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Anti vaccine activists are angry about a new study…and they didn’t even bother to read it

14 Mar

This is a big piece of what the “vaccines-cause-autism” idea is built on. Really bad analyses. Another study shows up showing that vaccines don’t cause autism. People immediately jump to give talking points to their community: “ignore this study! In fact, it’s just another conspiracy to defraud you!!!!!”*

But they know from history, their community doesn’t check. They don’t test whether the talking points hold up. Either that, or they really are this bad at simple math.

One reason I slowed down a lot on writing debunks of the “vaccines cause autism” community is that it’s very repetitive. It only takes a few minutes to see where they make their mistakes. I admit, I have the training and the time to do that checking, but it leaves me wondering. As in, it’s hard to not ask: “are they really this bad at science? Are they so biased they don’t know they are wrong? Or, are they lying?” I don’t know. What matters most is they are wrong. I am grateful that I had the time to spend checking their claims and was able to not get sucked into that world.

That intro aside, there was a recent study that, once again, shows that the MMR vaccine doesn’t increase autism risk. 21 years since Wakefield’s junk study and we are still spending time and money countering his misinformation. When you look at what the autism community needs, it’s just sad to see resources used this way. But I get it. The anti-vaccine community is doing real harm (note the rise in measles in the US and elsewhere). But, dang, I’d like more work done to help my kid.

So, what’s this new study? Measles, Mumps, Rubella Vaccination and Autism: A Nationwide Cohort Study. With the conclusion:

The study strongly supports that MMR vaccination does not increase the risk for autism, does not trigger autism in susceptible children, and is not associated with clustering of autism cases after vaccination. It adds to previous studies through significant additional statistical power and by addressing hypotheses of susceptible subgroups and clustering of cases.

Thanks for doing this, but, again, the results are not surprising in the least.

Naturally this brought about a big response from the anti-vaccine community. The go-to place for defense of “vaccines cause autism” used to be the Age of Autism blog. I went there and found they just recycled a piece from a guy named James Lyons Wieler. Apparently he was once a scientist, but he now seems to be a guy asking autism parents for money to write bad articles about how vaccines cause autism. In this case has found the “Smoking Gun” for why the MMR study is so wrong.

(1) The smoking gun is the study-wide autism rate of 0.9-1%. The rate of ASD in Denmark is 1.65%. Where are the missing cases of ASD? Given past allegations of this group’s malfeasance and fraud, the rest of the study cannot be accepted based on this disparity alone: the study group is not representative of the population being studied.

Clearly they must be fudging the data!!!!!

This appears to have become the talking point that the anti-vaccine community is passing around. It was picked up by Brian Hooker. He wrote “A Scientist’s Rebuttal to the Danish Cohort Study“:

1. Children were notably missing from the study sample:

First and foremost is the underascertainment of autism cases within their data sample. The study authors used Denmark population registries of children born in Denmark of Danish-born mothers which should reflect the current reported autism incidence in Denmark at 1.65% (Schendel et al. 2018, JAMA). However, the autism incidence within the sample of the Hviid et al. paper is 0.98%, meaning that approximately 4,400 autistic children are missing from this study. The authors do not discuss the discrepancy in the number of cases.

Again, his number 1 point, the missing children!

Even JB Handley (remember him? Yes, he’s back) wrote about this. Focusing his whole piece on this “missing” group in the MMR study: New Danish MMR study shows autism rate of 1 in 100—CDC should rush to Denmark!

2. The most compelling data in the study will never get covered: why is the autism rate in this study only 1 in 100?

Here in the U.S. we’re at 1 in 36! Shouldn’t CDC researchers rush to Denmark to figure out why their autism rate is so much lower than ours? For every 1,000 Danish kids, only 10 have autism. But here in the U.S., we have 28 per 1,000, that’s 177% more autism! I thought Paul Offit wanted everyone to believe the autism rate was the same everywhere? What gives?

Hold on to your seat, Handley. It’s about to get discussed.

I had thought I’d take the easy route and just email the study author for an explanation. That could have answered the big question for Handley, Weiler, and Hooker. But that would take a day or two to get a response from Denmark. Why not just, you know, read the paper? Or, just the introduction?

Under the “Abstract” section of the MMR paper, which has the “missing” autistic kids and a lower prevalence rate:

Participants: 657 461 children born in Denmark from 1999 through 31 December 2010, with follow-up from 1 year of age and through 31 August 2013.

Under the methods section for the earlier Denmark paper, which has the higher prevalence rate:

All live births in Denmark between 1980 and 2012 were identified in the Central Person Register and followed through 2016 for an ASD diagnosis

It’s not that hard to compare the two studies.

One study looked at Danes born from 1999 to 2010. And took data from 2013. This is the MMR study.

The other study looked at Danes born from 1980 and 2012. And took data in 2016.

Apples, meet Oranges.

Seriously, people are surprised that they came to different answers as to the overall prevalence? I mean, this is your “smoking gun”? This is the best the “vaccines cause autism” community can do? If nothing else, one study took data later than the other. You are the “it’s an epidemic!” team, surely you accept that the autism rate is higher in the later dataset.

But, hey, this didn’t take the full 5 minutes I allocated to check the claims of this “smoking gun” against this new study. I still had 4.5 minutes.

So, let’s see if the data really are compatible. Can we take the data from the prevalence study and get the same number as in the MMR study? Yes, I’m a geek and this is what I do. But we just saw that 2 Ph.D.’s (Hooker and Wieler) and a business guy (Handley) didn’t think to do that. Is it really that hard? (I do wonder how Handley made money. Seems like he must have relied on someone else to do the numbers.)

I just wrote about the autism prevalence study: Yes, there are a lot more adult autistics than commonly thought. The real question is what we do with this information. I have the graph from the prevalence study, so I ran the numbers quickly. If we limit ourselves to the autistics in the MMR study (born 1999 to 2010) and take data in 2013, we get a prevalence value of 1.02%.

1.02% using the prevalence study. Compared to 1% in the MMR study.

They are the same. No “malfeasance”. No “fraud”. No “discrepancy”. And, Mr. Handley, no evidence you can use to blame the HepB vaccine for autism.

Now for the dull part. Here’s my math.

Step 1: I digitized the graph. The red points are where I took prevalence data from the graphs. Each line represents 2 birth years, so I took points where for the age of the average kid in each cohort in 2013.

Here’s the summary table from those data points.

I did this fast. Let me know if I made a mistake. That’s why I’m showing my work. It’s not precise because, well, it’s done by hand. Also, there’s the fact that the MMR paper was for kids born from 1999 to 2010. The prevalence study has kids grouped by 2 years. So I have data for 1998-99 where I only really want 1999. It’s good enough. The “age in 2013” is what the digitizer gave me for the datapoint positions I chose. I can’t get exactly, say, 10.5. But, again, it’s good enough.

Anyway, there’s no “smoking gun” as James Lyons Weiler says. There aren’t children “notably missing” as Brian Hooker claims. And the “most compelling data” according to JB Handley is just that he can’t read a scientific paper.

