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Autism and allergies

8 Oct

ResearchBlogging.orgAllergies are often a topic of discussion in the autism community. Much of the alternative- medicine approach works from the point of acting on allergies. I saw this paper and found it interesting, but wasn’t going to blog it until the PETA campaign (Got Autism) came up using the proposed sensitivity of autistics to casein.

The paper is Atopic features in early childhood autism, by B. Bakkaloglu, B. Anlar, F.Y. Anlar, F. Oktem, B. Pehlivantürk, F. Una, C. Ozbesler, and B. Gökler. As you might guess from the author list, this isn’t a U.S. or western European group. They are from Turkey. I have no reason to doubt the group’s quality, but that fact, together with the fact that the sample size is relatively small (30 autistic and 30 controls), suggests to me that this isn’t going to be the final word on this subject.

That said, the paper looks for allergic hypersensitivity (atopy) in a group of children with autism.

Here’s the abstract:

BACKGROUND: Autism is a developmental disorder of unknown etiology. Sensitivity to dietary and environmental antigens has been considered in its pathogenesis.

AIM: To examine immediate hypersensitivity in early childhood autism.

METHODS: We investigated 30 autistic children (23 boys, seven girls 2-4 years old) for atopic history, serum IgG, IgA, IgM, IgE levels, and skin prick tests (SPT) with 12 common antigens.

RESULTS: Nine/30 autistic children (30%) and 1/39 (2.5%) age-matched neurological controls from the same hospital had a family history suggestive of atopy (p<0.005). No patient in the autism and 28% in control group had symptoms of respiratory allergy (wheezing or asthma) (p<0.005), and 6/30 (20%) autistic vs. 7/39 (17%) control children had history suggesting other allergic disorders (p=ns). Eleven/23 (47.8%) autistic children had at least one positive skin test, similar to age-matched population controls. Serum IgG, IgA, and IgM levels were within age-appropriate limits. Serum IgE was elevated in four patients (13.3%). Specific IgE levels were negative in four cases with multiple SPT positivity.

CONCLUSIONS: This study suggests allergic features based on history, skin tests, and serum IgE levels are not frequent in young autistic children despite family history. This discrepancy between predisposition and manifestation might imply immunological factors or environmental condition

That gives away the punch-line: they don’t see a correlation between allergic features and autism. It’s still worth looking a bit closer at the paper.

They recognize that autism is a broad spectrum, so they attempted to look at a group that was fairly similar:

Many studies examined hypersensitivity or intolerance to environmental and food antigens in autism: however, their interpretation and comparison may be difficult due to methodological differences or anecdotal nature of the information. In addition, autistic spectrum disorders are a mixed group: inclusion of patients of various ages and clinical phenotypes can cause discrepancies, which we intended to avoid by studying newly diagnosed cases with idiopathic childhood autism in a narrow age range.

The study looked at very young children, ages 2-4. Autism was measured by a CARS test. Autistic children had scores from 33-50, with a median of 44.5. Since a score of 30-36.5 is considered “mild/moderate” autism, these data indicates that the children were largely in the “severe” range.

They found that 30% of the autistic children had familial history of atopy, compared with only 2.5% of the control children. However, autoimmune disease was not present in high numbers in the parents. Those two facts are interesting on their own, and if that was the end of the study, I wouldn’t be surprised if it popped up in autism discussion forums. But, another interesting finding is that the atopy is not found in the autistic children.

The questionnaire for allergic symptoms indicated familial atopy in 30% of autistic children and 2.5% of hospital controls (p<0.005) (Table 1). Taken together, 3/30 children of the autism group (10%) and 15/39 of the hospital controls (61%) had a score of at least 1 (p<0.005), and the rate of reported allergic symptoms was 6/30 vs. 7/39 (p:ns). Groups did not differ significantly in early-life environmental factors likely to affect allergic state: area of residence, day care attendance, breast feeding, and birth order. Parental autoimmune disease was present in two autism (vitiligo, psoriasis) and one control case (arthritis) (p:ns). CARS scores of the autism group were 33–50, mean 43.6, and median 44.5.

But, given that my interest level was higher due to the PETA ads using the proposed casein sensitivity of autistics, I wanted to see what sensitivities they found:

Of total 276 skin tests applied, 27 (9.7%) were positive, most commonly against aspergillus and grass antigens, followed by cat fur and D. farinae. Eleven/23 (47.8%) of children who received skin tests had a positive result with at least one antigen and five of them, with multiple antigens. House dust mite sensitivity was seen in three (13%), pollen, five (21.7%), and mold, in six (26%) children.

