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Autism Speaks refuses to talk: 1.5 million autistic people? How do you figure?

12 Jul

Not long ago Michelle Dawson, an autistic adult and autism researcher in Montreal, Canada, wrote that she had tried to get Autism Speaks to explain how they arrrived at their well known number of autistic people in the US (or just autistic children in the US, depending on which of their statements you are reading). She phoned the Autism Speaks offices not too long ago and eventually was handed off to a man named Michael. This apparently was Autism Speaks epidemiology “expert” of sorts, Michael Rosanoff, a young man in a sort of low level position at Autism Speaks and without much training in epidemiology it seems.

You can read some of what transpired in Michelle’s conversation
on her QT board And on her blog

I like this paragraph in particular from that blog

On the other hand, if Autism Speaks applies their advertised 1 in 150 prevalence figure to the entire US population (which cracked 300 million in 2006), then the result is a total of 2 million autistics in the US, of whom about 500,000 are children and 1.5 million are adults. But this would mean that there has been a high stable rate of autism. This is a scientifically sound position, but one that Autism Speaks and autism advocacy in general has rejected.

jypsy also contacted Autism Speaks through a form on their website and was sent to check out a page on the Centers for Disease Control and Prevention’s website that explained the 1 in 150 number, which was not jypsy’s question. Hers was the same as mine, “How did you get the 1.5 million autistics in the United States number?”. jypsy was told to check back with Autism Speaks if she didn’t get her answer on the CDC website. She checked back with them reiterating that she wanted to know how they got the 1.5 million number and they didn’t respond.

So I emailed Michael Rosanoff (mrosanoff@autismspeaks.org) and the AS general email address (contactus@autismspeaks.org) my question, which is below Mr. Rosanoff’s response here from Monday, July 7, 2008:

Ms. Clark,

Thank you for the e-mail. I will be glad to answer your questions. Would you be available for a brief phone call? If so, please provide me with some dates/times you are available as well as a number at which you can be reached. I look forward to speaking with you.

Best,

Michael

—–Original Message—–
From: [Ms. Clark]
Sent: Friday, July 04, 2008 5:57 PM
To: contactus; Michael Rosanoff
Subject: Question about autism epidemiology

Dear Autism Speaks and Michael Rosanoff,

I am gathering information for an article I want to write about
autism prevalence in the United States. Autism Speaks uses the CDC’s
latest estimate of autism prevalence, that is 1 in 150.

Autism Speaks also uses a figure for the total number of people with
autism in the United States, 1.5 million.

1) Can you show me how you arrived at the 1.5 million number?

2) Which census numbers were you using when you arrived at 1.5 million
and which prevalence numbers were you using?

3) Is it possible that the number of autistic people in the US is
significantly higher that 1.5 million? That is, if you divide the
currently population of the United States by 150 would you arrive at
1.5 million?

4) Can you tell me how you see the 1.5 million breaking down by age
groups, in other words, about how many of the 1.5 million are about
age 3-15 and about how many are 16-21? Also, how many are over 21,
and how many are over 50? If you can break out the ages using
different age groups that would be fine, but basically, how many
youngsters and how many adults?

5) Please indicate if you are using numbers for the whole spectrum:
autistic disorder, pdd-nos and Asperger’s disorder, or if you believe
that a set of numbers only applies to people with “classic autism”.

Thank you very much in advance.

[Ms. Clark]

I sent my question to Mr. Rosanoff on Friday, July 4, and he responded on Monday which was nice and prompt. I answered him on Tuesday saying that he could call me Thursday and gave him a time slot. I then told him if he confirmed that time was good I’d send him my phone number.
He didn’t respond.
Then I found out that it was likely that Mr. Rosanoff would not be responding, that it was likely he was just trying to give the impression that he wanted to respond… since really, he could have responded in the email to me instead of asking if we could talk on the phone. The whole thing about needing to talk on the phone struck me as a little bizarre anyway. Why couldn’t he just answer the questions, he being Autism Speaks epidemiology expert? Shouldn’t he be able to crank out the answers in his sleep? For that matter why isn’t there a page or two on Autism Speaks devoted to explaining how many autistic adults they are trying to serve as the big mondo world encompassing AUTISM (b)org?

So after getting no response about my offered time slot for Michael Rosanoff to call me, I sent Mr. Rosanoff and a few others at the now curiously silent Autism “Speaks” (including to media@autismspeaks.org) semi-cranky email saying this shouldn’t be a so difficult you guys, and asking them just to answer my questions, please, thank you. And I have had no response from any of those I emailed.

