CDC Whistleblower and Probability of Post-MMR Autism Diagnosis
We are simulposting this with Thinking Moms' Revolution and VaxTruth.
By Marcella Piper-Terry
If you haven’t heard by now about the biggest news to hit the autism community in a long time, here’s what’s been happening:
- Dr. Brian Hooker reanalyzed the CDC’s data and found a statistically-significant increase in the risk of autism for children who received the MMR vaccine before 36 months of age. [1]
- The increased risk was strongest for African-American males, who were 3.4 TIMES more likely to develop autism when vaccinated with MMR prior to 36 months, compared to matched controls. [1]
- There was an increased risk of autism seen across the board for children who received the MMR vaccine prior to 36 months of age. [1]
- Dr. Hooker was alerted to this problem by one of the CDC scientists involved in a 2004 study which declared there was no risk of autism based on MMR vaccination prior to 36 months of age. The CDC scientist in question (Dr. William Thompson) is listed as one of the authors on the 2004 paper. Dr. Thompson is now referred to as “the CDC whistleblower.” Dr. Thompson revealed to Dr. Hooker that the CDC researchers knew as early as 2001 about the greatly increased risk to African-American male children and they intentionally covered it up. [2]
- The CDC has released a statement in which they do not deny the increased risk of autism for African-American males vaccinated with the first MMR prior to 36 months of age. [3]
- In the CDC’s statement, they basically blame parents of children who develop autism from vaccines because the parents have followed the CDC’s Recommended Childhood Schedule, which includes receipt of the first MMR vaccine between 12-15 months of age. [4]
Dr. Hooker’s analysis of the data revealed a Relative Risk (RR) of 3.36 for African-American Males. The level of Relative Risk was statistically-significant at p=0.0019, which means the probability of Dr. Hooker’s findings being by chance was approximately 1 in 1,000.
In research, “p” means probability. When something is “statistically significant” it means a certain level of probability has been demonstrated when the data is analyzed. A p-value of .05 is necessary to consider whether the results are meaningful, or “statistically significant.” A probability of .05 means that you have achieved a 95% assurance that what you are seeing is real and not by chance. A 1 in 1,000 level translates to 999% assurance that what you’re seeing is real and not by chance.
The reanalysis of the data is important because in 2004, a group of researchers from the CDC published a study using the same data, and in their paper, they claimed there was no statistical significance between children with autism and controls (children without autism) based on the timing of the administration of the MMR vaccine. This was a lie. (I know. You’re shocked.)
When it comes to lies about vaccines and autism, the CDC is very good at what they do. Lying liars that lie. As Dr. Hooker stated so eloquently in his interview with Teri Arranga on VoiceAmerica, “They lied before. Now they’re lying about lying. Where else have they lied?” [5]
And therein lies (pun intended) the real scope of this issue. Where else have they lied and just how big are the implications of those lies?
How big is this problem?
The 2004 study in question has been cited in 91 additional studies currently listed among the peer-reviewed medical literature on PubMed. Many of the studies in the peer-reviewed literature concerning vaccines, vaccine-safety, and the relationship of vaccines and the autism epidemic have been authored by the same researchers involved in the fraudulent 2004 study. The scope of this is enormous. It’s not just one study – this brings into question the validity or the entire body of research. That body of research is what families, medical professionals and policy-makers rely on when making decisions on the health of individual children, recommendations for vaccine policy, things like what vaccines get added to the childhood schedule, and what vaccines are going to be “mandated” for school attendance. That body of research also influences the decisions made for children across the globe. This is not just about one study, and it’s not just about African-American children in Atlanta.
There are a lot of things to discuss about Dr. Hooker’s findings. The first thing is that his findings are not different from the findings of the CDC scientists. That’s right. No difference. The CDC researchers ALSO found that “Children with autism were more likely to be vaccinated before 36 months of age compared to matched controls.” This information was related to the Institute of Medicine (IOM) in 2004, by Dr. Frank DeStefano, in his presentation about the results of the study. [6] (See slides 35 and 39 of the presentation.)
