Dr. Story Landis: Autism not a multi-symptom disease but a money making scheme?
Managing Editor's Note: Click on the photo to enlarge it. The PDF of the full note is clearer (HERE) and includes a bizarre comparison to the cochlear implant community and homosexuality. There's an IACC meeting today, and you can CALL IN: See HERE.)
By Katie Wright
The way the Reagan administration responded to AIDS in 1981 is looking pretty good compared with how some NIH bureaucrats are now reacting to the autism epidemic.
Never before has a community of advocates and suffering kids been treated with such contemptuous disrespect as the NIH and IACC treats families affected by autism.
When we last left off with the IACC story, we learned that according to Dr. Yvette Janvier, GI diseases and immune disorders do NOT exist amongst the ASD population. In fact, Janvier was “offended” by the mere suggestion. (Click HERE to read about Dr. Janvier.)
When the subject of adverse vaccine reactions and vaccine court arose, Dr. Landis and Dr. Matt State rolled their eyes and furiously passed notes with each other each. No, this isn’t 5th grade; it is the Interagency Autism Committee, sponsored by the federal government.
After the meeting adjourned a parent in the audience noticed a bunch of notes on the floor near where Lyn, Story and Matt had been seated. You will not believe what Story’s note said. Well, you will believe it but you will be appalled. CLICK HERE TO READ THE NOTE.
“I wonder if Lyn Redwood is pushing autism as a multi-symptom disorder in order to feed into vaccine injury awards.”
I must be doing something really, really wrong because autism has nearly bankrupted my family. Where is Christian’s big award? Where did I go wrong? Maybe Story can explain how autism is really a get rich quick scheme? Like fools, my husband and I have paid out hundreds of thousands in therapy, medical tests, doctor consults, etc. If only I had known that my son’s regressive autism = big injury award and Easy Street!
Seriously, probably the second most powerful member of IACC has attributed the medical symptoms of autism to greedy parents looking for an easy payday. All that GI, autoimmune and regression research we have been pushing is merely a means to cash in? Those years of bloody diarrhea, febrile seizures, chronic autoimmune dysfunction, and loss of fine and gross motor skills were all part of our plan to win some money in vaccine court?
Dr. Story Landis needs to resign from IACC. How could Landis imply that families are “trying to make” autism into a total body disease in order “to feed into vaccine injury awards.” Dr. Landis, I think I speak for most parents with regressive kids, when I say; we didn’t try to make autism into a total body disease, it just is. In fact, we spend almost every waking moment trying to make our kids healthy again. How dare you suggest that any amount of money could ever begin to make up for the torment and pain our children have endured.
Tony, maybe you don't see a problem because you are stereotyping everyone in what you call the "anti-vax movement" -- and your stereotype is a distorted one. Lyn Redwood is a person of great integrity, compassion, and intelligence who has been working incredibly hard for years to move our government and mainstream medicine forward on the issues of understanding the causes of autism for the sake of prevention and treatment. Autism IS a multisystem disorder; that is not something that is being pushed as part of some kind of calculated agenda.
Posted by: Twyla | December 13, 2009 at 12:10 PM
Wow...I cant believe the idiocy of those people who wrote the notes, then they just drop them and leave? Wow.
But am I surprised? No, not really. Because having worked in government at one time, I realize that like many organizations, the problems are at the "top". In essence, in these kinds of goverment sectors, leadership can seldom be described as "the cream rising to the top"...its more like "sh*t floats"! Pardon my french. LOL
Its time that parents of autistic kids start demanding answers. I am glad you brought all this to light.
Posted by: Kirsten | December 13, 2009 at 11:24 AM
I don't really see a problem with her speculation regarding the motives of some people in the anti-vax movement. It is a reasonable query that should be asked. After all, the same accusation regarding "big pharma" is made by people on the other side.
Posted by: Tony | October 23, 2009 at 03:21 PM
amber it isof quite poerful and severe anxiety producing fr me too because the energy around me can be of too much and it is of like my being picks up all the emotional states of the people in the room, it is of like being hyper aware of all things around you and not know what to do with it. I to be of can be of so consumed with the sad of sufferings that cant cope of life because feel as if in constant overload from all of this. I to be of so very very hyper reactive and responsive to almost all things to this life and it can create a emotional break down with in me because cant have the words to tell others of what I to be of feeling when it happens, there is of no words for it.
Posted by: sondra | October 18, 2009 at 11:37 AM
Another Thank You to Sondra for your thoughts and words. They are invaluable to us as parents and caregivers. It's staggering to realize what you go through everyday just trying to navigate this world.
"while cant read of people can sense much things aobut things that cant explain how but just know things due to that energy or because hyper sensitive to the emotional states of people around me even if not knwo what do with it or interpret it by emotional name."
My youngest son has this ability, too. Unfortunately, it is a source of anxiety for him. My husband and I hope he will learn to manage it as he grows.
Posted by: Amber | October 18, 2009 at 10:53 AM
Thanks for your kind words. I always have hope for Megan's recovery but she is so affected in a multi-system way. I have hope that we will have more answers and treatments for those who are so very impaired.
Again, thanks for talking about your physical,emotional and sensory issues. It is helpful for me as I can get a sense of how my daughter feels and why she may respond the way she does.
I am so sorry that you have such intense illness that has been denied for so long. I am relieved that you have found Dr. Natowicz and I hope you find answers and relief from your pains. Your description here:
"adreneline surges one gets if they are of to feel as if htey will fall or get of a sudden fear much strong to them , for self it feels like electrical surging in my arms that radiate to my hands and center mostly to my wrist area and finers."
sounds absolutely horrible and it makes me think that my daughter has something similar based on her behaviors. She bites her wrist when agitated (or is she so agitated that biting her wrist relieves the pain?)and I have always wondered why in that area. Other children also bite the wrist so it is not just Megan. She also is bothered by her knuckles, and some will appear swollen, and then she rubs them, bites them until they have callouses. Her newest thing is to take rubber bands and string them around her finger to almost relieve the pain buy cutting off circulation. It is of course, not a safe thing but is showing me that this is a progressive situation. Some thoughts I had were fibrin - connective tissue, possible Strep in the joints (or something similar- arthritis),or some type of unknown inflammatory condition.
I will continue to have hope that both you and Megan, and all of the people suffering with autism will get answers and a cure to the pains and debilitating conditions that you have to deal with every day. We are fighting for all of you. This has gone on too long and your sense of "humanity and right" is exactly what has been lacking by too many who have let you and so many suffer with the "It's all in your head" mentality.
Posted by: Teresa Conrick | October 18, 2009 at 10:48 AM
Kathy Blanco you list has much of the same sorts of health issues I to had over my life time. I to much so like of the data references of research or articles on the various health issues.
much of the health people of me often tried of to make of me think it was of all to my head too. but now seeing of a spcialist named of Marvin Natowicz a world renown specialist who is of investigating of my health and is of validating of it. he is of testing many things but looking at mitochondrial disease as one of the things he feels is of a possible dx for me. it is of somethings that I to be of more aware of as being of connected to autism in some fashions. the one test shows of my pyruvate acid being of high so it was of noted as well as slightly high blood sugar and phosphorous. He to feels muc of the pains I to experience is of not a true fibromyalga but a neurapathy but he is of more concerned as to what is of creating the neurapathy? the body of me is of almost always in constant pains or ill in some fashions and often gets expressed in behavioral outburst of negative actions of agitation, self aggression and shut downs and or so much depressed that want to end of the life of self at times. I to have to fight much hard to not act on that when it isof consuming of me.
even this night fear the flu is of coming to me as the tummy of me is of saying sick.... and the nerves to my arms are of tingling and with that tingling is of a surge of hot flashes which makes the tingling worse and it is of making me just want to sleep. this tingling is of not part of a flu but is of part of my health issues lately and is of making me so agitated and annoyed of it. it is oflike teh adreneline surges one gets if they are of to feel as if htey will fall or get of a sudden fear much strong to them , for self it feels like electrical surging in my arms that radiate to my hands and center mostly to my wrist area and finers. I to hate of htis sick and want to be of healthy ans well but lack how to do that so have to trust of the grwn ups around me to do that.
in all true my psycholosit has shared in all honest to me of my social/emotional estimated age is of average maybe the range of a child 10 years and younger and not ashamed of that , as lack that true emotion for self but do get fustrated because this i sof why I to lack how to best care for self. yet other parts of me can be of smart, such as how I to see of hte world, and how I to try hard to express self and communicate my thinking and words. I to ahve a strong sense of humanity and right. And like Tony Attwood shared to that webradio I to be of like one born to a sixth sense. while cant read of people can sense much things aobut things that cant explain how but just know things due to that energy or because hyper sensitive to the emotional states of people around me even if not knwo what do with it or interpret it by emotional name.
