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IACC Issues Statement Regarding Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder

7 Apr

The update of the DSM to the DSM-5 was met with a great deal of discussion by the autism communities. The U.S. Interagency Autism Coordinating Committee (IACC) has prepared a statement “IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder“. The statement can be found online and as a pdf.

The press release for the statement is below.

For Immediate Release
Wednesday, April 2, 2014

Contact: Office of Autism Research Coordination/NIH
E-mail: IACCPublicInquiries@mail.nih.gov
Phone: (301) 443-6040

IACC Issues Statement Regarding Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder (PDF – 115 KB)

Today, on World Autism Awareness Day 2014, the Interagency Autism Coordinating Committee (IACC) issued a statement regarding the scientific, practice, and policy implications of changes in the diagnostic criteria for Autism Spectrum Disorder (ASD) that were made in the most recent update of the Diagnostic and Statistical Manual of Mental Disorders (DSM). This link exits the Interagency Autism Coordinating Committee Web site

In 2013, DSM was revised for the release of its fifth edition, consolidating previous autism-related diagnoses together into a single “autism spectrum disorder” diagnosis defined by two groups of symptoms—social communication impairments and restricted, repetitive behaviors—while including intellectual and language disabilities as additional labels that can be added onto a primary ASD diagnosis.[1, 2] To address a variety of issues surrounding the implementation of the new criteria, the IACC assembled a planning group composed of IACC members and invited experts in the field to advise the IACC on this subject.[3] Based on the group’s findings, the IACC issued a statement, describing a range of scientific, practice, and policy implications that have arisen as a result of the changes in the DSM criteria, and providing recommendations for future research and implementation of the new criteria.

“The new criteria reflect advances in our understanding of ASD. At the same time, many in the community have raised questions about how the changes will affect people in the community,” stated Dr. Geraldine Dawson, who chaired the DSM-5 planning group. “In this report, we considered how the diagnostic changes might affect individuals and families, as well as the future of the field, and tried to anticipate needs that will arise in the research, clinical practice, and services arenas. We hope this report will help address some of the concerns that have been raised and provide valuable guidance to individuals, families and professionals.”

In the statement, the IACC acknowledged concerns about the potential for changes in the diagnostic criteria to impact access to services, urging that, “Any revision of the diagnostic criteria must be made with great care so as to not have the unintended consequence of reducing critical services aimed at improving the ability of persons with autism.” The Committee recommended research to further assess the reliability and validity of the DSM-5 ASD criteria, and to understand the potential impact of these new criteria on diagnosis, prevalence estimates, and access to services.

The IACC also identified several key practice and policy issues that will be important for the community to consider as DSM-5 is implemented in real-world settings, especially with respect to services. As the new criteria have not yet been rigorously tested in young children, adults and ethnically-diverse populations, the Committee cautioned clinicians to pay special attention to individuals with obvious ASD symptoms who narrowly missed being diagnosed with ASD according to the new criteria. In addition, the Committee strongly emphasized that, “Services should be based on need rather than diagnosis; it would not be appropriate for a child to be denied ASD-specific services because he or she does not meet full DSM-5 criteria if a qualified clinician or educator determines that the child could benefit from those services.”

With this statement and its list of recommendations for future research, practice and policy, the IACC endeavors to support implementation of DSM-5 with appropriate caution and rigor. Using these criteria to benefit people with ASD remains the primary goal, ensuring access to interventions, services and supports that will help people on the autism spectrum optimize their health and well-being, and meaningfully participate in all aspects of community life.

References

1 American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Health Disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

2 Diagnostic Criteria for ASD from the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)

3 Roster of the IACC DSM-5 Planning Group

DSM-5 Resources

Additional resources related to the DSM-5 and autism spectrum disorder can be found on the IACC website.

Note: I serve as a public member to the IACC but my statements here and elsewhere are my own.


By Matt Carey

Comment on “Potential Impact of DSM-5 Criteria on Autism Spectrum Disorder Prevalence Estimates”

25 Jan

One of the big topics of discussion in the past few years was the roll out of the DSM-5. The new criteria for what defines autism. One could find those saying “this is designed to undiagnose autistics with intellectual disability” as well as “this is designed to undiagnose autistics without intellectual disability” together with the multiple comments that “this is designed to obfuscate the “epidemic” of autism”.

A recent paper discusses this: Potential Impact of DSM-5 Criteria on Autism Spectrum Disorder Prevalence Estimates. The study looks at the CDC’s ADDM network–the same basis for the CDC autism prevalence estimates that come out every two years.

I haven’t read the full paper yet, but here’s the abstract:

IMPORTANCE The DSM-5 contains revised diagnostic criteria for autism spectrum disorder (ASD) from the DSM-IV-TR. Potential impacts of the new criteria on ASD prevalence are unclear.

OBJECTIVE To assess potential effects of the DSM-5 ASD criteria on ASD prevalence estimation by retrospectively applying the new criteria to population-based surveillance data collected for previous ASD prevalence estimation.

DESIGN, SETTING, AND PARTICIPANTS Cross-sectional, population-based ASD surveillance based on clinician review of coded behaviors documented in children’s medical and educational evaluations from 14 geographically defined areas in the United States participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network in 2006 and 2008. This study included 8-year-old children living in ADDM Network study areas in 2006 or 2008, including 644 883 children under surveillance, of whom 6577 met surveillance ASD case status based on the DSM-IV-TR.

MAIN OUTCOMES AND MEASURES Proportion of children meeting ADDM Network ASD criteria based on the DSM-IV-TR who also met DSM-5 criteria; overall prevalence of ASD using DSM-5 criteria.

