Tag Archives: Autism

Andrew Wakefield’s CDC Whistleblower documentary trailer. Words can not do this justice.

20 Nov

Andrew Wakefield, the British former academic surgeon who fueled the MMR scare, has turned to film making as his career.  Someone chose Mr. Wakefield to manage the publicity for what they termed the “CDC Whistleblower” incident. to recap that: a William Thompson from the CDC had the extreme bad judgment to approach Brian Hooker with concerns about an old MMR/autism study.  Mr. Hooker is well known for his antagonistic stance on vaccines and his bad science attempting to link vaccines and autism.  Mr. Hooker published a (now retracted) study based on the information given to him by Mr. Thompson at CDC.  To publicize this “CDC Whistleblower” incident, Mr. Wakefield came out with probably the most over-the-top bad video I’ve ever seen.   It’s basically the Plan 9 From Outer Space of mini documentaries, complete with Mr. Wakefield’s voice over claiming that the CDC are worse that Hitler, Pol Pot and Stalin.  Those dictators, you see, were at least sincere in Mr. Wakefield’s view.

Well it seems Mr. Wakefield wants to expand the “CDC Whistleblower” story to a full documentary.  He has an indigogo campaign to raise funds. As of now, it has collected $2,213 of his $230,000 goal.

And now he has a trailer.  It is seriously worth a look.  And before you read my own commentary on this one.  Here, go ahead:

https://youtu.be/n6inPdwtCQA

Thankfully it is not as long at the Hitler/Pol Pot/Stalin video so I could manage to watch it again.  Because on one view I just had to say–really? Is this for real?

We start out with a shadowy figure. Presumably an actor playing the role of the whistleblower (although, physically he looks more like Poul Thorsen than Mr. Thompson).

Feast-shadow figure

Interspersed with video of autistic kids in severe distress, we get images of police in riot gear.  Because, that’s what one does in a documentary, splice in footage that has nothing to do with the story, right?feast-riot gear

And, lest we forget, a helicopter.  Black.  Has to be black.  OK, it looks like only the bottom is black, but as that quick clip went by all I could think was “really?  A black helicopter? ”

feast black helicopter

And in case we had any remaining thoughts that this was a documentary, enter the image of a house as seen through a sniper scope.  As the sniper scope zooms in we see that the target is an African American in a wheel chair.

feast sniper

Perhaps this is some sort of allusion to Mr. Wakefield’s first video, the Hitler/Pol Pot/Stalin video where he claimed that the CDC was engaging in a new Tuskegee experiment.   If so, why is the image of an African American female? I ask because the alleged controversy Mr. Wakefield is trying to highlight was about African American males.

The video ends with footage of parents telling us that vaccines cause autism and an actor (presumably representing the “whistleblower”) walking up some stairs.  Finally, Congressman Darrell Issa is shown banging a gavel at a congressional hearing.  From the start of these events, Mr. Wakefield and Mr. Hooker and their team have been calling for a congressional hearing.  I do hope they sent this video (and the Hitler/Pol Pot/Stalin video) to Mr. Issa’s office.  I have a feeling that since the time that Mr. Issa accepted $40,000 in donations from people seeking a congressional hearing, he’s learned a great deal and this video will further his education.

The sad part of this is the exploitative use of autistic children seen under severe distress.  This exploitation does nothing to serve the very real needs of our community.  Also seen towards the end are images of Avonte Oquendo, who went missing from his school and was found dead months later.  Again, exploitation which does nothing to serve our communities.  Mr. Wakefield is grabbing whatever film clips he can whether they are related or not to his purported story.  This is the same trick he used with a previous trailer he produced, where he spliced video from the Judge Rotenberg Center into a completely different story.

If Mr. Wakefield weren’t doing so much damage to my community, his videos would be laughably bad.  I’m not laughing.

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By Matt Carey

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Final Reminder: 2014 IACC Call for Nominations Closes Friday, November 14, 2014!