Is that confusing to you? It is to me. The principal author of the DeStefano et al. 2004 study told the IOM that children who received MMR vaccine prior to 36 months of age were more likely to receive an autism diagnosis than were their peers who did not receive the MMR vaccine prior to 36 months of age. Yet… when the final paper that reported the findings of their research was published in the journal Pediatrics, they left out that little tidbit of information.
So now you are up-to-date on what’s been happening.
Let’s go on…
With all of the coverage of this important revelation over the last several days, it is daunting for me to figure out what I can contribute that hasn’t already been covered elsewhere. Some who know me have made the observation that I tend to be pretty good with research and with making things make sense for those who are not so well versed in statistics and experimental design. I am a nerd. I like numbers. I also have an insatiable curiosity about why certain things happen the way they do, and that fuels my need to pick things apart. Having said that, I am not perfect and like most people, I make mistakes.
Since this story broke, it has been stated many times (including by me) that the data indicates a 340% increase in the risk of autism for African American males. 340% is a huge increase. So is 236%, which is actually what we should have been saying. The numbers reported by Dr. Hooker were for Relative Risk. Basically, because the control population has a relative risk of 1.0, the percent increase in risk for the case group is obtained by taking the Relative Risk for the case group (3.36) and subtracting the Relative Risk of the control group (1.0); in this instance, the percent increase for African-American males is 3.36-1.0, or 2.36, which translates to a 236 percent increased risk.
Confused yet? Take a deep breath. It gets better.
So… here it is. I’m sorry. We made a mistake. See, CDC… it’s really not that hard to admit when you’ve made a mistake. Thankfully, this error did not go unaddressed for more than 10 years, and thankfully, no children were harmed as a result of our math mistake.
When I realized we had been using the wrong percent increase, I felt a bit ill. My thoughts went to something along the lines of, “Oh crap. We are going to look like a bunch of no-nothing alarmist parents and this is going to be used against us to say we don’t know what we’re talking about.” Well… Why would that scare us? It certainly wouldn’t be anything new.
As I thought more about this, it occurred to me that there are reasons why we would be so eager to believe the number was 340% - or even much higher. Those of us who have experienced vaccine-injury first-hand have lived a million percent increase in what we were led to expect would happen. We were told, “Vaccines are safe. There is no risk of autism from the MMR or any other vaccine.”
As parents who were lied to, and who have watched our children’s health be destroyed by vaccines we were told were “safe,” we certainly may have finely-tuned radars when it comes to detecting malicious intent from the CDC.
Many of us have been researching vaccines for a LONG time. We have read the science and we know this is not an isolated event. Many of us are also living the consequences of the lies that have been perpetuated. As TMR’s Zorro discussed in her blogpost earlier this week, the institutional gas-lighting and denial of our own observations and reports of our children’s regression and chronic health problems by those who are supposed to protect our children’s health re-traumatizes us on a regular basis. [7]
This is PTSD. It's trauma. It's the denial of what has happened to ALL of our children, which makes us have absolutely NO problem in seeing the increased danger to other people's children. This is what happens when researchers refuse to report the truth. If the truth of the damage is less than what we believe it to be, we are more likely to be able to accept that, if they would only acknowledge that there IS ANY AMOUNT of damage being done to our children.
Let’s not lose sight of what really matters!
A 236% increase is still highly significant (p=0.0019!!!), and none of this changes the fact that the CDC cooked the data and buried the truth. Just as they have done repeatedly in the past, and just as they will continue to do if there is no Official Congressional Inquiry and if those responsible are not held accountable. We want the truth. Our children deserve at least that much.
So, now that the highlights have been covered, and now that the fessing-up is over with, what’s left is to discuss what the numbers really mean, in terms of real children.
How many children are we talking about?
What does a 236% increased risk of autism mean for the population of African-American children? According to the website, stats.org, “A small increase in risk in a large population can result in many deaths” - or in this case, many more cases of autism. [8]
But, we aren’t talking about a small increase. We’re taking about a 236% increase for African-American males. Again… what does that mean? To figure that out, we need some (more!) statistics. The most recent stats we have on the rate of autism among American children comes from the CDC’s ADDM data. [9]
I know. I can hear the groaning. Let’s start with those numbers and break them down.