RESULTS Among the 6577 children classified by the ADDM Network as having ASD based on the DSM-IV-TR, 5339 (81.2%) met DSM-5 ASD criteria. This percentage was similar for boys and girls but higher for those with than without intellectual disability (86.6% and 72.5%, respectively; P <.001). A total of 304 children met DSM-5 ASD criteria but not current ADDM Network ASD case status. Based on these findings, ASD prevalence per 1000 for 2008 would have been 10.0 (95% CI, 9.6-10.3) using DSM-5 criteria compared with the reported prevalence based on DSM-IV-TR criteria of 11.3 (95% CI, 11.0-11.7).

CONCLUSIONS AND RELEVANCE Autism spectrum disorder prevalence estimates will likely be lower under DSM-5 than under DSM-IV-TR diagnostic criteria, although this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria.

Based on this, about 20% of those who would receive an ASD diagnosis under DSM-IV will not get one under DSM-5. The decrease was seen in both autistics with and without intellectual disability–with a larger decrease for those without ID. At the same time, some kids who were not previously identified as autistic would be under DSM-5.


By Matt Carey

Mayer Eisenstein files for bankruptcy…again

22 Jan

Mayer Eisenstein is a go-to person in the vaccines-cause-autism community. He heads a large practice in the Chicago area and claims that his unvaccinated children do not have autism. He also was or is a part of the “Lupron Franchise”—a group of practitioners who took on the Geier idea that shutting down sex hormone production in autistics could be a treatment. It was a profoundly bad idea.

Mayer Eisenstein was the subject of an article in the Chicago Tribune: Autism doctor: Troubling record trails doctor treating autism. From that article:

Yet his suburban Chicago practice, currently known as Homefirst, garnered an alarming record: It was on the losing side of one of the largest U.S. jury verdicts — $30 million — ever awarded to the family of a newborn in a wrongful-death suit.

In court records dating back three decades, the families of dead and brain-damaged children repeatedly alleged that doctors who work for Eisenstein made harmful mistakes — sometimes the same error more than once. His practice also has been dogged by accusations in court records that its offshore malpractice policy was phony.

After the $30M verdict, Mayer Eisenstein filed bankruptcy. Which was not permitted. Again from the article above:

With bankruptcy off the table, a Cook County judge acknowledged the practice’s claim of insolvency, consolidated the $30 million verdict, five remaining malpractice cases and two civil fraud cases and ordered mediation.

Last July, the judge approved a $1.275 million settlement that Homefirst must divide among six families over seven years. Eisenstein’s practice made the first $100,000 payment last September, four months before he opened the autism clinic.

It appears that the $1.275M settlement noted above is the topic of a battle ongoing in the current bankruptcy filing by Dr. Eisenstein. Per the complaint:

The aggregate Settlement Amount of $1,275,000 represents a small fraction of the total of claims by the Personal Injury Plaintiffs, some of which had reached verdict and judgment.

In other words, it appears Mayer Eisenstein wasn’t allowed to avoid payment by filing bankruptcy, but he did reduce the payments dramatically. The settlement also included a payment schedule. The families claim that four annual payments for a total of $430,000 were made, then the payments stopped after 2011. They claimed (as of August 2013):

Installments to Be Paid on or Before: Amount

September 22, 2012 (not paid when due). . . . . . . . . . . . $ 140,000.00

September 22, 2013 (not yet due). . . . . . . . . . . . . . . . . . $ 150,000.00

September 22, 2014 (not yet due). . . . . . . . . . . . . . . . . . $ 160,000.00

September 22, 2015 (not yet due). . . . . . . . . . . . . . . . . . $ 395,000.00

Total due and unpaid and to become due $ 845,000.00

Per the docket, the case was scheduled to go to hearing last month.

In short, it appears that a multiple families were injured by Mayer Eisenstein and/or member of his practice. They sought and were granted damages, only to have Dr. Eisenstein negotiate those down in a 2004 bankruptcy filing. Dr. Eisenstein made some payments, but then stopped. And he now appears to be trying to avoid further payments as part of his new bankruptcy filing, which the families are fighting. Again.

Why, one might ask, didn’t the families get some secutity pledged to cover the settlement should Dr. Eisenstien stop payments? Seems a reasonable thing to do. The answer is they did. It appears that the property he pledged as security was not under Mayer Eisenstien’s control. In other words, when the families sought to get the property in lieu of the payments, they found that Dr. Eisenstein (who holds a law degree in addition to his medical credentials) couldn’t directly hand it over.

The records of the Office of the Recorder of Deeds of Cook County, Illinois disclose the following transactions for the property at 1101 Dodge, Evanston, Illinois, PIN 10-24-

208-032-0000:

(a) Karen Eisenstein (Mayer Eisenstein, M.D.’s spouse) took title by a deed recorded on April 29, 2002 as document number 0020384408.

(b) Karen Eisenstein transferred title to North Star Trust Co. Tr. # 36189 by a deed in trust recorded on June 11, 2003 as document number 0316239026.

25. Paragraph 6 of the Circuit Court order of July 12, 2008 further provides:

“6. Plaintiffs are to have secured creditor status in the event of an applicable bankruptcy filing.”

So, it would appear that Mayer Eisenstein pledged a property as security for the settlement—a property which he had transferred to his wife in 2002 and which she had transferred to a trust company, in 2003. In other words, to this layman, it appears that at the time he put the property up, it was effectively shielded from actually being used as security.

Another question that one would reasonably ask is why weren’t these claims paid by malpractice insurance? That gets very convoluted, but the original settlement agreement included the statment

“I. Defendants in this matter affirm that they do not have any liability insurance coverage for any of the claims of the remaining plaintiffs.”


Defendants would be Mayer Eisenstein and his practice. And here is where it gets convoluted. The current complaint states

45. At one of the meetings pursuant to Section 341 of the Bankruptcy Code, Mayer Eisenstein, M.D. stated that from time to time he has malpractice insurance to allow him to be on staff at an area hospital.

46. At that same meeting, Mayer Eisenstein, M.D. stated that he did not submit any of the claims to that malpractice insurance carrier, because, as he claimed, if he had the insurance would have been cancelled, and he could no longer use the hospital

47. If Mayer Eisenstein, M.D. had medical malpractice insurance coverage in place at a time when the claims or one or more of the Personal Injury Plaintiffs cases arose, then the
statement was false.