So I encourage any of you to also email Autism Speaks or to call them and ask them, how do you get your 1.5 million number. About how many are adults and how many are children? You could also ask them if they have a vague idea of how many of the total have “autistic disorder” and how many have another of the ASDs/PDDs.

If you’d like to send them a letter you could address it to:

Autism Speaks
2 Park Avenue
11th Floor
New York, NY 10016

This is their general phone number (212) 252-8584 and their fax: (212) 252-8676, if you prefer faxing the question. I suppose they answer the phone from 9-5 Monday through Friday, Eastern Time excepting holidays. I encourage all to use your “indoor voice” when calling and be polite as possible.

This is not a trivial question. If Autism Speaks wants to be BIG AUTISM* the borg (We are Autism Speaks. Resistance is futile. You will be assimilated.) of autism organizations then they should be able to give basic facts about the community they are claiming to serve when they are out pounding on people’s emotions to get them to fork over cash to support Autism Speaks.

*”Big Autism” is an apt term that was coined by the blogger Prometheus.

WXYZ and bad "investigative" reporting

11 Jul

Wouldn’t you love to move on from the thimerosal debate? Yes, I mean that as part of the greater move away from the vaccine/autism debate. But we are closing in on the end of the thimerosal era and, let’s face it, the nebulous arguments about “toxins” will be around for a while. People have learned the lessons of not making clearly falsifiable claims or setting deadlines for the “autism rate to decline”, so they will be able to keep the general vaccine discussion alive for some time to come.

But, we aren’t there yet with thimerosal. And, to prove the point, Steve Wilson at station WXYZ in Detroit has managed to regurgitate the standard thimerosal arguments. That would be not surprising. I expect a these aftershocks. What I is really annoying is the methodology. Orac has referred to it as “yellow journalism”, and I quite agree.

I will note that Orac and the Denialism Blog have both covered this in greater detail than I can. AutismNewsBeat has a journalist’s viewpoint as well.

Why am I annoyed with Steve Wilson? First off, he starts out by claiming that the “prevailing strategy seems to be to downplay the possibility of any link so that parents will continue to vaccinate their children”. (rough quote, sorry, I just don’t want to listen to that over and over again).

Sounds like a page from the Bernadine Healy playbook. Let’s imply something sinister is going on. Let’s imply that the AAP is hiding evidence. Steve: how about acknowledging that the “prevailing strategy” is to tell people what the science actually says? Doesn’t that seem like the “prevailing strategy” that the AAP and others are using? It does to me.

Another big chunk of the Steve Wilson’s report is based on this statement:

“..the truth is, there is still as much as ever..in 11 vaccines”

At this point, it’s worth reading Orac who lists the actual pediatric vaccines and their thimerosal levels.

You see, Steve Wilson pulled a classic con. Sorry to call it so bluntly, but that’s what I see. He talks about vaccines that aren’t being given to children young enough to develop autism. I don’t even know if the 11 vaccines he is talking about really do have thimerosal. Because, it doesn’t matter in this discussion. What matters is the pediatric vaccine schedule.

The part that bugs me is that Steve Wilson knows it. He gives as an example the thimerosal in tetanus boosters given to 11 year olds. Yes, he actually talks about 11 year olds.

Yep, the goalposts have moved so far, we are building new stadiums. 11 year olds being given tetanus boosters might develop autism. Except for Jim Carrey, who has ever implicated Tetanus shots? Even Jim Carry didn’t indicate that it was the booster given at age 11.

It appears to me that Mr. Wilson isn’t even going to the actual sources for his information. His report is a nice smattering of the standard vaccines-cause-autism line. One bit that caught my attention is when he talks about statements in the congressional record.

A congressional committee that studied the matter has already concluded: “Thimerosal…is directly related to the Autism epidemic.”

I was pretty sure that was a Dan Burton quote, so I Googled it to find the source. I came up with Deadly Immunity, by Robert Kennedy Jr, but I didn’t find the part of the congressional record with it. I looked a bit harder and found that the congressional record shows the statement as:

“Thimerosal used as a preservative in vaccines in [sic] likely related to the autism epidemic.”

I don’t agree with the above either. But, compare “likely related” (Steve Wilson) and “directly related” (congressional record). Somewhat different meaning, don’t you think?

I can’t resist putting out some of the list of “what do we know about mercury”? As it turns out, a lot. A lot more than I ever wanted to know, I’ll tell you that. A lot more than actually helps my family. But, here are some examples of what we know:

1) the dose makes the poison. Absolutely. There has to be a dose small enough that it would not cause toxicity.

2) mercury is everywhere. It was in the organic cinnamon-applesauce cup I just ate. It was in the organic lemonade juicebox I just drank. (sounds like I am the one on the playground, eh?).