The 2014 ADDM report contains information for children who were 8 years old in 2010. The data was gathered from 11 sites in the U.S. I have written before about why the data is problematic, so I won’t go into too much detail about that here. In a nutshell, the 1 in 68 number is a vast underestimate for the following reasons:
- By the time the 1 in 68 number was announced, the children in question were 12 years old;
- The 11 sites from which the data was gathered only included one state (New Jersey) of the top ten states with the highest autism rates, according to IDEA (educational) data;
According to the CDC’s report, the 2014 ADDM data reveals a 13% yearly increase in the rate of autism, and this yearly increase has been consistent for the last several years. So… when we extrapolate the data down to children who are currently 3 years of age, a more accurate estimate of the autism rate in America (2014) is 1 in 21 three year-olds, and 1 in 18 two year-olds. Anyone who has been in a preschool class recently shouldn’t have any problem believing that.
Anyway… if we use the CDC’s old, under-reported number of 1 in 68 for the entire U.S. population, that translates to a rate of 14.7 children with autism per 1,000, or 1,470 cases of autism per 100,000 American children.
The next thing we have to do is figure out how many African-American male children there are in the United States. The total number of children (birth to age 18 years) in the U.S. in 2013 was 73,585,872. African-American children comprise 14% of the total population of American children. It should be noted that the 14% number only includes those whose parents identify them as “Black Only,” so the 14% number doesn’t include children of mixed racial heritage. Okay. So, the official number of “Black Only” children in the U.S. (2013) was 10,179,544. [10]
The ratio of black male children to black female children in the U.S. has been fairly consistent since the 1980s, and stands at around 1.03 to 1.0, meaning that for every 1,000 female black children born, there are 1,030 black male children born. [11]
My head is spinning at this point, so for the sake of my own remaining sanity, I’m going to simplify things and say that half of the total of black children born are boys.
- Total of African-American male children in the United States divided by 2:
10,179,544/2 = 5,089,772 (African-American male children under the age of 18)
Hang-in there. We’re in the home stretch…
Okay. So, if autism affects 1,470 of every 100,000 children, then a 236% increase (relative risk of 3.36) in autism results in 3,469 additional cases per 100,000 African-American male children. That’s ADDITIONAL cases, so we have to add 1,470+3,469 and we get 4,939 cases of autism per 100,000 African-American male children.
With the total population of African-American male children at approximately 5 million, the total number of African-American male children with autism as a result of increased risk from timely MMR vaccination is estimated at… 4,939 x 50 = 246,950 children. (100,000 x 50 = 5,000,000)
250,000 lives. 250,000 families.
At LEAST 250,000 African-American male children could have been spared if the CDC scientists had told the truth when the increased risk was first known to them in 2001. Please remember that this is the number of African-American male children who are CURRENTLY under the age of 18, and does not include any of the children who were over the age of five in 2001. Those victims of the CDC’s deception are no longer considered children so they are not included in the 250,000 number.
Is this a racial issue? No doubt. Is it JUST a racial issue? No way.
What we know at this point is that the CDC buried the knowledge of a significant increase in the risk of developing autism for African-American male children who received the MMR vaccine according to the CDC’s Recommended Childhood Vaccination Schedule. That one lie is responsible for at least 250,000 cases of autism in African-American male children. And that number is a vast underestimate of the true extent of the damage.
What are the real numbers? My brain can’t handle that today. My heart can’t either.
African-American males are not just more likely to be diagnosed with autism as a result of the MMR vaccine. As those of us with our own vaccine-injured children know, there is an entire continuum of neurological and immune-system damage that can result from vaccines. While preparing this article, I did a little research on other issues facing African-American male children and the picture is not pretty. As one recent article reports, African-American children are far less likely to finish high school, far more likely to be suspended from school, and more likely to suffer language-based learning disabilities than their non-black peers. [12]
Are these other learning and behavioral difficulties among African-American male children also related to vaccine-injury? It certainly seems likely. Of course, these are questions that could have been pursued 13 years ago if the CDC hadn’t buried the information. As a result of the CDC’s lies and fraud, we have no way of knowing how much vaccine-injury factors into these (or other) issues that plague our country’s young black males. It is certainly time to change that, and research investigating these issues should be funded and undertaken immediately.
