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Another weak study “proves” vaccines cause autism

17 Sep

I am constantly amazed at the low level of proof people use to demonstrate that vaccines cause autism.

Case in point, David Kirby and his recent post on the Age of Autism blog (and, a I write this, The Huffington Post).

He takes an abstract from a poster session and declares victory in the war to prove vaccines cause autism.

Here’s the abstract:

HEPATITIS B VACCINATION OF MALE NEONATES
AND AUTISM
CM Gallagher, MS Goodman, Graduate Program in Public
Health, Stony Brook University Medical Center, Stony Brook, NY
PURPOSE: Universal newborn immunization with hepatitis
B vaccine was recommended in 1991; however, safety
findings are mixed. The Vaccine Safety Datalink Workgroup
reported no association between hepatitis B vaccination
at birth and febrile episodes or neurological adverse
events. Other studies found positive associations between
hepatitis B vaccination and ear infection, pharyngitis, and
chronic arthritis; as well as receipt of early intervention/
special education services (EIS); in probability samples of
U.S. children. Children with autistic spectrum disorder
(ASD) comprise a growing caseload for EIS. We evaluated
the association between hepatitis B vaccination of male
neonates and parental report of ASD.
METHODS: This cross-sectional study used U.S. probability
samples obtained from National Health Interview Survey
1997–2002 datasets. Logistic regression modeling was used to
estimate the effect of neonatal hepatitis B vaccination on
ASDrisk amongboys age 3–17 years with shot records, adjusted
for race, maternal education, and two-parent household.
RESULTS:Boyswho received the hepatitis B vaccine during
the first month of life had 2.94 greater odds for ASD (nZ31
of 7,486; OR Z 2.94; p Z 0.03; 95% CI Z 1.10, 7.90)
compared to later- or unvaccinated boys.Non-Hispanicwhite
boys were 61%less likely to haveASD(ORZ0.39; pZ0.04;
95% CIZ0.16, 0.94) relative to non-white boys.
CONCLUSION: Findings suggest that U.S. male neonates
vaccinated with hepatitis B vaccine had a 3-fold greater risk
of ASD; risk was greatest for non-white boys.

What did they do? They looked at data from the National Health Interview Studies, and looked at autism and hepatitis B vaccination. They used surveys from 1997 to 2002, with children aged from 3 to 17.

Mr. Kirby was kind enough to post an image of the poster to the EOHarm group.

The autism group had 33 kids total. Of these, 9 of 31 (29%) were given the HepB vaccine. Compare this to 1,258 of 7,455 (17%) of the non-autism group who were given the HepB.

9 out of 31.

Are the red flags up yet? They should be.

Take for example kids aged 17 in the 1997 survey. When were they born? That’s right, 1980.

When was the Hepatitis B vaccine introduced? 1991. According to Mr. Kirby himself, the HepB vaccine didn’t get fully implemented until about 1996.

A lot of the kids were born before the “epidemic” of autism. No one disputes that the number of people identified with autism has gone up significantly in the last 30 years.

So, pretty much anything that changed in that time would “correlate” with autism.

This is how we get studies that “show” that Cable TV causes autism. And, now, the Hepatitis B vaccine causes autism.

Diagnostic change and the increased prevalence of autism

11 Sep

ResearchBlogging.orgHow real is the “epidemic” of autism? How much of the increase in the number of diagnoses have to do with factors other than a real increase in the number?

I am going to take some time with this paper. If you want the short version of this post–about 26% of the increase in autism counts in California can be attributed to changes in diagnositic practices leading to people being classified autistic (or autistic plus MR) who were classified with mental retardation by pre-1992 standards.

Perhaps the most used dataset for exploring the increase in autism, especially by amateur epidemiologists, is that of the California Department of Developmental Services, or CDDS. The CDDS serves people with developmental disabilities (not just autism) within the state of California. The CDDS made much of its data freely available. While the CDDS data show a large increase in the number of people getting services for autism as a developmental disability, it is difficult to ascertain how much (if any) of this is due to a real increase in the number of people who actually are autistic. This is because it is very hard to know how important external factors are in changing the administrative prevalence of autism.

Many factors influence the prevalence of autism. These include broadening of the criteria for what is called “autism”, such as the change in the 1990’s to include PDD-NOS and Asperger Syndrome in the Autism Spectrum Disorders.

Recently, Hertz-Picciotto and Delwiche found that “three artefacts—younger age at diagnosis, change in the accepted criteria and inclusion of milder cases—accounted for about one-third of a 12-year rise in incidence in California.”

Many people have misrepresented Hertz-Picciotto and Delwiche as showing that there has been a “true” increase in the autism prevalence when, in fact, they state quite clearly “Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.”

One of the artifacts that was not quantified by Hertz-Picciotto and Delwiche was the possibility of diagnostic change and accretion. When diagnostic practices change, a person who would have one diagnosis in one time period might get a different diagnosis in another.

For example, a common question that comes up is this: how many people diagnosed with autism today would have been given a diagnosis of mental retardation 20 years ago?

That is essentially the question posed by Marissa King and Peter Bearman of Columbia University in the paper
The paper, Diagnostic change and the increased prevalence of autism
.

This has the possibility to be a very important paper. I don’t think I am stretching when I state this as this paper was published together with commentary from no fewer than five four well known research groups.

Here’s the abstract:

Background Increased autism prevalence rates have generated considerable concern. However, the contribution of changes in diagnostic practices to increased prevalence rates has not been thoroughly examined. Debates over the role of diagnostic substitution also continue. California has been an important test case in these controversies. The objective of this study was to determine the extent to which the increased prevalence of autism in California has been driven by changes in diagnostic practices, diagnostic substitution and diagnostic accretion.

Methods Retrospective case record examination of 7003 patients born before 1987 with autism who were enrolled with the California Department of Developmental Services between 1992 and 2005 was carried out. Of principal interest were 631 patients with a sole diagnosis of mental retardation (MR) who subsequently acquired a diagnosis of autism. The outcome of interest was the probability of acquiring a diagnosis of autism as a result of changes in diagnostic practices was calculated. The probability of diagnostic change is then used to model the proportion of the autism caseload arising from changing diagnostic practices.