Serum IgG, IgA, and IgM were within age-appropriate limits according to laboratory standards. Serum IgE was elevated in 4/30 cases (13.3%), all associated with allergic symptoms in the patient or in a family member, or SPT positivity. Antigen-specific IgE tests done in four out of five children with multiple SPT positivity were negative.

So, mold (aspergillus), grass, cat fur and dust mites (D. farinae) were the top. Not casein, not gluten.

Again, do I think this is the last word on autism and allergies? No. But, I do think it is a good example of newer studies than, say, PETA’s reliance on a 1995 paper.

PETA appears to have wanted just enough data to justify their billboard. I join many in the blogging community who found the use of people with autism–the misuse, I should say–abhorrent. Kev has already responded in his own way. It took me a while to find my own, rather obscure, method of response.

I am grateful that the billboard has been pulled. I would hope that PETA would issue an apology as well. I’m not holding my breath.

B BAKKALOGLU, B ANLAR, F ANLAR, F OKTEM, B PEHLIVANTURK, F UNAL, C OZBESLER, B GOKLER (2008). Atopic features in early childhood autism European Journal of Paediatric Neurology, 12 (6), 476-479 DOI: 10.1016/j.ejpn.2007.12.008

Kirby launches torpedo at Verstraeten, sinks Geier

8 Oct

The thimerosal/autism study by Thomas Verstraeten is one of the big targets for those with the vaccines/mercury cause autism agenda. For what it’s worth, Autism’s False Prophets goes into the history of the Verstraeten study and clearly explains the history of that study.  Not surprisingly, the answer is somewhat different than you might find in, say, Evidence of Harm.

In his recent briefing on Capital Hill,  David Kirby took another jab at the Verstraeten study. He tried to assert that (a) the NIEHS claimed that the Vaccine Safety Datalink was unusable for autism studies and that (b) the CDC agreed. He was incorrect, and, luckily, a staffer caught Kirby at it.

Mr. Kirby is trying to explain his actions in a blog post in which he posts an open letter to that congressional staffer.

Let’s consider something here: the congressional staffer, an M.D., knew enough about the subject to catch David Kirby misquoting the NIEHS. I wouldn’t have been quick enough on my feet to catch the misquote.  Now, David Kirby wants to educate this gentleman. Frankly, the information should be flowing the other way. If Mr. Kirby had shown himself open to such education, say when EpiWonk made it abundantly clear (twice) what Mr. Kirby’s mistakes were, perhaps it would be worth the staffer’s time to discuss this with Mr. Kirby. That said, let’s take a look at Mr. Kirby’s letter.

In regards to Mr. Kirby’s misquotes, he has recently “clarified” his position.  He is writing to the Doctor who corrected him in his briefing here:

As you rightly pointed out (and as I concurred that day) I omitted an important detail in regards to Dr. Gerberdings’s letter to the Committee. I regret that, and never meant to mislead people in the room.

It was a rather artless sin of omission.

I think the lesson for me here is that, when you try to cram a two hour presentation into 25 minutes, it is wise to not include very complicated and, as you put it, “somewhat arcane” details that are difficult to explain in such a short period of time. In retrospect, I probably should have focused solely on the NIEHS report itself, and left the Gerberding letter out of the presentation entirely.

Mr. Kiby iscorrect, it is a confusing situation.  There are two documents–an NIEHS report and Dr. Gerberding’s response for the CDC. But, does that excuse misquoting the head of the CDC in his legislative briefing?

Here’s what David Kirby in his capital hill briefing “quoted” the NIEHS report as saying:

NIH: “We identified several areas of weakness that were judged to reduce the usefulness of the VSD for addressing the potential association between exposure to thimerosal and risk of ASD.”

That isn’t in either the NIEHS report or Dr. Gerberding’s response.  Here’s what Dr. Gerberding actually agreed to:

The panel identified several serious problems that were judged to reduce the usefulness of an ecologic study design using the VSD to address the potential association between thimerosal and the risk of AD/ASD.

Emphasis is mine.  But, we’ve already discussed that: Dr. Gerberding didn’t claim that the VSD has reduced usefulness in addressing the thimerosal/autism question. It made a claim that the ecological studies using the VSD had limitations. But, the recipient of Mr. Kirby’s letter would know that.

Back to Mr. Kirby’s open letter: David Kirby is now presenting his own interpretation of the NIEHS report, in place of Dr. Gerberding’s.

As I interpret things, the panel concluded that the database itself suffered from several weaknesses and limitations, which in turn reduced its usefulness for studies of autism risks from thimerosal (ie, Verstraeten) AND ALSO reduced the feasibility of future studies (ie, ecological ones) that are based on data collected within the VSD.