13 Nov

The email below was just sent by the Office of Autism Research Coordination to remind the communities that the Interagency Autism Coordinating Committee is being reformed–nominations are still open but only until tomorrow.

In other words: if you want to be considered, or if you want to nominate someone else for consideration, now is the time to get those nominations in.

From OARC:

Final Reminder: 2014 IACC Call for Nominations Closes Friday, November 14, 2014!

Only one more day to send in submissions!

The Office of the Secretary of Health and Human Services (HHS) is seeking nominations of individuals to serve as non-federal public members on the Interagency Autism Coordinating Committee, a federal advisory committee established in accordance with the Combating Autism Act of 2006 (Public Law 109-416, PDF – 49 KB) and reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (Public Law 113-157, PDF – 211 KB).  The Committee, composed of federal officials and public stakeholders, provides recommendations and advice to the Secretary of HHS regarding issues related to autism spectrum disorder (ASD), including ASD research and services activities.

The Office of the Secretary of HHS has directed the Office of Autism Research Coordination to assist the Department in conducting an open and transparent nomination process. Nominations of new public members are encouraged, and current members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted. Final selections and appointments of public members will be made by the Secretary. The period of service will be from the time of appointment through September 30, 2019.

The call for nominations opened on October 1, 2014 and will close at the end of the day (11:59 p.m.) on November 14, 2014. Please ensure e-mails or standard mail/Fedex are sent and date and time stamped by the given deadline.

Please click on the links below for information about the committee, and the requirements and instructions for submitting a nomination.

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London McCabe

8 Nov

London McCabe was a six year old kid.  He was a kindergartner whose principal described him as loving to sing and happy.  He liked hats.

I wish when news outlets would report on murders, they would start with who was killed.  The good points of the person.  What we as a people lost.

I bring that up because, as you likely suspect, London McCabe was killed.  Earlier this week, London McCabe was killed when his mother threw him from a bridge, from which he dropped about 133 feet to the frigid waters of a river below.  That’s about a three second fall.  Three seconds is short, I grant you, but long enough to feel abject terror.

If news articles focused on the victim, perhaps that sort of fact would come forward.  Perhaps we would be put in the place of sympathizing with the victim.

When you think of secondary victims, they would be the family and friends who knew and loved London.   People who had no way to avoid thinking about how he died.  I know I can’t avoid it. I can’t avoid thinking of my own kid terrified and falling.

I wish news articles wouldn’t immediately jump on the disability (or disabilities) of the victim, like the first article I saw.  For London McCabe was autistic.  Nonverbal.

Facts about motive are very scarce right now.  There are indications that the mother suffered from some mental illness.  As a community we’ve seen that argument play out all too often as a “blame the victim” approach: it’s hard to raise an autistic child and the parent buckled under the pressure.  We’ve seen this approach used cynically.  That doesn’t preclude actual mental illness in this case.  We ask for equality in the treatment of those who kill in our community.  Equality means not throwing our friends in the mental illness community under the bus.  The disability of the victim is not an excuse.  It is not a mitigating factor.  Real mental illness is.  Let’s see what the facts are in this case.

London McCabe’s family is not ready to discuss the details, but has released this message at a prayer vigil:

We are deeply touched by the community outpouring of love and support for our family…The best way you can honor him and not let his death be in vein is to purpose in your hearts to respond in kindness, love and respect toward all those people in your lives especially those with special challenges…Don’t allow hatred, anger, bitterness, or revenge to fill your heart

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By Matt Carey

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Andrew Wakefield: paid $316k to administer $80k in grants by the Strategic Autism Inititiative

7 Nov

When Andrew Wakefield left Thoughtful House (which has since changed it’s name and removed all mention of him from their website), he announced a new effort: the Strategic Autism Initiative. He was going to manage research into the causes of autism. That was in 2010. Now he bills himself as a video director of the Autism Media Channel. Makes one wonder how well that Strategic Autism Initiative thing worked out.

Well, we can’t tell for sure as tax forms are only available through 2012. But the trends tell us that perhaps, just perhaps, the Strategic Autism Initiative lost steam in their fundraising.  Donations are way down.  And a lot of money has gone into salaries and very little into actual programs.

