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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”.

Delay Not Halt

26 Sep

A new study from Washington University in St. Louis has confirmed what a lot of us suspected about the developmental nature of autism: that it gets ‘better’ with time. A quick quote:

Like most people, individuals with developmental disabilities such as autism continue to grow and change over time, Shattuck explains: “Their development is not frozen in time and forever the same. That’s just not the case.”

So, contrary to the oft-espoused crapola from the anti-vaccine/autism groups (TACA, Generation rescue, SafeMinds, NAA, Treating Autism) that our kids will be stuck in this non-developing situation forever, actual _science_ – when it looked at the question – found that the direct opposite was true; that autistic people develop as they get older.

You won’t be surprised to hear me say that, for me, this casts extreme and renewed doubt on the claim by the chelation/lupron/HBOT extremists and child-experimentalists that without the miracle cure du jour their poor, poor child would have just rotted away. In fact, next time someone claims to you that without treatment X their child would not have progressed, please point them to this study.

For all major symptoms, the percentage of people who improved was always greater than the percentage who worsened,” Shattuck says. “If there was significant symptom change over time, it was always in the direction of improvement, though there was always a group in the middle that showed no change. The mean never went down.

Lets be absolutely clear about this study though – it does not claim that (as you can see from the above quote) – that every autistic person changes. It would be strange if it did. In all walks of life there will be a group who do not. But it is clear from the presented results that improvement over time is a regular and common feature of autistic development.

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 autism is not

25 Sep

As I mentioned in my last post, I am currently reading Steven Pinker‘s latest, The Stuff of Thought, an interesting (so far) exploration of the role language plays in human nature. In preparing to make an argument at one point, he starts off by saying the following:

To truly understand what something is you must understand what it is not. (His emphasis.)

This, of course, got me thinking about what autism is not. (It seems I can’t read a book, or what a movie or TV show without finding some sort of connection to my thoughts about autism!) Here’s a quick list, I”m sure I’ll come up with more:

What autism is not:

  • Devastation
  • Train Wreck
  • End of the world
  • Caused by mercury poisoning
  • Purely environmental
  • Purely genetic
  • Caused by MMR (or any vaccine)
  • A curse
  • Punishment from God (whichever one may be yours)
  • A disease that can be cured
  • Easy to live with
  • Easy to explain to friends and family
  • Easy to explain to siblings of autistic child
  • Easy to explain to the autistic child
  • A reason to kill your child

I know there are more, many more, but this is what comes to mind tonight as I head off to bed. What do you think autism is not? (And please, if you disagree with one I’ve put here let me know.)

After Jenny and Oprah

23 Sep

And so, this was the week that the anti-vaccine/autism hypothesis got its first real airing in a public arena. Jenny McCarthy went on US TV and told her audience that her son was her science (quite possibly _the_ silliest thing on the show since Tom Cruise’s couch/brain malfunction).

I’m going to level with you here. I don’t really care too much about Jenny McCarthy spouting on about the evils of vaccines. She’s not the first and she won’t be the last. Despite the raptures the anti-vaccination people are having over her appearance she wasn’t on Oprah because of her vaccine ideas.

This is what bothers me: she was on Oprah because she was famous. It scares the _shit_ out of me that we can only apparently have a conversation about something after a celeb has let the light of their countenance shine down upon it.

The UK is just as ridiculous about this whole thing as the US. Its got to a stage whereby the subject under discussion doesn’t even seem to really matter to Joe Public – what seems to matter is that there’s a famous face pontificating on a subject that, in all honesty, they’ve probably only recently begun to get a firm grasp on themselves.

To put it another way, the Oprah show wasn’t about autism. It was about Jenny McCarthy. It was to sell copies of her book. Her appearance on People magazine is to increase book sales. Her upcoming appearance on Larry King is to increase book sales. None of it is about _autism_ . None of this will help the autism community. Even that subsection of the autism community who are anti-vaccine are kidding themselves if they think that after the dust settles on Jenny McCarthy’s book she will be around to lead them in their fight. Until its time for the sequel of course.

Is the autism community really so shallow that we are going into raptures because a celeb is speaking about a subject that vast majority of us could speak much more accurately and eloquently about? It seems some of us are.

In the meantime, whilst Jenny McCarthy is being lucratively controversial on Oprah, the vast majority of autistic kids are still not getting the right kind of educational placement. Whilst Jenny McCarthy’s Media Clean Up Crew are attempting hoover away every mention of her Indigo Children beliefs from the web lest they affect book sales, autistic adults are still struggling to get into appropriate work and living accommodations.

I would urge autism parents to spend the ten quid they were going to spend on Jenny McCarthy’s book on something that might actually help autistic people instead of helping line the pockets of Jenny McCarthy.