3) When used in vaccines, it doesn’t increase the risk of most neurological disorders. Most? Yes, they didn’t include autism (see (5) below). Also, there were disorders that were indicated as possibly associated. Then again, there were some positive outcomes that were indicated as possibly associated with thimerosal. It looks like random chance–association is determined by statistics, and if you test enough associations, some will appear to be statistically significant.

4) when injected into pregnant women in RhoGaM type shots, it does not increase the risk of autism.

5) indications are that the upcoming CDC report on thimerosal and autism will show no increased risk.

6) Autism symptoms are not the same as mercury intoxication…autism is not “a novel form of mercury poisoning.

We could go on for a long time with the evidence against the concept that autism is caused by mercury. But, this is just a small list of the many things that somehow didn’t get into Steve Wilson’s investigative report.

New clues to autism's cause

10 Jul

Time report on a new study that found yet more genetic clues to what causes autism.

A paper published in the current issue of Science by researchers at Children’s Hospital Boston and members of the Boston-based Autism Consortium identifies five new autism-related gene defects. Already, more than a dozen genetic defects have been found to be associated with autism spectrum disorders, which affect about 1 in 150 children, according to the Centers for Disease Control and Prevention. But the good news, say the Boston researchers, is that many of the genes are beginning to fit into a pattern. “While it might seem discouraging that it’s a growing list of genes, we can be encouraged that a common pathway is emerging,” says Dr. Christopher Walsh, chief of genetics at Children’s Hospital Boston and an author of the paper.

I haven’t read the paper yet but it sounds pretty interesting. They eschewed US and European people and elected to study Turkish and Middle East autistic people because these families have a high incidence of cousins marrying cousins. The end product of this paper is that the authors believe autism may:

…fundamentally amount to molecular defects in learning.

I have issues with the word defect. Some research indicates clearly that autistic people learn differently and not in a way that should be classed as a defect. However, I understand that scientists use terminology pertinent to their training. Hopefully, lessons can be learnt in this arena.

One fascinating thing – and one long suspected by many of us:

There may be hundreds of varieties of autism. From what researchers have seen so far, says Morrow, “It looks like almost every child with autism is different from the next — a different gene is mutated in almost every child.”

A different gene in every child. That – to me – is one more confirmation of what I once thought of as a spectrum and now imagine as an ever-shifting Aurora of autism. And not just autism but _all_ neurological differences.

When is Jenny McCarthy Honest?

9 Jul

Is she honest in April 2008?

There are some who wonder what we mean when we say “recovering” from autism.

……

….we think there are treatments that often bring about such healing, so that the observable symptoms of the condition no longer exist.

……

We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines.

Or is she honest in June 2008?

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……

(Contributor from Autism One Conference wishes to remain anonymous).

So, in April 2008, Evan McCarthy is recovered (‘we believe what helped Evan recover…’). Not recovering but recovered. We can also see that among the treatments the helped Evan ‘recover’ is ‘detox of metals’.

Fast forward two months later and apparently Even needs chelation. Why? Back in April he’s recovered. Now he’s not? Now he needs chelation? And what for? Back in April, one of the ‘treatments’ that ‘recovered’ Evan was ‘detox of metals’. So why does he need to be chelated?

Can we add this to the other things that McCarthy has been slightly, ummm, vague about? Such as the fate of her indigomoms.com website? It existed in May 2007 as I blogged about it. But by July 2007 it had disappeared. Jenny’s explanation (from June 2008)?

SS: “You mention the word Indigo. What happened to your Indigo Moms website?”

JM: “You know I had to take that down and I was so sad to take it down, for a while anyways, it’ll be coming back up. People got really confused because I was coming out with Evan’s autism at the same time. And, they thought that I was healing Evan through Tarot cards instead of biomedical treatments.

So I realized I had to separate my messages and I had to take down one message which is the indigo and crystals, for now. I said, ‘oh the world is getting confused with these two different paths,’ you know. I consider them to be one. But people aren’t quite there yet and I kinda had to, not lower my vibration, change my vibration to focusing on the world hearing that message. Hearing that biomedical treatment does help these kids.

Right, right – oh the world is getting confused….so Jen just lowered her vibration and took her indigomoms site down.

Jenny McCarthy - Indigo Mom

Is it just me, or is anyone else starting to have a really bad feeling about this person’s involvement in autism advocacy?

Chelation study to be 'released'?

9 Jul

AP print an even-handed account of the current state of a Chelation study. This study which was approved and then put on hold:

….for safety concerns after an animal study, published last year, linked DMSA to lasting brain problems in rats.