Strategic Autism Initiative 2010 tax form
Strategic Autism Initiative 2011 tax form
Strategic Autism Initiative 2012 tax form

Let’s do a little summarizing. Let’s look at trends for the money they take in (contributions) and the money that they’ve put out in salaries. The Strategic Autism Initiative pays Andrew Wakefield and Terry Arranga.

SAI contributions and salaries

OK, you gotta hand it to Andrew Wakefield–he pulled in $623k in 3 years, basically on his name and reputation. And, he took $316k of that money, about 50%. In total, salaries accounted for 58% of what the SAI took in. The first year of the SAI (2010) was a short year, hence the low salary. Mr. Wakefield’s salary appears to be based on $270,000/year full time. Officially he was working 30hours/week in 2010 and 2011. 15 hours/week in 2012.

Notice that the contributions were way down in 2012. Still a sizable $113k, but down from the previous years.

How does the salary outlay compare to the intake over the years? Well, it was relatively low the first year (the short year) and climbed to 80% in 2011 and 100% in 2012.

Salary Fraction

Not what one would call sustainable. Well, I guess if all one does is put money into salaries, that’s sustainable. Not exactly what a charity is supposed to be, though. Which begs the question, how much money did they have on hand at the end of each year?

Assets

Yep, pay out most of your money in salary and watch your assets go down. Also gives a partial explanation for why Mr. Wakefield is only listed as working 15 hours a week in 2012–there wasn’t the money to pay him more. The SAI would be about $70k in debt had they paid him for 30 hours/week.

In 2010, they paid out $20,260 in a grant to perform a UK Somali study.

SAI 2010 grants

In 2011 they paid out a $25k grant to Generation Rescue for a “vax/unvax study”

SAI 2011 grants

In 2012 they paid out $35k in grants. One to Mr. Wakefield’s former Thoughtful House colleague Arthur Krigsman and another to the Geiers for a study using the Florida medical database.

SAI 2012 grants

So, let’s consider this. In three years, Mr. Wakefield managed to give out 4 grants. Total of about $80k in grants. And for that effort he was paid $316k. What’s the supposed goal of the Strategic Autism Initiative?

SAI mission

“…to promote research in areas of autism and neurological disorders…”

Right. Promote research. About 13% of their budget went to promoting research. And that’s before we even consider the quality of that research.

Some bright people believe Andrew Wakefield. Some wealthy people believe Andrew Wakefield. Why, I don’t know. But even those who believe in what he says may someday question whether getting $0.13 on the dollar to the cause is worth keeping Andrew Wakefield employed.

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By Matt Carey

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A look at the analysis plan for DeStefano’s MMR study: no evidence of fraud

16 Oct

Andrew Wakefield and Brian Hooker have been making claims that the CDC are involved in misconduct in autism research. In case you haven’t followed the story, it basically goes like this:

1) the CDC planned on a study of MMR and autism using the MADDSP data.

2) That the CDC created a research plan.

3) That the CDC found results they didn’t want to report: an calculated odds ratio for African American boys. So the CDC team allegedly deviated from that plan and didn’t report that result.

4) That the CDC introduced a new analysis after the plan: that they would include birth certificate data.  While the CDC rationale for this new analysis was to provide more data (confounding variables) for the analysis, the allegedly real reason was to dilute the sample set and make statistically significant results disappear.

Here’s a paragraph from one of the press releases about the Hooker study:

According to Dr. Thompson’s statement, “Decisions were made regarding which findings to report after the data was collected.” Thompson’s conversations with Hooker confirmed that it was only after the CDC study coauthors observed results indicating a statistical association between MMR timing and autism among African-Americans boys, that they introduced the Georgia birth certificate criterion as a requirement for participation in the study. This had the effect of reducing the sample size by 41% and eliminating the statistical significance of the finding, which Hooker calls “a direct deviation from the agreed upon final study protocol – a serious violation.”