Posted by: sondra | October 17, 2009 at 10:02 PM
Bless you Sondra! You left such a powerful comment but my favorite part is this :
"so the real issues of to correct the health issues, cure that part of us and if in the doing a recovery from autism happens then one can rejoice if not one needs to learn to rejoice in the human loved one that exists and learn to knwo then as they are.... that does not mean do nothing it means keep loving them by doing all one can do to improve quality of life..."
PERFECTLY said Sondra.
I've told many people, with regard to my 7 year old daughter's recovery, we treated her medical issues and her autism disappeared. Whether her autism disappeared or not, her underlying medical issues demanded treatment. Every person deserves treatment for medical issues...and in our case, praise God, that as her health improved so did her function.
Posted by: Pamela | October 17, 2009 at 08:32 PM
Sorry Teresa about no recovery. I am glad though that someone as kind and intelligent as you are working for all of children to make it better.
Posted by: Benedetta | October 17, 2009 at 04:22 PM
I am a mom with a 5 year old child with autism. Thanks to DAN! and their biomed approaches, he is much better, though far from cured. About a decade ago I worked for an NIH in an administrative office directly under Story Landis. From my experience, I've found NIH to be a sinkhole of tax dollars -- their "goals" are to do "research" but curing diseases is secondary (unless there's a new drug to sell -- you know NIH funds a lot of research done by the big pharmaceutical companies). Anyway, my coworker pointed out to me one day "have you noticed, when Dr. Landis uses the bathroom, she doesn't wash her hands? I've seen it over and over, she just walks out of the stall and exits the bathroom." Well, unfortunately, I had to see it for myself -- ughh! But why would someone of such a high rank not do the basics of what we're all told about disease prevention? It couldn't be ignorance! Arrogance? Bad judgment? With people like Story Landis leading the way, I have no hope for any real progress from the IACC.
Posted by: Liza Radley | October 17, 2009 at 03:15 PM
Teresa, I agree with you. Sondra is a great blessing for Age of Autism. As are the other adults with autism who can help us to understand and appreciate what our kids are feeling. My Mia is probably a lot like your Megan. Biomedical has helped her tremendously - but the love her Dad and I have for her and the care we give her must be equal in terms of what makes her a smiling, affectionate young lady.
Posted by: Stagmom | October 17, 2009 at 07:36 AM
I always appreciate your words and insight. When you talk about your past and what you have been through, it is profoundly stark and tears me up.
"many will gain in skills. so the real issues of to correct the health issues, cure that part of us and if in the doing a recovery from autism happens then one can rejoice if not one needs to learn to rejoice in the human loved one that exists and learn to knwo then as they are.... that does not mean do nothing it means keep loving them by doing all one can do to improve quality of life..."
...is my life with my daughter. She is not recovered, not close, but the quality of her life has vastly improved due to focusing on the health of her body as well as letting her know how much she is loved and what a wonderful person she is. She has no words but I know she knows all of this.
Posted by: Teresa Conrick | October 16, 2009 at 09:56 PM
roger while i to not follow the ND fashions or mind set I to not like to hear words about adults with autism in a negative fashions, I to have of autism. not all with autism think alike. as for self do see of much multi facet issues to autism, I to need of a cure to all the medical parts of me that are of commonly seem among many with autism. i to been of to suffer health wise all of life , spend the life of me in an institution because of lack of care to me as a whole person. anyways also about autism speaks will admit to liking some parts of their work but do feel frustrated over much in regards to AS but have same issues to much other things in regards to autism too. While I to be of considered HFA now as a adult , did not always be as such of would not have had a need to be of institutionalized for the SIB and rages and tears. much of my reports of me even to ages of my 20s give reference to my language , poverty of speech as they called of it. and much reference to my lack of eye contact, my lack of any attempt to interact with others even within a room full of others, and odd repetative body movements, rocking, pacing, hand twisting, finger flicking sort of behavior so no was not always HFA. but many who are of now as adults may or may not have been as childrens either. but regardless of level of fuctioing the issues are of the fact that no one knows where their child will be in 20 years as far as functioning. many will gain in skills. so the real issues of to correct the health issues, cure that part of us and if in the doing a recovery from autism happens then one can rejoice if not one needs to learn to rejoice in the human loved one that exists and learn to knwo then as they are.... that does not mean do nothing it means keep loving them by doing all one can do to improve quality of life...
Posted by: sondra | October 16, 2009 at 06:47 PM
The late Bernard Rimland, I have heard, referred to the Combating Autism Act as the 'Pretending to Combat Autism Act'.
Posted by: Robin Nemeth | October 16, 2009 at 06:04 PM
Really Dr. Landis? How could we possibly? With the statute of limitations being three years, my God, by the time parents get a chance to come up for air from trying to help our kids, we couldn't sue if we wanted to!
Posted by: AnaB | October 16, 2009 at 12:57 PM
I heart Natasa and all the hyperinformed parents who post here.
Posted by: Garbo | October 16, 2009 at 12:40 PM
If there was ever a place to pool our limited financial resources, it is into a "change the public opinion campaign". The IACC, NIH, CDC, AAP.....none of them are going to listen to reason and agree with our perspective that these kids are sick and that vaccines are in part (if not totally) responsible for causing this autism epidemic. Can't we as a community fight back by creating a clever propaganda movement to sway public opinion in the direction of the truth? This fiasco has gone on too long, too many parents have had to endure this kind of ridicule and abuse and too many children are developing autism and not getting the proper treatment....all because of the closed mindedness of these officials who are supposed to be serving the people!
Posted by: Maureen H. McDonnell, RN | October 16, 2009 at 12:09 PM
Ah, I see. So my three year old potty-trained son's explosive diarrhea, which began just weeks after his first MMR/Varicella vaccines and caused him to have multiple accidents per day in his pants, is really just comorbid to the autism that he developed just days after the same vaccines. This makes me feel so much better and I'm sure my son will be relieved when I explain it to him, provided I can get him to understand and stop the constant hand flapping and jumping that developed comorbid to the autism, again - two days after his MMR/Varicella.
Posted by: Bonnie | October 16, 2009 at 10:37 AM
Lets see, things wrong with my kids who have the label of autism
1. Grand mal seizures/Landeau Kleffner
2. Mitochondrial disorder
3. Thyroid disease
4. Gut inflammation/celiac/IBD/Sloopy stools
5. Lyme disease, mycoplasma infections
6. Dytonic like movements
7. Eye problems
8. Immune disturbance
11. Muscle wasting/casechia
12. Sleep Disorder/Apnea
13. Cerebellum atrophy/Autonomic dysfunction
I can go on...but you get the drift...
Posted by: Kathy Blanco | October 16, 2009 at 10:00 AM
Below is a partial summary the recent research into abnormal biological markers in people with autism, organized under nine headings: Neurological abnormalities; Abnormality of the immune function and chronic inflammation; Gastronintestinal problems; Oxidative stress; Mitochondrial dysfunction Neurotransmitter abnormalities; Hormonal abnormalities; Auditory, visual, tactile and oral sensory processing disorders and motor difficulties; Reduced cerebral blood flow and cerebral edema.
The numbers in brackets are PubMed references for each study - the articles can be accessed through links on www.autismcalciumchannelopathy.com
Neurological abnormalities in autism:
Various neuropathological and MRI studies have pointed to the following neurological abnormalities in autism:
· significantly elevated calcium levels in autistic brains compared to controls, followed by elevations of mitochondrial aspartate/glutamate carrier rates and mitochondrial metabolism rates (18607376) also see Mitochondrial dysfunction below
· abnormal neuronal migration in both brainstem and cerebellum and disorganised columns of the cerebral cortex.
· significant reduction in granular and Purkinje cell numbers, often accompanied by gliosis (proliferation of astrocytes in damaged areas of the brain).
· marked active/ongoing neuroglial activation and neuroinflammation (see Immunity and Inflammation below).
· abnormalities of cortical development has been observed in some cases, including areas of increased cortical thickness, high neuronal density, neuronal disorganization and poor differention of neurons.
· abnormalities in brain size and volume, recently linked to increased tissue water content in brain matter
· reduced blood flow to parts of the brain
· abnormalities in the size and densitiy of neurons and less dendritic branching, with increased neuron density and shorter connecting fibers, pointing to delays in neuronal maturation.
· autoantibodies to brain proteins, notably to myelin basic protein, neuron-axon filament protein and glial fibrillary acidic protein (see Immunity/Inflammation).