Maybe he didn’t have insurance. Maybe he did and didn’t submit the claims.

Let’s take a look back at the Chicago Tribune article. In addition to discussing the Lupron clinic Dr. Eisenstein set up, it also discusses his history with insurance:

He also dabbled in group health plan sales to Illinois families but tangled with state insurance regulators in the mid- to late 1990s. Regulators warned consumers in a newsletter that Eisenstein “continued to illegally market” the Homefirst Health Plan, based in the British Virgin Islands, even after they told him the plan was ineligible. Despite this, he continued selling the plan, records show, and they ordered him to “cease and desist.”

In an interview, Eisenstein said he was offering a “fraternal health plan,” not traditional health insurance, so he said he didn’t have to listen to regulators. He no longer sells health plans.

And, later:

After Nathan Howey’s death, Weiss Hospital sued Homefirst, Rosi and Eisenstein for fraud, alleging they misrepresented their Caribbean-based malpractice policy. Eisenstein testified that he was in St. Kitts helping one of his daughters, a veterinary student there, buy a condo when the lawyer who helped arrange the sale told Eisenstein he also sold malpractice insurance.
“I was tickled pink to get insurance,” he said under oath.

A Cook County judge called it an “improperly underwritten insurance plan.” Eisenstein, who says the policy is legitimate, agreed to pay Weiss $50,000 after mediation.

Yes, “tickled pink” to get insurance. From a Caribbean island real estate/insurance salesman.

For those interested, here are some of the documents from the case discussed above.

Case 13-01050, lawsuit

Exhibit A

Exhibit B


By Matt Carey

Embryo screening to reduce autism risk: it’s not in the future. It’s now

28 Dec

A news article on screening of embryos came out last week and it was picked up under various titles by various news outlets.

From Australia and New Zealand

Why IVF parents are choosing girls over boys, which google news also listed under Parents call for embryo screening to cut risks.

IVF parents choosing girls over boys

And a different take

Parents Worldwide Prefer Girls To Boys: Will India And China Learn?

From India

Why girls are preferred over boys by IVF parents

Here’s a quote from one of the stories:

Figures from one of Sydney’s top IVF clinics show about one in 20 parents seeking embryo screening are looking to have a female baby to reduce their risk of autism.

Australia does not allow for gender selection of embryos. One can’t tell the IVF team to pick male or female embryos. But one can ask for genetic screening.

University of Sydney senior lecturer in bioethics Chris Jordens said autism had a strong genetic basis, so it was within the guidelines.

And the trend towards genetic screening is strong and building in the US.

At a recent conference in Chicago, he saw a number of United States IVF providers offering parents without the conditions tests for between 180 and 600 common gene mutations, such as the BRCA ”breast cancer” genes.

Gender selection to reduce autism risk is about the most basic, the most crude, genetic screening one could imagine. But it’s real and it’s happening.

The concept of autism prevention through genetic screening, either in IVF or in selective abortions, has been a major ethical question with the push for genetics research in autism in the past decade.

The first step in guiding our societies towards an ethical approach to genetic testing is to present autism accurately. This is one reason why I and others speak out when groups such as Autism Speaks or some parent “advocates” present autism with phrases such as as “These families are not living” or “Life is lived…in despair”. Is life harder, more challenging for my kid? Absolutely. But what message are we sending to prospective parents when we tell them that their lives will be lived in despair or they will no longer be living if they have an autistic child? We are telling them to do whatever they can to avoid having an autistic child. We are telling them to pick and chose their embryos. We are telling them to selectively abort. We are telling the autistics of today that the perfect world (in the view of the majority) is one without them.

My kid and other autistics, children and adults, deserve life. They deserve the right to pursue happiness. Disabled does not equate to despair.

This is why, Autism Speaks, when you portray my kid as less, my life as not lived, I and others will speak out. Autism Speaks, it’s time you started listening.

By Matt Carey

Details about the potentially “recovered” autistic kids in the National Survey of Children’s Health

27 Dec

I recently wrote about data from the National Surevey of Children’s Health. In specific, I explored the question of just how many of those kids were identified as autistic at some time in the past and are currently not identified as autistic. Keep in mind the limitations of the NSCH, inlcuding (1) it’s a survey not a direct examination of kids, (2) similar to (1), this is all parent-reported data, (3) these are raw data, not corrected for any socio-economic factors.

I posed the question Are 20-30% of autistic children recovering? as this is how I’ve heard the results of the survey framed. Kid was once identified as possibly autistic/kid is not currently identified as autistic/therefore kid recovered from autism. While 17% of the kids in the survey “lost” their autism label, the parents report that most of these kids were never autistic to begin with.

In other words, the fraction of kids who might have recovered from autism is small. Much smaller than many people have been thinking after the 2007 NSCH data were released. Back then, David Kirby discussed the new prevalence numbers in his usual manner. For those who are not familiar with his “usual manner”, David Kirby was famous for “just asking questions” which lead the reader to believe that vaccines cause autism. He retains plausible deniability (I never said that vaccines cause autism, I just posed the question. Over and over. With cherry picked data to support the conclusion)

Back then Mr. Kirby wrote:

Among boys, for every 260-per-10,000 male children originally identified as having an ASD, 90 of them (34.6%) reportedly do not have the diagnosis now.

and

The percentage of girls who apparently lost their original label was 44.5%.

Followed later by:

Another item that will surely spark fiery debate is the reason why so many children previously indentified with ASD are currently not holding that diagnosis.

There are three main possible explanations:

1) Many children never had an ASD to begin with, and were simply “mislabled.”

2) Some children naturally “recovered” from ASD on their own without treatment, (though Lee Grossman and many others told me they have never seen this happen).