This is a big piece of what the “vaccines-cause-autism” idea is built on. Really bad analyses. Another study shows up showing that vaccines don’t cause autism. People immediately jump to give talking points to their community: “ignore this study! In fact, it’s just another conspiracy to defraud you!!!!!”*

But they know from history, their community doesn’t check. They don’t test whether the talking points hold up. Either that, or they (people like Handley, Hooker and the rest) really are this bad at simple math.


By Matt Carey.

*Yeah, you guys are pushing a conspiracy theory. I know you like to say “oh, he called us conspiracy theorists, therefore we don’t have to listen to him.” Surprise me. Grow a backbone and defend the points in this commentary rather than either (a) ignoring it or (b) dismissing it because I pointed out that you are claiming scientists conspired to fool the world.

Why autism at 2.5% isn’t surprising.

29 Nov

Let’s get one thing out right away–autism prevalence studies undercount. Not all autistics are diagnosed. That’s just a fact. Consider the recent CDC study. They look at school and medical records. In many cases, they find children are autistic based on their records–but the schools and doctors hadn’t diagnosed those children.

Combining data from all 11 sites, 81% of boys had a previous ASD classification on record, compared with 75% of girls (OR = 1.4; p<0.01).

Yeah, more than 20% of the kids counted in their prevalence had no diagnosis. They and their families didn’t know.

And, if there isn’t enough in the records to show a kid is autistic? That kid gets uncounted altogether.

So, when people look at the CDC prevalence estimates from over the years and cry “epidemic”, well, there’s a reason why those people usually have some causation theory that they believe in. The irony is that they are usually wrong that their theory needs an epidemic to support it. But, heavily biased people are not usually the best sources of reliable analyses.

What would be a better method of counting how many autistics are in a population? Sounds obvious–test all the kids in a given population. Equally obvious–this is a much more expensive and difficult task. One such study was published in 2011. Yes, 7 years ago. In Prevalence of autism spectrum disorders in a total population sample, the autism prevalence in Korea was found to be 2.63%. A study performed in South Carolina and reported at IMFAR last year found a prevalence of 3.62%.

This all said, we had another autism prevalence come out this week–The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children. This study found a prevalence of 2.5%.

Now here’s a nice thing about this recent study–OK, two nice things. First, they don’t just look at kids of one age. Second, you can obtain the data. Which I did. Let’s look at the autism prevalence broken down by birth year.

Do you see autism prevalence increasing with birth year? I don’t. I see some scatter, but in general the autism prevalence is about 2.5% from birth year 2000 to 2010. For what it’s worth–the scatter is due to the small numbers of kids in each year making the value uncertain. It’s statistical noise.

If you are wondering about how the autism prevalence drops off above birth year 2010, keep this in mind: kids aren’t diagnosed at birth. In the CDC study, 1/2 of the kids didn’t get diagnosed until after 52 months (4 years 4 months) of age. For this type of reason, the more recent study didn’t count kids under 3 years of age.

People are very fond of graphing autism prevalence data from various years and claiming these are accurate, full counts of autism prevalence (they aren’t) and, from that, claiming an epidemic. Here are the CDC data:

The numbers go up. Steadily up. I’d have to be a total denialist to not see that as evidence of an epidemic, right?

Consider this–the CDC autism prevalence for birth year 2000 is 1.1%. The study just out gives an autism prevalence more than double that (2.9%). For the same birth year. Both are good studies, for what they are. Both are limited. But, for one thing, the CDC study was performed in 2008. 10 years ago. Since then a lot has changed. For one thing, the kids got older and had more chances to get diagnosed. They didn’t just suddenly become autistic in the past 10 years.

So, yeah, we have an autism prevalence estimate of 2.5%. I’m not surprised and I’m not taking this as evidence of an epidemic.

The unfortunate thing in this discussion is that with all the work in this study, all the potential for advocacy, the only number that usually gets discussed is the overall prevalence. Watch the video abstract (which I can’t get to embed). One of the authors goes into a lot of detail about the other findings. Findings I hope to discuss soon.

//players.brightcove.net/1327978102001/rkA3rSifl_default/index.html?videoId=5839990273001

By Matt Carey

One line from the CDC Autism Prevalence report you will likely never see quoted

28 Apr

The CDC came out with an autism prevalence estimate a few days ago. There have been a number of news stories on the subject and the usual attempts by credulous websites to use this to claim that vaccines cause autism.

It’s right there at the top, in the interpretations section of the abstract:

Because the ADDM sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States

The Age of Autism blog (as noted already, always a good place to look for people getting it wrong on autism) ran a piece “Breaking News: 1 in 59 children Born in 2006 have Autism, 1 in 36 between the ages of 3 and 17. What’s going on?” Because, you know, claiming an epidemic is in their mission statement.

SafeMinds, another organization promoting the failed “vaccine-induced-epidemic” idea of autism wrote:

Baltimore, MD, April 26, 2018 – SafeMinds, along with other national autism advocacy organizations, sent a letter today to Department of Health and Human Services (HHS) officials demanding a meeting within the next 30 days to discuss the creation of a Federal Autism Strategic Plan to address the nation’s autism crisis. The urgent letter follows the release of a report this afternoon by the U.S. Centers for Disease Control (CDC). The CDC report found that autism is now diagnosed in one in every 59 American children, representing 2 ½ times more autism in 12 years and a 15 percent increase in just two years.

First, there is an Autism Strategic Plan. A member of SafeMinds helped craft it with HHS while she was on the Interagency Autism Coordinating Committee. She voluntarily decided not to pursue another term on the IACC.

Second, your reason is that ” The CDC report found that autism is now diagnosed in one in every 59 American children”. The CDC told you explicitly in the first few paragraphs that can’t be said.

But I do appreciate that you are implying no epidemic among children. You clearly state that the rate is the same for all American children, not just the 8-year old children of the CDC study. Or did you miss that important point?

So, good luck with that letter. I’m sure your readership will not notice the problems with your logic, but HHS will.

There are more examples, but these make the point.


By Matt Carey

Did autism prevalence increase by 20%? (answer: no)

28 Apr

The CDC came out with a new autism prevalence estimate yesterday. Their estimated autism prevalence is 1.68%.  That’s up from the estimate from 2 years ago (1.46%), but lower than a different recent study (2.76%).

I’m going to discuss some minor-league shenanigans.  It’s no surprise that some groups abuse facts and cherry pick data to make political points.  In this case it was useless.  there was no need to cherry pick.  I’ve done a lot of exposing the abuse of facts by some so-called autism advocacy groups.  I don’t get any joy from noting that people in my community are both dishonest and ignorant of science.  But much as that bothers me, it pales in comparison to the lost opportunities.  Millions of dollars were spent on this prevalence estimate alone, but all some groups do is dig for reasons to justify their “epidemic” story and push the long-ago failed idea that vaccines are to blame.