(15546155, 18435417, 15749244, 9619192, 18607376> , 9758336, 16819561, 14519452, 16214373, 6924017)
Abnormal immune function and chronic inflammation in autism
Results of numerous studies point to an abnormality of the immune function in autism, as well as active, ongoing inflammation in the GI tract, the brain and the cerebrospinal fluid (CSF).
A recent study by Vargas et al (15546155) investigated the presence of immune activation in postmortem brain specimens and CFS from subjects with autism. The authors found active neuroinflammation in multiple areas of the brain, for example in the cerebral cortex and white matter, and in the cerebellum. A marked migroglial and astroglial activation was also found, as well as the presence of an altered cytokine pattern, with macrophage chemoattractant protein (MCP)-1 and tumor growth factor-beta1 (TGF-beta1) being the most prevalent cytokines. There was also an accumulation of macrophages and monocytes, and a marked absence of lymphocytes and antibodies, pointing toward an innate neuroimmune activation with the absence of adaptive immune system/T cell activation in the brain. In addition, an enhanced proinflammatory cytokine profile was observed in the CSF, including once more a marked increase in MCP-1. These observations resemble findings in other neurological disorders in which elevations in cytokine levels is associated with the pathogenesis of neuroinflammation, neurotoxicity and neuronal injury and subsequent behavioural and cognitive impairments, for example HIV-associated dementia and multiple sclerosis (15288500, 11282546, 16875710, 9852582). Animal experiments illustrate that, during early pre and postnatal development, inflammatory cytokine challenge can induce various psychological, behavioral and cognitive impairments (17804539, 16147952, 9852582). At the same time the expression of many cytokines, including MCP-1, in neurons and glial cells seems to be upregulated by increased intracellular calcium triggered by membrane depolarisation (11102468, 10943723).
Another investigation into inflammatory markers in the brain tissue of patients with autisms revealed significantly increased levels of several proinflammatory cytokines (TNF-alpha, IL-6 and GM-CSF, IFN-gamma, IL-8). The Th1/Th2 ratio was also significantly increased in ASD patients, suggesting that localized brain inflammation and autoimmune disorder may be involved in the pathogenesis of ASD (19157572).
Various serological findings further confirm the presence of immune system dysregulation and active inflammation in autism - raised levels of proinflammatory cytokines have often been observed in blood of patients with autism, with significant increases of IFN-gamma, IL-6 and TNF-alpha. These results are followed by findings of decreased peripheral lymphocyte numbers, incomplete or partial T cell activation following stimulation, decreased NK cells activity, dysregulated apoptosis mechanisms, imbalances of serum immunoglobulin levels, increased numbers of monocytes and abnormal T helper cell (Th1/Th2) ratio, with a Th2 predominance, and without the compensatory increase in the regulatory cytokine IL-10 (16698940, 16360218). It is of interest to note that, following increased levels of TGF-beta1 in brain specimen as observed by Vargas et al, this cytokine was found to be significantly lower in the blood of adult patients with autism compared to controls (17030376).
Another relevant observation is the elevation of cerebrospinal fluid levels of TNF-alpha compared to its serum levels in subjects with autism. The observed ratio of 53.7:1 is significantly higher than the elevations reported for other pathological states for which cerebrospinal fluid and serum tumor necrosis factor-alpha levels have been simultaneously measured (17560496).
It has been suggested that prenatal viral infection might dysregulate fetal immune system, resulting in viral tolerance in autism (139400). Studies showing altered T-cell subsets raised suspicions about possibile autoimmune aspects of autism and several studies pointed to association of the risk of autism to immune genes located in the human leukocyte antigen (HLA) (16720216, 15694999). The immune system uses the HLAs to differentiate self cells and non-self cells and some of them are linked with higher risk of autoimmune disorders. Animal studies show that behavioural changes follow onset of autoimmune disease and can be reversed through immune-suppressive treatments (8559794), and although various autoantibodies to brain antigens have been observed in autism, the results of those studies are often conflicting. In addition to the inconsistent findings the question has been raised as to whether those autoantibodies would be pathogenic contributors or mere consequences of the the disorder. Of note in this context is the finding pointing to possible association of virus serology and brain autoantibodies in autism (9756729). One study found that children with autism had a significantly higher percent seropositivity of anti-nuclear antibodies. Anti-nuclear antibody seropositivity was significantly higher in autistic children with a family history of autoimmunity than those without such history, and also had significant positive associations with disease severity, mental retardation and electroencephalogram abnormalities (19135624). Autistic children were found to have significantly higher serum anti-myelin-associated glycoprotein antibodies than healthy children. Family history of autoimmunity in autistic children was significantly higher than controls. Anti-myelin-associated glycoprotein serum levels were significantly higher in autistic children with than those without such history (19073846).
A study looking at several markers of concomitant autoimmunity and immune tolerance found highly elevated circulating IgA and IgG autoantibodies to casein and gluten dietary proteins in autism sample compared to controls. Circulating anti-measles, anti-mumps and anti-rubella IgG were positive in only 50%, 73.3% and 53.3% of autistic children previously immunised by MMR, as compared to 100% positivity in the control group. Anti-cytomegalovirus CMV IgG was also investigated and was positive in 43.3% of the autistic children as compared to 7% in the control group (17974154).
Gastrointestinal dysfunction in autism
Individuals with autistic spectrum disorders tend to suffer from various, sometimes severe gastrointestinal problems. Children with ASD have a much higher rate of gastrointestinal (GI) symptoms when compared with children of either typical development or another developmental disorder. The most frequent complaints are chronic constipation and/or diarrhea (frequently accompanied by indigested or partially digested food in stools), gaseousness, and abdominal discomfort and distension (14523189). Decreased sulfation capacity of the liver, pathologic intestinal permeability, increased secretory response to intravenous secretin injection, and decreased digestive enzyme activities have been reported in many children with autism. Treatment of digestive problems is reported to have positive effects on autistic behaviour in some individuals (8888921, 12010627, 1176974).
Defects of innate immune responses in ASD children with GI problems have been detected, and intestinal pathology, including ileocolonic lymphoid nodular hyperplasia (LNH) and mucosal inflammation, with enhanced pro-inflammatory cytokine production, have been noted in various studies. A majority of the children were shown to have chronic swelling of the lymphoid tissue lining the intestines, particularly near where the small and large intestines meet, and chronic inflammation of the large intestine. There is a consistent profile of CD3+ lymphocyte cytokines in the small and large intestinal mucosa of these ASD children, involving increased pro-inflammatory and decreased regulatory activities (16494951, 15741748, 11007230, 15622451). The mucosal immunopathology in children with autism is reported to be suggestive of autoimmune lesion and is apparently distinct from other inflammatory bowel diseases (11986981, 15031638)). See also Immune and Inflammation.
One study examining histologic findings in children with autism revealed high incidence of grade I or II reflux esophagitis, chronic gastritis and chronic duodenitis. The number of Paneth cells in the duodenal crypts was significantly elevated in autistic children compared to controls. Low intestinal carbohydrate digestive enzyme activity was reported in over half of the children with autism, although there was no abnormality found in pancreatic function. Seventy-five percent of the autistic children had an increased pancreatico-biliary fluid output after intravenous secretin administration, suggesting an upregulation of secretin receptors in the pancreas and liver (10547242).
There are also reports of prominent epithelium damage (11241044), and of significant alterations in the upper and lower intestinal flora of children with autism. One striking finding was complete absence of non-spore-forming anaerobes and microaerophilic bacteria from control children and significant numbers of such bacteria from children with autism. The faecal flora of ASD patients was found to contain a higher incidence of the Clostridium histolyticum group of bacteria than that of healthy children (1552850, 12173102, 16157555).
Oxidative stress in autism
Oxidative stress is defined as an imbalance between pro-oxidants and anti-oxidants, resulting in damage to cell by reactive oxygen species (ROS). During times of environmental stress ROS levels can increase dramatically which can result in significant damage to cell structures, especially in absence of anti-oxidant defences, such as the enzymes superoxide dismutase, catalase, glutathione peroxidase and glutathione reductase or antioxidant vitamins A, C and E and polyphenol antioxidants. There is mounting evidence that abnormalities of ROS and nitric oxide (NO) may underlie a wide range of neuropsychiatric disorders. Abnormal methionine metabolism, high levels of homocysteine and oxidative stress are also generally associated with neuropsychiatric disorders. NO signalling has been implicated in a number of physiological functions such as noradrenaline and dopamine releases. It is thought to have neuroprotective effects at low to moderate concentrations, but excessive NO production can cause oxidative stress to neurons thus impairing their function.