3) Interventions including behavioral therapy, dietary changes and biomedical treatments actually work, and it is possible to “recover” a child from the grips of ASD

Well, there’s never been a “fiery debate”. But he did implant the question in the minds of people and it has stuck. I’ve heard people claim a high “recovery” rate. We can now answer some of Mr. Kirby’s questions. We now know that, yes, many of these children never had an ASD to begin with. Some children went from having an autism label to not and the parents did not attribute the change to treatment. A small fraction (about 3%) of parents attribute the “loss” of the autism label to treatment, but we don’t know what treatments they credit. (Note how Mr. Kirby lumps dietary changes and biomed together with ABA, lending alternative medicine some credibility by association).

So, what about those kids whose parents reported some treatment(s) resulted in a change from actually autistic in the past to not autistic now. What can we say about those kids? Do they have any other challenges or diagnoses? What we can say is that a large fraction still have some diagnosis or parental concern.

Let’s go through some of the questions in the survey:

Recall that 2041 parents answered yes to Has a doctor or other health care provider ever told you that [S.C.] had Autism, Asperger’s Disorder, pervasive developmental disorder, or other autism spectrum disorder? (question K2Q35A)

Some of these kids were reported by parents to no longer have an autism label. And some of those parents attributed the change to treatment. How many one might ask? 69 answered yes to question K2Q3F_1: I am going to read a list of reasons why [S.C.] may no longer have autism or autism spectrum disorder. For each reason, please tell me if it applies to [S.C.]. Treatment helped the condition go away.

69/2041=3.4%.

So we are dealing with small numbers here, but there are more data to explore in the survey. In specific, parents were asked questions about diagnoses other than autism.

Here are a few examples of the conditions those 69 kids still have:

23 parents answered yes to “Does [S.C.] currently have speech or other language problems”. For reference, 23/69=33%

18 parents answered yes to “Does [S.C.] currently have a learning disability?”. 18/69 is 26%.

6 parents answered yes to “Does [S.C.] currently have intellectual disability or mental retardation?”

18 parents answered yes to “Does [S.C.] currently have ADD or ADHD?”

12 parents answered yes to “Does [S.C.] currently have anxiety problems?”

10 parents answered yes to “Does [S.C.] currently have behavioral or conduct problems?”

5 parents answered yes to “Does [S.C.] currently have epilepsy or seizure disorder?”

25 parents answered yes to “During the past 12 months, has [S.C.] received any treatment or counseling from a mental health professional?”

Note that parents can answer yes to more than one question, so the total adds up to more than 69.

Kids go from having an autism label to not having an autism label. The fraction seems small, but it’s there. But not having an autism label is not the same thing at all as not having any label or challenges.

I don’t write this to throw cold water on those excited by autism recovery. But I do think we need to quote numbers that are as accurate as we can. The National Survey of Children’s Health points to any autism recovery being a small fraction of the autistic population (3% or less) and, of those, other diagnoses, disabilities and challenges are often present.


By Matt Carey

Is SSRI use during pregnancy an autism risk factor?

23 Dec

A few recent studies have suggested that using SSRI’s during pregnancy might increase the risk of a child later being diagnosed autistic. SSRI’s are commonly used to treat depression.

Earlier this year a team from Bristol studied the question and concluded:

In utero exposure to both SSRIs and non-selective monoamine reuptake inhibitors (tricyclic antidepressants) was associated with an increased risk of autism spectrum disorders, particularly without intellectual disability. Whether this association is causal or reflects the risk of autism with severe depression during pregnancy requires further research. However, assuming causality, antidepressant use during pregnancy is unlikely to have contributed significantly towards the dramatic increase in observed prevalence of autism spectrum disorders as it explained less than 1% of cases.

In other words, mothers taking SSRI’s may have more autistic children (50% increased risk) but that could be due to the underlying condition (depression) rather than the SSRI use.

A previous study pointed to an exposure risk from SSRI’s:

Although the number of children exposed prenatally to selective serotonin reuptake inhibitors in this population was low, results suggest that exposure, especially during the first trimester, may modestly increase the risk of ASD. The potential risk associated with exposure must be balanced with the risk to the mother or fetus of untreated mental health disorders. Further studies are needed to replicate and extend these findings.

This past week another study was published: Use of selective serotonin reuptake inhibitors during pregnancy and risk of autism. This tells a slightly different story: no increased risk for SSRI use during pregnancy, but an increased risk for mothers who used SSRI’s before pregnancy but not during. That would be consistent with the group above who postulated “Whether this association is causal or reflects the risk of autism with severe depression during pregnancy requires further research. “

A good discussion of this work is found at the Simons Foundation SFARI website: Study challenges link between antidepressants, autism.

I’ve seen people state emphatically based on the earlier work that SSRI’s should be banned for pregnant women. The present study shows how problematic drawing such strong conclusions from these small studies can be. What if the risk is for women who stop SSRI use?

The authors of the present study note that more work is warranted. This is clearly the case as the studies to date are conflicting and use small populations.

Here is the abstract from the present study:

BACKGROUND
Studies have raised concern about an association between the use of selective serotonin reuptake inhibitors (SSRIs) during pregnancy and an increased risk of autism spectrum disorders in the offspring.
METHODS
We conducted a cohort study of all singleton live births in Denmark from 1996 through 2005 (626,875 births), with follow-up through 2009. Using Danish population registries, we linked information on maternal use of SSRIs before and during pregnancy, autism spectrum disorders diagnosed in the offspring, and a range of potential confounders. We used a survival analysis of the time to diagnosis in the offspring with Poisson regression to estimate rate ratios of autism spectrum disorders according to maternal use of SSRIs.
RESULTS
During 5,057,282 person-years of follow-up, we identified 3892 cases of autism spectrum disorder (incidence rate, 77.0 per 100,000 person-years). A total of 52 cases during 42,400 person-years of follow-up involved offspring of women who were exposed to SSRIs during their pregnancy (incidence rate, 122.6 per 100,000 person-years). As compared with no use of SSRIs both before and during pregnancy, use during pregnancy was not associated with a significantly increased risk of autism spectrum disorders (fully adjusted rate ratio, 1.20; 95% confidence interval [CI], 0.90 to 1.61). Among women who received SSRIs before pregnancy but not during pregnancy, the corresponding fully adjusted rate ratio was 1.46 (95% CI, 1.17 to 1.81).
CONCLUSIONS
We did not detect a significant association between maternal use of SSRIs during pregnancy and autism spectrum disorder in the offspring. On the basis of the upper boundary of the confidence interval, our study could not rule out a relative risk up to 1.61, and therefore the association warrants further study. (Funded by the Danish Health and Medicines Authority.)