As EpiWonk aptly pointed out, Mr Kirby’s assertion is not the case. The NIEHS panel suggested a number of possible studies on autism using the VSD.  From the NIEHS report:

An alternate future study design that was viewed positively among panel members was a study of a high risk population, defined, in this instance, as siblings of individuals diagnosed with AD/ASD. A sibling cohort from the VSD would allow comparison of AD/ASD risk in siblings as a function of their thimerosal exposure through vaccination and the sample size would lend itself to supplemental data collection. A related study design based on sib-pairs or sets could be used to address discordant ASD/AD status in relation to thimerosal exposures. Another possibility that generated support by the panel was an expansion of the VSD study published by Verstraten et al (2004). The availability of several additional years of VSD data was seen as an opportunity to provide a more powerful test of any potential association between thimerosal and AD/ASD and would enable reconsideration of some aspects of the original study design (e.g., exclusion criteria). A related idea was to conduct a VSD retrospective cohort study using California-based MCOs linked with the California DDS, which would improve the diagnostic data and provide more complete ascertainment. For each of these designs, the ability to link medical records from mothers with those of their children was deemed critical.

As this reader interprets things, NIEHS seems to find that there is quite a bit of value in the VSD for studying autism, including an expansion of the Verstraeten study.

EpiWonk made the point first, but how can the NIEHS say that Verstraeten study design is not a good and that future use of the VSD is not useful, while at the same time suggest expanding Verstraeten?

The bottom line is that there are limitations to using the VSD alone in ecological studies of autism. One can overcome these limitations by going to chart reviews and other methods–as used in Verstraeten et al. and, more importantly, by VSD studies ongoing at CDC (one of which looks at autism).  As noted by Dr. Gerberding:

The VSD currently has a number of priority studies underway to address a range of important immunization safety questions, none of which utilize an ecologic study design. Instead, these current studies, including one study evaluating associations between thimerosal-containing
vaccines and autism, all evaluate individual-level data. This typically involves the review of individual medical charts to confirm the vaccines each individual received as well as the outcomes being studied. Studies using individual rather than group data provide stronger scientific evidence.

Mr. Kirby seems to be neglecting the fact that the CDC’s ongoing study (and the Verstraeten study) is not soley dependent on the VSD for the data.  He seems to be arguing that since the VSD, as a single data source, has limitations, the CDC can’t use it for any study. It’s like saying,

But, let’s take a closer look at what this says….and what Mr. Kirby is saying: The VSD on it’s own is not a good source of data to look at the thimerosal/autism question.

Now, anyone remember all the consternation that has been created by the fact that the VSD is not open to just any outside researcher?  Why should the VSD be opened to, say, Mark and David Geier?  Could they do the individual level data collection needed to make a VSD study valuable?

Apparently not. Recall this study by the Heather Young and the Geiers: Thimerosal exposure in infants and neurodevelopmental disorders: An assessment of computerized medical records in the Vaccine Safety Datalink

This was a study paid for by the petitioners in the Omnibus proceding.   It, on it’s own, was bad enough that EpiWonk disassembled it.  Twice.

The recent Heather Young/Geier paper didn’t look at individual level data.  Any future study by the Geiers almost certainly wouldn’t as well.  Given the argument by the NIEHS, Dr. Gerberding…and David Kirby, the above study and any proposed study by the Geiers on the VSD would be useless.

Some how I doubt Mr. Kirby will make statements confirming that. But, I can’t see how he could hold any other opinion, given the arguments he, himself, has made.

Peta – Idiots

7 Oct

The text below is from my good friend Ari Ne’eman. My own contribution is supplied in a link at the bottom of his text.

I am happy to announce that PETA’s recent, “Got Autism?” billboard has been removed by the advertising company hosting it. The billboard misinformed the public about the autism spectrum by falsely implying that milk consumption was the cause of autism. Such advertising contributes to a state of public hysteria about the autism spectrum, fueling the fear and resulting prejudice that marginalizes us from society at large. It is unacceptable for autistic people, our families and supporters to be used as instruments in PETA’s political agenda or that of any other unscrupulous interest group. Our community came together to communicate the need for a swift withdrawal of this ill-informed piece of advertising, and I’m pleased to say that were able to achieve a swift result. That we were able to accomplish this so quickly and effectively speaks well for the autistic community and the cross-disability rights movement. Thank you all for your support.

If you’d still like to indicate to PETA the need to avoid exploiting the autistic community in its future advertising, you can write to them at info@peta.org as well as call them at 757-622-7382 and dial 0. You can also sign our petition on this topic, further indicating to PETA and the world that it does not pay to try to attack and exploit the autistic and cross-disability communities.