Studies comparing the level of homocysteine and other biomarkers in children with autism to controls showed that in children with autism there were highter levels of homocysteine, which was negatively correlated with glutathione peroxidase activity, low human paraoxonase 1 arylesterase activity, suboptimal levels of vitamin B 12 (16297937, 12445495) and increased levels of NO (12691871, 14960298).
Lipid peroxidation was found to be elevated in autism indicating increased oxidative stress. Moderate to dramatic increases in isoprostane levels (16081262, 16908745), decreased levels of phosphatidylethanolamine and increased levels phosphatidylserine (16766163) were observed in children with autism as compared to controls. Levels of major antioxidant proteins transferrin (iron-binding protein) and ceruloplasmin (copper-binding protein) were found to be significantly reduced in sera of autistic children. A strong correlation was observed between reduced levels of these proteins and loss of previously acquired language skills (15363659).
Another study measured levels of metabolites in methionine pathways in autistic children and found that plasma methionine and the ratio of S-adenosylmethionine (SAM) to S-adenosyl-homocysteine (SAH), an indicator of methylation capacity, were significantly decreased in the autistic children relative to controls. In addition, plasma levels of cysteine, glutathione, and the ratio of reduced to oxidized glutathione, indicative of antioxidant capacity and redox homeostasis, were significantly decreased in autistic group. The same study evaluated common polymorphic variants known to modulate these metabolic pathways in 360 autistic children and 205 controls. Differences in allele frequency and/or significant gene-gene interactions were found for relevant genes encoding the reduced folate carrier (RFC 80G), transcobalamin II (TCN2 776G), catechol- O-methyltransferase (COMT 472G), methylenetetrahydrofolate reductase (MTHFR 677C and 1298A), and glutathione-S-transferase (GST M1) (16917939).
Oxidative damage in autism is also associated with altered expression of brain neurotrophins critical for normal brain growth and differentiation. An increase in 3-nitrotyrosine (3-NT), a marker of oxidative stress damage to proteins in autistic cerebella has been reported. Altered levels of brain NT-3 are likely to contribute to autistic pathology not only by affecting brain axonal targeting and synapse formation but also by further exacerbating oxidative stress and possibly contributing to Purkinje cell abnormalities (19357934).
A study looking into cellular and mitochondrial glutathione redox imbalance in lymphoblastoid cells derived from children with autism found that, compared to controls, autism LCLs exhibit a reduced glutathione reserve capacity in both cytosol and mitochondria that may compromise antioxidant defense and detoxification capacity under prooxidant conditions (19307255).
Mitochondrial dysfunction in autism
Mitochondrial dysfunction with defects in oxidative phosphorylation has been suspected in autism and several recent findings that show abnormalities in mitochondrial enzyme activities that support hypothesis. Postmortem examination of autistic brains revealed significantly elevated calcium levels in autistic brains compared to controls, followed by elevations of mitochondrial aspartate/glutamate carrier rates and mitochondrial metabolism and oxydation rates (18607376, also see Brain and Oxidative Stress sections above).
When compared to controls autistic patients show significantly lower carnitine levels, followed by elevated levels of lactate, aspartate aminotransferase, creatine kinase and significantly elevated levels of alanine and ammonia (16566887, 15739723, 15679182). A pilot study investigating brain high energy phosphate and membrane phospholipid metabolism in individuals with autism found decreased levels of phosphocreatine and esterified ends (alpha ATP + alpha ADP + dinucleotides + diphosphosugars) compared to the controls. When the metabolite levels were compared with neuropsychologic and language test scores, a common pattern of correlations was observed across measures in the autistic group, wherein as test performance declined, levels of high energy phosphate compounds and of membrane building blocks decreased, and levels of membrane breakdown products increased. The authors concluded that the results of the study provided tentative evidence of alterations in brain energy and phospholipid metabolism in autism that correlate with the level of neuropsychologic and language deficits (8373914). This was further confirmed by another study finding the impairment of energy metabolism in autistic patients which could be correlated to the oxidative stress (19376103).
Also see above - Oxidative Stress
Neurotransmitter abnormalities in autism
Abnormalities in neurotransmitter systems have frequently been recorded in autism. Clinical observations include both elevated and lowered levels of various neurotransmitters compared to controls, including alterations in monoamine metabolism [3654486, 2653386, 3215884], neurotransmitter peptides [9018016, 9315980], with considerably raised levels of beta-endorphin (for vasopressin/oxytocin see Hormones) and altered activities of cholinergic receptors, with binding of muscarinic M(1) receptor being up to 30% and that of nicotinic receptors being 65%-73% lower in the autistic group compared to controls . Postmortem brain examination noted abnormalities of the glutamate neurotransmitter system in autism, with specific abnormalities in the AMPA-type glutamate receptors and glutamate transporters in the cerebellum . Expression of several types of GABA receptors is altered in brains of subjects with autism, with levels being significantly reduced in autism compared to controls [18821008, 19002745].
Dysregulations of serotonergic systems in particular have been documented, such as abnormalities in brain serotonin sythesis, with significant reductions in synthesis capacity compared to controls [10072042, 9382481], while at the same time plasma levels of serotonin and free thryptophan appear to be on average 30-50% percent higher in individuals with autism . Autoantibodies to serotonin receptors  and reduced receptor binding have also been recorded . Of note is that one study found correlation of elevated plasma serotonin levels and the the major histocompatibility complex (MHC) types associated with autism .
Relative to expression and function of nicotinic receptors in autism, significantly lowered binding of some agonists to nicotinic receptors has been observed. For example binding of the agonist epibatidine in cortical areas to was up to 73% lower in autism group compared to controls. As with serotonine receptors, some of the nicotinic receptors have been noted to be significantly permeable to calcium and so able to regulate several neuronal processes…. Of interest are the preliminary reports of therapeutic action of galantamine in autism [15152789, 17069550], considering that neuroprotective actions of galantamine are thought to be linked to its modulation of nicotinic receptors .
A postmortem study revealed greatly reduced levels of glutamic acid decarboxylase (GAD) 65 and 67 kDa proteins in several areas of the brains of individuals with autism .This was confirmed by more recent results that showing GAD67 mRNA level reduced by 40% in the autistic group when compared to controls . Another study found serum levels of glutamate in the patients with autism were significantly higher than those of normal controls .
Hormonal abnormalities in autism
Abnormalities in hormonal metabolism are frequently observed in individuals with autism, with several studies observing abnormal levels of many hormons and their receptors compared to healthy controls, as well as abnormal hormonal secretion rhythms [2713159, 1904373, 12959423, 10808042].
For example the analysis of the Hypothalamic-Pituitary-Adrenocortical (HPA) system responses observed more variable circadian rhythm as well as significant elevations in cortisol following exposure to a novel stimulus in children with autism compared to controls. This exaggerated cortisol response is indicative of dysfunction of the HPA system in autism (16005570). Over-reaction of the endocrine system to insulin stress in autism has been recorded in another study, whereas the experimental stress of insulin-induced hypoglycemia showed slower recovery of blood glucose, much faster cortisol response and elevation of growth hormone levels compared to controls (1176974, 2870051). Low levels of insulin-like growth factor-I (IGF-I) in cerebrospinal fluid have also been observed (16904022).
Metabolic disorders of serotonin and dopamine systems have been suggested in autism, with approximately thirty percent of individuals with autism exhibiting high levels of serotonin, simultanous with lowered levels of melatonin (see Neurotransmitters). Melatonin is converted from serotonin by several enzymes of the pinealocytes in the pineal gland, including 5-HT N-acetyl transferase and 5-hydroxyindole-O-methyltransferase. Results of the studies looking at sleep disturbances in autism suggest that both dyssomnias and parasomnias are very prevalent in the disorders - people with autism frequently experience sleep disorders and exhibit atypical sleep architecture (10722958, 15705609, 17001527). Further evidence of dysfunction of pineal endocrine system in autism was obtained by looking at alterations of the light and dark circadian rhythm of melatonin, where none of autistic patient showed a normal melatonin circadian rhythm, together with once again significantly lower levels of this hormone (11455326).
Leptin is a hormone linked to melatonin that plays an important role in amongst other things regulation of appetite and metabolism. Results from a recent study have demonstrated significant differences in leptin concentrations between children with autism and controls (17347881).