By Matt Carey

Are 20-30% of autistic children recovering?

22 Dec

Some children are identified as autistic and later found to be non autistic. How much does this represent “recovery” from autism and how much does this represent something else? The question became very big after the 2007 National Survey of Children’s Health NSCH) results were published. The survey asked parents if they had ever been told by a health care provider that their child was autistic. (Note that this is different from confirming that a child actually had a diagnosis). They then asked if the child is still autistic and about 40% said, no, I was told my kid was autistic before but he/she is not autistic now.

This raised a lot of questions. Are these kids “recovering” from autism? Were they autistic to begin with? These and more questions just couldn’t be answered in by the data collected.

Consider the 2007 dataset.Here is a list of raw data from the 2007 NSCH. 1427 parents, or 1.56% of parents answered yes to “Has a doctor or other health care provider ever told you that [S.C.] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder? ” [S.C] is the code for the child being discussed (selected child or something to that effect). (as with all figures in this article, click to enlarge).

NSCH 2007 ever told

Again, 1427 parents who said that some medical professional had stated the child was autistic in the past. Of these 459 answered no to “Does [S.C.] currently have Autism or ASD?”

NSCH 2007 still autistic

What’s going on there? Again, are these kids recovering? It’s a question certainly worth looking in to. The researchers felt it needed more attention and in the 2011/12 survey, discussed below, the researchers did ask more questions about autism and this subgroup.

The 2011-12 NCSH was published this past year (March of 2013). Once again they asked autism-related questions. The prevalence estimate from this survey was about 2% (1 in 50). In all, 2.13% answered yes to “Has a doctor or other health care provider ever told you that [S.C.] had autism, Asperger’s disorder, pervasive developmental disorder, or other autism spectrum disorder? ” [S.C] is the code for the child being discussed (selected child or something to that effect).

NSCH ever told

They then asked, “Does [S.C.] currently have autism or autism spectrum disorder?” and 0.36% said no. I.e. out of the 2.13%, 1.7% said that, yes, they report that their child is autistic. After controlling for some factors, an estimated prevalence of 1 in 50 (2%) was reported.

NSCH still autistic

So, what about the 343 kids who were previously identified as autistic but who aren’t now. 343 kids are about 17% of all those ever identified as autistic. But in 2007, about 33% of parents answered “no” to “Does [S.C.] currently have autism or autism spectrum disorder?” I.e. the fraction of these potentially recovered kids went down by 1/2. In 4 years. If those kids are a measure of autism recovery, something dramatic is happening. As in, autism recovery rates are dropping fast.

Luckily we can test whether these kids do represent autism recovery. The authors of the NSCH added new questions to the 2011-12 survey. First they asked the obvious and important question “To the best of your knowledge, did [S.C.] ever have autism or autism spectrum disorder? ” 228 parents, 0.24% of the total population surveyed, said “no”. Only 97 said “yes”.

NSCH ever had.

That’s a lot of numbers, so let’s recap. In the 2011/12 survey:

95,677 parents were surveyed
2,041 answered that at some time they were told their child was autistic
343 of those said their child is not currently autistic
228 of those said that their child never was autistic.

Most of the kids who “lost” their autism label were never autistic to begin with.

Of the total kids in the “ever identified autistic” group, 97/2041 or about 5% said that they believed their child was autistic at one time in the past but was not in the present. Not 20%, not 30% as some have suggested. 5%. Still worth investigating, but not the high numbers I sometimes hear people quote.

The survey authors asked two follow up questions to the parents who reported that their child is not currently autistic but was in the past “Treatment helped the condition go away” and “The condition seemed to go away on its own”. For those looking for support that some therapy or combination of therapies is recovering kids: 69 parents out of 2043 reported that their kid lost the autism label and that treatment was the primary factor in the loss.

69/2043: we are talking about roughly 3%.

NSCH follow up

They also asked parents to comment on whether “The behaviors or symptoms changed” or “A doctor or health care provider changed the diagnosis”.

NSCH more questions

There are a few other questions on autism. For example, “With more information, the diagnosis was changed” (158 parents said yes). And “A doctor or health care provider changed the diagnosis” (46 parents said yes).

The last two autism questions are very important: “The diagnosis was given so that [S.C.] could receive needed services” and “You disagree with the doctor or other health provider about his or her opinion that [S.C.] had autism or autism spectrum disorder”. Out of the 343 children who “lost” their diagnoses, 102 (30%) parents say the diagnosis was given to obtain services. 122 (36%) of parents say they disagree with the original diagnosis.

The parents report that these kids were never autistic.

NSCH last autism questions

To summarize–Yes, a significant fraction of the children in this survey reported as once holding an autism label are not currently autistic. About 17%, to put a number on it. And, of that 17%, many have social factors involved in their “loss” of an autism diagnosis: incorrect diagnoses, the search for services, etc.. About 5% of autistic kids are reported by their parents as once really being autistic but not presently autistic. Are these kids a subgroup of actual recovery? It’s hard to tell.

One can drill down further into the data and get more insight about this group, but that will wait for another article.