Over the years, news organizations and autism groups have jumped at the chance to put their spin on each new CDC autism prevalence estimate. Over the years I’ve spent a lot of time trying to unspin the takes of groups like the Age of Autism blog. AoA is, well…if you want to see autism done wrong, read the Age of Autism blog. Science, medicine, human rights and dignity, they can be counted upon to get things wrong.

With that in mind I decided the CDC announcement was a time to break my current trend of ignoring AoA. I literally haven’t read it in months. What I saw was both surprising and typical for them. Surprising in that they didn’t even bother to write their own pieces for the new prevalence numbers. Seriously–they just copied a couple of articles from other sites and left it at that.

By the way–this new low-level interest in autism prevalence appears to me to be a general trend–beyond just AoA. Autism is losing it’s status as having intense focus from the US media and public.  The chance to leverage the public’s interest into meaningul change is waning. That’s a far more interesting topic and far more important than this and I want to come back to it in the future.

So, what did AoA post? Big League Politics BREAKING: CDC Reports 20 Percent Autism Increase In Children and Breaking News: 1 in 59 children Born in 2006 have Autism, 1 in 36 between the ages of 3 and 17. What’s going on?. That first one caught my eye. First because in absolute terms, the autism prevalence increased by 0.22%. In relative terms, that’s about a 15% increase.  They could have said 15% and made their point, but why do that when 20% is even more scary?  More to the point–digging just a little into this 20% figure gives understanding that a true advocacy organization could use.

So how did they come to the idea that the autism prevalence increased by 20%? They skipped to page 13 and took one part of one paragraph out of context and, well, cherry picked. Completely unsurprising. They skipped over pages of data showing that we are failing to identify–and, therefore provide adequate services for–autistic minority children.

Sadly, AoA and their allies have spent over a decade denying this huge issue.   The reason is obvious: it doesn’t fit into the “vaccines cause autism” narrative.  So rather than push for better identification and better services for minorities, they’ve sacrificed these communities in for their political message.

It’s disgusting.

They didn’t dig any deeper into these numbers, even though the data were right in front of them. Also completely unsurprising. If they were the sort of people who dig into data and question, they wouldn’t be pushing the idea that vaccines cause autism.   Seriously.

Here’s the section they are relying upon:

Among the six ADDM sites completing both the 2012 and 2014 studies for the same geographic area, all six showed higher ASD prevalence estimates for 2012 compared to 2014, with a nearly 10% higher prevalence in Georgia (p = 0.06) and Maryland (p = 0.35), 19% in New Jersey (p<0.01), 22% in Missouri (p = 0.01), 29% in Colorado (p<0.01), and 31% in Wisconsin (p<0.01). When combining data from these six sites, ASD prevalence estimates for 2014 were 20% higher for 2014 compared to 2012 (p<0.01).

So, if you only pick the states where there were data in both this study (called 2014 because that’s when the data were collected to be analyzed) and the previous (2012) study, you get about a 20% increase (click to enlarge).

But what happens if you ask “why?”  As in, why do these states show a larger increase than the entire group?

I put some numbers in red and bolded them for emphasis. Those are states with lower than average autism prevalences. Take a moment to think about that–the states with low autism prevalences are showing larger prevalence increases than other states. Start with a low number, and you are bound to get bigger percentage increases.

Missouri, Colorado and Wisconsin started out with very low identification rates.  They’ve improved their identification rates. What if someone were to ask, “how did they do that?  Can we use that elsewhere to serve more unidentified autistic children?”

I’m sure the cherry-picking “let’s find a reason to fit this into the vaccines-cause-autism story” groups have already focused on New Jersey in the above figure.  New Jersey stands out–their autism rate increased by about 19% and they have a much higher autism prevalence rate. New Jersey also stands out for another reason: they aren’t lagging in identifying black or Hispanic autistic children:

In New Jersey, there was almost no difference in ASD prevalence estimates among white, black, and Hispanic children. Estimates for Asian/Pacific Islander children ranged from 7.9 per 1,000 (Colorado) to 19.2 per 1,000 (New Jersey) with notably wide CIs.

Wouldn’t it be great if someone were to say, “how did New Jersey close the gap in identifying some minority groups?”

Groups advocating for a better future for disabled people would do that.  People trying to keep the failed “it’s all vaccines fault” idea alive won’t.

Some people will be confused, and understandably so, at this point.  These are “autism prevalence” numbers.  Doesn’t that mean that this is a complete and accurate count of the number of autistic kids in each location?  No, they aren’t.  The people at the CDC are working hard and doing a good job with the information they have.  But this is a review of existing records, not a test of each individual kid.  The CDC have access to medical and/or school records (it varies by location what sort of records they have).

Keep in mind–the CDC autism prevalence numbers aren’t “these are the absolute accurate numbers for how many kids are autistic”. We are missing identifying kids. Doctors are missing autistic kids.  Schools are missing autistic kids. The CDC tries to make up for this by reviewing the records to determine which kids are autistic (i.e. they don’t just count existing diagnoses in the records–they “diagnose” from the records).  But they still miss kids in their counts. We need to get better. The fact that New Jersey isn’t leaving minority kids behind is huge.  The fact that lagging states are catching up is huge.

Doing things right–checking on numbers is hard. It takes time. AoA not only doesn’t take the time to be careful (which is typical for the “vaccines cause autism” groups), they know that it’s the simple message that scares people. “Autism increased by 20%”!!!! It may only take 5 minutes to actually dig and see what’s going on. But that’s five minutes most people don’t have time for.

Which is the long winded way to say:

A lie can travel halfway around the world before the truth can get its boots on

Groups like AoA live and breathe on taking advantage of that.  They were fake news long before the term was coined.

That said, I knew with the new autism prevalence numbers people would misuse them. It’s pretty obvious.  They’ve used that misinformation to drag parents into a world of guilt and shame for being part of vaccine injuries that, in at least the vast majority of cases, didn’t happen.  Even more, the autism-is-a-vaccine epidemic community had the resources for over a decade to make a real difference in the lives of autsitic people. As we watch autism fade a bit from the public’s view, it’s difficult to not cry a bit for the lost opportunity. It’s that, not their failed logic or twisted facts that is why I wrote the above.

By Matt Carey

Americans are still failing to identify and serve minority autistic children

27 Apr

The CDC recently published another autism prevalence study. It’s 23 pages long and has 26 authors, took 2 years to put together and no doubt cost millions of dollars. Out of that, the one fact from it that will be quoted is simply–the autism rate is now at 1.68%, or 1 in 59.

There’s so much more. But sometimes focusing on one simple message makes more impact than a lengthy analysis. So I’ll pick my own simple message (of my own):

we are failing to identify minority autistic children. And with that, we are failing to provide them the appropriate services and supports they deserve as citizens and residents of the U.S.

We can and we should do better.

Here is table 3 from the report:

The estimated autism prevalence for Hispanics is 1.4%. For Whites, it is 1.7%. Thousands of Hispanics and other minorities are being missed. Overall, thousands of autistic children, and many, many more adults, are being missed. But that’s another discussion.