Auditory, visual, tactile and oral sensory processing disorders and motor difficulties in autism
Individuals with autism often present with auditory, visual, tactile and oral sensory processing disorders, as well as various forms of motor difficulties, including dyspraxia (occasionally linked to low muscle tone), dystonia (involuntary, sustained muscle contractions) and ataxia (16940314, 17016677, 15514415, 16903124, 12639336). Visual disturbances in autism often include abnormalities of colour perception (16598434) and weak visual coherence. Retinal dysfunction in autism has been suggested, as well as deficits in visual processing in dorsal cortex (3341467, 15958508). Abnormal pain perception is sometimes present in autism, as well as self-injurious behaviour.
Dyspraxia is a disorder of coordination that can also be described as a difficulty with planning a sequence of coordinated movements, or in the case of ideo-motor dyspraxia, a difficulty with executing a known plan. Various areas of difficulty can include speech and language, fine motor control (eg handwriting or holding pencil in a correct way), poor spacial awareness and timing and balance of body movements and difficulty combining movements, poor physical play skills (throwing and catching a ball) and difficulty in manipulating small objects. Ataxia refers more specifically to a failure of muscle control in limbs, often resulting in a lack of balance and coordination and abnormal gait.
Reduced cerebral blood flow and cerebral edema in autism
Results of several studies have shown abnormal platelet reactivity and altered blood flow in children with autism. Following these findings it has been suggested that platelet and vascular endothelium activation could be one of the contributing factors to the development and clinical manifestations of the disorder (16908745). Relative to this the following case reports are of particular interest, both describing cases of inflammation of brain blood vessels resulting in loss of language and emergence of symptoms of autism. In both cases administration of nicardipine lead to recovery of language and behaviour (1373338, 11008286).
PET and SPECT scans in autistic children show a decreased cerebral blood floow in some regions of the brain (12077922, 10960047, 7790938) and cerebral water content was found to be raised in brain grey matter in children with autism (16924017). A model has been suggested in which the observed gray matter abnormality could be inflammatory (see Immunity-Inflammation section below). This finding of celebral edema at the same time offered an alternative explanation for enlarged brain size in autism, which up to then had been hypothesised to be due to lack ‘pruning’ of neurons during development.
what exactly is your purpose of sitting on IACC panel, what are you supposed to be contributing? Is it the case of you not being aware of all those findings? Or do you mean to say that the above does not constitute a multisystem disorder?
Posted by: Natasa | October 16, 2009 at 05:04 AM
Speaking of money, American taxpayers are paying for $1.5 billion worth of swine flu vaccines. And $10 billion has been set aside to "research flu viruses, monitor H1N1's progress, and educate the public about prevention." (See http://abcnews.go.com/Business/big-business-swine-flu/Story?id=8820642&page=1.) When I think of all the families out there who can't afford the help and care they need for their children who are suffering BECAUSE of vaccines ... This is sick! When is the madness going to stop?
Posted by: Jennifer Hutchinson | October 15, 2009 at 09:08 PM
Thanks Katie for all your efforts and these updates it is much appreciated.
Posted by: anonymous000012002 | October 15, 2009 at 08:53 PM
Sounds like the entire IACC is "out of context". I was appalled at the "offense" noted in the last conference update and read this update gritting my teeth that the insanity couldn't continue, but Katie trumped it ~ yes folks, it can get worse! (kind of like potty training sucks at 6, but fecal smearing sucks more). I so appreciate the reports, as maddening as they are, it is important to let it be public that the IACC has absolutely no intention of pursuing the declaration of intention on Insel's Director's Corner at the NIMH website -
"This approximately $60 million collaborative effort, the largest in NIH history to support ASD research, will result in studies that address a wide range of topics, including ASD measurement, identification of biological indicators, genetic and environmental risk factors, and ASD intervention and treatment."
Nope, THAT $60 million ain't happening - what the hell are they doing with that money????
Posted by: Tracy McDermott | October 15, 2009 at 07:38 PM
Thank you for another revealing note about what is happening at the IACC.
Dr. Landis's inadvertent candor is but the latest illustration of the contempt held by NIH IACC members for parents who believe that their children are sick and not afflicted with some vague conceptual syndrome like "autism."
People like Storey Landis and Tom Insel will continue their contemptuous behavior as long as we parents allow them to do so. No matter how articulate or passionate the statements made by our parent representatives the response they will receive from the likes of Landis, Insel and Janvier is eye-rolling disrespect. Not only are these public officials contemptuous of parents they have no respect for our nation's legal process.((Janvier is only a quasi public-official-as the AAP representative she better fits the category of private interest lobbyist).
If there exists evidence that children were injured by vaccines then our nation's legal system should provide a fair process for that child and his parents to obtain justice. If public officials denigrate the legal compensation process and regard parents advocating for their sick kids as no more than money grubbing liars - then there is no meaningful conversation to be had with them. In fact what is occurring is a bureaucratic charade in which the bureaucrats are striving to make it appear that they are listening, when in fact they are dismissing.
That is why I repeat my view that we parents should stop trying to convince these NIH people that we are virtuous and right. They will never agree. They look at us as gutter animals willing to do anything to make a buck.
We should respond in kind to those who have no respect for us and the suffering of our children.
We should be looking not to convince them of our rectitude; we should be organizing ourselves to defeat them as the enemies of our children.
Trial Lawyer (and proud of it)
Posted by: Robert J. Krakow | October 15, 2009 at 07:31 PM
I think that these so called "doctors" need to spend a week taking care of the each of the kid/s whose parents have filed claims. Maybe then a change will come about. It goes to show that unless you walk in someone's you will never understand where they stand or where they have been.
Lets bounce these Bozo's off the IACC.
Posted by: Cheryl Dieter | October 15, 2009 at 06:46 PM
Thanks for the report Katie. I can't even put all my thoughs into words right now. Landis' comments are offensive and mean spirited.
Parents filed their claims in the NVICP to secure financial help for their children's care, not for some big pay day. To imply otherwise is wrong.
Our children are sick and suffering. We were reminded again at a recent neurology visit that Michelle is facing death unless we can get her seizures under control. So far medications are not working. She is facing likely neuro-surgery. SUDEP, grand mal seizure clustering, GI disease, osteoporosis, blindness, autism - isn't that multi system?
There is no compassion and nothing to be gained from someone like this.
Posted by: Theresa Cedillo | October 15, 2009 at 06:05 PM
This reminds me of times I have read that we parents push for getting an ASD dianosis to "get more services and government assistance."
Makes my blood boil faster than anything else.
My child qualifies for NO governnment assistance of any kind, except Medicaid Waiver list that the waiting list for in my state is *literally* 10 years long.
Oh and my non-verbal 3 year old didn't qualify for ST over the summer at his public preschool, and got a whopping 1 1/2 hours a MONTH during the school year. (Too much $$$, doncha know?)
How's that for "services and government assistance"????!!!!!
Here's to the ASD gravy train! Let the cash roll in! See you all in Aruba!
Posted by: Jessica | October 15, 2009 at 05:55 PM
Parents accuse a doctor of not acknowledging a key component of many of their children's disorder...This is highly offensive because she hasn't personally seen it.
Yet, doctors accuse parents of making stuff up about their children's condition for the purpose of getting money...and this is not highly offensive.
Wow. Insult a doctor: highly offensive. Insult a parent: par for the course.
Great panel we got going here, eh?
Posted by: Julie Obradovic | October 15, 2009 at 04:51 PM
Scott Bono wrote:
"The reason Lyn Redwood was 'pushing for autism as a multi-symptom disorder' was because autism is a mutli-symptom disorder."
Touche. I love you, Scott.
Posted by: Amy Becker Clark | October 15, 2009 at 04:49 PM
The notes reinforce it is all about the money and not about truth and helping sick kids
Posted by: Richard | October 15, 2009 at 04:28 PM
The sooner everyone can stop wasting their time on these hacks, and knock them off their high-chairs of undeserved prestige and toss them into the dustbin of history where they belong - the better.
Posted by: Jake Crosby
Jake,you and I often don't agree,but I think you and I are both on the same page when we say,that both neurodiversity and the IACC are using an outdated model of what autism is.I would suggest anybody who is interested,go look at the presentation Martha Herbert gave at the Spring 2009 DAN! conference:
Look at what she says here about the bad old discredited model of autism.It sounds an awful lot like the one both neurodiversity and the IACC want to promote.
You and I are are probably among the handful here who have read enough reactionary anti-progress,neurodiversity screeds,to know exactly what he meant by this homosexuality stuff.Reading it sent a chill through me.If the IACC wants to promote neurodiversity, we are in a lot deeper s**t,Bristol 6 as usual :) ,than we imagined.
Posted by: Roger Kulp | October 15, 2009 at 04:25 PM
Thank you, Katie again. Your posts are so good and so helpful.