Or so goes the story. But as is often the case with Andrew Wakefield and Brian Hooker, the facts don’t match the claims.

In a recent video, Mr. Wakefield shows us the research plan the CDC had drafted.  One red flag with Mr. Wakefield’s approach so far has been how he tries to tightly manage the flow of information.  He has not shared the analysis plan in total and only now has he provided us with a couple screenshots.  Begs the question: what are they hiding?

Here’s one screenshot from that video. This one is where he gets the idea that the plan was to report race for the entire sample.

draft analysis plan screenshot 2

Here’s the full text, in case that’s difficult to read:

Statistical Analysis

We will use conditional logistic regression stratified by matched sets to estimate the odds ratios for association between age at MMR vaccination and autism. In the main analyses, we will include all autism cases.

Potential confounding variables will be evaluated individually for their association with the autism case definition. Those with an odds ratio p-value < 0.20 will be included as covariates in a conditional logistic regression model to estimate adjusted odds ratios for the association between age at vaccination and autism. The only variable available to be assessed as a potential confounder using the entire sample is child’s race. For the children born in Georgia for whom we have birth certificate data, several sub-analyses will be carried out similar to the main analyses to assess the effect of several other potential confounding variables. A recent case control study (CDC, 2001) carried out with a subset of the autism cases from this study found that age matched cases and controls differed on several important background factors including maternal age, maternal education, birth type, and parity. The variables that will be assessed as potential confounders in this study will be birth weight, APGAR scores, gestational age, birth type, parity, maternal age, maternal race/ethnicity, and maternal education. (See Table 2 for how variables will be categorized.)

There are two interesting points in the above.  First, the sentence Mr. Wakefield highlights doesn’t say what he claims.  The only variable available to be assessed as a potential confounder using the entire sample is child’s race. The plan doesn’t say that they will test and report race.  Consider the context: this is a section of the plan called “statistical analysis”. Put in context with the entire paragraph, this sentence is clear: the full dataset is limited because it only has one variable available.

The CDC didn’t deviate from the plan when they didn’t report on race for the total sample because that was never in the plan.  If you want more evidence of this, the end of the paragraph says “See Table 2 for how variables will be categorized”.  Table 2 is titled “Descriptive Statistics for Children Born in Georgia with Birth Certificate Records”.  The variables will be categorized in the birth certificate sample.

The second interesting point from the paragraph Mr. Wakefield has shown us is this: the CDC plan included a birth certificate sample.

Here’s a screenshot of the analysis plan from that new video, showing the front page of the analysis plan:

draft analysis plan screenshot

Shown with this voice over by Mr. Wakefield (while the screenshot above is shown going up in flames…very dramatic)

“Over the ensuing months, after the data after the data had been collected and analyzed, and strictly forbidden in the proper conduct of science, the group abandoned the approved analysis plan, introducing a revised analysis plan to help them deal with their problem.”

So, in case you were thinking, “that’s an analysis plan, how do we know it’s the analysis plan”, well, you have Mr. Wakefield’s word on it.  This is the “approved analysis plan” that the CDC allegedly had to revise.

What interests me about this as that’s the same plan that I have and was preparing to write about.  It’s nice now to be able to be able to say that this is, indeed, the same document that Mr. Wakefield and Mr. Hooker are working with.

We’ve already seen two big mistakes by the Wakefield/Hooker team: first that the analysis plan doesn’t include a call to report on race separately in the total sample (the group without the birth certificates), second that the CDC “approved analysis plan” included analysis of a subset with birth certificate data.

So, what were the objectives of the study as in the plan?