Results The odds of a patient acquiring an autism diagnosis were elevated in periods in which the practices for diagnosing autism changed. The odds of change in years in which diagnostic practices changed were 1.68 [95% confidence interval (CI) 1.11–2.54], 1.55 (95% CI 1.03–2.34), 1.58 (95% CI 1.05–2.39), 1.82 (95% CI 1.23–2.7) and 1.61 (95% CI 1.09–2.39). Using the probability of change between 1992 and 2005 to generalize to the population with autism, it is estimated that 26.4% (95% CI 16.25–36.48) of the increased autism caseload in California is uniquely associated with diagnostic change through a single pathway—individuals previously diagnosed with MR.

Conclusion Changes in practices for diagnosing autism have had a substantial effect on autism caseloads, accounting for one-quarter of the observed increase in prevalence in California between 1992 and 2005.

The authors started by looking at the individual records for the 7003 clients of the CDDS born before 1987 who had diagnoses of autism at any time in their CDDS records. These individuals would be at least 8 years old by the time the DSM-IV criteria for autism came out in 1994, so they should have already been diagnosed with autism by that time.

What they found was that 631 individuals started out with a diagnosis of mental retardation and later received a diagnosis of autism. 95% of these individuals retained the MR diagnosis. I.e. most moved from “autism” to a dual diagnoses of autism+MR.

They also found that 89 individuals “lost” their autism diagnosis. They are not discussed in detail, so we can’t tell if they held other diagnoses after “losing” their autism diagnosis.

The authors plotted the number of individuals who changed from MR to autism or autism+MR by year. They claim that the number is higher in years when significant changes in diagnostic practices were introduced.

Figure 1 from King and Bearman paper

Figure 1 from King and Bearman paper

A peak is fairly clear for 1994, when the DSM-IV was issued. Whether this peak and the others are real is a matter for discussion (as in Dr. Hertz-Picciotto’s commentaruy)

Some of the findings the authors reported are very interesting.

Examining the control variables, we see that the level of intellectual impairment of clients had a significant effect on the likelihood of observing diagnostic change. The relationship between severity and the odds of change appears to be non-linear with moderate and profound severity to be at greatest risk for diagnostic change.

The CDDS lists intellectual impairment by the categories mild, moderate, severe and profound. It strikes me as strange that mild ID is not the area with the highest odds of change. It is very strange that there is no clear trend that the odds of change/accretion go up (or down) with severity of intellectual disability.

Another interesting observation:

Changes in evaluation scores, which capture many of the requirements for an autism diagnosis, surprisingly had little discernable effect on the likelihood of diagnostic change [OR 1.02; 95% confidence interval (CI) 1.00–1.04].

This is quite strange to me as well. One would think, perhaps, that the lower the evaluation score, the more likely that someone would have been undiagnosed.

Or, to put it another way, why weren’t the more “obviously” autistic individuals identified before the diagnostic changes?

Finally, race and year of birth were also significantly associated with the odds of change. Persons born in later years, who were younger, were more likely to experience diagnostic accretion or substitution. Finally, African–Americans
were considerably less likely than Caucasians to have a change in diagnostic status.

To me, this speaks to the idea that not everyone who qualifies for an autism diagnosis under the changes is getting one. I.e. the CDDS still has a clients in this older cohort who are misclassified as MR instead of autism. For example, 0lder clients are less likely to have a family member to advocate for them, and are less likely to see a change in services under autism vs. MR classifications.

The authors then take this “micro level” data (looking at individuals) and apply their findings on a “macro level” (looking at groups of people). In other words, the usethese data to predict how much of the increase in CDDS caseload is due to this one pathway–shift from MR to autism. The results are shown in Figure 4, copied below.

Figure 4 from King an Bearman paper

Figure 4 from King an Bearman paper

They find that by 2005, 26% of the increase in the CDDS caseload can be attributed to the shift from MR to autism.

One important point the authors make is the difference between diagnostic substitution and diagnostic accretion. An example of substitution is an individual having his/her diagnosis change from MR to autism. An example of accretion is when an individual has autism added to the already existing MR diagnosis.

Accretion is harder to discern on a group (macro) level, since one would not see the MR count drop coincident with the autism increase. The authors have included both in their definition of diagnostic change.

The authors note that the MR to autism pathway is not the only possibility.

Diagnostic substitution and diagnostic accretion along other pathways, such as developmental language disorder or other learning disabilities, may be contributing to an increase in higher functioning cases. In a study applying contemporary diagnostic standards and practices to persons with a history of developmental language disorder 21% (8/38) of the individuals met the criteria for autism and 11% (4/38) met the criteria for milder forms of ASD. Thus, there are multiple pathways to an autism diagnosis from multiple disorders that contribute to increases along various parts of the spectrum. In this article, we have considered only one pathway and one part of the spectrum

In other words, more of the increase in the CDDS caseload may be due to diagnostic changes, but in ways not covered by this paper.

One factor the authors do not appear to be taking into account is the large regional disparities within California. The administrative prevalence in the CDDS system varies wildly depending on which part of the stat one looks at. In general, rural areas have much lower administrative prevalence values than urban areas, for example.

The authors’ concluding paragraph:

We have estimated that one in four children who are diagnosed with autism today would not have been diagnosed with autism in 1993. This finding does not rule out the possible contributions of other etiological factors, including environmental toxins, genetics or their interaction to the increased prevalence of autism. In fact, it helps us to recognize that such factors surely play an important role in increasing prevalence. There is no reason to believe that any of these frameworks are wrong and many reasons to believe that the increase in autism prevalence is in fact the outcome of multiple self-reinforcing processes. However, this study demonstrates that subsequent explanations for the increased prevalence of autism must take into account the effect of diagnostic change.

I think this is quite good–the paper does not rule out a true increase in autism prevalence. It does demonstrate that factors like diagnositic change and accretion are real and significant.

Many factors are involved with the increase in autism prevalence, including that in the CDDS data. Just because the number of people identified with autism went up doesn’t mean that all of that number is due to a real increase in the number of people who are autistic.

King, M., & Bearman, P. (2009). Diagnostic change and the increased prevalence of autism International Journal of Epidemiology DOI: 10.1093/ije/dyp261

Andrew Wakefield gives NBC “talking points”

11 Sep

Dr. Wakefield “took issue” with a recent Dateline episode discussing him and his work. Thoughtful House (his clinic) has offered Dateline some talking points to, I gather, give “the full story” that Dateline supposedly missed.