Scientists whose salaries are funded with taxpayer money, and whose research is relied upon for decisions affecting the health of children should be held to the highest standard of accountability.
The goal of scientific research is not to shut down inquiry. The goal of scientific research is to further inquiry. The shutting down of scientific inquiry by the CDC and other aspects of the government is not unique to the 2004 paper and it is not unique to the MMR vaccine-autism link.
Covering up the evidence of a group of children who were at greatly increased risk of significant harm from the MMR not only denied African-American families the right to make informed decisions about their children’s health care, it denied the scientific community the opportunity to design and carry out follow-up studies to find out WHY those children are at increased risk. The answers to those questions could have helped to uncover other groups of children in other areas of the country who may have similar risk factors, including factors that may not be specific to African-American males.
The fraudulent 2004 study identified one particular susceptibility group. If follow-up studies had been done, it is very possible that other susceptibility groups may have been identified.
Bingo. That’s why they covered it up.
Does anyone remember Dr. Bernadine Healy? The former head of the National Institutes of Health? Yeah. That Bernadine Healy.
In a 2008 interview with Sharyl Attkisson, Dr. Healy stated:
This is the time when we do have the opportunity to understand whether or not there are susceptible children, perhaps genetically, perhaps they have a metabolic issue, mitochondrial disorder, immunological issue that makes them more susceptible to vaccines, plural, or to one particular vaccine, or to one component of vaccines, like mercury. So we now, in these times have to take another look at that hypothesis; not deny it. I think we have the tools today that we didn’t have 10 years ago. That we didn’t have 20 years ago…to try and tease that out and find out if there is indeed that susceptible group. Why is that important? A susceptible group does not mean that vaccines aren’t good. What a susceptible group will tell us is that maybe there is a group of individuals or a group of children that shouldn’t have a particular vaccine or shouldn’t have vaccines on the same schedule. I do not believe that if we identified a susceptibility group, that if we identified a particular risk factor for vaccines; or if we found out that they should be spread out a little longer, I do not believe that the public would lose faith in vaccines…. It is the job of the public health community and of physicians to be out there and to say, “Yes, we can make it safer because we are able to say, this is a subset and we’re going to deliver it in a way that we think is safer….” I think the government or certain public health officials in the government have been too quick to dismiss the concerns of these families without studying the population that got sick…. The public health officials have been too quick to dismiss the hypothesis as irrational, without sufficient studies of causation. I think they have often been too quick to dismiss studies in the animal laboratory, either in mice, in primates, that do show some concerns with regard to certain vaccines and also to the mercury preservative in vaccines. The government has said in a report by the Institute of Medicine… in a report in 2004, it basically said, “Do Not pursue susceptibility groups. Don’t look for those patients, those children who may be vulnerable.” I really take issue with that conclusion. The reason they didn’t want to look for those susceptibility groups was because they were afraid that if they found them, however big or small they were, that that would scare the public away. First of all, I think the public’s smarter than that; I think the public values vaccines, but more importantly I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show… If you read the 2004 report and converse with a few of my colleagues who believe this still to be the case, there is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. I don’t believe the truth ever scares people and if it does have a certain edge to it, then that’s the obligation of those who are delivering those facts to do it in a responsible way so you don’t terrify the public. One never should shy away from science; one should never shy away from getting causality information in a setting in which you can test it. Populations do not test causality; they test associations. You have to go into the laboratory and you have to do designed research studies, in animals. What we’re seeing is in the bulk of the population vaccines are safe. Vaccines are safe. But there may be the susceptible group. The fact that there is concern that you don’t want to know that susceptible group is a real disappointment to me. If you know that susceptible group, you can save those children. If you turn your back on the notion that there’s a susceptible group that means that you are… what can I say? [13]
Indeed.