Objectives:
We did not have information regarding onset of symptoms for most cases in this study and this limited our ability to do certain types of analyses such as case series analyses. In addition, a totally unexposed group (i.e., never received the MMR vaccine or other measles containing vaccine) was not available since measles, mumps, and rubella vaccination are required for school attendance in Georgia. The following objectives are considered the primary objectives for this study.
1) To determine if case children were more likely than their matched controls to have been vaccinated with MMR before 36 months of age. DSM-IV criteria for autism require that onset of symptoms occur before 36 months of age. Therefore, the 36-month cut-off is one that by definition can be used to classify a definitely “unexposed” group.
2) To determine whether there was a difference between cases and controls in the proportion of children exposed to their first dose of MMR vaccine before 18 months of age. This objective is based on the research that suggests the timing of first parental concern for the development of autism appears around 18 months of age (Taylor et al, 1999). In addition, Cathy Lord has reported that the range of first parental concern for regression was between 12 and 23 months of age with a mode of 19-21 months.
3) To determine whether the age distribution for receipt of the MMR vaccine differs between cases and controls.

They showed the data for the 36 and 18 month cutoffs.  Age distribution was covered in Table 2.

Analysis of Autism subgroups

The IOM (2001) specifically recommended additional research regarding autism subgroups and MMR. We will examine several subtypes of autism in this study. Data from the Metropolitan Atlanta Congenital Defects Program will be included in the sub-analyses to identify particular sub-groups. The following sub-group analyses will be conducted:

1) Analyses excluding cases with an established cause for autism or a co-occurring condition suggesting an early prenatal etiology (e.g., tuberous sclerosis, fragile X, or other congenital/chromosomal anomalies.)

We propose to conduct a case-control sub-analysis looking at cases without an established or presumptive cause for autism, such as tuberous sclerosis, fragile X, and other congenital/chromosomal anomalies. The purpose of doing this analysis is to create a more homogeneous case group that may be more likely to be impacted by the timing of the MMR vaccine. The objectives from the primary analyses will be replicated in this sub-analysis.

2) Analyses of Isolated versus Non-isolated Autism.

Isolated autism cases are cases with no other co-morbid developmental disability while non-isolated cases do have a co-morbid developmental disability. Previous research suggests that the majority of non-isolated cases have a co-existing developmental disability of mental retardation (CDC, 2001). Both isolated and non-isolated cases will be compared separately to controls. The objectives from the primary analyses will be replicated in this sub-analysis.

3) Analyses examining Gender Effects

Males are at substantially higher risk for autism and may be more vulnerable to the exposure associated with the MMR vaccine. We will analyze males and females separately and replicate the main objectives of the primary analyses as well as examine the potential confounders available from Georgia birth certificates.

4) Analyses excluding autism cases with known onset prior to 1 year of age.

For a subset of autism cases, we were able to identify the timing of parental concern. This sub-analysis will exclude all cases excluded with an established or presumptive cause for autism (e.g., tuberous sclerosis, fragile X, and other congenital/chromosomal anomalies.) and children for whom we have been able to identify first parental concern prior to 12 months of age.

Just in case anyone reading this is one of the few that has been following Mr. Wakefield’s video releases: in a new video Mr. Wakefield is trying to claim that the isolated autism subanalysis was not done.  Except that it was.  They made a minor change to autism without MR, which gave essentially the same result that Mr. Wakefield claims was hidden.

Destefano_table_4 highlighted

Autism without MR has an odds ratio of 2.45 with a 95% confidence interval of 1.20 to 5.00.  I’ll write about this new video soon as there’s much sleight of hand going on, but Mr. Wakefield is claiming that a result of odd ratio = 2.48 with confidence interval of 1.16 to 5.31 was not reported.  Besides ignoring the fact that the data were reported by the CDC, Mr. Wakefield ignores the fact that these are raw-data results.  Total sample, unadjusted analysis.  In the adjusted analysis the result does not suggest an association.

But, getting back to the main point: the claims of fraud are just not founded on fact.  The two main claims of “fraud” are just wrong.  The analysis plan did not state that they would do a subanalysis by race for the total sample.  The addition of the birth certificate data is in the plan, not in some sort of revision.  And Mr. Wakefield and Mr. Hooker knew this.

I am reminded of a quote from an ABC News article recently

“There are always going to be those people at the edges of science who want to shout because they don’t want to believe what the data are showing,” said Dr. Margaret Moon, a pediatrician and bioethicist at Johns Hopkins Berman Institute of Bioethics. She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”

“It’s not good. It’s not fair. It’s not honest. But it’s savvy,” Moon said.