Since there is next to zero chance that Dateline will act on them, I thought I would take a look at the talking points:

A. There has been extensive replication of the finding of bowel disease in children with autism (ASD) from five different countries. These findings have been published in peer-reviewed journals or presented at scientific meetings. It is therefore incorrect and misleading of Matt Lauer to have stated that every aspect of my original hypothesis has been disproved. On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. This obvious inaccuracy requires clarification by NBC.

One of my many failings is that I am a sloppy writer and, yet, I key in on imprecise language in the work of others. Case in point:

“On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. ”

“…the main point of the Lancet paper, bowel disease in autistic children…”

Very imprecise. What about bowel disease in autistic children is the finding of the Lancet article that Dr. Wakefield wants us to know? The statement is so vague that all we are left with is the fact that some autistic children have bowel disease.

This is misdirection on Dr. Wakefield’s part. It isn’t even good misdirection. The Dateline story wasn’t “the career of Andrew Wakefield, what he got right and wrong”. It was about the assertions that MMR cause autism.

Dr. Wakefield makes it appear that this statement was Matt Lauer’s. It is a fine point, but Matt Lauer didn’t state that “…every aspect of my original hypothesis has been disproved”. The statement was from the American Academy of Pediatrics, which Matt Lauer quoted with attribution.

It’s worth recalling what the Lancet paper stated. The concluding paragraph of the 1998 Lancet article was:

We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.

Had Dr. Wakefield himself distanced himself from the MMR-causation theory in the last 10 years, even a little, I’d think it reasonable for him to emphasize the the idea that he brought to light GI disturbances in autistic kids. But he hasn’t. It isn’t what the Dateline story was about.

The big question, if he thought this was important, why didn’t Dr. Wakefield himself emphasize that in the interview?

Dr. Wakefield’s second point:

B. The shortcomings and the flaws of the studies quoted by Dr. Offit, claiming to disprove an association between vaccines and autism, were not discussed in the program. In my interview with Mr. Lauer I took as an example a paper from Dr. DeStefano from the CDC claiming to exonerate MMR that actually showed that a younger age of vaccination with MMR is associated with a greater risk of autism. This study confirms the association and has been falsely portrayed as vindicating the vaccine. This should have been included in order to provide balance to the program.

Can someone tell me what DeStefano paper and what analysis he is talking about?

C. Reference was made to an autistic child in the vaccine court whose claim for MMR damage was overturned by the judge. No reference was made to the successful vaccine court case on behalf of the child Bailey Banks, coming just one week after the unsuccessful claim described by Mr. Lauer, in which the judge ruled that MMR vaccine can cause autism. Therefore, in the view of vaccine court, it is not a question of whether or not MMR can cause autism, but rather how many children are affected.

The case referred to in the Dateline episode was that of Michelle Cedillo. Her’s was the first “test case” to be heard by the Autism Omnibus Proceeding.

Her case was first heard by a “special master”, who denied compensation. The case then was appealed, and the judge didn’t “overturn” anything. The judge upheld the original decision.

The Bailey Banks case is one that gets debated a lot on the net. Rather than go into that again, let’s ask: how does this relate to Dr. Wakefield’s research? Perhaps I missed it as I did some very quick searches, but I didn’t find anything in the Bailey Banks decision that had anything to do with digestion/inflamation/enterocolitis/constipation/diarrhea… I think you get the idea–the case has nothing to do with Dr. Wakefield’s ideas about autism and the gut.

I.e. Wakefield’s point C is another diversionary tactic.

D. There was a complete absence of comment on the lack of any adequate safety studies of childhood vaccines and the vaccine schedule in particular. There was no mention of the admission by vaccine regulators that there is no data on the long-term safety of vaccines, the chronic disease burden caused by vaccines, and the likely potentially harmful interactions between various vaccines in the routine schedule.

Have you heard the phrase “diversionary tactic” too often yet? What does any of this have to do with whether Dr. Wakefield’s research? This is a favored diversion in online discussions of vaccines/autism. When people run out of real ammunition (and they do quickly), switch to trying to debate general safety of vaccines–and it almost worked. Instead of addressing some of your comments, I’ll move on to your fifth point:

E. Undue credibility was given to Brian Deer, a discredited freelancejournalist, whose false reporting has caused so much misunderstanding and damage to children through the misrepresentation of the doctors and parents who were seeking answers to the vaccine-autism question. Deer has repeatedly misled the public and the medical profession and has been unable to respond to clear evidence of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.

Nice slam, there, Dr. Wakefield. Given the sloppy nature of your previous comments, I am impressed that you pulled this together so well.

You make it seem like it is accepted that Brian Deer is “discredited”. I guess if you don’t get out of Thoughtful House or autism-parent conventions, you might think that.

The “unable to respond…” bit is pretty classic. The Press Complaints Commission isn’t hearing the complaint until after your own GMC hearing, correct? So, I guess he has been unable to respond at the PCC. But, did that really stop him from responding? I seem to recall a pretty sharp worded response that Orac hosted on Respectful Insolence.

Didn’t you, Dr. Wakefield, bring that complaint to the PCC? If so, nice job leaving out the fact. It would come across quite differently had you stated: “…and has yet been unable to respond to clear my claims of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.”

F. It was not disclosed that I have repeatedly invited Dr. Offit to take part in public debate on the safety of MMR vaccine and the false and misleading claims that he has made in the media and his book. He has refused to accept this invitation and has continued to hide from an open and honest debate.

Why would NBC waste time on this? Was it pertinent to the discussion? Answer: no.

I think they did you a favor by not mentioning it. No one looks good with the “So and So won’t debate me” argument. They just don’t. The “please debate me” argument is a staple of the crank. I doubt you wish to appear to be in that category, do you?

Academics “debate” in the literature, not on some stage. If you want to debate Dr. Offit, come up with some good research. Publish it.

Alternatively, if you want to see how a Wakefield/Offit debate comes out, read “autism’s false prophets”. If that is “hiding”, he hasn’t done a very good job of it.

G. NBC alluded briefly to the fact that Richard Horton, editor of The Lancet, was informed of my participation as a medical expert in the MMR litigation almost one year before publication of the Lancet paper in 1998. NBC failed to clarify that when Horton was challenged to respond to the fact that when he so enthusiastically denounced me and the paper in 2004 the Lancet staff was already fully aware of the facts and at that time did not consider them to be relevant. Horton refused to be interviewed by NBC and the interview segment shown was from 2004. This refusal is in sharp contrast to his willingness to denounce me in the media in 2004. NBC also failed to mention that in the light of these facts Horton has been reported to UK’s General Medical Council on an allegation of perjury.

