Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Three)
Kathleen has done it again. Having previously exposed the misrepresentation of David Geier’s academic affiliations in Part One and the misrepresentation of the Geier’s IRB approval in Part Two, we now get the misrepresentation of Precocious Puberty in Childhood (PPC) as something that is “very, very common” and the misrepresentation of a wide variety of “symptoms” as evidence of PCC to insurance companies who probably do not even know that they are actually funding a piece of research, a piece of research, moreover that has no board approval.
Then there is the misrepresentation practised by the parents on themselves as they convince themselves that their children have elevated levels of testosterone that need to be reduced using Lupron. Then they convince themselves that the radical alteration to their child’s mood and behaviour following this major interference with their hormones is some sort of cure for autism.
The most serious misrepresentation, though, is that practised on the children by Mark Geier, a doctor who abuses their trust to mis-diagnose and then mis-treat them. In this he is aided and abetted by close family members, particularly his son David, business partners and lawyers.
Mark and David Geier might need those lawyers if they are ever called to account for all their misrepresentations.
This blog started as an argument against chelation as a therapy for autism. The National Autism Association is a dedicated supporter of chelation therapy. But today I would like to quote one of their press releases in full. The message is so important that I have ignored the temptation to edit out their call for a cure at the bottom.
Rita Shreffler posted this press release on the AUTINET email list. Somehow it never made it onto the NAA website but full marks to NAA and full marks to Rita Shreffler and Wendy Fournier for being the first to sign the petition to end the use of aversives on autistic children.
I would like to think that all in the autism movement, both parents who are seeking a cure and those of us who prefer to celebrate Neurodiversity could unite in opposing the barbaric treatment meted out by the Judge Rotenberg Center. I would like to but sadly if you go to Whose Planet is it Anyway and read this entry
and scroll down to the comments you will encounter a load of bile from Fore Sam, the pseudonym of John Best Jr. Here he is addressing autistic adults who oppose the Judge Rotenberg Center.
If I thought I could have some of you enrolled at JRC, I'd apply for a job pressing the shock button. It might help straighten you out.
If he was just a troll we could ignore him. But John Best Jr is the parent of an autistic child and a Rescue Angel, a member of Generation Rescue whose job it is to visit the parents of autistic children and persuade them to chelate their child.
I hope that NAA publish this press release on their website. I hope they invite Generation Rescue to endorse it. And if GR oblige I sincerely hope that they remove John Best Junior from their list of Rescue Angels. He is not fit to advise parents. He is not fit to be a parent, let alone the parent of an autistic child.
NATIONAL AUTISM ASSOCIATION SPEAKS OUT AGAINST “AVERSIVE THERAPIES” USED ON CHILDREN
“THERE HAS TO BE A BETTER WAY,” SAYS NONPROFIT GROUP
Nixa, MO – In a TimesUnion.com article published last week entitled “Should pain be a part of learning?” writer Rick Carlin touched on a highly controversial collection of aversive therapy methods used on children with neurological disorders such as autism.
Carlin described such methods as “hitting, slapping, pinching, kicking, hurling, using painful or intrusive sprays or inhalants, and withholding sleep, shelter, bedding or bathroom facilities,” and cited facilities such as the Rotenberg Residential Center as utilizing these methods on troubled patients. Also mentioned was electrical shock therapy.
“We can’t allow this to continue,” says Wendy Fournier, President of the National Autism Association. “There has to be a better way of addressing behaviors associated with severe autism and related disorders.”
The national group says regulations need to be in place to prevent aversive therapies. “We’re interested in talking to facilities such as the Rotenberg Center, and are willing to help in any way we can to replace these cruel therapies with something less aversive,” says NAA Executive Director Rita Shreffler. “These children simply cannot be subjected to these methods, and finding a better way should be the priority of these types of treatment centers.”
The article noted new legislation, sponsored by Senator Marty Golden (R-NY), which would ban aversive therapies. “The National Autism Association supports this legislation,” says Fournier. “we’re more than willing to help any political figure ban these inhumane practices.”
To view the article, visit http://timesunion.com/AspStories/story.asp?storyID=482318&category=CAPITOL&BCCode=HOME&newsdate=5/16/2006.
To sign a petition supporting a ban of these methods, click here http://www.PetitionOnline.com/NYs6876/petition.html
For more information about autism, visit www.nationalautism.org.
Think Autism. Think Cure.
Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Two)
This is the latest episode of Kathleen Seidel's unravelling of the Geiers. In episode one we learned that, according to Dr. Allen Goldstein, Chairman of the GWU Department of Biochemistry and Molecular Biology, David Geier's claimed affiliation with the biochemistry department at George Washington University, in an article they submitted to Hormone Research
conveyed a “significant misrepresentation” of Mr. Geier’s position in the field of biochemistry.
Somebody must have pointed out to the Geiers that if they were going to experiment on children with a powerful gonadotropin-releasing hormone (GnRH) agonist like Lupron they really ought to get some board approval for their work. Their problem was that according to Kathleen,
the research described in the article was conducted between November 2004 and November 2005
when they did not have IRB approval. Kathleen tracked down the IRB that was supposed to have approved their work and discovered that it only came into existence in March 2006!