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By Matt Carey

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Jude Mirra’s mother takes the stand in murder case

9 Oct

Jude Mirra was an autistic 8 year old.  Was as in he’s dead.  His mother killed him with a fatal overdose of drugs and alcohol.  His mother, Gigi Jordan, is now on trial for his murder.

If you have followed this story, you likely know what a strange story she has told.  At one point someone (presumably associated with her) posted multiple documents online (gigijordanbail.com as I recall).  Rather than focus on her account, let’s consider the facts.  She killed her son.  The only question now appears to be whether she forced the drugs into his mouth or not.  From the New York Times, In Testimony, Mother Who Killed Son, 8, Denies She Forcibly Drugged Him:

The police found the boy, Jude Mirra, dead in a bed at the Peninsula Hotel at about noon on Feb. 5. The door had been barricaded with a chair. Ms. Jordan was on the floor next to the bed, surrounded by pills. A pill crusher and a syringe used to force feed patients were discovered, along with empty vodka bottles.

An autopsy showed Jude had ingested fatal doses of several medications, including the sleeping pill Ambien and the tranquilizer Xanax. A medical examiner testified the boy had bruises on his face and chest consistent with having a mixture of pills forced down his throat.

She claims that her son was being abused by multiple people, including his biological father.  And, her story goes, she was being stalked by her son’s legal father (her former husband) who was trying to have her murdered. And, if I recall correctly, he also was allegedly abusing Jude.  She had to kill her son, you see, to protect him from falling into the hands of his abusers.

The Post discusses her stories in Someone lock up Gigi Jordan once and for all!.  But what do we have except another version of “I had to kill him to protect him”.

CNN is also reporting the story, noting:

“His fate was sealed,” assistant district attorney Matt Bogdanos said in opening statements. “He didn’t die fast. One by one, his vital organs shut down. It didn’t take minutes. It took hours to die.”

While Jude lay dying, Bogdanos said, Jordan sent an email to a financial adviser instructing him to transfer the $125,000 trust she set up for her son to her personal account.

It took him hours to die.  And the mother, who supposedly was attempting suicide, transferred money out of his account while he was dying.  It’s not like the police arrived just in time to save the mother from her pills, either:

The exact time of the boy’s death could not be determined, but Jude’s body temperature was 80 degrees, suggesting that when police arrived, he had been dead for 8 to 14 hours, Bogdanos said.

Sadly, Jude’s mother appears to have been a part of the “cure at all costs” community.  The New York Times is also reporting.

For several years, Ms. Jordan took him to medical specialists across the country, seeking a cure for his symptoms and subjecting him to experimental chemotherapy, injections of powerful steroids and filtering his blood to counteract autoimmune disorders.

How much did the false hope sold by charlatans play into this murder?  We may never know.  Jude died in 2010 at age 8.  He grew up during the height of the “better dead than autistic” rhetoric.

Jude’s mother is reportedly using her defense to obtain a manslaughter conviction rather than murder.  She’s quoted as calling this a “mercy killing”.

This is no mercy killing.  This is murder.  Brutal murder.  I hope the jury sees through Ms. Jordan’s bizarre stories.

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Matt Carey

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Retracted: Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data

5 Oct

About two months ago an autism parent published a study: a “reanalysis” of a CDC dataset. That study: Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data.

Here’s a screenshot of how the article looks online today (click to enlarge):

BadStudyRetracted

The retraction reads:

The Editor and Publisher regretfully retract the article [1] as there were undeclared competing interests on the part of the author which compromised the peer review process. Furthermore, post-publication peer review raised concerns about the validity of the methods and statistical analysis, therefore the Editors no longer have confidence in the soundness of the findings. We apologise to all affected parties for the inconvenience caused.