I’m really torn about this study. On one hand, it would put to rest once and for all the issue of whether chelation benefits autistic children (except it won’t. When it finds chelation does nothing it will simply be attacked as crap by the anti-vaccine/autism groups). On the other hand, it will mean putting a whole load of kids at risk for no purpose whatsoever.

“I don’t really know why we have to do this in helpless children,” said Ellen Silbergeld of Johns Hopkins University’s Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute.

Quite.

Lets be clear. This study is being touted about for one reason and one reason only – to appease the anti-vaccine/autism groups. In the mainstream medical/scientific community (and notably in the toxicology community) it is well known that autistic kids aren’t toxic. Here is a few snippets from the testimony of Dr Jeffery Brent – a sub-specialty board certified medical toxicologist. He is an active member of the medical school teaching faculty and is an attending physician on the clinical pharmacology/toxicology consultation service at the University Hospital. Currently he holds the rank of Clinical Professor of Medicine at the University of Colorado Denver. Dr. Brent has a long list of publications, virtually all related to clinical toxicology. He is senior editor of Critical Care Toxicology: The Diagnosis and Management of the Critically Poisoned Patient and serves as Editor-in-Chief of Toxicological Reviews, a major international state-of-the-art review journal devoted to human toxicology.

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

A: Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration.

[For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

The standard way of chelating autistic kids is to do a provoked challenge test. As Dr Brent says – you’re _supposed_ to have increased levels with provoked examples.

Q: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

A: Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

So basically, when you do the provoked, non-standard tests from labs that make a good living from charging for these tests, they come back positive. When experts like Dr Brent do the gold standard tests, 100% of the time they come back normal.

*There is no reason to chelate autistic children* .

And here in this report is part of the problem. There seems to be a type of scientist who wants to short-circuit the scientific process:

Insel said he has come to believe after listening to parents that traditional scientific research, building incrementally on animal studies and published papers, wasn’t answering questions fast enough.

Well, boo-hoo. Its slow for a reason. Its slow to be as accurate as possible and to be as safe for humans as possible. Insel needs to remember that his patients – his duty of care – is not to parents, but to the autistic people in his case load.

And one more thing….in this piece, Jenny McCarthy says:

Actress Jenny McCarthy, whose bestseller “Louder Than Words” details her search for treatments for her autistic son, Evan, told thousands of parents at a recent autism conference outside Chicago that she plans to try chelation on him this summer.

I thought Evan McCarthy was recovered? Surely Jenny McCarthy isn’t – can’t be – wrong?

An Autism Hub Update

6 Jul

Last month, it became even more apparent to me that academia appreciates the Autism Hub.  I’ve always enjoyed a large proportion of visitors from .edu domains at Autism Street, and I’m sure the same goes for much more than a few hub bloggers. I mention last month, because that’s when a group of several Autism Hub bloggers were invited to present at the USD Summer Autism Conference (a second invitation). I would be remiss if I didn’t extend a “thank you” to Steve D of One Dad’s Opinion for his tireless effort in organizing our participation there. I would be even more remiss if I didn’t note that some outstanding people (like Drs. Anne Donnellan and Julie Robledo of the USD Autism Institute) in academic circles seem to have an eye on the future – they both seem to have a keen interest in adults with autism, and what’s coming from the real autism community in general. Of course, having an autistic child, it’s difficult not to appreciate those whose conference was titled, “Work With Me, Not On Me“.

At any rate, thinking a little more about an eye on the future, I proposed a minor facelift for the Autism Hub. As many of you are probably aware, the Autism Hub is no longer run by Kevin Leitch, so I sent the proposal to the current Autism Hub administrators. I was happy to learn that the proposed changes were accepted and implemented.

Have a look for yourself.

I’d like to take a moment and acknowledge the efforts of Kevin Leitch. His orignal Autism Hub designs paved the way for a true community tool that has enormous value. I also appreciate the fact that he does not oppose such changes (as communicated in an e-mail) to his original designs. The whole situation kind of reminds me of that moment when a parent lets go of something with respect to teaching their children. I would assume he’s proud that the Autism Hub stands on it’s own, but I would also assume he’ll view some things as potential mistakes (mistakes that are the Hub’s to make and learn from).

A minor visual redesign and a few potential mistakes aside, the long-term importance of The Hub is clear in my opinion. It remains one of a few unique places on the internet where one can find some of the best blogging from autistic adults (and family members and students/professionals) who focus on the important issues surrounding autistic people and the autism community.

Many thanks to Kev Leitch and everyone who contributes with their writing (or other skills) to The Autism Hub.