The bottom line is simple, though. The National Survey of Children’s Health does not support the idea that 20-40% of autistic children are recovering. Maybe a few percent are, and with small numbers that will make studying this subgroup very difficult.


By Matt Carey

note: numerous edits were made for readability, but no substantial changes to the basic information was made.

Looking back at two decades of Geier

20 Oct

In the past Mark and (to a lesser extent) his son David Geier were frequently being discussed online. It struck me that given how far back the Geier saga goes, many may not be aware of the myriad stories of the Geiers. How often and from how many angles the news has come about just how bad the Geier legacy is. They’ve been involved in the vaccine court (and from the outset–1993–showing “intellectual dishonesty“), publishing questionable research and running a clinic whose special “therapy” is so clearly wrong.

I went back to an article I wrote in 2007 where a Special Master (the judge in the “vaccine court”) wrote that the Geiers’ work was of such poor quality that the court would no longer pay for them to act as experts. I was going to just re-run that article (and it is copied in full below) when I thought it worthwhile to list some of the more notable actions of the Geier team.

The best writing on the Geiers was done by Kathleen Seidel of Neurodiversity.com (some of the best investigative reporting ever). Unfortunately a server crash took down the site, but one can find the articles on the Wayback Machine (archive.org).

Just a few specific examples:

Maryland Authorities Charge “Lupron Protocol” Promoters With Unprofessional Conduct, Unlicensed Practice of Medicine ·

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol

A Silent Withdrawal (details behind the withdrawal of a Geier paper).

The withdrawal followed and was likely caused by Ms. Seidel’s investigations, laid out in this letter to the Journal (autoimmunity reviews) in which she noted (among other facts) that the Geiers actions were questionable from an ethics standpoint. In specific, in regard the their IRB (Institutional Review Board) approval for their study:

The Office of Human Research Protection registration of the IRB of the “Institute for Chronic Illnesses” was submitted by Mark Geier in February 2006 — fifteen months after the commencement of the research the Geiers describe in this article, which began in November 2004, the same month in which Dr. Geier testified in court that he had no prior experience in the diagnosis or treatment of autistic children. (13,14) The seven-member IRB consists of Mark and David Geier; Dr. Geier’s wife; two of Dr. Geier’s business associates; and two mothers of autistic children, one of whom has publicly acknowledged that her son is a patient/subject of Dr. Geier, and the other of whom is plaintiff in three pending vaccine-injury claims. The membership of the IRB gives rise to misgivings about the independence of ethical review of Dr. and Mr. Geiers’ research. Every member has discernible conflicts of interest, and none has any discernible expertise in endocrinology — expertise crucial to the competent oversight and conduct of research involving pharmaceutical manipulation of children’s hormones.

Yes, they got “approval” from themselves after they did the research. Just astonishingly bad. Completely circumventing the entire purpose of an IRB.

There’s so much more good work at Neurodiversity.com. But let me switch to articles here at Left Brain/Right Brain:

David Geier ordered to pay $10,000 for practicing medicine without a license

Is Mark Geier finished as an expert witness in the vaccine court? A quote from this vaccine court decision:

I will not likely be inclined to compensate attorneys in any future opinions for consultant work performed by Mark Geier after the publication date of this opinion.

Note that the question is whether to pay Mark Geier as a consultant. This was in 2011, after it was established that he was not an expert and would not be compensated for work as an expert. This didn’t stop attorneys tried to keep him on the payroll as a “consultant”.

How about the Geier theory behind using Lupron to shut down hormone production in autistic kids? It started as a way to enhance chelation. Chelation is without merit in autism treatment to begin with, but the Geiers took it a step further. One of their collaborators, and apparently the parent of one of the first kids to be subjected to the “Lupron Protocol” quoted David Geier as saying, “We figured something new out…..we think we can get rid of the mercury by lowering the testosterone”. The “science” behind the “Lupron Protocol” AutismOne throws their support behind the Geiers in Autism Science Digest is ridiculous. Even the Geiers shifted away from their original theory, leaving out the mercury angle: The Geier Story on Testosterone Shifts Again.

In their research, the Geiers cite Simon Baron-Cohen, whose has worked on the idea that exposure to testosterone in-utero could be a cause of autism. Baron-Cohen’s work had no scientific relevance to the Geier work. But, thankfully, Baron-Cohen was quoted in a news article about the Geiers:

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

“The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” he said.

Mark Geier lost his medical licenses. Yes, licenses plural. Lost in many states. He had franchised his Lupron work out. It took a cease and desist order issued to make him really stop practicing medicine.

Criticism of Mark Geier’s “expertise” was not limited to the “vaccine court”. In Boyd Haley and Mark Geier: Experts? we see how he failed to meet the standards of an expert in a civil court.

The Geiers’ have done well, financially. Charging over $50k/year, plus over $10k in tests, could do that. Here’s their home in Florida (The Geiers’ Second Home)

As part of the action to strip Mark Geier of his medical license: Maryland Board of Phyicians: Mark Geier “endangers autistic children and exploits their parents”

In Crist backer Gary Kompothecras bullies Florida health officials, we learned that political pressure was being brought to bear to give the Geiers access to Florida’s health records to perform a study.

The Geiers requested over $100,000 for work on the Hepatitis B Omnibus, including multiple trips to Europe. (almost $24k for one trip alone). Much of the request had no documentation (bills, airline tickets, etc.)

Quotes from the special master in the decision in that case:

I found that the articles authored by Dr. Geier unpersuasive and not scientifically sound, based on my prior reading of the articles and critiques of them. I am also aware that Dr. Geier is trained as a geneticist and obstetrician, not an immunologist, epidemiologist, or rheumatologist, and that my fellow special masters and several other judges have opined unfavorably on his qualifications and testimony as an expert.

and, in regards to David Geier (who holds no advanced degrees):

“In summary, the undersigned finds the costs for David Geier’s efforts to be obviously unreasonable as Mr. Geier is not qualified to address the medical issues involved in the Program and his work was duplicative of the efforts by Dr. Geier. Thus, the undersigned denies the request for costs for David Geier in its entirety.”