Previously, the editors had an “expression of concern” about the article:

The Publisher of this article [1] has serious concerns about the validity of its conclusions because of possible undeclared competing interests of the author and peer reviewers. The matter is undergoing investigation. In the meantime, readers are advised to treat the reported conclusions of this study with caution.

Further action will be taken, if appropriate, once our investigation is complete.

Comment on

Brian Hooker. Measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data. Translational Neurodegeneration 2014, 3:16.

An excellent discussion of this study and the questions raised by it can be found at MMR, the CDC and Brian Hooker: A Guide for Parents and the Media

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By Matt Carey

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Brian Deer’s original 2004 Channel 4 report on Andrew Wakefield: MMR: What they didn’t tell you

5 Oct

When Andrew Wakefield presented his hypothesis linking autism to the MMR vaccine in 2014 1998, he fueled a vaccine scare that is still alive today. It wasn’t until 6 years later that specifics about Mr. Wakefield’s actions were to surface. First in a newspaper story by Brian Deer (Revealed: MMR research scandal). Later that year in a BBC Channel 4 investigation: “MMR What they didn’t tell you.” I’ve never seen that Channel 4 program. Until today. Mr. Deer has placed it on YouTube. In three parts.

Part 1 introduces the topic. The MMR scare, the Wakefield 1998 Lancet paper and the press conference and the Royal Free’s video given out to the press. A discussion with an epidemiologist about the fact that there was nothing in Mr. Wakefield’s own work to support the triple MMR vaccine. Which leads us to the Wakefield patent for a substance that could be used as a vaccine–a vaccine which could only reasonably be expected to make a profit if the existing measles vaccine were considered unsafe–and as an autism “cure”.

Mr. Deer speaks with Ian Bruce, a researcher who worked with Andrew Wakefield on the patent. “The interpretation of that is quite clear to me..and that is that they have a vaccine for measles. Which presumably is an alternative to the existing vaccine.”

The thing is, the public was not told that Mr. Wakefield and the Royal Free had these commercial interests prior to Mr. Deer’s show.

Part 2 discusses the patent–the cure and vaccine aspects. The idea was that measles virus would be injected into a mouse. Those would be extracted, frozen, thawed, mixed with human cells, and injected into pregnant goats. The colostrum (part of the goat’s milk) would then form the basis of this vaccine/cure substance.

Sound like a strange idea to you? Well, Mr. Deer interviews medical experts who also think so. “the whole technique doesn’t make sense”. “It’s not credible”. “It’s strange”.

Mr. Deer tries to interview Dr. Roy Pounder, Mr. Wakefield’s former supervisor at the Royal Free. Mr. Pounder at first agrees then refuses to be interviewed.

Mr. Deer then goes to American and interviews Hugh Fudenberg, collaborator with Mr. Wakefield and co-inventor on the patent. Mr. Fudenberg at the time was charging up to $750 an hour to see and treat autistic children. He too considers Mr. Wakefield’s treatment to be unfounded. However, Mr. Fudenberg had a cure of his own, made from his own bone marrow.

Mr. Deer discusses some of the criticism of Mr. Wakefield’s work, including a statement from someone who worked in the Royal Free Hospital, including a comment that the work amounted to abuse.

Part 3 includes a discussion with Nick Chadwick, a student in Mr. Wakefield’s laboratory during the MMR/Autism research. Mr. Chadwick tested the tissues for measles virus, and found there was none in the autistic children being seen by Mr. Wakefield’s team. Also interviewed was Ian Bruce, a colleague of Mr. Wakefield’s, and also a supervisor for Nick Chadwick. Both Chadwick and Bruce are highly confident that if there were measles virus in the tissues, they would have detected it.

Mr. Deer discusses the 2000 measles outbreak in Ireland. He interviews the parents of one of the children who died in that outbreak. For those who keep saying that measles is mild, that in first world countries no one dies or is injured, here’s what a child dying of measles looks like in the first world. She took 11 months to die.