It isn’t RhoGaM either

30 Jun

If it’s a vaccine, or similar to a vaccine, especially if it contains thimerosal you gotta figure someone, somewhere has blamed it as a cause of autism. Such is the case of anti-D immune globulins, like RhoGaM. RH-negative mothers are given these shots while pregnant to protect their RH-positive babies.

If you are thinking like I was at first, “RhoGaM…where I have heard this recently?”, probably the most famous case involving RhoGaM is that of the Sykes family in what became Sykes v. Bayer. This was blogged extensively at neurodiversity.com, including the recent dismissal of the suit. On the way, the Plaintiffs subpoenaed Ms. Seidel (the more than a mere mother who runs neurodiversity.com). Said subpoena was quashed, and Mr. Shoemaker, the attorney who subpoenaed Ms. Seidel was sanctioned for what was deemed a misuse of his powers as an officer of the court.

But, I digress…Back to RhoGaM and similar products.

Earlier this month, a study by Lisa Croen (and other people familiar in the epidemiology of autism) was published:

Maternal Rh D status, anti-D immune globulin exposure during pregnancy, and risk of autism spectrum disorders.
Lisa A. Croen, PhD; Marilyn Matevia, MA; Cathleen K. Yoshida, MS; Judith K. Grether, PhD

It’s worth reading, and, I would bet money, is soon to be attacked. Why? Take a look at the last line of the abstract:

“These data support previous findings that prenatal exposure to thimerosal-containing anti-D immune globulins does not increase the risk of autism. that prenatal exposure to thimerosal-containing anti-D immune globulins does not increase the risk of autism.”

One could speculate whether the parties in Sykes v. Bayer were aware that this paper was in press, and whether that had anything to do with the dismissal. Without any more information, it would be just that: speculation.

Something that rises above speculation, but is below the level of a conclusion of the paper is this question: does this mean that this level of thimerosal exposure to pregnant women (at least at the times similar to that of RhoGaM injections) is off the hook in general? Or, to put it more simply, does this tell us that thimerosal containing flu shots given to pregnant woman are likely not a contributor to autism risk?

This is an interesting question in some circles. In the shifting sands of the desert that is the thimerosal-caused-autism science, the thimerosal containing flu shot is gaining prominence. Ignore the fact that a minority of pregnant women get the flu shot. Somehow, these flu shots are supposed to be taking up the slack left behind by the phase out of thimerosal from the pediatric schedule. (I can hear people now, “oooh, he’s perpetuating the myth that thimersosal is gone. There are trace amounts left. Trace amounts!” Another of the sand-dunes of the desert.)

OK, for the ultra involved, I bet some people fixated on the statement: “These data support previous findings…”. Some people will be angry with the thought that Croen et al. seem to be ignorant of “Neurodevelopmental disorders, maternal Rh-negativity, and Rho(D) immune globulins: a multi-center assessment.” By Geier, Mumper, Gladfelter, Coleman and Geier. Yep, our good friends the Geiers. I believe that is also our new friend, Dr. Mumper as well.

But, rest assured, Croen and company are aware of Dr. Geier’s team and included their work in their analysis.

Similarly, Geier and Geier found that the frequency of maternal Rh-negative status among 53 consecutive non-Jewish Caucasian patients with ASD referred to their genetic clinic was significantly higher than the frequency among 926 non-Jewish Caucasian pregnant women who presented at their clinic for prenatal genetic care (28.3% vs 14.4%, P ” .01), and all ASD patients with Rh-negative mothers received RhIg during pregnancy. Given the authors’ belief that thimerosal-containing vaccines cause autism, it is likely that the ASD patients who seek out their clinical services are skewed toward higher perceived mercury exposure. For that reason, these study findings may be biased and should be viewed with caution.

And, yes, they also note the Holmes “baby haircut“study as well. But that study has been through the wringer so many times, it’s best to move along.

As they indicate, Croen et al. are not the first to look for and fail to find evidence of a link between Rh status and immune globulins. Miles and Takahashi’s 2007 paper, Lack of association between Rh status, Rh immune globulin in pregnancy and autism found, well, a lack of association.

Of course this isn’t going to be the end of the discussion. The Miles and Takahashi study was met in short order by a comment by Bernard, Blaxill and Redwood. I’d bet the cash in my wallet that a response to the Croen et al. study is in the works.

And, unfortunately, that is the problem we as a community have to deal with. As noted (with some sadness, I am sure) in the Omnibus testimony of Dr. Mumper, the question of thimerosal and autism is a closed book to the scientific community. There are a few studies still ongoing, but indications are that they will also show no effect.

It will be hard enough to keep the interest level high amongst legislators as the science quashes the guilt factor of vaccine induce autism. It will be even more difficult if we are perceived to be clinging to the failed theories and ignoring good science.