The egregious billing activities of the Geiers amount to treating the vaccine program as their personal piggy bank, in my opinion.

In the courts, in their research and in their clinics, the Geiers have time and again shown behavior which is just reprehensible.

Below is the article I wrote in 2007 which prompted this summary: For your own good, don’t use that study!.

____________________________________________

I just read something interesting on the web.  Someone was telling a petitioner in a Vaccine Court trial that she would have a better chance of winning if her expert witness didn’t use a research report by the Geiers.

Was this a blog?  Was this a yahoo group?  Nope, this was a decision on the Vaccine Court’s website.  This was the opinion of Special Master Vowell.

If that name sounds familiar, it’s because she is one of the three Special Masters working on the Autism Omnibus Proceedings.  What exactly did she say?

“I suggested that, in view of the criticisms leveled at Dr. Geier and his research, petitioner would be better served if her expert could opine favorably at the hearing without relying on the cited articles. “

and

“In attempting to assist this petitioner in presenting the strongest possible case for vaccine causation of her illness, I urged her counsel to caution her expert against relying on the Geier articles he cited.”

Ouch.

In case you were wondering, I wasn’t just reading the Vaccine Court decisions for fun.   I was prompted by something that Mark Geier said on NightLine.  Dr. Geier made a comment about “Wining” in vaccine court.

This struck me as a very odd statement.  Petitioners (plaintiffs) win.  Lawyers win.  Expert witnesses?  They can help someone win, but I don’t see them as “winning”.  Besides, there was something in the way he said it.  Something like when a kid says, “of course I did my homework” and you know you have to go check.  So, check I did.

I looked through the published and unpublished decisions and searched for “Geier” in each.  These go back to 1997 for published decisions.   “Decisions” include actual cases as well as pre- and post-trial actions.  The one quoted above is a good example of “pretrial”.  Post-trial Decisions are often about whether everyone should get paid what they billed.  Or, at least, this seems to be the case in more recent times.

Not all Decisions are trials.  Keep in mind, a single trial could have multiple Decisions.  I haven’t tried to group them together by case, I just made a list of all of the ones I could find involving Dr. Mark Geier.

With all that out of the way, what did I find?  There are 31 Decisions posted that involve Dr. Geier.  Of those, three are cases “won” where Dr. Geier was involved.  A further 3 may be considered “mixed” or “neutral”.  Figure that in 80% of the cases, the Petitioner and/or Dr. Geier loses.  I consider that a generous take.  It really is more like 90%.

Let’s look at those “winners”.

1999: The petitioner won the case.  “The court’s decision in this case is not based on Dr. Geier’s testimony, but neither will the court discard his testimony as unreliable.”  Not the most ringing endorsement.

2000: The petitioner won the case.  Dr. Geier submitted an affadavit which was used to “buttress” the case made by the expert witness who actually testified.

2006: Discussion of fees where Dr. Geier’s fees and use is found to be reasonable. ” In the instant case, $1562.50 in expert witness fees for Dr. Mark Geier’s services is reasonable.”

Yes, in the last 10 years, those are the “good ones”.   Not impressive.

I have seen people post that somehow the Special Masters are trying to discredit Dr. Geier because he is so effective.  People seem to imply that his recent stances on mercury and autism caused the Government to try to neutralize Dr. Geier. 

With that in mind I looked to see if the tone of the rejections has changed with time.  I didn’t really see that.  Keep in mind that some of the well known comments about Dr. Geier predate all these decisions.  For example, he was called “intellectually dishonest” way back in 1993!

Here is a sampling of quotes from other decisions through the past 10 years:

1997: Dr. Geier’s opinion, which is in an area outside his expertise, was not persuasive to the court.

1998: The court is unpersuaded by the opinions of Drs. Kinsbourne and Geier.

1999: This conclusion itself effectively renders the rest of Dr. Geier’s theory useless to petitioner in this case.

2002: “First of all, Dr. Geier is wholly unqualified to testify concerning the two major issues in this case”

2003: “Intellectual rigor is missing from Dr. Tornatore’s testimony and the stealth witness Dr. Geier’s submission after trial. “

2004: “He is however a professional witness in areas for which he has no training, expertise, and experience”

2005: “The Special Master also noted that Dr. Geier’s opinions have been increasingly criticized in other vaccine cases. See Decision at 5. The Special Master identified seven cases in which Special Masters had rejected the expert opinion offered by Dr. Geier because the opinion related to areas outside Dr. Geier’s areas of education, training and experience.”

2006: This was a question of charges.  Dr. Geier charged $29,350.  In the end, they found $8,520 was reasonable.  It was  found that he was (1) not qualified as an expert, (2) charging for work on his own publications and (3) charging for time spent working in a related civil case.

“Since Dr. Geier did not possess the necessary expertise to testify in this case, the Court will reduce his hourly rate from $250.00/hour to $200.00/hour. Petitioner will not be compensated for costs that can be directly attributed to Dr. Geier’s original publications, attorney/lawyer consultations, and physician consultations. Additionally, the work billed for petitioner’s civil cases is not compensable.”

2007: Again Dr. Geier’s payment is cut. 

“For the reasons stated above, the undersigned finds 13.5 hours to be excessive. Dr. Geier  will be compensated for only those hours that are reasonable. Based on the undersigned’s experience with the Vaccine Program, Dr. Geier will be awarded compensation for five hours of  his time which is a reasonable, indeed generous, number of hours for a literature search and review of articles. “

Again, that is just a sampling,  No attempt was made to be random.  The tone has been increasing against Dr. Geier, though.  As noted in 2005, “The Special Master also noted that Dr. Geier’s opinions have been increasingly criticized in other vaccine cases”.  So it is increasing.  But that is only increasing by going from Bad to Worse. 