Just Singin’

22 Sep
[audio:headandshoulders.mp3]

It Doesn’t Look Like It’s Declining

22 Sep

David Kirby wrote a post titled Is Autism Declining? back in July (that I was reminded of after reading an entry by Sullivan.) I’ll address the primary claim of that post shortly.

For pattern and context, I would like to recap Kirby’s forays into the world of autism epidemiology. They seem to have started in November, 2005, when Citizen Cain explained to him that “new cases” or “intakes” were not a meaningful epidemiological metric, but that instead, he should be looking at the 3-5 caseload to get an indication of a possible drop in autism incidence.

When 2007 came and Kirby’s prediction of a drop in the California DDS 3-5 caseload famously failed, he apparently started to furiously scan various databases for any sign of a drop in “the numbers.” First,  he suggested we might be seeing a drop in speech-language impairment in IDEA. But the drops he was seeing were easily shown to be nothing out of the ordinary. Additionally, I found there were discrepancies between the IDEA data publicly available and the data he presented. Subsequently, David Kirby emailed a message to the EOHarm mailing list announcing he had found 4 states in IDEA with 3-5 caseload drops in autism between 2004 and 2005. Once again it was demonstrated that these drops were not unusual.

David Kirby never addressed these rebuttals. In fact, links to said rebuttals were not even allowed by whoever moderates messages in his blog at Huffington Post. But that is a different matter.

In his latest attempt at finding drops in the numbers, David Kirby tells us that while the California DDS 3-5 caseload is still rising as of Q2 2007, he obtained birth-year-cohort data that allowed him to look at 3 year olds in isolation.

But among the very youngest kids counted, the story was the opposite. At the end of June 2006, there were 688 children born in 2003 with autism diagnoses. This June, the number of kids born in 2004 with autism was 632, a statistically significant drop of 56 children, or 8.1 percent less than last year at this time.

I had sent a request to California DDS for this data, but I did not have to wait for it since a fellow blogger already had a copy. (Thanks.) I should note that I could not verify the 632 caseload number for June 2006, as the copy of the data I was given only ran to March 2006, but I’ll take David Kirby’s word for it.

I naturally decided to put the data in a graph. The following represents the caseload of autistic children in California DDS who should have been 3 years of age by June of each year shown.

cddsbyc22.jpg

You see that drop between 2006 and 2007? That is what David Kirby found which he believes is significant. Let’s be honest here. Does that look like a significant drop between 2006 and 2007, or does the spike between 2005 and 2006 look more significant than that? Caseload growth between 2005 and 2007 is actually pretty steep and in line with the previous trend, isn’t it?

Clearly, that’s a pretty weak finding and it can’t really tell us anything. If caseload drops to 1995 levels or something of the sort, then we’d be discussing something of interest. As things stand, 2007 has seen less autistic 3 year-olds than 2006, but a lot more than 2005. So? 

David Kirby, however, asserts it’s a “statistically significant” change. But I’m really not sure if this assertion is correct. Readers with a statistical background might be able to help with this one. If we assume a sample size of 540,000 (the population of 3 year-olds in California) and we use a simple confidence interval calculator (e.g. this one) the results I get are:

  • 2006: 688 (95% CI 638 – 741)
  • 2007: 632 (95% CI 584 – 683)

The confidence intervals (or error bars) overlap, so it does not appear that the change is statistically significant. But it’s possible David Kirby is using a different method to calculate the confidence intervals.

Conclusion

Data available is not sufficient to assert that the caseload of 3 year-olds served by California DDS might have begun a downward trend or even a leveling-off trend. Furthermore, the claim that the caseload change observed between 2006 and 2007 is statistically significant requires further support and clarification.

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.

Bedtime.

21 Sep

“If they had separate bedrooms”, I think to myself as I go in to prevent Tom’s headstand on his brother’s bed resulting in Tom landing on his brother’s head, “then I’m sure they’d settle to sleep sooner.”

 To be fair, Jacob – once he has got over the excitement of being two years old and being able to commit such daring deeds as emptying the clothes drawer, flinging various objects down the stairs and flinging himself on his brother, generally tends to fall asleep before too much time has elapsed. The bedtime routine, (bath, pyjamas, nappy change and story) appears to signal to Tom that now is the time for much jumping and spinning and crashing, interspersed with quiet bouts of block building, followed by shouting, singing and more jumping around.

 I enter the room and tell Tom to return to his own bed. He gives me a huge grin and collpases back on Jacob’s bed, giggling as he does so.

 “Get into your own bed!” I tell him, patient- mum rapidly being replaced by not-so-patient-she-devil, since I have had to remove him off his brother’s bed countless times this night. “Jacob is …”

 “AAH JACOB!” he shouts out.

 “Jacob is sleeping”, I inform him, then get him to repeat part of it in the hope he’ll understand.

 “Jacob is …”

 Tom places his palms together to the side of his head.