Posted by: Cathy Jameson | October 15, 2009 at 04:04 PM
Oops. It's 3:20 and Insel had to leave to catch a plane. I'm not saying he is missing anything important, he isn't. But come on. The meeting was scheduled for 2-4, make your damn travel schedule accordingly. It seems like they are just going out of their way to look bad. It's just insulting because he had to know that his leaving early would anger the community of people he is supposed to be serving but he did it anyway.
Posted by: Jack | October 15, 2009 at 03:29 PM
What is really, really bad is not that they are wanting to look into the awards given to vaccine injury children in the past, but the fact that I know more about this disease than they do?
They are suppose to be really smart people?
They act like this multisystem Inflammation of the blood vessels is the first time they have ever heard of this???
Am I understanding this right? Please someone tell me I am way off on my understanding?
Posted by: Benedetta | October 15, 2009 at 03:07 PM
Wow. These people have no freaking clue, do they? Gee whiz Dr. State, enlighten us, do, about how GI issues, food allergies, abnormal immune responses, non-verbalizing, seizures, motor incoordination, flapping and head banging are just like homosexuality. The stupid, it buuuurns. Insel put the dumbest rubes he could find on this panel. They're like a Monty Python sketch of self-important middle managers, but tragically their ignorance (and/or willful deceit) has actual consequences for the rest of us. Note to committee, if they are tuning in: We are NOT amused, go back to selling dead parrots and give your seats to people who actually know what they're talking about and have an interest in helping our kids.
Posted by: Garbo | October 15, 2009 at 03:06 PM
Well, certainly higher-functioning autistic people like myself can resort to ACT-UP-like tactics, that's what Katie Miller did when she spoke at the IACC.
Unfortunately, she resorted to them by promoting some of the most absurd, vile ND rhetoric I've ever heard.
Posted by: Jake Crosby | October 15, 2009 at 03:04 PM
By the way, whoever snagged these notes after the meeting is AWESOME.
I tend to agree with those who say talking to Insel & the IACC is a waste of time because their job is to perpetuate the cover-up. But I am very glad Ms. Wright and others are keeping tabs on them.
I wish we could resort to ACT-UP like tactics but it's hard when you have a sick child to care for and a job you can't afford to lose.
Posted by: julie | October 15, 2009 at 02:47 PM
The only reason Landis' private thoughts were taken out of context is because she spit them out herself onto a piece of hotel scrap paper in a room full of people. She has no one to blame but herself, and should be ashamed...and I politely told her so (with a copy to Dr. Tom)- after detailing to her both of my children's multi-system dysfunction.
Posted by: Adrienne | October 15, 2009 at 02:41 PM
I to love much so when truth is of exprssed in such a way to show us who is of really our enemy and who really is of for us and is of there because they really do care. Kim thanks for this.
It angers of me because yes it is of a full body issues. I to ahve been suffered health issues all of life , currently seeing of a Marvin Natowicz in Cleveland Clinic Ohio for to look at possible mitochondrial disease as a possible cause of so much health issues to me.
Posted by: sondra | October 15, 2009 at 02:37 PM
The neurodiversity people always throwing tantrums about Autism Speaks,even though AS bends over to kiss neurodiversity's collective fat rear end,whenever they do throw a hissy fit.
ND says AS needs to have a person on the spectrum on their board.(I might approach them in a couple of years if I am fully recovered.Autism itself is a breeze to manage or recover from,compared to all this GI and medical garbage.)Well I would argue we need to push just as hard for someone who believes autism is a medical disorder on the IACC.
Ideally I would like to see a Martha Herbert or a Tim Buie,but if it has to be someone from NIH,Susan Swedo is the obvious choice.
Posted by: Roger Kulp | October 15, 2009 at 02:37 PM
Sneering at suffering children and their parents--what kind of person does that?
Oh wait, now I know.
Posted by: Kristina | October 15, 2009 at 02:32 PM
I am not sure whether to cry, scream, or just burst into inappropriate hysterical laughter. I am so frustrated that such uninformed and unqualified people have been appointed to this committee. As a parent of a child with autism, I am offended that these high and mighty "experts" think that we are just imitating a celebrity or some other high profile person's idea of what autism looks like. I see it everyday in the toilet, in the headaches, the food intolerances, the back and forth game of progress and regression . . . I could go on and on, but I am among those who understand it all here. We need people on the IACC who actually have experience with autism (and not in the research way) and are willing to listen to what parents are trying to tell them. In the meantime, I'll go spend my not-from-the-vaccine-court money on helping my son recover.
Posted by: James' mom in MN | October 15, 2009 at 02:20 PM
Okay, that is disgusting!
Would she say that about people who sue others for wrongful death? I received a cash settlement when my first husband was killed. It wasn't a "wind-fall". It still does not take away the pain. I would rather that he be alive and I would not have the settlement.
The thought that parents are getting "free money" in vaccine court is unbelievable. I am sure that every parent who has received compensation would rather have a healthy child, then any amount of money.
Posted by: Judith | October 15, 2009 at 02:14 PM
Landis just led off the IACC conference call by apologizing for any upset caused by the fact that her "private" thoughts were taken out of context. She sounded downright peeved that she's been caught. Heh.
Posted by: Garbo | October 15, 2009 at 02:13 PM
I certainly hope that Story Landis reads the medical histories of children whose cases are filed in the National Vaccine Injury Compensation Program. Maybe the outpouring of misery will be enough to crack her stony soul.
And I hope she sees that the NVICP special masters eschewed that handy excuse word "coincidence," which lately is being vomited from the mouths of public health officials possessing the ability to read bullet points -- and not much more.
If that fails, then a mass diaper mailing is in order to provide a first-hand education about the medical damage involved in "autism."
Posted by: nhokkanen | October 15, 2009 at 01:58 PM
I keep writing my comment and then erasing it because I am so mad I can't even get the words together to articulate my feelings on this. This is just disgusting.
Posted by: Kristin | October 15, 2009 at 01:43 PM
The reason Lyn Redwood was "pushing for autism as a multi-symptom disorder" was because autism is a mutli-symptom disorder. Story, you may now stop your wondering, and, most importantly, your wandering.
Posted by: Scott Bono | October 15, 2009 at 01:07 PM
Someone had a good point, if government had been in bed with big tobacco then we'd NEVER have found out how terrible they are for you.
So, since government is in bed with pharma - what do we do?
It feels to me if that the truth will never be told but I have to remind myself that "there never was a good liar." Somehow, some way liars always get caught. Because the lies just keep getting bigger and bigger.
I am afraid but hopeful that this H1N1 (their biggest lie yet) is the whopper that finally does them in. I am praying...
Posted by: Stacie | October 15, 2009 at 12:53 PM
I'm ready for my second post on this.
Her comment about vaccine injuries and "looking at kids who have gotten awards" makes it sound like they are on stage and just performed some feat to win out over the other kids. Winning at vaccine court means the evidence has shown injury- hardly a win there Dr. Landis.
Then Matt's notes were not really his opinion but sounding like he is offering what he has heard others say (how lame is that?) I have heard the cochlear implant analogy before and it is not even close to what has happened to children injured by vaccines, subsequently diagnosed with "autism" and then parents trying desperately to recover them while seeking justice and endlessly trying to change the vaccine program. Get a clue, Matt!
Then his other comment:
"There are advocacy groups claiming that it is more like homosexuality" is just beyond bizarre and shows a discriminatory hint of the neurodiverse infiltration into this meeting. Now if Matt meant like AIDS - maybe he means the vaccine issue but I doubt Matt has that in his heart to explore or understand. He is a parrot just mouthing off a bunch of useless and incongruent theories.
Then there is the Ed comment.
"Exactly [the] point Ed was making."
Now could Ed be Dr. Ed(win) Cook from here in Chicago who testified against children with an autism diagnosis in the Autism Omnibus cases?
He is a psychiatrist and a "geneticist" which makes it convenient to treat, lecture, do research on autism and receive nifty NIH gene money :
"The gene, CNTNAP2, makes a protein that enables brain cells to communicate with each other through chemical signals and appears to play a role in brain cell development. Previous studies have implicated the gene in autism, and in this study researchers were able to link a specific variation in its structure to the disease."
"Results of the study were reported online January 10 in the American Journal of Human Genetics, by Aravinda Chakravarti, Ph.D., Dan E. Arking, Ph.D., and colleagues from the Johns Hopkins University School of Medicine, with Edwin Cook, M.D., and colleagues from the University of Illinois at Chicago."
"Autism is highly heritable. Identifying the genes involved is crucial to our ability to map out the pathology of this isolating and sometimes terribly disabling disease, which currently has no cure," said NIMH Director Thomas R. Insel, M.D."