Incidents like this show the need for a strong and activist autistic self-advocacy movement, working closely with the broader disability rights community. By uniting on issues like this one, we can work to address the persistent biases that pervades the public discourse about autism in specific and disability in general. As we speak, the blind community is uniting against false and offensive depictions of their community in the new movie, “Blindness”. Over the last few months, disability rights activists from all parts of the community came together to fight against outdated and damaging portrayals of people with intellectual disabilities in the movie, “Tropic Thunder”. Less than a year ago, the disability community united behind our successful effort to stop the NYU Child Study Center’s “Ransom Notes” ad campaign, which portrayed children with disabilities as kidnap victims.

Like any other community, we have the right to be treated with respect, in media, in service-delivery and in all aspects of society. While responses to offensive depictions of disability in popular culture are not the only battle in the broader struggle for equity, inclusion, quality of life and opportunity for all people with disabilities, this issue must remain an important priority. Culture helps to shape the reality we live in. By challenging the exploitative and offensive public discourse on disability we find today, we can advance a broader agenda for disability rights. The disability community is on the march and we will not be stopped. Thank you once again for your effective action on this issue. I look forward to working with all of you once again in the future. Remember, “Nothing About Us, Without Us!”

Wise words from Ari. And now my own vitriolic, childish but very satisfying contribution.

Autism genes = genius

6 Oct

Fascinating report in the Sunday Times yesterday about how the same genes that confer autism also confer the skills necessary for genius:

…a study of autism among 378 Cambridge University students..[]..found the condition was up to seven times more common among mathematicians than students in other disciplines. It was also five times more common in the siblings of mathematicians.

And this from Patricia Howlin:

Patricia Howlin, professor of clinical child psychology at the Institute of Psychiatry at King’s College London, studied 137 people with autism; 39 of them (29%) possessed an exceptional mental skill. The most common was outstanding memory.

She said: “It had been thought that only about 5%-10% of people with autism had such skills, but nobody had measured it properly, and it seems the number is far higher. If we could foster these skills, many more people with autism could live independently and even become high achievers.”

This, to me, is simply confirmation of two things that I believe in – firstly that autistic people have much more ability than people think and that respectful and appropriate education will help and secondly, the scientific method will always reveal the truth sooner or later. It cannot be hurried to be accurate. There is a saying amongst Web Developers when clients ask for the impossible – cheap, fast, good. Pick two. The same thing applies in science I think. You can have it cheap and fast and it won’t be good. Etc, etc.

This is yet more evidence that the continual doom and gloom about autism perpetuated from certain quarters simply isn’t reality. There are, in fact, key skills that our civillisation needs that it seems autistic people have in abundance (try and imagine a world without maths).

Respect, self-confidence, appropriate education. Pick three, please.

Why now, Jenny?

6 Oct

I try to stay away from mind reading. It is all too prevalent on the internet: “I know why so and so did such and such.” That said, who didn’t find the timing odd of Jenny McCarthy’s Amanda Peet attack and that really strange interview where Ms. McCarthy “forgives” Barbara Walters?

For those who have been lucky enough to miss this mess, here are brief timelines.

Amanda Peet gave an interview to Cookie Magazine for their August issue. It went online about July 10th. In that interview, she commented that people who don’t vaccinate are parasites. A week later (about July 17), Ms. Peet came out with an apology. I thought it was very well written, and have since been pleased to confirm that yes, indeed, Ms. Peet wrote it herself.

Fast-forward to September 30. That’s when Jenny McCarthy decided that it was time to make a public statement about the apology. That’s what, 7 weeks later? Of course, it’s also a week after Jenny’s book debuted.

Story line two: Let’s go all the way back to September, 2007. Jenny McCarthy is on “The View” for her first autism-book tour. Barbara Walters committed a terrible “sin”: she actually treated it like an interview and questioned Jenny McCarthy. I’d like to show you the video, but the video is now pulled from YouTube and the link to the video from the more recent story (which included the bit from “The View” also doesn’t seem to work anymore.)

Some short time after taping “The View” Ms. McCarthy was at a TACA picnic where she is said to have made some rather rude suggestions towards Ms. Walters.

Fast-forward to the present. On September 29th, Ms. McCarthy “forgave” Barbara Walters.

No, really. After Ms. McCarthy got a bit cross on the show and then took it out on Barbara Walters at the TACA picnic, she “forgives” Barbara Walters.

Boggles the mind, doesn’t it?

In that same interview, according to Ms. McCarthy (and only according to her, since Ms. Walters seems above responding to this), there was a bit of a heated exchange backstage with Ms. Walters after taping “The View”. Ms. McCarthy gives no indication of whether she (Ms. McCarthy) lost her cool at all.