Even if true, this is just more diversions. If you thought it important enough to fax all this information to the Lancet, why didn’t you include a conflict of interest statement in the article itself? The referees would have appreciated that, I believe. Was there any mention of potential conflicts of interest in your cover letter to The Lancet when you submitted the paper? Or in the cover letter for your acceptance? All of those were places where you should have made such statements.

H. It was unfortunate that NBC, having stated their determination to resist external pressure to distort the balance of the program, yielded to such pressure from the American Academy of Pediatrics, allowing them the final word in the program while denying representation from the National Autism Association who put forward to NBC a rational and well reasoned call for further science to resolve this very real issue.

I’m sorry, but are you seriously putting he “National Autism Association” on equal footing with the American Academy of Pediatrics? How many members does the NAA have? (a lot less than the AAP) What is the name of their journal (they don’t have one) What is the impact factor of their journal? (Pediatrics is a very well respected journal).

Given the NAA’s recent childish antics with their attempted slime job against Dr. Offit (which you, Dr. Wakefield, participated in), I think that Dateline has been proven correct for not airing their comments.

I. Dr. Offit cited a large population study of autism and MMR from Denmark in support of his claim to ‘certainty that there is no link.’ This study was so flawed that it was rejected from consideration by the gold standard scientific review by the highly influential Cochrane Collaboration. Dr. Offitt, who is not an epidemiologist, was clearly at a loss to understand the study’s fatal flaws.

“Dr. Offitt, who is not an epidemiologist…” What’s up with that comment? I’m sorry, is Dr. Wakefield an epidemiologist? Answer: no. Do you have to be an epidemiologist to understand the study or it’s strengths or flaws? No.

What fatal flaws is Dr. Wakefield referring to? The big Danish study was by Madsen, et al.. The Cochrane Review lists this study as one of the “cohort studies included in the review”. Not “rejected from consideration”.

That aside, I have the Cochrane Review “Vaccines for measles, mumps and rubella in children (Review)” open. The version I have open is noted: “This is a reprint of a Cochrane review, prepared and maintained by The Cochrane Collaboration and published in The Cochrane Library 2009, Issue 3”, so I think it is the most recent.

I guess if the Cochrane review is “highly influential” and the “gold standard” it would make sense to see what they think of the autism/MMR hypothesis, eh? The review states:

No credible evidence of an involvement of MMR with either autism or Crohn’s disease was found.

Was this because they didn’t know about Dr. Wakefield’s work? Hardly. Four of Dr. Wakefield’s papers were listed. All were listed in the “excluded studies” section.

So where does this leave us? We have, what, nine talking points which are mostly diversions or misrepresentations. Anyone wonder why I don’t think Matt Lauer will be responding to these soon?

Autism Epidemic? Not in the NSCH data

17 Aug

There is an epidemic of vaccine-induced autism. Must be, we’ve been hearing this for about 10 years. During that time, many datasets have been manipulated to “prove” the epidemic. The two datasets that come to mind most readily are the U.S. special education data (IDEA data) and the California Department of Developmental Services data (CDDS). Neither were intended for true epidemiology.

That intro should be a warning: be prepared for more armchair epidemiology. Interested in the short answer? A new dataset is out that just doesn’t fit the idea of an “epidemic” of vaccine induced autism. No huge increases in autism counts.

The new dataset available is the 2007 National Survey of Children’s Health. The NSCH data includes questions about autism. So it should come as no surprise that it was spun into support for the “epidemic” already.

As a bit of background, let’s start with the US special education data. It’s a favorite dataset for those pushing the epidemic. Here’s a graph hosted on the Thoughtfulhouse website (click to enlarge):

special ed data supposedly showing an epidemic

special ed data supposedly showing an epidemic

Wow. That’s an epidemic. 16 year olds have an “incidence” (their word) of 0.4 per 10,000 while younger kids are at nearly 20? That’s an increase of 50 times. Impressive. Until we look at the NSCH data.

By coincidence the Thoughfulhouse data are from 2007, the same year as the NSCH data. What happens if we plot the NSCH data like the graph above? Again, click to enlarge. Sorry, I couldn’t format it to look just like the ThoughtfulHouse graph.

National Child Health Survey data on autism

National Child Health Survey data on autism

Doesn’t even look close to the data on the Thoughtfulhouse website. First, the “incidence” numbers for around age 16–0.4 for ThoughtfulHouse’s graph, 93 for the NSCH data. I wanted to graph the data on the same graph, but the newer, NSCH numbers just dwarf the IDEA numbers that ThoughfulHouse used.

Besides the difference in overall magnitude, what about the “epidemic”. What about the huge increases in autism “incidence” or “prevalence”. Numbers like 273% increase, or more, in autism are commonly quoted for the increase in autism diagnoses in the 1990’s. Well, those increases just aren’t observed in the NSCH data. Keep in mind, the 17 year olds in the NSCH data graph were born in 1990. There just isn’t the dramatic increase in an autism count in those data.

There is a a much smaller trend of increased autism count when moving from about age 17 down to about 12. The “incidence” increasing by about 40%. That’s a big number. Not hundreds of percent, but a big number.

The “incidence” goes down for younger kids–which must be partially or completely due to the average age of diagnosis being about 5. There is at least one blogger who is “sparking the debate” that this could be a sign that the removal of thimerosal has resulted in lower autism counts. The same blogger has stated at different times that we should have already seen any drop in the CDDS data and, later, that we won’t be able to see any trends until sometime well past 2010. That’s covering your bases! Either we saw it already, we are seeing it now, or we need to wait until the future to see it.

But, back to the NSCH data. Pretty much, those data are flat for birth year 1995 to 2003. Noisy but flat. That’s when the “epidemic” was in full force.

Or, another way to put it–there is no good evidence of an epidemic in the NSCH data.

Evidence of autism recovery

14 Aug

There’s evidence of autism recovery on a vast scale. That is what we are being told by bloggers covering the latest survey from the National Survey of Children’s Health. The survey showed that some parents are told that their kid is autistic, but the kid doesn’t isn’t currently autistic.

The survey is an intersting thing. They call homes and ask a lot of questions about one of the kids in that home. The questions are not just about autism, but about lots of medical topics. They do this survey every few years.