And here we are back to Dr.Insel, his gene hunters, his IACC henchmen, his family in the vaccine business and so why again is he on IACC?
Posted by: Teresa Conrick | October 15, 2009 at 12:43 PM
So our "workable" routine isn't working heh? I could have told you that...oh, yeah, I did, many times on this forum.
The only thing they "worry" about...is our refusals to get vaccinated, on a giant whole basis...a collective of informed parents, knowing exactly how dangerous they are.
Get the picture? Until they make a safe program (they won't), I for one am a anti vaccine zealout, with bells and whistles on.
Pseudo concerned agencies tied to pharma, not thanks. I would rather fund the NVIC study, or other independent studies thank you very much. That includes why our kids harbor persistent viruses and bacteria, the heavy metals and how they make the immune system vulnerable, our toxic environment interaction with immune function/gut function etc etc...the rest of the studies done are GIANT wastes of time.
Posted by: Kathy Blanco | October 15, 2009 at 12:15 PM
Are you f&$%ing kidding me?????
Time to flood some inboxes.
Posted by: Aly's Mom | October 15, 2009 at 12:07 PM
Just when you cannot believe the last story another story pops up. This situation is horrific based on the generation of children suffering. These folks must go.
Posted by: Lisa @ TACA | October 15, 2009 at 12:02 PM
Some irony in the preprinted message on top of page 2 note ...
"Leave a Trail of Genuis" ....
Posted by: Diane | October 15, 2009 at 11:41 AM
I have a different interpretation of the note. The comment, "would be a good justification for looking at vaccine injured kids who have gotten awards" reflects what HHS fears, which is looking at the vaccine injured kids who have received awards by the vaccine court.
As of January 1, 2009 2,260 vaccine injured children have been awarded compensation by the vaccine court. $939 million has been paid in compensation from the trust fund for post 1988 cases.
However, HHS has never revealed how many of these children have a diagnosis of autism.
Looking at the vaccine injured cases, which have been compensated is one of the most cost effective actions IACC could take in order to study the causes of autism. IACC/HHS will not do it because they are afraid of what they will find.
Posted by: Rolf Hazlehurst | October 15, 2009 at 11:23 AM
Start with the Nuremberg Principles.
Then take a long hard look at your Congress
ask yourself which of them were part of it.
Which of them were too busy taking the money, to worry about the citizens or the country.
Ask yourself what happened to America - land of the free home of the bold.
Posted by: Robin Rowlands | October 15, 2009 at 10:48 AM
I consider myself to be a pretty tough person - but this one got my stomach sick. I'm not mad, just sick with disgust. :-0~~~~
Posted by: Lisa | October 15, 2009 at 10:44 AM
RE: the reference to the cochlear implant/deaf community and homosexuality. I believe that would have been in response to some neurodiversity propaganda, i.e. autism is just another way of being, leave it alone. It's bad enough the IACC is a bunch of impotent ignoramuses, now we have ND cranks telling them autism is just an alternate lifestyle in need of acceptance.
Bottom line: since when do we expect the government to be able to solve really tough problems? I think their last "accomplishment" was the a-bomb in 1945.
Posted by: Amy Becker Clark | October 15, 2009 at 10:27 AM
To me the points about the implants and homosexuality seem to be opposite, so I think it is telling that she apparently crossed out the one about the implants.
In the case of implants you have some parents in the deaf community saying they accept their child as deaf and it would be wrong to change who they are now through technology. I guess she is comparing these people to the neurodiverse movement. And in this case the mainstream supports parents going forward with the implants.
In the case of homosexuality I assume she is refering to people who want to change who their child and who say that homosexulaity can be cured. Opposite in that in this case parents using methods to "reprogram" their children to be heterosexual are against the mainstream.
And she crossed out the one about the implants.
So, is she comparing us to parents that try and prevent their children from being homosexual? That's not an association I care for.
Posted by: Jack | October 15, 2009 at 10:21 AM
KC is right: She seems to be projecting that everyone is a money-grubbing bitch. But take heart, guys, the fact that Dr. Oz said as much as he did shows me that he sees which way the wind is blowing and he is bailing the vaccine ship before he looks stupid. People like Landis are still desperately fighting. But, Dr. Oz, being such a trusted public figure has figured out that he will look pretty stupid, in light of all the evidence mounting, if he stays silent on the issue, or even worse if he is in collusion with it. Smart man.
Posted by: jen | October 15, 2009 at 10:19 AM
I find what's printed at the top of the note even more interesting. Must be standard-issue notepaper to do-nothing government bureaucrats, reminding them how to get through their workday. Show up, say the following, go home:
"Good Morning. Good Afternoon. Good Meeting."
Posted by: Amy Becker Clark | October 15, 2009 at 10:19 AM
"Leave a trail of genius," reads the Marriott notepad.
Dr. Landis clearly is incapable of such...
Posted by: Tired of Spunk | October 15, 2009 at 10:09 AM
OutLandish!- I mean out Landis! This person needs to go..along with Insel, Janvier and all the other so called experts who think they know about autism. Which one of them is responsible for, cares about, and loves a child with autism? As a parent with 2 kiddoes on the spectrum, I am outraged that they have such little respect for Lyn, and will try anything to stem the tide. But, like the little dutch boy holding his finger in the dyke, the water will burst forth, and the truth will come out. How do these people sleep at night?
Posted by: Kari Buxton | October 15, 2009 at 09:59 AM
Does anyone know if there are rules of engagement between IACC members. There needs to be more transparency for the stakeholders!!!! This is how were spending our taxpayers money??
It appears that many on the IACC are not interested in finding a solution. Arrggh!
Does anyone know the process of creating a FOIA request? I'd like to put in a request for all written and electronic communications between IACC members.
This evidence should cause changes in IACC memebership but how can we stop this from happening again?
Posted by: Steve | October 15, 2009 at 09:54 AM
obviously Dr Landis is projecting his own priorities on that of the rest of us - money.
Posted by: KC | October 15, 2009 at 09:30 AM
Unfortunately, none of this should be surprising. The IACC is the legacy of the inaptly named "Combatting Autism Act." When it became clear that Congress had no intention of passing a bill that would actually look into the areas that needed exploration, some of the organizations that had banded together to support the bill withdrew their endorsement. Others made a well-intentioned choice to keep supporting the bill in the hope of getting a "seat at the table." It is clear that some of the seats given out are less equal than others. Our seat is at the children's table, and the big people will just roll their eyes when we make too much noise.
Posted by: Wade Rankin | October 15, 2009 at 09:30 AM
My eyes are watering I'm so mad. Furious! I expect crap like this from the ignorant, uneducated, minions creeping about on all fours, mouth breathing gullible fools lined up for their next dose of N1H1 toxin because "everyone else" is doing so or they saw it on teeeeveeee. But for this sort of HATEFUL bigotry to come from someone that supposedly SERVES our community is beyond treason.
I will hope that others will follow me by making a formal FOIA (freedom of information act request) for all email from each of the committee members. This is public domain, we are entitled to it. Heads should roll.
Susan R. Cornell
Building 31, Room 5B35
9000 Rockville Pike
Bethesda, MD 20892
telephone number: (301) 496-5633
fax number: (301) 402-4541
Posted by: bensmyson | October 15, 2009 at 09:23 AM
At some point I lost my anger over stuff like this. To me it's just sad now. Incredibly, horrifyingly pathetic. Speaking for myself, I'm not looking for a payday, I knew early along that that would never happen. I just want a safe vaccine program for all children. It's not too much to ask. Drs like Landis and Insel, etc etc will never get it. Judging by this report, thanks Katie, this is clearly the distorted view they have of us.
Posted by: Amber | October 15, 2009 at 09:03 AM
Speechless, typeless ... just disgusted beyond belief. WTF? WTF? I'm so mad, I could freaking scream - If I ever came face to face with these horrible people, I fear my actions would land me in jail for life. Someday ... someday ... the truth.
Posted by: Kathy | October 15, 2009 at 09:01 AM
Every time I read another article on this so called IACC I feel sick to my stomach. Who put this group together in the first place? How do we reach a larger audience? We're just preaching to the choir here. How do we get people removed from the IACC? And Lyn Redwood, how can you stand sitting next to them?
Posted by: Katie Kelley | October 15, 2009 at 08:52 AM
Does anyone have landis' email address?
