Archive | June, 2008

A quiet concession

3 Jun

While much has been made of a certain “concession” lately, it is worthwhile noting that the past month has seen a significant shift in the mindset of people pushing the autism “epidemic”.  In vaccine court it was the petitioners (plaintiffs) who opened with the admission that if there is any group of people with autism as a result of vaccine injury, the number would be so small as to be invisible to epidemiological studies.  (This didn’t stop them from closing with the latest Geier paper claiming that they can see the effect of thimerosal on the autism rates.)

But, this hasn’t been such a sudden shift.  As far back as last November, David Kirby noted:

“Finally, to all those who are going to post comments about the autism rates in California not coming down, following the removal of thimerosal from most vaccines: You are right. The most likely explanation is that thimerosal was not responsible for the autism epidemic.”

Baby steps….baby steps…

That’s my way of saying to those who would bravely rise up in their seats and proclaim, “stop the hate speech!” that the above is progress.  Sure, we still have to continue to endure the “epidemic” language for now.  Why he can’t just admit it in full, I am not sure.  Oddly, Mr Kirby doesn’t put forth a valid suggestion of what caused this “epidemic” of non-thimerosal-induced autism.  He does try a last-ditch effort to prop up the possibility of a thimerosal-induced-autism-epidemic with claims of immigration and pushing the goalposts back to 2011.  

But, I felt I had to acknowledge the fact that even Mr. Kirby is stating that the most likely answer is that it is not thimerosal before I go on.  Because, if one looks at the data just a little farther, one can find a likely answer for why there is a larger number of young people identified with autism than older people.  It isn’t news to us, and it isn’t news to Mr. Kirby and the rest: one likely reason is substitution.  I don’t know which they would try to avoid more, admitting that substitution is a big effect or an MMR jab, but let’s look a the data.  Just a peak. 

Consider  Autism as a function of age in the CDDS (California Department of Developmental Services) data.  Keep in mind, this is service data–i.e. this is a count of who is receiving services from the CDDS, not a count of who has autism in California.  This is not epidemiological grade data.   But, since it has been used so much, let’s move forward, keeping the caveats in mind. (click on the graph if you want to see it larger and more clear)

 

So, Autism count vs. age (data in black), what do we see?  Of course, we see a big peak in the younger ages.  This is the “Tidle Wave” or “Tsunami” or “Insert Other Hate Speech Term Here” that people like to use to make this scary.  But, as you have noticed, I have included the data for “Mild Mental Retardation” as well, in red.   What do we see there?  A dramatic dip in individuals identified with mild mental retardation in the younger ages.  Does anyone believe that something happened in California to reduce the number of people with intellectual disabilities?  If so, they aren’t very vocal about it.

If I were reading this for the first time, I would be suspicious of someone using only one mental retardation category.  Believe me, all mental retardation categories show much lower numbers in the younger age brackets.

This is a clear indication of “administrative substitution”.  [edit–see comments below] Joseph has done a lot of work on the CDDS data in the past and notes (below) that it is very difficult to draw conclusions about substitution from the publicly available data.  However, this is similar to what people have reported in the literature especially using special education data: people with autism have very likely been mislabeled, their autism label was “substituted” for a different label.  They weren’t “missed” as the favorite straw-man arguement would have it, but mis-labeled.

One person in the AutismOne media discussion (as reported by AutismNewsBeat) kept saying, “you ain’t seen nothin’ yet”, implying that the future is going to be very different from the past.  I have to agree, in the future, more adults with autism will be correctly identified.  They won’t be in hospitals with schizophrenia diagnoses, for example.  This will be a good thing.

Frankly, I’d like to see that change come sooner.  I’d like to see adults properly identified and appropriately served now.  We have to move away from baby steps and take bigger steps away from the “epidemic” and acknowledge that unidentified/misidentifed adults with autism are almost certainly out there.

Instead, we have people asking to “Green Our Vaccines“.  The “Green Our Vaccines” idea is a very cute way to mask the typical “epidemic” speech.  But it is the same old story: autism is vaccine injury and new.  Note that almost all of the groups sponsoring the “Green our Vaccines” rally are autism-related.   Sorry to divert to that topic somewhat, but I can’t help thinking that all that effort is being put into that rally by people who actively supress the existance of adults with autism.  I can’t help thinking that the present and the future would be better if they were acting to help everyone with autism, now.

(noted, this has been edited to more correctly reflect Joseph’s opinions on substitution.  Also, I missed another Green Our Vaccines link.)

How many autistic amish?

3 Jun

Yesterday, Joseph wrote a great post that looked at the prevalence of low functioning autism amongst the Amish and found it correlated strongly with non Amish sources.

Today, I want to look at the Amish through the lens of the ‘new’ prevalence that The Autism Omnibus Petitioners expert witness (for the families) Professor Sander Greenland testified to.

Now, as we all know, when Dan Olmsted first started writing about the Amish he claimed that both Amish children are never vaccinated and that the Amish either don’t have autism, or it is very rare.

It has been established since than that Omsted’s ‘reporting’ (which constituted asking a water cooler salesman) somehow missed the fact that the Amish actually do vaccinate in pretty high numbers.

Since that time, as the autism/vaccine hypothesis has become weaker and weaker we have seen a ‘silent switch’ amongst its proponents. Gone is the talk about ‘epidemic’ and hundred of thousands of children ‘poisoned’ to be replaced with talk such as:

My message is this: “We need more research to determine if a small subset of kids is genetically susceptible to lifelong neurological injury from something, or things, in our current vaccine program.