They added some new questions to the survey this time. In the past they just asked if your kid had autism. Now, they have a two part question:

Has a doctor or other health care provider ever told you that [the child] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder?

followed by

does [the child] currently have autism or ASD

Many of the people who responded “yes, someone told me my kid had an ASD” later responded “No” to “does you child currently have Autism or an ASD”.

Bloggers are saying this means that kids “lost their original diagnosis”. Well, we can’t say that. We don’t know what the *original* diagnosis was. Consider this. We don’t know if a kid had a diagnosis of developmental delay, then someone suggested autism, then later retracted the autism on a formal diagnosis. In that example, the kid still has his “original” diagnosis: developmental delay.

I can feel the eyes rolling as people think, “there he goes, trying to weaken the evidence of recovery with vague statements”.

So, let’s look a data. Let’s dig a little deeper than most. I’m not so good at SAS (the statistical package that is used to read the data), but I think I did OK. Let me know if you catch a mistake and I will correct it.

How many kids had a diagnosis (or just a statement) that they were autistic?

Answer: 1427

How many kids were told they were autistic and later were told they were not?

Answer: 459. About 1/3 of the total.

People stop there and leave it implied that the kids don’t have any diagnoses any more. Bad assumption. Let’s check on that. Let’s look at some of the other diagnoses given in the NCHS.

How many of the 459 now have other diagnoses? Here’s a sample of a few other diagnoses:

219 Developmental delay
27 Speech delay and no developmental delay
8 Brain injury and no developmental delay
65 ADHD and no developmental delay

There may be some crossover between, say speech delay and brain injury or ADHD, but for simplicity I’ll just add them all together to get:

319 of 459 (70%) have one of the diagnoses I listed.

A more simple check: how many of the 459 need supports in school? 97%. All but 14. Yes, parents are being told that their kids “have autism” and the parents are later finding that the kid does not “have autism”. That doesn’t mean that the kids are “recovering”.

Is it possible these kids really qualified for an autism diagnosis at one time? Sure. But, I would assert it is as likely or more that a lot of misdiagnoses were made. That’s if autism diagnoses were ever made. Remember that question?

Has a doctor or other health care provider ever told you that [the child] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder?

Well, if you pediatrician said, “I think this kid may have autism. Go see a psychologist”, may parents would anwer “yes” to the question. The kid wasn’t diagnosed. Pediatricians can’t diagnose. But his parents were told he/she had autism.

Be that as it may, the bottom line: the idea that the NCHS data shows that kids are recovering from autism is weak at best. The data certinainly doesn’t show kids recovering from autism and becoming typical. Most of the “recovered” kids still have a diagnosis of some sort. Almost all are receiving some sort of support in school.

There is more information in the dataset. A couple of blog posts more, at the least.

It’s time for David Kirby to disavow the autism epidemic

3 Aug

The idea that mercury caused an epidemic of autism is both wrong and very damaging to the autism communities. Many contributed to this damaging notion., but David Kirby without a doubt carries a good quantity of the blame for his book “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy” and efforts since.

Mr. Kirby often tries to hide behind the notion that he is just “trying to spark a national debate”. Sorry, but that is nonsense. He actively promotes the idea that vaccines cause autism. It is unclear to this reader whether Mr. Kirby is currently being paid for his efforts. In the past he cherry picked information and packaged it in seemingly self-consistent packages to convince people that an epidemic did occur.

He has now moved to a tag-team approach for presentations to the US congress. He presents information to support the idea that vaccines could cause autism. He then let’s Mr. Mark Blaxill take over to promote the epidemic with the old, tired arguments.

It’s like Mr. Kirby still wants to be able to say, “I never really said there was an epidemic. I was just sparking a discussion.” It’s Mark Blaxill that is actually calling it an epidemic.

Nonsense.

This has been bothering me for some time. It came up again strong when Mr. Kirby commented on a blog piece. David Kirby doesn’t generally participate in the online discussions-even to the point of not answering comments on his own blog pieces. He broke that tradition recently in a blog piece on the Mother Jones website: Breaking: Vaccines still don’t cause autism

My response to Mr. Kirby incorporated much of what I was considering for a future blog post. So, rather than paraphrase what I wrote, here it is in full:

Mr. Kirby,

I see your usual arguments above. I see, also, the usual gaps in your discussion. Over the years, you have gone from promoting the “vaccines caused an epidemic of autism” to dancing around the subject of the false “epidemic”, neither stating that there was an epidemic, nor admitting your mistake. Could you comment somewhere, on the record: was there an “epidemic” of autism caused by mercury? You seem to leave that to your colleague, Mr. Blaxill, giving yourself some form of plausible deniability. It is irresponsible.

You rely heavily now on the NVAC recommendations. Why do you leave out so many comments by NVAC?

The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.

Are you prepared to agree with NVAC that the data are in and that there has been no epidemic of mercury caused autism? It would be the honest thing to do.

You rely heavily on the idea that mitochondrial disorders are related to autism. You pushed heavily on your blog the idea that mitochondrial disorders are caused by mercury, without substantiation. In fact, this idea is strongly rejected by the very experts you rely upon.

Further, you leave it implied that children with mitochondrial disorders and autism indicate a link to autism as a vaccine injury. This is clearly not the case.

Why do you leave out the fact that most children with mitochondrial disorders and autism do not show regression. Without regression, it is clear that vaccine injury is not causing autism in these individuals?

Why do you leave out the fact that in the one study of children with mitochondrial disorders and autism, it is clear that vaccines are not causal in the vast majority of cases, and could be questionable in the one case cited so far?

You cite that there could be a sizable population of autistics who have a mitochondrial dysfunction. Yet you leave out the public statements by one of the very doctors who supported the Hannah Poling case in vaccine court that any such injuries are rare. This from the few doctors who support the idea of mitochondrial disorder as a vaccine injury. Other specialists have stated that it is far to early to draw a conclusion that mitochondrial disorders caused by vaccination is even “rare”.

Why have you not removed your blog piece that was so erroneous that you were forced to rewrite it within a day, with an admission that you seriously erred? Isn’t that a form of dishonesty?

Are you prepared to join Rick Rollens, one of the strongest proponents of the vaccines-cause-autism notion, in stating that the idea that MMR causes autism has been tested and MMR is no longer suspect?

I will ask again, if you are going to cite NVAC, are you willing to join them and state that mercury did not cause an “epidemic” of autism?