By Matt Carey

If you are using California data to claim an autism epidemic, you’re doing it wrong. Or:The great anti-epidemic of intellectual disability in California.

22 May

If you’ve been reading about autism online, you have almost certainly read that autism “rates” are on the rise. But what if I told you that here in California intellectual disability has been dropping for over 20 years?

For many years the mainstay of the “autism is an epidemic” idea was the California Department of Developmental Services data. The CDDS keeps track of how many Californians are getting support under a number of specific disability categories. These data are publicly available (although not as easily available in the past), which makes them an easy source of data.

It’s easy to take a cursory look at the CDDS data and think “these are official data. Look at how much autism has increased!” Or claim “the CDDS only serves “severe” autism, there’s no way they were missed in the past.” You can even find a few publications to cite to back up these observations.

About a year ago I asked CDDS for some data. I hadn’t checked in a while and I wanted to see what trends are ongoing. Coincidentally, the Autism Society of San Francisco put out a report shortly after that: Autism Rising, A Report on the Increasing Autism Rates in California. So I was not alone in asking for data.  The Autism Society of San Francisco made the argument that the CDDS data are accurate and show an epidemic.

The Autism Society of San Francisco graph the data in many different ways, but the one that was closest to the way I was looking at the data was in Figure 5 (click to enlarge):

AS-SF Autism Rising Figure 5

and here is the caption for Figure 5:

Births of individuals later deemed to have DDS-eligible autism have been increasing sharply every year since the early 1980s. Typically intake into the system occurs between 2 and 7 years of age. The data reflects about 200 DDS autism births per year into the 1980s, but now the system is reflecting nearly 5,000 such births per year. The drop off in cases after birth year 2008 is likely attributable to usual delay in cases entering the system, and likely does not represent an actual decrease in DDS-eligible autism cases.

You can stop there and support your argument. And that’s just what most people do. Or you can question–how can I test if this is a “real” autism increase? For example, is the autism rate the same among different races? The answer is no. Is the autism rate the same in, say, San Francisco, Los Angeles, and Kern County? The answer is no. And there are many more questions one can ask of these data and over and over, the answer is no.

Either we aren’t counting all the autistics in our state, or there is something much more complex going on than vaccine, toxins, epigenetics, or whatever the claimed causes of the rise are. And I’ve gone through many of these discussions over the years. Let’s make this simple then. If one claims that the CDDS counts everyone within each disability category accurately and that the definitions they use aren’t changing with time, why is intellectual disability (mental retardation) dropping so fast in California?

You see I also graphed intellectual disability. I got autism counts, intellectual disability counts and “unduplicated” (total, each disabled person counted once) by birth year. I also got census data by birth year. And I graphed them. And anyone claiming CDDS data show an autism epidemic needs to do the same and to explain this graph, complete with the sharp peak for birth year 1993. (click to enlarge):

CDDS including ID

Intellectual disability has dropped. Off about 40% of the peak value.

If you think your idea for the rise in autism is correct, let’s take the failed vaccine idea as an example, you need to also explain how that resulted in far fewer people with intellectual disability. Plain and simple. And none of these claimed causes of an “epidemic” can explain the drop in ID.

Why bother challenging the people claiming an autism epidemic? Because it denies the existence of undiagnosed autistic adults. We have very little effort to identify those who were missed in past generations. And the likelihood is that these people–our people–are not being supported appropriately because of their misdiagnoses. And not only are we abandoning the misdiagnosed, we are failing to learn. What worked for past generations, the adults of today? What failed? What are the appropriate supports for the various needs of autistic adults? We don’t know today. And are unlikely to know by the time my kid is an adult, especially if we aren’t even looking at autistic adult needs today.

And then there’s the whole autism causation question. People spending their time trying to correlate CDDS data–data clearly confounded by numerous social influences–are unlikely to ever find a real answer.

But, for those who want to keep trying, include all the data. Give an explanation for this and you may be on to something.

CDDS including ID

By Matt Carey

Mark Blaxill on the Geiers: they do sloppy work

13 Oct

Mark Geier and, more recently, his son David have been active promoting autism as vaccine injury for over 10 years (Mark Geier has been active as an expert in, and been criticized for his lack of quality work, the vaccine court on non-autism issues for about 20 years). They have written multiple papers, ranging from bad to worse, attempting to argue the case that vaccines (and especially thimerosal) are a primary cause of autism.

There are multiple discussions over the years of the Geiers here on Left Brain/Right Brain, Respectful Insolence as well as many other places. The best work was done by Kathleen Seidel at Neurodiversity.com, but due to a server crash much of that content is not readily available. (although it is worth searching for the cached versions or the versions on the Wayback Machine).

The work of the Geiers is so poor that it has always been a wonder to me that no criticism has come from anyone promoting the idea that vaccines caused an epidemic of autism. It isn’t that those promoting the vaccine-epidemic idea are not bright, leaving me wondering if they are too biased by their beliefs or just unwilling to speak publicly against an ally. But, recall, these are the same people who closed ranks around Andrew Wakefield in the face of clear and proved ethical violations.

If we are to believe Jake Crosby, former writer for the Age of Autism blog, it appears that the tacit approval of the Geiers has, at least in part, been a case of “circle the wagons”. I.e. people defending an ally over speak their opinions. Mr. Crosby has blaxillwilliams and quotes more emails where Mark Blaxill (former board member of SafeMinds and a long-time proponent of the idea that mercury in vaccines are a primary cause of autism) expresses his views about the Geiers to Mike Williams (attorney involved representing the families in the Omnibus Autism Proceeding).

In an email image on Mr. Crosby’s blog, Mr. Blaxill is reported to have stated:

In the interest of full disclosure. I thought you might like to see my critique of the Geiers’ latest work on VSD. I have not been a big fan of the Geiers. I worry they do not represent our side well. They do sloppy work.

In another email (quoted by Mr. Crosby, the link to the original is nonfunctioning) quotes Mr. Blaxill as stating:

“As to the Geiers, I may be a bit of a minority voice here, but I worry very much that they can do our cause more harm than good. They are not very good scientists, write bad papers (both writing badly and reporting in sloppy fashion) and attract too much attention to themselves as individuals. In this last regard, they don’t show nearly as well as Andy Wakefield but they’re trying to play the same role. Frankly, if I were on the other side and were asked to critique their work, I could rip it to shreds. I’m surprised they haven’t been hit harder. So I think you are wise to diversify.”

Mr. Crosby’s stance is that this constitutes “interference” in the Omnibus Autism Proceeding. I.e. Mr. Crosby seems to imply that the Geiers are not sloppy scientists whose work is poor, but that the Geiers should have been allowed a more active role in the Omnibus.

