.  Your “gold standard” of epedimiology, the CDDS dataset, is woefully inadequate.  Once we have an accurate count of everyone and are providing the appropriate supports for those who need them, we can start talking about whether it would be good if the numbers should go down.  Until then, identifying the uncounted is a good thing.

I would add, there are causes for a drop in autism numbers that would make me very unhappy.

I would welcome an end to the “grim news”.  Any time you want to tone down the rhetoric and start working on the real problems at hand is fine by me, Mr. Kirby.

Why Aren’t You “Scared To Death”?

13 Sep

Do you miss Dan Olmsted’s writing? He now apparently showcases his version of scientific brilliance over at Rescue Host.

Recently, he tried to pass off the Flu shots and Chinese mercury hypothesis (which I thought was David Kirby’s, but I guess I was wrong) without much more than unfounded speculation and belief.

California, of course, is ground zero as we watch autism rates keep rising — even after mercury was “removed” from childhood vaccines starting in 1999 (the situation is much more complicated than that, since more and more pregnant women and younger and younger kids are getting mercury-preserved flu shots). So if you believe as I do that autism is fundamentally an environmental illness that whacks a subgroup of susceptible kids, mercury from China — or anyplace else — is every bit as important as mercury from vaccines.

I asked him the following in the comments:

If you wouldn’t mind Mr. Olmsted, take a look at a graph of the 3-5 year-old autism caseload cohort for the past 5 years.

Such a graph would include children born at the starting point of the “removal” in 1999 you mentioned. What do you see? Does the trend look linear to you?

Do you really believe there is combined flu shot uptake and airborne mercury data that would exactly and inversely match (in dose and effect, if any) the reduction the use of thimerosal in childhood vaccines in order to produce a trendline with an R-squared value of .9954 for this time period?

You can view such a graph here.

To which he replied:

An “R-squared value of .9954” is way beyond my non-scientific expertise. All I can say is that thimerosal use has actually been increasing in by far the most vulnerable group — pregnant women — and that at least some studies suggest that greater pollution directly correlates with a greater risk of autism. If the CDC had recalled all thimerosal-containing vaccines in 1999, we’d have a genuine “natural experiment.” But we don’t. Nor will the government study autism rates in never-vaccinated kids; the survey by Generation Rescue found ominous correlations between vaccines and NDs including autism, but it’s been widely ignored.

The survey by Generation Rescue? Right. Did he just make up that part about thimerosal use increasing in pregnant women? It kind of looked like it to me, so I asked and commented as follows:

What evidence do you have that thimerosal use actually increased in pregnant women for the period immediately following the “removal” of thimerosal from childhood vaccinations? (required to make your hypothesis work)

The majority of childhood vaccines were thimerosal-free or contain only trace amounts by 2002 (more on that below). Here’s flu shot uptake estimates for pregnant women for the three years that follow:

2002 – 12.4±3.9 %
2003 – 12.8±4.4 %
2004 – 12.9±5.0 %

Source

Note: there is an increase in the estimate for 2005, but children born in 2005 and later are not old enough to be reflected in the 3-5 year-old California autism caseload cohort yet. Additionally, estimates for 2006 were back down to 12.9 percent.

Source

Mark Blaxill and JB Handley showed up in the comments following that, and Olmsted apparently did not reply further. So the question of where Dan Olmsted might have found any data to make his Flu shots and Chinese mercury hypothesis plausible, will have to remain unanswered for now. But, while we’re on the subject of data-free gibberish, have a look at a piece of something posted by Dan Olmsted at Rescue Host on September 11th.

At some point, common sense has to prevail. For instance, let’s stipulate that better diagnosis accounts for a gargantuan 36 times more cases of bipolar disorder among kids over the past 10 years. That still would mean that the condition quadrupled in a decade — suspiciously, the same decade that autism, asthma, ADD, ADHD etc. soared out of sight. The deniers have to explain away every digit of that 40-fold number, because even a “mere” fourfold increase in the real incidence would be deeply disturbing. How can anyone be certain that one-tenth of that 40-fold increase isn’t actually real? And if they can’t be certain, why aren’t they scared to death?

Emphasis mine.

An appeal to “common sense” is a sure sign that what follows is probably not data that supports his hypothesis. Is common sense really the best way to arrive at correct answers about any subject for anyone, regardless of their background? What do statements like, “An ‘R-squared value of .9954’ is way beyond my non-scientific expertise”, tell us about the context to which Mr. Olmsted’s “common sense” might be reliably applied? Is autism epidemiology likely to be anywhere near Olmsted’s knowledge and expertise?

Sometimes common sense seems like a good way to operate, but the reality is that many things in science have quite complex answers. It’s also the case that science does not have all the answers (nor does it claim to). None of this will apparently stop Mr. Olmsted from forging ahead with assertion and anecdote in the rest of his post of course.

Did you catch this part of that paragraph above?

“…suspiciously, the same decade that autism, asthma, ADD, ADHD etc. soared out of sight.”

Did you see any real data or science whatsoever that actual autism prevalence “soared out of sight” in the past ten years? Me neither. So here you go any “Flu shot and Chinese mercury” proponents, now is your chance to post that real data or science in the comments – really, Mr. Olmsted needs your help if he’s to avoid the inevitable “You’ve got nothing!”. Either that, or get him a new hypothesis to work with (something with corroborative data preferred).

As for Mr. Olmsted’s final question in that paragraph, I’d like to answer it from one perspective.

We can’t be absolutely sure that there hasn’t been some real increase in autism prevalence, there might have been. To conclude that there has been a real increase in autism prevalence wouldn’t require much more than good data that shows it’s actually true. However, to conclude that there has been a real increase without supporting scientific evidence, but based on “stories”, is unscientific, if not a bit silly.

I can’t be absolutely 100% certain that an alien abduction has never occurred, but this lack of certainty does not translate to “therefore alien abductions are real”. I can’t be absolutely 100% certain that bigfoot doesn’t exist either, but again, that lack of certainty does not translate to “bigfoot is real”. I don’t live in fear of being abducted by aliens or encountering a hairy giant biped while on a hike with the kids, despite an abundance of “stories” about these things. I’m also not “scared to death” that there could indeed be an increase in the actual prevalence of autism. It is a possibility, but I have seen no evidence of it’s truth. I do see an increase in storytelling though.

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