Marcella Piper-Terry is the the founder of VaxTruth.org, and is mother to a child who was injured by vaccines. Marcella has a Master of Science degree and is an independent researcher. She is also a biomedical consultant working with families to restore the health of children who have suffered from vaccine-injury.
[1] http://www.translationalneurodegeneration.com/content/3/1/16
[2] http://finance.yahoo.com/news/study-focus-autism-foundation-finds-133000584.html
[3] http://www.cdc.gov/vaccinesafety/Concerns/Autism/cdc2004pediatrics.html
[4] http://www.cdc.gov/vaccines/schedules/hcp/child-adolescent.html
[6] http://iom.edu/~/media/Files/Activity%20Files/PublicHealth/ImmunizationSafety/DeStefanoslides.pdf
[7] http://thinkingmomsrevolution.com/stop-calling-us-crazy-autism-mmr-institutional-gaslighting/
[8] http://www.stats.org/faq_risk.htm
[9] http://www.cdc.gov/ncbddd/autism/states/comm_report_autism_2014.pdf
[10] http://tinyurl.com/novtbkx
[11] http://www.infoplease.com/ipa/A0005083.html
[13] http://www.cbsnews.com/news/the-open-question-on-vaccines-and-autism/
Marcella,
You have estimated approximately 250,000 additional cases of autism among the African-American community due to the CDC suppressing information about the results of the circa 2000 MMR vaccine-autism link study. Have you, or anyone else, estimated the number of additional cases of autism in the Isolated Autism group purportedly identified in the same study? The pool for this latter group encompasses all children, not limited to one race or ethnicity, and for even modest increased autism incidence rates, could be far larger than the above number.
Posted by: Ronald Kostoff | August 27, 2016 at 10:54 AM
". . . the rate of autistic regression in black children is reported to be twice that in white children."
And yet nothing in the data elucidates whether the autism diagnosis came before or after receiving an MMR injection.
Kind of hard to claim cause and effect if the effect preceded the putative cause.
Posted by: argus | August 29, 2014 at 05:59 AM
Regarding the real-world rate of autism in black children, in the video Dr. Wakefield says that the rate of autistic regression in black children is reported to be twice that in white children.
Posted by: Carol | August 28, 2014 at 03:28 PM
I think the damaged children that have autism, ADD, ADHD, tics, bipolar, diabetes, gut issues, learning and language issues, etc..... take all those children...all the children we have seen through our youngest son and oldest grandson, both with autism..we say 1 in 10 children damaged in some way from vaccines. We are very active in many ways in our community with 4 adult children and 7grandchildren.
There needs to be open hearings, and jail time for the cover-up, and for continuing to poison our children.
Posted by: ldb | August 27, 2014 at 11:14 PM
". . . at p=0.0019, which means the probability of Dr. Hooker’s findings being by chance was approximately 1 in 1,000."
That's actually a lot closer to 2 in 1,000. (1.9 rounds to 2, not 1)
"A 1 in 1,000 level translates to 999% assurance that what you’re seeing is real and not by chance."
Really? Is it possible to be over 9 times more than 100% sure of something?
Posted by: Argus | August 27, 2014 at 12:32 PM
Thank you for clarifying what the study represents.
I'm unclear on whether other vaccine uptake was matched between cohorts? Or is it at all possible that the groups in the study only received MMR and no other vaccinations? It seems to me that if MMR was only first given after 3 years, that it may be likely other vaccines were delayed/avoided in that group.
I'm thinking it might be helpful to communicate that we do not know the overall risk for developing autism from any one vaccine on the schedule nor from the schedule in entirety.
Posted by: Jeannette Bishop | August 27, 2014 at 12:24 PM
@JCL-
Here is a detailed explanation by Dr. Hooker about the analysis- it may answer your questions.
http://www.voiceamerica.com/episode/79945/dr-brian-hooker-on-mmr-study-statistics-with-marcella-piper-terry-and-candyce-estave
IMO it is manifest and obvious to anyone looking for it. Vaccine injury is the single biggest driver in "vaccine hesitancy"- not celebrities, not internet conspiracies, but first hand, observed, irrefutable (by anyone not administering, recommending, requiring, or selling vaccines) reactions. There are numerous studies by various vaccine promotion organizations who cannot understand why parents would reject the single best medical intervention ever. Here is a PPT by describing the Oregon Vaccine Hesitancy Index-
Slide #10
"Social Closeness to Harm
Parents were asked if:
they knew about children hurt by vaccines,
they had read or heard about hurt children, and
they knew someone with an allegedly hurt child, including their own.