In this case I find myself agreeing, in part at least, with Mr. Blaxill. The work by the Geiers is poor. Where I don’t agree is Mr. Blaxill’s decision to hold back on making those statement public. Not just because it’s hard to take the stance that one is a only “…interested in the quest for the truth” when one holds back on key information like an entire critique of the Geiers’ VSD paper. No. It goes deeper than that. The Geiers’ junk science went beyond promotion of the idea that thimerosal is a primary cause of autism. The Geiers ran a clinic for many years. Mark Geier was a licensed physician, David Geier worked in the clinic (and has been accused of practicing medicine without a license). Through their papers and their talks at autism parent conventions like AutismOne, the Geiers became well known. One of the “brand name” autism clinics. They reached this level of respect within their community because no one within that community dared to speak out.

I’ve noted on Left Brain/Right Brain many times before that these parent conventions differ markedly from real science conferences in that no one ever seriously challenges the speakers. They can present almost any theory or idea, especially if they tie it to autism as vaccine injury, without anyone standing up and saying, “that makes zero sense”. These aren’t science presentations, they are advertisements. It would be interesting to see how many of these conventions Mr. Blaxill attended and yet remained silent on the “sloppy” work that could be “ripp[ed] to shreds” that the Geiers presented. Instead, parents were presented a view that the Geiers were good scientists who suffered unjust criticism for their “brave” stance on vaccines.

The Geiers were promoters of chelation as a treatment for autism. Not only does chelation have no scientific basis to be an autism treatment, a study just out this week using rodents states that chelation could be harmful if there is no real heavy metal toxicity:

Finally, we also found that succimer treatment produced lasting adverse neurobehavioral effects when administered to non-lead-exposed rodents, highlighting the potential risks of administering succimer or other metal-chelating agents to children who do not have elevated tissue lead levels. It is of significant concern that this type of therapy has been advocated for treating autism.

It is highly likely that Mr. Blaxill would disagree with the statement that chelation has no good scientific basis as a treatment for autism. He’d be wrong, but that’s been covered over and over before. The Geiers moved on from standard chelation to stranger, more dangerous therapies. As an aside, if chelation was a successful treatment one has to wonder why the Geiers were prompted to move on to using Lupron as an autism treatment. Lupron is very serious medicine and it shuts down sex hormone production in the body. Why Lupron, one might ask? The Geiers convinced themselves (or convinced themselves that they could pass off this explanation) that mercury bound itself to testosterone in the brain, making it hard to chelate. They cited a paper showing that if one heats testosterone and mercury salts in benzene, one could form these mercury/testosterone complexes. They actually claim (yes, they tried to patent this idea to make money off it) that this paper shows that “It is known in the art that mercuric chloride binds arid forms a complex with testosterone in subjects”. The “subjects” are beakers of benzene, not animals and not people. Add to that the lack of an explanation of how shutting down hormone production would break up these complexes. The Geier “science” supporting Lupron would be laughably bad if it wasn’t used to subject disabled children to Lupron injections.

Lupron clearly has no basis as an autism therapy. In fact, the “lupron protocol” played a major part in Mark Geier losing his medical licenses. One has to ask, how did the get such traction for such an obviously bad idea? For one thing, the Geiers were considered respected scientists in the vaccine injury/alternative medicine autism community due to their previous and ongoing work trying to link thimerosal and autism. Work which Mark Blaxill considered “sloppy” and worthy of being ripped to shreds. But instead of sharing his views on the Geier papers with the public, Mr. Blaxill shared them privately within his own circle.

It’s worth noting that the email quoted above was written before the “Lupron Protocol” was developed. We don’t know if Mr. Blaxill was alarmed by the emergence of the “Lupron Protocol”. I can’t find where he spoke out against it. We can see that his blog (under a different writer) promoted the idea as “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!“. Mr. Blaxill doesn’t seem to have commented there. For all the papers the Geiers have published, Mr. Blaxill only mentions them once in his book “Age of Autism. But as we’ve seen, tacit approval (silence) may not be the same thing as real approval.

Mr. Blaxill had the courage to testify before a congressional hearing last year. A hearing where the politicians had been lobbied in advance to be favorable to his cause. When it came to disagreeing with one of his allies, that courage was lacking. He allowed “sloppy” science from an ally to go unchallenged. An example of the fallout of such a decision, in my opinion had he stood up he could have slowed or even stopped the “Lupron Protocol”, a therapy which in my opinion amounts to the abusive treatment of disabled children in an uncontrolled and unapproved experiment.


By Matt Carey

Autism, Denmark and again no link with vaccines.

25 Aug

For a while now, I’ve been hoping that someone would publish data on the current state autism prevalence by birth year in Denmark. Denmark has been used for epidemiological studies for autism since their is a national database for health care. Thus, one can obtain a count of all people in Denmark who have been diagnosed with autism. Which is not the same thing as saying they have a count of all people in the country who are autistic. One can be autistic and not be diagnosed, as we will see.

A recent study using the Danish database is Recurrence of Autism Spectrum Disorders in Full- and Half-Siblings and Trends Over Time: A Population-Based Cohort Study. It’s an interesting study and I feel somewhat guilty for pulling the time-trend data out for my own discussion. In short, the study found that if a family has one child who is autistic, the chance for a subsequent child to be autistic is about 7 times higher than for families without an autistic child. This is fairly consistent with many other sibling studies over the years, but much lower than found in the recent baby siblings study out of the MIND Institute. That might be due to the active surveillance used by the team at MIND. I.e. they were actively monitoring and testing baby siblings.

Much more, they conclude:

Although the results from our comparison of recurrence in full- and half-siblings support the role of genetics in ASDs, the significant recurrence in maternal half-siblings may support the idea of a contributing role of factors associated with pregnancy and the maternal intrauterine environment. Finally, the lack of a time trend in the relative recurrence risk in our data suggests that the likely combination of genetic and environmental factors contributes to the risk for ASD recurrence in siblings or that the risk for recurrence because of such factors has not been affected by the rise in the ASD prevalence.

Very interesting–whatever is behind the higher prevalence among younger siblings, it seems to be the same today as 30 years ago.

What’s the overall prevalence of autism in Denmark according to this study? For childhood autism, they report 0.3%. For all ASD’s, 1.2%.

Autism, we are told by those promoting the autism/vaccine link, is unmistakable. Each autism prevalence report is not an estimate, but an accurate count of every autsitic because there is no way to miss an autistic. Back in the day, Rick Rollens was a constant fixture in the news on autism. He was a strong proponent of the idea that one could not miss autism:

WATSON:
Like many parents, Rick is convinced that Russell was damaged by a series of vaccinations. He strongly rejects the idea that the epidemic of autism can be entirely explained by poor diagnosis in the past because numbers have rose over the last few years.

ROLLENS:
Missing child with autism is like missing a train wreck. For us now to now think that somehow we have better identified a child who can’t talk, who has repetitive behaviour. Who makes no eye contact. Who is self- involved and in many cases self-abusive just defies logic.