This has been echoed by Dan Olmsted. When Autism News Beat stepped into woo-land and visited Autism One, Dan Olmsted was quoted on camera as saying (this is a hurried transcription, apologies for slight errors):

…you try to listen for anything that’s useful in terms of information. Sometimes they tell you things that they don’t mean to in terms of how..uh..you know we learned things about the Amish from a blogger who tried to destroy my reporting about that because he basically talked to somebody who confirmed that there were very few cases of classic, regressive autism. So…it’s, you know…that’s the way it is…

So, we can see that the ‘silent shift’ is underway. Nobody acknowledges it but the media people amongst the autism/vaccine believers have switched their stance. Now we’re only looking for a small subset of regressive cases.

This was born out by the families expert witness Professor Greenland. He was asked to tackle the epidemiology for autism and stated that the number of kids made autistic by vaccines (assuming it had happened at all) was so small it could not be detected by epidemiology. He contended that it was in fact a subset of a subset he called ‘clearly regressive autism’.

Using his data, we could see that ‘clearly regressive autism’ accounts for 0.015% of a given population. According to Elizabethtown College the Amish population of the US is about 220,000.

So, in real terms we are looking for (0.015% of 220,000) 33 ‘clearly regressive autistic’ people.

According to Mark Blaxill, Olmsted has already found:

….less than 20 cases

Which is good news. It means he must already be over halfway in finding all the ‘clearly regressive autistic’ people he needs to in order to establish the Amish have the same rate of ‘clearly regressive autism’ as the rest of us.

The Amish Anomaly is an anomaly in one respect only – it is anomalous to keep silently shifting the numbers you want to find. Now that David Kirby, Dan Olmsted and the Autism Omnibus families are all on record as only looking for a ‘small subset’ isn’t it time that the Amish Anomaly was seen for what it is – anomalous.

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

2 Jun

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

–

Summary

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

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

Background

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

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

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

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

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

Why low functioning?

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

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

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

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

[source]

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

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

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

Minimum Prevalence Calculation

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

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

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

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

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

California Comparison

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

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

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

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

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

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

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

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

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

The Great Autism Rip-off

1 Jun

I had to pinch myself to check I was actually awake and not dreaming when this landed in my inbox this morning.

This is a truly excellent piece of journalism on autism and the growing CAM (Complimentary and Alternative Medicine) industry (Small Pharma?) that surrounds it. And its in the Daily Mail.

I can imagine many people choking on their cornflakes this morning. A little JAB of reality.

In this burgeoning market, private doctors and clinics have sprung up across the UK claiming they can treat or even ‘reverse’ the disorder.

Recent research published in the Journal Of Developmental And Behavioural Paediatrics found that a third of parents of autistic children have tried unproven ‘alternative’ treatments.

Worryingly, the study claims one in ten has used what the experts class as ‘a potentially harmful approach’.

I’d personally say the figures were a little lower than that now. As MMR fear in the UK has tapered off, parents turning to CAM has (I think) dropped off. One only has to take a look at the slackening number of posters on the various anti-vaccine pro-CAM autism websites such as JABS to see this in action.

Parent to four autistic children, Jacqui Jackson explained how many of us try something silly before coming to our senses:

‘I bought enzymes and supplements from America, which cost a fortune. I even paid thousands for a special mattress, blankets and pillows with magnets sewn into them that the sales people promised would do wonders but, of course, didn’t work.

‘Autism is seen by some people as big business.

‘I meet parents who want a cure and spend money in the hope they’ll have a normal child. I try to warn them that there is no evidence any of these things work, but they’ll often go ahead.’

I hold my hands up and admit we tried a bit of quackery – fad diets and even homeopathy (its all on this blog somewhere) – because we didn’t know any better basically.

In his exposé the Mail reporter claimed to have an autistic child so he could ask some CAM autism practitioners over here what to try:

During my investigation, I was recommended expensive tests, vitamin supplements and special diets, ointments, suppositories and injections to ‘flush out toxic heavy metals’, bizarre-sounding high-pressure oxygen chambers and intravenous infusions of hormones – and told in each case that they could bring about a complete recovery from autism.

Yet medical experts say there is no evidence to support their claims, and in fact many of the treatments I was offered were potentially harmful, and even possibly fatal.

The experience left me disturbed at the lack of regulation surrounding these practices.

Its nice to hear someone from the mainstream media stating what some of us have been stating for the last few years!

The report mentioned how:

This week, new legislation aimed at protecting consumers from ‘rogue traders’ came into force, prohibiting businesses from making ‘false claims’ that a product is able to cure illness.

Its about time. Hopefully, some of these CAM artists will be investigated under the auspices of this new law.

The reporter went to see a few DAN! registered UK docs. The experience wasn’t pretty. One made outlandish claims for Secretin but didn’t ask for any medical records. One pushed chelation and never mentioned Tariq Nadama. Another said the reporter would have to commit to a year of rubbing in a skin cream chelator of dubiouis eficacy. Dr Lorene Amet failed to disclose that she wasn’t actually a doctor of medicine (its not uncommon for DAN! ‘doctors’ to not actually be doctors).

Its a highly revealing piece of a grubby, grasping little world that preys on the parents of autistic people. Thanks are due to the Mail for reporting on this so accurately and thoroughly.

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