Citizen Autistic screening October 19 in Redwood City, California

11 Oct

A documentary, Citizen Autistic, will be shown on October 19th in Redwood City, California. The event page at BrownPaperTickets.com can be found here: Citizen Autistic Screening in Redwood City, October 19.

Citizen Autistic Trailer from William Davenport on Vimeo.

Here is a description of the event:

The documentary Citizen Autistic will be shown on October 19, 2014, 5-7 PM, at the Unitarian Universalist Fellowship of Redwood City, at 2124 Brewster Avenue, Redwood City, CA 94062.

Director William Davenport will be present, as will some of the documentary’s interviewees. Ticket proceeds will benefit the Autistic Self-Advocacy Network, http://www.autisticadvocacy.org.


By Matt Carey

ABC News covers Brian Hooker’s study: Hooker “manipulated the data and manipulated the media in a very savvy and sophisticated way.”

10 Oct

A recent ABC story (How a Now-Retracted Autism Study Went Viral — Again) discussed Brian Hooker’s flawed and retracted study.  Here are the first few paragraphs:

An autism study that was slammed by experts and retracted this week by its publisher is still alive and well on the Internet, thanks to what critics are calling a perfect storm of lax publishing standards.

Experts say the lone study author played fast and loose with statistics to show a link between autism and the MMR vaccine for measles, mumps and rubella, some experts going as far as saying that the author deliberately did this, but the dubious results took off online anyway, quickly going viral.

“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.

Good to see this coming from outside the blogOsphere. Let’s pull one sentence out for emphasis, shall we?

She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”

When people ask about data manipulation and the MMR/Autism story, there it is.

The story continues at ABC: How a Now-Retracted Autism Study Went Viral — Again. Included in the story is a CDC statement that I’ve seen before but warrants quoting here.

Centers for Disease Control and Prevention statement regarding Brian Hooker’s reanalysis of its 2004 study Aug. 27, 2014

There was no cover up. The study did not find any statistically significant associations between age at MMR vaccination and autism. In the CDC paper, similar proportions of case (children with autism) and control children (no autism) had been vaccinated before 18 months or before 24 months. While slightly more children with autism (93.4%) than children without autism (90.6%) were vaccinated between 24 and 36 months, this was most likely a result of immunization requirements for preschool special education program attendance in children with autism.

As this topic was so sensitive and complex, the CDC study published in Pediatrics in February 2004 underwent clearance at CDC, the usual process of internal review for scientific accuracy that all CDC papers undergo. In addition, before submission to the journal, the manuscript was reviewed by five experts outside of CDC and an independent CDC statistician (see acknowledgements section of the paper for specific names). Finally, all reputable journals undergo peer-review of all submitted papers before final publication.

The 2004 CDC study was designed as a case-control study. This means, children with autism (cases) were specifically identified, and children without autism (controls) were identified to be similar to the children with autism in other respects. When data are collected in a specific way for a specific type of statistical analysis (a case-control study in this instance), using those data in a different type of analysis can produce confusing results. Because the methods in Dr. Hooker’s reanalysis were not described in detail, it is hard to speculate why his results differed from CDC’s.

Since the 2004 Pediatrics paper, CDC has conducted additional studies of vaccines and autism. In 2004 the Institute of Medicine reviewed published and unpublished findings from the US and other countries and concluded that there was no association between MMR vaccination and autism. In 2011, another IOM committee reviewed additional research, and once again found that evidence favored rejection of this association.


By Matt Carey

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.

Matt Carey

Mother who tried to kill her autistic daughter sentenced: 10 to 22 years

9 Oct

Isabelle Stapleton is an autistic teenager with extraordinary needs. She is also a teenager who will grow up without her mother, as her mother has been sentenced to 10 to 22 years for first degree child abuse. The mother was originally charged with murder, but she pled to the lesser child abuse charge. Details can be found at Mom who tried to kill daughter gets 10-22 years and Kelli Stapleton, who tried to kill autistic daughter, sentenced to minimum 10 years prison.

Here’s a quote from the prosecutor:

“My office strives to protect our most vulnerable victims,” she said. “In this case, Isabelle’s autism did not mean she deserved less protection. Her life has value, and she deserves justice for the attempt on her life. The right outcome was achieved in this case. The defendant was sentenced as recommended by our state’s sentencing guidelines, and justice was obtained for Isabelle.”

It is difficult to find words to discuss cases of murder and for me especially attempted murder of the disabled. As the parent of an autistic kid with very great challenges, this story affects me personally. The disabled are at a great risk of abuse–including from their caregivers. We can not excuse or diminish what Isabelle’s mother tried to do. What she did do. We do this because it is right, not because of loyalty to one group over another as many have described this.

Online one can find very active discussions about this case. Mrs. Stapleton’s friends have jumped forward to defend her. Others, possibly after seen “Dr. Phil” cover this story are also out there. Lot’s of people downplaying what this was–attempted murder. People using Isabelle’s disability to diminish the acts of her mother. People who see loyalty first not to the parents, but to the guilty. One can now find people attacking the father. Everyone is at fault…except the mother. The person who tried to kill Isabelle.

If loyalty is to come into play in this discussion, our first loyalty as parents is not to our fellow parents. Just as Isabelle’s mother’s first loyalty was to the protection of her daughter, ours is to the protection of our children and autistics like our children.

And for those who see great sympathy for fellow parents, consider this. How would you feel if your spouse killed or tried to kill you child? You want to feel loyalty to a parent, Isabelle’s father now has to raise a family alone. Isabelle’s siblings now have to grow up without a mother. It isn’t the court who took their mother away. It’s the mother who left them by her actions.

For those who think that by accepting that justice was served when Isabelle’s mother was sentenced we diminish the challenges of the mother: you are wrong. We can have the discussion of how difficult it is to be a parent. How difficult it is to be the parent of a disabled child. That conversation must start with the challenges and needs of the child. And what greater responsibility do we have than to protect our children’s lives?


By Matt Carey

Sentencing expected for mother who attempted to murder her autistic daughter

7 Oct

Isabelle Stapleton is an autistic teenager who survived an attempted murder by her mother.  The mother has pled guilty to a lesser charge and is expected to be sentenced on Tuesday, reports SeattlePi.com

Sentence expected for mother of autistic teen

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

5 Oct BadStudyRetracted

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


By Matt Carey

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

5 Oct Result_of_Wakefields_Scare

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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