 “That’s right. Jacob is sleeping. He’s tired. Tom’s bedtime too. Into your bed.”

 Tom dutifully trots over and lies down, for all of three seconds. He stands up and begins jumping.

 “Settle down!” I tell him. He gets down off the bed and goes to his trampoline. I relent, ensuring that I will be forever scorned by SuperNanny but realising that, in the mood he’s in, sleep isn’t about to come anytime soon.

 “Five minutes” I tell him. I don’t know how much he understands about time, but hopefully he knows it means he can only jump for a short while.

 After five minutes are up I go back in and tell him to get back in his bed. He does so and this time lies down.

 “Aha!” I muse happily. “The jumping’s finally tired him out.

 Ten minutes later a small, yet growing steadily louder, voice comes floating up the stairs.

 “YEAH YEAH YEAH YEAH YEAH!”

 This time, when I check to see what is happening, he is grabbing Jacob’s hands (or trying to at any rate) and waving them bout the place. Thankful that Jacob hasn’t woken up yet (he is a light sleeper) I remove Tom and, once more, tell him to get back into his own bed. And again, he dutifully clambers back and lies down.

  Thus a pattern, familiar every night, emerges for the next ninety minutes or so. Every time I check Tom can be found either jumping, shouting, building and making patterns with his blocks or practising for the Olympic Gymnasts Team on either bed. And , every time, I place Tom back in his bed, or tell him to get back and he settles for anything from a few minutes to a few seconds.

 Except now I realise that I’ve not heard anything for at least fifteen minutes. No sound of blocks being shifted around, no songs being sung, no shouting, no movement, just quietness. Realising this could just mean he is busy getting into silent mischief I head down to see what he’s up to.

 At first I can’t spot him, he’s not on the floor and, after a quick check under the quilt on his bed I establish he’s not there either. And then I glance round.

 The pair of them are lying on Jacob’s bed, Tom’s head is nestled next to his brother’s, both pairs of feet touching. Their breathing is calm and easy, their faces soft and gentle as they are carried away by whatever dreams they are floating on.

 Separate bedrooms? They can wait. 

  

Autism and “I”

21 Sep

Earlier this summer I read Douglas Hofstadter‘s new book, I Am a Strange Loop. As Hofstadter mentions early in the book, a more appropriate title would have been “I” is a Strange Loop; the book is about the nature of consciousness, that elusive concept of “I”, and not an autobiographical work as the actual name of the book suggests.

Hofstadter’s works have been among my favorites since I read his first book, Gödel Escher Bach: An Eternal Golden Braid, in high school. The new book is, in fact, an updating of the ideas he first expressed in GEB. I have long hoped that he might address issues of the mind and consciousness in terms of atypical minds (such as autism), but aside from some passing discussion of those minds, I Am a Strange Loop does not provide any real insight into how the concept of “I” fits with autism.

On Monday, I was pleased to find a paper that specifically addresses the question of autism and “I”, Self-Referential Cognition and Empathy in Autism, co-authored by Michael V. Lombardo, Jennifer L. Barnes, Sally J. Wheelwright, and Simon Baron-Cohen. From the paper’s abstract:

Background. Individuals with autism spectrum conditions (ASC) have profound impairments in the interpersonal social domain, but it is unclear if individuals with ASC also have impairments in the intrapersonal self-referential domain. We aimed to evaluate across several well validated measures in both domains, whether both self-referential cognition and empathy are impaired in ASC and whether these two domains are related to each other.

Conclusions/Significance. We conclude that individuals with ASC have broad impairments in both self-referential cognition and empathy. These two domains are also intrinsically linked and support predictions made by simulation theory. Our results also highlight a specific dysfunction in ASC within cortical midlines structures of the brain such as the medial prefrontal cortex.

Instead of looking at autism as a syndrome of self-focus (the Kanner approach), the paper starts from the concept of “absent-self” put forth by Uta Frith in her book Autism: Explaining the Enigma. I had not heard of Frith before reading this paper, so I can’t really comment on her ideas. But the paper itself seems to make sense. I’m still going through it, trying to understand all that they are studying and what their results mean. (I did learn a new word: alexithymia – difficulty identifying and describing one’s own emotions.)

My first time through I Am a Strange Loop was to soak in the big concepts. I typically wait a few months before re-reading something like this so I can get into the details, but I think I’ll start again sooner than that. (At the moment, I’m reading Steven Pinker‘s latest book The Stuff of Thought.) Now that I have a bit more information about autism and “I”, I’ll have a better context for processing what I read.

Another interesting note about the paper, it was originally published by the Public Library of Science under a Creative Commons license. The PLoS home page describes it as a “A new way of communicating peer-reviewed science and medicine”, so I will assume the paper has been appropriately peer reviewed. But I think I will do a bit more checking just to be sure. (Of course, any insight from readers here would be greatly appreciated.)

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