Mr. Rollens was wrong on two counts (leaving aside his inflammatory and derogatory language). First, autism is not just the child who can not talk, self-involved and self-abusive. Second, yes, a lot of autistics have been missed. We’ve seen that time and time again. Look at the same population at different times and the later study will have found more autistics. An this goes for autistics with intellectual disability, as shown in the recent UCLA/Utah autism followup: “Today’s diagnostic criteria applied to participants ascertained in the 1980s identified more cases of autism with intellectual disability. ”

But, what about Denmark? A study from 10 years ago looked at autism incidence following the removal of thimerosal in Denmark in 1992. Thimerosal and the occurrence of autism: negative ecological evidence from Danish population-based data

In that study they found 956 children born in their study period who were diagnosed with autism by 2000:

A total of 956 children with a male to female ratio of 3.5:1 had been diagnosed with autism during the period 1971–2000.

The current Denmark study included individuals diagnosed until the end of 2010. I.e. there were 10 more years of followup. In those 10 years a lot more people were diagnosed. Where there were 956 diagnosed with autism by 2000 (for birth years 1971 to 2000), 2321 were diagnosed by 2010. That’s an increase of 240%. And the new study focused on birth years 1980 to 1999. I.e. the entire 1970’s birth cohort is not included in this count, and they still found over twice as many autistics. Where were they in 2000, when the previous study was performed? Living in Denmark, not identified as autistic.

There are a few factors which are likely behind this increase, but here we have a great example of “increased awareness” affecting autism prevalence.

And, those numbers were for childhood autism. For ASD, the increase is even larger. 10,377 Danes had an autism spectrum disorder diagnosis (for birth years 1980-1999) in the new study (the previous study included none). That’s a whopping 1080% increase. Again, there are a few reasons for this (including the increased awareness above), but here’s what “expanding the definition” does to autism.

Those increases would be an “epidemic” to some if it weren’t for the fact that those autistic Danes were there all along. They just weren’t diagnosed in 2000.

For many years, groups touting the idea that vaccines cause autism have pointed to Denmark as part of their argument. Denmark uses fewer vaccines than the U.S.. Generation Rescue used to have this on their website discussion of vaccines:

Comment: Denmark is a first world country based in Western Europe. Their schedule appears far more reasonable than ours. They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

What was that Danish vaccine schedule that Generation Rescue recommended?

DTaP at 3, 5 and 12 months
Hib at 3, 5 and 12 months
IPV at 3, 5 and 12 months, plus 5 years
MMR at 15 months and 12 years

No mercury (Denmark phased that out in 1992). No birth dose of Hepatitis B. Fewer vaccines overall than in the U.S.. And the same autism prevalence of about 1%.

If you dive into more details, it gets even worse for the vaccines and/or thimerosal cause autism argument. Let’s look at the prevalence as a function of birth year for childhood autism and ASD from the recent study:

AutismPrevalenceDenmark

Consider this statement from a previous study:

This means that children who followed the full vaccination program during the period 1961–1970 had received a total of 400 g of thimerosal or 200 g of ethyl mercury by the age of 15 months and during the period 1970–1992 they had received a total of 250 g of thimerosal or 125 g of ethyl mercury at 10 months of age. In March 1992 the last batch of thimerosalcontaining vaccine was released and distributed from Statens Serum Institut in Denmark.

The thimerosal exposure was higher prior to 1992 than after. But the prevalence of both childhood autism and ASD is higher after the removal of thimerosal. This is the same result as shown in the 2003 study. The number of vaccines seems to be constant over this time period, so number of vaccines/aluminum/too-many-too-soon or other arguments don’t work either.

How about taking just a single year. The prevalence for ASD in 1996-97 was 1.4%. What is the autism prevalence in the U.S. for that year? To answer accurately, I’d contend we need a count today, not an old one. But people promoting the idea that vaccines cause autism take the CDC reports as absolute measures of autism, comparing each report and telling us all about the epidemic. So, let’s take the CDC number for kids born in 1994: 0.8%. That study was reported in 2009.

So, we have 1.4% in Denmark and 0.8%, nearly half the Danish prevalence, in the U.S.. Denmark had no thimerosal, no Hepatitis B shot (birth or otherwise), fewer vaccines and less aluminum exposure. And much higher reported autism prevalence.

Oddly enough, even though there have been many prevalence studies out of Denmark, Tomljenovic and Shaw didn’t include Denmark in their study “Do aluminum vaccine adjuvants contribute to the rising prevalence of autism?” My guess is that Denmark didn’t fit their conclusion then, and, like Iceland, would make their analysis fall apart now. It is even more odd that Tomljenovic and Shaw didn’t use Denmark as Denmark was used in a faux-study put out by Generation Rescue. In AUTISM AND VACCINES AROUND THE WORLD: Vaccine Schedules, Autism Rates, and Under 5 Mortality Someone at Generation Rescue made the first attempt at the sleight of hand of comparing the autism prevalence in various countries vs their vaccine schedules. At that time, 2009, Generation Rescue claimed that the autism prevalence in Denmark was 1 in 2,200, misrepresenting the 2003 study discussed here. The raw prevalence in this 2008 study was 0.65% or about 1 in 153. That value didn’t fit the thesis that the Generation Rescue author wanted to convey.

One argument found on the internet is that the 2003 Denmark paper fudged the results by clipping the last years off the data presented. An email involving people involved in the study is quoted as saying, “But the incidence and prevalence are still decreasing in 2001“. Oh, my, we are told, the autism prevalence and incidence actually went down after the removal of thimerosal!

But, it didn’t. The prevalence of childhood autism (basically what was studied in the 2003 paper) in Denmark is flat from birth cohorts 1996-2004. Flat. The prevalence of ASD’s do see a decline. That must be it! Evidence that thimerosal was causing autism in Denmark! But it isn’t. The prevalence of ASD in 2003-04 is the same as that in 1990-91, before thimerosal was removed. Why does the ASD prevalence go down? We can’t say for sure, but my strong suspicion is that it’s the same reason why the authors in 2003 were seeing a decrease: too few years of follow up. Autistic kids are typically diagnosed earlier than those with other ASD’s, but the average age was about 5 in Denmark in 2003 (as I recall). ASD kids can have an average age of diagnosis of 8. Recall that the recently released study followed kids up to the end of 2010. It’s no surprise to me that the estimated prevalence for ASD kids born in 2002 is lower than that for kids born in 2000 in this study. And this is consistent with the flat prevalence for kids with childhood autism diagnoses, as they are typically diagnosed earlier and 8-9 years would be enough to find the majority of the autistics in that population.

What about the idea that there’s a “changepoint” in the autism prevalence in Denmark and California pointing to some event in the late 1980s that’s contributing to autism prevalence? For one thing, the present study notes that the recurrence risk doesn’t change with time, so that’s good evidence against such an idea. There is no changepoint in the California data in the 1980’s, as it is exponential and fitting it to two straight lines is just a mistake. What about the prevalence data just released? The data are not finely spaced in birth years, in my opinion, to give a good idea of any “changepoints” in the 1980’s. But there is a changepoint of sorts in the childhood autism data in the 1990’s. The data plateaus at about 1996. But, as already noted, this doesn’t coincide with anything related to vaccines. The ASD prevalence appears to peak at about 1994, but, again, this doesn’t coincide with vaccine events and, I suspect, results largely from lack of follow up for the kids in the later birth years.