But now, you see Ms. McCarthy understands what was going on with Barbara Walters. Remember that intro about “reading people’s minds”? Well, missing from the timeline above is the fact that Barbara Walters came out with, Audtion, a Memoir. In Audition, Ms. Walters discusses her life growing up with a special needs sister. Soooo, back to the mind-reading: Jenny McCarthy says that Barbara Walters was angry that she (Jenny) cured her son, while Barbara Walters had to go through tough times with her sister.

Yep.

Of course, did this “forgiveness” come out say, in May, when Audtion came out? No. Jenny McCarthy waited 4 months and “forgave” Ms. Walters…during the book tour for Warrior Mothers. (and after it was pretty clear that she wasn’t going to be a guest on “The View” this time).

Anyone want to guess how long before Jenny McCarthy apologizes to Ms. Walters for the rude statements?

Somehow I don’t think it’s going to happen. If I put on my mind-reading hat, I would say that these recent publicity events were, well, just that: publicity. Staged for the time when it benefited Ms. McCarthy.

I’m not shocked by the idea that a celebrity would work the press. Would anyone?

Let’s take another look at the timeline, shall we? Let’s take a look at how Jenny McCarthy’s book tours have created a buzz. As a measure, let’s use Google Trends. Google Trends gives you a rough idea of search engine traffic for specific terms. In this case, I chose “Jenny McCarthy” as the search term.

Let’s look back when Ms. McCarthy was doing the “Louder than Words” book tour, shall we? (click to enlarge)

It’s pretty impressive. For about 2 weeks, the search traffic was much higher than the average, reaching a peak of about 14 times the normal traffic for Jenny McCarthy.

Let’s expand this so we can see from 2007 to the present, shall we? (click to enlarge)

Google Trends for Jenny McCarthy 2007-2008

Google Trends for Jenny McCarthy 2007-2008

First, note that these data are week-by-week, not the day-by-day of the first figure. This smooths things out some, so the 14x peek we saw before is only about 7x in this graph. Still impressive. So, how about the traffic for “Mother Warriors”? I don’t see it either. Let’s zoom back in, but on the last 30 days. (click to enlarge)

Last 30 days Google Trends for Jenny McCarthy

Last 30 days Google Trends for Jenny McCarthy

(here’s the original graph from Google if you want to see it).

Warrior Mothers came out on the 23rd. See that little blip? This is a day-by-day trend, so we can compare to the first graph that showed a 14x spike in search traffic and a two-week increase. Instead, looks like it went up to about 1.7 and came back down fast.

But, wait, there’s another peak in early October? It goes to 4.

Remember those media events described above: the attack on Amanda Peet and the “forgiving” of Barbara Walters? Those happened on the 29th and 30th of September. After attacking Amanda Peet in the press, the Jenny McCarthy “buzz” went up.

Again, the timing is just too coincidental to suggest anything by a calculated decision by Ms. McCarthy.

Even though the buzz was low for Mother Warriors, this doesn’t mean that “Mother Warriors” is a flop. Supposedly it made “best seller” status.

As a rule of thumb, it takes about 100,000 copies of a book sold to get to be a “Best Seller”. As a second rule of thumb, that means about $350,000 for the author.

For “Louder than Words” Jenny McCarthy stated (if I recall correctly) that a portion of the proceeds would go to the UCLA autism program, if I recall correctly. I haven’t heard such a statement, or any statement about “Mother Warriors”.

Of course, she and Jim Carrey have been (and will almost certainly continue to be) proud supporters of Generation Rescue. They paid for a full page ad in USA Today–which I seem to recall being about $200,000. The thing is, I don’t consider that benefiting the autism community–or the community at large.

Jenny McCarthy’s potential for book profits are obvious. By improving her “brand” she also stands to gain from sales of her educational DVD’s and her soon to roll-out “Too Good by Jenny” products. That’s enough to set off conflict-of-interest alarm bells for many in the vaccines-cause-autism community. OK, that sets a pretty low bar, but you get the idea.

This sort of observation begs for comparison. As long as Jenny McCarthy is attacking Amanda Peet, let’s take a look at how much Amanda Peet makes from being a spokesperson for Every Child By Two and their Vaccinate Your Baby campaign.

ZILCH

Yes, that would be zero. As in nothing. As in she’s doing it because she thinks it’s the right thing to do. I somehow doubt the Generation Rescue crowd will believe that (or the fact that Amanda Peet wrote her own apology). They don’t seem to believe that anyone would act except out of financial self interest…well, except Ms. McCarthy. They also don’t want to admit that Paul Offit has no more conflict of interest, or acknowledge that he isn’t going to profit from Autism’s False Prophets. Seriously, I’ve seen them challenge whether he will actually donate the money.

A statement above sticks with me as I finish this post: Setting the Bar Low. When it comes to standards of behavior, yes, I think Ms. McCarthy has set the bar low. The question in my mind is this: Is she taking on the standards set by her organization or does she fit the organization because they have similar standards?