You are welcome to go through the decisions and see if I have been quote mining.  One thing you will see is the possible reason why the Special Master has started warning petitioners to avoid Dr. Geier’s studies.  There are statements to the effect of, “If I had known Dr. Geier was useless as an expert witness, I would have hired someone else”.

Sounds like good advice. 

Mark Blaxill on the Geiers: they do sloppy work

13 Oct

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


By Matt Carey

No, the thimerosal in the flu vaccine does not explain why autism rates did not go down

6 Oct

Surprisingly enough, there are still people promoting the idea that the rise in autism diagnoses observed over the last decades was caused by thimerosal in vaccines. The original argument was this–vaccines were added to the vaccine schedule in the 1990′s and with them the infant exposure to thimerosal increased. Concurrent with this rise in infant thimerosal exposure was a rise in autism diagnoses. Add to this a poorly concocted argument that autism resembles mercury intoxication and you have the basis for the mercury hypothesis.

Thimerosal was phased out of infant vaccines over 10 years ago. Thus, if the thimerosal hypothesis were true, reported autism rates should be declining by now. As far back as 2005 David Kirby (whose book “Evidence of Harm” played a major role in promoting the mercury hypothesis) acknowledged this point in a statement

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

It’s 2013. Autism rates in California have not declined. Not in Special Education. Not in the CDDS roles. And, yes, we are six years past the 2007 deadline that David Kirby gave us.

To be specific, let’s use the same method that David Kirby and others used to claim a thimerosal induced autism epidemic in the 1990′s (namely the California DDS client count–which not a good method, by the way). Autism “rates” have gone up by over 150% since thimerosal was phased out of infant vaccines. The age 3-5 bracket had about 4000 children in 2003 and is currently over 10,000.

CDDS 3-5

So we have more kids in California receiving services under the autism label than when thimerosal was in vaccines.

This is but one in a huge list of reasons why the thimerosal hypothesis doesn’t work.

But let’s go back in time a bit. Not so long ago one would hear proposals that we go back to the vaccine schedule of the early 1980′s when, it is claimed, the autism rate was 1 in 10,000. Fewer vaccines, less thimerosal, less autism. So goes the logic.

Generation Rescue, in fact, used to recommend the 1983 schedule as one of their alternative schedules

Turn back the clock
Comment: This is the schedule from 1983. If it worked for kids then, why doesn’t it work for kids now?”

Does it make sense to go back to the 1983 schedule? No. Why? OK a lot of reasons, but let’s focus on the fact that infants were exposed to more thimerosal in the 1980′s than today. Infant vaccines have no or only trace amounts of thimerosal.  So if thimerosal were the (or even a single) primary cause of autism risk, we would see autism rates lower today. To not only 1990′s levels, but to something like 1980′s reported levels. Assuming that the reported rates in the 1980′s were an accurate count of how many autistics there were then (a bad assumption but it’s the one they use).

To recap–Infant thimerosal exposure from vaccines peaked at nearly 200 micrograms in the 1990′s, up from about 100 micrograms in the 1980′s and is now less than 10 micrograms. And autism rates have not declined at all. Much less to 1980′s levels.

Once anyone says this the instant answer is that there is still thimerosal in some influenza vaccines. This, they say, is why autism rates have not declined. (note that thimerosal containing vaccines, including influenza vaccines, are banned in California for infants and pregnant women…and autism “rates” have continued to climb here).  

For completeness sake, let’s consider a kid who gets the maximum exposure to thimerosal from vaccines. I.e. a non California kid.  A kid who turns 6 months (the earliest age they will give a flu vaccine to a kid) during the flu season.  That kid will get 2 vaccines in the first year (6 and 7 months) then another influenza vaccine each year thereafter. Each with 25 micrograms of mercury from thimerosal. How does the thimerosal exposure compare to the 1983 schedule?  Take a look for yourself (exposures in micrograms of mercury from thimerosal):

1983 schedule 2013 schedule
DPT Inluenza
2 months 25
4 months 25
6 months 25 25
7 months 25
Total by 1 year 75 50
18 months 25 25
Total by 2 years 100 75
30 Months 25
Total by 3 years 100 100

So by age 3, the exposures are the same.  Except that the kid of today gets the thimerosal later and more spread out over time.  As an aside–most people who talk about the rise in thimerosal exposure during the 1990′s neglect to point out that the cumulative exposure in the 1980′s was already 100 micrograms. I.e. the “safe” level was significant.

If thimerosal were the driving force behind the rise in autism diagnoses, we should be back to 1983 levels, misrepresented by those claiming an epidemic as 1 in 10,000.  Instead we are at 1-2%.  The “rates” didn’t go down.

By this point the proponents of thimerosal are basically screaming, “you are forgetting the vaccines recommended to pregnant women!” No, I just put that off until now.  Sure, the influenza vaccine is recommended for pregnant women, but as the CDC notes:

Prior to 2009, influenza vaccination levels among pregnant women were generally low (~15%) (5,9).

So, from about 2000 to 2009 there wasn’t a big increase (or even a large part of the population) getting influenza vaccines while pregnant, nor were their children getting exposures higher than those in the 1983 schedule.

Take a look at that graph for California administrative autism prevalence again. Between 2002 (after the drawdown of thimerosal in vaccines) and 2012 the autism count doubled. Thimerosal exposure was down. A lot. Below 1990′s “epidemic” levels. Back to the 1983 “worked for kids then” levels. But autism “rates” continue to climb.

The people still pushing the idea that thimerosal is a (or even the) primary cause of autism are not unintelligent. We are talking about college educated people. Ivy league schools. A former journalist, an intellectual property expert and more. There is no math above. It’s all quite simple and straightforward. It uses the exact same logic and methodology they used to promote the idea that mercury causes autism. This is where intellectual honesty and basic integrity should kick in and get people to suck it up, admit their mistakes and start repairing the harm they have caused.

I’m not holding my breath.

By Matt Carey

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