The closer the source of any alleged harm, the more impact it is likely to have on vaccination attitudes and decisions"
Which is really just common sense.
http://www.scribd.com/doc/237894435/Oregon-Vaccine-Hesitancy-Index-PPT
Lane County Oregon Vaccine Hesitancy Study
Slide 20 describes the insignificant impact that celebrities, etc., have on vaccine decisions.
https://scholarsbank.uoregon.edu/xmlui/bitstream/handle/1794/13037/Lane%20County%20Public%20Health%20MPA%20Capstone%20Project%205%2023%2013.pdf?sequence=1
Posted by: Vaccine Information | August 27, 2014 at 12:18 PM
JCL actually brings up a valid point that is worth addressing. It only takes a few minutes on Google Scholar to get some preliminary data/clues on the issue of autism amongst the African American population in the US and whether there is any increased risk.
As JCL wrote, “it seems so large that surely there are some figures which at least suggest this increased risk.”
And, indeed there are. Keep in mind this is only from a few minutes of searching through published studies, but the data is certainly suggestive of an increased risk of ASD among African-American children. Here are some relevant data points, further searching might uncover more:
1. African-American children are under-represented in autism studies (see Reference 1)
2. African-American children are diagnosed later than white children, which may significantly affect autism statistics (see Reference 2)
3. ASD may present differently in African-American children, which may skew diagnosis (and subsequently, autism statistics). (see Reference 3)
4. African-American children may be under-diagnosed with milder forms of ASD compared to white children. (see Reference 4)
5. When studies specifically look at autism by race, they find an increased risk among African-American groups (as well as others). (see Reference 5)
6. African-American children with ASD are more likely to have a co-morbid diagnosis of mental retardation (with a plausible impact on ultimate diagnosis, and therefore autism statistics). (see Reference 5)
So, yes, its quite plausible that African-American children exhibit an increased risk of autism. It seems worthy of investigation as to why.
Ref 1: “African American children with autism are seriously under-represented in existing genetic registries and biomedical research studies of autism.”
(Brief Report: Under-Representation of African Americans in Autism Genetic Research: A Rationale for Inclusion of Subjects Representing Diverse Family Structures, 2010, http://link.springer.com/article/10.1007/s10803-009-0905-2)
Ref 2: “Research has shown that on average African Americans receive a diagnosis of one and a half to 2 years later than white children. This delay has grave consequences for treatment options and subsequent severity of symptoms. African American children are not typically included in research studies that can help differentiate if there are phenotypic characteristics that would necessitate another type of treatment course. Further, there may be inherent biases against certain cultures, and these biases could result in the disparate diagnosis and/or treatment for African American children and their families if they are not acknowledged and addressed when developing treatment plans.”
(Autism in the African American Population, 2014, http://link.springer.com/referenceworkentry/10.1007%2F978-1-4614-4788-7_155)
Ref 3: “This study suggests differences in the types of ASD symptoms and associated behavioral features exhibited by African American as compared to white children with ASD. Further research is needed to determine if these differences contribute to disparities in the timing or type of ASD diagnosis.”
(A comparison of Autism Spectrum Disorder DSM-IV criteria and associated features among African American and white children in Philadelphia County, 2012, http://www.disabilityandhealthjnl.com/article/S1936-6574(11)00069-0/abstract)
Ref 4: “Past research indicates that non-Hispanic black (NHB) children are less likely than non-Hispanic white (NHW) children to have an autism spectrum disorder (ASD) diagnosis, even if they seem to meet criteria for the disorder…NHB children were less likely than NHW children to have been identified with less severe ASDs, which might have prevented or delayed intervention services that would have catered to their needs. This study illustrates the need for continued professional education, particularly concerning milder ASDs in minority groups.”
(Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000–2006, 2011, http://journals.lww.com/jrnldbp/Abstract/2011/04000/Racial_Disparities_in_Community_Identification_of.1.aspx)
Ref 5: “We found increased risks of being diagnosed with AD overall and specifically with comorbid mental retardation in children of foreign-born mothers who were black, Central/South American, Filipino, and Vietnamese, as well as among US-born Hispanic and African American/black mothers, compared with US-born whites. Children of US African American/black and foreign-born black, foreign-born Central/South American, and US-born Hispanic mothers were at higher risk of exhibiting an AD phenotype with both severe emotional outbursts and impaired expressive language than children of US-born whites..”
(Autism Spectrum Disorders and Race, Ethnicity, and Nativity: A Population-Based Study, 2013, http://pediatrics.aappublications.org/content/early/2014/06/17/peds.2013-3928.abstract)
Posted by: ConcernedParent | August 27, 2014 at 12:01 PM
Well, this does not bode well:
http://www.translationalneurodegeneration.com/content/3/1/16/abstract
"This article has been removed from the public domain pending further investigation because the journal and publisher believe that its continued availability could cause public harm. Definitive editorial action will be taken once our investigation is complete."
Posted by: Lawrence | August 27, 2014 at 11:56 AM
I would suggest to JCL that the observed and clearly reported (here) increased incidence of autism in the Somali group in Minnesota is certainly supportive of the suggested increased risk to African American children. Perhaps one of the editors here could post the links to the past coverage of that dire situation on AoA. I also think I recall some anecdotal reports posted in comments here about the high incidence of non-white children in autism classes in certain areas.
Also, I suspect that given the expense and difficulty of getting an official autism diagnosis and the relative socioeconomic status of African American children compared to other ethnic groups in the US, it seems quite likely to me that a significant portion of the black children who are not clearly and severely affected by autism may remain undiagnosed or more likely diagnosed (formally or informally) with some other disorder (like conduct disorder, Oppsositional Defiant Disorder, RAD, developmental delay, etc.) and/or their behaviors/struggles mis-attributed by doctors and schools to presumed, and likely racially biased/sterotyped assumptions, about parental neglect or drug use.
When even well-educated and well-to-do, caring white parents are frequently blamed for their affected children's misbehaviors, inability to learn, lack of social skills, etc., one cringes to imagine the derisory and derogatory treatment being received by struggling African-American parents of children with autism or autism-like behaviors.
Posted by: Truth is hard to come by | August 27, 2014 at 11:32 AM
JCL
If you have query about the maths it is perhaps ultimately better if it is addressed to Brian Hooker or Bill Thompson - and whatever the reasons for Dr Thompson's present stance it is unlikely to be personal advantage. Apart from that it is worth noting the strictures of Cochrane 2005.
"The conclusion, however, implied bias in the enrollment of cases which may not be representative of the rest of the autistic population of the city of Atlanta, USA where the study was set."
So, conflicted and self-contradictory though the review was the authors were plainly very bothered by these exclusions as a source of potential bias and were neither apparently convinced by the explanation for doing it or the assurance in the paper that it would not have affected the results.
Posted by: John Stone | August 27, 2014 at 11:06 AM
Actually I asked why it doesn't appear manifest - why in fact it requires this 'reanalysis' to uncover it given it is so large a figure. For instance, does this group and its associates have a disportionate amount of black members? Even accounting for all the other socioeconomic etc factors, surely such a large figure woud in fact be reasonably clear (albiet in the informal hypothesis-needing-confirmed manner) to interested parties such as relevant health workers and groups like yourselves.
To take an extreme case - suppose someone told you that statistically women were shorter than men but this fact had been covered up, surely you would say - 'but I can see that that is true anyway walking down the street - how can anyone cover it up?' - ok the case in question is obviously not so ostensibley true, but I'm asking how can such a large figure be unnoticed - even anecdotally - and how can such a large figure even be covered up, when even basic research by interest groups like yourself, would surely spot the trend. Sorry, but I'm not sure it holds water - surely groups like yourself doing similar research, certainly on raw incidnece rates would have noticed such a trend -and now the cats out the bag so to speak - surely it should be extremely easy to confirm at least the possited trend? Can you confirm sucj a trend from your own membership for instance?