Sunday Solutions – No.3

5 Oct

Very quick one today as I’m busy with loads of stuff – mostly ScienceBlogs Book Club. Normal service resumed next week-ish 🙂

Jon Poling – no such thing as bad publicity

4 Oct

As broken by Kathleen and discussed further by Kristina, the Poling saga has taken another nasty twist and reveals the ‘respected’ Jon Poling as a scientist lacking even the most basic of scientific scruples.

In a series of three letters from Jon Poling, his co-authors Frye, Zimmerman and Shoffner and lastly Roger Brumback, the editor of the Journal that published their case study of Hannah Poling, Jon Poling is revealed as a man perfectly prepared to game the system.

In his letter, editor Roger Brumback says (he calls his letter ‘the Appalling Poling Saga’) he says:

In the United States Federal Register of May 21, 2003 (volume 68, number 98), on page 27829, there is an entry (“145. Terry and Jon Poling on behalf of Hannah Poling, Vienna, Virginia, Court of Federal Claims Number 02-1466V”) mentioning a filing under the National Vaccine Injury Compensation Program listing of petitions received. This occurred before the manuscript was submitted for consideration by JCN and clearly represents a conflict of interest. Yet the authors made a definitive statement to the Editor-in-Chief and to potential peer reviewers that there was no conflict of interest (Figure 1).

Let no one tell you any different. Jon Poling did not ‘forget’ to tell the publishing journal about the fact his daughter was part of the Autism Omnibus, he purposefully misled the Editor-in-Chief by stating conclusively there was no conflict of interest. Being a gentleman, Brumback avoids calling Poling an out-and-out liar. Brumback goes on to say:

Although, according to the leaked testimony (available to be viewed on numerous websites) [Brumback is referring to the testimony leaked to David Kirby – KL], it does not appear that the JCN article was used in the legal proceedings, media linkage of the published article to the legal outcome implies scientific support from JCN for this legal opinion. Of course it is possible to view this media exposure along the lines of the quip: “There is no such thing as bad publicity—just publicity”.

Quite.

Two things stand out for me – aside from this pathetic litany of dishonesty of course.

Firstly, Jon Poling is his letter says:

A third party subsequently leaked, without our knowledge or permission, my daughter’s
identity and the government’s concession report to the media.

Now lets have a look at this timeline. ‘The media’ Poling is referring to above is David Kirby who posted the details to the HuffPo on Feb 26.

Starting a bare 9 days later, the Polings are holding a press conference, being interviewed on Good Morning America, Larry King Live, Cable News Network, USA Today and The Atlanta Journal-Constitution.

Wow. I guess Brumback is right – there is no such thing as bad publicity because in little over a week, the totally non-media savvy Poling’s had managed to get themselves interviews on the leading media outlets in the USA. And they expect us to believe they did it ‘without our knowledge’ of the documents being leaked to quote Poling.

Something else really stands out from Poling’s letter. Its this:

2001. Because our daughter has diagnoses of autism, regressive encephalopathy, and mitochondrial dysfunction, her case was placed in the Omnibus Autism Proceedings.

Before HHS government physicians conceded that Hannah’s July 2000 vaccinations triggered her encephalopathy…..

Woah there…..what? Triggered her _what_ ? Encephalopathy? Thats funny because David Kirby and the anti-vaccine world has been swearing up and down the HHS conceded her vaccinations triggered her _autism_ .

This is a true bombshell. Jon Poling, Hannah’s father has just stated that HHS conceded vaccinations caused her encephalopathy as oppose to her autism. He’s quite clear and specific. In the first paragraph I quote he lists three separate things:

….autism, regressive encephalopathy, and mitochondrial dysfunction…

and in the second, he states which of these three HHS conceded was triggered by vaccinations. Encephalopathy. Not autism.

Next time anyone tells you HHS conceded Hannah Poling’s autism was caused by vaccines, point them here where they can read the words of her father.

The age of unreason

4 Oct

A news report yesterday stated that a new poll from the Florida Institute of technology College of Psychology and Liberal Arts had:

…found that 24 percent of respondents believe vaccines carry the blame for the wide range of developmental delays, known as autism spectrum disorders, and as a result, shy away from vaccinating their children. Another 19 percent said they were unsure about vaccines’ role.

Florida Today reports the Dean of College of Psychology and Liberal Arts called the results:

….a surprise given the number of federal studies exonerating the mercury preservative thimerosal, once used widely in children’s vaccines, but rarely, if ever, included in vaccines today.