Result_of_Wakefields_Scare

Mr. Deer then goes to America to find and try to speak with Mr. Wakefield. Mr. Wakefield was listed as “research director” for Jeff Bradstreet’s clinic in Florida, but wasn’t there. The Bradstreet clinic had a host of supplements that one could purchase to “treat” autism. Mr. Deer eventually finds Mr. Wakefield at an Autism Society of America convention. Whereupon Mr. Wakefield runs away.

By the way–Thank you ASA for no longer inviting Andrew Wakefield to speak.

This investigative report together with the Sunday Times articles earlier in 2004 made a huge impact at the time. I know as I lived through it. The retraction of interpretation published by most of Mr. Wakefield’s co-authors on the 1998 Lancet paper (since fully retracted by the journal), was a big statement that this work was not solid. Of course, Brian Deer would eventually go on to win a U.K. Press Award for his MMR journalism and Mr. Wakefield would eventually be found to have been unethical in his research and struck off the register (lose his medical license).

The embedded version below should go through all three parts in sequence.

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Autism Science Foundation Named as a Top Rated Nonprofit by Great Nonprofits

2 Oct

The Autism Science Foundation funds research related to autism.  They have been named as a “Top-Rated Nonprofit” by Great Nonprofits.  Below is the overview from the announcement website.

Mission:

The Autism Science Foundation supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

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Results:

ASF has awarded over one million dollars in funding to scientists doing autism research since our founding in 2009. We also provide travel awards for autism stakeholders to attend the International Meeting for Autism Research each year.

We launched an awareness campaign to encourage brain tissue donation so scientists can investigate the neural underpinnings of autism spectrum disorders.

ASF advocated successfully for a new medical classification code for autistic wandering, which became possible after the ASF-funded wandering study published in the journal Pediatrics.

ASF board members and staff are frequently sought after by major national media (CNN, Wall Street Journal, Washington Post, USA Today, etc) to comment on autism related issues.

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By Matt Carey

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Let’s Talk Autism – next live Prime Ministerial Debate

26 Apr

I just received this message from Carole Rutherford at Autism in Mind and ask all UK readers to join us in trying to get autism discussed at the final televised debate between the party leaders.

The final Prime Ministerial debate takes place on Thursday night. The final debate is about the economy. It is estimated that there are at least half a million children and adults who have a diagnosis of autism. There are many more who have the condition without the diagnosis. There could be as many as 6 million families in the UK alone who are living with autism.

Autism-In-Mind and Asperger Syndrome Action by Parents want the leaders to talk about autism on Thursday night and we need your help now. We want you to submit the following question onto the BBC ‘Election Question’ form. The question is wrapped around the economy and how the money that is being spent on autism every year is being spent. It is important that we all ask the same question. We want 1000,s of people to ask this question by Thursday Night and if we can achieve this then maybe someone will listen to us and will talk about autism.

Question to submit to the BBC

A recent study by researchers at King’s College London estimated that autism costs the UK economy around £28.2 billion per year, and yet thousands of autistic/Asperger syndrome children and adults do not meet the criteria for any provision or services. Autism/Asperger syndrome requires services from the cradle to the grave. The only money attached to the newly published Autism Strategy will be half a million pounds for increasing awareness and understanding of autism among frontline professionals with nothing for service provision.

In the first debate there seemed to be recognition from all three parties that there is a huge social care agenda to be addressed in the future, but will it include autistic/Asperger syndrome and disabled people and what guarantee can you give that it will include them? How are you going to make sure that EVERY autistic child and adult is not left until crisis point before they are given the provision that they need? Many of us would like to know how much of the £28.2 billion is being spent on crisis management.<?b>

Here is where you post the question – you do have to give your name and where you live. You do not have to add a telephone number if you do not want to. If you do want to add this number 07960875526 this phone will be deactivated after Thursday night.

http://news.bbc.co.uk/1/hi/uk_politics/election_2010/8589502.stm

Here are some facts and figures produced about Autism last year by the National Audit Office – This might help you to understand how important it is for the Leaders to ‘Talk about Autism’ on Thursday night.
http://www.youtube.com/watch?v=eEKMsO9t0pU

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