Autism isn’t “a novel form of mercury poisoning“. Not from vaccines, not from immune globulins, not from plumes of mercury from China. Let’s stop moving goalposts and patting ourselves on the back for being flexible. Instead, let’s accept that falsifiable hypotheses have had their chance and been falsified. That’s learning.

Nigerian Neurodiversity

17 Jun

Its refreshing to realise sometimes that there is a world ‘out there’ beyond the West and that they are living with autism too. And whats more, they aren’t considering it soulless, or sucking the marrow out of families, or organising pointless marches for people to exercise their right to blame others, or forming organisations that concentrate on blaming vaccines, or claiming that denying autism was anything except mercury poisoning in the past and now claiming its the vaccine schedule is just the evolution of a hypothesis, or making a tidy profit of the ignorance of parents.

No, what they’re doing is ‘serving humanity’:

Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag ‘normal children’.

and

Mr Ayiem……said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.

and most of all

….socially people see it as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world.

………..

autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things.

……….

If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.

Nigeria is classed as a developing nation (what used to be called ‘third world’). I’d say that in my opinion it has developed a whole hell of a lot further and faster than some people I can think of over in this supposedly enlightened culture.

Omnibus Autism hearing: Dr. Lord on autism and regression

16 Jun

Dr. Catherine Lord is widely viewed as the world’s foremost expert on autism diagnosis. The Department of Justice lawyer who examined Dr. Lord in the thimerosal portion of the Omnibus hearing spent what seemed to me to be a very long time just going over Dr. Lord’s credentials and accomplishments as they are considerable.

I was listening to the recording of her testimony yesterday, again, and was reminded of how much I had learned from listening to Dr. Lord’s testimony about what is now known about the early months and years of autistic children. I already knew the basics of what she was explaining but there were some fascinating details that I didn’t know. Links to two audio clips that contain the following testimony are found at the end of this blog entry. Once again, I did the transcribing of the audio, and once again I’m guessing the Dept. of Justice lawyer is Ms. Ricciardella:

Ms. Ricciardella: Does any of your research or research of others support a distinct subtype of regressive autism?

Catherine Lord: No. I mean as especially as we have looked at the toddlers… it’s clear that even, even these very large studies where we felt like we were asking parents many, many questions in great detail probably do not get at what the essence of what happens in those early months because the changes are more subtle and our ability to observe them is so much dependent on the context. It dependent on when do you see a child and what are you looking for. So I think that that has that has moved us, and I think much of the field, toward a sense that there isn’t a regression or not a regression the question is the degree and type of worsening that occurs, how long it lasts and how many skills a child has before that occurs.

Ricciardella: Now in terms of the clinical outcome of a 5 or 6 year old with autism. Is there any marked difference in the clinical outcome of a child who had what I’ll term “early onset autism” versus a child who did indeed have regression.

Lord: Most studies have found no difference at all. The studies that have found differences have found these relatively small differences in verbal skills.

Ricciardella: Now you touched on earlier doctor that you are continuing to research the phenomenon of regression is that correct?

Lord: That’s right

Ricciardella: And you are conducting a longitudinal study. Is that correct?

Lord: That’s right.

Ricciardella: And what information is emerging from that study with regard to regression?

Lord: With that study we have been doing is seeing children who are at risk for having autism, either because they have a sibling with autism, so they may not have any behaviors associated with autism but they have a sibling and their parents are eager to have somebody follow them, or something has occurred, or something has has been seen, often identified by parents, but sometimes by a pediatrician, for example the child has had seizures in the first year of life and so someone is concerned that this child might develop autism.
And we see the children once a month, have parents fill out the same forms each month and then we do standardized assessment, a toddler version of the ADOS. So we do a standardized observation of the child’s social behavior with us and with the parents every month.

What has come out of this is that the trajectories are much less clear than we would have thought from retrospective descriptions years later of what the children are like, and when we have tried to sort that out, I think that there a number of implications. One is that different skills are changing at different rates and at different times. So that you have, for example, eye contact is typically getting worse for almost all of the children for from 12 month to 24 months. And social engagement responsiveness to someone trying to get the child to interact with them typically is getting worse in children who have autism diagnoses say by the time they are 2 1/2.

So those things are changing but they actually cycle back around, so they get worse for a while and then for some children they start getting better again.

We also have other skills, for example response to joint attention, or response to somebody pointing, or trying to get the child to look at something, and that for a number of kids gradually gets better even at the same time that some of these social skills are getting worse.

So I think what we’ve realized is it’s just much more complicated changes in development than we thought.