Posted by: Natasa | October 15, 2009 at 08:44 AM
We need to raise hell but with whom? I am so disappointed with Obama. I didn't expect it to get worse with this administration. My neice (husband's side)who is pregnant quit tennis under her doctor's advise but she did get the flu shot. Even if the gov't figures out they've been wrong how are they going to convince doctors? Of course, I advised my neice not to get the flu shot. What do I know, I'm just an idiot that recovered my child from autism because of information from other misinformed moms on the internet!
Posted by: Diane Farr | October 15, 2009 at 08:41 AM
And what about the thousands of us who did not, for whatever reason, file in vaccine court and cannot do so because we're past the statute of limitations? There's no money coming in for us--it's just going out at a frighteningly rapid rate.
Posted by: Mary | October 15, 2009 at 08:41 AM
Dear Arrogant Federal Bureaucrat:
Thank you so much.
Autism Dad in fly-over country
Posted by: fedup | October 15, 2009 at 08:39 AM
These Doctors have no fear of what they they leave behind. To leave a trail of career ending envidence is just unheard of. I am shaking my head in disbelief. This reminded me of the movie "Billy Madison" where the kids were exchanging notes when the principal subed for Ms. Vaughn. Anyways, thanks for posting it.
Posted by: Elucidatus | October 15, 2009 at 08:38 AM
Posted by: maybe she just needs to learn more | October 15, 2009 at 08:35 AM
These people... I don't know if it is worth anything, but I sent our medical history and requested the removal of Landis to the public inquiry email address above.
Posted by: Jack R. | October 15, 2009 at 08:30 AM
just think, all i needed is to have as a.s.d. child and i would have it made!! thats it- we are all trying to benifit from a vaccine injury
Posted by: omnibusted | October 15, 2009 at 08:22 AM
The last 2 weeks have been soooo frustrating, and I am clearly emotionally unprepared to hear this. How is it that these 2 are discussing vaccine injury awards at a meeting where they are supposed to be figuring out how to help our kids? How many children have gotten an award already? I know lots of kids with autism, none who have gotten their family rich.
This just shows exactly why our government fears the truth. It will cost them. But, what's good for the goose is good for the gander, and it has already cost me plenty. Plenty of money, time, heartache and oh, yeah...my son's brain. It never occurred to me 3 years ago at diagnosis that our journey would make us public enemy #1. Maybe the CDC can make a most wanted list...David Kirby, Kim, Dan, Katie, Lyn, JB, Barbara - send in your mug shots!
Posted by: chrissie | October 15, 2009 at 08:17 AM
It appears to me that the sole goal of the IACC is to protect the vaccination program. These doctors have no concern for the thousands of Americans living with autism directly or as a family member. Not everyone in the autism community has a vested or even a passing interest in vaccine causation - they TOO are being thrown aside, their interests unserved. There should be an outcry from every rafter of the autism community.
Posted by: Stagmom | October 15, 2009 at 08:02 AM
Matt's response on the Marriott sheet (Leave a trail of Genius ??- boy- they left a trail all right - and his was equally disturbing).
These people are either stupid , and I mean dumber than a box of rocks or they are harmful, clever, with a touch of evil.
To deny harm because they don't want to justify compensation - why? Is it coming out of their pocket? Are the kids faking brain swelling, tics, loss of language, diarrhea, reflux, chronic bacterial infections, viral titers over 3x the norm, allergies, seizures, inflammation, etc?
I am amazed at the level of deceit and blatant scheming to deny help for these sick kids!
Posted by: Teresa Conrick | October 15, 2009 at 07:40 AM
It is no accident people like Dr. Yvette Janvier, Dr. Matt State and Dr. Landis have come to occupy their seats on the IACC. I suspect they were "hand picked" to protect the vested interests of public health agencies and their "partners" within the vaccine industry.
Indeed, their eager participation in the sorry decisions of the IACC appears guided by their strong, personal, "religious faith" in vaccines...as evidenced by their consistently hostile rejection of any research that may threaten their "religious conviction" in the "miracle" of vaccines.
History is replete with instances where "science" was betrayed in favor of protecting "religious" beliefs...but... hopefully...the day is fast approaching where undeniable scientific "truth" will eventually prevail over the religious "dogma" that reigns over today's IACC.
Posted by: Bob Moffitt | October 15, 2009 at 07:36 AM
Dr. Landis - please flip open your yellow pages to the voluminous attorney section (personal injury/med mal subset). I challenge you to find ONE office who advertises practitioners who handle vaccine injury. If you're still curious call around to a few offices to see if someone would take such a case.
My guess is you will waste your time looking.
They aren't many out there because it takes too much time, too many expert witnesses, etc. - very costly for a plaintiff's firm.
That's not to say that parents shouldn't file a claim if they believe their child has been injured - or that NO such attorneys exist (they do). My point is that it is not easy to do so and in our litigious society that circumstance is curiously notable.
The bottom line: to suggest that this movement is about hitting the litigation lottery - simply ludicrous.
Posted by: Angela | October 15, 2009 at 07:36 AM
I don't think I have ever read anything so offensive about our poor sick children. And considering who said it and what position they hold in directing autism research and treatments this is outrageous.
What can we do to take action on this?
This can not be brushed aside.
"Dr." Landis should be removed from their position from the IACC immediately.
Posted by: Andrea | October 15, 2009 at 07:33 AM
This just says it all. Shows you how their minds work. Disgusting.
Posted by: julie | October 15, 2009 at 07:32 AM
I just clicked on the NIH NIND biog for Dr Landis, which was completely blank apart from a name, contact details and a photograph. However, on the strip at the top is the motto 'National Institute of Neurological Disorders and Stroke - reducing the burden of neurological disease...'. Her note makes it quite clear that this exactly what she is doing: reducing the burden to the state:
Posted by: John Stone | October 15, 2009 at 07:19 AM
Wow, just when I thought the dark age morons on IACC can not get any more ignorant, patronising, and vicious. Once again they proved me wrong.
Has anyone noticed the header on the second note: "The Trail of Genius"?
Maybe time to call the whole IACC series "The Trail of Idiots"
Posted by: Natasa | October 15, 2009 at 07:17 AM
And our tax dollars pay for this bullshit...I recently visited with and filmed a family and their beautiful autistic son....they are NOT plugged into the autism community, and know very little about the physical symptoms of other autistic children. I heard the same story from the mouths of the parents, which included chronic illness, GI problems, bacterial infections, lack of speech, motor skill issues....I am happy to report that the boy is slowly recovering. I walked away from the filming thinking...HOW THE HELL CAN THE MEDICAL COMMUNITY DENY THERE IS A PROBLEM WITH OUR CHILDREN?
Our autistic children are the sickest, however, a vast majority of typical children are chronically sick too.
The family I met uttered not one word about getting rich off of autism, their ONLY concern was healing their child.
The power of the ego/mind of the mainstream medical community to remain in denial is truly amazing.
PS Do these people still believe that the world is flat?
Posted by: claudine Liss | October 15, 2009 at 07:00 AM
So what about those of us who don't necessarily buy into the vaccine injured theory? Are we out for a buck, too? Sheeeeeeeeeeeesh.
Nominating Landis for a Darwin Award!!!
Posted by: Liane Gentry Skye | October 15, 2009 at 06:30 AM
The system has no shame and these people have no shame.
Two further thoughts come to mind:
1) It may not be about money for us but it is for Dr Landis.
2) Why after all these years does she think that Lynn Redwood's concerns are novel? What enables her to have a view if the point has only just occured to her?
The answer is that these people will never ever consider things which are detrimental to their interest, which has nothing whatever to do with science, justice and decency. It is just bureaucratic handwashing.
Posted by: John Stone | October 15, 2009 at 06:23 AM
I would think Lyn would have grounds for a Law Suit... Just Sick...
Posted by: Tanners Dad | October 15, 2009 at 06:19 AM
Implicit in this note is an admission that vaccines cause autism and the powers that be are worried how many other issues will be linked to vaccines.
If we go back to the arguments about whether smoking was bad for you, we see a similar pattern of suppressed research and records by those who new full well that smoking was harmful.
The difference is that the American and British Government had not taken on financial liability for the consequences
If they had we would no doubt still be advised that smoking was good for us or at least taken on balance beneficial.
We should force these individuals to answer the question as to whether they still feel that the current vacination regime is safe.
We should ask whether they fear such advice might be seen in years to come when the truth emerges about what was known and suppressed as complicity in a crime against humanity
Posted by: Robi Rowlands | October 15, 2009 at 05:44 AM
The sooner everyone can stop wasting their time on these hacks, and knock them off their high-chairs of undeserved prestige and toss them into the dustbin of history where they belong - the better.
Posted by: Jake Crosby | October 15, 2009 at 05:34 AM