Would you at least be willing to include quotes from NVAC that are, shall we say inconvenient, to the notion of a vaccine induced “epidemic” of autism? Quotes such as:

Vaccination almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations.

This quote makes it clear that
a) NVAC does not support the idea of an autism “epidemic” caused by vaccines
b) NVAC is not calling for studies of vaccines and autism due to evidence presented so far, but, instead, by public concern.

Mr. Kirby, your half truths and misleading arguments cause great harm to the autism communities, as well as to public health. You personally are responsible for much of the public’s misconception that mercury caused an “epidemic” of autism. Don’t you agree that you personally should publicly refute your previous stance?

Being wishy-washy on the epidemic question and letting your colleague Mark Blaxill push the idea in your tag-team briefings is just dishonest. Either you still believe in the mercury-caused-epidemic (and you are wrong) or you should be clear that it was a mistake.

It was a mistake. Earn some respect. Admit it.

New autism prevalence 1.5% in UK

31 May

A new study published (officially) tomorrow discusses ‘Prevalence of autism-spectrum conditions: UK school-based population study’.

Its an interesting study for quite a few reasons. Firstly, it offers a new autism prevalence of 1.5% (1 in 66). That’s the message that the press will no doubt focus on (and, as Kristina blogs, already have). And I’ve absolutely no doubt that our friends from JABS, Age of Autism and various other anti-vaccine fringe groups will be painting this as part of their ‘evidence’ that we’re in the throes of a massive autism ‘epidemic’.

However, the paper itself is very nuanced and is clear in its messages. However, to be absolutely sure I was correct in the conclusions I drew I had an email conversation with Professor Baron-Cohen before writing this entry.

Point 1: This study confirms the baseline rate of 1% as asserted by the Baird et al paper

Baird et al (2006) asserted that their findings would offer a baseline rate of autism prevalence, that prevalence being 1%. This figure was ascertained by looking at a SEN population of a South Thames cohort. Baron-Cohen et al (2009) confirmed that figure:

These authors took the decision to screen only the ‘at-risk’ population and assert that their estimate should be regarded as the minimum figure. Our results from screening the entire school-aged population support this assertion…

In other words Baron-Cohen et al also looked at the ‘at risk’ population and also found a prevalence of 1%.

Point 2: Baron-Cohen et al identify a further 0.5% to make a total prevalence of 1.5%

What is different about the Baron-Cohen paper is that as well as looking at the ‘at risk’ group they _also_ looked at mainstream schools. Using the CAST screening tool, this study identified a previously unknown prevalence of 0.5% within this mainstream environment.

Our results from screening the entire school-aged population…highlights the reality that there are children with autism- spectrum conditions, notably children with high-functioning autism, who remain undetected in primary schools. These children may use strategies to mask their social and communication difficulties such as going to the computer room at playtime. They may be quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties. Primary schools in the UK are typically small and foster a supportive and nurturing environment. It may not be until these children move to secondary school that their true differences are revealed.

Often I have heard people asking how it is possible that people with autism could possibly be missed. The Baron-Cohen et al paper gives a graphic answer to that question.

Point 3: Caution should be applied in assuming that results ascertained in Cambridgeshire could be applied across the rest of the country

The area is very affluent within the UK and has excellent autism resources for autistic children. It is a given that many families have moved into the area to try and exploit those services. This would have a positive effect on prevalence that is not consistent with the majority of the UK.

Our study does not report on migration of families but given the level of services for and awareness of autism-spectrum conditions in Cambridgeshire, this remains a distinct possibility. Caution should therefore be employed in assuming that the figures reported here can be applied nationwide.

Professor Baron-Cohen and I had the following exchange about the autism ‘epidemic’:

KL: What would you say to someone who says that your paper is strong evidence of an ‘autism epidemic’ (because you know they will)?

SBC: I think the term ‘epidemic’ of most value in relation to contagious diseases, which autism is not.

KL: Can I rephrase my question? Would you say your findings support the idea that there has been a true rise in prevalence? As oppose to the seven items you say have caused a seeming rise in autism earlier in your paper?

SBC: There has been a real rise in prevalence but what is at issue are the causes of this rise. In the paper we summarize the quite ordinary factors that might have driven the rise, such as better recognition, growth of services, and widening diagnostic criteria.

So next time someone who likes to bandy about the phrase ‘epidemic denier’ like he knows what he’s talking about when he claims that the ‘epidemic deniers’ say that autism is just better recognised these days, tell him there’s a lot more than just one reason:

Prevalence estimates for autism-spectrum conditions have shown a steady increase over the past four decades. In 1978, the consensus estimate for classic autism was 4 in 10 000; today autism-spectrum conditions (including classic autism) affect approximately 1% of the population. This massive increase is likely to reflect seven factors: improved recognition and detection; changes in study methodology; an increase in available diagnostic services; increased awareness among professionals and parents; growing acceptance that autism can coexist with a range of other conditions; and a widening of the diagnostic criteria.

Autism epidemic in Sri Lanka?

8 May

Well, that’s what you might read if/when some other blogs see this new study:Screening of 18-24-Month-Old Children for Autism in a Semi-Urban Community in Sri Lanka. Soon to come out in the Journal of Tropical Pediatrics.

Take a look at the abstract:

All children aged 18-24 months in a defined geographical area were initially screened for autism, using ‘Red Flag’ criteria. All the children with one or more positive ‘Red Flag’ signs were further screened using Modified Checklist for Autism in Toddlers (M-CHAT) translated to Sinhala, followed by a comprehensive clinical assessment. Of a sample of 374 children, ‘Red Flag’ signs were positive in 28 (7.4%). Four children received a diagnosis of autism on clinical assessment giving a prevalence of 1.07% or 1 per 93 in the 18-24-month age group. Sensitivity of M-CHAT was only 25%, and specificity 70%. The high prevalence detected strongly justifies early community-based screening, but a culturally sensitive screening tool needs to be developed for Sri Lanka.

Let me start by congratulating the researchers. We need a lot more information about autism around the world. So far, most of the data is from the US, Canada and Western Europe. We need to know more about autism in other countries, and, more importantly, they need to know more about what is happening in their own countries.

The idea that a “culturally sensitive screening tool needs to be developed” is one that I would like to see explored. The IACC Strategic Plan had initiatives which were directed at screening diverse populations.

I find it interesting that they worked with children so young (18-24 months old). It will be interesting to see how stable those diagnoses are over time as well as if they missed anyone.