Posted by: JCL | August 27, 2014 at 10:21 AM
JCL,
It has been spotted by interested parties. They buried it. That's the point.
Posted by: Linda1 | August 27, 2014 at 09:58 AM
The IOM report Dr. Healy references is online- and I believe this is a pertinent paragraph from the Executive Summary;
"While the committee strongly supports targeted research that focuses on better understanding the disease of autism, from a public health perspective the committee does not consider a significant investment in studies of the theoretical vaccine-autism connection to be useful at this time. The nature of the debate about vaccine safety now includes the theory by some that genetic susceptibility makes vaccinations risky for some people, which calls into question the appropriateness of a public health, or universal, vaccination strategy. However, the benefits of vaccination are proven and the hypothesis of susceptible populations is presently speculative. Using an unsubstantiated hypothesis to question the safety of vaccination and the ethical behavior of those governmental agencies and scientists who advocate for vaccination could lead to widespread rejection of vaccines and inevitable increases in incidences of serious infectious diseases like measles, whooping cough, and Hib bacterial meningitis.
The committee encourages that research on autism focus more broadly on the disorders’ causes of and treatments for it. Thus, (bold in the document) “the committee recommends a public health response that fully supports an array of vaccine safety activities. In addition the committee recommends that available funding for autism research be channeled to the most promising areas.”
The committee emphasizes that confidence in the safety of vaccines is essential to an effective immunization program—one that provides maximum protection against vaccine-preventable diseases with the safest vaccines possible. Questions about vaccine safety must be addressed responsibly by public health officials, health professionals, and vaccine manufacturers. Although the hypotheses related to vaccines and autism will remain highly salient to some individuals, (parents, physicians, and researchers), this concern must be balanced against the broader benefit of the current vaccine program for all children."
http://books.nap.edu/openbook.php?record_id=10997&page=11
Doesn't this state that the policy of the IOM is to not conduct any research "which calls into question the appropriateness of a public health, or universal, vaccination strategy"?
Posted by: Vaccine Information | August 27, 2014 at 09:50 AM
There is a bit of erroneous reasoning in your steps. Maths is by nature pedantic so let me point out that you can't simply multiply the overall rate X by the increased factor - you have to make overall adjustments so that X remains constant. However, this elementary error not withstanding, the figure of increased risk is so large that one expects it to be almost 'manifest' in the population - ie we expect (approx) 1 in 3 kids with autism to be black, rather than 1 in 7 and such an increase seems to me to have been likely to be noticed anecdotally (and then statistically verified) rather than vice versa.
I realize that there are many factors also in play, but again it seems so large that surely there are some figures which at least suggest this increased risk? Why, given it is so large, has it not been spotted by interested parties, whatever their stance on the underlying question?
Posted by: JCL | August 27, 2014 at 09:26 AM
Dr. Bernadine Healy:
"The government has said in a report by the Institute of Medicine… in a report in 2004, it basically said, “Do Not pursue susceptibility groups. Don’t look for those patients, those children who may be vulnerable.” I really take issue with that conclusion. The reason they didn’t want to look for those susceptibility groups was because they were afraid that if they found them, however big or small they were, that that would scare the public away"
Suppose "the reason they didn't want to look at those susceptibility groups" .. was NOT because they were afraid "if found .. they would scare the public away"?
Suppose it was far more sinister .. Tuskogee? .. than that?
Posted by: BoB Moffitt | August 27, 2014 at 08:02 AM
The author of this article, apparently, is Marcella Piper-Terry, MS, a biomedical specialist at Cady Wellness Institute. You can see her April 9, 2014 presentation, "Autism is Treatable," including "What are we really facing," at https://www.youtube.com/watch?v=4TBaUfltISo
Posted by: Dan Burns | August 27, 2014 at 07:51 AM