There's more. Please go to Kathleen's Neurodiversity blog to read about the doctor, the doctor's son, the doctor's wife, the doctor's patient's mother, the doctor's business partner, the anti vaccine litigant and the anti vaccine lawyer who make up the IRB that approved the research by the doctor and his son after the event
This fallacious IRB for once merits the explanation, Post hoc ergo propter hoc.
I have berated the Mail in the past for their persistent espousal of Andrew Wakefiel, siezing on the flimsiest of evidence to publish scare stories about MMR and Autism. But credit where credit is due. Today they printed a commentary under the splendid headline
The article is written by Virginia Bovell. Her son is severely autistic. She helped to found the Treehouse School in London which is based on the principles of ABA. She is active within the National Autistic Society and has written an excellent article. You can add your comments to the online edition.
In the same issue, the Mail has published an article on the ethical issues raised by new developmenmts in genetic testing, including the use of sex testing to reduce autism that I referred to in my blog Autism Acceptance or Genetic Testing?
I am an autistic adult and a valid member of society. No one can tell how an autistic child will fare later in life, what they will grow to be. I am an example of a succesful adult (I will be studying for a degree in Autism next year), there are many others like me.
In fairness not every autistic person will end up at University anymore than every "neurotypical" child but even the severity of Autism during childhood is no indicator of how the child will grow into an adult and unlike some conditions, autism is not an invitation to an early grave. No one can tell before birth which child will be a future Prime Minister, or Wayne Rooney, or which will die in a car accident or from a drugs overdose during a life of Crime.
Every child has equal value whatever their future station in life.
I have been trying so hard to write a tribute to Katie McCarron and her grandfather, Mike McCarron. Mike has generously shared pictures of his grandaughter on Not dead yet and invited others to publish them.
I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.
She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.
She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.
There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.
Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.
Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.
I must apologize for the length of this post, please know that I keep each of you in my prayers.
The Sunday Times has a story headlined Doctors want to screen out embryos with autism. There are no genetic tests for autism so doctors at University College Hospital are proposing to screen for male embryos using preimplantation genetic diagnosis (PGD) because boys are four times more likely than girls to be affected by autism.
Joy Delhanty, professor of human genetics at University College London medical school, said couples would undergo the treatment only if autism had inflicted severe suffering on the family.
I find this particularly disturbing. At present PGD is only licenced in the UK for highly heritable, life threatening disorders. The Human Fertilization and Embryology Authority have published a list of such conditions. To extend this to autism when it inflicted severe suffering on the family is at best an unfortunate turn of phrase. At worst it lends credence to the "trainwreck" mentality of those who see autism as an unmitigated disaster that has to be eliminated at all costs. There is already a disturbing trend for parents who kill their autistic children to be seen as unfortunate victims of their child's condition. When Alison Davies jumped to her death with her son Ryan her sister described it as "an act of love." the Times dutifully reported her words under the headline
Mike McCarron, the grandfather of Katie McCarron, a three year old autistic girl who was killed by her mother has had to struggle to to get his granddaughter's story told in the face of media sympathy for the mother. He has challenged parent groups who have tried to exploit Katie's death to argue how terrible life is for the families of autistic people and how we need more services to prevent desperate parents from carrying out future "selfless acts" of murder.
By seeking to offer PGD to parents concerned about autism, Professor Delhanty and her team seem to be confirming that autism is every bit as bad as the diseases that are currently screened for. They are saying, in effect that if you are going to be autistic it may be better if you were never born. This must contribute to the belief that parents who kill their autistic children, and there are many of them, are in some way justified.
According to the Human Genetic Commission report, Making Babies: reproductive decisions and genetic technology PGD costs between 4500 and 7000 pounds sterling.
- Typically a mother has ovarian stimulation to collect 12 eggs.
- In vitro fertilization produces 10 embryos of which 8 may be suitable for biopsy.
- Seven are successfully diagnosed and 2 are normal.
- One is implanted with a 15% to 20% pregnancy rate per reproductive cycle.
So a lot can go wrong. Making Babies also points out that very little is known about the safety of PGD. only about a hundred children have been born this way in the UK. There may be a 1000 worldwide. It says
Long-term follow up of children born following PGD is important if we are to establish that embryo biopsy does not cause subtle damage to children. Follow up research in the UK is currently hampered by confidentiality requirements of the HFE Act. We recommend that the Human Embryology and Fertilisation Act be amended to permit more satisfactory and systematic follow up of all children born following PGD, and that the Medical Research Council should support appropriate research. (page 47)
There is a small risk to the mother of ovarian hyper-stimulation syndrome when eggs are taken for in vitro fertilisation. This may result in hospitalization and in one case (out of 500,000) the mother died. So PGD is not something to be undertaken lightly, as Professor Delhanty says.
Normally we would not consider this unless there were at least two boys affected in the immediate family. We would be reducing the risk of autism. Couples are not going to undertake this lightly when we explain what they are going to need to go through.