The autism prevalence is about 1.07%. One reason I decided to blog this is because it fits with a prediction made by Joseph over 2 years ago in his blog post Moving Toward a New Consensus Prevalence of 1% or Higher.

We do, indeed, appear to be moving towards a consensus of about 1% (or somewhat higher) for autism prevalence. It’s quite interesting to see, and kudos to Joseph for pointing this out 2 years ago.

Generation Rescue: a dishonest autism charity?

6 May

Generation Rescue has a long history of promoting bad science. They even have tried their hand at it themselves before, with a phone survey that was so bad it would have earned a college freshman in epidemiology a failing grade.

So when they came out with their own “study” of vaccination rates around the world, you can imagine I didn’t expect it to be good. In fact, I just avoided it altogether until they sent me an email telling me how good it was.

So I looked.

It was worse than I expected. Far worse.

The “study” is here. Generation Rescue (GR) looks at the vaccine schedules for multiple countries and compares this with the infant mortality rate and autism rates in those countries.

I read it and, Oh…my…god… I expected bad science and poorly/biased interpretations. Instead, what I found was pretty clear evidence that Generation Rescue is knowingly distributing misleading information.

Before you get worried that this post is way long and question whether you really want to read the details, here’s the short version:

1) They compare infant mortality rates between the US and other countries–even though it is clear (according to their own expert no less!) that the US uses different criteria for infant mortality and it isn’t accurate to compare the US infant mortality to that in other countries.

2) They compare autism rates amongst countries to show the US has the highest rate, suggesting that the higher the number of vaccines the higher the autism rate. They just “forget” to tell you that the prevalences for the other countries are from old studies. We can debate why the reported autism prevalence is going up with time, but no one debates that the older studies report lower prevalences than we see now. So, why does Generation Rescue compare prevalence in the US using 2002 data for kids born in 1994 with, say, a Finnish study using 1997 data on kids born as early as 1979? I consider them very biased, but not incompetent enough to miss those fatal mistakes in their study.

3) They claim that the US has the highest vaccination rates and the highest autism rates. They conveniently ignore prevalence from Canada and the UK, which have comparable prevalences to the US and much much lower numbers of vaccines. Yes, you read that right, they left out the well known studies that would show that their conclusions are nonsense.

The worst part is that it is almost certain that Generation Rescue didn’t make an honest mistake. These are so obvious that whoever wrote that “study” had to know he/she was producing what amounts to the lowest form of junk pseudoscience.

For those who want the gory details, here they are:

Infant Mortality Rates

Generation Rescue points out that the reported infant mortality rate is highest in the United States, which also has the most childhood vaccines. All well and good, but can we really compare the infant mortality rates from country to country?

When I type infant mortality rate into a google search, the first hit is a Wikipedia page which, as it turns out, addresses exactly this question.The answer is a resounding “NO”, we can’t compare the US infant mortality rate with that of other countries.

While the United States reports every case of infant mortality, it has been suggested that some other developed countries do not. A 2006 article in U.S. News & World Report claims that “First, it’s shaky ground to compare U.S. infant mortality with reports from other countries. The United States counts all births as live if they show any sign of life, regardless of prematurity or size. This includes what many other countries report as stillbirths. In Austria and Germany, fetal weight must be at least 500 grams (1 pound) to count as a live birth; in other parts of Europe, such as Switzerland, the fetus must be at least 30 centimeters (12 inches) long. In Belgium and France, births at less than 26 weeks of pregnancy are registered as lifeless.

So, who wrote that 2006 article in US News & World Report?

Bernadine Healy.

Yep, the same Bernadine Healy that is Generation Rescue’s favorite “mainstream” doctor.

One has to believe that GR saw that article in Wikipedia and the US News article. They are, after all, Google Ph.D.’s. Given the author was Bernadine Healy, they have to have considered it accurate, don’t you think? And, yet, GR conveniently forgets to mention the differences in how the US and other countries count infant mortality in their vaccines cause autism “study”.

Autism Rates 1: Autism Prevalence by country

Start with the conclusion of the Generation Rescue “study”:

This study appears to lend credibility to the theory that the U.S. vaccine schedule is linked to the U.S. epidemic of autism, particularly when compared to the published autism rates of other countries.

Given this bold claim, it is critical that they use good data for the autism rates. By “good” I mean that they need data that they can accurately compare to the CDC reported prevalence of 1 in 150. That data was taken in 2002 on 8 year old children. I.e. kids born in 1994. Since reported prevalence numbers are going up with time, it would be very misleading if they were to use, say, prevalence numbers from the early 1990’s, wouldn’t it?

Any prevalence that they use would have to use prevalence numbers from about the same time, on kids of about the same age.

Here’s their table comparing the autism rates.

gr_table3

Let’s take a look at the studies they cited for their numbers, shall we?

Iceland: Prevalence of Autism in Iceland. This 2001 study uses kids from birth years 1984-1993. I.e. most (if not all) of the kids are from the time before the big upsurge in autism diagnoses. Hardly a good comparison to the 2002 CDC study, eh?

For Sweden, they use a paper called, “Is autism more common now than 10 years ago?” from The British Journal of Psychiatry. Published in… 1991. That’s pre DSM-IV. Amongst other problems, they won’t be including the other PDD’s in the autism spectrum, like the CDC study does. Besises, the kids from the CDC study weren’t even born yet, it was so old! Is there any wonder that the Swedish study shows a lower prevalence?

For Japan, they use a paper titled Cumulative incidence and prevalence of childhood autism in children in Japan. The study uses data from 1994 on kids who were born in 1988.

Are you starting to see the pattern here? Time after time, GR is comparing US 2002 prevalence data to much older data from other countries. Let’s go on:

For Norway, they use the paper Autism and related disorders: epidemiological findings in a Norwegian study using ICD-10 diagnostic criteria. The paper was published in 1998 on children 3-14 years of age. Simple math suggests they had kids with birth years going back to at least 1984 in that study. Hardly a good comparison to kids born in 1994.

For Finland, they use Autism in Northern Finland. Here is an updated version from 2005. The study uses data from 1996-97, on kids up to 18 years old. I.e. they are using kids that were born as early as 1979. Also, they are using data on patients from hospital records who used “communal health services”. Sounds a lot like “inpatient”–one of the critiques that GR uses against studies from Denmark. Also, the Finland study didn’t include Aspeger syndrome, as that was a new diagnosis at the time. Hardly a good comparison to the CDC study.