I have no reason to doubt Dr. Kenkel’s surprise given that she is clearly not a big fan of quackery but I do wonder how she ever thought just the presentation of science in a journal would win the day. As Paul Offit has documented in Autism’s False Prophets and as discussed today in Science Buzz, the media bears a not insubstantial role in promoting the idea that vaccines cause autism. That coupled with the scientific illiterates at AoA and doing the rounds pushing their new book does a great amount of damage. Indeed, recent posts at the ScienceBlogs Book Club from both Orac and myself discuss ways of reaching more people with clearer information about vaccines.

Is this part of a wider trend of unreason across the West? A 2005 CBS Poll found that slightly more people rejected evolution than accepted it (51% to 49%).

In a separate poll, CBS reported that 48% of people believed in ghosts, with 1 in 5 stating they had felt the presence of, or touched, a ghost.

A Sci-Fi Channel poll (probably not the most unbiased source!) in 2002 found that a staggering:

….72 percent of Americans believe the government is not telling the public everything it knows about UFO activity, and 68 percent think the government knows more about extraterrestrial life than it is letting on.

Its easy to just laugh these people off as harmless weirdos but it makes me worry for the state of the West. And when it starts to affect not just national but international health and international autism research then we have a big problem.

What do we do? Now that the vaccine/autism connection has been revealed to traverse the same ground as creationism, ufology and ghost hunting how do we get it back?

Outcomes for autistic people

3 Oct

If I had a penny for everytime so know-nothing mercury zealot told me that by not chelating my autistic child (or HBOT/Lupron/Coconut kefir/Foot detox/clay bath/whatever) I was condemning xyr to a miserable life I could retire early.

My response has always been the same – ‘you’re full of what makes the grass grow green’.

I’m of the opinion that what makes the biggest difference to an autistic child’s educational prospects and hence their adult lives is how you teach them both formally (speech therapy etc) and informally (to be self-confident, to be told off when they are being naughty, to not feel that their stimmy behaviours are bad etc). So it was a pleasant surprise to come across this news article today.

She interviewed 41 adults, spending eight hours with the now 22- to 46-year-olds and their parents or spouses, assessing whether they would still be considered autistic, since the standard has changed. She tested their IQs and evaluated their quality of life.

McMahon and Farley were surprised to find half were doing better than what parents and teachers thought was possible. They had full- or part-time jobs. A few are married and have children. They have friends or acquaintances. One man is no longer considered autistic, having taught himself how to interact by watching movies and reading books.

I know what you’re thinking – these were adults with Aspergers syndrome, right? Well, no. These adults who were diagnosed with _autism_ between twenty to forty years ago (1968 – 1988) when the DSM II and then III would’ve been in effect.

DSM II (1968)
[autism was not mentioned; the word appears only under the following category]

295.8 Schizophrenia, childhood type

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.

DSM III (1980)

Diagnostic criteria for Infantile Autism

A. Onset before 30 months of age

B. Pervasive lack of responsiveness to other people (autism)

C. Gross deficits in language development

D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.

E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.

F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.

First things first. I severely doubt if _any_ of these adults received _any_ of what would be considered biomedical interventions today. Why? Simply because the idea that a vaccine could cause autism wasn’t around in 1968 – 1986. The youngest would’ve been twelve when Wakefield first started his foolishness.

So what we have, it would seem, is a 50% ‘recovery’ rate (based on what biomeddlers consider recovery) with the only basic interventions being education and time. One of the subjects is interviewed:

Pond says he felt alone and unaccepted growing up. Struggling to understand what was going on in grade school, he would blank out so intensely that adults worried he was having seizures. As a teen, he wished he could take a pill to make his disorder disappear.

Something else that wasn’t around so much in those days was a neurodiversity movement. If there had of been, maybe this poor guy would’ve been able to realise that people who would accept him were there. Its testament to his own strength and will (and the support of his parents no doubt) that he made it to where he is now.

But – there’s always a but – this same follow up found that 50% of these people:

But the other half live in group homes or with parents. They may have jobs but need supervision. They have few to no friends. One works as a janitor two hours a day and returns home to his rituals: watching movies and routinely checking for the mail.

Not ideal, but to be honest, its hardly terrible either. I very much look forward to the study being formally published. In the meantime, this is yet more evidence of the innate strengths autistic people have. Its much deeper and much more pronounced than anyone could ever have thought.

Mental Health Insurance Parity in the U.S.?

2 Oct

One of the big issues in the U.S. autism communities right now is health care. Without insurance coverage, most people don’t really have health care, so healthcare=insurance for all practical purposes.

People with autism can be expensive from a health care perspective. The most obvious examples of this are for children who need occupational, speech and, sometimes behavioral therapies. Even just counting the speech and occupational therapies, bills can hit $20,000 or more a year for a single child.