I am not sure how much Professor Delhanty knows about autism in addition to her experience with the families who have approached her for PGD. A recent TV broadcast about the Jackson family shows totally different presentations of autism in Luke, Joe and Ben. If you have two autistic sons there is no way of telling what form the autism will take if it is present in a further child. And even if you could tell it would not help. What are you going to do? Implant the Asperger and reject the Kanner embryo? My Asperger son was having such a miserable time at school that he envied a young man with classical autism who was non-verbal and liked to flap because he was happy. But the message I get is that the future happiness of the child is not a factor. Rather, it is the impact on the family of having another autistic child.
I am also concerned about the impact on a family who go through this arduous process. What if they have an autistic daughter? Having gone to such lengths to avoid another autistic child how will the parents react to her? And if she isn't autistic will having a normal little girl to love affect their feelings for her autistic siblings? How will the boys feel if they think that their parents in rejecting autism are rejecting them? Will the parents place all their hopes on their daughter? Will she feel pressured to succeed in all the things her brothers struggle with?
These are questions that I hope are addressed by Professor Delhanty and her team while preparing their application to the Human Fertilisation and Embryology Authority. She stresses that
Couples are not going to undertake this lightly when we explain what they are going to need to go through.
I believe that couples who are so desperate for a normal child that they are willing to accept the risks associated with PGD actually need counselling and support to accept their autistic children before they are offered help to conceive a non-autistc child. Estee Klar's Autism Acceptance Project would be a good place to start.
I have read the news reports concerning the Judge Rotenberg Center (JRC). They fail to convey the full horror of the report by the New York State Education Department (NYSED). the Boston Globe article by Scott Allan probably provides the most balanced report.
Having read through it all I do not know what is more shocking.
- JRC using cruel and unnatural punishments on vulnerable young people with neurological and/or psychological problems.
- New York (among others) sending their vulnerable young people to be tortured at JRC.
- The NYSED inspectors objecting in part because staff at JRC did not have the requisite qualifications to torture vulnerable young people with neurological and/or psychological problems.
- The fact that this is an acceptable form of "treatment."
- That there are parents who defend the JRC.
I shall return to these points in a more detailed post. For now, I just had to say something.
Mark Geier and David Geier are under scrutiny on the Neurodiversity weblog. In the first part of what promises to be a fascinating series of articles we learn that a recent study by the Geiers that was accepted by the journal, Hormone Research contained a significant error.
The online version published ahead of the print version listed David Geier's affiliation as Department of Biochemistry, George Washington University, Washington, D.C., USA. In the academic world that strongly suggests that
Mr. Geier is a member of the faculty at GWU, or a graduate student publishing with a thesis advisor or other faculty member in the same department; and that GWU is the venue at which Mr. Geier’s share of the research took place.
Unfortunately for Mark Geier and David Geier the claimed affiliation with GWU has been described as "fallacious" and a “significant misrepresentation” by Dr. Allen Goldstein, Chairman of the GWU Department of Biochemistry and Molecular Biology. When the editors of Hormone Research where informed of this "significant misrepresentation" of David Geier's academic affiliation they immediately withdrew the paper. This to their credit and is what one would expect of a serious peer reviewed journal.
At this stage it is unclear whether the Geiers acted out of ignorance of academic conventions or, for reasons best known to themselves, chose to ignore those conventions. Either way, it is not the sort of behaviour that inspires confidence in their research. This confidence is crucial because the Geiers are promoting a protocol for the treatment of autism based on their research. The Geiers' research has never been published in a respectable peer reviewed journal and therefore no one else has had the opportunity to replicate their findings. This has not stopped the Geiers from trying to patent their Lupron Protocol. Nor has it stopped them from soliciting for parents to try this untested and unproven "cure" on their children.
Please read the Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part One) and look out for further instalments.
Here is another great video from Teachers TV.
Jacqui Jackson is a single mum who has raised her four boys and 3 girls. All four boys are on the autistic spectrum. This video features Jacqui and three of her four sons, Luke, Joe and Ben. All of them speak honestly about the trials and the joys that autism brings.
The contrast with the pity party on Autism Every Day could not be more marked. Luke has lots of sensory sensitivities. He screamed all the time as a young child. Joe has ADHD as well. Ben did not walk or speak until he was 4. And Jacqui is a mum who supports biomedical interventions. The boys are on the gluten and casein free diet. But Jacqui is not looking for a cure. She wants "autism friendly futures" for her children.
Are you tired of negative messages about autism in the media? Especially video segments in which people talk about autistic people but never talk to them? If so try this.
At Rosehill Special School in Nottingham, pupils have developed levels of creative and imaginative skills not often associated with those on the autistic spectrum, and a Creative Partnership allows students to work on a variety of arts projects.
- See autistic people being creative!
- Hear autistic people speaking for themselves!
- Listen to teachers who admit that their work is challenging the triad!
Artists supported by Creative partnerships come into the school with no preconceptions and challenge the pupils and the staff and it works. It works in my school as well. We are also part of the Creative Partnerships project. In my school the partnership is between students, many of whom are autistic, and professional musicians. Staff work alongside students and we perform together. We are not on Teachers TV … yet.
This is a 30 minute streaming video or a 70 meg download. So broadband users only I am afraid.