For France, they use Autism and associated medical disorders in a French epidemiological survey. This uses “French children born between 1976 and 1985”.

For Israel, they use Autism in the Haifa area–an epidemiological perspective. This paper looks only at autistic disorder (no PDD-NOS, no Aspergers, no Rett’s no Childhood Degerative Disorder). Right off the bat that reduces the prevalence and makes it impossible to compare the the CDC 2002 study. The Israell study also is, you guessed it, based on kids older than the CDC study: children born between 1989 and 1993.

Last, Denmark. If you’ve been following the thimerosal debate, you know this is going to be ironic. They use Madsen’s paper, Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data. Generation Rescue refers to this study (incorrectly, I might add) as “This one goes beyond useless”. I guess “useless” is only when it is used to refute the thimerosal hypothesis? Come on, GR, this level of hypocrisy is just painful.

Missing Studies

There are some very well known studies that Generation Rescue somehow forgot to include in their “study”. Could this be due to the fact that they are very good counterexamples to the vaccine-hypothesis ? Let’s look at some and see, shall we?

United Kingdom: Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence ( study performed in 2002 with a prevalence of 1 in 170), and Pervasive developmental disorders in preschool children (study performed in 1998/9 with a prevalence of 1 in 160).

Canada: Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations (birth years 1987 to 1998. Prevalence 1 in 154).

Wow, the United Kingdom and Canada have prevalence numbers comparable to those in the US!

So, let’s complete the comparison, shall we? What is the vaccine schedule like for the UK and Canada? Using the Generation Rescue “study” we get 20 vaccines for Canada and 21 for the UK.

Wow, that’s way less than the US (with 36), and they have the same autism prevalence as the US? How could that be? Is it, perhaps, that the autism is NOT related to the number of vaccines in a given country’s schedule?

Anyone doubt why GR left the UK and Canada off their table of Autism Prevalences Around the Globe? No, I am not giving them a pass that this could be an honest mistake.

To quote Generation Rescue’s top funny guy (Jim Carrey), “How stupid do you think we are?”

Thrown under the bus…but for a good cause, right?

21 Apr

America is a wonderful place. Where else can someone publish absolute garbage, refuse to retract it, accuse the government of being involved in a massive conspiracy–and still end up on a government committee?

I am speaking of Lyn Redwood. She is one of the coauthors on ‘Autism: a novel form of mercury poisoning’. This was ‘published’ in Medical Hypotheses. I put ‘published’ in quotes because Medical Hypotheses is a pay-to-publish pseudo-journal that has no review (peer or otherwise) at all. OK, the editor does check that the authors are talking about something medical, and makes sure that some sort of narrative is put together. But, scientifically? No review. Too many people, especially those parents with new autism diagnoses for their children, are unaware that “Medical Hypotheses” ‘papers’ have no place next to actual research papers.

If that piece of junk science wasn’t enough, Ms. Redwood was also a co-author on another less-than-worthless Medical Hypotheses ‘paper’, Thimerosal and autism? A plausible hypothesis that should not be dismissed. The first author on that “paper” was Mark Blaxill. Truly, one of the scary moments in the Omnibus proceeding came when the research head of ARI (Autism Research Institute) referred to Mark Blaxill as “brilliant”. No exaggeration–that was a frightening thought to this listener. Mr. Blaxill is probably rather bright and likely good at whatever he does professionally. But the idea that the information is traveling from him to the research head of the Autism Research Institute rather than the other way around is just scary.

The time to pay-to-publish retractions of these papers was years ago. Yet, both papers are still out there, and new parents usually won’t find out for a long time that those papers a junk.

Besides promoting bad science, what do Ms. Redwood and Mr. Blaxill have in common? Well, the Interagency Autism Coordinating Committee, for one thing.

Ms. Redwood sits on the Interagency Autism Coordinating Committee. This group helps coordinate the US Government’s research efforts on autism. Rather that fight for better understanding and services for, say, adults, the poor, or minorities with autism, Ms. Redwood filled meeting after meeting (after meeting) with struggles to get the wording of the Strategic Plan as close as possible to a government admission that vaccines cause autism.

Mark Blaxill sits on one of the working groups for the IACC, probably placed there by Ms. Redwood. Mr. Blaxill, also a co-author on a number of papers that any reasonable person would have retracted by now, has wasted considerable meeting time with long, insulting ramblings. I know there are people who appreciated Mr. Blaxill’s speeches, but I consider likening the other people on the committee to holocaust denialists insulting. Maybe I misinterpreted his repeated use of the phrase “Epidemic Denialists”. If so, I bet I’m not the only one. Somehow, I don’t think I’m wrong. It appears to be an insulting and deliberate choice of phrases.

Unfortunately for the undercounted communities like adults with autism, the poor with autism, minorities with autism–a number of our own–they present an “inconvenient truth” to people like Mark Blaxill and Lyn Redwood. They demonstrate that the numbers groups like SafeMinds use to promote the faux autism epidemic are terribly flawed. If we are still under counting people with autism in the U.S., how can we use the counts from the California Regional Centers or from education data so far as “evidence” of an “epidemic”?

I know I wrote about this issue recently. But, reading the expert report by Dr. Rodier, and writing about it, I realized anew that a few individuals have caused this harm. And, those few individuals could (and should) work hard to correct that harm.

So, in place of calling on the IACC to fund research that could help the under counted, Ms. Redwood and Mr. Blaxill got this paragraph:

Research on environmental risk factors is also underway. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system, or possibly due to mitochondrial disorder. Public comment to the Committee reflected opposing views on vaccines as a potential environmental cause. Those who are convinced by current data that vaccines do not play a causal role in autism argue against using a large proportion of limited autism research funding toward vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

Let’s just pull that last sentence out for emphasis, shall we?

A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

It’s odd to me–I would have fought that language if I were Lyn Redwood. I would have pointed out that I have a broader perspective than just vaccines, and that I also care about development of effective treatments, services and supports. Isn’t it just a little sad that the people who are pushing the vaccine connection don’t have the view that effective treatments, services and supports for those with ASD’s are a top priority?

But, it wasn’t their top priority. It still isn’t. In the end, Lyn Redwood and Mark Blaxill, people who are on the IACC to represent the interests of the entire stakeholder community, threw the underrepresented autistic communities under the bus.