How about the MMR vaccine? MMR uptake for young children (MMR1) was basically flat from 1987-1997. Uptake rose somewhat after that. So, during the period that the estimated prevalence was increasing, MMR uptake was basically flat. During the time that the estimated prevalence was either flat (childhood autism) or decreasing (ASD’s), the MMR uptake was increasing. So if we were to play the “correlation equals causation” game, MMR prevents autism. (two notes, preventing rubella infections most likely does prevent some autism and the link above shows a nice example of rubella infections going down after MMR was introduced in 1987. The two points are not linked because most women in Denmark who were infected with rubella before 18 weeks gestation chose abortion, resulting in a low congenital rubella syndrome prevalence).

How about the “fetal cells in vaccines cause autism” argument? It’s one without biological plausibility, but then so was the thimerosal idea. I’d be interested in seeing how the vaccines were produced in Denmark in the 1990’s, but at present, the MMR vaccine there is developed using chicken eggs, not fetal cell lines. And they don’t routinely vaccinate against chickenpox, another vaccine in the U.S. using fetal cell lines. It looks like at least as far back as 1999 they were using egg-based vaccine production for MMR.

So, it appears we have a country with no vaccines grown in fetal cell lines with an autism prevalence as high or higher than that in the U.S.. In other words, the “vaccines from fetal cell lines caused the ‘autism epidemic’ theory” also appears to be debunked by the Denmark data.

In case you are looking for correlations with the vaccine program, here’s the history in Denmark.

So, how about the rise in estimated prevalence in the 1980’s. Is it “real”, as in does it represent an actual increase in the fraction of autistics in the population? It’s a good question and one which could be answered by performing a real study of autism prevalence in adults. The sort of study I and others have called for in the U.S., but that most autism-parent advocacy groups have refused to support. Such a study would not only answer the question of the prevalence, but it would give us valuable data on what has led to success and failure among the autistic adult population.

For those promoting the idea that environmental mercury emissions are a factor in the increase of autism rates, if you have data for Denmark, I’d love to see it. In the U.S., environmental mercury emissions dropped by over 50% in the 1990’s.

Lastly, let’s discuss a comment statement one will read or hear. It goes something like “the autism prevalence was 1 in 10,000 in 1980 and it’s 1 in 1,000 today”. This involves a number of sleights of hand. First, the autism prevalence wasn’t 1 in 10,000 in 1980. It was a few in 10,000 (Wing and Gould reported about 5/10,000). Doesn’t sound like a big deal, but when people start taking ratios (it went up a gazillion percent) a factor of 2 or 3 in the denominator makes a difference. Second, this was the estimated prevalence based on the number of autistics diagnosed at the time. As shown above, the childhood autism prevalence estimate for Denmark in the 1980’s increased by 240% in the past decade. This was not a real increase, but better identification. Third, the comparison is between autism (childhood autism, DSM-III autism or some other restrictive definition) vs. autism spectrum disorders. Also shown above was that the prevalence of ASD’s in the 1980’s increased by a factor of 10, increasing only in the past 10 years.

A factor of 10 in the numerator, a factor of 3 or 4 in the denominator and pretty soon you are talking about a big part of the increases observed.

In the end, none of the above arguments are that new. Or, to put it better, none of the vaccines-cause-autism arguments had much real support. The mercury idea has lost much of the support it had 10 years ago in the parent community, but it persists. The aluminum in vaccines idea has risen to try to take the place of the mercury hypothesis, but it is based on the exact same smoke and mirrors. The idea that the increase in autism is due to the MMR has been scientifically dead for years. And, yet, these ideas persist. And they cause harm, both to the community at large and to the autism community.


Matt Carey

The Amish may not be a great population for a vaccinated/unvaccinated study

10 Aug

The recent attempt to legislate brought back the subject of the Amish, vaccination and autism. It’s an old idea, made popular by a journalist whose work was, shall we say, less than complete.

House Resolution 1757 (still stuck in committee) states:

” Target Populations- The Secretary shall seek to include in the study under this section populations in the United States that have traditionally remained unvaccinated for religious or other reasons, which populations may include Old Order Amish…”

Whenever the Amish are brought forward as a population for vaccinated/unvaccinated studies, people present many reasons why such an idea lacks rigor.

1) The Amish do vaccinate. They have no prohibition against vaccination. (i.e. the statement that “because the Amish have a religious exemption from vaccination” is incorrect).

2) “The” Amish is a bit of a misnomer. Amish is more of a plural, as in a group of basically island populations which have been developing somewhat independently genetically for a few hundred years.

3) Talking about studying the Amish as though one has the right to just force them to submit is very disrespectful. And a bad assumption. One does not tell a community that they have to be study subjects. One asks. The Amish may very well not want the entire population screened for autism.

There are more arguments. Valid arguments. But without some cold, hard, numbers the response that usually comes up is, “Ah, you are afraid of what we will find!”

No, if one is going to do a study, one should be rigorous. One should get as close to the correct answer as possible. Studying the Amish as an “unvaccinated” population with “no” (or little) autistic subpopulation is to start out with little chance for success.

But how about some cold, hard numbers (I mean, beside from the fact that the Amish vaccinate and there are autistic Amish).

Here’s a talk presented this summer by the DDC Clinic in Ohio. This clinic is following the model of the cleverly hidden “Clinic For Special Children” that a certain journalist failed to contact before publishing his conclusions. In the description of the Clinic you will find:

A 501(c) (3) non-profit organization located in
Middlefield of Ohio, Geauga Amish settlement
• Total population ~95,000, Amish ~14,000 (15%)
• 50% of developmental disabilities are from Amish
• One hour (but a world) away from world class healthcare

Yes, they are 15% of the local population but account for about 50% of the developmentally disabled population for their community.

In other words, the prevalence of developmental disability is more than five times that of the general population.

Do you still want to compare this population for long term health outcomes and vaccination status? Do you want to say, “hey, here’s a population that doesn’t vaccinate and they have more developmental disability than the rest of the population?”

That’s what people have been pointing out for years in stating that genetically the Amish are somewhat distinct from the rest of the U.S. population. The proposed study will run into big problems.

Why does the Clinic for Special Children (and similar clinics) exist? They aren’t just there because the Amish are likely to be underserved in general since they lack insurance (which, I’ve been told, is something the Amish avoid). The Clinic’s mission statement is:

The Clinic for Special Children was established in 1989 as a non-profit medical service for Amish and Mennonite children with genetic disorders. The Clinic serves children by translating advances in genetics into timely diagnoses and accessible, comprehensive medical care, and by developing better understanding of heritable diseases.

Again, they are a small, island-like population. Many genetic conditions are more common in their communities. Many are metabolic conditions. (Dr. Morton’s talk at the conference was “Approach to Care for Patients with Metabolic Disorders”). Conditions which put people at greater risk of harm from infections, hence the reason that people have been working to increase vaccine uptake in the Amish over the past 3 decades.