And that these things we used to think only happened in kids who had regressions are actually happening in almost everybody who has autism, because there are some children who look very different from typical children at 12 months, but those are few and far between, and in fact in our follow up study that is not necessarily predictive.

The kids who are not making eye contact at 12 months are not the most autistic kids at age 3. So many things change during that toddler period and I think our conceptualizations of what regression is are partly based retroactive trying to figure out what happened and didn’t happen, which is quite different than when we can see it happening right before our very eyes.

…
(the second audio clip)
Ricciardella: Doctor are you are aware of any evidence showing that the etiology of regression in autism is different from that in “non-regression” for lack of a better word.

Lord: No. And I think again that the idea that there aren’t these clear patterns makes it much harder to draw conclusions about etiology. Because basically could arbitrarily divide these kids up in millions of different ways. So far, … people have tried to divide them up and haven’t found differences in etiology. But it’s not even clear that we know how to divide them up, or that they can be divided up.

Ms. Ricciardella: Doctor before this litigation had you ever read in any published literature that thimerosal containing vaccines cause regressive autism only.

Dr. Lord: I had not.

Ricciardella: Are you aware of any study that has ever suggested that hypothesis?

Dr. Lord: No.

Ricciardella: Doctor did you review the report submitted by Dr. Marcel Kinsbourne in this litigation?

Lord: Yes.

Ricciardella: On page 14 of his report, he states that the, “late onset of the regressive subtype and the subsequent remission or relapses become more understandable if autism is due to disease than if it is the aftermath of congenital maldevelopment.” Do you agree with this statement?

Lord: No

Ricciardella: Why not?

Lord: There are many different disorders where the onset occurs later on. We have Huntington’s disease and schizophrenia and sickle cell anemia and all kinds of disorders… where in some cases we know are genetic, but which occur later on. So I think we can’t make a simple inference that because something emerges later that means that somehow someone has caught a disease or had some kind of particular environmental event that caused it.

Ricciardella: Dr. Kinsbourne also draws a distinction between what he terms as classical or congenital autism and regressive autism. Is this a proper distinction?

Lord: I think the term congenital autism means nothing. Because, I mean, as I said it’s a developmental process. We can’t diagnose autism in a brand new baby. And so in all cases something is developing that would lead us into autism. So to make this distinction between congenital and regressive is a false dichotomy.

Ricciardella: … Dr. Kinsbourne has also describe what he terms his “over-arousal model” as an explanation for autistic behavior. Does his over-arousal model accurately describe what is known about autistic behavior?

Lord: I don’t believe so, I mean the over-arousal model has been around for 40 or 50 years and used to describe many different disorders. I think one of the hard things is that it’s becomes very circular. And children with autism do respond to being over-stimulated as do many other kids, and children with autism may respond in more conspicuous ways, and may have a lower threshold. But the problem is that often the behaviors are used to say that a child is responding by over-arousal, for example by flapping or getting very physically excited, or distracted, are the same behaviors that occur when the child is under-aroused. You know, we can get children who have a lot of self-stimulatory behaviors to do these behaviors by putting them in a situation where there’s nothing to do. We also see children do these behaviors when they are very happy or when they are not so happy. So that the behaviors that used to define over-arousal are behaviors that occur in many different contexts.

Ricciardella: Thank you. That’s all I have.

…

PSC Lawyer, Tom Powers: … I do have some questions to ask you as you might imagine based on the report you filed and the testimony you gave today. …Your testimony … is that there’s no phenotype for regressive autism. … Regression within autism is not a distinct phenotype with in autism spectrum disorder, is that correct?

Lord: Yes.

Powers: You’ve also describe regression in autistic children as a striking phenomenon. … How would you describe the difference between a phenotype and striking phenomenon?

Lord: My point about the striking phenomenon is that it is a remarkable experience to watch a child who has been able to do things not be able to do those things. Or to watch a child who has been relatively socially engaged become less engaged and be more and more difficult to engage or attract. But I think that is different from a phenotype because a phenotype implies that there are a cluster of behaviors that are associated with each other, and that there’s something unique about that cluster of behaviors. I think regression is a real phenomenon in autism, but there’s a continuum of regression. … And we can create a phenotype, I can say, well I’m only putting kids who lost words into this group and I’m going to call it the Lord phenotype. But there has been no, nobody has been able to show that that phenotype is associated with anything other than the characteristics which I used to define the phenotype.

Powers: And that would be because, as I understand it, is because autism diagnostically is entirely a symptomatic diagnosis that is there’s not a biomarker … is that correct?

Lord: It’s not, the problems with defining the phenotype aren’t because autism is defined by purely by behavior, it’s because we haven’t been able to find an association between any of these particular phenotypes that people have pulled out, and the ways in which people have pulled out the phenotype.