Insurance plans tend to exclude these therapies for one reason or another. “Developmental delays” aren’t covered, for example. Since autism is often covered under mental health, there are multiple ways to not give coverage.

This has led some states to implement “Mental Health Parity” acts. These require an insurance plan to give the same coverage for Mental Health as for regular health issues. So, if, say, a stroke victim would be given speech therapy 3 times a week for years to help recover speech, the insurance plan would have to give the same therapy to a person with autism (to pick the example most people reading this blog would key in on).

There are two big problems (and a lot of little problems) with this. First, and most obviously, only a few states have implemented Parity legislation. So, if you are in California, you may have coverage, but if you are in, say Nevada (right next door) you probably don’t.

There has been a big push this year to get more states to join in. But, even if all the states had Parity laws, there’s still another big fly in the ointment: big companies don’t need to follow state laws on insurance.

Yep. Let’s say you work for ReallyBigCompany in a state with a Parity law. You think, “Aha, they just passed a law, I’m in!”. Not if ReallyBigCompany is what’s called “Self Funded”. That’s where the company insures itself. In that case, they fall under a U.S. Federal law: ERISA.

It get’s confusing quick, but at a simple level, large companies have a loophole to get out of covering autism.

If only the Federal laws (ERISA) had mental health parity.

Enter Patrick Kennedy, congressman from Rhode Island. He has sponsored H.R. 6983, The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act.

This act sets out to

…amend section 712 of the Employee Retirement Income Security Act of 1974, section 2705 of the Public Health Service Act, and section 9812 of the Internal Revenue Code of 1986 to require equity in the provision of mental health and substance-related disorder benefits under group health plans, and for other purposes.

The Employee Retirement Income Security Act being…ERISA.

Yep, it’s possible that there could be a big change in the insurance world.

The bill has passed the House. According to DrugMonkey, the bill has been added to the economic bailout package in the Senate.

According to Speaker Pilosi’s website.

An Overview of the Bill’s Key Provisions

Requires equity in financial requirements. Under the bill, an insurer or group health plan must ensure that any financial requirements – such as deductibles, copayments, coinsurance, and out-of-pocket expenses – applied to mental health and addiction benefits are no more restrictive or costly than the financial requirements applied to comparable medical and surgical benefits that the plan covers.

Requires equity in treatment limits. Under the bill, a group health plan must ensure that the treatment limitations – such as frequency of treatment, number of visits, and days of coverage – applied to mental health and addiction benefits are no more restrictive than the treatment limitations applied to comparable medical and surgical benefits that the plan covers.

Does not mandate mental health benefits. The bill does not mandate insurers or group health plans to provide any mental health coverage. The bill’s provisions only apply to plans that choose to offer mental health coverage.

Exempts certain businesses. The bill exempts small businesses with 50 or fewer employees. It also exempts those businesses that experience an overall premium increase of 2 percent or more in the first year and 1 percent in subsequent years.

Does not mandate out-of-network benefits. The bill simply states that if a plan already offers out-of-network benefits, it must offer out-of-network benefits on the same terms for mental health services as it does for medical and surgical services.

Does not pre-empt stronger state parity laws. The bill establishes a federal floor but permits states to go further to protect their citizens. This bill would not supersede any state law that provides consumer protections, benefits, rights, or remedies stronger than those in the bill.

Explicitly permits medical management of health benefits. The bill allows the use of medical management tools that are based on valid medical evidence and pertinent to the patient’s medical condition so that specific coverage is not arbitrary in its application and more transparent to the patient.

Provides for enforcement. The bill provides remedies to protect beneficiaries’ rights and permits enforcement of the bill’s equity requirements by the Internal Revenue Service, the Department of Health and Human Services, and the Department of Labor.

This appears to this reader to include a classic loophole: the “carveout”. Note that: “The bill does not mandate insurers or group health plans to provide any mental health coverage“. That means (a) your company can opt to only offer regular health insurance and (b) (the biggie) they could offer two health plans, mental health and regular health.

Why is that important? If you have two plans, there is no parity. It’s more strange legal stuff, but let’s do this as an example: Your company offers you ReallyBigCompany_Health and ReallyBigCompany_MentalHealth as two separate plans. The whole idea of “Parity” is that you get the same benefits for the mental health conditions as for regular health–in the same plan. Since your mental health plan (in this example) is not the same as your regular health, you have no regular health benefits to compare with.

That took me a while to get, so don’t worry if you are confused the first time.

Bottom line–it is possible that the insurance outlook in the U.S. could take a big change. I know people who have been trying to get confirmation that autism is covered in this bill. Unlike some State laws, the Federal law doesn’t specifically name any conditions. This should be a good thing, since, for example, they can’t say, “the law says Autism, and you have PDD-NOS…sorry”.

This is something to watch.

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