The Clinic for Special Children has been an example of how focusing on genetic conditions can have major impacts on the well being of those with the conditions. Over the past 30 years, the Clinic has pioneered efforts which have resulted in better health and longer lives for their patients. Too often we hear in the autism communities that genetic conditions mean “no hope”.

I’ll leave you with the words of Dr. Holmes Morton of the Clinic for Special Children. Words from the Clinic’s main page:

“Special children are not just interesting medical problems, subjects of grants and research. Nor should they be called burdens to their families and communities. They are children who need our help, and if we allow them to, they will teach us compassion. They are children who need our help, and if we allow them to, they will teach us love. If we come to know these children as we should, they will make us better scientists, better physicians, and thoughtful people.”


By Matt Carey

IMFAR program is now online

4 Apr

IMFAR, the International Meeting for Autism Research, is held in the spring of each year. Which makes me wonder, did the people who organized this have to go through IEP meetings? I ask because IEP meetings are often are held at the end of the school year and include a lot of evaluations, making it difficult for a parent to attend a Spring research meeting? It isn’t a parent conference, so this is really just an observation.

IMFAR is the top science conference for autism. It is big and it is where a lot of new work is presented. The meeting will be held in May and the abstracts will be available May 1st. But the program, meaning the titles of the talks, are available now. I’ve just done a little browsing and found some talks which are likely to spark conversations. These may not be the talks which reflect the research most likely to impact the lives of autistics and the broader autism communities, but I suspect these will be interesting to the online parent community. For example, one doesn’t need the abstract to get the conclusion of this talk: No Differences in Early Immunization Rates Among Children with Typical Development and Autism Spectrum Disorders. This paper is by the U.C. Davis MIND Institute, which carries a lot of weight with the groups who promote the vaccine-induced autism-epidemic idea, so perhaps this will help to move the discussion forward from the vaccine-focus of the past decade. One can hope.

On the first day, a keynote talk is being held: How Severe Is Autism – Really?

This session reviews the coexisting problems that usually exist in individuals with a diagnosis of autism spectrum disorder. It concludes on the note that it is possibly these associated problems and disorders that often drive the poor outcome that so many people now almost take for granted will be a consequence of autism in the longer term perspective. Language disorders, intellectual developmental disorders, non-verbal learning disability, epilepsy, medical disorders such as tuberous sclerosis and fragile X syndrome, ADHD, and depression are often the “real” cause of negative outcome in autism. Many people in the general population have marked autistic features without major “lifetime impairment”. The focus on *autism only* in early intervention programs is most likely a mistake.

And you probably thought when I said there would be talks which would likely “spark conversations” online, I was just talking epidemiology and etiology.

A recent paper proposed a correlation between a mother’s childhood history of abuse and autism risk in her children. (Emily Willingham discusses this study at Forbes). It appears the same team has a poster at IMFAR: Maternal Exposure to Childhood Abuse Is Associated with Elevated Risk of Autism. A big open question from that work is this: are autistics more likely to be abused as children? Which could make the link heritable. Which makes it interesting that this poster is in the same session at IMFAR:Epidemiology of Neglect and Maltreatment in Children with Autism Spectrum Disorders

There is an entire session on the ethical questions posed by biomarker research.

While the development of a blood biomarker as a screening or diagnostic tool for autism spectrum disorders is of great interest to the scientific and medical communities, it is also attracting intense scrutiny from other stakeholders including people with autism, ethicists, and parents. This symposium will therefore address the scientific, ethical and social challenges associated with the development of biomarkers for autism, and provide an update on the current status of research in this field. We will describe how the heterogeneity of autism, gender bias, and potential comorbidities, could derail the promise of identifying objective, reliable, and universally accepted biomarkers. We will consider the ethical and social issues relating to the development of biomarkers for autism in order to identify and describe the implications for the ‘difference versus disability’ debate; as well as consider possible wider tensions of biomarker research in relation to issues such as pre-natal screening and reproductive choice, and identity and inclusion for individuals on the autistic spectrum. Finally, we will summarize the most promising research on blood biomarkers for autism, describing the required steps to take a putative biomarker from the ‘bench to the bedside’. This educational symposium brings together researchers from scientific, ethical and psychological disciplines to provide a unique perspective on the utility of biomarkers for ascertaining autism risk, aiding in diagnosis and identifying therapeutic targets, all within the framework of the relevant ethical and social considerations.

Here’s the sort of research I wish were the sort to “spark conversations”. Adaptive Intervention For Communication In Minimally Verbal School Aged Children. That is a study I really want to see. Likewise, I am pleased to see an entire session on Young Children, Schools. And Adults, Lifespan, Methods. And services.

Terry Brugha, who headed up the U.K.’s adult autism prevalence studies of recent years will present: The Autism Epidemic Hypothesis: the Association of Autism With Age in the General Population.

There is a large international focus, with research from India, China, South America and other areas usually under represented in research. Another keynote talk discusses this in terms of epidemiology: The Epidemiology of Autism Spectrum Disorder: Toward a More Inclusive World:

We live in an era of exciting advances in our awareness and understanding of autism spectrum disorder, but also a time of enormous global imbalance. Most of what is known about the epidemiology, genetics, clinical manifestation and course, treatment, and nearly every other aspect of autism is based on research in high income countries, where fewer than 10% of births occur and less than 20% of the population lives globally. This talk will describe opportunities to expand the horizons of autism epidemiology and service delivery to include the 80 to 90% of affected individuals and families who live in low and middle income countries, as well as those who are socioeconomically disadvantaged and living in high income countries. It will also describe some of the cultural and financial barriers to progress, and make a case for incorporating concepts of the World Health Organization’s International Classification of Disability and Functioning into the classification and epidemiology of autism spectrum disorder, with the ultimate goals to include not only primary prevention of autism but also enhancement of participation and social inclusion of people with autism spectrum disorder.

One session is: 30-Year Follow-Up of Autism in Adulthood.

The population of adults with ASD is increasing rapidly, entering systems of healthcare and adult support that are already at capacity. Understanding the nature of ASD in adults, their unique needs, and availability of service options, is essential for resource planning and service development. Investigations into this period of life are increasing, but much remains unknown. This study examines adult outcomes for a large, population-based sample of adults identified as children in the 1980’s. Outcomes of interest concern diagnostic presentation, functional abilities, co-occurring medical and psychiatric conditions, social functioning, independence, service use, and access to services. Overall, outcomes for this sample were consistent with what has been reported for similar samples, yet there were notable differences in factors contributing to outcomes compared to what has been reported for other groups. Our findings support the importance of a range of accessible healthcare and support service options for adults with ASD. Detailed analyses are underway to investigate patterns leading to specific outcomes for subgroups of the population of adults with ASD.

I would have written that abstract a bit differently, but I am very appreciative that this session is being held.

Two years ago, I was able to attend IMFAR with the help of an Autism Science Foundation grant. I really wish I was able to attend this one. There looks to be a great deal of interesting research being discussed.


By Matt Carey