I realize now that if my own (now adult) ASD child been a part of Dr. Lord’s baby siblings study that they would have been able to document a “regression” because, basically all autistic children regress, depending on how strictly you define “regression”. I remember my ASD child as an infant apparently losing the ability to respond to the sound of his/her name, and then regaining that ability. Looking back, I doubt that I could isolate the dates when this “regression” started and when it ended, since is was just aggravating to me at the time and not something I brought to the attention of our family doctor.

(Edited to fix some errors my transcribing. Also, I just listened to the second clip I uploaded to boomp3.com and realized that it is a little shorter than I thought.)

Click here for the first clip.

Click here for the second clip.
For some reason I can only embed one “player” and it must be at the very end of the post. This plays the second clip:
http://static.boomp3.com/player.swf?song=by6i9hwl7_0<a style=”font-size: 9px; color: #ccc; letter-spacing: -1px; text-decoration: none” target=”_blank” href=”http://boomp3.com/listen/by6i9hwl7_0/lord-2″>boomp3.com</a&gt;

Tags: ,

Quag-Geier

14 Jun

I propose that any researcher or scientist who unwittingly gets into a quagmire with the Geier’s should be referred to as being ‘quag-geier-ed’. Its a handy way of referring to people who’ve (possibly accidently) stumbled into a great big pile of shit.

I therefore nominate Professor Heather Young as the inaugural QuagGeier. She has published a paper with the Geier’s which alleged to find:

associations between neurodevelopmental disorders (NDs) and exposure to mercury (Hg) from Thimerosal-containing vaccines (TCVs) by examining the automated Vaccine Safety Datalink (VSD)

One would imagine that any serious researcher who valued her career would be reluctant to associate with the Geier’s who have odd ideas about what is valid research but maybe Professor Young simply didn’t know.

Anyway, I forwarded the paper itself onto Epi Wonk, a blogger who:

…has a Ph.D. in epidemiology from an Ivy League university. Before that I got a bachelor’s degree from a different Ivy League college, a master’s degree in developmental psychology, and a master’s degree in medical sociology from another Ivy League University. I worked for more than 30 years as an epidemiology professor in medical academia and schools of public health, and in the senior biomedical research service at the Centers for Disease for Disease Control and Prevention (CDC). During my career I have been the editor of two epidemiology journals and one more general biomedical journal. I am now retired.

So very, very bad was the quality of this paper that Epi Wonk took three (and possibly a couple more in the future) posts to tackle the numerous issues with it. I plan to recap them here but here is Epi’s take on the paper itself.

So in part I, Epi found the following:

dubious “imputing” or imputation lies at the bottom of the author’s little trick…..

Imputastion is simply – using known data to ‘guess’ at unknown data. Epi gives an example:

…let’s say a researcher has a file of data on children and 8% are missing data values on parent’s household income, 4% are missing data values on gestational age at birth, and 1% are missing data values on birth weight. She decides to use an imputation procedure to impute values for parental income, gestational age, and birthweight where they were missing. Perfectly fine, legitimate, and scientifically valid under most circumstances.

However, when we are dealing with something like autism….

She examines the data and sees that in certain cohorts in her study population the distribution of autism isn’t quite what she would like. So she “imputes” autism cases into the data set. Except that she’s not imputing a value on a variable for an existing study participant. She’s adding imaginary autism cases into the analysis. This isn’t imputation — it’s cooking the data.

Epi was very disturbed about this to the point that xe said:

This is just not done. It’s not valid. It’s not ethical. Adding imaginary cases into a data set borders on scientiific fraud.

Later on in the comment thread that developed, commenter Andrea asked:

Does this mean that Young, Geier and Geier added 45 and 80 cases that were not in the original data sets, that they MADE UP those 125 cases just to add imaginary data points to make the stats results look more like what they wanted?!

Thats exactly what happened.

In Part II of xes detailed look at this paper, Epi concluded that when it come to controls and particularly controlling for any confounding variables:

….there’s no attempt to control for, or adjust for, the confounding effect of birth cohort. Just one look at Figure 1 (or a basic knowledge about trends in autism) tells you the regression coefficients (slopes) are being driven by increases in autism risk over time. Given the increase in frequency of autism (and other neurodevelopmental disabilities) during time time period, you could do an ecological regression analysis of almost any factor that varied over time and you would find an an association with autism. I would bet that you could enter number of sushi bars per capita into an ecological regression and you’d find an association with autism rates.

This is not a good or valid paper. It seems, based on the expert analysis of a professor of epidemiology that this paper is fundementally flawed.

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